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Cluster Headache Help and Support >> Getting to Know Ya >> CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1309826353 Message started by jchange79 on Jul 4th, 2011 at 8:39pm |
Title: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by jchange79 on Jul 4th, 2011 at 8:39pm
I,ve been taking Verapamil for about two to three years now as a preventive and obviously it is not working or I am taking the wrong dosage (200MG) each morning. I've always had CH but for some reason this season is the worst I'd ever had ,I have oxygen (6 liters) , 100 mg Imitrex (pill form). I am very desperate right now to stop this!! My doctor is booking appointment a month ahead and I am almost at the point of no return...I know Imitrex should not be taken everyday , but I have no other choice I take about two a day and my Insurance doesn't cover some because of monthly expense or something like that.( only five per script. My Family does nopt understand what I go through and sometimes I ask myself WHY ME??? Please all suggestions are welcome I cant take this anymore I want a normal life!! :-/ :-/ :-/ :-/ :'( :'( :'(
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Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by Brew on Jul 4th, 2011 at 8:43pm
200mg of verapamil per day is a pretty low dose. Many don't get relief until they are around 480mg per day, some as high as 720mg or 960mg per day. Talk to your doc about upping your dosage.
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Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by Andy T on Jul 5th, 2011 at 3:59am
Hi Jchange
It strikes me you've just got some top advice. The O2 has to be upped and Imigram tablet, as you must be aware, are absolutely useless, you really need the injections. These are limited to two a day, but can be stretched out and still successful. As for the Verapamil, I'm not really the one to comment, as I had adverse side effects, so don't know what might constitute an ideal dosage. Bottom line though is to get sorted with a top knowlegable neuro, or headache specialist. I really hope you can make use of the advice you're getting and things improve for you. Best of wishes Andrew |
Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by Mike NZ on Jul 5th, 2011 at 4:51am
Hi Jchange
You've got some excellent advice above. I strongly suggest you discuss what has been written with your doctors, especially a headache specialist neurologist as a few simple changes to your treatment should be able to make a massive difference to you. |
Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by wimsey1 on Jul 5th, 2011 at 8:12am
Hi, jchange. Want a normal life, huh? Welcome to the new normal. What you mean is you want a pain free life; or at least, to be free of CHs, and we surely do get that. The good news is you have been given great advice, and chances are, something said already, or yet to be said, will help you cope. You must not give up. Along with advice and support, this site provides hope. Real and tangible hope, because we are all in the same boat as are you. And while we hurt just as often and just as much, we are learning how to attack the beast. You can, too. Read, read and read some more. Take notes. Hie thee to a good headache specialist. Make lists of what you'd like to try, what you have tried, and how that worked out for you. Get busy with your own welfare and I believe you will find relief. Keep us informed, OK? Blessings. lance
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Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by RichardN on Jul 15th, 2011 at 6:59pm
Hi jchange & Welcome Home
Good advice above . . . and you need to take charge of your pain now if your doc is unwilling (many are real freaky about high-flow 02 because they are uninformed), even though last year the American Medical Journal (or Journal of American Medicine?) reported (which I saw on a national news network) that high-flow 02 was effective as abortive for 80% of CH sufferers. Copy info off this board and show it to him. If your insurance won't pay for the 15lpm regulator . . . go to ebay (medical oxygen regulators) and you can find one for about $30 . . . it will look like the 8lpm regulator you have now. You need a non-rebreather mask (the one with the bag) . . . your 02 supplier will have one with a 1 litre bag . . . which will work till you can get an Op2mask (with big green 3 litre bag) . . . a huge improvement and designed for clusterheads. I am slim and able to hyperventilate (with the 3 litre mask) with a 15 litre regulator. For right now, if all you have is the 8 lpm regulator and a nasal canula (nose thingy) . . . try this . . . Up the regulator to 8 lpm, then hold one finger over one of the openings . . . aim the