Migraine

Hi All,
I am new to the community so I will tell you a little bit about myself.

I am currently 30yrs old and have been suffering from migraines for 18yrs. In the past year, my migraines have become so disabling. I am also suffering from Chronic daily headache. I have been on a bunch of medications, but to no avail so far.

I have been seeing a new headache specialist that just came to my local hospital from Michigan, and he has referred me to the Jefferson Headache Clinic. I have an appt. with a fellow on July 22nd.

I would love to hear about any experiences those of you might have had with the clinic, inpatient unit, and infusion unit. I have been hospitalized at my local hospital 3 times in 2008 and 1 time in 2009, so I don't know what they are going to recommend for me. Also if anyone knows of any hotel accomodations close to the clinic, please advise.

Thanks for your insights!

Hi again! I replied to you in your introduction too. I just wanted to say Good Luck at Jefferson!

Hopefully, someone will be along soon to share their experiences at Jefferson with you.

Hi!

I'm a patient at Jefferson--have been for over two years. For a little bit of discussion about hotel/transportation, please take a quick look at THIS THREAD.

At the initial visit, patients complete some paperwork, see the staff psychiatrist, see the nurse, and see the doctor. The first visit takes quite a while!

I've improved quite a bit with help from my doctor at the Jeff. I now have a very effective rescue med that has saved me many, many times when the abortives have failed! I've also become involved with a clinical trial there for the occipital nerve stimulator implant. This device was implanted in my body earlier this year and has brought a great deal of pain relief for me!

I've repeatedly refused inpatient stays at the hospital there--I have two small children who still need a lot of help from me and a DH who works very long hours. On an outpatient basis, I've received IV infusions in the clinic there and nerve block injections. I couldn't have lived without these! My experiences with both have been just wonderful!

I just love the Jefferson! I take a plane and a train to get there each time, but it is definitely worth the cost!

If you have any specific questions, please just ask! I'll keep an eye on this thread!

jenny

jennyc,
can I ask what types of rescue meds they offer. This is where I run into problems at home here, when the Migranal nasal spray does'nt work for me, I usually end up in the ED. I would much rather be able to treat myself at home. Did it take you a long time to get on a good regimine? I also have an 19mo old daughter who needs me, and I am scared about being an inpatient if they suggest it. I only live about 3hrs away from Phila. but, still, its being away from my little girl that would kill me! So anything you have to offer would be great as I said before!
Thanks,
Megan

Megan,

They may or may not suggest the inpatient unit. They won't unless they think it's really necessary.

As for rescue meds, it's going to depend A LOT on you and how you react to medications. In my experience, as long as you're totally open with them, they'll keep working with you on preventive, abortive, AND rescue medications. They don't want you to have to go to the ER either.

They may evaluate and have you try some other abortives if the Migranal fails you very often. They'll probably also tell you not to use it more than a couple of days a week.

Are you all prepared for your appointment?

quote:

Originally posted by mcc79:
jennyc,
can I ask what types of rescue meds they offer. This is where I run into problems at home here, when the Migranal nasal spray does'nt work for me, I usually end up in the ED. I would much rather be able to treat myself at home. Did it take you a long time to get on a good regimine? I also have an 19mo old daughter who needs me, and I am scared about being an inpatient if they suggest it. I only live about 3hrs away from Phila. but, still, its being away from my little girl that would kill me! So anything you have to offer would be great as I said before!
Thanks,
Megan

Hi Teri,
Thanks for the information. I asked about the rescue medications because I have not had luck at all with the specialist I am currently seeing as to help keep me out of the ED. I do follow the directions for the migrinal (not to use it more the 2-3 times per week), but if that fails...I end up in the ED...the last place I want to be! So I am really hoping that they will try everything for me, as I will be as open as I can, I am desperatly in need of help! As for being prepared for the appt., I am hand carrying all of my records, office notes, ED visits, MRI,MRV/MRA,C-Spine copies, also all of the preventative meds, abortive, and lack of rescue medications list. If I am missing anything, please advise on specifics! Also wanted to ask you, I am seeing a fellow (because they said it would'nt be until Sept. to I could see Dr. Young, but will I be able to consult with the attending physician (like Dr. Young)? Any other thoughts or suggestions please advise me, I want to be fully prepared, and I really appreciate your help!
Thanks, Megan

