New Daily Persistent Headache Support Group

I found this website 7 months ago when I was first hit with these symptoms.

I read many things that helped me, and many many things that frightened me more than I can say. I would always log on somewhere else to get some HOPE, because I had to believe this crazy intense suffering that came on out of the blue would disappear back to blue. I read about all these medications with dread and fear and a desire to distance myself.

Today, finally, after 7 months of unbelivable pain and many of the drugs you all know too well, my doctor and I admitted that the diagnosis fit too snugly to be ignored. I had never had a migraine headache in 44 years, and suddenly to have a vibrant, full and exciting life suddenly crash into a wall has been the most devastating experience of my life.

I know you know, and I am so sorry for all of you suffering with this dreaded affliction. I am so sorry there are so many of us out here, and I am very grateful to those of you how have been willing to share your wisdom and experience. It is very lonely to be so sick...something I never imagined about chronic pain was the degree of isolation one finds oneself living with.

Inderal helps most...but I was very athletic before, and now can barely make it up hills on my bike with my daughters. Topomax floored me, made me incredibly stupid and didn't help at all. I am on birth control pills now for 2 weeks in the hope that managing perimenopause with an iron fist might help diminish the intensity of the headaches.

I read about dr. Rozen's 4 person doxycycline success with great interest, but of course a group of 4 has little statistical significance.

My MRI's, spinal taps, lab work...all normal. I use Imitrex sometimes, cafergot sometimes, fioricet sometimes...nothing has ever made it go away. When I am off the Inderal the pain is totally through the roof unbearable. On Inderal the pain is just TERRIBLE.

I will go for nerve blocks in a couple of weeks.

I am just glad to have a place where I know I will be understood.

Thanks.

hope

Hi Hope, I am sorry to hear that you really do belong here, but I certainly understand not wanting it to be NDPH. It isn't a very encouraging realization. Still even as bad as it is, it isn't hopeless (which is something we all have to work to hang on to).

I had to change my goals to pain reduction instead of getting rid of the headache completely (though if I stumble on that somehow I will take it). I am glad that Inderal helps you get the pain down some and I hope that you will find some other things that help you even more. The nerve blocks have been helpful for a number of people.

Above all, welcome to the forum. You are right that we do understand. We have all been there before. I sure remember when I first got the diagnosis and started to figure out what that really meant (on the internet mostly) and how difficult that was to come to terms with. I hope we can help with the isolation you are feeling right now. I know this group has helped me a lot with that.

Im sorry. It is so difficult. I am also glad that inderal helps. Have you tried diamox? Is been helping me a little.

hope44, please keep us posted on how your nerve blocks work for you. Do you know which nerves will be blocked? My husband has recieved several of them, some with limited success and some with none. I hope you get relief from them. You are not alone on here, so welcome.

Hi There,

Thanks all of you for your responses.

I am going to the anesthesiologist for a work up on Friday, and I will be sure to keep all posted about how it is going.

Thanks.

hope