Mel
 

Me as well,can you repace any ingredients for a diabeic who likes
muffins?? i'm sure Bob can tell his girlfriends all about them!!:)

Yorkie mom were you in the middle of those awful Texas Storms,my son
and wife make it ok in OK!! We are about to get the end of them in Mo.

Mel i' going to start a BOB-AND-FRIENDS rent business for those who,like
myself. Who drop more food on the floor then get in there mouths..But it
was YM idea so i will lend him and the girls to her.

Jak i'm just a couple yrs. older then you,come back and do what you need
to do ,i hope i never get to the point where i can't listen. I remember when
the hands went, the PN came to visit my hands,i thought goes your dignity
Sue. It just slows me down a little and it's harder to open things. Most of
all i wanted to stop going to resturats,what a chore,tying to hold napkins
piled all over me with my left hand,so not to drop food all over my clothes.
People are staring i would tell my children,they would look around not seeing
seeing what i thought i was seeing..So they told my 91 yr.old aunt,very
wise very funny,for my 60th birthday all wraped in a lovely box,she made a
beautifull lace what look like a bib!! On it she embroided STARE AT ME AND
YOU WILL GET WHAT I HAVE!!I just love her,had people come up and ask
where they could buy them. I just told them one of a kind :D Sue

Is there a single person here...
 

who has NOT experienced THIS to any degree?

http://www.msif.org/en/ms_the_diseas...elination.html

Never forget that for folks w/MS the demyelination occurs in the brain and is less likely to repair. We are lucky that we can and DO benefit from their plights' advocacies and researches.

Venting IS useful, it is necessary. Use what is and can be learned to the fullest. I wholly agree with BobB that pain control has to be the priority now.

If you are in an HMO, go and read your plan booklet-then if they have an on-line site...go to the site map and find out what the P& P's [policies/procedures] are for appeal...talk to a 'patient representative' [knowing who THEY work for] about your need and concerns about pain issues and potential therapy denials.... Reading THE BOOK - and getting to the site map you can query about specifics and know where the HMO is coming from [containing costs?]
Otherwise aside from appeals, if you have options for other plans during an open enrollment. When the time comes, if you or any others need to know what to look for...I can help some...I used to be an benefits coordinator[one of many] for a big company on the east coast...over 20 plans- 50/50 HMO and PPO's.. and all the snags that can go with enrolling, retiring, disability and COBRA. All I can do is see what's out there for P&P, but at least you'd know the lay of the land? Employers can be penny wise and pound foolish in regards to many PAIN issues. Others here can attest better than I that getting done what needs to be done CAN be done.

I Hope venting can be constructive - j

For Lanny42 and others with PN pain - Methadone
 

Lanny42, I have tried the patches...I wouldn't recommend them for several reasons. They are very expensive. They don't last the 3 days they're supposed to, barely 2. They are a hassle to keep track of. You will build up a tolerance to them very quickly and have to increase constantly.

I have tried just about everything. What worked the best for me, and still is 6 mos. later is, believe it or not, methadone. It works very well for nerve pain. It has very little to no side effects. It is easy on the body(few metabolites).
Tolerance is very slow to develop. It is unbelievably inexpensive. It was approved last June. for pain treatments. It has helped me more that anything.
I know it has a bad rap as a heroin withdrawal drug, but for pain relief, it has no equal. My pain specialist recommended it and I'm glad he did. Hope this helps. Nacho.

Hi Nacho:

Does the methadone affect the digestive tract like the fentanyl pain patches (or vicodin) did??? Alan never was able to go to the bathroom while he wore these patches. He went, maybe once a week. I mean, it did what it had to do for the pain but the side effects were horrible. And he was up to 125 of the fentanyl. My friend who had stage 4 lung cancer, (this was 5 years ago), we only went to 100 of the patch before he passed away.

Just imagine, Alan was on 125 of the patch and took vicodin for breakthrough pain. All I can say is thank God for Dr. Theirl and whatever he did to get rid of Alan's pain so now he doesn't use anything for pain!!!



FOR SUE:
If you read my recipe for the muffins, there is no sugar added. Of course there is some sugar because it starts with a Jiffy muffin mix but after that, it's all splenda and no sugar added apple sauce.

I think, if you go on the interent and type in "no sugar muffins", you might get a recipe using bisquick, or pancake mix and sugar substitutes.

