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@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. 

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. 

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  

@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  

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!  

@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! 

23 hours ago, JaneEyre9 said:

I think it's a noble thing to consider the child's health and future when deciding to try to have a baby. However, it's dangerous logic to make the leap that no one with dysautonomia should ever have children. With that line of thinking, we'd have to consider all genetic conditions that could be passed down to a child (breast cancer, alzheimer's, clotting disorders, heart disease, Down Syndrome etc.). Because no two parents have perfect DNA, there is always the chance that a child could inherit a condition that would significantly impact their life. It's a risk with every single pregnancy. I think genetic counseling is always a good option if someone is concerned about these issues in their family. Many people with dysautonomia or autoimmune diseases live full and happy lives (I am one of them) and would never have wanted their parents to not have them due to the risks we all run in existing in this broken world.

 

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 😊

Thanks so much @Pistol! 

Very helpful information.

My BP is definitely something I have worried about especially in relation to potential pregnancy. I know pregnancy can sometimes cause high BP, and I already have such severe surges sometimes, so it's something I really need to research and consider, but like you said — having a good ob can mean having that well taken care of. 

I'm 31 now, and ideally would like to have a baby around 33, or not much later than that if possible, so I am hopeful that my dysautonomia improves some and that things work out! 

I'm in my early 30s, and it's been upsetting me quite a bit lately that, due to my Dysautonomia, having a child may be something I'll never experience.

I'm concerned that if I fell pregnant, the baby would perhaps be affected / or also have autonomic dysfunction. I'm also concerned that I'd get far worse whilst pregnant, have higher risk of complications etc. 

I'll be sure to chat to my specialist about this when I see her next, but I'm wondering if any members on the forum have been pregnant whilst diagnosed with Dysautonomia, and what your experiences were? 

I've also been investigating whether it is feasible for me to have a surrogate, or adoption. Avenues such as that.

Like a lot of women, it's a dream of mine to one day be a mama. 

Many thanks for any replies! 

I have them fairly often, but nowhere near as much as @Alex D.! I'm glad you found a medication to help with that, Alex! 

I relate to finding them anxiety inducing @MissMermaid. Mine usually make me cough or take my breath away. I've had a few runs of VT in the past, too, but very short — about 7 or 8 PVCs or so in a row. Very uncomfortable and startling.

My cardiologist has told me the same as what you've been told — no cause for concern, even though they feel concerning. 

@DizzyPopcorn I love that. Thank you so much! 

Sending lots of well wishes to everyone! x

This sounds a bit bizarre, but, I've noticed my BP drops a lot when I raise my left arm.

I now use this tactic whenever I am having a "surge", with high BP, and my BP drops instantly (though I definitely look a bit silly having one arm raised!) 

I can't seem to see anything online talking about whether this is "normal" or not. I imagine it has to do with the blood from your arm rushing down and making it easier for your heart to pump... or something along those lines.

Anyway, I wondered if folks on here have had the same experience, or, if you're comfortable with checking if your BP does that too when you raise your arm.  I don't know if this is a common thing. 

Running a little experiment, I suppose! 

Very much so agree @Pistol @edriscoll. For some, there is a secondary cause, and I am so pleased for them when they can treat that!

But for a lot of us, Dysautonomia is a stand alone illness. It can exist on its own. 

I'm so happy for you @bombsh3ll! So wonderful that you found a cause.

Do you mind me asking how you were diagnosed officially? The tests etc? 

Also, very sorry if that was mentioned above and I missed it. Very brain foggy today.

@MissMermaid

Very sorry to hear you are dealing with that. 

I'm struggling a lot with nausea at the moment, too. I've had bad nausea that comes and goes for about a decade now, but over the past year or so, it's gotten a lot worse. I really struggle to eat, especially in the morning. 

I eliminated gluten which did help a fair bit, but I still seem to get days where I just feel so sick to the stomach. 

My tips (but by no means are these cures) would be having a soothing cup of tea, peppermint flavoured sweets, heat packs (I do find that helps settle my tummy a bit), trying to determine if you have any food allergies, and prescription meds if the nausea keeps going. 

It's frustrating that nausea is such a common symptom of Dysautonomia. I really hope you find something that helps! 

Lots of well wishes. 

I've been having problems with my lower wisdom teeth, especially the one on the left hand side.

They are coming in straight, and are through the gums. Over the years, I have had to do a couple of rounds of antibiotics for minor pericoronitis caused by them breaking through, but that's it.

Now, all of a sudden, they're hurting quite bad. Jaw aching etc. Pain. Headaches. 

Seeing the dentist on Tuesday, but just quite concerned about the prospect of getting them out. Any sort of surgery, however minor, always flares my hyperPOTS very badly. 

Hopefully it doesn't come to that and I can avoid removal, but just wondering if anyone has any experience with this? 

I didn't think there was an infection, but today I am feeling a bit feverish, so perhaps there is. Hard to tell because my POTs can also cause high temperatures at times. 

I really relate.

I'm very jumpy. Sometimes, if there's a loud noise, my heart will quite literally skip or thump the second I hear that loud noise. It just feels like my body is constantly on hyper-alert, which sounds somewhat similar to what you're going through. 

I also get really affected by sensory overload, and I've noticed that increasingly, too. If there's a car alarm going off on the street, or something similar, I'll have to put my hands over my ears and sometimes find myself curling up into a ball when there's too much going on. 

As mentioned above, I suspect it's just our bodies and brains not being able to cope with all the stressors and sensory input. It's a lot, on top of what we are already going through. So we feel the need to run, or hide, or curl up, as a coping mechanism. 

Really hope you're OK. Sending well wishes your way. 

On 9/9/2019 at 12:41 AM, KaciCrochets said:

Hi, I'm new here but not new to POTS. I'm hyperadrenergic but for the past few years my symptoms have been tolerable. However, the past three weeks have suddenly been brutal, for no reason I can ascertain. I've had norepinephrine surges all night for weeks, and after the first week I developed searing stomach pain to go with them. I've done the typical GERD protocol, and my new PCP put me on a low dose of hydroxyzine and that helps the burning go away, but does not stop the rushes. It keeps the rushes from becoming panic, but it's still tough to sleep. I had been doing well after starting the med a week ago, but yesterday I went from feeling fine to suddenly having stomach pain and nausea, and fighting panic. It was up and down the rest of the day, and nighttime was awful. I am having slow gut motility with it. It's hard not to let the anxiety spiral because five years ago I had a large kidney stone and that's when I became stuck in fight or flight. The ER gave me lorazepam, which I took for five weeks while I went through two surgeries, and then tapered off for three months, but I was stuck in hyperadrenergic h*** for two years before I healed enough to be able to sleep longer than four hours. So being back in this state for no apparent reason is terrifying. I'm 46 so I am wondering if hormones are becoming a factor. My doctor has referred me to neurology (I switched insurance so I can't see my dysautonomia specialist anymore), but given past experiences I am not very hopeful I will get help.  I guess I am just looking for reassurance that I am not alone in my struggles. Thanks for reading.

I'm so sorry you're going through this.

Similar to yourself, I had been coping OK for some years (it was still bad, but tolerable), and then, suddenly got a lot worse again — several months ago. Very similar symptoms to yourself. 

I wish I could offer some advice, but simply wanted to say we are here for you. 

Beta blockers also didn't work for me so hoping to find something very soon that actually does work, and I hope you also find something, too! 

P.S. Just noticed your username! I am just learning crochet at the moment and loving it. Feel free to PM me if you ever want to chat! 

Wow, I have problems in stores as well. Grocery stores especially. Isn't it interesting that we all do? 

For the first time last week, I used one of the complimentary electric mobility scooters at the mall. Booked it in, and was able to go shopping for two hours! I so enjoyed being able to just browse, and go all over the mall. The difference sitting down and zooming around on a scooter makes! I felt so free. 

I did crash when I got home, I suppose from all the mental stimulation and sheer excitement, as well as lifting / using my hands being still very draining, but the flare afterwards was nowhere even near what it would be had I been upright. The longest I can manage in a mall, standing, is mere minutes. So mobility aids sure are amazing. 

Thank you all so much for your replies. I'm seeing my specialist next week so I'm definitely going to discuss these low episodes with her. 

Wondering who else on the forum enjoys crochet, or other yarn work? 

I am a crochet beginner, and really enjoying it. Working on some basic patterns just to practice my stitches, but it's so much fun. A nice way to "switch off". 

Any tips, most welcome!

Also, I love that there are so many good tutorials on YouTube. 

