Spine, posture, muscle tension & anxiety

General General TN & GPN (Old Site)
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Since my previous thread “Forward head posture and rounded shoulders” was closed, opening a new one to update progress.

Initial Trigeminal onset June 2016,
Therapies tried - Accupuncture, Massage, Chiro, Osteo, Physio, SCENAR.
Drugs tried - Lyrica, Gabapentin, Diazapam.

From onset it gradually got worse until peak low Xmas 2016, constant zapping, around then we realised there was a postural connection and have been trying different things to perfect our treatment protocols.

All the therapies tried seemed to have some benefit initially, but then proved to be ineffective with cyclic relapses so we can only assume that they were just corrolated to the underlying up cycle phases we are not using any external therapists at this time.

Symptoms have been steadily improving and in recent months she only gets zaps (3-5/day) during cyclic relapses, but during the upcycle it fades back to just the shaddowing sensations on right eyebrow & side of nose.
The most effective treatment appears to be the upper spine, shoulder & neck massages that I give her.

Daily walking, noon siesta, hot baths, posture awareness, anxiety management, light Tai Chi & Yoga, gentle neck stretches & exercises are also part of our protocols, we feel confidant that we are shooting around the target, but haven’t found the bulls-eye yet.

We have an appointment with sports physician on Wed to see if he can help us further our progress.

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I have had def ATN improvement with head / neck / shoulder massages. Posture at my desk at works does seem to play a teeny tiny roll as well and of course better posture never hurt anyone anyway!

Sounds like you’re on the right management track. I think relapse is a fact of life, tho. Not sure that will ever not happen.

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Hi Sparky
I always go to a rating scale.
How would your wife have rated her pain a year ago and how would she rate it now?And how come she did not try trileptal or anti-depressants?
I am glad she is doing better and that you have been able to keep up your commitment.

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azurelle
I do believe that a significant number of TN cases are specifically spinal related in the sense, there are many conditions where there is an issue of referred pain, so even though you may feel it at the peripheral nerve ending, there is nothing to say that the problem lies there. Research is exposing more an more situations like this where migraines are relieved by neck/shoulder therapy, T4 syndrome, upper thoracic outlet syndrome and many others, although they may all result in sensation dysfunction at the peripheral nerve ending, the cause lies much closer to spinal mis-allignment issues.
Don’t know if others have had the experience of central chest pain, I have, used to think I was having a heart attack, stabbing pain front/centre chest, but the issue lies in the spine where the relevant nerves exit. If you think of an example with a garden hose, turn the tap on, no water comes out of the nozzle, if you can’t see the entire hose how can you determine where the constriction is, is the problem at the nozzle (your face) or is the problem at the tap (your spine)? If you find any things that help you, increase the frequency of these, likewise reduce frequency of any things that seem to be detrimental.

ellen 5
Hi again, as for antidepressant thing, she is more anti drugs than me, sometimes I really have to push her hard just to try things out to see if they will help her, but it is primarily because we have been able to manage ok as we are. Having said that she is still taking 300mg Gabapenton daily, not sure if it really helps but we don’t want to upset the applecart at this time, we have also renewed a script for Diazapam (valium) primarily to help manage accute lapses, if we can minimise dips, then it should be easies to excede previous peaks.
Regarding the pain scale, there are many ways to consider this, sometimes she gets frustrated and hopeless and I have to remind her of where she really was 12 months ago, humans always acliamitise to the recent current level of discomfort, hence are usually in a slight state of depression because they can always desire more comfort, ie glass half empty. A few weeks ago she admonished me because she couldn’t remember the last time that I made her one of my wonderful smoothies, I looked her straight in the eye and asked her “well what’s that telling you” she paused then the penny dropped, she realised that she wasn’t sucking all her food up through a straw, at this time she’s happily chomping chops & raw veg, just to add I’m still trying to get through all the pumpkin(soup) I stocked up on 12 months ago. My guess at the pain scale would be, 12 months ago continuous Tic Deloureux being 10 to now in her lapses goes to 3-5 zaps per day, which I would put down to a 2, and I’m also applying this in an exponential scale, otherwise on a linear literal scale I would have to rate her at somewhere around 0.1, but in general terms she is 10 times better than she has been for 12 months.
We saw the new doc yesterday, all looks good at this stage, have some new ideas to evaluate, he is pleased with our directions and can see ways that he can support the current process, so we will continue down this track, “steady as she goes”.