But honestly, I eat one or two of these things every day and this morning my sugar reading was 117. It was 400 4 years ago. So I must be doing something right??? I never put sugar in my coffee or whatever. There is no sugar in my house. I only use Stevia or Splenda.

Thankfully, we have these muffins so if Alan wants a snack, besides his cereal, yoghurt, bananas, etc. (he eats all night by the way) & I don't eat after 6 p.m., well, I guess I don't have his metabolism and he goes to the gym every other day so he builds muscles.

The day I pick up a weight again, well shoot me!!!

Melody

Hi both of you,
 

Hey,
I remember handing out a tiny cup of Medthadone to heroin addicts
in the 70's. It was court ordered then,there only complaint was burning
in the stomack. I always had mixed feelings about the whole thing.
But it's a 2007, do you get the script like morphine sr where you have
to have it mailed in or have to walk (which is more like stagger) for
me, into the drugstore??? I wonder is it legal in every state??:confused:


Thanks Mel got you..Do you remember Scalloped Corn or Corn Pudding??
My daughter 5 more days and counting had a graving for mom's what
she remembered was cornbread,all i could think of was Jiffy mix and
creamed corn. Give me a few days i'll get it..2 hrs. later a e-mail mom that
was so YUMMY !! But i think somethink was missing,by the time i e-mailed
it to her,the graving was over..:hug: :hug: to everybody Sue

Hmmmmm
 

That whole meal sounds fabulous Melody! nide44....it wasn't you.

Methadone...
 

After I had a nasty burning reaction to radioactive iodine that would NOT stop, a friend, who is maintained on Methadone, gave me one pill. Boy, did it do a number on me. The pain stopped all right-it was HIGHLY effective for that-and it lasted about 24 hours... However, I could not keep my eyes open so that I could see the direction to the bathroom, where I was throwing up all night. It felt like I was on an all night drunk... I know you are supposed to eat with this-I probably did not eat enough.

She takes 3 Methadone daily, plus Oxycontin to counter breakthrough pain. She is managed by a Pain Management doctor, and for her, this works. For me, I don't think I could take this much, or if so, it would have to be a tiny, tiny dose... She is in severe pain constantly. (The cause? I am not sure, but I suspect a link to implants which she does not want to have removed...)

Cathie

Jack
 

Have you tried
Abbot Nothwestern Hospital's pain clinic??
Sorry don't have Tele.No just told it was good.and in the Twin Cities area.
Better check with hmo as well.
Meditation helps with stress
Yoga as well,although i got myself tied up in what felt like a knot,thought i
thought i would never get out of it:D Take care Sue


For Yorkie mom,i was worried the storms got you!!!!
Have you ever been at the Department of Neurology,
Unviversity of Texas Southwestern Medical Center,Dallas Texas
If so what did you think??:hug: :hug: Sue How mamy Yorkies
do you have..When Bob can sit down we are thinking of getting 1

Methadone for Pain
 

Methadone comes in small (5mg) and up tablets. It is very strong, and very effective. If you take too large a dose, like anything, you WILL get sick. I started very low and slow under a Drs supervision.
I had very little constipation compared to fentynal or morphine or vicodin.
I had very little side effects at all. I didn't notice a buzz either like you get from vicodin or oxycontin. It didn't make me sleepy either, but I don't take large doses. I don't have to. 5mg every 6 hrs works great for pain reliel for me. I get a 3 mo. script every 3 mos. Nacho

Here's the Abbot Northwester's website. Has all information.

Here you go!!!!

http://www.abbottnorthwestern.com/ahs/anw.nsf/

Mel
 

Thanks Mel wanted to check it out myself . My youngest sons
sister-in-law got great help there..Only 30 years old came out
off work lateand bang fell down hit her head,just all over.She working part
time but my son said she can barly make it..She went to College for her
masters.Than bang down she goes,that's 2 young..We are getting more
storms tonight.


For Nacho: yes you can get it here but not in 3 month scripts I'm glad you
found something that works for you..

Jac hope you can get some help there!!!:grouphug: for all Sue

Nacho,
Thanks for your imput concerning Methadone, do you have to take any of the brain foods with it. ex Lyrica, neurotin, Cymbalta. Thanks

Thanks again
 

For all the support and suggestions. Today was about as bad as I've felt in a while. It is so weird how the days can be good to terrible. I know that I cut back on the Neurontin....just because it makes me so nervous when it is a seizure med. I'm so angry with my "neurologist" when he says to go ahead and take the Lyrica and the neurontin if it helps! Sure....just be a friggin lab rat!!! Because I haven't exhausted all attempts at pain control.....meditation...yoga....staying on neurontin and continue upping the dosage....2400 at night....plus 3 75mgs of lyrica a day....gp prescribing the neruontin...the neurologist the lyrica.....my head is whirling and my feet are burning and I just want a time out!!!

