vfalsgraf:
Thank you so much for all the information you took the time to give us on Michigan. It really helped me to decide to make the call tomorrow. It may help, and I don't think it will hurt (although I don't think we will allow anyone near Lauren's back with a needle again anytime soon).

Hi. Computer just fixed, so I can add to the forum discussion again. I live in Eugene (hi to those in Portland). I have been home since 2/14 and have had a LOT of improvement. Life is not perfect. We are still adjusting meds. I've had 2 migraines where I've had to go to bed. But compared to the 3-7 days a week in bed with migraine, this ain't so bad.

I found EVERYONE in Michigan to be excellent and would trust taking my own children there...or anyone else.

They listened to me and my concerns. When I had an opinion about why something didn't work or I had an unexpected reaction to something, they took me seriously and worked in changes to accommodate what I know and experience in my own body.

I was terrified to go there. I was sure they would hook me up to an IV and try all sorts of dangerous, major-organ-eating drugs that may help my head for a few years but would cripple me in the future. That couldn't be further from the truth.

Now, they keep reminding us that we've had this head pain for a LONG TIME and that we are truly the all-stars of head pain. So the trip to Michigan is just the beginning.

To that end, I still see my neurologist here in Eugene. For pain management/injections, I am driving to OHSU and seeing Dr. Kimberly Kaplan in the Pain Center. (Yes, OHSU has one...they do not specialize in head pain, and the direction of the Pain Center is quick to acknowledge that Michigan is the best in the country on head pain.) HOWEVER, OHSU Pain Center/Dr. Kaplan do know a lot about pain and are VERY kind and VERY competent.

Last week, I had a 7:15 a.m. appointment with a 8-9 a.m. neck procedure to be done. Well, we got horribly lost...just thought we were on the right street and then it deadended and we ended up driving south toward Salem. I called the Pain Center twice, sure that they would be understandably upset with me and expect me to reschedule.

When I finally got there at 8 a.m., they ALL (receptionist, nurse, dr.) said "no big deal. we've all gotten lost coming here." etc. They took the time to do the procedure. I did not feel rushed.

This morning, Dr. Kaplan herself called me at home to check on me. We're not sure this is the right procedure...had some flareup with it. We discussed other options. She talks to me like she has all the time in the world.

So those are my great, not totally perfect, but a far sight better than 2 months ago (i.e., pre-Michigan).

Hope this gives people more insight.

Kerrie, I'm SO HAPPY that you'll be going. If Hart can go, they have a really nice inn on the "hospital campus" that is about $60 a night. Some folks complained about the beds, but it seemed great to my husband. And the people who run it do their best to make folks feel at home. There's even one person there who bakes homemade cookies for the guests every day!

Although there are technically visiting hours, my husband was welcome to be with me any time of the day or night. One particularlly bad night, I called him to come over at 3 a.m. No problem.

My one piece of advice...the morning rounds (which mean that each patient meets with neurologist, physician asst, RN, psychologist, etc. in a big room to discuss how things are going, what meds/procedures need to change, happen.) Anyhow, go armed with your questions written down and be assertive. It took me a day or two because I was a bit intimidated and I felt a little rushed. But I just held my head high and said I had some questions, and said everything I needed to say before I'd let them excuse me. This is a REALLY minor thing. Like I said, I think these folks are miracle workers.

Anyhow, Best of luck to both Lauren & Kerrie!

