[Belinda1217]

This makes my 21st drugAnd I'm refractory never been controlled more 8-10 months back in the early 1990's.I won't get up my hopes about this one either, since I'm starting to itch like crazy which is a allergic reaction for me.
I hope it stops.
Belinda

[lor]

Neat Belinda, I hope it works. I'm supposed to start it. My Dr told me about it long ago. I'm thinking of calling them back. You see, they called a few fridays ago & asked if I could come in that monday (I imagine cuz the Dr had time). She told me that since I had a couple szs since they took me off of Lyrica, maybe they could call in this perscription for Vimpat. Later they called & said the Dr would like to talk about the med (Vimpat) 1st.

[Belinda1217]

Originally Posted by lor

Neat Belinda, I hope it works. I'm supposed to start it. My Dr told me about it long ago. I'm thinking of calling them back. You see, they called a few fridays ago & asked if I could come in that monday (I imagine cuz the Dr had time). She told me that since I had a couple szs since they took me off of Lyrica, maybe they could call in this perscription for Vimpat. Later they called & said the Dr would like to talk about the med (Vimpat) 1st.

It looks like I'm allergic to Vimpat and this was my 21st drug.
I tried Diamox with no luck and I'm now now having a doc tell me I'm not allergic to it because I don't break out in a rash I just itch like crazy. I was on it 5
days when started itching. I hate doctors who think they know it all.
Belinda

[roybean88]

Got a starter kit from the doctor for Vimpat. I am kind of afraid to take it. I had some issues with Topamax. However could use the weight loss effect is there is one? Anyone use it for a longer period of time? If so what did you think about it??

[RhiannonsMoon]

Originally Posted by Belinda1217

I'm now now having a doc tell me I'm not allergic to it because I don't break out in a rash I just itch like crazy. I was on it 5 days when started itching. I hate doctors who think they know it all.
Belinda

Hey Belinda,

I was put on an anti-depressant called Axit. I was fine for 5 days then my head began itching. No where else just my scalp. It would drive me insane. Burning itching. I scratched until I bled. I told the doc and he said it must be my shampoo (I don't use shampoo it has too many chemicals I use a herbal lotion & tonic). This was a dr who didn't want me to take any meds for acute intractable anxiety & panic attacks.

I changed Dr and straight away she changed the anti-depressant I no longer itch outside the normal "oh I want my back scratched cos I love it" reasons. And I agree with you that there are doctors out there who really need to listen to their patients. Most do. But there is always going to be the ones whose ego's are bigger than their patient lists.

I have great respect for the training and long hours doctors put in before they are considered capable of treating patients in the general community (I think they train in hospital cos theres others there if there is an emergency, very sensible). So most go on their experience. There will always be those who go on what they think rather than what they should investigate...just tell your doctor firmly but pleasantly "I'm sorry I don't agree, please give me an anti-histamine to see if this is the only reaction I will get". That way you may be able to keep taking the drug if it is good for your sz.

Cheers
Rhiannon

[waves]

First I want to wish you luck with this new med! But also some comments...

If your doc is a stick in the mud about prescribing... you may simply want to ask him if it is ok for you to take an OTC antihistamine - like Benadryl, to see if it resolves the itching.

Other things can cause itching, besides allergies, so i do think it is worth investigating. if the Benadryl does not resolve it, it might be good to do labs - complete blood workup CBC, electrolytes, liver panel and urinalysis. Want to make sure there isn't something else systemic going on - and if there is to get you off the drug before it becomes dangerous.

My hope is that it a transient reaction. I hope it is not an allergy because it isn't a good idea to stay on Benadryl continuously. But rule out allergy and your labs are clean, then quite possibly this itching could be transient and you will feel ok within a few weeks.

I wish you well with this med... 21 AEDs is a lot to burn... i'm wracking my brain trying to name that many!

