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-   -   I *think* it's PN...how 'bout you? (https://www.neurotalk.org/peripheral-neuropathy/17770-pn-bout.html)

Brian 04-19-2007 01:08 AM

Brian do you think neurotin has any effects on b-12 or any b vits..or has anyone buillt up a tolerance to high levels 3600 of the neurotin that is.

Sue, I think our bodies can & do build up a tolerance for pain meds, 3,600 mg is a heavy dose, but i am sure the initial dosage was much much lower and was tilted up slowly as the body become tolerant to the drug more was needed and on and on.
I know through my own personal experiences with Tramadol SR, there were a lot of times when i felt it wasn't working as good as is should, but i thought it was me becoming tolerant to that drug, so i done the reverse & cut the dosage down for a week or so [ wasn't a great week either :) ], then i would go back up to the normal dosage again and it worked every time, but thats me only.
I have no idea about Neurotin affecting Vitamin B, Rose or Mrs D may be able to help you on that one.
all the best
Brian :)

Hurty 04-19-2007 01:09 AM

You guys can't even imagine the joy over reading your responses! I'll take some information from you folks for me to further investigate over the nothingness I have until my next appt any time.

I had normal ranges also for TSH and Free Thyroxine (I can't remember if I mentioned that before...didn't realise I had posted mammoth posts...urg! so sorry).

I do (and have been for years) taking a multi vitamin daily (with 125% of the daily guideline. I know those values are open for interpretation though). Where the heck does all that B12 I'm taking go?! I read about the B12 deficiency stuff here just a bit earlier. Quite fascinating. Why wouldn't these things be more front burner with the med community?!!?

Same stupid story for me...2 AM and I can't fall asleep. So, sure the sleep problem has a lot to do with it but its also running thoughts in my head about how to approach next Dr's appt, what the heck work is gonna pull next to try to not pay the Short Term Dis., my 1 Yr wedding anniv is next month and I'm trying to think about what the heck I can do that's special when I have the activity level of a slug in the shade, piles of laundry....

<sigh>

I guess a plus is I've become somewhat of an expert on RLS from thinking it was what I had the last two years!

The neurontin was only for maybe a month...it was also almost 2 years ago (I think it was the first thing neuro tried for RLS). Can't remember the dose unfortunately. It was the beginning of the <INSERT NAME HERE WHEN DIAGNOSED> odyssey and I didn't even think it would be useful to track it! Of course, I remember the dose of everything I take now!

That's of course a separate feather in my craw (craw?! it is craw right? in fact, I'm not even sure what a craw is.) is that the neuro specifically photocopied every prescription she gave me to keep for her records and yet they weren't in the copy I just requested and got.

Warning, warning!! Girl problem coming...

Oh, and I think I forgot to mention even though I've been on the pill for 6 years, over the past 6 or 7 months it has dwindled to now being completely non existent. No chance of being pregnant unless God decided to intervene with immaculate conception.

shiney sue 04-19-2007 04:49 AM

Well falling alseep at the computer in the afternoon,hitting ones head on it to finally wake up could be the reason i sleep very little at night:confused: First off all i'm happy your happy here as well hurty:)
Brian thank you for your response that is why i'm happy here!!!:) I can remember my grandmother getting b12 shots forever,then Drs. said noo bad for you,bad for you maybe never for me:mad: she got her way and stayed on them..I went on them around 1965 and let some nitwit Dr. talk me out of them;) not as stong as grandma no i wasn't..I'm 60 years old and that what goes around comes around thing it right in so many ways even in the world of medicine..My family Dr. said Sue guess what there is this wonderfull new scpit it's for Omega 3,what i think yes ,but in 60's and 70's it was and still is a great Supplement for me,the new scpit is very costly..
Know about that dirty cloths thing as well,rasied 3great kids, now all grown,all married and all over the U.S,but they each and everyone knows how to wash clothes:) Yes keep coming back and keep posting look forward to hearing your updates...My Neuro Dr. sent me here and do i like her yes,yes,do i expect a cure someday yes but at times on bad days,not soon enough:D there my big goofy smile..Many blessings to all Sue

dahlek 04-19-2007 06:00 AM

A few 'hints' to help you keep track
 
First off, call and ask your insurance company for Copies of your Medical claims history, and if you get your meds thru them for that as well. These can help you keep track of who you went to WHEN, and what meds you've had. That in turn can trigger your memory as to what worked, and who to see to get copies of your medical file at any docs' offices. This stuff should be FREE.

Then contact in writing the docs' offices and ask for a copy of your records. Some offices charge per page, so depending on the charges [some such as hospitals are OUTRAGEOUS] decide what you want copies of, Tests, scans-MRI-CT-Xrays often have summaries and those you'd want.

For both of these you have to sign release forms. In some cases it's just GOT to be on their own office form. Also you may have to go in person to any given office to PRESENT ID, either when you give them the release or when picking up the info...

Once you have all that stuff you can start w/LizaJane's worksheets...work your way thru them all and you will see a roadmap begin to appear...Of, what's been done, what hasn't in that 'process' of diagnostic elimination.

That all can help you and in the end help your docs about possible ways to go for testing. I don't bring the worksheets to the docs but I always have a 'What About X Test?' question at each and every visit.

Keeping track is important as you can never ever remember all that's gone on the the 'diagnostic process' - one I think is very similar to being put into a food processor- on 'PULSE'.

Enuf for now, I think others can be more concise about the "B"'s issues.

Keep pushing, asking, and maybe you'll not only get help, but answers! - j

rose 04-19-2007 05:31 PM

Neurontin and B12, and why so many doctors are decades behind
 
Neurontin can interfere with absorption, but that is easy to take care of just in case.

