New here-- From Long Island NY

[400ex]

Hi all, I am 21 years old and had my first Seizure when I was 15/16 years old. I had my second one because I was naive/stupid enough to think I would never have one ever again and completely stopped my medication (TOPAMAX) and had one about 4 months later.

Since then I have been taking Topamax 100mg x2 daily and haven't had any seizures since then. However, I have developed some horrible muscle spasms through out my body and some horrible head pain and pressure. I have seen my neurologist for it, he doesn't believe it is seizure related.

We have ran an EMG, MRI, 4 EEG tests 2 of which came back normal and 2 I am waiting for the results now. All of that since I started having those horrible symptoms. As well with those symptoms I have a hard time falling asleep, I dont know what it is, but I just cant fall asleep, I think it may be anxiety as I had these twitches since August of 09 along with the horrible head pain and pressure and still do not have a diagnoses!

The Topamax lately has been making me feel a lot more dumber then usual, but it is clearly working and do not want to change because I am afraid I will get hit with another GrandMal.

Any advice?

If you are from Long Island who are your Neurologists? I see Dr.Haimovic.

 

[hootie]

The first thing I would do is look up any "side effects" that the drugs has been shown to cause. The next thing I would do is try to figure out if this drug causes any vitamin/mineral deficiencies. If it does, I would make sure to *minimally* take a multivitamin/mineral and maybe see a natural doc that knows about supplementation while on drugs. It sound like the drug is working for your seizures, you just are not digging the "side effects". Side effects can be caused by deficiency...:twocents: FWIW!

Welcome to the site!:cheers:

 

[400ex]

Thanks for the reply, I went to the epilepsy center in NYC and Dr.Devinsky wanted to do a 7 day EEG test of weening me off of the Topamax and basically inducing me into a seizure. I was VERY scared about doing this..

Dr. Devinsky assured me that it could be the Topamax doing this to me even though I have been on it for so long and that the side effects may have not given me problems a year ago but are starting to give me a problem now.


But the doctor I go to every 3 to 6 months says no, not at all.

I may go see another doctor near me that I actually found on this website Dr Gudesblatt and see what he has to say. I may ask for a bloodtest to see what the Topamax is doing to me, maybe lower it a bit.

 

[dfwtexas]

Hi, welcome to our group. I am on Keppra, so not sure about your med, but there are a lot of people on here taking the same drug. There are many drug options and if you neuro switches you, he will do so in a way of not triggering a seizure. I know the fear of having a seizure can be scary....it's almost enough to stop you, but if your drug side effects are that bad, it might be good to discuss with your doctor. Not sleeping well and being under stress are two huge triggers for us with E and I would think you would be under more stress from the side effects. Best of luck, glad you found us.
jenn

 

[Cint]

Hi 400ex,

I also take Topamax along with Keppra. The Topomax does make me more forgetful and initially made me lose a significant amount of weight. I don't suffer from insomnia with Topamax or the twitches, but different meds effect each of us differently.

From www.Drugs.com

Topamax Side Effects

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Topamax:

Constipation; decreased sweating; diarrhea; dizziness; drowsiness; dry mouth; flu-like symptoms; headache; loss of appetite; nausea; nervousness or anxiety; numbness or tingling of the skin; runny nose; sore throat; stomach pain or upset; taste changes; tiredness; trouble sleeping; weight loss.

Seek medical attention right away if any of these SEVERE side effects occur when using Topamax:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); blood in the urine; blurred vision; bone pain; chest pain; confusion; decreased coordination; depression; double vision or other vision changes; eye pain; irregular heartbeat; loss of consciousness; memory problems; menstrual changes; mental or mood changes; muscle or joint pain, cramps, or weakness; rapid, shallow breathing; red, swollen, blistered, or peeling skin; ringing in the ears; severe or persistent loss of appetite; severe stomach, side, or back pain; significant weight loss; speech problems; stupor; suicidal thoughts or actions; tremor; trouble thinking, concentrating, or remembering things; trouble walking; unexplained fever; unusual bruising or bleeding; unusual eye movements; unusual tiredness.

 

[Meetz1064]

I have

to side with Dr. D. Having been on a number of meds, several of them for long periods of time, I can tell you that even meds that you've been on for a long period of time CAN still start to have side effects much later on.........even years into taking them.

For me, I have 2 instances. When I was 18, and in college, I went toxic suddenly on Dilantin. I had to be hospitalized and taken off of it. NOT FUN. The other time was when I was on both Lamictal and Depakote for 7 years together. More than 7 years together, and I suddenly went toxic on these 2. I had had no problems, but suddenly I couldn't think, I couldn't stop shaking, and I was gaining weight at such a rapid rate, it was GROSS.

Our bodies change.......the hormones change, which can cause the way our meds interact to change as well. Some doctors totally forget this.

Why don't you check out the Kitchen and the Library? We have plenty of information floating around in there that you might find useful...

Take care!

Meetz
:rock:

 

[PhylisFeinerJohnson]

Below is a compilation by forum members of http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=3&threadid=58925 who have had positive experiences with docs over the years. This list is based on personal recommendations and, of course is purely subjective. But I thought it might be helpful if you're looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor in the New York area.

