New and not myself

[giveasmile]

Hi everyone, I'm so sorry for all the confusion. Nakamova, thank you so much for trying to help me and for posting for me. I think it's all working now.

I am brand new to seizures but not new to health problems. For years I was treated as a psych patient when I really had Cushing's Disease from pituitary tumors. Now I'm being told I have seizures in my sleep and some other type of seizure in the daytime that I am not aware of. I never knew this existed. I thought all seizures were very violent and looked the same. Certainly that others would know I was having them even if I didn't?!?

The neurologist said this is not true. She said everything I wrote on her questionaire was indicative of seizures and that my MRI and EEG said they are happening frequently or have been happening for a while. Honestly I don't remember which of those she said because I was too busy trying to tell her that I was NOT having seizures and didn't need medication.

I guess I was a little caught off guard because I've already lost all my pituitary and adrenal funciton to Cushing's, lost years of my life to psychiatric cocktails I never needed to be on and because I'm still dealing with the financial fall out from 8 surgeries to repair everything and all the medications to treat the panhypopituitary/adrenal insufficiency...

I did always wonder why the other "cured" Cushing's patients were not needing ortho surgeries for ongoing injuries. The endocrinologist just kept saying it was because the Cushing's gave me osteoporiosis (at age 29), the osteoporosis gave me bone spurs, and the Cushing's weakened all the tendons and muscles so the bone spurs were tearing them. The neurologist says Cushing's may have weakened everything but seizures are causing the new injuries. She said that if I break a bone during one of them and don't get to my intramuscular adrenal shot in time I'm not going to make it so I have to absolutely take the seizure med for at least one year before she can even talk about causes or anything else.

I really thought she was exaggerating but then I came here and started reading about all the broken bones.

So I started the Keppra but everything inside of me is screaming at me to stop taking it. It makes me feel very strange (even a half pill) and it makes my vision go wonky and eyes feel weird.

I probably need to read more instead of ramblingon and on. I think the medicine makes me depressed because none of this post even sounds like me. Sorry for all the rambling and thank you.

 

[MuayThaiFighter]

I'm so sorry you have to go through all of this. I liked Keppra at first because it didn't have such a bad reaction to me at first. Maybe Keppra isn't the right drug for you? Usually they want you to stay on the medications for awhile, but I really believe in listening to your body first. That's just my opinion.

I hope that your spirits raise some soon and you start feeling some relief. Best of luck.

 

[Nakamova]

When someone mentions epilepsy/seizures, folks tend to think of convulsions with loss of consciousness. Which is why it can be pretty surprising to learn that the most common kinds of seizures AREN'T the tonic-clonic (grand mal) variety. More common are simple partial seizures (Sensory disturbances that are a bit like migraine aura), and absence seizures (which are brief episodes of "zoning out" -- to someone observing, you appear to be daydreaming). It sounds like the latter variety may be what you are experiencing, since you aren't aware of them. More information about simple partials and absence seizures here http://www.epilepsy.com/Epilepsy/seizure_simplepartial and here http://www.epilepsy.com/EPILEPSY/SEIZURE_ABSENCE

The meds can affect each person differently. Some people might experience annoying or intolerable side effects, while others may not have any problems. For some, the side effects may recede after an initial break-in period. Keppra can affect mood, so if you feel it is messing with your mood, in addition to other side effects, let the neurologist know, and ask about meds that might be a better fit.

Best,
Nakamova

 

[jyearta]

Hi Giveasmile,

I'm sorry that you have/are going through so much.

This forum has been a whole new life for me, meaning I'm talking to people who understand me when no one can. I have learned so much from the people here, things I wished I had have known in my years dealing with E.

Go into all the forums and read as much as you can, or just ask any question you wish.

Just know that you are NOT alone.

 

[lizzyb831]

Welcome! It must be frustrating to have these continuous issues and just wanting something to be taken care of. Hopefully the drs listen you and try to prescribe something else to ease some of the issues

 

[giveasmile]

Thank you all for your support and feedback. I will definitely let the doctor know if my mood does not improve.

Thank you also for those links. I was one of the people who thought all seizures were like tonic-clonic (grand mal). I followed those links and then read about every kind of seizure they had listed. Simple partial seizures (all 4types) and complex partial seizures are paragraphs right out of my life for as long as I can remember.

I can't change the past but I am relieved to know that maybe, just maybe, things have a chance to stop rolling downhill. :woot: