Dr. appointment

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huskymom

huskymom

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Saw my Neurologist yesterday. I guess I am satisfied, although sometimes I leave there feeling like I didn't get my point across. Anyway, he thought by adding the vimpat 6 months ago, that I would be a changed person. Nope. As a matter of fact, I was telling him (and I think you) that I have been having "spells" of my mouth (left side only, to the middle and then back) where it starts to tingle like when you get a novocaine (sp) shot at the dentist. He kind of let that fall, and was saying stuff about a Vegas Nerve Stimulator. I told him no way on that, as I don't find my seizures debilitating, only the need for the occassional day off following a particularly bad event. Anywho, I got him back to the tingling part, and he confirmed that that is probably a small seizure. So now I am a tad concerned as these would be the first that I have while awake. Any thoughts? Are most of you like me, and just taking the med's and still having seizures? Am I crazy to just live this way? It is not horrible and I am not miserable by far!!
 
Is your neurologist an epilepsy specialist? It seems odd that he would bring up VNS, when as you say you don't find the seizures debilitating. Maybe he's just a fan of invasive treatments...

Dry or tingling mouth is a Vimpat side effect by the way, so I don't think they are small seizures. Just sayin'. :)
 
When this sort of thing was occuring with Rebecca, it was our decision that living with the occasional episode was far better than ALL of the added side effects and additional seizures. After we removed the medication and started using alternative therapies, it took her body awhile to clear itself of the added pharmaceutical toxins, but the additional weird seizures disappeared. She still did have an occasional tonic clonic. At that time they were still occurring about two or three times a month.

We continued to believe that moving into the direction of total health was our objective. That meant the best nutrition possible. Adding in vitamins and minerals that were supportive of brain and body health. Considering every trigger possible, and going for neurofeedback.

She has not had a seizure in 6 months.
 
huskymom said:
So now I am a tad concerned as these would be the first that I have while awake. Any thoughts? Are most of you like me, and just taking the med's and still having seizures? Am I crazy to just live this way? It is not horrible and I am not miserable by far!!
Click to expand...

That is the first you had while awake? Just a tiny, tingly feeling in your mouth? :ponder: Well, well, it could be a lot worse........I think that is the reason the doctor brought up the VNS. If you don't want to experience any type of seizures, however mild, then they will more than likely bring up all medications and possible treatments, including the VNS. Plus, I agree with Nakamova, it is probably a side effect of the Vimpat.

And yes, I am like you. I have tried 10 meds, had a lobectomy and had the VNS and still have an occasional breakthrough seizure, CP or TC, night or day.
 
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You two may be right, it could be the Vimpat side effect that I am experiencing. Since most of my activity happens at night, and around 3 times a month, I am going to hold steady in the boat. I sure don't need to start a whole new game of guess what med to change!
 
i think its a bit premature to call the tingling thing a " small seizure" . there are a billion things it could be. As epileptics , we have a tendency to think that everything that goes wrong with our bodies is either because of epilepsy or because of the drugs. may be we're right sometimes , but we tend to get ahead of ourselves.
You could look into electrolyte abnormalities ( low calcium can cause this) , or get your blood sugar levels checked . Of course , vimpat is also a possible culprit ;)
All the best
 
I agree

:agree:

Ditto to what Dr. Arvinder said.

Be sure to continue to keep your seizure journal (or start one if you haven't already) and track the tingling sensations. It might be a good idea to visit your primary care provider and see if the tingling might be something else.
 
drarvindr said:
i think its a bit premature to call the tingling thing a " small seizure" . there are a billion things it could be. As epileptics , we have a tendency to think that everything that goes wrong with our bodies is either because of epilepsy or because of the drugs. may be we're right sometimes , but we tend to get ahead of ourselves.
Click to expand...

I've experienced quite a bit of tingling sensations with all the meds I've tried, but I don't recall ever thinking it was a seizure.

And when I suddenly had blurred vision along with extreme fatigue and weight loss, it was my optometrist who made the diagnosis of Diabetes. I was stunned! Plus she was the one who asked if I had started any new drugs, and my answer was "Yes."

So, in that particular incident, it was a medication that caused the problem (not an AED).
I never in my wildest dreams would have thought that I would have Type 1 diabetes as an adult in addition to epilepsy and other problems, having to take insulin injections with every meal and at night.
BTW, the tingling sensation isn't any worse since I was diagnosed with diabetes.
 
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