Just wanted to check in and document that everything has been fantastic! Absolutely no shakes in the morning, big or small, no seizure activity in the slightest! I feel like a normal person.
My pregnancy is healthy, we are refusing ultrasounds, which got the hospital all in a tizzy. There's no medical indication, the AMA agrees that this should be a diagnostic tool because we don't have a lot of data on it (past knowing that repeated US can cause behavioral problems in humans and retardation in mice) and really the only benefit is to satisfy curiosity. Is it a boy or girl? Could he/she have Down's? Is there a heart defect? Are the long bones growing just fine? Just leave it alone, guys.
When my sister had her US she heard "Look at the size of that head!" and "Looks like he may have a clubbed foot, so we can schedule you a consult with an orthopedic surgeon" (his foot was fine & his head looks no different than the typical baby's cranium). Or when one of my great friends' mom went in for her US and was told that she would have to try to abort one twin because of some complication - they are both fine. RIDICULOUS.
US heats tissue and the brain is surrounded by a plate of bone just ready to be heated up - this is is how it can cause harm. One ultrasound it likely similar to the risk of having one x-ray when you're pregnant (which they used to do & yes, I realize that one has radiation & one has 12MHz sound waves). It may not cause damage - I suspect it would depend on your timing. Are you blasting the 8 week old fetus with super high intensity sound waves as crucial neuronal networks are delicately reaching out to find their synapses? And how the hell would you know?
It's disturbing.
We did listen to the fetal heart tones using a 2.5MHz Doppler for about 60 seconds of exposure because I wanted to know. Later, I felt like I should have stopped the minute the baby kicked the Doppler (which was instantly) because all I really wanted to know if that he/she was alive. I felt a flutter 3 weeks ago and nothing since. That was my mistake though - I didn't really need to listen to his/her heart at 18 weeks. I could wait a few months and the doc could listen with a fetoscope, which relies on clinical skill rather than new technology.
I'm growing right on target in weight and fundal height. All is well with my brain & I'm taking a lot of supplements for the baby's brain too.
Friday, September 2, 2011
Saturday, July 2, 2011
"o.k., fine - you can be off your meds"
So, after my new neurologist met her worst nightmare (I batted my eyes) she said I could go see an epilepsy specialist. The night before my appointment I thought, "Wait... why am I paying $600 or whatever to go see a drug dealer?" Sorry to be rude, but if the whole point is that I don't want to be on any medication... what good can a she do?
All that happened is that I explained my situation & she said that she was comfortable with my choice being off of medication, assuming I don't start having terrible seizures, etc. That is A LOT of money going into the system for her to tell me that. Had she said I needed to be on meds, I would have told her to shove it (in a nice way) so really, I had no purpose of going. She said something about reporting me to the DMV if I was worse, but I know that you actually have to have loss of consciousness in the last 6 months or the DMV doesn't give a rip.
I decided that I would mention my book because she seems like a really cool person. A wall went up when I said "naturopathic" and she recited something that she had canned from other people asking her about natural therapies - there's no evidence, the FDA doesn't approve it and her license/malpractice doesn't cover it. I pointed out though that she does tell people to get sleep, decrease their stress, exercise and drink water for scientific reasons and she agreed. She must have thought I meant herbs, which many MDs are deathly afraid of. Natural therapies include l ifestyle in a big way & we all agree on the basics. She was a nice person and had to be smart to get where she is. I'm also pleased that she used reasoning skills (based on my seizure frequency and past warning signs) instead of dogma. Shows promise.
My ND, of course, worked with me. She checked into other medications in case a seizure was coming on because we have that in our scope of practice, but I'm not into it and most are contraindicated in pregnancy - like benzodiazapines. Other ways proven by parents and caretakers of people not in scientific double blind studies? Things can try if I get the shakes or feel funny:
1. Cayenne pepper on the tongue - whipped one fellow's wife right out of the every time.
2. Ice to armpits and around inguinal areas in a circle (my ND's child has seizures & this has worked for her as well as others) 
3. Scents - carrying a strong smell, like lavender or the famous jasmine essential oil can snap you out of it. The brain has a direct extension exiting into the nose which is why scents bring up such strong memories (great for those with memory problems and Alzheimers).
I'm also taking 1000mg Taurine (an amino acid found in foods) for it's neuroprotection and GABA receptor effects twice a day, at least 300mg of Magnesium (which is also helpful for my gastrointestinal tract in pregnancy) and my diet is filled with protein and healthy fats. I'm drinking a lot of water & no caffeine. I sleep when I need to and don't drive in the mornings. I'm grounding myself outside without my shoes on in the mornings and I plan on getting massages to decrease stress. AND I just saw The Perfect Pregnancy workout video that I think I'll give a try.
Things are good. Maybe now the people who MAY be present at my birth will be a little less edgy with my condition that's so scary for them.
References? Yes, I actually have your God of science here, but you can look yourself:
http://www.ncbi.nlm.nih.gov/pubmed/19025770
http://www.ncbi.nlm.nih.gov/pubmed?term=magnesium%20epilepsy
All that happened is that I explained my situation & she said that she was comfortable with my choice being off of medication, assuming I don't start having terrible seizures, etc. That is A LOT of money going into the system for her to tell me that. Had she said I needed to be on meds, I would have told her to shove it (in a nice way) so really, I had no purpose of going. She said something about reporting me to the DMV if I was worse, but I know that you actually have to have loss of consciousness in the last 6 months or the DMV doesn't give a rip.
My ND, of course, worked with me. She checked into other medications in case a seizure was coming on because we have that in our scope of practice, but I'm not into it and most are contraindicated in pregnancy - like benzodiazapines. Other ways proven by parents and caretakers of people not in scientific double blind studies? Things can try if I get the shakes or feel funny:
1. Cayenne pepper on the tongue - whipped one fellow's wife right out of the every time.
2. Ice to armpits and around inguinal areas in a circle (my ND's child has seizures & this has worked for her as well as others)
I'm also taking 1000mg Taurine (an amino acid found in foods) for it's neuroprotection and GABA receptor effects twice a day, at least 300mg of Magnesium (which is also helpful for my gastrointestinal tract in pregnancy) and my diet is filled with protein and healthy fats. I'm drinking a lot of water & no caffeine. I sleep when I need to and don't drive in the mornings. I'm grounding myself outside without my shoes on in the mornings and I plan on getting massages to decrease stress. AND I just saw The Perfect Pregnancy workout video that I think I'll give a try.
Things are good. Maybe now the people who MAY be present at my birth will be a little less edgy with my condition that's so scary for them.
References? Yes, I actually have your God of science here, but you can look yourself:
http://www.ncbi.nlm.nih.gov/pubmed/19025770
http://www.ncbi.nlm.nih.gov/pubmed?term=magnesium%20epilepsy
Monday, June 20, 2011
The EEG Result
So, I threw up for the first and only time right before the EEG. It seems like when I went off my meds, my morning sickness got stronger. Interpret as you will.
The tech said he thought it looked fine, but it was up to the doctor. He's seen more of them than she has but hasn't been formerly trained. I felt pretty good about it. Then the phone call cascade comes in. 3 messages later, my neurologist gets a hold of me.
"There is generalized activity throughout the brain and one incidence of an ictal focus at the temporal lobes." She went on to say how I could basically have a seizure at any moment. "Have you had a tonic clonic before?"
...what? Well, yeah, remember? I thought that was why she was so worried. That was an odd question... maybe they just put people on medication if they have interesting EEGs these days.
I haven't felt any activity other than the buzz happening around me about what an idiot I am to not be on my medication. Like I have a lamotrigine deficiency. How about we work to solve the individualized symptom of seizures? Alas, the bulk of the brainwashed population believes that we are powerless to cure anything and certainly couldn't function without medication. Of course, I don't watch TV.
I went to my first OB appointment today. Again, not impressed. It's all about data collection, genetic tracking and, God forbid, someone decides that you're an unfit mother and calls DHS on you. I'm not on medications, I don't even drink caffeine.
"What do take for pain?"
That question was interesting to me because I don't take anything. If I'm having really bad menstrual cramps, I'll take a few shots of cramp bark. If I'm having a tension headache, I'll drink more water and try to relax. If I had migraines, I'd look into food allergies, etc.
"I just ask because if you take anything, it should be Tylenol."
You mean the drug that leads over 26,000 people to the hospital per year, 458 of them not living to tell the tale? Maybe people should think about where their pain is coming from before they nuke their livers. And what about a developing fetus? Doesn't anyone think about what it goes through because you've got a backache and it's uncomfortable?
What a crazy, crazy world we live in. I feel like they've all gone mad, so it's just a matter of time before they discover I'm a nut in their book.
The tech said he thought it looked fine, but it was up to the doctor. He's seen more of them than she has but hasn't been formerly trained. I felt pretty good about it. Then the phone call cascade comes in. 3 messages later, my neurologist gets a hold of me.
