Yes, Spring & Autumn is common for CH, myself included.

Okay, here we go: once more into the breach, dear friends! Have you been diagnosed by a competent headache specialist? You do not say so. If you have, what meds were you given for prevention and abort? This might tell us a great deal about your doc and also steer us in a good direction for sharing methods and meds that do work. We might be able to help, we can certainly listen and empathize. But you and we both need more info. God bless. lance

wimsey1 wrote on May 17^th, 2013 at 8:34am:


I was diagnosed by a neurologist a long time ago. Then I was diagnosed again after moving up north. Frankly I was just saying hi (which is kinda common with message boards and such).
The fact that I have a cluster headache is in my medical record up to the point that when I had my tonsils removed there was a nurse standing by with oxygen when I woke up from the anastethic. I did not know that it could bring about an attack, but apparently the hospital did...

As for the treatment: I have tried Imigran (Sumatriptan) injections with no solid results. I have tried oxygen (but only at hospitals), that worked to a degree but.. It seems like if I get "above" a certain treshold, literally *nothing* can stop an attack. In the beginning they gave me all kinds of painkillers (useless crap frankly) until I demanded to see a specialist.
He put me through CAT scans and whatnot and during that process I got an attack in the middle of a talk with him. After that everything seemed to be settled...
The only thing that works for me it seems, is Coke (the soda mind you), which is basically killing me since I rarely drink or for that matter eat sugary stuff. It seems that if I can down half a litre of Coke early enough it will sort of abort the attack in the sense that it will put the attack off for a few hours.

Right now I am at 4 attacks a night and the attacks are typically 40-60 minutes long which does not leave me with much sleep, and to tell you the truth I am afraid to go to sleep. So I have taken some sickleave and is just hoping it will pass soon. Historically my clusters don't last much longer than 2 months and then I get at least a year off, so I think I am a lot better off than most that suffer from the same.


I hope this settles that in this "Getting to know ya" forum.

-T.

Please don't take offense to Lances' question! We are deeply concerned with helping people alleviate pain...only to find out there was a far more sinister mechanism at work then CH. By our well meaning intentions of giving you methods to stop the pain, the "mechanism" causing your pain continues to grow until by the time it's diagnosed it's potentially fatal. A concern we wrestle with,,,including with each other!!!! On a regular basis.  Clearly you've done the footwork to get an accurate diagnosis so we don't have to sweat the scary stuff.

Oxygen. For me oxygen is only effective if I get on it at the first sign of a headache. If I wait until the headache is established, basically anything over a 5, it's not going to work for me and I have to go with a trex injection.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Take a look at the above link and make sure you're getting the maximum benefit out of your oxygen. Small tweaks on HOW you use 02 can bring out dramatic improvements in it's ability to abort attacks.

Since you're getting creamed at night, consider trying melatonin. An OTC sleep aid available at whole food or vitamin stores, I think even Wal Mart has it now. Start with 9 mg about 30 minutes before bed. Effective dosing varies greatly by person with some going as high as 18 mg. It affects your rem sleep and keeps many sufferers pain free thru the night. There was a thread awhile back that went into the differences between types of melatonin. It was generally agreed that the "good stuff" is:

n-Acetyl-5-Methoxytryptamine.

Some people take a combo of both the immediate release (to get to sleep right away) and the time-release (to stay asleep).

Have you ever tried verapamil as a preventative medication? Still the number one prevent based on track records around here. I stole this from Bob, worth printing out and taking to your doc:

A widely used protocol. Your doc will recognize the source and author:

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).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented


I'll stop burying you with stuff to read. But please also consider the D-3 regimen I linked in my first response. 81% success rate is unheard of in CH treatment. As I mentioned, 3 years pain free myself after well over 30 years of episodic.

Joe

Guiseppi wrote on May 22^nd, 2013 at 4:24pm:


Thank you. I won't take offence it was just weird to me, but after reading the forum for a bit I now see your point.
I may have sounded a bit miffed there

Guiseppi wrote on May 22^nd, 2013 at 4:24pm:


Oxygen is really hard for me to get in a legal way. There are heavy restrictions and I have not wantet to wrestle with the system to get it because I had so little experience with it.

Guiseppi wrote on May 22^nd, 2013 at 4:24pm:


Now that *is* interesting!
I read up on this a little and while it is not an OTC drug where I live (I may have failed to mention that I am Norwegian), it is trivial to get a prescription for it from my doc. I will definitely try this, I am really struggling because of sleep deprivation at this point.


Guiseppi wrote on May 22^nd, 2013 at 4:24pm:


I will bring this information to my doctor at my appointment this coming Monday.

Thank you very much for all the information.

-Tomm.

Tommst wrote on May 23^rd, 2013 at 2:45pm:


Understand what you mean in that you've something you know that works. Although the energy drink may work even better. Only by trying will you find out.

Wow, never expected you to try this out by inducing CHs like this but the results speak for themselves. It is by taking control of things that we get to learn more about how to improve things with CH.

I'm really pleased that you've found an even better weapon against CH that works for you. Now you'll no doubt end up with supplies of energy drinks placed around within reach. Even though it is well over a year since I've had a CH there are still some in my car, by the bed, in the lounge and a backup supply in a cupboard, just in case...