MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

View previous topic View next topic Go down

MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  TheBookworm411 on Tue Mar 16, 2010 3:44 pm

I did a search through the forum and didn't see anything about it here. My doctor is sending me there. I have my appointment April 13th. Technically you are not admitted until after your appointment and evaluation. He said he's never sent anyone who hasn't been admitted though.

I want to know if anyone else has ever been there and what their experience was. I will be flying all the way from Seattle, WA so it is a big decision.
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  sailingmuffin on Tue Mar 16, 2010 7:25 pm

Hi,

I was a patient at MHNI in\ May 2002. I saw Dr. Saper and Dr. Prestaegaard. Both were ok. I will go ahead and warn you that the clinic doe not like pain medications of any kind-especially anything narcotic. If you are on them, you might want to go ahead and stop or taper down before your appointment. Also, like any headache clinic, they will try several IV medications for the headache, start some preventative medications and have classes and some "group therapy" that you are strongly encouraged to attend. Upon discharge, you are usally told to follow up with your current neurologist, or one in your area.

My experience was mixed- there were some good things and bad things that came out of the experience there.

I will start with the bad things.
I am from Alabama and my understanding was that I would be seen at the MHNI outpatient clinic and tjem immediately admitted to the inpatient ward at Chelsea Hospitaleither that day or the next day. This did not happen- we were stuck in limbo for five days because there was not a bed avaliable. (Eventually, my mother, a formidable MD in her own right, tracked down Dr. Saper and basically said, "we are from out of towm and we have been waiting for a bed for a week". I was admitted the nest day.

- One huge difference between MHNI and other clinics is that they focus more attention on psychological problems that may contribute to migraine- such as depression, etc. I agree that these things can be co-morbid with migraine, but not the root cause.

One osychologist particularly irritatied me. I explained to him that I had had a rough year- I had just finished final exams, was in tremendous pain, and had to participate in several solcial events in my home town. (note- these are events that are am honor to participate in, and everyone of my parents friend's who had sons, asked if I could be presented instead.) I tried to explain that I really had no choice, these were the people who would write college reccomendations, who have been good friends to myt family my entire loife and who still care about me, even though I am sick.From this interation, the physccologist concluded that my mother was the root of my migraines. (I know she causes occaisional headaches for me, but she is not the root cause) and has done everything a mother should do in this situation. She has been there every step of the way.

- I also deveolped some aphasia/slurred speech while i was an inpatient. One of the neurologist videotaped it and said it was aphasia. The other drs told me it was psychological and I should "get over it."

- At one point, I was on 50mg IV benedryl every eight hours, round the clock. At this time, I wanted my mother there for rounds, because I knew that I would not be lucid at the time. (I was 21 years old at the time.) One dose was given at 7am and rounds were at 8am. Family members are only allowed to be at rounds twice a week. So one day, I simply asked Mom to be there at that time. The drs went nuts-mainly because both of us asked some questions. The doctors were outraged and again blamed my mother. At one point, My mother, an MD, wanted to check something in the chart. They told her "no, not without consent." I was next to her- so she asked me, I gave the ok, and then we asked if verbal was suffient or if they would like a written release; the nurse finally let me see my own chart.

-It was pretty clear that some of the doctors did not like us. One patient suggested that we have the attendint speak to my father. He did and my father said "Neither my wife, nor my daughter is crazy, just treat my daughter and things will improve." Once that was settled, everything got better. It is strange how the doctor would listen to a male over a female.

The good
- They were able to help in some ways. Not all of it was bad. Most the doctors did try to help some.

-It also helped me cyrstallize the way that I would live my life with migraine. There were several people in thier early twenties there. Most had stopped going to school or out with friends because of migraine and I was able to tell them about disability qualification at school. I am not judging anyone, but thier lives simply stopped. I vowed that I would live in spite of the disease. (I think I did pretty well until the fainting began two years ago. Still, I do have friends, a great roommate, a supportive family, and all of you. so i consider myself incredibly lucky.

The best thing tat happened while at MHNI occured in the form of bilateral frequency to C-2, C-3. I kept asking them to look at my neck and they finally did some trial nerve blocks, which worked beatifully. This led to bilateral radiofrequency, which led to my fist period of remission-this lasted eight moths. I would have 2-3 headaches a week- that responded to medication.(The same thing occured during my second remission- from June 2004-March 2005.) I usually had one headache a month, which required some steroids to break it. THough I had a repeat procedure one year later, it only lasted six weeks. However, the positive response to the radiofrequency led to the implantation of the occipital nerve stimulator two years later. This has been an absolute Godsend and has given me a better qualitiy of life for a longer period of time.

As you can see, both good and bad came out of the visit and hospitalization. This is only my experience. There several patients there who did incredibly well. THere were also patients that did not get anything out the program. As Richard used to say, "Your results may vary." If you have not been to a headache clinic before, it would not hurt to give it a shot. The same thing goes if you have been to a headache clinic before.

I hope this information helps.

Pain free days,
sailingm
avatar
sailingmuffin

Posts : 550
Join date : 2009-12-05

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  TheBookworm411 on Tue Mar 16, 2010 8:55 pm

I have experience with that whole "rounds thing" since my little brother had Leukemia and I was his caretaker. I was his legal decision maker since he was out of it most of the time. I know you have to ask your questions when they are there or you will never get your chance. I also know you have to stand up for yourself. I had to deal with big jerk doctors too. The scheduling nurse who made my initial appointment told me that the clinician who will be calling me won't have me come out if there is no bed available and I will be really clear on that since I am coming from Washington. I've already discussed costs of treatments and insurance coverage with them as well. I've already gone over everything with my insurance company too. I have to go by myself. I don't have anyone. I am worried about the altitude of the airplane. Haven't been on one since before migraine. Would not do it for any other reason.

The reason I am considering this place is because my Neuro, Dr. Singer and Dr. Saper are old friends. They started out at the same time and my dr only does migraines and headaches also. My dr has sent 5 or 6 people there who he said have all been admitted. He did say it won't be a magic pill that will cure me instantly. He talked about this place when I first started seeing him last fall like he wanted me to go right away. Then he said he wanted to try a couple of things first. The only thing he has tried is Zonisamide. He keeps increasing it every time I see him and I am worse than I have ever been. I have told him that I can't go into work anymore, I have to file bankruptcy, I can't drive, I can't take care of my son, but he seems to have lost any motivation to send me or try anything else. It was my Primary Care Physician who finally looked it up on her laptop, wrote down the number, and told me to go right home and call them. I have absolutely no life. I can't take it anymore. I am ready for a last ditch effort. I am already on COBRA so I have to try this before it ends or it won't be covered.

I have no problem not taking any pain meds. I just put myself through a 2 1/2 week pain med vacation that ended a week ago when migraine got unbearable and I really wanted to spend some time with my son. But I am very cautious with the pain meds. Don't take them often and have never had to increase my dosage. I only took pain medicine 2 times a week until I started seeing my new neuro.

Like most of you I have tried every normal and weird thing that anyone has ever suggested or I have ever heard of. I've had this migraine since October 16, 2008 and if they can even give me small breaks from the pain that would be really something. It would be worth it.

I have read a lot of bad reviews though so I am anxious. But I do just have a migraine and no other problems and that seems to be easier for them than anything else. My appt is April 13 so far.
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

MHNI

Post  pilot57 on Wed Mar 17, 2010 7:09 am

Hi....I was an inpatient at the Chelsea Hospital for 2 weeks in April. Interestingly, I am from Eastern WA, so I understand how long the trip is. I have had migraines for 10 years and chronic daily migraines for 4-5 years.

First of all, the hospital has a head pain unit with only 20 patients. One of the best things about the program is getting to know the other patients. I still keep in touch with some of them. The hospital and staff are nice and the hospital is set in a pretty area in the small town of Chelsea.

As sailing muffin said, they do approach both the physical and emotional aspects of migraines. I found some of the classes interesting even though I feel like I am well-studied on migraines. We had a permanent IV port as we received different IV drugs 3 times/day. To this they add different oral meds, trying to find the combination that will work.

I did not receive relief from the clinic, but it is worth a try. In my research and talking with my neuro, I believe that chronic daily migraine patients are some of the hardest to treat. I felt like the clinic tried many options, but none worked.

I wish you the very best. By the way, I was lucky and was assigned a bed at the hospital on the same day as my MHNI appt. Not everyone was this lucky, though, so you may have a bit of a wait between your appt. and getting a bed at the hospital.

If I can answer any questions, let me know.

pilot57

Posts : 54
Join date : 2010-03-17

Back to top Go down

mhni and chelsea

Post  dailyha-rose on Wed Mar 17, 2010 8:46 am

hi, there. i was a patient 2(x) in my nearly 20 yr. life of chronic daily headache and M. both times i did not receive any relief. i agree with the other posts. they gave you good info. about life there the good and the bad.
the good part about the hospital is the ability to use iv meds. to try things out. it speeds up your ability to try out lots of different things. the nurses are good, they really try to help you and are a lot of fun. dr. saper - i had no problem with.
the rounds are tiring, esp. if you are the last room to be visited. the drs. partaking in rounds were young. had no life experience, and seemed to be "butt-kissers". i guess that is the way it has to be to be selected to continue with your studies. i say this because one of the neuros. one a.m. discounted something i said and they were giggling. this was fodder for the patients to discuss w/me on how drs. need to listen and consider all that we say. i considered my case to be a teaching experience for them(young drs.) and for the most part ignored them except for that one rude display.
another good thing is the other patients. you can learn a lot from each other. the classes are a plus. depending on how long you stay there you might get to go to some classes repeatedly. other patient's families will most likely adopt you as they seem to do when you are alone. you will not feel alone.
chelsea is a lovely town. easy to walk around... i lost 5 lb. waiting to be admitted. jeff daniels, the actor has the purple rose of cairo theater. i highly recommend going to see a play there if you like that kind of thing. merchants in town are friendly. i visited them often and got to know the ones with pets on their premises. if you have to wait for a room, the white oak inn, part of the hospital campus is reasonable, nice and run by great people. we still exchange holiday cards!
on the bad side, be aware about the wait. others have mentioned this too. i had to wait 6 days. my husband had to go to work after 2--thats why i had to walk around chelsea. if he had not really yelled and complained on the phone to the staff, i know i would have waited longer. thanks to him i was admitted during the holiday. but between that and my 17 day stay, i was gone 23 days. maybe enough people complained to change this by now.
i too tried a lot of stuff. nothing worked unfortunately. not even those nerve blocks. warning, i told the drs. repeatedly that i had no neck issues or problems.. got home and had terrible stomach pains lost 28 lbs.(in total). then realized my preventative and abortive meds were ALL muscle relaxants...!! for my neck problems???. stopped the meds. and stomach fine again. i should have noticed what the meds were. the drs. still believed (even after the failed multiple blocks) that my neck was the problem. be more vigilant that me.
sorry to say i had a big problem with the main psych. there. i knew how there are many preconceptions and misconceptions with headaches and we really tried to be candid and yet, watch what we said. my husband asked about a certain med. months later when i finally got the right medical reports sent, we found that that same psych. wrote something about me and "drug seeking behavior". i was mad at my husband( i did not even ask about any meds.) everyone here knows how a report can affect you. we were so furious and upset. to be short, the irony of that report is frustrating and very offensive.
this is my experience. i would never try to tell anyone not to go there, just because i did not get better. people have received help and relief from there. i just want to tell you "my" good and bad.
i hope you can read about this and other posts and glean some useful info. so you can make the best of your hospital stay.
i hope that you get the best out of the hospital and stay and i hope you get relief from your pain.
good luck to you. you can PM me if you want too! my last stay was in '07.
rose Very Happy Sad

dailyha-rose

Posts : 90
Join date : 2010-02-19
Location : wisconsin

Back to top Go down

what should i pack

Post  TheBookworm411 on Sat Apr 03, 2010 11:25 pm

I have my appt next Tuesday, April 13th. I am flying out Sunday, April 11th (my birthday). I was hoping you guys who stayed there could tell me what to pack. My office had a bake sale and raised enough money to pay for my airfare and hotel for 4 nights in case I don't get a bed right away. I am so lucky!! But I don't want to pack much and I don't know what I should bring. Should I bring pajamas or sweats or regular clothes or what??
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

MHNI/Chelsea

Post  pilot57 on Sun Apr 04, 2010 7:36 am

They recommend that you wear comfy clothes during the day. I wore sweats but somedays didn't change out of my pj's for rounds with the doctors because they came early. I would suggest layers as I found it to be chilly at times. I appreciated the blanket my daughter sent to me!