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Thank You
Wishing you both continued wellness in the new year

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I have noticed my posture does affect my shocks. I can’t turn my neck and keep that way for any extended period of time, so I am always moving to the center at movies and in classrooms and what not. And it is awesome her pain had gone down from last year. I would try to encourage more medication, because 300mg of Gabapenton is still really low. I am on 1200mg per day, and I am nowhere near the top among users here.

So keep working on posture, and as it sounds, you are keeping accurate measurements of pain. I have an Applewatch, and they have a CLickr app that let’s you count anything, and so I use it to record all of my shocks. Before surgery was above 50 everyday, now after surgery a good day is less than 20, but I’m not taking as much oxycodone as I would like because in China they severely restrict how much you can get.

Hope she keeps improving, and you are an awesome husband. I’m sure she appreciates everything you do more than you know. I know I feel that way about my wife.

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Recently my pain has been almost unbearable. They have given me pain medication so I can sleep because I have found that every time I sit in a chair or lay down to sleep the pain returns with a vengeance. I have just recently noticed however, that when I am upright and walking around the pain disappears. I am considering going to a chiropractor to see if a spinal alignment might help. Has anyone gone this route and if you have did you see any improvement.

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We did try a Chiro for a while, had 3 or 4 sessions, but it became evident he didn’t have a structured treatment plan for TN, we found no benefit and possibly had some added aggravation.
Having said that I have read that some people have had positive results, particularly with specialist “Upper Cervical Chiropractors”

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Just before Christmas she had another setback, it was almost expected as she loves to spread the joy but it’s a bit hard with the TN, so Anxiety & depression set in, protocols laps, good habits go bad & the TN goes off. She was getting regular zaps, though it was only 5-6/day, this was only because her facial expressions and speech were instinctively restricted.
So time to knuckle down again we ramped up the the Gabapentin to 3x300mg/day and added 3x2.5mg Diazapam we built up to this over 3-4 days and she was fully doped up, still having a few zaps, but they were dull and “far away”, within a couple of days we reduced the Diazapam to 4x1.25mg which brought a bit of clarity back.
We noticed the tension/activity would start to build around 8am, she loves sitting in bed nursing her coffee(espresso) in the morning watching some TV. Natural cortisol levels are highest around 8am, to kickstart you out of the Melatonin coma (sleep), add serious caffeine which also boosts cortisol and you’re ripe for Fight/Flight or an anxiety attack.
So replace coffee with Chamomile & Lemon Balm tea, which have the opposite effect, add in “Calm Advantage” a mood & stress benefit suppliment, get out and walking before 8am to burn off cortisol and re-establish exercise & posture program.
We begin to turn the tide, each day a little better than the last, the last 2 days no zaps and meds down to 2x300mg Gaba & 1x1.25mg Diazapam dopey feeling gone we expect to be back to the 1x300mg Gaba again by the end of the week.
Lesson learned, don’t take your eyes off the ball, the game is not over yet.

