A Hopeful Epileptic

Hello All

I am so glad I have come across this forum as I am in desperate need of help right now. To start things off, in 2001, I suffered my first seizure(non-drug related) actually, all MRI's and EEG's have come back normal, but have been having some partials recently(may be due to high anxiety and stress but not sure). My Neurologist has switched my epileptic medications recently and they don't seem to be working that well. Again, it's a stressful time in my life, probably as stressed as I've ever been in my 31 years. I am moving to Chicago to be with my girlfriend in 3 days, my dad has been fighting cancer and I am leaving him, and I have been on Xanax for the last 5 years. I started at .25 mg 3x/daily but that didn't work. I sought it out myself(Stupid) as I had been experiencing tinnitus(ringing in the ears) and had heard it was the miracle drug to alleviate/mask it. I had been on Lorazepam for a brief time, Amitriptyline, and landed myself on generic Xanax(alprazolam). I have been going through absolute turmoil trying to get off this stuff and no one seems to get it, especially my girlfriend whom I've given up my great job, family, and everything for. She is a wonderful person, don't get me wrong, but her lack of understanding is something I fear will only make this withdrawal process even harder. She sees anxiety as simply "nervousness" and it is far from that. To get back to the dosage, I started at .25 3x daily, but quickly moved to .5 twice daily. There have been good days and bad. I have gone from points of 3mg a day, to days of only having 1.5(but those days are pretty rough to say the least) it's like a day of many different withdrawal symptoms and with my history of seizures I can't tell if my new epileptic meds aren't working, or if it's withdrawal, stress, anxiety, or a cocktail of everything mixed into one. I made the mistake of reaching out for Xanax and now I am paying the ultimate cost at the worst possible time. I gave up my job so I have no insurance. My neurologist tried putting me on Effexor, but the epilepsy meds made me lose 27 lbs in 3 weeks and I was 150 to start with. I had finally regained my appetite and once I started the Effexor the appetite was gone again, and I could NOT lose any more weight. I am currently taking Alprazolam xr .5 (which seems to do nothing) in the morning) and taking a .5 regular in the evening along with another .5 xr. This is not getting me by at all. I feel to be comfortable and to stop the daily partial seizures I need to be taking at least 2mg a day. The XR's take a "slight" edge off, but I cannot focus on anything, am lashing out at everyone, and am afraid it will be impossible to land a job. Please help!

Hi travisg, welcome to BenzoBuddies

I'm sorry you're having such a bad time right now. Do you have a doctor working with you regarding the benzo and would you like to taper off? It may be that your system is becoming tolerant of the xanax. It's best to get a doctor on board with you on this. Let us know if you have any questions, we're here for you.

Star

Hi Travisg,

Welcome to BB 

I am really sorry to hear about the pickle you now find yourself in.  Benzos have a nasty habit of doing that to us poor souls.

In light of your history with regards to seizures, it would be a good idea if you were worked closely with a doctor during your taper.  It would be advisable for you to take things extremely slowly when tackling your taper, and you might possibly even consider do a cross-over taper to a longer acting benzo, like Valium.  Of course, how you decide to do things is entirely up to you.  I would urge you to read the Ashton Manual and decide the best way for you to move forward towards benzo freedom.  But, as I have already stated, please use caution due to your medical history.

Hello Fellow "Buddies"

I do agree, with my history of seizures, it is best that I work closely with a doctor during my taper, however, I'm not sure exactly what approach to take. I am actually considering switching seizure medications due to cost as I have no insurance currently and the new meds my neurologist put me on are not working that well. I am considering a switch to Tegretol, which is MUCH cheaper and also is used(from what I've read) in tapering to assist in the seizure side effect from Xanax withdrawals. This would however be in cases of a quick taper which I am weary of. But if ever the time is right, it may be now, as I currently have no job and nothing on the immediate horizon. My neuro kept me on Xanax although I wanted off due to being on it for 5+ years, but he said "once on a benzo, always on a benzo". To me this speaks loudly TIME FOR ANOTHER NEUROLOGIST!

