Hi all, I'm Sasha.  I'm new to the board and new to cluster headaches.  I can't remember having any before I was 28, when I had a headache wake me up at 3am for a week straight.  Never had any pain like it, went to the doctor and after a couple of days of steroids, migraine meds and blood pressure meds, I was ok.  The doc was reluctant to say it was cluster headaches because I'm a woman, but after an MRI, he confirmed it.  That was about 3 months ago and now I'm afraid I might be about to start another cycle.  I just have this feeling...starting with a dull pain in my neck, always the left side.  It's the same way this other one "started".  Not like a muscle ache...just wondering if anyone else here "knows" when they're coming on?

Are you keeping a diary with the times/durations/kip levels of the hits?  Oh, Yes. many years worth of logged entries.
Taken the cluster quiz on the left?  Yes
Taking this info as well as some other CH related info may help your Neuro in their diagnosis.  15 years is a long time with no proper diagnosis. I have a diagnosis, it's the treatment I am still working on.  Tried lots of things - have a diary/log for everything, had an MRI, the whole 9 yards.

Zeitgeist wrote on Apr 10^th, 2007 at 5:19pm:


You have an EXCELLENT resource in Oslo!!  Svenn!!

Will I see and meet you in Trondheim in September?  There is a big headache symposium then.  I will be there.  You should go.  A lot of good information, and fellow sufferers to interact with.  Meeting other clusterheads is a MUST!!!

Chuck

Welcome Sasha and Svenn!! 

Hoping your cycles end pretty soon!!

if not...we are here to give a helping hand and an understanding  ear .   

DannyV wrote on Apr 17^th, 2007 at 10:04pm:

The symposium in September, is in Trondheim, Norway.

There is a MUCH closer gathering in July, in Richmond, VA.  Scroll down, and you will see a section dedicated to RichCon.  Check it out, and join us!!!  There is nothing like meeting fellow clusterheads!  Lots of good people to meet, and information to learn at the lectures.

Chuck

Hey Gang/Sufferers,


My name is Chris and found this site this morning after one of the MOST PAINFUL and DEBILITATING cluster head aches I have had thus far! I was ready to bang my head against my garage floor as opposed to putting it through a wall which I have done before.

I am 38 and have had these for as long as I can remember and always diagnosed as having migraines. Till. . . I actually found a competent DR. who said "You have cluster head aches my friend." It was ironic because I was picking up my Imitrex that same morning and the pharma. said it sounds like cluster aches.

The head aches come on like someone just shot me in the head! However I rarely get woken up from a sleep because of the meds I take for bipolar (I could sleep through a bomb blast). I also take lithium which does SQUAT too.

Sex. . .FORGET IT! Any type of physical exertion is also out of the question. As of now, those are the only 2 triggers that I know. I can't pinpoint any others because they come on so fast and so hard that I can't remember what I was doing pre-head ache.

I've been hospitalized twice for these and the DR's thought I was looking for drugs till I finally  grabbed him by the lab coat, brought his ear to my mouth and told him "I am not looking for drugs and find out what is wrong with me or I will make sure you do not walk without a limp again." All I want is relief.

After that, besides getting a new ER. DR. and quickly too, I got and MRI and cat scan. They said it was nothing. What get's me is an ER. DR. looked at my cat/mri scans and not a neuro.????? That's like me looking at someones head and trying to decide what kind of hair cut I should give them (to a lesser degree of course) . . . I have not a clue. They did give me morphine which did SQUAT!!!

This last round I was given percocets and they helped a VERY little. I am also pretty tolerant of pain meds because of a VERY broken leg and skin grafts. I was on pain meds for almost 9 months.

These attacks last for weeks if not months, With a day or 2 of total relief in between. But always scared to make the "wrong move." If you all know what I mean (which I am sure you do)!

Pain mostly effects the left side of my head, with the droopy eye, nasal congestion, teary eye(s) and sometimes, what feels like paralysis of the left side of my face.

I think that that is it.

At witts end guys.

Chris

Welcome to the board Chris, sounds like you have a full plate. Curious as to what your dosage of lithium is. Lithium dosages for most other conditions tend to be at  alower rate. Just for comparison, I'm male, 47, weigh 190 pounds, and take 1200 mg a day when on cycle. It's a very effective preventitive for me. Might be worth running by your doc. Again, welcome to the board I sure hope you can find some relief soon!

