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Backsliding in recovery - Page 33

post #961 of 1017
By the way, GSK is working with me on the bad lot of Imitrex.
post #962 of 1017
Thread Starter 
I'm embarrassed to look back at this and see that I posted about my trip the pain clinic twice.   I didn't realize I'd done that.   It is SO frustrating not to remember things!

It's odd that you say you smell things, sib.   I smell stuff, too.   I can't remember what it was, but I smelled something a few days in a row.   Jeff might remember.   It wasn't a bad smell....something like citrus or broccoli cooking or something I shouldn't have been smelling.

I've had the same ski dream over and over, too.  I'm back to not sleeping very well and I do sleep in the early morning (hence, the dreaming), but I'm lucky to get a block of 4-5 hours at a stretch.  

The dream is getting better.   The snow is early season (or late, can't tell), and I'm getting progressively better at skiing.   I started dreaming this a few years ago and was on the beginner runs, now I'm going into drops and catching air saying things like "Huh.  That wasn't all that gnarly."   I'm insane.  I can't be comfortable with my skis a foot off the ground and there's no way I'm dropping 20 feet down a chute and skiing through crud.   Yet I do.   Ah, fantasy!
post #963 of 1017
I took the Lyrica last night, then again this morning.  By 10 AM I felt the usual daily pain and nausia coming nevertheless. It didn't seem as bad or as quickly onsetting so I tried to take Naproxin instead of Imitrex to see if I could resolve it without Imitrex.  I also tried regular asprin, but by lunchtime I had to drop a piece of Imitrex inorder to continue working.  I'll give it two weeks to be sure, but I'm thinking that the Lyrica isn't doing squat for me.
post #964 of 1017
I think Lyrica is another one of those "building" things.  Sleddog's daughter was taking it for RSD as I recall.  
post #965 of 1017
Bonni,
I've been reading bits of this thread off and on for a while.  I'm so sorry to hear of
your continuing saga with pain.  

I'm wondering if you've considered the possibility that you may have lyme disease?
I hiked with a person last weekend who has it.  It seems that doctors are reluctant
to diagnose lyme disease, but evidence is mounting that it can be at fault for a number
of symptoms similar to yours.  Is this a diagnosis that you have considered?  

In any event, I hope things get better soon for you.    
post #966 of 1017
I haven't looked, but I seem to remember her being tested for that. 
post #967 of 1017
Quote:
Originally Posted by LiquidFeet View Post

Bonni,
I've been reading bits of this thread off and on for a while.  I'm so sorry to hear of
your continuing saga with pain.  

I'm wondering if you've considered the possibility that you may have lyme disease?
I hiked with a person last weekend who has it.  It seems that doctors are reluctant
to diagnose lyme disease, but evidence is mounting that it can be at fault for a number
of symptoms similar to yours.  Is this a diagnosis that you have considered?  

In any event, I hope things get better soon for you.    
 




Quote:
Originally Posted by sibhusky View Post

I haven't looked, but I seem to remember her being tested for that. 

IIRC, she's been tested TWICE for it.

  I had a pain free day today.  I'll get excited if I can go more than two weeks without the onset of oppressing doom.  Many prevention regiment I've tried work for a week or two then fizzle out.  The only thing that worked for more than a month was when I started skiing again in 2007.  I had a three month spell where I only got about two or three migraines a month  If I wasn't so obnoxiously happy all the time I'd say my pain had to be psycho somatic. 
post #968 of 1017
Quote:
Originally Posted by sibhusky View Post

By the way, GSK is working with me on the bad lot of Imitrex.

Bad lot?  How much defective product did you have?  I've been using the generic sumatriptan 100 mg tabs with no regrets.  I also gave up the stat dose script..  It works a bit quicker but doesn't last as long for me.-not worth the price difference.
post #969 of 1017
I get the inhalers from Medcohealth via mail.  Because they are, I suppose, liquid they are more prone to temperature fluctuations, but they act faster and I don't have to worry about puking up something I just swallowed.  HOWEVER, one thing I hadn't been thinking about was the very likely possibility that they might be damaged in transit.  Anyway, this spring it seemed that Imitrex just wasn't working as well as it used to be.  Sometimes it would, sometimes it wouldn't.  I was down for entire WEEKS.  Finally in June, during one of these episodes, I decided on dose number four to open up a newly arrived box and voilà, I could feel it begin working within 10 minutes.  I suddenly realized that what had been going on was that I had a bad lot of Imitrex and I went around to all the trash cans in the house rooting for the inhalers.  Sure enough, they all had the same lot number.  I had uneven results because for a while some of the inhalers had come out of my handbag, some out of my fanny pack when I was skiing, some from my car glove compartment, etc.  Depending on what lot they were from, they may or may not have worked.  So, I contacted GSK and Medcohealth, not so much about the used boxes, but because I still had product left and I didn't want to use it, but it was MONEY sitting in my drawer.  I've already received a replacement for that box, and may receive a replacement for the entire shipment, not so sure of that yet.  I'll let you know.  The shipment arrived in December and although handed over directly to my husband by UPS, goodness knows how long it was sitting in the UPS truck at subzero temps before that.  It's supposed to be kept between 30 degrees and some other temp like 80.  So, I need to look at the tablets, because realistically winter and summer temps are going to fall outside those ranges.  I also now plan to always take the second dose from a different lot than the first dose, just to be on the safe side.  

