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About Scout

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    The simple things in life bring me the most happiness.

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  1. Indeed! My cardiologist said insomnia is a fairly common side effect of metoprolol, and many beta blockers in general. I think I just seemed to get the short straw so to speak and had severe insomnia whilst on it. I certainly wouldn't wish severe sleep deprivation on anyone. Not fun! And good to know! I'll go out in a couple of days once I recover from today, and will pick up some magnesium powder to try 😀
  2. @Jwarrior77 Thank you! I will definitely try some magnesium citrate. I used to take magnesium in a pill form (oxide I think), but haven't for a while. I've heard citrate is the best. Metoprolol caused profound insomnia (didn't sleep a wink for 3 days once), depression, and oddly enough — made my POTS worse after a while.
  3. I just got back from seeing my autonomic specialist, and I'm feeling quite deflated. I waited 6 months to see her, and she barely spent 5 minutes with me. The rest of the time, I was with her registrar, who was just taking notes and asking me questions, not giving any medical advice etc. She was lovely, but I have to admit she seemed pretty clueless. I explained how I have gotten quite a lot worse this year, with spikes in BP, and then it going quite low, and the specialist just said to try a beta blocker again — Inderal, this time. I used to be on Metoprolol but the side effects for me were very severe. She seemed to think Inderal might "be different" for me, and we will just start with a low dose. She was fairly against calcium channel blockers. It's all really frustrating me if I'm honest, because it feels like none of the doctors I see really know what's going on / how to best treat it, and they give me conflicting information. Just feeling a bit lost and upset, and scared of those severe side effects I had from beta blockers coming back. Sorry for the negative post. I hope everyone's having a lovely day.
  4. I have this happen regularly. It is an odd feeling! I have no answers I'm sorry, but just know you're not alone in experiencing it. It's been happening to me for about a decade, as well as sometimes seeing flashes of light in my eyes in time with my pulse, when my eyes are closed and I'm falling asleep.
  5. I'm sorry you also are allergic! The implanted loop recorder is looking more and more appealing, I must say.
  6. I did another 24 hour heart monitor yesterday, and seem to have had quite a bad reaction to the ECG / electrode stickers. I've had those stickers on many times before, and only ever had a mild irritation in the past. Nothing more than a very small amount of redness. But on this occasion, the skin is bright red, blistered, and very painful and itchy. Perhaps they used a different adhesive, or in the past, I've been given hypoallergenic stickers (I think they should be the norm!) If anyone has had this happen, what creams helped best? I'm using a sorbolene cream as that's all I really have at the moment, but wondering if something else may be better suited. Seeing my doctor early next week, so if I still have the rash, I'll get a prescription. Just after something to try and control it until then. Thank you!
  7. My BP goes up a lot in the shower, too. I feel your pain! Try sitting down in the shower if you can (and there's cheap shower chairs on eBay etc), and have the water temp not as hot. See if that helps!
  8. I regularly have spikes. The highest I have had was a hypertensive crisis — 180/120. It dropped low seconds later, very thankfully. But this indeed is something that is common with hyperPOTS and some other types of Dysautonomia. Have you done a 24 hour monitor? That might be a good idea too!
  9. @Jessica_ I had an attempted SVT ablation back in 2010, but sadly it was not successful. They said they found a suitable spot to ablate, but it was far too close to the SA node, and that it was a high risk for damaging it and therefore needing a pacemaker. I was only 22 at the time so they did not want to proceed with that. Hopeful that the next heart monitor I do at least captures something, so I can take that to the cardiologist and go from there. Really glad your ablation worked so well! @Pistol I think they do them for v-tach, but perhaps much less commonly. I seem to recall hearing that the ventricles are far more sensitive or something along those lines? Not 100% sure, but that rings a bell! Also — thanks so much for sharing your story about the loop recorder implantation. That puts my mind at ease if I get that done. I really appreciate your input as always! @MissMermaid So sorry to hear you also get them frequently. Indeed, sounds like a good idea to see the cardiologist just to be safe! Thanks so much for the well wishes. Sending them right back at you, too.
  10. I have hyperPOTS, and I must admit, I have not heard of anyone with it going into remission. That's certainly not to say that it's impossible. I'm sure there are people out there who have gone into remission. I just have not encountered them on any forums etc, but I do hope they're out there! On a positive, there seem to be quite a few people who find meds that work really well for them, and they can certainly have a drastically improved quality of life. HyperPOTS can be tricky to treat, sure, but it's absolutely possible to find the right med combo, and lifestyle changes etc, that do improve things a lot. Definitely keep that hope.
  11. So sorry to hear you experienced this. Definitely follow it up with your doctor and do all you can to capture it on monitor (I realise that's easier said than done, however). I have a lot of palpitations, irregular beats, PACS and PVCs, so I really relate! Similar to @Pistol, I simply have to avoid physical exertion as much as possible. I can get around my house slowly on a good day, but bad days, I really have to limit absolutely all physical movement. Running and whatnot, really causes a bad flare. So do go easy, especially until you have some answers. I don't have much else to add but simply wanted to send you lots of good vibes and well wishes
  12. @Pistol Thanks so much — I really should discuss a loop recorder! Is the implantation as intrusive as getting a pace maker? I know a pace maker implantation technically isn't considered a major surgery, but I didn't know if the loop recorder has wires that go into the heart or not? What was your experience like, and if you don't mind me asking, which arrhythmia do you have? I will be seeing my cardiologist as soon as possible, and will also do another holter monitor or two, just to see if it can manage to catch something! @Sushi Oh, that's very cool! I have heard of Kardia but thought it could only be used with apple products, and I have android. Seems it can work with quite a few android devices, however, so I will certainly look into it. I think the website says it can only detect a-fib at this stage, as well as tachy / bradycardia, but still seems worth looking into! Thank you so much for the tip
  13. Hi folks, Hope everyone is well! I had an episode of what I'm 99% sure was v-tach, tonight (ventricular tachycardia). I occasionally have non-sustained ventricular tachycardia, and it's a very distinct feeling when I do. I get PVCs regularly so know the feeling of that sudden thump, and then when I get v-tach, it's the same thump, but much faster, and several in a row — I think tonight was around eight beats of v-tach. It takes my breath away and makes me very dizzy. I'm going to speak to my cardiologist about it, definitely, but it is so frustrating how, whenever I wear a holter monitor, I don't have an episode. Does anyone on the forum have experience with ventricular arrythmias? It's making me a bit nervous, as I've had them a bit more frequently lately. Thanks so much for any replies. Happy weekend!
  14. @JaneEyre9 Thank you so much. I really appreciate you sharing your story! I'm very likely to message you and discuss further. I have a lot of questions 😊 @Hippopotsamus That's a very encouraging story. Thanks so much. I'm certain that, if I do end up having a child, it's going to be very hard for the first year or so. But I luckily do have a good support network, so would have quite a bit of help. I'm so happy to hear that things worked out really well for you and that you're enjoying parenting so much!
  15. Exactly. Thanks so much @JaneEyre9. Very well put. I think downright ruling out having children because there's a slight chance that the child could have dysautonomia, is not that dissimilar to eugenics. We never know what a child's health will be with complete certainty, and the child could have no health issues whatsoever, or may have a condition entirely unrelated. Life is arbitrary like that, isn't it. There's unfortunately always a gamble, in almost everything. The child's health is my foremost priority. That's why I'll chat to my specialist and research as much as possible. I'd never rush in to a decision this big. Thanks again for the positivity 😊
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