New Daily Persistent Headache Support Group

I have had a headache for nearly 3 years. Several neurologists, trigger point injections, occipital and sympathetic nerve blocks, meds galore and still have headache. I am likely dependant on my pain meds (vicodin, more recently changed to percocet). Yesterday I had my first visit at Jefferson Headache Center. The recommendation is an in-patient hospital stay of 5 to 7 days, during which they will take care of my dependence problem and use a number of drugs via IV to find the one that works to "break" the headache. Then they will establish the drug(s) I should take for prevention and drug(s) I should take should an attack occur. Has anyone else done this? Would love to hear from you.

Thanks and love to all chronic pain sufferers - especially those with headaches!

I also went to my first appt at jefferson 2 weeks ago. There was a woman in there that did the hospital stay and she said she has very few headaches now.When she gets one the meds help. They mentioned it to me I might have to think about it they did nerve blocks on me only lasted about one hour.But they said there other kinds the can do.I did like everyone at Jefferson they were all very nice and seem they try everything they can.

Thanks Headie! It just kinda felt like a "sales pitch" to both me and my husband. I sure don't look forward to a hospital stay, but I suppose I'll do it because nothing else has helped!

I have never been inpatient so I don't really have any personal experiences to draw from. I have heard that some people are able to break the headache while others don't manage it. Most, I have heard from did get some significant pain relief from their time in the hospital. Please let us know how it works for you.

Thanks for the reply Mary. I wrote a letter to the neurologist with a bunch of questions. He called me today but I still have concerns. He advised that Jefferson admits about 10 headache patients a week (approx. 400 a year). Of these patients about 70% leave the hospital headache free, but do have a recurrance of headache that they find easier to control due to info gathered during the in-patient stay. I'm worried sick about withdrawal from pain meds. I take a lot of pills in order to dull the head pain enough to function so I assume I'll have a terrible time getting off of them. Dr. assured me that they will be able to help me as an in-patient so it will be easier than attempting it at home. Another thing that some may find to be an irrational concern is that I am a long-time smoker and Dr. advised that they won't allow me to go outside for a smoke now and then. Nicotine patches will be supplied, but I think that withdrawal from pain meds and trial and error IV meds to "break" the headache will be quite enough for me to tackle at one time without trying to kick smoking too. It appears that they are immovable on this subject. This is a true issue for me... and I don't know what I should do. Yes, I know I should quit anyway, headaches can be worsened by smoking, etc. Can they really stop me from going outside? I'm not a prisoner or a criminal!

I'm afraid of being in-patient for a week or 10 days, afraid of the withdrawal from meds, afraid of the cigarette issue. Bottom line, I am afraid - but I have to get rid of this headache somehow!!!

Anyone have any input to provide? I would appreciate it very much.

Doing all that at once does sound scary. I think it would sound easier to do it one at a time, but it isn't really possible to do it that way (maybe with the exception of the smoking thing, but I have no idea how much that really might be contributing to the headache). If the IV drugs work that could help a lot with getting off of the pain meds (at least you wouldn't have all the underlying pain to deal with) and you would be medically supervised while you do it. Still really scary. I also would be really scared just to be in the hospital that long. I don't like hospitals in general. They smell funny (Don't know if Jefferson does or not, just in general). I expect they can't stop you from going outside, but they may be able to stop you from coming back. You may have to sign yourself out of the hospital to leave. Probably not worth it for a smoke break, and if they are that adamant about it I would wonder how much it is really contributing to the headache. I would have though they wouldn't care that much. If it is a big factor or could prevent other treatments from working then I guess it makes more sense. It is probably worth it even if it is scary since nothing else seems to be working for you. Obviously the pain meds are not a long term solution for you and have about reached their limit. It may be a really scary week to ten days but the thought of trying to keep going the way things are may be even scarier.

Those of you who have done inpatient- What was it like? Would you recommend it? Was it worth it for you? Any hints of how to make it easier?

Thanks Mary. I would really appreciate hearing from those who have done the in-patient program at Jefferson. It would be wonderful to know what they experienced and may ease my mind somewhat. Constant headache for nearly 3 years (and massive pain medication use) has clouded my thinking I'm certain, and my poor family and friends are tired of their supporting role in all of this. Everyone expects me to be excited about going to the hosptal and getting "cured." Cure is likely elusive I know - but those who do not suffer from chronic pain think it is easily obtained if I would just do what I am told.

Please, if anyone has been in the Jefferson in-patient program, or knows someone who has, kindly provide any information you have. I'll be sure to do so if (when, I mean) I can force myself to go through with it!

My take on the doctor's view is that smoking is not likely contributing to my head pain, but they want me (and everyone) off of the nicotine in general. Would be nice to kick the habit for sure, but I'm afraid I'll go totally mad locked up in the hospital while detoxing from narcotics and nicotine simultaneously!

Ah... Merry Christmas and a Happy New Year! Maybe this will be the year I obtain some real relief. My best to all of you who suffer - I pray for all of us nightly.

Cannot say we have a good experience with Jefferson. Quite opposite, my husband is merely survive their treatment. He got a very serious heart condition as a result of totally uncontrollable treatment by Jeffeson so-called great doctors including their famous director. So , would suggest be very careful . He also trust these doctors, but it is a just a different business model. You come to their office and after spending a day at initial appoitntment start believe their experience. It is BS. NOthing else.

Hi Lynda welcome to the forum. Sorry to hear your husband's experience was so bad. Is he doing all right now?

Thank you, Maria

Unfortunately my husband's heart condition is a very serious he is disable. He still has headaches. But , I can say one thing. It would be much much easier to suffer headaches compared to what he got as a result of the treatment.

Prior comming to Jefferson, he was trying many things to alliveiate his chronic headaches. Some helped , some did not. Relaxation and massage had helped him but for really short time.

My word is just a warning to people who trust Jefferson's center image.