In that case, why not skip the first two and just go for the gold?

Doc

Hi David
Thanks for all the information you have provided. I suffer from Idopathic SFN. I had a "comprehensive" blood workup by Neurologists (5) and Rheumatologists (2). I have ALL of the symptoms of SFN except for numbness. I was diagnosed in August of 2012 by Skin Biopsy. I am otherwise fit and healthy. Still going on my tread mill. My symptoms started out-of-the -blue with burning under my feet and tingling in both calves. It has since progressed to my arms , hands, torso , and face. I mentioned bloodwork to the Doctors about autoimmune related neuropathies, and Lymes Disease. Each time they tell me all my bloodwork is normal and dismiss me as Idopathic. I take 300 mgs of Lyrica and its not helping . I get bad buzzing , pins & needles, burning all over. It has become widespread. Now I have developed bad tinnitus (ringing in my ears and head) Never had this before! Did you have any of these symptoms. Does this sound like anything familiar to you? Why did it take eight years for your diagnose? I dont remember ever getting bit by a tick at home or elsewhere. I Never had any symptoms or a bullseye rash. Did you know you were bitten by a tick. I wish I could find a cause for this horrible SFN. Should I ask my Neurologist to do futher testing. Everytime I ask they say my tests were "normal" Thanks again ..
Marie in NY

[QUOTE=Dr. Smith;1018727]In that case, why not skip the first two and just go for the gold?


Hi Doc
Does the Amitriptyline your taking help with neuropathic pain? Or do you take it only for sleeping and depression?
I take 300 mgs of Lyrica for SFN , it doesn't do much (as far as I know), I still have bad pain and unpleasant symptoms. My Neurologist recently added 10 mgs. of Amitriptyline. I started very slowly taking 5 mgs (split pill), so far it helps me to sleep. I'm hoping I will get some pain relief with only 10 mgs like you. I do get some "angina-like" pains in my chest and arm, but my cardiologist said it was ok for me to take it. (I have micro-vascular angina, its the tiny vessels that constrict and cause me pain, my large arteries are clear). I'm a bit concerned (alto the Doc said it was OK) about increasing it (Ami) , due to "heart -related" problems I've often read about. Do you get skipped beats on Ami? I hope this note finds you well. Thanks
Marie

Hi Marie,

I do not take amitriptyline for depression; this dose (10 mg) is allegedly too low for that anyway (I think any change in my mood is due simply to getting better/more sleep).

How to Take Elavil (Amitriptyline) for Chronic Back Pain

I couldn't say for sure that it's helping any neuropathic pain because 1.) I'm asleep while it's working, and 2.) my burning pain from PN is alleviated entirely by taking RLA (100 mg) daily.

As I mentioned in post #8 ADDENDUM, I tolerate this dose of amitriptyline very well—with no side effects whatsoever.

If you haven't discussed it with your doctors already, you might ask/suggest them about switching from Lyrica (pregabalin) & Elavil (amitriptyline) to gabapentin & nortriptyline.

Study finds that the combination gabapentin plus nortriptyline reduces neuropathic pain more than either drug alone

I believe (not certain) that this may be the referenced study:

Nortriptyline and gabapentin, alone and in combination for neuropathic pain: a double-blind, randomised controlled crossover trial.
Nortriptyline is a 2nd generation tricyclic antidepressant, while amitriptyline is 1st generation. As such, nortriptyline is generally better tolerated with a lower side effect profile.

I looked briefly for any similar study using Lyrica and amitriptyline, but did not find any (doesn't mean there isn't one—I just didn't find any).

Hope this helps, & Best Wishes,

Doc

Interesting. Both my GP and neuro are still "fans" of amitriptyline. It's and oldie, and has been well studied. As an anti-depressant, it is just as effective as the newer medication, but apparently it's less used now because it's hard to treat (deliberate) overdoses.

I did try it for the pain and built up from 10mg to 50mg over a period of five weeks (as prescribed). I do not recall any side effects, but it also didn't help the PN (which was the reason I took it) so I went back down to 0 in 5 weeks, again with no ill effects.

I must say I'm a very good sleeper (for which I am very thankful, it's a life saver), but I can immediately see why sleeping better could make you feel less "grumpy".

As for Lyme, it shows again that medicine can have a strong regional component. For me, it was the absolute first thing they tested (both ELISA and WB), as Lyme is very common where I live; however, move 50km to any direction, and they probably wouldn't even think about Lyme.

Both tests were negative, and as I had come clean about my alcohol abuse, they didn't look any further (and they were probably right. )

This is actually the 2nd or 3rd time it's been prescribed; once for pain (didn't work), once for depression (side effects intolerable at those levels) and now for sleeping. As I've mentioned, my PN pain is addressed mostly via RLA, and since I'm asleep after taking it, I can't say if it's helping any pain now. It makes me drowsy, I sleep better, and haven't noticed any tolerance, but taking only "as-needed" a few times/week.

I asked about Lyme, but it was ruled out—never been tic-food that I'm aware.

I've never had any abuse issues. "There's a time and place for everything, and it's called, 'college'" was about it. I was never a big drinker—maybe a sixpack a week, and just quit entirely when my health issues began—just didn't make sense, and I didn't want to self-medicate. It wasn't any big deal for me. I quit coffee for a few years too, and I missed that more than beer. Coffee won, but I've been able to stick to no more than 2 cups/day. I can deal/live with that.

Doc

Nortriptyline is the active metabolite of amitriptyline.
Therefore they are the same therapeutically.

Amitriptyline came first, then when it was discovered, Nortriptyline came later.

http://en.wikipedia.org/wiki/Nortriptyline

We have some other drugs today, which are active metabolites of the parent drug.
Allegra is the metabolite of Seldane (which was taken off the market for long QT risk ..heart arrhythmias.)
Clarinex is the metabolite of Claritin (antihistamines).

Elavil (amitriptyline) remains less expensive than nortriptyline and is often offered first. It has been on the market much longer than nortriptyline. So doctors remember it first. Pamelor came along just before SSRIs and therefore was not a big seller for depression. The timing was bad for it. But it was promoted as an adjunct treatment for ADHD children. It gained some bad press for long QT syndrome, and some children given too high of doses died of cardiac arrest. The treatment of ADHD never included Elavil... however. So I guess doctors just think Elavil is better, but it is not really....it is just older. Elavil was used as an antidepressant for a very long time. The chemistry of drug metabolites was not elucidated until more recent years because the technology wasn't yet in place. Today some papers claim that nortriptyline has fewer side effects, and that is why it gets prescribed for pain which is still "off label" BTW.

Both Elavil and Pamelor affect QT of the heart. But in the doses used for neuropathic chronic pain, this is unlikely, unless one is taking other drugs with it to potentiate this effect or if one has genetic long QT syndrome. Very low electrolytes --low potassium and low magnesium can also be additive for long QT.

One other thing, Elavil has potential to alter blood sugars, mostly by raising them. I had to stop a trial of this last year in fact. So diabetics and pre-diabetics should test themselves to see if they get this effect.
It does not happen for everyone, just some. In fact for some it may lower blood sugar readings. Strange but true, and wasn't understood until recently:
http://www.drugs.com/amitriptyline.html

Big Pharma has been using this type of technology more often.
In the case of Nexium vs Prilosec...it reached levels of fraud.
This Wiki article explains:
http://en.wikipedia.org/wiki/Esomeprazole

Hello Marie:

Imagine that ... someone in New York State getting a mysterious neuropathy who is otherwise in good health.


Let me guess ... could it be Lyme!


OK, Marie, the first step is not to panic, but you need to follow the sequence of testing steps that I posted earlier NOW! The reason we do not go to the new culture test immediately is because it costs $595.00 for the basic test, and then another $300.00 to determine which Borielia (Lyme) strain you have.

Do the Lyme ELISA in your doctor's office first. The cost is negligable and if it is positive you have Lyme. Anyone that you live with also needs to be tested.

If it is negative, I think that I would skip the Western Blot and go right to the culture. There is a very specific sequence of steps that you need to follow to have your blood sample processed correctly that you can read on Advanced Lab's website, but don't worry about that now.

However, I just remembered that Advanced Labs is being blocked from offering the culture in New York State due to political pressure.

That is the one and ONLY state (with of course the most infected and undiagnosed victims) where the test is currently being blocked. This is not a problem, however, as you can have your blood drawn by a doctor in any neighboring state.

The reason for this embargo is that the majority of residents of New York State are now infected, and for ten million people to suddenly find that out all at once via an indisputable blood culture they have Lyme would lead to chaos. Also, only about 30% of folks who are bitten by a tick and get Lyme ever see a rash!


That said ...


I experenced my onset of small-fiber neuropathy exactly as you described. Early in the disease it can impact the Cranial, Trigeminial, and Auditory nerves, which is likely what you are experencing with your tinnitus but which will resolve with treatment.

In the meantime I suggest the following (subject to approval by your doctor) ...



1) Take 10,000 mcg of oral Methyl B-12 every day on both an empty stomach, and at least 30-minutes before eating for proper absorbation.


2) Take 100 mg morning and night (200 mg total) of "Doctors Best" brand R-Lipoic Acid with food (to avoid stomach upset). This will help you in many different ways.


3) Take two tablets each day of "Mag-Tab" SR , which is a specially-formulated type of magnesium that is absorbed. Lyme will deplete your body's supply of magnesium, as it utilizes magnesium to survive. The buzzing you describe are actually muscle and nerve faculations and a classical Lyme symptom (and no, you don't have ALS!!). Two "MAG-TAB SR" daily will bring your buzzing to an end after a few weeks, as the MAG-TAG replenishes your magnesium supply.


4) Take lots of purified fish oil daily


5) Take a good multiple vitamin daily



OK, for pain I would recommend a combination of Cymbalta and Lyrica as follows (and again subject to your doctor's approval):



1) Begin taking Cymbalta at a dose of 30mg once per day at bedtime for seven days to taper up, and then raise that dose to 60mg once daily at bedtime on the eighth day if you had no problems during the taper-up period.


2) I am not sure how you were taking your 300mg of Lyrica, but I would suggest that on the same day you begin the 30mg of Cymbalta you do the following:


Take 75mg of Lyrica at bedtime at the same time you take the Cymbalta 30mg, and then take 50mg of Lyrica with lunch (total 125mg Lyrica per day to start). There is a powerful synergistic effect when combined with Cymbalta which works!


Then, on the 8th night when you increase your Cymbalta dose to 60mg, evaluate how you feel. If there has been no change, increase your mid-day Lyrica dose the next day to 75mg from 50mg, for a total of 150mg per day.

Now maintain the status quo for two more weeks, at which point the Cymbalta will really start to do its thing in conjunction with the Lyrica.

If your pain is greatly decreased, then we will want to slowly start reducing your mid-day Lyrica dosing back down to 50mg from 75mg to avoid drowsiness, while maintaining Cymbalta 60 mg per day for the foreseeable future.



In the meantime you need to get tested. I would bet that you have Lyme and probably Bartonella as well.

Feel better and keep us posted!

David

... I was surprised that your doctor's looked at Lyme first, until I noticed that you were in Europe, where it is not being covered-up as it is here!

Also I'd like to add for Marie....

Improving magnesium status may improve your heart symptoms.

Magnesium opens blood vessels for better circulation.

The dosing for Elavil and nortriptyline is low and in low dose is less likely to cause a QT event. However, low magnesium is one trigger even for people who do not have long QT syndrome.

I would hope your doctor evaluates your electrocardiograms for this problem before giving Elavil or any other drug with long QT potential. (some SSRIs are problematic... like Celexa).

Here is a link to a recent article about antidepressants and QT risk:
http://www.healio.com/cardiology/arr...ng-qt-interval