Author |
Topic: Topamax: Has it ever caused anyone attacks? (Read 738 times) |
|
Sarge
Guest
|
 |
Topamax: Has it ever caused anyone attacks?
« on: Aug 22nd, 2002, 7:47pm » |
 Quote  Modify
 Remove
|
 Hey guys,
I have never posted my situation before but the readers digest version is that I have chronic ch's with what they call an icepick headache variant thrown in for flavor, and the occasional migraine just for fun. The good news is that recently the ch and migraine seems to have been brought under control with sansert. Two weeks ago my doc also started me on topamax in conjunction with the indocin I was already on for the icepick headache (they differ from my normal ch in that they only last about 30-45 seconds, but they're not trigeminalneuragia). Well, about a week ago these icepick headaches started increasing in frequency and duration. What used to be the once a day 30 second 7-8kip, has bcome the ten to twelve a day 45-60 second 10kip. Guys I know that 45 seconds doesn't sound like much to most of us but trust me these things go off the scale compared to my 9-10kip normal cluster attack that lasts 45 minutes. Please let me know if any of you have ever heard of Topamax causing anyone to have attacks, of any sort  I saw the neuro today and he gave me a bottle of lidocaine and a syringe to drip the lidcaine down the back of my nasal passage when I felt an attack coming on, it works a little but the beast still gets through. Has anyone ever tried this before? Sorry this is so long, desperate Sarge.
|
|
 IP Logged |
|
|
|
Georgia
New Board Hall of Famer
If ya don't like my peaches, don't shake my tree.
  
Gender: 
Posts: 514
|
 |
Re: Topamax: Has it ever caused anyone attacks?
« Reply #1 on: Aug 23rd, 2002, 1:21am » |
Quote Modify
|
First off, there is no need to apologize for being thorough in your post. My neuro had me on topamax for a while...it, beyond a shadow of a doubt, increased the number of ch's I had (not to mention it also increased my migraines). The topo also made me very forgetful...I had to stop taking it. I was registered for 18 college credits in the summer session (which basically means I was taking what is considered triple the normal load) and was commuting 4 hours a day to boot. The beast was doing a great job all on his own of making my life hell without the added help of topomax. I know that others have also had some bad reactions to it, as well. I would strongly recommend that you type in "topomax" in the search button on the very top of this screen and/or click on the "archives" button on the left and do a search there. You will find loads more info on it.
As for the lidocaine, I tried that too. It was, in my opinion, a joke. Recent studies have proven it to be no more effective than placebo in treating ha's (I think they did the study on migraines). Again, search it out and you will find more than I could ever tell you!
Have you tried any other preventatives? And what of abortives? Do tell and we will try to help as much as possible. I know the feeling of desperation that is coursing through every vein in your body right now. There is a way to manage your pain. We just need to find it.
Peace and love,
Georgia
|
| « Last Edit: Aug 23rd, 2002, 1:25am by Georgia » |
IP Logged |
la la lala la la.....(its the theme song from the smurfs in case you couldn't tell) Need a smile? Click here: http://users.compaqnet.be/cn174277/Smurfs%20-%20Smurf%20Theme%20Song.mp3
|
|
|
mustang
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 190
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #2 on: Aug 23rd, 2002, 5:18pm » |
Quote Modify
|
Funny { not really} that I found this post. I tried topamax it made my ch worse when I told my old nuro this he got mad and referred me to someone else, thats why I am in the situation I'm in right now waitting till Sept3 for new doc. and without meds since May. Have about 6-10 chs now day and night all on scales of 6 and up. They have just out of control.
Mustang
|
|
IP Logged |
|
|
|
Sarge
Guest
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #3 on: Aug 24th, 2002, 8:47am » |
Quote Modify
Remove
|
Hey guys,
The neuro blew me off when I tried to mention that Topomax might be causing me to have more attacks, he just kept right on talking as if I hadn't even said anything. So I am going to stop taking them myself. He did give me what I feel is a good diagnosis finally for these "icepick" headaches, they are what is known as cluster-tic syndrome. It is basically the pain level and location of trigeminal neuralgia with the patern and regularity of clusters. What a joy. He also gave me a med that seems to have some affect on them, it's Trileptal (Oxcarbazepine). It works well but it doesn't last real long, so I was up at midnight waiting for the clock to go past 23 Aug so I could get another dose, sounds silly I know. Well thanks for the input Georgia and Mustang. Sarge. 
|
|
IP Logged |
|
|
|
mustang
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 190
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #4 on: Aug 24th, 2002, 9:07am » |
Quote Modify
|
Sarge, notice that you are from Fl. wonder if we had the same doc.
|
|
IP Logged |
|
|
|
Troxie
Guest
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #5 on: Aug 24th, 2002, 4:11pm » |
Quote Modify
Remove
|
Sarge,
I was diagnosed with ice pick headaches over 4 yrs. ago. I'm presently taking a combination of Indocin and Topamax and having good luck with this. I have occasional slight "flareups" that are triggered by stress, hormones and being overheated I believe.
