So a week and a half ago I went to see an urgent care doctor because I was having pain my face sinus region and left eye, I was sweating, my eye was watering, and I felt like I was going to pass out from the pain.  On a side note, for years I have been having these attacks that seen to be seasonal starting in September or October time frame and lasting until January or February.  I have seen many doctors and ENT's who told me that I had bad sinus infections or upper respiratory problems or seasonal allergies.  they would prescribe me some form of prednisone and antibiotic and usually a nasal spray.  The symptoms would go away for a short period and than come back and the process would start over.  I now understand why the symptoms went away with the steroid use.  Anyway getting back to the point,  the urgent care doctor stated that she had a different diagnosis for me and told me I needed to see a neurologist to confirm.

Later that week I ended up in the ER as I could not get the headaches under control with the prescriptions the urgent care doctor gave me.  The ER doctor seemed arrogant and cocky not wanting to believe I had cluster headaches.  He told me that they only lasted up to 15 minutes which I believed was incorrect due to information I had seen here and on other medical websites.  They did a CT of my head and sinus region and both were normal according to the Dr.  He gave me medpredisone and a narcotic pain med and sent me on my way stating that it was just a bad headache or possible a migraine.

I saw the neurologist today and he confirmed that it appears to be cluster headache.  I have to do a MRI just to be sure that there is nothing else going on due to 1 double vision episode that I can not explain.  Only happened once and only for two or three minutes.  So I left the neurologist office with some hope that there is some hope.  Relief from the pain that has be misdiagnosed for probably 13 years now. 

I have some questions on how the Sumatriptan Nasal Spray and the topiramate 25mg tablets will effect me and what to really expect.  I know everyone is different and that the reactions may be different for me, but was looking for others experiences with these medications.  Any insight is helpful.  Thanks

Welcome Jonathan to the club no one wants to belong to.  I am glad you may have finally found some answers and a name to put to what you've been going through.  We affectionately call it the BEAST.

You would be better off with Imitrex injections and O2 as your abortives.  The Imitrex nasal will work but takes longer than a shot and the pills take way too long to work!

Sending you PF Vibes and Good Luck wishes for your MRI.

The topimirate has helped several members here. It wasn't my magic bullet, but I did take it for almost a year. It was the only antiepileptic that caused me to lose weight...all the others have the opposite effect. And its nickname among some is dopomax. It has the odd effect of making words and concepts disappear from your mental filing cabinet. Sorta like voluntary alzheimers. But...if it works for you, and I think you should give it a fair trial, it just might be worth the inconveniences to be able to manage the pain. Good luck and God bless. lance

Jonathan Mason wrote on Dec 14^th, 2010 at 12:13am:

The ER doctor seemed arrogant and cocky not wanting to believe I had cluster headaches.  He told me that they only lasted up to 15 minutes which I believed was incorrect ...

15 minutes max huh? You should be so lucky! I have had one last 90 minutes before. Plus an arrogant, cocky ER Dr who doesn't listen to the patient? ABSURD! =)

Jonathan Welcome. Iam a faithful user of the nasal spray and it aborts my attacks in about 10 mins. BUT there is a trick to the proper use of this product. I read of many here that dont get fast results or dont like the taste. I had the same problems until my doctor told me what I was doing wrong. If you taste this med while useing it your doing it wrong. I now have 02 so that will be my first abortive (becuse it's so cheap) but I have had awsome results with the spray.The big problem with Initrex is you can only use it twice in a 24 hour period,so if you have multiple headaches in the same day your limited. I also dont get the stuffy nose durning an attack so I think that helps with the spray. Check the 02 tab on the left side of this page. If you want to talk more about the nasal spray PM me.

Good Luck.

Sorry to hear about that all too familiar and common run in you've had with the medical profession, complete with that ER butcher epitomizing the deadly combo of ignorance and arrogance that pervades.

Glad you got a diagnosis finally though.

To be most successful really beating these things back you have to aggressively take charge of your own treatment plan, which I see you are doing (yay!), and right here at this forum is where so many of us have found the info and advice to do just this (double yay!).

For instance - the use of high liter flow O2 as outlined at the oxygen info link to the left is wildly popular here because it makes for such a good non toxic first line abortive. No doctor will instruct you to use it this way (it's that incredible pervasive ignorance thing again).

Some of us (myself included) will use imitrex injections as a back up abortive if the O2 isn't accessible or fails. One advantage to the injectible form is that the doses can be dramatically "stretched" as described here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. If the nasal form is all I can get, I'll cerainly use it - and it works for me. The last guidelines I saw for it suggested 3 doses max per day. It's best not to snort it real hard.  :)

There's been a real groundswell of a movement building of clusterheads (many of them middle aged church goer types) rejecting drugs (usually after they've failed) and going with nature's very powerful preventative, which turns out to be psilocybin and the like. Personally I've recently joined in embracing this approach, and so far consider it preferable to preventative drugs prescribed for CH. Here's a good Newsweek article on the subject of psilocybin etc. for cluster headache:
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