Depression with PHN?
Posted , 28 users are following.
Anyone have depression with PHN? I'm a retired psychologist with 26 years of PHN in right eye, forehead and scalp. I have nothing to gain [not looking for patients, I'm retired after 40 years practice]. I have learned very helpful ways to manage depression and PHN, and have worked with many patients with chronic pain and depression. If interested, let me know. I hope I can point some people with this difficult condition in a helpful direction that will improve their lives.
1 like, 251 replies
SandyCruiser charlie58834
Posted
Haven't been here for a while so first of all, thank you to everyone who has responded. I was prescribed Lyrica 50 mg three times a day. Still had pain so dr upped dosage to 100 mg three times a day. Stayed on it for a number of weeks and basically either wanted to sleep, eat and watch tv. Managed things like going to the grocery store but there was no enjoyment in life. I'm a scrapbooker/card maker but have not been able to get back to it. Even the computer or reading hasn't interested me. Even on 100 mg. still have pain and the dr wanted to up dosage again a few weeks ago but I said no thank you. I have had enough of feeling the way I do, so last week made the decision to start easing back to original dosage. Cut the pm by 50 mg and did that for a few days, then a few days ago, cut down the morning dosage. Still taking 100 at bedtime. There might be a slight increase in pain but my head is certainly clearer, less sleeping thru the day and a bit of an increase in energy. I have been getting headaches which feel like my head is in a vise but hard to tell whether it is meds or the weather. I did buy Aspercreme but I am so hesitant about using any product in the armpit and breast area when there are so many glands present. Still have a numb armpit which aches most of the time and still experience those stabbing pains although the intensity isn't as strong. If I feel the same level of pain on the meds as off of them, then there is no sense in taking them. Will explore CBT. As always, appreciate support and understanding.
Caseysue SandyCruiser
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I had very similar experience with the Lyrica. When I got off Lyruca I went on Gabapentin. After awile the effect wore off. I use the Aspercreme with 4% Lidocaine. My area is from my navel to spine, but lower than your area. I am now inti my 9th year dealing with this. I worked with it, having retired a year ago. I have found what makes mine flare up and try to avoid it...not always possible. Wish I knew the magic fix..I do not want to live with fuzzy head. So that's why I got off the Gabapentin as well.
charlie58834 SandyCruiser
Posted
The aspercreme, being a topical creme, will put far less drug into your system ["glands"] than an oral med does. Most of it remains in the skin itself, which is where the nerves are. For that reason, and because of side effects such as drowsiness which occurs with most of the "nerve pain" meds like Lyrica and gabapentin, I've only used creams and gels over the past 26 years, no oral meds of any kind for PHN pain.
ruth57682 charlie58834
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Hi Charlie, I was on the forum off and on all year. It has now been a year and a month and three weeks since I have had PHN. I am starting to lose hope that this nitemare will ever end. Yes, I was so hopeful all spring that things were at least getting tolerable but with summer and hot, sticky weather, it seems worse than ever. I will like a prisoner in my home as I just can't tolerate clothing from the waist up. My pain is the worst on my back, underarm and chest. The skin sensitivity is horrible. I agree that nothing works. Tried pain pills, gabapentin. ( still on that butbam cutting back due to side effects. The only relief I find is temporary with creams. Has anyone that you know off had it go away after this long? Guess it's hard to know cause they probably aren't in this forum anymore!!. Not sure why I am writing but no one seems to understand this pain and I feel myself slipping into a depression. I have always tried to take your advice and believe me it had worked until now.
Caseysue ruth57682
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ruth57682 Caseysue
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Caseysue ruth57682
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I have always laid on one side, lucky for me my effected side is not the side I sleep on. I don't think the Drs. understand the pain and what it does to our life.
tiffany60896 ruth57682
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Hi Ruth,
Sorry you are feeling low. I had shingles in Nov 2016 and now have PHN. It's a constant battle to try to regain my life. I opted not to take prescription drugs because of my personal senstitivites and all the side effects as well as possible damage to my already compromised system.
