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Old 06-21-2012, 12:11 PM   #1
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PHN pain

I suffered a bout with shingles in January 2012. In my left eye, forehead and top of head. The pain was agonizing then and it continues to be so severe, it is debilitating. I am taking Lyrica which initially helped a great deal but caused me to gain 22 pounds. I cannot go out in the sun--it trigger an attack of pain that takes my breath away.

Needless to say-- my life has really narrowed. I am very depressed and really see no end in sight. Before this happened, i was an avid swimmer and boater as I am lucky enough to live 5 minutes from a spectacular bay beach. I cannot go to the beach any more. When it is a beautiful sunny day, I am sitting in a dark air conditioned room with an ice pack on my head.

Everyone tells me it would go away--- eventually. Eventually seems like forever. I live in the Northeast and summer is very precious to us.

Does anyone out there have any suggestions for pain/recovery? I am desperate.

 
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Old 06-21-2012, 04:17 PM   #2
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Re: PHN pain

I know several people who have had shingles lately - within the last year - and they all took Valtrex for it and had great results. But they started on it on day 2 or so and it does work better when started early on. Lyrica is not an anti-viral so am surprised that's all they gave you. You might talk with your doctor about changing meds.

 
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Old 07-29-2013, 04:09 AM   #3
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Re: PHN pain

Hello Samcat,
I also had shingles in March 2012. From the crown of my head, down the entire right side of my face, in my eye, in my nostril and mouth. I am now suffering with PHN which includes TN due to the occular involvement. Since we are in a similar time frame, and you posted awhile back, I am wondering how you are doing. I am still struggling with pain management (Gabepentin and Vicodin for breakthrough). I also have always enjoyed the outdoors, but am now restricted by weather and temperature conditions and my pain level. It is frustrating.
I hope you are feeling better.

 
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Old 01-09-2014, 07:27 PM   #4
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Re: PHN pain

Hi PHNhurts,
I'm currently suffering from PHN after a Shingles attack on the forehead and scalp in March '13. You last posted in July 2013 which is when I began suffering. I am currently on Gabapentin and nortriptyline.

I am wondering how you are feeling? Are you on the mend?

 
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Old 01-10-2014, 02:50 AM   #5
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Smile Re: PHN pain

Hi Jenny: Thanks for your query. I am doing somewhat better. I made a second visit to the University of Wisconsin/Madison Pain Clinic in Nov. 2013, referred by my primary physician. I was having so much pain at night, that I was only getting 3 to 4 hours of sleep per night , for months...and it was taking it's toll. The pain doctor titrated (gradually increased) my Gabapentin dose (I had a bad time with side effects if increased too quickly). I am now taking 300mg Gabapentin 5 times a day. This has helped with the nighttime pain, and I am sleeping better. I still take Vicodin for breakthrough pain, which happens nearly daily. The Pain Clinic doctor referred me to a Pain Psychologist in the group. I may have freaked her out when I said the "D" word, that is, I said that all this pain was "depressing". The psychologist determined that no, I am not clinically depressed. However, since I am a creative, imaginative person (artist) she felt that I might do well with self hypnosis as a means of coping and reducing stress. She started me with recordings to listen to: "Autogenics", first: Guided Relaxation, second: Guided Imagery, third: Beginning Hypnosis. I must say, that I enjoy listening to these recordings. They don't necessarily relieve pain, but they have made me feel better in general. More relaxed, and I feel better about by situation. I don't feel "guilty" about not getting things done when I am in pain. I hope this helps, and I hope you are feeling better and/or find appropriate help.

