New Daily Persistent Headache Support Group

Hi there. I have been newly diagnosed. I am 6 months into my experience. Jan.5th 2010. migraine with rt sided numbness. Went thru all the testing. All negative. I do have Sarcoidosis, so unsure if that is doing anything. I haven't had a spinal tap yet. But have tried about 10 meds, on Topamax and Savella. Tried Neurontin but no help. Had neck surgery in Feb. for a herneated disc hoping that would help it didn't. I have 2 episodes a month that last for 4 days where I am in bed with a washcloth and ice on my forehead in a dark room, and my husband has to take care of everything. I have had to quit my job because I might have 7 good days a month. I don't do anything anymore. I don't go outside, out with friends. When the DR told me this and told me to read up on it, and I found out that these usually don't respond to treatment and usually don't go away, I got upset. How have some of you delt with the severe daily pain and hell! And the people around you saying can't you take something to make it go away,like you haven't tried like EVERYTHING!!! Sorry, to sound hopeless, but just to hear how others have coped would really help! Thanks!

hi. Can you describe your headache? whats the frequency and quality. do you lay down alot.

My headaches are mostly moderate in pain (6/10) most days, until I get the severe where I am in vomiting, light sensitivity,in bed for days type. The regular days, they are pounding frontal headaches. Sometimes I feel my head will blow. I do lay down when I can but it sometimes makes it worse. I get nauseated, I do not vomit except when I have the marathons (which are about 2 times a month). My migraines in the past I have never vomited. The reason my DR got clued in was when I was explaining, ( I am going thru an issue with my work disability being denied due to his dictaion)I told him my daughter asked me " What happed to you mommy, you used to be so nice now you are so mean". Because I am so irratable. So he has switched from itractable migraine to this.

Post edited by: ddlxray, at: 07/08/2010 07:15 AM

Post edited by: ddlxray, at: 07/08/2010 07:18 AM

Hi and welcome, I think that sometimes the articles that are out there paint too grim a picture because they seem to make it an all or nothing sort of thing. Either you get completely better or nothing worked. For a lot of us we have not found anything that will "cure" or stop the headache but with extensive trial and error with meds we have found things that help get our pain levels more under control and make things a lot more bearable. I started out being around an 8/10 most of the time, but now I am rarely above a 4. Part of that is due to medication and part of it is that I have adjusted my lifestyle to stop provoking the headache, but life is much much better now than it was in the beginning. My meds are Topamax and Seroquel with Maxalt for an abortive, but as I am sure you know everyone has to find what works for them.

There is also often (usually?) some depression to work through while dealing with the chaos this headache makes of our lives so for a while everything tends to look more hopeless than it actually is. For me it helped to try to take things one day at a time, to adjust my expectations for myself to something I could actually acomplish even with the headache (for me it was doing at least one useful thing a day...sometimes brushing my teeth counted), and to work on improving the quality of my life from there. It was a slow process and some days were better than others, but giving myself credit for accomplishing things instead of always feeling like I was failing to get things done helped a lot.

The people who think they can cure you are just annoying...they do eventually stop being such pests (mostly anyway). I find it helps whenever they start giving advice to say things like "my neurologist is working on it, but so far none of the interventions he has tried have been much help" It may also help to use the NDPH name so that they know it is an actual condition, not just a "headache", but some people just like to talk and give advice and there really isn't much you can do about them.

Welcome to the group!

Thanks Mary and tortisegirl! It is so true about the depression. I have been waiting for my neuro to actually listen to me and that has taken me changing neuro's, and almost going for a third opinion! I have tried Neurontin,Maxalt,Migranol,Firocet,Fironol,and Midrin with no relief. I cannot take Imatrex or Trexamet. I refuse to take narcotics. When I do, it is only to keep me away from the ER, and even then it takes 2 oxycodons to even take off some of the edge.

Thanks so much for your story Mary. I know it's going to be a long road and I know there is always hope! I am just starting my journey and alot of you have been there way longer than I!

Sounds like you definitely need to try more preventives. Most of the stuff you listed is used for migraine or is just an analgesic. With a lot of trial and error, you may find a daily med that can reduce your pain significantly. Nothing wrong with doctor shopping as long as you only gets meds (especially narcotics) from only one doctor at a time. I have seen dozens of doctors and still get new info out of the new ones. Things have only got better for me over time with my headache, so have hope. My pain has stayed the same level yet I have learned to cope with it better and have meds that have brought it down, so my net pain level is about 50%. Having a medication to help you sleep off the worst pain days or help with any nausea you may have is also important in my opinion, as for me, my worst pain is untreatable by any medication dose. Best wishes.

Hi and welcome to the group!

Don't worry there is hope as most of us eventually find we do better, both through finding a combo of meds that help and learning to cope better with the pain. Some people also find that they get completely better. This tends to be more common when you have had your headache for less than 2 years, so you are still in this group!

Definitely find a doctor you are happy with and who is willing to keep trying new meds. While you have tried quite a few things there are more out there. For example I'm on a combo of Cymbalta and Seroquel and that has reduced my pain from a constant 8 or 9/10 to an average of 4/10 with only occiasional spikes up to 8 or 9/10.

You will find that what helps people differs and you need to try different things. There are some good posts around which have some info on what helps people, this is a good one to take a look at: http://www.mdjunction.com/forums/ndph-support-forums/ medicine-treatments/96227-what-has-helped-you-part-2