Seizures and Shouting

[Your_Average_Joe]

Hi,

Every time I have seizures, I shout nonsensical words (words like, "Ahhhh-Jahh!!!" or "Ehhh-Geee!!!"). Is this normal? (by the way, I have MANY seizures, every day, especially if I overdo things, because I take on extra fluid, and I believe that the fluid is pressing on my brain - I can actually hear fluid in my ears, when I shake my head - by the way, my edema is mostly on my right side, for some reason - my circulation problem is on both sides, however). Anyway, I was given Keppra, to take for my seizures, but I've decided not to take them, because I feel that my seizures are only being caused by my severe edema (which is caused by my circulation problem, that I've had since birth).

NO ONE know why I've had a circulation problem, since birth, but it's really wreaking havoc. I have terrible pain, crazy neurological sensations, migraines, chronic pain (SEVERE), severe allergies, Sleep Paralysis, rare soft-tissue cancer, hypnogogia, narcolepsy, etc.. I think that my circulation problem has been causing all of these problems and I wish I could find someone that knows what they're doing. All of the Doctors that I've seen just load me down with Lasix and Potassium, Stimulants, Narcotics, Seizure Meds, etc. I've even been on Prednisone, which I hope I NEVER have to do again. Lots of antibiotics, too.

So, to recap:
Is it common, to shout, when having seizures?
Do the risks of Keppra outweigh the risk of seizures?
Does anyone know why a person would have a circulation problem, beginning at birth, which causes more and more problems, from birth on up through adulthood?

Thank you, in advance, to ANYONE who can help me. Even if you don't know what I have, but you share the same symptoms - that would be great, too. Maybe, together, we can conquer this. Of course, I doubt that there's anyone out there, like me. I feel all alone, with this. It's very difficult, to stay positive, when you're in severe pain all of the time, and then, you're having seizures, etc..

Joe
PS> I've attached a picture, which shows my (mostly unilateral) edema.

[jake101101]

I only had one seizure in my life and it was due to antibiotics I was taking for a very severe bacterial infection.  Before my seizure I had Migranes with Auro, insomnia, confusion and slowness and the biggest one is rapid eye movement only when the eyes are closed.  Tinnitus and a second sound that sounds like a flute and hearing sounds and noises of people speaking which are not there.  I screamed before having my grand mal seizure, the pain in my spine was above any scale of pain.  Doctors are completely clueless as to what caused it even when I tell them the combination of factors that lead to it.  But then again, I know a lot more about medicine than the average nurse or doctor.

[dbbusy]

shouting OR making noise IS common....MY seizures start on the lft sd of brain by my language.....IF I were you I would see a doctor.......and tk your meds.....

[Your_Average_Joe]

Actually, I've been hospitalized for my edema. I didn't include a photo of my legs, but it would be more obvious to you, if you saw them, because they are MANY colors. When I get my seizures, the entire left side of my body spasms, as if I'm being electrocuted on that side. In fact, it feels like a jolt of electricity hitting a series of nerves. Immediately following this unilateral jerking, I shout the nonsensical words. Would this confirm the Tourette's Idea?

As far as me not wanting to hear about exercise, I have no problem with it. My reason for not doing any, recently, is because every time I try to walk for any period of time, my legs swell even more, and it takes three days, to get the edema down. I'm afraid of ending back up in the hospital. My Doctor had the same advice, though, so I guess it's okay. As far as diet goes, I'm already consuming very little carbs, no sugar, no oils, no soft drinks, no sweets - only fresh fruits, vegetables and chicken (with occasional beef). I also eat fish, on occasion. I've cut way back on my salt intake and I don't drink caffeine. I don't smoke, I don't drink and I don't do illegal drugs. The only meds that I am taking, right now, are:

Lasix, Potassium Chl, Oxycontin and Testim (Testosterone Gel).

I'm taking the Testim, because I have no male hormones. My body stopped producing them, MANY years ago.

By the way, the picture that I included, is from several months ago (I used that photo, to demonstrate the unilateral edema), Since then, I've lost 60 pounds. I attribute most of that weight loss, to eliminating corn, from my diet. A few months ago, I found out that I am allergic to corn and also, one other food, which is unknown at this time). Part of eliminating corn, was not eating anything with high fructose corn syrup. I think that helped a lot, because I was eating and drinking a lot of things that contained HFCS.

I stopped the sugar, last week, and already lost 4 pounds. But, keep in mind, that I have had this circulation problem, for my entire life, so something is still not right. I haven't always been this big, either. In fact, I had a nice trim body, in the Army, and before and after the Army, I was very muscular. I love to exercise and stay fit, and have always worked out, when I was able. But, as I got older, more and more health problems equaled less activity (mostly due to pain and swelling). Most of my pain actually began, when I was working out, daily, at the gym, and running track (also, daily). So, it was always confusing, to me, why someone so physically fit, could start having such terrible health problems. Again, remember that this problem began at birth, so it was only a matter of time, before things got worse.

Anyway, after losing the 60 pounds, I am able to walk a little easier, but I still have a LOT of pain and swelling. So, you're right about losing weight, as far as it helping some. I just wish I knew why I have had a circulation problem all of my life. Thank  you, for your info. That Tourette's idea has certainly given me more to go on. I will check into that. :-)

Joe

[ggreg]

I do not know anything about your circulation problem, whatever the particulars are of that situation.  But I can tell you that when you say you're having a seizure and you shout out nonsensical phrases, that sounds like Tourette's Syndrome.  Keppra is a perfectly good medicine with few side effects that will help control the seizure activity aspect of Tourette's.

As for any abdominal edema, usually that is accompanied by a discoloration of the skin, whereas you do not have that.  But anyway, if you are on some other medicines for whatever ails you, you can review those side effects and see if swelling or bloating is one of them, and your doc can change you to another kind.  In any case, what I think might help you with swelling from unknown cause, as well as your sleeping symptoms, and you don't want to hear this, but increasing activity/exercise on a regular basis to where you break a sweat, increasing protein and reducing carbs, so you can lose about 30-40 pounds, I think you are bound to feel a whole lot better in general by doing that.