3 month cluster headache

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New Member

Date Joined Jan 2009
Total Posts : 5
   Posted 1/23/2009 8:32 PM (GMT -6)   
hello my name is rebecca.   about three years ago i developed migraines and had excrutiating pain for 3 months..i couldnt leave my house..i had the mri...scans...and a spinal tap.  the outcome was that i had migraines and was sent home..with amitryptaline which i've been taking all along along with axert seemed to be helping until recently.  in september i called in sick a little more frequently until the headache was out of control again...the pulsating would not stop pain behind my eyes and the roof of my mouth..i was nauseated dizzy..i just layed in bed crying almost every day going to the doctors every week.  she gave me beta blockers..proponolol...which i kept fainting because i have low blood pressure to start with.  i just went to see my third nurologist and he confirmed that i have regular migraines and clusters because both times i had the 3 months ones were in the fall onwards.  he couldnt give me any suggestions...i can deal with migraines a few times a month, but not for 3 months..its the worst pain possible and i can barely stand it...i was wondering if anybody has delt with a similar situation and what they do for the pain or how to calm themselves down when in pain for 12 weeks straight?
discouraged confused

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 1/24/2009 7:25 AM (GMT -6)   
Preventive meds. Sounds like amatriplyne isnt working. Try asking the doc for another preventive. And try to find what triggers it. Long hair can trigger, because of how heavy and think it is.. Ask about topamax, tegratol. Good luck and keep us posted.
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DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
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New Member

Date Joined Jan 2009
Total Posts : 5
   Posted 1/25/2009 6:56 PM (GMT -6)   
thanks for the post..i\ve just started epival or something an anti seizure medicine..but i wonder how long you should be on those type of meds.  is there anything else you can do as relaxation techniques while you are in pain

New Member

Date Joined Feb 2009
Total Posts : 1
   Posted 2/9/2009 2:09 PM (GMT -6)   
I know some of what you are feeling.  I haven't been suffering for 3 months but I have had a cluster migraine for the past month and a half.  I also have naturally low blood pressure, but I have found that verapamil works for me.  I take 120mg once a day every day.  It has not bothered my blood pressure at all.  My primary doctor was worried about that because of my low blood pressure but I have been fine with it.  The only reason I have been suffering is because my insurance policy was cancelled and I ran out of medication.  I had been headache free for over a year.  Because my cluseters are also migraine in nature, I take relpax and the imitrex injection.  The injection is great for instant relief.

Veteran Member

Date Joined Dec 2004
Total Posts : 921
   Posted 2/11/2009 8:15 AM (GMT -6)   
Hi Headachegirl,
Welcome!!! I am hoping we can help you figure something out that will give you some peace of mind, if not relief!
First, I have to say that FOR ME, the long hair thing is just a myth. (I have extremely thick hair and a doctor tried to tell me that was the problem, so I cut it short...the headaches did not change at all- so don't run out desperate and chop your hair off like I did!)
I would talk to your doctor about PREVENTATIVES, it is much easier to prevent migranes/head pain than it is to stop it once it's in full force. If something is not working then find the next thing, just know ahead of time it may take a few different tries or even a combination. You do need to be prepared with a plan of attack when you do get a bad episode (what kind of acute meds will you take, can you lay down in a dark room, will you be able to relax)
Know that you are not alone with the fall season triggering bad episodes! I find that there is a really bad month in the spring but that SEPTEMBER is always a huge problem for me. I think it is the barometric pressure that affects my head pain.
Keep a migraine diary- that is a wonderful way to keep track of triggers as well as patterns and things that help make the pain go away!
Please keep in touch!
Sara-Migraine/Headache Forum Moderator
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