I do hope you will do some reading at my site. It isn't a whole lot, and among other things it will tell you why most docs are so behind and why 125 mcg B12is useless for those with severe malabsorption.

rose

Yorkiemom 04-23-2007 12:23 AM

To "Hurty"
 
Quote: Oh, and I think I forgot to mention even though I've been on the pill for 6 years, over the past 6 or 7 months it has dwindled to now being completely non existent. No chance of being pregnant unless God decided to intervene with immaculate conception.

Well, if that happened it would certainly give an altogether new meaning to "Baby on Board." Unless I missed a posting, I don't think we have had a baby on this board yet... :) :) :)

I am a little old for that sort of thing, so will leave this discussion to those of you who are younger and in superb condition-mentally and physically... A little practice perhaps, but years past my prime, even the phrase, "blue dipstick" still strikes fear deep into my heart... :)

Got to go, before I totally hijack Hurty's thread... :)
Cathie

MelodyL 04-23-2007 10:13 AM

H Hurty!!! Happy Upcoming Anniversary!!!
 
Oh, I just remembered, my 27th wedding anniversary is coming up on May 5th I just yelled over to Alan "How long are we married now?" and he said 27 years. Jeez, talk about senior moments.

I totally understand the tiredness, the not "being too frisky" when you "don't feel like being frisky". I may be almost 60 but I did have my moments.

But when you don't feel good, and you have pain, and are tired all the time, (especially when you don't get a good night's sleep, and I don't care what the reason a person is not sleeping, IF YOU'RE NOT SLEEPING, YOU'RE NOT SLEEPING!!, I mean, who feels frisky???

How do I now get to sleep? If I could afford it, or my insurance paid for it, I would take an Ambien. I will never forget the first time I took an ambien when it first came on the market.

I was never a sleeper. And when you have children problems,like we did with our son, well, who the hell slept anymore? You lie in bed, and YOU THINK, your mind races, WELL, YOU DON'T SLEEP!!!. So my doctor prescribed Ambien. I had never taken a sleeping pill in my life.

Well, I drifted off to la la land and I slept 8 hours straight. I HAD NEVER, IN ALL MY LIFE, SLEPT 8 HOURS STRAIGHT,......EVER....

When I next saw my doctor I remember telling him "Let me tell you something, do you know what a gift you gave me." He just smiled.

We need to sleep. Plain and simple. Sure, we all get up to go to the bathroom during the night. But I go right back to sleep. Oh, I forgot to tell you what I do take to sleep. After I could not afford ambien, my doctor had samples of Lunesta. IT DID ABSOLUTELY NOTHING FOR ME!!!!

So (I guess I'm neurotic, or anxious, or whatever, considering what we went through with our son, and my doctor said "Melody, try Alprazolam, take a small amount before bedtime and it will relax you".

Well, I did and it works. I never take it during the day. You can throw anything you want at me during the daytime, and I'll deal with it. But I need to get my sleep at night.

The doctor said it's better than valium because valium stays in your system longer, or something like that. I used to take flurazepam (but that stays in your system and I was too tired the next day).

Alan takes alprazolam also, or he WOULD NEVER GO TO SLEEP BECAUSE OF THE PINS AND NEEDLES BETWEEN SOME OF HIS TOES when he lies down!!

So we both have the same prescription. We go to drugstore.com and you can get 120 pills for $14 and change. If I went to the local pharmacy, I'd pay $30 for 30 pills. That's ridiculous. Now I know that Alprazolam (which is actually xanax), well you have to be careful with it. And I am. And my doctor trusts the both of us, that we won't abuse this drug.

I know people that take ativan, xanax and trazadone (all in the same day). But I don't do that and I don't need to do that.

Thankfully, all I need is a small amount of alprazolam and in 15 minutes, I go to sleep. I mean, really?? what am I supposed to do, just lie in bed and think about my son all night long??? No, I refuse to be a martyr.

I host my own asperger forum, I come on these boards, I educate myself. And godwilling, some day, I may be able to put my head down on a pillow and drift off. But with my nervous sytem, the way it works, I really don't think so.

But if I can ever get ambien cr or plain ambien and my insurance covers it, I would take it in a minute (as my sleep aid).

So I wish you peaceful nights and pain-free days!!!!

I hope you have a nice supporting hubby and I hope you do something sweet for your anniversary.

Alan and I always go to the Japanese restaurant around the corner (we go for lunch because it's half the price of dinner and you get practically the same meal). so for $8.95 each, we have a nice mid-day meal.

All the best,

Melody

shiney sue 04-23-2007 02:20 PM

Rose
 
Hi,

Just went over your website once again.My Grandmother would just pass
out,once she was on a ladder,she was putting shingles on the roof of her
house passed out and fell off the ladder. Finally after this fall the one Dr. in
town started giving her B12 shots with iron,what a difference!!


The town grew more Drs.and the towns wise old Dr. passed away.New Dr.
awww your just wasting your money it's all nonsence.Wrong thing to say to
Grandmother all she knew is what her body needed.I've said it before,but
will repeat it again..Dr. you will give me the shot are i will knock you on your
Fanny,she got them.

I wish i would of listened because i fell for that nonsence business and
stopped:( But i take it now after a very wise Dr. said the same things
although you are a wonder (thank you)..Between Lizza Janes workup sheets
and your websit,and all the great advice on Neurotalk we just might cure
ourselves!!!:grouphug: to all of you.

Sue , Grandmother also belived in massage,she lived to be 90 plus!!!

rose 04-23-2007 02:37 PM

Some people do pass out, not many I've spoken with.
 
Good for Grandma! And you!

rose


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