Post Herpetic Neuralgia/Trigeminal Neuralgia

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This topic contains 15 replies, has 7 voices, and was last updated by  lissliss2244 2 months, 2 weeks ago.

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  • #254080

    durango430
    Participant

    hello all,
    i’m very surprised to not see PHN/TN anywhere that i can find as a topic so i’ll just tell a little about living with this and go from there.
    i contracted PHN from (in looking back on it what i feel was) inadequate treatment from my first case of cranialfacial shingles from the ER. not a long enough or adequate dosage of antiviruals as just a few weeks later i had a reoccurring case of the shingles. as i now knew what the symptoms where i went to my PCP. he prescribed a larger/longer regimen of the antiviruals but a woefully inadequate regimen for the pain. upon researching why my pain continued months later i found that proper pain management was key to preventing PHN. as the PHN progressed to include TN my life became miserable (look up the nickname for Trigeminal Neuralgia). and yet, living in the State of Ohio, i could not find the pain relief i knew i required. how did i know what worked for me? my PCP found a Pain Management Dr. who prescribed me 2 Schedule 2 medications along with gabapentin (Neurontin) and carbamazepine (Tegretol) and low and behold, although i was still in pain, it was at a manageable level. i met with this PM Dr. the middle of Jan and scheduled 2 Trigeminal Ganglia injections a week apart. the 1st one had no immediate effect but he told me to give it a day or two. when i went back in Feb for the 2nd and told him no relief he cancelled the 2nd and sent me to a NeuroModulation Neurosurgeon for a Peripheral Nerve Stimulator Implant device but still filled my prescriptions. in March when i called to set my appt to fill my prescriptions i was told that because i was now seeing the Neurosurgeon to have him fill my prescriptions. problem was he does procedures only…doesn’t fill PM prescriptions. thus began my journey that eventually led me here to learn how to advocate for proper pain relief medication prescribing.
    i live at a constant 7 which at bad times goes to a 8. here’s how i judge the pain scale…9 equals being shot or stabbed and 10 would be akin to the carnage of being in a car accident but not killed. i will never say the PHN/TN is a 10 although when the electric feeling shock runs from my brain through my eye (what i call the ‘tasers’) i think it may be a 9 but it never lasts long so i say 8. the constant 7 is from the skin on my left scalp and left side of my face and around my left eye feeling like it’s been boiled and stretched back over my skull and feels very thick-the burning pain is constant. i now wear my hair very short as any wind or movement of it causes ‘my hair to hurt’. and the electric ‘itchy/pains’ i feel on the left side of my face and head are virtually constant. so bad that i’ve rubbed my left eyebrow off! remember ever putting a battery on your tongue? that’s the feeling i have all over my face only constant and it itches too.
    and the only treatment i can get for these different types of pain, as i said before, is gabapentin and carbamazepine-inadequate! so i want to become an advocate for removing politics and ignorance from pain management.
    long post but thank you

  • #256536

    TPC_YaYa
    Moderator

    Hello Durango430,

    Welcome to The Pain Community (TPC). We do wish we were meeting under different circumstances. We have known many who suffer with the Trigeminal Neuralgia and we are so sorry to read your post and how this came to be.

    We are committed to providing you with the tools, resources, support and coaching you need to be your own best advocate on the pain journey you are traveling.

    Here on our website we have a section all about advocacy and we will start there; https://paincommunity.org/advocacy/.

    Read the advocacy section and then come back to this topic and we can take the advocacy skills that you will learn and help you personalize the skills for your needs.

    In the meantime if you would like to talk to others who are on this journey with pain, we have a couple different options. First being these discussion forums, we also offer live hosted chats, Monday, Wednesday and Friday here on the website in the chat room at 11:00 AM ET.

    We offer support calls every Tuesday and you can read more about them and see the schedule here at this link; https://paincommunity.org/tpc-outreach-support-conference-calls/

    If you would like to also interact with us through email you can contact us at; outreach@paincommunity.org

    Take care,

    TPC Yaya
    TPC Community Moderator

    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

  • #256540

    terri
    Participant

    Hi, I am no expert but is there someone at the Neuro’s office that could inform the other doctor that he/she as a matter of policy does not prescribe pain meds for pain management? Or is there some type of documentation you could take to them regarding the face the neuro does not prescribe pain meds for pain management? Or could your primary care doctor communicate to the doctor that the neuro does not provide meds for pain management? We have a lot of clinics here that are “pain management” but don’t prescribe pain meds.

