Neck/Shoulder Pain Need Advice

[MFuller]

Hi everyone,

I guess I will start with a little background info...I’m a female that was diagnosed with CH as a teenager and am now in my mid 30s. I went through my first cycle without diagnosis, and it was pretty textbook. Excruciating/vice grip/ice pick to the eye headaches on the right side, grow in intensity over 45 minutes almost exactly, come at similar times of the day, right eye tears, nasal passage becomes swollen and drips (I always thought it was blood coming out). It starts with one headache a week which progresses to every other day to everyday and finally multiple headaches daily that increasingly get worse. After a couple months they disappear. That first cycle was pretty scary. We considered severe allergies, maybe there was mold in the classroom I kept getting headaches in (teacher sure didn’t understand), migraines,  brain tumor, but they magically went away. Next year they come back, and my parents take me to a neurologist. Clean MRI. Diagnosed with CH. Prednisone broke the cycle. Hooray! They come back the next year, but it takes more prednisone this time and then an IV of some sort. Each time they come back, more steroids are required as well as imitrex shots. When I started having children, I suddenly went 3 years in between cycles instead of 12-18 months. Not sure if there is a hormonal aspect at play or if it was the Verapamil that spread the cycles apart.

 

Anyways, the freaking things are back. I’ve been through 2 rounds of prednisone. The first round kept them away for almost 2 weeks after the taper stopped. Not so lucky the second round. They came back the last day of my taper. After reading several posts, I see that the Verapamil should have been prescribed at the same time. I’m taking it now, but the headaches are still coming daily. I have added 10 mg melatonin, got a script for oxygen (waiting for supply company), and am ready to try the vitamin regimen. I have also had success with doing pushups to abort individual headaches?! NEVER would I have thought that would work until I read it here at clusterbusters! Unfortunately it didn’t work this last time around. I tried the 5 hour energy drink when the pushups didnt work, but it didn’t help...maybe I started it too late? 

The ongoing problem now is a very tight neck and what feels like a pinched nerve in my shoulder on the same side as my headaches. It almost feels like a painful numbing feeling that radiates up my neck and into my temple/behind the eye. It’s like the beginning of a cluster, but it just stays there. I am wondering if a chiropractor or massage would help, but I’m also terrified that it could make it worse! Any advice on what to do? 

Sorry for the long post! I just thought more info might help with advice.

Also, on a side note. I have never touched a cigarette in my life and rarely drink. I had never had a drink before my first cycle, and I am female. I feel like an outsider!! Are any other women out there with similar experiences?

Thank you all!

Meghan

 

 

 

 

 

 

 

[spiny]

Morning Meghan! Being female used to get you a migraine diagnosis, just because you were female. They are now finding that since they are diagnosing correctly that perhaps up to 50% of sufferers are women.

The sore neck, like the lump on the back of your noggin are both sort of classic problems for CHers. Some use heat or massage on it for some relief. I have found that sleeping on the edge part of my pillow helps. Massage never did touch the hard knot for me, but it might for you. At the least, is is relaxing and that is a definite plus. Chiro does not have a good reputation treating CH. 

Make sure that you get pure O2, not a concentrator. And a non-rebreather mask for aborting with O2. There is a great page on O2 in the Clusterbuster Files section of the forums. It is very important to use it correctly for good relief. 

I suggest you read up on the D3 Regimen. It is awesome and has helped some go completely pain free. Others benefit from lower level hits and slower ramp-up of pain. All in all, it is good for your health even if you don't attain PF status on it alone.

Your Energy drink should be taken at the first sign of a hit. Then move on to push ups or O2 when you get it. It works best if taken immediately.

It is most common for patients to take a taper pack of Pred. while the Verap builds up in their system. Some require very high doses of Verap too. Up to about 960mg/day.  Others get great relief at about 300mg or a bit higher. Depends on the patient.

Word of warning on the Trex. It is known for increasing the number of hits per 24 hours period and also for extending cycles. Then there is the decision of which two of the day to treat!

You were fortunate to be diagnosed early. I went over 30 years fighting for the right diagnosis. 'That's a disease of men. Women get migraines.' Nope. Very wrong.

[TrueNorth]

Ahh that sounds like me to a tee!!

the tight neck and muscles on the back shoulder area, when I’m in cycle it’s always there all day, try stretch it out but it’s very hard to stretch those muscles. I sometimes think it’s a pinched nerve too, I had to quit baseball for the summer cause of throwing action triggers attack about half hour after game.

I tried a chiropractor once, they actually triggered an attack shortly after, will never visit another when I’m in cycle, I can handle them out of cycle no problem.

I have visited a masseuse recently and they focused on that area for a solid hour, started slow, than gradual near the end of the hour started to really put pressure into the muscles in the troubled area. It felt good!! and! I didn’t get an attack for a couple days, my eventual attack after that massage was a mild one. 

Try the massage, might help you out. At least for abit. Which reminds me, I’ve been meaning to go back for another session.