PHN-life and death

Delite, I'm not sure which person you're directing this to, possibly r.oka. I just got the email that there was an update, so I came to the forum. If it's for me, I am improving. I'm down to 1500 mg of Gab/day and have been able to resume some activities, such as ballroom dancing. I'm not sure how others are doing, but I'd be curious also.

But I've got a question. Does anyone know how and why some of the posts got deleted by a "moderator"? Who are the moderators? I've been very active on this forum and try very carefully to be supportive and informative. I have no idea what posts of mine got deleted or why. It appears that a number of them in this thread were deleted, anyone have a clue?

 

Hi Babs,

Mentioning a name of a newspaper (in which there was a relevant article) has caused the program to kick out my post. Having a link to another website has done it also. I think the “moderator” is a built-in algorithm that looks for such things. I guess they worry about people advertising on the site without paying. 

Thanks Charlie, I try to avoid anything I think the bots may not like, but may have missed it. I'm in a few other forums similar to this and the rules are pretty straight-forward.

 

Hi Ebbia,

It is very concerning that your husband has lost so much weight and is having thoughts of suicide. Both of these are symptoms of severe depression. I’m a retired psychologist and have had PHN for 27 years. I want him to do two things:  

1.  Immediately make an appointment with a therapist to get the depression under control. It is a very treatable condition, and as depression lessens he will be able to manage the pain better. 

2.  I’d like him to go onto this site himself, so he can get some support and useful information about PHN from those who have it. People on this site have a wealth of experience from the patient’s point of view. 

It is important for him to know that PHN’s symptoms decrease with time!  Mine was quite severe initially, but now my pain and itching is more of an annoyance rather than being a life disruptor. Also, once I got my depression under control (I was initially very depressed) the pain was much easier to manage. Both Cognitive Behavior Therapy and the newer antidepressants (SSRI and Wellbutrin) were extremely helpful. 

Please urge him to join us here. 

Hi Ebbea,

My initial reply to you is being "moderated" by the site owners.  This usually means it won't be allowed.  I mentioned some specific meds, which is the only thing I think might have flagged it.  So, here it is again without those brand names:

It’s very concerning that your husband has lost so much weight and that he is having thoughts of suicide.  Both of these are symptoms of severe depression.  I’m a retired psychologist with PHN since 27 years ago.  I want him to do two things:

1.  Immediately make an appointment for therapy from a qualified mental health professional, hopefully one with experience in treating chronic pain patients.

2.  Go onto this site himself.  The people here have a wealth of experience with PHN from the patient’s point of view. 

It’s very important that he knows a few things:  PHN’s symptoms lessen with time, very slowly, but they do.  Mine, while initially quite severe, is now just an annoyance.  It does not stop me from having a good life. 

Initially I was very depressed.  Seeing a therapist and doing cognitive behavior therapy [CBT], and modern antidepressants were very helpful for me.  Once I got the depression under control I found I was much more effective at managing the pain.  You must use the therapy and meds as directed, and give it some time, as antidepressants take several weeks or so to take full effect ONCE YOU ARE ON AN ADEQUATE DOSE. 

Personally, I chose early on to avoid opiate and other oral medications.  I’ve used only topical creams/gels for pain management, with some good results.  Do not make your goal one of “getting rid of the pain,” as that is not possible for most of us with PHN.  The achievable goal is to manage the pain, make it less intense and learn to have a good life with a lesser level of pain. 

Please join us here!

Tell him it will get better. To what degree varies, but it WILL improve. For some it's at 4-6 months, for others a year or longer. Some people have the PHN go away completely, for others, it's always in the background, but manageable. It's been 15 months since my diagnosis and I could barely see any improvement. I realized it wasn't going to be days or weeks, but I learned to notice small things that I could do better or without pain from previous weeks. Even remembering that helped me.

