I'm new to this site.  Lots of good info.  I have suffered from cluster headaches since 1993, and get them every 2 years twice a day.  I keep hoping that once they end they will never come back. But once again I just started getting them again last week. Grrrrr.  Maybe one day I will out grow them.  Wishful thinking on my part. One thing that gets ride of my headaches is exercise.  When I feel a headache coming on I get my heart pumping fast, and im breathing heavy. (sometimes real heavy almost gasping)  for about 5-10 minutes, and then its almost like a pop, and the pain goes just as fast as it came.  This seems to work for me, and I find it better than all the crappy medicine I have tried. The only problem is it doesn't shorten the 1-2 months that they last and sometimes I sure don't feel like exercising in the middle of the night!

my name is hayven williams and iam new to all this i have just began having theses headaches about 2 months ago and it has been  terrible i just would like to speak to some folks who have the same problems i have it is starting to wear me down already the e.r visits the not a very nice person doctors that dont believe me and the different meds its been quite a scary ride

wow.
first of all hi my name is rick i am 28 years old male and  ilive in australia. i and my father both have CH, i have had them since i was 17. my father since he was 23 he is now 52 we are both self diagnosed chronic sufferers.
I am repying to you, as this is my fisrt time on the message board, i wish to speak and communicate with other sufferers other than my father. i have been in need of some comfort knowing there are others out there with the same or even worse pain levels than me. i would also love to for this message to be replied to as i am in a current cylcle at its peak... sounds weird but i am writing this with a shadow of one that hit me last night for over 6 hours constant.
My wonderful caring and understanding partner doesnt like me to go on the computer when im in a currnt cycle as she believes anything makes me get them..computer screens, smoking, alcahol. but i just had to to it and sign up and register as a 'Custerhead' and just speaking to someone i know will help me understand that i have more inner strength inside me to deal with the 'whoppers' i have like last night. also just before i finish my post i have tried sumatriptan 25 and it does not work, i currently take no meds for my CH. thanks for your time in reading this
rick.

Hi Xavier - welcome to the board. There's a TON of good information here, you'll be hard-pressed to find anything better than information from the experiences of other CH sufferers!

Imitrex is definately a great tool to abort. So is oxygen used effectively. You mentioned that you had tried that last cycle to no avail. Please review the info we have on this site specific to oxygen relative to high flow, non-rebreather mask. Most people also continue to breath for maybe 5 minutes or so past the abort.

There is a gathering planned in July in Atlanta of fellow CH sufferers and supporters. If you have interest in that please check the info listed under the Meetings & Gatherings page. My husband Guiseppi is a sufferer and meeting other people with CH was life-changing for him in how he could manage and cope with CH. The same is true of me as his supporter.

You've found friends here.

Christy

this is fuk'd I'm trying to talk to somebody and i can't figure out how.  I'm having CH right now help me

First off you might want to repost this under the getting to know you tab as it's likely many more will see it. A bunch of us just got back fro the convention in Atlanta so we haven't been around!

02 might be worth revisiting. Doctors do not understand how we use 02, assuming we're trying to raise our 02 levels...we're not....so they use re breather masks, nasal canulas, low flow rates, all about guarantee failure.

The keys are a Non Re Breather Mask...the optimask by life gas is one of the better ones......a high flow regulator of at LEAST 15 lpm, preferably one that can go to 25. And you must get on it as soon as you feel the attack building.

And I couldn't agree more, headache pain sucks. Hoping you can get relief soon.

Joe

Big Mike wrote on Jul 22^nd, 2010 at 8:10pm:

That's why we're here, Mike, and we'll help you every inch of the way. Welcome aboard.

I guess you could say that I am an Old Newbie.. Husband has clusters, and has been in remission for 10 years.  It was wonderful.  Then, the beast showed up again in the past week, right now every two days early in the morning.  Imitrex works for him, but all that we have right now is out of date. Still works! I only give a small amt to achieve results. So good to have this family for support. You guys are awesome.

hello everyone,

i am new to this site, my name is Kini. I have had CH for about five years. im 23 years old and looking foward to having many conversitations with all of you.

Hey Joe...Looks like KINI is in S.D.   

Hello! My name is ryan i must be mildly retarded cause i cant figure this site out. how to post messages and talk with others?

Hi everyone,
This is my first post and I've got so much to tell I'll probably need to do it over several posts as I'll forget a lot to include in this post.

I've had CH for 28 years. I didn't have it diagnosed correctly until around 10 years ago. After trying several combination's of drugs/therapies I finally got onto the one that works for me. I am very lucky that I am a veteran and get my meds cheap. I had no idea that Imitrex was so expensive!

It was 4 years ago when I finally got this treatment:
Oxygen, Imitrex and lots of water. (4 years ago I only needed to do this twice as I was towards the end of my cycle - more on this later).

