Goschi

Andy, I know this mechanism of betablockers, and I was in fact not very happy when I had to start to take one in order to calm down my overshooting supine tachycardia... So, while I was not at all surprised that taking it didn't fix anything, I still can't understand why I don't feel in fact worse on the betablocker.... With or without it - I always feel the same...

It's surely always useful to find a reason to laugh at POTS - a succesful bubble bath is a very good reason indeed!! :-) Congrats you did it!! But besides that - Becia, you are not broken!! Noone who is active on this site, is! We all fight so hard and deep inside we all still do hope - for full recovery! I have already read so many of your posts - I can feel it in every single word you write - you didn't give up, you are fighting for the maximum! We all do.

Becia, what a good thing to personify POTS, I do this since I got sick! Though I never wrote a letter to my POTS (maybe I will do soon, thanks to your idea!), I very often do talk to my POTS. What I say, is quite similar to what you wrote in your letter. Maybe I am too "dramatic" in this context, but I actually declared war on my POTS right at the beginning. Up to now, I lost practically every important battle. But I keep reminding my POTS that the war will be won by the side that wins the last battle. And there's not the least doubt that this will be me!! (and in your case you!! ;-)) Of course I know this is all just a psychological "crutch", actually a very shallow one. But it helps emotionally, and that's what counts!

Bystolic has definitely reduced the amount my HR rises when I get upright. Since yesterday, I take midodrine, this seems to decrease to rise even more! I was just 15 minutes on my feet and the HR only increased from 68 to 83! But: I simply don't feel different!! When I am upright, I feel extremely potsy, as I do since 1,5 years... So strange....

Thanks for the fast replies!! Writerlymom, I am glad to be in hospital - it was planned, and I really like the way they approach my condition in a very serious, interdisciplinary way! F.e. I was told right at the beginning: Well, you have severe Pots, no doubt - we will of course try to treat this symptom (!!!! - thus the midodrine) - but to be honest, we don't care to much about your Pots, we will try very hard to find out, what's REALLY wrong with you and causes all your symptoms!! Wow... Never heard something like that from a doc since I fell ill 16 months ago...

Being in hospital since this morning, a new neurologists finally "dared" to try putting me on midodrine. Have already taken 2 doses (2,5 mg each) and wondering... What exactely is this med supposed to do? I actually don't feel anything, not even the adverse effects (no supine hypertension at all, no itchy scalp, no goosebumps, etc. etc.) Tomorrow morning my doc will ask me, if it "helped". Don't know, what to tell him. I don't feel different, when I am upright, my HR increases to the same amount as it always does, my legs turn beautifully mottled after 1-2 minutes being upright. So, my question goes to all folks who stated that midodrine has "helped" them - what exactely did it do for you...? Thanks in advance for any replies and best wishes to everyone from a warm summer evening in Vienna!!

Rama, so nice to hear that you do have times of feeling 100% recovered! Could you find out any causes for these times as well as for the times you get relapses? Wish you all the best for the future!!

Maybe I didn't read careful enough? I can't find any real "data" of prognosis in the article, just speaking about "some" and a "subset"... (?)

Res, I have been caught in exactely this kind of circle for the last 3-4 years! I could have written every word of your posting... Thus I am very much looking forward to answers from others!

In fact I was not sure, whether I had moons before I got Pots - I searched some old photos (~5 years, before I became ill) and I definitely had moons on all fingernails. And I too have prominent, vertical ridges on most of my nails - they all suddenly appeared about one year ago, shortly before I was diagnosed with pots. I am absolutely sure, it has nothing to do with ageing... Maybe something connected to (small fiber) neuropathy?

DeGenesis, thanks so much for this wonderful poem!!! Didn't know it, will read it again and again now, when I am feeling down!! Pragmatic acceptance does in fact help our psychology, you are right - but poems like this one even help a thousand times more, as they give what we need: Hope and neverending power!!

According to frequent measuring, my HR can both be constant or changing quite a lot, being in the same posture. However, in almost every occasion I quality for POTS with a rather fast increase of 30bpm or more from lying to standing. But recently I started to measure less often, as I understood (as so many here do!!) that my HR does actually not relate at all how I feel in general. Since 1 month I take Bystolic (betablocker) and my HR is generally lower than before, and even the rise when getting upright is less (before 50-60bpm, now "only" 30-35bpm). When I first realised that, I was very happy! Frustration kicked in when I understood that despite this "success", I can't do more physically in every day life. Thus, I am changing my "paradigm" right now and ask my docs not to concentrate on the HR at all, but to think about any measures that can give me more life quality - even, if the price would be a higher HR!