Where is his shingles? That would be helpful to know. The Gab is a hellish drug, but can help with the pain, but often needs to be increased to really see an improvement, but of course the side effects will be greater too. But for me, I needed that relief from the back/chest pain that I had. I also use Aspercreme pain cream with Lidocaine, Extra Strength Tylenol 3 times a day (both of those were 4 times at day at my worst), I was at 2700 MG of Gab, which is a very high dose, and a prescription anti-inflmmatory I'd been on for years. There's some research showing that anti-inflammatories work well with Gab and enhance its benefit. I'm down to 1200 mgs of gab and have regained a lot of my previous activities. But it IS a struggle as every day varies. I can have a good 2-3 days or even a week, then have a tough day or two, but the AM getting better.

This condition takes away your feelings of control, is filled with uncertainty and pain plus it seems depression goes hand in hand with it. Also the danged Gab causes those symptoms. You are right, many doctors are clueless about treatments. Luckily I had a good doc, but I did my own research and used this group as a resource.  Best of luck to him, he and you are not alone.

I will try for the third time to respond. The significant weight loss and suicide thoughts are signs of severe depression, and are very concerning. Please urge your husband to get therapy from a qualified mental health professional ASAP, preferably one who is experienced in or specializes in chronic pain. And, to give the therapy and/or meds time to work. Depression is very treatable, and improvement in mood will help produce better pain management. 

I’m a clinical psychologist, retired, with PHN. Babs is right, symptoms do decrease with time, slowly but they do. 

Testing to see if moderator will allow my replies. 

Charlie, nope, they aren’t getting through. That happened to me once and I never figured out why.. We know that your posts are thoughtful and helpful.

Thank you for your reply. The shingles outbreak was on the base of his back, just above the waist and following on half way around his right side. At the moment, he's been prescribed 300mg gabapentin, one 3 times a day and and 500mg of Zapain, (a mixture of tylenol and codeine phosphate, 500mg/30mg) 1 or 2 four times a day, but he says 2 makes the pain worse and also makes him vomit.

I asked the Dr. if he could have lidocaine patches, (I'd read about them online) but he said the shingles area was much too big. I wasn't aware there was pain cream available, I'll ask about that next time the Dr. visits, thank you. 

So far the only side effects he's getting from the low strength pills is extreme tiredness, he has broken sleep on and off 24 hours a day but when he wakes up the pain's at its worse. Maybe the Dr. will slowly increase the dose of gab., I suppose patients are given a low dose as possible to keep costs down and hoping it'll control it.

I'm sorry to hear you've been through a rough time with this for so long, what a nightmare. I'd never heard of PHN until my husband was diagnosed with it and am shocked and very sad at how many people suffer from it.  

Hope a moderator does allow your reply Charlie, I'd like to read it.

Anne.

Although I understand the need to reduce the usage of opiates, sometimes this is the most effective thing initially, until other things can be tried.

I would suggest that you really make a stand at your doctor and do your utmost to get a prescription for opiate-based pain relief.

My father has something similar (left side, starting from the base of the spine and goes around to the front-side, he is also operated for cancer on this left side, adding to the complexity).

It's now year 7 and he is still struggling and needs to use opiate-based pain-relief to be able to even walk around (more or less constant pain).

Naturally, he doesn't like being on those kinds of meds, so he is trying most other things trough his doctor to see if he can get relief. (currently trying qutenza-patches, he also tried Botox several times, with no real beneficial effects for him unfortunately).

I know the medical institutions in my own country always want to try out antidepressants, then anti epilepsy meds, then pain-patches (qutenza) etc before they prescribe opiate-based pain-killers...I think that is so wrong that I don't have words, IMO they should treat the most acute pain FIRST, then start trying out alternative treatments, to see if they even have an effect at all (it is very individual) and then regulate the usage of strong pain-killers in relation to that.

I hope you get some relief somehow, I know my father also lost a lot of weight.

Oh....one more thing.

Where I live, they can prescribe bottles of energy-drinks (looks like protein-shakes) which patients with problematic appetite can drink. They will regain energy, strength and stop the weight-loss, here they are called 'Fresubin' and come in a variety of flavors.