Typically, before my current routine, as soon as a headache would come on (wake me out of a deep sleep) I would be one of the small percent who would get nauseous. I'd run to the toilet and vomit. I'd leave all lights off as it would shoot lasers through my brain. Next step, get into the bath tub and put my head under the faucet with as cold as it would get and writhe in pain. If it came during the day I would get a towel drenched and grab a few bags of vegetables out of the freezer. One bag at the base of my skull where it meets the neck and the other over my eye. Then wrap the towel around my head and cry and trash like an epileptic baby. I had a technique that could calm the savage beast but as soon as I stopped it would be back with a vengeance. I would grab the back of my neck and squeeze as tight as I could. Right below the lump that we all know about. If I squeezed it hard enough it would work somewhat, never fully but ANY relief is a god send. Another thing that I would do that I have never heard of anyone do but for some reason it helped me - I would drink two or three shot glasses full of Balsamic vinegar. I don't remember who told me about it or if I just came upon this on my own but it seemed to help. Maybe it was just coincidental but I still did it.

I did the above for many years until I got the Imitrex and only needed to do it twice during that cycle (4 years ago) and I was fine again. I travel a lot and luckily I had not had any episodes while traveling. Then I hit the most horrible time of my life. I was in Bangladesh and got food poisoning. After about 2 weeks of feeling like I was on my deathbed I could feel the telltale signs that the beast was going to attack soon. I only had 2 Imitrex inhalers with me and I was scheduled to be traveling for at least another month, in Pakistan. I recovered from the food poisoning and the CH had not hit yet and I was hoping that the change of weather might keep my CH away. Nope. It hit with such ferocity I prayed for the sweet kiss of death in my sleep, when I could sleep. I had some very slight relief from Valium, hashish and Ritilin. There was no place to buy Imitrex anywhere that I could find. I was getting two massages a day that gave me some very slight relief. Finally my month in Pakistan was over and on a few days of leave in Dubai I was able to find Imitrex inhalers. At this point my headaches were so severe the inhalers did nothing to help. As I travel in so many countries I am blessed with many friends of many professions. I called a friend in Slovakia who is a brain and spine specialist. She called her friends to get advice and they found a clinic that specialized in CH.

At this point money was no object. I'd cut off a foot for some relief. I got on the next series of planes to Slovakia and had an appointment for the same day. What a blessing to have specialists that knew the pain I was in and how to treat me.

First, I got a series of either lidocaine or novocaine shots in several places in the face and neck. Then I got a morphine and herbal infusion. This is where you sit in a chair and have a catheter shoved into your arm with the bag in the air. It took about 20 minutes for the whole bad to get into me. Then I got a 20 minute massage of the shoulders, neck, head and face. I felt a bit dazed from the meds and massage but my dear friend helped me through every step.

I was scheduled for two more visits, one day on and one day off so that the treatment actually took 5 days. The first day after my treatment, I got another CH but it was not nearly as severe. The second day I got two that were horrible and I was losing faith. The third day I got another treatment. Day 4 I got another two CH but very mild. Day 5 I got my last treatment and some meds to take home. I still have one of them but can't find it. The meds were Tramadol 100mg slow release, which was to be taken twice a day, 12 hours apart. The other medicine I don't remember but I have the vial somewhere. It was liquid drops of some sort and I really can't remember what it tasted like. But,,,, I was cured. I mean REALLY CURED! I had 3 full years of ZERO CH! The quality of my life had greatly improved and I thought that this would go on forever.

Sadly, about 1 month ago I felt it creeping up. I thought it was impossible for it to happen again, prayed that it could not happen. Well, I'm finding this forum now so you can guess that it did happen. It's been about two weeks now of 2 or 3 per night. I'm back on the Imitrix, Oxygen and lots of water treatment. I also do the frozen veggies to the head too. It seems that this bout with them is much worse than ever before. Suicidally worse. I'll be seeing my neurologist next week who has agreed to try the novocain/lidocaine shots to my face and neck but won't give me any infusions. I am really hoping this will work. If it doesn't, I am flying to Slovakia. I can in no way afford this but, as anyone of you know, money has absolutely no meaning when you hurt this bad. I will cash in a CD at a loss to come up with the money. I am so exhausted and depressed and hurting that I can barely function through a day. I don't feel I have any other options. I don't think I'm as strong as many of the people I've read about on this forum. I simply CAN NOT go through this again.

There is a lot more to tell but that's probably enough for my introduction. Theories on why this started, illegal drug use (probably not appropriate for this forum), acupuncture, massage, herbs, chiropractic etc.

I'm glad I found this group. I hope I haven't turned anyone off with my rambling on.

Peace

Welcome to the board Ow, a couple of things. I don't understand the treatment that helped you but there are a boatload of things I do not understand. And be careful with the word CURE! Means you'll never have another CH. If you truly have CH, only the pearly gates are a complete CURE! Let me add some weapons to your arsenal while you're in the states.

1: A decent prevent medication. A med you take daily, while in cycle, to reduce the number and intensity of your hits. I use Lithium at 1200 mg a day. You can't tell I'm taking it and after about 10-14 days on it it'll block 60-70% of my attacks. Verapamil is the typical first round prevent, used at levels higher then most docs are used to, as high as 960 mg  a day, many use Topomax. There are some who combine the verapamil and lithium to get relief.

2: Visit   clusterbusters.com    alternative treatments outside of mainstream medicine that are showing some incredible results.

3: Read the oxygen info tab on the left. HOW you use oxygen is critical to how fast you abort the attacks. My aborts are running 6-8 minutes. The keys, high flow rate, at least 15 LPM, Non Re Breather Mask, get on it at the first sign of an attack.

When you get a chance, post an intro post on the getting to know you page, more people will see you down there!

Joe