Jak
 

I know your fed up,and feel like a lab-rat,but i bet lab rats go through
a-lot worst,if they make it (poor critters) The last 3 days i have never
hurt so bad..Also i have been at this what seems like forever..
Because Neurontic is a seizure med,i don't remember ever havning a seizure,
I do however remember the dizziness..For me that's all i can speak for, i
am now on 3600 mgs.and if i miss it i know itttt..
1 What do fish say when they Hit a concrete Wall? Damm :)

2.What do you call cheese That isn't Yours?? Nacho Cheese (for
you Nacho)

I could go on but your suffering enough Jak..Please if we all got paid what a
Neuro Dr, did we would all be down in that Shack in Hawaii with our feet
in the water. All be next to each other yelling for our Umbrella..Come to
think of it forget the Neuro and the meds,bet you and Know Mel's Alan
would look great in a grass skirt...Ohhh a cure :hug: Sorry you feel bad,
hope it get's better,but i haven't found a quick fix.:( a little or i'll tell another
joke. Your in my or our thoughts . Sue

Methadone
 

is cheap, and effective but unpredictable.

It can stop your heart in one dose, if you have any genetic heart defects,
otherwise known as QT prolongation. It can be additive with tricyclic antidepressants, and some SSRIs...(it killed Anna Nicole Smiths son with this interaction, suddenly in one dose and it doesn't have to be a high one either).

All persons considering it should have an EKG before starting, and taking someone else's drug may be the last time you ever do that.

I have a post on Chronic Pain here with the details.

Please be careful, make sure your doctor knows the new data on this old drug, and have the EKG before starting it.

Alan has a question for Mrs. D (or anybody who knows the answer). I told him I bought the methyl B-12 today and he asked "can we get Dr. Fred to give us a B-12 shot every week?" I said "why not??" Isn't the B-12 shot made up of methylcobalimin????

We'll be getting the stuff from iherb via priority mail so we should get it in one or two days. Alan asked this question because we don't pay any co-pays for our doctor visits, and he's just a 10 minute bus ride from our house.

Do any of you go for B-12 shots because of your neuropathy?? And exactly how much Methyl B-12 is in a B-12 shot????

Thanks to anyone who knows.

By the way, my feet are on fire tonight, and so are Alan's. I used the Blue stuff and it didn't do a darn thing. Tomorrow I'll buy the bio-freeze.
The temperature went from in the 80's to the 40's in one day so I guess it's the barometer.

Melody

Methadone
 

As a probation officer, I have supervised many people struggling with addictions. I have one client who was a heroin addict. He comes into my office after getting his dose at the methadone clinic and I feel like I'm talking to a zombie. It is not a pretty site. If this is the exchange that he has made from heroin to methadone....I don't see it as a good thing.

I have to ask....
 

Which doctor is in charge of prescribing your medications? Does the other doc know you have been prescribed an alternate? It sounds as if theres a 'Who's on First' scenario going on here..I've been there, I'm STILL trying to get the 'group' in order? At least, in my case-but, to no ill-effect yet?

IS anyone DOC in CHARGE of your pain med aspects? One doc must and should be! Why? Because the s/e's of mix 'n match are not only dangerous, they can be disastrous...TOTALLY! This is not to scare you, just to alert you.
PROMISE ME that you will read each and every word of the following 'Prescribing Information' Sheets.Then, If you do not have questions, you arent' either paying attention to your possible well-being or your life, but you are really taking a gamble with the whole pain issue, and maybe other issues. The sites are for Neurontin and Lyrica - pay attention to the side effects AND the lesser side effects.. then look at the 'titration' or change from one to the other...It SHOULD be a very careful and deliberately SUPERVISED process from one to the other...From what you say ...it's looking as if YOU are the one trying to determine the degree for transitions.. Shouldn't be so....So READ these sites, If you don't have questions from reading these, either you've not really read them, or you are ignoring possible really bad consequences... I don't think I am the only one here who wants to help...but YOU have to see where such things COULD or ARE going wrong..It Could be the way the meds are being taken....So read, Ignore or whatever...

http://www.pfizer.com/pfizer/downloa..._neurontin.pdf
http://www.pfizer.com/pfizer/download/uspi_lyrica.pdf

Read Learn And Decide, If the meds haven't incapcitated you? This all is NOT the set of meds you can start and stop at will! Doing that can make it worse, far worse...mood changes, attitude changes, hi's-lo's are rampant in such 'uncontrolled' situations.. I believe YOU are too smart ...Call one doc or the other ....which ever you trust the most..and get it all BALANCED...Once it's all in some balance, then it's all down hill in the fine tuning!