"There is generalized activity throughout the brain and one incidence of an ictal focus at the temporal lobes." She went on to say how I could basically have a seizure at any moment. "Have you had a tonic clonic before?"
...what? Well, yeah, remember? I thought that was why she was so worried. That was an odd question... maybe they just put people on medication if they have interesting EEGs these days.
I haven't felt any activity other than the buzz happening around me about what an idiot I am to not be on my medication. Like I have a lamotrigine deficiency. How about we work to solve the individualized symptom of seizures? Alas, the bulk of the brainwashed population believes that we are powerless to cure anything and certainly couldn't function without medication. Of course, I don't watch TV.
I went to my first OB appointment today. Again, not impressed. It's all about data collection, genetic tracking and, God forbid, someone decides that you're an unfit mother and calls DHS on you. I'm not on medications, I don't even drink caffeine.
"What do take for pain?"
That question was interesting to me because I don't take anything. If I'm having really bad menstrual cramps, I'll take a few shots of cramp bark. If I'm having a tension headache, I'll drink more water and try to relax. If I had migraines, I'd look into food allergies, etc.
"I just ask because if you take anything, it should be Tylenol."
You mean the drug that leads over 26,000 people to the hospital per year, 458 of them not living to tell the tale? Maybe people should think about where their pain is coming from before they nuke their livers. And what about a developing fetus? Doesn't anyone think about what it goes through because you've got a backache and it's uncomfortable?
What a crazy, crazy world we live in. I feel like they've all gone mad, so it's just a matter of time before they discover I'm a nut in their book.
Tuesday, June 14, 2011
Off the Meds!
"Discontinuing therapy: Decrease dose by ~50% per week, over at least 2 weeks unless safety concerns require a more rapid withdrawal. Discontinuing carbamazepine, phenytoin, phenobarbital, primidone, or rifampin should prolong the half-life of lamotrigine; discontinuing valproic acid should shorten the half-life of lamotrigine"
Well, I've been on 25mg a day for 2 weeks. I think it's time to bid adieu to this little quarter of a pill. I'm not going to attempt to chop it in half again or anything - it's time I let go of the railing. I only had a pinky hold anyway.
I'm going to feel so good not having to think about this anymore. I won't have to think about miscarriage, developmental delays or deformities. I'm lucky because for some reason my neurologists over the years just refilled Lamictal as a monotherapy, no other drugs necessary. And over the years, I learned my triggers and educated myself about the condition I have. What's alarming to me is that people aren't educated about their own health boggles and they have to go discover this on their own - in a sense, go get a medical education.
And graduation from medical school for me, my friends, is the Saturday after next. I'm unimpressed with my 1st neurologist who put me on Dilantin and told me I wouldn't be able to hack it in med school.
Now I feel like I know what's going on in my body and I vow to teach my patients what's going on in theirs.
Well, I've been on 25mg a day for 2 weeks. I think it's time to bid adieu to this little quarter of a pill. I'm not going to attempt to chop it in half again or anything - it's time I let go of the railing. I only had a pinky hold anyway.
I'm going to feel so good not having to think about this anymore. I won't have to think about miscarriage, developmental delays or deformities. I'm lucky because for some reason my neurologists over the years just refilled Lamictal as a monotherapy, no other drugs necessary. And over the years, I learned my triggers and educated myself about the condition I have. What's alarming to me is that people aren't educated about their own health boggles and they have to go discover this on their own - in a sense, go get a medical education.
And graduation from medical school for me, my friends, is the Saturday after next. I'm unimpressed with my 1st neurologist who put me on Dilantin and told me I wouldn't be able to hack it in med school.
Now I feel like I know what's going on in my body and I vow to teach my patients what's going on in theirs.
Saturday, June 11, 2011
My New Neurologist
So, I asked the medical assistant at the hospital which doc she'd recommend for a pregnant women with epilepsy who's into natural medicine and wants to not be on drugs. Tall order for a neurologist. So this neuro is new and has advised a patient to take Butterbur for migraines - there's hope.
The MA was disgruntled and shared that she was frustrated with the medical establishment after over a decade of working in it because all they do is hand out pills like solutions.
When the doc came in, I explained that I haven't been on the dose I'm supposed to be on in a long time, I'm sleeping all the time, eating frequently & healthily, cut caffeine and alcohol and my stress level has gone down since I'm about to graduate (kind of over the panic). I've had no myoclonic jerking or symptoms and I rapidly lowered my dose.
She said that it was the American Neurological Association's stance that I should increase my dose by 6 times back up to the dose I was prescribed 6 years ago and stay on that for the course of the development of my fetus. Period.
She then went on to say that I'm putting my baby at risk for death because I would cut of the blood supply during a seizure. She said, "But, it looks like you've already made up your mind"
Darn tootin', Miss. I hadn't had a full-on tonic clonic in 6 years on a low dose of medication that is mostly used to control myoclonis and bipolar depression, but I had 2 on a higher dose of Lamotrigine and 4 on Tegretol. So, for someone who went a year without medication or a seizure (a.k.a. I'm not convulsing all the time and I know my triggers), is it really indicated? Is it worth the risk of damage to the baby?
I don't think her brain was working far beyond the functioning of a parrot. Her physical exam sucked and she nearly forgot to do it. She was mostly worried about giving me the PARQ and charting that she gave me the standard of care so I can't sue her. She couldn't even advise me on how I should come off of it - she just pointed out that I might feel sad because it's for bipolar & that I should consult my general practitioner about the danger of the herbs I'm taking.
Look, I am a general practitioner in a matter of months. I know the biochemistry f the drug I am taking more than most doctors & very few doctors know anything about herbs. They just say they're dangerous and don't work in the same sentence. If the tiny amount of rosemary is contraindicated due to uterine contraction, then so are orgasms. I can feel that red raspberry tea is not good for me right now because I know my body... and it hurts, but it CAN be used throughout pregnancy in some people with great benefit.
So, I'm alone. I still hate going to the doctor and the hospital, so we'll see how this birthing experience goes. A mom can't be nervous - it makes the whole thing take longer and be more painful because stress and birthing don't mix.
Neurologist Fail.
The MA was disgruntled and shared that she was frustrated with the medical establishment after over a decade of working in it because all they do is hand out pills like solutions.
When the doc came in, I explained that I haven't been on the dose I'm supposed to be on in a long time, I'm sleeping all the time, eating frequently & healthily, cut caffeine and alcohol and my stress level has gone down since I'm about to graduate (kind of over the panic). I've had no myoclonic jerking or symptoms and I rapidly lowered my dose.
She said that it was the American Neurological Association's stance that I should increase my dose by 6 times back up to the dose I was prescribed 6 years ago and stay on that for the course of the development of my fetus. Period.
She then went on to say that I'm putting my baby at risk for death because I would cut of the blood supply during a seizure. She said, "But, it looks like you've already made up your mind"
Darn tootin', Miss. I hadn't had a full-on tonic clonic in 6 years on a low dose of medication that is mostly used to control myoclonis and bipolar depression, but I had 2 on a higher dose of Lamotrigine and 4 on Tegretol. So, for someone who went a year without medication or a seizure (a.k.a. I'm not convulsing all the time and I know my triggers), is it really indicated? Is it worth the risk of damage to the baby?
I don't think her brain was working far beyond the functioning of a parrot. Her physical exam sucked and she nearly forgot to do it. She was mostly worried about giving me the PARQ and charting that she gave me the standard of care so I can't sue her. She couldn't even advise me on how I should come off of it - she just pointed out that I might feel sad because it's for bipolar & that I should consult my general practitioner about the danger of the herbs I'm taking.
Look, I am a general practitioner in a matter of months. I know the biochemistry f the drug I am taking more than most doctors & very few doctors know anything about herbs. They just say they're dangerous and don't work in the same sentence. If the tiny amount of rosemary is contraindicated due to uterine contraction, then so are orgasms. I can feel that red raspberry tea is not good for me right now because I know my body... and it hurts, but it CAN be used throughout pregnancy in some people with great benefit.
So, I'm alone. I still hate going to the doctor and the hospital, so we'll see how this birthing experience goes. A mom can't be nervous - it makes the whole thing take longer and be more painful because stress and birthing don't mix.
Neurologist Fail.
Friday, June 3, 2011
Probiotics and inflammation in the brain
"Dose-Dependent Immunomodulation of Human Dendritic Cells by the Probiotic Lactobacillus rhamnosus Lcr35."
I'm working on my report for a urinary tract & vaginal infection we treated with probiotics, (among other things), and stumbled upon this. Basically, this certain strain of bug you can take in a capsule these days produces signaling molecules that are healthy for the brain cells via a anti-inflammatory mechanism. A great studies on probiotics and babies - the PANDA study - showed significant decreased allergies and skin reactions in newborns as a result of probiotics. I always think of allergies, skin and the brain as related because they are embryologically and things that tend to show up on the skin may have already had an impact on the brain - like increased histamine in the springtime due to allergies. There's no arguing against the brain fog there.Thought it was interesting. I'll have to check if it's in the probiotic blend I'm currently taking. It's good to rotate probiotics clinically, so that would go along with the dose dependent nature of this study.
