Newbie Introduction

[Zoofemme]

Hello all,

I thought I would introduce myself. I keep trying to think of a way to keep this short but not sure if I can...if it starts to get off course please bear with me, I tend to do that at times, lol. It will show just how differently E can present itself.

I'm 45 yrs old and have been having tonic clonic seizures for the past 11 years. We have always been under the impression that mine were generalized in nature but my new neurologist thinks they may start as complex partial and become generalized...I just had a new EEG and MRI done and will find out more at the end of this month. I guess she comes to that conclusion because the meds I respond to the best are those for complex partial E. I never actually realized this...I guess I was just so weary by the time we finally found something that worked that I didn't think to ask.

My first seizure occurred when I was at home,alone, sitting on the computer. One minute I was reading my e-mail, the next thing I knew I was laying on the floor and felt as though I had been run over by a train. I couldn't get my head or my hands to stop shaking/ trembling. Something definitely wasn't right so I called someone to take me to the hospital. I had been quite ill about a month before that and hoped I wasn't having a relapse. By the time we got thru the ER process and they had checked me out everything had calmed down but for a mild hand tremor. They got me a consult with a neurologist...some of the tests they ran were indicators for MS and they thought it best to follow up on those. OK, not a problem. The next seizure happened at work...ambulance, ER again, only this time they said panic attack, that one ticked me off because I had been putting parts up...let me tell you, there is absolutely nothing to get excited about when putting auto parts on a shelf, particularly brake pads . At any rate, I finally saw a neurologist and things just went kind of downhill from there for awhile.

Initial diagnosis was possible MS. EEG, MRI, EMG, Sleep Study. I was exhibiting distonic episodes (my fingers, hands and toes would painfuly curl and twist) as well as having convulsions. The neurologist wasn't convinced of the convulsions but had seen the dystonia. Meds were atavan and SSRI's at this point I think. One night I had a seizure talking to my husband on the phone. He hung up on me. I called my mother but when I tried to talk nothig came out but gibberish. SHe thought I had a stroke and called the EMT's. I freaked out when they showed up, my husband showed up right after they did so he took me to the ER...from that point on I stuttered, badly for the next 4 years. With the stutter the neurologist through the MS diagnosis out the window and said it was anxiety and all in my head (except the dystonia). He would not treat my seizures, sent me to a psychiatrist instead. By this time I was on Serotonin and an anti-anxiety med (can't remember which off the top of my head).

Psychiatrist was a great guy...first words out of my mouth he said you dont have a psychiatric problem, you have a neurological problem. Now I did suffer from depression because I wasn't dealing well with having my life turned upside down but we worked through that. I had a seizure in his office and he went ballistic and called the neurologist ...needless to say everyone in the office got a good idea of what he thought of the neurologist that day. It was sad though. The psych managed to get me an appointment at Duke University Hospital...unfortunately they talked to my neurologist too, Duke spent all of 10 minutes with me and showed me the door

We finally moved to a different state and I got lucky to find a good neurologist who had been doing the job for a LOOOONNGGG time and wasn't closed minded. He couldn't understand why my other neurologist just dismissed everything so quickly. My MRI had shown a small bright spot, the old neurologist thought it was a goof on the technicians part even though the radiologist report indicated it was scarring...hmmmm. The first thing this newer guy did was order new tests...low and behold, the bright spot was still there and has been on every MRI I have ever had. He took me off all the othe drugs and put me on anti-epileptic drug's...tried Dilantin first, that was SCARY (!) then went with Tegretol. I was on it for a long time, upping the dosage bit by bit until he reached the max and it was too much for me ( I have a LOT of drug allergies, sensitivities and intolerances). He finally got me on Trileptal which got my seizures down to @ once a month then added in lamictal. That was the miracle combo for me. My seizures got farther and farther between and my stutter began to disappear. I haven't stuttered for 4 years and i have gone up to 18 mos without a seizure.

Unfortunately, I have had two breakthrough seizures in the past 4 months and terrible migraine headaches almost daily. I have since moved a few times and have now started seeing a new neurologist who has added topiramate to my cocktail of lamotrigine and oxycarbazipine. She is talking about getting rid of one or both of the others and I dont know if I like that idea. The topiramate already has me stumbling over words which is too reminiscent of stuttering

Again, sorry for being so long...you can call me Beth if you like, of Zoo, I'll answer to either

[Nakamova]

Hey Zoo, welcome to CWE!

