No research on Post Herpetic Neuralgia

Brain and nerves
1

I have looke all over the net and spoken with alll my doctors. No one knows of any research being done on this desease. There is a clinical trial on a timed release Garbapentin, but that't not getting at the root (pardon the pun) cause. I can't figure this out, since the desease effects so many people. There has to be some mony in it for some company.

 

2

Welll I am getting no help with my pain and no good medical advice.  Yes i would be nice to have a medicine to help us.

3

Hi Penny:

I think most of the money is going to promoting the vaccine.  I have seen some research on topical agents and emailed the university researchers but got no response.  Thre is also a ketamine infusion combined with a coma state that is being used on select patients.  Unfort for most of us there isn't much new.   jim

4

I have just started a topical with loperamide.  A small amount of the cream cost 600 bucks and formulated by a pharmacy.  I researched it and typically used for thermal allodynia (burn victims) vs mechanical allodynia from shingles.   I have just started the treatment and report back.  Something totally different and I hope it will help.   My drug plan does cover it thank God.

jim

5

There is also disturbing new research on the long term use of opiods for chronic pain conditions such as PHN.  Obviously opiods (like high dose fentanyl that I am on) mask the pain vs dealing with the cause.  Research (Google Scholar) is showing opiod induced hyperalgesia.  This means that users can get allodynia from use of the drugs and also have sensitivies to light and sound (as in pain) etc.  This is quite alarming for me given being treated with anti-pain meds that actually can cause the pain that is being treated. I have asked my doctor about ratcheting down the narcotic dose to see if the breakthrough pain is any different at lower doses.  Have been on fentanyl for 7 years.  

6

I'm sure you are right about the allocation of money. I keep kicking myself for passing that sign my pharmacist had advertising vaccine shots. I check on loperamide and it seems pretty serious stuff. Let us know if it is worth it.

 

7

I will not use opiods for PHN. As my neurologist says, "Better to suck it up."