hi michelle. i have had these headaches for 3 years now.you name it, i was on it. nothing has helped at all. i do not have migraines. they are called new daily persistent headaches.they do not respond to any type of medication. i live on oxycontin.percocet and xanax. not good. that doesnt even help most of the tome. i dont leave the house. go to this site. mdjunction.com. you would be suprised how many people have these type of headaches. i am going to michigan because dr rozen seems to be the only one doing research right now and has helped some people. then on the same site type in nerve decompression surgery. i feel like i have a vice grip around my whole entire head and somone is twisting tighter and tighter. my neck hurts so bad. all the nerve endings are over sensitized. i just want to give up. my dad just died in april . its just me and my mom. i miss him so so much
talk to you later
hi michelle, you wont be out of it at all. the lidocaine is usually mixed with depacon and benedryl. it is not a constant drip. i think it was every 4 or 6 hrs.it is supposed to try to break the cycleof the headache. then they send you home with mexiltine and lyrica. the mexilitine is what is supposed to take the place of the lidocaine. they will increase the lidocaine dodage as the days go on. sometimes you can hallucinate on it. i did once, so they then lowered the dosage. dont be scared. it was not bad at all.yes give me your e mail. do you know of anyone who was put into a comma for headaches? i had everything you mention. trigger point facet injections, botox twice ,couldnt tolerate the dhe. had keppra infusions in n,y. in michigan he does droperidol infusion i hear. down in michigan they keep trying a combo of meds. i am not looking forward to being detoxed. and they are making me sign a contract that when i leave there i will not take anymore pain meds or that will be the end of me. thomas jefferson did that to me the last time, so i couldnt go back there. dr rozen from michigan keeps in contact with who ever your neurologist is where you live. if something isnt working, you call rozen and he calls your dr and you go to your doctor and the meds are changed then. you might have to fly to michigan three months after you are released. then maybe once every 6-8 months. we shall see.
will talk to you later
hugs to you too
dont forget to ckeck out mdjunction.com about headaches and the nerve de compression surgery. only two places do it. in washington d.d. and houston. you can read about on that site. a 16 year old girl had it and she is headache free
The two times I've been an inpatient at Jefferson (in two different hospitals) I was able to wear my street clothes. If you are doing the IV lidoicaine, I bet you are going to be in Methodist. They have only a little wing for the headache patients, so it is not going to be the same experience you had a Michigan or if you went to Diamond. You are able to walk around if you want. I didn't much. And I wasn't heavily sedated either (but it takes large amounts of med's to knock me out anymore). I don't think there will be a problem with you eating at the cafeteria, but I don't know for sure. I was by myself while I was there, so I ended up ordering food most of the time. The nurses are uber nice, which helps a lot. Oh, they didn't have a good internet connection. I was barely able to get on and most of the people on the floor couldn't using the internet there. If you can afford it, I would recommend getting one of those internet cards through verizon or sprint to cut the boredom out. But then again, I'm currently addicted to hulu. :O)
How long have you had these headaches? Where have you been? What have you tried? Recently, I’ve read this book called “All in my head” by Paula Kamen, which has helped me a lot deal with these headaches.
Let me know if you have any other questions. I’m actually going to be visiting another patient of the JHC while he is in the hospital next week. He has been a patient there for much longer there than I have been and I’ll be glad to pass along any questions to him. (I go back and forth between Diamond and Jefferson). I hope you are having a good day.
I understand completely. When I was younger, I use to play Mortal Kombat on sega and there was a quote that started off the game that I've never forgotten. It goes: "There is no knowledge that is not power." I think the better armed you are the better off you will be.
The thing with the IV Lidocaine is that you really cannot shower. You aren't supposed to be unhooked for more than 15 minutes MAX, so it is kindof rough. The rooms are private, so that is a major plus. I didn't really feel like walking around, but I think that is just due to the general tiredness I feel with my headaches. (They just drain all my energy away). So, I mostly just watched DVD's on my computer. If I remember correctly, the nurses were pretty lax about the visiting hours, but I can't say for sure. I didn't have anyone staying up there and just helping me out. I know at Gibbon hospital, they were really chill about the comings and goings of visitors.
I understand the feeling about not wanting to attend those classes and whatnot. I feel the same way at Diamond, because they make you do biofeed back and biofeed just doesn't work for me. I just never been able to manage it once in over 25 tries. But there was one thing that I did find really helpful, which was the support group that they put together. I find it helpful to be able to share my experiences with people who understand and really know what pain is and what it means to "fake" it. I haven't really been able to find anything like that (except for this website) and I think it really helps. Similar to you, I grew up with headaches and started having migraines when I hit around 16. But designer drugs and sleep where able to handle them. Then in '06 they started to get a little worse and finally on Sept. 22, 06 I woke up with a headache that has never gone away and I experience terrible migraines that make me not able to move. My real problem comes in is that my headaches are really resistant to treatment and drugs, plus I hyper-metabolize medicine, which gives me only a short shelve life with it. Oy vey! I think this is part of the reason why I have to jump from place to place, because I use up all there tricks they have within 1 year- 1 1/2 years. Anyway, that is enough of my ranting.