There are alternatives to using strong medication that many of us on this forum have found like eating a healthy diet, sleeping a lot and learning ways to avoid stress. I truly believe anxiety makes the pain much worse so finding ways to control anxiety helps. Also, using relaxation techniques and seeing a therapist for talk therapy works to lessen pain.
Focussing on positive thoughts is difficult and some days are harder than others, but trying to believe you will someday feel better can go a long way in healing. Maybe this pain we have will last forever, but it will lessen over time. You may not notice the pain is getting a bit better, but it usually does. It just takes a very long time. In the meantime, try to live your life doing things that make you smile as often as you can. Good luck.
Caseysue tiffany60896
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charlie58834 ruth57682
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Hey Ruth,
Good to hear from you again! Sorry to hear you are having such difficulty with PHN. Summers are worst for me too, as it seems that heat exacerbates the itching and pain. You asked if anyone has reported PHN going away. I do recall someone, and I'm sorry I don't remember her name, saying her PHN stopped after a year or so. But I really think that is very unusual. Maybe she had a very mild case?
So, for the vast majority of us, the best we can do is learn to manage it better. I believe there are two parts to that:
1. Trying everything you can until you find some things that help decrease the pain.
2. Getting control of depression and anxiety so that those emotional disorders don't magnify the pain.
Depression and anxiety are very treatable. The biggest barrier to improvement, oddly, is people's reluctance to get treatment because they don't want to be seen as having an emotional disorder. It comes from the old idea that emotional disorders mean we are crazy or weak or defective.
Once people admit they are depressed or anxious, they then have the possibility of getting treatment for it. Effective treatment for these consists of therapy [my experience and the research literature point to CBT/cognitive behavior therapy as the quickest AND most effective treatment], and/or medication.
So many people are afraid of psych meds. I won't go into the odd history of why this is...it partly involves the originator of Scientology. But, here are the facts about antidepressants:
1. I have seen thousands of people on antidepressant meds in my professional career. The vast majority reported good results if they took the meds and worked with their doc to find a dosage that is effective.
2. I myself am on Wellbutrin, 300 XL, and it works great.
3. Most people report few or no side effects to the more modern antidepressants.
4. These meds do not "make you happy." They make it easier for you to make yourself happy. They help people to have more energy, think more optimistically, stop suicide thoughts, and focus more on solutions.
Therapy: As I say, CBT is very effective, but all therapies have shown some effectiveness with depression. Most people do not require long term therapy. Most get better and feel better within a few sessions. Most people actually find therapy to be pretty enjoyable, not scary and threatening like they thought it would be.
For you, I would recommend first to stop thinking the overly pessimistic thought "Nothing works." It's not true, as you yourself write that creams/gels have provided some measure of relief. Then, see a therapist, or at a minimum get some good books on CBT and work on changing other thoughts to help decrease depression. Consider seeing your doc about an antidepressant. DO NOT take amitriptylene/Elavil. There is research that it works with pain, so docs prescribe it, but I've not seen thatit works. It is an older antidepressant that has lots of side effects. It will make you drowsy and last all day. My favorites from clinical experience: Wellbutrin/bupropion, and Celexa/citalopram.
Creams: I've recently found that triamcinolone acetonide is more effective than Aspercreme for me. It is an eczema cream available by prescription.
Please let me/us know how you are doing if you choose to follow this advice. It'll help us, and probably you too!
babs99203 ruth57682
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Hi Ruth (and everyone), Why are you/we writing? Because no-one else can really understand what we go through and this is a supportive, nurturing place, I'm glad you came. It's hard when you're really down, in pain and feeling alone to reach out and find the energy to type, Been There, doing it right now. I'm' only at 9 months, but as I try and decrease my Gab, I notice the depression kicking on and off. I'm lucky that my pain is less than others, but I do "baby" mysellf. I've learned what makes it worse like lifting, twisting and bending so I try and limit those activities. Do you know any of your triggers? I can usually figure out what i did 2-20 minutes earlier and go, darn! But sometimes, there's just nothing I can determine, it just seems to happen. Some days are good, some days are not. I guess we all need tattoos!
