Was wondering if you guys stayed on the Veramipil all year round or only when you r in your cycle. Also finally got an appointment with John Hopkins. For jan. 12th. They r getting me in as an urgent case. Otherwise I would have had to wait until June.
Oh by e way... Moving to Phoenix Arizona in July. Anybody from around there? Gonna have to find a whole new doctor.

Hey, Bonnie Lee. Congratulations on getting your appointment with JH. Those of us who are chronics, either stay on meds that are working (like verapamil) year round or switch to new meds when the old ones stop working. Episodics have reported coming down from their meds when they are certain the cycle has ended, or dropping down to maintenance dose levels. In any case, the recommendation is to do so slowly, and under a docs supervision. Blessings. lance

What Lance said!

I'm episodic. After 2 weeks completely pain free, I start to slowly wean off my prevent, (lithium) from 1200 mg a day to zero. About the time I hit 600 mg, I'll know if beasty is really gone or not. Then I'm med free until my next cycle.

I say med free, but I stay on the Batch Regimen permanently now. (See the posting in medications section "123 pain free days and I think I know why." A daily vitamin anti inflammatory regimen that's bringing varying degrees of relief to many on the board.)

But also as Lance said, work closely with your doc as all of these meds should be gone on and off under a doctors care. Good luck!

Joe

hello,

Med FREE!!!!!!!!

Hips then hands...
Coach Bill

coach_bill wrote on Dec 28^th, 2011 at 8:00pm:

hello, Med FREE!!!!!!!! Hips then hands... Coach Bill

Care to elaborate?

im episodic and have been on verapamil for past 6 years. i tried weaning off a couple times many years ago and started to get hit again so just decided to stay on as i tolerate the verapamil fairly well. i just started a cycle 2 weeks ago with 1-2 attacks per night. i went off verapamil in order to try busting with rc seeds. since then i started having 3-4 attacks per night and increasing to as many as 10/day. busting did not work and i went right back on verapamil. i didnt think the verapamil was working but it definitely does reduce the amount of attacks i have when in cycle. i take 480mg/day usually and have reduced to 360mg/day when in remission.

Bonnie lee wrote on Dec 27^th, 2011 at 7:34pm:

Was wondering if you guys stayed on the Veramipil all year round or only when you r in your cycle. Also finally got an appointment with John Hopkins. For jan. 12th. They r getting me in as an urgent case. Otherwise I would have had to wait until June. Oh by e way... Moving to Phoenix Arizona in July. Anybody from around there? Gonna have to find a whole new doctor.

Hi Bonnie Lee,
I am a Chronic CH'er and I am on 120 mg Verapamil a day every day neuro's "orders" to my gp, plus my neuro put me on Topiramate at 300 mg. (100 mg 3 times a day). I do have high blood pressure, got that about 5 yrs ago when I turned 40. (whoopee. as if turning 40 weren't fun enough!  ;) That's why my neuro had my gp change my hbp med to the verapamil. The combo of the two meds, every day, if I can remember the afternoon topiramate, are what seems to keep the CH in check better, at least they're not month-long "screamers" where I live on hydrocodone every 2 to 3 hours and end in another trip to the ER.  ;D

Hope this helps!
Michelle

Well I tried taking myself off the Veramipil 3 days ago. Not a wonderful idea on my part. The second day the devil showed up. Needless to say I am back on them and am fine now.
Oh my appt. with John Hopkins was changed to feb. 8th because they accidental gave my appt to someone else. Oh well. At least I don't have to wait til June.

Bonnie:  For whatever it's worth - everything that I have read about Verap -- and my neuro's emphatic instruction-- is to come off it only under a doctor's care.  As I understand it there are potentially very serious withdrawal issues that need to be carefully managed and monitored.  I'm not crazy about the day-to-day side effects, but they beat the heck out of a KIP-10, and when the time comes to stop taking, I'll follow my docs orders.

Hi there I have been on verapamil for over a year. 120mg per day. I was on double that for a while. It works for me and has reduced twice daily CH to maybe 2 per month for which I take cafergot at the onset. I have tried reducing the dosage a few times with minimal success. Best I can do is reduce to 5 tablets per week but it is dodgy and I always have cafergot on hand. stocked in house, van etc. I am slowly becoming resigned to verapamil being permanent for me. No real side effects apart from possible minor depression. On the plus side at age 57 it is probably keeping my BP down to normal levels as well. I am in NZ and had to find verapamil myself through google and this site. Doctors were quite useless here. she just said if that is what you want you can have it after I suggested it to her.

Bonnie,
My husband is on 160 mg. of verapamil (BID).  He's not had a cycle for can't remember how long, but when he tried to wean off, he started getting major shadows.  Doc says that he can stay on it as long as we wants to.

carolyn

I'm new on this forum. Reading what I could in the last few hours, I'm surprised to see what dosage of Verapamil I'm taking compared to others.

When I first met with my neurologist a few years back, she had increased the dosage slowly up to what I now take: 760 mg a day.

Does anyone else take that much?

Two years ago, or is it 3? hmmmm... she had me also take lithium on top of this, but I don't remember the dosage.

I'm seeing her tomorrow and will get the details.