I am not even sure if you need a prescription, but here doctors can prescribe it for chronic patients, so you don't really pay a whole lot for them.

I really wish you the best and hope you get this under control (that's normally what you can hope for, controlling the reduction of pain, because from what I have read, you can rarely make it go away completely, unless it stops by itself, which it might....and as charlie says, it can change character over time).

For the record, should these posts be moderated, you still have my original reply.

My father has prescribed OxyContin and OxyNorm, one of them, is a "base-painkiller" which he use on a per-day basis (fairly even dosage) to manage the day-to-day pain-pattern.

The other is a quick-working pain-relief, which he takes if he gets a turn for the worse, or if he has pain, but want's to socialize or travel.

Both are addictive and both need higher doses over time, as patients generally develop tolerance for opiates over time.

Hi Anne,

i see they finally allowed my replies, so now you have all of them, above. I tried lidocaine patches years ago, but found them expensive, and lidocaine gel worked just as well. It is over the counter here in US. Aspercreme works well for me. But I just found the best cream:  triamcinolone acetonide. It is a prescription cream for eczema, an anti-inflammatory. Not expensive. Tiny amounts work very well for me, and in addition to helping with the pain it also reduces the sort of numb feeling I’ve always had. It does take a long time to kick in, so I sometimes use Aspercreme first, then add it. 

My my biggest concern for your husband now though is the depression. PHN isn’t lethal, but depression can be. 

Be be really careful with the opiates. They are not good for long term use. Some are quite addictive. Working in a hospital, the worst opiate addiction I ever saw was a PHN patient whose docs kept giving him stronger opiates until he just slept 24 hours per day. Great docs, huh?  

 

This website is UK based, but a lot of us here are in the US. If you have questions about his care, don't wait for the next doctor visit. Call and talk to a nurse with your questions, that's what they're for. You'll need to be an advocate for him and get a crash course in care-giving. It's not easy, I know. As far as the creams, there are several brands with 4% Lidocaine in them over-the-counter. I just happen to use Aspercreme, but there's also Salon Pas and some others. Yes, the area may be too big for the patches, you'd have to cut them. Those too are also available without a prescription. The downside is they can only be applied for 12 hours, then they have to be off for 12 hours. In theory the pain relief should last past that, but I didn't feel it did. With the creams, you still don't want to over-do it, but you can more easily space them out from when you wake up in the AM to when you go to bed. I used to do it at about 7:00, 11:30, 4:00, 8:30 along with my Tylenol.  As far as the Gab, it's danged if you do, or danged if you don't. Many people don't want to be on it because of the side effects, but it takes a few days to get to a therapeutic level and for me, it did help the pain. However, knowing what I know now, I would have not gone up to the 2700.

In the first few weeks, sadly, there will be times nothing seems to help, but those stretches may only last a few minutes to an hour or two. At it's worse, I'd pace and count, anything to distract myself. And cry and scream into a pillow, in all honesty. BUT there will be times during the day it's lessened. There are some triggers which can increase the pain. They can vary but consider these:  pressure on the back from clothing-some people wear only extremely loose, soft clothing, or even nothing on top. Hot or cold showers, breezes, any touching, lifting, bending, twisting. Distractions are helpful. Can he get lost in a movie or music? Petting an animal, conversations with friends or family? I heartily agree he needs to see a doctor for dealing with his depression. Been there, I understand. But finding any pleasurable moments thru the day or at least things that decrease his pain may help. He may not be able to see any way out of this or feel he can feel any better, but he will.

Charlie, I just want to update you on Aspercreme, I did some trials with my father.

Aspercreme comes in two variants, one with Trolamine salicylate and one with Lidocaine.

Trolamine salicylate is a derivative of Aspirin and this is restricted in the EU (so I had a hard time sourcing the creme, but finally got hold of it trough eBay).

