Would you take meds at this point?

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KelVarQ

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Hey all. I'm a bit bummed out this morning since my seizures are just not under control (no meds). I've implemented some of the ideas listed, but to no avail. My complex partials are like clock work, which makes me believe there's a pattern, hence trigger that I can't seem to figure out. It goes: Every four nights I'll have a seizure (in my sleep) and then I'll have 3 nights off. My husband was stopping the seizures (philtrum) but is now reluctant to see if they're getting worse, tonic clonic, and the last 2 nights he hasn't stopped them and they're still complex partials. He's beginning to think I should start meds because they're just not stopping nor does he think they will since he seems to know my seizures better than anyone and they're pretty consistent.

Obviously I'm reluctant to take the meds due to the unwanted side effects and I would like to have another child. I currently have Tegretol XR sitting in my cabinet (stopped the Keppra 3+ months ago) and never started the Tegretol XR. My neuro prescribed Keppra then Tegretol because he knows I want to get pregnant and said they would be the safest choice. (Not that I don't believe him, but of course I have doubts considering I know how they affect my brain.)

I'm not sure if I have a question but I feel like I do. I guess I already know one doesn't know the side effects until they take it and all the meds come with some risks in regards to pregnancy : ( I admit, I'm scared to take the meds but I'm also not liking the idea of having so many seizures. The consistency is making me perplexed because 4 nights seizure and 3 nights off. I'm keeping a log, but I can't seem to figure this out especially since they're in my sleep. Perhaps someone has a clue since I'm at my last rope in regards to trying to control them on my own. Thanks ALL
 
Hi Kel!

I just gave birth in July to a beautiful and healthy baby girl. I was on meds at the time of conception. I was on Depakote, and then changed to Dilantin when I was 8 weeks. There are some things you can do to minimize chances of birht defect.

1. Take 8 mg. folic acid per day. (helps reduce the chance of neural tube birth defects)
2. Eat a healthy diet. (6 times a day, proteins, vegetable, fruits, whole grains, and get rid of all sodas and things with processed sugars)
3. Exercise. (take walks if you can)
4. NO yardwork. ( If you love to garden, take the time to plan out next years garden.)
5. Get your support team in place and use it.( family and friends...people who can help you by helping get things done like cooking or cleaning house while your pregnant.)
6. Relax. ( As my neuro said, there's no such thing a sa totally safe med. But stress will do more harm than anything.)

Take a good prenatal vitamin. If you take Magnesium, continue to do so. If you don't you might want to start. It helps to relax you. It also is used to stop early contractions. Stay regular. (magnesium or prunes) If you take dilantin, you may have a hard time with calcium supplements. They tend to diminsh the absorption of the dilantin.
 
Kelly --

It can be hard to isolate a trigger sometimes -- there can be a lot of variables involved or more than one. In some cases the brain starts to change 24 or even 48 hours before the actual seizure. So you may need to look farther back. And if you've started making dietary changes and/or taking supplements the results might not show up for a few months.
 
What have you tried so far?
If nutritional changes are going to work, it isn't a quick fix. Even vitamin and minerals take about a month or two to see their effectiveness sometimes. I had a 30+ history with migraines. It took about 1-2 months for magnesium to help. I now have been migraine free for about 5 years.
 
Thanks All

Thanks for the kind replies. Skillefer, Congrats on the baby! That's fantastic news and thanks you for all the tips with pregnancy and E meds. I'm currently taking the folic acid, so that's good. I actually called my gyno today and asked about Tegretol XR and they responded, "It is not recommended to take Tegretol when pregnant" and I should ask my neurologist about what to take. Meanwhile, my neurologist told me Keppra (no way, tried it) and Tegretol are 2 of the safest. I'm obviously annoyed since I HATE that one doctor tells you one thing and another tells you another.

Nakamova: Thanks for telling me about looking ahead since I would've never thought to take that into consideration. I didn't realize the brain starts to change 24 to 48 hours prior, but I should've known considering during an EEG my neuro came in on Friday morning to tell me to watch my surroundings since I wouldn't make it through the weekend without seizing since he saw activity and sure enough Sunday night I had 2, including the tonic clonic.

