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Glad to be here 10 years in the making (Read 783 times)
RRChocolate
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Glad to be here 10 years in the making
Aug 23rd, 2016 at 8:46pm
 
Hi everyone! I'm here with my brand new diagnosis of cluster headaches. I have been suffering for upwards of 10 years - and I'm only 24. Since the pain occurs behind my right eye, and I wear glasses, I thought it was an eye problem till this year. I went to 5 different optometrists and ophthalmologists, including a neuroopthomologist, and got several diagnoses: astigmatism, dry eyes, and computer-induced eyestrain.
But the drops and new eyeglass prescriptions and staying off the computer and switching to contact lenses, then daily contact lenses all helped minimally. Meanwhile, my eyes were basically healthy through all the dozens of tests.
Finally I started to suspect a headache of some sort. I went to a neurologist who specializes in headaches, and got the diagnosis of CH.

I am pretty confident in the diagnosis: I get severe bouts of eye pain, up to a 7 on the Kipp Scale, that can wake me up at night and are disabling. My eye feels like it is about to explode, but looks totally normal. They definitely come in clusters, with happy times in between, and only occur several times a year. The onset of the pain is severe, and disappears just as suddenly.

But I also have a mild eye pain, 1-3 on the Kipp Scale, that is much more pervasive. I feel this for weeks at a time, for a third of the days in the year. While I can function, it saps my energy. Sometimes it gets worse - to 4 or more rarely, 7 - while other times it stays at these low levels endlessly.

I'm glad to have found this site. The more I read, the more relieved I feel at finally getting the correct diagnosis.

I tried sumatriptan on my shadows and it worked. I had limited success with excedrin, probably due to the caffiene.
I live in northern NJ, and just found a company that will fill my doctor's prescription for oxygen, so I hope it works.
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« Last Edit: Aug 23rd, 2016 at 9:07pm by RRChocolate »  
 
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maz
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Re: Glad to be here 10 years in the making
Reply #1 - Aug 26th, 2016 at 6:13pm
 
Hi RR,  Glad you found us, but sorry you had to.

If you look around this site you will find numerous posts about vitamin D3. You should take the info there very seriously as the D3 regimen has made a huge difference to many of us.  The regimen is Batch's baby and if you send him a PM he'll help you get started.

Sumatriptan is brilliant.  What type do you have - pills, nasal spray or injections.  The injections are by far the best and will work in 5 - 10 minutes even on the worst CH.  But you can only use 2 per day.

02 is also great and can be used as often as needed.  But you must have a high flow - at least 15 lts per minute, and you must also have the correct mask - a non rebreather. These are both vital for it to work properly. 

I use the 02 at home and save the injections for when I go out.
Maz.

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« Last Edit: Aug 26th, 2016 at 6:16pm by maz »  
 
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