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Does anyone understand the trigger of POTS/Dysautonomia re: bending from a standing position?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Dec 16, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I have Autoimmune POTS (and general autonomic problems) and at this point it is actually easier for me to stand and walk than it is for me to bend from a standing position to pick something up from the floor. And the item does not have to be heavy and I could be picking up a pencil from the floor.

    Prior to my treatment with IVIG & Rituximab, I could not stand without wheelchair for more than 30-60 seconds vs. now I can walk around without wheelchair (in segments). Prior to treatment I could not open a water bottle or my front door or squeeze a shampoo bottle by myself vs. now I can do all of these things and have normal muscle strength.

    However, even though I have random days where this is better, in general (at least 90% of the time), I cannot bend from a standing position to pick up something from the floor without triggering a full-blown POTS episode which includes tachycardia, severe shortness of breath, dizziness, and chest pressure/pain.

    At the moment, I have to give my dog a bath w/a medicated shampoo every 4-7 days. I cannot bend down to pick her up and lift her into tub, but if someone does this for me, I can do her entire bath by myself (and prior to treatment there was zero chance in hell that I could give her a bath). I did it today and I was able to get the shampoo on her, scrub her for the required ten minutes, fill container with water repeatedly to wash her off, dry her off with towel, etc. Yet I cannot bend down to lift her into the tub.

    This might be a bad example b/c she weighs approx 16 lbs and does not cooperate for the bath. But yesterday I had to pick up stuff from my patio (as light as a piece of paper) and it triggered full blown POTS episode where I was literally gasping for breath when I spoke. So in order to pick up things from the floor, I have three options. I either use my motorized wheelchair and pick them up from a seated position, I pick them up with my foot (if possible), or I leave them and wait until someone else can help me to pick them up. Sometimes I feel "normal" and I forget so, for example, I bend down to pick up my dog's water dish to refill with water (it's very lightweight) and I suffer for hours b/c I did this!

    I used to also not be able to lift my arms over my head but this has improved. But the mechanism of picking something up from floor (or actually just the mechanism of bending down to TOUCH the floor) from a standing position, is not improving. And on some days, it feels like it is actually getting worse. This is one of the things that very quickly reminds me that my autonomic problems are still here.

    Does anyone know what causes this particular autonomic problem or how to fix it (aside from just not bending down from standing)! I have other autonomic problems, too, but this one is really aggravating me at the moment b/c I've made the mistake several times in the last few days and really paid the price for it. When I used the wheelchair 24/7, I did not pay attention to this issue as much. But now that I am standing, I want to bend down to pick up a pair of shoes (or endless examples) and realize that I must do all of this from a seated position. Do others with POTS have this issue or am I unique in this way?
     
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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    My son experiences this and has gotten quite good at picking things up with his feet!

    I have no idea why it happens. Perhaps bending over increases the blood pressure in your head, which might overwhelm the parts of your brain responsible for heart rate, BP and respiration. Maybe it increases pressure on your diaphragm and stimulates the response. Or maybe it generates some other input, or interrupts normal input to your impaired cardio respiratory system and it just can’t compensate.

    A grabber should be helpful. Amazon and drug stores have them. Can your dog jump up into your lap? If so, you could wash him in the kitchen sink, just sit down in a chair next to the sink, call him up into your lap, stand up, and pop him in the sink, no bending required.

    Can you squat? Maybe squatting to pick things up, instead of bending, might help.

    An occupational therapist might be able to help you adapt to the bending limitation.
     
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  3. MastBCrazy

    MastBCrazy

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    Have you tried an anti-G counter maneuvers (tight cross legs, squeeze tight, wait for head to clear, then try squatting SLOWLY with legs, maintaining height /elevation of the BP sensors at heart and neck)? I find it can help temporarily, but for me, the resulting headache can well offset any benefit. Slow is key, to use inertia to benefit: an essentially 'squishy' network of veins, a fast change in elevation is a fast change in pressure (blood in this case) - especially relative variations in change in height (i.e. the bend with the elevation is a double problem as the elevation difference head to heart disappears - the less 'work' your vascular system has to do, the better). A perverse engineer (that understands fluid mechanics).

