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Day 4 - Disheartening things doctors told me

Discussion in 'Structured Educational Program' started by LaineyVeganseed, Aug 9, 2019.

  1. LaineyVeganseed

    LaineyVeganseed Peer Supporter

    I had Bell's Palsy in 2010, and the right side of my face was completely sagged from this "paralysis". I immediately went to urgent care, and received antibiotics which is the normal protocol. (The paralysis is thought to be caused by a virus inflaming the nerves that control the face.) They had me follow up with my family practitioner, who referred me to a neurologist in their practice. She was such a piece of work... I can still remember 9 years later how furious I felt! She didn't see me until 2 hours after my scheduled appointment time, because she was so far behind on her appointments. No apologies provided. Then her assistant kept asking if the Dr. wanted my blood tested for Epstein-Barr virus, which I found out later is a common cause of Bell's Palsy. The Dr. kept saying she didn't think it was EB, but luckily for me the assistant was insistent, and that test was included in the blood work. That is in fact the virus I had. She said I should do facial massages in order to get the blood circulating to aid in my recovery. Massaging that side of my face was painful so I mostly avoided that recommendation. (It is so fascinating to look back now and realize that my body could feel pain on that side of my face, yet the nerves would not operate my muscles, leaving me with such a pathetically sad, saggy face...) She also gave me a prescription for some kind of electro-therapy that sounded medieval, so I skipped that, too. Then my boyfriend at the time (cause of much of the repressed anger...) recommended I go see one of the top neurologists in the state. That doctor told me I would have no recovery (my sad, saggy face was unchanged for months now) and that my only option would be to get botox. I asked about alternative treatments, like acupuncture. He said they didn't work, especially for someone who had the paralysis for as many months as I'd it. I didn't accept that answer. Luckily, a friend referred me to an acupuncturist who was able to help "wake the nerves back up" and helped me get 90% of my facial distortion back to normal. I actually saw the second doctor walking around Costco by chance a year or so later, and I so wanted to go up to him and shout in his face with fury about his ignorance. I suppressed it (shocker...lol!), and never even walked up to him. Today I am working on forgiveness of both doctors. They aren't gods, they are humans too, that only pass along the knowledge and experience that they have. I should write them both nice letters, though, to explain that acupuncture and TMS can do wonders for their patience with Bell's Palsy!
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  2. nowa

    nowa Peer Supporter

    I realise this is an old post but had to reply because i have similar problems, I had BP in 2013 and my mouth sees to have been permanently affected, I drool a lot and cannot smile in an undistorted way... When i went to my gP, knowing nothing about bP but thinking I had had a stroke, because my speech was slurred and my eye and mouth were hanging down, she told me that i had " age related eyelid ptosis" and offered me an operation, which I refused, she ignored my distorted eye and mouth, and didn't seem to notice my slurred speech. So i went home and researched it, and got no treatment, but at least knew that I hadn't had a stroke...

    But to get to the present day, I have always been a mouth breather, because my father broke my nose at age 3, so for the last 3 years I have been taping up my mouth a night, to try and retrain my mouth {after the bP) and i would love to know whether the mouth symptoms are TMS or not, I emailed Steve Oznavich on the subject and will copy it here: (I described my situation and said that I didn't understand his comments about BP in his book, TGPD, this was his reply (whichI took to mean that I am fighting a losing battle with my mouth):

    "Those comments about Bells Palsy came from Dr. Sarno as well as the TMS physicians, I was just repeating what they discovered and told me. TMS pain stems from a reduction in oxygen flow via the brain, if a nerve doesn't get oxygen it slowly dies as we found out in my wife's spine. Bells Palsy according to the doctors occurs at the nerves at the base of the brain, and so is a symptom/effect of TMS, rage. Some nerves regenerate and others don't."

    Have you had any success?

    i forgot to say that the facial paralysis has engendered some frightening diagnoses of PARKINSON'S, because neurologists don't seem able to take in anything their clients tell them!!
    Last edited: Jan 11, 2020
  3. LaineyVeganseed

    LaineyVeganseed Peer Supporter

    First let me say how sorry I am that you have had to endure all of that, nowa! Don't believe for one minute the bull s--- that nerves can or cannot regenerate. They all can. The body is an amazing healing machine, and after 10 years of no change, my facial distortion has definitely been getting noticeably better since I started doing the Pain Recovery program in this wiki: https://www.tmswiki.org/forum/painrecovery/ (Pain Recovery Program) So anyone who tries to tell you differently, tell them that is F-ing bull s--- (which is good practice expressing anger... lol).

