Why is it worse / different after 2 yrs?

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Supraocular and supratrochlear nerves to the left eye & scalp are fried.  Formerly an EEG Tech, I read every neuro article out there about PHN - the "coincidence" of increased rosacea near or at the site, the biopsies of affected PHN sites showing 100x the # of nerve cells than non affected sites, & so on.  Slogging thru suicidal thoughts, despair, strained relationships, and the "but you look fine" replies have left me / us no alternative but to find the answers ourselves.

And I need your help.  Each paragraph has a topic title - if you can include the topic in your reply title, that will help organize the replies.

MYELIN SHEATH - do the supraorbital & supraocular nerves have myelin sheaths?  Some nerves have this outer sheath covering the twisted bundle of nerve fibers, but none of the five specialists I was seeing simultaneously could answer this question, nor can I find the answer.  Are all PHN sufferers dealing with nerves that have myelin sheaths?

R ALPHA LIPOIC ACID - This OTC mail order capsule came from Geronova Research in California, and despite its $ 120 monthly cost, it may have helped.  My pain is far worse now than it was a year ago when I could afford it for a few months.  This acid may aid in nerve regeneration in adults.  There was a large body of medical research done by Germans in the mid 30's on nerve regrowth, and the surnames of some of the principals in Geronova Research appear to be German  Does this California company have connections to nerve research done eighty years ago?

FRUCTIS HAIR CONDITIONER -  Because I can only wash my hair by slowly dipping my head backwards in water and shampooing the happy part of my head, my eyes are closed during this ordeal.  A few weeks ago, my hand, cupped with Fructis hair conditioner, accidentally hit my affected eye and scalp.  Instead of screaming with pain, I had immediate, cool, soothing relief from the 24/7 burning itch and no pain from touching the fried area.  I repeated this three times over the next week, all with the same instant relief.  The instant relief continues each time I apply Fructis conditioner.  My beautician confirmed my thought that conditioner closes the hair shaft.  Could the conditioner be "closing" these open nerve endings?  She gave me two different Fructis conditioners and another brand of conditioner that is a different type of product.  I am comparing each kind and noting the common chemicals in the most effective two conditioners.

CHEMIST NEEDED - Once the common chemicals are determined in the hair conditioner, does anyone know of a chemist or chemical researcher outside the US who would be interested in helping us determine if a hair follicle closing chemical is also closing nerve receptors?    

BODY ELECTRICITY - The body is full of electricity, and in the first three months of PHN, I suffered mini seizures or "neurological events" from the mass at my brain stem and too much electricity firing from the damaged nerves.  Although the mass subsided, a few times a month the events start to form, always in the same spot and always starting with the jagged, white light in my brain.  However, I can hold my palms together over my eye, concentrate, float my body above the clouds, and within seconds the white light and pain go away.  My theory is that my hand electricity is negating the overactive electricity in my brain.  Is there any way to prove this?

SUICIDE - I need help.  Despite my better days, there are still too many of the bad days, and if too many of the bad days happen back to back, I want to check out.  Don't tell me to call the hot line.  I want to talk to someone who understands PHN and doesn't tell me that it's selfish for me to want to check out because I have headaches.

Thank you, & may all the gods we believe in bless us.

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  • Posted

    Hi jjb99 I’m so sad😔to read ur post. Reading it though I realise there is someone who understands exactly what I am feeling. I have a VERY supportive husband and fantastic helpful children but they obviously can’t help with the pain that is surging around my body. I have had PHN for the past 15 months now. I have been on every know medicine for the treatment of PHN and had various surgeries including spinal block, spinal cord stimulation and even burning of the nerves with pure spirits all with nil effects😔even strong pain killers like morphine have NO effect. I am now permanently in a wheelchair as ANY movement even while walking causes permanent pain. I had shingles under my right breast. Even doing simple things like brushing my teeth or hair even cutting my food or lifting a coffee cup is extremely painful 😖 I am a 43 year old woman with 3 children under the age of 16. I have gone from being an independent happy go lucky lady to a helpless dependent 😿person I was always the one that people could rely on now I have to rely on others for help😭look I know from my own experience how dark days can get and that’s WITH the support and love from family and friends. I read a quote from a Dr that truly summed up my feelings on PHN “PHN is like the pain of cancer but without the relief of death” which for me feels totally accurate because there’s a answer to the problem either way as u either get treatment or it will kill u😔but with PHN there doesn’t really seem to be a consistent form of treatment (like chemo for cancer) and as far as I know u can’t die from the pain of PHN 

    So yes I know exactly how dark our days can be and I too feel like I can’t go on and that’s MOST days but I’m a true Taurus very stubborn and am very conscious of the people surrounding me what effect would it have on them if I was gone? I truly believe that everything in life is a test and that we are given choices u know it’s much harder to fight. some days I feel like I can’t fight anymore but I look around me and I see how truly blessed I am. Life is a very precious gift yes it’s hard but I believe my life is worth battling through the pain. I don’t know ur home situation but what I do know is that I am here to listen to u and give u the support that u and I both need to get us through this. I understand exactly how it feels to be related to THOR LORD OF THUNDER (marvel character Incase ur not a fan) as my body constantly vibrates with electricity so let’s face this together and no ur NOT selfish for wanting the pain to stop 🛑 believe me I know pain I have had 3 kids with no anasthesia, been in a very bad car wreck and had various outher issues with pain so yes I know pain but this my friend is a undescribable kind of pain and only those who have felt it no the strength of it. So if ur willing to talk I’m here to listen sometimes all we need is a little bit of understanding and I understand u completely. And my final comment is check out the last THOR movie Ragnarok look out for the scene where he gets his full power OMG 😲 it’s totally me on a daily basis 🤣I’m telling u if I could transfer my electricity there would be no need for batteries 🤣I hope this has helped if I haven’t the movie should at least make u smile I look forward to hearing from u soon take care.

