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I haven't had this symptom happen as much lately (had a while where it was happening every night, in the past) but had a really bad episode last night.

I was moving house over the past couple of days, and I ensured I didn't do any heavy lifting, because that makes my symptoms a lot worse. But I am still very exhausted, and the exertion must have contributed to it.

Basically, I woke up in the early hours of the morning, with this very strong surge feeling. Oddly, my heart wasn't racing like it usually does, but it was beating very strong against my chest.

The "surge" feeling was almost unbearable. Very uncomfortable. It only went away when I sat upright, which is odd, and I have noticed happen a few times. Lying down seems to make it worse, or I have to sit up to "reset" my body,  and then I can feel it slowly come down. It took just under 10 minutes for it to go away. 

I am guessing my BP was sky high, causing that feeling. 

Does anyone else have this? 

I'm finally see a specialist in ANS disorders in less than a month, so... hopefully some answers. 

Hope everyone is having a wonderful day. 

Is this quite common in Dysautonomia?

I notice my HR speed up a lot when swallowing drink or food, and it then slows down afterwards. I figured it has something to do with the vagus nerve. Can be quite uncomfortable. 

I'm so sorry you're having this happen @Pistol. 

I'm still trying to find something that works for my flares, as I have very similar readings to yours. My BP can be totally normal and on the low side, and then unexpectedly high at other times, making me feel very ill. Similar to yourself, and other folks above: I have found fluids usually help a lot, and make flares / episodes less frequent, but they don't stop them entirely, and sometimes not even close. 

Truly wish I had something useful to suggest, but until I see my specialist for the first time (still on a wait list to see a local ANS specialist), I'm afraid I feel rather useless. 

@jklass44 I have a similar issues with beta-blockers. Chest pains, and they don't control my symptoms anymore, for some reason. Lots of trial and error, I suppose. 

After another severe episode yesterday where I could barely walk, I've officially decided it's time to get a mobility aid for my "bad" (badder than usual) days, to use when I need to run errands but otherwise can't get around. 

For cost efficiency, I'm investigating getting a simple electric "commuter" scooter (as they are significantly more affordable), with a seat. Some can fold up easily, which is a bonus. But if anyone can recommend anything, or if you have any experience with using mobility aids, I am open ears. 

Many thanks.

Thank you all so much for your replies. 

Very appreciated! 

My b12 has been slightly low on occasion, but the past few times, it has come back OK. 

I will look at having a small amount of red meat a few times a week, and see if that improves! 

Hi there,

Today my doctor called me and said a recent blood test showed I was quite low on iron stores (ferritin, I believe?), but not yet anaemic, as my haemoglobin is currently still OK, albeit on the lower side of normal. 

I need to get an actual copy of the blood test results later this week, but I was just curious if anyone with dysautonomia has any experience with iron issues, and if they found it can contribute to their symptoms / make them worse. 

I've never really had issues with it until now. I don't eat red meat at all, so I'm thinking I will probably have to start having a little of that, as I was told that if I don't treat this now, I'll soon be anaemic, and that can't be good for my POTS symptoms, which are already almost too much to cope with. 

Thanks for any feedback. 

@Don We sound quite similar. I have been wondering lately how common erratic heartbeat is for folks with autonomic dysfunction. Mine bounces all over the place and the best way I can describe it, is my heart seems "confused". Fast... slow... super fast... super slow... repeat. All in the space of seconds. 

I second what @Pistol has said. I haven't had the device implanted myself, but I have heard only good things, and that the surgery is to implant it is minimal. It will likely be hugely beneficial for you and your future treatment. 

I keep having the same issue with a holter, in that it's only such a short period of time. I might go days with nothing, and then suddenly have a lot of episodes at once, when not wearing the monitor.  Sure is frustrating. 

Hi there, 

Indeed, I almost always have normal sinus rhythm when having an episode, but just very fast. I have, however, had a few incidents of SVT, captured on a heart monitor. Around 8 years ago, we tried to do an ablation but weren't able to do so, as they said they couldn't find the exact spot, so decided to leave it instead of risk a pacemaker (have heard a pacemaker is often not good for POTS patients?)

I've also been told I have inappropriate sinus tachycardia on occasion, but it's difficult, because my HR often is below 100. 

Basically, my heart is all over the place. The slightest of triggers sets it off. 

I was somewhat well controlled on Metoprolol for several years, but it stopped working, and also started affecting my blood sugar levels (a side effect I wasn't aware of). I have PVCs and PACs quite often, and they sometimes startle me, but I've just accepted them, now. 

As for the alcohol... oh how I miss it. 