Just found this (old) thread - and checked my fingernails immediately. My moons have totally disappeared too, except on my thumbs. However, I don't have B12 deficiency, no thyroid issues, etc. A quick search on the net didn't help me either - anyone already has some knowledge about the fingernail moons..?

Yes, exactely!! The angles of the jaw start to ache, when this lasts for some time! I have asked all my docs, none of them had the least idea, what this can be...

No, not really - or at least I don't recognize it as "metallic". It only feels extremely "lemon sour". Would metallic mean something particular?

Definitely not my worst symptom, in fact it doesn't really bother me at all. I am just curious what it might be - whenever I am upright, (mostly already after a couple of minutes) I start to get a very sour feeling in my mouth, that seems to evolve from my mandibular joint or from my parotis. It is very similar to the feeling you would get when biting full force into juicy lemon slices. Anybody else gets this? Any ideas, what this can represent...? It has definitely a connection with posture, I never get it when I am supine.

Why do so many of us get tachycardia from simply rolling over in bed?? (happened to me too prior to my betablocker). There is no orthostatic aspect at all, no change in gravity, thus no blood pooling, etc. This particular phenomenon actually makes the whole medical definition of pots quite absurd!?

Headaches is something very strange for me - since I was a child, I always got headaches very easily (though not extreme ones). Since I got pots 3-4 years ago, I never had any of these typical headaches again. It must be connected to pots - but who knows how...?

When lying down it's 65-70, when I am sitting it sometimes (recently!) stays at this level or goes up to 75. After sitting longer than 30-40 minutes, it will start to steadily climb, at least up to 85. When standing, it will go up to 80/85, recently going back down (!) to 75/80 when I keep standing still without any movements for some minutes. When I start walking, or doing other tasks (washing dishes f.e.) it will steadily rise up to 115/120. The only way to bring it back down is going supine.

I definitely had (and sometimes still have) a particular kind of "panic attacks" which are very untypical for me, to say the least. And in fact I was diagnosed with hyper pots last summer. But meanwhile I could arrange getting a skin biopsy done (took me 4,5 months to "convince" my docs...) and - I do have small fiber neuropathy in my legs. As a consequence, my diagnosis was changed to "neuropathic pots". My frequent hyperadrenergic states are purely reactive. However, they can lead me into these awful attacks of "panic". Atm I am on a Betablocker (1,25 Bystolic) and on 4mg Diazepam as needed. Believe me, you can get the "panic surges" down with meds!! And - as a first step of relief - you won't even need a very specialised pots doc for these kinds of meds! You don't have to suffer!! All the best wishes!!

rgny, you are so right about the psychological aspects you are bringing up! Deep inside I know that I could drive. I have had Dysautonomia /POTS at least since 2009/2010. However, till I finally got my diagnosis last summer, I was always told that all my symptoms are only in my head. And thus, when I had another "potsy spell" while I was driving, I simply pushed through - if it is just in my head, it's not dangerous and no reason to be afraid, nothing can happen. Since I got my official pots diagnosis, I am much more careful - and stopped driving. Call me anxious, call me irrational. I simply don't dare to drive again at the moment...

Hi Andy and Erised, I do get exactely the symptoms you are talking about!! My first idea was also low oxygen saturation - however, it turned out to be always ok when this happens (at least 95%, mostly rather 97 or 98%!). Could it be that "only" our brains don't get enough oxygen? I measure with the fingerclip, maybe this is simply the wrong method...? Best wishes to both of you!!!

I can't drive since 16 months now... Makes me very sad at times, as I really lost so much with it (was driving on all 5 continents throughout my life). I tried a short drive about 4 months ago, but realised I had started to shiver even before I started the engine - no wonder, I had to walk to the car before that. This condition really *****!!!

I do have hip joint pain off and on - it's mostly in the morning right after I woke up and then goes away within the next 2-3 hours. I never found any connection to what I did the day before resp. what I do in the morning. It just comes "whenever it wants", so to speak. I will take a closer look if it can have something to do with what I eat...?

Juliet, that's interesting! I was on pyridostigmine only for 1 week, unfortunately I couldn't tolerate it. But when I took it, these symptoms were almost gone for me! It's always so strange, how different we all react...