Would you feel comfortable taking an extra med??

[lindsayschu2]

Any thoughts appreciated--I've had diarrhea for a week and after thought think that is the reason I'm having a breakthrough seizures and also migraines several times this week (lack of absorption--I'm on extended release versions of both my meds, Keppra and Topamax, which can't possibly be sticking around long enough for me to be absorbing as much as intended). I really hate calling in since I'm being seen by a large top-rated epileptologist group right now that is mostly used for second opinions (no regular neurologist until my problem is sorted, when I will find a new go-forward regular doc)--I'm wondering if you would feel comfortable adding another 500 mg Keppra for a day or two until the problem resolves. I'm having too much seizure and migraine activity right now and still having diarrhea, though it's slowing down a little bit.

 

[Cint]

I would increase the Topamax, maybe 100 mgs, since it is also used for migraines. Call the doc if the seizures and migraine continue.

 

[masterjen]

I'd be reluctant to add more medication without my specialist's knowledge. What I have done, though, is divide my medication doses up differently. For example if on two different medications you take twice per day and normally you take them both at the same time, try spreading those four doses out so that you are taking them at different times through the day. Or, you could try dividing the doses of each individual medication so that you are taking them 3 times per day instead of two (or 4 times instead of three, etc.).

 

[lindsayschu2]

I can't add more Topamax since it's 200 capsule once daily and I'm definitely not comfortable adding that much (I get a lot of side effects with even slight increases with that one, no real side effects with Keppra at all). I'm already spreading Topamax in the am, and 500 keppra am, 500 pm. I'm considering adding a probiotic, super small dose to see how I do with it. I tried the whole Apple Cider Vinegar in water thing for a cleanse since it didn't interact with any meds or epilepsy-- and I think the acidity just didn't work for me and stripped out my system and caused this whole thing in the first place, though they say the acidity is supposed to actually alkanize. Sometimes I do stupid things in the name of improving my health. Maybe I just try the probiotic since I've read here some neuros recommend it, or just active yogurt, and ride this out until my system evens out. I probably messed up my own PH balance causing the diarrhea.

 

[Cint]

or just active yogurt, and ride this out until my system evens out.

Probably the best solution.

 

[Belinda5000]

I already take Tegretol,Topamax,Phenobarb and take meds for asthma,heart.
I've been on 23 different AEDs and I'm med resistant or to an entire family except original
tegretol. I wouldn't go on another drug.I'm refractory and I'm hopeless case right now.

 

[denverboz]

No Lindsay, as tempting as it may be, and with a very real possible chance that is what he could have you do, I would not do it. With the symptoms you're describing there is also a real chance he could just change your meds altogether. If your present meds are what is causing your problems, increasing your dosage could likely only make it worse. Talk to your doctor for advice and not a bunch of strangers with no medical expertise on an internet forum.

 

[kirsten]

I'm with Denver: regardless of how uncomfortable you feel calling your doc, do it. You know that idiom, "Feel the fear and do it anyway"? Well, feel the discomfort and do it anyway.

Lindsay, your body is an absolute disaster zone right now. You need intensive involvement from your doctors to get yourself on track again. Doctors are there to look after us, not only when we're responding well, but when we're in crises, too. Try your best to be kind to yourself, even if you're not feeling it. One of the kindest things you can do for yourself right now is to get what you've paid for from your doctors. We're their patients, of course, but we also need to keep in mind that we're their clients, and we pay them to do what they do. They aren't doing us favours when they take care of our health. If you hired a plumber to fix your leaking tap, and he tried to fix it but three days later it started flooding your house, would you call the plumber back or swim around your home for the rest of the month? Same thing.

 

[lindsayschu2]

I did end up calling earlier and he said he didnt think it was the ACV anyway--he thinks I have a stomach virus or bacterial gut infection and didn't recommend additional meds but rather getting the stomach problem figured out with my GP tomorrow. No I'm not fond of calling the doctor or going to the doctor and I know it's something I need to get over. But I really don't want to be a 'problem patient' calling for every issue so I call very infrequently for anything. He didn't seem particularly alarmed by my seizures but did see my point once I mentioned I was on all extended release meds and problems with absorption with diarrhea and told me to ask my GP for a level to see where I'm at and go from there. Sure miss the old days where no matter what happened I never had seizures!!

