BarbaraD wrote on Jun 19th, 2015 at 10:25am:Now here's another piece of advice I'll give you as an OLD timer here. You live in NC... have you ever met another Clusterhead? NO? Then you need to meet one. That's the best experience you can have. It's hard to explain until you do it, but I've met about 1000 (at least) and so far I've never met a stranger (does that sound a little strange - it's true - for some reason we just aren't strangers when we meet).
Thanks for the kind words Barb.
Have I ever met another Clusterhead?
As a matter of fact, I met one the day I was diagnosed in the ER.
There was an EMT that was interning at the ER, working towards his paramedic credentials.
After being misdiagnosed for 10 years, I started to have a KIP 10 right after lunch and decided enough was enough.
My allergy doctor was scheduling me for a head CT, so I figured I would just get to the hospital.
I arrived at the hospital and sat in front of the receptionist for about 10 minutes until I was able to speak.
(Was in the middle of one of the peak waves and made myself sit down so I didn't look like a menacing mental patient.)
Once I finally could talk, I told them what was going on and the got me in a room within 10 minutes.
The EMT that was interning in the ER took my vitals and the ER Doctor came in shortly there after.
That ER Doc immediately strapped O2 to me and gave me an IV.
After waiting about 25 minutes for my headache to subside, the doctor asked me if I had ever gone online to research my condition.
I told him no, I never had.
I was told previously that it was allergies and was getting concerned that I might have a brain tumor or something.
(Of course most of us have thought the worst when we didn't know what we had.)
The Doctor then said that I pretty much described word for word the text book definition of Cluster Headache Syndrome.
Just prior to being discharged, the EMT intern stopped to check on me and said that he is a Clusterhead and wanted to make sure that the ER Doctor picked up on my symptoms.
Only after I left there and started researching things did I realize how lucky I was to be properly diagnosed.
While I was waiting for my Neurology appointment, the ER Doctor gave me an Rx for Verapamil.
(Found out later that the dosage was way too low to be of any use.)
When I was filling my Rx at a local pharmacy that I'm friends with, my pharmacist buddy tells me that one of his family members is a Clusterhead as well.
My pharmacy said that they will never let me go without my Sumatriptan if at all possible.
They keep two boxes of autoinjectors on their shelves at all times just in case.
They will also give me the medication and run the paperwork later on if the insurance is jamming me up on the refill interval.
I'm so blessed to have a good pharmacist and will always keep my business there.
To your point though, yes, having something as powerful as CH in your life can most certainly forge bonds.
NO ONE else knows the kind of pain we have to endure.
I've shattered my pelvis, torn my urethra, ruptured my spleen, bruised my liver and even had a touch of gouty arthritis.
NOTHING comes close to the intensity of a CH hit.
Take care...