Good evening everyone.  Had my first cluster headache at the age of six.  The Doctor told my parents I had a sinus headache. I would go for days having one or two per day.  Throughout my life I was feed decongestants and antibiotics. About 12 years ago a doctor mumbled “cluster headaches”. But, had no idea what to do about it. Two years ago another week of two and three headaches per week but no help from doctors.  This past 5 weeks have been hell and I decided to take matters into my own hands.  I returned to my Doctor’s office and this time he prescribed amitriptyline. Last weekend my wife couldn’t stand to see me in pain anymore and took me to the ER.  I left there with 5 days of prednisone.  Took the last one yesterday and the headaches returned today.  One at 8 pm and one at 10 pm.  I am using ice packs on my face and neck for relief.  In the year 2008 I find it hard to believe that doctors are not more informed on how to treat this problem.  My attacks are generally k7 and 8 with the odd k9.  I have never had a k10 and hope never to experience one. The sad part of all this is time missed from work, school, events, etc...
I am very glad to have found this site and wish you all PFDANs.
Dave
>:(

Dave,

Your story, unfortunately, is not new to us.  We have heard it too many times.  Yes, there are some minor differences, but basically the same as many of us have lived through.

Years ago, amitriptyline worked very well for me, then it stopped, after a few years of bliss.  Hopefully, it will work for you.

Prednesone is used as a stop gap medication, as it is too hazardous to take for long periods.  BUT, it stops the hits, almost instantly, and allows your other preventative to build up to the level needed.  Amitriptyline and verapamil (the other major preventative) both need about two weeks in order to build up in your system.  By the time you have finished the pred taper, the other med should be up to par.

Above is about preventatives.  You also need an abortive.  One that stops a hit, once it starts.  Oxygen, taken at at least 15 LPM, with a non-rebreathing mask is the first choice for many of us.

The second choice is injectable imitrex.  Others prefer the nasal spay imitrex or zomig to abort.

Unfortunately, it is trial and error until you find what works best for you.

But, try to get oxygen first.  It is the cheapest, and safest of all, and by many, the most effective.

Good luck!

Chuck

My god....45 years misdiagnosed!!!!!  Finally you can work on a proper treatment.  TIme to start really living.  There are many options.  Read up and ask questions and you'll be back in the saddle in no time.  Good luck to you.

Chuck gave you the basics to get you started. In short order you will find you are more knowledgeable on CH treatments then 90% of the medical community. You will obtain the best results by first educating yourself, then armed with all your new info, "assist" your doc in treating you.

Oh, and a HUGE vote for oxygen here. 30 years of these damned things and it remains my front line and most effective abortive, the basics:
Pure oxygen, at a high flow rate, at least 15 LPM, (Your lungs must get ONLY oxygen, no outside air no exhaled air) using a non re breather mask, (critical, rebreathers, nasal canulas, next to worthless) started at the first sign of an attack. I can completely abort an attack in less then 10 minutes, often as short as 6 minutes. Really Really push the doc hard on this one. It's cheap, no side effects and works so fast it's damned near miraculous.

Damn glad you found us, hope we can help you.

Guiseppi

Dave,

Wow!  45 years could be a new record...

I'll ditto the recommendation to get on oxygen therapy asap for all the reasons above.  While you're waiting, you might also want to try a single ice cube wrapped in a paper towel placed on top of the head on the hit side on a line above the ear canal.  Wet the paper towel so you get a good heat exchange.  

As the top of the head and scalp is a natural radiator, this triggers the body's internal thermostat and makes it think you are going into hypothermia.  As a result blood vessels in your extremities including your head constrict to keep your core temperature in the safe zone.

Your scalp will sting for a few minutes, but after that it will numb and the ice will do it's magic.

Take care,

V/R, Batch

I want to thank everyone for your advice and support. I was hoping the steroid would stop everything but now having headaches about every three hours.  Not as bad as before or as long but still coming.  Had two last night and got about 4 hours sleep.
One question, I have found that I have sweats in the night when I am having attacks. Anyone else experience this?

DE_Rogers wrote on Aug 2^nd, 2008 at 6:14am:

I have found that I have sweats in the night when I am having attacks.

Yup!  Very common!  As a matter of fact, in some sources, profuse sweating is listed as one of the symptoms of clusters.

It makes sense, because a lot of us have body temperatures that sky rocket during a hit.

Chuck

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.  Call 1-800-643-5552; 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.
========================

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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


MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

DE_Rogers wrote on Aug 2^nd, 2008 at 6:14am:

One question, I have found that I have sweats in the night when I am having attacks. Anyone else experience this?

As Chuck said, it's very common.  Just another "pleasant" side effect, along with the droopy, watering eye and the runny nose--symptoms that indicate that the autonomic nervous system is involved:

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

Best,

George

Warm welcome, Dave! :)

Wishing you PF time,
Sanna

Welcome! I have to agree with the others,, OXYGEN!!!! I too lived in misery for a great many years, O2 literally brought me back my life. Good luck friend!   Tuck

I would like to thank everyone for your support.  The cycle may be ending.  I have had about 24 hours PF and slept through the night. :)

DE_Rogers wrote on Aug 3^rd, 2008 at 11:59am:

The cycle may be ending.  I have had about 24 hours PF and slept through the night. :)

WOOHOO!!!!

I never get tired of hearing that one of my fellow clusterheads are PF!!!

Chuck

Had appointment with Doctor and he is sending me to a neuro. Could somone tell me what a "Shadow headache" is?  Thanks.  I ask because I am still having what feels like a CH coming on but it doesn't get full blown. :)

That's a shadow!! The feeling that a "cluster headache" is coming on, but it never gets past the dull, annoying, headache pain. It feels different from a normal headache, you know it's the begininning of a CH, but it just never ramps up.

Strong coffee and/or energy drinks are sometimes effective for beating those down. Oxygen if you have it available.

Guiseppi

Thanks Guiseppi.

The GP wouldn't prescribe O2. Left that for the neurologist.

Dave
:)

DE_Rogers wrote on Aug 13^th, 2008 at 12:05am:

Thanks Guiseppi. The GP wouldn't prescribe O2. Left that for the neurologist. Dave :)

I have a feeling i'll have the same problem.  My GP is the one who actually diagnosed my CH many years ago and I thank her for that.  She wasn't sure till she sent me to the neuro.
I remember her saying, I wonder if you're getting Cluster Headaches and I was like, what the heck is that?  She though, like your GP will probably send me off to the neuro for the O2.  It will be well worth it to have on hand at home when I need it.  At work, I usually take 50 mg of Imitrex as soon as I get there and the whole day is cluster-free till around dinner time when the shadow comes and plays games with me.  

I'm thrilled to hear you're PF.  That's always nice news.