Just to give folks an even chance. Since I haven't posted since page 2 of this thread. I have had these damn things since May of 69. Been Chronic since March of 2000. other than hanging around here since Nov-98, I have been known to do a little Fishing and Systems Engineering in the off season @newportnet.com and orcoast.com .
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jonny hopes to look as good as me when he grows up 

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Me and my youngest munchkins Trina  4   And  David jr.  2


Dave

lynnsie wrote on Jun 1^st, 2007 at 10:41am:


Hi Lynnsie!  I am sorry you have to be here, but glad you found us!

You are close to the right area to post.  This is the right section, but start a new thread.  Tell us your history, describe your hits, tell us what meds you take, who you have been to see (doctors) and what they said.

Then ask any questions you may have.

We care, and we want to help!

Looking forward to your next post!

Chuck

Hi Alan

I live in Nottingham. Been an episodic clusterhead for 40 years, diagnosed 9 years ago.

I only found this site in April.

Good to hear from another brit although sad you have to suffer the devil.

Mike

Hi there

I'm 45 and have been getting clusters for about 12 years.  After numerous mis-diagnosis from various GPs I researched my headaches online and went to my USELESS doctor with the results of my research, i.e. that I had many of the typical CH signs/symptoms.  His reaction?  "You people and the wretched internet." after which he prescribed Nurofen, not even bothering to look at my notes/print-offs etc.

I persevered with him and eventually he prescribed prednisone (after telling me that there was no way he was prepared to prescribe O2 - "we don't have the budget and there are plenty of people with more serious conditions than you". So I went private.

I met an excellent doctor who LISTENED and then went online while I was there and immediately set me up with an appointment with the London Migraine Clinic (and the splendid Dr Blau).  Verapamil was prescribed and it sorta works...

I'm now about to do battle with the NHS again and hopefully will be deemed deserving of some of their budget for O2.

That's the headache story, on the 'who I am' side, I'm a graphic designer/writer/photographer. I have 2 exceptional children, one a sub editor of 19 and the other a rock musician, 21.  I also am lucky enough to have a very kind, strong girlfriend who has been nothing but supportive and sympathetic. Last night, after a particularly nasty kip9/10 I noticed that she was crying very quietly; the headaches take their toll on everyone, not just me.

Nice to meet you all, I've been reading post here for a while, thought it was time to join the forum.

I have yet another headache steaming in now so gotta go!

Regards

Buzz

Hello Brits!
I'm an ex Londoner (born and bred) who is exiled in Nottingham. We often have meet and greets in London so if any of you fancy coming along anytime keep an eye out on both the general board and also the meetings board.

There is one this Sunday if you want to come and join us dain bramaged freaks  ;

You'd all be very welcome!

Helen

Hi, I'm 20 and I've suffered for for about 4 or 5 years.

My clusters usually occurred in the fall and winter, but this summer they've been going really bad, worst than ever.

I was taking 360 mg of Calan and had to almost stop because I was unable to train properly for football (I wasn't able to completely exert myself without being in extreme pain form trying to push myself during conditioning).

It seems I can't take naps because I'll usually wake up 20 min. later with a cluster.

I feel relieved finding this site and hope that maybe it will help.

Welcome to the board Bud, and while i agree it's awesome talking to people who do understand, there is SOOO much more to this board! For the night time hits, you may want to try melatonin. The night time terrors were never a real problem for me so I never had to try it but many have posted success with it, taking it just before bed time.

Do you have oxygen yet? Your gp can prescribe it while you're waiting for the neuro rferral. Hopefully the prednisone is buying you some pain free time while you wait for your neuro....but that sounds like a LONG time to be oj prednisone. If you can score some 02 it needs to be started at the first twinge of a headache, using a Non ReBreather mask, at a high flow, up to 15 LPM. (Nasal canulas are worthless, you can't get the pore 02 you need)

Welcome to the asylum, start reading like a mad man you will have to be your own advocate in your treatment. Most docs are just clueless on these things!

