Hi,
Apparently I started an account 3 years ago, then forgot about it. I remembered the board though, so when the smelly stuff hit the fan this time around, I figured I'd register and got a surprise. Tried to find some old posts from me, but apparently I just lurked about as usual.

I'm 35 years, got diagnosed as 16(?) year old - back then it did not seem to exist any treatments at all. They tried some betablockers that didnt help. I got frustrated with the doctor and stopped having any contact with them at all.  

Somewhere in the span 20-23? The headaches started abating, getting more and more infrequent. And finally they stopped altogether, it took a long time before I trusted them to be gone, but finally I did.

Then they popped up for a month or so at 26. When they came back I thought I would cry. Maybe I did, I don't remember. I never considered going to the doctor, because I already new they could do nothing.

I realised vigorous excercise helped during some onsets, but only in the start of the cycle. Later on it did not matter. I realised that dunking my head in extremely cold water and keeping it there helped a bit, but only in the start of the cycle. The same with cold showers. Anything that chilled the body seemed to help somewhat.

That episode only lasted for a month, so I quickly forgot about it. Then it came back at 29, 32 and now 35. All episodes up until the current has been 3-4 weeks discounting ramp-up and stray headaches after.

Now I have children and need to work for a living and the current episode terrifies the living daylights out of me. I mean, it was one thing when it was only me. I could be on the street - with the headaches I could have cared less - but now I have a whole family depending on me and that really adds a dimension of scariness.

So this time I actually did some research, I have contacted a specialist and have a scheduled appointment. I also found that there has been some progress in ways of treatment. They sell these Zolmitriptan-based meds over-the-counter and I bought one to try and it actually worked as long as I take it early enough. They are insanely expensive, but they did work for me. I mean...work and work... I still feel really bad and it hurts, but it takes the edge of it, which means I recouperate faster afterwards. So I can work and so on. Still I am not happy with the treatment it is too weak and much to focused on managing the attacks instead of solving the underlying problem.

So that's my story if anybody actually had the stamina to read the whole boring rambling. Let's see if I am a permanent resident this time.

What's up dude

Hang in there.

First things first...don't let them get you down. It's just pain ;)
You're life shouldn't be any less productive IF you develop truly good coping mechanisms. I haven't let these interfere with my career since the beginning hardships subsided.
To me that is more important than any abortive or preventative out there! Without we are destined for depression, increased anxiety and will certainly go off our rockers.

That being said, obtain a decent abortive.
Then obtain a fantastic abortive....Oxygen!

It'll be like your girlfriend.

I have just reached the 6yr of a chronic state and personally have delat with these better at times than others...
When I started this round in 2004 I was an anxious mess and let it get the better of me.
this place helped me get my shit together.
By 2006 I was off all meds and have just used oxygen for 99.9% of attacks. If desperate I have used a jab of trex or zyprexa.
In the summer of '07 I did go inpatient for a week for a break, which did help me achieve some level of humanity again as I hadn't slept more than 2hrs of broken sleep for a couple of months.
Since I have been on a tear....
The pain sucks but we deal.

My daughter dresses up my oxygen tanks as if they were dolls lol.

Life's good and you have a family here so you will be fine.

Keep a positive mental attitude and you shall be fine.

Be well

E

Good article to get back up to speed.

 
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]

E-Double wrote on Jul 23^rd, 2009 at 4:52pm:

What's up dude Hang in there. First things first...don't let them get you down. It's just pain ;) You're life shouldn't be any less productive IF you develop truly good coping mechanisms. I haven't let these interfere with my career since the beginning hardships subsided.

First of all, thanks for the positive outlook/response, I know you are right - nothing gets better by sulking. In a way having kids make things different. True I am more afraid of not coping, but on the other hand there is no longer an option to quit. That is good in a perverse way.  

Given that my variant so far has been episodic, after the initial 4-5 years I have to realise that so far I've had it easy compared to others. However, I do remember how I absolutely screwed up school during those years. I remember around wednesday/thursday I couldn't even get up from bed. Then I stayed home with the pain and slept away all the pain-free hours, to try to get things together to monday morning. Luckily for me we have some sort of test you can take and still get into univeristy even though your grades are not up to par. And mine where abysmal.

So I guess it's just that old remembrance and fear that comes back to haunt me.... but you are right. I know you are. ;-)


Quote:

Then obtain a fantastic abortive....Oxygen!

Yes, I understand that oxygene can be good. I've checked around and I do believe it is available in sweden as well. I will absolutely keep it in mind when visiting the doctor.


Quote:

By 2006 I was off all meds and have just used oxygen for 99.9% of attacks. If desperate I have used a jab of trex or zyprexa. In the summer of '07 I did go inpatient for a week for a break, which did help me achieve some level of humanity again as I hadn't slept more than 2hrs of broken sleep for a couple of months. Since I have been on a tear....

