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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Medication Help! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1363222765 Message started by bradish on Mar 13th, 2013 at 8:59pm |
Title: Medication Help! Post by bradish on Mar 13th, 2013 at 8:59pm
I have had clusters for 14 years and was properly diagnosed about 5 years ago. When I was first diagnosed I tried several meds and found that Verapamil was what worked for me. Started at 240mg and that's all it would take. I would be fine med free for a few months and then the clusters would be back. The last cluster I was in I started at 240mg and was good for a few weeks and then went to 360mg for 7 months. I thought that I would just stay on the Verapamil and I wouldn't get the clusters anymore. I was wrong. In December, the clusters returned and I went up to 480mg and can't seem to get them to leave. Today the doc prescribed me with Nortriptyline along with the 480mg. Please help! I need relief and not sure what else to try.
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Title: Re: Medication Help! Post by Wayne on Mar 13th, 2013 at 9:34pm
I feel for you mate, sorry you're having a shabby time. There is nothing worse than when a reliable med stops working. For my part I have found that Verapamil loses its effectiveness after prolonged usage, for me this is about 18 months of continuous use. there are two ways of addressing this that I have found effective. The first, if you are in the middle of a savage cycle and don't want to abandon your prevent, is to add Lithium carbonate to your Verapamil. This is known here as the Chronic cocktail and has been a silver bullet for many. The other option is to wean yourself off verapamil and stay off it for a while, somewhere between 2 and 4 weeks seems to work. You will notice that when you start back on the Verapamil it will be just as effective as it was previously and you'll be fine for the next 18 months. The disadvantage here is that, obviously, you are prevent free during the time that you need it most so will need a work around like O2 to get you through. FYI I think that this is a fairly common problem with chronics who take Verapamil for extended periods. You do need to consult with your doctor before doing anything though. Hope this helps.
Wayne |
Title: Re: Medication Help! Post by bradish on Mar 14th, 2013 at 5:47am
Thank you for the suggestions. I have been talking to my doctor and he usually goes with whatever I need to do. I think I made the mistake by not going off the Verapamil in my last cycle. I was at 360mg then and now I am in a new cycle and went to 480mg. This is my highest that I have ever been. Last night I started the nortriptyline with the Verapamil and still had 2. That is usually my norm. I did get one before I went to bed which is unusual. I use Imitrex injections to abort the pain. I am only allowed 2 a night so I woke at 3:55am to beat the 4:15am. So far it worked. I have gone many many years with no treatment as doctors couldn't figure out what was wrong with me. I cannot get through these anymore without an injection. The pain is unbearable. I will talk to my doc about the vitamin regimen. This site is a life savor for me. Thanks all!
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Title: Re: Medication Help! Post by bradish on Mar 14th, 2013 at 5:55pm
I have tried oxygen several times and it didn't work for me. Does anyone use Nortriptyline with Verapamil for a preventative? This is what the doc prescribed and I am praying this works. We leave for vacation next week and I really want to enjoy myself. I got one at 1pm this afternoon and slammed a Red Bull and that worked.
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Title: Re: Medication Help! Post by bradish on Mar 14th, 2013 at 6:00pm
I know you guys are not doctors but you can speak from experience. Would it be safe if my doctor had me up my dosage of Verapamil? I wonder if that would knock them up. I know I have to go off of this when this cluster is over. Just a thought I had but not sure if its safe.
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Title: Re: Medication Help! Post by Guiseppi on Mar 14th, 2013 at 6:12pm
When I have a period of time I CAN'T get hit...a short vacation, daughters wedding, I go on a short prednisone taper. For me pred is a 100% block from beasty. Not a med you wanna use long term as it's really hard on the system but a great short term fix to get caught back up on rest or for a vacation like you're planning.
As to upping the verapamil dosing, that requires a really close watch on your BP so oit doesn't get dangerously low. Definitely something you work with the doc on. I haven't heard opf verap with that med, usually it's verapamil and lithium, something we used to call the "chronic cocktail" used when either by itself didn't help. Joe |
Title: Re: Medication Help! Post by Guiseppi on Mar 14th, 2013 at 6:13pm
And just for comparison some go as high as 960 mg a day on verapamil to get relief.
Joe |
Title: Re: Medication Help! Post by Brew on Mar 14th, 2013 at 8:04pm |
Title: Re: Medication Help! Post by bradish on Mar 14th, 2013 at 9:25pm
Yes I have used oxygen the proper way. Sometimes I would sit half an hour with it until I couldn't stand the pain. I have tried it with different cycles hoping someday it will work.