Can you please describe your ice picks to me? Do they occur in the same location on your head and please describe the pain....Thanks....
|
|
IP Logged |
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
Gender:
Posts: 3090
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #6 on: Aug 26th, 2002, 11:15am » |
Quote Modify
|
I didn't notice any problem at 100 or 200mg but when I got up to 400mg I noticed a deffinete change in my ha frequency and severity. I called my pharmacist and was told that ha are not listed as a side effect for topamax. I asked my dr and he told me that it was not the topamax causing it. I didn't believe him and quit taking it. My ha severity lessened and so did the number of ha. I believe ya!
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
Sarge
Guest
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #7 on: Aug 28th, 2002, 6:39am » |
Quote Modify
Remove
|
Heys guys, 
Well the Trileptal I just started taking, got me a free trip to the emergency room and a day at the hospital. Trileptal is in the same family as Tegretol and it leeches or depletes the sodium from your body, well the normal human functions at 135-145 (I forget the unit of measurement) and when they took my blood 15 hours after my last dose, my sodium level was 125. Which I found out later could kill you, comforting isn't it. Needless to say no more wonder drug. I'm taking neurontin and it works almost, but not quite.
Mustang,
I am seeing a doc on Eglin Air Force Base, so we are probably not seeing the same quack unless your getting the same "quality care" from the United States government.
Troxie,
The attacks I get now have a name, Custer-tic Syndrome (a.k.a., ice pick headaches have now been diagnosed and identified). I get a no warning or physical signs prior to the onset. An attack will start with a series of three or four sudden electric-shock ice picks to the eyeball, and then in an instant it hits like a laser through my left eye that travels on through the left side of my brain. This lasts about thirty seconds to two minutes. Afterwards the area around my eye and temple tingles for about ten minutes and I can feel where this "thing" tore through my brain for about five to ten minutes. They start out milder in the morning at about a 4-5 kip and by about five or six in the evening I am getting full-blown 9-10 kip's. Without medications I get these all day long every fifteen minutes, it's horrendous. I was using Indocin and it actually did help and then it just quit, for no apparent reason. 
|
|
IP Logged |
|
|
|
clavers
New Board Veteran
I love YaBB 1G - SP1!
Posts: 106
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #8 on: Aug 28th, 2002, 8:17am » |
Quote Modify
|
I was on topamax for several months for my chronic CH. First, it made me completely insane for three days, I'm not kidding, I mean insane. Then I lost my short term memory and my sense of taste. In spite of all of this, It did not help my CH in the least. This is the worst drug I ever took.
|
|
IP Logged |
|
|
|
mustang
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 190
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #9 on: Aug 28th, 2002, 4:38pm » |
Quote Modify
|
What amazes me this is what my nuro called a miracle drug. Ya, right it' a miracle that I lived through the ch's it produced.
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender: 
Posts: 603
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #10 on: Sep 11th, 2002, 6:38am » |
Quote Modify
|
Tried topomax just recently. Didn't help the CH and the side effects were bizarre - when driving, it felt like I was driving in a "vortex" - very scary. Extreme dizziness, general feeling of being "unwell". There were quite a few more sides, but can't remember them, so I guess chalk-up forgetfulness as another big side effect! Glad I'm off it. Now on increased verap and catapres with some improvement. Good luck. Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Mary
New Board Newbie
There is always hope, never lose it !!!!
Gender:
Posts: 3
|
|
Re: Topamax: Has it ever caused anyone attacks?
« Reply #11 on: Sep 22nd, 2002, 2:11am » |
Quote Modify
|
Hi Sarge,
I've been on Topamax for over a year and no attacks here. But I have what is know as Sunct which means I have 40 to 50 small hits aday, and I feel the pain all the time. There is no know medication on the market that helps Sunct. Topamax only lessen the pain for me. Until my major cycle come in Feb through April. Then God help me. I'v only been on 75mg in the morning and 75 mg in the evening, but I'v decided to wean-off since the convention and see how I'll do without medication, and take the 9mg of melatonin per day as suggested at the convention. See where this will lead me. I can only go up...LOL Wishing you Well!!
MaryD
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss