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mariarod18

Boyfriend's clusters are terrible. help!

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Hi guys! 

I've read through some of the posts but I'm having a hard time understanding where we should start. Some background.... my boyfriend gets really bad cluster headaches. Today he got three, one of them lasting 2+ hours. It seems to me he usually gets them during season changes. Regardless, I want to start getting him some treatment to see if anything works. Where do we start? Do I get him to ask his doctor to prescribe oxygen? Should he go straight to medicine? If so, which ones? I can't tell which medicines are the most effective and have the highest likelihood of helping him. 

Thank you for your support and help and let me know if you need any additional information. 

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Welcome mariarod18! We love our supporters. :)

Has he seen a headache specialist and been diagnosed as having CH? Did he have a scan done - likely a MRI -  to rule out other potential issues? This is an important step.

Cycles starting around seasonal changes are pretty common. Kind of a hallmark of CH.

O2: Yes!!! It is the best abortive out there. Please get him to insist on O2. He needs a flow rate of at least 15LPM and a non-rebreather mask. These are his best tools to abort with. Push and push for O2!!!

Next, I would suggest that you look into the D3 regimen. It is just OTC vitamins that have helped many lower their pain and frequency or even go pain free.

You will find info on both in the Clusterbuster Files section of the board. D3 he can get started immediately. O2 is his best shot a aborts.

Has he tried and Energy Shot or Drink at the very beginning of a hit? They can really help!!!

The most commonly prescribed medicine is Verapamil. He wants the short acting variety, not the extended relief type. For some reason it works better for us. Likely he will need 360mg/day  and possibly more. Low doses do not often work for CH. Some take as much as 960mg/day. However, he needs to keep an eye on his blood pressure as verap lowers it. Normally the verap is ramped up over a period of time. The other common med is Prednisone. Just for 5- 10 days until the verap builds up in his system. Not to be taken long term as it will destroy hips!! These two medications are the best and most commonly prescribed pharma for CH.

if possible, you may want to go with him to the doctor. You can back up his symptoms and help remember the questions he wants answered and so forth. Being brain fried from CH can make some things difficult. Every patient needs an advocate in my book.

He is lucky to have you looking out for him!!

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+++ to spiny's post (as always).  Just a couple of notes.  Oxygen is an abortive. It stops attacks.  It works when properly set up and it has no side effects. Another commonly prescribed abortive is sumatriptan, which comes in many forms -- pills, nasal spray, and injections.  The injections work best; the pills generally don't work at all.  Triptans have some side effects, including often causing rebound attacks and extending cycles.  So they should be used only for breakout attacks that aren't controlled by oxygen and energy drinks.

Verapamil is a preventive: it helps stop attacks, or make them less severe.  Side effects, of course.  It is strongly recommended that it be monitored.  The D3 regimen is also a preventive; in general, the only side effect is feeling healthier. 

Melatonin at night, starting at around 9mg and working up to a dosage that helps (sometimes in the 20-30 mg range).

As you look around the board, you will see person after person talking about the great effects of "busting."  Be sure to read about busting in the ClusterBuster Files section.

Most doctors know roughly half as much as spiny knows, if they even know that much.  You really have to go in there prepared, and then really insist, particularly regarding oxygen.

And be sure to get back to us as you and he move forward!!!

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