As for the prednisone, I took that years ago when I was first diagnosed and it only worked for a day or two. I wonder if I could take that with my Verapamil to give it a try. If this nortriptyline doesn't kick in by Monday, I may ask the doc to switch to prednisone. Just to get some relief! |
Title: Re: Medication Help! Post by Brew on Mar 14th, 2013 at 11:35pm bradish wrote on Mar 14th, 2013 at 9:25pm:
With a non-rebreather mask? At flow rates of 25 lpm and up? Hyperventilating? |
Title: Re: Medication Help! Post by bradish on Mar 15th, 2013 at 7:26am
I used a non re-breather mask at 15. Had 3 last night and used red bull for one of them. I am calling the doc again today to get a script for oxygen. I will try it again. I wasn't hyperventilating. I was breathing normal. That's what I was told. Am I supposed to hyperventilate?
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Title: Re: Medication Help! Post by Guiseppi on Mar 15th, 2013 at 7:52am
With oxygen it's a trial and error thing. For many, the best way is to start out with heavy hyper-ventilating breaths for the first few minutes...untiul the old lips are really tingling, then back off as the pain level goes down. I do the exhale, cough to completely empty the lungs, then a deep inhale, and hold for 30-45 seconds. I've also found chugging a sugar free red bull while I abort with the 02, speeds the abort and pushes the come backer attack several hours down the road. Might be worth a shot, I know Lance has posted the same breathing and red bull technique and has had good results with it.
Joe |
Title: Re: Medication Help! Post by wimsey1 on Mar 15th, 2013 at 8:43am Quote:
Yes! Once again, no offense meant bradish, we hear "I've tried O2 and it didn't work" when what is meant is I've tried O2 as described by (whomever in the health care industry) and it didn't work. At 15lpm very few of us find O2 to be as startling an abortive as we claim. Hyperventilation is the key, and flow rates that support quick hyperventilation is imperative. That means 25lpm minimum. For me, using the demand flow valve mask pushing up to 60lpm was incredible. blessings. lance |
Title: Re: Medication Help! Post by bradish on Mar 15th, 2013 at 12:38pm
Where do you get your oxygen? How much? I don't have insurance and have to drive an hour an half to get oxygen. Its quite pricey from Apria so just looking for some options. One tank will last me 37 minutes...
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Title: Re: Medication Help! Post by Brew on Mar 15th, 2013 at 1:58pm
Don't volunteer any information.
If they ask, you're either learning how to weld or you have a live bait tank with some expensive bait that you'd like to keep alive. |
Title: Re: Medication Help! Post by bradish on Mar 23rd, 2013 at 6:38pm
Update: I am on vacation with no headaches! I started oxygen and the vitamin regimen on the same day. The oxygen really did help. I took myself off the nortripteline which I think made my headaches worse. While on that I got them all thru the day and night. It was horrible. I stopped taking that, used only 2mg of imitrex at a time when needed, used redbull, and oxygen to abort. Not at the same time of course but switched it up and a few days later no headaches. Not sure but I really think this vitamin thing really helps. Thank you all for the suggestions!
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Title: Re: Medication Help! Post by Mike NZ on Mar 23rd, 2013 at 8:29pm
No headaches is awesome, even better on vacation too so you get to really enjoy it.
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Title: Re: Medication Help! Post by CH Brain on Mar 24th, 2013 at 5:14am
Bradish,
Glad O2 is working for you. If you have to go back to a preventive and are considering Verapamil again, I have a contribution for you. When Verapamil failed for me, my clinical pharmacologist & headache wizard suggested a little known cousin of Verapamil, called Diltiazem (Cardizem, Dilacor, Tiazac). If I remember correctly, the theory was - if we can hold cranial blood vessels in a permanent state of Dilation, they won't be able to Dilate any further - no CH. It also has some preventive attributes in cerebral vasospasm. From memory Diltiazem relaxed walls of arteries, veins and capillaries, making them less susceptible to spontaneous constriction. (This is not to say you will not experience hypothalamic/trigeminal activation and still have a CH attack, but it may reduce severity) I still can't post links, so google/wiki Diltiazem, perhaps it will help you. The stuff gave me a permanent 9/10 Migraine, after about 3 months of this, I decided it was an unreasonable trade-off in quality of life and willingly ditched the drug. Watch out for interaction with other drugs. With any ramp-up in dosage of a Calcium channel blocker, regular ECGs and close monitoring are required. Finding the "Goldilocks" dose between efficacy and toxicity is always a challenge and should be supervised by a headache specialist. Just an idea. I am not a Doctor. Cheers, Ben. |
Title: Re: Medication Help! Post by Guiseppi on Mar 24th, 2013 at 9:01am
There is definitely someting to the D-3 regimen, too many people like me, have been pain free for too long, with no other changes in their lifestyle/medication regimen, for it to be coincidence. I don't think we can bang the drum loudly enough on getting EVERYONE to at least give it a shot. So happy it's working for you.
Joe |
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