This may turn into a novel but please read.  There maybe something here that works for you. 


Hello everyone.  My name is Jason, 32yrs old and live in NC.  I've had clusters now for 6yrs and started after I received a serious concussion from a car accident.  My l cluster cycle has always been in the fall from around the end of September through the end of November.  My pain and reaction is very similar to everyone else here.  For me it starts with sinus pressure throughout the day.  That is my tall tell sign the bomb is coming soon.  My attacks are always on the right side of my head starting with the temple and forcing my eye ball out of my socket during an attack.  The pain is so intense that it causes me to empty my bowels, vomit and pass out.  That is after the obsessive pacing, rocking, crying, screaming, thrashing, along with the uncontrollable sweats and snot.  I was so desperate for relief before seeing a doctor I sat in the kitchen during an attack and contemplated carving a hole in my head to release the pressure.  Of course I did not but I was willing to do anything to escape the pain.   For me, my clusters are never at a set time of day.  They happen at any time for any reason.  The worst happens when I'm sleeping, we all know at that point it's too late for anything and we ride the roller coaster of pain. 

This year I have added a new cluster cycle...lucky me!  Never had them during this time of year and the pain has been far worse than what I remember, although I say that with every cycle.  Currently I am taking Zolmitripan after being on Relpax for the first 5 years along with nexonex which is a daily antihistamine.  They work less than half the time and if I don't catch the signs in time there is no prolonging or stopping the attacks. 

Oddly enough last fall my cycle was extremely short and surprisingly I was able to manage it some what.  Along with the Rx the doc gives me I have found O2 canisters at a reasonable price on Amazon.  They are small portable canisters used for hiking and high altitude climbing.  5 pack for $50.  I highly recommend trying oxygen for when you feel an attack coming.  It can stop or prolong the attack.  For me once I'm in full attack mode it no longer works but everyone is different and we could all use some type of relief even if only for a short time.  During this cycle I was questioning myself.  Why am I having these now?  What have I done to trigger them?  Why was my fall cycle not as intense?  Of course I don't have the answer but I choose to be proactive and not let these %#$&ing attacks get the best of me even though they do control a portion of my life.  So thinking back to the fall season and wondering why they were the least intense.  What was I doing differently?  During the summer and into the fall I was training for a 10k marathon.  Exercise is actually a trigger for my headaches but last year it wasn't.  I don't think it was the excercise that prevented any clusters but perhaps the supplements I was taking during that time.  500mg once a day magnesium.  I was taking that every day for almost 6 months while training.  So last night I started taking it again.  I took one last night and one again this afternoon.  I'm not sure if it's the magnesium or if I'm at the end of this cycle but the pressure in my head I deal with daily during my cycle is not cut in half.  I would suggest talking with your doctors to make sure you are okay to take magnesium.  It does have a lot of healing powers.  I'm hoping this works and continues to work.  The last two weeks have been utterly exhausting. 

Be proactive.  Don't let this get the better of anyone.  Instead of waiting for my attacks like I have before, four days ago I took my medication before bed even without being in full attack mode.  It has allowed me to get some sleep for the first time in two weeks.  I still wake up with the time bomb ticking but I was able to sleep. 

Also, your body has ways to combat just about anything.  I like to use pressure points to try and help in or out of attack mode.  There is a pressure point in between your index finger and thumb.  Right in the meat of the two almost where they connect on your hand.  Yesterday I started to get the signs of an attack while at work.  I pushed hard and held for a few minutes.  My ear began to pop and fluid drained from ear and the pressure went away.  Not sure if it was a false alarm or shear luck but it stopped the attack. 

I'm not sure if these will help anyone but I know I'm desperate to try anything and I am not happy with the doctors answers of its just something I will have to deal with for the rest of my life.  I hope I'm on to something here and so happy I found this forum.  I'm looking forward to meeting and knowing everyone here and will do what ever I can to find relief and help others find relief.  We are not alone and we don't have to just wait for the attack.  If doctors can't find a solution maybe together we can. 

Big hugs to all
Jason

When you have such a complex yet unclear picure of you CHs, it's best to be working with a headache specialist. So many docs, even neurologists, lack training and experience dealing with Cluster. 

The meds you mention are, except for O2, are not stanadard for Cluster. Print the PDF file, below, and use as a discussion tool with any doc you see.

The linkage between head injury and Cluster has ben called into question in recent years so ???? Exercise has been linked, for some people, as a Cluster trigger becasuse of the eleveated body temp. But not a consistent factor.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Another reason to work with a headache specialist is the isue of Cluster-LIKE headaches--attacks which appear to be Clusters but which are mimics of the real thing, masking a striking range of other disorders, some of which are serious.
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

I see that imitrex has been mentioned a lot on the forums.  What is the difference between that and the tripans I'm taking that to work if taken earlier enough

Triptans is a class of meds, imitrex being one of them. They vary in speed of action and duation of effect, making it useful to tailor the one used to the characteristics of your Clusters.