Holistic options? PTSD Epilepsy

[dori22]

I have epilepsy and Post Traumatic Stress Disorder. The one greatly effects the other. The medications I was on, zarontin, lamictal, tazadone, exacerbated my PTSD. I felt my quality of life was diminished enough that the risk of stopping medications outweighed their benefit. My seizures may have been better controlled, I'm not sure, it felt like the effects of the depression, stress and anxiety mainly, caused more seizures.

When I told my Neurologist that I couldn't take the medications any longer he told me that due to my age, and the possibility that I could one day bear children, allergies, and what have you, the medications I was on were the only ones suitable for me. I had already been on a number of other medications and their side effects were equally rough.

I went off the medications against his advice but to me, there really wasn't another option. I couldn't function on the medication and I hardly left the house, mildy agoraphobic, with increased anxiety, insomnia, night terrors, I felt suicidal, a shell of myself and the depression medication I was taking to cope with the side effects did little to help.

I changed my diet to vegan paleo for 7 months, and was seizure free, minus the small partials during my cycle, hormonal changes, the longest Ive ever gone without a seizure. I went to Israel on vacation and 10 days in had coffee and a pastry, really stupid, not to mention the cigarettes I had been smoking socially. I had collapsed at Yad Vashem (holocaust museum) the day before as it was a very intense experience and the combination of the stress and change in diet lead me to have a seizure the following day.

I was started on keppra, it made me extremely angry and started effecting my relationships. Ive never been an angry person so it was quite a contrast in character. It caused my seizures to greatly increase so they took me off of it and gave me a prescription of ativan to take as needed.

When I moved back to the midwest last year my girlfriend called the paramedics while i was unconscious. When they arrived on scene i was conscious but confused and exhausted. My girlfriend informed the paramedics I was having a seizure but somehow they thought I was drunk instead, I had been slurring my speech from the seizure. They were rude to me, brought me to the drunk tank of the hospital instead of the ER and so my girlfriend couldn't find me and i wasn't being treated. I don't know how long i had been convulsing before I became lucid enough to tell someone. The doctors kind of freaked out, apparently the paramedic told them I was drunk. I was eventually treated but it was a difficult experience and they are still trying to charge me for the ambulance.

Ive been hesitant since the incident to go to the hospital when i have seizures. I was at the movie theatre the other day when an aura came on. I'm on my cycle so I probably should have been more cautious. I just made it to my friends car in time before i started convulsing. I took an ativan and asked her to drive me home. When I was home I slept for hours. When I woke up I felt intensely afraid, post ictal depression, cried for what seemed like hours. Its been four days and I still feel exhausted. I had been having panic attacks the weeks before and it had been a while since I had had one. I'm hoping if I can get my PTSD under control it will reduce the frequency of my seizures because I felt anxiety just before the aura came on and I think it is most greatly contributing to them. I had run out of my citralopram prescription for the anxiety and am starting it again.

Is it normal to be this exhausted still? Its been four days. I just can't seem to get enough sleep and always feel like my eyes are going to close whatever i'm doing.

Has anyone else experienced success treating their seizures holistically or have advice about medications? I started paleo again as I had been off during the holidays. I just don't think I can go back on the medications, I couldn't even get out of bed on them, but the most recent seizure was very scary. Ive made an appointment to follow up with my old neurologist but in the mean time, it would be nice to know of any options.

 

[lindsayschu2]

I understand that side effects can be very difficult to deal with, I think most of us can, but of course I can't say for anyone else if they are bearable or not. But leaving epilepsy untreated is really not a good idea. I don't know what dosages you have been on, but have you been on lower doses of meds? It doesn't sound like you have been on that many meds--there are a lot of options out there, and there can be a lot of trial and error to find the right one that you can tolerate and that works. I can only tell you what I would do--I would go back on meds and try other options. Leaving seizures untreated can cause them to escalate.

 

[qtowngirl]

I can only tell you what I would do--I would go back on meds and try other options. Leaving seizures untreated can cause them to escalate.

:agree:

 

[masterjen]

What sort of testing have you had done so far? Has a seizure focus been identified, or any other reason for the seizures? I agree with lindsay and qtowngirl that you should not give up treating confirmed epileptic seizures. Finding the right medication is a lot of trial and error. Has your neurologist discussed surgical treatment at this stage, or VNS/RNS? Also, make sure to see an epileptologist, not just a general neurologist.

