Ok, here's what is going on. I am about 99% sure I suffer from Cluster headaches though I have not received an official diagnosis. Looking back, I have suffered from these headaches  for the last 10 years. I have tried figuring out what these headaches were forever because they would show up and just leave out of the blue. They always hit around late fall and last a couple months then will disappear for a year or more. I went to the doctor about 5 years ago and they did an MRI and couldn't find anything wrong, but they disappeared after that for a couple years so I didn't think any more of it, but over the last few years, they return without fail every year. This last week has been as bad as it ever has been. 4-5 a day and the worst pain ever!!! They always affect my left side, my eye swells up and tears/gets red. My left nostril will plug up, then start draining, then plug up again. My upper jaw also starts screaming at me! I pace, bang my head against the floor, whimper, try putting frozen vegetables on my head. I have tried Aceteminophen, Ibuprofen, Excederin Migrane/tension headaches and nothing, I mean NOTHING helps and all I am doing is damaging my liver. For a while I thought it was a reaction to MSG, but they still show up when I am 100% certain I am MSG free (I still think it triggers them). My daughter gets scared to see me writhing in pain and I am worn down and out from not sleeping. I dread the tingling I feel on my left side because I know one is coming and there is nothing I can do about it! Without rambling on and on I have researched cluster headaches extensively now and am certain that is what is going on.
I just made an appointment with my doctor tomorrow because I cannot deal with this any more! So what I am asking from the group is what questions should I ask and how can I make them lean toward this diagnosis? I do not want to go months and months of misdiagnosis because they think it is something else.

I just don't know what to do anymore and I can't deal with this horrible thing. My whole family is affected, but they have no idea how excruciating these are. I am happy that there is an entire support group for this and look forward to participating!

Alex

Alex,
Well written post. We've all been there and still are.
Where in the world do you live.
There are people here who might be able to help you find the right medic. It must be a headache specialist. Your family Doctor will be unlikely to get you the help you need.
Keep the faith. There is hope.
Peter.

Alex,
If you look at the left of your screen, towards the top of any page, you will see a tab for "where we live". There are 86 registered members in your state. Maybe one of them lives nearby and can help.

You should discuss the possibility of getting prescription home O2, when you are with your Doctor tomorrow. The pain relief is remarkable.
Best of luck. Keep updating here. It's the best place for advice and support.
Peter.

Doctor appointment went well. He diagnosed me with cluster headaches. Going to try Imitrex 1st to see how that works. Just having troubles now finding a pharmacy that has it in stock...

Alex M wrote on Jan 23^rd, 2015 at 2:53pm:


Whilst imitrex is great for aborting a CH when you get one, a preventive should also be used to cut down how many CHs you get. So you should be on something like verapamil, lithium or topomax.

I finally got my Imitrex yesterday, but I have not had a headache to see how it works yet(I'm not complaining!). We discussed getting High Flow Oxygen and a preventative medication as well, but I want to try one thing at a time rather than throw a whole bunch of stuff at it and have no idea what works. Thanks to everybody for their comments and support! It is nice to know I am not alone!