Cluster Headaches Community Group
Share information on what is known about and how to treat cluster headaches.
I'm so happy to have found a support group for Cluster Headaches. They are so rare. I was diagnosed Dec. 09 and my first episode lasted 3 months. I have been plagued with horrible migraines since I was 12 but Clusters are 100X the pain. Migraines are Horrible! But when my hubby and I did the internet research on Clusters, I totally understand why they are called Suicide Headaches. I'm ashamed to say I've been there. I'd NEVER thought I'd hear myself say those words, but those of who experience long bouts of ongoing torture, can understand. You just would do anything to get the pain to stop. It's an OUT OF BODY EXPERIENCE. It's no longer bearable and we try everything to get it to stop. Treatments that may have worked for a time in the past no longer work for some unknown reason...WHY? Why is that? We don't know and end up in the hospital, or at the Doctor's office or on a message board full of strangers...seeking help and answers out of sheer desperation. Even Doctors don't have a cure. It's like a treasure hunt...a sheer guessing game. I'm in a cycle at the moment and went in for a shot of Demerol and even THAT didn't take the pain away or knock me out. I had run out of my precious Sumavel injections...My insurance only covers 4 (yes 4) shots per month...not nearly enough to even BEGIN TO TOUCH the cyle of the DEVIL IN DISGUISE...THE CLUSER HEADACHE. The Dr. also sent me home w/ a sample injection of Sumavel (God BLESS him!!). I have been on 200 mgs. of Topamax as preventative and it doesn't do sh--. I haven't even gotten the benfit on it's glorious "weight-loss" side effect everyone else speaks of LOL!!! Have you all guessed now that I am female? Another anomaly. I have tried Vicodin too. Nope...Clusters laugh a Vicodin. They don't TOUCH them. I "will say" that even though that shot of Demerol alone didn't conquer the Demon Cluster, the "combo" of the shot, the Demerol and HIGH FLOW PURE OXYGEN broke the cycle. I would like to start a separate thread on Oxygen therapy too :). I have had good results with this but it has to be pure oxygen, the right non-rebreather mask and at high doses. I am not a medical Dr and am only explaining what works for me. Anyway, I am headed back to the Neuro this week to talk about a new preventative treatment and I'm really hoping to get more feedback and more members here for Cluster headache sufferers bc I know there are more of us out there who need help, information on how to ease pain and get help and have a place to come to connect to ppl who are having the same issues. I will also add that I am also newly diagnosed with Multiple Sclerosis as of March '11. A whole other Journey and also very eye opening. I joined that DS Support Group recently as well and its helped me a lot. Here's wishing you success in aborting the Clusters and fewer to No attacks in the future. I would love to hear from all of you and any new member lurking out there. - Oz
deleted_user
please help me help my spouse. 7 years of this is too much! How do you get rid of it!!!
deleted_user
Hi JanniLee. I, as are all the members here on Daily Strength, are sorry to hear of your spouse's suffering. anyone suffering from Clusters knows that ever "ONE DAY" is too long to have a headache. There are several treatment and prevention options, however, each person is different ...so the actual effect and outcome of the treatment(s) also differs from person to person. Question: Has your spouse tried any preventative treatments yet such as Inderal, Topamax, etc.? Some work and some merely hinder the attacks, rather than prevent them altogether. consult a Doctor for the best option. Also, other generally popular meds are Firocet and Imitrex/Sumavel injections. The reason the injections are preferred over the oral pills is the speed to which they are absorbed into the system. A pill can take as long as 30mins-45mins to take effect, and by that time, it's too late. The pain is just too severe. And as I'm sure you know by now, the faster you can abort, the better chance you have of total relief. Many people (including myself) have had success with Oxygen therapy. Has your husband looked into that? The correct re-breather mast and regular are crucial. I cannot emphasize this enough. Deep breaths are also important to obtain the full effect. Again, the earlier the sufferer gets on the O2 once the attack begins, the better his /her chance of aborting. I have success with 25 LPM (liters per minutes) or 15 LPM. I believe you will need a prescription from the Dr. for the regulator and possibly the oxygen. Many companies deliver 02. I have mine delivered to my doorstep. I get the "E" tanks ("E" is the size) as I can handle moving them up and down the stairs myself if my hubby isn't around when an attack comes on. I keep a tank and mask upstairs in our bedroom, downstairs in the guest room and in my car. If I need to breathe the O2 when I'm driving, I make sure pull over, as it can make you a bit lightheaded temporarily. The last thing I might suggest is I had quite a horrible attack 2 weeks ago that just never let up for 5 days. No relief and I just could not stand it any more. I called my doctor and he had me come in for a shot of demerol. Sometimes a heavy duty pain killer can "break the cycle" so-to-speak. Obviously, I am not a Dr. and can only share what brings me relief and what I have learned from the horrible disabling pain of Cluster headaches. Be sure to consult a Doctor. But honestly, most Dr's don't know much about these headaches yet. They are very rare and very mysterious, so we often times need to educate them of our symptoms, the high level pain, and what is helping other sufferers. There is also a very informative website called www.clusterheadaches.com. You and your spouse may already know about this, but if not, you both may want to take some time to read there as well. I sincerely your spouse gets relief soon. So good of you to post here for advise. Please keep me posted and let me know if I can be of any further help. Thanks! -OZ
Join the Conversation