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Oxy-man

Help Needed

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Hello everyone,

I trust all of you had a wonderful holiday,

I am currently going on my 4th week of cluster headaches and I wanted to share a little bit about my story to see if anyone had any advice.

I have had two other bouts of headaches in my life....once in highschool (10 years ago) and a second time in college 6-7 years ago. Fast-forward...this is my third time struggling with these headaches (now 28 years old) and I have similar symptoms. Pain behind one eye, extends to temples, cheeks, jaw and even neck (all on left side of head). I have some soreness when they are not "full blown". I DO NOT get nausea, balance issues, auras....only the pain.

When I had them the two other times earlier in life, I always had them during the day and I never woke up from them. This time around, I am waking up from them....usually around 2-3 AM and now I get one late morning. My neurologist has not given me a CT scan and seems confident that I am a cluster head.....oxygen is my favorite method of relief and it works very well. He put me on prednisone....which helped a bit but not completely and he gave me a testosterone shot. The pain isn't terrible at this point, but it's still pretty tough of course. I use the oxygen as soon as I feel any pain.....

I naturally have anxiety, so I am of course always concerned if it was coming from something else....especially since it's been so many years since my last bout with headaches. My neuro didn't even suggest a scan and firmly thinks I am in a cluster cycle.

Do you folks have any advice for me on this? My headaches have seemed more scattered this time around than the last two times as well......but this is the first time I tried the prednisone as well.

Your advice means more than you know....Thank you!

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As a general rule of thumb all cluster heads should be scanned. It’s very unlikely you have a pituitary mass or an aneurysm. But they should always be ruled out.  I think most people who have been here long enough had heard a story/ post about a positive scan. About 4 months ago a husband posted about his wife having an aneurysm behind her eye. Do you use psychedelics?  

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Welcome to the community oxy man

The only thing constant about the Beast is his ability to morph! My first few cycles had predominantly evening hits around bedtime, but then they became primarily nocturnal with a few scattered in during the day time.

Good deal that know about and have O2 at your disposal.....odd that your doc hasn't ordered an MRI though as that is pretty standard to rule out other nasty crap that mimics ch

Dallas Denny 

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Hey Oxy-Man,

You're going to get great advice from this community! I'm recently diagnosed. Mine only hit me while sleeping bet. 3-6am. I am tapering off the prednisone with the last dose tomorrow. It helped with the severity of pain for me but did not arrest them. I think this cycle (my first) is finally diminishing after 6+weeks.

I'm surprised that you haven't been scanned as well as a blood work-up. I'm assuming though that you've had a blood work-up with a hormone panel. At 28 years, I'd be surprised if your T levels were low. (just curious) as to what your levels are at.

I have yet to get the oxygen. High octane caffeine has helped me. Homemade ginger tea does help me with the constant shadow headache. I've started the D3 regimen, and once the prednisone clears my system, I've obtained MM's which I will try.

Good Luck

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Thank you so much for the responses everyone! Good to know that it is not unusual for these to change behavior. It's so comforting when you can talk to others that have walked the same road.

I should have specified that I did get scanned in college and I was clear (thank God)! The neurologist said no need for scan because I have prior history and they respond to oxygen....I guess only clusters respond to oxygen treatment to relieve pain?

Today was a better day.... I didn't wake up last night! (night ones are the worst!!!) in my opinion. I find myself counting down the days....having faith the end if near for these things. I will try the ginger tea JJinNJ, thanks!

 

Freud and Dallas Denny, you would think just for peace of mind they would have me do one again, but like I said ealrier....the neurologist is basing it off prior experiences and that it is relieved by oxygen....

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If you had a scan when you were younger and had the same exact symptoms. A new scan isn’t really warranted. That extra bit of info changes my opinion. 

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3 hours ago, Oxy-man said:

I guess only clusters respond to oxygen treatment to relieve pain?

Yes, that is basically true.  Some other "headache" conditions sometimes respond to O2, but not consistently and generally not as fully as CH does.  A big note of thanks can be given to Dr. Kudrow (grandfather of the actress Lisa Kudrow, and who himself had CH), who conducted the first recognized trials of oxygen in the early 1980s, and to Dr. Goadsby and his colleagues who conducted medically persuasive (double-blind, placebo-controlled, etc.) trials in 2009.

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