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01/03/2011 10:10 PM

Michigan Headache and Neurological institute diagn

ciera13
 
Posts: 35
New Member

Hello!

Okay, so they gave me 5! History of thunderclap headache, cervicalgia, cervicogenic headache, chronic headache, and medication overuse headaches.

I really want to thank everyone on this group and will still check in with people. Doc said it was definitely not NDPH.

Thank you all! I wish everyone great luck in finding a way through the pain. Thank you very much because I wouldn't have found the MHNI without you all!

Erin

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01/04/2011 02:00 AM
Enbee
EnbeePosts: 1556
Senior Member

Hi Erin, that is an interesting range of diagnoses! I don't think I've seen that combination before. Have they said what they are going to do for you?

01/04/2011 11:12 AM
MaryR
MaryR  
Posts: 4181
Group Leader

Wow 5 diagnoses, I don't feel quite so complex with just my two now. No wonder your "normal" doctors were confused.

I hope that now that they have diagnoses for you that the treatments will actually start to really help and you can make some progress!


01/04/2011 07:53 PM
tortoisegirl
tortoisegirlPosts: 3364
Group Leader

Interesting...very curious what the treatment plan will be. Good luck!

01/05/2011 06:25 PM
ciera13
 
Posts: 35
New Member

They are going to put me into their inpatient program. A blend of group and individual therapy, biofeedback, meditation, and meds. I think physical therapy might be part of it too. They want me on a regular schedule: meals at the same time, awakening at the same time, going to bed at the same time.I might be going up to tomorrow.

01/06/2011 08:57 AM
MaryR
MaryR  
Posts: 4181
Group Leader

Best of luck, I hope that you get lots of relief!

01/06/2011 04:02 PM
Enbee
EnbeePosts: 1556
Senior Member

It sounds like a good plan! I am supposed to do the 'regular schedule' thing too. My neuro is quite insistent on it and I must say it helps a lot with my fatigue, which in turn doesn't exacerbate the headache.

I hope that the treatment plan is successful Smile


01/17/2011 08:11 PM
lizzierodgerss
Posts: 1
New Member

I was inpatient at MHNI for 9 days, and sadly they did not find a cure for me, BUT my two roommates i had, and the four roommates my boyfriend had all got answers and help from MHNI. best of luck.

01/18/2011 08:17 PM
tortoisegirl
tortoisegirlPosts: 3364
Group Leader

Welcome to the group and thank you for sharing, Lizzie. Hope to see you around here again soon. Best wishes.

01/23/2011 11:48 PM
Nataliathespy
NataliathespyPosts: 10
Member

Ciera13, I just wanted to give you some tips you might find helpful for your inpatient stay. I navigated the intake and stay process alone, and I think it might have helped if I knew some things upfront. That said, I wish you all the best with your stay and treatment.

1. It may take you several days to actually "get in" once they notify you that you are on their list to be admitted. I am from Central IL--I had my full day of appointments/evaluation on 9/18/08 and wasn't admitted until the evening of 9/26/08. Staying up there was a moderately significant expense that I wasn't expecting. If you can, consider getting on the list to stay at the White Oak Inn--it is on Chelsea Hospital property and is primarily filled with patients/patients families. At the time, the rooms were about $60/night--they offer light breakfast in the morning. My room was clean and decently appointed. Made a calm transition into my 16-day stay in the hospital.

2. I'd encourage you to take a notebook. Each morning, you'll meet with a panel of staff members including nurses who treat you, the doctor(s) on call, and Dr. Saper. This meeting will often be very early (before 8). Honestly, you may feel like utter poo at this meeting, so anything (questions, comments, etc.) you can have written down will help you. (Especially if you have memory problems with my pain as I did/do.) After these meetings, you will return to your room and be visited by the on-call doctor--one of the MHNI staff, possibly the doctor to which you're assigned during your initial evaluation. They will spend as much time with you as they feel is "fruitful"--knowledgeable questions about your treatment will help show you're engaged in their process. I know some days this will be hard, as you are hurting and under new medications; again, the notebook helps jog what's left of your mind. Smile

3. Though you'll undoubtedly reject going to all the classes they offer (some days you honestly won't feel like moving), try to make an effort to go to several of them. I say this for your enrichment and also for the doctors' perception of you. I know from experience that they made positive comments to those patients who were "engaged in the process" and not so positive comments to those who weren't. There are some classes that are, in fact, interesting. The medicine class was one of those. Though I had taken ~20 before my stay, it helped me be more educated about what I had already taken (and no doctor had EXPLAINED) as well as preparing me for the medications I was GOING to take during and after MHNI's program. Just a suggestion.

4. Take the opportunity as possible to get to know your fellow patients. This may sound like an odd suggestion. It is easy to allow yourself to feel isolated in your pain (as I'm sure you feel now); I just envisioned I'd be lying in bed all the time there. I found myself sitting with a group of fellow patients at lunch and dinner time; we connected through our pain and our paths to MHNI and found that we actually had kindred spirits out there in the country. To this day, I remain very close with 3 of my fellow patients and in contact with others. One patient, diagnosed with NDPH, has now gone on to graduate with a Harvard Law degree. My experience led me to engage with very capable, courageous, caring people that I wouldn't have known if I had stayed in bed. Yes, you'll still hurt, but you'll find that the occasional shared tear and laugh help a little bit.

5. I'd encourage you to wean yourself off of pain meds prior to entering your stay. If you do not, you will spend your first days doing that in a hurry--that can make for a rough start. Many of my fellow patients came in on heavy pain meds--IM shots, pills, even regular IV treatments of things like Oxycontin, Narco, Ketamine, etc. MHNI is an anti-narcotic program--ultimately, I think you'll appreciate this, but it can be difficult for some who have been strongly tied to a pain management specialist.

6. Try as hard as possible to NOT GET DISCOURAGED. Like I said, I was there 16 days. I had 2 lumbar punctures, 1 facet block, and 1 cervical epidural during my stint, in addition to multiple medications (preventatives, abortives, etc.). 2.5 years later, my story has unfortunately not ended, BUT I know full-well that I had to go through that process. There is an element of building your medical resume, so to speak--sad and disgusting, but true. I truly, truly hope this stay marks the beginning of the end of your pain journey. Arm yourself with information and prayer--at the end of the day, you and God are the only ones who know exactly what is going on in your body and who are 100% interested in your healing. Some of the procedures may exacerbate your pain--share this with the nurses and try to press on through the next hour, night, morning. I had one night in the hospital (after my facet block) when I literally called my parents in IL in a heap of tears due to the growing pain. You'd have to know me to know this is not like me. Give yourself this opportunity to be treated, to learn, and hopefully to heal.

7. One last thing--love your nurses. Smile I honestly had some good friendships with the nurses during my stay. I'd have to go back in my notes now to recall their names, but I remember their faces and their kindness. You see them quite often, so the nicer you can be to them, the more precious they are apt to be to you. Smile

I wish you all the best. I hope they are able to break your pain cycle. If you would like to hear from others who attended MHNI while I was there (Sept-Oct, 2008), don't hesitate to let me know--I'm sure they'd be happy to share their stories with you. Take care!

FYI--my diagnosis upon leaving was a very tentative (per my doctor) IIH/pseudotumor. This was primarily due to my semi-positive response to lumbar punctures--I'd have four days of "lesser" pain (probably took me down 2-4 points on the 10-point scale). Unfortunately, this trend seemed to stop after my fourth LP. I have a long story after MHNI, but don't worry about that--that might not be your path at all!!

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