Modest pj's, a robe, and comfy clothes work great. There are laundry facilities in the basement.

Good luck. I really hopes this helps you!

pilot57

Posts : 54
Join date : 2010-03-17

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  Paradox on Sun Apr 04, 2010 8:13 am

Bookworm,

I thought you sounded like a nice person and you really must be for your office co-workers to think that highly of you. You must work with a great bunch of people.

Good luck Bookworm. You've got us all on your side! cheers
avatar
Paradox

Posts : 1698
Join date : 2009-12-03
Location : Midwest

Back to top Go down

I was really humbled by my co-workers help

Post  TheBookworm411 on Sun Apr 04, 2010 5:06 pm

That's probably the nicest thing anybody has ever said to me. Thank You so much!!

You know....I really don't think much of myself....I've had a really hard life....bad childhood....bad marriage....autistic son....plenty of ill health....but I try to be the nicest person I can be and try really hard to never hurt anyone else like I've been hurt. My friends say I'm very strong for all of the things I've lived through....and that I should write a book about my very interesting life....but I don't feel like I deserve this really nice thing they have done for me. It makes me cry. I do not encounter nice people very often and my defense for mean people is to "kill them with kindness" so they aren't as mean hopefully. I've learned to never expect kindness. When I found out that my office did this I was completely humbled and overwhelmed. I have worked there for 10 years and I do work really hard and try to help everyone. I am good at what I do but I also come across as very bossy and motherly and some people don't like it. I am surprised that so many people are willing to help me financially. They are also making the travel arrangements and everything b/c when I tried I had myself flying into Cleveland and driving 159 miles to Ann Arbor. I can't even recite my home phone number anymore. I keep writing down my ss # instead. I'm sure all of you know what I'm going through with the memory/thought process problem. It's why I am finally going to MHNI. Before now I kept believing I would wake up tomorrow all better....for almost 3 years. I kept thinking how can someone have a bad migraine nonstop for over a year and a half. It really seems impossible. Now I am starting to worry it might just kill me b/c it hurts so bad sometimes in my rt temple. I am so scared. I am scared I will never get my life back. I am scared my trip to MHNI will fail. I am scared I will have this pain forever. This migraine has made me prematurely postmenopausal. I finally had a blood test to find out for sure. I am 43 yo and I am almost completely through menopause or maybe even all the way through....in 1 year. What the other people have told me about MHNI helping them live with the migraines even if they haven't taken away the pain is very promising. I want to go back to work so bad. My office of about 70 people have raised something like $1,300 and my company is matching it. They are paying for my trip and the rest they are going to pay for my COBRA so I won't have to worry about insurance for a few months. I don't have anyone in my life to help me in any way so this was a really big deal to me. It keeps making me cry. I am also very scared to fly b/c altitude sickness has always been a problem for me anyway. I haven't flown for years b/c of the migraine. Now what will it do to me??

-Debi (grateful for all of you)
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  HeelerLady on Sun Apr 04, 2010 6:23 pm

Debi,

What a wonderful out pouring of love and support for you. I'm so glad that someone took the time to take care of all the details for you...you sound like you are struggling so. Which does break my heart...

For flying - I absolutely hate it and don't fly well (even worse since the M have become chronic). My ears don't adjust well and the pressure change just makes me absolutely miserable. If you are anxious about this (and it sounds like you are a bit), see if your doctor can prescribe a bit of a sedative. If you are anxious, the M will probably get worse and if you can relax a bit that may help. I got some hard candy for take-offs and landings (you could find ginger ones if you get an upset tummy). If you wake up with a mild M on leaving day - treat immediately, don't wait as we are prone to do. Have your medications with you and take as you need to - flying is hard enough but if you can premedicate or head it off: do it! If you are sound sensitive - look at getting some noise canceling headphones (I know the plane ride can be noisy) and perhaps a sleeping mask if light is bothersome.

I hope your trip goes well and they are able to provide you with some relief.