Thursday, June 2, 2011
25mg qd still o.k.
Things are going well on the 25mg - just a note. Grand Rounds on Monday is going to be a hurdle because I have to sign in by 7:30am, which means I have to leave by 6:30 to drive for an hour. Not necessarily safe. I can't miss any, so I am at the crossroads of deciding if I will have one of my friends unethically sign me in OR throw myself at the mercy of the administration who may, for all I know, get their panties in a bunch and call the DMV to alert them I'm changing my meds. Who knows?
That scenario is pretty possible because, as doctors, they don't realize that the DMV doesn't want to hear about it until absolutely necessary - like if I have a seizure. When I got my license I asked the DMV worker if I had to provide anything extra because I have epilepsy. Her eyes darted from side to side and she quickly said if I hadn't had a seizure in the last 6 months, it didn't matter. So, it's never been on my record. Of course, I've had less than 15 tonic clonic seizures in my lifetime and they've all been in the morning after I've stayed up too late or was stressed out.
I can watch the grand rounds videos later in the morning to maintain my education, but I'm uncertain if I want to blow the whistle on myself. How ridiculous.
Feeling fine so far, but I've been eating and sleeping whenever I want today. I woke up at 3:30, stayed in bed until 4:30am and finally decided to get up this morning. Could have been the pills of the flux of hormones. Then I crashed at 7:30 for a few hours. I trust that my brain will shut off if it needs to when I have those mornings. Maybe that will happen Monday & I'll be sleeping through grand rounds.
That scenario is pretty possible because, as doctors, they don't realize that the DMV doesn't want to hear about it until absolutely necessary - like if I have a seizure. When I got my license I asked the DMV worker if I had to provide anything extra because I have epilepsy. Her eyes darted from side to side and she quickly said if I hadn't had a seizure in the last 6 months, it didn't matter. So, it's never been on my record. Of course, I've had less than 15 tonic clonic seizures in my lifetime and they've all been in the morning after I've stayed up too late or was stressed out.
I can watch the grand rounds videos later in the morning to maintain my education, but I'm uncertain if I want to blow the whistle on myself. How ridiculous.
Feeling fine so far, but I've been eating and sleeping whenever I want today. I woke up at 3:30, stayed in bed until 4:30am and finally decided to get up this morning. Could have been the pills of the flux of hormones. Then I crashed at 7:30 for a few hours. I trust that my brain will shut off if it needs to when I have those mornings. Maybe that will happen Monday & I'll be sleeping through grand rounds.
Wednesday, June 1, 2011
Reckless
O.k., this is reckless even by my standards... but I am now taking 25mg once a day. I feel strange and last night I could tell that my levels had dropped and my brain was tired. I had that light headed feeling and was borderline twitchy for a brief period of time. My only want is that if I have a seizure, I not do it in a bad place.
My baby's neural tube is developing right... now.
Granted, I'm not taking a cocktail of drugs and I'm no longer on dilantin - lamotrigine seems pretty harmless in comparison, but I'm not chancing it.
I made an appointment for a neurologist next week. I'm hoping to tell her that Ive successfully come off of my meds nearly entirely by then (25mg left). That way, she won't have to worry about me suing her or the additional liability. I know that game. Sometimes I'm really happy when patients slowly take themselves off their meds as I treat them when I don't feel like the benefit outweighs the risks. If she's not so happy about it, maybe it will prove that I don't need to be on them... because I'll go off of them with or without her approval - I'm nearly a doctor myself and we can be the most annoying patients.
The tincture I'm taking for brain nourishment:
Avoiding sugar and eating real food is going well. Gluten, not so much. Let me graduate first. I don't eat a lot of bread products, but eliminating small amounts of gluten found in everything from powerbars to the glue in tea bags is going to take some time.
Staying focused and getting things done to graduate... not going all that great...
My baby's neural tube is developing right... now.
Granted, I'm not taking a cocktail of drugs and I'm no longer on dilantin - lamotrigine seems pretty harmless in comparison, but I'm not chancing it.
I made an appointment for a neurologist next week. I'm hoping to tell her that Ive successfully come off of my meds nearly entirely by then (25mg left). That way, she won't have to worry about me suing her or the additional liability. I know that game. Sometimes I'm really happy when patients slowly take themselves off their meds as I treat them when I don't feel like the benefit outweighs the risks. If she's not so happy about it, maybe it will prove that I don't need to be on them... because I'll go off of them with or without her approval - I'm nearly a doctor myself and we can be the most annoying patients.
The tincture I'm taking for brain nourishment:
- Bacopa Monnieri (also used to prevent miscarriage - bonus)
- Centella asiatica
- Ginko biloba
- Hypericum perforatum (great for enhancing serotonin as I come off lamotrigine, which is also used for bipolar and could give me a little mood change)
- Rosemary - this is something I had in the tincture before I knew I was pregnant. Rosemary in high amounts causes uterine contractions and can theoretically cause miscarriage. It's an herb that got a totally bad rap for this and now women get all frightened to even eat it. I estimate that I get 6 drops of concentrated rosemary every time I take a dose, which isn't much. I seriously doubt my body will give up a baby even if it causes increased tone. The carnosic acid in Rosemary will shield my brain from free radicals that may be developing with the stress and abnormal brain activity I felt last night.
Avoiding sugar and eating real food is going well. Gluten, not so much. Let me graduate first. I don't eat a lot of bread products, but eliminating small amounts of gluten found in everything from powerbars to the glue in tea bags is going to take some time.
Staying focused and getting things done to graduate... not going all that great...
Tuesday, May 31, 2011
Cutting my Dose
Just a note - when I found out I was pregnant, on 5/28/11, I cut my dose in half; from 50mg bid to 25mg bid. Now I HAVE to get a neurologist.
I'm suddenly not so worried about seizures in pregnancy. My brain is bathed in progesterone, having an anticonvulsant effect (versus estrogen's pro-convulsant shenanigans), and I'm sleeping all the time. Like exhausted, nearly drove off the road tired. If anything is a risk to my pregnancy, it's pregnancy itself... and my epilepsy medication. It's one of those things that a mother will fret over until the end of her days, "What if he's behind? What if that poison I took during pregnancy affected her for life?"
I read on Mayo clinic (on their very general article on anticonvulsants, for which lamotrigine does not typically fit with biochemically) that some minor changes may occur such as a wider brow... you mean like in Downs and Fetal alcohol syndrome? That's fine, it's probably just cosmetic - continue taking your pills. If I had a baby inside me with Downs, I might add, I'd love him/her with all my heart... but I'd rather not be wondering if it was my decision to take a pill twice a day that lead to it.
Oh, and I thought about the argument for having a seizure or two off meds whilst pregnant. O.k., so hitting the floor would be bad, especially if you're far along & the trauma triggered a birth response (giving birth during a post-ictal state...hmmm), BUT the low oxygen piece is theoretical based on fear without logical analysis of the situation. Fetal blood optimizes his/her use of your oxygen via myoglobin, which has a huge advantage over our blood comprised of hemoglobin. If I stopped breathing for 2 minutes, I think the baby would grab on to all the oxygen possible with higher affinity... and I'd wake up with a worse headache. If you had 3 seizures a day all throughout pregnancy, that's an issue, but I'd argue even if I had 5 seizures throughout my pregnancy (when I'm awake enough to have one) it wouldn't instantly create the type of pathology taking my medication every day will. With the great advances that happened when babies of epileptic moms started dying and being born with major defects due to folic acid deficiency, sometimes I wonder if I'm not just a number in an unannounced experiment.
I'm suddenly not so worried about seizures in pregnancy. My brain is bathed in progesterone, having an anticonvulsant effect (versus estrogen's pro-convulsant shenanigans), and I'm sleeping all the time. Like exhausted, nearly drove off the road tired. If anything is a risk to my pregnancy, it's pregnancy itself... and my epilepsy medication. It's one of those things that a mother will fret over until the end of her days, "What if he's behind? What if that poison I took during pregnancy affected her for life?"
I read on Mayo clinic (on their very general article on anticonvulsants, for which lamotrigine does not typically fit with biochemically) that some minor changes may occur such as a wider brow... you mean like in Downs and Fetal alcohol syndrome? That's fine, it's probably just cosmetic - continue taking your pills. If I had a baby inside me with Downs, I might add, I'd love him/her with all my heart... but I'd rather not be wondering if it was my decision to take a pill twice a day that lead to it.
Oh, and I thought about the argument for having a seizure or two off meds whilst pregnant. O.k., so hitting the floor would be bad, especially if you're far along & the trauma triggered a birth response (giving birth during a post-ictal state...hmmm), BUT the low oxygen piece is theoretical based on fear without logical analysis of the situation. Fetal blood optimizes his/her use of your oxygen via myoglobin, which has a huge advantage over our blood comprised of hemoglobin. If I stopped breathing for 2 minutes, I think the baby would grab on to all the oxygen possible with higher affinity... and I'd wake up with a worse headache. If you had 3 seizures a day all throughout pregnancy, that's an issue, but I'd argue even if I had 5 seizures throughout my pregnancy (when I'm awake enough to have one) it wouldn't instantly create the type of pathology taking my medication every day will. With the great advances that happened when babies of epileptic moms started dying and being born with major defects due to folic acid deficiency, sometimes I wonder if I'm not just a number in an unannounced experiment.
