Newly diagnosed, suffering for 12 years, seeking advice/support

[Cdrumond]

Hi. I've been suffering from CHs for 12years, though remissions last up to two years in between attacks. Attacks last every day, multiple times a day, for up to 2 weeks. Was just diagnosed after years of misdiagnosis (migraine). Looking for advice on: prednisone- just started a 21 day course; O2 - how do you obtain? Insurance won't cover?; sumatriptan- have run through all that insurance will cover now. But I feel like sumatriptan makes it worse/more frequent. Does anyone else get that? Does anyone ever use a hot shower during the attacks? It seems to give me some relief or distraction, hard to say which  one. Lastly, those that have suffered for years, does it get worse with age? Do you find any correlation with alcohol as a trigger? I'm 33.

Also just looking for some emotional support, I'm glad to have been diagnosed so now I know I'm not alone. 

- CD 

[CHfather]

Prednisone might help.  It often does.  For many, attacks come back once the prednisone treatment has ended.  But your cycle might be over by then.

Oxygen.  Most insurance will cover it if you have a prescription.  Sometimes you have to fight. You can also do as many do and set up a system using welding oxygen.

Yes, there is anecdotal and research evidence that triptans can lengthen cycles and worsen attacks. You can use less with each injection (assuming it's injections you're using) -- read the file "extending imitrex" in the ClusterBuster Files section.

Hot shower -- some people find that it helps.  Lots of variations, all derived from individual experience -- some hold an ice pack to the head while in a hot shower; some use cold showers; etc.  More than one person has found the putting their feet in very hot water in a bathtub seems to help as much as the whole hot shower.

Alcohol is a trigger for many or even most.  There's a list of more triggers in the Files section -- you might take a look.  Usually alcohol is pretty much an instantaneous trigger; with some other triggers, the effects seem sometimes to be more delayed.

Verapamil is a good pharma preventive for many.  The Vitamin D3 regimen has helped hundreds (also in the CB Files section).  Maybe you want to consider busting -- read about that in the numbered files in the Files section.

You can try drinking an energy shot such as 5=Hour Energy at the first sign of an attack. 

To be perfectly honest, I would say that attacks typically do get worse over time, and cycles typically get longer.  However, (a) there are a lot of things you haven't learned to use yet, and they will make it much easier for you in the future; (b) there are significant developments in possible treatments, clinical trials that will be showing results in the next year or two (including a trial of the effects of psilocybin on CH); and (c) there are enterprising "citizen scientists" figuring things out -- the D3 regimen and busting come out of those efforts.

 

 

 

[urs Brasil]

You are more than half way through dude...