@Pistol

Thank you so much for the kind words and advice! It really means a lot. I have to keep optimistic, even if things get scary, and am hopeful things will still improve. 

Hopefully I get that appointment soon with the specialist, and things start moving ahead. 

And very true about the driving. I have been thinking lately about how I just can't do it anymore, as I have had a fair few attacks whilst driving and have had to pull over. It's too dangerous! The last thing I want is to accidentally harm someone else whilst being behind the wheel, and having an episode. Henceforth, I need to get used to taking Uber rides instead.

Again - thanks so much. 

On 7/6/2018 at 11:31 AM, StayAtHomeMom said:

Any meds that would cause an adrenaline surge could be dangerous. Or I imagine if you take meds that up your blood pressure and they try to lower it. Being unconscious and if they have no medical record of you in their system they treat you "normal" and I don't think anyone on here would have a normal reaction to most things they would do if you were unconscious. 

@StayAtHomeMom Exactly, well said. This is precisely why I think it might be important to have the medical alert bracelet: to avoid potential medications that may cause an adrenal surge, unless, of course, it is absolutely needed (say in a case of anaphylaxis) and required an epi-pen or what not (hopefully that never happens!)

Thank you all so much for the feedback. It has been very helpful. I've decided on getting a silicone bracelet which has some brief information, and also prompts medical staff to see my wallet, where there is a card with more details.

I am thinking it will be best to write "Dysautonomia / POTS" on the actual bracelet, or perhaps "autonomic dysfunction"? Tricky knowing which terms are better, and more widely known, in the medical community. 

I know this is an odd question, but is it possible for me to ask my GP to trial Clonidine? Will that sound odd? 

I have tried beta blockers, and they made me worse. 

Have not tried an alpha/beta combination, however.

I keep hearing Clonidine is one of the first line medications for hyper-POTS, which I have, but have not yet been offered this drug. 

I hope things work out soon for you, @zerohours000. 

Of course, I'm not a Doctor, but I'd ask them about perhaps lowering meat intake in the meantime? Meat is high in B12, so if you eat a lot of it, it might be adding more to a system that has plenty. Again - I'm not sure why your b12 is high, but that's just a suggestion to look into. 

I know someone who had to cut back on meat after they found out their iron levels were too high. 

All the best.

@moosey Thanks so much for the reply. 

I'll hold out hope that things do get better. 

Unfortunately, I've been unwell for a long time and still no proper answers or line of treatment. I'm in my early thirties, but they still think I'm "too young for anything serious". 

I have had treatments in the past that worked for a short while (beta blockers, increasing salt and fluids), but that stopped working and now my POTS is presenting itself in new, and frustratingly terrifying ways. 

Anyhow, just wanted to say thank you, and hopefully I get to see the autonomic specialist soon. All other avenues have not worked. 

I'm feeling scared, and frustrated.

Just had another severe episode. It was triggered when I stood up too fast. My heart "set off", and pounded and raced so fast, and I had bad pains on my left side.  It hurt my chest so much. Then I had the shivering. It was a fairly short episode - perhaps lasting 15 minutes in total. But it was intense, and I'm just so exhausted, and tired of feeling afraid. 

My family and friends don't understand, and think I'm "just anxious" (anxiety on its own is hard enough to deal with). I'm on a waitlist to see the only autonomic specialist in the area (I can't travel interstate at the moment because I'm so unwell), and I am not sure what I'll do if I can't see them soon. Struggling so much. 

Cardiologist hasn't been able to help. The many doctors I've seen haven't been able to help. I am dismissed because I'm "young". 

I wish the people who patronise me could feel, just for a second, how scary an episode is, and then dare try and tell me I'm faking. 

Anyway - apologies for this post. I suppose I'm just looking for reassurance that things will be OK. Every time an episode happens, I feel re-traumatised. 

Coping with this is hard. 

Hi Anamaria, 

So sorry to hear you're experiencing this. It really is scary! 

I have this happen a lot, too. I will notice my HR being quite slow (I'd guess maybe 50bpm or less), and then suddenly it sky rockets and races, very fast, anywhere from 30 seconds, to hours. 

I am still not sure why this happens, but am trying to find out. My cardiologist keeps saying my heart is fine, so I am on a waitlist to see an autonomic specialist. But I think what happens is, because of the dysautonomia, sometimes when the HR goes low, the whole ANS goes into overdrive and over-compensates, if that makes sense? Our system likely notices a drop in BP, drop in HR, so assumes (because it is malfunctioning), that it needs to raise BP and raise HR, so tells the body to do this, and can release chemicals that cause that to happen.

It sure isn't fun. I hope you get some answers very soon! 
 

