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TO CHRIS1331


CHfather
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Chris1331 posted on another thread (see that post at end of this message), but I think a new thread is a good idea, so I'm starting one.

Chris, there are many, many people here who have been through what you're going through, and they're now living normal lives that are relatively pain free, where CH might be an occasional reality but the beast has been greatly diminished in its ferocity.  You've shown great courage.  Now it's time to start getting better.

I'm going to re-post parts of a message I just posted, because it's faster and it contains some essentials.  You can go from there with questions.  You meds do not all sound wise to me (is the imitrex injectable??), but others will comment on that.

Most importantly, it doesn't sound like you have oxygen.  For 90-plus percent of people, a proper oxygen setup, properly used, will stop CH attacks within 15 minutes.  You can read more about oxygen here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- but the main thing is for you to get a prescription for oxygen, or to get it on your own through a welding-supply company.  You need to contact your neuro immediately about this (preferably after reading the file I have linked to).  Since it's Friday, I'd recommend making the call today . . . but we're here to discuss it with you.  Except in very, very rare cases, oxygen therapy for CH has no side effects.

You could also start right now trying something that has helped many, many people with CH, is inexpensive, and uses ingredients that can be found at any decent drug store or place that sells nutritional supplements -- probably in a grocery store.  Take the following every day: 10,000 International Units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness.  Many people start getting significant relief within a few days.  The levels I listed above are the "default" levels--they might wish to adjust according to their tolerance.  These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so.  To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

This D3 approach is almost certainly harmless, but given all your meds maybe you'd want to check with your doctor. It's inexpensive and effective for many people; you really should start it ASAP, in my opinion.

In the short run, you can also try using "energy drinks" at the first sign of a headache.  RedBull and Monster are two popular brands: the main thing is to get plenty of caffeine and taurine, which those drinks contain.  For some people, catching a headache early and chugging down one of these drinks can stop a headache or keep it from getting as bad as it might have.  Lots of folks with CH have success with this.  Again, because of your existing heart-rate issues, it would be wise to check with your doctor about the effects of the caffeine and taurine.

The major anti-CH strategy here, after oxygen, is "busting" with mushrooms, seeds, or other substances.  You can't really start that without "detoxing" from some of your meds (which don't seem to be that helpful, anyway). The oxygen, D3, and energy drinks you can all do without detoxing.  Lives -- including the life of my daughter and of many people here -- have been saved by this method, and by oxygen and D3.  If you want to know more about it, you could read the series of posts by TommyD in the "Clusterbuster files" section of this board, probably beginning here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then going on to other posts of his.

Keep talking to us.  Things are going to get better for you.

ORIGINAL MESSAGE FROM CHRIS1331:

I DON'T KNOW WHAT TO DO!! I now have been up for 48 hours straight with this latest CH. The hospital can do nothing. I am already on 8 different meds just to control them-neurontin,1600mg daily. Depakote 1000 mg daily. The CH's also affect my BP so I'm on propranolol which is also a beta blocker known to help with CH. Nadolol for my BP and chest pains because the CH's give me panick attacks. Xanax and Lexapro for the panic attacks, the neurologist also claims those meds are good for clusters too. And the imitrex which upsets my stomach so they give me phenigren to take for that. Sometimes I just want to give up but my family keeps me going.

 

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Chris, I'm hating hearing about what you're experiencing  :o:(, but glad to see the good advice CHfather is offering.

Like so many others, after 30+ years since the beast first visited me, and a metric tonload of prescriptions over the decades, I have embraced busting as the most effective solution for prevention, and O2 as my first line abortive (I'm also on the D3 regimen now).

I encourage you to seek out O2 and follow through on CHfather's other recommendations ASAP, but let's go ahead and talk drugs too since you're currently on the 'ol cocktail's worth.

Imitrex. If it upsets your stomach, it sounds like you're on pill form. The vast majority of doctors prescribe it this way. The vast majority of doctors are utter a-holes when it comes to CH. Slow acting pill form is for migraine. Fast acting, more effective injection or nasal spray forms are for CH. Meantime, about the only usefulness I've heard of for imitrex pills for CH, is that some CH'ers who have a predictable time an attack will hit take the pill one hour before and can prevent it.

Here's the imitrex tip which outlines how to get 2 to 3 aborts per injector instead of just one, and makes for less expen$e and less side effect risk: http://www.clusterheadaches.com/imitrex.html

We'll be looking forward to when you have O2 as your primary abortive and can reserve imitrex strictly for emergencies if at all.

Neurontin. Some CH'ers swear by it, more swear at it. Personally I found I had to take it up to 2400 mg per day (on a neurologist's advice) to get prevention from it. It prevented about 50% of the attacks, which beat the heck out of 0%, and made it worthwhile for me at the time.

The kind of sleep deprivation you've been experiencing will drive anyone entirely cuckoo. Most of us have considered giving up before finding some significant relief. Don't you even think of that anymore - you've arrived at a place here where you'll find out how to acquire a fearsome but non toxic arsenal for beating this MF-ing beast to a pulp and sending it screaming home to it's mommy. Which is a good, good thing.  :)

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