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Hemicrania Continua/Neuro Appt.

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Migraine Headache
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Posted 11/6/2010 8:18 AM (GMT 0)
I went to a new Neurologist yesterday. He specializes in migraines/headaches. He seems like an extremely good Dr., I was very pleased! He's thinking I have Hemicrania Continua. He started me on a 7 day Prednisone plan to try to break my headache cycle. He has also put me on Idomethacin, 50mg 3x's day, to see if that gives me relief. He said I should have some relief in 2-4 days! I'm trying to stay positive!! After 22 failed medications, I've kind of lost hope. If this does not work he wants to do a nerve block to see if that works.

My background - My headache/migraine started mid January in 2008. I spent 4 months in bed, barely able to function. Since that day in Jan. 08 my head has not stopped hurting. The pressure behind my right eye never goes away, my eye is always swoolen and droopy. Since all this started, I can longer stand the smell or taste of coffee (I miss it soooo much).

Has anyone else been diagnosed with Hemicrania Continua?

Do you have triggers that make it worse?

 

Posted 11/10/2010 12:34 PM (GMT 0)
Well, I've been on my new meds for 5 days. This is the best I have felt in over 2.5 years! I almost feel like myself again! I'm absolutely exhausted and feel like I could sleep a week or more away! I can deal with that...at least it's a painfree sleep!

I am so happy I found this new Dr....I feel like I have a new future now...so far! I don't want to think to positive about everything.

For those who are giving up trying to find the right meds or Dr....keep searching!
Posted 11/10/2010 9:08 PM (GMT 0)

Hi,i totally relate to your suffering.I was diagnosed with Hemicrania Continua in July this year.Indometacin is a lifeline and will assist you.Also as a backup you may have a nerve block in your Greater Occital nerve,it works for some and not for others.I think you will find relief in the indometacin and the other drug you are on sounds like a preventive tab.If you are having no luck a few months from now you may have multiple nerve blocks,which are powerful!

This migraine is a nightmare,i have had it for coming up 2 years and it is continual.Mine has been extremely aggressve and i have 12 injections into various nerves over the past 3 months and i am currently on Pregablin-150x twice daily and indometacin 75mg-x3 daily so i hope for some relief.

Good luck with everything

and if you need some support please respond.

All the best,

Plato

Posted 11/20/2010 2:34 PM (GMT 0)
Hi HeyAim and Plato,

I have had Hemicrania Continua for 22 years!!! - and Chronic Migraine since my teens - am now 57!!!!

HeyAim - make sure you take a tummy protector with the Indo such as Omeprazole or Lanzoprazole, as this med is very strong - it's got to be to knock out the sort of pain we go through lol!!!!!

I am due to have another nerve block at the beginning of December while I am waiting for an operation to give me an implant which has a good record for HC - I know of one sufferer who is pain free with it!!!!!!!! If you want to know any more about this please contact me! I would say that this operation is available in the UK at the moment with a fight for funding which is by no means certain, I am uncertain of the status in the USA or anywhere else!!!

Sadly I can no longer take Indo as the lining of my gastrointestinal tract has been damaged - despite taking a tummy protector!!!! Thankfully I was able to take Indo for around 18 months and it was the best 18 months for years and years!!!!!!

take care

Ann
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