 

[mary1]

Dori22d: I stopped my meds about 6 or 7 years ago against the advice of my epileptologist. I have complex partial seizures and have never had a major seizure. I took about 6 different medications over 40 years and never went for longer than 3 months without a seizure and had many side effects. My epileptologist told me they would get worse and my memory would get worse. I told him there are many in my building who can't remember and they don't have epilepsy (I live in a senior building). I get seizures every 2 or 3 weeks unless I'm really stressed out. I would rather deal with seizures and take the bus, than medication. I realize many people with epilepsy don't feel that way, and they may be right. To each his own. I just recently read a book called "Grain Brain" by Dr. Perlmutter and he advocates staying away from Glutten, Grains and Sugar if you have Epilepsy. I've been trying to do that and I'm hoping for the best. I truly believe that the food we consume is a factor. Good Luck!
Epilepsy

 

[epileric]

Grain Brain was a big seller but many doctors & biologists didn't like it because it contradicts what has been scientifically/biologically known.

Wheat Belly and Grain Brain take a backdoor approach to the Atkins low-carbohydrate method. As the titles of these books suggest, wheat causes a big belly and grains damage the brain. Within their pages you learn that all starchy foods, including rice, corn, and potatoes—the traditional foods consumed by billions of people throughout human history—are now unhealthy and must be minimized or, better yet, avoided altogether. If you believe these authors, then what is left to eat in order to meet your energy requirements? Meat, dairy, fish, and eggs (the original Atkins Diet).*

In order for the authors of these two books to pull off the monumental task of luring otherwise intelligent people into inherently dangerous diet plans, they have had to (1) ignore the bulk of the science, (2) exaggerate the truth, and (3) make false associations.

Ignoring the Science: Low-Carbohydrate Diets Contribute to a Higher Risk of Death and Disease

Low-carbohydrate diets can cause weight loss, but weight loss should not be the primary goal of individuals, medical doctors, dietitians, insurance companies, or governments. The goal is to live longer and stay healthy. Three major scientific reviews show that low-carbohydrate diets increase the risk of sickness and death.

The Smoke and Mirrors behind Wheat Belly and Grain Brain

 

[Cint]

I would rather deal with seizures and take the bus, than medication. I realize many people with epilepsy don't feel that way, and they may be right. To each his own.

Really? Have you actually had a bad seizure while taking the bus? It could happen and like Lindsay said going off meds and leaving them untreated isn't a good idea. The seizures could increase, causing you to go status.

I just recently read a book called "Grain Brain" by Dr. Perlmutter and he advocates staying away from Glutten, Grains and Sugar if you have Epilepsy. I've been trying to do that and I'm hoping for the best. I truly believe that the food we consume is a factor. Good Luck!

I also believe we are what we consume, including medication for seizures. Yes, it is a good idea to watch our sugar intake and monitor our gluten because doing so can shield us from diabetes/diabetic seizures/hypoglycemia.

 

[petero]

When I moved back to the midwest last year my girlfriend called the paramedics while i was unconscious. When they arrived on scene i was conscious but confused and exhausted. My girlfriend informed the paramedics I was having a seizure but somehow they thought I was drunk instead, I had been slurring my speech from the seizure. They were rude to me, brought me to the drunk tank of the hospital instead of the ER and so my girlfriend couldn't find me and i wasn't being treated. I don't know how long i had been convulsing before I became lucid enough to tell someone. The doctors kind of freaked out, apparently the paramedic told them I was drunk. I was eventually treated but it was a difficult experience and they are still trying to charge me for the ambulance.

change "girlfriend" to "mother" and I'm just now beginning to surmise that's exactly what happened to me almost three years ago, and I'm still not healthy regarding that span. I think I experienced a new type of seizure also, spurred on by the trauma of it all. seriously PTSD.
I never want to be involved with the healthcare system at ALL when I'm ictal based on that experience.
I was on generic keppra too incidentally.
I suspected it was that which gave me a new type of seizure to begin with.
I have no idea.
I'm still trying to figure it out in my head

blessings -