I do have am appointment scheduled in Chicago(where I am moving in 2 days) but that appt isn't until Sept 27th and I don't feel I can wait that long. The neurologist is VERY reputable in both neurological conditions as well as psychiatry so I am hoping I get bumped up on the waiting list. I have an appointment on Monday with a Holistic counselor that I hope will help ease my mind a bit and help get me steered in the right direction.

I do have questions though. I am currently taking the both the XR form and the regular form of Xanax. Which is easier to get off of? The XR seems to do nothing for me, I'm sure it's because it's longer lasting and jsut releases slower into the system. My other question. I have heard both pros and cons of Klonopin. It IS another Benzo and I really dont want to replace one problem with another. Would Valium be better? I am going to have a very busy social schedule over the next couple months and would like to be able to function and have a decent time and not be a zombie as I meet my girlfriend's friends in a new city. That gives me anxiety just thinking about it. Has anyone tried any supplements to help the process at all? I am very careful as to what I take as many supps affect the way my anti seiz meds work. Any help to these questions would be great! Thanks guys!

Travis

Travis,

Welcoming you to BenzoBuddies,

I, too am Epileptic, and have a history of seizures.

You will find plenty of support here.

Sigma.

PS- Are you taking anything for your seizures?

I forget if you said you were or not in chat.

Sigma.

Hi Sigma

Yes, I am currently taking Zonegran. 200mg/twice daily. However, it does not seem to be working the best and hasn't since he started me on it 2 months ago. I was on Dilantin (same dosage) for 10 years, but it seemed to be wearing off and this particular Neurologist is HIGHLY against that particular medication, for a variety of reasons. I have searched and searched recently for a new med to try as I am kinda in limbo right now with my upcoming move and without a neuro that I really trust. Zonegran is a med that is labeled to be taken "with other meds to control seizures" but he has me on it alone and it is not doing the job as I am having "motor-partials" daily, which could also be anxiety/stress induced or a combo, I'm not sure. I thought about trying Tegretol as it is supposed to cover ALL types of seizures and is pretty affordable as I currently am without insurance. Zonegran runs me about $500/month compared to $90 for Dilantin and Teg would be $80.

How about you? What have you come across as far as medications that have been helpful? Have you had some of the same issues with partials and trying to tell the difference between withdrawal symptoms and seizures? How have you been as far as social life and work on the Valium? That is one thing that I fear about taking a strong sedative when it comes to tapering. I know it's a beast that I'm going to have to conquer here soon, but am just looking for some insight, especially from someone who has suffered from epilepsy. You seem to be a godsend seriously! I actually just hopped on to message you and ask you a few questions and saw that you had asked me the very one that I was going to ask you.

Oh, and sorry if I'm a bit wordy! just trying to get the proverbial ball rolling before I get the tires heading East towards Chicago. It's gonna be a long road ahead!!

Travis

Hi Sigma

Yes, I am currently taking Zonegran. 200mg/twice daily. However, it does not seem to be working the best and hasn't since he started me on it 2 months ago. I was on Dilantin (same dosage) for 10 years, but it seemed to be wearing off and this particular Neurologist is HIGHLY against that particular medication, for a variety of reasons. I have searched and searched recently for a new med to try as I am kinda in limbo right now with my upcoming move and without a neuro that I really trust. Zonegran is a med that is labeled to be taken "with other meds to control seizures" but he has me on it alone and it is not doing the job as I am having "motor-partials" daily, which could also be anxiety/stress induced or a combo, I'm not sure. I thought about trying Tegretol as it is supposed to cover ALL types of seizures and is pretty affordable as I currently am without insurance. Zonegran runs me about $500/month compared to $90 for Dilantin and Teg would be $80.

How about you? What have you come across as far as medications that have been helpful? Have you had some of the same issues with partials and trying to tell the difference between withdrawal symptoms and seizures? How have you been as far as social life and work on the Valium? That is one thing that I fear about taking a strong sedative when it comes to tapering. I know it's a beast that I'm going to have to conquer here soon, but am just looking for some insight, especially from someone who has suffered from epilepsy. You seem to be a godsend seriously! I actually just hopped on to message you and ask you a few questions and saw that you had asked me the very one that I was going to ask you.