New York

Dr. Carl Bazil, Columbia Comprehensive Epilepsy Center, New York City, NY

Dr. Orrin Devinsky, NYU Comp Epilepsy Center, NY (I've read real good stuff about him, but I think Bernard said he wasn't too crazy about him.)

Dr. Werner Doyle, NYU, NY

Dr. Mark Gudesblatt, South Shore Neurological Associates, Long Island, NY (That's your doc, right?)

Dr. Cynthia L. Harden, Cornell-Weill Medical Center, NY

Dr. Lawrence J. Hirsch, Columbia Comprehensive Epilepsy Center, New York City, NY

Dr. Steven Karceski, Columbia Comprehensive Epilepsy Center, New York City, NY

Dr. Daniel Luciano, NYU, NY

Dr. Alison Pack, Columbia Comprehensive Epilepsy Center, New York City, NY

Dr. Stanley R. Resor, Columbia Comprehensive Epilepsy Center, NY

Hope this helps...

 

[400ex]

I am going to see Gudesblatt today either him or one of his associates I am pretty excited who ever I see I just need to see a different doctor from who I've been seeing. I've been suffering from these crazy symptoms for 6 months and last night I've been doing a little research and I possibly could be getting seizures due to my pitutary gland.

They found an adenoma on it when I was younger and they didnt think anything of it, Just had to follow up with it every year which they havent been doing because they found the adenoma with an MRI w/ Contrast. They cant see the adenoma with out contrast so now they think its not there anymore? Anyways I got a seizure when I was 16 out of no where after they saw the adenoma. So I am going to bring this up to the new doctor today to see what he thinks and maybe that maybe why I get seizures?

 

[400ex]

I just got a call back from my other neurologist he said in my 48 hour eeg they saw a "rare" spike in my sleeping. I dont know what that is suppose to mean, but I asked about driving and he said its ok to drive, but I will have to be on my medication forever being I am on medicine and I did have a spike.

I am feeling kind of depressed.

However, when I went to go see Dr. Anand today (I thought I was seeing Dr. Gudesblatt) Whom I thought was a great guy. At first I thought was a little arrogant, but he seemed very humble and helpful. We're doing a lot of tests in the next 4-6 weeks that will hopefully give me some answers.

MRI,MRA,VEP, Sleep deprived EEG, and 24 hour EEG and of course a Blood Test.

Hopefully after ALL those tests, I will have some better answers.

 

[PhylisFeinerJohnson]

My step-father was a doc. Many of them think of themselves as Gods. But if he doesn't listen to you and answer your questions, then it doesn't matter what he thinks of himself. Sounds like you're on the right track though. And if you decide Dr. Anand is not for you, ask for Dr. Gudesblatt for your next appointment.

(My neurologist is in a group practice and even though I have to wait longer for an appointment to see him, it's worth the wait. He is WONDERFUL...far above par!)

 

[400ex]

Thank you for the support, I love this website so much. I am already feeling better about the "rare" spike I have been told that my other Dr. Haimovic has told me he saw in my 48 hour EEG. I am calling back to get more information. I was so stunned I didnt even ask any questions. He didnt explain to me what this spike meant or anything. He just told me that if we decided to ween me off the topamax or switch medication we will have to take this EEG into consideration. Oh and that I can still drive, so I am assuming it isn't serious.

A Family Doctor that we are close with suspects that I have sleep anea and he believes that these spikes may have been from the sleep apnea that isn't diagnosed yet and is probably nothing to worry about at all and is most likely nothing seizure related as I have never had any problems under the medications I am taking. However I am taking that with a grain of salt as Epilepsy comes is so many different forms.

I will be getting a sleep apnea test soon Dr. Anand suggest I get one.

 

[PhylisFeinerJohnson]

Get a load of this: "One-Third Of Epilepsy Patients Have Sleep Apnea"

Here's the link to the article:
http://www.talkaboutsleep.com/sleep-disorders/archives/Snoring_apnea_epilepsy.htm

 

[Nakamova]

A "rare spike" can be tough to quantify -- it could be anything, including a false positive (not that I'm saying it is). It could be an indication of a lowered seizure threshold, or a migraine, or as your doctor suggested, sleep apnea. It's something to take note of, but not necessarily act on without further info.

 

[RobinN]

My daughters seizures increased dramatically from the medications that were tried with her. The side effects were unacceptable. We continue to work with alternative therapies to raise her seizure threshold, and lengthen the time between each episode. It appears to be successful so far. Certainly not a quick fix, but it is a lifetime fix IMO.

 

[400ex]

I got a call back from my neurologist that I have been seeing for 2.5 years. He said the Rare spike is most likely not from sleep apnea as sleep apnea effects the hole brain. he said the rare spike is coming form one small part of the brain and only happens when I sleep. He also said its nothing to worry about its just something to think about if we need to switch medications and or stop medication if I never have a seizure again which he think I will never have again, which is something he's not going to chance.

But he said this rare spike could be anything, he said it could be a number of things other then epilepsy. He said the brain could of had a vitamin deficiency and acted up he gave me a list but he has to report it as a rare spike.