 
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Old 01-10-2014, 02:16 PM   #6
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Wink Re: PHN pain

Thank you, PHN, for such an informative reply. When I read about your experience with the Shingles rash and subsequent PHN, I feel as if I'm looking in the mirror. We both had the outbreak on our face- thankfully mine stopped at my inner eyelid, but extended back to the crown of my head. I too, was in excruciating pain and took Vicodin while I had the rash. In July, with the onset of PHN, I felt as if I was ill all over again. The pain has been terrible. I tried Lyrica but unfortunately had a reaction to it. My PCP was reluctant to try Gabapentin, fearing I'd be allergic to it as well. So the best he came up with was nortriptyline, 50mg, this was back in August. Unfortunately, I am only too familiar with clinical depression. I have suffered bouts in the past and have been able to control it with medication, but it appeared that the PHN set off another episode, which the nortriptyline has seemed to help, but only to a point as it seems that my mood improves when my pain is better controlled. I switched doctors in the fall, and after a miserable Christmas, decided to go on Gabapentin, as of December 31. It seems to be helping, I am taking 300 mg three times daily. I could probably use an increase in dose as I feel breakthrough pain. I was wondering how fast you titrated your dose? Overall I seem to be tolerating it with only difficulty in urinating and some swelling in my chest but that could be due to the inflammation from the PHN. I have considered going to the Univ. of Michigan's Pain Clinic as I live only 45 minutes from Ann Arbor. It sounds as if you have found some great resources at U of W's center. I am also seeing an acupuncturist for the pain, but am only on my 5th visit. It has thus far helped somewhat but not completely. I apologize for my verbose reply, but welcome trading our experiences with pain management treatment so that we both get back to our healthy selves.
-Jenny
P.S. I am so glad to hear you are getting some relief and sleeping better.

Last edited by JennyJ; 01-10-2014 at 02:39 PM.

 
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Old 01-11-2014, 03:32 AM   #7
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Re: PHN pain

Hi Jenny, my reply will probably be long, but I will try guide you through my experience, and you can take from it what may help you. Four months after my rash was gone, I was still in a lot of pain and my PCP diagnosed PHN, started me on 300 mg Gabapentin once before bed. She was being very cautious. It helped, but not enough. She sent me to UW pain clinic the first time Aug. 2012. The pain Dr. increased Gabapentin to 300 mg three times daily, immediately. For the first 6 weeks I thought I would go crazy. BAD side effects, too numerous to list but the worst were dizzyness, forgetfulness and short bouts of terrible depression and hostility toward my spouse. I was upset, as the Gab. was helping with the pain, but I was not sure I could continue with it as the side effects were so bad. Upon researching, I found that the side effects diminish significantly with use, usually disappearing after about 6 weeks. I decided to just gut it out, as there was a light at the end of the tunnel, so to speak. I stayed on that regimen for some time, just accepting the breakthrough pain and taking Tramadol. Tramadol, after three weeks gave me full blown, awful insomnia. PCP took me off Tramadol, and substituted a low dose of Vicodin and increased Gabapentin to 300 mg 4 times a day. (I had a few side effects with that increase). I saw my PCP again in Sep. or Oct. of 2013, seeking more help because the pain was still debilitating, I wasn't sleeping well, and I was definitely depressed about my situation. I hoped there was more that could be done to help me. PCP referred me for another visit to the pain clinic. Pain Dr. mentioned trying Lyrica, but I did not want to go through another bout of side effects with a new med. So, it was decided to increase the Gabapentin. Pain Dr. titrated the Gabapentin as follows: She gave me an Rx for 100 mg Gabapentin, for the first two weeks, I took an extra 100 mg before bed/ Next two weeks, 200 mg before bed/ Next, 300 mg before bed. The increases were to be done only if I had no side effects, which thankfully, I did not. So, I am now on 300 mg five times daily. Pain Dr. also referred me to the Pain Psychologist. I've had one visit and have been working with the Autogenics recordings that she gave me. I am at a crossroads at the moment, as my health ins. provider went out of business in Dec., I had to go to the Marketplace.gov for insurance. Wisconsin does not have a lot of choices for providers, and I had to choose a company whose network does not include UW Health. I have 2 more appts. with the Psychologist, and I would like to see her again, but have to decide if I want to pay for the visit out of pocket. The University Pain Clinic helped me a lot, they have the experience of handling lots of chronic pain cases. If you have the opportunity to go to a Univ. Pain Clinic, I would reccomend it....can't hurt, could very well help. I still have pain, but with the better sleep, and the Autogenics I feel that I am coping better with it, and have a lighter, more cheerful attitude. When I have a lot of pain, it's "time out", do the relaxation and mental imagery and wait for it to subside. My husband has been understanding, as he has severe Rhuemetoid Arthritis and has his own pain issues. I am hoping that you find more help and relief.