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With the recent Doc visit a few weeks back, it was positive overall, a couple of surfaced, one of these being the TMJ dysfunction issue, although I had done some basic research and neither one of us thought she was a jaw grinder/clencher the Dr disagreed and suggested we investigate a mouthguard(splint). We did buy an el cheepo as suggested it was not really a goer as she is picky at the best of times and even I thought it was like chewing on an oversize plastic lid. Though the guard does look like a flop at this point it did spur me on to deeper investigations and I realised that all jaw functions are trigeminal whether sensory or motor and once I realised that many TMJ symptoms are reffered, ie not related to jaw but expressing as headaches, ear problems etc. Though I do think it a long shot no reason not to eliminate any TMJ issues, so we are looking at easy things we can do to support this issue.
Another condition I looked at a while ago, but was recently re-inspired was T4 syndrome, this was identified in 1986, but very little research has been done since then, it refers specifically to dysfunction of the T4 vertebrae which result in aggravation of sympathetic nervous system of arms and head which result in headaches, neck pain, numbness/pins & needles in arm & hands and other related symptoms. Resolution is achieved through physical manipulation of spinal musculature, like massage and postural correcting exercise & habits. There was a more recent suggestion to rename it Upper Thoracic Syndrome as it was found other spinal factors were also in play outside of the T4 vertebrae. Though my partners symptoms are not text book T4 the fact that the best results we have achieved of all the therapies we have tried were through massage & postural management that we developed ourselves, which sounds very much like a parallel experience to the T4 syndrome.
When you begin to look at other spinal issues like thoracic outlet syndrome & tension headaches you begin to realize there is a whole series of referred pain/dysfunction issues all the way down the entire spine depending on where the vertebral problem is and what nerves exit at these vertebrae.
With my partners issues they seem to start in the mid shoulder area, where she first starts to feel tension, we suspect it is primarily in the rhomboids which connect scapula(shoulder blade) to T1-T4, their role is to lift & pull back shoulder, so therefore correct rounded shoulder posture.
What works against this is hunched desk posture, working with hands extended, detailed work & breasts pulling the body forward, so I begin to wonder what contributes to female dominated conditions, if we take genetic susceptibility and add forward heavy chest area, aggravate this with Bra’s by keeping breasts extended(leverage force) rather than letting them sag & stay close to body, add detailed close hand work rather than hard manual labour (traditional labour divisions) and just to top off add higher levels of anxiety and we have a condition in progress. This is just a hypothetical, if I was to analyze a male condition I’d probably find just as many flaws or more.
Back to muscles, the next thing we see is tension in the Levator Scapulae, which connect top of shoulder blade to C1-C4, noting that the trigeminal nerve root extends down to at least C2 & maybe C3, with my partner there is a distinct elevation of right shoulder as TN aggravation increases.
The final observation is she has tender/pinch points on outside shoulder blades, particularly on left side, which is odd as her TN activity is on right, we haven’t been able to to define what this is yet, but working on it.
I’m caught up in this because all the resolutions to the above mentioned conditions involve muscle relaxants, massage, exercise & postural correction which are all the areas we have isolated that provide benefits.

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Still travelling well, had a couple of small zaps on Sunday and one small zap Monday, but we did identify a number of factors which may have contributed to that like skiping siesta & calming smoothie, so still on track to scale back the meds this week, dropping out the diazapam tomorrow, so then just 2x300mg gabapentin for a few days before we go back to just 1x300mg gaba.
We had an interesting experience yesterday about 6.30am then around 9am I made up her smoothie, which also includes some chamomile & green tea for the calming effect along with blueberries and lots of good stuff. Then about half an hour later on the walk she started to feel a bit dopey, like when her meds were much higher, being 3 hours after the meds all I could assume is that the Gabapentin was enhancing the calming effects from the smoothie contents.

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sparky – you seem to be constantly changing doses of medications. Daily medications like gabapentin work better when used consistently. You want the level in your body to be maintained from day to day, I tend to think upping an lowering doses all the time would actually be a negative in the long run. Why is it that you’re changing doses so often? Partially gabapentin as that is not an as-needed medication for acute treatment.