You've had quite the ride. I'm sure many CWE members can relate -- the long protracted diagnosis, the lousy neurologist, the medication merry-go-round -- unfortunately these seem to characterize a lot of folks' experience of epilepsy. Feel free to explore the different forums here. There are forums for venting and chatting, and just having fun.

Best,
Nakamova

[RobinN]

Here is an article written by Dogtor J regarding stuttering:

* Stuttering- It is my belief that there is a very good chance that this condition is akin to epilepsy in that the same foods that are providing the neurologically active proteins described in the epilepsy paper (Idiopathic Epilepsy- The Dietary Solution) are the culprits in this frustrating and embarrassing condition. I have now read accounts of stuttering people with celiac disease who were able to completely control this communication affliction with a gluten-free diet. However, there are also reports of celiacs with this that did not respond. My comment to them would be the same as my comments to other celiacs that are not reaching optimal health: "Gluten is only ONE of the culprits in the deterioration of our health. You MUST consider dairy (casein) and soy protein as being capable of doing every bit as much harm as gluten."

The neurologic system is greatly affected by these three foods, with gluten-containing grains and cow milk products being the most damaging. Once again, this is due to the fact that these two food groups have both the depressing substances (casomorphins and gliadorphins) and the neurostimulants (glutamate and aspartate). On top of that, they block the absorption of essential nutrients in the duodenum creating a cascade of negative effects.

Who would be more susceptible to these negative effects than the developing child? Remembering that we are on a spectrum of susceptibility to the effects of these foods, it is easy to see that the worst of the worst will suffer the most serious and most uncommon consequences. If there is a place for genetics in the grand scheme of things, this is where it goes. As I have written before, I look at genetics as the roadmap of where you are headed once you leave the main highway of good health. As long as you are doing everything right, that map remains in your glove box. But once you take a left hand turn off the interstate of wellness and your immune system, for example, starts to falter, then that genetic roadmap is likely to tell you where you are headed in the way of conditions and diseases.

This concept was illustrated so well when I started following leads in the study of stuttering. My intuitive brother put me on this trail. He was reading my work on epilepsy and asked if I thought stuttering might be similar and then proceeded to tell me why he thought so. He was absolutely right, I believe. I accessed one of my celiac searches, put in "stuttering" and the evidence hit me right between the eyes. But again, I found mixed responses to gluten elimination alone just as one would expect from reading my work on epilepsy. In some individuals, the elimination of gluten grains was adequate to completely halt the stuttering, just as the removal of wheat from the diet of some dogs arrested their seizures. But in the worst cases, the removal of all sources of the offending proteins would be required.

I "theorize" that there is a parallel between stuttering and other developmental problems in the neurologic system such as SIDS and learning disabilities. I believe the link is a combination of the depressing protein complexes (casomorphins and gliadorphins) and the malabsorption of essential nutrients by the damaged duodenum which leads to the poor development of these brain centers. Of course, the duodenal damage is being done by the same foods that are providing the neurologically active proteins. The depression associated with these proteins was simply meant to be the warning sign to lay off these foods. But once the vitamins and minerals that are essential for proper brain development are depleted, the cascade of problems begin and the depression caused by the casomorphins and gliadorphins becomes quite profound (as in the case of autism).

As in the case of epilepsy, once the neurons of the brain become chronically depressed, they then upload (become more sensitive) in an attempt to overcome the depression. Once again, this is the origin of narcotic addiction. The brain gets accustomed to the effects of the narcotics and makes an adjustment that then becomes a way of life for these neurons. When the narcotic is withdrawn, the brain calls out for more to keep the situation in balance. While uploaded, the neurons tend to overreact to the neurostimulants (glutamate and asparate) in the same foods. So, the person who stutters may be in an interesting physiological dilemma. They have a depressed, poorly developed speech center that overreacts to the stimulants in the same foods that have been causing the original damage. So when the glutamate and aspartate hit that individual's brain, the over-stimulation of the impaired neurons of the speech center produces a repetitive action that manifests as stuttering. Their depressed brain will not let intended the words out despite the fact (and even because of the fact) that the neurostimulants are beating at the door. By removing the sources of the depressants and the stimulants, the situation resolves. Also by doing so, the proper absorption of essential supportive nutrients for the brain can occur again. The process is reversed, just as it is documented in the celiac literature.

In those that are afflicted, there are very specific areas of the brain that can be affected, such as the respiratory center (as in SIDS) or the speech centers (as in stuttering) or in centers of cognition (as in specific learning disabilities). Why one condition develops rather than another is a great question. The way I see it, there are three possible explanations for this: genetics, multiple mechanisms, and "the other explanation". What is "the other explanation"? It is the one we really have no clue about, similar to the answer to "Why does MS usually strike one side of the body or the other but not both sides simultaneously?"

Trigeminal neuropathy, Bells palsy (facial nerve), optic neuritis, peripheral neuropathies of the limbs, and other manifestations of MS usually occur on one side at a time. If it is an internal, autoimmune problem (like it is) then why aren't the nerves on both sides attacked at the same time??? There is really no logical medical explanation for this. Hmmm... I simply call it grace. If the attack occurred on both sides at the same time, the body's function would be greatly reduced, especially in the case of the blindness caused by optic neuritis. Therefore, we have been spared for some "unknown reason" by having it occur only unilaterally. So, on the issue of why a person suffers from one neurological manifestation versus another, we may discover that genetics do play a big role as a determinant OR we may not. It may just be "the other explanation".

I have strayed a bit from the topic at hand but it was warranted, I think. It was done to illustrate the fact that a multitude of neurological disorders can arise from a common origin. Celiacs are renowned for having one or more of the above conditions. Stuttering has been halted in some celiacs by eliminating gluten. So have many of the other conditions. But, the reader must ALWAYS remember that gluten is only ONE of the big three food components involved in these disorders. Remember too that wheat is only the number two allergen in man and pets while cow milk is number one. Therefore, it would seem logical to eliminate all gluten, casein, and soy in the stuttering patient, as well as the obvious sources of glutamate and aspartate such as MSG and diet drinks.

Recovery from this condition may be rapid and complete. Those who know would certainly say that a dietary trial is well-worth the effort.

www.dogtorj.net

[Zoofemme]

It is interesting you would post an article regarding gluten intolerance Robin. I believe my GP is going to be sending me to a gastro-ent specialist next month because I do have other issues currently going on. Whether they are all connected or not remains to be seen; it would be EASIER for me if they were all connected but my luck doesnt always swing that way I went to the GP a month ago to follow up on some long term muscle cramping and appetite problems and blood tests indicated that my low normal magnesium sunk to BELOW normal. He has me taking magnesium still to see if it will come back up but since that hasn't worked yet it will be off to the specialist

Thank you and Nakamova both for your welcome and replies :-)

[skillefer]

Hi Zoo! Welcome to CWE. you said you've been having migraines? Several of us take Magnesium to help control our seizures. You might find it useful too. the average dose around here is 1000 mg. a day. As for your docs...sounds like you had a bad start...sorry about that. Finding a good neurologist can be sooo hard. But remember to be persistent. And if they won't listen, remember, you pay them...so find someone who will listen if at all possible.

[Nakamova]

Zoo --

There appears to be a very real link between Gluten/GI issues and seizures. Some studies have shown that the two co-exist in up to a quarter of epilepsy cases in children, and the experience of many people here at CWE is that their seizures decline once they switch to a gluten-free diet. Robin is one of our resident experts because of her research and advocacy on behalf of her daughter, so you might want to click on the links below her name to get a sense of what she's learned. Also a number of threads here talk about gluten issues -- you can search using the tab at the top right.

Best,
Nakamova

[RobinN]

If I were to guess, I would say highly likely that these are related.
Doctors like proof, and many of the tests are not 100% conclusive, but if you trust and have faith that there is a connection, over time you might see positive results.

DogtorJ is also a member here, so if you have a specific question that your doctors can't answer, you might send him a private message. He is very supportive.

[becks]

Hi Zoo,

welcome i'm becks from merry old england i have had problems with the doctors before it was a locum who told me just how severe my E was and not my specialist sods law have fun feel free to vent, ask, cry we all here

Love B xx

[jackiepannell]

Sorry to hear that you have had such a hard time. I too have had a hard time finding a doctor that will help me. I really wish you the best. May God bless you and I will lift you up in my prayers.

[becks]

Hi All,
I went to my doctors last month as my constant shakes were getting really bad she tried refering me to my specialist but because i missed one appointment when i was getting married i called the hospital first to tell them i would not be making the appointment they have taken me off there list so if something goes wrong with my epilepsy i have no boby to go and see so much for the NHS i say go private for things like these then you are paying what you get, i know america is trying to get some sort of NHS ( free health service) over there but please stay private for your epilepsy