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Posts posted by Anamaria

  1. I also have Hashimotos and I’ve often wondered if that’s what is causing my POTS and other Dysautonomia symptoms. My General Doctor said that it isn’t effecting my levels as of yet but she is considering putting me on a low dose of thyroid meds to see if that will help. I have an appt in a few days to discuss that option. I hope your daughter starts feeling better soon. I can really relate though because my body is all out of whack and my levels are still fine. 

  2. Lol I cleaned my entire my house today and my left leg is numb I also feel like my pelvis is out of place, so with that my pinky toe and the one next to it goes numb and sometimes they feel cold. (They are currently leaning towards Ehlers Danlos type III as another diagnosis for me) Last time this happened, I talked to my Nuero and the PT that he sent me too, she figured out that my pelvis was rotated! I’d call your Neuro, maybe they can help? I hope you figure it out and feel better soon as I know from following other posts you’ve been feeling pretty good lately.

  3. 10 minutes ago, StayAtHomeMom said:

    My main and first symptom was not being able to get a deep breath. If I fight it I will hyperventilate and end up in the ER. It is always there with varying intensity. I have had a full work up by a pulmonologist and he said my lungs are fine. After a year I found I had POTS and my specialist just shrugs it off as a symptom. I wish I could make it go away. My O2 is 97 or up.

    The only thing I found that remotely helps was in the beginning it would get so bad and I was afraid I would end up in the ER again, I noticed I would have heartburn (the acid in the back of your throat feeling) so I would chew a rolaid with gas relief. The only thing I can figure is the magnesium in it would help. I haven't had to use that trick in almost 2 years now. Very thankful. I just meditate now when it bothers me. I am learning to live with it. 

    I have very bad acid reflux and I started thinking today that maybe that’s what makes you feel out of breath? I just started a new med for reflux today so time will tell if it helps me. I’ll keep you all updated. 

  4. 2 minutes ago, Clb75 said:

    I remember having shortness of breath really bad when I first got diagnosed, so much that I had a hard time talking at times. It felt like really shallow breaths, like I couldn’t get enough air on one breath. My doctor at the time said it was because there is a lack of blood flow to the upper parts of the body, including the lungs. In my case this has cleared up with Pots treatment even though a lot of other issues remain. 

    All of these replies make me feel a little more at peace.  I’ve been diagnosed with POTS for a few months now but this is a new symptom.  I also have mild asthma so it’s tricky to decipher which one is the cause.   

  5. 5 hours ago, Potsie1990 said:

    Yes. I had that for the first time a few weeks ago. It happened at night and was literally like my body forgot to breathe and I had to manually do it myself. I had a long day of standing on my feet and was around hair dye fumes but other than that, it was a normal pots day. I didn’t take anything for it and it eventually went away on its own, but it was alarming in the meantime and I had to do some serious mind control on myself to keep from getting anxious and making it worse. Do you have an O2 monitor? I kept mine to check my levels. It will let you know if there’s a serious problem and you should get help right away. 

    Yes I’ve been monitoring mine and so far it’s been normal. Hopefully it’ll go away soon. I’m encouraged since you said yours went away....did it last for a few days? 

  6. 2 minutes ago, Pistol said:

    I at times feel like I cannot take a "deep enough' breath - after getting a thorough check-up with CT, pulmonary function test and PO2 I was told it can be from dysautonomia. I am not sure of the mechanism behind it though. 

    I also get the feeling of not being able to take a deep breath as well. Almost like you’re just taking shallow breaths....

  7. Is this a thing with Dysautonomia? I’ve felt lately like I skip a breath (not even sure if that makes sense). Anyone else get this weird sensation or something similar? This is a new symptom for me not too worried as I went to my Asthma doctor and checked out fine but it kind of jars me a little when it happens. 

  8. 9 minutes ago, jklass44 said:

    I'm feeling awful due to the heat as well, been having lots of palpitations today. A fan and the AC is a good start. Cool cloths on your head and chest may help as well. Keep hydrated and keep moving around to a minimal if you can. Put on some music or maybe a show to help distract you... 

    If anyone else has helpful tips I'd love to hear them too, but that's pretty much what I've been doing!

    Im sorry your not doing well tonight! It’s like you think you’re doing okay and then BAM!!!! I drink at least four 33 oz bottles of water daily I’m not sure if that is enough? And I also add a can of V8 and I salt my meals. The dry mouth and “off” feeling tonight is almost unbearable. I know the doctors say this isn’t dangerous but it FEELS like it when you’re experiencing the symptoms. 

  9. Tonight my symptoms are terrible. I’m currently laying in bed with extreme dry mouth and that overall sense of impending doom that I’m sure you all know so well. My heart rate has been all over the place from the 50’s and up. Anyone have tips to just stay centered when they feel at their worst any tricks to keep your mind strong so you don’t freak out? I’m battling tonight and I absolutely HATE this feeling. 

  10. 53 minutes ago, Don said:

    Hi all.  I got my LINQ placed this morning.  The lidocaine injection was the worst part.  The actual placement was easy. I got a few stitches.  Overall, not too bad.  Now I want my cardiologist to see what I see.  When I described my events, the general consensus was that I was having what sounded like Brady/tachy syndrome. They also thought I was having short runs of SVT.  We’ll see in time.  Now I just want to catch it.  

    This is awesome Don! I’m going to ask on Wed. If I would be a good candidate for this. 

  11. 31 minutes ago, zerohours000 said:

    I get it all the time.  I also take magnesium.  But I find it also helps wuth digestion.  I get twitching in my quads, calves, face, ear, and arms.  Maybe my butt sometimes too.  De-stressing as much as possible helps.  Keeping active as best possible (like, for distraction purposes).  Getting enough sleep.  Remembering to take my meds.  And light exercise.  I’m not sure if they’ve stopped but you can definitely decrease their frequency.  

    I get them all in the same places! Hopefully the magnesium will help. I’m also going to start swimming at least twice a week so maybe that will help some too. It’s good to know I’m not the only one. 

  12. Amongst other annoying symptoms that I have I seem to have a lot of muscle twitching lately. I’ve started taking Magnesium and B12 complex to see if that helps but I was wondering does anyone else suffer muscle twitching? If so, anything that you’ve tried to get it to stop? 

  13. 10 hours ago, Don said:

    I think I mentioned in my other thread that my EP is putting in an internal LINQ monitor on Monday.  He didn’t trust my Apple Watch 100% and wanted more information.  He said the devices are good but still have their flaws.  

    I’m going to ask my EP zig this is an option for me as well. I met with the PA on Monday and she said if it happened again that they wanted to place another holter monitor....(I don’t want another one) it gives me terrible skin reaction and it always only shows the Brady and Tachy. The loop recorder is a great idea. 

  14. Congrats on your little guy! I’m no medical expert but I will say I have bouts of Bradycardia. It concerns me as well just because I’m so used to having a high heart rate. I even get episodes of my heart dropping and then speeding up all within a minute or so (those are not fun at all!) I guess if everything came back good in your workup it has to be something autonomic related. Hopefully you’ll get to feeling better soon. I know when I have my bouts of Brady I get super worked up too just because it isn’t my “norm”.

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