Guiseppi

piddle, i posted my intro a a sepreate post, "horse of a diff. color". my bad.

I just read my post, and it sounds like I'm saying I'm 21 years of age.................... I wish !!! I'm 41 years old and have been suffering with these dam headaches for 21 years !!! sorry for the confusion
Rosie

Hi all I'm a newbe I've been getting CH for 27 years 17 untreated. I used to smoke pot cronicly. about  24 weeks ago I quit almost as soon as I quit the CH stopped.I thought I was cured for over 12 weeks not even a sign of a CH Then all of a sudden as fast as they went away they came back.And boy o boy did they come back up to 5 a day now. To make matters worse my insurance company decided they were not going to pay for any more Imitrex YAH.I called them yesterday they told me I had two more left on my perscription and I could have them if I wanted to pay for them $760.00. There must be a small markup on those ya think???? Well I know this don't help my pain but at least I can get it off my chest to people who understand me thanks for listening

Hi Johnny!

Sorry to hear you are going through this, but the moment you give in to the beast , she wins!!!

Have you tried Oxygen? It is the first thing most of us use as an abortive and works a high percentage of the time.
Talk to your DR to see if He can prescribed it for you, if He doesn't there is always welders Oxygen (check out for topics about this type of Oxygen, plenty of guys use it and its a lot cheaper).

There are other preventatives other than prednisone, I heard about Topamax and Lithium. I personally do not take preventatives but I take Cafergot at the beginning of my cycle, when the hits are weaker and I have enough time to take it because it comes in pills and do take time to start working.

Imitrex can be found in cheaper versions (look for Sumatriptan, they come in pills and as nasal spray) These ones come from New Zealand.

Of course there is also Red Bull but I do not know if it is safe to take for the sugar content, maybe strong coffee with taurine pills will work for you.

Please do not give in Johnny, This site is great for the information you can get, read, read a lot and ask everything you want and you can also vent if you need to, We are here to help and hear you and give you a shoulder to cry if that is what you need.

YOu will find people here ready to help. Hang in there and be strong, YOu can beat the beast!!

H i all,
I'm Jimmy,
I am 45 and just saw a neurologist for the first time about a week ago. She told me I had cluster headaches about five minutes after I walked in. I had never heard of them.
I've had headaches for about 5 years and attributed them to breaking my nose several times. Had surgery for a deviated septum and scar tissue repair last year in March, because they were lasting 2 or 3 hours. They were gone for a year and I thought I was free.
Got hit again in February this year, saw the nose Dr. and did a few weeks of steroids etc.
Shortly after that I got slammed with the wickedest bout I've ever had. 3 days of no sleep and then for a kicker on the fourth day a K 9-10 that lasted for 5 to 6 hours. I almost went nuts. Called the nose Dr. after 4 hours or so and when I was told there were no openings, I literally burst into tears. An appointment miraculously opened. I had to call my wife (who has always been there for me), still crying/sobbing uncontrollably,  to come home from work and take me there. What a drag.
Any way by the time she got to me it was all but gone. The Dr. told me the sinuses were good and not to take so much tylenol (10 or 15), because it'll wreck my liver. Like I gave a crap at the time. He gave me Hydrocodone and a month later I saw the Neurologist. She gave me Imatrex pills, Naproxen, and said take the Hydrocodone if needed. I have only fealt the need to use them once since then, but I took all three and they worked in about fifteen minutes. I guess at 3:00 AM I just didn't feel like experimenting or having to tolerate an extra  15 or 20 minutes. I will next time.
I am sorry you're here, but I must admit that I am almost ecstatic to find out I'm not alone. I was starting to think I was going mad.
Thanks,
Jimmy

Hey Johnnypatrick, welocme to the nut house. I've been using lithium as a prevent for many years when I go on cycle. My GP had a heart attack too when I told him my neuro wanted to try it. It does take a half dozen blood tests when you first go on it to monitor how fast your body gets to a therapeudic level. After 2 weeks you don't even notice you're on it.

I drinks a bit, I like my dark beers and blended whiskies when I'm off cycle. I'm 47 and so far the lithium and the drinking haven't done anything to my liver functions. Compared to other sied effects of available meds I'm okay with the lithium for now. Hoping you have a short cycle and then stick around the nut house anyways!

Guiseppi