Gab and PHN-Throw something? Cry? Give up? Now what?

Brain and nerves
1

Hi all, many of you know me here, diagnosed October 2016, PHN since then.

Since then I 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, now at 1200, and a prescription anti-inflammatory I'd been on for years. I've been tapering off my Gab for a year, only 100 MG/month as I get really crummy side effects and I now feel trapped. As I got to 1200 some of the pain is worse, as I'm no longer numb from the Gab, I'm also having more anxiety and depression. I've written about this before, but now it's really getting to me and I'm tired of no answers, I'm scared and feel lost. I don't know if I should keep dropping and risk more misery or stay the course. The emotional/brain side effects are almost worse than the increase in pain.

I finally reached out to an addiction center for answers as so few people seem to understand Gab. Several transfers later, they said they couldn't help, no answers or suggestions. I Googled it, no new info, so I resorted to calling my doctor asking what I should do. I'm afraid to taper any faster as 3 pharmacists recommended again that as I seem to be very sensitive but the thought of becoming physically dependent (which I probably am) is terrifying.

My doctor had been very supportive, so I thought after talking to the nurse I'd get some suggestions or insights. This is what I got: I can't be getting side effects from tapering, I'm doing it too slowly and at too low a dose. See a neurologist.

So, add me to the growing list of those let down by healthcare. I KNOW what happens when I decrease these meds. I've talked to drug counselors who know this is real (i also called a relative who does that) and pharmacists. I've read stories here about how terrible this drug can be and how debilitating this condition itself can be. I also believe a neurologist can't do anything to help me. The nurse didn't want to hear that, but we all know it's true.

I guess it's time for a good cry, thanks guys.

2

I'm decreasing, too. From 3600. Now at 1200. My neurologist, who prescribed my Gab, said if you feel anxiety and depression when decreasing Gab it's due to the underlying existence of those feelings and what is happening is that the Gab is no longer blocking them. I have my doubts whether this is 100% correct, as I seem to have more anxiety and depression than I had before taking the Gab, but I'm dealing with it by taking the Ayurvedic adaptogenic herb Ashwagandha, Gaia brand, 3 capsules a day (2 at night, 1 in the morning) to decrease my symptoms. It seems to be helping with both Anx. and Depr. Maybe you are loath to get "on" something else, but this herb isn't addictive, according to my naturopath. Maybe something like that might help somewhat?

3

Hi Babs,  I remember you and have thought about you often.  PHN is a beast and there is no cure!!   Somehow we have to decide which is worse, the addiction or the pain.  I personally will go for the gab addiction.  I never did get up to the amount you take but stopped it at 900 a day due to side effects.  I tapered down to 400 and then tried 300.  The pain increased so I am pretty locked in to 200 twice a day.  Doesn’t mean the pain is gone but tolerable most days.  That plus the Tylenol . Lidocaine cream and sometimes if I have to go out for several hours or wear a bra, I use the 5% prescription patch.  That darn thing leaves a redness and irritation so I can’t wear it  2 days in a row.  They say to wear it 12 hours on and 12 off - no way, about 6 hours at most.  I think I am much older than you which is why I don’t care about the addiction .  Anyway you have my sympathy.  It is life changing and a nightmare!!

4

you need a big hug, too! I hiave no answers, but I know this: every person's body reacts and feels different with PHN. I've been dealing with it since 2013 or so, and it's finally getting better with time. Less and less each day, with occasional flare-ups.

I know that for my body, ibuprofen works far better than acetaminophen/Tylenol for nerve/muscle pain. I don't take it every day, but I take it several times a week, first time in the morning.

I was seeing a chiropractor almost weekly for about a year, and now I see him about once a month. The nerves connect in the spine, and keeping my spine adjusted helps, not only with the PHN but also with head/neck/shoulder stiffness from computer work and from being 62. 

I've been getting a deep-tissue massage (as deep as my massage therapist can go) at least once a month, and it helps a lot, too. It HURTS GOOD. That's the best way I can explain it.

I take Lyrica (50 mg) once a day, but Aspercreme has seemed to work better lately (thanks to this forum for that tip!).

One other thing I've learned in life (maybe because I'm a writer?) is to step back and think as literally as possible about what your body is trying to tell you. When I developed asthma while going through a divorce, and when my doctor at the tiem asked me what was going on at home, I remember saying to her, "I feel like I'm suffocating...OHMYGOD, I feel like I'm SUFFOCATING." And that was the aha-moment that started the recovery from asthma (it's now completely gone). Stomach problems/IBS?....what is happening in life that you can't stomach any longer? Chest pain...why does your heart hurt or feel empty? What aren't you getting in life to full your heart up? Again, maybe it's because I'm a writer that this "listen literally" thing works so well for me, but it works. And I hope you find what works, too. 

