New Daily Persistent Headache Support Group

Hi Sodope,

thanks fo ryou rmessage.

Yes, neurologist who are not headache specialists don't get it and don't know. a headache clinic is the way to do it.

I dont know about that med, but I will ask my doctor.

I did have blood work done, and urine and an MRI. I am very lucky, my mother is a physician and she is a headache specialist! Oh, the humor of the situation! so she was very aware of what I had and she tried to help me from the beginning! when she realized she didnt know what to do she consulted with colleagues

I dont live in the same place as her and I got the best neurologist headache specialist we could find.

I did do antibiotics in case it was an infection, but it didnt help.

steroids did for a bit.

what happens with me is that most things help me, for a while, and then they stop helping me.

does this happen to anybody else?

lovely rainy less painful day to all!

K.

FloatingFrog-Sorry I wasn't clear...I haven't been to a big name headache clinic, but I've seen plenty of headache specialists. I think I'm up to 10 headache specialists, but I lost count of doctors at 50 or so lol. Wow you sure got the short end of the stick with acupuncture, as everything I've read says its not painful. I would try medical marijuana if I wasn't working. I may have to get drug tested at work and there unfortunately isn't any employment protection with getting a card (nor is their federal protection which also scared me). Plus, its tough to get it here in WA even if you can get a card.

Sadly its legal to go to work on pain meds but not to try medical pot on the nights/weekends. Does it help you for very long after taking it? I've read that for pain you would have to keep taking it every few hours (maybe less often if you eat it). If I couldn't have pain control without being impaired it would be no use for me--I can manage pretty ok except for at work. I don't think ingesting pot at work is ok lol. I'm actually on long acting narcotics as its what I've found most helpful. Only got to that point after 3.5 years into the 6.5 years though. I surely don't tell my employer though. If I did have to get drug tested at work there is protection (with a prescription they have to report back a clean test). I'm lucky I am more functional on them than off (I still go to work & drive), and have a doctor willing to prescribe what some would consider a high dose (plus I'm on three of them right now).

So can you work out without the increased pain now? In the beginning I also seemed to be more sensitive to it, but now I can tolerate some very light exercise with only a little pain spike. I'm getting back into doing some time on the elliptical. I don't get anywhere near a good cardio workout, but its sure something. I've never been into exercising, but I liked to stay in reasonable shape. This headache isn't good for your waistline between the meds, tough to work out, and I need to snack all the time or else I feel ill. Best wishes.

It is fairly common for meds to help for a while and then the effect to wear off. This has happened with several meds, topamax and cymbalta are 2 that started out working and then didn't do much by the end. Sometimes if you go back and re-try them after a break they do work again though.

Hey,

Thanks for all the further advice. Over the last month I've been on a course of steroids (prednisone: they started me at 80mg and then decreased it gradually over 3 weeks), and that seems to have actually done something, a little bit. I really had some periods where I didn't feel my normal head pain at all, I think, for a few days about 1 or 2 weeks into that treatment (although there were other unpleasant side effects). My pain seems to have returned to its normal level since I've been off the prednisone, which is disappointing, but I'm hoping that the fact that it seemed to have some effect will give my neurologist some ideas for further treatments?

I've also been getting acupuncture and seeing this nutritionist/natural medicine guy who is convinced that inflammation and my apparently severely unbalanced hormone levels are a part of the problem and has me cutting all dairy and grain out of my diet and taking supplements to see if that will help. I don't know if any of you have tried anything like that before, but at this point I'm pretty much trying anything.

Again, thanks for the further recommendations.

Laura

Not sure I agree that since the steroids helped it gives your neuro ideas. There isn't much to them besides that like other meds they can be used to try to break a headache or knock it down for a bit of time. Lots of folks don't tolerate them or don't get help from them though (like me-they are on my I won't ever take it again list). I can say that if you have future pain exacerbations, they may then think of prescribing the steroids again in hopes to bring it back down. It depends on the doctor, but most would feel its safe to take them a couple times a year. To have a couple good weeks at least gave your nerves a break!

I'm kinda against the idea that diets, acupuncture, chiro, etc, can cure NDPH. I think some folks may see a bit of a pain drop, but I don't see any reason why something like that could have triggered the headache. It can't hurt, but I wouldn't be spending my life savings on it. I guess I'm a bit of a cynic at this point at all the times I've tried something because someone swore it would help me. The folks who claim they know it'll help are the ones you want to beware of. You want someone to say they hope they can help you.

Beware of the supplements. Please run them by your doctor first as some can actually be harmful. They are not widely tested (especially in people with health conditions on prescription meds) or regulated and its hard to know what is a safe dose. As far as natural stuff goes, I think working through some basic food triggers (some folks are sensitive to dairy or gluten) on your own can be worth a try, as is massage and physical therapy. I personally would stay away from chiro and supplements (except stuff like Vitamin B and D under doctors orders after they test where your levels are) with what I know now. Good luck!

I'd be very careful with the Prednisone treatments. They gave me Prednisone IV treatments over the course of a few days and I lost all control of my temper and other emotions until it finally wore off. They said it "may" make me feel angry.... That was an understatement!!!

It did nothing for the headache, but sure made me a bear to be around. It scared me so badly that I tried to just stay away from everyone for fear I might do harm to someone.

Be ready...

Lcremer, My neuro's have used methylprednisolone IV infusions 500mg for 3 days very successfully on my headache. It can help break the pain cycle or MOH (medication overuse headache) however it must be used with caution and only occasionally as steroid have serious long term side effects. The only side effect I had during the infusion was restlessness and insomnia, but sleeping tablets got me through it.

I second the idea of looking into Lyme again given your symptoms and the fact that you live in a Lyme endemic area. Most of the existing blood tests are highly unreliable and a lot of doctors are not very well-informed about the disease. There's a new blood culture from Advanced Laboratory Services (http://www.advanced-lab.com/spirochete.php) that is supposed to be much more accurate than the existing tests. You might ask your neuro to order it for you. It's a good test to do early on because you have to be off antibiotics for at least a month at the time of testing. Hope that helps.