I don't believe there is ONE person here who has not gone thru the pain and the med circus that you are going thru now...It IS a at times, almost a 3-ring circus in the way the whole diagnosis and treatment processs evolves... There is hope, but, you have to persist and be TOTALLY consistent in how you approach docs...IT CAN work, but if you up/down meds...only you lose? I have to admit, I've wanted to DO IT a couple of times myself, but, frankly I'm too chicken?

I hope this all helps - j

Oops, MrsD
 

"taking someone else's drug may be the last time you ever do that..."

MrsD: Guess I won't be doing that again... I have never taken anyone's drugs before, but this time, the reaction to the radioactive iodine was terrible... Our ER here is just great.... Choke Choke... If you go in and are in pain, they give you 2 Acetaminophen, unless you have a limb hanging on by a thread or a kidney stone they can see...

Mel, I take injectible B12 once a week. It is very inexpensive and I find that it helps a lot with pain. I take 1 ml, which contains 1000 mcg (micrograms). It is especially inexpensive if you can get a prescription and give the injections at home.

I used to get quite a bit of relief from the oral, but for some reason it does not do the trick as well, although I still take it, just in case. For a long time, not many doctors understood the connection between B12 and pain relief. Recently, I have had several ask me if that is why I am on it...

So, Jack, what about your addict? Will they try and wean him from heroin to Methadone and then something else? I can't imagine anyone wanting to be on this drug. How my friend takes this stuff and still drives is beyond me...

Cathie

P.S. MrsD
 

There is our MrsD always looking out for us. I should have known if I posted something outrageous, she would be looking over my shoulder... :) :) :)

Cathie

Jak
 

dalek that bothered me as well,so emailed my Neuro,she shoots back
no way would i agree to adding Lyrica..Well it's late,she thought it was for
me,i guess..Jak talk to the Dr. or Dr.s and read what dalek has posted.

Once again in the 70ths handing out court ordered M to H addicts well
it bothered me.I have to agree with Jak..

Yes please Nacho,no matter how small a dose,please have your heart
checked..And always have a up todate med list on you at all times.

I take shots of B12 1st a month take tabs. in between,that's just me.

I hope we all a pain free night and day tomrrow!! :grouphug: Sue

Check out that hospital,you really have a stressfull job ..j

naughty naughty...hehehehe..
 

but in reality it is not funny. There was a poster on OBT a while back who died the first day she was switched to methadone...she was on spinal forum.
The highest risk is for people using high dose opiates who are suddenly switched to high dose Methadone. But anyone can have a QT event. Best to have an EKG before starting therapy.

The data on methadone is NEW...it is the only opiate that does this, and many doctors are unaware. So I feel compelled to warn people. My post is in Chronic pain's forum Useful Websites... along with the links to the 4 classes of drugs that can interact with it and cause the heart to stop.

The B12, Mel, at the doctor's is cyano version, not methyl. It works for many, but requires conversion in the body to the active form. (some people fail in this)

You take the oral on an empty stomach for best results. Studies have shown the oral as effective as injectable. But it has to be used every day.

You can choose the way you want to go with it.;)

The B12 shots that I got from an allergist of all places was methylcobalamin. I gave myself the shots, difinitely said methylcobalamin on the label. I would ask the doctor which form it is and maybe ask for methylcobalamin. I didnt have to ask, it just was methylcobalamin.

When you give yourself a B-12 shot, does it use the same "short needle", that I use for giving my self an insulin shot every morning??

I give it to myself in the tummy. Is that where you would inject a B-12?? or does it go into the muscle, (like in the arm).

Every time I've ever gotten a B-12, it's been in my upper arm.

Thanks,

Melody

I dont have the needle in front of me but its about 1 inch long. I gave myself injections in the arm.