Vicki

I would like to weigh in on the MHNI experience. It's always great to hear from someone who had a good outcome but that unfortunately is not always the case. In our experience there with our daughter who has NDPH and usually a weekly migraine it was not so easy to get relief. It does seem that they have better outcomes with patients who only suffer from migraines. Those who have NDPH are still quite a challenge. We found while there that the patients who got relief were those who had nerve blocks. I know of only one patient who suffered from migraines who left feeling better without one. That being said they will try a variety of IV protocals along with a variety of abortives and preventatives. Yes the hospital staff is great. The classes offered are good and meeting others who also suffer really helps. You learn that there are so many others in the same boat so to speak. And if you go your family can stay on the hospital grounds at the White Oak Inn for $65 a day which includes breakfast and a wonderful staff to help. For patients who have NDPH Dr. Rozen is tops in the field. That being said if that's who you see you will not see him every day and that can be a problem. Most days you will see Dr. Saper and he has a different approach than Dr. Rozen. In terms of health insurance make sure you are covered. A 2 week stay there can run around $30,000 plus about $5,000 in doctor and lab fees. Of course this is all worth it if it works but there are no guarantees. If like our daughter you have tried everything else then it's the next step. I wish anyone considering it the best.

I requested a brochure from them last Friday and it arrived today. Pretty quick turnaround. http://www.mhni.com/ContactForm.aspx

I have heard mixed results about inpatient headache clinics (all of them, not just MHNI). I guess it's like every treatment -- some people respond and others don't. I know some people get relief initially, but then the headaches pick up again.

Lauren's mom: The headache specialist I recommend is Christina Peterson (http://www.migrainesurvival.com/clinic.html). I haven't seen her for treatment, but she's a wonderful person and so compassionate. She's a big advocate for patient education and really knows her stuff. Her book is pretty old, but you can get a feel for her in it: http://www.amazon.com/Womens-Migraine-S ... 932&sr=8-1. She's right on top of the research and will try unconventional approaches if necessary.

Kerrie

Hi vfalsgraf,

Thanks for all of your information on Michigan, my neurologist here in Chicago has been pushing it for sometime. He has been rated the best here but has reached an impasse on my situation.

I suffer from constant headpain with daily migraines, several a day, to boot. Based upon research I suspect I might have ndph but I will leave this to the docs. I have been to Mayo and more specialists than I care to remember and have tried more drugs than my liver wants to know.

In any event, I too have concerns about the "roomie" issue at the hospital so I was interested in this. But my biggest concern is the extent that headaches are managed, or more accurately, pain is managed, while these different therapies and drug withdrawls are being done. Any insights?

You also mentioned Cleveland? What is the name of that clinic?

I am also looking into Jefferson in Phili as they have done much research into ndph, anyone with insights?

Diamond has many people who swear by it although no one at Rsuh Presb., where I go or at Mayo, where I went, likes them much. I guess they can be pretty aggressive with meds and Mayo ends up seeing many of their patients, per Mayo. But then again, I am not very pro-Mayo, either.

Would be happy to share my gobs and loads of experiences if anyone is interested. Pretty much tried it all, went to tons of specialists and tried alot of drugs, but it seems I am not alone based upon what I have seen here.

Thanks again and if you can provide insight, that would be even better.

Hi. Sorry to be so late responding. Just logged on after several days.

Don't know the name of the clinic in Cleveland.

You asked about pain management in Michigan. I was actually surprised about how aggressive they are about pain management. I'm used to not taking any medication until it's REALLY BAD and I just can't stand it anymore.

Michigan, on the other hand, was like "we give abortives at levels 3-4 (of 5 pain scale)." It appears I've always waited to long to treat myself because I was worried about "using up" my weekly allotment.

I don't know anything about ndph. I know that michigan is very clear that they will not be able to CURE the headaches. We will have these the rest of our lives. The point is to get the best possible management program. And that the trip there is only the beginning. I just got my meds changed again 2 days ago.

And I still have migraines. Woke up with a 5 this morning, sick most of the day. But no throwing up. And no trips to the ER in the month I've been home, which is a real record. And I've only had to go to bed with a migraine about 5 times in the last month...again, a record for me.

So on the one hand I'm disappointed because I like to be optimistic, naively so. I thought because I had some headache free days, my whole life would change. The bluebirds would sing, the sun would always shine (I live in Oregon). But it's the same life I left, just with fewer headaches.

Was the trip worth it? YES YES YES! They consider a 50% improvement a success and I have to say that I agree with them. I wish it was 100%, but having fewer (by a lot!) migaines that send me to bed...that's big enough for me. I had hated and resented going to bed so much. I hated living in a dark house. I hated having my head be so sensitive that others in my home could barely move around or talk to one another because my too-acute ears would hear it and consider it to be screaming and pounding on my head.

Not everyone gets to leave the hospital in as good a shape as I. They can't help everyone. But they are still the best and it's still better to try than not.

Did I answer the questwions? I hope so. Like I said, I had a 5 most of today and I'm still not on top of my game.

Really warm wishes and hopes, Vicki

Thanks very much, it helps as every piece of information is a piece of the puzze. unfortunately, it seems clear that perhaps only my migraines may succumb to some form of imporvement (based upon what I am reading anyway) and that the daily, unremiting pain may just have to be as it is. But, I suppose that any improvement is still improvement.

I have my first appointment locally here with a doctor previously associated with the Robbins Headache clinic...a name I have not previously seen. I met with her prior to my first visit to Mayo (should have stuck with her and avoided the time and expense of Mayo) but I will begin the process of discussing options. Then I will meet with staff from Diamond and move outward from there..probably Michigan after that, then Jefferson.

Again, many thanks for adding to my knowledge.

Hi.

Didn't mean to imply in my last post that I didn't have daily headaches. Rather that they were still considered to be migraines rather than the ndph. Now I'm having days (like today) where I woke up with NO PAIN! So I guess that's the difference.

Best, Vicki

Wow...I would (almost) kill for a day that I woke without a headache....I cannot even remember what that feels like. Fantastic for you!!! And I know that it must have come after hard work too.
Thanks for clarifying, the terms become interchangeable but mean two different things to me anyway.

Hi, Folks,

I am new to this blog and wish I could hug Kerry personally! I cried reading the posts from so many who live like I do and feel obligated to apologize to the world for a condition they cannot control.

As for MHNI, I have been there and have definitely seen at least a 50% improvement. Kerry, I went through most of the treatment attempts that you did before going there. For a while, I was eating only plain chicken and vegetables. I am 5'7" and got down to 104 pounds. If I felt good, I might have been excited about being model-thin, but I was still miserable. One surprising thing I learned at MHNI was that my neurologist was prescribing many meds that contained Tylenol and telling me that, as long as I mixed up taking them on different days, I wouldn't become dependent on any of them. I learned that daily Tylenol can cause rebound headaches (along with liver damage!) so they gave me a specific protocol to follow. They do not give up on you!

One drawback is that, even with good insurance, you will most likely pay a lot out of pocket. It is worth the relief, but I also want to give folks a heads up on that. I am a teacher, and we have some of the best insurance. I paid everything up front on a credit card and then got reimbursed maybe 60%.

Also, for those who fear the idea of inpatient, this is optional and only in extreme situations. I did not have to go inpatient, because they found a medication schedule that worked pretty well. However, they let me know that they would put me in if I ever felt that my headaches were again ruling my life. They also used a variety of methods with me, and shots to the head/neck are not their first avenue of relief either. I did opt for a nerve block and found some relief. One thing to note, however, is that my physical therapist warned that frequent shots can cause more neck scar tissue. Kerry, we seem to have that in common, and she worried about me getting more from frequent injections. I even looked into Botox, but the doctor I spoke with referred to it as "hospice for the neck." As he explained it, paralyzing some muscles will impact others so the headache "game" (no laughing matter) will continue.

All said, I would recommend MHNI for those who feel that migraines are controlling their lives. I was definitely at that point, and my life has improved. Much like others have stated, I know that they cannot cure me. However, they care and will get me in quickly when needed. In addition, they have a phone nurse who offers as much support as she legally can.

Good luck, friends! I pray that you will find the relief that you search. In the meantime, Kerry is a saint for giving us this place to share!

Blessings!