30+ years with Epilepsy, still lots of ???

Neuro Man

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Glad to meet my peers. I'm 53 now. Diagnosed with Epilepsy when I was 21. Some Neuro docs say it was from a head injury when I was 4...some docs just dont have opinion. I've had uncontrolled complex partials since day one. Meds help but not 100%. I went on disability 4 years ago after going through the process to determine if I was a good candidate for temporal lobe resection surgery. MRI. EEG, Video EEG, Functional MRI, PET Scan, Neuro Psych test. WADA procedure...I had them all just to find out there was too much risk. The crazy thing is my IQ is 143 but my short term memory is at "extreme deficit". They say my brain "re-organized" when I was still young to the point I have cross hemisphere thought process. 100% ambidextrous too. However, every seizure I have continues to damage my abilities.

I live in Montana where docs are hard to come by and there is no such thing as an unscheduled office visit unless you wait 2 months and drive a hundred miles. After being on AEDs for 30+ years I'm realizing the long term sideaffects. AEDs have a long term risk of screwing up lots of bodily functions we take for granted such as digesting food properly. Oh, and your vision. Each person seems to react differently so one person's experience with a specific med is different than others. After being on maybe a dozen different AED meds, my neuro doc has done his best and we settled on Trileptal and Zonisamide.

I fear that my blood levels are way off currently because my stomache isnt emptying and I'm experiencing back and forth constipation/diarrhea. In addition, the stomachs is causing loads of acid reflux which has burnt a hole in my esophagus. Even with trips to hospital and endoscope, no med professional has checked my levels in a year.

I moved to Montana 15 years ago. I get to drive in montana which is soooooo cool! However, I keep running into the fact that montana might as well be a third world country when it comes to medical.
 

Music36

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Welcome to CWE Neuro Man. Your story sounds similar to mine. I’m 51, had complex partials since early childhood but didn’t get diagnosed with epilepsy until I had a tonic clonic at age 21. My seizures were misdiagnosed as anxiety attacks when I was a kid and teenager. I knew they weren’t anxiety attacks, but I didn’t know what they were. I was greatly relieved to finally know what was wrong with me when I was correctly diagnosed

Memory problems started in my early forties from all the seizures I had over the years. This motivated me to have surgery. I had laser ablation surgery in 2015 which was successful. My left Hippocampus and Amygdala were removed. I just get occasional auras/simple partials nowadays. Going through the surgery was very difficult, but it was worth it.

I have been on a number of seizure meds over the years and dealt with many bad side effects. I was on Tegretol for 30 years and then went off it when I was diagnosed with Osteopenia. Tegretol can do bone damage. Now, I just take Keppra.

I have stomach issues, as well. I have irritable bowel syndrome and hiatal hernia. I have eliminated many foods from my diet which has greatly helped. For example, I am gluten-free and dairy-free. I don’t eat or drink anything with citric acid, no onions, no garlic, no red meat, no high fructose corn syrup, no soy, no soda, and the list goes on. My stomach feels so much better. I also have Sjogren’s Syndrome and Fibromyalgia, so I’ve eliminated foods that cause or worsen inflammation (for example, legume family and red meat). The one thing I can not give up is chocolate, but I have greatly reduced my intake. I used to have severe heart burn and acid reflux and my stomach was in so much pain. It’s like magic: I changed my diet and I no longer suffer. I know it’s easier said than done, but I was so sick all the time I was starting to hate food.
 

Neuro Man

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Welcome to CWE Neuro Man. Your story sounds similar to mine. I’m 51, had complex partials since early childhood but didn’t get diagnosed with epilepsy until I had a tonic clonic at age 21. My seizures were misdiagnosed as anxiety attacks when I was a kid and teenager. I knew they weren’t anxiety attacks, but I didn’t know what they were. I was greatly relieved to finally know what was wrong with me when I was correctly diagnosed

Memory problems started in my early forties from all the seizures I had over the years. This motivated me to have surgery. I had laser ablation surgery in 2015 which was successful. My left Hippocampus and Amygdala were removed. I just get occasional auras/simple partials nowadays. Going through the surgery was very difficult, but it was worth it.

