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

What I forgot to add: my uncle takes imitrex too, and his shots relief his pain for about an hour. He has been told not to take more than two shots a day because that's dangerous. Is it wise or even possible to take more shots a day? Are there people that do so and are able to normally live their lives that way?

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. 

Hi Lauren,
your best bet for now is for him to take the cluster quiz
the link is to your left on this board.

Hoppy.

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'?

I have sumatriptan auto injections to abort the headache. ( believe it is a brand name for imitrex). The pain is totally gone in 5 - 7 minutes.

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  :question we are all here to help.

Good Luck, Hoppy.

Thank you for the replies.

I'm sorry, I haven't made myself completely clear.
My uncle has been seeing doctors for about a year now, and has tried tens of medical cures - including the sumatriptan maz has kindly suggested- that all failed.
I've been reading the D3 page and it sounds very promising. My mum is,buying vitamins today and I will definitely keep you updated on whether it works.
Unfortunately my uncle has basically given up and is very reluctant to try, but we feel like it deserves a shot!

Thanks a bunch for the answers.

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.

Oh that would be very kind! ^
We live in Holland, but close to the German border. So suggestions for German specialists are very welcome too!

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

By the way, I wanted to add that the medication you list, lanreotide and somatuline are not cluster headache indicative. Nor do they seem to be used for headaches in general. If this is the best your uncle's doc can do then he has no clue whatsoever about how to treat clusters. Not unusual though. Docs here are pretty clueless, too. blessings. lance

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

By the way, I wanted to add that the medication you list, lanreotide and somatuline are not cluster headache indicative. Nor do they seem to be used for headaches in general. If this is the best your uncle's doc can do then he has no clue whatsoever about how to treat clusters. Not unusual though. Docs here are pretty clueless, too. blessings. lance

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!

Laurens,

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