New Daily Persistent Headache Support Group

Hey all,

It's been months since I have been on the boards. I'm glad I got here today because you all are such needed support.

My neuro at Johns Hopkins has given up on being able to treat this. He told me the first time I saw him that less than 50% of people with this diagnosis ever found relief. So, I had hope, but I was not counting on a "cure." I appreciate the fact that through him I finally had a diagnosis and an expert at a prestigious clinic to tell me what I had suffered from. For more than year before this, I had gone to doctor after doctor trying to get help. It's a shame the medical community is so ignorant about NDPH. I have gone to a new neuro and she ordered an MRI of my neck. At least that was something no one else had thought to do. There was however nothing on the scan to indicate a reason for the headaches. She did the botox treatment (I am willing to try just about anything), and it was no help. Now all of my eggs are in one basket- the pain guy.

I will be seeing a pain management person in June. The only things that ever give me any form of relief are narcotics. Oxcodone, for example, will take the edge off for about 2 hours, so I only take it on my very worst days. I'm not sure what the implications of all of this are, and I darn sure don't know what I am supposed to do in my life at this point.

Thanks for listening!

Lydia

I am sorry to hear that your neuro has run out of ideas, but I am glad that you do have the pain management lined up already. I haven't been to a pain management specialist yet either, so I have no idea what the implications are (or even if there actually are any yet), but I hope that they will be able to help you finally get things a little more controlled.

I have been in your boat unfortunately. If you have been through doctor after doctor and tried and failed the typical treatments, I do hope a pain doctor can help you. After a few years with this headache I also went this route. I've been on daily pain meds for a few years now and can say that they have helped me. For a short amount of time I was getting 50% relief, but I have built such a tolerance to the meds I can't seem to get close to that anymore. They may also have some different injection ideas (I was recently told they can do nerve blocks in the forehead, not just occipital), a nerve stim, alternative treatments, etc.

Feel free to message me if you want to chat about the pain management route. I'm glad I went that way (as its been the only thing to help), but at the same time I also wish I had held out more as now I'll be chasing that relief which I probably won't be able to get again. Doctors have their comfort level with ceilings for pain meds. Chronic headache often requires quite high doses to begin with, so one you add in tolerance, its easy to get to a doctor's comfort level in a couple years. I hate when doctors say they give up, but at the same time I appreciate when they actually tell me this, vs. stringing you along, offering very little in the way of treatment (grasping at straws). Best wishes.

Hi and welcome back!

I"m sorry to hear your neuro has run out of ideas. It seems to happen that when some doctors have tried all the med combos they know they get a bit stumped. You might find another doctor has fresh ideas. given most of the drugs that people in this group find useful are not traditionally used for treating headaches it can often take some unconventional thinking to get a good outcome.

The pain management option is a great one. My neuro is also a pain management specialist so he has used some different ideas with me. My other suggestion is to give us a list of what you have tried over the time you've had the headache and we can maybe come up with some suggestions of meds to talk to your doctors about. There is always something that has worked for someone that you probably haven't tried yet.