Monday, June 14, 2010
Recently, I had a doctor's appointment I'd like to share with you. I've been to many, many doctors who call themselves "headache specialists" but really aren't. Not to say these aren't all fine doctors, just not "true" Migraine specialists who treat people with Migraines all day. This doctor actually...
I'm so glad you are happy with your experience. Your headache experience sounds very similar to mine in that I to wake with headaches daily and am at a 1 or 2 daily with occasional 3's on that scale. I went to a doctor at UMDNJ who was a Migraine Specialist first and she had me try many meds. She did have me try botox but it didn't work for me. I switched from her to Jefferson where I have gone now for the past year or so. I tried the DHE out-patient which didn't help my headaches, is your doctor referring to 5 day in-patient or 3 day out-patient. They usually try out-patient first and then in-patient if that doesn't work.
I've been hesitant to check in for 5 days and don't know of anyone else who has done this but the doctor thinks it is the next step. I'm still trying meds. I too have neck pain.
I'm glad you had a positive experience, I had been to a few doctors before Jefferson who I would not have spent so much time with had I known that it was that important to be at a Migraine/Headache specialist.
Good Luck.
Patty
Hi Patty,
My doctor mentioned both the out patient and inpatient routes. Still thinking on both of those. You tried the three day out patient DHE and it didn't do anything to reduce your chronic head pain?
Yes Nancy, I went in to Jefferson in Philadelphia for 3 days in November of 2009 for out-patient and it didn't touch the chronic daily headaches I have. Mine don't respond to anything though. The doctor feels the in-patient can try more medications via IV so she does suggest I seriously consider that option but I've not decided to do that yet. The other people in the room with me had been there before though and they did get relief from the treatment so it does work for many.
I am apparently particularly resisitant to medications and treatments, I've tried a lot of different things with no luck so far. I really thought that would work, I also thought botox would make a difference. I just keep hoping.
I know that if I was in-patient they could try one drug and if it didn't work, switch to something else. With out-patient they stick with the same treatment hoping it will start to work. The first day is a lower dose and it is increased, but it didn't work for me. I hope it would work for you if you decide to try it. It didn't bother me much, I didn't have any real side effects other than being really tired and having a headache of course. I would give it a try if I were you. For me it is only 30 minutes away so it was definitely worth a try though my co-pay for my insurance ended up being over $1500 which I didn't find out until afterwards but it would have been well worth it if it had worked.
Patty
Wow, I am just beginning my journey through filing for disability. I have a attorney for the social security part, today I applied for long term disability at work, and one of the doctors I work with told my mother at her office visit that they would probably fire me. So if I didn't have enough stress in my life, add that to it. I am seeing a Neurologist who is checking with the insurance company to see if they will pay for Botox, but I don't have much encouragement, its not on the list of meds they will pay for. I am on multiple blood pressure meds from every category they use for prevention, ((Yes I have severe HTN). I am on 2 anti seizure medications, antidepressant , antianxiety, and seeing a Physchiatrist, who made me feel as if I was drug seeking, because of the list of meds I am on (the pain Meds) which I use only 3 days a week if then, because of possible rebound. A icepack is my best friend along with a dark quiet room. Please tell me it will get better, pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee.
My insurance paid for botox because I have neck problems also and when we did an MRI of my neck it showed some problems there so they submitted for the botox for that and the insurance ok'd it. It took a bit of paperwork but they did end up paying for it. Just thought I'd mention it.
Good luck. Patty
Thanks Pattie,
I'm just trying hard not to use my pain meds more than 2 days a week, although my neurologist says 3. Its getting old the daily migraines, with only a few hours break between them. I can't function at work, God knows I don't want to make a mistake and cost someone their life. I'm just frustrated, scared and angry.
JKM
Thanks for your input, Patty. I'm still giving it some thought.
You might want to consider seeing a Migraine specialist too
I'm so sorry to say it does not get better. The journey on disability only makes it worse! I had beeter luck with social security than with long term disability. I started my leave in Jan. of 2009 and I never got any money from anybody until Nov 2009 and that was from social security. My short term disability company refused to pay me. If anybody has AETNA for short term disability I feel very sorry for you. They are the worst company I have ever dealt with in my life! Social security was a breeze compared to them. I thought I was going to have to get an attorney too, but it was easier than I thought. Hang in there! It's a long road.
Thank you! I kinda realized it was going to come down to this. One of the doc's that I work with at the hospital, said" you know they are going to fire you!" Right now I don't care if they do, I feel so bad, I don't want to hurt anyone in my care. Nearly hit a jay walker today, because it wasn't registering that they were going to do it. I'm just so tired from all the meds and not sleeping, The topamax makes me forgetful. I feel nauseated from the meds and the migraines, Im just frustrated, it helps to come here and read and know others are out there going through the same things. I do appreciate you all. I may sound witchy, but you are cared about and I do appreciate all your input.
JKM
Have you thought about taking a FMLA leave? Then they wouldn't be able to fire you and you can take off when you are not feeling well enough to go to work. It's a federal leave that protects you. Maybe you should check into it.
I've used all my FMLA and my short term disablility will be up at the end of July. I've been there 20 years. But right now I feel bad enough I don't really care. Guess that sounds bad, but I never thought pain could get you down like this, now have a new understanding for patients with chronic pain issues.
Do you have any long term leave of absence plans at your job? I did at mine. We were allowed to take a year off and then we had to either come back, quit or be fired. I ahd to quit after 16 years because I was in no shape to return. I totally feel for you. If you have any questions that I can help you with, feel free to ask. I have been down this same road and it sucks!
Yes we have long term disability plan, it is with Cigna, they are in the process of talking with my physicians that are treating me. They are also sending me papers to fill out. So we will see where it goes from here. I'm just getting very cranky, and I'm usually a very quiet, easy going person, and thats even being a critical care nurse. But I don't do ill well....
I hope you find some meds that work for you. I have tried everything on the market and the only thing that makes evevn a tiny bit of difference is Topamax. I am going to try Botox next month. I am basically a guinea pig for whatever they come out with for migraines because I am trying to get any type of relief. I have pain everyday and I have a 4 year old son that this disease also impacts his life. I try not to let it, but it is difficult.
God love ya, I lost my son when he was 3, I remember having migraines once and a while, but nothing like now, God was good and knew he needed me, (he had hemophilia). I will keep you in my prayers
Thank you. I will do the same for you as well.