Help please, now - it's the middle of the night.

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I live in Western Australia, it's about 4.30am in the morning and I am having the worst attack of PHN from Shingles.  I also have Fibromyalgia.  The pain behind my eyes is excrutiating, I can barely open my eyelids, it is all over my head rather than one area, normally left sided T5 aggravated.

Can anyone help me get some relief now, I'm frightened with the intensity of the pain but don't want to go to ED?

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8 Replies

  • Posted

    Hello Josey

    My name is Michelle & I live in SE Qld. My heart goes out to you suffering with this hideous virus. Do you live in an area where you can get a Doctor to go to your place? I know exactly how painful shingles is though I have not had it near my eyes. I have been trying to cope with re-occuring shingles since november 2013. i also have Fibromyalgia & I am sure there is a relationship between Shingles and Fibromyalgia.For me the only thing that has lessened the pain is strong opiates & Lidnocaine cream 5%. You can buy the Lidnocaine cream over the counter here in Qld. Have you tried calling 13HEALTH or Pian Management Australia at all? Not sure if they will help you but it's worth a try.

    As it is Good Friday today I suggest you rest as much as possible today. I am hoping you have some help at home & some emtional support. The last thing you need is stress. Stress definately makes my symptoms worse. I have not been able to work since 2011 due to chronic illness & a back injury. I was bucked off my horse & fractured my back in two places. Also i am diagnosed with Hashimoto's which is an auto immune disease affecting the Thyroid. If you haven't been tested for Hashimoto's it would be a good idea to get your thyroid levels done as it's pretty common to have Hashimoto's & Fibromyalgia together. Not sure what Doctors are like in WA but I have found it hard to find a Doctor who actually listens and cares about what you're going through. My GP is the best of an ignorant bunch but he looks after the government more than me because he worries how much anti viral meds cost & he doesn't really believe me when I tell him I am having a shingles flare. Since the second outbreak I have had a few cases when there hasn't been much of a rash. For me it's like the Shingles is active on the inside of the skin. I do have PHN which can be very painful too but the shingles sends very sharp stinging pain, like being stung by paper wasps over & over. 

    Have you tried putting a damp washer or hand towell in the freezer & letting is freze. Once the moisture has frozen you can try putting the washer gently on the areas that are most painful. Be careful about burning your skin with the icy washer. A lot depends on how sensative your skin is. Cold washer did not work well for me when the shingles rash first broke out but it has helped after the rash heals.Sorry I am not more helful than this. I do not belong to a church or religion but I will pray for you. Something good might happen!

    Please don't hesitate to reply if you need some moral support & just want to vent with someone who can empathsise with you. As an Australian citisen you have the right to quality health care. You also have the right to have your pain taken seriously. Panadol doesn't cut it with shingles so please don't let any Doctor disregard your needs. Sometimes you need to be assertive with Doctors. If they have never experiences shingles themselves they would have no idea how bad it can be. Best wishes to you,

    Michelle

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  • Posted

    Hi Josey,

    I live in the US and have had PHN for 26 years.  I'm also a psychologist and worked with chronic pain patients for close to the 40 years of my career. 

    There is a lot of information on what helps PHN on one of the forums on this site.  1. On this site at the top right of the page, do a search for "PHN."  

    2. Under "Search Results" there are 2 boxes.

    3. Type "PHN" in the first box.

    4. Select "Forums" in the second box.

    5. Click "Go"

    6. "Postherpetic neuralgia forums group"

    7. Scroll a little over halfway down the page until you see "PHN Things that Help."

    8. Click on that.  You will find a wealth of info on solutions that people have found.  I have contributed lots there also, including some info about pain management from a psychological perspective as well as creams that I have found useful for management of my own PHN. 

    Sorry this forum is so hard to find.  But, once you type any reponse on it, you will get notified when people add to it, then it's easy to find. 

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  • Posted

    Has your Dr. not given you pain meds and Gabepentin? I'm so sorry to hear how your suffering, we can relate. Many days and nights not knowing if we'll make it but we always do. I use ice packs when it gets serious like that where I cannot tolerate the pain.

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    • Posted

      Has anyone been prescribed Cymbalta?

      It is for pain and depression. I have it but have not tried it yet. Would appreciate any feedback. Josey, my PHN is in the torso encompassing an area of about 80%. Many of the sufferers that post in this forum have it in the same area you do so I'm glad you're able to benefit from it.

      Also, Aspercreme is very helpful which I use two-three times a day and lidocaine gel has also been helpful. When the pain is intolerable I use an ice pack.

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    • Posted

      I have been on Cymbalta, and have had many patients who were on it.  It is one of the SSRI antidepressants.  It does appear to work very well on depression, as do most other SSRI antidepressants.  As with all of them, you must work with your doc over a period of a month or more to get the best dosage for you.  Most folks do well on the recommended basic adult dosage of 60 mg., but some need more to get  a good effect. 

      For pain, I thought it dulled the PHN pain a little bit.  Don't expect a dramatic change, you'll be disappointed.  Look for a slight improvement. 

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  • Posted

    Hi Josey,

    Just to say I feel your plight, you will find there are many of us here who connect whenever they can. I live in North India and have PHN in the right occipital nerve, it means headaches on the right side all the time. Sometimes behind the eye but I seem to be able to bear with that. Some of the best help I had is from Charlie in this forum. I've had my condition for a year and a half, and have found it gets better with time, perhaps the body mind gets used to it. Maybe we are able to seek out the best meds and have a better understanding of where we are at with this awful thing. Get on top of it and know what to do...  able to control it more and more. I hope that's how it is for you.

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    • Posted

      Josey and Ron,

      Ron, I'm really happy you have benefitted from my posts.  That feels good. 

      Josey, you might try using Aspercreme, if it is available in Australia.  The active ingredient is salicylate 10%.  Other creams contain this, including Denco Rub.  You might find other products that have it with a web search if those two are not available.  It calms my pain and itching from occipital nerve PHN in the right eye, forehead, and scalp.  Nothing stops the pain completely, but it helps, it's cheap, and it's a topical cream rather than an oral drug, so it gets right to the area you need it in. 

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