Re: Pain Management Appt

[Guest guest]

Nilo, my son please read Amy's email....

To Amy,

My son is on Gabapentin for more than 2 years, 300mg 3-4 times a day.  His

neuropathic pain increased so he decided to increase it to 1800mg/day. He

started to use a cane; had difficulty to go up & down the stairs, unable to walk

his dog, etc.  I cautioned him re: its side effects, esp. the tremors in his

hands.  I got a prescription from a British-Canadian Dr. friend re: Lyrica

(which is the same as Gabapentin) though he says it's stronger & new for this

pain. I talked to a Fil-Canadian friend doctor.  I suggested a trial of Tylenol

#1 which I'm familiar (as a nurse) since I give this to my elderly residents

with neuropathic pain.  I was surprised, since this is the 2nd day he has been

taking Tylenol #1 in conjuction with his regular dose of Gabapentin.  He said he

has less pain; is able to do his chores & walked to the park without the cane,We

are still going tomorrow to see the Locum doctor, who is working for his family

dr. who is on holidays for more than a month. He needs to get a referral letter

from this doctor, so he can see his neurologist (had not seen her for 2 years).

I'll ask from the latter whether he should continue w/ Gabapentin or start with

Lyrica?  He has an appointment re: sleep apnea.  The nurse working for the

neurologist said, he might have to seek help re: pain management?I hope that

something would help you to reduce your pain.

Sincerely,

TE

[Guest guest]

Amy:

You need to do two things... 1)go to a different pain doctor, and 2)

open your mind.

Pedigree... nobody has it worse with pain than I do. I had undiagnosed

pain until I was 33 years old, when I began with amatriptyline. I

changed to nortriptyline because I could not stand the side effects.

But wait, I began smoking pot when I was 15, and voila, my pain went

away, even though I could not articulate it, and my grades went from

c-d to A-B, where they stayed, all the way through to graduate school

in a foreign country, the Netherlands, where marijuana is legal (yes

legal don't argue with me here), and where I was the valedictorian of

my class.

I have had two pain doctors I liked and one I did not in three cities

and two countries. All have helped greatly, however.

I take nortriptyline, neurontin, and fentanyl in a patch, which I

recommend, and up until 3 months ago, oxycontin as well.

At Cedars-Sinai in LA, my pain doctor and I raised the level of the

patch intake ad removed the oxycontin... and now, after 10 years of

adjustments, I have my pain under control.

I know it's maddening, but you have to keep working with people on the

amount and the timing of your medications.

For example, I found that I suffered from one of the more rare side

effects of nortriptyline, sleep disturbances like sleep apnea. But

this is a very effective pain signal disruptor, and it is crucial.

Through working with all my doctors and mentioning everything to all

of them, my GP in Amsterdam looked up the drug in the manual,

discovered the side effect, and we spread out the daily dose, so it no

longer produces thew sleep disruption. My nortriptyline use pattern is

not the norm.

Same with neurontin. It was suggested that I try neurontin as the next

step after nortriptyline. With the first pain doctor, I got a big slug

of it at once... it produced severe headache. Bt the next pain doctor,

instead of increasing the patch, which is what I asked for, he

insisted I try neurontin first.

Remembering the headache, and being in the pain I was still in, I sent

my GP, who would not increase my patch past a given level, as she had

already done it twice, and she felt she was running out of expertise,a

nasty email saying I had asked for help and I got torture

instead. Of course I apologized very shortly thereafter, and the

neurontin began to work.

It was being slowly ramped up, and it has now become an important part

of my pain control regimen...which also includes yoga, coffee, pleant

of sleep, and sex.

Nortriptyline is converted to norepinephrine, and caffeine is also

responsible for helping norepinephrine levels.

Yoga has given tremendous increases in strength, balance,

coordination, and proprioception as measured by a physical therapist.

This has lessened the pain levels as well, or at least the perception

of it.

And for me at least, the hormones and neurotransmitters released

during sex and orgasm are effective at fighting the pain. And lack of

sufficient sleep exacerbates pain levels pretty fast.

I was able to get rid of oxycontin 3 months ago, using a larger patch

and more neurontin... as well as the yoga. Reducing physical and

mental stress also works to reduce pain.

