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TMS or altitude

Discussion in 'Support Subforum' started by JacketSpud, Jun 15, 2016.

  1. JacketSpud

    JacketSpud Peer Supporter

    Ok guys, I totally had this down. But now I'm scared again. Let me explain. This might be long.

    I moved to Colorado 12 years ago. 2 years ago I bought a house (our second, a year after selling first). I developed excruciating head pain and was diagnosed with occipital neuralgia. The only thing to give me any relief was deep tissue massage. A year ago Due to unforeseen circumstances we sold out house and moved nearer sea level. I discovered TMS after moving, worked hard on it, got much better over the course of a year, but never fully healed. Had many flare ups but survived. It never went away but it's completely easy to live a normal life.

    Well here I am a year later and we hate living away from our friends so moved back to Colorado (high altitude) and are in the process of buying a house. Buying a house is obviously stressful and moving to Colorado means giving up my dream of moving back to my home country, at least for the time being. Since I got here my head has gotten bad again. So now my brain is saying "Colorado = headache, sea level= slow improvement". Logically I know this is an association and stress from moving and buying a house but I can't move past the fact that I got worse at higher altitude. I keep thinking I'm doomed to pain for as long as I live here.
  2. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    For the TMS/psychosomatic solution to work, all TMS authorities say you need 100% BELIEF, or it leaves a little opening of doubt for the "occipital neualgia" dx to put a foot into the mind's door. What is "occipital neuralgia" anyway, that's a new one to me? Neuralgia used to be an archaic term for TMS.
    Last edited: Jun 16, 2016
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  3. JacketSpud

    JacketSpud Peer Supporter

    Occipital neuralgia is actually relatively recently described. It's electric shock and throbbing pains up the side of your face.

    As I said, I had 100% confidence in it being TMS and it never fully went away, and that was fine because I knew it would eventually. But since getting back to Colorado and it all coming back full force, it has put doubts in my mind. It's made me worry that it's the altitude. I was on top of it before but then I came back a mile high and it all came back. When I left for sea level it started to get better. I know correlation doesn't equal causation, but it would likely concern anyone in my shoes.
  4. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    "If it ends with "itis" or "algia" or "syndrome" and doctors can't figure out what causes it, then it might be TMS." Dave the Mod @ TMSHelp

    I'm always suspect when "medical science" comes up with a new dis-ease, when they can't figure out what is going on with you that are likely TMS. Like "sjogren"s" syndrome for Venus Williams bouts with lethargy. The human body doesn't evolve fast enough to come up with "new", un-heard of dis-eases.

    There aren't any TMS physicians listed at the TMS Wiki's "PRACTITIONERS PAGE" in Colorado, but there are a number of TMS therapists there. Check with one of them they should be able to refer you to a TMS savvy physician for an objective DX.
    Last edited: Jun 16, 2016
  5. plum

    plum Beloved Grand Eagle

    Hello JacketSpud,

    I have a diagnosis of atypical trigeminal neuralgia so I understand the kind of thing you're enduring there. I'm at a similar level of healing as you by the sounds of it. I was doing quite well on a very gentle, mindful and slow healing path and then something very stressful happened/is happening and I've had a flare up. I've found being here incredibly beneficial in terms of renewing my knowledge and deepening my conviction.

    Given that medical science has pretty much nothing for people suffering with any of the facial and head neuralgias, the choice is made for us. In a nice way. The docs do concede that integrative therapies are our best route and to my mind that is a path that leads to tms healing.

    In bracing around the pain, I have created a lot of upper body and facial tension. Naturally this only compounds the problem. I've found that a devotion to swimming and yin yoga (and only yin yoga which is specifically concerned with deep tension release) work like charms to release this build up. I know deep tissue massage would help too but I can't afford that so I don't but if helps you then return to it. I have found it easier to keep my eye on the tms prize when I embrace these lifestyle factors.

    I got very, very stuck on the notion that the doctors and dentists were missing something. I'd reached the point where despite all the tms work I'd done, I was in worse pain than ever before. Then it all went crazy and my gums swelled and went very red around my teeth. I almost lost my mind. Then I went to see my partners dentist (he has Parkinson's so it is imperative that all his therapists are gentle souls with gentle hands), and she sat and talked with me for a long time. Then she gave me the most thorough examination. I treasure the way that before commencing this, she stood behind me and simply cradled my face in her hands. Never has a conventional dentist been so compassionate and empathic. She was the one who broke the curse of doubt.

    There is often a bogey man that people with tms need to tussle with. For most of us it is doubt, or fear, or a combination of both. I think too we can get stuck on associative thinking; "I have this because of that". Possibly these are triggers or original causes in the sense that they tipped our unconscious anger levels over the edge, but in the dwelling on them we only ever tread water.

    Here is an excerpt from Ellen's success story where she finally broke the connection between migraines and barometric pressure.

    * Use the logic and reasoning of your conscious brain to override the unconscious. For example, I was conditioned to get migraines when the barometric pressure changed. When I could feel those beginning twinges of a migraine in response to this, I told myself repeatedly, "There is no reason that a change in barometric pressure should cause a migraine. So stop it brain!." This eventually worked.

    Her full story is here:

    http://www.tmswiki.org/forum/threads/recovery-from-20-years-of-fibromyalgia-and-a-lifetime-of-migraines.7924/#post-43808 (Recovery from 20 years of fibromyalgia and a lifetime of migraines)

    Hope some of this helps.


