update.. got my latest EEG results back

[taniaaust1]

This was my third EEG Ive had in past 5 years and once again it isnt showing up epilespy but rather just a faster brain wave then normal which doctors once again put down to it possibly may be due to some drug Im on which isnt correct. ( wasnt on any drugs with the first two scans which showed that finding and I did stop all my drugs eg melatonin and supplements this time for several days before the scan so they cant blame the melatonin or vitamins or minerals..

It sucks cause its only a matter of time before I have another seizure and Im still without any diagnoses for the seizures and hence not on any meds for them either. Im concerned as the last one 6-8weeks back was one of the worst I had and living alone.. well it just bothers me.

I keep wondering if the seizure incidents I get are being caused by my POTS (which I still havent found a doctor for so untreated)... maybe lack of blood flow to my head causes seizure?? My friend who once saw me have a seizure said my face went real pale when I had it, so lack of blood flow to head .. being caused by the POTS, that would make sense. (with epileptic seizures I dont think people go pale do they??? thou if one collapses due to a heart issue, paleness then can occur then too.. doctors dont think the minor leaky heart valves Ive developed in past few years would cause me issues).

 

[Valentijn]

Hi Tania.

I think glutamate may be the culprit. Taking supplements to lower it has reduced my OI symptoms considerably (almost completely, when not having PEM). Glutamate is also often involved in seizures in general. If you're having OI symptoms with your seizures (getting all pale and such), I think the odds are pretty good that glutamate is involved.

High glutamate levels are a likely side effect of our inability to form glutathione properly. One component of glutathione, cysteine, isn't formed as efficiently as it should be, but the other two components, glutamate and glycine, do just fine. However they aren't able to form glutathione without enough cysteine present, so they might be building up in the body a lot more than they should.

Glutamate and glycine are both neurotransmitters, and especially in the case of glutamate, too much of them can cause a lot of problems. Supplements or drugs to lower/counter/block glutamate may therefore be helpful, as might avoiding free glutamates in your diet, such as monosodium glutamate/MSG.

 

[taniaaust1]

Interesting post. Thank you

 

[xchocoholic]

Hi tania,

Sorry to hear you have seizures too. I had my first and last, kow, 2 hour tonic clonic, in march. Mine happened at my doctors office and I was taken via ambulance to the er.

ETA .. Forgot to say that I have a life long history of petite mals. My family just thought I was spacey sometimes ... lol ... These got worse when I came down with ME/CFS tho. To the point where many times, I'd get totally confused and have to sit or lay down till it was over. I only remember these occuring if I was overextending myself physically. I suspect an OI / glucose connection but haven't figured it out yet. Caffeine was a big no no though ... ; ) Caffeine can cause hyperinsulinemia.


I'm fairly certain my 2 hour seizure was brought on by a combo of gluten and caffeine. I already knew that gluten, which has glutamates, caused me to have nocturnal myoclonus and other neuro symptoms. I just got carried away with eating some gf processed foods. DUH ... I knew they have gluten but just got stupid ... lol ...

I didn't know about the caffeine seizure conndetion at the time. But I knew it made me feel super energized and jittery.

I declined an eeg because I'd just had that seizure and wasn.t about to chance having another one. I was told that there was a chance that an eeg wouldn't be accurate if I was on meds or wasn.t sleep deprived. My doc wanted me to stay awake all night the night before .. Um no thanks ...

Dogtorj has been researching The glutamate connection to seizures. His info is on the web. Basically, as far as I can remember, he says to avoid gluten, dairy, corn, soy and nuts ..

Hi Tania.

I think glutamate may be the culprit. Taking supplements to lower it has reduced my OI symptoms considerably (almost completely, when not having PEM). Glutamate is also often involved in seizures in general. If you're having OI symptoms with your seizures (getting all pale and such), I think the odds are pretty good that glutamate is involved.

High glutamate levels are a likely side effect of our inability to form glutathione properly. One component of glutathione, cysteine, isn't formed as efficiently as it should be, but the other two components, glutamate and glycine, do just fine. However they aren't able to form glutathione without enough cysteine present, so they might be building up in the body a lot more than they should.

