I have migraines nearly every day (about 3-4 days/month with NO headache; otherwise my pain level is about a 2-5). I see a headache specialist in Boston (who I waited for 6 months to get into!). We’ve done pretty much everything, including Botox. All triptans have either failed or have stopped working. Once a month I end up in the Emergency Room for a treatment of Dilauded, Torredol, and Zofran which will (usually) break a migraine that gets to a level 8-9.
My question is… at this point my headache specialist thinks it might help to go to an inpatient clinic (she mentioned Jefferson). What if I get an appointment and it’s on a day that my pain level is only a 2? Is it even worth it? So many people I’ve read about here suffer so much more than I do.
When I first started having very frequent headaches (I also have 3 or 4 no pain days a month), I chose to do inpatient at two different clinics – MHNI in Ann Arbor and Jefferson Headache Center in Philly. I arrived in Ann Arbor with low pain levels but they keep you for a while so by day 4 I had high pain levels. Both of those clinics have the top names in headache treatment. MHNI was a better experience for me than Jefferson because I liked the daily panels where a group of experts discuss your case and group therapy approach (lots of interaction with other patients). Also, the hospital is one story and on a campus so you can go outside. Jefferson was purely DHE infusion in a hospital environment. Was not allowed to leave the floor I was on. Jefferson does offer lidocaine infusion which you can only get there. MHNI seemed to give most patients a “nerve block”. The nerve block actually made me worse but I saw some people walk out headache free after they had theirs. Mainly I learned how to give myself DHE injections (which work much better than triptans for me) and got to interact with some others who were having the same problems as me. If you don’t want lidocaine, I’d recommend seeing if you can go inpatient in Boston for DHE infusion to see if they can break the headache cycle in a local hospital. They need to monitor your heart while they do it but it doesn’t require a specialty clinic. Otherwise, I’d recommend MHNI over Jefferson if you are traveling. I went to MHNI first because Jefferson had a 6 month waiting list.
Note on insurance – usually you have to prove that your area does not have the kind of treatment you need. I had to fight hard to get covered at MHNI and it didn’t get approved until after I was there a few days.
My headache specialist said that there is no longer an inpatient clinic in Boston. We live about 4 hours away from Boston, so it is a long trip there and back when I see the doctor. Our local (small) hospital does not have an infusion center at all. Since we are on the East Coast, I would likely go to Jefferson before MHNI. It seems like a huge step, but maybe it’s the right one. Working, mortgage, kids in college are the stumbling blocks (financially as well as taking time off), but hopefully those can be worked around. I’m thinking there will be quite a wait to get in, so there should be plenty of time to let my employer know the plan. Is this something that FLMA covers if I have to take a few weeks off? Should I even bother with the paperwork? Already I miss 1-2 days a month at work. What I mostly do is suffer through the week, crashing after work and on weekends.
I’m headed to Jefferson for the inpatient hospitalization at the end of July. Hoping to break the never-ending migraines that I have and maybe have some more options for treatment. My husband will be coming with me. Does anyone know if he will be able to stay in my room with me during visiting hours? Will I be so out of it that I won’t care if someone is there or not (I hope not!)? Getting nervous & looking forward to this all at the same time!
Canadian here eh? So can’t comment on the inpatients centres I’ve had a few of the treatments. Not sure how a hospital can be small enough not to have infusions available? They can’t find a chair for you to sit in for the day or is my thinking wrong (completely likely due to a really bad migraine right now and on TONS of meds and a bunch of cannabis lol)
My local urgent care treats me through IV and even my docs office has a chair for IV because he sometimes does vitamin IVs.
I had a bad migraine a while ago and got sent to be inpatient after 6 days of severe migraine and dehydrated (didn’t pee until THIRD-Fourth bag of fluid was done. I got timed doses of maxaran first, then DHE (very slow infusion because it made me very sick to my stomach and dizzy), also had to double the dose of maxaran to combat. Then a dose of toradol. This was 24 hours after my last dose of imitrex and they kept me pretty high on diauldid during that lol. It took 2 and a half days but it broke the migraine down to my usual pain level of 5 and I got to go home after 5 days (I fought to be released early, I was getting horrible anxiety attacks – they wanted me another 2 days to ensure I didn’t get a rebound headache.
Don’t feel bad if “your migraines aren’t as bad as others” …. only you feels in your body and can tell you when something is too much and you need help. Personally I would panic if triptans stopped working because they allow me to stop at least a few migraine attacks a month – to not have that would make everything worse. You don’t know the pain and suffering until you are at that levels. – today it seems like the end of the world but in 6 six months it might be your new normal (keeps happening to me crying face). Go with your gut and don’t feel bad about using for helping and taking whatever help you are given – inpatients, meds, treatments etc. All the hugs.
I completed my stay at Jefferson and was inpatient for 4-1/2 days. My migraine fluxuated up& down during that time between a 4-7, but when I was discharged it was a 0! DHE/Lidocaine/Magnesium were hard on my system and they found that I needed a much lower dose than some people who go. DHE made me very sick and they had to experiment with different anti-nausea meds to find the right one(s) that worked. The doctors and nurses at Jefferson were AWESOME – very kind and friendly. The classes that you take are good – I knew and used a lot of things already (nutrition, relaxation) – mostly it was nice to meet others in my situation … or worse 🙁 Since leaving my migraines have GREATLY reduced. I have so many pain free days now! Before Jefferson I averaged 20-25 migraines a month and was in the ER once a month with uncontrollable pain and only a FEW days of pain-free days. Just last month I only had 9 migraines and MANY pain-free days! I’m feeling like I’m able to commit to things again (before I would never volunteer for anything because I didn’t know how I would feel from day to day). I’m so thankful I went! Hoping the results last for a long time… just wait & see I guess!
Newbie here with possibly a stupid question: Don’t these hospitals and clinics have infusion rooms? I mean, once your diagnosis and treatment plan are clear, couldn’t you have a standing order to go to an infusion room PRN in order to ‘break’ a migraine cycle?
George Washington Hospital in Washington, DC has infusion room they call the “rescue room.” Does not require overnight visit. BeckyAlison, glad you had a good experience at Jefferson. Headaches still reduced?
My migraines are greatly reduced! I have approximately 4 or 5 migraines/month (I used to get 25!) and those are manageable with my triptan/Advil 800mg and sleep. I’m so glad that I did the inpatient at Jefferson – even though the hospitalization itself was miserable, the outcome was more than I could have imagined. I have not been to the Emergency Room since the beginning of July (before my inpatient stay). Before that, I was in the ER once a month. I know that it doesn’t work for everyone, but I would have to say that if you’re at that point, you should try inpatient if possible.