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Chronic Cluster Migraines

Dec 23, 2014 9:06 PM

For those who do not know, as I didn'tknow, this is a condition that causes migraine headaches to fire off in one spot and like a seizure flips the brain out of control they trigger a chain of mini migraines that feel like 1 solid bad one. This is hard to diagnose because they have to "catch" it and they don't always know where to look. It also can trigger phantom like pains or events in other parts of the body, lime I loose vision, get weak leg, and get pins & needles in my feet.

Does anyone else have this? What has worked?

Dec 24, 2014 11:11 AM

I have had similar issues and generally get migraines/cluster headaches 2-3 times a week. My cervical spine is so horrendous that they have attributed mine to that. I'm so sorry you are suffering... I hope that you get some relief. Darvocet is the drug that is made for migraines but you have to see if your doctor feels it's safe for you. Best of luck to you... Keep me posted. Merry Christmas

Dec 29, 2014 9:26 PM

Injecting Sumatriptan at start of an attack usually stops them instantly - catch is each injection costs about £30 or equivalent so getting medics to prescribe it takes force sometimes...! I used about £22,000 worth (thank you, NHS!) over the 2 yrs I was getting 2 attacks a day like clockwork. The nasal spray might work but isn't licensed for cluster headaches, injections are. Oxygen at 15L/min on non-rebreathing mask also works for most people but again you have to catch the attack in first 10 mins.

Dec 30, 2014 5:59 AM

I was having migraines on a daily basis until early this year. That's when I finished a 2 year regimen of Epidural Steroid Injections, between the C7-T1 levels; I got 3 injections a year. I still have disc related headaches on a weekly basis, but my migraines have reduced to 1-2 in a 3 month period. I hope you can find something that works for you and soon, because 1 migraine is one too many. Best wishes!

Dec 30, 2014 7:17 AM

I'm hoping to get injectable triptans (sumatriptan or zolmitriptan) I've been on sumatriptan tablets and zolmitriptan nasal spray for a while but it doesn't work anymore.
I'm also going to try to get oxygen at 15 litres per minute with a non rebreathing mask but I've asked before. It's hard to get still trying years down

Dec 30, 2014 10:20 AM

If you want to get feisty with your GP then you can - if you have a firm diagnosis then the ONLY licenses treatments are injected triptans or oxygen.

Dec 30, 2014 10:37 AM

The problem is some GP's (like mine) don't believe in cluster headaches. They believe it is just bad migraines so give you migraine treatment. If this happens like it is with me consider getting more feisty and proactive but remember to still be at least partially diplomatic

Dec 30, 2014 12:27 PM

Get referred to a neurologist - if they refuse say the magic words "gmc". It is unethical and illegal to withhold treatment. Speak to OUCH (CH association) for advice - they see this all the time.

Dec 30, 2014 1:32 PM

Please read my reply to Migraine post earlier. I know cluster headaches are different but the information contained in the post might help you. Good luck.

Dec 30, 2014 2:59 PM

I know about the GMC I've said it many times before and taken them there but it didn't work this time

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