New Daily Persistent Headache Support Group

Hi,

My name is Laura and I am new to this site. I was diagnosed with NDPH last Aug - woke up on May 31 with the severe headache and still no relief in site. I was wondering if anyone who has NDPH noticed any sort of strange rash on either their arms or legs and, if so, when in the course of the head pain the rash appeared. What did your doctor(s) say about it? Thanks for any input.

Hi LauraP, Welcome to the group. I am sorry that you need to be here, but I can relate to waking up one day with a headache that won't leave (I don't remember for sure if I had mine the moment I got out of bed, but I had it by breakfast).

The only time I had a rash with mine was when I took a medicine that I was allergic to. And my rash was ITCHY. I had an almost immediate reaction to the medication which is apparently unusual. Most people's takes longer to show up so if you are taking any sort of new medicine or eating a new food that might have something to do with it. If that isn't the case then I really don't know, but it is worth mentioning to your doctor in case it means anything to them.

Laura,

Welcome to the forums. My husband also woke up one day with a headache that hasn't gone away. He did not have a rash or any other symptoms at the time.

Where were you diagnosed and how are you being treated? Has anything helped?

I was diagnosed here in St. Louis at the end of August with NDPH. Dr. Rozen at MHNI confirmed the diagnosis this Fall. I was inpatient at Chelsea in Ann Arbor for 21 days, and unfortunately, Dr. Rozen & his staff were unsuccessful in breaking the pain. I actually had the rash biopsied before going to Michigan and now know of two other NDPH sufferers who've had this rash. I'm trying to do some research on it. It's been blown off by the docs, but I know there's a connection -- just don't know what yet. Three is not a huge number, which is why I joined the forum (other than for support), to see if others had something similar.

I'm taking 1200 mg of Neurontin 4x/day (4800 a day) and a cocktail from Dr. Rozen. Some days it seems the medicine helps a little, and other days not so much. Most of the time I have a 7/10 (3.5/5 if you're at MHNI) level pain 24/7. I'm thankful that I can sleep again and eat again. The summer was rough with the nausea, dry heaving and difficulty sleeping due to the pain.

I'm blessed that I'm functional again but never without a pretty high level pain. My kids are 9,6, and 3 so this has been quite a challenge. It's comforting knowing that I'm not the only one.

This is a pretty broad question, but I'm wondering also if any of the NDPH sufferers had any contact with the ocean, a pool, or hot tub in the 24-48 hours before getting the headache. Or if anyone participated in anything that may have caused any "whiplash" effect to the head or neck. I just keep thinking if we can all come up with some commonalities, it might be helpful in finding a cure.

Laura

I thought of another rash, though I did not have it. One girl who was here for a while was eventually (finally) diagnosed with Lyme. She had a lot more symptoms than just a headache and it took forever for her to get diagnosed because her screening test came back negative for it (though those things are not known for accuracy), but eventually she got further testing and did have it. So if you have other symptoms or if the rash might have been remotely "lymeish" that might be a direction to look.

As far as the other questions I had no contact with the ocean (I wish), hot tub, or a pool or any whiplash before my headache. I have no idea what set mine off. A number of people here had been sick with some type of illness (sinus crud, flu, mono, ect.), some had minor surgery or were doing physically demanding activities (high altitude hiking). I am still puzzled over mine...I don't remember doing anything interesting.

Laura, It sounds like you have been through a lot in a short period of time looking for an answer. My husband also did Dr. Rozen and MHNI/Chelsea without any lasting relief.

No to the ocean or pool. Hot tub is a maybe (we don't remember) since we did have one, but since he got his headache in the summer, I doubt it. Also he has had whiplash injuries in the past, but not right before the onset of the headache.

Thanks for the quick reply, Mary. I also had a mild cold virus prior to the HA onset, and I know that's pretty common with a lot of NDPH sufferers. I just hope someone can come up with something soon for everyone -- there are so many people suffering with this, but so many suffering with much worse. I am grateful for so many things that in the past I seem to take for granted, so like everyone else, I'm just learning to live with it and try to make the most of every day -- some days that's easier said than done!

Laura