Temporary paralysis I need your Insights

[Jenny TipsforME]

I've just talked to my sister about it and we've agreed I'll cope better emotionally if I feel more proactive rather than passively waiting while attempting to rest. There's a helpline at the hospital for potsies and you can speak to the arrhythmia nurse. She has direct contact with my cardiologist (it is difficult for me to contact him directly) and either of them may have seen this before re the midodrine. So I'm going to try this tomorrow.

Other avenues are phoning neurology admin staff to chivvy my EMG appointment along or contacting my GP who won't have the specialist knowledge but may have some power to move things forward. I won't have the spoons for all of this tomorrow.

The last few days I've consistently not been able to get downstairs though. If this actually works and they want to see me I'm not sure I can get anywhere and don't fancy having to deal with paramedics and a scary stair-chair thingy again - have any of you had that experience? It's like a bad theme park ride

 

[Gingergrrl]

- have any of you had that experience? It's like a bad theme park ride

Wow, I have never seen that "stair chair" thing before you posted the picture! Is that something available to purchase in the UK (or in the US and I just don't know about it)? I wonder how much it costs and hope the guy is strapped in and does not fall out ! I have seen chair lifts here that are attached to stairs but even those are pretty rare.

And good for you for being proactive and not waiting for the Neuro/EMG to move things along. We are thinking of you like @ahimsa said above.

 

[Jenny TipsforME]

@Gingergrrl paramedics have them to get patients down stairs. I don't think anyone else uses them. It's very hard to trust that you're not going to fall all the way down! We have very steep stairs (which incidentally normally I can either climb in a few seconds without hesitation or I just can't get up or down, though walking down them is more often a problem than up).

More as a note-to-self to remember to say: when I saw neurologist I mentioned I seem to get 2 types of weakness. For my normal, usually concrete legs coincides with feeling lightheaded as if not enough blood going to brain (which I think is it, it's a presyncope warning). If I don't sit or lie my body will make sure I do and I'll collapse. There's also a type that doesn't have these POTS/OH symptoms with it. I realised yesterday that what I'm having at the moment is like that. I don't feel faint with it, I just can't walk normally and shuffle or can't move. If I'm phoning the arrhythmia nurse about midodrine I should mention as she'd probably assume the lightheaded type of problem.

Quite likely ME mitochondria issue right now (as ME flare following bad reaction to midodrine or PEM) thinking about it, or possibly something else undiagnosed.

 

[Gingergrrl]

@Gingergrrl paramedics have them to get patients down stairs. I don't think anyone else uses them.

Thanks and that makes sense. Good luck w/your phone call to the cardio nurse.

 

[Jenny TipsforME]

@Gingergrrl thanks. I'm smiling to myself imagining them snapping to it and wanting me in straight away and me saying something like "oh no I just wanted to do something proactive as a locus of control thing. I don't want to actually see you if it involves the scary stair thing!"

Don't worry I won't actually say that, I'd grit my teeth and get there somehow.

 

[anciendaze]

@Jenny TipsforME

I'm getting the impression there are two distinct problems here. When you mentioned the episode in the shower where you felt faint after hot water hit your abdomen, that sounded like something that has bothered me for years, dysautonomia. I just live with it. I haven't tried to take hot showers standing up in about 10 years. I do take care to keep fluids and electrolytes balanced. I'm pretty sure I have episodes where I am hypovolemic. This does not normally affect my ability to navigate stairs, provided I can lie down for a while prior to using stairs. I would call this a work-around rather than a solution. I do not have any specific problem with my legs; I am more likely to experience weakness in my upper body. My orthostatic limitations typically show up as evidence of presyncope, like vision "graying out".

That leg muscle problem sounds like a neuromuscular disorder, and potentially one with long-term disability implications. Untangling these two is a difficult problem for professionals.

 

[Jenny TipsforME]

felt faint after hot water hit your abdomen,

Ah no the unusual thing was I DIDN'T feel faint during that shower (because I was taking midodrine). Usually I would so I was commenting on the difference. When the hot water hit my abdomen it led to a partial paralysis episode for a few hours, similar to in May but not as scarily severe. It wasn't like fainting.

It doesn't really matter in terms of the general point you're making, but I also want to leave an accurate account here in case other people experience similar.