Sunday, May 29, 2011
Sunday, May 22, 2011
A General Plan
O.k., so now I'm obsessed again with coming off of these things. Sorry, but seizures don't seem all that bad to me and I believe through lifestyle modifications, I can significantly cut, if not eliminate, my seizures. I found this blog about coming off of Lamictal from someone who uses it for depression.
She and her doctor agreed on this plan:
1. Eating healthy - cut gluten because of the strong neurological association with inflammatory molecules produced in the gut as a reaction to gluten. Sucks, but it kind of happens anyway when you clean up your diet to be more whole foods. Increase veggies, protein and healthy fats in fish. Include protein shake with omega 3-6-9 Udo's oil. Snack on nuts and dried organic fruit.
2. Supplements: B vitamins with MTHF (activated folic acid), multivitamin, Zinc (in the am), Vitamin D (because everyone in the NW is deficient), antioxidant support, probiotics (because most neurotransmitters come from the gut), Magnesium (pm), 2.5 mg Melatonin before bed. Pantethine 250mg in 1 Tbs Lecithin throughout the day for my heart arrhythmia likely induced by lamotrigine.
3. Bed by 9:30-10:00 wake at 6:00 (which is great for the puppy anyway - did I mention we got a Newfoundland puppy?)
4. Prioritize and focus on the assignments I have to do to graduate and take boards. More focus means less time surfing the web and chatting over email and facebook. Unnecessary.
5. Exercise. Puppy walk x 1 hour every morning (except Mondays when I have to race in for grand rounds and take the pup to daycare). Other than that, I have got to find something I'm into that makes me sweat and doesn't cost a fortune. Maybe P90X
6. Herbs: Bacopa (god it tastes gnarly), St Johns Wort (mood and nervous system support - they can piss off about contraindications; I've done my research, I know the biochemical pathways & know this was blown out of proportion in the medical world), Nervines like passionflower, valerian, lemon balm and kava to aid in my stress response. Ginko & tumeric are contained in some things that I take to increase perfusion to cells and decrease inflammation.
I have to wait on detox in case I'm pregnant. I don't want to mobilize my toxins on purpose because there will already be quite a bit moved into my circulation and into my baby naturally when I start tapping into my tissues for nourishment, (I believe no matter how much you consume)
7. Financial Health - this has to do with stress. I need to really follow my budget (I've made it a few times, but when I'm hungry and didn't plan ahead, I spend quite a bit on food). I need to start making some money and seeking the opportunities that are abound. Should be easy as a doctor, right? How about a doctor that isn't playing the insurance game?
8. Wellness - paying attention to my relationships, walking outside without my shoes on in the sun, gardening, baths with essential oils 2xper week and taking time to relax. Cortisol and the effects of stress are hard on the brain.
That's off the top of my head. Now that I strongly suspect I am physically being impacted by a drug long term AND that the effects have been shown to be cumulative even in the research, my motivation has increased... by a lot. If I find out I'm pregnant this next week, a lot of things will change very quickly. Oh, I've sent my records to a neurology group - we'll see if the doc will tolerate me.
She and her doctor agreed on this plan:
- 150 mg for 3 months
- 100 mg for 3 months
- 75 mg for 3 months
- 50 mg for 3 months
- 25 mg for 3 months
- 12.5 mg
- 150 mg for years
- 100 mg for 1 year
- 50 mg for 3 months --> seizure
- 100 mg for 7 months
1. Eating healthy - cut gluten because of the strong neurological association with inflammatory molecules produced in the gut as a reaction to gluten. Sucks, but it kind of happens anyway when you clean up your diet to be more whole foods. Increase veggies, protein and healthy fats in fish. Include protein shake with omega 3-6-9 Udo's oil. Snack on nuts and dried organic fruit.
2. Supplements: B vitamins with MTHF (activated folic acid), multivitamin, Zinc (in the am), Vitamin D (because everyone in the NW is deficient), antioxidant support, probiotics (because most neurotransmitters come from the gut), Magnesium (pm), 2.5 mg Melatonin before bed. Pantethine 250mg in 1 Tbs Lecithin throughout the day for my heart arrhythmia likely induced by lamotrigine.
3. Bed by 9:30-10:00 wake at 6:00 (which is great for the puppy anyway - did I mention we got a Newfoundland puppy?)
4. Prioritize and focus on the assignments I have to do to graduate and take boards. More focus means less time surfing the web and chatting over email and facebook. Unnecessary.
5. Exercise. Puppy walk x 1 hour every morning (except Mondays when I have to race in for grand rounds and take the pup to daycare). Other than that, I have got to find something I'm into that makes me sweat and doesn't cost a fortune. Maybe P90X
6. Herbs: Bacopa (god it tastes gnarly), St Johns Wort (mood and nervous system support - they can piss off about contraindications; I've done my research, I know the biochemical pathways & know this was blown out of proportion in the medical world), Nervines like passionflower, valerian, lemon balm and kava to aid in my stress response. Ginko & tumeric are contained in some things that I take to increase perfusion to cells and decrease inflammation.
I have to wait on detox in case I'm pregnant. I don't want to mobilize my toxins on purpose because there will already be quite a bit moved into my circulation and into my baby naturally when I start tapping into my tissues for nourishment, (I believe no matter how much you consume)
7. Financial Health - this has to do with stress. I need to really follow my budget (I've made it a few times, but when I'm hungry and didn't plan ahead, I spend quite a bit on food). I need to start making some money and seeking the opportunities that are abound. Should be easy as a doctor, right? How about a doctor that isn't playing the insurance game?
8. Wellness - paying attention to my relationships, walking outside without my shoes on in the sun, gardening, baths with essential oils 2xper week and taking time to relax. Cortisol and the effects of stress are hard on the brain.
That's off the top of my head. Now that I strongly suspect I am physically being impacted by a drug long term AND that the effects have been shown to be cumulative even in the research, my motivation has increased... by a lot. If I find out I'm pregnant this next week, a lot of things will change very quickly. Oh, I've sent my records to a neurology group - we'll see if the doc will tolerate me.
Get me off these drugs!
So it's been a while. I had a seizure in November as I got up in the morning for a Saturday seminar - the first biggy I've had in medical school; the first in 6 years. Ody saw most of it - thrashing around, blood coming out of my mouth & when I stopped breathing for what must have seemed like 10 minutes. He did really well and as he explained that I had a seizure over and over to my bewildered self he let me text my colleagues to tell them I couldn't do the seminar. Ody went to get cartoons, which I vaguely remember seeing since talking about it months later: Toy Story II and How to Train Your Dragon.
I believe I had cut my little poison pills down in half again at this point - perhaps a month or two before the seizure. I should have been keeping track with this blog, but I didn't want to bore you... which is silly. So, I was on a very sporadic 25mg two times/day. That's 1/4 of a pill - high margin of error.
Of course now I'm on 50mg bid (2x/day) and it's easier to chop. I have no neurologist and actually haven't technically been to see one in many years... I think my last exam was 4 years ago, but I have my ways of refilling and haggling with MAs who insist I come in. I'm going to be a doctor in 33 days, so I respect not wanting to have your patient unguided and unsupervised on your treatment plan, but the patient part of me feels a different way. What will happen with the next neuro I see? He (we'll assume as I've only had male docs so far) will frown upon my efforts that are so common amongst us with epilepsy to get off the drugs. He will test my blood levels and say that they are insufficient for a therapeutic dose and that I must take more. I will say no. He will say he will fire me if I don't because that is what he truly believes would be best for me.
Well, I truly know that it is not best for me.
New twist: pregnancy.
So, I was pregnant in August for a very short time and he/she decided it was a no-go. That was rattling since when you get pregnant, your whole view changes into a motherhood mode - planning what type of diapers you will buy, how you will afford anything but Top Ramen and which school you will choose for them. Then nothing happens and you go back to what you were doing. Very odd. Well, might be pregnant again - I'll spare you the details, but I'm 31 years old and there's a part of me that wishes I hadn't chose to go into medicine. You give up so much of your life. I might be just as happy working at the mill of my home town learning medicine for my family through herbal books and nutrition websites. I would have a family, a house, a retirement plan and I would not owe a quarter of a million dollars in debt (I've accrued over $17,000 in interest just while I've been in school).
So I've been doing my research and I've written an ebook on preventing neurological defects in your unborn child - all the supplements and lifestyle factors that will work to improve the development of the embryo. That's all fine and dandy until I started looking into my lamotrigine again. The approach I have found on PubMed is more of a "Well, it does seem to increase the chances that the baby will be born without a face by 3%, but I'm sure every other baby is fine." You have no idea what you are doing.
Now, I'm not saying that if a mother has seizures every day that that is a fine alternative to medication - cutting off oxygen supply may be pretty harmful (although people smoke while they're pregnant that that does the same thing for a longer period of time). Every case is different, although we are all treated the same.
But I believe off drugs I average a seizure every 6 months WITHOUT any lifestyle modifications. That is when I didn't think that drinking, staying up late and consuming large amounts of pizza, bagels and coffee would do anything for seizures. Think it would be worth it to me to have a lower IQ baby? Maybe one with autism or early onset Parkinsons? Nothing like that is studied - only physical defects that can't be ignored.
I stumbled upon a side effect that I had no idea existed (not surprising). Lamotrigine binds to melanin. This can cause blurry vision and changes in the retina - an area rich in this pigment. Know what else has melanin? Basically anything dark, like the many moles that are continuing to pop up all over my body making me nervous that I have melanoma. Know where else? Hair.
I'm always saying that the way I am naturally is beautiful. Take it or leave it because I'm not changing it. I used to dye my hair and then I thought, "You know, it's just the way I am" Gray at 30 doesn't run in my family, but I'm also the shortest and the only one with a neurological disorder, so maybe that's just me. Well, actually, long term lamotrigine can cause loss and graying of hair as it binds strongly to melanin and strangulates healthy cells that produce pigment. So all this time when people think that I'm Ody's mom (we're the same age), when he gets carded for wine and I don't, when people say "Oh, I wasn't expecting your wife to be so... old" could all be because I am carrying a toxic load of a pharmaceutical.
Know what else it causes? Arrhythmias and damage to your heart. I'm sorry, but with cardiac problems being far and away the most common killer in this country, I'd rather not have something else leading me there. I've been having premature ventricular contractions since last year. It's an uncomfortable flopping of my heart as it struggles to reset its rhythm in class - very distracting. Don't mess with the heart. I'd MUCH rather have arrhythmia of the brain and flop around every once in a while than take this poison.
Know how they discovered folic acid was necessary for pregnancy and why it is in all of our processed food? Because 9 out of 56 women with epilepsy taking drugs because they were told that was the best thing for them had major birth defects. 4 women had the screams and strain of labor leading to the death of their babies nearly immediately. The medical community furrowed their brows and thought, "Could nutrients matter??"
It's kind of like statin drugs used for lowering cholesterol and HMG-Coreductase inhibition. Hey dumbies, that enzyme you're knocking out does more than one thing and your depleting CoQ10, a crucial energy producer in each cell with mitochondria. But I guess you don't have studies yet, so prescribe away and see what happens, if you care to look. Never mind the reason why someone is producing cholesterol - just say it's genetics and look smart. Keep on thinking that the body is as straight forward as working on a car except you can take parts out and it still runs. How cool for you.
I am so annoyed at the medical establishment and their inability to treat people for cure. I have epilepsy = give me a drug for life. No one has stepped up to be a detective. That's what doctors should be to me; detectives, not mechanics looking at everyone like they have the same physiology & must just have a deficiency in a pharmaceutical.
I believe I had cut my little poison pills down in half again at this point - perhaps a month or two before the seizure. I should have been keeping track with this blog, but I didn't want to bore you... which is silly. So, I was on a very sporadic 25mg two times/day. That's 1/4 of a pill - high margin of error.
Of course now I'm on 50mg bid (2x/day) and it's easier to chop. I have no neurologist and actually haven't technically been to see one in many years... I think my last exam was 4 years ago, but I have my ways of refilling and haggling with MAs who insist I come in. I'm going to be a doctor in 33 days, so I respect not wanting to have your patient unguided and unsupervised on your treatment plan, but the patient part of me feels a different way. What will happen with the next neuro I see? He (we'll assume as I've only had male docs so far) will frown upon my efforts that are so common amongst us with epilepsy to get off the drugs. He will test my blood levels and say that they are insufficient for a therapeutic dose and that I must take more. I will say no. He will say he will fire me if I don't because that is what he truly believes would be best for me.
Well, I truly know that it is not best for me.
New twist: pregnancy.
So, I was pregnant in August for a very short time and he/she decided it was a no-go. That was rattling since when you get pregnant, your whole view changes into a motherhood mode - planning what type of diapers you will buy, how you will afford anything but Top Ramen and which school you will choose for them. Then nothing happens and you go back to what you were doing. Very odd. Well, might be pregnant again - I'll spare you the details, but I'm 31 years old and there's a part of me that wishes I hadn't chose to go into medicine. You give up so much of your life. I might be just as happy working at the mill of my home town learning medicine for my family through herbal books and nutrition websites. I would have a family, a house, a retirement plan and I would not owe a quarter of a million dollars in debt (I've accrued over $17,000 in interest just while I've been in school).
So I've been doing my research and I've written an ebook on preventing neurological defects in your unborn child - all the supplements and lifestyle factors that will work to improve the development of the embryo. That's all fine and dandy until I started looking into my lamotrigine again. The approach I have found on PubMed is more of a "Well, it does seem to increase the chances that the baby will be born without a face by 3%, but I'm sure every other baby is fine." You have no idea what you are doing.
Now, I'm not saying that if a mother has seizures every day that that is a fine alternative to medication - cutting off oxygen supply may be pretty harmful (although people smoke while they're pregnant that that does the same thing for a longer period of time). Every case is different, although we are all treated the same.
But I believe off drugs I average a seizure every 6 months WITHOUT any lifestyle modifications. That is when I didn't think that drinking, staying up late and consuming large amounts of pizza, bagels and coffee would do anything for seizures. Think it would be worth it to me to have a lower IQ baby? Maybe one with autism or early onset Parkinsons? Nothing like that is studied - only physical defects that can't be ignored.
I stumbled upon a side effect that I had no idea existed (not surprising). Lamotrigine binds to melanin. This can cause blurry vision and changes in the retina - an area rich in this pigment. Know what else has melanin? Basically anything dark, like the many moles that are continuing to pop up all over my body making me nervous that I have melanoma. Know where else? Hair.
I'm always saying that the way I am naturally is beautiful. Take it or leave it because I'm not changing it. I used to dye my hair and then I thought, "You know, it's just the way I am" Gray at 30 doesn't run in my family, but I'm also the shortest and the only one with a neurological disorder, so maybe that's just me. Well, actually, long term lamotrigine can cause loss and graying of hair as it binds strongly to melanin and strangulates healthy cells that produce pigment. So all this time when people think that I'm Ody's mom (we're the same age), when he gets carded for wine and I don't, when people say "Oh, I wasn't expecting your wife to be so... old" could all be because I am carrying a toxic load of a pharmaceutical.
Know what else it causes? Arrhythmias and damage to your heart. I'm sorry, but with cardiac problems being far and away the most common killer in this country, I'd rather not have something else leading me there. I've been having premature ventricular contractions since last year. It's an uncomfortable flopping of my heart as it struggles to reset its rhythm in class - very distracting. Don't mess with the heart. I'd MUCH rather have arrhythmia of the brain and flop around every once in a while than take this poison.
Know how they discovered folic acid was necessary for pregnancy and why it is in all of our processed food? Because 9 out of 56 women with epilepsy taking drugs because they were told that was the best thing for them had major birth defects. 4 women had the screams and strain of labor leading to the death of their babies nearly immediately. The medical community furrowed their brows and thought, "Could nutrients matter??"
It's kind of like statin drugs used for lowering cholesterol and HMG-Coreductase inhibition. Hey dumbies, that enzyme you're knocking out does more than one thing and your depleting CoQ10, a crucial energy producer in each cell with mitochondria. But I guess you don't have studies yet, so prescribe away and see what happens, if you care to look. Never mind the reason why someone is producing cholesterol - just say it's genetics and look smart. Keep on thinking that the body is as straight forward as working on a car except you can take parts out and it still runs. How cool for you.
I am so annoyed at the medical establishment and their inability to treat people for cure. I have epilepsy = give me a drug for life. No one has stepped up to be a detective. That's what doctors should be to me; detectives, not mechanics looking at everyone like they have the same physiology & must just have a deficiency in a pharmaceutical.
Saturday, August 28, 2010
Face Pop Results
I went to get my nasal specific and an incredibly unexpected thing happened. I was cured of my epilepsy? No, not yet, although it probably helped.
I showed up to be the second demo subject for a lesson on technique. One of my favorite instructors/doctors who I trust, (this is big, since having a nasal specific requires such foreign invasion), did the first middle concha. (you'll remember from the previous anatomy explanation). This is the easiest and less invasive... perhaps the one that most grade school boys use as pencil holders to horrify adults.
Anyway, it was as traumatizing as I thought it would be - just get up the guts to have your face moved, that's all. I did hear it crunching around and there was a spastic "Get this thing out of my head" moment each time.
Then to the superior concha (upper). The right side was too small for the balloon to fit into, which was uncommon. If he'd had a smaller balloon, he may have been able to get into the space, but not that day. The left was larger and he was able to get the device inserted.