Sorry, my english i so-so. What's inpatient? ..and what is "been on a tear?" Basically what you are saying is that the oxygene works for you but you still have to wake up with the crap, manage the attack, then you need to get to a point where you can go back to sleep?

How long time does it take from waking up to being able to fall asleep again and how long are the attacks? Thankfully, I have not had nightly attacks yet in this or the last episode. Last episode the came at 23:30 almost on the dot. This time they are going heywire. From 0830, a common time seems to be 1330 and also 1900-2000. Today I had the latest so far 2130, but on the other hand i got one at 0900 as well. So that is new to me, figure it might stabilize - I am still in the beginning.


Quote:

My daughter dresses up my oxygen tanks as if they were dolls lol.

Yeah, kids are great for bringing joy to almost any situation.  :)
My youngest is about the only thing that can make me smile the hour after a "session".

I'm sorry for some of the message getting lost in translation.

In-patient meant hospitalized.

"On a tear" means doing wonderfully, not letting anything stand in my way.

We have bretheren in Sweden.

Make mention of that in a seperate post maybe in the Gatherings section.

I'm pretty sure that Svenn is from Sweden and how nice it would be for you to have a local or relatively local "brother" who knows exactly what you go through.

Best of luck

Bob Johnson wrote on Jul 23^rd, 2009 at 5:02pm:

Good article to get back up to speed.

Thanks. That was a good article. I've been doing a lot of reading these last days and I think I have a better grasp of things now.

From what I've read to me it looks like something is fishy with the hypothalamus. However it does seem like there a great variety in how it is fishy.

I've found articles suggesting that the nocturnal lipolytic metabolsim does not work as it should. So does that mean that CH patients also often are fat? Given the photographies here it does not look like it.

I've found articles that suggest that it is testorone deficiency. However, the same article pointed out that only some individuals got help from testosterone supplements.

I've found articles that suggest that depression is common. Does that mean that the serotonine production is affected, or is it just because CH's are in so much pain?

I've read that melatonin might help - serotonin converts to melatonin. So in essence a deficiency in serotonin could cause a deficiency in melatonin? Thereby causing a circadian rythm malfunction?

Would that mean that for example simple SSRI's or some other elevation of serotinin would be helpful?

Has anybody ever done a full hormonal checkup on CH patients? To me it looks like the whole hormonal system is broken, then it be break in different ways in different people.

Has there been any attempts to treat CH with hormones for long-term help? I mean if they can surgically go into the brain and meddle, they should have tried to meddle from outside as well?

Has anyone here dug deep in all these papers and/or know the medical stuff?

Welcome.

           My name is Bill and i get the clusters too. Sorry to hear you got these god awful headaches too.. But on the other hand im glad you found us. I use 02 as well, and can bust a cluster in about 5 minutes. Give it a try.

                                 Coach Bill

Figured I'd post and write what happened this time.

I got an appointment with doctor. Waited for 5-6 weeks to get to see him. Had 2-3 episodes a day, but on random times (very odd for me!). Anyhows, they burnt down and faded and I figure I had the last "real" one the day before I saw the doctor. So now I am painfree again, hope it lasts 3.5 years again.

I got meds this time on prescription so I can just call! to get them renewed in 3.5 years. I do not have to visit a doctor.
I got cortisol, calcium-antagonists and zulmitriptan injections. He said I could get o2 if I wanted, but given the beuracracy and safety issues and my periodicity he recommended me trying the above set first.

The annoying thing is that I used otc zolmitriptan to manage the pain while waiting for the appointment - but that cost isnt covered in the "highcost" protection. So I spent $750 on those 5 weeks. Thatsucksabit.

Anyways, I figure I´ll try to stick around this time even if I am painfree.

Go ahead and do the paperwork to get 02 so you'll have it the next time the beast shows up.  Most here who use triptan injectables (Imitrex in U.S., Imagran in UK) use 02 to abort most of their attacks and save the triptans for the attacks the 02 doesn't reach . . . and it's CHEAP, easy, and no side effects.  I can abort a hit in minutes with 02 if used early-on in the attack.

Re the safety issue.  Do you drive? Pump your own gas? You don't smoke when doing same, do you.  When you use 02 at the high flow-rates we do 12-15-25 lpm, you can saturate your clothes with oxygen . . .SO . . . you don't smoke while you're using it, and wait a few minutes after you've aborted the attack before you light up (if you smoke at all), to allow the 02 in your clothing to dissipate.

Keep reading . . . keep asking.

   Be Safe,

     PFDANs


      Richard