English Dave and everyone: Help please for Tactile allodynia bad and spreading
 

I have been in so much nerve pain !! I can 't find a place for myself!!

My allodynia is spreading and it's driving me crazy !! It feels like bees stinging my body and it's overwhelming! My patience is running thin because of this pain!!!!

I tried to search but I have a hard time even concentrating.

I am on 20mgs ketamine 3xday,and my dr. is going up slowly, 4.5 mgs naltrexone 3- 5mgs valium a day and compound cream of capsaisin and marcaine.

PLEASE could any of you kind people tell me what else you have taken or done besides the ketamine and what else I am on, that has helped this allodynia bee stinging pain?

Thank you from the bottom of my heart
I would so greatly appreciate it...:hug:

I have nothing to offer you by way of suggestions but do want to let you know you are in my thoughts, pain is cruel, invasive and consuming. I hope you can find some relief soon. :hug:

Hi vintagewine,

I am so sorry to read this. When our whole Nervous System goes into overdrive and the slightest touch burns, there is no comfort and relief is very difficult to achieve. The best we can hope for from meds is that things get dialed down for a short time.

I do think your Dr is being very conservative in the rate s/he is upping your dose of Ketamine. I take 30-60mg 4 times a day and can modify the dose as needed. I usually take 60mg at night to give more pain relief for additional sleep.

Above and beyond Ketamine, and responsible for 50% of my pain management are the Lidocaine Infusions I have every 4 weeks. Without these I would not be able to function at all, with them, for 2-3 weeks after, the Ketamine, Tramadol and side effects from Topiramate keep me off the ledge. Even with all this the pain is never below 4-5, burning and needle stabbing - yes, like bee stings.

I suppose, over the years, when you have a cocktail of treatments that helps somewhat, you then become more tolerant of the pains, hardened against it. This year I have lost the ability to Meditate due to my neck and arm and that loss has reduced my tolerance. I am waiting to find that balance again.

Hang in there. Keep pushing for new treatments. Search for that elusive mix, just never give up.

Dave.

Some people just cannot tolerate capsaicin (hot pepper) in creams. You may be one of those.

Try to get another formula. There is some research that clonidine in compounded creams works quite well on nerve pain.

Oh, thanks MrsD, I did not pick up the capsaicin cream with my eyes.

I had to stop using it for the arthritis in my hands, knees and back when the Hypersensitivity got out of control. Now I cannot tolerate any pepper/chilli based spices in food, it makes the burning worse.

Dave.

Same for me, Dave. Nightshade veggies, include peppers, but also tomatoes, and potatoes can cause burning too, if you are sensitive.

I am so sorry to hear you are worsening! I second Mrs D on getting away from the capsaicin. It initially causes the cells to spill all of their Substance P which is an inflammatory cytokine. Though it eventually de-functionalizes cutaneous nerves it takes levels of application that many can't tolerate. Also, If you have been taking warm baths or showers to feel better that will make the capsaicin effect worse.

I can't remember what meds you tried but sometimes it takes a cocktail as you know. Gabapentin in addition to other meds is often more effective than gabapentin alone.

I ended up trying three different topical compounds before finding the one I like. Go for something else for sure.

I hope you get relief soon! Sending healing love,
:hug:

Hi everyone,

Thank you all so very much for your kind replies and your welcome suggestions.

My heart and prayers go out to all of you and to all those that suffer with chronic pain. Chronic pain is so overwhelming and draining at the same time !!


Hi Mrs. D... Thank you for your suggestion of putting the clonodine in the compound cream. Do you know if it may help taking it orally for this allodynia pain?


I will talk to my doctor about the capsaisin and clonodine. I tried Neurontin but it did nothing for my bee stinging pain.

Hi Littlepaw... What medications are in your compound cream please?

Hi Dave... My doctor has suggested lidocaine infusion to me. I opted out for now because I read that it can cause severe cardiac problems. What is your experience and opinion on this please?

Thanks again for all of your help :hug:
Vintagewine

Oral clonidine carries alot of side effects. It is predominately a
blood pressure lowering pill. The effects on chronic pain were learned many years after the patent expired.

It is not commonly used orally anymore because of its side effect profile.

example:
http://www.ncbi.nlm.nih.gov/pubmed/22683276

You might have to call a compounding pharmacy for the
dose ranges to use however...because some doctors don't know about this new application for the drug.

Hi vintagewine,

From what I have been told by my Drs the cardiac risk is during the Infusion itself when it is run too fast for your particular circumstances. I have had one occasion, when I was having a lot of chest pains, of numb(er) mouth and lips and pains during Infusion out of over 100 lots. The Nurses just stopped the Infusion for 10 minutes and I was fine.

I had a heart attack in '08 and have Coronary Ischaemia and Microvascular Disease. I have been passed clear by my Cardiologist to have the Infusions. Even after my heart attack I only had a couple of months off while I waited for appts to get the All Clear and start again.

Even with my heart problems, I have no worries about Lidocaine Infusions on that level, I believe I am probably at greater risk exerting myself crossing the road to the Bank.

Then, if you factor in the benefit I feel, actually being able to bear daily life to some extent, the Infusions plus Ketamine are worth the tiny risk.

Dave.