Hi All,
Long time ago I was here. My latest news was the ONS stimulator operation which did at the end not work for me.

I have approximately 8 attacks a day now. I counter them all with imitrex injections.  The injections are not helping that fast anymore but more concercerning is that it is difficult to eat. I blame the injections. More people here who experience weight loss etc. if you use imitrex a lot?
Greatings

Wow,  eight attacks a day must be knocking you about something fearful.  It's also not the least bit common for CH so it might be worth casting your net a little wider.

The first thing springs to mind is the possibility of a second headache disorder to go along with your CH just for the extra fun of it.  Quite a few of us have more than the one headache type and the likes of Chronic Paroxysmal Hemicrania spring to mind.  Very similar to CH but shorter hits and a dozen a day is common.

Happily they're also very easily treated.

The second possibility is that you're massively over-using your Imitrex shots and are getting rebound headaches  -  that is,  the cure is causing the disease.

Might be time to check in with your favourite health professional to see if you can get this sorted because that sort of trauma is no way to live a long and life.

Please let us know how you're getting on because we care,

Brian down under.

Globi,

Sorry to hear the ONS operation was not a success.

Have you looked into non-invasive stimulation?

GammaCore is worth doing a little on-line research on.

Peter.

Hi Brian,
I've discussed other types of headache with my specialists. They all agree it is typically cluster headache.....but a lot of attacks. 
I do think an injection triggers another. It also can fasten an attack when you inject early. 
We are going to look again at the old ONS setup. Maybe resetting the wires at the nerves. And we are starting again with verapamil. 120 mg 2 x day for starters. Next to this I found out I have a D3 deficiency (BATCH!) <15 and it should be 50>. So I get treated for that as well. Let's hope for the best.

Hi Peter,

I'll have to read more about it. It is non invasive....that is good. My neurolog is also looking for a temp solution in a GON injection in the neck. Who Knows......

For the eating disorder I am getting a supplement drinkable food + D3 5600. Attacks are down to approx 5 a day and they are manageable. Let's hope it stays that way. Just day 2......

I went to see the dietitian friday. According to him..... there is a strong connection between imitrex injections and food disorder. He is 'treating' two CH patients with compact protein drinks + fibers and they say it helps. I am now at two attacks a day (night) so there is something going on. But I still cannot eat normal solid food. According to the dietist I probably need extra drink food for a very long time. I disagree. So does my gp.

Here's a fairly comprehensive list of Imitrex side effects

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And the closest it gets to eating disorders is a mild chance of tummy ache or diarrhea. 

Just out of interest,  does your dietician also sell you the protein foods he recommends you take?

It is all covered by my insurance. But he is a bit of a salesman. It is easy to subscribe things like this. It's at the end not really healthy and i am planning to stop taking this food asap.

Thanks for the good link.

Globi wrote on Aug 21^st, 2022 at 6:05am:

Thanks for the good link.

You're welcome,  and there are many other links that provide pretty much the same information,  with a distinct lack of reference to eating disorders.

If solid food is the immediate problem then it's easy to make seriously nutritional soups and stews at home  (cheap, too)  and also consider congee to which you can add anything you please.

This will at least keep you healthy and regular until a better method presents itself.

Try increasing verapamil until CH stops and then taper back down.

hi, wow with my 15 years experience as a chronic cluster head I do know I was told not more than 1 injection in 24 hours and no more than 10 per month as it can cause a stroke.
Imitrex also causes major rebounds. I do know some people split the injections on half.
Sounds like your having more rebound attacks.
I know its hard. I used to get hit 5 to 8x a day. Record being 13. Its a hard life. There is alot of info here and on clusterbusters. Pain Free WIshes