Jak
 

I reread everything 3 times,what wonderfull,loving,caring,helpful people
we have here at NeuroTalk !!:) You post, i look back and there are so
answers to not only what you need, but what i needed as well. :) How
very fortunate i feel.

My Drs., speaking for myself now family,Neuro and Endroconologist really
spend more time with me because of Liz.Janes lists,more questions i
normally ask thanks to you all.The time you save me and my computer
finger. Jak read it over, do only 3 things to start and while your doing
them eat one of Mel's good muffins.Glad i read it again Mel there they were
the great pictures. When Wing 42 a runner and backpakpacker to decrepit,
boy did i reelate. He found a rebuilder and once again found sleep.:) :)

Jo 55 the 5 stages,Mrsd who makes us stop and think,before we throw pills
pills down in handfulls Mel's Alan who never
gave up and now the mam is hoT Mel and her 100 lb weigh lost,Yorkiemom
who always said Jak where are you. dalek who remins us of what tests with
what meds. I interupted my son at board meeting found you a hospital in
area, Mel who found the website to it..

All of us venting amazing!!:D and like at the Ocars for those i may have
forgotten you know who you are,yes you do.From all this J. maybe no more
Marathons,But swimming,walking,Yoga,meditaton,my mon used to stand
against the wall flip over and stand on her head,i dance with my waker and
excersie with the help of a dining room chair,lite weights on good days,
my favorite stretching excerscises in the pool with good looking Pt holding
me up ( BALANCE PROBLEM) he he. Maassage ,vacations from stressfull
job rebuilder,read.Can you do all of this with PN not at once i wouldn't
think.

Hug or your wife love your children,you can vent here and give them a
break.J onlys remember to love yourself,and once again Phodiatrists suck
unless you have a ingrown toenails from dancing with your waker,and then
i'm not sure i trust them..:mad: :mad: Sue, keep coming back J it's done
me alot of good,so thanks to you

This is for Mel, guess what i got today???:D :D

Syringe...
 

No Mel, it is a different syringe. You are using an insulin syringe. These are not the same. Mine is a 23 gauge, 3 cc syringe, I want to say the needle is 1 inch long, but if you give it in the hip, you can use a 1 1/2 inch, if I remember correctly. This is so it goes into the muscle. In the upper leg, about half way between your hip attachment and knee, you can use a 1 inch.

By the way, someone here mentioned having problems w/B12 injections the other day, in that they could not draw up the med in the syringe. After questioning her, I realized that she was not shooting air (using the syringe) into the little bottle first. It has been a long time since I got a grade for doing this, but to the best of my recall, you wipe the top of the bottle w/alcohol on a sterile cotton swab. Pull back the plunger on the syringe to 1ml and shoot it into the little bottle. This will enable you to draw up the med... I like the little bottles best, because with the big ones, where you reuse the same bottle and a different syringe, there is always the chance of contamination. This can cause an infection...

Naughty Cathie

To Shiney Sue: I have no idea what you got today!!! Please tell me.

To Cathie: I think I'll stick with the methyl pills (as soon as they come in the mail (which should be by latest, tomorrow).

I didn't know to take them on an empty stomach though (thanks Mrs. D. for that piece of info).

Why is it best to take it on an empty stomach???

Thanks much. Melody

Dahlek
 

Gabapentin: The pharmacokinetic interactions of pregabalin and gabapentin were
investigated in 12 healthy subjects following concomitant single-dose administration of
100-mg pregabalin and 300-mg gabapentin and in 18 healthy subjects following
concomitant multiple-dose administration of 200-mg pregabalin every 8 hours and 400-
mg gabapentin every 8 hours. Gabapentin pharmacokinetics following single- and
multiple-dose administration were unaltered by pregabalin coadministration. The extent of pregabalin absorption was unaffected by gabapentin coadministration, although there was a small reduction in rate of absorption. That didn't concern me as much as all the hideous side-effects of both these seizure meds. I know now why I didn't want to read them again. In fact, if aspirin were developed today....they said the the FDA would ban its use! I just shudder at the fact that I've been on SSRI's for almost 15 years. I understand the benefits, but when you play with brain chemistry it does terrify me. Aside from splinting a leg, or putting a bandaid on a cut, there is much about medicine that is scary. We all have to remember that they are practicing medicine.Yes, I do, however, need to stick to one physician, but it is a little frightening that the gp can prescribe these types of meds, and the so-called world reknown neurologist didn't think twice about me mixing and matching. I think it is just apathy and it truly doesn't have any impact on them. Everytime you sign off on a script, it is providing the pharmacy with the protection of any complications that could occur...because "we" have written that off without an explanation. Just laziness on their part.