Robin: Thanks for replying and I know you're excellent when it comes to the nutritional stuff. I've made some changes, but I know I don't have it right since I'm just confused about all the different diets and all the proper foods. The only thing I do have down is the magnesium (magnavulers packets - don't know spelling) before bed and coconut oil in my morning smoothie (smoothie: blueberries, fage yogurt, 1 peach, tsp. flaxseed, tsp. coconut oil, whey protein, splash of acai juice, splash of OJ and water).

If it's possible can you tell me what foods are O.K. to eat or where I can find a per se' menu? For example: When one says Gluten I don't even know what consists of that. I do buy Gluten Free Pasta and anything I can find that says Gluten Free, but I don't know if I'm totally sticking to it. I have added meat to my diet, not a vegetarian, was just never a big meat eater. All I need are a few basic items and I don't care I'll just eat that. I'm O.K. with eating a very limited menu and would prefer it since in this case less is better since it's not too confusing and I KNOW I'm doing the right thing rather than wondering if that one particular item may have had Gluten. I only drink water except for the occassional Decaf coffee (1x a week). I also know that I have to start eating more (small portions) 6x a day or so. Any feedback would be great, but I do realize you're busy so PLEASE no rush.

Thank you all again and I'm going to call the Gyno and ask them why they said NO to Tegretol and what would do they recommend for patients with E. I also know my neuro would be furious to know they told me that, especially since he said it's considered one of the safer ones! It would be nice if these specialists got TOGETHER along with the holistic specialists!!! UGH
 
Robin's the pro at the diet stuff, but here's a list from my brother (who has a gluten allergy):

Avoid these gluten-containing grains:

Wheat, Barley, Rye, Farina, Graham flour, Semolina, Durham ,Bulgur, Kamut, Kasha
Matzo meal, Spelt (a form of wheat). Oats are borderline -- often can be contaminated with wheat.


Avoid these items, unless you're sure they're made with gluten-free flour:

Breads, cereals, crackers, pasta, cookies, cakes, pies, soups, gravies, sauces (including soy sauce), salad dressings, beer, candy, processed luncheon meats


And these are the foods that are okay to eat:

Fresh meats, fish and poultry, most dairy products, fruits and vegetables, rice, potatoes, gluten free flours (rice, soy, corn, potato), wine and cider.

Hope this helps!
Best,
Nakamova
 
Good list Nakamova. There are oats that are guaranteed gluten free.

It is my opinion that you need to reduce refined grain products. Bulk up on veggies, non tropical fruits (the sweeter ones). I would also eliminate cow dairy for a minimum of three months to see if your body functions better without it. It is suggested to do so on the GFCF diet, along with soy and corn on the GARD diet.

Think about what your Great Great grandparents would have eaten and shop accordingly.
 
Oh. Just to clarify...when I got pregnant and saw my OB for the first time, he suggested to switch to Dilantin, as Depakote was a higher risk, and he had delivered lots of babies whose moms took Dilantin...So, if you can, make sure that your OB has experience working with moms with E.
 
Also ask about gabapentin (Neurontin) as it is classed as 'one of the safer AED's for pregancy'.
 
Kelvar, I

just received a book titled "Gluten-Free Diet" by Shelley Case (2008 version). It is the BOMB when it comes to gluten-free information.

I just got it in the mail a couple of days ago, and it's going to take me some time to digest all the information, but right now, just looking at it from a quick thumb through, there is soooooooo much good information.
 
Nakamova said:
And these are the foods that are okay to eat:

Fresh meats, fish and poultry, most dairy products, fruits and vegetables, rice, potatoes, gluten free flours (rice, soy, corn, potato), wine and cider.

Hope this helps!
Best,
Nakamova
Click to expand...

I once worked with some one who had celiac disease. She couldn't eat dairy. She also mentioned that when she ate something that she didn't know contained any wheat or dairy, she would have to eat four bananas plus pure, 'clean' liquids to set her right. No caffeine.
 
That book by shelly case is awesome, I got it off amazon a while back, only problem was I had to find a shop in the uk that sold american 'cup' measurers. Eventually got them from Lakeland, but I can assure you that the recipies I have cooked from there taste lovely.
 
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