  • #259182

    durango430
    Participant

    TPC YaYa and Terri thank you for your replies. Terri, the short answer is in the State of Ohio, ‘No.’ the ‘Guidelines’ (and they are only guidelines) set forth by the Governor’s Cabinet Opiate Action Team have set reasonable-i think-amounts for Chronic Pain Relief but i have found out that there’s an insidious gov’t control happening that comes from neither a Counsel, Actions Team or Regulatory Board.
    long part-while speaking to, once again, another Pain Management Dr. about why he wouldn’t prescribe me the proper medications and being persistent about it he said “Look, listen. I can prescribe as much or as little opioid pain medication as I want. It’s just that the government (he didn’t state which office or entity) can look at my prescribing records and if it wants to it can make it impossible for me to get insurance.” i was astounded! i said that i didn’t think the Ohio Dept of Ins covered medical insurance and he said “No but they communicate with companies that do.” this PM Dr went on to say that there’s also no quantity of prescriptions that is considered ‘right or wrong’ but when the insurance company reviews your files it is an ‘activist but antiquated’ view. they search for an unquantified number of opioid prescriptions (activist side) but when they ask whom they are for they look for xrays, mri’s and scans showing breaks, tears, visible nerve damage while things like neuralgias and such are met with near derision (the antiquated side). so he chooses to treat neuralgias with injections and the such which have proven time and again ineffective for me.
    that conversation showed me a glimmer of light as to why i CANNOT get the proper prescriptions for my PHN/TN. and when i looked further into it i was astounded that the scare tactics are based on Guidelines not legislated laws or regulations. now i understand the Drs’s stance on not prescribing so my frustration has turned from the Drs to the political machine-Mike DeWine-that is doing this to drive his own agenda for election as the ‘opioid’ crisis is such a hot button right now….and the media that drives it (Ohio is basically a Republican State and Mike DeWine touts himself a Republican when it suits his purposes so the media falls in line.)
    so there’s the long answer as to why i cannot get the proper medications for pain relief. my PCP found 1 last PM Clinic that may help me but this would be the 3rd this year he gave a referral to and they count referrals given so he warned i may be put off as a ‘Dr. Shopper’ even with his referral. fingers crossed!

  • #259183

    terri
    Participant

    I knew that politics were playing a role in what was happening. Everyone jumping on the band wagon trying to look like they can solve the crisis like Trump saying he wants it easier to prosecute doctors. That is horrible, snake in the grass tactics they are using in Ohio. In NC they passed something called S.T.O P. to try and limit the amount of time a patient could be kept on pain meds so doctors took away meds from patients that had even documented issues with mri’s and the like. I really feel for you and your suffering. It is so, so unacceptable what they are doing. And the fact that a person sees another clinic makes them look like they are doctor shopping is crazy. Pure madness.

  • #267380

    Noki4
    Participant

    The same thing is happening here in WV. The state took the CDC Opioid Guidelines meant strictly as guidelines for primary care providers and added to them. Since July of 2017 they have been in the process of trying to make everyone who has Medicaid or Medicare wean off of opioids and go below the recommendations of using at or below the equivalent of 90 milligrams of morphine per day.

    Take care,

    Noki4

  • #267382

    durango430
    Participant

    terri, i know…that’s why my PCP warned me but the pain is so bad that i have to take the chance!
    noki4 i think in ohio it’s 80mg of morphine equivalent but i don’t know what that means but i sure would like to find out one way or the other by receiving it. not sure how they can control Medicare except by intimidating Medicare providers but they certainly can control Medicaid.
    regards

  • #267383

    Noki4
    Participant

    Durango430,

    This is the way it has been explained to me by my health care provider. Regardless of what type of opioid pain medications you are using, it must equal out to be no more than 90 milligrams of morphine, if you were taking morphine.
    The 90 milligrams of morphine is being used as the goal post and the CDC guidelines say that if you must be on an opioid then it should be no more than that. Regardless if you are prescribed Fentanyl or Vicodin or the other types of opioid pain medications it is to be equal to taking 90 milligrams of Morphine.

    Take care,
    Noki4

  • #267385

    terri
    Participant

    When the doc says it might look like you’re doctor shopping who is looking at a list of doctors that you went to? Is this list something medicare is reviewing? I am on medicare as I am disabled but no one ever mentioned this type of thing. My father is 81 and saw a bunch of pain management type people. Maybe it’s different here in NC. His primary care doctor didn’t seem concerned. I thought it was only doctor shopping if they give you a prescription. But who knows. The master plan is probably to get every doctor in the country to stop prescribing anything unless you are on an operating table!! Pretty soon people will be having surgery wide awake with no pain blockers!!

  • #267386

    durango430
    Participant

    Noki4 in Ohio it’s 80mg-the AG always has to trump what’s ‘recommended’ as ‘Guidelines’ as he’s running for governor so he’s using this hot button to flood the media-local news channels in particular-with his War On The “Opioid” Crisis when in fact as opioid based prescriptions are down dramatically the deaths from “Opioid Overdoses” (Heroin and street made Fentynal) are up 3 times above the national average (based on an article in the Columbus Dispatch). anyways i researched and 80mg would work for me and a hydrocodone prescription as i would be taking much less as it’s a 1:1 ratio.

    Terri, it’s another “Guideline” from the AG running for governor in Ohio. not only is there OARRS where they track your prescriptions from any pharmacy (so much for HIPPA) but the receiving PMC (Pain Management Center or Clinic) is ‘obligated’ to ask. i was turned down today by a PMC for this exact reason! i know you were being facetious when you said ” Pretty soon people will be having surgery wide awake with no pain blockers!!” but get this….my sister is a pharmacist at a hospital close by and when i told her of my travails she told me that they are having problems getting Fentynal for surgery! and of course of post op pain care too! this is anecdotal but is true-and is absolutely criminal!. that’s when i started researching how to fight this political crap and scourge….taking pain management away from law abiding people in need and either making us criminals or making us live in interminable pain…or worse yet..driving good people to the streets to have us end up ‘Opioid Overdose’ statistics.
    Regards

  • #267387

    terri
    Participant

    I am so, so sorry the pain clinic turned you down. That is horrible. I feel for you. I guess I should not be surprised even the hospital is having trouble getting Fentanyl. They don’t care if patients are in pain. Yep, the politics are way out there about all of this because they think this is what the public wants. I hope that guy running for gov gets horrible pain some day!!!!

  • #272961

    Noki4
    Participant

    The unrelenting bull that we are being put through is not going to stop overdoses. However those in politics do not seem to understand that or just don’t care. It is sad that while there is an absolute need to help those souls who are fighting the demon of addiction that isn’t what is happening. This has become a political issue when it should be a healthcare issue. Those in the world of politics see this has a way to get re-elected because they can say they are doing something to stop overdoses and are working to stop doctors from prescribing these medications. They don’t care that legitimate people with pain are being hurt or that addiction is not being stopped.

    It is beyond sad and frustrating and so much more.

    Take care,
    Noki4

  • #272969

    FredFriend
    Participant

    The politics around effective pain management have become more out of control lately. It is terribly unfair, nee torture, not treat people with chronic pain. Honestly, those politicians who draft and pass laws with dosing limits are practicing medicine without a license. Maybe a class action lawsuit in Ohio or West Virginia along those lines would have an impact to get the pain management pendulum swinging back in a more humane direction.

    Trouble is, we are people with pain barely making it through the day and we have limited financial means to hire an attorney.

    Until we reach that point, we need to tell our stories in a public way. I had lunch with a cousin yesterday who has had his opinion altered from an ultra conservative position advocating more restrictions three years ago to a more humane position acknowledging that the restrictions have gone too far and are not having the intended effect on the ‘opioid crisis’ based upon news stories with accounts of people’s experiences.

    Let’s keep sharing our stories.

  • #419419

    aricka
    Participant

    Hello! I just joined this group. I have TN currently and I also had it about 8 years ago. At that time it had lasted for about 6 months. During that time I went to my dentist to try to get all my teeth yanked out since I didn’t know what the problem was but it felt like the pain was originating from my teeth. He couldn’t find anything wrong with my teeth so I went to a neurologist who said I’d be on medication the rest of my life. I finally went to my chiropractor who quickly diagnosed the pain as Trigeminal neuralgia and said, “I can fix that! You should have come to me sooner!!” He adjusted my skull, atlas, whatever?? and in about 2 months I was pain free. Miraculous!!! I’m not sure if that Chiropractor is still treating patients, but I would highly recommend him if he is: Dr. Brian Miller in Edinboro, PA.
    However, it seems like any chiropractor could do what he did. My issue had been that an artery was pressing on the nerve, causing pain. You may have a different cause for your pain?? But If that is the issue, try a chiropractor.
    Dr. Brian did tell me though, that if I had come to him right away, as soon as the pain had started, it would have resolved much quicker. As it was, he adjusted me twice/week for the 2 months. Unfortunately, it’s now back again and I’m seeing a new chiropractor where I now live. He’s hopeful though.

  • #422944

    lissliss2244
    Participant

    My heart goes out to all of you that are dealing with TN OR any illness. I have been dealing with TN on and off for over three years so I know the horrors of it. It came back about three weeks ago but this time I have been able to fight back and actually heal it using the information I got from Anthony William the medical medium. I’m amazed at how good it’s working. It’s almost gone and I’m not on any medication this time. I would love to help anyone that needs it b y telling you what I’m doing. You can even read my blog it tells my story. http://Www.healingtrigeminalneuralgia.wordpress.com

  • #422945

    lissliss2244
    Participant

    @vickismith123 me and my partner and our daughter dealt with something similar in the past because he was out of town for work a lot too. It was hard to deal with. I did a lot of research and read that from A psychological standpoint with their dad’s being gone all of the time they start viewing them as unsafe because when the mother is there all of the time feeding them, putting them to bed and nurturing them when they cry. They realize that no matter how big of a fit they throw or how hard they cry their mother will be there no matter what and they won’t leave them so it builds a sense of security a trust. They don’t have that trust with their father because he’s always leaving. I read that what you should do is start having her dad do things for her that you normally do but make sure that you tell your daughter beforehand that daddy is going to do it instead. For example say that you’re always the one that feeds her or put s her to bed. Tell her that tonight your going to do laundry etc. while daddy puts her to bed and feeds her. She will probably cry and throw a fit at first because children like to stick to their routine but no matter what don’t go to her rescue. Tell your husband not to get upset but just to hug her and hold her and he doesn’t have to say anything he just needs to let her know that he loves her and that even when she cries he won’t abandon her. That she’s safe with him just like she is with mom. I felt like it helped so hopefully it does for you too. Good luck

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