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jebstuart888

Help needed!!!!

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Hello, i am new to the world of CH. i am 36 years old and got my first "cycle" about 5 weeks ago. I have been getting about 4-5 attacks a day and see no relief in site. I take Imitrex as an abortive which works wonderfully, gets rid of the attack within 30 mins. Insurance only gives me 9 pills a month which is crazy as i go through that in 3 days. I need help "breaking the cycle" as i am slowly losing my mind, job and personal life. I know i am new to this and have a lot to learn but i can use any advice, tips, support or anything else that might give me some hope. i am going down a dark hole right now and it would be nice to know that there is a light at the end of this tunnel. Thanks in advance. 

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Tips on helping abort the cluster.

First thing you will want to start working on today is getting a script from your doctor for high flow oxygen at 15-25lps with a non rebreather mask.

things you can "do at home" are down a 5hr energy drink at the first sign of the pain.

drink ice water with a straw pointed at the roof of your mouth on the cluster side to kind of freeze it out.

put your feet in hot water, as hot as you can take it.

down strong coffee, this is kind of like the 5hr energy drink thing.

chew on fresh ginger.

pushups, jumping jacks or some other kind of exercise sometimes helps. 

just a quick few things I hear of that have helped people in the past. 

I have tried just about all and sometimes they help and some times they do not. Every attack is different and you will need to try a few things for some attacks before something helps it. But the one thing that works best for me is the pure oxygen. between that and 5hr energy drinks I do not use triptans (Imitrex) but maybe once a month if things get real bad. 

Also look into getting Imitrex shots, they will abort in about 5 minutes. the pills take much longer. 

 

Take your time and read up on this site and a tun of help will come your way. 

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The only thing I can add is ask for zembrace. It is half strength imitrex injections that allow you to take 4 a day instead of 2 at full strength. My insurance used to cover 16 per month. Still a drop in the bucket but every little bit helped. Now I prevent my CHs with mushrooms and have kept them at bay for 6 months now. I am chronic not episodic. If I was you I’d look into RC seeds to bust your cycle. Many people here have had good luck and there is no real wait time like with growing mushrooms. 

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Great advice from F'T' and Freud.  OXYGEN can't be overemphasized.  It's the real lifesaver.  If you can't get a prescription, you can do as many do and create your own system using welding oxygen.

For most people with CH who have done the vitamin D3 regimen, it has been effective at stopping cycles, reducing severity of attacks, and preventing future cycles (though not right away -- it can take a few weeks, although for a small number of people it's faster).  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Often, a good doctor (and I would say emphatically that you do not have one, given what was prescribed to you) might use a steroid taper (prednisone, usually). In some cases, it will stop a cycle, but in most cases it gives pain relief for a few days before the cycle comes back as you are tapering off the steroid. You can use those few days to jump start the D3 regimen, or to use the commonly prescribed preventive, verapamil, which takes time to get into your system enough to be effective.

Regarding "busting" with shrooms or seeds (or L S D), read the numbered files in the ClusterBuster Files section of the board.  You might find other things that will help you as you read the other files in that section. The "triggers" document, for example, has been helpful to some people.

Also, because CH is often flared up by allergies, even ones you don't know you have, consider taking Benadryl 4 times a day, 25 mg 3 times, and then 50 mg at night.  It's a lot, but it can help.  Some people find that melatonin at night, starting at about 9mg and working up as needed, helps.  Melatonin is an important chemical (hormone??) that is low in people with CH.  NOT recommended to take both Benadryl and melatonin at night.

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Jebstuart888,

IMHO - Energy Drinks!, 100% high flow Oxygen, and Busting. :)  These three are my go to.  

Also - Stay away from known triggers - Alcohol, Chocolate, Fermented Cheeses or Preserved meats.  ANY aged or overripe foods.  Stay far away from these and you should see a noticeable drop in your attacks.

PFW,

J

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Wow I guess I'm lucky. My doctor prescribed prednisone and it's working wonderfully. Coffee actually makes my headaches worse as does any extra caffeine, alcohol & chocolate. Before I got the prescription I did find that melatonin at night did seem to reduce the intensity/frequency but I still needed rexatriptan melty pills for the pain. Once the Prednisone got prescribed they went away. Still on it and will be for another 2 weeks. We'll see what happens after that - mine are episodic though, not chronic.

 

 

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sorry to hear brother. i know your situation all too well. i actually just went back to work after 5 weeks of nothing. the thought of being away from home terrified me. i missed out on a lot, but after 22 years of this i dont mess with the beast. im in my 7th week now and they have subsided dramatically. 4 to 7 a day with 5 being kip 10+, im now down to 1 a day (middle of week 7, kip 2 and just annoying). stay strong and try all alternatives mentioned above. i have an unbelievable amount of respect for all clusterheads. only thing i can add is try to stay as positive as possible while going through them. i take them 1 cluster at a time and always tell myself im that much closer to being out of cycle after each one. its the toughest head game, but i know you can do it. you are in my prayers, God bless.

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