Click this link to read a post I like on the clusterheadaches.com message board...

wgardens

CH.com Newbie

Offline

I Love CH.com!

Posts: 14
Myrtle Beach, SC
Gender: male

VIMPAT works!!
Jan 6^th, 2010 at 8:54pm

for anyone who can afford this new drug - I went from 5 attacks a day, down to two, and then ZERO (had to work up to a 200mg a day dose). Unfortunately my sample pack is gone - and at $400/month i can't afford the medicine (no insurance) so its back to verapamil.. but please try this drug (used for epilepsy) if your doctor will prescribe it. Its as good as gold (actually better - since gold doesn't help my clusters...

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

lorac CH.com Old Timer Offline Imagine Posts: 433 Tennessee Gender:	Re: VIMPAT works!! Reply #1 - Jan 6^th, 2010 at 8:59pm Never heard of this drug, but I had a Dr tell me once that epilepsy drugs would help ...But I would be really careful with it. Some kinds of epilepsy drugs should never be taken if you don't have epilepsy, or they could give you seizures god knows we have enought to deal with. eh!
Back to top	IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: VIMPAT works!! Reply #2 - Jan 6^th, 2010 at 9:16pm VIMPAT works for me!! Testimonials should always be qualified. Otherwise it sounds like you're selling something.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: VIMPAT works!! Reply #3 - Jan 6^th, 2010 at 9:25pm Topamax is also an epilepsy drug.
Back to top	You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do IP Logged

wgardens

CH.com Newbie

Offline

I Love CH.com!

Posts: 14
Myrtle Beach, SC
Gender: male

Re: VIMPAT works!!
Reply #4 - Jan 6^th, 2010 at 9:40pm

Brew wrote on Jan 6^th, 2010 at 9:16pm:

VIMPAT works for me!!

Testimonials should always be qualified. Otherwise it sounds like you're selling something.

OK - I'm sorry.. for ME. I had stumbled across this board during my last episode (Jan-Mar 09). During that time I went through the usual round of drugs my neurologist prescribes for me. Botox injection, Depakote, Verapamil, some kind of steroid & Zomig for onsets. I have no insurance and these bouts break my spirits and bank account.. I'm self employed - and trying to get any work in a day when I'm going through 5-6 rounds a day - if I'm not burdened with shadows in between then I'm just wiped out.. so hard to earn a living at all while I watch my bank account drain. I'm in a position where I'm drug tested regularly, so anything not prescribed or illegal just is out of the question as well. But last round I did hit on the idea that inexpensive nitrous Oxide might help ease the pain during an attack - since some dentists used that for pain.. it did in fact help a great deal - I actually found myself sitting down during my attacks! (instead of pacing around screaming and kicking at everything in sight)

Anyway, when my attacks came back just in time for Christmas, my doc had me try a sample pack of Vimpat. It has been the ONLY thing that I took and immediately noticed a difference. 30-40 k8-9 5X/day down to 5-10 min k2-3 3X the next. After 7 days on the 50mg 2X/day the attacks moved up in severity, but that is when the sample pack went to 100mg 2X/day - NOTHING! Not a shadow, not an attack.. the very next day. Ran out of the drug on Friday and got just enough filled to get me through Monday. Yesterday I went back up to three attacks, so I know the cycle had not just ended on it's own.

So, yes - I should qualify - worked for me! the 80mg verapamil I'm still own does help the severity, and will have to do until the end of this bout. Hopefully by next go round, FDA will have approved this for the treatment of clusters.

I only posted this here so that maybe someone else will find the same relief.

Michael

Back to top

IP Logged

wgardens CH.com Newbie Offline I Love CH.com! Posts: 14 Myrtle Beach, SC Gender:	Re: VIMPAT works!! Reply #5 - Jan 6^th, 2010 at 9:43pm FramCire wrote on Jan 6^th, 2010 at 9:25pm: Topamax is also an epilepsy drug. also, according to the website for the drug, there is a difference between it and other epileptic treatments Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	IP Logged

Bob P

CH.com Hall of Famer

Offline

Shut up Bob!

Posts: 4573
Clio,California
Gender: male

Re: VIMPAT works!!
Reply #6 - Jan 7^th, 2010 at 6:28am

Quote:

But last round I did hit on the idea that inexpensive nitrous Oxide might help ease the pain during an attack - since some dentists used that for pain.. it did in fact help a great deal - I actually found myself sitting down during my attacks! (instead of pacing around screaming and kicking at everything in sight)

Since N2O reduces O2 supply to the brain, doesn't this trigger cluster attacks?

Back to top

Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!"