    Hoping something helps.
     
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  4. BadBadBear

    BadBadBear Senior Member

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    They make small devices at the pharmacy (like Walgreens) made especially for picking things up. They are inexpensive.

    Alternately, some of the dog poop scoops with a pan on a long handle and rake are great for all kinds of outdoor cleanup.

    Is there any way someone can make a ramp for your dog so you can lure him up to a height where you can safely lift him? Maybe some doggy steps by the bed so he can get up to an easier height?

    I have similar issues but I am in the NMH group rather than POTS. Used to love gardening, but now I get sick if I bend over much. My symptoms are not as severe, however. I can bend down a few times before I get into bad shape.
     
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  5. Ravn

    Ravn Senior Member

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    How curious! My POTS progression was exactly the opposite. Earlier on when my ME was mild-moderate I could walk no problem, stand reasonably well for 15-20 minutes but could not bend down without triggering the whole POTS shebang. Never found anything that helped apart from not doing the movement, sorry.

    Now with the ME deteriorated I'm the opposite, bending down fine, as long as I have something to cling to to get myself up again. But standing will immediately set off the POTS with clean faint from tachy within 5 minutes last time I was game enough to experiment.

    Could we conclude from that that your new problems actually mean you're getting better? Here's hoping!
     
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  6. boolybooly

    boolybooly

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    Have you tried keeping your upper body vertical when lowering yourself by bending your legs and if necessary sitting down while staying upright so your arms can reach the floor with your chest, neck and head vertical?

    As I understand it the autonomic system measures pressure in neck blood vessels and compensates by increasing heart rate if the pressure drops. The logical workaround to any problems with this is to keep the heart neck and brain in the same relative positions so you end up looking a bit like someone doing Tai Chi. Back straight, body vertical and movement coming from legs and arms. Then there are minimal relative pressure changes in head, neck and heart.

    I have the opposite problem that its slow to respond since ME and I have been known to faint as a result of standing up from lying down. You seem to have an overreaction instead but at a nervous level excitation and inhibition are both just signalling processes and quite similar to each other despite the different effects they have. Inhibition is an active process.

    Due to the nature of feedback loops its possible that over excitation may be a failure of appropriate inhibition and regulation as well as over activity of excitation. ME nervous systems are known for being over active and hyper responsive. Also speculating a bit here, its also not impossible for inhibitory activity to inhibit itself... so over active nerves could lead to a reduction of inhibition and too much excitation at the same time, which would cause a wildly excessive response.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much to everyone for all of the replies and it is reassuring to know that I am not alone with this weird problem!

    NGU, all of your theories make a lot of sense and I bet one or all of them pertain to me. Multiple doctors had told me in the past that I was not getting adequate blood perfusion to my heart and lungs when I stood. This is improved b/c I now have no limits with standing in one spot (like for washing dishes) and I can walk around my apt without wheelchair in small segments at a time. But other autonomic problems significantly impact me like bending down.

    What you said makes a lot of sense re: overwhelming the part of my brain responsible for regulating HR, BP and respiration or also putting pressure on the diaphragm and triggering a response. Whatever it is, my body cannot compensate for it.

    That is a phenomenal idea! Do you or your son have a particular brand of grabber that you like? I need one that would be lightweight and could be used from a seated or standing position.

    My dog is a bad example (on my part) b/c she can jump onto bed or do many things when she wants to cooperate but she HATES the bath and makes herself like dead weight and tries to jump out of the tub. It's a high tub but she will jump out if sliding shower door is not closed. My kitchen sink is too small for her and b/c she has a skin infection, I also don't want to expose it to where I wash my dishes. But even if all of that were not an issue, she would jump out of the kitchen sink and get hurt.

    I have a great system with the tub b/c I sit on a waterproof footstool in the tub while bathing her. I just cannot bend down to pick her up or lift her. I think I will always require help with this part which is okay, vs. it is more annoying when I drop something as light as a key or a pencil but cannot bend down to pick it up and have to go get my motorized wheelchair to pick it up from a seated position. I often forget and think, oh I can just pick it up and will be fine and then I literally suffer for hours to get my HR, breathing, and chest pain back on track.

