Hi, Angie. No need to make anything sound "glorious" when it comes to CHs. They are the bane of our existence and the spawn of Satan. All in a neat little, eye searing package. I'm sorry you were given such a run-around, since we all know females don't get CHs, except for the many we know, do. Anyway, it's a familiar story.

Topamax has helped some, but the front line preventatives are lithium and verapamil. I take both. You don't mention abortives, but these are critical to helping us get through the day or night. O2 (pure, 100%, high flow of 15lpm or more, with a nonrebreather mask) is the best! When coupled with a chugged energy drink, I've aborted most hits in under 3 minutes.

Imitrex injections (not the pills) or nasal spray, or Migranal (dhe type of med) can do wonders to giving you control over those nasty worst-time-ever for a hit attack. And many of us have prednisone tapers to be a way to give a long term preventative time to take over.

If you haven't explored any of these you should. You must become your own best advocate and knowledge is strength. Good luck, ask any questions, and God bless. lance

These are the docs listed in Michigan that other sufferers have used:

Michigan

Ann Arbor:
Dr. Joel R. Saper
Michigan Headache & Neurological Institute

Dr. James Gramprie
Greater Ann Arbor Neurology

Kentwood:
Dr. Michael Bolan (PCP)
South Kent Family Care

Lansing:
Dr. Richard S. Ferro (Pain Medicine)

Portage:
Dr. Michael T. Ku (PCP)
Promed Family Practice

Pontiac:
Dr. Lionel Glass
St. Joseph Mercy Oakland

With an appointmnet so far away, I'd suggest you start phoning the neuro a couple of times a week asking for cancellations. It lets them know this is something serious and you just may get lucky with the flu season and someone will cancel.

Since you're getting creamed at night try melatonin, an over the counter sleep aid available at vitamin, health food stores and pharmacies. Start with 9 mg about 30 minutes before bedtime. Some go as high as 18 mg. Some split the dose in half, using half standard release melatonin, half extended release. It takes a little playing as far as the dosing, groggy in the morning reduce dose, not working increase. Many can avoid the night time hits this way.

As far as CH...you're a girl, so of course you don't get CH silly. Girls only get migrains! It's worse with the older docs, "CH is primarily a male disorder, men who are taller then average, with lionesque features, and orange peel skin are especially at risk!" That's a description from the 1980's diagnosis books!

Joe

I understand that you are not yet/now seeing a doc who is a specialist in treating headache.

Waiting for a neurologist appt is NOT necesarily the route to solving this issue unless you know this person has skill/training in treating headache. (Most neuros have little training in headache and I would not assume that he has what you need. Inquire before you continue on the waiting list.)

Until you are seeing a skilled doc and have your diagnosis confirmed, it's not wise to start treating yourself. While Cluster appears to be a simple problem it can mask other disorders which need to be considered.

If you have the option, seek a specialist:

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

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

Thanks for all your responses.  I have one major question about the Topamax.  How long should I stay on it before "giving up"? I know that sounds weak, but I really hate it!!  I will keep taking it though if there is ANY chance of relief.  I was thinking 2 weeks, does that sound fair, or should I give it longer?

Hi Angie, I have I am struggling with this pain for many years. The things I have learnt is you must not panic or get mad when it attacks. you must know that there will be an intense pain deep in your head right behind your eye and you must pass the time with it. calm down and let it be there. because if you panic and get mad touch it or sth else you just make it worse and worse. don't touch your face and even don't push it anywhere. it is very important to be calm and let it do whatever. I know it is hard but you just do it and it will not get worse. just take your half face under a cold tap water and let the water cool down the area, it decreases the pain for some minutes and then you can try it again. I have used a medication called AVmigran. it is made in turkey. I believe in this medication, for me 1 or at much two of these pills stops the pain at all. also I have used pure oxygen treatment and it didn't stop it but reduced the pain for a little time. use these advices and I am looking forward to reading from you that you feel better again.
sincerely yours
Hope1987

For people who get CH when they sleep, which is most people, they seem to happen as soon as they go into REM sleep, which is typically about 45 minutes after falling asleep.

Not sure how it works, but plenty of people here have posted about success in getting better sleep without being interupted by CH.

And don't worry about ever posting a rant. Everyone here understands what its like to have a CH and how a rant can help by getting something off your chest.

Pain, especially at the level induced by CH, is something that makes you think.

You've mentioned being on topomax for a preventive but nothing about anything to abort CHs. Do you have something like oxygen (read up about it on the left) or imitrex injections? Using oxygen I can kill off any CHs in about 5 minutes, which is a life changer.

Keep reading and learning, knowledge is one amazingly good way to cope with and get the best of the beast.

Update:  I received my appointment date from U of M Neurology Clinic.  It is May 15th.  Nice.  Disenchanted, I called my Dr.s office to make a follow up appointment and suggest some abortives.  I could not see my main GP, so settled for the other Doc in the office...who is a young female.  She had no clue what a cluster headache was, refused to give me O2, said there was nothing to support it's effectiveness and that it was "rarely given".  My mouth dropped.  I asked for Immatrix injections, she said they were not available.  She did agree to give me a Prednazone taper and she upped my Topomax.  She said my blood pressure was high when I went in...really? after 4 effing dances with the beast, no sleep and you saying I have a headache??  I wonder why??  She basically also stated that the knowledge that I have received on here is BS and unsupported.  I am beginning to dislike Docs again, and will be looking into Welders O2 and Batches Vit. regimen.  I really feel alone on this space on the planet.

AngieH wrote on Jan 29^th, 2013 at 11:56am:


So she had no clue about what CH was but continued to treat you. This sounds like incompetence.

If she knew nothing about CH then how did she know what was BS and that it was unsupported? You'll often see people posting articles from medical journals which is hardly a BS source since they cover the research work of experts in the field of CH. If she doesn't recognize them then she is in serious need of some education about how research is done.

Do see another doctor.

And good on you for looking into welders oxygen and Batch's vitamin D3.

Sadly the medical comunity is still terribly under-educated on CH. It requires you become your own best advocate. Do check out the welders 02, first time you abort an attack in 6 minutes you're like DAMN!!!!!!!!

Joe

Potter, I can only try and explain things from my point of view.  When I first joined this group in 2008, I suspected that I had Cluster Headaches and found a lot of info on here and it was a lot of help.  I was quiet, I wasn't quite sure what I was going through.  For the next 3 years I had 2 cycles and during those cycles only one attack a night...two tops at the peak of my cycle, and that wasn't common.  I really thought I had a handle on things.  In retrospect I did just fine, and would gladly go back to that.  This cycle, the game has changed.  I'm getting 4 a night with much higher KIP levels, so I'm talking, I'm reaching out for help, and I'm not in a position to handle it anymore on my own.  I do understand what you are asking, because if my other cycles had been like this I would be asking the same thing.  I'm sorry that anyone has to go through this, and if in the future I can be of help to anyone, that will make me happy.  I don't understand why my cycle has changed, I don't understand a lot about what is going on, but I'm guessing it's time I need to try.  I hope this helps fill in any missing info.

Give it a rest Potter.

Joe