Step back and LISTEN to your body. It's not asking for more drugs or prescriptions. It's asking for something more. I hope you find what that is, and I hope you feel better soon.

And GOOD LUCK. 

5

Hello Babs,

Can you please describe your PHN symptoms..... so that I can better understand your plight 

Cheers Len

6

Thank you all. I wasn’t sure how I’d handle it if no one answered me. I should have known you’d step up. I’ll write more tomorrow, I’m beat, but you made me cry, good tears this time. Lenny I will reply with more details.

7

I just had to reach out to u when I read your post.  Please forgive any typos tho because I had shingles on my cornea and retina and can't type for long periods of time without getting worse pain.  I was diagnosed with PHN in Nov. of 2016 and can totally relate to everything u wrote.  I have a primary care dr. That told me it's impossible for me to still have pain!!  I cried for a solid hour after he said this to me 4x n a row as I was telling him this pain is real and horrible!  I do believe it is worth a try to find a new dr. And am n process of doing so.  I can't take GABA any longer , but it sure helped me when I took it. I ended up with severe reaction to

It that sent me to hospital n an ambulance,  my skin looked like someone took a blow torch to it!  I did acupuncture and saw a holistic dr. For healing nutrition.  I really think it helps somewhat. Are your eyes affected?  Is your pain worse in the morning? Mine is terrible upon waking most every day!  Sometimes I wake up crying from the pain.  It has gottensomewhat  better tho...  sending positive thoughts, hugs and well wishes your way!  

8

I believe there's some truth to what your neurologist said. However, the mild anxiety I've had in the past and mild depression were nothing like this. I did have post-partum depression but my thoughts and physical symptoms of racing thoughts and other things I've heard attributed to severe anxiety or a panic attack (but I'd call it more of 10 seconds of fear, not what I've read others deal with) were never like this. The only time I had this happen previous was when I was on Levaquin, an antibiotic. 

Holy Cow (I wanted to say something else). When I googled side-effects of Levaquin, they are almost identical to Gab! Anxiety, depression, brain fog, cognitive impairment, thoughts of suicide, panic attacks, insomnia. Wow, thanks Big Pharma! Well, that actually makes me feel better LOL! I know Levaquin now has a black box warning regarding some side effects (ruptured Achilles tendons). 

I'm glad you're getting some relief from this combination, but I'm very leery of introducing any more substances into my body.

9

Oh Jibby, I'm sorry. I understand the typos, pain and PHN will do that. My PHN is in my torso. It runs along the bra line, but of course extends through the back/shoulders and a bit to the front on the left sternum/breast area. The back is the worst section.

Yes, the pain is real. Can you try Lyrica? It can help but it's chemical makeup is different so you may not have the reaction. I've also heard that your area is one of the worst. I'm lucky that like Sue mentioned above, I can use Aspercreme with Lidocaine and my prescription anti-inflammatory is similar to using Advil. You can take ibuprofen type products along with Tylenol, have you considered that?

When I wake up, sometimes the pain is more present, but who knows what we do at night to aggravate it. I avoid actions such as reaching, bending and lifting which increase my pain. When I do need to do this (which of course I do all day), I do it carefully.

I did call my doctor's office back. This time I got the nurse who knows me, she even recognized my voice. I was very upset yesterday by my doctor's response, which is why I came here. I later realized that it's very likely this other nurse did a bad job of conveying both my concerns and my doctors. I wanted to clear up any misunderstanding, that's why I called back. We had a really good talk. My doc is very good, but he may not have had a patient on Gab this long or have had the level of PHN I had, so my guess is he thought he was helping with: it's not gab tapering causes symptoms, keep dropping and see a neurologist. Too bad our medical professionals don't know more about PHN and it's treatment, but at least we have each other, right?

10

I'll pass on that hug Sue, it would hurt to much!lol but the thought was very much appreciated. Where is your PHN? I'd love having a massage, but as it's in my back and chest, there's no way. I don't scratch my back either, as much as I'd like too, as it makes it worse. My hubby used to give me terrific back rubs and back scratches. Yet another thing that PHN took away, dang it!

We seem to be on a similar treatment regiment, I don't know why doctors don't suggest anti-inflammatories, I feel sometimes mine (Relafen/nabumetone) helps almost as much as the Gab does.

Your thoughts about pain and the mind are, well interesting?? But I honestly have to say a bit too Freudian and/or new age for me. BUT there's truth to what you say. There's such a mind/body connection and it would help explain, because over-doing it physically, why some days it's worth than others.

I appreciate so much that you took the time to reach out and compose such a detailed, positive message.

11

My original outbreak was just to the left of, and below, my right shoulder blade. Like someone stabbed me with a knife. It was a weird pattern that also showed up on the back of my right armpit, my right elbow and my right wrist (little tiny lesions there, but the big patch on my back).

