PHN disappears as gab also disappears
Posted , 2 users are following.
More than 3 years ago I developed shingles and didn't get the antivirals. Long story short, after 3 years of the hell of pain from PHN (post shingles pain) and gabapentin, I am off gab.
As I very slowly tapered gab, my pain declined also.I thought that odd, shouldn't it get WORSE? Actually it did, but that was only during the withdrawal portions. When the WD was done, my pain was less than when the taper started. After a year, I realized this wasn't a co-incidence and hypothesized that the gab was creating the pain. Yes, it was real pain, but no, it wasn't from the PHN. I wasn't sure if this was accurate until a few weeks ago.
I had last dropped from 400 to 300 in July and now I was down to only 300 mg (100 3X a day) and my pain was GONE!That lasted several days, then I had VERY mild discomfort and then pain-free again. My theory was correct. The pain was drug induced. I realize I may still feel twinges, but more likely, I'm done with PHN.
I've been off gab almost two weeks now, so I'm going through my typical WD--fatigue, confusion, insomnia and increasing discomfort. In a few weeks I expect the discomfort to escalate to sporadic pain, as that's the pattern I've seen for 3 years. I can't predict this will be your outcome too, but I'm realizing how much these drugs harm us, particularly if you're on multiple drugs. The changes they cause to our CNS can be debilitating and the withdrawal may lead us to think the PHN is still there. Yes, it may be, but many DO have at least or even nearly total relief from PHN. There is hope.
0 likes, 2 replies
john09650 babs99203
Posted
Hi Babs That very interesting what you have experienced as I have had PHN for 6 yrs following shingles. Unlike some people, I do not feel I am suffering so bad that I cannot get on with life, yet it is debilitating stabbing on my side off and on as does the ache across my abdomen,it's always there. I am on Gabapentin 1800m a day. Like yourself I do not like taking tablets and tried reducing them by 100m at a time and got down to 1200m per day. and found there was no real difference in the level of pain than taking 1800m but for some reason gradually went back to taking my full dose. But what you have written I feel I must try to reduce again and possibly persevere and test my result.
Having said that I have just come across Qutenza patches, via a pain clinician, which is applied only by these pain clinics under NHS wondered if any one else has heard of them or tried them?
Ever hopeful
Jon
babs99203 john09650
Posted
Hi John, when I first had shingles, and then PHN I had read that it could last the rest of my life (which it can). But then I started to meet and hear of people who had their PHN almost disappear and only rarely flare up under great physical or emotional stress. That gave me hope.
As I decreased the gab, I assumed my pain would worsen, instead, if you were graphing it, from the beginning to the end of the taper, the two graphs were the same! As I mentioned, my withdrawal had increased pain, but by the time I was feeling better and ready to decrease again, I was in less pain.
Getting off gab is a personal choice, but there are many problems with it you may not be aware of. It can affect your triglycerides (mine were triple what they'd been for 10 years), cause decreased bone density, cause tinnitus, create heart arrhythmias and other hidden problems. Cognitive issues like memory issues, brain fog and confusion can remain after we're off the drug. If it doesn't help, there's no good reason to stay on it. If you want to decrease and get off it, support groups recommend 10% or less decreases over 4 weeks or more. Most people have some type of withdrawal, but it's worth it to be free of this drug.