Hello all,

I'm 32, I've had the evil head for as long as i can remember.

Just starting another cluster over the last few days :(
A concerned freind (who witnessed an attack) researched and found out about sumatripan, which I now have..

Fingers crossed :)

Tigs


p.s. Why can't i just get a new head?

If you figure out the new head thing, give me a call! ;D

What else have you used that has and hasn't worked? Have you tried oxygen yet? You'll hear that question a lot as it's proving a miraculous abort for many. Give us a rundown of your regimen when you get a chance, maybe we can toss a suggestion your way.

Glad you found us, welcome home.

Joe

Hello Joe,

Thanks for the welcome, I am very glad to have found this place!

In answer to your question, mainly lots of painkillers.

- At university a rubbish GP diagnosed something (sorry) which didn't work, then beta blockers which i didn't take.
- Then I had acupuncture, which I thought had worked. Once the attacks returned I researched and figured it was clusters I had.
- Otherwise lots and lots and lots etc. of nurofen plus.

But after yesterdays attack was witnessed by a freind, with the swollen leaking face, and whimpering and vomitting and all that fun stuff. She researched and found out about sumatriptan which I now have.

I think it has helped, the 'tightness' indicating impending attack has gone. But my head is still really sore from yesterday so It's kinda hard to tell.

I've not tried oxygen, but from what I've read here I think I really need to..

Cheers

Richard

OUr experience says: worth every penny!

LOCATING HEADACHE SPECIALIST

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.
===========

 
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--link, line above--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]

Hey tigster,

Sounds like maybe you're trying the pill form of Imitrex/Imigran? (Sumatriptan)

Imitrex injections are the favored sumatriptan delivery method amongst most clutster heads "in the know"  8-) here. These are used to abort an attack upon onset.
Yep, O2 will be a good thing to have (!), and if you connect with a decent doc, you really might want to get on a  preventative that'll stop most of your attacks so you only have to use O2 or imitrex on occasional hits that breakthrough.

Or you could try non med options such as melatonin, taurine, kudzu, RC seeds, etc.

Lotsa good stuff about how to ward off the beast to learn about here.  ;D

Thanks Bob and Be.

I've got the nose spray version of Imigrane.
I had the onset of a really nasty one this morning, used the spray and I am now not in pain :):):):):):):)::):):):):):)

I'm pretty fookin chuffed.

Next stop oxygen and preventitive measures. Thanks for the advice.

Cheers

Rich


"I told you it hurt!" ;)

tigsytigwell wrote on Oct 14^th, 2009 at 4:38am:

I had the onset of a really nasty one this morning, used the spray and I am now not in pain :):)

How cool is THAT!!??  ;D :)

That concerned friend of yours is an incredibly good friend indeed, wouldn't you say?  :)

It is beyond coolness. I'd say cooler even than papa smurf.

I cannot disagree about my freind. I'm gunna buy her a mars ice cream. This is going to have a bigger impact on my quality of life than anything else ever has.
She's the only person I've ever let see me in full attack mode. And now she's bloody right again  ;)

I've been looking around here and Ouch site. Listening to so many others similar stories is perversely comforting. I can't believe most of us endure so much pain for so long!
I find it even harder to believe there's people suffering far more than I have (had) to..
As i've said many times during attacks, "WHY?".

Richard (95% PF)

tigsytigwell wrote on Oct 14^th, 2009 at 4:38am:

I'm pretty fookin chuffed.

That's one I havn't heard before  ;D  I'm stealing that one  ;)

Weather NO! You darn CH tea leaf ;)


My update:

The Imigrane nose spray seem to have worked really well for me. I've aborted the last 5 attacks (5-10 mins), over 3 days. I get hit once in the morning and once in the evening. And have had only shadows for the last 2/3 days. I feel like this cycle has been drastically reduced in length..
I also gave up alcohol since the attacks started.

When I can I shall now get hold of O2 for the next joyous bout.

God help me can I keep the beast away forever???

Good luck to all who are still looking for help.

Richard :)

Sorry that I didn't catch your location in my first reply.

Couple of local sources fo you:

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
====

And Institute of Neurology, London. Be patient seaching; not well organized but very good outfit.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
=========
And your most excellent support organization:

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

Thanks Bob,

Had a nasty one last night. The imigrane didn't work :(

The bastard beasty came on real quick, so maybe I didn't use the spray in time?

Rich

Thats why we prefer injections and not spray. The spray hardly has any effect on most ch patients. Get some injections instead.   :)

With any abortive, waiting to see if you are developing a full blown attack before using it will markedly reduce effectiveness.

Hit it at the first sign!

Hi CH's. So 2 years on:

Last year I had no attacks! I went on holiday to Thialand around Oct-Nov. Not sure if that tricked them? Will be testing this out again nextyear..

However this year I didn't go on holiday and so the usual cycle returned. For the first 3/4 weeks they were very managable with the nose spray and oxygen. As usual I was getting one attack in the morning and one in the evening - but was able to abort them all in around 10/15 mins with the nose spray and oxygen.

Then just as i think the cycle was ending, they have returned far worse than ever. For the past 3 days I've been getting up to 6 a day. So far i've managed to abort them all either immediately with an imigraine injection or after 10/15 mins with the spray. (Run out of oxygen). So i'm a bit concerned with how they have escalated.

Any similar experiences or thoughts appreciated!

Thanks

Richard CH

Hi Richard,
You most likely are getting rebound headaches from use of so much Imitrex.

Have you tried the Imitrex Tip?  See yellow tab on the left side of your screen.  This 1/2 dose or 1/3 dose injection conserves expensive med and reduces possibility of rebound headaches which are common with tryptans.

Fill up your o2, no rebounds!

Often a cycle ends with a "Grand Finale", lets hope that's your situation.

If not, a preventative med with transitional may be best.

Hope this reply finds you PF.

-Gregg in Las Vegas

Yep I think you're right. Things have eased down considerably over the last couple of days. My head is not 100% normal again but pretty much PF for 2 days thanks.

So a flight to Cape Town next week looking less worrying :)

Also I've read a lot about vitamins / fish oils / magnesium suppliments. Probably too late in this cycle now for me to test these out..

Good luck to all CH's..

Never too late

Also I've read a lot about vitamins / fish oils / magnesium suppliments. Probably too late in this cycle now for me to test these out..

I'm staying on this regimen year round now. It's my intention to "block" my next cycle with it.  ;) Time will tell.

Joe

Wow this was so long ago, I've been pain free so long I've forgotten the hell that this used to be.

The vitamin D regime worked wonders for me.

First year i tried the regime i felt a difference within a few days, and had kicked the current cycle within 2 weeks.

The next year it took a few days of the regime to clear the cycle.

Since then, i now considered myself cured.

My only reminder of the beast is a very mild shadow maybe once or twice a year.

Thank you so much to whoever promoted this information (Batch?). You have changed my life considerably.

8-)