    I am honestly not sure. Prior to my treatments, I could not squat to save my life b/c my muscles were too weak. I really am not sure about now but I suspect that I still cannot.

    I actually have what is called "poop rake" and it is the best invention ever made. I have a chair on my patio and after she poops on the grass, I sit in chair and use the rake to scoop it all up. If I had to bend over 3-4x to pick it up from standing, I would be disabled for the rest of the day. But sitting and using rake, it has no impact on me whatsoever.

    This is what I was wondering and there are certain things where I just made modifications b/c I simply cannot do the action or movement. For example, my apt has a microwave in kitchen that is very high (I am short) so you have to lift the heavy plate over your head to use it. I cannot do it and never will so I bought a countertop microwave that I can access from standing or from wheelchair and it causes no issues for me.

    I have never fainted but prior to my treatments, I could not stand for more than 30-60 seconds. I totally relate to what you are experiencing (minus the fainting part).

    I have wondered about that but am not really sure.

    This is basically what I do when I pick up things from a seated position. I can now pick up heavy packages from the floor and lift them onto my table and open them (all from a seated position) which I never dreamed I would do again in my lifetime. But no chance I could do this from a standing position (at least not now).

    Thanks and will try to do this but not sure it will work from standing. I guess I could actually sit down on floor and pick up item and then stand up with it (if it is lightweight).
     
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  8. Sushi

    Sushi Moderation Resource Albuquerque

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    Squatting is a well-known work-around for POTS and OI patients. I remember reading about it years ago on the Dinet forum. One nurse (who obviously had to be on her feet a lot) said that when she felt OI coming on, she would make-up an excuse to squat--like pretending to look for something on a low shelf. I don't know why it helps but since reading about it years ago it has been part of my OI repertoire and it does help. I think this could be translated into a work-around for picking things up from the floor too--that is if squatting is something your muscles will allow you to do. Squatting would let you reach the floor and at the same time might help any POTS symptoms going on.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and I will definitely try it at some point although I suspect that my muscles are not strong enough for me to squat and definitely not without something to hold onto to get up and down. But it is a great idea and I may be able to do it now and just don't know it?! I am finding out each day what I can and cannot do now which is weird (but good).

    Prior to my treatments (about 1.5 to 2 yrs ago) I was in the restroom at my Endo's office and couldn't stand for even 30 seconds so I sat down on the floor (to avoid falling) and then I could not get up and the nurse had to help me to get back into the wheelchair which was very embarrassing. None of this would be an issue now b/c I can now walk to and from the bathroom in public places without any assistance (unless the door is incredibly heavy with a spring hinge like a fire door and then I need help opening it).
     
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  10. Bander

    Bander

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    Your question makes me think of a line of research done by Dr. Peter Rowe. He has found that patients with cfs have limited range of motion and that even something as simple as examining them and stretching their limbs can bring on symptoms of cfs. I don't understand it very well, but I decided to try to avoid stretching too much after reading about this.

    In a study he performed, medical personnel performed slightly different examinations that patients would not be able to tell apart but in one case they were inducing true neuromuscular strain and in the other case they were not inducing strain. As the study abstract mentions, "those with CFS in the true strain group reported significantly increased body pain (P = 0.04) and concentration difficulties (P = 0.02) as well as increased composite symptom scores (all P = 0.03) during the maneuver." That sounds a lot like what you're describing.

    You can listen to him discuss it as the tail end of a Solve ME/CFS webinar or you can read about it in this article or in the study itself.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I know whatever is happening in my case is autonomic even though I do not know the exact mechanism. I am able to do stretches while seated or lying on the floor and can even do them standing if I remain standing (like stretching my calves against the wall, etc). But bending to floor from a standing position triggers a full-blown POTS episode about 90% of the time (with gasping for air, tachycardia, BP drop, dizziness, and sometimes chest pain). My muscles can physically bend down but my autonomic system mis-fires or goes into complete chaos. It used to happen anytime I stood up from wheelchair and thank God this is over (at least for now, no idea if permanently). But bending down from standing is one of my worst POTS triggers. I also had severe muscle weakness (where I could not open a water bottle or cut a piece of paper with a scissors) but this is gone now, too... and I hope forever!
     
