Hey Folks,

After 3 years the CH is back. pretty much right on queue.... Seems it happens every 3 years. Luckely my Neuro responded well and got me verapamil and O2 immediately. So poppin pills and sucking the O2 atm. Seems this time it is more severe because it started at a pain lvl of 5 instead of building up during 2-3 weeks.

i made the mistake to eat potato chips last night and i got a full blown attack, with nausea and light sensitivity to boot. normally i never have these symptoms. Then i read that E620 and E627 are trigger... well you can add E621 to that list because that was in the potato chips...

Anyway happy there is a place for the clusterheads over here. Been reading up on all the treatments. Seems like it got a bit better in the last 3 years. As i would love to test the LSD/Psylocine treatment ;) and the pepper one. But first i'm off getting some Vit D3 to see if that helps.

See you around,
Ewoud

Hi and welcome  [smiley=wave.gif]
It must be so frustrating after 3 years to find your self dancing with the devil again. The D3 is helping so many people, often after just a few days that it's well worth a try. Don't forget to get the calcium, magnesium citrate and fish oil that goes with it. They all work together. Good luck with it.
There are people from all over the world posting here, and they are the best scource of help you will find. The nicest too.
Stay with us.
Maz.

Hello fellow cluster heads,

Just poppin' in to say that the Devil is quit punctual....

I had it noted in my agenda for early september, but it is back again early.

poppin pills and sucking O2. the verapamil doesn't seem to have much affect atm. need to hit the O2 3 times a night and sometimes once or twice during the day. I just about use a full 200L O2 thing a day atm. Thats kinda new too.

I'll have a check if i still got my D3 and start with that.

Hope you are all doing well.

Cheers,
EWoud

If your cycles are as regular as you say, consider a treatment response which is quick acting and doesn't require you to take/us full time for the other two -plus years.

Verap is the old standby, of course, but using O2 as an abortive has the disadvantages of having to keep the equipment/tank on hand all the time; inconveniende of lugging the tank, etc., and its short effectime life compaed to some of the meds.

For an active cycle of weeks(?) once in three yeaers even the effective D3 treatment consumes your attention and $ for most of the time.

Suggesting sticking with the Verap, when in a cycle, and using one of the fast acting abortives for the relatively short time they are needed. Just easier than being another approach which requires your attention and $ for the majority of time when your head is quiet.

I found this med, as an abortive, has seveal advantages: fast actding, inexpensive, pill, and may be a permanent fix. At least print the following and talk to your doc about it.
========
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

psylocibine works as a relief and abortive for me.

maybe also interesting is 5-meo-dalt

google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=10&ved=0ahUKEwjT_LSx6eLNAhUXM8AKHcVtCyIQFghXMAk&url=https%3A%2F%2Fs3-eu-west-1.amazonaws.com%2Fpfigshare-u-files%2F1611329%2FTreatmentofClusterHeadaches5MeODALT.pdf&usg=AFQjCNFtLHC0NGCdSW6c6i94khjEPf6LyA&bvm=bv.126130881,d.bGs&cad=rja

good luck

Can you explain about the potato chips thing you refer to? when I read what you wrote I just realised that I had a huge episode after having some.....

..it's the monosodium glutamate used as a flavor enhancer that is a trigger for many.... as it is
vasoactive.....comes in many guises (one of the food industry hidden cheats) See list:

Other Names for MSG: The A to Z Guide


MSG Accent
Autolyzed Plant Protein
Autolyzed Yeast
Aginomoto
Calcium Caseinate
Citric Acid (when processed from corn)
Gelatin
Glutamate
Glutamic Acid
Hydrolized Plant Protein (HPP)
Hydrolized Vegetable Protein (HVP)
Monopotassium Glutamate
Monosodium Glutamate
MSG
Natural Flavoring
Natural Meat Tenderizer
Sodium Caseinate
Senomyx (wheat extract labeled as artificial flavor)
Textured Protein
Yeast Food or Nutrient
Yeast Extract


Also beware of aspartame (artificial sweetener) in most diet drinks...same vasoactivity.

Note that many natural foods contain high levels glutamic acid...what msg converts to in body.
E.G. anchovies, tomatoes, mushrooms......you can google for a list of levels in food by simply
requesting "glutamic acid levels in food"....then do a selective diet modification to narrow
down which ones affect you.....

BTW....welcome aboard...glad to have ya...just sorry it need be

Best

Jon

Hey folks,

It's back again waaay early. only 1.5 years have passed.
It started in the last week of januari 2018 and is at its hight now at 17 march (hopefully). If things go as they do, things should get less now and be gone in the next 3-4 weeks.

Thanks for all the replies. I alrdy was only using medication in the ch periods.

Seems to me it is getting more frequent and more active.
I have more attacks and react to more foods.
Also have a double dose of verapamil 2x 120mg a day. Still having about 3 to 4 attacks a night and 2 to 3 during the day. The O2 is still saving me everytime. Although sometimes it takes 30 min before it mellows down.

Just dropping in to use this thread as a journal. For future reference.

Does anyone else experience more frequent and severe CH as they get older?

*Ding* it's back!

two years ago I had another CH period of 4 months. forgot to log that in this threat. luckily it skipped a year.

Sure hope the current one isn't going to be worse. I started getting headaches at night last week and this week they seem to intensify. this sucks because I just started my trial period at a new job and I don't want them to find out that i've got CH.

I think it has alot to do with hormones as my CH started mellow at age of 16 when i had little 10 min headeaches. and the last period in 2019 i was 37. Now i'm 39. Hopefully this will be the summit of my CH and after this it'll be all downhill.   

Just making this log for future ref and scouring the forums to see if there are any new options.

Hope you'll are doing well.