Mother and Brother suffer cluster headaches

[Hopkinssmith123]

I am on here as my mother and brother suffer with cluster headaches and my mother has had them for over 40 years!!

She has finally seems able to control them by taking high flow oxygen, sumitriptan injection and steriods in the middle of a cluster!!

I feel after it taking my mum all this time to control them it is only right to spread the word(so to speak!!) as hopefully it will stop someone if only one other person suffering for so long!!

[strawb71]

Hi, I also suffer from cluster headaches. It has taken ten years for a correct diagnosis, but having the Sumatriptan injections is almost life changing for me. I'm trying them out but my doctor has offered oxygen if I feel I need it, so I am finally on the right track. I just think that with the condition being so rare, GPs are ill equipped to spot and treat it, which is awful for sufferers....

[Hopkinssmith123 in reply to strawb71]

It really should be taken much more serious, I know when my mum or brother have a cycle it affects their life so much, lets hope they push the injection much more. I think they don't due to the cost, I know my mum has been told by the pharmarcy"do you know how much they cost".!!!

[strawb71]

It is awful, I have just come out of a six week cycle. It was absolutely awful, quite frightening. It's shocking that the pharmacy has said that... Treatment should be based on need not cost.

[Hopkinssmith123]

I quite agree!!!

[Hopkinssmith123]

Do you use the oxygen? My mum and brother use it if they have used the injection limit , both say it takes more time but does do the trick. Worth using as a standby at least, you can use as much or as little you need.

[mustajabak]

The oxygen works but only to postpone the attack for it to come again at all cost. I used to postpone the attack by oxygen but was sure that it will take its toll.

Finally I quit using oxygen as the no. of attacks that are to come in the cycle will come anyway and there was no use of oxygen as it just delays my cluster headache so I let it happen as I know I can not hide my self from it. I get it during the month of May to July every year and rest of the year I am just fine> The time is closing by and I know after 2 months the attack will come so I will try this sumatriptam and see how it works on me. Please pray that it works as MAAAAAAAN the pain is Aaaaaaaaaoooooouuuuuuucccchhhhhhhhhhh

it kills really

Love you all sufferer of this ******* cluster headache

[Hopkinssmith123]

The sumatriptam injection is a must according to my brother and mother! But you can only take 2 in 24 hours. So the Oxygen is good to postpone it over to the next 24 hours. Steriods do seem to help too, especially at the peak of the clusters!

Hope this is just a little help.

I know how terrible they are even thought thankfully it's not me that suffers.

Good luck