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:

• 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.

I'm taking the tincture 60 drops twice a day with a straight bacopa tincture 30 drops in the middle of the day. Nearly every herb is contraindicated in pregnancy by default in America, but I really think that's poor logic. Just because it's a plant doesn't mean it can't cause harm, but I'm doing my best to support my brain as I come off the meds that I KNOW cause harm. People have been taking herbs as medicine for thousands of years & my research hasn't found solid evidence to not take them.

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...

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.

Pregnant... !

Um... uh... let's see here... o.k.... well, that's motivation.

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:

• 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

Mine was more like this:

• 150 mg for years
• 100 mg for 1 year
  
• 50 mg for 3 months --> seizure
  
• 100 mg for 7 months
  

Since it takes weeks to change the level in your body (at least), perhaps I will try 75mg whilst cracking down on my lifestyle. What lifestyle?

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.

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 __________"

Everyone has their own answer to this. EFT (Emotional Freedom Technique) concentrates on stimulating Chinese acupuncture points as you think about an issue. So, we took my feeling and worked with it. I don't know if it works - I was just befuddled at why I just lost total control over my emotions with no current reason in front of everyone. I cried off and on all day! That's a lot when you're not sure what you're crying about.

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!

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.