Guiseppi

Well, I finally figured out how to do the photos, so I guess I should formally introduce myself.  My name is Jon, and I pretty well fit the classic description of the classic CH'r.  I started getting these in my late 40's.  The first scared the crap out of me, but then it was over.  Then another the next night.  I was xrayed, poked, prodded, mri'd, got prescription glasses for reading, had all my wisdom teeth yanked out, etc.  I got referred to a neuro who had me pegged with migraine, even though I disagreed with him on almost every one of the symptoms he described.  (My mom had migraines, so I am familiar with those).  Migraine dope didn't work.  The next cycle he tried different migraine dope and it didn't work. 

Two big events happened in this story.  My old GP (not the neuro!) finally did a little reading and said it sounds like CH.  He set me up with oxygen with remarkably good results.  Second, my kid's bartender referred my to this (new at the time) site.  Thanks to all of you who got me through those bad times!

My old job had me traveling quite a bit (I learned three words on three trips to Finland), but travel was unbearable during a cycle.  I got a new job.

I was a heavy smoker.  I didn't have a monkey on my back, I had a Diane Fosse study group.  But I was loopy enough during the last dope session to quit smoking without even noticing.  Gained 40+ pounds, but went PF for 5 years, and got up enough nerve for a couple travels (photos are Dublin and Shanghai).  I heard about a new oompah band, so I bought an old accordion and taught myself to play.  I also play some serious music, but pay the bills with a good day job.

Jump to the present - the cycle came back this year almost to the day of the previous ones.  So They're back, I'm back.  It put the dampers on the social life for awhile - didn't go more than ten minutes from home for a couple months.  I had to tough this cycle out cold turkey (finagled some O2 late), but appreciated your support!  I've got a neuro now (2 days after the cycle ended), and we have laid plans to meet next spring.

In the meantime, I intend to live life to the fullest and enjoy the PF times!

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They're hard to find, I'm usually on the other side of the camera.

my name is phili h- 55y/o married male, 54y/o wife/supporter laura,22y/o son/supporter jamie, 19 y/o daughter/supporter micaela............i am a recovering addict/alcoholic  sober over 25 yrs . my wife is sober longer than me. my 2 kids have a few yrs sober each.........we are rich in family,recovery, miracles and love....just not material wealth.....anyway , i've had ch's - chronic from the start for about 5 1/2 yrs... diagnosed accurately after 6-7 mos.  i've been on more rx's and have had more md's than you can shake a stick at !!!!!!
    i've had very poor results with most meds. in november 2006 i died 3x's in 1 day , from a fatal overdose of blood pressure meds....norvasc + toperal and a very high dose verapamil............mds said this cocktail was ok and these meds worked on different mechanisms and would not be a problem........... they were wrong....3 weeks later my  pulse hit 20 ,then stopped.......... revived 3x's , coma ,double pneumonia and a 3 week stay in hospital , i had to seek a medical support team........... i'm now on prednisone  - 90 mgs down to 5 mgs over 3 mos -this will continue , wellbutrin 150 2x's daily ,trazadone 100 mgs for sedative effect....i now can get 5-7 hrs of sleep most nights , o2 ,coffee , red bull/amps and meditations......
     this is a great improvement.........................
i found this bd in '03,joined 8/04...thanks 4 being here..

   While waiting to see my Neuro, I contacted my local Dr. office about getting O2, as I have read good things things here.  Five days later, I got a call back from them.  They want the info that I have.  They know nothing about O2 for clusters. 
    Keep posting.

Bud

Hey there fellow Clusterheads. My name is David. I'm 48 years old and have been experiencing these fun little Thunderf@#*s for over 30 years now. I'm in the midst of another excursion to the limits of my tolerances and my poor wife stumbled up this AWESOME site and told me about it. I first started reading the stories and couldn't help but tear up. Finally a group of people who know and actucally feel what the hell I go through for real. What a releif!
I see a wealth of information and support here.
Well, I hope to be done with this trip soon! I'm using an herbal remedy to abort. Has been working well as far as keeping the attacks as short as possible. Usually 10-30 mins, sometimes longer, sometimes shorter. Sure as hell beats hours. I still get multiple attacks on the same nights though. O2 might be a good thing to try and the H2O therapy looks like another great idea.
Bye for now. If I can ever be of support or help to anyone please feel free to shoot me (an email). Ciao for now,
David
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