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    • Posted

      Angela, yes I want to talk to you!!!!!!  How do we get the moderator to connect our emails so we can share phone #s?  I never realized that any motion around the breast dermatome could stop one from walking and confine you to a wheelchair.  Aspercreme w/ 4% lidocaine is my go to topical mixed with Fructis hair conditioner now. Try it and let me know if the Fructis is helping. Celebrex, Cymbalta and Lyrica are my oral Med choices with only 150 mg of Lyrica twice a day to retain brain function. PHN qualifies for SSI income if you can survive the year waiting period.  I choose to work, because the financial controller and crisis of the moment type of work I do involves complex analytical brain processing in a part of the brain that is thought to be the same or adjacent to the part of the brain that processes pain. When I do complex brain processing, the deep pain disappears and only the surface burning pain remains At a fraction of its default level.  When I go to the restroom at work, the pain returns, so I scurry back to the crisis of the moment. Plus we were burning thru retirement funds because I spend $ 500- 1000 per month on what insurance does not cover.  A wealthy relative offered to fly

      Me anywhere in the world for treatments & cover all costs, but there are no answers yet.    Take care, and I hope to hear your voice soon!!!

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    • Posted

      Hi jjb99 I apologize profusely for my late response. With the gift 🎁 that keeps on giving I have been very ill again with ANOTHER  round of shingles then 🤣 I got the flu 🤒 because it’s coming into autumn 🍂 and the kids are back at school mixing with other kids who have the cold/flu then that turned into newmonea.... ahhhh the joys of a weakened immune system 🤪what can I say I’m just lucky I guess. I hope ur ok I won’t stay on long cause I’m still pretty weak just wanted to see how ur coping and to say I’m here even though I can’t answer straight away at the moment I’m here if u want to say how bad or good ur feeling sharing sometimes just makes it easier to cope with. Keep in touch let’s get through this together. Once again plz forgive my late reply honestly it must be bad for me not to answer cause I’m always chatty 😉🤣🤣

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  • Posted

    I am so sorry to hear how much you are suffering. My PHN history is approaching the 3 year mark. I want to respond in more depth, but can’t at the moment. I hope the comments from Charlie and Babs are allowed to come through to you by the moderator. I have found them to be helpful and kind. Please, at a minimum, know that you are not alone. Jeaneen 
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  • Posted

    I have NO idea why these things get caught up like that. Both Charlie and I know the rules. I never put links in or do anything I think may make the little bots unhappy, yet it happens.
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    • Posted

      At the bottom of this page, click on "contact us" then deal with the various hoops until you get a box to type in.  Anyone else who is having problems with having messages "moderated" for no apparent reason, feel free to do the same.  Please be nice, but maybe ask them to loosen up on the rules for not allowing replies, or at least let us know the rules so we can avoid the problem. 

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    • Posted

      I believe I got through to the correct area and I requested to either have these posts released or to at least let us know what we're doing wrong. If I had known this would happen, I would have copied the info so I could re-post. All I remember is that it was fairly lengthy and I thought very helpful. Sorry JJB.

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    • Posted

      I got someone from Patient to respond, and sent her more information plus a screenshot of 4 blocked messages to jjB.  Will see what comes of this.
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    • Posted

      No, they were not. If you look further up you'll see that his, mine and Barclay's have now been deleted. Who knows why. But it would be nice to let us know if some word, phrase or punctuation set off a bot to block us that they'd let us know. Sometimes I write several paragraphs. I am STILL having trouble with cognition and pain in my back while sitting at a keyboard, so it's very frustrating to see all the work down the tubes.

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    • Posted

      But you are ballroom dancing! How I envy your continuing recovery. Do you still get those weekly summaries from this site? They used to arrive on Sundays
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    • Posted

      I may get the summaries, but I don't look at them. When I see updates on new messages I go to them then if it's a forum I'm still interested in. You're right, I have come quite far in my recovery. But right now as I'm in a taper from gab (I take 8 weeks between drops) I'm a bit more uncomfortable. At that particular moment, I was having a bad stretch, but am better now. These messages that get blocked are very exasperating. I'm not going to copy/paste them into a document or email just to make sure I can try and re-post. I have done them a few times, but won't anymore.

      I was very lucky in that about the 3rd month, there was some minuscule improvement. I didn't really notice at the time, as for the next few months it was so gradual, but seeing some positive changes at all made it likely that I'd continue to see more. With Charlie's help, I tried to be aware of those good things and focus on them. Maybe there ARE a few things that you can do more easily now than you could a few weeks ago, or even months ago. For me, flossing my teeth became a marker. One day a few months ago I realized that act didn't hurt anymore. It's not my teeth, it's the action created in my back. Sometimes it still comes back, but realizing that had happened felt good.

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    • Posted

      Hi Babs,

      just to let you know, i have not gotten any notifications of other postings since 8 weeks ago, when i tried (but failed) to communicate with the management of this site. apparently i have been blocked in some way, for what reason i don't know.

      Charlie

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    • Posted

      I am not receiving any info or updates. Bonnie and I occasionally send private messages. When I tried to reply to her about 2 weeks ago, I don' think the message went through.

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    • Posted

      maybe the site is no longer working, no longer notifying people when there is a new message? IVE ALWAYS GOTTEN SUCH NOTIFICATIONS ON MY ipad in the past. also, i notice the site no longer provides auto-capitalization, periods, etc, at least for me. but, these messages are getting through. my past effort to contact management failed, and i know of no way to get in touch with them.

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