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

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.

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?

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.

I'll pass on that hug Sue, it would hurt to much! 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.

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

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.

Wow!!! Now that is the second time a fellow PHN patient has talked about what their masseuse feels and how they describe it. My mom is my "masseuse" and she feels them on my back, too, exactly where I had lesions. I myself can feel these little hard nodules in the front where the lesions were under my breast.

When I have bad pain that is out of control, I use a mix of a 5% lidocaine cream I get from a compounding pharmacy as well as a cream they make for me that's got the following in it: gabapentin, diclofenac, flexoril and ketamine. Remember it's topical so don't freak out when you read ketamine🤤 But when Mom puts the cream on and hits these nodule areas, I cry and can hardly breath. Holy cow 🐮it HURTS. It was explained to me that what happens to the nerve with a shingles strike is akin to a stroke. Some people, with time, will get back almost all deficits with rehab after a stroke; some will suffer from the assault for life. 🤕Same with PHN. Another way it's been explained is that the nerve is like a telephone cord that your dog chewed on. Maybe these nodules are areas of the "cord" where it's been traumatized. The massage must open up and facilitate the blood flow to these areas, thus allowing access to the MANY components of healing that are required. Even if it just facilitates blood flow, oxygen uptake, and access to our bodies own pain/inflammation killers, the massage seems intuitive, hu? I don't get massages because I just can't take that pain. But it was just too much of a coincidence about the small, hard nodules for me not to tell you that you are right on the money. 💆???💆???

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?

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.

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

Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

You must have had a link to Space Balls, they took it out. There's really high rules for what you can't post here. Don't add links, that could get the whole post removed. I'm glad it was allowed to stay up. I've had some that were deleted and I never figured out why, same with other people's posts.  Chipmunks, aliens, it may sound silly, but it helps to see what others have also. And it's odd that sometimes it's just a flash or stab of pain, other times, it lasts. Right this second, I have that rolling wave of itchy pain across 1/4 of my back. Sitting and typing is really NOT a good idea, but I do it anyway.

I noticed that (and now I know!). But you can find the 1:48 minute video by going to YouTube and searching for "Spaceballs 1987 HD Alien Scene John Hurt Hello! Ma Baby - YouTube". If nothing else, it's worth a grin!

A.s I can't get in to see a therapist until April(!) I guess I'll use that to improve my mental health LOL! Thank God I'm better now. I will believe that I am through the worst of this tapering. If I'm not, I'll remember that it will get better