In general during the couple of weeks I took midodrine my heavy legs without feeling faint have increased to the point it is currently consistent even though I stopped taking midodrine.

I agree that there's more than one thing going on though, well we know of at least two: I have verified POTS (so dysautonomia) and classic ME going on in the background to all this. I'm inclined to think something to do with adrenergic receptors is the problem (beta blockers improve it, midodrine alpha agonist makes it worse) but I'm not feeling confident about any one doctor having the knowledge to untangle the 3? aspects.

I don't think I'd actually like to be House' patient though!

I spoke to the arrhythmia nurse and they haven't come across other potsies with this reaction to midodrine.

 

[anciendaze]

@Jenny TipsforME,

Curiouser and curiouser. I'm concerned about return blood flow to the heart, and wondering if you felt unusual dyspnea as well. This should get the attention of a cardiologist, not that the problem is actually in the heart, though they may need to check papers by David Systrom's group to locate the cause.

 

[Jenny TipsforME]

@adreno [edit meant @anciendaze ] no I don't remember trouble breathing but the blood flow idea has some legs I think.

During the May paralysis my partner could see the pulse on the left side of my neck as if it was having to work hard (perhaps tricuspid regurgitation?).

The tingling on the right side of my face (which was in May episode and last week's episode) I've also had a while back when adjusting medication > temporary bradycardia (eg dipping briefly to 40bpm) but I was wearing a heart rate monitor for both these times though and my heart rate was ok both times lying down.

In the phase after the May episode my POTS was really bad but in this phase it isn't. When I stand to shuffle to the toilet at the moment I'm not getting any tachycardia alert buzzing from my monitor, and don't feel lightheaded (underneath medication my POTS is consistently bad but I'm taking bisoprolol and ivabradine). Quite possibly in May the hotter than usual shower triggered both a POTS flare and this paralysis issue as separate but coinciding problems. This time maybe the midodrine prevented a POTS flare but not my other problem, which it has even escalated.

Another speculation suggested in terms of weakness with midodrine is my excitatory molecules provoke a stronger reaction in the same receptor. That is, midodrine fills up / activates alpha-1 receptors, but my natural neurotransmitters have a *stronger effect*.

Hard to separate the neurology speculation from Cardiology speculation as it would be receptors related to blood flow/constriction involved.


During the night I was able to get to the bathroom more easily, so that's given me a bit of hope that this may pass.

 

[adreno]

I think you want to tag anciendaze, not me.

 

[Jenny TipsforME]

Yes sorry @anciendaze not @adreno ! Probably because I was thinking adrenergic...

 

[Jenny TipsforME]

@anciendaze checking back my fuller account https://tipsforme.wordpress.com/2016/05/27/paralysis-and-pace/ I do mention feeling like I can't breathe when they moved me to sitting position. This was quite clearly related to my throat though and I've heard a couple of potsies describe something similar. I didn't get the tight chest type of dyspnea (I get that if not on bisoprolol).

So many details to mention, not sure how to manage the next neurology appointment. Perhaps I'll have a piece of paper with extra details in my pocket and wait to see if the neurologist already has ideas from my tests. I realise I have emotional baggage about diagnosis because both ME and POTS were missed until I suggested them. I don't have experience of doctors analysing tests and symptoms and getting to a correct diagnosis apart from common, minor ailments!

 

[Valentijn]

I do mention feeling like I can't breathe when they moved me to sitting position. This was quite clearly related to my throat though and I've heard a couple of potsies describe something similar.

Our muscles often tense (or try to) to fight OI when we're upright too long. Perhaps muscles in the throat area are tensing when you sit up (along with everything else), and blocking your ability to breathe to some extent.

 

[Jenny TipsforME]

@Valentijn perhaps. This was a one off during the more severe paralysis episode. Other people moved me to sit up to put on a hospital gown. It came on instantly but I could speak to say. They lowered me to flat and it went instantly.

I sometimes get a similar thing in the night where I'm woken up feeling like my throat is constricting and I can't breathe and then it goes in about a minute. But that's lying down. I think we may have discussed this on a different thread sometime.

 

[anciendaze]

@Jenny TipsforME

Your symptoms suggest some kind of non-standard cardiac insufficiency, though probably not typical heart failure. Low atrial fill pressure sounds reasonable, but that is seldom measured. A careful measurement of cardiac output would likely show a low value, however there probably will not be any detectable damage to the heart itself, simply low performance while upright.