@DizzyPopcorn No need to apologise. I totally understand why you're feeling angry. It's such a difficult place to be in and it takes a lot of adjusting. Things will get better though. I know that sounds rather corny, but it is true. There are many treatment options and there is lots of hope, so please hold on to that! 

@Pistol So very true! And thank you for the encouragement with the crochet! I am absolutely loving it and surprised that I can actually... do something! Having lots of fun and would love to crochet blankets for the homeless when I get a bit more confident with my stitches. Do you crochet? (I might start a separate thread in the Chit-Chat forum, so I don't overtake @lieze's thread!)

26 minutes ago, Pistol said:

@whoami - I did give up. When I became disabled nd realized that there is no cure I became very depressed and did not even want to live like that anymore. But I did not want to not be with my family so I sought help, talked to my doctor and my sister ( a therapist ) and got myself out of that slump. Today I am happy again and enjoy my changed life. I learned to not miss the things I lost but to be thankful for the things I have and can do.  We really can live with anything if we put our mind to it and have a support system around us. 

Such a good attitude to have, Pistol! So important to stay positive through all this.

I figure, there's no point being angry at what we cannot change. 

I've definitely had the anger, very much so, but it honestly just made me feel worse anyway. It's a poison. We have to focus on the wonderful things we can do, however small they are.

I've recently taken up crochet because it's something I can do whilst sitting or laying down, and that is bringing me joy, for example. Simple things too like sitting out in the garden, getting some sunshine, having a cup of tea, watching films / tv shows that I love. Cuddling my dog etc. 

We lost a lot from this illness. There's no denying that. But I think staying angry and always asking "why?", means we just lose even more. It means we miss living in the present. 

Over time we learn to cope better and better and as hard as it is, accepting where we are is the most useful. Radical acceptance, as they say. I've definitely found that helped me the most with my mental health, and how it all related.  It helped me see what I still did have in my life. 

Not all is lost. 

I'm so sorry to hear you had such a bad flare after going out and having such a nice day! 

Sending lots of well wishes! 

It's so difficult how we can appear totally "fine" to those around us, and then crash so hard, all of a sudden, and people just often don't get it. 

The last time I had to go to hospital — a few months back — I had been out that morning with a friend, having brunch. She commented on how "I appeared fine" earlier and she was so confused (but generally caring overall) about how I could turn for the worst so fast. It was the first time I had been out socially in many months. I could feel my body saying that I was over-exerting during that morning (we walked a very short distance and it was a struggle for me), and then, bam... severe hyperPOTS attack, in hospital, then on the couch for weeks. 

I so miss being able to just make plans and not worry about the severe flare that sadly always seems to come.

Really hope you feel better soon, Pistol. 

Also — I love the story behind your username  

@whoami I'm very sorry to hear you had that happen! 

My dysautonomia / hyperPOTS attacks feel really similar to a panic attack, and it can be hard to distinguish sometimes, because the release of adrenaline from hyperPOTS feels basically the same as a panic attack, however, I shake and shiver for quite a while afterwards — sometimes hours — with hyperPOTS attacks. 

As someone who has an anxiety disorder as well as dysautonomia, my heart goes out to you, because I know how hard it can be to be taken seriously.

I started to notice big differences between my hyperPOTS attacks, and panic attacks, and was able to extinguish which was which. For example, my hyperPOTS attacks always come after I have exerted myself (even in a small way), or when I am overly tired / in a flare. My BP bounces really low, then high, then back down again etc, and changes a lot with posture changes. Eating salt, as well as fluid loading, helps. 

I hope you're able to get some autonomic testing done. As mentioned above, perhaps do a test at home and monitor your BP, see how it changes with posture changes etc.

I wish you all the best! 

Bending definitely makes me feel worse. As does turning. 

I've noticed that when I am in a car, and the car turns, my head spins, often wildly, and I feel odd. Makes me feel unwell. 

It's actually made me interested in finding out if there's anything there linked with the baroreceptors (many of which are in the neck) — as I know that's a type of dysautonomia. 

Sometimes, when I bend or move my neck, it's like I can feel my neck muscles or carotid artery, sort of clenching or spasming. It's very hard to explain. But a very strange feeling, indeed.

I'm sorry to hear so many other people are also having this reaction when we move our necks! It's not pleasant at all.