So, what happened with our PHN group?

Hi Etnaca, I'd say I'm glad to meet you, but as the expression goes, I wish it were under better circumstances. Has your PHN improved at all over the years? Mine has gotten quite a bit better, but right now I'm discouraged again. As I taper from gab, (VERY slowly and carefully) I have more pain etc. I had hoped that by this fall when I'm off the gab, that my PHN would be very minimal. There are so many variations, that I know it's hard to predict. In the past, I was pretty optimistic, as for a few months it seemed to make quicker progress in the decrease in pain, now, it's a bit different. It's hard to tell which is the gab masking the pain, worsening the pain or if the PHN is getting better or worse.

I'm sorry the nerve block didn't work. Many of that type of treatment seems to be 50% or less effective. I'm leery of any even slightly invasive procedures and I don't know if I'd take any more meds when I'm finally off the gab. Many days I think it's causing me more misery than the PHN.

Hi, I've had PHN for about ten years . Left side of the spine between the shoulder blades. I still sometimes get a rash going up left side of my neck which itself is more an irritation than a pain but the pain kicks in a little lower down and sometimes it's agony. I take amitriptyline and tramadol but I try to limit the tramadol to two a day. When the pain gets really bad, generally at night when I can't do something to take my mind off it a bit, I might go up to four in a day. I take them anyway, irrespective because once the pain kicks in, it's not easy to get control over. I work on the premis that it's better to stop it getting going than trying to cure it.

Hi Babs, my pain isn't as bad as it was in the early years. I did taper off Gab. Slowly and i do think my pain is worse but there were so many issues with taking it. I also take Amitriptyline seems to help. Its very hard for me, to stay ahead of the pain. I end up waiting it is bad and the tramadol takes so long to work.

Oddly, I found tramadol took a while to kick in but if I take a 15 minute walk after taking them I find it works quicker . Maybe a bit of exercise speeds up metabolism /digestion and maybe gets the ticker going quicker so speeds up the distribution network.I only take a walk if I'm late in taking tramadol and the pains got going, but if I take it before the pain kicks in it's usually OK.

I've had PHN for 3 years steady. I had flare-ups a few times a year for about 6 years before that. Oddly enough it's comforting to know that I'm not the only one with this lingering issue. Sometimes I think it's just me, all in my head and I'm being a wimp. So thank you for sharing.

I find it helpful too. I've gotten pretty used to its ins and outs in the 2+ years I've had it but yesterday was a new one. Mine is along the bra line, front to back and the pain generally is in my left shoulder. However, I'm used to the random, different types of pains that occur right, left, front, back, upper, lower, sharp, dull, aching...well you all know. But yesterday for 12 hours, I felt like I had a pulled muscle in my back rib area, or that someone had kicked me. Every little movement made it worse. I KNEW it was the PHN, but I'd never had it like that before, not there, not for 12 hours. I started to think it was something else, but I didn't know what.

Well, today it's gone. I'm glad but puzzled. I must have aggravated it earlier in the day, lifting something (that was only about a pound) and for some reason, the dang nerves and brain stayed haywire. So, be prepared for anything, right? I'm exhausted today, which I guess should be expected.

HI to anyone out there with PHN.

I thought this site had died. I am in year 4 of this painful and frustrating disease. Will provide detailed update if others are still involved. We moved and I had to get resettled.

I'm still here. I wonder if others have their notifications sent to an email they don't use often? I use this one every day.

Still getting settled in our new home. Stress of this move seems to have exacerbated the PHN pain. Has this site faded out?

Well Kalgranny WE'RE here and that's what matters, right? I totally agree that stress makes the PHN worse. I had more problems during the holidays. Also, the extra physical activity may contribute to that. Right now, I'm doing quite well. My shingles was back in October 2016 and I seem to one of the lucky ones where the pain is improving. I can point to a number of reasons why, but I'm just glad it is. BTW, I've read of people even 15 years later see a dramatic improvement, so don't give up!

Now that you're more settled, can you take it easy, rest more and feel better?

Yes. That's the plan. This site was so active. I wonder what happened?

I stopped coming because I got more active in FB groups for one. But the other issue was the updates that made it SO difficult to use. The constant pink color with no options to correct were very frustrating. I finally wrote them a few months ago and said if you're going to point out our errors, can you at least give us a spell check that works?! I've noticed it does now. But spell check doesn't work at all with my iPad, if I ht the shift key to capitalize a letter, it keeps it all caps. Then things were being held up for days or weeks for moderating, even tho there was nothing wrong with the posts. I think a lot of regulars just got fed up. In the problems of the world, these are minute, but why come to a sight if it's such a hassle to use? People will go elsewhere.