    I have started expressing my anger / frustration / etc. about things in my life to my trusted friends, and it has helped me see how much I used to stuff down things that really made me mad / upset / hurt. I've been taking photos of my face about every week, because the improvements are subtle but I definitely see and feel them!

    I would suggest that you think about what all was going on in your life at the time BP hit, that made you feel the way the BP makes your face look. What I mean by that is... my face looks pained when I try to do a full smile, like I am in despair. My heart very much felt that way at the time the BP hit, but I wasn't able to express it to anyone, just stuffed it all down. So the body expressed it physically instead and kind of got stuck in that mode. I was in despair for a lot of reasons, not feeling supported at work, in relationships, my life dreams not being realized to name a few. I am finding that the more I seek out people who freely offer the career support I want and need, the more I stand up for what I need and what I enjoy contributing in relationships, and the more I take concrete action steps to create my dream life, the more my face changes.

    All of that has been done with the help of the exercises in the Pain Recovery program mentioned above.

    Just an outsider looking in, I wonder if your bottom lip is dropping like the 3 year old bawling child in you would have been when you were hit by your father. There are no words to describe that kind of horrible experience... so maybe that child in you still needs help in healing through that...? Along with whatever was going on when the BP hit...?

    My facial distortion is definitely TMS, because it actually got worse for a few days before I started a new job, because I was so stressed out about it. Once I talked to friends about how I was feeling, it went back to where it left off. I had another minor worsening this week at the end of my first week in the new job, which was very stressful. Today (Sat), it is again back to where it left off. I learned in the Pain Recovery program that the body will worsen the TMS symptoms when the brain is afraid of something. Even something positive like a great job that I really wanted, doing what I really love, has generated lots of false beliefs, old fears, old limiting beliefs, old patterns of stuffing my emotions down.

    Please give the Pain Recovery program a try and please let me know how it is going! We'll get through this together and find our big smile again! :) :) :)
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  4. plum

    plum Beloved Grand Eagle

    May all the gods feckin Bless You.
    Sterling post my dear. ❤️
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  5. plum

    plum Beloved Grand Eagle

    Because my husband *has* ‘Parkinson’s’ I’m going to weigh in on this point and say most neurologists need to be taken out the back and shot. I cannot believe the evil, wretched nocebo-laden shit they casually tell people. It’s the God-Complex gone mad. I’m so sorry you’ve had to endure this. If it’s of any consolation, Parkinson’s is one of the most frequently misdiagnosed conditions. This is largely due to ignorance.

    I also have to say that Steve Ozanich’s words surprise me.

    plum x
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  6. LaineyVeganseed

    LaineyVeganseed Peer Supporter

    Thank you, plum!
    nowa likes this.
  7. nowa

    nowa Peer Supporter

    Thank you so much for your encouraging words! I am having problems with loneliness, because most of my "friends' have given up, I have been "ill" for so long, and i need to make some new friends, but with no energy and the ability to walk any distance gone, it is v difficult at my age (77). IF I could only sleep that would make a huge difference to my state of mind...
  8. plum

    plum Beloved Grand Eagle

    Sweetheart, have you tried restorative yoga? It’s basically a very restful, supportive practice of easy poses where your body is held safe by pillows, cushions, blankets. It can even be done in bed.

    Do you use YouTube?
    If so have a look at:

    Caren Baginski (and her adorable dog Willow)

    https://www.youtube.com/user/HappyMomentum (Caren Baginski)

    Kassandra (and her cats)

    https://www.youtube.com/user/yogawithkassandra (Yoga with Kassandra)

    Aprille (more mature teacher with an occasional cat)
    https://www.youtube.com/channel/UCCOOToZSV4lDrbmGXu96ySg (The Yoga Ranger Studio with Aprille Walker)

    (For each one look at their playlists for the restorative classes specifically).

    My advice is find a teacher you like, explore some of the different classes, then narrow down to either a practice or pose you like and patiently, self-compassionately, playfully, begin to practice them. I believe you need to calm your beautiful body down and a gentle devotion to learning how to relax really will help. I had to do this, as did the lovely Tamara @TG957

    I’d venture to suggest pretty much everyone on this forum has experienced insomnia as a symptom imperative at various points in their healing. Don’t fight it my darling. Let it be what it is and focus instead on learning how to self-soothe. Restorative Yoga is one way to do this.

    My husband suffers from inverted sleep cycles (another joy of Parkinson’s meds), and he gets up every night to do his own version of yoga. It helps him immensely. I light long burning nightlights each night so that the ambiance in the room is conducive. Most of the time he settles down on the sofa and sleeps there awhile.