I have been on a number of seizure meds over the years and dealt with many bad side effects. I was on Tegretol for 30 years and then went off it when I was diagnosed with Osteopenia. Tegretol can do bone damage. Now, I just take Keppra.

I have stomach issues, as well. I have irritable bowel syndrome and hiatal hernia. I have eliminated many foods from my diet which has greatly helped. For example, I am gluten-free and dairy-free. I don’t eat or drink anything with citric acid, no onions, no garlic, no red meat, no high fructose corn syrup, no soy, no soda, and the list goes on. My stomach feels so much better. I also have Sjogren’s Syndrome and Fibromyalgia, so I’ve eliminated foods that cause or worsen inflammation (for example, legume family and red meat). The one thing I can not give up is chocolate, but I have greatly reduced my intake. I used to have severe heart burn and acid reflux and my stomach was in so much pain. It’s like magic: I changed my diet and I no longer suffer. I know it’s easier said than done, but I was so sick all the time I was starting to hate food.
 

Neuro Man

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It's sad that other people know my tribulations but comforting to realize my experiences arent completely foreign to others. Sounds like you've been around the block too. Glad your surgery was so successful. I was so looking forward to surgery and so were all the surgeons until the FMRI and neuropsychological test. The WADA test completely ruled out the chance for successful surgery. It was one of the biggest let downs of my life. Your right, all the tests and driving/flying back and forth would have been worth it.

Funny how people have different experiences with meds. I tried Keppra for 2 doses until I was completely blind. I mean total dark! Like you I was on Tegretol for many years too until it just quit working for me. Tegretol has many long term sideaffects including memory and I've seen information that supports your assertion of bone loss.

My left hippacampus is damaged too. Not sure if it's from seizures or AEDs. Maybe both. In the last few years my seizes have intensified and last longer.

The biggest thing I've learned throughout all these years is that I need to live every day. I dont hold back even though I have a lifelong sidekick. Keeping myself occupied, not stressed, keeps me less likely to have seizures. I even have my own gold claim that I enjoy working my butt off. Unfortunately it means being by myself alot and that's probably not a good idea.
 

Music36

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One of the great things about support groups is you won’t feel alone anymore in what what you go through. Even if you have family and friends that are supportive, they have no idea what it’s like to live with seizures. I’m sorry you weren’t a candidate for surgery. I know I was lucky to be a candidate and for the surgery to be successful. But, it was a very traumatic experience going through the surgery and recovery. It was not easy. It was a very long and difficult recovery. But, like I said it was worth it and I don’t regret having it. Although, the first couple of months I was regretting having the surgery. In addition to the severe pain from the surgery which lasted about a month, the surgery changed my personality temporarily. My emotions were greatly intensified. I was having severe anxiety and crying for hours for no reason. Before surgery, I was the type of person that very rarely cried. I was tough. The surgery stripped my defense mechanism and I became so vulnerable, emotionally. I was a basket case for months. My mood swings became much more severe, as well. It made me realize I had been living in denial for many years. I came to realize I have bipolar disorder and anxiety disorder. Epilepsy surgery can make these things worse if you have them. As my brain healed, the emotions became less intense and severe, but I will never be the same person I was before surgery. In some ways, that’s a good thing. I used to have so much anger and rage before the surgery, but not anymore. Some of it is physiological and some psychological. I should have went to a psychiatrist and therapist immediately after surgery, but I did‘t. I finally started to see a psychiatrist and therapist 2 1/2 years after the surgery and am doing much better. I am managing the bipolar and anxiety. I have reached full acceptance of all my health issues (physical and mental) and am proactive in self-care. I now feel empowered. A couple of years ago I felt very weak physically and emotionally. I also suffer from chronic pain, but have learned to manage and decrease the pain. I have Sjogren’s Syndrome, Fibromyalgia, and chronic back pain.

I did not let epilepsy stop me from living a pretty normal life. I went through undergrad and grad school as a single-mother. When I was in grad school, the stress and lack of sleep caused me to have seizures more days than not but I still graduated with a 3.5 GPA. Determination! I didn’t realize at the time that having all those seizures was doing brain damage. Surgery, of course, made my memory issues worse.
 