One, two pumps and a quick release - just as before. But it wasn't the same this time.
I think there was a short pause before my mind and being was filled with sadness. A deep sadness that was so unexpected. I felt sudden tears well up and my face contorted with agony.
"She's not feeling pain..." my doctor said to the group, "This isn't physical pain."
There were about 12 other medical students in the room, but my friend Emily, who was holding my hand said, "It's o.k., let it out. Just let it go."
I love Emily.
So I did. I cried and cried there on the table with all sorts of people, most who I didn't know all that well, hiding my face in my hand. After a few minutes, which must have been a really long time for those awkwardly watching. My doctor talked quietly to the group about points to hold on a patient's head when they have some kind of PTSD to make them feel more grounded.
I said, "Wow..." At least I hadn't peed all over myself - that would have been another option.
"Wow what?" The doctor asked.
I fumbled for words, "Uhhh... that was... a strong reaction." I blotted my running mascara and red eyes as my colleagues softly chuckled a little.
"When you're ready, we'll do the lower ones."
I was shocked. Hadn't I been through enough? Good God man, you're a maniac! I wanted it done though, so after getting my breathing under control and coming back into the classroom, he did the inferior conchas. These made me cry out a little because they're so close to the back of your throat it's a reaction. I tongued the inside of my mouth where the bone had just moved - it was pretty sore.
After that, although I had wanted to learn the technique, I couldn't concentrate. My doc said that I should try to stick around so he could teach me, but I was in emotional shock. Totally bewildered and needing some reflection. Where did THAT come from?? He said it was a good spot to move.
We went into another room as the students practiced because he offered a "clearing technique" using EFT. In this technique he asked what I remembered; why was I crying? Since I didn't know he said, "If you could finish this sentence, what would you say right now, feeling how you feel:
'I really want to let go of the feeling of __________"
Big experience. I still have to go back for that asymmetrical right side. I'm highly suspicious of a reaction to it... emotionally. But hey, if that emotional issue is stuck in between my bone, get it out of there!
I've fallen off the wagon with my diet again though, so I feel a little too inflammatory to do it right now.
Oh yeah, I've been doing a research study at the hospital that I finished... hopefully. There were about 10 epilepsy patients who let us poke and prod for an entire day hooked up to the EEG and equipment. I worked hard to get the last of the data input today!
Sunday, August 1, 2010
Nasal Specific Therapy
This Friday I go in for a "nasal specific".
This is a procedure in which a balloon is inserted far up into the nose into the conchae of the nasal cavity. If you've ever seen a kid stick a pencil wa-a-a-a-ay up his nose and wondered where in the world it was going, that's where.
You can see in the picture that the bone in the back, the sphenoid bone, is right next to the brain. The skull is made up of many bones, each with a little bit of motion. If you get hit with a baseball bat or come out of the birth canal awkwardly, these bones can move into abnormal positions like any other bones can.
So the nasal specific technique gets more involved, so read on.
At the annual convention in 2009, a naturopathic physician presented a case of a young girl with uncontrolled epilepsy that he had successfully done two nasal specifics for, resolving her seizures entirely. She came up on stage and everyone applauded. A malformation or an irritation on the brain can cause seizures and it seems that it what she had, for one reason or another.
Back to the technique.
The deflated balloon is inserted up into the nose far into one of the 6 cavities (3 on each side). It's attached to a pump, like the ones you see on a blood pressure cuff. The practitioner holds your forhead and squeezes your nostrils closed. Then, there's a sudden burst of air (usually 2 when I have seen it) and a quick deflation.
It's quite violent, actually, because the body can't help but react to this pressure that feels so inconducive to life. I mean, really, when does your inner cranium feel that unless you've just had major trauma to your face? The patient's legs bounce on the table and they sometimes make a small cry. They might hear cracking as the bones of their skull shift back into place and it can be painful. Definitley weird. Then they tear up reflexively, stunned and assessing the situation. In a matter of minutes, a large bolus of mucous that's been stuck up in one of the sinuses will commonly slide down and they'll have to spit it up.
Then 5 more times.
I am not looking forward to it, but, hey, if it helps people, I should try it on myself and then see if my hands develop the authority to do it on someone else.
I'm taking some major nervine herbs before that, I'll tell you.
Monday, March 1, 2010
Homeopathy... surprise!
I walked out of the consult room after discussing a possible treatment plan for our patient with a constellation of symptoms. I was the assistant today and we were about to suggest some frightening laboratory tests
Angela rushed around the corner, her white coat filleted behind her. "Dr. Brigsby is looking all over for you!"
"Wha?" I turned around, as did my primary acting doctor, the resident and doctor, (who happens to be my hero).
"He's looking all over for you," she continued, out of breath, "You had an appointment and he's looking for you."
...
um...
I looked at my hero. A-a-a-awkward. Did I mention that I had just applied for his mentor shift for next year, which is extremely difficult to get? He grinned. Oh God, what does that mean.
So, I went back to the room trying to process, let go of my patient, (I'm only an assistant, but I'm still invested in my patients), decide between looking like an idoit for leaving the shift, (though now I wasn't necessary as that was our last patient), or completely inconsiderate by canceling an appointment that I had to be waitlisted on for a month and a half?
"Just go," whispered an upperclassman, "He doesn't care."
I asked if I could go and he said I wouldn't get the clinic hours for being there that day. I went downstairs, taking off my white coat and struggling to change into a patient.
Dr. Brigsby smiled warmly as I entered and apologized profusely, "These things happen, these things happen - go ahead and have a seat" He has a bushy well groomed beard and glasses that sit half way down his nose. "O.k., let's get started. What would you like to tell me?"
"...about me or why I'm here or..."
"Just tell me."
Ah yes, I know this strategy. Usually, a patient will tell you everything you need to know within the first 5 minutes if you just let them run with it. They'll cover most of the structured questions you would have asked and very often questions you wouldn't have thought to ask. For homeopathy, the things that are important are the aspects of life that the patient finds are emphasized in their mind. It's crucial to see how a patient looks at a situation.
So, I told him about seizures, night terrors, my triggers, what it feels like and the intense, worse-than-death terror that paralyzes me right before I lose consciousness. I told him about growing up in my non-ideal situations, but what I found surprising is that he didn't want to know what injustices happened to me but how I reacted to them, how I felt about them. He wanted to know about the bed I used to hide under and draw on the underside of the cardboard bottom. He wanted to know where I went to cry and why. He wanted to know about my dreams and fears.
With all my studies of homeopathy in a classroom setting, it was a LOT different than being a patient. It is quite a bit more uncomfortable to have someone asking you for the first time how you felt when things were going on and "tell me more about that". Ack! What? I've never thought of how I feel about that or why I reacted like that.
So, after a little over an hour he said, "O.k., I think I have enough. Anything else?" (Which I think was more of a polite gesture being that he already had enough information).
I headed back up to the conference room where I tried to become a student doctor again discussing how bananas inhibit phospholipase and are contraindicated (bad for) people with asthma as a result.
I'm keeping in mind that he will see enough of me to get the best constitutional remedy. To think anything else would be self destructive because I think in homeopathy a bit of intention involved.
Angela rushed around the corner, her white coat filleted behind her. "Dr. Brigsby is looking all over for you!"
"Wha?" I turned around, as did my primary acting doctor, the resident and doctor, (who happens to be my hero).
"He's looking all over for you," she continued, out of breath, "You had an appointment and he's looking for you."
...
um...
I looked at my hero. A-a-a-awkward. Did I mention that I had just applied for his mentor shift for next year, which is extremely difficult to get? He grinned. Oh God, what does that mean.
So, I went back to the room trying to process, let go of my patient, (I'm only an assistant, but I'm still invested in my patients), decide between looking like an idoit for leaving the shift, (though now I wasn't necessary as that was our last patient), or completely inconsiderate by canceling an appointment that I had to be waitlisted on for a month and a half?
"Just go," whispered an upperclassman, "He doesn't care."
I asked if I could go and he said I wouldn't get the clinic hours for being there that day. I went downstairs, taking off my white coat and struggling to change into a patient.
Dr. Brigsby smiled warmly as I entered and apologized profusely, "These things happen, these things happen - go ahead and have a seat" He has a bushy well groomed beard and glasses that sit half way down his nose. "O.k., let's get started. What would you like to tell me?"
"...about me or why I'm here or..."
"Just tell me."
Ah yes, I know this strategy. Usually, a patient will tell you everything you need to know within the first 5 minutes if you just let them run with it. They'll cover most of the structured questions you would have asked and very often questions you wouldn't have thought to ask. For homeopathy, the things that are important are the aspects of life that the patient finds are emphasized in their mind. It's crucial to see how a patient looks at a situation.