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  12. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    We are using a toy grabber left over from his younger days, but Amazon has a very large selection of them.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and I added it to my never ending list of things to look up on Amazon. It was a great suggestion! :star::star::star:
     
  14. Wayne

    Wayne Senior Member

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    Hi @Gingergrrl,

    I have this same problem, though "usually" not as severe as you describe. Raising my arms over my head and stooping down to pick something up can both do me in for fairly long periods of time (sometimes hours). I can't say for sure what's causing this symptom for you, but in my case, I think it has to do with my own cranial anatomy.

    I've looked for answers for years, and have experimented with various kinds of manipulation that might help me try to correct my cranial structure. Chiropractic helped some, but I feel doing an Atlas Profilax "repositioning" and a sinus technique which expands sinuses also helped, probably even more than I realize.

    I just ran across the following (from THIS ARTICLE) as I was trying to find some good information for you on this sinus technique, sometimes known as "nasal specific". I think it has the potential to smooth out some of the short-circuiting that occurs in those of us with Dysautonomia. In short, I'm suggesting the answer to your question "may" be somewhere in the following information:

    Now that we have a general overview of the cranial nerves we can point out a few important elements that are worth noting. These elements will lead us in a general direction and help us form our ability to understand dysfunction that may in many cases manifest itself in the forms of disabilities.

    The Hiatal Hernia Syndrome is the pinching of the (X) Vagus nerve this pinching restricts the flow of cerebrospinal fluid causing varing degrees of dysfunction. The pinching of this nerve causes the Vagus Nerve Imbalance (VNI). This imbalance usually causes hyperexcitability, however there have been cases where decreases in energy flow have occurred.

    From this imbalance and enhanced state of excitability any given number of organs can begin to tighten/wind up and malfunction. The diaphragm will be directly affected and normal breathing patterns no longer occur. Children with learning disabilities and behavioral disorders, such as Attention Deficit Disorder and Dyslexia almost always have this imbalance.

    In this case the pinched nerve causes a winding tension that aggravates the body and causes other neurological impulse/information systems to likewise tighten up/tense up, to the point that the individual is wound so tight that you think they were about to break.

    To unwind the tension in these types of cases gentle massaging of the cranium and adjustments in the spinal column will work wonders, also endonasal/nasal specific will dramatically release this tension and will help unwind and lessen the tension that these individuals are in.
    Over time as the body unwinds regular breathing patterns will return, directly affecting the functional capabilities of the cranial nerves and the spinal nerves. The results are indeed effective, the individual/child will be able to concentrate better, hold attention, be able to sit for longer periods of time, and their mental reasoning will be able to grow. It is very important to work towards the effects of unwinding the tension in the individual before one is able to help and further enhance their overall development.
    ...................................................................

    EDIT: -- I have a friend who experienced a serious head injury, and over a period of several months, developed many symptoms of ME/CFS. She heard about this technique from a friend who had used it to completely eliminate seizures he'd experienced since a head injury he had as a child.

    After getting her own nasal specific done, her ME/CFS symptoms all went away. Though I have to say I haven't been in touch with her for many years.​
     
    Last edited: Dec 18, 2017
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Hi @Wayne, thanks for all of your feedback and I really appreciate it as always!

    I am sorry that you have dealt with this too and was curious in your own case how you determined that the dysautonomia was due to your cranial anatomy?

    I apologize I have not had a chance to look at the article that you linked yet but when you mentioned "nasal specific", I wanted to clarify that I have never had a sinus problem or infection in my entire life. Versus, I have had severe neck pain from two triggers (a car accident in 2006 where my car was struck and flipped upside down) and an injury to my right arm from Levaquin (in 2010) in which my shoulders and neck had to compensate for the injury to my arm muscles/tendon.

    I really relate to this part as my diaphragm & phrenic nerve tested as weak on an EMG test and my breathing was consistently abnormal (with restrictive pattern) on spirometry and PFT tests (all prior to my treatment of IVIG and Rituximab).

    I can ask better questions once I actually read the link :D but from your understanding would it pertain to me with my (now life-long) neck pain and my prior diaphragm weakness (in spite of the fact that I have never had a sinus problem)?

    I am okay with the theory but in practice, if you did not have a doctor that was astutely trained in this technique, they could harm you or make you worse. I saw an osteopath a couple years ago who made my neck pain drastically worse and did not listen when I told him that he was hurting me. This is not to say that all osteopaths are bad but the two that I have seen in my life-time were bad and made me worse.
     
  16. Ema

    Ema Senior Member

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    It used to be that I could walk with the dogs, but was SOL if my shoe came untied in the process. Moving keeps blood where it belongs. It’s why people fidget to improve symptoms.

    But long story short, it has drastically improved, finally. I still attempt to avoid the maneuver but if I do it, most of the time, there’s no payback anymore.

    So hang in there. It took a long time. And it’s the first thing to start coming back when I overdo it. I suspect I will always have to be mindful.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    That is so interesting! I do not wear any shoes that tie (b/c I have used a wheelchair for 3+ years) and pretty much wear Tom's or Uggs. But if I did have a shoe that came untied and I was standing, I would have to sit in order to tie it and this is not something that I could work around (at least not yet). I can bend down to pick up something quickly and pay the price for it but to bend down long enough to tie a shoe, I wonder if I would actually faint (it has never happened but am just curious).

    I don't need to be moving or fidgeting like you described and I can stand in one spot for 20 min to wash dishes and was at an event back in Oct where I stood for about two hours total. Standing in one spot is now much easier for me than walking (no idea why)

    Do you know what improved it for you?

    Thanks and I think it will improve but suspect I will always have POTS and will always do work-arounds and ways to compensate (like I have to sit cross-legged and cannot have my feet dangling down in a chair).
     
  18. Wayne

    Wayne Senior Member

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    Hi @Gingergrrl,

    I'll try to get back to you soon on some of the questions you posed in your earlier post. For now, I was wondering if you've ever considered the reason you can't bend down could be due to a HEART BLOCK condition.

    I ran across this condition for the first time just now while watching a Lyme video, and had not heard of it before. It's apparently common in people with Lyme (me), and its symptoms can be very similar to Dysautonomia. It seems almost certain to me that I'm dealing with this, and wouldn't be surprised if it contributes to my inability to bend down or raise my arms above my head.​
     
  19. Ema

    Ema Senior Member

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    For me, I have trouble when I stand back up. I feel OK while my head is down, but then the blood can't get back up to my head or something if I stand up too quickly. It sounds like it is different for you?

    Not entirely, but my heart rate in general has improved. It used to average 125-135 at a moderate walk and now it rarely breaks 100.

    I would guess it's either the Hizentra, or ouabain. I wrote about the latter in a blog on HR.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Wayne, I read your link and from what I can tell, it does not pertain to me. It mentioned bradycardia in the link and I have never had bradycardia, only tachycardia. I once tried two meds together (a couple years ago) that brought my resting HR into the 50's but that only lasted briefly and it's never gone lower than into the 50's. I also think heart block would show on an EKG and it never has for me.

    This is a good question and in general when I have to pick something up from the floor, I do it as fast as I can to get it over with (if I cannot do it from a seated position or have another option). I assumed it was the bending down that was the problem but now am wondering if it is the getting back up part? I think it is probably the combination of both since it is two positional changes at once. I really am not sure now!

    I will read your blog if it lets me but am not a member of HR. I have had great improvements from Gamunex (similar to Hizentra for you) but there are aspects of having POTS which I am just not sure will ever go away. This week I was able to use a (lightweight) hairdryer to dry my hair for the first time in 3+ years which was thrilling. I remember in early 2016 (pre-treatment) having a caregiver help me w/shower and drying my hair for me and now I can jump into shower whenever I want and now I can dry my own hair with hairdryer again!!!

    I hope none of this sounds like I am complaining and I am thrilled for my progress. There are just still basic things that I cannot do but hope to in the future. Sometimes if I figure out the mechanism that is going haywire, I can improve it but sometimes not.
     
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