I can sort of keep track of my improvement by looking back a month or two ago. Sometimes I can remember a specific thing, such as now I can carry a purse, with much less pain, riding in the car is more comfortable. If I try and compare to a week or two ago, it doesn't work.
I too get really discouraged. Right now, I broke/sprained a toe, so I'm having getting around, on top of the PHN. Someone mentioned braless, yes!! I've been shoppingi for comfortable, printed tops that disguise that fact. (Sorry Charlie, but this IS a big thing for us). I do have two new bras, front closing that I can tolerate better on some days than others.
I hope that since you wrote this, you're doing better. To add to my woes, I also had to quit my job. I'm 62, and until this was very active. But I couldn't work with the PHN and Gab Brain. So, that makes this all harder to deal with. Everyone says, how wonderful for you!! Ahh, not so much, I'd rather be working, but I have to admit, on my bad days, it's easier to not have to deal with work.
ruth57682 charlie58834
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Charlie thank you again for that excellent advice and information. I will talk to my doctor again about the antidepressant . Thank you Babs, Caseysue.
and all of you that write and remind me that I am not the only one living with these strange pains. At least everyone I know around here just can't quite understand what I am unable to do. My kids want me to travel as they live quite far away and I simply can't do that. I do sort of know what triggers real bad days . Stress is a big factor. If I know I must go somewhere such as the dentist, if fact any sort of appointment away from home, it flares up. Also as you said Babs, any straining, twisting or lifting will set it off. Also as you mentioned, Charlie, heat and humidity seem to be a factor. Usually it is dry here in Colorado, but lately it has been humid. I am somewhat frustrated that I can't exercise like I want to which also doesn't help. Between the PHN and the neuropathy even walking is difficult. Just 2 years ago I was hiking in our gorgeous mountains. I can't thank you all enough for bearing with me and my complaints as I am sure some of you must be worse especially if you have this in the head/eye area. I was wondering if you all had gotten over this somehow and not writing any more. Thanks again.
babs99203 ruth57682
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I do have two friends who had PHN and had almost a complete recovery. I say "almost" because when they thought about it, which they seldom do, there are times that they do still feel some twinges. One is a dance instructor and his leg/foot was involved. When he really over does it, he'll feel it a bit. The other person said occasionally during the year she'll feel something. That gives me hope.
On a separate note, I had read somewhere that an MRI, maybe an fMRI showed some changes in the brain: A study by Haanpaa et al revealed the following: [6]
MRI lesions attributable to HZ were seen in the brain stem and cervical cord in 9 patients (56%).
At 3 months after onset of HZ, 5 patients (56%) with an abnormal MRI had developed PHN.
Of the 7 patients who had no HZ-related lesions on MRI, none had residual pain
The depressing part is that I found three references regarding the topic on Google. But after reading more carefully, I realized they all referred to the same study which was originally done back in 1998. Let's hope there have been many more studies (but I think we may all doubt that) since then.
Anyone else want to take up a collection to find a needy scientist to study this blasted thing!?
ruth57682 babs99203
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babs99203 ruth57682
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I forgot (Gab Brain) to mention that the commented on the MRI/Brain/PHN link, wondering if indeed PHN=depression (for some) because of changes in the brain. Regarding my friends, the dancer was laid up for several months, the first two months with severe pain as it was the sciatic nerve down to his foot. I think it took about a year for him to feel that he was definitely getting better. That was about 10 years ago. The other person, I don't remember, we didn't talk that long, but I feel it was also close to a year that they felt they had problems, then were doing better.
I'm trying to very objectively quantify the types of pain I see a decrease in and how much greater activity I can do with less discomfort. My old stand-by used to be "I got through the day without crying!" It's been almost exactly 9 months since my shingles and I definitely have a decrease of all types of pain. Emotionally and cognitively, I feel like I'm still a mess at times. The brain fog and memory loss scares me, and I hate getting weepy. About once every 10 days I get hit with a bout of pain and weepiness that lasts for about 10 seconds. Wham! The sharp, stabbing pains are better, as are the burning.