 

[Cint]

Lindsay,

Like Kirsten said, we are paying the dr. so if you are having a consistent problem, you do need to call your dr, especially if the seizures & migraines are increasing. You're not a 'problem patient'. I'm happy to hear you did call.

 

[valeriedl]

I thought it was diarrhea I had but when I told my neuro about it he said that it was runny stool. It could be caused by one of the meds that I take. I'm taking Depakote, Tegretol, Keppra and Lamictal.

 

[lindsayschu2]

I've had a very bad case of some stomach illness for two weeks and it most definitely messes with your med levels, not to mention electrolytes. I saw my GP on Tues as directed and she gave me faster acting version of Topamax and didn't order a level thinking that would fix the problem. After another week of severe diarrhea and high fevers I ended up with status myoclonus and severe dehydration and electrolyte problems. My son took me into the ER Friday and they gave me IV fluids, ativan to stop the myoclonus and drew blood--my Topamax was at 2.8 (down way below therapeutic and they forgot to test Keppra but probably the same), potassium was too low though I had been taking daily supplements and I was dehydrated--blood work was off on lots of markers. The doctor had put me on oral steroids for inflammation and swelling of my tongue and face, but the ER dr said that they suppress the immune system (making it harder to recover), reduce potassium, and can increase urination and dehydration, and had me stop. It's frustrating--you go to drs. to help but it's sometimes its counterproductive. I'm glad I overcame my fear of being a 'problem patient' and went to the ER Friday because my blood work was a mess and I really truly needed the help--I could barely walk a straight line or stand up without fainting. But I had gone to the dr on Tuesday and followed directions. I'm finally on the mend but what a long road this has been.

 

[lindsayschu2]

Oh and if Nak reads this--one weird lab reading they didn't comment on but that I'm curious about was that my Folate level was really high out of range--I don't take any kind of specially high levels of Folate (just a multi B), and my B12 was normal so it can't be related to pernicious anemia. They tested for bacterial gut infection and that was negative, and I see it can be related to that but that was negative. I'm curious if you know if high Folate is related to seizure meds somehow??

 

[kirsten]

How awful, Lindsay. I'm sorry you've had such a horrible time. I hope they can pin this problem down. It sounds as though they still aren't sure exactly what has caused the problem with your stomach and your swelling. This seems crazy. A physician (along with your neuro) might be a good bet. When things like this pop up, where you can't tell what the hell is going on, physicians have a good, broad knowledge base to work with.

 

[Cint]

I'm curious if you know if high Folate is related to seizure meds somehow??

They used to think that AEDs had too high Folic Acid concentration in them, but now that has been cleared. Here it is:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320966/

Folic Acid and Epilepsy by Martha J. Morrell, M.D.

Abstract

Folic acid has been a topic of discussion within the epilepsy community for several decades. Folic acid was initially suspected to be epileptogenic 1, but that concern has been resolved, as research has demonstrated that folic acid in less than supraphysiologic concentrations does not promote seizures. Epileptologists are now concerned that folic acid may be too low in persons with epilepsy taking some antiepileptic drugs (AEDs). Low serum and red blood cell levels of folic acid in women of childbearing potential increase the risk of fetal birth defects. For men and women, low levels of folic acid are associated with elevated homocysteine and an increased risk for cardiovascular disease. A convincing argument now develops that routine folic acid supplementation is important for women and men receiving AEDs.

 

[lindsayschu2]

Thanks Kirsten, I've been seeing doctors for this--the GP I saw prescribed a steroid for this which further reduces potassium and causes dehydration and immune supression, all of which are already a major problem for someone who has had diarrhea and fevers for two weeks. If I didn't know the symptoms of low potassium I might not have gone to the ER Friday--the ER doctor made it clear he thought the decision to put me on Prednisone was a bad one and told me to discontinue it immediately (which I already had that day because I had looked it up myself). I'm just saying, I don't have complete trust in my GP because I have only one good one in the practice and he is so good he only works two days a week because he is involved in research projects with the hospital and is never available. Not all doctors are good. Ill be seeing my neurologist in a few days and as far as the gastro thing is concerned, I'm on the mend and have to do a bacterial retest for one thing in two weeks. But I personally dont think fully trusting doctors knowledge always pays off.