Hi my husband has suffered with cluster headaches for about 4 years now  . He has been put on all sorts of tablets but nothing seams to work. He has the zomig nasal spray but this does not stop the pain. At the beginning of the year the neurologist gave him a nerve block injection and he went from 2-4 debilitating cluster headachs to none for four whole weeks (of utter bliss). after this they came back and when we went back were told this doctor has left and no one else there was qualified to do the injection. Our usual GP will not refer him to a neurologist I found that can do this injection even though I begged in tears on the phone to please please help as im worried he is on the edge. The tablets he is on at the moment are Indometacin but as yet they are not working. Has anyone had any experience of these tablets? have they worked for you or some one you know? I have just been reading about vitamin D3 and fish oil as a preventative does this work? also oxygen does this work? how do we get oxygen? any advice would be much appreciated my poor husband cant take any more and im getting more and more depressed with 3 young children to look after on my own.
Thank you

You sound desperate - sorry you had to find us but glad you did. You'll find plenty of help and advice here.

Indomethicin will not work for CH. Neither will painkillers - not even morphine. Your husband MUST see a neuro if he is to be properly diagnosed and treated. He should have an MRI scan too, to eliminate anything sinister. If your GP won't give him a referral then you should seriously think about changing your doctor.

As for treatment, there are preventatives such as verapamil which have huge success. Also there are abortive meds which will work directly on the pain. Sumatriptan auto injections are absolutely brilliant and will abort the worst headache in 5 - 7 minutes. Sumatriptan comes in nasal spray and pill form too although the pills are next to useless as they take too long to get into your system.  Oxygen is also fantastic but only if you take it correctly. You must have a flow rate of at least 15 litres per minute (preferably more) and a non rebreather mask. If you get either of those wrong it will not work. Your doctor can prescribe it for you although to be honest your doctor doesn't sound too interested if he won't even do a referral. To be honest most of them don't have a clue what CH is or what to do about it. That's why he should send you to someone who does. If he had just 5 minutes of this pain he would be looking for a specialist soon enough.

Are you in England? If so contact OUCH.co.uk. Hopefully someone here will give you a link. Phone them, and they will give you a list of headache specialists/hospitals and (I may be wrong here) I believe you can get appointments without a referral.

CH is caused by a  blood vessel in your brain which dilates and presses on the trigeminal nerve. Sumatriptan and oxygen are both vasoconstricters, and will shrink the vein back to it's normal size, thus taking pressure off the nerve. You can only use 2 injections per day so I save them for when I'm out ( I never leave home without them) and use the oxygen at home. 

So my best advice - Insist your doctor does the right thing,it is your absolute right to be treated. If he won't then change him., get a neuro and diagnosis, get an MRI, get sumatriptan and oxygen. The CH will never be cured but your husbands life can be so much better with the correct treatmen.

Thank you for being such a good support for your husband. We all need support and understanding. Keep coming back here and you will learn more about this thing than any doctor knows. And you'll make new friends all over the world. We all understand only too well what this thing in our heads is like. Let us know how you get along.

Hope this helps
Maz.

bubbles 26:

My husband has also had CH for the past (4) years consistently and was put on Indomethacin recently as Verapamil and other meds do not work for him.  He is chronic and hard to treat.  As mentioned, Oxygen administered properly is great abortive. 

Indomethacin did not work for him, but Lithium is.  He's been started on 300 mg. twice/day and is starting to see a reduction in number and intensity of H/As and they have been really bad (4-8 per day) since the first of this year (worse than the past 3 years).  

Interestingly, although they may not work for some sufferers, the Sumatriptan pill (100 mg.) has helped my husband have less CH attacks recently, (as in more time between attacks) while the Lithium has been building up in his system.

He has only been taking the Lithium for about a week and a half, so time will tell if it stops them.  For now, 2-3 CH per day at KIP 5 is a blessing. 

Also, what works for one sufferer may not work for your husband.  For me, that's one of many things that makes this medical condition so frustrating.  To feel like you're trying so hard and it's not good enough to stop the "beast" is almost more than I can bare sometimes.  You just have to keep trying different things til you find what works best for him - that's what we're doing.

Best of luck to you.  Sorry you are going thru this.  This site is a huge blessing with lots of good info and people who know what we are going thru - tell your husband to hang in there - he is not alone and neither are you.