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Topic: Pain Clinic, brain mush, failed everything!!! (Read 368 times) |
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Tara Ann
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It's always darkest before the dawn.
 
 
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Pain Clinic, brain mush, failed everything!!!
« on: Apr 29th, 2007, 3:52am » |
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I am wanting badly to update you all on me. But my mind is
going a million different directions. Im still struggling just as
hard with the beast. The neuro didn't blow me off, but he is
completely stumped, shuffling through my records repeatedly
as he speaks, naming off meds and treatments tried and failed
and coming up with nothing new to try! So he is trying to get me into a new Pain Clinic the first of the week to try and get me some relief while we find a prevent or SOMETHING to cut these friggin things down atleast some!
Ok I'll be back asap to tell ya more as I can think. I had pretty much a novel and a half to write you all but can't seem to get it from my brain to the keyboard right now!
*edited to ask...... wtf will the pain clinic do that a reg doc or neuro can't?
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| « Last Edit: Apr 29th, 2007, 3:53am by Tara Ann » |
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #1 on: Apr 29th, 2007, 4:09am » |
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hang in there Taraan
maybe the pain relief clinic will just ease you a bit  maybe not 
just see what they can do
hugs an vibes
Zany
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plenty of time to sleep now me headaches aint too bad
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Mac_Muz
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new hampster "eat seeds or die"
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #2 on: Apr 29th, 2007, 10:35am » |
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I sure hope you find something that works sooner than later... 
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Maffumatt
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #3 on: Apr 29th, 2007, 10:37am » |
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Keep fighting TA, never give up, never give in.....
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #4 on: Apr 29th, 2007, 12:02pm » |
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hear you loud and clear tarann
i prey that you get some releif soon.
hang in there girl..we are all rooting for you
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today is a gift.....thats why it is called the
present.
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Jonny
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #5 on: Apr 29th, 2007, 12:35pm » |
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STFU and deal with it!!!!!
*Motivational speech over* 
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| « Last Edit: Apr 29th, 2007, 12:40pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Tara Ann
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #6 on: Apr 29th, 2007, 4:34pm » |
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Thanks all. I really am confused about this whole pain clinic deal?! I guess if my neurologist can get me there this week I'll find out what that whole deal is. I'm just feeling a bit lost, well more than a bit i suppose 
Hey Jonny I'm giving you the traditional New Hampshire to Mnot a very nice person salute
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ClusterChuck
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #7 on: Apr 29th, 2007, 4:44pm » |
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on Apr 29th, 2007, 4:34pm, taraann wrote:| Hey Jonny I'm giving you the traditional New Hampshire to Ma$$hole salute |
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There, I fixed it for you ...
You can type out fuck in plain language, but not a$$hole .. ??
LOL
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lionsound
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breathe
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #8 on: Apr 29th, 2007, 4:52pm » |
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Hey, Tara,
Why can't your neuro call the Headache center at Dartmouth Hitchcock?
Don't let him give up on you!!!!!
I hate it when a doc says there's nothing more....that's not right and unless he's called every single HEADACHE SPECIALIST on the planet.... he needs to work harder!!!
I could be wrong, but..
I think a pain clinic deals with the pain itself rather than the specific ailment (and prevents) like CH. They do more narcs and botox and things like that. And they also handle other types of chronic pain too ..like back pain. They are trying to make you comfortable with the pain.
You hang in there!!! We are cheering for YOU!!!
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| « Last Edit: Apr 29th, 2007, 4:56pm by lionsound » |
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Tara Ann
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #9 on: Apr 29th, 2007, 5:58pm » |
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I origionally was very upset thinking my neuro was giving up on me and passing me off again like so many other docs in the past have done to me. But no, he's not giving up on me. My understanding so far is he's getting me into the pain clinic to help get me more comfortably through these next few weeks (well fingers crossed that's the most it will be, I have had bad flare ups like this in the past when I have gotten outta control with CH and they last usually a few weeks, but one time in particular I will never ever ever forget lasted almost 6 months, not nonstop hell but pretty damn close) and he's going by my past history that I am in one of those outta control flare ups that in the meantime of finding SOMETHING to help break it , that the pain clinic maybe can help to make me more comfortable during the time it takes to find that something.