other opening at your mouth and inhale just slightly less than the regulator is putting out . . . which means you're inhaling 100% 02 . . . .start at the first sign of attack. My first script was for 4 lpm and the nose thingy and I was able to abort if used quickly enough . . . this might help get you through til you can get the proper set-up. Re the Verapamil. I had my first PF day (in over a year), after coming here (02), finding out about Verap & 02, about three weeks after starting the Verap when I got to 240 mg a day (had 3 attacks that night, but had the 02 to kill them . . . it was a WONDERFUL day!) Got as high as 480 mg, then settled on a 360mg maintenance dose which reduced the frequency/intensity of attacks. As you up the dosage, many have some problems with constipation (I did), but that's easily remedied with diet change or stool softeners. You may get what we refer to as the Verapamil "buzz" within 20-40 min of taking the Verap . . . tis normal and passes quickly. Verapamil is a BP med, so your doc needs to monitor as you increase the dosage . . . but as mentioned above, many take much higher dosages and often in combination with lithium or other meds. Read, read, read . . . ask any questions you may have. You've found the motherlode of CH info/sharing/caring and the advice you will receive here comes from folks who truly know your pain. Be Safe, PFDANs Richard |
Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by jchange79 on Jul 16th, 2011 at 12:16am
Thanks Richard good info I have recently starrted taking the d3 regimen along with verapamil one of the two I think are causing this pain.
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Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by RichardN on Jul 16th, 2011 at 12:37am
The d3 regimen (which is working for some and not for others . . . we're all different) and the Verapamil (your dose is too low) are preventatives.
You still need to have an abortive and the proper 02 set-up will give you that ability . . . with NO side effects . . . and it's CHEAP even if you have to pay cash. I pay $10 per "E" tank, no deposit, no limit on tanks (I keep 20). Can abort in minutes if used early-on in the attack. We PUSH 02 for a reason . . . it works! Richard |
Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by jchange79 on Jul 16th, 2011 at 11:08pm
Hello Richard I have the small o2 tank and mask with small holes in both sides , but I was wondering since I started this d3 regimen should I stop taking the verapamil, and also hold do you abort when you are at work?
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Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by RichardN on Jul 19th, 2011 at 1:00pm
Ditto what Joe said.
And if you have the rebreather mask, you're NOT getting 100% 02 and you're wasting oxygen (when you exhale). On the standard non-rebreather mask with 1 litre bag (which is what we used before the Op2mask, designed for clusterheads, came out), what we would do is remove the exhale valve from the one side, then tape up the holes on both sides. Allow the bag to fill (with 15 lpm regulator, about 4 1/2 seconds), hold the mask tight to your face and inhale til bag is flat, crack the bottom of the mask for the exhales . . . . currently you're losing 02 on the exhales . . . with the non-rebreather mask, the bag will collect that oxygen, so . . . when you inhale, you not only get the 02 stored in the bag, plus the 15 lpm the reg is giving you. So, till you can order an Op2mask (links on the site), acquire the "standard" non-rebreather mask, tape the holes, inhale til the bag is flat (about 3 seconds), then exhale for about 4 seconds (to allow the bag to fill) . . . this will give you 100% 02 and quicken your abort times. Be Safe, PFDANs Richard |
Title: Re: CAN'T TAKE IT ANYMORE!!!!! HELP PLEASE Post by gezz on Jul 19th, 2011 at 8:07pm
Hi and so sorry to hear your in such a bad way! I Have just come off verapamil after about 4 years- it just didnt work anymore for me though I agree with Brew the dose you are on is very low indeed ,I was taking double that. I now take lithium (Priadel) which so far seems good though I have just finished a cluster period that lasted 3 months and sufferd such agony that I contemplated suicide- it really got that bad! Its thanks to my best mate that I am writing this now who helped me through it .
The cluster period will end dont worry . You said you take Imitrex in the UK we know this as Imigran you can use 2 injections in a 24 hour period and no more as it gets dangerouse though I will be honest and say when things have been really bad I have gone over this, I have also read that using Imitrex to much can make the condition worse All the best and hang on in there! Gezz |
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