Some will notice I made many posts on this forum in just a few hours. That is because I'm fearing going to sleep right now (the monster seems to be smiling at me) and I have to kill time somehow, and also I suddenly discover that I can actually share with people knowing how I feel, and I get good info.

I had noticed coffee helps me, but I would have never even thought about energy drinks... that's an awful taste though, I tasted that stuff only once... Taurine helps too? okayyyy, I'll go buy some tomorrow

Thanks for all this information and for the chance to share

Precision, I'm episodic, so I completely stop all medications after the 4,5, 6 to 8 weeks of the episode is through. In the last 12-15 years or so, I've been having episodes either 12-14 months apart, either up to 25-26 months apart. Earlier in my CH life, the episodes were often closer, like 6-8 months

head404;
760 mg a day of Verapamil is not uncommon, in fact it seems most people find relief at the 640 mg and above level. I think the lower doses you see here are 'year round' maintenance doses.

Oh thanks for that info. Miscalculated, that's 720 mg of verapamil I'm taking. As of yesterday, I added lithium 300mg and that will rise up to 900mg.

Since I spent most of my CH life (27 years) without any medication at all, I must say I'm not used to all this medication and my heart beat down to 50.

I'm feeling terrible today. Still having crisis every night but I have now also the Zomig nasal spray which I used last night.

ohhhh that's a lot of medication  :-?

I spent several years on the "chronic cocktail" of verapamil and lithium (480mg verapamil + 900mg lithium). At the time it sure beat the alternative. Now I can say that THAT much medication put me into a semi-zombie state.

My doctor was surprised when I mentioned some of the doses  quoted here. She would be reluctant to prescribe over 240mg per day. I am on 120mg per day and it is working quite well but maybe if the CH persisted she (the doc) would have to rethink it. I switched to verapamil originally because I was exceeding the recommended max dosage of cafergot regularly.

My regular neuro was also reluctant to exceed the 240mg/day dose despite the research. It was up to the headache specialist I saw to do so. I am now at 640mg/day, and when I have tried to cut back, found the CHs returned dramatically. I am not pain free, but I am managing which is more than I could say before the high verapamil levels. Blessings. lance

My neuro told me the other day one can take up to 960 mg of verapamil, making sure the heart beat doesn't go lower than 50 bpm. But she usually stops at 720, adding lithium then

540mg here. Three 180mg er caps. If I start to shadow I will add a fourth 180mg for a few days. I have two scripts, one for 180mg and one for 240mg so I can mix and match according to the weather/seasons etc...
Like quite a few people, if I get down below 360 I start to get hit.

Cronic for 30 years. Taking lithium and verapamil twice a day for 15 years. Tried to stop but ch out of control. I am becoming immune and need to find allternitive drugs.

You sound like a friend of mine on the board. He was on the lithium/verap combo...we call it the "chronic cocktail" :).....even it stopped working. He went to:

Clusterbusters.com

Went the mushroom route. He's a middle aged executive, not the type you'd think would go this route. He's been almost completely pain free since and hasn't looked back. The people on that board will answer every question you have about alternative treatments.

Joe

There is also a message board for clusterbusters:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Give 'em a look-see.

I'm posting this on this thread as I feel my decision could be of interest to someone.
I stopped verapamil and lithium for I couldn't cope anymore with the side effects. I'm back with the beast, of course. Just killed a kip 6-7 with ice and a Monster drink. I'm floating in a strange shadowy state now. It's nothing easy for sure as I fear going back to bed (I won't), but it's nothing new to me. I know I can face that. As soon as the meds started to clear from my body, I felt much, much better. Maybe the dosage was too much, I don't know, but the feeling was horrible. For the records, in 32 years, it was only the 4th episode I was on verapamil, the other 3 were similar. Too much, I rather the beast. At least I know her well.
Have to wait a few days before busting.
find me at clusterbusters.com

Wishing you luck with the busting Head, it's been a life changer for many.

Joe

Graemel wrote on Jan 19^th, 2012 at 5:41am:

My doctor was surprised when I mentioned some of the doses  quoted here. She would be reluctant to prescribe over 240mg per day. I am on 120mg per day and it is working quite well but maybe if the CH persisted she (the doc) would have to rethink it. I switched to verapamil originally because I was exceeding the recommended max dosage of cafergot regularly.

If anybody has issues with an ignorant doctor reluctant prescribing Verapamil for CH's, go read the "Verapamil Dosage" thread under the Medications/Treatments board.  I have outlined how to get high dose Verapamil prescribed. 

If you still have difficulties, PM me, as I have plenty of recent experience resulting in success.

EDIT TO SUGGEST this thread be moved to the proper board-Medications/Treatments/Therapies.

-Gregg in Las Vegas

Having said I was ok now I have had 3 CH episodes in a week. I have doubled the dose to 240mg per day without success so am also taking 1 cafergot tablet per day which is not good. I am unsure what has brought this on after 10 months CH free.

Unfortunately it seems to be the nature of the beast. Do keep in mind that 240mg/day is at the low end of the range we tend to need. It is disappointing, I know, but we are in the CH Lotto here, and the stakes just keep going up. Or so it seems. Blessings. lance

as many of you, i have been on the verapamil/lithium combo for many years, sometimes it does stop working and when you need something else, my dr. has gave me neurontin as a third medication. Always seems to stop the beast in its tracks.