Dartmouth is an option. I was admitted for about a 2 week period a few years back once during a bad flare up. I just am hoping I don't have to go that route. It's almost 2 hrs away from here, I have the kids to think of. My neuro and I have that option on the table but I'm hoping we don't have to go that route. I will find out more Monday I assume.
I have the Topa (now up to 25 mg twice a day, I'm tapering down the the pred (and the goal is never to do steroids again!, the doc is afraid of the damage I have done to my body because ofthe amt of steroids I have done over the years, bones, teeth, ulcers, etc etc)
(yah really how come we can write fuck but not a$$ ?) lol too fuckin funny
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andrewjb
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #10 on: Apr 29th, 2007, 6:30pm » |
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hope it all settles soon. andrew. fuck, FUCK. arse, ass, a$$. just had to have a go..... arsehole, not a very nice person, a$hole.
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| « Last Edit: Apr 29th, 2007, 6:31pm by andrewjb » |
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Gator
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #11 on: Apr 29th, 2007, 8:29pm » |
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Tara I think there are a few people on here who have gone the pain management route after trying everything their doc could think of and had their quality of life improved on the the various meds available in these clinics.
I agree that narcotics have no place in the standard treatment of CH, but they do have limited applications in patients who are refractory to preventative and abortive medications. It's all about quality of life. You have to do whatever it takes to survive and be there for yourself and your family.
I'm not saying you should give up trying or resolve to be on narcs the rest of your life, just not to prejudge what the pain management people might be able to do for you.
You have my hopes and wishes that you come out of this out of control phase you are in very soon. 
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BB
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #12 on: Apr 29th, 2007, 10:45pm » |
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Hi TaraAnn,
Pain clinic is not all about pain killers, its the opposite, they are very strict on prescribing narcotics.
Daniel went to a pain clinic. Michael ( Wildhaus ) did too. They both found what they had learnt there tremendously helpful.
At a pain clinic, you learn about YOUR pain. Why and how and where you feel it and how to control/cope with it. The treatment program usually consists of multiple aspects from physiotherapy to psychology to counselling to medication to surgical nerve blocks.
Daniel also learnt meditation techniques, breathing techniques, relaxation techniques ... which were tremendously helpful not just in time of physical pain but also when distressed or anxious.
Chronic pain is an entity in itself. It evolves from simple pain response to a cascade of neurological, biochemical to psychological reactions in the body. Its the complexity of these reactions that overwhelm you and make the whole thing worse.
At the pain clinic, you will learn to recognise and response to pain the way it should be at the beginning, simply as a physical signal and not something to be fearful of.
Please do go to the Pain clinic and keep an open mind and a positive attitude, you will get a lot out of it.
Best of luck and painfree wishes.
Hugs
Annette
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BarbaraD
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #13 on: Apr 30th, 2007, 1:24pm » |
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Tarrann,
Ask your neuro about upping your dose of topamax (50mg has never done me a bit of good). My maintenance dose is 100mg a day (and I take it all at night to keep the side effects away). Except for shadows and a few breakthrus, I stay relatively pain free most of the time. If I hit a high cycle, I have to up the dose, but when it passes I can go back to maintenance of 100mg. This might be worth a try.
Hugs BD
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Jackie
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #14 on: Apr 30th, 2007, 8:20pm » |
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Tara...
Sorry you're still having such a hard time...
Barbara has given you a good tip....check with your doctor about a higher dose of Topomax. Blake took a high dose and it worked for him very well.
Good Luck, Sweetie...
Jackie
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Jonny
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #15 on: Apr 30th, 2007, 8:23pm » |
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All kidding aside, baby...I hope you find what you need and find it fast! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Grandma_Sweet_Boy
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #16 on: Apr 30th, 2007, 8:38pm » |
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Tara - Sure do hope you soon catch a break here.
What Annette told you about the pain clinic is spot on. I expect you'll come away from that experience with a whole new understanding of you and your pain.