One more thing I wanted to remind you. I hate hospital food and the nurses have a ton of menus, so they will help you order food out. Just ask them for the menus! :O)
Good luck and please feel free to ask me anymore questions. I’ll try my best to answer any of them. I hope you feel better.
The IV Lidocaine worked for about 1 1/2 months more or less. During that time, I felt more like a human being than I have in years. However, it started failing for me soon after that mark. I've heard that some people have a great success with it, especially after a couple rounds of it. My biggest fear is that like everything else I try, the second and third time it just isn't going to work. However, that is specific for my body. I was there for 8 or 9 days I think. (I've been in and out of treatments so often that I'm starting to forget)! I have also tried IV Ketamine, and that didn't really work for me. The reason for the two hospitals is because they have there own little ward at Methodist for just IV Lidocaine and the other stuff like the IV Ketamine is done under at the other hospital. The only main difference I've found is that you can get better take out with Gibbon being in the middle of the city! :O)
With regards to other treatments, I have also had 6 rounds of DHE done (some with my local doctor and some with the Diamond Headache Clinic [DHC]). I've had trigger point injections done with my local doc and have nerve blocks done at DHC. I have probably been on over 75 different med's by now as well. I have done the chiropractor and some physical therapy. I need to call the acupuncturist and start that up asap and try that route as well. I'm not a huge believer into "alternative" medicines, being raised in a very westernized scientific family; but I am willing to give acupuncture a shot. Plus, my insurance will pay for it. (Go figure right)?! I've been offered Botox, but I don't know if I am willing to go do that just yet and my local doc doesn't have a good feeling for me with it(and he has been with me since the beginning).
Don't worry about the questions. Keep asking them! That is what we are all here for! :O) I love this website and I find it to be a great resource. Let me know if you have any more.
Hey there Julie,
I have had some success with all the treatments; it just depends on how you measure success. The IV Ketamine got me through a wedding that I was in a couple of days after it was done, but soon after that it was null. By the last round of DHE, it was pretty pointless. The best immediate result I've had was with the IV lidocaine, except for the fact that I ended up in the ER with a killer migraine the day I got released. I think I just rebounded badly and I know that is not usual. But then again I am usually weird when it comes to side effects. At one time I was on Cymbalta and it caused me horrible stomach pains. I went to several doctors saying that it was the Cymbalta and no one believed me until I saw a GI specialist, because the side effect is just that rare. Along those lines, I don't remember why I couldn't take Lyrica, but I was only on it for 3 days before having to be taken off of it. And I have to be careful with Topamax, because I get the dopamax side effects badly if I dosed to high. (It was the worse when I couldn't add up my uno cards to 10). I think in the end, my body just really hates me.
When I first came down with the headaches, I had a migraine that kept rebounding for two weeks and eventually put in the hospital for 5 days just to the pain under control. During that time, I was on daluidid, morphine, valium and bunch of other stuff just to keep me sane. Fortunately, I haven't had to be hospitalized for pain since this last Feb and it was for only 2 1/2 days. The hardest thing for me is just trying to keep a job, even when it is just part time because I am just that unreliable or I would have to be on something to get through it, which puts everyone at risk. I guess my major problem is that my pain level constantly varies as well, so it is hard to figure out where exactly I am going to be at any given moment. I have come to realize that I do better in the mornings and I generally (not always) have about 45 minutes that I am pain free and it slowly builds up. I know when the day will be bad when it starts off with pain or I wake up due to the pain. I think I also have a fairly high threshold for pain, especially experiencing every day for almost 3 years now. I was actually talking to some member of the Buddhist temple that I attend and they tell me that unless I tell them they never think I'm actually in pain, because I never show it. Overall, I hate showing pain because it makes people feel uneasy and then it makes you seem like you are fishing for sympathy or even pity. I know when I go visit my parents, I try to remain as stoic as possible because it unnerves them so much and just makes them feel all that more helpless in this terrible situation.
I currently live in Arlington, VA and have pretty easy access to Philly and Chicago. I am also 26, not married and my parents are well off enough to be able to support me not having a job and have the ability to pay for private health insurance and doctor visits. Without that, I'm afraid I would be in terrible shape. But I know just how lucky I am. I really do and I try not to take it for granted.
Thanks for passing along that website. I plan on checking it out. I am also glad to run across you as well. While both of our situation suck (to put it bluntly and mildly), it is nice to know that you are not alone. And I do have some hope when it comes to the DHC. Through patients at the DHC, I've heard really good things about the doctor I will be switching too in Sept. (I started off seeing another doctor in the practice). I guess all I can do now is keep my fingers crossed.
Has anything worked better for you?
Take care of yourself.
Post Edited (korbnep) : 7/22/2013 9:43:06 AM (GMT-6)
Post Edited (MigraineGal) : 1/29/2016 3:51:27 AM (GMT-7)