I'm thinking about doing the Jefferson In-Patient program and am trying to find out more information about it from someone who has gone through it. What should I expect from the program? What is a typical day like? What is the environment like? Any information to enlighten me and ease my nerves would be greatly appreciated.
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6/ 1/10 5:54pm
Hi Cyn.
I've not done the In-Patient at Jefferson. I did the 3 day out-patient infusions and it didn't help me so my doctor has been encouraging me to do the in-patient. I too have been considering it but haven't yet. I'd be interested to see if anyone had luck with it. I get migraines but not very often, my primary problem is chronic daily headaches 24/7 which don't respond to any medications. I know the other people at the 3 day felt they were getting relief from the 3 day infusions but they were there for migraines. Have you tried the out-patient already?
Patty
6/ 2/10 5:50pm
What doctor do you see at Jefferson? I see Dr. Nahas. She has told me that many people do well and have luck with the in-patient but I also haven't found any to talk with. She does suggest it at each visit though. I have considered trying to switch to Dr. Young if I continue going to her and continue with chronic daily headaches since I've been seeing her for over a year and still have them. People here have suggested I try him to see if he suggests other options. She is nice and knowledgeable but it is frustrating to keep going for so long and not get any relief.
Patty
7/19/10 2:41pm
Hi Cyn,
You may have already gone to the Jefferson Inpatient program by now, but I thought I would share my experience with you in case you hadn't.
I was recently an inpatient there (got out last Thursday). I have previously done the outpatient infusion treatment - about 2 years ago - with no success. I kind of felt like it wasn't quite enough time to totally knock out my headache. My doctor, Dr. Nahas, has been suggesting since then that I try the inpatient program. I've resisted until this summer, but the headaches got too bad and I finally said OK. To make a long story short, I was in for 8 whole days! I fully expected to be out in five! However, my headaches are very stubborn. I was given Lidocaine, Magnesium and another drug (can't remember the name) for pain. DHE makes me sick to my stomach. Also drugs to keep the little nausea I had at bay. This was all given intravenouly via a PICC line. I went in with a 10+ headache, so maybe that is why it took so long with me.
Dr. Nahas stopped in every day but two and on those two I had Dr. Silberstein and Dr. Marmora. So, that was really nice - I could ask her questions when she came around.
I want to say that the nursing staff was incredible. They were all so nice! Food was average, but it's a hospital and you don't feel like eating that much anyway, at least I didn't.
As for classes for biofeedback, breathing, etc., I didn't do any of them because I, honestly, felt too sick most of the time to do anything except lay there with the TV on low. I was able to take a couple of walks down the hallway several different days.
Visiting hours are from 11 - 8pm and you get a private room and bathroom.
Now you are probably wondering "did it work"? It's only been 4 days, but I am definitely much better than I was going in. You need to remember that it isn't going to be a miracle cure. I guess we are always going to get Migraines. Today I have about a level 3 headache, so that isn't bad. I did have quite a bit of nausea and dizziness after I got home. I'm not sure if this was from the meds they have me on now, or just an aftereffect of the whole thing. I'm feeling better now in that regard.
I hope this helps you (or anyone else) decide if you are going to do it or not. Please post any other questions, and I'll be happy to answer them.
7/19/10 6:01pm
Thank you so much for sharing your experience. I have an appt there on 8/13 and I've been wondering what was going to happen. I've been filling the many sheets of paperwork they've sent. My appt is with Dr. Marmora and also another doctor. One's a neurologist and one's a psychologist. I started having migraines two years ago. Last October I started to have them practically everyday. My doctor has now diagnosed me with Transformed Migraine or Chronic Daily Headache. After your inpatient stay do they prescribe any medications for you. I've been taking 50mg nortryptyline per day, .5mg klonopin 2x's a day, phenergan for nausea when needed, and 40mg Verapamil 2x's a day. Phenergan is great for the nausea, and klonopin for the anxiety, but the nortryptyline and verapamil have not worked in preventing the headaches. I've heard others who really like Topomax.
Thanks,
Elaine
7/26/10 7:46am
They prescribed Mexilitine. This is the oral form of Lidocaine, which I was on intravenously in the Hospital. They also send you home with scripts for pain relievers and also anti-nausea drugs. So far, I've only had one headache bad enough to take something. I think your preventatives will work better once you are out of the hospital. At least this is what happened in my case.
7/24/10 2:30pm
My planned date is August 19. Just wondering what you would suggest that I take with me - as far as clothes and other creature comforts?
Thanks,
Cyndi
7/26/10 7:41am
Hi Cyndi,
That's great, I'm glad you are going in on the 19th! I took way too many clothes with me. I think I wore one pair of sweats and the Hospital gown the rest of the time. I brought my own gowns, but I found with the IV's, etc., it was easier with the hospital gown. Some sweat pants (or pajama bottoms) are good to slip on under the gown if or when you take a walk down the hall. Also lots of underwear. Slippers are a must. Hopefully, you won't be there as long as I was. I brought my laptop, but they don't have Wi-Fi, so I relied on my Blackberry. To tell you the truth, I wouldn't have felt like using the laptop anyway. I brought a book, but never opened it. I think I did glance through a magazine once. You may feel better than I did, so I would bring something to read just in case. I also brought some granola bars, which came in handy when I needed a snack or didn't like the food. Just bring basic toiletries including a hairdryer. I only used my make-up the day I checked out. Except for chapstick which I used regularly.
This is all stuff that you probably have already thought of. If I remember something else that I used, I will write again.
I just want to say that I have been feeling better than I have in 20 years! The first couple of days home are a little rough. If you work, try to take those days off, you will need it. So, all in all, it was definitely worth it. Please let us know how you make out at Jefferson.
Katie
7/26/10 11:21pm
Thanks Katie! I would have never thought of a hair dryer!
Sad about the wi-fi - it's my link with the world and I don't have a Blackberry or Iphone - now may be the time to upgrade!!
I am so glad to know you are doing so much better now!! Wow - feeling better than you have in 20 years - what I wouldn't give to say that!!
Cyn
7/31/10 12:10am
Katie,
I still have a million questions. Just wondering if you were on FB and we could set up a time to "chat?"
I doubt my questions are ones anyone else would be interested in - they are really more about putting me at ease than anything else! 
Just a little bit nervous about the whole hospital thing. My last hospital experience was NOT good (but it was not for migraines).
Cyn
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By Cyn— Last Modified: 12/25/10, First Published: 05/27/10
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Thanks for your response Patty! I have had several multi-day outpatient infusion treatments. Unfortunately, they didn't provide any sustainable relief in that by the next morning I generally had a migraine again.
Heard so many positive things from patients at Jefferson. Just can't get any first hand information on their inpatient program. Frustrating - I know there have to be people here who have gone through it.
Cyn