Oh, and sorry if I'm a bit wordy! just trying to get the proverbial ball rolling before I get the tires heading East towards Chicago. It's gonna be a long road ahead!!

Travis

Yes, I am currently taking Zonegran. 200mg/twice daily. However, it does not seem to be working the best and hasn't since he started me on it 2 months ago.

Oh, the Zonegran. I have been on that before along with Tegretol.. it didn't work for me either. I also got a yellow rash on my stomach from it.

I was on Dilantin (same dosage) for 10 years, but it seemed to be wearing off and this particular Neurologist is HIGHLY against that particular medication, for a variety of reasons.

I don't know if I have ever been on Dilantin or not. Pamster here, a very nice Admin. was talking about it, well her friend was on it. I am prescribed Depakote

ER 500mg tabs. I have taken Depakote before, it helped. I'm thinking of asking for Dilantin. The Depakote increases the effects of Valium. I have researched it. Also I have a prescription for Topamax and L-Carnitine  from my Neuro.

I am having "motor-partials" daily, which could also be anxiety/stress induced or a combo

I have Complex Partial Seizures, not daily.. I do have Absent Seizures daily. I also have Hypnotic Jerks at night, (Myoclonic). I have not found anything to stop this. Well, Klonopin did for a while, maybe 2 - 3 years, but was also on it for Anxiety, now on Valium.. plus Valium helps Epilepsy better than Klonopin to some degree I was told.

Stress does cause me to force think and it builds up this electrical energy inside my head.

Zonegran runs me about $500/month compared to $90 for Dilantin and Teg would be $80.

I don't pay for my medications, but there's one new AE out on the market, Vimpat, it supposed to control seizures really well. I have not tried it, yet.

My Neuro recommended it, but she said try the Depakote ER along with the L-Carnitine first.

How about you? What have you come across as far as medications that have been helpful?

Well, Klonopin along with Depakote helped my seizures for a long time, but the Kpins are out of the picture now.

Topamax helped somewhat.. it prevented Aura's.

When I was a kiddo, I had seizures every evening.. I took Phenobarbital and something else. That helped.

Have you had some of the same issues with partials and trying to tell the difference between withdrawal symptoms and seizures?

Yes I certainly have. I can relate to this.

One side of my body will tremor horribly at times, and so on..

If I don't get a hold of these partial seizures soon, I will have a Tonic Clonic, because the Partial Seizures are an aura themselves.

Withdrawal, some of it I do get confused with seizures, especially Absent Seizures.

How have you been as far as social life and work on the Valium?

Somewhat, yes I have.

I was on Kpin before Valium.. I c/o to 45mg of Valium. I find the lower I taper the Valium, my threshold becomes weaker.

This is why I'm in the midst of finding a good Anti-Epileptic.

Nah, you're not wordy.

I know the anxiety of withdrawal and worrying about a seizure at the same time.

I hope you luck on your travel to Chicago.

PS- as far as the Epilepsy.. I'm in the middle of med decisions myself.

You're not alone here!

Sigma.

Sigma

Thank you for the info! I have heard about the rash that can be caused by Tegretol as well. I am still in the midst of searching out the right anti-epileptic med myself. I seem to be lucky to have gone 10 years on Dilantin without any tonic-clonics, but had a near miss one day which is why they made the switch to Zonegran. Everyone is different and every med works differently for everyone so it's a game of trial and error until on sticks. I'm hoping to get the right med before starting the taper to hopefully prevent some of the more serious withdrawal symptoms(I've heard that Teg is actually pretty popular with some docs when it comes to the tapering system, but that seems to be used for a quicker taper than most people would like). It seems some AE meds have the same cycle of tolerance build up that has landed so many of us on this forum (but over MUCH longer time and not through abuse of any kind whatsoever) and some of us with epileptic issues just have to switch meds every 10 years or so.  Wish you well in your search! Keep me posted as to what you find! Wish you the very best! 

Travis