Hi everyone. Can you help me?

[alan777]

My name is Alan. I I am 33 years old. I have Grand Mal Seizures, but only when I am sleeping. The doctors could never tell my I do have them when I did have health care. They did a CAT scan, but no MRI's. I also have never had a sleep study done on me, which I found very strange years after my first seizure. I control them by taking 200 MG of generic Tegretol in the morning as soon as I wake and 200 MG when I go to bed. I have not had a Grand Mal seizure in a couple of years now. Thank god for that.

But that is not the issue. The issue are strange periods of time that happen when I am awake during the day time when I lose equilibrium and muscle control. I have never told a Doctor about these day time periods because I have not had health care for a few years now. They have been occurring for about 5 years now.

The severity of the loss of equilibrium and muscle control varies from period to period. Sometimes I am able to walk and talk pretty well. At those times it is not bad at all.

But when they get real bad sometimes my head feels like it is full of cotton and I can't walk or talk well at all. It feels like a wall between me and the world. I can think inside my head logically, but making that happen in the real world is difficult to impossible. I can't walk down my stairs in my apartment with out almost falling. Sometimes my left leg will tense intermittently and my hands will shake. I will just stare at something, anything, for a few minutes trying to make my body work. These are the times I am very scared of what is wrong with me.

They happen pretty infrequently too. Sometimes I won't have them for a few weeks. Sometimes it happens twice in one week. Sometimes they happen when I wake up. Those one's are usually very bad. I don't think they are triggered by stress. I have tried to record them as they happen and most times I am not that stressed at all. I suspect that they are seizure related just for the fact that I do have Grand Mals if I don't take my meds.

I would also like to add that my seizures did not start until I was 23. I did not have them when I was an adolescent or a teen ager.

Does anyone recognize these symptoms? I have tried to do research into the symptoms, but I have no idea.

BTW, I am having one of these periods/things as I type this.

Thank you for having this forum. I feel very alone in all of this. I have tried to explain these to my family but they just cannot understand what is going on.

 

[joan]

Hi Alan and welcome * There is a list of seizures. It sounds like a seizure to me but I am not a Dr. I just know there are many more types of seizures than I ever knew.
I just wanted to say, hang in there. You are not alone. We all hang together to help each other. You are in good company and surrounded with great information.

BE well
joan*

 

[alan777]

Thank you for the kind words Joan. Can you please let me know where the list is? I looked for one but I could not find it.

 

[joan]

Im sure its here somewhere but just easier for me to post it this way.

http://www.epilepsy.com/EPILEPSY/types_seizures

My son is almost 20 and he only has grand mals. SO far they havent "morphed" into anything else. My daughter (16) has myoclonics seizures and so far only one grand mal. We pray its the only one. She now think shes also having absence seizures. SO i consider her "morphing" lol they are young yet so we are still trying to figure it all out.

Has your diet changed? sleep habits? Worrying more than usual? Nervous? Anxious? Those things will make things interesting as well. I dont know where you are but there must be some sort of health care available for you.

Be well and hang in there
joan*


http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

 

[alan777]

Thank you Joan. I will research that list. The only real stress in my life right now is being unemployed. I have always been a bad sleeper/insomniac. I try to keep a good diet high in lean protein, whole grains, and fruits/vegetables to keep my weight down. it is just that the "seizure" I had last night was the worst I have had outside of waking up from one of my Grand Mals. It scared the crap out of me to put it bluntly.

BTW, you have beautiful kids. I have a nine year old daughter. I see her changing into a teen ager already. I hope they both stay well.

 

[Ruth]

Hi Alan, and welcome. We are glad to have you here.

The shaking are tremors, they are seizures. I take mysoline for them. What you are having when you are awake, sounds like seizures to me. Tell your neurologist about your symptoms. He can give you medicine for it. Write down a diary your symptoms, time of day or night etc. That will help your doctor.

 

[alan777]

Thank you for the reply feast. I would tell my neurologist if I had one. But I will keep a diary now. I see that many of the people here do. It sounds like an excellent way of keeping track of what if happening to me so when I DO see a doctor about this I will be better informed to help them. I might just have to pay out of pocket for this.

You take mysoline feast? Do you take any other kinds of meds? Because I already take 400 MG of Tegretol daily as of now. I read the list Joan provided and I think it may be Secondarily Generalized Seizures. The description is the only thing that seems to match what I am experiencing.

 

[skillefer]

Hi alan! Welcome to CWE. As you can tell, a friendly group of people. So feel free to ask questions, chime in, or just vent in the padded room as needed. Is there a state agency or program that you qulaify for for medical? I know in my state, there is short term insurance programs available as well as medi-cal through the state. Don't know about oregon..but I'd check it out. Neurologists can be pricey. As can meds.

 

[Meetz1064]

Hi, hello

and how do you do, Alan. Welcome to CWE, and I apologize for the delay in stopping by to say hello. I've been busy with a writing project.

There are lots of nooks and crannies jam packed full of great information in this AWESOME house that our host, Mr B, built for us. So sit down, put up your feet, and I am sure that Eric or Buckeye will be by soon with some really decent coffee (theirs rocks compared to mine).

I do want to point out that E knows no age boundaries. It has a habit of showing up whenever it darn well pleases...and has even been known to show up in people in their 70's. So, don't worry about that.

E is also a LABEL for the fact that you have had 2 seizures or more. Check out the Epilepsy 101 link in Skillefer's signature.....you'll find TONS of great info there.

Oh, and Alan? Don't be afraid to ask a question. With E, KNOWLEDGE IS POWER. And the ONLY STUPID QUESTION regarding E around here is the UNASKED one, OK?

Take care,

Meetz
:rock:

 

[carlasmoore]

Hi Alan,
we are two alike creatures. I only have seizures when asleep and also take Tegretol. I've been on Tegretol for 25 years and am now increasing my dosage. You are having what I call partial seizures during the day. Mine begin with a strange feeling, I get a cold wave thru my body and then a hot flash. I'm stuck in time, it's called an aura, or de ja vu. Pleae mention these episodes to your doctor as it sounds like you may need to increase your dosage but DO NOT increase unless under Dr's supervision.

Welcome to a beautiful place where you can be you and disclose everything or nothing you want to discuss. Welcome aboard, this is a great place to roam or chat. you are among friends.


Take Care,
Carla

 

[alivenwell]

Welcome! Have you recently changed to a generic cheaper medication? They are discovering that switching from brand to generic, one generic company to another company and generic back to brand can cause 'breakthrough' seizures.

That sounds like a form of stress due to uneasy feelings about falling asleep when the worst seizures occur. Stress is such a huge factor for me. I take a really long walk before bedtime with my border collie mix. Honest, that exercise really clears my mind. Employment can be such a tricky thing with this disorder. I've had total control for over 7 years (still counting). My image at work drastically improved, but I'm prepared for the bottom to fall out at any time. I recently bought a piano and I play it a lot. Music is great for this disorder.

 

[drarvindr]

Dear Alan
Your symtoms sound a bit like a partial seizure. you should get an EEG and an MRI if possible. your drugs may need a bit of tweaking. talk to your neuro ASAP.

 

[matchu]

yes indeed, going from Randall's to Walgreen's was not an good time, and i got charged double the price