Hi, I'm Mallory...a single mother of 2.  About 3 years ago I got a sinus infection and the headaches wouldn't go away.  I had 2 CT-scans and had a pain in my head for 92 continous days.   18 dyas ago I was sitting at home on my couch around 10 AM and BAM!!!!  I waited 4 days  before going to the doc.  I was taking tylenol to help control the pain some.  I went in the doc's office and he gave me a shot of demoral for a migraine.  3 days later I went back and saw another doc in the group.  We talked about my pain; the intesity, duration, and frequency.  She told me I had cluster headaches and prescribed Maxalt and Migranal.  Both help with the pain pretty good.  She also gave me information for this website and I didn't look at it until 5 people in 10 minutes said, "I suffer from migraines too".  I realized that people just don't understand what I'm going through and I need to have someone I can talk to.  I hate taking the meds..the migranal gives me horrible tummy cramps.  I'm tired of waiting on the next headache.  I'm exhausted from not sleeping, because the one thats wakes me up hurts so bad it makes me want to jump in front of a train.....anyway, I'm going go look around.  I'm very glad I came here today.

hi Mallory

welcome, I know what you mean about people saying 'oh I have migraines too' or 'yes I get really bad sinus headaches', Im not saying their pain isnt bad - I get bad migraines too - but it is just not up on the scale with CH!

Has your doc talked to you about oxygen? mine still won't prescribe it to me but I know it helps a lot of folks, I'm on verapamil at the moment - has your doc mentioned trying a drug to try to prevent the attacks?

I find Maxalt (rizatriptan) does work for my CH, but it takes 30 - 40 mins to kick in which is just far too long, Ive got sumatriptan in the nasal spray and there are injections too which work a lot faster (although I dont have those - doc reluctant again!).


hope you get some relief soon



Fran

Hi Fran,

I'm not saying their pain isn't bad either, but this pain is almost indescribable and you get it 3, 4, and 5 times a day.  

She didn't mention O2.  I haven't heard of it until now.  I need to check into that.  The Maxalt had been working in under 10 mintues and normally 1 would do the trick.  But I noticed the other day that it is taking a little longer and I had to take 2.  

My doc told me that there really wasn't anything she could prescribe as preventative.  Is there something out there?  And is this going to be another fortune I have to fork over for comfort.  Neither of the meds that I'm taking are cheap.  I'm going to be losing my insurance soon and I can't afford another high dollar med.

I think i need to call my doc and talk to her more about this.  

Thanks Fran.

The Maxalt MLT is a triptan that melts under the tongue and if it works, usually does so in 10 minuutes or less.  I used to find them helpful, now, not so much!  Imitrix injections are especially good for nighttime hits.

O2 is one of the best abortives and it is cheap, no side effects.  My insurance won't cover it but it is a manageable expense.  Check out the oxygen info to the left (highlighted in yellow).

Talk to your dr about Verapamil; it is a good med for preventing the beast from breaking out.  My neuro started me and last year I found that 240mg worked but I now take 480.  Lithium is another that many are on.  

Oh!  Another thing I learned about here are energy drinks with caffeine and taurine!  I like Rock Star Light Vanilla; Red Bull is another brand (I don't like bubbles).  When out and about and away from O2, I might take Maxalt with an energy drink and coffee!  Believe it or not, it works as an abortive and I do not get wired.

Check out the medication and treatments threads; you'll learn a lot.  

Good luck and may you be PF! :)

Welcome to the board. Yeah there are a number of effective preventative treatments available. Unfortunately you suffer from a fairly rare disorder and most doctors just aren't up to date on its treatments. The more common prevents are verapamil, at doses much higher then most docs are used to. Some on the board go as high as 960 mg a day to get relief. Then there is lithium and topomax. All require a great deal of monitoring by a doc so it's important to educate yourself first, then get your doc on board.

As far as abortives go....what you take when the headache starts. read the link on the left "Oxygen Info"...can't miss it...they made it all yellow! It has all the info you need to take to your doc and get it prescribed. I can stop a headache in as little as 6-8 minutes just by huffing pure oxygen. It's damned near miraculous the first time you do it! Takes some pushing sometimes to get the doc on board  but the payoff is worth it.

Start reading like a mad woman. Most find they get the best results by educating themselves first, then partnering with a doctor to plan a treatment regimen. We'll help you every step of the way! ;)

Joe

An excellent first learning article. Get the whole thing, 2nd line link.
=========

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Welcome,


         Im sure you will get some great advise here.  Things will get better soon.


                             Coach Bill

Good advice so far....

Before bedtime you might try some Melatonin (OTC) about 9-15mg. It helps you get thru the REM sleep (where the CH occurs) and gets you some rest. Don't get discouraged if it doesn't work the first time you take it.... keep taking it. It works for a lot of us. (Took me three tries till I finally kept it up - now I swear by it).

O2, O2, O2.  Used properly, it's the greatest thing since sliced bread in my opinion. Read the info on the left...

Hugs BD

Thank you.  I'm sorry it's been so long since I've been back and able to post.  I've been reading all this and have another doc appt. on thursday.  I'm EXHAUSTED.  I took topamax during my 1st cycle, my doc thought I was having an outbreak of migraines (which I also suffer from), didn't do anything except make me crazy.  I keep telling her this was different.  She had me on Imitrex and I was taking too many pills for each headache.  So, she put me on Maxalt.  Finally, the headaches went away.  This time after telling her about the pain and everything I was going through...she said CH.  I'm on Maxalt and Migranal now.  Maxalt is taking a little longer to work...15 to 20 minutes.  Migranal works ok sometimes.  

This cycle couldn't have picked a better time in my life to show up.   :'(

Mallory,
First welcome to CH.com. The folks above are giving you some very good advice. They know what they're talking about. Educate yourself about CH, it is a rare condition and most Doctors have little training in headaches...

Please don't mix the Maxalt and Migranal together, this is extremely dangerous. (24hrs. apart.) Also Migranal, for me and most here, is too slow acting to stop an attack.

Imitrex pills are too slow also, we need the injections or the inhaler form.

Oxygen used at 15lpm or higher, through a NON-REBREATHER mask, and used at the first sign, aborts the attack. This works for at least 70% of us. I abort over 90% of my attacks with it.

Best of Luck, Don