And the cannabis, or marijuana, works... very well. I don't have any

idea what type of pain yours is, but if it is neuropathic pain, or

pain from damaged nerves, marijuana has to be considered. If you have

accompanying gastrointestinal problems, it should also be considered.

There is a whole cannabis extract which should be becoming available

in the USA in the next few years which can take the place of ordinary

smoked marijuana. The current THC-only pill is only partially

effective and best for getting a good buzz on.

Marijuana is uniquely suited to combating this kind of pain, and it

was sufficient until 1996, when the progression of my CMT-x surpassed

its ability alone, although it remains in smoked and liquefied forms a

major part of my pain control regimen. Every doctor has been fully

informed and on-board with the cannabis use.

Unfortunately I had to go to another country to avoid being one of the

10 million arrested for marijuana use since leaving for graduate

school in 1993. Things in some places like here in California, have

improved.

So you have to be willing to look at this stuff with an open mind.

These doctors are not magicians, and you get the care you demand. It

is not easy to hear, but it is true.

So I feel justified in saying what I have how I have, because I have

suffered with the pain, I have suffered the ill-capacity and arrogance

of some doctors, and I have benefited enormously from the majority of

them.

Don't let one guy, or one set of results, or the umpteenth failure get

you down. It may take you years to find what works for you.

I'm sorry, but that is our burden to bear.

Yours,

[Guest guest]

Hi Amy,

I'm sorry to hear your appt went so poorly.

Depending on the type of pain you have, you may be able to get 'spot

treatments', like injections in your back or joints.  I recently had one in my

hip and it helped a lot with the severe nerve pain in my lower leg (apparently

associated with my hip replacement).  Also, I take a very low dose of methadone

that helps me with nerve pain more than the neurontin.  It can be addictive too

though.

I know you had a bad experience with this guy, who didn't respect your time, but

not all doctors are the same.  For some of my doctors, I have a long wait.  For

others, including my pain guy, it's just a couple of minutes.  My doc didn't

know anything about CMT either on my first visit, but he did learn about it by

my next visit.  So...doctors can be very different...and sometimes it might take

a couple of tries to find a good one.  If you decide to try again, maybe you can

get some info from the receptionist before scheduling an appt, like how long the

typical wait time is for a patient to see the doctor and if the doctor has any

CMT patients currently.  This might save you some time if he/she isn't the right

doc for you.  Also, you may want to take a copy of your records with you if you

do go, since there are a lot of challenges with getting timely records sent from

one office to another, even when they agree to do that for you.  It's been

my experience that a new doctor's office is quite happy to make a copy of my

file, rather than try to track down information from my other physicians.

Just some thoughts.  It's not easy and the pain issue can be very frustrating. 

So sorry you are having this difficulty.

[Guest guest]

Amy,

 

I would be suspect of any " comprehensive " plan, also.  I tried biofeedback

several years ago for migraines.  I got good at it in the doctor's office, but

it was a different story outside of the office.  I also tried acupuncture, which

did nothing for the pain, but I seriously felt very relaxed lying there with

needles stuck all over my head.  I really enjoyed the sensation while there, but

it didn't carry over to outside the office.  I am blessed in that I don't have

pain - I had some when my symptoms began, but not any longer.  I wish I knew of

a non-addictive drug you could take.  I do believe in anti-depressants, having

taken them for years.

 

Good luck!

 

[Guest guest]

Amy,

A few more thoughts. While I don't know your level of pain or it's

type, Vitamin E has proved successful for pain, also perhaps Naproxen

may help or naturals like Kava Kava, 5-HTP, Valerian, GABA, and L-

Theanine. Below is an abstract about Genistein. ~ Gretchen

GENISTEIN, A NATURAL PHYTOESTROGEN FROM SOY, RELIEVES NEUROPATHIC

PAIN FOLLOWING CHRONIC CONSTRICTION SCIATIC NERVE INJURY IN MICE:

ANTI-INFLAMMATORY AND ANTIOXIDANT ACTIVITY.

Valsecchi AE, Franchi S, Panerai AE, Sacerdote P, Trovato AE,

Colleoni M.

Department of Pharmacology, Chemotherapy and Medical Toxicology,

University of Milan, Via Vanvitelli 32, 20129 Milano, Italy. August

2008

There is great interest in soy isoflavones as alternatives to

endogenous estrogens not only in hormonal pathologies, but also in

inflammatory, neurodegenerative diseases and pain. We investigated

the effect of the isoflavone genistein on neuropathic pain.