    Plum x
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  6. JacketSpud

    JacketSpud Peer Supporter


    I commend you for doing so well coming this far in your aTN. I was diagnosed with that too, but I know the dx was incorrect. The pain in my face is bad, but NOTHING like what I've heard described or as bad as my head. I'm pretty sure mine is more akin to TMJ pain. So hugs to you for working so hard. I think you are right, my biggest issue with TMS is the fear. For instance. Sometimes I'll stand up and my head will throb then it passes, I'll walk to the bathroom, stop walking, breath and it will throb. By throbbing I'm mean feel like someone is bashing my up the head with a metal baseball bat repeatedly for a minute. The fear that I'm stuck it's this forever can be overwhelming but I would just quote something I'd seen on a video on the TMS program "it's not moving that causes the pain, it's fear that moving causes the pain that causes the pain". I can't remember the name of the therapist in the video now but anyone who has seen it will remember it - he's talking about Steve Martin having panic attacks in the movie theater. That was a real turning point for me. However, I am not finding it so successful right now. I think because my fear has become so strong. I can't help thinking that if it's the altitude then I am pretty much stuck with it. I've tried to use the same technique "it's not the altitude that causes the pain ... But I'm having a hard time believing myself this time." The crazy part is, the evidence is perfectly clear. It got better at sea level but it took eight months to get to a point where I was doing really well but I still had bad days, I still had the occasional major flare up. So that tells me that it wasn't altitude but then my brain says "maybe it only flared up because you weren't fully well because you hadn't been down from sea level long enough to fully recover". Even I know that's crazy talk, but my brain is still struggling with it. Ironically my head was so bad when I visited my home country, my sister, and my narcissistic mother I took enough over the counter meds to send my liver enzymes sky high. I came off them to see if my liver improved (it did) and the first week was sheer hell but after that it improved for a while. I had almost four weeks almost pain free, and then I came to Colorado and put an offer on a house (same day). Even I can see that doing this fills me with anger. I am doing what I believe to be the right thing for my family but it's not the right thing for me (please. No telling me that I should follow my heart and my kids will adjust, my family and I have been over thi more times than you can imagine, and for now this is the solution we decided upon). I mean, really, it looks like TMS, but then the doubt creeps in "what if it isn't". I'm repeating myself a lot here. I apologize.

    Thanks for the link. I'm going to go read it. It sounds a lot like what I do!

    And good luck with your aTN.
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  7. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Well, I seldom recommend physical modes of fixing TMS, but massage is useful for reducing the rage/soothe ratio at least for a little while. But a TMS'er shouldn't go into it thinking it's going to "fix" their emotionally induced physical issues, but for some r&r. That being said, I did have a great cranial/facial session once by a very intuitive practitioner. You may want to look into cranial facial if you can find a practitioner who understands that you have TMS.

    As to the Colorado high causing your pain, as a tennis player and not a white-coat, I would think if it were atmospheric pressure causing your pain it would leave rapidly as you descended rather then taking eight months, that doesn't make any sense to me.
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  8. plum

    plum Beloved Grand Eagle

    Thank you sweetheart. I appreciate the hugs and warmth.

    Honestly I think you're dealing with some shit right now that is making the tms brew bubble away. Be nice to yourself. As for choices we make...I can tick the self-sacrifice box too but I'm pretty much at peace with it now. I struggled a bit for a while mostly because I thought changing my situation would rid me of the pain but I knew in my heart that was bs. Jon Kabat-Zinn wrote a book called 'Wherever you go there you are'. Pretty much sums up the inescapable nature of self.

    We do what we do and make the choices we make because we love our people. It's a no brainer. More power to you.

    Doubt is what it is. It's only trying to protect or guide us. The great thing about emotional healing is that it is a win-win situation. A bit rubbish at times but worth it in the long run.

    Take good care and don't be a stranger. x
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  9. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    p.s. People climbing Everest only need to spend about 3-4 weeks at Base Camp for acclimatization , which is over 17,500 feet.
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  10. plum

    plum Beloved Grand Eagle

    Tom, some time ago I watched a masseur on youtube who explicitly made the point that the only thing he does is help people to relax because they haven't quite got the hang of doing it for themselves. Isn't that pleasing? No woo woo or trigger points or blah of any kind. Just a straight up appraisal and recognition. There is hope my dear.
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  11. Renee

    Renee Well known member

    Years ago I moved to a high altitude city and had horrible altitude sickness for about 6 months. But then my body finally adjusted. It sure seems like anything that turns into a chronic situation is TMS because the body does seem to heal and/or adjust on its own.
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  12. plum

    plum Beloved Grand Eagle

    A superb articulation of the daftness of tms.
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  13. Ellen

    Ellen Beloved Grand Eagle

    During my decades of chronic pain I was always looking for the trigger--climate, diet, allergens, etc. But once I learned about TMS, I found the common denominator--psychological issues. Only then was I able to recover.

    For the vast majority of us, our bodies are able to adapt to changes and challenges just fine. It's our thinking/emotional/behavioral responses that can become too rigid.

    Even the idea that extra stress in our lives will automatically lead to a flare-up of pain or a relapse does not have to be true. This is also a conditioned response. We can and do endure a lot, and we can do so without pain.

    Try to relax and enjoy the beautiful place where you live. I love the beautiful way the light shines at high altitudes.
  14. Ryan

    Ryan Well known member

    Well said Ellen
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