Degenerating

[kirsten]

I wrote a few months ago when I was recommended for an MRI because the doctor said I had too many MS symptoms. I saw the neurologist, who told me my medical aid doesn't pay for that test so I ended up not having it. I plan on upgrading so that I can do what ever is possible to improve the situation but for now I am interested in hearing others' experiences and knowledge about what is happening with me.

I went onto Epilim some months back and I am only just beginning to get rid of the side effects now. The trouble is that something different than usual is happening. I have temporal lobe epilepsy and no matter how bad my epilepsy ever got, my symptoms were largely limited to what happened during seizures. These days, some weird symptoms have been constant. First of all, my cognitive functioning is bad enough for the doctor to have labeled it dementia. I can write and work but sometimes everything becomes jumbled in my head. When I'm interacting with people or am out on my own, I usually lose focus entirely and have no clue what is going on. I have no memory and often forget things a second after I hear them.

Next, I have, somewhere along the line developed low level face blindness. There are some people I don't recognise and some that I haven't been able to place although I do recognise them but last weekend I failed to recognise someone I know rather well. I guess it makes sense in terms of my epilepsy since face blindness comes from a problem near the occipital lobe and under the temporal lobe--which is exactly where my seizure focus is and where the seizures radiate. Still, I fail to see how I could be getting worse. Isn't epilepsy something that stays the same unless treatment makes it better?

Thirdly, I have days when I am very clumsy. I struggle to type, can't spoon coffee into a cup and break things. I guess those are the main issues. I've also been waking up shaking, although I haven't felt anxious at all.

These last months I have been too depressed to socialise with anyone at all or to communicate. I have been working from home and went without seeing or talking to friends for two months solid. I'm starting to pull myself out of it but living the way I am at the moment makes it very difficult. Last night I read a definition of entropy that said it meant a complete loss of information that resulted in absolute disorder and, eventually, meaninglessness. Well, that is exactly how I view what is happening to me. My mind is not holding onto any information, there is complete disorder and that is making my life meaningless. Does that make sense?

I know that my only best next step is to get onto a better medical aid, which I am doing but, for the moment, I just can't continue not having a way to make things better, if only emotionally.

 

[Chaz1]

how much Epilim are you taking?

 

[kirsten]

1000 mgs

 

[QueenieKP]

Hi Kirsten, don't feel qualified to comment on the medical aspects, but I think the isolation is probably exacerbating things.

I know it's hard making contact when you are feeling so 'meaningless' but I genuinely think that sharing how crap it is might help. Even if it's just on the boards but if you can make some rl contact are their any local support groups?

Q

 

[Chaz1]

did all these symptoms start when u started on this med? my Son uses depakine and hit depression couple of short months in....

 

[kirsten]

No. I was taking Tegretol and I developed hyponatremia from it. They changed me to keppra nd then Epilim but the bigger problems started since the hyponatremia began.

 

[Endless]

Kirsten,

I'm so sorry you are going through all these neurological symptoms. I went through a similar decline until I finally got a good diagnosis and received treatment. It turned out I had a rare disease, Idiopathic Intracranial Hypertension, that was causing symptoms similar to yours and that kept getting worse. I'm doing better now.

Rush getting on that better medical aid. Fast as you can go. It's a good idea for multiple reasons.

Everyone is different when it comes to meds. Did any of your symptoms start when you started on any particular medication? Some medications are famous for adverse reactions, like Topamax. A good place to look at the package inserts for different drugs is Dailymed. It's an American National Institute of Health site, so if a drug has a british name you may need to translate. Invaluable for looking up adverse reactions.

http://dailymed.nlm.nih.gov/dailyme...essionid=84301a52a73f6cae7fe31953342a1a63766e

I'm not a doctor or any other kind of medical professional. As just a human being with a neurological condition (Intracranial Hypertension) and seizures, it's my layperson opinion that you need that MRI - sooner rather than later. The MRI will screen for many neurological conditions, not just MS.

Has your doctor run other tests, like blood tests?

Do you have a support system to help you? Someone to go to appointments with you, manage your health insurance and bills for you? Drive you if you need it?

 

[kirsten]

Did any of your symptoms start when you started on any particular medication?


Has your doctor run other tests, like blood tests?

Do you have a support system to help you? Someone to go to appointments with you, manage your health insurance and bills for you? Drive you if you need it?

My symptoms began when I was taking Tegretol. That happened because my sodium levels dropped as a result of the med, which caused encephalopathy. But after I changed to Keppra my sodium levels returned to normal so I no longer have that explanation. I guess it is possible that I have lasting problems because I wasn't treated very carefully when I had the encephalopathy. My doctors really let me down on that one.

As far as blood tests, we've done the usual blood levels and counts, the electrolytes and thyroid levels. Epilim can also cause hyponatremia and I haven't done sodium levels for a while so that is something I should check.

My family lives on the opposite side of the country and I've moved relatively recently from a town where friends would have been massively supportive. When I had the encephalopathy friends helped me with shopping and taking me to doctors' visits but I guess somewhere along the line I stopped asking for help. I don't have long histories with the people here and don't want to put a burden on people. I'm also too embarrassed to be around people because they aren't terribly patient or understanding of my thinking and memory problems. I'm not myself anymore and don't have much to offer friends. That is why I try not to spend time with anyone these days.