Becky
avatar
HeelerLady

Posts : 1122
Join date : 2010-02-04
Age : 37
Location : Wisconsin

Back to top Go down

the trip

Post  TheBookworm411 on Sun Apr 04, 2010 6:48 pm

My migraine pain is bad all the time. Per MHNI's scale it is between a 3-5 usually 4-5. The only thing I can take to treat it at this point is pain medicine. I am trying not to do that right now b/c I don't want MHNI to reject me as a rebound migraine or a drug seeker. I am also terrified that taking pain medicine before or during the plane ride will make me have trouble getting on/off the plane or whatever. I heard a news thing about some celebrity who had to be taken off a plane physically once b/c she took too much of something and that idea just terrifies me. Even though I have been taking the same pain medicine for a couple of years and I am pretty clear headed with it I don't know how the plane ride will affect me. I want to be as clear headed as possible. I ALWAYS have earplugs, earbuds, dark sunglasses, eye coverings, etc. I'm making my migraine worse just worrying about it.

I am still hoping that someone who has been at MHNI can tell me what to pack. I am a worrywart obviously. I am trying to do everything in advance so I don't forget anything.
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  TheBookworm411 on Sun Apr 04, 2010 6:49 pm

I just noticed pilot57s post. thank you that helps a lot.
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  Paradox on Sun Apr 04, 2010 8:30 pm

My son is autistic also (as well as mentally handicapped). That creates a whole different set of challenges in our lives. How old is your son? Mine is 20.

Aw heck, a lot of people like us bossy, motherly types. They like you $2600 worth! WOW!

Debi, I'm wishing you all the best. If you want to private message me we can compare notes on our boys.

Will you have a laptop with you in MI?

Sending you hugs and warm wishes. I love you
avatar
Paradox

Posts : 1698
Join date : 2009-12-03
Location : Midwest

Back to top Go down

MHNI/Chelsea

Post  pilot57 on Sun Apr 04, 2010 8:48 pm

Debi,

They have wireless internet at Chelsea if you have a laptop Smile.

pilot57

Posts : 54
Join date : 2010-03-17

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  Stillhurtin on Sun Apr 04, 2010 9:22 pm

The story of support from your coworkers is so touching!! Sounds Luke you deserve it though Smile

stories are helpful but each experience is unique. It's a busy busy place, and remember, we are a biased sample to seek results from.... b/c if we would have had great luck anywhere along the road we most likely wouldn't be here Sad keep that in mind and try to stay positive. I bet there are plenty of success stories from that hospital.. They just no longer belong to a "Migraine Forum" They are on the "I feel so great all the time" forum or wherever ... Lol..

My point is, don't get discouraged before you go... It's a big step. Go into it with a positive attitude and high expectations!!!

Wishing you lots and lots of success!! Smile

please keep us posted, and if you bring your laptop, we will be there with you for support!!

Jess
avatar
Stillhurtin

Posts : 341
Join date : 2009-12-06
Age : 42
Location : Chicago

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  TheBookworm411 on Sun Apr 04, 2010 9:44 pm

I will have my lap top. I do have a pretty positive attitude. I am just very scared. I will try to keep you guys up to date. Thank you so much for your wishes and prayers. The positive support is very helpful. I always forget about things like the people who got better aren't on here.

****My Son*****
My high function autistic son is 14 yo and he is a computer genius. I have 50% custody of him but obviously I can't take him all the time. I actually probably see him more hours in total than I used to though. Our schedule is M, W, F, S. That might sound weird to most parents but when I got divorced when he was 5 yo he couldn't stand to be away from either of us any longer than 1 night so that is what we came up with and he doesn't want it to change. My son loves to install new operating systems on every computer he can get his hands on every few hours. I am not kidding!! He likes Linux based OS and tries new ones all the time. He put one on my desktop last year "accidentally" while burning a dvd and erased all my itunes and my back taxes. So I have a little $300 laptop that I try to keep out of his hands. He did get me to use Fedora or Ubuntu off of a CD boot a week or so ago and managed to completely delete my ipod. There went the last of my songs I'll never get back. I had my itunes backed up but my ipod had songs on it from work and my computer at work has been replaced 4 times since I've been there. He has 4 of his own laptops to mess with but he doesn't like to see Windows on anything especially Vista. He thinks everything should be free....hence Linux and all open source software. I have to admit I do appreciate the free anti-virus and office software. My son also started pooping his pants when he was about 12 yo. The autism messages boards say it is common but with my migraine it really upsets me. I get so angry and I hate the smell and the mess and I start yelling at him sometimes. He gets angry and frustrated with me because of my migraine and because of my financial situation. He doesn't understand why I can't do things and why I can't buy him things. Because he is high functioning it is hard to tell what he does and doesn't understand but pain and money are definitely two things he will never understand. He is also very loud ALL the time.