Megan,

I fully understand the question about rescue meds. When I started with Dr. Young, he prescribed Imitrex that I could use two days a week and a pain medication that I could use two other days a week. When I had Migraines more than four days in a week, all I could do was take some Phenergan for nausea and try to sleep. The pain medication was my rescue medication. Over time, as he got to know me better, and we got my Migraines under better control, I still had a triptan and rescue meds to use if the triptan didn't work. Again, it will depend a great deal on your body and how you react to meds.

The goal will be to find a preventive regimen that works well, and when that happens, we often find that not only do we have fewer Migraines, but that our abortives work so much better that we seldom need the rescue meds.

I'm really confident that they'll come through for you with everything they can put in your tool box. Just give it time. You and your doc will need to figure out what works best for you.

I'm not quite sure how seeing a fellow works. I think that you will see either Dr. Young or Dr. Silberstein for a bit; that they'll check in on you and the fellow; but I'm not really sure.

To see what more you can do to prepare, take a look at • Migraineur's Guide To a Successful Doctor's Appointment. Let us know if we can help!

Teri, Jennyc, and Laura,
I just wanted to thank all of you for your help and support! I have a lot riding on this appt. and am looking for good outcomes. You have all rest assured me that things should go very well. I am so happy to have found migraine connection to be able to speak to knowledgable people like yourselves! I once thought that I was alone in the battle of migraines, but since have learned many new facts about the disease and how many people in america suffer (its amazing, and disheartening, that there isn't more research on it). I am hoping that this appt. will also get my family life back on track. I have an 19mo. baby girl named Chloe that needs her mommy. I am very blessed to be living with her father and my parents (so I have a good support network), I just hate having to always rely on them...it definatly plays a toll on everyone.
But again, I want to say thank you, for taking the time to share your information with me, I dearly and greatly appreciate it. And as time nears for the appt., I might have a few more questions!
God Bless, and Take Care,
Megan

Megan,

You certainly are NOT alone! You have us!

You are on the right path now that you're headed to the Jefferson! I have a friend who sees a fellow there (Dr. Aliani). She sees the fellow for a thorough visit and does not see the nurse. (I, on the other hand, see the nurse first for about 10 minutes--she updates my records on the computer, asks me lots of specific questions about how I've been doing, asks what refills I need, etc.) My friend then sees one of the attending docs. She's been happy with that arrangement!

In my experience, the docs at the Jeff are quite conservative with rescue meds. (I clearly remember the nurse telling me at my first visit that the doctors will try all sorts of meds there--but NOT narcotics.) The emphasis, as Teri said, is DEFINITELY on finding a good preventative regimen and on breaking difficult cycles with outpatient interventions, wherever possible.

I've been through many different med combinations and had countlesss nerve block injections during my time at the Jeff. As far as my rescue meds go, I started with Ultram (which only brings down my pain levels 1 or 2 points). After getting to know me for QUITE A WHILE, my doc prescribed an injectible nausea med and an injectible pain med. In the case of the pain meds, though, I receive a prescription for only 5 doses every 2 months. My doc has told me in no uncertain terms that he realizes that I have a definite need for rescue--but that it must be used very infrequently to prevent rebound. Please try to be patient and form a relationship with your doctor there. It may take some time...

I'm still not on a completely effective med combo. The implant of the stimulator has helped to reduce my pain levels, but I still have daily migraine symptoms (aura, pain, nausea, etc.). But I feel like i'm slowly chipping away at this pain! And I really feel like my doctor will keep working--he's told me that he'll never give up as long as I keep trying!!

I have two boys (ages 6 and 8) who still need Mom's help quite a bit! And my DH tends to work very long hours and spends lots of time away from home. But you have to remember that your daughter needs her mom to be well! If inpatient treatment is needed, it'll certainly be worth it in the end. (Remember, they'll only recommend it if they think you really do need it.)

I hope that info helps!!

jenny