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It may sound that way when you read through, but it’s not quite like that.Firstly we only increase meds when she has a flare, we always scale up and then scale down as the flare subsides.
A bit of background, when she peaked with her TN experience 12 months ago, endless nights screaming and crying in pain, we went to hospital and they prescribed Lyrica, we followed the directions but it was useless, she had a vague head but the intensity and frequency of pain was no better, when the script was out we didn’t bother to renew it.
Throughout the process we have been fine tuning our protocols, trying different modalities and gathering information, over the last 12 months although she has had relapses, each one is less severe and more quickly resolved and most of these were managed without any meds at all.
All through I have been gathering notes & tips on what we might use to support our process, here on this forum I read up on the Gabapentin, someone mentioned they had used it to manage hot flushes, my ears pricked up as she is going through early menopause symptoms and when the Hot Flushes flare, so does neck tension and the Trigeminal as well, so if Gaba was used for Hot Flushes as well as TN then it was worth a try.
We have found that teamed up with Diazapam it is a powerful tool to control flares rapidly, 1 week instead of 3, we know we can do this without meds, but if meds can get us back on track quicker, then we will use them to do that.
I understand fully that many of these meds take time to build up and be effective and I take all that into account, but I do have a scientific and analytical background and if I could find a TN Hypothesis that could hold water I’d go with that, but they all fail quite readily, so we need to follow our own journey utilizing all the information we can acquire to make the best informed decisions that we can.
We use the meds as a tool to support the tight spots, but to manage and reverse the condition we are applying physical manipulation, exercise & postural correction.
Just a left field question, have you ever thought what “spontaneous remission” really means?
To me it says that the medical profession is mostly fumbling around in the dark, sometimes they are close to the target and other times they may as well be on the dark side of the moon.
Either the diagnosis is definitive death or not, you can’t just pull the spontaneous remission card, why doesn’t any specialist ever diagnose a “Spontaneous Remission”?
In my experience with medical specialists explaining conditions, if you simply ask the infantile question of “But Why” to each of there answers within 3-4 “But Whys” if they are honest they admit they don’t know, otherwise the retort “You don’t need to know that!!!” if they are feeling vulnerable in there scope of knowledge, I’d always choose the honest one.
I am a seeker of truth and “Truth fears no inquiry”, so I will argue, defend, explore or concede, because there can only be one truth and it is indestructible.

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Thanks for clarifying how meds are being used, I was thinking you didn’t have a baseline medication protocol you were using, and, working in a pharmacy myself I found it concerning! Daily meds, after all, work best when taking daily.

As for the spontaneous remission thing… I think that’s just another way of saying our bodies are amazing, complicated things that are full of surprises. I think diagnosis are rarely definitive. There’s a reason it’s called the practice of medicine! As a whole we simply do not understand the way we work. On top of that, there are so many variables at play every single second of our lives I find it amazing anything gets figured out.

I’ve had two different doctors advised me to expect spontaneous remission for two different conditions – ATN and lymph edema. For both of these things I was told some days will be better than others and no one knows why. I’ve been told I could go hours, days, months, or even years without a sign of either issue, or, I could go hours, days, months, or even years with nothing but troubles.

Maybe it’s the doctors I’ve chosen to work with – I only go to women as study after study has proven women are better listeners and better managers of chronic health issues (less of a drive to fix, more of a drive to manage and provide care). And I only go to women who are willing to hold a discussion with me and tell me when they don’t know something. I’ll show up at an appointment with studies to discuss and research to go over and my doctors are always willing to review new-to-them info with me.

Knowledge is always power. I think the key to all of this is learning as much as you can.

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Good stuff, gonna keep it short, liked the note on the practicing physician, something I’ve always questioned in the terminology, I don’t want someone to practice on me, I want someone who already knows what they’re doing.

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In the med profession, whether male or female, whilst I understand management and care, on the whole misses the point entirely which is why I like reading sparky1’s approach, totally proactive and I hope he arrives at the answer if indeed there is one to be had, but is looking and looking hard.

This med that med, ok we get some potion which alleviates symptoms, great, but then we stop looking. No one has TN for the lack of a medication. Sparky1 you set the standard I would pursue if my wife/ child was suffering. You have a lucky family and I wish you all the best. I wish more folk would mirror your mind set.

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Thanks for the compliment I really do appreciate it, but I have plenty of personal demons too, so there is probably some balance there.
Family gatherings often descended into argumentative “Bloodbaths”, hence these skills were honed early, no statement would ever be taken at face value, it always had to be proven and backed with evidence, which is fine for those in the know but does not bode well when that behavior comes out in more reserved settings.

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Hi sparky1 and everyone in this thread,

I just want you to know how heartened I was to read these posts. It feels so hopeful. A million thanks for sharing your observations and insights here. I am new to this so the learning curve will be steep but I hope to gain as thorough an understanding of possible remedies as you clearly have.

