Thursday, December 11, 2008 kleedy asks

Q: CPH, Am I at the right site or is there another that would help me more?

I have had CPH for 15 years. I have searched and researched everything that I can find on the internet. There isn't much to find that I don't already know or that isn't a repeat.

I don't fill that CPH is the only pain disorder that I have. My doctor has been treating me with high doseages for 8 years. I still get breakthrough pain. I am very concerned about my health. I have ulcers in my thoart and colon, rectal bleeding, I have gain 110 lbs in 2 rs., I have High Blood Pressure, my vision is different everyday(vertigo), short trem memory loss, fatigue, depression, anxiety, musle weakness on right side, insomia, or drowsiness, light headed, chest pain on the LEFT side, fluid retention, massive sweating, my pain travels further south the older I get. The pain accures starting at the top of my eye, around my eye into my nose, into my jaw and headbone connect, into my ear, down my neck into shoulder muscle, into shoulder blades, down my spine then it effects my entire back.

I don't have any other signs that go with CPH except, it's all on my right side and always has been and that it responses to Indocin. I feel as though we are missing something. I am stuck, I would like to come off the Indocin if only there was something else much less invasive. My family doc wants me off of it now, b/c of all these side effects, and my Nero thinks that I am healthy enough to handle it. It's been 8 yrs. I am tired and need help. Can you please try to lead me in a different direction?

Thank you for your time and God Bless you,

Kristen L. Cincinnati OH

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Answers (2)

Teri Robert, Health Guide

12/14/08 12:24am

Kristen,

The muscle weakness, chest pain, and some of your other symptoms don't quite fit the standard profile of paroxysmal hemicrania (PH). That might fit with your not feeling that PH is the only disorder you have.You might want to take a look at Paroxysmal Hemicrania - The Basics.

While response to indomethacin is considered to confirm the diagnosis of PH, there are a few other drugs that can te tried. It sometimes will respond to Celebrex, calcium channel blockers, or corticosteroids. These are things you could discuss with your doctor.

I would suggest talking with your doctor about your symptoms and exploring the possibility of other health issues contributing to your symptoms. With the chest pain, high blood pressure, and fluid retention, you might want to ask for an EKG to rule out any heart issues.

If your doctor doesn't have any suggestions for treating the PH other than indomethacin, it's time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

I hope this helps,

Teri

PainHead

12/11/08 6:26pm

The neuro is a bit unsure, but I probably have developed CPH... The question mark is that I never have had complete responce to Indomethacin even at high doses. It does help far better than nothing though. Since my case is not textbook, I know that feeling about more info. The websites often say the same things in different ways. Texts with more in depht info seems hopeless to find. I really know your frustration!

When it comes to the side effects it seems like they are plagueing so much that your GP might be the one who is right. When you also have ulcers, you need to use caution. At least take medication to counteract overproduction of stomach acid. I'm not able to tell if all of those bothers you have except for the headaches themselves are side effects from indocid. But if so is - My opinion is that you should look into other pocibillites with your drs. If your neuro don't understand you, I would advice you to see anotherone. Medication is supposed to give relief, not lots of unwanted problems. Since you have been in the game such long time you probably have tryed other meds? Verapamil?

Q: CPH, Am I at the right site or is there another that would help me more?

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