Music36

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You’re correct in that it’s not good to be alone too much. But, it’s good to keep yourself busy with work, exercise, and hobbies.
 

Nakamova

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Hi Neuro Man, welcome to CWE! make yourself at home. :)

My seizures (tonic-clonics) started at age 35 for no obvious reason. As with your case, the doctors suspected that a much earlier head injury (at age 5) might be the cause, but at this point (I'm 55) it doesn't really seem to matter. I'm fortunate that my seizures have been controlled by meds (Lamotrigine) for some time, with minimal side effects.

I fear that my blood levels are way off currently because my stomache isnt emptying and I'm experiencing back and forth constipation/diarrhea. In addition, the stomachs is causing loads of acid reflux which has burnt a hole in my esophagus. Even with trips to hospital and endoscope, no med professional has checked my levels in a year.
At one point I tried Zonisamide and it gave me a very acid stomach -- any chance it might be a contributing factor? I know Zonisamide works for some folks, but for me it caused problematic side effects related to decreased appetite/low blood sugar/acid stomach, and I ended up switching to the Lamotrigine.
 

Neuro Man

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Idk Nakamova... maybe. Still in the investigative stage as to what is causing it. I tried to get into my neurologist but closest date he can see me is March 31. I might have to go to urgent care to get my blood levels. Living in such a large rural state means you have to be your own doctor sometimes. All I know is I've never experienced acid reflux anywhere remotely like this. I've read that some AEDs coat and relax the vagus nerve, especially Trileptal which I take a near hospital level dose every day. The vagus nerve helps control your stomache.

I've taken lamotrigen too. It just wasn't very effective for me. One of my earlier Neuro docs told me something that stayed with me through the years. He told me "finding the right med is like a fishing expedition, you have to be willing to try a few lures before you get what the fish wants."

Glad your seizures are under control. You are so very fortunate!
 

Porkette

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Hi Neuro Man,

Welcome to CWE! Just like you I have had absence and complex partial seizure for 48 yrs. I started having absence seizures when I was 10 yrs. old and then 2 yrs. later the complex partial seizures started. I had a right temporal lobectomy done back in 1993 and they removed 75% of my right temporal lobe and all of my right hippocampus to help reduce my seizures 50-60% before surgery I would have about 300 seizures a yr.
but after surgery my seizures decreased to about 114 at the most.

Just like you I had stomach problems and I saw a gastro specialist who put me on a low fat diet and he did some test on me to find out that from all the yrs. of taking mysoline (Primidone) the drug at up the lining of my intestines. This may sound crazy but try taking 2 Tablespoon of apple cider vinegar with mother in it and it will not only help your stomach but in some cases it can reduce seizures. I started using it to lose weight
and then I noticed I was having fewer seizures. I later saw a video on you tube where it stopped a girls seizures completely. So if you want to
give it a try.

I was told that my surgery was going to be to risky but I got a 2nd opinion and I went to an Epilepsy Center and dealt with an Epileptologist and he and the neurosurgeon along with the neuropsych did all the testing on me just like you had and they approved of the surgery. So you may want to look into a 2nd opinion.
The Dr. also did a DNA test on me and found out I was drug resistant to all seizure meds out on the market now so they told me to start using cbd (med. marijauna) and I was surprised at how that also reduced my seizures.

If you want to ask your Dr. to do a DNA test all they do is draw some blood and get some salvia from your mouth and that is sent to the lab where they can see the amount of enzymes in the liver along with a persons body chemistry and the Dr. will match that up to the best seizure med for a person with the least side effects or the test will show if a person is drug reistant.

I also found I have what is called seasonal seizures which means at certain times of the yr. a person may have more seizures than usual I have more seizures in the fall and winter because there's less serotonin so sitting around bright lights helps me a little. If you haven't been keeping track of your seizures get a calendar and write down what time of day/night you have any seizures and the time the seizure happened. By doing this the neuro can sometimes see a pattern in a persons seizures. I wish you only the best and May God Bless You!