Ironically, as I was posting in a different thread, I found one more new problem with this stupid upgrade. I was trying to copy/paste the correct spelling of a word I found on line, as spell check didn't have it. For some reason, instead of putting in that word, it copied the last of my text! A whole paragraph that I had just double-spaced to make it a separate, new paragraph. AND, my lengthy reply there is now being moderated. I had started to copy/paste my long replies, so if they never showed up, I could just re-submit them. I should have done that. But I'm assuming it will show up soon.

Hi Babs I don't often use this e-mail address so I haven't been here for some time. However, referring to your earlier mail I was surprised you were on 2700 m Gab. I was started on 1800m from the start of shingles 8 years ago. Now with PHN I have worked it down to 800m and trying to get off the tabs. But I feel my pain, as on my side can't be so bad, I call it an inconvenience or encumbrance it is still debilitating, at first I wanted to cry but decided it would not get the better of me, easier said than done. Thankfully it doesn't stop me from sleeping. I recently tried Ralvo patched on prescription, I'm not really sure whether they did work for me so I have stopped using them, although they may work for others. Talking to a pain clinician he said take 3 months to wean off the tables, let the body get use to it, I reduce them by 100m at a time, Wish you the best.

Jon

Hello again John. Well, I'm surprised that your doctor started you on such a high dose right at the start! It's a powerful drug, so they normally start at lower doses to see how a patient tolerates it, then increases it.

I started at 300 mg/day, then it was increased to 2700 over a couple of months. I tapered for about 3 years, at first too quickly, so I had nasty withdrawal problems, then learned more and slowed down my taper. I eventually dropped only 100 mg and waited 8-15 weeks for my next drop. I had miserable tapers so I needed to go slowly and also avoided tapering during important events. I've been off gab since 12/26/19, almost 4 months now. My PHN is only a minor nuisance, at times I'm totally pain free. However with every taper the pain comes back as part of the withdrawal. The decrease in pain was proportional to the decrease in the drug, so I realized that the pain was WD from the damn drug. There were several weeks in December, before my stoppage of the drug, that I had no pain. However, my memory and cognitive issues still exist. They're much better, but still difficult. Right now (as I'm typing this) my pain is acting up again, but I know it's part of the WD. It will pass. BTW, the pain can feel just like new shingles, even in a different location. It worries me every time (this happens a few times a year) but it's always the WD, not shingles.

After my last drop from 300 to 0 in December, I felt pretty good for about 5 weeks, then I had 6 weeks of hell during withdrawal. Then a few better days, then a week of bad days, then a day or two of bad and then more good. I think I'll be like many others and the WD will still come back, on and off but there will be many, many more good days. Good luck to you.

Hi,

I have been having PHN since 3 years now.

I have been taking 75x2 mgms Lyrica and 100 mgm Tagrital (Carbamazepine ). Initially the Dr prescribe v high doses of everything he could think of tapering up and wanting to taper down but I have been scared to take the v high doses. When I tried to reduce the dose to Lyrica 75 mg x1 per day instead of 2 I went through hell so I am back where I was.

The pain has worsened over time and I haven't worn a shirt since 3 yrs. Luckily I have a freelancers job working from home.

I use icepack but the relief is only as long as icepack is on my back. I also have a TENS machine and take tens once/twice a week buy it doesn't really help.

Babs and all , do you think I should step up the dose of Lyrica?

Ashok, I don't have an easy answer to that. I can tell you that as you taper/decrease these drugs you'll likely go through withdrawal. There's a FB support group called "Lyrica hurts the worst" and I know people who literally count each bead in a capsule to decrease it by tiny amounts. I can also tell you that pain increases during withdrawal so it's easy to think that the pain is from the original situation, yet it's actually the nerves and brain responding to the lack of the chemical in our body. Yes, it hurts, but it's WD pain. The carbamazepine has similar problems associated with it, so both drugs may cause a withdrawal problem. Not the news you want to hear, I know.

If you want to check with other support groups about getting off Lyrica (which is almost like super gab) they can help you more than I. Technically they are two different drugs, but they operate much the same way, but Lyrica is much more powerful. That's why it's harder to get off. You dropped your dosage by 50% which is a huge drop, that would cause a strong withdrawal reaction.

Getting off any of these drugs eventually comes down to what are you willing to put up with? I knew that I decreased the meds, I regained my personality, my joy in life, improved my memory and cognitive skills and felt more like "me". But I knew I'd go through hell to get there. I chose the easiest, slowest path I could, but knew it would still be hard. I'm sorry that you're caught in this conundrum, but you're not alone.