 
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Old 01-12-2014, 08:03 PM   #8
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Re: PHN pain

Thank you again for sharing your experience. I believe you made the right decision regarding Lyrica. I've heard from my current doctor and from my Mother's doctor that Lyrica is not a "good" medicine in that it is very difficult for most people to tolerate. I have a call into my doctor regarding increasing my dose of Gab. I appreciate knowing how to titrate the dose gradually, it's good to hear you are better tolerating the medication. I find that I feel more pain when I am more active. Have you found this to be true? Additionally, is your pain limited to the areas where you had the outbreak? My pain at first involved the crown of my head (location of the rash) but it is now a burning pain along my spine and the back of my neck. I also have a wicked pain in the side of my neck. It's as if my PHN has traveled. Sometimes we don't know if the treatment is worse than the cure. I was prescribed Tramadol too but stopped taking it as it can negatively impact one's mood. I was reluctant to try Gab for that reason, but the pain was becoming so intolerable and was affecting me anyway, that eventually taking the Gab became the lesser of two evils. Thank you for the information on the Autogenics. It may prove to be more helpful to me at this point than the acupuncture. I apologize for my writing if it is somewhat scattered. As a result of this pain, my brain isn't nearly working to its full capacity.

Last edited by JennyJ; 01-12-2014 at 08:14 PM.

 
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Old 01-13-2014, 02:55 AM   #9
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Re: PHN pain

Hi Jenny, remember that my side effects from Gabapentin during my initial, and large dose increase were HORRIBLE. This last increase was very gradual and was closely monitored by the pain doctor. I was to report any side effects immediately. Thankfully, I made the transition to the higher dose smoothly.

I know what you mean by being "scattered" when the pain is so bad. Same here, although I am remembering how I was a year ago. I feel that my pain management is much better now. I still have breakthrough pain now, that lays me out, but it is not the all day, all night ordeal that it used to be.

Reagarding the location of the pain; it is ONLY in those areas where I had blisters. You should talk to your Dr. , or a pain specialist about this "migration". It is my understanding that the PHN is a result of nerve damage or scar tissue around the nerve WHERE THE SHINGLES VIRUS WAS.

My pain is not necessarily worse when I am active. There are some definite triggers, and then sometimes it seems random. Triggers : Being out in the sun and having my face sweat; having stray hairs touch my face (I no longer wear bangs, barrette my hair back and often wear a bandana); cold air, wind, bright light hurts my eye, wearing my reading glasses for any length of time, stress.

Again, consider going to your University Pain Clinic. Although I really like my PCP, she is not equipped to deal with this, that's why there are specialists. At the Pain Clinic, they did not just throw drugs at me. We discussed, they listened and they gave me a more holistic approach to dealing with pain including going to the psychologist, discussing diet and excercise. Best Wishes, Pam

Last edited by PHNhurts; 01-13-2014 at 03:04 AM.