    You will find a way out and through

    plum xxx
    Last edited: Jan 12, 2020
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  9. nowa

    nowa Peer Supporter

    I am sorry to be so pathetic Plum, but I cannot even get into the first child pose, I haven't got the strength to fold my blankets in the right way, and my feet are too stiff to sit on them. so i am in tears and the anxiety is too high for me to try anything else today... but i am paying (a very reduced fee) for yoga at home and my kind teacher will be here tomorrow evening and i will ask her for help..
    Last edited: Jan 12, 2020
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  10. TG957

    TG957 Beloved Grand Eagle

    nowa, don't be too demanding on yourself. The art of yoga is not about achieving acrobatic poses. The art of yoga is about connecting with your body and listening to it. That's why there are modified poses in yoga! If your body does not want to go into child's pose today, do a chair yoga. See if you could simply seat and do gentle stretches for your upper body. It will all come, if not today, then tomorrow....
    Last edited: Jan 12, 2020
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  11. TG957

    TG957 Beloved Grand Eagle

    Lainey, I am so happy for you that you are doing so much better!

    I have a similar beef with my former GP who incorrectly diagnosed me with carpal tunnel syndrome and would not send me to physical therapy, but rather put me on opioids. She later told me that I have to endure 6 months of chronic pain and steroid injections in order to be referred to pain management clinic. For years, I fought a desire to go to her office and unload on her in front of her patients and staff. I am still working out the best possible way to communicate how I feel about her arrogance and ignorance, but with royal dignity that would shake her to the core. We need to start a thread her titled something like "Best comeback phrase to use with my former doctor". :=)
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  12. plum

    plum Beloved Grand Eagle

    It’s ok. There is nothing pathetic about being unable to do yoga, or anything else for that matter, so cut yourself some slack and go easy on yourself. I totally agree with Tamara. Yoga is much more about self-compassion and listening to your body rather that criticising it. So promise me you’ll be kind to yourself.

    Do speak to your teacher about restorative yoga though, because at its heart it is all about healing and resting. The simplest pose is to lie in bed, pillow under your head, and if you can manage it, another pillow under your knees. It’s supportive and restful. Don’t worry about folding blankets and such, and certainly don’t worry about getting into child’s pose. I have big boobs and that makes the pose really hard for me :)

    Do you fare any better with something like guided meditation? Or relaxing music?

    plum xxx
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  13. plum

    plum Beloved Grand Eagle

    You should do this. :)
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  14. nowa

    nowa Peer Supporter

    I used to fare better with guided meditations, until a few weeks ago, when anxiety got worse and now they are all v irritating, but I will try again. Music is something that I used to love until some years ago, and now I need to get into the habit of listening again.
  15. BloodMoon

    BloodMoon Beloved Grand Eagle

    I haven't tried this kindle book as yet, but someone recommended it to me; it's called 'Yoga in Bed for All Ages' https://www.amazon.co.uk/Yoga-Bed-A..._1?keywords=yoga+in+bed&qid=1578862526&sr=8-1 There are couple of other yoga in bed books on amazon if you don't have a kindle. Also, there are a load of youtube videos in the same vein https://www.youtube.com/results?search_query=yoga+in+bed (yoga in bed - YouTube).

    I do yoga nidra every day, which in a non-movement yoga for relaxing which I find really good for helping me to sleep well. Here's a youtube video on that too

    Also, have you tried Qigong at all? I particularly like this book; it's title indicates it's for anxiety, but the Qigong movements in it are actually just generally very relaxing for anyone, even if there's no particular anxiety present https://www.amazon.co.uk/Qigong-Wor...ds=chi+gong+for+anxiety&qid=1578866896&sr=8-1 (If you have a lot of shoulder and arm pain though, it might not be the book for you as, although the movements are gentle, they involve a lot of arm movements.)

    I hope things improve for you soon. Sending you all good wishes.

    Last edited: Jan 12, 2020
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  16. nowa

    nowa Peer Supporter

    thank you so much, blood moon...
  17. nowa

    nowa Peer Supporter

    I had a strange dream, when I fell asleep for a few seconds, about a time in my life full of trauma. which i had not thought about, this is the thread where i posted it;
    feeling the emotion, but no relief (UNTIL I GOT INTO THE SEWER)
    but i haven't been able to feel the emotion, because i am too tired, so when will i ever get any relief?
    Last edited: Jan 13, 2020
  18. nowa

    nowa Peer Supporter

    well it is now 5.15 and i haven't slept apart from the few seconds of that dream, and I listened to that beautiful yoga nidra, but i couldn't relax.

    When will this end?

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