IP Logged

Kilowatt3

CH.com Old Timer

Offline

1952 Jag

Posts: 300
Lake Charles, Louisiana - USA
Gender: male

Re: VIMPAT works!!
Reply #7 - Jan 7^th, 2010 at 7:52am

Bob P wrote on Jan 7^th, 2010 at 6:28am:

Since N2O reduces O2 supply to the brain, doesn't this trigger cluster attacks?

Bob,

I'd be real surprised if N2O reduces the O2 supply to the brain. The opposite seems more likely. The oxygen atom in an N2O molecule is very loosely bound, so it comes off very easily. That's why N2O can "supercharge" (so to speak) a car engine - provides it with extra oxygen.

All that aside - I'd be wondering what happens to the leftover nitrogen. Now if it hangs around and forms some kind of nitrates or nitrites, THEN I'd be worrying about it triggering a CH!

Regards,
Jim

Back to top

Regards,
Jim
SW Louisiana

If "that which does not kill me, makes me stronger", then how come I always feel like $hit after every near-death experience?

IP Logged

BarbaraD

CH.com Alumnus

Offline

Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: VIMPAT works!!
Reply #8 - Jan 7^th, 2010 at 8:14am

w,
I know the feeling you have about the drug. It's how I felt when I got topamax. It worked and I thought everyone should be on it. But it proved to work for me and not many others. That was 10 years ago. It still works for me and not many others.

Hope you can manage to get the drug (I spent a fortune on topamax, but it was worth every penny to keep from hurting). Finally after all these years there's a generic and it does just fine. But the$400 a month sounds familiar.

Wishing you PF days...

BD Kiss

Back to top

What don't kill ya, Makes ya stronger!

IP Logged

Click Here to visit the CH.com Facebook page!

wgardens

CH.com Newbie

Offline

I Love CH.com!

Posts: 14
Myrtle Beach, SC
Gender: male

Re: VIMPAT works!!
Reply #9 - Jan 7^th, 2010 at 10:42am

I don't know if the nitrous triggers an attack, since I only use it when I'm going through one. Even though the Vimpat is gone, the 80mg 3X/day Verapamil I'm still taking seems to be holding back the duration and intensity, so I'm not using it now.

I read everything I could find on nitrous, and from what I can understand, it is completely out of your body in two hours. And the only health risk would come from doing 200+ whip-its a weeks over a period of time, then you would lose B12 and need supplements... but that's WAY more than I used for the attacks. I ordered a case of 4 boxes, 24 canisters each online for about $30. When I felt an attack coming on, I would head to the garage and start doing the nitrous using a whip cream dispenser. I have done these before, log ago when I was in school, and the euphoric feeling is not the same when the attack is on. I still felt the pain, and my eye was still teary - but I was no longer yelling out obscenities or having to pace around. I could actually sit down for the duration of the attack. Again, this worked for me. Also, there IS a difference in the quality of the nitrous - the brand I picked up at my local adult bookstore was nowhere near as effective as the brand I ordered online, and it cost $25/box. I will point out to that nitrous is not used up in your system, so exhaling into a large baloon can help conserve some of it and cut down on the cost. I probably only needed 5-7 whip-its for each attack (except for the more expensive/less effective brand, which I used half the box for each attack.. not good)

Back to top

IP Logged

wgardens

CH.com Newbie

Offline

I Love CH.com!

Posts: 14
Myrtle Beach, SC
Gender: male

Re: VIMPAT works!!
Reply #10 - Jan 7^th, 2010 at 10:45am

forgot to mention that I DID discuss this with my neurologist. He said he was not able to prescribe nitrous for me because apparently its illegal to use it this way (even though it is a medical purpose) but he is the one who said it would be completely out of my system in 2 hours... and he said if it helps, by all means do it (I think he's as frustrated as me at my body's lack of response to all the medicines he has prescribed

Back to top

IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: VIMPAT works!! Reply #11 - Jan 7^th, 2010 at 11:26pm Have you tried Oxygen??
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: VIMPAT works!! Reply #12 - Jan 8^th, 2010 at 7:22am A lot of the articles I'm reading say that N2O can cause hypoxia. It should be administered along with sufficient O2. It only oxidises at elevated temperatures.
Back to top	Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!" IP Logged