Mel...
 

I think I detect a slight amount of needle anxiety... :) :) :) Suggestion here. Get your doc's nurse to give one and see if there is any difference in the way you feel. It is not a bad injection at all. I hardly even feel it...

Cathie

That's the funniest thing I ever heard. Me, having needle anxiety??? Two months ago, Dr. Fred put a cortizone shot (the needle had to be 7 inches) into my shoulder. I just stood there laughing. He looked at me and said "don't be afraid'. I burst out laughing. He could not believe it.

THE ONLY THING I'M AFRAID OF IS THE DENTIST, I can assure you of that. The only needle I will never take is a novocaine injection. My phobia dentist uses THE WAND. Thank god for him!!! AND THE WAND!!!!

I had my latest dental cleaning last week. His dental hygienest told me that I have been taking excellent care of my teeth.

Nah, I'm not afraid of a B-12 shot. It's just that if the oral methyl pills work, then why not give it a try. I'll speak to Dr. Fred on my next visit.

IF he wants to give me a shot, or a prescription so I can give myself shots (and it's not too expensive) and if it works, I'll definitely go for it.

I wish that Alan could learn to give me a shot. I tried to show him how to give me a shot of insulin. He nearly killed me. He kept pressing the syringe into my arm. I said "what are you trying to do??? just press the plunger and it will inject the insulin and then you pull out the syringe.

Forget it. While I held the skin between my fingers (so he could give me the shot), he put in the needle and while he was depressing the plunger, he kept pushing the needle in.

I WILL NEVER LET THIS MAN COME NEAR ME AGAIN WITH A SYRINGE. He's dangerous!!!!!

jeez......

mel

I agree i'm sure the nurse would help and i don't think i ever remember
any pain.But i'm going to ask if i can take them sooner together.:)

Mel today the phone went ring,ring,i pick it up thinking my daughter
might be calling,she had fasle labor 2 days ago, :D Well a voice i never
heard,is this Mrs. So and So? Yes,and whome may i ask is calling?? Welll
i was wondering if you will be home in the next 20 mins,yes who is this
and why do you want to know,oh Plese Mrs so and so hmm it's a
nice surprise ,i promise you it will made you so happy..I yell Bob get
Your BASEBALL BAT wanted her to hear that before i agreed.

Oh we don't have a baseball bat,but i was the only thing i could thing of
at the time. I sat in my chair saying Bob what in the word,do you know
anything about a surprise?? No. Are you sure,yes Sue i want to know as
well.He's tall,all of a sudden he said here come a big truck in the driveway.
O h i want to see. No sit there,ding dong,knock knock get it Bob let me see
Sue please sit i did..Oh my children Bob let's the man in, he hands me a
Me a card,the card said this is a just because present, and please keep the
craftmatic bed. Well let me help you,no we were told for you to sit down
we will do everything.

They did, Bob told them were to move everything and the 3 men brought in
Temp-O-Pedic bed Oh dear sweet babies.They got it set up,boy signed,
I walked no walker down the hall.New ,Jersey sheets ,A beautiful Blue light
Compforter.I put my hand on it ohooo than i laid the compfoter back and
the top sheet got in that bed ahhhh!!!!Bob said i have to call the kids,those
pillows,Sue was out like a light. I got up a short time ago.tears you bet i
didn't hurt anywhere,and i didnot fall out of bed.Bob said Sue what's this
A topper for the hosptal bed..What a wonderfull day i told each and
everyone of them I don't know why you did this,but i will always love you
and the bed!! :grouphug: Sue Jak aid Temper-O-Pedic to the list
I just can't believe it.

Sue:

I must be dumb as a bat but I did not understand what you wrote.

Did you get a mattress topper? Or the whole temper pedic mattress?

Who bought it for you? And what about the craftmatic bed???

I'm confused.

Write back and be CLEAR, okay???

Melody

My Children
 

No no no your not dumb as a Bat. Wonder why they call bat's dumb
anyway,my husband ,the children and i went don't know how to sp.
you know crawling into caves.Mo. is famous for there caves.You wear
hard hats with lights on them, and irritate the bats. The cave exploring
starts with a S.

