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Cluster Headache Help and Support >> Cluster Headache Specific >> New to this post - suffering from CH for 22 years http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1486124920 Message started by Ananth on Feb 3rd, 2017 at 7:28am |
Title: New to this post - suffering from CH for 22 years Post by Ananth on Feb 3rd, 2017 at 7:28am
Hi, I have been suffering from CH from 1994 and it was diagnosed after 20 years by a RN during an emergency visit at Baltimore in 2014 and not by any doctor. All these years I was thinking that it was a dental pain and was treated for dental root canal and the pain used to last for a month, eventually lost almost all the molar teeth by doing repeated root canal treatments on the same tooth again and again. As everyone knows the pain is kind of killing one and and I used to faint after 30 to 45 minutes of the episode. My PCP and the dentists used to prescribe codones and morphine but were of no use. The RN in the ER had prescribed Sumatriptan 100 mg for the cluster headache and it has worked well. After 2 years I have experienced CH again in Dec 2016 and I am taking Sumatriptane 100 mg 3-4 times a day along with Oxygen. Oxygen I take only during the midnight attacks. its been 2 months, there is no sign of the CH fading away and I am kind of bit worried. My pat experience was that, it went away after a month. This is the first year, I am continuing with the medication and still continuing with CH for 2 months. My neurologist has prescribed Topiramate 25 mg x 2 day and I am 2 weeks on it and no signs of improvement. Any thoughts or advice from the group. I appreciate your response as you know the pain and agony on this subject. Thanks. Ananth
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Title: Re: New to this post - suffering from CH for 22 years Post by Esheel31 on Feb 3rd, 2017 at 9:19am
The Neuro should have given you a steroid taper.
Predinisone or dexamethosone. Have you seen a headache specialist? I have no experience with Topamax. I have used verapamil and lithium. Batch has a great vitamin regimen that has helped lots of sufferers. Talk to your Doc about sumatriptan injections. Much faster than the pills. |
Title: Re: New to this post - suffering from CH for 22 years Post by Ananth on Feb 11th, 2017 at 9:55pm
Hi, I thought that I never got any response from the forum as the notifications went to the junk mail folder. Thanks for the response. I will buy the vitamin supplements as suggested by the forum tomorrow. My PCP has asked me to increase the Topiramate to 100 mg. I am planning to meet the Neurologist next week to talk about the Sumatriptane nasal spray. The O2 helps me but without Sumatriptan CH comes back in 1 hour. Thanks, Ananth
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Title: Re: New to this post - suffering from CH for 22 years Post by maz on Feb 12th, 2017 at 11:57am
You are taking massively too much sumatriptan. it constricts the blood vessels and are really bad for the heart, and should be used sparingly. 50m twice a day is the limit. If they are not providing enough relief ask your doctor for the injections which will kill off the worst CH is 5 - 10 minutes.
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