Quote:
Originally Posted by crgildart View Post




Bad lot?  How much defective product did you have?  I've been using the generic sumatriptan 100 mg tabs with no regrets.  I also gave up the stat dose script..  It works a bit quicker but doesn't last as long for me.-not worth the price difference.
post #970 of 1017
Quote:
Originally Posted by sibhusky View Post

 It's supposed to be kept between 30 degrees and some other temp like 80.  So, I need to look at the tablets, because realistically winter and summer temps are going to fall outside those ranges.  I also now plan to always take the second dose from a different lot than the first dose, just to be on the safe side.  
 

I've kept the statdose injections in my our cars, and some sat there for probably three months before they got used.  They are liquid and the temps here range from about 15f to about as hot as a car can get in the summer.  I realize that storing them in extreme temps isn't recommended, BUT... I've NEVER had one not work at all.  I have some not work as well as they usually do.  I have actually heard that managed care plans and even retail pharmacy have ended up with and passed on counterfit products.  Imitrex was one that I heard by name in the report- on ABC 20/20 or a similar show...

Day 4 on Lyrica.  3 days still needing a hit of Sumatriptan/Imitrex. one day headache free (Saturday).  I'll give it 2 weeks before calling it a failure.
post #971 of 1017
Well, that is why I am returning directly to GSK and not to Medco.  Both sent me mailers. 
post #972 of 1017
Thread Starter 
Liquid Feet, yes, I've been tested twice for Lyme, and at a year's interval in between or something like that.

Jeez, guys, I've never had Imitrex suggested to me, although I have offered that suggestion to both the neurologist who quit on me first AND the pain clinic docs who dumped me.   When I see the Headache clinic in Worcester in October, I'll mention it again.

This morning, I put my cereal in a glass instead of a bowl and had no idea what I was doing.  Sometimes I scare myself.   Mornings are the worst.

I push through it because I don't want to sit and cry all the time, although the urge to just give up is strong.   The only thing I'm on now is 10 mg of Paxil, which is doing nothing.  The heat isn't helping at all.   No one wants to prescribe anymore since everything I've tried is worthless.  There's no need to take OTC meds, and I don't have a stronger thing to take.   I'm truly disgusted with the medical profession.   3 visits and you're passed on to other clinics?  What the hell! 
post #973 of 1017
What the heck, you have horrid headaches and no one has given you a SAMPLE of Imitrex?  Of course, you've got a lot of other stuff going on, but if the headache goes away, maybe you'll be able to function.  I'd just ask the guy to give you a prescription for 1 box of six inhalers, enough to try it. 
post #974 of 1017
Thread Starter 
I've even asked!   Since I am not exhibiting signs of a 'real' migraine .....light and sound sensitivity.....lots of the headache meds have been ruled out as a remedy.  I had to beg and plead and eventually demand  Neurontin.   I guess I'll have to do the same and try Imitrex. 

Although, I just have my PCP to go to now.  I've been dropped by everyone else.  I'm still pissed about that.
post #975 of 1017
Hi Bonni.  Haven't been lurking here lately because I've been injury free .  I have "atypical" migraines (not exactly textbook "classics" in other words) and Imitrex is a true Godsend for me.  I can't believe no one has even let you try it...  INSIST on a sample next time you go see a doc.  I'd be a little careful of the nasal one if I were you because of the question of nasal damage you had, if my memory is working correctly.  I take the 100mg and within 20 minutes I can tell it's working, and at exactly 60 minutes it's like someone has shucked all of the horrible symptoms out of me.  There are also clinical trials going on with drugs that will replace the triptans (i.e. Imitrex) that do not have effects on the cardiovascular system OBTW.
post #976 of 1017
Thread Starter 
I will insist upon it when I go to my Oct 6 clinic appt.

FWIW, I have been in Spokane for 8 days, and I'm feeling GREAT!   My headaches are manageable and I'm working, active, productive and happy.   I've stopped taking Benadryl (Tylenol PM, too) to help me sleep, and I sleep well.  I'm sleeping on roll away cots and a horrid bed, and I still sleep soundly.   Something is here (or not here) that relieves the pain.   I can't explain it, but it seems to be working.   I don't want to leave.  :)

GarryZ, I'll look you up soon.  I assume you're home from Bumbershoot? 
post #977 of 1017
Try not to move anything with stuffing (sofas, mattresses) from the east, either....

When are we meeting for that hamburger?
post #978 of 1017
Thread Starter 
Hey Sibhusky....it's looking like we'll be caravaning over for Sept 26.  There's a ginormous family reunion (daughter's dad's side) in Libby that weekend.  Will you be available?
post #979 of 1017
I'll have to see.  Wasn't expecting a weekend thing.
post #980 of 1017
Thread Starter 
I can't justify missing the family reunion by not going on the weekend.   Darn.   I hope it works out! 
post #981 of 1017
Thread Starter 
It's official:  after a month here in Spokane, I feel awesome.   I'm in way less pain and I am working and functioning without meds.

We've started the moving process. 

I'm done with doctors, meds and worthless procedures. 
post #982 of 1017
Quote:
Originally Posted by Bonni View Post

It's official:  after a month here in Spokane, I feel awesome.   I'm in way less pain and I am working and functioning without meds.

We've started the moving process. 

I'm done with doctors, meds and worthless procedures. 
Woot, woot. I expect to see you and J this winter.
post #983 of 1017
Quote:
Originally Posted by doogiedoc View Post

 I can't believe no one has even let you try it...  INSIST on a sample next time you go see a doc.  I'd be a little careful of the nasal one if I were you because of the question of nasal damage you had, if my memory is working correctly.
+1
Imitrex and generic sumatriptan is the only thing that works for me consistently.  10 years, 4 neurologists, and two different headache/pain clinics haven't yielded any results , but Imitrex really works.
post #984 of 1017
Update on how you're doing?  We are assuming something was in your environment there to make you so sick.  Any idea?  Out of curiosity did anyone do a toxin/heavy metal screening test on you?

Dr. J
post #985 of 1017
Thread Starter 
Dr. J........heavy metal screening?  No, not that I recall.

The trip home was revealing.  I did a gradual slide from energetic/mostly pain free to flu-like symptoms over the space of 10 days or so.   Now I'm merely miserable (as opposed to the last 2 days of sipping liquids and sleeping like Rip Van Winkle).  I started feeling crappy when I stopped in Ohio.  The minute I turned the water on in the shower at the hotel I smelled something chemically ghastly.  It was so vile I didn't want to shower. 

I'd been drinking water from a 2 gallon Coleman cooler all the way across the country and I spent 5 days in Iowa and refilled the cooler for the rest of the trip home.   I'm not home a week and I'm down.

It has to be something here.  

If we move and I still have this, it has to be Jeff. 
post #986 of 1017
Thread Starter 
Update:  I'm leaving Massachusetts.

I have the truck reserved and I'm pulling out of town for Spokane on Feb. 21.  I just can't take it anymore.  Each day is the same:  it's like the movie Groundhog Day.   I want the movie to end.  I'm hoping that this move will do it.

Jeff will be staying behind with the bare essentials and will sell the house....... while I paint-for-rent the exterior of a 3 bedroom house in Spokane.      

I'm spooked to ski right now because the last thing I need is a ski injury with the whole house packed up.   I'm driving a 26 foot truck with my Subaru trailered and cats riding in it and I need to be in the best shape I can be for the cross country winter trip.   I'm just not eager to risk it, and that's sad, too.  

I want my life back.  Whine, whine, whine.

Hello Spokandyland!  Let's hope it's a cure for what ails me.
post #987 of 1017
 Good luck Bonni!
post #988 of 1017
You should leave the 20th and ski with us at Blue Knob in PA on the 21st, then moooove it on out West.
post #989 of 1017
Thread Starter 

I wish I could, but a friend from Iowa is coming out the 13th to help me move and I'll be giving her a ride back home.  I can't ask her to sit in the lodge.......or can I?  ha
Seriously, I can't leave cats and friend in a huge truck while I go ski.  You'll have to come out West and ski with the Pacific NorthWet contingent.

 

SkiMangoJazz, we have free passes to Berkshire East.   We'll have to pick a Sunday to meet you there (our Saturdays are taken with ski patrol duty).   PM skier_j and let's meet before Feb. 15!

post #990 of 1017
 I'll be there every Sunday between now and Feb 7th, come on by the new lift should be open soon.  Nice fun terrain including a nice amount of fun blue runs that you won't have to risk hurting yourself on!
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