Hi I'm Anna. I have had clusters for about 10 to 12 years tho I was misdiagnosed for around 6 of them. I found this place yesterday and read and read. I ran off my inlaws with an attack (if I knew that would work i would have used it years ago) on Thanksgiving day. No one seems to get it that these things really hurt that bad and I have been called everything from a faker to a hypochondriac, so I have learned to hide them the best that I can. I have never met or talked to another person with clusters. I'm episodic with two 3 month cycles a year. I started a new one about 3 weeks ago and boy is it a rough one. Usually I will get a shot of Prednistone and a taper that will knock it back but it didn't work this go around. I am currently taking 750 mg of Verapamil and MaxaltMLT. I get them on my right side and the headaches last about 45 min to an hour. Anyhow thats about it, I'm glad there is a resourse like this around.

Hello, Anna. Sorry you had to find us but welcome aboard.

Charlotte

Now the learning begins! Sounds like you have a doc but hope that he is an expert in headache vs. your primary care. Sophistication in working out a treatment plan is needed.
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Start by exploring the buttons (left) starting with the OUCH site--and follow the multiple links there.
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Good overview article--print the whole thing.

 
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]
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Then consider buying one of these.


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.

Hi Anna and welcome. You are amongst others who understand your pain, you are not alone with these anymore.

 Barry :)

Hi and thanks for the welcome. Thanks Bob for the links, I found it very interesting almost exactly what my doc told me about them. I'm glad not to be alone any longer, but sad to see so many are here, I thought these were suppose to be super rare or something. I guess not.  :)

Be welcome, Anna, amongst us fellow sufferers. It is a problem most if not all have had to deal with: people who do not understand, simply because they have never seen this rare affliction before nor do they understand the enormous pain, plus the fact you never meet a clusterhead makes it very lonely during an episode.

But as our dear Barry already stated, you are not alone with it anymore.

PF days ahead, Pascal.

Hi Anna,

I would strongly recommend printing off the 'Letter to Friends and Colleagues' found at the top of this forum. It does an excellent job of putting across just how nasty CH's are, and what a CH sufferer has to put up with.

Wishing you PF days,

Kind Regards,

Ade.

Neosho, as in WISCONSIN?

We've got lots of Wisconsinites here, Anna.

Welcome and best of luck in your journey with CH.

Hi Anna and welcome aboard but I'm sorry you have to deal with this horror. You'll find a tremendous amount of good information here. Here is something that worked well for me and the price is right:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Welcome Anna
This is a good place to be.


Paul

Hi Anna and Welcome to Clusterville

 You didn't mention oxygen.  If you don't have it . . . GET IT!  Works for most of us to abort (70+%).  Used at the first sign of attack, I can kill him in minutes.

 Proper flow-rate (12-15 lpm) and mask (non-rebreather) is essential for best results.  It's fast/effective/cheap.

 You've found the motherlode of CH info/caring/sharing and the folks on this site truly understand your pain.  

 Be Safe,   PFDANs

   Richard

Welcome to Clusterville,

And you are NOT alone. This is a RARE ailment, but over the years we've all found this site, so all us rare birds are HERE now and it's not as RARE as it once was. (Did that make sense?)

I second the O2 post.  15-25 liters per minute with a NON-rebreather mask (Check the post from Cluster Chuck on the proper useage of O2). Used properly it aborts for about 70% of us and we swear by it.

Melatonin at night (12-15mg) will sometimes abort night hits before they get going and let you get some sleep (I've been on it for years - I'm chronic).

Red Bull (energy drinks with at least 1000mg of taurine) at the first sign of the CH will sometimes abort a hit in it's tracks.

Read READ read!! We've got 100s of years of info on this site from people who DO UNDERSTAND what you're going thru and if you've got questions - ASK them -- someone will be along to answer them. We're here to help.

Again welcome...

Hugs BD

Thanks very much for the welcome. I guess it wouldn't be rare here now would it?

OK I have a few questions. How much does oxygen cost? My doc was going to prescribe it but my insurance company would only pay for it after my major medical deductible has been met. Thats $1500. Can you get it on your own cheaper?

I see there is a section for children with CH. How very awful. I have two kids age 3 and 7. What are the chances I passed this along. Does anyone know anything about heredity?

How much melatonin do you take? Do you take it year around or only during the cycle. Does it interfere with any other medications?

Hello Anna & Welcome to a good place @ a painful time.............everyone has given you wonderful advice, and keep reading................
The people on this board are angels, and will extend themselves to assist another 'family member".
deb
[smiley=hug.gif]

Anna,

 Re the heredity . . . has been discussed often . . . If I recall correctly, chances are slim you'll pass it on, though we do occasionally see family members with the beast . . . I'm sure Bob J or someone else will be along with the stats, but don't add that to existing stress.

 02 availability.  Easy!  Check the Yellow Pages for medical oxygen suppliers and give them a call.  Ask for their cash price on "E" tanks per exchange and if their is a deposit.  Depending on where you are in the country, prices vary.  I pay $10 per tank (I keep twelve) . . . and there was no deposit on the tanks.  Ask about regulator prices . . . you need a minimum 15 lpm regulator and many prefer the 25 lpm regulator.  All med supply houses carry 8 lpm regs (NOT nearly as effective), but often that's what is offered.  Once you get the price for their regulators, go to ebay and compare prices . . . will likely be 1/3 of what the med supply houses charge.  You can get a 15 lpm regulator on ebay for about $40.  They will have the non-rebreather masks . . . should be cheap . . . til you can get one of the improved CH masks which are available on-line.

 You might ask the med suppliers if they have any other customers that use 02 for CH.  If so, they'll know what you need.  You DO need multiple tanks.  An "E" tank will give you 45 min of 02 at 15 lpm. . . . which will kill several small hits or two larger hits (for me).

 Hope this helps,

   Be Safe,   PFDANs

     Richard

I bought my own oxygen for several years before Kaiser would start picking up the bill, now APRIA  delivers what I need! Before that, I scored my own regulator, they're available on e-bay, all over the internet. I rented the e-tanks from a medical supply store for 4.25 a month. Refilling them cost 11.25  each. It's suprisingly cheap and damn it was incredible how well it worked for me. I used PMS, (Physician Medical Supply), but I suspect they are all fairly close in price.

Welcome to the nut house, damn glad you foud us, wishing you some pain free time soon!

Guiseppi