((( gentle soothing anti-itchy hugs )))

~ waves ~

[Tattoo2]

I wrote a paper on Vimpat last semester, and it seems to have a different mechanism of stopping seizure activity. There are several actions that take place in transmission of electrical activity that can have an affect on allowing a seizure to develop. Each drug may focus on one or more of those actions. However, in case it does not work and with the statistics being what they are re meds, once one aed fails to stop the seizures copletely there is less than a 15% chance that any AED will ever stop them, please seek out an Epileptologist at a Comprehensive Epilepsy Center and discuss other options. There are other options, and with TLE and being refractory, that may be where you find your new life. Complex patials are the hardest to stop with meds. Tattoo

[kimberly1235]

Originally Posted by Tattoo2

I wrote a paper on Vimpat last semester, and it seems to have a different mechanism of stopping seizure activity. There are several actions that take place in transmission of electrical activity that can have an affect on allowing a seizure to develop. Each drug may focus on one or more of those actions. However, in case it does not work and with the statistics being what they are re meds, once one aed fails to stop the seizures copletely there is less than a 15% chance that any AED will ever stop them, please seek out an Epileptologist at a Comprehensive Epilepsy Center and discuss other options. There are other options, and with TLE and being refractory, that may be where you find your new life. Complex patials are the hardest to stop with meds. Tattoo

I really need to ask you some questions... my mother started this drug at200mg,she also was taking triasonal(prob. wrong spelling)@600 mg,an lyrica @200mg..she took for only 2 months....She committed suicide,and she was never suicidal,in the happiest time of her life....She had epilepsy for 28+years,had brain surgery 1989,(i dont know exactly what kind except it was the part removed right behind ear)I think she tried just about every sz med on market, ...... so do you know what the the suicide rate or warnings for it is....I'm just trying tofind out some info...I keep trying to talk to nuerologists trying to find answers,and they are so tight lipped,i guess they are afraid o lawsuits...I'm not wanting any money just want to keep this from happening to someone else...I realize everyone responds diff. to meds. but I can't just sit here knowing this med is very dangerous some people out there

any info would be greatly appreciated........thank you for your time

[Tattoo2]

First I am so sorry for your loss. I am not aware of any statistics re suicidality and the AEDs. Each med comes with it's own adverse reactions discovered during trials. Vimpat has been used in the UK much longer than in the US and is too new for that info to be known I think. I do know with the AEDs and with other meds like antidepressants, it is always suggested to watch for signs of suicidality because no one really knows how a med will affect a person. Those around the patient will reconize differences in behavior and emotions first I would think; changes in sleep patterns, appetite, energy, outlook such as apathy, no desire etc. Also you mentioned several meds that she was on. Lots of meds and too much can cause seizures too. Not only does each med have its own effects The combination of the drugs has concomitant effects as well. I wish she had gone to an epileptologist at a Comprehensive Center since she had had surgery and was still having seizures on so many meds. Again I am sorry for your loss. Tattoo

Originally Posted by kimberly1235

I really need to ask you some questions... my mother started this drug at200mg,she also was taking triasonal(prob. wrong spelling)@600 mg,an lyrica @200mg..she took for only 2 months....She committed suicide,and she was never suicidal,in the happiest time of her life....She had epilepsy for 28+years,had brain surgery 1989,(i dont know exactly what kind except it was the part removed right behind ear)I think she tried just about every sz med on market, ...... so do you know what the the suicide rate or warnings for it is....I'm just trying tofind out some info...I keep trying to talk to nuerologists trying to find answers,and they are so tight lipped,i guess they are afraid o lawsuits...I'm not wanting any money just want to keep this from happening to someone else...I realize everyone responds diff. to meds. but I can't just sit here knowing this med is very dangerous some people out there

any info would be greatly appreciated........thank you for your time

[lor]

Kimberly, I'm so sorry for your loss. I was just reading about vimpat on drugdigest.com and one of the side effects is "suicidal thoughts or change in mood".

I started taking vimpat five months ago. I have had 7 seizures. It's not perfect but better. However I hope the bit of double vision I just had is due to Evista, which I started taking for bones. I am quiting Evista. With Vimpat 100mg in the morn & 100mg at night was a bit too much & made me dizzy. So I started cutting my pills in half taking 50mg at morn, 50mg in afternoon then 100mg at night. Since that worked, my Dr liked it & gave me 50mg pills so I don't have to split them.

roybean88, Weight loss is not one of the side effects. I wish it was.