Just curious if anyone has any medical alert bracelets for their dysautonomia? 

I have a heart condition so am wanting to get one for that, but also would like to list some information about my hyperPOTS. I'm just not too sure what terms to use, as I know many medical professionals know very little about autonomic dysfunction, as it is. 

Any suggestions / feedback are most appreciated. 

Hi there,

I'm so sorry to hear you're having tinnitus. I have a problem with this myself, and it definitely coincides with my dysautonomia symptoms. 

Have you seen an ear nose and throat doctor? 

I get pulsatile tinnitus in my left ear (the wooshing sound in time with my heart beat) and am currently having that investigated further. I also have a near permanent ringing in my other ear, which differs in intensity from day to day. 

I'm not sure about the voices, but do they only happen when you're falling asleep? I sometimes hear things when I'm in a half-dream state. 

Hi there Nash,

Just wanted to let you know I relate so much. 

I have very similar issues to you, from the sounds of it. 

Showering can be so difficult when the heart is racing - so I often have a bath instead, just ensuring the water isn't too hot. If you don't have a bath, you should look into getting a shower chair. I find that being able to let your legs rest, just means the heart can slow down a little and doesn't have to work quite as hard. 

I'm so sorry that you've seen several specialists and haven't gotten anywhere. It's difficult having these scary symptoms, and not getting answers, but just know you're not alone, and our bodies are strong things. 

Is there a specialist in autonomic dysfunction anywhere in your region? I wish far more doctors knew about this condition. It would make our lives so much easier. 

Sending well wishes. I hope you get the help you deserve very soon! 

This is really interesting, as I've had some severe "surges" on planes. I know planes are usually pressurised to be below 7000 ft (as far as I'm aware, but they can be up to 8000 ft), however, personally, my body doesn't cope too well with dramatic change in altitude. I am assuming it's because the decrease in oxygen, however slight, then causes my ANS to go into overdrive, setting off an episode and speeding up heart rate and breathing in an attempt to rectify the problem. 

With all that said - I'm sure there are people who this doesn't happen to, so I don't mean to scare you at all. 

If you're fine on planes, I think you'll be fine at that altitude. 

Oh goodness... it is so good to know I'm not the only one (but I sincerely wish none of you had to go through this, either).

I get a lot of intermittent pain in my left under arm, and pain that comes and goes on the left side of my body in general. 

I've been told it's "normal" for the muscles on the left side to get sore when we have issues with racing heart, and so on. It's scary, but usually just stretching out the muscles, or a heat pack, soothes the issue. 

@jklass44 It definitely is funny and odd, isn't it! Sorry to hear you have it happen, though, too.  Also hope you're OK! 

I certainly agree that sometimes, it feels as though these events happen suddenly, so our bodies respond suddenly as a result.

I've had several occasions where sharp pain, out of nowhere, has made me faint. Once, I was standing in line to order a burger at a busy shop, and I had a sharp, deep stabbing pain in my hand for some reason - must have just been a severe muscle spasm or ache. I remember thinking "ouch", feeling dizzy for one second, and then waking up on the floor with people around me. It was funny, scary and embarrassing. 

Our bodies can be quite over the top, but from everything I have read, this reaction is largely genetic and all we can do is hope for the best. 

I'm wondering the same thing, Pistol, as soon I'm going to need an operation to fix my sinus problems. 

I haven't gone under general anaesthesia in about 7 or so years, but I wasn't in such a hyperadregenic state then (and I still didn't react well to it). 

Definitely agree that fluids will be hugely advantageous, as you said, and an anaesthetist who understands what you're going through! 

Wishing you the very best! 

Does anyone faint easily when it comes to triggers like pain, sight of blood, etc?

I've always been someone who faints suddenly after seeing something upsetting, or in response to sharp pain.

I've been told by my GP that this is a survival response from the body, and approximately 2 - 4% of the population experience vasovagal syncope. But I'm intrigued as to whether this is more common with folks with dysautonomia? 

Earlier today, I cut my finger as I was cleaning something, and suddenly had tunnel vision and passed out briefly. It wasn't even a severe cut, either, and it's so odd, because I don't have a phobia of blood really either. 

Anyhow, was just curious how common this was. 

Thanks folks, for the replies! 

@rgarton Mine last around 30 minutes, but up to 2 hours on occasion.

It really is so incredibly tiring, isn't it? 

So sorry that you experience 6 hours worth! 

I always need to sleep a lot afterwards. 

I get severe nausea sometimes, too. It can come in waves, and then suddenly go away. 

I think mine is partially caused by dietary intolerances (am trying my best to avoid such foods), but also a big part of it seems to be from the surges.