Hello everyone,

I have stumbled on your website by doing research for my uncle, who has been suffering from very severe headaches for a few months now.
Doctor's suspect that this is Cluster Headache, and we would like to ask you (as fellow-sufferers) a few question to determine whether this is in fact the case.

So far he has tried various medications and the only one that had effect was Lanreotide/Somatuline. The strange thing however, was that the treatment was supposed to help for 4-8 weeks, and it DID help, but literally for 15 hours instead.

What we'd also like to know is; are there any other sufferers that get relief by eating? My uncle has the exact same symptoms of waking up because of the pain in the middle of the night, and is able to get himself to sleep -with lots of trouble- by eating lots of bread. That will temporarily relief his pains, and we were wondering whether there are other people that experience the same effect by eating?

Like many other families, we are desperate to help him, and we hope one of you is able to do so!

Thank you very much,
Maartje

Lauren,

Not sure about eating a ton of bread, but when I'm in a cycle low-blood sugar will trigger hits.  I make a point to eat little snacks throughout the day and always one before bed to help prevent this.

There is a tab on the left frame of this website that talks about how to split an immitrex injection up into multiple uses. 

Thank you for your replies!

Hoppy, I took the test and it seems he has cluster headaches. The only fact that doesn't match is that his headache never disappears. It's always there and severe, just even worse at night.

Ken, that sounds similar to what the doctor said.
I will hand him the tip of eating  before going to bed, thank you.

I will print the tips of splitting it up too
Are people that experience more severe headache after the relief of immitrex? My uncle calls is 'punishment for the relief'?

Hi Lauren,
Pleased to hear you took the test, sorry it came up positive.
Your next best line of attack is to get your uncle to see
a headache specialist because it sounds to me he could
be suffering from chronic CH,s and this needs to be
confirmed so he can get on the right meds.Also check
out the link on oxygen again to the left of this page
i'ts the best abortive for CH,s, also check out the D3
Regime here, it has an 80% success rate for becoming
pain free.
Please keep us updated on how he's going and keep
asking  we are all here to help.

Good Luck, Hoppy.

Hi Laurens

Where in the world are you? Someone may be able to suggest a good headache specialist from personal experience. They will need to do the diagnosis as this is something we simply can not give, even if the symptoms sound spot on as there are multiple headache types with similar symptoms plus other non-headache causes. This is why we push for people to see a headache specialist so that people know exactly what is wrong so they can get the correct treatment.

Laurens, I understand your uncle is frustrated and in pain. We all are in pain from time to time, and we are all frustrated. CHs are very hard to manage. It does seem though as if some of the front line meds and interventions have not yet been tried: verapamil, lithium, Oxygen, energy drinks with 1000mg taurine, melatonin, DHE, and more. Read this site exhaustively and take lots of notes. There is help, it is just a matter of finding the right combination. God bless. lance

wimsey1 wrote on Aug 16^th, 2013 at 9:33am:


You are right.
He was told this morning to completely avoid somatuline because of the negative effect it had on him.

Right now we are in talks about laser treatment, because further operational surgery isn't an option anymore. If that fails I will show him your list posted above.

Thanks a bunch everyone, we really appreciate it!