Frankly, with the medications you have been taking it is hard to decide what the primary problem might be. My rule of thumb is that medical doctors can usually deal with interactions of two drugs, but fail more often than not when three or more are involved.

As always, I am not a medical doctor, so it should surprise no one that I can't predict how you should be reacting to that combination of medications. Let me know if you encounter a professional who really does understand both the problem and the effects of previous treatments.

 

[TedBakerBoy]

Christ the scares the shit out of me!!!! Is this the same as standard sleep paralysis when you wake up and can't move but can see everything around you??? I get that occasionally but not as severe as the sounds!!!!

 

[Jenny TipsforME]

no @TedBakerBoy it doesn't feel the same as sleep paralysis. I had that mildly a few times early on in ME. I also feel quite unwell with whatever-it-is. It's not just being unable to move. I was terrified with the severe type in May, partly because I had no idea what would come next. I didn't know if I'd be stuck like that, or if it was something very critical. The recent problems have been more annoying and limit my independence. I do have some anxiety about whether this is progressive though. My lifestyle isn't setup for being supervised all the time. Last week I had relatives staying but today it is just me and the dog while my partner's at work.

 

[Jenny TipsforME]

Yesterday I got up and down stairs for the first time in about a month. Up until the previous day I could only manage one step but yesterday I could walk down and up them fine. In fact it amused my partner because I sort of rushed in case my ability to get up the stairs disappeared

This was a big relief because I was starting to think it might be permanent or that actual deconditioning would be setting in.

It wasn't a case of just generally doing better. In terms of general symptoms I'd actually been having a worse couple of days, lots of pain and ME like lymphatic type symptoms. Generally my POTS symptoms have been a lot better since my legs have been worse but yesterday I was feeling more potsie again.

The difference in terms of the stairs seemed to be wearing an unusual pair of support tights. These were different from POTS compression tights (which usually have tight compression at the ankle that gets less going up the leg). These are Spanx ones to make you look slimmer. The ankle has very little compression but they go right up to your arm pits and have strong support in the waist abdomen area. When I took them off I was back to shuffling around.

I've heard that there are POTS doctors who think blood pooling in the abdomen can be more of an issue than leg blood pooling.

I'm going to test this idea although I'm fairly sure this isn't the full story for me. When I saw the neurologist there were leg tests I couldn't do lying down so it isn't purely a postural POTS thing.

 

[anciendaze]

This isn't just about POTS or ME. There are other syndromes associated with the superior mesenteric artery (SMAS) or thoracic outlet (TOS), which cause poor blood flow to some parts of the body. These are aggravated by problems with orthostatic challenge or control of blood volume and/or electrolytes. Reduced cardiac output would also be a factor, but might not appear as classic heart failure.

In typical medical practice these are generally considered separate and unrelated. Diagnosis is a dichotomy. Patients are either seriously affected or right as rain. Diagnosis and treatment are aimed at the part of the body where there is most perceived evidence of malfunction. Only in extreme cases is there any attempt to correct the cause. There is a real lack of systems thinking in evidence. If your heart is working, and there are no easy signs of localized circulatory impairment, (like gangrene,) the problem must be mental. The "circulatory system" is mostly a medical figure of speech.

Query for readers: how would you distinguish this from Paolo Zamboni's CCSVI when there are diagnostic problems suggesting MS? How would it relate to the low cardiac fill pressures found by Systrom's group? Could dysautonomia be a factor in all of these? If so, which came first? There should be no question that episodic hypoperfusion and hypoxia can cause neurological damage. How much known neurological damage is the result of a series of episodes?

 

[Jenny TipsforME]

This isn't just about POTS or ME. T

It's more that I was imagining a reader thinking something to the effect "the daft cow got stuck upstairs for weeks because she didn't think to put on compression tights for a condition she already knew she had!" So I wanted to clarify that this doesn't fit neatly into a POTS explanation...

I have been up and down stairs again today without hesitation. Our stairs are a 50 degree angle, about as steep as they come. Today I wore Spanx style shorts which again cover abdomen.

We were looking into buying a stairlift. I want to hold off now to see if my current solution is sustainable. You can buy a lot of Spanx style underwear for the cost of a stairlift!