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Backsliding in recovery - Page 32

post #931 of 1017

 Hey, Bonni -


It's been just over a year since I last logged on.  I can't sleep so I decided to check in.  


(Wow!  Different look.  Different frames.  Let's go see how Bonni's doing....)


I am bamboozled at the on-going saga.  I am also SUPER impressed with your general attitude.  You are an inspiration!




- KK

post #932 of 1017

Benidryl or its generic-diphenhydramamine is what is in Tylenol PM that helps folks sleep.  Take that instead or Tylenol PM and you'll be sparing your liver the damage that acetaminin does whle still getting the sleepy stuff.  They have it generic at Sams club and wal mart for stupid cheap prices. 

post #933 of 1017

You do build up a tolerance to it, however.  I speak from experience.

Originally Posted by crgildart View Post

Benidryl or its generic-diphenhydramamine is what is in Tylenol PM that helps folks sleep.  Take that instead or Tylenol PM and you'll be sparing your liver the damage that acetaminin does whle still getting the sleepy stuff.  They have it generic at Sams club and wal mart for stupid cheap prices. 


post #934 of 1017
Thread Starter 

Not inspiring at all, KK.   Just surviving, and not well at that.   I wish I could self-medicate safely.   Meh.


I'm reminded of a guy I worked with in the early 90's.  Chris (we called him Crispy, because he was, eventually) had an inoperable bone spur in his neck.   He was in constant pain.  He went from weed to coke to heroin in short order after years of doctors giving him Tylenol and other non-effective remedies.  He died of a heroin overdose at age 33.  


I don't want to live like this, but I haven't got a choice.  Being social is a pain, and I am starting to avoid/dread certain activities.   I like being home:  it's quiet and peaceful.   We're going to see Dickie Betts on May 20, and I'm starting to wonder what kind of hell it will be during and after.  


I'm leaving very soon for Spokane for an extended stay.  After  6 weeks away from home, I'll know more about how I deal with this in another area.   I hope for change.

post #935 of 1017

 I look forward to hearing the results of your experiment.  I may be out that way in about 3 weeks or so, if I am I'll let you know.

Originally Posted by Bonni View Post


I'm leaving very soon for Spokane for an extended stay.  After  6 weeks away from home, I'll know more about how I deal with this in another area.   I hope for change.


post #936 of 1017
Thread Starter 

Please do! 


Jeff will be joining me on June 24th.  We'll be there 3-4 days, then heading off to parts unknown across the USA.   It's gonna be National Lampoon's Vacation, sans Rusty, Audrey and Aunt Edna.

post #937 of 1017

She put the lime in the coconut
She drank em both up
She put the lime in the coconut
She drank em both up
She put the lime in the coconut
She called her doctor, woke him up


Now Let me get this straight
Put the lime in the coconut
You drank em both up
Put the lime in the coconut
You drank em both up
Put the lime in the coconut
You drank em both up
Put the lime in the coconut
You called your doctor, woke him up
You said, Doctor
Is there nothin' I can take
You say, Doctor
To relieve this [head]ache
You say, Doctor
Aint there nothin' I can take
You say, Doctor
To relieve this belly ache now
Ooh, Ooh, Ooh, Ooh


(Not meant as a knock, Bonni.  This saga just made me think of the song ... which you probably don't even recognize....)


- KK


post #938 of 1017

Harry Nilsson.  I couldn't think of the artist, but I remembered the catchy song.

post #939 of 1017
Thread Starter 

Of course I remember the song, KK.  I'm a fossil, too. 


The best thing for my head is a ROAD TRIP, with a fast car and a radar detector.  I'll see you in August.  Have a good summer, ya'll.

post #940 of 1017
Thread Starter 

I'm in Spokane, and have been here for 5 days.   I do feel better.  Headache is not so bad, I'm functioning well...other than being tired from all the work of scraping and painting.


I felt better in Iowa too, but not as much.  I think it's the low humidity combined with the lack of plant life that makes the difference.  Everything here is dead from lack of water, but normally, there is only a fraction of the weeds here that are in the East.  

post #941 of 1017

I'm glad to hear you're feeling a bit better Bonni.

post #942 of 1017

Humidity can have a big effect on allergies, so maybe you're finding the solution.  Keep on keeping on, Bonni.

post #943 of 1017
Thread Starter 

Feeling much better.  GarryZ and I went to Players and Spectators tonight and played pool and shuffleboard, and after a while they had two sound systems going at the same time.   Headache started to come back from the noise, and we left.


I do feel better, have more energy, and can function almost normally.   The true test will be going home again!  I just don't want to go home, knowing what is most likely waiting for me. 


The latest project:  Before work is started



Scraping and prepping:



Priming and getting ready for a topcoat:





I love to paint!  I'm so glad I can do this without pain.   I have missed doing work without agony!  


post #944 of 1017

So if "home" doesn't pass your next test, are you looking for a permanent relocation?


Are you doing all the prep and painting on this latest project?   If so, I'll bet it's not something you'd want to undertake back East.