I've never done a private chat. I don't know how. My son teaches me a lot about computers. He just pats me on the head and says "oh mama" when I say something cute like "when did you get that game?" when he told me he installed Firefox. He thinks everyone on the planet knows everything he knows. I try to explain to him but he doesn't get it. He'll NEVER stop trying to get me to program with him. I gave in once or twice but its HARD and it SUCKS!! Not my forte at all.
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  Paradox on Mon Apr 05, 2010 9:04 am

I'll send you a message. If you want to send a message to some one click on the line that says "You have no messages". It's right next to Log out. Then click on the box that says "New PM" in red letters. Type in the username of the person you want to send the message to. Mine would be paradox. Then type in your message like you would if you were typing on the forum.

If you're not sure of a username click on "Find a username". Then you can truncate a search if you're not sure how to spell it "para*". Hit "select" when the correct one appears.
avatar
Paradox

Posts : 1698
Join date : 2009-12-03
Location : Midwest

Back to top Go down

mhni and chelsea

Post  dailyha-rose on Tue Apr 06, 2010 11:36 am

good luck to you. it sounds like your coworkers love you. the ginger candy i take when i cannot take crystallized ginger is called gin-gins by the ginger people. you have been given great advice and info. from all the posts. i had a matching jacket and skort that i wore with a button up shirt (while i waited for admission) when i went to a fancier rest. or to the purple rose of cairo theater. the white oak inn is part of the chelsea campus and is a good price and has a kitchen so you can use the refridge. sink and microwave to eat lunch and dinner. granola bars and fruit, juice are your breakfast options. the hosptial will send a van to pick you up if you stay at the inn. you might find that the farmers market is going on some afternoons in the hospital parking lot.
casual is the word for your clothing, there was a washer and dryer in the basement.
just make sure your insurance covers both your initial pre-admission visits with the neuros. and the psych. and all the visits during you actual stay/admission in the hospital.

i wish you good luck and good health. and i cannot wait to hear from you.

rose bounce

dailyha-rose

Posts : 90
Join date : 2010-02-19
Location : wisconsin

Back to top Go down

MHNI/Chelsea Hospital update

Post  TheBookworm411 on Mon Apr 26, 2010 8:27 pm

OK, vision is a little blurry and I just got my nighttime Protocol (Norflex) and my pills which we have switched and these really help. I peed the 3 night in a row cuz they keep a constant Saline IV drip. I got nerve blocks on the base of the back of my skull then a few day later. No pain, I was totally put under.

There are a lot of classes, on average 2 a day. They are all very good or at least thought provoking. Dr. Saper is here every day for rounds except weekends. Weekends are practically free days. The psychologist is a very nice lady. I've only gotten to see her 3 time in my 2 weeks here. Dr Saper hasn't decided yet when I should leave. He wanted to waig until my massive 3 day puk and vomit fest was over. Now they'll narow down the drugs to prescibe to me for home.He's going to set up an exercise plan. Dr. Lake is awesome. His cd is good go to sleep.

Sorry I gotta go I'n goind to pass ougl
avatar
TheBookworm411

Posts : 36
Join date : 2010-02-09
Age : 51
Location : Issaquah, Washington, USA

Back to top Go down

MHNI/Chelsea

Post  pilot57 on Tue Apr 27, 2010 8:06 am

Oh I am so glad that you are having a positive outcome with your treatment! I also enjoyed Dr. Lake, the classes and the staff. Really everyone seemed to be there to help.

Thanks for keeping us posted!

Ann

pilot57

Posts : 54
Join date : 2010-03-17

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  pjwaffle on Wed Nov 20, 2013 11:04 pm

TheBookworm411 wrote:I will have my lap top.  I do have a pretty positive attitude.  I am just very scared.  I will try to keep you guys up to date.  Thank you so much for your wishes and prayers.  The positive support is very helpful.  I always forget about things like the people who got better aren't on here.

