PHN Survival Skills
Posted , 47 users are following.
Having deal with PHN now for 7 years it still is important to me to share information with others that are afflicted by this terrible condition or with others that suffer from chronic pain. Important because it is reassuring is to hear how others are impacted and trying to cope in their lives. It is terrible to constantly have to turn down or cancel social engagements because you cannot bare the pain, are so distracted that you can't focus on a coversation or do an activity that you enjoyed before. You get tired of responding to people "how do you feel" "how is it going" and many times you dont look that bad. One doctor said PHN is like the pain of cancer but without the relief of death. Not looking for sympathy from others but it is tough on family and friends given they dont really understand. I tell people now best the pain of a stinging nestle and worst is like a bad burn/scalding and rubbing sandpaper on it. People also dont understand (as I dont as well) why it strikes when it does. Everyday for me - but usually later in day after I have had to much irritation from the clothes. I want to say thank you to a number of people on this site for giving me my sanity back.
thanks
jim
9 likes, 132 replies
cathy007 jim66082
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francoise34476 jim66082
Edited
Thanks and take care.
Gaida jim66082
Edited
I have had PHN for 5 and 1/2 years. I have improved and somedays are better than others, but I experience pain everyday, especially after I get up in the morning, after a nap or when I go to bed. I can now take showers and have reduced meds. Currently on Gabapentin, and use ldocaine almost every day. I try not to take Tramadol, but when I can no longer stand it, I do. Unfortunately I have taken it 5 or 6 times this week.Perhaps it is worse this week because I worked in the garden. It often is worse after exercise. Am still trying to figure this out. There is one thing that helps me, and this is why I am writing. Pressure relieves the pain-I have PHN on my right side. I at first tied ace bandages around myself. It was ridiculous to get it on or out of but helped. Then I tried the back braces that can be purchased at a home improvement store. I cut off the shoulder straps. At this moment I have 2 of them around my midriff, and another wide band one from the pharmacy around my breasts. They give me relief, and I use the large one on top of the others and it acts as a bra. Sometimes when the pain is so great at night that I can't fall asleep I wear one to bed. Might not be good for circulation, but it helps me overcome the pain.
Good luck to all.
bonnie2828 Gaida
Posted
How are you doing? Do you still use the compression bands to relieve the pain? How often? Im only in my 8th month and I cant fathom enduring this for 5 1/2 years. I wish you the best.
jim66082
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After begging two specialists to propertly apply the liquid nitrogen to the area - and actually getting "doused" with it I am finding relief. Given the large application the liquid nitrogen burned my skin - however previous applications were so minimal I was not getting any relief. The research paper was very clear about dose and procedure so I had my dermatologists up the amount greatly. They were concerned about cosmetic appearance - I am only concerned about pain. It took 3 weeks for the pain to subside from the "burned" as in frostbitten skin however the allodynia from the PHN has been reduced!!!!! First time in 7 years I can have bed sheets touch me. I am going to Europe onvacation for 3 weeks but when I come back I will have another 6 rounds of treatment. The Dr in Paraguay swears by her methods in helping people afflicted by PHN allodynia pain. I can't give you a link but if you search for the words Calandria cryoanalgesia and PHN you will find the paper. jim
Yossimic jim66082
Posted
So happy for your good news!
I contacted Dr Calandria a few months ago, and she has passed me a contact of a Dr in NY who does the same, I will be bringing my father from overseas to try the treatment.
Could you share more details from your experience? Where did you get treatment? How many treatments did it take before you felt an improvement? What was the frequency of the treatments you had?
Thank you!
jim66082 Yossimic
Posted
I can finally have bed sheets and duvets touch me at nigh!!!! Dr Calandria has been a godsend - she has written to me and even sent me a video of the application procedure so one can see the intensity. I have had to go to two different dermatologists. Neither read the paper nor had the right equipment. It is basically the canister they use for warts etc with a nozzle that regulates the spray. They kept delivering the dose too minimally and I ended up showing them the video and asking - well demanding that the application rate be increased. If it isn't high enough there is no benefit. If too high the skin gets burned from the freezing which I was more than willing to tolerate. They were also concerned about skin blemishes - when one has agonizing pain the least one worries about. I had 6 treatments that were at more or less the right dose in my mind. The benefit is rapidly noticeable but for me the burning of the skin required sometime to heal so that pain was gone. I am planning to have some additional treatments given there is still some residual allodynia - but the pain levels are not what they use to be - i am not tearing my upper clothing off and being in agony. The doctors tend not to believe in the method given the biolgical plausibility is not apparent. However I believe it works. good luck. any quesitons please contact me. jim
croft4Penny jim66082
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Yossimic jim66082
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That is great to hear, gives us some hope.
Would you be able to forward me the video Dr Calandria had sent you?
Would be so helpful!
Could you also let me know what was the frequency of the treatment you had? 6 treatments in a span of 2 weeks? 1 month?
Thank you very much Jim! Glad you are better!
Yossimic croft4Penny
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The Dr in NY is Dr Karen Burke.
Good luck!
croft4Penny Yossimic
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Yossimic croft4Penny
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Yossimic croft4Penny
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I wanted to see how your treatments went with Dr Burke, did you have any improvement? What were the costs?
Thanks!
Yossimic jim66082
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I wanted to see how your treatments are going, did the improvement continue? What were the costs of each treatment?
Thanks!
croft4Penny Yossimic
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Unfortunately, the treatments did not help me and I've stopped going to her.
Yossimic croft4Penny
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Can you share some details? I am taking my father there for treatments next week.
How many treatments did you have? How many times a week?
What was the cost?
Thank you
croft4Penny Yossimic
Posted
As many as 3 times a week for a couple of months. Cost was $135, not covered by anything. I think she is an excellent doctor. It just didn't help me. Your father may react entirrely differently.
My neurologist raised the issue that ahe is just treating the surface, but the underlying issue is within the nerve cells. Just mentioning this. I'm no expert.
Yossimic croft4Penny
Posted
I read that it helps many people, Jim here in the forum was treated and it helped him, so hopefully it will help my father as well.
I really wish you find another treatment that helps you, will keep you posted if I hear on anything new.
Have a good weekend, all the best.
jim66082 Yossimic
Posted
Sorry - for some reason i have not been getting notifications from this site. The treatments helped signficantly - although no real biological underlying mechanisms that can be explained. However the pain started to creep back up after a few months so I am having the procedure repeated. jim
Yossimic jim66082
Posted
My father tried these treatments in NY, at first they helped a bit, later on not as much. Still looking for new treatments. Have you or anyone you know tried Cryoneurolysis? Freezing of the nerve.
Thanks for sharing the info, hope you are well.
Yossi.