Hi Jon, May 31st will mark 3 years for PHN. I took 75x3 mg Lyrica for a year but I am only 107Lbs and I hated, hated HATED it. Couldn't think or talk straight. Fell asleep with my eyes open in meetings, fell asleep driving several times. It totally sucked to go off of it but i transitioned to Nortriptyline instead. It works okay, not as good as Lyrica but the side effects aren't so bad. I also take Nucynta (opioid) for really bad pain nights, barometric pressure changes, altitude changes, and sometimes just because it helps me fall asleep so i don't have the pain while trying to go to sleep. My pain is still constant, i cry every day over it, but life goes on! I use heat not ice. I LOVE my Mary's CDB with THC salve that I get at a dispensary here in Colorado. I don't use any MJ but the THC is soothing. It has an anti-inflammitory response which helps with I scratch the hell out of my back because the itching is so intense. i liked the Lidocaine patches but my insurance doesn't cover it and the prescription is $600. What else can we share that helps? KWellness

Hi Babs There must be a miss understanding, as you say you were on 2700. gabs. My doctor started me on 1800m 8years ago and that I was lead to believe was the max. anyone could take.and have no side effects with these tabs. Orinally I was on Amitriptyline and pregabalin and then just changed to gabs. I'm now 76 and hoping to get off these. Now down to just 800m. and think I'm at about the same level of stabbing as when taking 1800m.

I'm rather concerned about the WD symptoms that you and others have suffered and wonder, how you decide that the pain you get is either when off the tablets or WD . Perhaps I should go a little more slowly than reducing by 100m per month as I am doing at the present perhaps I should take 2 months?

I know it's about trail and error I should hate to think I may get it worst again especially as some days I can almost forget about it and that is when I am busy doing something, which may be too physical, as when I rest about more that does help. Good luck to you to and hope for better days

The one thing I've learned in the last 4 years, is doctors know NOTHING about gabapentin. They were lied to years ago that it was a perfectly safe drugs with no side effects. They've gotten used to that, dismiss patient's concerns and keep giving it out. There is no "maximum dose" for gab, I've heard of people on 4200 mg. There are guidelines from the FDA as to effective doses for certain conditions, but once a drug is out there, doctors do as they wish it. It's a seizure medication, but should be used with other medication, as it's got a short half-life, it's had some success in some people for shingles pain, small nerve diabetic neuropathy and PHN. The bar's rather low on that, as long as about 50% of the people in the test study show some improvement, they take that to mean it's successful.

As far as getting off the drug, support groups have suggested for years to take at least 4 weeks to drop 10% of the daily dose. Many of us need much longer than that. I found out thru trial and error and learning from others that to lessen my WD symptoms I needed at least 8 weeks, preferably longer.

How did I know that it was WD pain and not PHN, that my PHN was improving? As I dropped, the pain only got worse during withdrawal. By the end of my taper (let's say 10 weeks) I had less pain, better memory etc. than I did at the beginning. My last taper took from Julyl 2019 to late December 2019. By mid December, I had almost no pain. So my working theory was prove right. The pain we feel is real, however it's caused by the nerves/brain/synapses, NOT the original injury or damage. That's why people who are amputees still get pain in the missing limb--it's the nerve connections sending out signals.

If you've been dropping 100 mg per month, I'd say slow that down. The other thing you can see, is that once you're below 1000 mg, mathematically, you'll be dropping by more than 10%, so that's another reason I went more slowly. There are no easy answers. You've been on 3 different drugs that work on the brain in very similar ways, you may have been in a constant state of withdrawal to some degree. If you can read more information in groups like Benzo buddies or Inner Compass you'll understand more. Look up the phrase Waves and Windows Withdrawal and you should find info about what happens to your body with these drugs. During withdrawal we'll give Waves of pain and other WD symptoms, then Windows of better days. It's a long process, but we CAN get better, our bodies are healing.

As to your last comments, yes, distraction can really help us deal with the pain. I also notice more pain when I'm under a lot of stress or more active and aggravate those areas. For me with my back/shoulder/chest it's reaching, bending, twisting and lifting that increases the pain. But generally it's down to the discomfort level. But two weeks ago my pain was back up to a 6 or higher, which hadn't happened in two years. But at the same time, I had in increase in my usual WD symptoms--crying, exhaustion, confusion and depression. It was a rough 3 hours, but then got much better. I used to keep a bit of a list of my physical and emotional problems during my tapers, so I could see the pattern of improvement. That's how I figured out that there were many WD symptoms that would ebb and flow, some that came rarely, or even only once. There are some other very good threads in patient.info, particularly in gabapentin which can help you. If you're interested in reading them. Hang in there John!

I've been in this group for 3 years and still can't figure out which posts the bots allow and which they don't. John, I sent a message to you, I hope you know how to get to your inbox to read it. I wrote a long reply answering your questions, but so far it hasn't shown up here.

Hooray! My long answer was allowed. A year or so ago, the bots which check these posts for problems were willy-nillly blocking a lot of posts. I think we lost some very good, helpful posters due to that. I still miss some of them as they were incredibly helpful to me.