 
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Old 01-18-2014, 11:58 AM   #10
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Wink Re: PHN pain

Hello,

New to the board. I had shingles in right side of my head in Nov 2009 and have been suffering with PHN ever since. I am currently on Tegretol and Gralise. The latter being a new extended release form of Gabapentin. I have very little side effects in the beginning unlike with regular Gabapentin. The two combined work to a degree. They keep my daily pain level under the debilitating threashold. I also just started a compounded gel which consists of Gabapentin, Amyltriptamine, Baclofen, and Lidocaine. Just started it and I think it's helping some. I still eat BC powders to take the edge off. Bad for me I know. Here is a list of all meds I've tried:

Indomethacin
Verapamil
Depakote
Inderal
Imitrex
Maxalt
Prednisone
Opiates
Synthetic opiates
Nucenta
Neurontin
Elavil
Cymbalta
Nerve block
Acupuncture
Tegretol
Baclofen
Gralise

It's been a battle and I know you all can relate. I am now looking into the idea of some type of radio frequency ablation. Actually a pulse ablation as the former, commonly done for back pain, would be dangerous to do on my head.

The last 4 years have been a life changer but I'm still standing and living almost normally. I work, exercise, and play in a band. Hang in there one day at a time and seek professional help to help deal emotionally if you need it. All for now.

Scott

 
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Old 01-19-2014, 03:00 AM   #11
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Re: PHN pain

Yikes, Scott...since 2009, eh? (I'm from Wisconsin) All kidding aside, I kept reading on line and such that PHN often resolves after about 2 years, or can last a few months, or years or forever...the prognosis is all over the board. In the beginning, I just kept "gutting it out", thinking that it would go away. I will be at the two year point in late March 2014. I've given up on expecting this to go away, and have geared myself and my psyche to accept that I may have to live with this for a long time. I don't want to take a lot of drugs, and my regimen seems pretty effective at this moment. Gabapentin, low dose of Vicodin, and Autogenics. Last time I saw the pain specialist there was talk of trying other drugs, including Lyrica and amytriptiline, but I didn't want to add more drugs if an increase in my Gabapentin dose would work. There was also some talk of a laser treatment (?) for the TN, but it's still too early to consider that. If this PHN resolves and goes away at some point in the near future, that will be the cherry on the sundae!! You are right, Scott, this is a life changer. I'm glad that you are relatively happy with your current regimen. Anyone who reads your post can see from your list of drugs, that this affliction can require a lot of trial and error on the part of patient and doctor to find the right drugs, doses and combinations for the individual case. Seeing a pain specialist and a pain psychologist at the University Clinics (U/Wisconsin) really helped me, as my PCP just didn't know what to do next with me. Happily, she recognized her own limitations and sent me off to those who know how to deal with this. I hope you continue to be happy with your current regimen of drugs, please keep me posted on your progress, as you are about 2 years more along on this than me. In particular, let us know if your PHN resolves and goes away....I'll do a happy dance with you. Pam

 
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Old 01-22-2014, 06:35 PM   #12
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Re: PHN pain

Thanks for the post Pam. If I can keep manic depression at bay I'm winning the day. Gonna make a call to a top notch Neurosurgeon group to see what they may have in mind for me at this point. I am just not satisfied living with a 50% reduction in pain. Gotta keep searching while at the same time try to find acceptance.

Will keep posting.

 
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Old 01-23-2014, 12:36 PM   #13
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Re: PHN pain.

Hi Scott, Thank you also for sharing your story. I greatly appreciate any information on this condition. I am currently taking Gabapentin; my doctor recently increased my dose. I am hopeful that I will be helped as this is only day 2 of the increased dose and I am feeling some relief, including some resolution of my depression. You mentioned you are able to exercise; does that include walking? I am so anxious to begin walking my dog again. Thus far, each time I've tried, my pain - not only where the rash was, but along my spine and at the base of my head has kicked up to an intolerable level.

I also noticed on your list of treatments that didn't work was acupuncture. I can empathize with you. I recently stopped acupuncture treatment as I never felt any decent resolution of my pain. I believe it is helpful for some conditions, just not mine.

Again, thanks for posting your experience. It is so helpful to gain valuable information and for simply the moral support!
Jenny

 
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Old 01-23-2014, 12:48 PM   #14
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Re: PHN pain

Pam. Happy dances all around when we all kick this thing!

 
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