Headaches and cocoa.

[Guest guest]

I havent participated in a long time. Had a huge flare in November with a killer headache. Seemed like the headache was "vascular" yet also seems to affect the gums in my mouth. Got pain killers and waited it out.

In my research I ran across a condition that may be part of the mystery: "chronic magnesium deficiency". Hardly ever diagnosed, it causes headaches. Apparantly difficult to accurately test for.

Cocoa is suggested. It is apparantly very rich in magnesium. Drink the unsweetened kind from the baking aisle.

I get a very clear prodrome to the headaches: a certain spasm in the face and ache in the gums. That's when I will make sure I drink it. But usually four cups a day. Seems to abate the headache thing. Not the total answer to RP though or I would be very happy indeed.

Give it a try. Clearly the most pleasant treatment I have come across. (People with magnesium deficiencies are also short on calcium)

scott

-----Original Message-----From: Carol Giordano Sent: Tuesday, April 02, 2002 4:13 PMTo: Rpolychondritis Subject: Re: update - to

- I hear you loud and clear, and have been thinking the same thing over the past few days. My diagnosis was in Jan, and just when I thought things were getting under control, bam - I caught a cold the end of last week and it's been a downward spiral ever since. I had even upped my pred again the week before because of other symptoms. I'm not on Metho (yet- he says it's coming), but I'm on Dapsone and just increased that, too. On top of all that, I found out yesterday that results of a brain MRI came back abnormal and have to talk to my neurologist about them this week. I've had three previous brain mri's over the past 7 years and they've all been fine til now.

I'm getting a little spooked, it doesn't seem like things want to work for me very well either. So know you're not alone, it may just take us a little longer to settle in and find our best relief, like some of these other "old timers" (no offense guys!) Maybe we'll get lucky like a few of our friends and hit the jackpot of remission for any length of time, that's sounds pain-free to me!

I'm so glad you had a good time in Hawaii. We went 3 years ago, and I spent 3 days in bed with one of my killer headaches. That's when I knew I had problems I couldn't really ignore - who gets a headache in paradise?!

Let's compare notes and see how we do. Hopefully the metho will kick in better for you soon, I 'd like to know so I have some idea of what I might expect, even though chances are, I'll be completely different as so many of us are with this "cRaP".

Welcome back and stay in touch,

Carol G

update

Hello all!Hawaii was very nice, I love the island of Kauai! It's truly a beautiful island!I was disappointed, because I never got to feeling better, and I thought with all of that rest and no responsibilities, I would. That was a little discouraging, but it gave me information. It let me know that I'm not doing too much by working.My body has not given me one day of "no pain" since I got this condition in December. The pain is definitely a lower level than it was, probably due to the medications I'm on, and I'm very thankful for that. It makes me wonder if what I have is the "smoldering" kind of RP, or if everyone experiences a level of pain daily?Any insight or experience sharing would be appreciated. I know that the medication (metho) can take a long time to really kick in, but I'm on 17.5 a week, as well as 30 mg. of Prednisone a day, and I guess I am expecting more results.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU