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Neuropathy: Facts and Fiction

By Dave R.

May 3, 2013

Internet links shown in these posts are designed to provide more detailed information if required.

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'Why am I being given antidepressants for my neuropathy?'

That's a very good question and one which every neuropathy patient should ask their doctor. Almost as far back as the Second World War, there has been an accepted course of treatment for neuropathy and there are roughly 10 drugs which can be tried until something works (or doesn't).

  • You start with 'normal' analgesics, most of which you can buy over the counter
  • Then you move on to anti-depressants (either Selective Serotonin Reuptake Inhibitors (SSRIs) or Serotonin Norepinephrine Reuptake Inhibitors (SNRIs)). Those names may not mean much to you but the most common antidepressants used for nerve problems are amitriptyline and nortriptyline (Aventyl, Pamelor), which were originally developed to treat depression. In theory these can reduce pain by interfering with chemical processes in the brain and spinal cord. In the second group of antidepressants (SNRIs) you will often see duloxetine (Cymbalta) prescribed but there are others in both groups. The problem is the potential for side effects (nausea, drowsiness, dizziness, constipation and lack of appetite) and many people find these worse than the neuropathy symptoms themselves.
  • If the anti-depressants haven't worked or been effective enough (and unfortunately this is true for most neuropathy patients) then you will probably be moved on to anti-convulsants, or anti-seizure medications (drugs meant for epilepsy). These include; gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) but once again, the side effects can be a big problem. These drugs work on the sodium channels and neural signals in the brain and spinal cord. If you're having problems with a drug, don't keep going because you don't want to complain; discuss it with your doctor. By the way, Pfizer, the makers of Lyrica, have withdrawn their own promotion of the drug for diabetes and HIV-related neuropathy because a) it has been proved to be largely ineffective and b) they were being confronted with more and more court cases thanks to the side effects. When a major drug company withdraws positive advice for its own money-spinner, you should take note, despite what your doctor may say.
  • If the anti-convulsants haven't worked then your doctor may well ask you to try a number of other treatments before moving on to the serious stuff. These include lidocaine patches, capsaicin patches (based on chili pepper extracts); various supplements such as Acetyl-L-Carnitine and Alpha Lipoic Acid (there are many more) and even yoga, acupuncture and courses of exercise. Even marijuana is being recognised as being an effective neuropathic pain suppressor (depending on the laws of your area). These treatments should also not be taken lightly however, especially the patches, which the FDA hasn't approved and can cause painful burning if not applied properly.
  • Finally, if all else has failed, you may be put onto drugs from the opioid family such as Tramadol, Oxycontin, Tapentadol and morphine. The previous question above talks about how these should be approached and it cannot be overstated that you need help both beginning these drugs and coming off them if you need to. Constant monitoring of progress is essential to avoid addiction and unnecessary suffering from side effects. Your doctor should do this but if possible, get your specialist to double check; you should never be allowed to plot your own course through opioids. They will however, work if used properly but remember, if your pain is much less, it doesn't mean that your neuropathy is being cured, it just means that the symptoms are being suppressed by the drugs.

'I'm at the end of my tether. I've tried everything and nothing takes the pain away completely. What can I do?'

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I wish that I could offer you more than platitudes but at this moment in time, the drug companies are working very hard to develop new treatments for neuropathy. They have finally woken up and recognised the scale of the problem and have realised that using drugs meant for other diseases is like putting a plaster onto a severe injury; it can only be a temporary and unsatisfactory solution. Furthermore, they have realised that finding effective treatments for neuropathy will be a huge money-spinner and without being cynical, that's their bottom line. Consequently, extensive research is being done at molecular, cellular and even at DNA level to discover how nerve pain actually works and what can be done about it. The bad news is that it will be some years before anything gets onto the chemists' shelves and is available for most patients. Quite rightly, all new treatments have to go through assessment procedures, trials and approval from medical authorities before they can be deemed safe for the public. It's frustrating but better that than serious mistakes.

In the meantime, if all the accepted treatments have failed, you do unfortunately have to learn to live with neuropathy, and the way it's affecting your life, in the best way you can; but you're not alone and there are many strategies which you can try to relieve your symptoms. Following the links below will provide you with lots of information to do just that. What you need to remember is that everybody reacts differently to current neuropathy treatments; what may work for one will not work for another. You need to plough your way through the minefield until you find a single drug, or combination of drugs, supplements and alternative treatments that will help you.

If, despite all your best efforts, like the questioner above, you're still plagued by almost unbearable symptoms, you need to get support from your specialists, your doctors, your families and your friends. You may not look ill from the outside but you need to convince people that you have a serious problem and that occasionally you need a listening ear, or a hug or a good chat to unburden yourself. You may be surprised; people may not be able to feel your pain but they can be amazingly empathetic at times. Neuropathy support groups and forums may help fill in the gaps.

Further information (there are many more sites -- just Google and see)

The Neuropathy Association

NeuroTalk

Neuropathy and HIV

Beat Neuropathy

NeuropathyTreatment.com

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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