I think we need to use a much longer pain scale-on a scale of 1-1000, then I can see I've dropped from 850 to 600 to 550 to 475 to 400 etc. 1-10 isn't enough.
ruth57682 babs99203
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The brain/PHN link is I think one more example of how extremely complicated this disease is. I can tell you that the only improvement I can see after one year is I no longer have the DEEP stabbing pains I had for the first 6 months where it even hurt to breathe. Now it has transitioned into extreme skin sensitivity in a few areas.unfortunaetly one of the areas I'd just below my right shoulder blade where a bra strap hits and also underarm where most seams are. (Sorry, Charlie, it is a big deal). I have tried strapless, comfort, fasten in front and crossover. Nada! Today in order to get out at all I wore a lidocaine patch under a sloppy shirt!
Guess I'll be thankful for slight improvements.
tiffany60896 ruth57682
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Hi to both Ruth and Babs,
My issues are very similar to both of yours . As I mentioned in earlier posts, my shingles started Nov 2016. PHN followed. It's such a comfort to have this forum because otherwise I would think I was truly insane because of all the strange pains and emotional issues I experienced after getting these two illnesses. I wanted to inject just a small bit of hope into the discussion. I have a close friend whose husband had a bad case of shingles five years ago. He had PHN for several months but the pain did go away after a year or two. He says he has no pain now. Also, my best girl friend who is a nurse and her husband, a doctor told me that many of their patients who had PHN got better but it took a long time. My girl friend's sister had PHN on her face and eye and her PHN after time went away as well. So, there is hope that the nerve pain will either go away at some point or lessen so that it does not impede our lives. I suspect that what may happen over time if a person practices living an extremely healthy lifestyle and concentrates on reducing stress or eliminating it, that PHN nerve pain may lessen so that we don't focus on it as much therefore rendering it almost unnoticeable most of the time.
I am so glad you mentioned the crying jags you had with PHN. I couldn't understand why I was having uncontrollable breakdowns of crying especially when I first got PHN. Now, I realize it is one of the many weird symptoms that can come with shingles and PHN. As Charlie suggests, dealing with the psychological problems associated with shingles and nerve pain can be a big part of healing PHN or at least lessening the pain to the point where we can live our lives close to normally again.
ruth57682 tiffany60896
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Caseysue ruth57682
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I have learned to be thankful for the small things. After 9 yrs. I still get flare ups, but the most part I only have areas that burn. Creams help enough that I can sleep. I am still sensitive to heat. My area is just under where my bra is. The other area is below my ribs front and back. I do find doing something to distract me. Mine is adult coloring...sounds crazy but it helps.
I sent best wishes for your improvement.
ruth57682 Caseysue
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charlie58834 ruth57682
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Ruth and Babs,
Where did this idea that I don't think pain exacerbation with bras is a problem come from? I don't recall ever saying or implying that.
Hinter ruth57682
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I am asking my PCP for a referral to a Scrambler Theropy clinic about 3 hours drive from here. The treatments are not cheap, maybe my insurance will help pay some of it, but being pain free will be worth every $$ if it works like they say.
ruth57682 charlie58834
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Charlie, we were both teasing. No, I am sure you understand the problem, but it seems that most on this site seem to be women. Believe me, we all are grateful for you sharing your expertise on this depression. Certainly didn't mean to offend you in any way.
ruth57682 Hinter
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Yes, I tried a razorback and couldn't tolerate that either. Please keep us posted if you try the Scrambler. Are you in the US? That was never offered to me.
babs99203 charlie58834
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Sorry Charlie, it's a Girl Thing, I got her right away. When I was visiting my daughter and son-in-law she helped me shop for my new bras. My poor son-in-law had to be sick to death of hearing about women's underwear! He grew up with only a brother and this woman stuff is foreign to him. I guess guys could demand equal time for male specific PHN issues, but I'm not sure if there are any.