So, I told him about seizures, night terrors, my triggers, what it feels like and the intense, worse-than-death terror that paralyzes me right before I lose consciousness. I told him about growing up in my non-ideal situations, but what I found surprising is that he didn't want to know what injustices happened to me but how I reacted to them, how I felt about them. He wanted to know about the bed I used to hide under and draw on the underside of the cardboard bottom. He wanted to know where I went to cry and why. He wanted to know about my dreams and fears.
With all my studies of homeopathy in a classroom setting, it was a LOT different than being a patient. It is quite a bit more uncomfortable to have someone asking you for the first time how you felt when things were going on and "tell me more about that". Ack! What? I've never thought of how I feel about that or why I reacted like that.
So, after a little over an hour he said, "O.k., I think I have enough. Anything else?" (Which I think was more of a polite gesture being that he already had enough information).
I headed back up to the conference room where I tried to become a student doctor again discussing how bananas inhibit phospholipase and are contraindicated (bad for) people with asthma as a result.
I'm keeping in mind that he will see enough of me to get the best constitutional remedy. To think anything else would be self destructive because I think in homeopathy a bit of intention involved.
Thursday, February 18, 2010
I had Cake
O.k., this isn't the same cake - this one was from a few months back with some lovely wine and a chess game. What I had this time was a fatty piece of gluten saturated, sugary goodness with a mass amount of coffee. I was so depressed... I pretty much still am, but that was 'jump off a bridge light contemplation' mood.
I feel very overwhelmed. I opted for the cake over acupuncture because I forgot to make an appointment & it was just too much for me. Then my friend said, "You should go get acupuncture." Then it really didn't appeal to me.
It's funny - without Anna & Sarah investing their time and energy into me, it would be a lot easier for me just to quit this whole epilepsy cure thing and live like everyone else for a while with medication. But then, my 67 year old self wouldn't like that option. Just gotta work on self preservation at the same time as cure, if that makes any sense.
Saturday, February 6, 2010
Acupuncture and Craniosacral Therapy
I had more acupuncture and Chinese herbs on Wednesday between work and classes. Sarah, my friend and student practitioner, needled different points under a different doctor. These hurt less. The first doctor was from China and this one is a Westerner. I felt like I communicated more with this one, but he looked at my tongue less.
I realized that I twitch when I have needles in me. I thought I may have been imagining it the first time, but it's quite apparent that something about the situation makes my body spasm. I try to imagine laying there without needles in me - same room and conditions - and I really don't think I'd twitch like that. You know when you're falling asleep and your limbs hop around a bit trying to test out if they're truly still attached. Probably happens more due to a lack of exercise; a silent musculoskeletal protest. Anyway, it's an interesting phenomenon.
On Friday, my good friend Anna gave me a cranial sacral & Swedish massage between classes and clinic. She's a professional masseuse and herbalist who ended up here on a quest to be a naturopathic physician. It's a sweet combination of life experience.
Cranial Sacral Therapy is a type of bodywork that I hadn't considered for my epilepsy cure regimen until she mentioned it.
Mind you, as with all therapies with the exception of medications, (which, I might add, YOU are a scientific experiment for being that most studies evaluate effects at 6-9 months & not long term to get on the market for cash flow), this one is disputed. You read a Wiki article on Craniosacral and you may notice "they say" statements. I find it disappointing that drugs that end up killing people do not express the same hypothetical-based language.
Anna was able to feel that my dura felt a bit tight. She's felt hundreds of bodies in her work as a massage therapist developing a skill of touch that one can't learn in the books of medical school, even naturopathic, as it takes time. I've watched brain surgeries before, the waves of cerebral spinal fluid pulsating with the beat of the aorta, and appreciate the need for adequate CSF circulation. She stretched my neck by curling her fingers around the base of my skull and just holding that tension. I felt my head sink closer to her fingers in about a minute and a half. It felt really nice AND a soft pop happened somewhere behind my face - likely in the sphenoid bone. Not sure what pulled that, but I'll buy that for a dollar.
Oh - and Anna spent an hour massaging me without any compensation. I have to figure out something to do for her, jeez.
Both of these therapies make it obvious to see how hard it is to shut my brain off. Thoughts of projects, how to thank the person giving me treatment, things to chat about, the future, the past and other random, "I wonder where they got that clock" thoughts are a constant barrage. It's obscene. Last night as I was falling asleep I heard chaos in my head - not true sound, but sort of the thought of sound. Stressful. I had to shut it off and focus on my belly breathing. So, I try to focus on the movement, healing each cell in my body through chemical and energetic mediators. It's a VERY different thing to concentrate on healing instead of everything else I have to do.
I've also started to walk or do yoga every morning. This one is slow going, lemme tell ya. I tape my medical school lectures, so I can justify the time walking. Yoga takes more focus though and I'm pretty much toppling over on a regular basis when attempting to contort my body and hold it there. Free though - better than money in a gym. I'm starting with 20-30 minutes.
So, the quest continues for my cure. I continue to palliate my issue with lamotrigine, but I've worked down to half the dose I'm supposed to be on; from 300mg to 150mg, in the last year. I was really disappointed when not a naturopath, homeopath or allopath would take me off of my medications, but I just recognized something - unlike my first neurologist who said he'd fire me as a patient if I came off of my medications, the doctors I'm seeing at the naturopathic college simply tell me not to and document like crazy that they said not to come off of my meds under their care. They still manage treating my entire body and mind as a unique case. If nothing more, they prevent further pathology and illness. In reality, I think the doctors there think I may be able to do it - depending on my individual case and motivation to change my lifestyle - but they have to cover their asses in this sue-happy world. Honestly, if they said 'yes, go ahead' and I had a seizure on a pitchfork I'd have to say that I was the one who went through with it. It's irresponsible to trust your doctor unconditionally - they're all human. They should never make decisions for you.
I believe I've never quite committed myself to making big changes to address the cause of my epilepsy. I lean on Lamictal because I like to drink occasionally, stay up late studying, eat whatever I want, turn away from mental/emotional issues I've accumulated and ignore what my body is trying to tell me is no good. I never made time until now. I'm getting more educated and motivated by the day. :)
I realized that I twitch when I have needles in me. I thought I may have been imagining it the first time, but it's quite apparent that something about the situation makes my body spasm. I try to imagine laying there without needles in me - same room and conditions - and I really don't think I'd twitch like that. You know when you're falling asleep and your limbs hop around a bit trying to test out if they're truly still attached. Probably happens more due to a lack of exercise; a silent musculoskeletal protest. Anyway, it's an interesting phenomenon.On Friday, my good friend Anna gave me a cranial sacral & Swedish massage between classes and clinic. She's a professional masseuse and herbalist who ended up here on a quest to be a naturopathic physician. It's a sweet combination of life experience.
Cranial Sacral Therapy is a type of bodywork that I hadn't considered for my epilepsy cure regimen until she mentioned it.
Mind you, as with all therapies with the exception of medications, (which, I might add, YOU are a scientific experiment for being that most studies evaluate effects at 6-9 months & not long term to get on the market for cash flow), this one is disputed. You read a Wiki article on Craniosacral and you may notice "they say" statements. I find it disappointing that drugs that end up killing people do not express the same hypothetical-based language.
Anna was able to feel that my dura felt a bit tight. She's felt hundreds of bodies in her work as a massage therapist developing a skill of touch that one can't learn in the books of medical school, even naturopathic, as it takes time. I've watched brain surgeries before, the waves of cerebral spinal fluid pulsating with the beat of the aorta, and appreciate the need for adequate CSF circulation. She stretched my neck by curling her fingers around the base of my skull and just holding that tension. I felt my head sink closer to her fingers in about a minute and a half. It felt really nice AND a soft pop happened somewhere behind my face - likely in the sphenoid bone. Not sure what pulled that, but I'll buy that for a dollar.
Oh - and Anna spent an hour massaging me without any compensation. I have to figure out something to do for her, jeez.
Both of these therapies make it obvious to see how hard it is to shut my brain off. Thoughts of projects, how to thank the person giving me treatment, things to chat about, the future, the past and other random, "I wonder where they got that clock" thoughts are a constant barrage. It's obscene. Last night as I was falling asleep I heard chaos in my head - not true sound, but sort of the thought of sound. Stressful. I had to shut it off and focus on my belly breathing. So, I try to focus on the movement, healing each cell in my body through chemical and energetic mediators. It's a VERY different thing to concentrate on healing instead of everything else I have to do.
I've also started to walk or do yoga every morning. This one is slow going, lemme tell ya. I tape my medical school lectures, so I can justify the time walking. Yoga takes more focus though and I'm pretty much toppling over on a regular basis when attempting to contort my body and hold it there. Free though - better than money in a gym. I'm starting with 20-30 minutes.