Glad you're feeling up to such activities.

post #945 of 1017
Thread Starter 

Yes, Kneale, I'm doing all the prepping and painting, and you're absolutely right:  doing this in the East with the heat and humidity would not be possible.  Not at all.  If I feel bad again when I'm home, permanent relocation is Definitely coming soon.


We're working on the front of the house now.  Pictures in July when I'm home.  Here's one of the back, partially done.  The upper green is the new paint.   Same as the old paint, tee hee



I need to take more pictures, but work is moving along with only 5 days to go till I leave.


post #946 of 1017
I'm soo glad we have nice aluminum siding.  All our painting projects are air conditioned

Glad you are doing better.  Looks like it might be time for another tag sale.  That link might cost someone $20.00 well spent.  Safe travels to ya.
post #947 of 1017
Thread Starter 
Back home and crippled again.   We're putting the house up for sale in the Spring and buggering out.   I was only home a couple of days and that was it. 

My good health started to slip by the Iowa border, and I felt good the first day there, but the second day I jumped on a trampoline (Man, was that FUN!), and that's all it took.  Started feeling nauseous later that evening and didn't want to eat for fear of tossing it up.   The next day on the way home it was cooler and rainy, felt somewhat OK.  Cleveland and the Rock and Roll Hall of Fame was OK on July 4th, but had to leave earlier than I wanted because the music was fairly loud, and we stayed in Youngstown Ohio that night.  Arrived home July 6th, and by the 8th, I was back to mush.

Get me out of here.
post #948 of 1017
 And you're waiting until Spring?
post #949 of 1017
Thread Starter 
March 4, 1999 ..... I loaded up my household things and moved to Iowa.   I was stuck in Gillette Wyoming a couple of days waiting for the roads to open again (yes, they actually put down gates over I-90).   I had my Jeep on a trailer and 2 cats in carriers.   The Jeep had my houseplants in it. Even though we packed it very well, things broke when the load shifted when we almost got hit by a car spinning out in front of us in the left lane with a semi on the right.  (No, I wasn't driving).  I'll sell all the furniture before I'll move too much packed in too tight.  

I won't do that again. 

Put the house up for sale today and with any luck we could be in Spokane by Thanksgiving, but I'm not going to cross the country in a UHaul anytime after September.   I'm not crazy.  I'm not ready.  We have a lot to do.  There is no way we can move this stuff cross country with 3 cats and 2 cars at the drop of a hat.  Plans need to be made.   Jobs need to be found.  I need to sell things, pack things, pitch things.   It's a major move I've waited 5 years for.  I can wait a while longer.

Today I went to the dentist for a cleaning and it took all I had to lie back in that chair with a light shining on me.  I had sunglasses on, closed my eyes, and I just wanted to scream and run.  I hurt so bad.  I still do, hours later.   It's just my life and nothing can be done.
post #950 of 1017
Well this will make you the second person on the forums to relocate for health reasons.  Ironically in the opposite directions.  Good luck with the home sale. We sold ours and closed in mid-June.   We are economic refugees at the moment renting in Folsom.   Its a tough time to sell, but you should have an easier time finding a home in the West since it seems that we have been hit harder in the housing recession...well unless you're from Michigan. 

Cross-country moves in winter are not a big deal.  Take any highway from Interstate 70 to I-40 and sneak up to Oregon via California.  Its a slightly longer distance, but lots to see along the way.  I have seen I-80 in Wyoming closed in mid-June, and was able to roll across it in January with no trouble.  Go south, and go sooner.  I think you need to be in the West for next ski season.

Fun and games in Wyoming:

post #951 of 1017
Originally Posted by Bonni View Post

Put the house up for sale today and with any luck we could be in Spokane by Thanksgiving
Woo hoo, Queen B and Skier J moving into the "neighborhood"! I hope it gives you lasting relief, and deep contentment.
post #952 of 1017
How strange, somehow I quoted myself, so I thought I should edit to say whoa, like what's up with that?

Edited by volantaddict - 7/30/2009 at 09:49 pm GMT
Edited by volantaddict - 7/30/2009 at 09:51 pm GMT
post #953 of 1017
 Very cool, maybe you'll head up to Big Mountain a time or two!
post #954 of 1017
Thread Starter 
We will most certainly 'ski around'. 

Thanks for the kind thoughts.  I'm at a low today after seeing the PA at the NE Pain Center.   He's giving up on me already, too.

I've seen them......3 times?   Shots in my neck that did nothing, and they're at a loss after reviewing my notebook of notes from all the other specialists and are hesitant to keep rerunning the same tests/scans/etc.   He's going to chat with the other doctor and see what they can do, if anything.   I mean, this is the Pain Clinic....what the hell?   I guess I've tried all the standard remedies they can think of.   I'm truly disappointed.

(I asked about the spinal fluid issues, Kneale, and he said that couldn't be it (it's been 2 1/2 years since the onset of this).  I asked about Vitamin D metabolites, he said he could do that, but I would have other serious pain with the headache.  I don't.)

I'm still in good shape compared to others.   Mom is in the hospital recovering from having a chunk of cancerous lung removed.  She stopped breathing on the OR table and is at least out of intensive care.   She's feeling pretty miserable, but is doing OK.  I'm so glad I quit smoking 10 years ago.   I wouldn't want to go through all of that.    
post #955 of 1017
Here's hoping your relocation can occur sooner than later and that it proves to be just the remedy you need.

My wife's niece who has had the problem with excessive spinal fluid pressure (diagnosed by an ophthalmologist after she'd been the round of other physicians somewhat similar to your experience) finally had surgery to install an internal drainage system so she didn't have to continue having spinal taps every couple of months.  She's had an occasional headache, but nothing like in the past and claims most of her symptoms of fatigue and nausea that kept returning in cycles with her need for another tap have disappeared.  It's been long enough for a quarter inch of hair to grow back over one of the incision sites.
post #956 of 1017
Bonni, have you tried Lyrica  yet?  I just got back from my semi annual Neuro visit and he gave me the usual too much sumatriptan (Imitrex) is bad for your heart (but it hasn't killed you yet) lecture then renewed that script and wrote a new one to try out Lyrica.  I haven't tried that yet as it's pretty new.  Most preventatives work for about 2 weeks with me then wane in effectiveness.  I'll wlet you know in a month if it is working.

Interesting side note, my Neuro guy (Timothy Collins) was interviewed by some national news programs regarding MJ's drug use-He's some kind of renowned expert I guess.  I toyed with the idea of asking him for a diprovan script (as a joke of course).
post #957 of 1017
Crgildart, I'm now on Topamax, a TOUGH TOUGH ramp up, I thought I'd never get through it, but the migraines had become a daily thing.  And on top of that, although I didn't know it at the time, I had a bad lot of Imitrex.  The jury is still out on the Topamax, although the migraines are back to once a week again. 
post #958 of 1017
Thread Starter 
Thursday, I saw the pain clinic PA who has seen me twice.   He cut me loose, saying he doesn't know what to do with me after looking at my records.  He said he's hesitant to continue redoing the same tests over and over.  I agreed.

I asked him about the spinal thing.  He said no, that I would have other symptoms (I forget what he rattled off, something about lower back pain and other things I don't have).   I asked about Vitamin D metabolites (suggested by someone else).   He said he could do tests, but again, I don't have the symptoms he needed to see.  He suggested I go to a headache clinic in Worcester, MA and sent me out the door with nothing.   Here we go again. 

I made the call to the headache clinic on Tuesday morning and was told the person who sets first appointments is out sick.  She took my info.  I called back today since no one called me back.  I have an appointment October 6th.....with a nurse practitioner.  I don't rate a real doctor anymore.   My neice wants me to invent a game called Stump The Doctor.  I'd like to stump the doctors, but I don't see them anymore.   Why not have me talk to a janitor?

These appointments every 3 months without any remedy or diagnosis is getting really old.  It has been over 2 1/2 years since the onset of this headache and I'm no further ahead in the treatment of this.

I went to my PCP, Dr. K, on Monday to get referrals and to see if I can take a different anti-depressant since I don't feel the benefit of taking 50 mg of Zoloft anymore.  I'm depressed and my memory is shot to hell.   He starts asking me questions.
"Do you drink?"
"You don't use marijuana?"
"No.  Do you have any?  I'll take it."  His eyebrows go up.
"How about heroin?"

He just gave me a look like he was expecting me to tell him I was self-medicating.   Been there, done that, in my youth.   Not interested in travelling that forgotten road again.

He said stop taking the Zoloft and take this:  Paxil, 10 mg.   Well, just give me Skittles, why don't ya???

To answer your question, cr, I've tried Lyrica.......don't remember the side effects, but it was nasty and I quit taking it.  Topamax, too......even more nasty.   2 days of that and I was puking and feeling much much worse.
post #959 of 1017
Topomax quit working after about 5 weeks and I had weight loss and memory issues, maybe forgot to eat?  Zonogran's the worst for memory problems, better than the best dope I've ver smelled.  I'd be standing in a checkout line looking at my bank cards unable to remember any of the pin codes so I had to quit that.  It wasn't helping much anyway.  I fear Lyrica won't be much different.

I started losing at this game in early 2001, but imitrex keeps me functional as long as it doesn't kill me.
post #960 of 1017
Yeah, starting Topamax I was MISERABLE for 4 weeks, but when I tried to stop the migraines were back, so I just started playing with the dosages, and decided to chop it up differently taking smaller dosages spread out three times a day and building smaller and more gradually.  I still find I am extremely susceptible to hot weather and my nose picking up smells that no one else can, it drives me crazy.  I wouldn't mind some weight loss, though.  I am being careful about drinking a lot of fluids as well.  I've been on it for 8 or nine weeks now and the migraines I get are the level of pain I can deal with.  I hope they will begin to space out a bit more, I've actually gone slightly above the recommended dosage at this point on the Topamax, still doing it three times a day rather than two times a day.  I felt that I was getting swings in my system that were making me so nauseous during the ramp up period and when I backtracked a bit in the levels and just took smaller doses more often this helped noticeably.  
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