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        Cluster Headache Help and Support >> Getting to Know Ya >> Hello. I suspect I am having CH. :(
        
(Message started by: Philhellene on Jan 22^nd, 2008, 1:08pm)

Title: Hello. I suspect I am having CH. :(
Post by Philhellene on Jan 22^nd, 2008, 1:08pm

Hi,

Hello. I'm so glad to have found this message board. I'm Angie, and I suspect I am having CH. I only just learned about CH. I mean, I've heard of it before, but I had never reviewed the symptoms, and I thought my doc would tell me if I was having them.

Here's my long headache story, I hope someone will read it and give me some feedback.

Ever since my teens (I am 32 now) I have suffered from headaches. In high school, I thought it was due to poor diet. I always had a headache about 1:30pm that would last into the evening. It felt like heavy pressure around my eye, usually my right eye. I also sort of thought this was due to the lighting in the school. It was pretty bad lighting. I was also given reading glasses, because they thought it could be eye-strain.

When I finally got out of high-school and the headaches persisted, I went to the doctor again. They determined I had a sinus blockage, and I needed surgery for that and a deviated septum. So I had the surgery...guess what? I still had the headaches :-|

I have had these headaches off and on for all this time. I always attribute it to allergies (since i usually feel activity in my sinuses), caffeine withdrawal, or hangover.( In recent years, I cannot drink more than one drink and I cannot handle even one glass of red wine. I thought this might be a sulfite allergy.)

This past year these headaches have also started to hurt under my right shoulder. I have no way to describe it other than it feels like there is a "string of pain" connecting the back of my right eyeball to under my right scapula. I know that probably sounds very weird. I started going to the chiropractor because I thought it might be postural. While I'm sure the chiro has done me a lot of good, guess what? I still have the headaches. :(

Yesterday I had one again. I got it after drinking a diet coke and sitting in the movie theater with my friends. I felt like someone is stabbing me in the eye with an icepick. I do not bang my head or anything, but putting pressure on my browbone by my nose takes the pain away for like 30 seconds. Sometimes I really need that 30 seconds. I don't pace or anything, but I don't like to lie down as that just seems to amplify the feeling of pain.

I am going to my doctor later, but I don't know what to tell her. I am not sure that there is much of a solution for this. It feels like nothing I do ever works and I'm just at a loss as to why this is happening. I do have other conditions that could be contributing, but I know nothing about that.

Well that's my long and frustrating backstory. Has anyone else ever experienced pain in the shoulder like this in connection with the headache? There is more to me than all of this so feel free to ask me any questions you want.

~A

Title: Re: Hello. I suspect I am having CH. :(
Post by Bob_Johnson on Jan 22^nd, 2008, 1:42pm

On the buttons (left of this page) go to "cluster quiz". [If these buttons are not on your screen, hit the reload button a time or two. For ??? reasons this block of buttons doesn't always load properly.] There is a like test on the OUCH site (along with much good information). These two tests will help you decide.

It's most important to work with a doc who has experience treating complex headache conditions. Most doc have almost no training and little practical experience--most especially with Cluster (since we are such a small minority). This lack of skill with many docs is why it often takes years for folks to get a good diagnosis/treatment. If you have this option:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: Hello. I suspect I am having CH. :(
Post by Philhellene on Jan 22^nd, 2008, 7:12pm

Thank you for the links. After taking the quizzes, I definitely think I will be taking up a discussion about CH with a qualified doc.

I am still curious if anyone else has shoulder pain during attacks.

Title: Re: Hello. I suspect I am having CH. :(
Post by ski2k on Jan 22^nd, 2008, 11:20pm

Hey Angie...

I pulled a muscle under my shoulder blade years ago, and sometimes being overworked or overstressed will cause it to ache quite a bit. I have definitely noticed when getting hit with the CH's on a regular basis, it does tend to hurt that muscle more, BUT.... I suspect that, for me, it's mostly due to the stress of the headaches, and not so much a direct connection between the two. Getting that stressed and tense during a hit tends to make other muscles in my body ache, too. Like I just ran a marathon.

Hope this helps some, and good luck talking to your doc! Hope you get to the bottom of your pain soon!

Take care,
Adam

Title: Re: Hello. I suspect I am having CH. :(
Post by monty on Jan 24^th, 2008, 10:03am

on 01/22/08 at 19:12:58, Philhellene wrote:

More in the neck for me - but "referred pain" is a weird thing - activation of one ganglion can result in pain in a very different spot.

If you have regular muscle pain issues, you might consider checking out the Trigger Point Therapy Workbook - a good self-help guide for many type of referred pain, with cheap (free!) solutions. It probably won't have any effect on your headaches, but your shoulder might feel better.

http://www.triggerpointbook.com/

Title: Re: Hello. I suspect I am having CH. :(
Post by Guiseppi on Jan 24^th, 2008, 10:55am

I "scrunch" up my neck and shoulder muscles when an attack starts and have actually strained the muscles so that they hurt for days afterwards. And no, "the muscle connected from your shoulder to your eye" doesn't sound weird. Early on I suggested to my doc they could just cut the muscle that I could feel under my scalp, just above my shoulders, as it felt like that was what was casing my headaches!

For now, until you can get a decent diagnosis and treatment plan.

Try slamming down an energy drink, Monster, Rock Star, any containing both caffeine and taurine, at the first sign of a headache. Many can abort an attack that way. Try keeping them open, in the fridge, so the carbonation goes away, makes em easier to chug.

Sounds like you are episodic, meaning they go away fro months them come back again. When you are on cycle, that is getting headaches, avoid all alcohol. A major trigger for most of us.

Print out the info Bob gave you. Be prepared for the docs to tell you women don't get clusters, that myth continues with many doctors. The sooner you can get a diagnosis and get a treatment plan started the sooner you can get your life back. Good luck, please let us know how it goes.

Guiseppi