And sparky1, you sound like a wonderfully supportive, nurturing husband – just so lovely to see.

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Time for an update,
Things have been following a fairly linear upward trajectory and her condition has been steadily improving. We had a big test as I had to go away for a week and she would have to cope home alone, I did prep some meals etc to minimise kitchen time and also cut up some Diazapam tabs so that if she had a relapse she she could just ramp up meds to get into the dopey state until I got back. Thankfully all went well and even though I wasn’t there to massage her which was a daily experience, some days 3 times, turns out she didn’t miss a beat and actually even improved over that week. I’ve been back over a week now and she hasn’t had any shocks for longer than that, so we are tentatively positive that we are on the correct path.
The protocols remain the same,

  1. Daily massage, neck shoulder & upper back mainly in addition before I went away we bought her a neck/back massage strap, it has two rotating knobs & heat function so she can position massage knobs as required so she doesn’t have to wait for me.
  2. Postural awareness, chin tucked, head & neck straight, chest out, shoulders rolled back, she does the checklist repeatedly through the day, when walking, cooking, gardening etc. another good pointer is, with arms hanging by your side, to rotate thumbs to point away from body this forces the shoulders to roll back and push chest forward and up. She also uses an inflated chest protocol by taking a deep breath filling chest, then holding that posture for a few minutes whilst shallow breathing, this seems to give neck & shoulder tension relief.
  3. Stretching & exercises primarily geared to correcting rounded shoulders & forward head posture, so stretching & opening chest muscles as well as strengthening & tightening back muscles, particularly the Rhomboids & Trapezius, she does these all trough the day, mixed in when walking etc. the idea is to do smaller sets more often so it just becomes part of normal life.
  4. Anxiety/Stress management, although this has been part of the protocol from the start, we have come to a new level of understanding here. Everyone spouts this type of language but very few actually understand what they are talking about, mostly it is to run away & avoid stressful situations, which ultimately is a flawed philosophy. Stress is not what the world does to you, it is how you respond to what the world does, respond not react is key language here. This is all good where there is a moderate level of Anxiety, but where levels become higher rational processes become nigh on impossible, you effectively become incapable of a rational response, so you revert to reactionary/habitual pathways, which is exactly what you don’t want. That was the “penny drop” moment for me, until you take the edge off, advice is useless if the recipient is incapable of implementing it, so that’s why we dropped the coffee & introduced calming compounds through diet, once the biology shifted the psychology was calmed and capable of rational processing. Although the effect was very subtle, it’s power was in accumulation, so as time went on I could see she was gaining robustness in her behaviours and she was not getting caught in the anxiety spirals. Now the real work can begin, to re program herself to adopt new behaviours and responses and release herself from the old patterns which were a driving force in her neck/shoulder tension, simple statement but very difficult to enact because ego will fight you all the way because ego is all about defending who you think you are, but she’s making great progress and has seen positive changes in herself.
  5. All the other bits, daily hot baths, midday siesta, walking, tai chi, yoga, meditation and other calming and relaxing protocols, mainly for symptomatic relief, but they also contribute towards the remedial actions I think we have moved considerably into into alleviating the symptoms now we are focussing on adding more remedial actions (posture & psychology) which will take much longer.

Although it was over 12 months ago that I realised there was some kind of postural connection, it has taken all this time for us to fumble through with protocols & practitioners to find what helps and eliminate what doesn’t. The sensations around her eyebrow and nose have also reduced and when slightly active feel more like a chill than electric shocks, so that shadowing of those old pathways are also subsiding, so we have some level of success, it occupies less of our headspace and she is also starting to delve back into her artistic pursuits. Victory, if there is such a thing is a long way off, at this point in time the ball is still in play, just because a goal has been scored does not mean the game is won, we are having a bit of a breather, but it will be time soon to knuckle down even harder and focus on promoting the healing process and supporting that as best we can.

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Wrote a reply and then deleted it, in a nut shell, your the man. Might ask is your other half on board to the same extent? What are her feelings towards your protocol? Do they align with yours?

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