Time really HAS lessened a lot of the pain, because I remember feeling -- 6-8-12 months out -- that I wasn't sure HOW long Ii could keep living with the pain, neck stiffness, etc. It's now to the point that I"m not aware of it 24/7 (and I used to be). 

As for massage, maybe I'm a glutton for punishment, but I have asked my massage therapist (I "heart" Ronnie) to go as DEEP into my tissue as he can, and hold it there (with his palm/elbow, whatever) while I move and stretch through the tightness and pain. It has helped TREMENDOUSLY, even though it makes me cry sometimes while he's doing it. I've actually had three weeks post-massage where I honestly did not feel ANY pain or tightness at all (and that's with the Lyrics and aspercreme regimen daily, with Advil when I need it).  What's weird is that HE can feel little nodules of really tight tissue and knots, almost like little hard worms, in the very spots deep underneath where my original outbreak was. Like my body's storying that information (which it is, in the form of the virus). Maybe the massage wakes it up, but I'm hoping the more that he/I go after it, the less it will be a problem over time. 

I used to be a newspaper reporter who wrote about health issues, but I never wrote about shingles. Now I wish I had, and I wish more doctors would pay attention to it and research it. It seems so much bigger than a "virus." 

Good luck, and (gentle/non-painful) "air hug" back at you!.

sue

12

Hi Jibby--How was your experience with acupuncture? I'm considering trying that, too. I'd love to hear how it worked for you.

Thanks!

13

Some symptoms are fairly common to all of us, others vary depending on the location of the original shingles infection and because we're all different. I copied this from a website, to make it easier for me: "severe pain that continues for more than one to three months in the same place that the shingles occurred, even after the rash goes away, burning sensation on the skin, even from the slightest pressure and sensitivity to touch or temperature changes."  The last part is called allodynia, so some people can't handle a breeze on their skin. For me, on bad days, it's pressure on my back from clothing.

But beyond that there's fatigue and many types of pain. It can be sharp, searing pain, which may be relatively brief, I liken it to tearing off a scab (disgusting thought, but a good analogy). Or an itching, burning pain. It feels like a really bad sunburn that someone scrapped hard with a comb or as if someone slapped you on the back. But the pain lasts. There's also a deep, pressure ache which for me is caused by bending and then I feel it in the chest, as if someone had hit you in the chest.  Tho in theory, my pain is around the nerve that matches the bra line, the pain and/or burning is felt almost anywhere in my back, on both sides, upper and lower, but worse on my left side. It can also feel like I've got swollen glands under my arm. TMI, but many of us with this area can't wear a bra, and even the weight of the breast causes and achy pain. This may be a constant discomfort, or can ramp up to an excruciating pain. Generally, as time goes on, the severity of the pain and the types of pain decrease. If you're lucky.

Sorry you asked?

14

Hi Ruth, I've been wondering how you've been doing too. It helped a lot to see that you too had to adjust your meds. I don't think doctors realize that this is NOT a short-term problem and that we'd love to get off the meds, but if we're still in pain, it's not a happy proposition!  I hope you can read some of the other replies I have to fill you in. I AM better today, and that may be due in part to the caring comments and good thoughts coming my way. My doctor's nurse called back. He did say he's never had a patient go thru quite the same situation. But he realized that some people may not have had the same reaction I did or that if they did, didn't realize it was from the meds or that they just never called him. I appreciate his thoughts, as I said, he's a good doctor and kind man, so I thought there was just a mis-communication. Ironically he also suggested seeing a therapist, but as I mentioned, I called and there's a 6-8 week wait. Doncha love it?! 

You mentioned my age, well Sue and I are both 62, I think you're about that same age. I'd call it the age where we expected problems, but thought we still had a good 5-10 years. I do look 5-10 years younger than I am, and always had that mindset. Now I feel 10 years older. I told my husband, that's as if I've aged 20 years in the last two. 

I've shared my love of ballroom dancing and how my lessons were my refuge and healing source. That's why it was so hard when my brain started going totally bonkers thanks to the Gab. I was fascinated, in a macabre way, to see that the Levaquin which caused a panic attack (I think, I'd never had one before or since) acts the same was as Gab. So, I wish I knew which specific chemical is doing this! If I wanted LSD I'd ask for it, thank you very much!

I will taper again in a few days, but I'll just be more diligent on preparing and dealing with problems as it comes up. However I am NOT tapering around the time of my yearly family vacation to FL. I am not going to ruin that.

BTW, I don't think they call this an addictive drug, but it can cause "physical dependency". Does that make us all feel better?

15

Maybe I should try that massage, but, it sounds a bit scary right now. I've had shoulder issues so my hubby would work that area REALLY hard and it helped loosen it up, but that was more of a physical issue. Funny you mention those "lumps". I've often had a sensation of swelling under my arm pit, near my left breast, maybe there is something to that.

