I am kind of at my wits end so I decided that maybe joining a Message Board with people who understand my pain might work.

I am 35 years old and have had Cluster Headaches since my early 20s. Misdiagnosed for a good number of years (of coarse...) until my late 20s when an ER doctor finally pointed me in the right direction. Since then it seems I have tried everything.

I had one neurologist just give up and stop returning my phone calls all together and now I am with a very nice knowledgeable doctor with very little result still. So I am wondering if anyone who is going through this might have suggestions I could maybe bring up to my doctor.

The one thing I have that DOES work for me is the Imitrex. Unfortunately, my insurance will only cover 4 needles per month (10 if my doctor write scripts for a different "delivery method") but, anyone who knows clusters knows that even 10 can be far from sufficient. I also have the Imitrex pills (which my insurance company graciously gives me 9 pills per month - so I get 18 because I cut them in half). Needless to say, not only can I not get enough of what I need but I am living in constant fear of rebounds or possible stroke.  :(

Things that we've tried that haven't worked include: Oxygen, Topamax, Prednisone, Verapamil, Melatonin, B6, Warfarin and Lithium. I even tried things like Ginko and some awful Capsaicin nasal spray that just made my head feel like it's on fire as well as in pain. I am sure there are a few more things I am forgetting.

At this very moment, I sit here at my desk in work exhausted from last nights attack which had me up twice. I am absolutely terrified and on the verge of tears because I know I have to go to sleep tonight and I only have 1 needle left (until January 7th when my insurance will give me more). It's sad that just typing "only one needle left" is making me cry like a child. My current attacks have been going since Mid September, this is a VERY long period for me. Usually my episodes only last a month and a half, two at most which is "tolerable" (is that even a word I can use?) but now at almost 3.5 months I am really lost.

I have a wonderful boyfriend who is very caring and tries to be helpful, but I wanted the opinion of people who know what it feels like. Does anyone have any suggestions of things that worked for them that I could bring up to my doctor? More and more I have been reading a lot about a couple of the surgeries but I would really rather not have it come to that.

Thank you all so much for your time.  :)

Hi and Welcome

Yes, we really do understand CH as we either get it ourselves or support someone with it.

Doctor problems seems to be something that affect most of us as CH knowledge is a rare thing even amongst too many neurologists. Where are you in the world? There may be someone who can suggest a good doctor or two for you.

You said you've tried "everything". It's possible that what didn't work once will now work, possibly using a higher dose or just due to the way that CH seems to change over time.

For oxygen, how were you using it? There is a load on info on the oxygen link on the left. Using a high flow rate makes a huge difference. For some people who don't get results at say 10lpm get amazing results at 25lpm and the right mask (non-rebreather) is important too.

Also have a look at the topic - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - where people have been getting great results from vitamin D3.

And keep reading like mad. You'll find so much here from our collected experiences of dealing with CH.

We're a little slow at work this week from the holiday so I have been reading your blogs almost all day. I am hopeful about some of the things I wrote down. (one of them being the Vitamin D3 and Fish Oil)

I actually found my initial doctor on the OUCH web site, but he seemed to be an "internet surfer" more than having any experience with CH. Eventually when he couldn't figure it out he stopped returning my calls. The doctor I am with now has had 2 other patients in his career with CH so that is better.

As for the oxygen, it was so many years ago I couldn't tell you how much it was. But you raise an interesting point, I think I will talk to my doctor about retrying things the old doctor already tried. Maybe they were the wrong doses. **cross fingers**

Thanks for the reply, as many people on here have said it's just nice to know someone else knows how you feel. I'll be sure to let everyone know if something works out well for me!

If you are planning to stay here, please:

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
===============
Your experience reinforces to much of what we know: must have a doc with knowledge/skill dealing with complex headache disorders. So,

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.
=========
Print the PDF file, below, both for your info and as a tool to use with ANY doc you see  to discuss treatment options.
===
Until lyou get set with a good doc, suggest you avoid the temptation to try a variety of treatments for jumping about will only confound any doc's efforts to get an effective treatment package into operation. I.E., you need a good leader.

Patience is the single best survival skill as you enter into this phase of getting a doc and working thru options.

---

Welcome to the board, do take a minute and read this link as HOW you use the oxygen is critical. To be effective you need to get 100% oxygen to your lungs, no outside air, no exhaled air, at a rate to support hyper-ventilation. This is best accomplished using a high flow regulator...at LEAST 15 LPM preferably 25 or better, and a non re breather mask. I abort in about 6-8 minutes using just 02, has all but eliminated my trex use.

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

As for suggestions, what was your dose on verapamil? CH'ers go above what most docs are comfortable with, some going as high as 960 mg a  day to get relief. Some didn't get relief until they combined verapamil and lithium. So don't hesitate to re-try what didn't work in the past as you may have missed the right dosing or the right combo.

The visit our sister board, clusterbusters.com for alternative treatments outside of mainstream medicine.

Joe

As Joe pointed out, some of us (I'm one) required a combination of verapamil and lithium. And as Mike pointed out, at much higher doses than the label calls for. The O2 is something you really must explore. My first round of it was with a nasal canula at 10lpm...useless. It wasn't until I found here the proper flow and equipment that I discovered how effective high flow O2 can be. There are a lot of myths out there in the medical community concerning O2 but they are just that, myths. We've also found coupling O2 with a full bottle of energy drink (Red Bull, Monster, Rock Star) can make a huge difference in the O2's already effectiveness. Read on, and ask questions. God bless. lance