Some possible good news. FINALLY!!!

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HALO
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Date Joined Nov 2004
Total Posts : 167
   Posted 1/26/2005 8:21 PM (GMT -7)   
I found some old records from a neuro isaw in the early 90's.  He did an EEG.  It showed an "isolated spike discharge".  I spoke to the neuro and he said that in a person that is having headaches, passing out or jerking spells it is EXTREMELY indicitive of epilepsy.  So, hopefully, that will prompt my current neuro to go ahead and treat me for the epilepsy that i was diagnosed with when I was 5.  I'm hoping that this is the answer to all of the problems that everyone of you has helped me deal with.  Keep your fingers crossed!
Shaun
No one left behind!
1*
RLTW


kayakmom
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Date Joined Jul 2003
Total Posts : 585
   Posted 1/27/2005 7:33 AM (GMT -7)   
Shaun, great work! Hoping it will help you get treatment! Hang in there and keep pushing for help

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/27/2005 12:24 PM (GMT -7)   
Does anyone know what an "isolated spike discharge" is??? lol
It sounds like a seizure.....but i'm not sure. I'm still getting used to the terminology.
Shaun
No one left behind!
1*
RLTW


kayakmom
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Date Joined Jul 2003
Total Posts : 585
   Posted 1/27/2005 2:34 PM (GMT -7)   
An isolated Spike discharge is a random abnormal brain wave. Spike and wave is one form that shows a seizure. An isolated spike is not a seizure because it is too short but does show a likely hood that seizures are possible. Sometimes it is called Epileptiform discharge. usually to be a seizure it is a certain number of seconds in duration and has the typical spike and wave.....

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/30/2005 8:28 PM (GMT -7)   
I received my records the other day. They read. "There is a mild amplitude, 8 to 10 cps ongoing activity which was seen all throughout and was occipital dominant. During hyperventilation there was a paroxysmal spik and slow wave discharge lasting a little lass than a second, being a little bit more pronounced on the right side, having an electrical field with frontal predominance. I'm so excited!!!! I have an appointment to see my neuro on tuesday. I can't wait to see if this will get me the proper treatment. Wish me luck!!
Shaun
No one left behind!
1*
RLTW


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 2/14/2005 6:20 PM (GMT -7)   
My neuro never even looked at the records I took him.  He just told me that based on the information he has right now that he is not comfortable treating me further.  He feels that due to some "unusual circumstances" that he is unclear as to my classificication.  Basically, he feels that because I became combative once, and have not reacted well to a few meds that it MIGHT not be epilepsy.  Apparently, the 2 abnormal EEGs, and 2 DX's from 2 other neuros isn't enough.  So, I found my Army records that clearly state a DX of epilepsy.  I'm going to find a different neuro and tell him I was DX'd by the army in 2002, and would simply like a different form of treatment.  Any advice would be helpful.  Is it really uncommon for someone to become combative after a seizure?  I have only done it one time.  Is it that uncommon for someone to not react well to a few different AEDs?  I was under the impression that was fairly common.  I don't know.....we'll just see what comes and deal with things day to day.

Shaun
No one left behind!
1*
RLTW


kayakmom
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Date Joined Jul 2003
Total Posts : 585
   Posted 2/14/2005 8:31 PM (GMT -7)   
One definitive thing neuros look for, if it is epilepsy it responds to seizure meds in many cases. OF course
there is intractable epilepsy that does not follow this rule!! I think they like to see it respond at least some to medication. You know my son's story. He did respond to seizure meds, then went through that misdiagnosis and it has been awful to try and get past ONE lying Epi. We are getting closer but current neuro and epi want a seizure on EEG before treating.....we may treat his other neuro conditions and one is treated with seizure meds.

I know it is so frustrating.

I have heard cases of people lashing out in a seizure when post ictal if held down or pinned. They do not have organized or thought out clear punches, I do not think, but am not sure. I know post ictal people can be really angry just because the neurons are so scrambed especially if in some parts of the brain...

keep pushing. WHat will this neuro treat you for?

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 2/15/2005 8:23 AM (GMT -7)   
I have responded somewhat to some a couple meds. The only problem is that the side effects were so bad that I had to be taken off of them. I have always been extremely sensitive to the AED side effects. Particuarly the ones that cause drowsiness, impaired cognition, and loss of balance. Which is pretty much all of them. lol My neuro is willing to treat my migraines. He is treating me with Topamax. However, I won't be at a theraputic level for either migraines or seizures until about the middle of April. So, I hope the Topamax works for me. In the mean time, I'm going to take my Army records that have a clear diagnosis of epilepsy and go to a different neuro. Tell him I have a DX of epilepsy, I'm taking Topamax, I'm not very happy with it and would like to explore other forms of treatment. That's my plan
Shaun
No one left behind!
1*
RLTW


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/15/2005 8:55 AM (GMT -7)   
Keep pushing for it. I am glad you at least have some minimal treatment now!! My son is also very sensitive to the meds. Our neuro is willing to start treating his PLMD (with a seizure med) after we have one more test. Had the sleep study last night. Probably have an AEEG to do and then I can get him back on meds.

It is awful that you have to fight so hard to get treatment when Epilepsy has so many things that are not easily tested!! There are so many variables!!

hang in there Shaun. Hoping the Topamax is ok for you!
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