KERRY CH.com Newbie Offline I Love CH.com! Posts: 1 Gender:	Re: VIMPAT works!! Reply #13 - Jan 8^th, 2010 at 8:05am TOPOMAX DOES WORK, THE SIDE EFFECTS WHILE TAKING THE MEDS WERE AWFUL BUT TO WIEGH IT AGAINST THE PAIN IS WORTH IT. I HAVE SUFFERED FOR 28 YEARS NOW AND HAVE TAKEN EVERYTHING UNDER THE SUN EXCEPT DEATH, (YOU UNDERSTAND) AND TOPOMAX WORKSSSSS
Back to top	IP Logged

wgardens CH.com Newbie Offline I Love CH.com! Posts: 14 Myrtle Beach, SC Gender:	Re: VIMPAT works!! Reply #14 - Jan 8^th, 2010 at 9:34am Skyhawk5 wrote on Jan 7^th, 2010 at 11:26pm: Have you tried Oxygen?? I have not asked for a prescription, but I understand it is very expensive. BTW - today makes day three of PF.This cycle should have lasted until March.. but may be gone
Back to top	IP Logged

Marc

Ex Member

Gender:

Re: VIMPAT works!!
Reply #15 - Jan 8^th, 2010 at 9:35am

wgardens wrote on Jan 8^th, 2010 at 9:34am:

Skyhawk5 wrote on Jan 7^th, 2010 at 11:26pm:

Have you tried Oxygen??

I have not asked for a prescription, but I understand it is very expensive.

BTW - today makes day three of PF.This cycle should have lasted until March.. but may be gone

Seems to me that O2 would be your first line of defense to abort attacks. Oxygen therapy has long been proven to be safe and highly effective for the majority of CH sufferers.

I use welding O2 - super cheap, reliable and readily available all over town in any quantity I want.

Marc

Back to top

« Last Edit: Jan 8^th, 2010 at 11:33am by Marc »

IP Logged

Potter

CH.com Alumnus

Offline

Team MOOSE DROOL Stinky
Stuff on a Hook Prostaff

Posts: 3600
Blgs.Mt.
Gender: male

Re: VIMPAT works!!
Reply #16 - Jan 8^th, 2010 at 11:17am

wgardens wrote on Jan 8^th, 2010 at 9:34am:

Skyhawk5 wrote on Jan 7^th, 2010 at 11:26pm:

Have you tried Oxygen??

I have not asked for a prescription, but I understand it is very expensive.

BTW - today makes day three of PF.This cycle should have lasted until March.. but may be gone

You obviously haven't done your homework. Oxygen is cheap..........and safe.

Potter

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: VIMPAT works!! Reply #17 - Jan 8^th, 2010 at 11:21am wgardens wrote on Jan 8^th, 2010 at 9:34am: I have not asked for a prescription, but I understand it is very INexpensive. BTW - today makes day three of PF.This cycle should have lasted until March.. but may be gone There, fixed it for you
Back to top	When the PAIN starts, I FIGHT back! Rivea Corymbosa seeds were my KO punch, now D3 is the front runner! IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: VIMPAT works!!
Reply #18 - Jan 8^th, 2010 at 6:16pm

Oxygen is very inexpensive if used properly. With a high enough flow you don't use as much as you would with a lower flow rate, AND it kills the hit in much less time. Check out the oxygen info tab to the left. Then talk to your Neuro about 25lpm or more. Welders oxygen is less expensive than paying the regular rate for medical O2, but if you will talk with your supplier and tell them you are paying cash they will probably cut you a much better rate. B4 insurance I was paying less than 25% of the regular rate for cash.

Also, for an inexpensive (relatively) preventative look into Kudzu. I replaced Verapamil and Lithium (both at high dosages) with Kudzu that I purchase online and have as good a result and I don't have the side effects I had with the prescriptions.

Back to top

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

IP Logged

wgardens

CH.com Newbie

Offline

I Love CH.com!

Posts: 14
Myrtle Beach, SC
Gender: male

Re: VIMPAT works!!
Reply #19 - Jan 8^th, 2010 at 11:20pm

Thanks everyone! I don't know if it was the Vimpat, the Verapamil - or just leaving the beer alone completely for the past two weeks, but my normal three month bout seems to have ended in only a month. Its the shortest spell I've had in at least 4 years. Before the next one is due, I will certainly see if I can get some O2 on hand (but I will also re-up on he Vimpat, as it seems to be preventive rather than abortive)

Back to top

IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: VIMPAT works!! Reply #20 - Jan 8^th, 2010 at 11:29pm You're able to drink alcohol while in cycle?
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

wgardens CH.com Newbie Offline I Love CH.com! Posts: 14 Myrtle Beach, SC Gender:	Re: VIMPAT works!! Reply #21 - Jan 9^th, 2010 at 12:50am It doesn't seem to have an effect on me - well, at least that's what I thought. They would come on whether I was drinking or not. But like I said, I don't know WHY they went away so fast this time, only that they did - so maybe I should have put down the beer as soon as the attacks started.
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!