Sue
 

Neuro Man

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Sue, thanks for your reply with excellent info. Actually, I'm the one who put the final NO on the surgery. The epilepsy center at university of utah is very reputable. Even though they believed I wasn't a strong candidate, they offered the surgery anyway because in their opinion it would decrease my seizures by 50%. The sticking point with me was they said my personality would change for sure and the remaining seizures would not allow me to drive. In addition, they didnt know what would happen to my speech since my speech center is divided between hemispheres. Plus I'd still be taking same amount of meds. The possible positives didnt outweigh the negatives. Its something that I may look at again as technology and knowledge increases.

Ya, I've done the seizure tracker thing. Before surgery candidacy I was very religious about it. All I could ever determine was stress was the major cause but lack of sleep was also a part. I've done my best to take stress out but sometimes it creeps back in...lol.

At this point, I'm trying to determine the cause of this sudden stomache problem. It might not have anything to do with epilepsy. Maybe just getting old. However, there seems to be plenty of epileptic people with same problems. Your suggestions of diet change are very well taken. In fact, I've already made some changes. Thanks Sue
 

Neuro Man

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One of the great things about support groups is you won’t feel alone anymore in what what you go through. Even if you have family and friends that are supportive, they have no idea what it’s like to live with seizures. I’m sorry you weren’t a candidate for surgery. I know I was lucky to be a candidate and for the surgery to be successful. But, it was a very traumatic experience going through the surgery and recovery. It was not easy. It was a very long and difficult recovery. But, like I said it was worth it and I don’t regret having it. Although, the first couple of months I was regretting having the surgery. In addition to the severe pain from the surgery which lasted about a month, the surgery changed my personality temporarily. My emotions were greatly intensified. I was having severe anxiety and crying for hours for no reason. Before surgery, I was the type of person that very rarely cried. I was tough. The surgery stripped my defense mechanism and I became so vulnerable, emotionally. I was a basket case for months. My mood swings became much more severe, as well. It made me realize I had been living in denial for many years. I came to realize I have bipolar disorder and anxiety disorder. Epilepsy surgery can make these things worse if you have them. As my brain healed, the emotions became less intense and severe, but I will never be the same person I was before surgery. In some ways, that’s a good thing. I used to have so much anger and rage before the surgery, but not anymore. Some of it is physiological and some psychological. I should have went to a psychiatrist and therapist immediately after surgery, but I did‘t. I finally started to see a psychiatrist and therapist 2 1/2 years after the surgery and am doing much better. I am managing the bipolar and anxiety. I have reached full acceptance of all my health issues (physical and mental) and am proactive in self-care. I now feel empowered. A couple of years ago I felt very weak physically and emotionally. I also suffer from chronic pain, but have learned to manage and decrease the pain. I have Sjogren’s Syndrome, Fibromyalgia, and chronic back pain.

I did not let epilepsy stop me from living a pretty normal life. I went through undergrad and grad school as a single-mother. When I was in grad school, the stress and lack of sleep caused me to have seizures more days than not but I still graduated with a 3.5 GPA. Determination! I didn’t realize at the time that having all those seizures was doing brain damage. Surgery, of course, made my memory issues worse.
Music36, ya I've lived my life as full as I can too. I've been very successful in business and sold my ownership about 15 years ago. Like you, I went back to school. I'm still not sure why other than maybe to finish what I started way back when I really was college aged. Or maybe to make my work history match more consistently with my education. Over the last 15 years I've had jobs but they dont last long. The short term memory really puts a kibosh on jobs and when the employer finds out about the big E, they freak out. For the last 10 years I've become more involved with gold prospecting to the point it's no longer a hobby. I have 3 gold claims in Montana and 1 in Arizona. Even though there's a chance of getting hurt by myself; 2 knee surgeries, shoulder surgery, broken arm, I enjoy the outdoors and I get to drive a 4wheeler off road where I'm not hassled by any DMV. Plus, the GOLD is mesmerizing! It might be a worse disease than epilepsy.
 