****My Son*****
My high function autistic son is 14 yo and he is a computer genius.  I have 50% custody of him but obviously I can't take him all the time.  I actually probably see him more hours in total than I used to though.   Our schedule is M, W, F, S.  That might sound weird to most parents but when I got divorced when he was 5 yo he couldn't stand to be away from either of us any longer than 1 night so that is what we came up with and he doesn't want it to change.  My son loves to install new operating systems on every computer he can get his hands on every few hours.   I am not kidding!!  He likes Linux based OS and tries new ones all the time.  He put one on my desktop last year "accidentally" while burning a dvd and erased all my itunes and my back taxes.  So I have a little $300 laptop that I try to keep out of his hands.  He did get me to use Fedora or Ubuntu off of a CD boot a week or so ago and managed to completely delete my ipod.  There went the last of my songs I'll never get back.  I had my itunes backed up but my ipod had songs on it from work and my computer at work has been replaced 4 times since I've been there.  He has 4 of his own laptops to mess with but he doesn't like to see Windows on anything especially Vista.  He thinks everything should be free....hence Linux and all open source software.  I have to admit I do appreciate the free anti-virus and office software.  My son also started pooping his pants when he was about 12 yo.  The autism messages boards say it is common but with my migraine it really upsets me.  I get so angry and I hate the smell and the mess and I start yelling at him sometimes.  He gets angry and frustrated with me because of my migraine and because of my financial situation.  He doesn't understand why I can't do things and why I can't buy him things.  Because he is high functioning it is hard to tell what he does and doesn't understand but pain and money are definitely two things he will never understand.  He is also very loud ALL the time.

I've never done a private chat.  I don't know how.  My son teaches me a lot about computers.  He just pats me on the head and says "oh mama" when I say something cute like "when did you get that game?" when he told me he installed Firefox.  He thinks everyone on the planet knows everything he knows.  I try to explain to him but he doesn't get it.  He'll NEVER stop trying to get me to program with him.  I gave in once or twice but its HARD and it SUCKS!!  Not my forte at all.
Hey guys, her autistic son here - now 17. I'd just like to let you guys know the reason she stopped posting here is because she died in December 2010. We were on very good terms when she died (thank god no last minute arguements or anything like that to make me feel guilty) but I still miss her very much.

Coincidentally she has really been only the one in my life that I have really truly deeply loved and cared about. In a lot of her posts she has said I was mad at her, but this was never true - I just missed her so much that I'd beg her on the phone to pick me up.

Now I'm sort of in the same depression/life's hopeless boat she was in, sadly. It does help to see her posts since I see how much she underestimated her abilities, relationships, and quality of life and makes me think maybe I've done some of the same.

The cause of death, as the police told it, was that she had taken too many pain pills - she had just gotten shingles a *second* time and had a horrible migraine knowing she'd not be able to see me for a month or two again. She died peacefully in her sleep in the backseat of her car.

My best advice is to let a loved one or friend handle your medicine and maybe to get some sort of gadget to limit the administration of the pills so a tragedy like this one doesn't repeat itself.

If anyone has any questions or comments about my mom or me feel free to post or PM me.

PS. No I don't poop my pants anymore

PPS. She said this hospital was really good and helped her out a lot (but it was unable to completely cure her migraines and they remained chronically debilitating, albeit somewhat better)

PPPS. Turns out I'm transgender as well - sucks I was never able to tell her in time and get help - turns out autism correlates heavily with transsexualism.

pjwaffle

Posts : 1
Join date : 2013-11-20

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  Migrainegirl on Thu Nov 21, 2013 10:52 pm

PJ,

I am so sorry to hear about the loss of your mother. Migraine is a terrible disease and many people don't realize the many health risks it carries with it, including those from medication. I hope you are able to concentrate on remembering the good times with her, and not the pain of the disease. Thanks so much for sharing with us.
avatar
Migrainegirl

Posts : 999
Join date : 2010-07-19

Back to top Go down

Re: MHNI Michigan Migraine Hospital ?? & Chelsea Hospital

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum