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

Hi Ananth and welcome

Taking 20 years to get diagnosed is a long, long time. Did the neurologist confirm the diagnosis from the RN?

It isn't at all unusual for people to have multiple teeth removed or to just be given narcotic pain killers which are near useless for CH as they don't really touch the pain and often result in dependency issues.

Sumatriptan 100mg will be the tablet form which is more effective with migraine, but for CH it usually takes 15-20min to be absorbed into the bloodstream, which is a long time when you've a CH. The injection or nasal spray versions are a lot better for CH, taking effect in around 5 minutes, which is a big difference.

Normally people are limited to taking triptans twice a day, so taking them 4 times is probably not advisable. I'd discuss this with your neurologist.

Oxygen can be used as often as you need it, so is there any reason why you only use it for your midnight attacks? (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or has a load of O2 info).

Topiramate can be an effective CH preventive, however some have problems with the side effects, often calling it variations of dopamax. The 50mg a day dose level is at the lower end of the scale, with some people needing up to 100mg a day or more. However your medical history will impact what dose is effective for you plus side effects are likely to be reduced at a lower dose. Do not change the dose without working with your neurologist.

Predicting the length of a cycle isn't something most people can do. Whilst some people have fairly regular cycles, others find it can vary. It will just take as long as it takes with worrying not doing anything to help.

I'd also strongly suggest that you look into trying out using vitamin D3 as a preventive as that has worked very well for over 80% of people trying it (including myself).

Keep reading and ask all the questions you have. People here know CH and good ways to manage it.

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.