I also made sure my father consulted with a doctor before using it, as Aspirin can influence the blood (thinning) and can in extreme cases cause strokes or excessive internal bleeding (you need to eat a whole pack of Aspirin though....but that is the reason the product is restricted in the EU marked).

I also made him try Lidocaine in the form of a spray (4%), this had a temporary relieving effect, around 30 minutes, so he was using a lot of it and finally gave it up.

There are trials pointing towards good results with Qutenza patches, combined with pain-relieving patches in-between treatments, I am not sure what the pain-releaving patches contain, but they are supposed to work for 12 hours.

Yes Opiates should be handled with care (that's why they are indeed restricted), but some patients simply get very little out of alternative treatments, at least the opiates work.

One should always try to avoid being on opiates I agree , but I know it is very hard to even think of trying something (especially something you apply to the affected area) when the pain is so bad that you are not even able to sit up straight.

Oh and the Aspercreme with Trolamine salicylate did not work on my father at all, unfortunately, I see I left that our of my answer.

 

[Image result for aspercreme ingredients with lidocaine]

Inactive Ingredients: Lidocaine hcl 4%, Acrylates/C10-30 Alkyl Acrylate Crosspolymer, Aloe Barbadensis Leaf Juice, Aminomethyl Propanol, c30-45 Alkyl Cetearyl Dimethicone Crosspolymer, Caprylyl Methicone, Cetearyl Alcohol, Ceteth- 20 Phosphate, Dicetyl Phosphate, Dimethicone, Disodium Edta, Ethylhexylglycerin, Glyceryl Stearate..I copy/pasted this from Google and I don't want to type the rest that didn't show.

However neitherTrolamine salicyclate nor any other product that is aspirin based are in mine. That's why I wondered why they called it "aspercreme". I will say, I had a problem when I had applied the cream and then two hours later got a lidocaine injection from the dentist for dental work. I got the classic lightheadedness, dizzy feeling that could occur. I also had that happen when I applied it after using a pain patch. I didn't realize you couldn't do that. I had my husband wash it off immediately.  The dentist claimed it can't happen, but I have low BP and have reacted to similar drugs like that. It wore off after about 20 minutes. Not fun.

Thanks Babs. 

Coincidentally, I'm a trained carer who took early retirement 6 years ago, but medical knowledge taught to carers is pretty limited and as mentioned earlier, I'd never heard of PHN, but knew about shingles and recognised it when it first appeared. 

My husband (Norman) cheered up a bit when I read him your message that the chronic pain won't last indefinitely, hope yours continues to improve.

Please read my reply to Charlie above.

Thank you so much for everyone's replies, it's very much appreciated and you've all given some great advice.

Prescriptions are free in the UK for people over the age of 60 on the NHS, so we don't have to worry about costs, but I think that's why Dr.'s are reluctant to prescribe too much medication as the government has insisted the NHS must save money as demand has increased so much due to the country's constantly growing population.

Charlie, unfortunately my husband isn't in to using computers. He does have a laptop, but only uses it to buy from ebay, using a computer to join a discussion group definitely isn't his thing. The Dr. suggested a local therapy group with other chronic pain sufferers, but he refused that too, he's a quiet and shy man. I am reading all the replies to him though and he says thank you to everyone. 

I've written down all the recommendations from everyone for suggested medications and will ask the Dr. to take them into consideration for suitability. 

Thank you for that info. Martin. I suppose the meds. that work for some are of no help to others.

Hello,

Thanks for this awesome dialog and discussion. I am a phn patient that reacted to lidocaine with a horrible painful rash. Others might have similar issues with creams containing lidocaine. the patch might also have similar issues. I have found lidocaine to work on reducing a few different types of pain caused by phn.

a solution to derma application is to try lidocaine infusion. I had less of a reaction when I Used lidocaine via subcutaneous infusion. It’s 5 hours of lidocaine infused into the skin via small needle. 

It’s anoither way to achieve pain relief from lidocaine and I found it more effective then creams, the side effects were manageable.