Ok my children got me a temp-peedic bed,sheets,comforter and a
a memory foam mattress toppping to take to the hosptal when needed.

After i talked to my son about the mattress toppers,remember he said
his store sold them and he told me to cancel order at Overstock.

Well i thought i hope he doesn't forget. I already paid a fortune for a
a Craftmatic bed that i couldn't sleep in.Welll the children love it as well
as there spouses.

Anyway my son calls them all and buy me the above.It was planned but
i sure didn't expect it and they really surprised me,Oh they got me the
Temp-pedic pillows as well..It was so sweet.I am a write me a poem,a
song type of person.This was a happy day.I really love it not only because
they got it for me,but because it feels so good and i can finally get
out of that lazy-boy chair, stretch out and sleep in that wonderfull bed,
i don't hurt when i get up,and when i sit up it's easy for me to get out
of it.

The best part was Bob new nothing about it,so when that lady called
i could not figure out if the poor woman was a nut job or what took me
by surprise,a very nice one..

Jack or any one else. I have a Adrenalin glandTumor the Drs. have been
watching.I kept saying what will happen if it has to come out.They give
me that look,don't worry it will have to get to 4 to 6, so need to worry!!
hear about it,yesterday got a call from the nurse, guess it;s time to
worry anyone ever has this problem, or know anything about it. Gosh
my mind went blank from fear. :( :( Sue

Spelunking!!!!!
 

Sue: Cave exploration is also known as Spelunking.

Wow, you went spelunking. How cool!!!!!

I'm glad you got the temper-pedic. You'll sleep great from now on.

Your children sound like angels.

I wish I had been so lucky!!!!

Take care, Melody

Jak and Sue, this seems to be a ....
 

'multi-issue' continuing story thread rite about now! Sure keeps things from being dull as dishwater tho, isn't it?

Sue, you first. Am I correct in that you got a real live Tempur-Pedic? If so, WOWSERS! I know of other severe PN-er's who swear by them. I'm just a topper person for now. Melody, Guys don't come in and do a 'set-up' for toppers, no way, no how.

JAK - Neurontin and Lyrica aren't 'mix and match' meds! Yes s/e's can be serious....but they can help you and lots of others get on with life with a heck less bunch of misery if used according to directions and IF YOU know what to look for in terms of the bad s/e's. Then YOU can work [or SHOULD work] with your doc[s] to get things to a TOLERABLE if not acceptable level. One should not start, stop, alternate, or vary doses of this stuff without explicit physician permission...Once you are on some meds [and while these aren't narcotics they are ...I believe neuro-tropics{? that term-have I got this right folks?} in that they take a while 3weeks to 3 months to effectively assert themselves into your 'systems' and then one's doc[s] 'tinker' with the dosages to get the most effect for the least dose and least s/e's. To suddenly go off a neuro med such as these can have as many bad s/e's as going cold turkey off of SSRI's...It's playing with fire and you already ARE on fire.

Why a med such as these works IN THE BRAIN to cut peripheral pain...well they don't know...but the chemistry of it all seems to indicate that better chemical reactions occur on the meds than not. [Believe me, I've read dozens of 'paper's on the subject & I've gotten that much and more out of it all...and I"M CHEMISTRY IMPAIRED!] BUT, as you said, "your pain is in your feet" WELL YOU are attached to IT, in your own way, as each of us is 'attached' to ours. None of us can escape it...it's learning about what all we can do about it..AND EACH OF US has to learn in our own way, at our own pace to know what options there are, so we CAN LIVE with it and make the best of a bad set of 'events'? For one thing, I REMIND my docs, when they get blithe about 'my pain' That I AM ATTACHED to it. It works?

It's sounding to me, at least, my take on your posts that YOU are dealing with many docs that aren't anywhere near on the same page? What I've done is keep a ONE PAGE MED HISTORY on/with me always...I give an updated copy to Each Doc I see, Each Time I see them! It contains Topic one: all my current and past important issues [from the CIDP, the Cancer, to cataract implant surgery a dozen years ago]; Then ALL NECESSARY Daily meds-identifying for which condition each is for; Next all the other stuff one gets prescribed but doesn't use on a perfect schedule; NEXT all my docs-what their specialties are and phone #'s. THAT WAY no doc can say I've not INFORMED THEM of what alls going on! Docs ask me silly questions I just say "on the list-Part 3" I point, and they go OH. Hey! Read THE LIST, then ask me pertinent questions, HUH?