Genistein binds estrogen receptors (ER) with higher affinity for the

ERbeta particularly expressed in neuronal and immune cells.

Neuropathy was induced in mice by means of chronic sciatic nerve

constriction, and the subcutaneous administration of genistein from

the third day after the lesion reversed pain hypersensitivity in a

time- and dose-dependent manner.

This effect may have been due to the activation of classical nuclear

receptor and/or anti-oxidant, anti-inflammatory and immunomodulating

properties of genistein. The fact that a specific ERbeta antagonist

prevented both its anti-allodynic and anti-hyperalgesic action,

whereas a specific ERalpha antagonist was ineffective and a non-

selective ER antagonist only reversed the anti-allodynic effect,

suggests the involvement of ERbeta.

Antioxidant effects are also involved as the anti-nociceptive dose

reversed the increase in reactive oxygen species and malondialdehyde

in injured paw tissues, and increased the activity of anti-oxidant

enzymes. The phytoestrogen had immunomodulatory and anti-inflammatory

activities as it reduced peripheral and central nuclear factor-small

ka, Cyrillicappa B, nitric oxide system and pro-inflammatory cytokine

over-activation.

Taken together, our results suggest that genistein could ameliorate

painful neuropathy by multiple mechanisms.

--- In , " amyhodgepodge " <amyhodgepodge@...>

wrote:

>

> I had my first (and last) appointment with a " Pain Management

Specialist " today. I was

> looking forward to this, as I know many of you have had luck going

this route.

>

> Two unimpressive things: Had me wait 1 hour and 10 minutes to see

him and spent a

> grand total of 15 minutes with me. Secondly, his staff failed to

retrieve my medical records

> from my referring physician (the one I am spending $5K/year

to " retain " ), so he had no

> clue as to what my history was, CMT, etc. When he asked me to stand

on my toes/heels, I

> am sure I looked at him like he was crazy. I told him that I can no

longer do this due to

> CMT, and he looked at me like I was joking...seriously.

>

> My issue:

>

> I need off tramadol. I can't get off tramadol because I am in pain

and I am addicted to

> tramadol. Tramadol can have some pretty serious side effects, but

the one that I am trying

> to " treat " is a complete lack of libido. Tramadol has decreased my

testosterone levels,

> which we suspect has led to this libido issue. I have tried

testosterone creams, and this has

> not helped.

>

> I won't take Neuontin due to the traumatic withdrawal that I

experienced. Can't take Lyrica

> because it makes me crazy. Don't want to take anti-depressants like

Cymbalta. Don't

> really want to take any drug, which I know makes the " drug

dispensers " of the world crazy.

>

> So, he mentioned that I might really benefit from

their " comprehensive program " which I

> know very little about but he mentioned that I would be meeting

with a Dr. ,

> who happens to be a " Pain Psychologist " (no thanks) and that it

would involve

> " biofeedback " ...don't know much about it, but this is probably

another " no thanks " .

>

> Is there nothing new out there that might help alleviate my

neuropathic pain? I would be

> willing to take a drug if there were no sexual side effects. I am

not interested in going to a

> regular appointment...I have two small children at home and want to

spend my time with

> them. I am frankly sick and tired of doctors visits. I am not

interested in being

> " psychoanalyzed " ...I already know I am crazy:) Ha!

>

> Any feedback? Ideas?

>

> Thanks!

>

> Amy

>

[Guest guest]

Thanks for all of the great responses and unique ideas that might help me with

my issue with neuropathic pain and lack of libido.

Gretchen- I am definitely going to study up on this soy issue. I have been

avoiding soy altogether as my body ecologist thinks that it is terrible for you

and basically clogs up your whole digestive system. That is interesting that a

component of it has shown to be effective in treating mice with pain.

- Your post was especially interesting:) I like your pain reduction

regimen...yoga, sleep, coffee, but minus the sex part:) Haven't thought about

marijuana, but I have heard that it helps some people with chronic conditions.

ly, don't see the difference between it and some of the legal drugs with

all of the " unknowns " .

As always, thankful for the advice.

Amy Hodge