Hang in there kiddo - PF wishes winging their way to you.
Carol
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Charlie
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #17 on: May 1st, 2007, 2:11am » |
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Lotsa luck Tara and I hope you can teach them something at the clinic....I know you will. 
Hang on kid.
Charlie
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Tara Ann
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #18 on: May 1st, 2007, 4:06am » |
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on Apr 29th, 2007, 10:45pm, BB wrote:
Hi TaraAnn,
Pain clinic is not all about pain killers, its the opposite, they are very strict on prescribing narcotics.
Daniel went to a pain clinic. Michael ( Wildhaus ) did too. They both found what they had learnt there tremendously helpful.
At a pain clinic, you learn about YOUR pain. Why and how and where you feel it and how to control/cope with it. The treatment program usually consists of multiple aspects from physiotherapy to psychology to counselling to medication to surgical nerve blocks.
Daniel also learnt meditation techniques, breathing techniques, relaxation techniques ... which were tremendously helpful not just in time of physical pain but also when distressed or anxious.
Chronic pain is an entity in itself. It evolves from simple pain response to a cascade of neurological, biochemical to psychological reactions in the body. Its the complexity of these reactions that overwhelm you and make the whole thing worse.
At the pain clinic, you will learn to recognise and response to pain the way it should be at the beginning, simply as a physical signal and not something to be fearful of.
Please do go to the Pain clinic and keep an open mind and a positive attitude, you will get a lot out of it.
Best of luck and painfree wishes.
Hugs
Annette |
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Wow, thanks so much for taking the time to type and explain that all to me. I really needed some explaining and I have been trying to do net searches and can't seem to grasp what I've been reading about it that way.
Quote:Ask your neuro about upping your dose of topamax (50mg has never done me a bit of good). My maintenance dose is 100mg a day (and I take it all at night to keep the side effects away). Except for shadows and a few breakthrus, I stay relatively pain free most of the time. If I hit a high cycle, I have to up the dose, but when it passes I can go back to maintenance of 100mg. This might be worth a try.
Hugs BD |
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I am now tapering up on the Topamax. Starting weds I will be up to 50 mgs a day (he wants me taking half in the am and half at bedtime, but if I find the side affects troublesome I will take your advice definately and talk to him about taking it all at bedtime) every week we will be increasing the dose by 50 mgs until I reach 200 mgs a day
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Tara Ann
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #19 on: May 1st, 2007, 4:34am » |
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Oh and Everyone....
I have my why me moments (what ever did I do, am I that bad a person, etc etc LOL maybe this is my hell!, Im making a bad joke here fyi) but mostly I think I'm coping pretty well. My sense of humor is pretty intact, my mood swings are pretty intense (poor poor Sam  lol ) I don't feel bad for the inlaws though (oops are my horns poking through?) But over all, stepping back I really think I have kept myself pretty much out of that depression hole, just a few quick dunks in it then I shake myself off and bake with the kids.
I'm a weirdo this time around, seems I have become obsessive about order, I have organized and REorganized everything a million times. Cleaned and REcleaned a million times. But most of all I have baked a ton of desserts. You would think I own a bakery or something! I wouldn't be surprised if at the end of this everyone gains 10-20 lbs in this house! Alot of the desserts I make take me hours to make cause of the beast, but it's nice. I take my time. I get out all the ingredients. then take my sweet time measuring it out. Walking away, coming back doing a little bit of this and a little bit of that.
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ClusterChuck
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Re: Pain Clinic, brain mush, failed everything!!!
« Reply #20 on: May 1st, 2007, 5:18am » |
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on May 1st, 2007, 4:34am, taraann wrote:| But most of all I have baked a ton of desserts. You would think I own a bakery or something! I wouldn't be surprised if at the end of this everyone gains 10-20 lbs in this house! Alot of the desserts I make take me hours to make cause of the beast, but it's nice. I take my time. I get out all the ingredients. then take my sweet time measuring it out. Walking away, coming back doing a little bit of this and a little bit of that. |
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All extra's can be sent to me ...
Chuck
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