Hi. I'm online and happy to answer your question today.
Thank you for that very detailed post.
After reviewing all the doctors that you have seen, the medicines you have taken I must admit that I agree with your ophthalmologist: You seem to be suffering from very severe cluster headaches.
These can be, as you have already learned, very difficult to treat. I, personally, have suffered from severe headaches myself for almost 30 years and have gone through exactly what you are going through now.......
What can I do to get rid of them? They are really debilitating and nothing seems to help
What is your specialty?
In my case then only thing that broke an attack that went on for almost 3 weeks was breathing 100% Oxygen through a mask. This was not very comfortable but with the oxygen and injections of somatostatin I was finally able to get that episode to break.
I am a retina surgeon but have extensive personal history with your issue as well as many times diagnosing patients with this condition when they feel it is an eye issue.....sorry, I'm not a neurologist.
what is somatostatin?
and how long did you need to breath oxygen? was this something you did in the emergency room?
I agree with your plan to see a neurologist. You may need to go on a long term drug such as a calcium channel blocker or sometimes a medication like lithium...
Also, I am a little leary of using he zomig because of the warnings with SSRI's ...serotonin syndrome . This is rare from what I have read though
No. I got a bottle and used it between patients and all the time at home. In about 30 hours my headache was gone.
I do not want to take lithium. Calcium channel blocker will prevent but can it abort the headache?
It is very, very rare and I really wouldn't worry about that. You have a better chance of winning the lottery!
Can I just get a bottle of oxygen?
No. Ca channel blockers will not abort it.
Intra nasal lidocaine sometimes works. I never tried that one....
How often can I use the zomig nasal? it is not clear on the instructions. Is the intranasal lidocaine a prescription?
Triptans, as an injection, can break an attack.
Yes, I do believe you need a Rx for lidocaine, but to tell you the truth I'm not sure about that one.
Do you agree with the short medrol dose pack? I asked the family practice md I saw yesterday (who looked like he was two hours out of residency) if a longer two week taper of prednisone would help since I seem to respond to the NSAID and he said he did not want to prescribe it because of all the side effects (diabetes). I disagree. what about the oxygen bottle? can I just go purchase one in a pharmacy?
You should not use the zomig more then twice in 24 hrs. If the first dose doesn't work you can repeat it two hrs later.
lol! I remember being two hours out of residency...almost 20 years ago :-)
Steroids will really mess up your blood sugars...so you do have to be more careful then someone without diabetes.
Yes. I think you can get some Oxygen at a medical supply place. Call them and ask before you go over.
Ok Thanks so much for your advice. I am an advanced practice nurse for 18 years now. Ironically I wrote a chapter on headaches for text book about ten years ago. I thought cluster headaches were more common in men. I didn't think I fit the profile. Are we seeing more in women? Also, what do you think would bring this on at this point in my life? I suspect stopping my allegra but I usually dont take it year round
They are more common men. But this statistic really doesn't mean anything when you are the lady who gets it :)
It could be brought on by tons of things....you are creeping up on menopause. Hard to tell.
I dont have diabetes. do you think I should stop the medrol dose pack now? I am on day two only so have not had that much (plus the solumedrol shot yesterday)
Oh. Sorry, I thought you said you have diabetes. No. I would continue the medrol dose pack. It won't hurt anything and it might help.
And it sure is not going to cause diabetes like the young wippersnapper was worried about.....
Isn't getting older fun? ;)
I know. That is exactly how I described him to my husband when I got home. one last thing. Is there a limit to the amount of oxygen you should inhale at a time?
No. While it is possible for oxygen to be toxic breathing it through a nasel canula or even a non rebreathing mask will not allow you to breath anywhere near 100% so you will be fine.
My pleasure. I hope you feel better soon.
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