As for mixing and matching meds...Yes it's scary, sometimes a real gamble, but, BUT, sometimes it takes just one more try to find the right combo? I've had some bad combos and good ones. The bad ones you should get a sense of by your second dose of that day...So what to you do? Call your doc, leave a message, and if it's that new, stop taking it and LET HIM KNOW. He is not going to know it's not working for YOU if you don't tell him, and tell him why.

Plain out, bribery, super-niceness to his key staff can also get you far...Bring donuts or brownies [even a guy can make a batch from a mix-doesn't require much effort and a paper plate wrapped to tote them in on..they'll be GONE before you leave the office. When you call what does staff recall? JAK-THE BROWNIE GUY! Gets you better treatment. I'm not proud this way at all! Brownies=Call back from staff within 1-2 days as opposed to nothing at all...Can't hurt, and people are people! I guess it's the difference between a carrot and a big stick? If you were the mule, which would YOU go for?

Last, you say you've been on SSRI's, Can I ask what for? Some conditions are really affected by the addition of Seizure meds, others totally not., If your docs aren't up to speed on this all, well, YOU are gonna have to be. I believe there are many on these boards who know lots more about anxiety, depression and ADHD or ADD issues than I, tho I've done lots of reading for a friend w/anxiety and ADD issues. The neuro world is a very complex one, respect that not all docs can know ALL about all neuro issues. It seems to be getting more complicated by the minute!

Well, enough, I hope you are now able to zero in on what all YOU need to do [IF you can break the brain-fog long enuf to do it] You've friends and family to help, don't be afraid to ask for help. In helping you they'll learn more and appreciate more about what YOU've been dealing with. :hug: - j

Amazing
 

I've been a regular on the old board, and I've never seen so many hits on one topic...course....on this thread we do have a bit of wondering here and there. I take Lexapro for depression. I couldn't live without it. I had a complete breakdown 15 years ago. I didn't have a clue what was wrong with me. I had panic attacks, anxiety.....agoraphobia. After counseling, and understanding the chemicals of the brain, and going from Paxil ( not good), Celexa (better), and currently Lexapro....this SSRI has allowed me to at least maintain a somewhat stable life while dealing with this rollercoaster pain. Yes....I have doctor hopped. Even my wife says that I need to stay with one doctor and work with him. I was/am taking neurontin for several months. I read about the improvement that can be had with Lyrica. My HMO wouldn't authorize it, but with the neuro writting authorization....stating that nothing else works.....I was able to purchase is for twice the co-payment. Yes, it is confusing. I have only had this pain for three years. I had neurologists telling me I had PN. I had podiatrists saying that I had Morton's Neuroma....I have a current neurologist saying that I also have restless leg syndrome. That....I do NOT have. This is insanity. Put up a dart board and throw a dart at the diagnosis. Injections in the back because of possible nerve impingement....physical therapy for the feet to strength the feet? It is mind-boggling. Psychotropic drugs are such an easy way out for physicians. I understand that there are much more serious neurological disorders. I'm biking in a MS 60/30 race in three weeks. I've been doing this for three years. I know that there is no panacea for this, and I probably will settle in for one of these seizure meds, after I see the neuro and the gp and compare notes. I will then follow through on the procedure that feels the most comfortable to me. Right now....I have to realize that the nerves cut out of my feet are no longer. I will have permanent numbness the rest of my life. The burning, aching, feeling is what I hope to control.

Mel,
Thanks Speluking that would of kept me up all night.
Yes they are Angles
You are lucky you have Alan in that topper!!;) Sue

dahlek,
Wowsers indeed,i really need that sleep,
You did a wonderfull job explaining the whole thing to
Jak i copied it down.Thanks again:) :) Sue

Plese copy it down as well :) :) Sue

Hey Jack!
 

Wandering in this thread? Surely you jest...:)

Try this diagnosis:

Doctor Neurojerk to Cathie: Well, Cathie, My opinion is that you hurt because you are ANXIOUS.... This little pill will help you sleep better and I am sure your pain will improve... Patting patient on head...

Cathie to Dr. Neurojerk: ANXIOUS??? ANXIOUS to get out of here (before I call you by the name I am thinking or smack the crap out of you...) Grrr...

Naughty Cathie

Jak
 

Now i'm getting it will reply when more awake in the morning,glad you
are hanging in there, time to listen to you, Sue