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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> topomax
        
(Message started by: court88 on Apr 25^th, 2005, 2:02pm)

Title: topomax
Post by court88 on Apr 25^th, 2005, 2:02pm

I'm 30 year old female and developed ch's 5 years ago...I've recently been put on topamax..started out at 25 mg/day and it actually worked for 10 days, but now they are back. going back to doctor today..probably need to up my dose. I keep hearing people take about verapamil?? has anyone had good luck with it. My headaches are miserable...as I'm sure everyone's are. I feel like a hypochondriac talking to friends/family..noone understsands. Anyway, is there a med anyone recommends for when you get a ch in the evening that will help you sleep? I have xanax, but it makes me so tired the next day. Have ambien too, but not sure my doc will let me take it as often as I would like :) HELP.

Title: Re: topomax
Post by kimmeesue on Apr 25^th, 2005, 3:17pm

I have chronic CH and have been on Topamax since last fall. My dsage is up to 150 mg twice daily and it has helped but I am by no means pain free. A lot of people refer to it as dopamax because of memory problems and such which are very real. I'm willing to put up with it as nothing else has helped at all. I, and many others, also use melatonin which is available OTC at night to help with sleep and avoid the night hits. I have also added recently a new Rx sleep aid called Lunesta which so far is working well. I have battled insomnia for years and had no luck with Ambian.
This a wonderful place to find information and support. I had sufferrred for years and just recently discovered this site. The people are lifesavers.
Sorry you are sufferring but glad you are here.
Kim

Title: Re: topomax
Post by sandie99 on Apr 25^th, 2005, 3:19pm

Court, welcome here! :)

I know very well your situation. I've had ch since 2001. Topamax didn't help me at all! I got 11 attacks a day, all kip 7-9, which was terrible.

For the time being I'm taking verapamil, 600mg/day, and it has changed my life for the better. My HAs have turned into milder and I get 2 or 3 a day, which is wonderful. And I've had PF days! :)

You can always count on that you can find understanding folks here. None of my pals and family members truly understand what ch is all about although I've told them countless times and my mum has been to see a neuro with me.

Best wishes & PFdays and nights,
Sandie

Title: Re: topomax
Post by E-Double on Apr 25^th, 2005, 4:10pm

I was on Topadumbass briefly in January/February......For me it was a nightmare....Some people respond well. I could not tolerate the side effects.....I would rather be in extreme pain than not have my wits....Just my personal opinion.

This is a great resource to know like the back of your hand...print it out and give it to him

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

You could also try Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Educate your doc and/or find a CH familiar doc!

Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be a very helpful.
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: topomax
Post by Chillrmn1 on Apr 25^th, 2005, 4:37pm

regarding xanax & ambien - I used to take these in hopes of getting a better nights sleep but found they increased frequency of attacks for me. After a couple days without taking, the frequency would drop. Also, one of the possible side effects listed for both medications are "headaches". I find I do better with the melatonin.

Title: Re: topomax
Post by court88 on Apr 25^th, 2005, 6:31pm

So, it sounds like I should up my topamax. it does make me tired and kind of dopey, but anything is better than a headache. I'm going to the doctor today and praying she will give me more ambien....does excedrin migraine help anyone? It helps me quite a bit for about 5 hours or more...
I will try melatonin. Does it give you a hangover feeling in the morning?? ARe you groggy?

Title: Re: topomax
Post by BarbaraD on Apr 25^th, 2005, 7:42pm

Most of the time they up the dosage after a week or 2. My neuro started me on 75 and then upped it to 150. I took the whole dosage at night before bed and didn't have all the side effects others have had - well a little memory loss, but I'm OLD so everyone just took it as age. It stopped my headaches (except for some breakthrus occasionally) for several years, but then it just quit working and the side effects creeped up on me. Now I'm back to nothing working again.

Try Melatonin at night -- it helps some.

Hugs BD

Title: Re: topomax
Post by lionsound on Apr 25^th, 2005, 8:29pm

on 04/25/05 at 18:31:27, court88 wrote:

I will try melatonin. Does it give you a hangover feeling in the morning?? ARe you groggy?

as with anything else your mileage may vary. It does make some people groggy.

Melatonin did NOT make ME groggy and I found it worked better than Ambien, Trazadone, Remeron(all tried for sleep).

Like E-double said a few posts up....make sure you ask your Doc first. :) Something you can also ask your doc about: Sometimes you can adjust the times of the meds you are already taking to help you out.

be well,
lionsound

Title: Re: topomax
Post by Judge_Smails on Apr 26^th, 2005, 3:51pm

I was taking 100mg Topamax and it seemed to be help in limiting my attacks (1 per day as oppossed to 3/4) - although my cycle is only 4 weeks so I can't speak to the long term effectiveness. I also was taking melatonin and it worked wonders helping me sleep through the night. I think I only got 1 or 2 night time hits in the 3 weeks I was taking it.

Good luck.

Title: Re: topomax
Post by Bob P on Apr 27^th, 2005, 9:38am

Tried topomax last cluster. Didn't have any bad side effects but it also didn't help the attacks.

Verapamil is the front line preventative as far as the ch experts are concerned. You do need to take it at much higher doses than the blood pressure dose that doctors are used to. Some doctors have people up as high as 1080mg/day. For me, when I get around 360-480 constipation becomes a real problem side effect.

Title: Re: topomax
Post by Gonzo1991 on Apr 28^th, 2005, 7:12pm

I take 150 on the topomax and I don't get the ill effects as some people do. It dosn't take my headaches away but it lessons them to some degree. They slowly up my dosage every two weeks until I started taking 3pills of the 25 in the am and 3pills 25 in the pm and the only ill effect I had suffered was tinglies in my toes that went away after two days.

Now on to melatonin God awful stuff for me. Made my cluster come oh harder than ever before, I was unable to sleep for 4 days i felt like a zombie, So I am afraid to try any other sleep aids.

Talk to your doc and Hopefully they can get you going on the right track, It seems like there is alot of trial and error on some docs and I always seem to get them. just my luck I guess.

of course I aways get the men doc who think that a woman who comes in with a headache is a simple mirgaine silly docs. Of course I am not bitter and i do not mean any offence. Just been run thru the ringer for the past few months :D

Hopefully you will find some pain free days.

Title: Re: topomax
Post by Packagepro5 on Apr 28^th, 2005, 10:35pm

Has anyone tried Relpax.

Title: Re: topomax
Post by court88 on Apr 29^th, 2005, 4:16pm

never tried relpax. I've increased my topamax and it really is helping my head aches..frequency that is. I'm extra tired, tingling toes and fingers and sodas taste bad, BUT anything is better than a head ache!

Title: Re: topomax
Post by Lori on Apr 30^th, 2005, 12:33am

I used topomax (100mg)and verapamil (360mg) my last cycle 3 yrs ago. Together they worked and i on;y had some breakthroughs, but they were tolerable compared to the normal torture. The side effects from dopomax were pretty bad though.

This time I was already on lamictal (another anti seizure drug like topomax but without the side effects) and when the cycle started it wasn't quite as hard and fast as in the past. So maybe the lamictal made some difference. I then added my verapamil again and for the first time took melentonin at night and that has helped!! No headaches so far since I started that. Only when I forgot to take it 2 nights I got hit. I have oxygen and that stopped the headache.

So that is my experience with topomax and anti seizure drugs.

Title: Re: topomax
Post by Gator on Apr 30^th, 2005, 12:49am

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Re: topomax
« Reply #11 on: 04/28/05 at 21:35:44 » Quote Quote Modify Modify
Has anyone tried Relpax.

Okay, how in the hell can I be reading this post and the poster's number of posts is zero?

Anyways - Tried Relpax. It, like most pills, takes too long to start to work to be effective. Plus I really didn't like how it made me feel. Zomig Nasal Spray was the first truly effective abortive med I tried - worked great! Pain free within 5 - 10 minutes. When insurance company changes forced me to try Imitrex injections, I found them to work even faster - usually 5 - 7 minutes. Continued insurance problems have led me to start using a lot of 20mg Imitrex Nasal Sprays. Doesn't have the rapid ch knockout punch that the trex injections or the Zomig NS have, but I generally find at least partial and sometimes total relief in about 15 minutes or so.

Of course, your mileage may vary.

Title: Re: topomax
Post by court88 on May 2^nd, 2005, 6:09pm

When people talk about" severe side effects from topamax."..what are these severe side effects? I am tired, have numbness in my hands and feet and am a little forgetfull, but that is it. Is there more to come??

Title: Re: topomax
Post by E-Double on May 2^nd, 2005, 7:58pm

on 05/02/05 at 18:09:55, court88 wrote:

on 01/21/05 at 17:54:58, E-Double wrote:

I could not tolerate it!!

I literally sat with my clients/students and could not run procedures that I developed!
I was having brain farts like you could believe and I need my wits!!!

I'm off this crap! Called the doc!

Wishing you luck!

Let us know!

Eric

edited to add everything does taste like ASS!!

I pretty much lost my mind on it.... slipped very quick from forgetfulness to depression and everything tasted like garbage.

Some people can hack it, I couldn't deal with not being able to think....I'd rather be in pain.

Good luck

Title: Re: topomax
Post by Gator on May 4^th, 2005, 1:45am

on 05/02/05 at 18:09:55, court88 wrote:

My wife and I were talking the other day about different meds I have taken. When the subject of Topomax came up, she told me things I don't remember her saying before and definitely don't remember living through. Apparently, I was worse off than even I thought. While on Dope-a-max I was a total idiot. Dumber than a bag of hammers. The wife said she was embarrassed to go anywhere with me. I would say things I thought were funny that were just plain stupid or nonsensical. I would just sit there and stare off into space for long periods of time totally unaware that I was doing it. She took my car keys away as I was totally dangerous behind the wheel. My kids refused to get in a vehicle if I was driving. Basically, put a helmet on my head and lead me around with a leash time.

Besides these wonderful side effects, it made my attacks much worse and I had terribly vivid nightmares.

Jane has said that no matter what a doctor says, I will never be allowed to take Topamax again. I agree.

Title: Re: topomax
Post by BigRick on May 6^th, 2005, 9:01pm

on 05/04/05 at 01:45:37, Gator wrote:

Sounds like the experience I had 15 years ago on Lithium. :P

Title: Re: topomax
Post by Bionic_Daddy on May 6^th, 2005, 9:29pm

Hello Court88, I took 400mg. daily of Topamax. Helped slow the severe HA's but caused me severe stomach problems. I was told Topamax is trying to be approved for weight loss, it should be. I lost 40lbs. in 2 monthes. Verapimil worked the best for my Chronic HA's. Try O2 & Stadal NS ( For The Severe Ones ).
Good Luck, Bionic Daddy.

Title: Re: topomax
Post by BobG on May 7^th, 2005, 8:34am

There is a thread about topomax over in the Supporter's Corner section.

Scroll down to the title 'I feel so alone' posted by WifeofCHSuffer

Title: Re: topomax
Post by WhoAmI on May 7^th, 2005, 4:16pm

Hi - When I first started the Topamax I had all the side effects, tingling, nausea, stupidity, dizziness. After about three weeks they went away. Started at 25 mg, then 50, 75 to 100 now, with 100 of verapamil daily, both at bedtime. Since the Topamax makes me drowsy, no need for a sleep aid. Started in MArch no real headaches since. If i feel one trying to start, I go for the oxygen and it quickly abates.

I guess I'm a Topamax success story.