Glutamate and glycine are both neurotransmitters, and especially in the case of glutamate, too much of them can cause a lot of problems. Supplements or drugs to lower/counter/block glutamate may therefore be helpful, as might avoiding free glutamates in your diet, such as monosodium glutamate/MSG.

Hi val,

Can you tell me what you're taking ? I take theanine at night if I have myoclonus, jerking, but i'm very interested in what may help with oi. Thanks .. X

 

[LaurelW]

I was talking to Dr. Bateman the other day, and she said that seizures can be O.I. related.

 

[Valentijn]

Hi val,

Can you tell me what you're taking ? I take theanine at night if I have myoclonus, jerking, but i'm very interested in what may help with oi. Thanks .. X

I take TheaNAQ (6 per day), which contain NAC, Q10, and L-theanine. I also take 1 TravaCor per day, which includes 5-HTP, Taurine, and more L-theanine. I'm not sure which component specifically is helping so much with my OI/NMH. I think one has some ALA in it too.

 

[xchocoholic]

I take TheaNAQ (6 per day), which contain NAC, Q10, and L-theanine. I also take 1 TravaCor per day, which includes 5-HTP, Taurine, and more L-theanine. I'm not sure which component specifically is helping so much with my OI/NMH. I think one has some ALA in it too.

thanks ... Are you avoiding foods high in glutamates too ? Were you feeling wired but tired before taking these ? That's how I feel if I eat gluten, etc or take B12 or P5P. I would think that Theanine alone would resolve that feeling.

I found this on the TheaNAQ .

http://www.integrativepsychiatry.net/theanaq_neuroscience.html

TheaNAQ contains L-theanine which helps protect neurons from excitotoxicity by blocking glutamate receptors.

N-acetylcysteine helps prevent excitotoxicity by decreasing glutamate
levels in the synapse and supports the formation of glutathione which reduces oxidative stress.

Coenzyme Q10 is also included to help regulate glutamate, protect cell membrane lipids from
oxidation, and promote cellular energy production.

Helpful for:
Persistantly elevated Glutamate
Persistant Anxiety
Addictions/Compulsions

Supplement Facts Serving Size 2 Capsules Servings Per Container 45 Amount Per Serving % DV*
Vitamin C (as ascorbic acid) 100 mg 167%
Folate (as calcium folinate) 100 ?g 25%
Selenium (from selenomethionine) 70 ?g 100%
Proprietary Blend: 1000 mg N-acetylcysteine, Alpha-Lipoic acid, Coenzyme Q10, and Suntheanine (L-theanine) *

Percent Daily Values (DV%) are based on a 2,000 calorie diet. Daily Value (DV) not established. Other Ingredients: Vegetable Cellulose (vegetarian capsules), Microcrystalline Cellulose, and Magnesium Stearate.

Does not contain wheat, corn, soy, salt, sucrose, starch, yeast, artificial flavors, artificial colorings, or other known allergens.

That's an interesting combo. I aready take ALA twice a day, at breakfast and lunch. And I take 500 mg NAC between breakfast and dinner. And 5HTP for sleep only. It puts me to sleep so I can't imagine taking it during the day. . I stopped the CoQ10 but need to restart it. My problem was finding one without soy.

Just a quick warning on the theanine and 5HTP. If I get any gluten whatsoever and have to take these a for a few days in a row I start feeling wonkie ... lol ... Can't seem to wake up, a little off balance, etc ... DMAE appears to counter their affects to some extent tho.

I'm glad to hear that these are helping you ... thanks again for the info ... tc ... x

 

[Valentijn]

It does seem to have resolved the "wired but tired" sensation. I also sleep more soundly in general, without the frequent wake-ups. Trouble falling asleep was resolved when my ME/CFS specialist told me to avoid B12 after 1pm, since it can interfere with falling asleep.

I've experimented a bit with the 5-HTP, since some people say taking it in the morning works best for them, etc. Might try it at dinner time again, now that the B12 sleep problem is sorted out.

I stopped eating gluten a while ago, since it makes my gut itch, and seems to cause my whole body to swell a bit. I'm currently in the long and painful process of doing food challenges for damned near everything. I've avoided most free glutamate in my diet since discovering it was causing my migraines about 10 years ago.