Hinter, the only Scrambler I know is an amusement park ride! I guess being spun around until I throw up COULD distract me from my PHN, but I'll pass on it.
charlie58834 ruth57682
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Hinter might be on to something. For me, light touch or rubbing drives me nuts, but constant pressure is actually not too bad, even comfortable at times. For underarm and torso pain, I wonder what tight Lycra would be like. My wife wonders if a sports bra, like Champion makes, might be an improvement. She says they are cheap, so not too much is lost if it does not help.
ruth57682 charlie58834
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babs99203 ruth57682
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Finding one that helps brings back a feeling of normalcy, makes you look better and feel better. I'm just so self-conscious when I'm not wearing one. Just one more inconvenience we have to deal with.
ruth57682 babs99203
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I will definitely will try Penneys. I brought a couple home some months ago from Target but none worked. I did try a style that had straps that crossed in the back but that was painful awful. I had better go to the store and try a bunch. Even though I am small, 5'2 and 120, I am still uncomfortable without one. In summer with t shirts, it would be laughable😃Especially at my age!! I must say I am feeling better with all these new suggestions to distract me!
babs99203 ruth57682
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I'm so glad you're feeling better! The most insidious thing about the depression, or whatever you consider it, is thinking you'll always feel like this and always have. As I decrease the Gab, I'm having more problems with it, but then poof! it's gone. That's interesting about Target, my sister has a friend who knows of my problems and she really recommended the bras at Target, I never got there, but I think the ones you tried were what they had suggested.
Try looking at your wardrobe again. I had some really nice sleeveless tank-top style tops from Loft and Ann Taylor I stopped wearing. They're a print, slinky fabric in the top and a different fabric in back. They were too small, but so nice I still kept them in my closet (Thanks Gab, I LOVE the weight gain). Well sans bra, they're loser and are really comfortable and with the print no-one can tell!! I wish I had thought of them weeks ago (again, thanks Gab, I can't wait until my brain works better again.)
If I had a nickle for everytime I say, "I just wasn't thinking", I'd be rich. I used to have an incredible memory and was very analytical and precise. Well, I'm down to 1800 mgs so someday, I hope my brain will work again, but at this rate it could be 18 months. Gee, and we wonder why we get down??
ruth57682 babs99203
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Thanks to everyone's comments on Gab, I decided to not keep increasing that. At one point I was at 900 mg a day and started forgetting things. I have now cut back to 500mg a day. I take 200 am and 300 pm and I feel pretty normal in the brain department . I don't think it helps the PHN, but I do notice the neuropathy is much worse. Sooooo I had to choose which one I valued most!!
babs99203 ruth57682
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500 mg is actually a moderate to low amount of Gab, I was at 2400 mg a day a my worst. It's taken me 7 months to get down to 1700 (600, 600 and 500). Can you do a happy medium and increase just a little, while checking with your doctor? I know that neuropathy is very difficult to treat. Also, if you are just making these changes now, it can take a bit (days or weeks) to have the brain stabilize. As you decrease the Gab, the brain tries to make up for it and actually makes it and increases it. So there's a see-saw side effect. I have to wait 4-6 weeks between each small decrease as I get increased pain, confusion and memory issues as i taper off. Lovely stuff. I've read some fascinating articles and posts regarding this. I was a medical secretary for 30 years, so I get a bit nerdy and enjoy reading those things.
babs99203 ruth57682
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DARN Gab Brain! I started makingi my lunch and realized I forgot the most important part: I am so sorry you've got to decide between your memory or your pain, Isn't this just awful? I imagine that some days you want the memory, then you wish you could get rid of the pain, right? That's why I suggested that maybe you can tweak the meds a bit. Also some people have better results with Lyrica vs Gab. And vice versa. I was at such a high level, it would take too long to get off Gab to switch to Lyrica. Some people switch while being on one, and adding the other, but that is not recommended.
ruth57682 babs99203
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I was on the Lyrica for awhile but it really didn't do a thing and I hated the fact that I felt I couldn't have my glass of wine in the evening!! Gotta get my priorities right? I can do that with the gab! 😊
Hinter ruth57682
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Ruth, I have made an appointment for the Scrambler therapy at the end of October. I'm not sure if insurance will cover it at this point, I sure hope it will qualify for at least the out of network co-pay.