Funny that you used to write about health issues, I was in healthcare (I think I said that) for 30 years and diagnosed both my father's and my husband's shingles. But as I had no rash, just deep pain like a pulled muscle for 12 hours, we never realized what it was. Plus I'd never heard of PHN. I believe that there are more of us with PHN than with ALS or MS, if I've done the math correctly, but we're this invisible group, aren't we?

I'm just glad I'm feeling better today. Eight bad days in a row was ridiculous.

16

Lenny, I thought of a few more (I'm on a roll now). Have someone take their knuckle and rub it hard down your spine. Put a large bandage on your back, then have someone tear it off. Or picture little demons with pitch forks under your skin stabbing you OR chipmunks gnawing at your shoulder blade, from under your skin? 

Sue, you're a writer, do you have anything to add to this creative writing exercise? Hey, either you laugh or you cry. I've done too much crying the past week, I'm ready for some laughing.

17

Hi Babs,  I was going to ask you but I forgot.  Were you able to go back to ballroom dancing?  I hope so as you seemed to enjoy it so much.  Speaking again of ages, I said I was pretty sure that I was older than most of you.  I will be 85 next month have had this Awful PHN for 1  1/2 yrs.  I was Very active at the time.  Gave up skiing 3 years ago after a knee replacement but still snowshoeing around our gorgeous mountains and hiking a lot.  This has totally changed my life as I’ve said before.  I guess looking at the big picture I was fortunate not to have this at your age and know it may never go away.  You know some people have even had a recurrance.  I am considering getting the new shingles shot which is said to be much more effective.  The only thing holding me back is that there is no data being studied or in the clinical trials on people with PHN.  I reached out to the CDC and also Glaxco for info and the consensus was go for it!  Comments anyone?

18

Challenge accepted!!

I've often described the right-side tightness that I feel as wearing a wetsuit on half of my body that's one size too small. Everything feels like it's been wrapped in those elastic bandages really really tight.

(I wish it WOULD escape from my body and run away).

Some days, it feels as if someone has taken a sock filled with sand and just whacked it repeatedly it against my shoulder blade and my upper forearm. Deep achy feeling.

And other days, the throbbing pain feels like that critter from the last scene in "Space Balls" (one of my all-time fave movies) is inside my body, clamoring to get out. 

It's here, for grins of the day: 

If I think of any more, I'll let you know!

sue

 

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19

Yes Ruth, I'm taking lessons again. I had to take a break in November because of the rib injury, then we had a break during the Holidays, so I was pretty rusty when I started again in January. I had some good lessons, but this past Sunday is when I had kind of a meltdown because of the Gab. How can I be in the midst of something that brings me so much pleasure, yet as I was dancing, all I wanted to do was start crying? Got in a corner, curl up and start crying. My thoughts were racing and I couldn't concentrate. I held it together, but my instructor thought it was because of the difficulty of the figures we were working on. I had to finally tell him, and I started crying. We're in a public area, but no-one could see me. He knows what I'm dealing with as he had PHN and stopped the Gab as it was so awful. That's when I realized this was getting out of control.  This from a woman who could go YEARS without crying. I'm rather unemotional, analytical and think tears are stupid. Oh yeah, that was the old me.

85, I am so impressed! I've only done Cross Country skiing, and this was the first time in about 6 years we had decent snow, but I can't now. I carefully go on my Nordic Trak for a few minutes, without using the arms. I was very active too. When this happened we were in the SW touring the National Parks and Monuments. I was hiking and walking up and down all kinds of trails and savoring every minute of it, not knowing what was lurking beneath.  May I ask where you live? I thought it was MI, are you in the UP near the Porkies? Or is that someone else in Michigan. I need a spread sheet.

As far as the immunization, I have no advice. I won't get one even tho I urge others to do it. I had a bad reaction to a flu shot (similar to Guillian Barre--which causes paralysis) so the doctors don't want me to get one of those. I don't know if it carries over to all immunizations.  I know it's been very effective, however, I don't know if I'd personally trust it. After my levaquin and gab problems, I'm starting to distrust meds. I never thought I'd say that, after working in healthcare. I totally support immunization, but this IS a very new medication, tho it's been successful in other countries.  Hypocritical or just scared and confused? I think the latter.

 

20

Hey Babs,

i live in Colorado where I used to climb mountains!  Sad to say, the PHN has done so much to decrease quality of life.  I can hardly bear to excercise anymore as any stretching or turning hurts!  I know I have to keep moving or I really lose a lot more.  I can only hope someone will take this nerve pain and really study it and come up with something to help.  I think one of the reasons it has been understudied is that it is not life threatening although after reading some of the posts of people that have the PHN, I would wonder if they wish it was!   Yes, it is a beast!  Take the best care of yourself as you can and I pray it will get better with time.