Porkette

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Hi Neuro Man,

I was also told that my personality may change and it did for the better I have more of a happy and humorous personality compared to before surgery where I was more moody. Also just like you my speech was split down both sides of my brain instead of being on the left side only and my surgeon told me that was a benefit because if one area was damaged I had the other side to fall back on for speech. Have you looked into gamma knife surgery? That's a lot safer and often it's same day surgery all the surgeon does is use high frequency radio waves to wipe out the damaged area if the brain that's triggering seizures. Often you can go home the same day it depends on how much radiation a person gets. I wish you only the best and May God Bless You!

Sue
 

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At this point, I'm trying to determine the cause of this sudden stomache problem. It might not have anything to do with epilepsy. Maybe just getting old. However, there seems to be plenty of epileptic people with same problems. Your suggestions of diet change are very well taken. In fact, I've already made some changes. Thanks Sue
I hope you are able to get your med levels tested when you next see your doc (for instance, Trileptal can reduce the blood levels of Zonisamide), and perhaps also your serum bicarb and blood ph levels should be tested as well (recommended with Zonisamide). but I agree with Sue -- in the meantime dietary changes may help. Unfortunately, this can often be a process of trial and error, testing to see what helps and what makes things worse. My cousin suffered from constipation, diarrhea and acid reflex, and was told to avoid fats. But when she tried full-fat yogurt, her symptoms decreased dramatically. Go figure! Yogurt can help with acid stomach, as can bananas, ginger, etc. but it's also the case that problems with reflux can be caused by the constipation backing up the acid into the stomach, rather than the stomach being too acid. In this scenario, low acid foods or neutralizing foods can provide relief, but don't target the primary cause. Medicines for acid reflux can actually make constipation worse.

I hope you can get some answers -- and relief -- soon.
 

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Hello, & welcome to the group. I've had epilepsy since childhood, but it wasn't diagnosed until I was 14. I always complained of "weird feelings" in my head, which were diagnosed as simple partial seizures after one occurred during an EEG. I had some tonic clonic seizures when I was 14--none since. I began having complex partials a little over 20 years ago. Those are sometimes very dangerous for me. I have tried every AED out there. I'm taking 400mg/day each of Topiramate & Zonisamide, but still average 1-3 breakthrough complex partials/month.
 

Neuro Man

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Hi Sabbo, sounds familiar. I average 1 to 3 per month too. I happen to be in a dry spell right now though. That's not unusual either. I dont know about you but the after effects from the actual seizure is much worse than the actual seizure. Usually takes a couple days to completely recuperate. We arent alone.
 

Porkette

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Hi Neuro Man,

If you get any warning that you are going to have a seizure tighten up all the muscles in your body and make your hands
into tight fists if you do this quick enough it can sometimes stop the seizure. My neuro taught me this back in the 1970's
and it has stopped many complex partial and absence seizures. I wish you only the best and May God Bless You!

Sue
 

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I really wish I'd have some warning before the complex partials. I had one yesterday morning after taking a shower. I didn't even realize it until almost an hour later, when I went to get something & noticed that the shower liner was ripped out. I've hurt myself a few times when complex partials occurred during or after showering. This time I didn't. The after effects of the seizures I have don't last long--unless I injure myself. I have burned myself severely (second & third degree) many times.
 

Neuro Man

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I'm with you Sabbo. I get an aura before but it's not enough time to think too much. I've hurt myself many times. Im by myself out in the mountains alot and have picked myself off the ground many times without realizing I fell. Most of the time I have enough time to stop and sit down but not always. My seizes only last about a minute sometimes less but alot of stuff can happen during that time. 3 weeks ago I fell down on top of a 5 gal bucket and bruised my ribs pretty bad. Still dealing with that.
 

Porkette

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Hi Folks,

Hot water can be trigger for some people because the hot water is hitting your head and in turn firing up the neurons in the brain which
can sometimes trigger seizures. I had this problem and my Epileptologist told me this he then told me to lower the temp of the water and since
I've done that I haven't had as many seizures in the shower. I wish you the best of luck and May God Bless You!

Sue
 

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The strange thing is that I don't shower in extremely hot water--especially since the first I burned myself. With second & third degree burns all over, how can you use hot water to shower? Most of the right side of my body is covered in scars from burns.
 
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