Per the info I got from them, I need to be off Gab 2 weeks before my treatments (there are other requirements too). So I will start the tapering off Gab soon. They also gave me some hope of being pain free for awhile. They say the treatments could last from 3 months to a year.
I looked on their web site for the time the treatment would last, but it wasn't there. It was in a bunch of info they emailed me, along with an extensive health history to fill out :-( , (most pages being scanned in copies of old mimeograph machine copies, ugh!).
For more info, Google "Mayo Clinic researchers test scrambler therapy for pain", other links are sure to show up as well.
I sure hope it will last a year plus!
I will share more after I start.
babs99203 Hinter
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That's an interesting theory. I read a few articles now. The good news is it isn't an invasive procedure, but there seems to be conflicting results. I wouldn't count on insurance covering it. They should be able to give you an answer now, but they could easily rescind it. And if it's covered as "out of network" it maybe be at a much higher rate than an in-network charge. i.e. if it's billed at $800 and insurance does their agreement and you'd owe a reduced rate of $575 that could be applied to a deductible. Out of network, your charge would be the whole $800. These are obviously made-up numbers, but you get the idea.
Be very careful as you decrease the Gab. you really have only 3 weeks to do it. I have a terrible reaction and can only reduce every 30 days by 100 mgs. I was at 2700, and am now down to 1600 mg/day. Not everyone has as strong a reaction and if you're on a lower dose, it may be easier. Talk to you doctor and especially a pharmacist.
Best of luck with this, it seems like a strong option. (I was a medical secretary for 30 years, so I'm very grateful that I've learned some things about the medical world).
babs99203
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Darn, I forgot to add, the articles mention if being used for peripheral neuropathy, which is a little different from the nerve pain of shingles. Have they said it's been used on PHN or are you part of a clinical trial?
babs99203
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Searching for "scrambler for PHN" I got some more info. There's a nice article that the NIH (National Institutes of Health, our top medical research facility) posted from the Korean Journal of Pain on a study done on 3 women. It's a small study obviously, but after full treatments, these were the results: "Two of the three patients were given one more treatment for a transient aggravation. Since then, all patients have been well managed with oral medications and do not complain of any undesirable side effects. In addition to pain relief, the fact that tactile allodynia disappeared is also worthy of notice. We think that the disappearance of allodynia may be associated with central reorganization, but do not know exactly what this mechanism is. Thus, further studies will be required to investigate this phenomenon. Several preliminary studies on the efficacy of Scrambler Therapy for cancer and refractory neuropathic pain have been introduced recently and reported good outcomes like in our cases [3-8]." This case study is from 2013, so I'm sure if more searches were done, we'd find more info.
I'm lucky, yes I have PHN, but my pain level is lower than many others, but it seems that for those with a higher level, this may greatly decrease it. As Charlie's mentioned, we need to use several tools to find relief, and this may be one of them. Again, the very best of luck on this.
ruth57682 Hinter
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Hinter ruth57682
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Thanks babs and ruth. I had to go look up the term you used, not that I will remember it, but it might be handy filling out paperwork sometime :-)
Allodynia: Pain in response to normally innocuous stimuli. This is the result of molecular or structural changes in nerve cells.
That's one of mine certainly, A brush against the area is painful, Wind, the shower, clothing, the seat-belt in the car, the list goes on.
I live about a 4 hour drive from the clinic in RI. I am not part of a study, and they have treated PHN successfully in the past (only one PHN patient is shared on their web site, but they have done others).
Insurance coverage is still up in the air. I will have to wait and see.
I have started the Gab decrease plan laid out by my doctor, I was at 1800. If I have to delay the treatment because of side effects, I will.