HI I just had neurology appointment and would like some opinions

[grateful7677]

First, a little background: I had a TBI at three and was on Tegretol for 18 years. Just recently I was switched to Keppra which was fantastic at first, but then the RAGE and other side effects began and has literally destroyed my life.

In November I was diagnosed with shingles. It went away quickly, however I now suffer from post shingle neuralgia=worse than a migraine.

I saw a neurologist today at an epilepsy center (where I thought they would work as a team, ie...psychiatrists, psychologists, pain management etc...) However they do not.

Currently I take 500 mgs of Keppra.
I also take 5 mgs percocet as neeed for the pain (not really helping.)

The neurologist suggested adding Zonegran and wants to ween off the Keppra very slowly and continue PERCOCET.

I don't know if this is the best course of action. I want to go back to work, I have not been there since November. My boyfriend left me right after Christmas. My quality of life has deteriorated immensely in just a few short months. I am depressed, anxious, full of anger, isolated from all of my friends and family. (Sorry I cannot offer any cheese with my whine...)

What do you think about the doctors decisions especially with regard to continuing percocet?

Can anyone recommend an epilepsy center in the Northeast where the doctors work as a team to help patients????

Thank you for taking the time to respond...Thanks!

 

[momof3boys]

First off, Id like to say Im so sorry youre going through the Keppra Rage. I had it bad at first, and then I found that a vitamin B would help. So Ive tried it and it helped me out alot with controling it. My life is stressful, having three little boys under the age of 6 and being a housewife. Im on Keppra XR and Carbatral ER. Ive never been on Zonegran before. There must be a good reason why he wanted to take you off of the Keppra. have you tried taking the vitamin B to control the keppra rage if thats all thats bothering you with it? I've been on Keppra for years, but when the Keppra rage got to me, was when my dr increased my dosage and that didnt work well with my body at all. I started taking the vitamin B and was changed to Keppra XR at a lower dosage.

Im in Nebraska, the midwest. I go to the University of Nebraska Medical Center where they have a Epilepsy Center there. Im sure my location wont work, since Im probably too far away from you.

I really hope someone here can give you more information on finding a close Epilepsy center near you! Hang in there!

 

[carolyn]

Hi!
I am new here but can relate to what you call "Keppra rage". I have been on Keppra for only 2.5 weeks (valproic acid before that) but already got so 'angry' 4 times that I actually punched/kicked someone... I've never felt such 'rage' before and I am a bit worried because I still have to increase my dose. But I am hoping that it is temporary and the side effects will subside over time (that's what my neuro said anyway..).

momof3boys- you say B vitamins helped for this 'mean' side effect? I think I will give it a go too.

grateful7677- I am sorry you have to suffer from this horrible pain. Apart from epilepsy I also have chronic paroxysmal hemicrania, which is also quite bad so I feel for you. Hang in there!

 

[Nakamova]

Carolyn -- a B-supplement with B6 seems to help out many folks with Kepprage. It has to do with the effect B6 has on serotonin levels.

grateful7677 -- If the percocet isn't helping, why is the doctor pushing it? There are other meds used for post-shingles pain (including AEDs like Neurontin and Tegretol), or you could try Lidocaine patches. Techniques like biofeedback can work well too.
Zonegran may help your seizures. In my case it was problematic because it affected my stomach and appetite, as well as cognitive function. It's sometimes called the "Supermodel Drug" because it makes you thin and dumb. (No offense intended to any of the supermodels here at CWE). I got mildly depressed on it, possibly due to having low blood sugar all the time from not being able to eat. Low blood sugar is a seizure trigger for me, so I eventually had a seizure on it and switched to Lamictal.

 

[grateful7677]

Thank you all.

I have been on Vitamin B, and it does seem to help a bit, but just not enough. I do also have other dreaded side effects with Keppra including anxiety, hair loss, nightmares, strange seizures, insomnia etc...

It is actually the neuro. who wrote a script for my pcp to continue the perc. rx...going to see him today, do not think he will be in agreement, and really I am not sure I am either. (I am also allergic to a lot of different meds, and just got off Tegretol in the spring after 18 years.)

Well, start the zonegran tonight, hopefully I will get some sleep, there is not a lot to go around here, unfortunately.

Hopefully they will be able to figure something out! Thanks again! I also know that I would be feeling a lot better if I hadnt gained 30 pounds since October, due to lack of exercise and a change in eating habits..a vicious cycle! I think the Keppra was pretty good for me other than the rage if you are able to maintain a healthy and active lifestyle.

Thanks again!!!

 

[Bergoomay]

Greateful7677, I am sorry to hear about your tough time. My one word of advice about the B6 is to be careful not over take too much. I was taking 200 MG a day and my Dr's at Duke went through the roof. I was basically overdosing my box with vitamin B.

I understand completely the isolation as not being able to drive has been tough on most of us. Just keep your head up and look at the bright things of the day; such as any advancements you make toward not having tire, sick, have a seizure, etc. That is what I have had to do over the past 9 months after being diagnosed with E.

I am sending you a hug from most of us within this community.
Connie

 

[grateful7677]

..and the saga continues...lol...pcp would not prescribe percocet (thankfully) although this kicked in my KEPPRAGE and I screamed at the doctor for trying to put me on Lyrica or Lamictal (he kept getting them confused) when I just got prescribed Zonegran the day before. Id rather see the pain through then gain anymore weight...Tonight will be my first dosage of Zonegran...I have my fingers crossed. Thank you for the positive thoughts, Connie! Today was rough, but I am beginning to think a little more on the positive side....I am happy I have gone without percocet for about 4 days now!

 

[Nakamova]

Hang in there! One thing with Zonegran -- stay away from grapefruit juice, it's contraindicated (it messes with the absorption). And drink a lot of water. Also -- did your doc test your serum bicarb? It's recommended because of the risk of something called metabolic acidosis:

The FDA recommends that healthcare professionals measure serum bicarbonate before starting treatment and periodically during treatment with zonisamide, even in the absence of symptoms. If metabolic acidosis develops and persists, consideration should be given to reducing the dose or discontinuing zonisamide (using dose tapering), and modifying the patient’s antiepileptic treatment as appropriate. If the decision is made to continue patients with metabolic acidosis on zonisamide, then alkali treatment should be considered.

Full info at this link:

http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

The warning didn't come out until after I was no longer on Zonegran. I don't know if I had metabolic acidosis, but when I was on it, my stomach became so painfully acidic that I began avoiding foods that promote stomach acid.

 

[Eve]

I was on Tegretol for years and had to go off of it because it through my liver blood count off. Now I am on Keppra. It was really rough at first. That is why I am taking Zoloft along with it and that seems to help. I also take the brand NEW CHAPTER Coenzyme B food complex. I take 4 a day and it seems to help. :e: