Hi all.

A very "Sociable" Ancient Brit Male here (56).

Only recently diagnosed with CCH though clearly have been having them for at least 20 years now and this latest cluster has now been going on for about 18 months with the only remissions being a day or so at most every once in a while where attacks are shorter, less severe and less frequent during the day and just one completely CH free day about a month or so back once I was finally up to the 240mg dose of Verapamil initially prescribed by my neurologist a few weeks earlier.

Now having to slowly work up to an even higher dose as the initial improvement was so short lived so fingers crossed increasing the size of the sledgehammer will improve the dent it makes in the beast. (Not holding my breath though and am now considering putting my name on the waiting list for a head transplant if and when they become available.) LOL

One specific thing that interests me with this being a relatively rare condition is whether or not some of my other "unusual" companions like Vascular EDS and/or any other connective tissue disorders or other "weird" and/or rare conditions I have might also be more common amoung us clusterheads?

Anywho that's my first post out of the way and will try to join in more as and when the beast allows me.

Peter aka "Sociable"

"Go placidly..be gentle with yourself..strive to be happy"

Hi Peter/Sociable and WELCOME!!

I hope you find the support and information you seek here!
We are chock full of knowledgeable people who are always willing to lend an ear or hand as the case may be.

I am sorry the beast found you and hope you find ways to beat him back once again.

CYA Round the Board!

Hi Sociable, welcome.

Have you read the oxygen info link on the left?

It is a great start and has worked wonders for many of us.

All the best :)

Hi Pete,

Welcome to the board and glad you found us. I would defo agree with Iddy and read the 02 section to your left. I can abort an attack within 5 mins using a non re breather mask at a flow rate of 15 lpm. It can make the whole experience of Cluster Headaches a lot less daunting.


Lefty...!

Thanks for the welcome guys.

And yes O2 already on my to do list for my next GP appt in about a weeks time so watch this space for progress. :)

We've had several or your "landsmen" speak of low dosing of Verapamil. Makes me wonder if that is the medical standard??? But would suggest you print this abstract for your doc. He will recognize the source and it's a protocol which has gained wide acceptance.
========
Headache. 2004 Nov;44(10):1013-8.  

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

   Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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Your support group is excellent: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)

[/quote]
One specific thing that interests me with this being a relatively rare condition is whether or not some of my other "unusual" companions like Vascular EDS and/or any other connective tissue disorders or other "weird" and/or rare conditions I have might also be more common amoung us clusterheads?
[/quote]

What is Vascular EDS?

Connective disorders I wouldn't think because of the nature of cycles. (?)

Hi Campergirl.

It's a genetic connective tissue disorder linked to how our collagen (the glue that sticks us together works or in our case doesn't lol)

We dislocate joints very easily and have stretchy tendons but all our organs and internal "pipework" from bowel and bladder to all our veins and arteries also share this extra stretchy-ness leading to a range of other autonomic problems like POTS (Postural Orthostatic Tachicardia Syndrome) which causes wild swings in our blood pressure at times.

It's this that made me wonder if their might be some causal link for some when it comes to CH although I also suffer from periodic TIA's (mini strokes) too so perhaps that might be the connection who knows. LOL

All I know for certain is I have way more questions than answers right now and that always makes me a pain so please bear with me. LOL

Also spent several years being told my problems were all in my head (ie imagined) so now its rather comforting to know that yes it is all in my head but is very real and organic and not just an imaginary friend sent to taunt me. LOL

For more details here is a link to what we V_EDSers call the VEDS Bible:

Beware its a long and possibly very boring read. LOL

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Welcome,

I want to add my voice to the Oxygen therapy chorus. Oxygen doesn't prevent the attacks, but it sure as hell stops them in their tracks if you know how and when to use it.

I would strongly suggest doing whatever it takes to get rigged up to use O2 at a much higher flow rate than 15 lpm.

Yes, 8-15 lpm does work well for some folks, but many, many others give up on O2 "because it doesn't work."  In reality, they simply needed to increase the flow rate to support hyper-ventilation on 100% O2 for a very few minutes.

I am a prime example of a person who suffered needles years of agony because I bought a 15 lpm regulator that people often suggest.

Most doctors are still way behind the curve on this, so you may have to do it on your own. Become proactive in your treatment and Start the research now, and you will be glad you did later.

Marc

Sociable,

I have what they call rolling veins. The last time a nurse tried to insert a needle she said it saw the needle and already rolled on her. LOL ;)

But the time before that was terrible. They used a butterfly needle, which usually is good for them/me, but the nurse went all the way through the vein and it swelled up....a great big bubble!! That was scary!! It was blood leaking into the skin.

It sounds like you have your share of problems...I'm sorry.

When talking to my doc about flow rate he doesn't want to go pass 12. He said we will see about higher later.

So far I've been back to shadows.

Hi Peter,

don't know where you are in the UK but I'm down here in the west country.

Lucky you found a neuro so quickly - I went through several cycles before I found this site then had the courage to tell my GP that I wanted to see a neuro - best advice from the GP was give up smoking and bear with it - oh! and migrane tablets tho' he did dole out one or imitrex per week. Downright refused O2 and verap.

The Neuro at the local hospital was great - has a friend a GP who also has CH.

Anyway one of the suggested treatments in the 'plainboard' link is 9mgs of Melatinin at night. I tried it and it worked for me. You can't buy it in the UK have to get via web. The neuro was suprised that I would buy something over the net and take it - he's a nice guy but has never had a kip 9/10.

If you want to try melatonin the site I use is the Agestop site which is well known and respected American site.

Best of luck and PF days.

North Hertfordshire here Melvyn.

Actually been under various Neuro's since 1990 for suspected MS then TIA's then cervical stenosis so its taken near on 20 years to get the dx even when they have been seeing me trgularly for that long. LOL

Have a great GP now though and she is pure gold. I actually saw her this afternoon for an extended appt to go through it all in detail.

She has about 10 other CHers on her list, but I seem to be the first Chronic (so far) she has already made a point of genning up on it because of the other sufferers but still appreciated all the extra info I supplied via the links here.

Verapamil already up to 320 and heading for 480 soon and she is already geared up to get the Neuro to approve O2 if the higher dose of Vera doesnt make a dramatic difference before too long.

Thanks for the heads up on the melatonin btw, I will make sure I have a good read up on that too now.

All the best.

Sociable wrote on Aug 6^th, 2009 at 12:26pm:

... Also spent several years being told my problems were all in my head (ie imagined) so now its rather comforting to know that yes it is all in my head but is very real and organic and not just an imaginary friend sent to taunt me. LOL ...

I had the same experience, when I lived in the UK.  I became extremely depressed, questioned my own sanity and entertained ideas of committing suicide.  Fortunately, later I was prescribed Gabapentin, which helped and have since been diagnosed by a neurologist here in France as a sufferer of CCH.  It certainly doesn't help much when a member of the medical profession, from whom you are seeking help, tries to fob you off by suggesting that you're imagining the pain. No wonder CH is nicknamed 'suicide headache'!