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.
Subscribe to:
Posts (Atom)
