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-   -   Med not working. Desperate please advise (https://www.neurotalk.org/peripheral-neuropathy/218431-med-desperate-please-advise.html)

canagirl 04-06-2015 07:16 AM

Med not working. Desperate please advise
 
Hello

My pain in excruciating. It's literally everywhere . Most horrific burning and stinging ever. Plus just pain that travels on lines from back to scalp, arms and legs. Started nortryptiline 3 days ago and having zero relif. Pain worse than ever. I can't do anything but resting is worse. What med should I try next. I need something fast... I can't handle this. Really and truly I will not be able to handle this much linger.

Also, how would u know if ur sensory nerves were severed ? Or maybe not severed but almost severed?

en bloc 04-06-2015 07:44 AM

Neurontin is a good option. But it takes a little time. You have to start at a low dose, and work your way up over many days and weeks. But it has a good success rate for these types of symptoms.

Have you tried the OTC Biofreeze for the burning?

The skin biopsy would detect whether the small fibers have been damaged. Part of the test is to examine the condition of the fibers...including segmented fibers and those with swellings or other signs of damage.

mrsD 04-06-2015 08:05 AM

Tricyclics can take a month to 6 weeks to work. They are very
slow.

canagirl 04-06-2015 10:20 AM

The doc and pharmacist said that for nerve pain it should give me relief in a couple days but that of depression it takes weeks. Is this true or have people found that it does take some time even for nerve damage . Also, what seems to be the effective dosage for nerve damage pain relief ? I've seen people say 10mg but it's doing nihing and neuro said keep going up till I got to 40. I haven't heard of people taking this much before except for depression where I know it goes higher

janieg 04-06-2015 10:52 AM

Many people here have reported getting great relief with cannabis.

There are lots of articles to read:

https://www.google.com/search?q=cann...m=122&ie=UTF-8


___________

groucho 04-06-2015 10:57 AM

Quote:

Originally Posted by canagirl (Post 1133986)
The doc and pharmacist said that for nerve pain it should give me relief in a couple days but that of depression it takes weeks. Is this true or have people found that it does take some time even for nerve damage . Also, what seems to be the effective dosage for nerve damage pain relief ? I've seen people say 10mg but it's doing nihing and neuro said keep going up till I got to 40. I haven't heard of people taking this much before except for depression where I know it goes higher

I take 50mg daily and have a friend who takes 60mg. My neurologist says he's got people taking 150mg daily, for pain, which is at an antidepressant level. I found the benefit for me reached maximum at 2 months, but you should find some in a few days. At any rate, it sounds like you'll likely need more than 10mg.

MikeK 04-06-2015 11:32 AM

I'm in the process of going off of Lyrica and going back to Nuerotin (Gralise). I really never gave Lyrica credit for what it does for pain relief, I can really feel it now.

What I know is you really don't feel the relief these drugs provide until you miss a dose or change.

mrsD 04-06-2015 11:52 AM

The way tricyclics work is in the brain, where they tweak serotonin receptors to ignore pain signals.

So the sedation does come right away, but the real actions take weeks to manifest. The drug has to get to the centers necessary and thru the blood brain barrier, both situations that take time.

Nortriptyline and amitriptyline both show potential for peripheral nerve improvement by affecting nerve growth factors. This is also a slow process.

Healthgirl 04-06-2015 12:30 PM

Quote:

Originally Posted by mrsD (Post 1134008)
The way tricyclics work is in the brain, where they tweak serotonin receptors to ignore pain signals.

So the sedation does come right away, but the real actions take weeks to manifest. The drug has to get to the centers necessary and thru the blood brain barrier, both situations that take time.

Nortriptyline and amitriptyline both show potential for peripheral nerve improvement by affecting nerve growth factors. This is also a slow process.

How could they affect nerve growth factors? Do you mean for nerve damage that occurred already vs ongoing attack from autoimmune cause?

mrsD 04-06-2015 12:34 PM

Yes, I'll find the paper (again).... it has been posted here many times.

It is relatively new information.

http://psychcentral.com/news/2009/06...tors/6761.html

Nortriptyline is the active metabolite of amitriptyline.

Healthgirl 04-07-2015 07:11 AM

Quote:

Originally Posted by mrsD (Post 1134017)
Yes, I'll find the paper (again).... it has been posted here many times.

It is relatively new information.

http://psychcentral.com/news/2009/06...tors/6761.html

Nortriptyline is the active metabolite of amitriptyline.

Wow! Thanks Mrs. D. This is first time I've heard this. I had one neuromuscular doc want me to take Nortryptyline but I was terrified to try it. The next doc agreed with me that I am definitely going to have side effects due to the way I've reacted to other drugs. Right now I am not taking anything regularly. I tried Lyrica for 3 weeks but stopped because it wasn't helping for the pain and I think it might have been depressing me.
My current rheumatologist (have only been to her once) want to try me on Plaquenil because of the "equivocal/ indicative of Sjogren's biopsy", and I'm terrified of that too.

I have also read a report on Plaquenil claiming that it doesn't work any better than placebo.

http://www.2minutemedicine.com/no-be...-joquer-trial/

This report is talking about the fatigue, dryness and typical Sjogrens symptoms but not about neuropathy that has spread throughout the body so I'm trying to find more info on that.

mrsD 04-07-2015 07:51 AM

Nortriptyline is the least of the evils you mention in your post.

I think you should try it and see what happens.

It might make the "dryness" worse, but maybe not.

Do you take a multivitamin daily? One with retinol A in it (not just betacarotene?

Some people don't convert betacarotene well. Mostly those with hypothyroidism. But low T3 conversion also would do this. Betacarotene from food is converted in the liver when thyroid is normal.

Dry skin and mucous membranes may be due to low Vitamin A.

I have been reading about some seniors becoming low in A... it is a new topic being discussed on some sites. It appears that it can be a hidden deficiency.
If you want to try this use no more than 8000IU of Vit A daily for a couple of months and see what happens. I got mine at Target... their brand.
You could also use it in a cod liver oil capsule. But just take one, and don't increase doses...as it can be toxic if abused.

This intervention is taking down my "lupus like" redness on my arms I've had for years!

Healthgirl 04-07-2015 08:25 AM

Quote:

Originally Posted by mrsD (Post 1134179)
Nortriptyline is the least of the evils you mention in your post.

I think you should try it and see what happens.

It might make the "dryness" worse, but maybe not.

Do you take a multivitamin daily? One with retinol A in it (not just betacarotene?

Some people don't convert betacarotene well. Mostly those with hypothyroidism. But low T3 conversion also would do this. Betacarotene from food is converted in the liver when thyroid is normal.

Dry skin and mucous membranes may be due to low Vitamin A.

I have been reading about some seniors becoming low in A... it is a new topic being discussed on some sites. It appears that it can be a hidden deficiency.
If you want to try this use no more than 8000IU of Vit A daily for a couple of months and see what happens. I got mine at Target... their brand.
You could also use it in a cod liver oil capsule. But just take one, and don't increase doses...as it can be toxic if abused.

This intervention is taking down my "lupus like" redness on my arms I've had for years!

I do take a Carlson cod liver oil a few times a week. Maybe I should increase.

I still have a big bag of pills from when the doctors were prescribing one thing after the other.

I tried Cymbalta for one night and it kept me up all night and caused severe diarrhea.
I tried Baclofen for the spasms for a few days and it did nothing but make me more agitated.
I tried Neurontin for a week and it made me tired and miserable and did nothing for pain.
Flexeril made my already too low blood pressure so bad that I passed out and didn't even touch the spasms.
Zanaflex same thing.
Tramadol makes me feel like I had too much caffeine and does nothing for the pain. I tried it 3 times.

I am able to tolerate 1/2 valium with 1/2 oxycodone but only take them when I absolutely can't deal with the pain. If I take it, I am able to break the spasms and reset for a while so that I can cope by meditating and moving carefully. I get through most days with out taking anything but my quality of life is pretty crappy.


I called the pharmacist on an excruciatingly painful day and asked him what was the lesser evil between Nortrypyline and gabapentil/ Lyrica and he said for sure Nortryptyline was worse, so that was why I gave Lyrica a try.

mrsD 04-07-2015 08:41 AM

Many people here over the years have used nortriptyline successfully.

If you have the 50mg tramadol...try 1/2 tablet. That works for me when I am having a rare flare. If you only have the ER...well, you can't cut those. I find 1/2 lasts me more than 24 hrs. I must be a slow metabolizer.

I would still try the nortriptyline... there will be some sedation at first, so take it at night. But that goes away quickly. I used a tricyclic for a year (doxepin) for a severe sciatica attack. It worked well, and helped me continue working. I used a low dose only.

The diarrhea from Cymbalta is due to the serotonin overload in the GI tract. Some people cannot tolerate SSRI or SNRI drugs for this reason. The tricyclics are much more gentle.

groucho 04-07-2015 09:48 AM

I found Tramadol would sometimes give good pain relief and other times it didn't seem to do much for me. I read a tip someplace from an older person's patient review awhile back, and that Tramadol needs to be taken with a full glass of water. That was the secret to taking the med, but he didn't say why, so I didn't know if it just prevented stomach discomfort, or what. But since I started taking my Tramadol with a minimum of 6-8oz of water, I've had good pain relief with it every time. It surely won't hurt to try the tip. Good luck.

mrsD 04-07-2015 10:29 AM

Tramadol is a protodrug...it has to be metabolized by the liver to its active form before it works on pain. Some people lack the enzymes to do this and so for those people tramadol is not a good pain reliever.

I tend to get nausea from it....about 2hrs after taking it. If a long period goes by and I don't use any, the nausea comes. But if I use it once or twice a month, or daily (like I had to on vacation when my back went out), I don't have any side effects from it.
I only use it once a day at night. My first dose was a whole 50mg and that was tough. I think tramadol is very different for each person.

One should always take a good amount of water with any medication. Some can burn the eosphagus or stomach if they just sit there with little or no fluid to dissolve them.

madisongrrl 04-07-2015 08:36 PM

Quote:

Originally Posted by Healthgirl (Post 1134184)
I tried Neurontin for a week and it made me tired and miserable and did nothing for pain.

I had the same problem with Neurontin/Gabapentin, but after a few weeks I actually adapted. I combined a small dose of nortryptline with the 2400 mg of gabapentin and it has been very helpful. I do get a bit of a mouth dryness with nortryptiline so I try to take in extra fluids.

I feel like I've read some literature on effectiveness combining drugs (particularly nortryptline and gabapentin) at low levels instead of taking just one drug at a higher level. Perhaps someone can chime in...


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