I am a 79 years old male. In Sept. 2011 I had a severe shingles attack. It was a 4 to 6 inch band that extended from the center of my chest, under my right arm to the center of my back. My primary care physician said it was the worst case of shingles he has ever seen. Since then I have been suffering from chronic PHN pain. I have visited six different specialists including a dermatologist, two neurologists, two anesthesiologists, and an infectious disease pain management specialist. I have visited the Vanderbilt University Interventional Pain Center, Anesthesiology Pain Division; Duke University Medical Center, Pain and Palliative Care Clinic; and the Mayo Clinic Pikeville Medical Center. I have been prescribed fifteen different chronic neuropathic pain medications including antidepressants, anticonvulsants and opioid pain medications intended for the management of acute complex pain; all to no avail.
I also participated in a double blind pain management research study to determine if an investigational drug developed by Syntaxin Ltd, a UK company, in partnership with Allergan to relieve PHN pain is effective. I received 65 injections in the affected areas of pain. Although some experienced complete pain relief, I must have received a placebo because it didn’t work for me.
In a desperate attempt to find a cure for the relentless PHN pain I experience daily I decided to try the drug combo of anticonvulsant gabapentin and antidepressant nortriptyline. Dr. Ian Gilron, M.D., M.Sc., FRCP(C), a professor at Queen's School of Medicine and anesthesiologist at Kingston General Hospital in Ontario wrote “This trial shows that the combination of an antidepressant and an anticonvulsant drug seems to be superior to monotherapy for neuropathic pain,". (Published in The Lancet, medical journal September 2009.)
For the last 10 months I had been taking 800mg gabapentin three times a day with minimal side effects, i.e. drowsiness. To precisely replicate Dr. Gilron’s study, I weaned myself over a two week period to 400mg gabapentin three times a day. I maintained that level for two weeks before I started taking nortriptyline. My plan was to take 25mg nortriptyline once a day for two weeks before increasing it to 25mg twice a day.
After taking the first 25mg nortriptyline table with the gabapentin I started experiencing mild side effects including dizziness, light headedness, blurred vision, and dry mouth. I stuck it out for ten days when I had no choice but to stop taking the nortriptyline. The side effects became unbearable. The dizziness and light headedness became so severe I could hardly walk and fainted on two different occasions. I became extremely drowsy. I was sleeping 16 to 18 hours a day. The dry mouth resulted in an extremely bad sore throat. It got to a point where I had difficulty swallowing water. My blurred vision also got worse. I could hardly read a newspaper or my computer screen. It took about a week to get the nortriptyline out of my system and get rid of the horrible side effects I was experiencing from the combination of gabapentin and nortriptyline.
I am now back to where I started, i.e. 800mg gabapentin three times a day. I have good days and bad days. On a good day my pain level is typically in the 2 to 4 range. On bad days my pain level is in the 5 to 9 range. I think the gabapentin is helping me some; but it’s difficult to precisely saying how much.
I was wondering if anyone also experienced the extreme side effects from taking both gabapentin and nortriptyline as I did. Were you able to overcome it? If “yes” how
Postherpetic Neuralgia - Did taking combo Gabapentin and Nortriptyline help with your pain?
- Asked
- 7 Oct 2015 by PaulSchmidtJr
- Updated
- 2 Mar 2016
- Topics
- pain, herpes zoster, neuralgia, gabapentin, nortriptyline, postherpetic neuralgia, male, chest
Responses (3)
Hi Paul~
Can I ask you a question first before answering with my experience?
Why did you have to titrate down to 400 mg of gabapentin before starting nortriptyline? Did your Dr. tell you to do this or ?
I am asking this cause currently I am on 600 mg of Gaba, four times a day and wasn't instructed to do this. I just started the first dose of nortiptyline yesterday (last night), it was 25 mg. I found it VERY difficult to get up this morning and function. My brain was in a fog, my legs/feet felt like they weren't there, walking was difficult as I couldn't feel them when they came in contact with the floor.
I have severe Small Fiber Neuropathy in both feet/legs/arms/hands, and now in my face. Along with that has come, autonomic, sensory, and motor neuropathy. It has affected my bladder, stomach, heart, and now vision. I can only walk short distances, sit in one position for 10-15 mins, standing is the same.
Yes I found the exact same thing. That although the gabapentin and noratriptlyin really helped me pain wise but also rendered me useless. I couldn't work was barely functioning at home. Literally falling asleep standing up. I didn't even get any higher than 25mg of noratriptlyin. How I wish I could feel like me again ! Like you I have tried everything and yet continue to fall back to the gabapentin as only that offer any bit of relief , continue to suffer daily. Yes good days and bad but are always with me. I wish you luck on your quest I continue as well. I am a 40 year old mother who can barely keep it all together. I truly do feel your pain.
I don't know what noratriptylin is, but I was on a timed release OxyContin with gabapentin. Stayed sleepy. Now on Lyrica and and regular OxyContin 3 times daily. Much better, though not ideal. My question is... Will it ever go away?? I'm two years in, but have NEVER HAD SHINGLES! So, has everyone hear had shingles prior to the PHN?
Hi Bailey~I'm sorry to hear that you also found no relief. I agree, the Gaba offers some relief, and I also take Norco for the extreme daily pain. This last year it has gotten so much worse, and now with the onset of cold weather, its not going to be fun. I have older children but am taking care of my 4 yr old grandson while my son works, he is super active and wears me out so bad, but my son needs my help and I would do anything for my grandkids, as long as I am able to... the day when I won't be able to is coming way too quickly for me, so for now I will just suffer through the additional pain and do what I can. I know you can relate, having children at home also. It's so hard for them to understand why we can't do things we used to and why we are in pain all day long. Hugs to you and I hope you have a good support group where you can vent when you need to... there are alot of them on FB, if you need some links let me know.
Male50~you don't have to get shingles to get PHN, you can get it numerous ways. Meds react differently with each person, we just have to keep trying different ones until we find the right combo for our pain needs. I was on Lyrica early on, but had bad side effects, also was on Oxy, but switched to Norco, found it worked somewhat better.
Unfortunately, this will never go away, it affects the nerves, and in time they die off and won't regenerate. Have you gone online to look up info about this? If you need any help or want some links to support groups let me know, I will help you as much as I can. It helps to know you're not alone in this, and sometimes venting and talking makes you feel alittle better. Take care and just do what you can do one day at a time...
Unfortunately, I have not tried that particular combination. I was given amitriptyline 50 mg, 3-4 tabs daily, my option. Now I'm on pain med only as nothing on the market today has relieved my phn. Worse yet, my shingles broke out in a particularly "sensitive" area. I sit on that area. It has been a life-altering event, to say the least. I can't make plans ahead of time anymore as I never know when I'll have a really bad day. My pain levels are 2 to 8, at any given time. I have tried acupuncture, essential oils, homeopathic concoctions, etc. with no relief. I feel so bad for you as you have suffered even longer than I have. I got mine in April of 2014. But keep trying to find a solution by getting on blogs like these. One of these days, we may find a cure. My next step is a caudal injection. Not sure if I spelled that right, but someone suggested it. I have to wait for the first of the new year for insurance to kick in. I'm keeping my fingers crossed.

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