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How do you all work with the PHN?

Posted , 3 users are following.

elsa93973
elsa93973

i have had PHN for a year now. I was mis-diagnosed at the early stage with a sinus infection. 5 days later I went to the emergency room and the doctor said I had shingles. I was having terrible headaches at the same time. I could not open my left eye and my forehead had the lesions.

A week later my primary Doctor recommended an MRI for the headaches. The MRI showed an abbess on my right occipital lobe. Two days later I had emergency surgery. My brain showed some bleeds and an abbess.

the next morning my eye opened up. This was July 27, 2015.

Anyway, I took some time off of work. After each follow up with the neurologist and surgeon my intent was always to get back to work.

not knowing how long my brain and my shingles needed to heal. I was laid off in November 2015. I am healed from the brain surgery, but the PHN has not changed. I take Lyrica 100 mg. 3 x a day. I cut in half a dose of nucynta 2 x a day. These do calm my nerves but make me sleepy. I take nortriptyline at night.

This has been so frustrating. It has changed my life. Any stress sets me off into a itching episode on my eye brow and head.

My neurologist suggested that I try working part time, or volunteering. My SDI has run out and my long term disability is wanting to cut my benefits. My PHN is not better. So I really don't know how I could go back to work. I just want to know how y'all handled your work and home life obligations? 

 

0 likes, 5 replies

5 Replies

  • Geezee
    Geezee elsa93973

    Posted

    Hi Elsa

    Sorry to hear of your pain and troubles. Many of us have been there too. 

    There does not seem to be any sort of quick fix or even a cure of any kind. The best way forward might be to try different combinations of medications to find the one best suited for you without too many ill side effects. 

    The other thing is to work on managing stress levels, which is easier said than done. I take frequent breaks and don't try to push myself too hard. Every evening I try to find the time to properly relax, although this isn't always easy. 

    I am working part-time and a student part-time, but I'm not sure how I will manage to work full-time while still suffering bouts of pain and negoitating side effects. 

    Good luck and hanging in there

  • erin72929
    erin72929 elsa93973

    Posted

    I am so sorry to hear about your PHN and that brain abcess complication.  That's one I haven't heard before.  I am very fortunate at this point to be on long-term disability.  I find it very humbling to admit that my PHN and the other neuropathy I have make me unable to work.  I can do tasks for short spans, like 15-20 minutes.  Then I have to rest, or my neuropathy will make my skin catch fire, and my neck will act up.  My PHN is largely controlled by the daily anti-viral plus Vitamin D, Magnesium and Lysine I take.  I also take 100 mg Lyrica 4 times a day; 60 mg Cymbalta; plus pain meds (hydromorph contin).  But I had been on the Lyrica etc for a few years before I got the PHN.  It took me a long time to learn that itching, buzzing, burning, and other sensations are actually pain.  That is one of the reasons I take opioids.  I can get very worried about the future, but I focus on one day at a time and that really helps.  It sounds like you have have endured a very serious situation.  Is your primary care physician supportive of your remaining home from work?  Don't you have to be able to work to go back?  It doesn't sound like you are ready.  Isn't the LTD supposed to help you get back to work at your same job?  Then if you can't do that, at another job?  And if you can't do any job, you are disabled permanently?  I'm in Canada, so I'm not sure where you are and how it works.  

  • elsa93973
    elsa93973

    Posted

    Hi Erin & Gee Zee,

    Thank you for your kind response. As you all know, this is so frustrating because no one can give you a time line to improvement. 

    Erin, I will add the supplements you have mentioned. I am willing to try anything in hopes that it will help with the pain.

    I know I am not ready to work part time. I will stress that to my neurologist. 

    This is has been a life changing event. I have been in the work force over 40 years and adjusting to my new "normal" is frustrating at times.

    I am so grateful that I found this site. 

    I want to wish you both good health.

    Elsa

  • erin72929
    erin72929 elsa93973

    Posted

    I wanted to mention how much the foods with arginine really increase my pain levels. I was at a family party Wednesday night where I ate a sausage (pork) and I also had a sliver of a home-made chocolate tart.  The agony in my face started pretty much right away and by today was completely off the scale.  I had to take top-up meds to get through yesterday and today.  

    And, I wanted to recommend a book that I have been reading over and over since last year, it's called How to Feel Better.  It's practical and has little case studies.  It is a UK book written by some people from some pain clinic somewhere there.  I really like it.  

    Best of luck!

  • elsa93973
    elsa93973

    Posted

    Thanks for the suggestions. I will note the things I eat and see if any foods make my pain worse.

     

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