Hello fellow Clusterheads, I don't know what to do anymore. I have been getting clusters since about the age of 15 and have got progressively worse since. Last week went to the ER three times within a 24 hour time span to basically no avail. Currently on Imitrex and it seems to do nothing in the form of stopping a future attack. I'm at my wits end. I try to sleep for less than 20 minutes and I wake up with another CH. To be honest I can understand why the call these suicide headaches, albeit I could never go as far as to do such a thing... how do I get relief? Nothing helps hot showers, hot packs, cold packs, exercise, prayer, talking about it, relaxing... I know this is something many of you can relate with but I feel like I'm going crazy!

Intended to send as PM...

Thank you for the reading material. I will definitely research some more and see what I can come up with. For the time being Ive been having some difficulty getting oxygen, and hopefully going to have that problem solved tomorrow. Honestly I'm willing to do just about anything to get these things to stop, so I hope that one of the remedies that I find on here holds some sort of relief for me.

Based on what  you've written, I have some quesitons of my own that are really important to the treatment of your pain.


CHinsanity wrote on Mar 19^th, 2013 at 11:43pm:

I have been getting clusters since about the age of 15 and have got progressively worse since. The assumption I would make from this post is you have been diagnosed with CHs for quite some time. But you really don't say if you have been diagnosed by a headache specialist. Have you? If you have, you are not receiving the aggressive treatments you should. Last week went to the ER three times within a 24 hour time span to basically no avail. What did they do for you? Sounds like a standard migraine trip. Currently on Imitrex and it seems to do nothing in the form of stopping a future attack. The pill form, or the injections? Pills are useless to cluster heads. how do I get relief? Nothing helps hot showers, hot packs, cold packs, exercise, prayer, talking about it, relaxing.

There are many threads here on abortives and preventatives. Read and read some more and ask questions. We'll do our best to help you through this. BUT, a diagnosis is critical, along with a for real specialist who deals in clusters.

God bless. lance

Please, please, do what you have to do to get yourself some O2.  It is an absolute lifesaver.  Literally.  Not one trip to the er since Ive been using it, whereas beforehand, there were countless trips .  I can now abort an attack within minutes, and it stops the attack from growing more and more painful, the faster you can hop onto your tank.  It isnt a preventative, true,  but at least you can somewhat keep your sanity.   Stay strong.   :-*

I'm convinced that prolonged use of triptans causes many of us to hop aboard the rebound headache merry-go-round. If it's not working, get off of it.

Do yourself a favor and jump into the following therapy with both feet right away:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I didn't have a good experience with triptans either, though they are good in a pinch when you need to be able to function. Heard about the vitamin d3 regimen on this board? Might be worth looking up. Good luck.

Imitrex is an abortive.  It will do nothing to prevent future attacks. 

While you are trying to get the O2 set up you might want to pick up a few energy drinks.  I prefer 5hr Energy because I can carry one in my pocket and they are small so I don't have to taste as much as I drink it.  also Red Bull, Monster, RipIt, and others that contain both caffeine and Taurene will help.  Slam one at the first sign of an attack.

Strong black coffee is helpful also.  Some drink it lukewarm or cool so as to be able to chug it down fast at the beginning of a hit. I drink a lot of coffee as a preventative.  It won't stop the hits from coming, but I've found if I start the day with a pot of coffee and keep drinking it during the day I have less hits, and less intensity.

Some Drs are difficult to get O2 from.  If you have trouble getting the right prescription let us know and we can help you get around it.  Read the Oxygen Info tab in yellow on the left to be certain you are getting what you need.  If possible I would up the lpm from 15 to at least 25 though.  If you don't need that much you don't have to use it, but I find I can kill a hit much quicker at 25 than at 15, adn consequently I also use less O2.


Jerry

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
============
Before we can responsibly give you any advice we need some information from you.

1. Who has been treating you? Who gave the diagnosis of Cluster & when?
2. What meds, doses, duration of use--on the meds you have, or are, using.
3. Have you done any leaning about headache, treatments, etc.? (books, other web sites, etc.)
4. When you found out that the ER didn't have anything helpful to offer, what did you do then? Back to your doc?
What was the outcome?

Essential that you line up a good doc. While you are getting this information back to us, start searching for a well trained doc.

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Interesting notes about the 5 hour energy drinks/Red Bull etc. My girlfriend had suggested to me to stay away from those as she thought they might make it worse, but I've seen it posted here a few times now. I think I will get some and try it out for myself.