So, the quest continues for my cure. I continue to palliate my issue with lamotrigine, but I've worked down to half the dose I'm supposed to be on; from 300mg to 150mg, in the last year. I was really disappointed when not a naturopath, homeopath or allopath would take me off of my medications, but I just recognized something - unlike my first neurologist who said he'd fire me as a patient if I came off of my medications, the doctors I'm seeing at the naturopathic college simply tell me not to and document like crazy that they said not to come off of my meds under their care. They still manage treating my entire body and mind as a unique case. If nothing more, they prevent further pathology and illness. In reality, I think the doctors there think I may be able to do it - depending on my individual case and motivation to change my lifestyle - but they have to cover their asses in this sue-happy world. Honestly, if they said 'yes, go ahead' and I had a seizure on a pitchfork I'd have to say that I was the one who went through with it. It's irresponsible to trust your doctor unconditionally - they're all human. They should never make decisions for you.
I believe I've never quite committed myself to making big changes to address the cause of my epilepsy. I lean on Lamictal because I like to drink occasionally, stay up late studying, eat whatever I want, turn away from mental/emotional issues I've accumulated and ignore what my body is trying to tell me is no good. I never made time until now. I'm getting more educated and motivated by the day. :)
Sunday, January 31, 2010
Choppity
I like to fluctuate my blood levels of anticonvulsant medication. It's fun.
So, I made a conscious decision to take 3/4 pill for the next few weeks. That cuts me down by a very rough estimate of 50mg/day. I have to get through midterms anyway and that's a lot of stress.
Friday, January 29, 2010
Bummer.
Ugh.
I am so tired and down - just was reminded that I actually don't function like a regular human being. It's fun to pretend and all...
I tapered myself off another 100mgs. Fast taper, I know - maybe I should have waited a week to come down from 1 pill to 3/4 of a pill. I got impatient and lazy about chopping. If I knew it was going to chop the same quantity consistently, perhaps this would be more appealing.
My argument for discontinuing my medication, like most people with chronic medications for the brain, was that it isn't doing anything, it's expensive, provides inconvenient dependence and doesn't make you feel great. I don't have too many side effects, if at any, to complain about except for the fact that I know the pathways in the body that are effected by my drugs now. It's troublesome being dependent - like when I nearly got snowed in in Boston this year and didn't have a weeks worth of pills on me.
I went to a seminar today on natural treatments of women's cancers, came home and started to cook. Quaint, not a lot of stress. But as I tipped my head back to take a drink of my fiber detox concoction, ZAP!
I had brown chunky fiber all over my chest. I stood there in disbelief. I totally forgot about the myoclonis - the very thing I believe my doctor was actually treating. I kind of lumped it together; myoclonis was a step to the mac daddy. It's just a warning sign. As the brown liquid dripped slowly onto the kitchen floor, reality sunk in.
Usually, my myoclonis is subtle with an eerie feeling of wrongness. That means I should get back to bed or whatever and it's usually in the morning. This was entirely night time, not tired, feeling relaxed AND, the biggest part, it was not subtle. What if I spilled all over myself every day? What if I threw my laptop? What if I was driving along??
Sucks.
Maybe it's because:
I pushed the tapering too fast
I had plenty of sugar
I had plenty of coffee
I ate bread (gluten)
I got up early
I used a lot of brain power at the seminar
I... I... well, it wouldn't have happened if I were on my pills the way I have been for years and that I know. I was reminded today that these pills are doing something - even if it feels like I'm completely normal and they're the problem.
:(
So, I'm going to have some rose hip and peony root tea while I do a castor oil pack and think about my next move. I was so excited - a whole list of things, plans, etc. What a reminder.
I am so tired and down - just was reminded that I actually don't function like a regular human being. It's fun to pretend and all...
I tapered myself off another 100mgs. Fast taper, I know - maybe I should have waited a week to come down from 1 pill to 3/4 of a pill. I got impatient and lazy about chopping. If I knew it was going to chop the same quantity consistently, perhaps this would be more appealing.
My argument for discontinuing my medication, like most people with chronic medications for the brain, was that it isn't doing anything, it's expensive, provides inconvenient dependence and doesn't make you feel great. I don't have too many side effects, if at any, to complain about except for the fact that I know the pathways in the body that are effected by my drugs now. It's troublesome being dependent - like when I nearly got snowed in in Boston this year and didn't have a weeks worth of pills on me.
I went to a seminar today on natural treatments of women's cancers, came home and started to cook. Quaint, not a lot of stress. But as I tipped my head back to take a drink of my fiber detox concoction, ZAP!
I had brown chunky fiber all over my chest. I stood there in disbelief. I totally forgot about the myoclonis - the very thing I believe my doctor was actually treating. I kind of lumped it together; myoclonis was a step to the mac daddy. It's just a warning sign. As the brown liquid dripped slowly onto the kitchen floor, reality sunk in.
Usually, my myoclonis is subtle with an eerie feeling of wrongness. That means I should get back to bed or whatever and it's usually in the morning. This was entirely night time, not tired, feeling relaxed AND, the biggest part, it was not subtle. What if I spilled all over myself every day? What if I threw my laptop? What if I was driving along??
Sucks.
Maybe it's because:
I pushed the tapering too fast
I had plenty of sugar
I had plenty of coffee
I ate bread (gluten)
I got up early
I used a lot of brain power at the seminar
I... I... well, it wouldn't have happened if I were on my pills the way I have been for years and that I know. I was reminded today that these pills are doing something - even if it feels like I'm completely normal and they're the problem.
:(
So, I'm going to have some rose hip and peony root tea while I do a castor oil pack and think about my next move. I was so excited - a whole list of things, plans, etc. What a reminder.
Sunday, January 24, 2010
I came to a disappointing conclusion the other day. No one will actually take me off of my medications. Maybe I have this opinion because I'm haunted by my juvenile experience with my neurologist who said I'd be on them for life. I'm probably overly sensitive to the 5 doctors who told me they wouldn't. Still, I have discovered that the majority of doctors, even those skilled with decades of healthcare behind them, will not take on the liability of a non-medicated Epileptic. It doesn't matter the type, circumstance or what have you. I am a convulsion waiting to happen. That is my very being.
SO, that's unfortunate. I thought, "o.k., I'm being impatient. I haven't been good about my diet, sleep, caffeine... well nothing's perfect. Maybe I will wait for all that."
Today I looked at my bank account though. I don't have $400 to refill my prescription. (One more reason for socialized healthcare, right? I strongly disagree) What I CAN do though, is buy a $12 tincture of herbs that work on the same neurotransmitter receptor. In order to have enough time for delivery of drugs (from our neighboring country) if I start convulsing again, I'm going to have to make a decision fast.
Against doctors orders, I previously cut down my meds by 100mg. That's significant because I was only on 300mg. Now I'm on 200mg, which is pretty tiny. Typical dose is 100-400mg WITH another type of anticonvulsant, which has shown a reduction in seizures in this study. I liked this assessment, which was geared at rejoicing for the fact that you can give a 2 year old more mind altering drugs as it is used as an adjunctive therapy to others. Now lets look at something though:
Now, that's great and all, but would you look at that placebo!!! Holy cow - does no one notice the power of the mind has 43% effect in lowering your seizures!
That's awesome. THE most natural medicine there is - our body/mind, doing it's thing.
This study gives me hope that with a little bit of nervine herbs and some good old fashioned belief, I can come off of my meds sooner than later.
Because of the reaction I received from people in my life, I have chosen not to tell them anymore. They know my intention at some point, but the last thing I need is for everyone to ask, "How are you doing today" while they eye me suspiciously for signs of death. I think that their thoughts really do impact the way things turn out - a massive intention experience. Perhaps it's just that I pick up on the tone in the air and my subconscious churns out doubt.
I'm going for it.
SO, that's unfortunate. I thought, "o.k., I'm being impatient. I haven't been good about my diet, sleep, caffeine... well nothing's perfect. Maybe I will wait for all that."
Today I looked at my bank account though. I don't have $400 to refill my prescription. (One more reason for socialized healthcare, right? I strongly disagree) What I CAN do though, is buy a $12 tincture of herbs that work on the same neurotransmitter receptor. In order to have enough time for delivery of drugs (from our neighboring country) if I start convulsing again, I'm going to have to make a decision fast.
Against doctors orders, I previously cut down my meds by 100mg. That's significant because I was only on 300mg. Now I'm on 200mg, which is pretty tiny. Typical dose is 100-400mg WITH another type of anticonvulsant, which has shown a reduction in seizures in this study. I liked this assessment, which was geared at rejoicing for the fact that you can give a 2 year old more mind altering drugs as it is used as an adjunctive therapy to others. Now lets look at something though:
Now, that's great and all, but would you look at that placebo!!! Holy cow - does no one notice the power of the mind has 43% effect in lowering your seizures!That's awesome. THE most natural medicine there is - our body/mind, doing it's thing.
This study gives me hope that with a little bit of nervine herbs and some good old fashioned belief, I can come off of my meds sooner than later.
Because of the reaction I received from people in my life, I have chosen not to tell them anymore. They know my intention at some point, but the last thing I need is for everyone to ask, "How are you doing today" while they eye me suspiciously for signs of death. I think that their thoughts really do impact the way things turn out - a massive intention experience. Perhaps it's just that I pick up on the tone in the air and my subconscious churns out doubt.
I'm going for it.
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