Losing Hope..

[kkirsten]

Hi,

So I am 20 years old and recently was diagnosed with Orthostatic Intolerance, not entirely sure of this myself as it was a good day when I had it done, now my heart will shoot up to 160s and not go down for ages; more associated with POTS. I was seeing a specialist, who has now basically told me that I need to go to meditation sessions/CBT in order to 'ignore' the skipped heart beats I get, and just to deal with it by drinking more water and having more salt (which doesn't seem to work very well).

I am experiencing symptoms I'm worried aren't dysautonomia related, I've had them for 7 months and was trying to tell myself it is just this orthostatic intolerance issue, but I am losing hope as I don't feel that it actually is.

I get a severe crushing/tight feeling literally exactly where my heart is (ontop of that area), a squeezing sensation, which at the same time I sometimes get left arm shooting pain or numbness.. My whole left pectoral muscle basically feels this pain and pressure. When this happens, my hands and feet go freezing cold and I tremble all over like it is freezing indoors or something. (this only lasts a few minutes and I will have it when I'm having a great time with friends and am completely relaxed, so I know it's not anxiety). On top of all of this, I get frequent PVCS which are hard to ignore, and sometimes I will get a row of them which is very frightening (around 10), I haven't spoken to someone yet with dysautonomia who gets them in a row like this, coinciding with chest pain..

With my OI, when I stand up from sitting down, I feel a head rush/heart rate change and like it all hits me suddenly when standing; I also sometimes will be lying down relaxed and get a feeling of an adrenaline/anxiety rush out of the blue, is this dysautonomia related/ hormones? Almost every time I feel this dramatic change when standing, or bending over, I get a PVC beat or two, which cause pain (each time I feel a heart beat doing this it basically hurts)

I have had a 24hr holter (didn't pick up a bad day at all, it was a good day with 1 skipped beat or so, no pain or tightness), echocardiogram (heart structurally normal) and an ecg. The cardiologists keep reassuring me its very unlikely something is wrong with my heart because of my age and tests, yet how can I feel all of this?

Can these symptoms just be OI/POTS, or should I keep pressing them to do a longer holter monitor / other cardiac/ hormone tests? 😪😪

[Pistol]

Hi @kkirsten - this sounds familiar to me. I have hyperadrenergic POTS and have the exact same symptoms - I know exactly how it feels! The cold hands and feet and trembling are - in my case - caused by extreme vasoconstriction due to excessive sympathetic overcompensation ( in other words: the ANS is overreacting ). There often is also yawning involved ( the body trying to recover more oxygen ). The PVC's are a sign of an irritable ANS and yes - they are painful and frightening!!!  The chest pain is - as I have been told by my local cardiologist - often caused by both the irregular heartmuscle contractions from frequent PVC's as well as change in circulation. This often also causes shortness of breath. --- It is typical to have normal echo and EKG with POTS - because there really is nothing wrong with the heart itself. It is the brain telling the heart what to do that is not working - and it is the part of the brain that is NOT controlled by your own will. --- In my case the symptoms you describe have greatly improved with meds - I take Carvelidol and Diltiazem as well as many other meds for POTS, but these two have had the greatest impact on the symptoms you describe. Please be hopeful - it is a long road but there is a lot of treatments out there, we just have to try them and listen to out bodies! --- Best wishes for healing - be strong and hopeful!!!!

[firewatcher]

I have had similar symptoms as well. Several times, while "in a POTS flare," due to changing meds, I have flushed hard in the face and had my hands and feet go white, ice-cold and numb with tachycardia and chest pain. At the same time, my pupils would dilate wide, I would get painful goosebumps and then I would start shaking. It wasn't pleasant and it was visually obvious to other people as well. I was switching between seizure meds for my migraines and it threw my ANS off.  I'm definitely not saying it is normal, but it can happen. 

[StayAtHomeMom]

It sounds similar to me. I would get another TTT and schedule to see a specialist or a doctor willing to learn. 

I did a poor man's tilt table every day for a month prior to my diagnosis because the first cardiologist I seen dismissed me without properly checking by TTT. 

I take a beta blocker that helps with my heart palpitations. I am not sure if PVCs are the same thing. I do occasionally get skipped beats but it happens way less on my Beta Blocker. My heart in general feels better and that in turn I think helps other things my body does. All my cardiac tests were normal so that helps too. 

[bombsh3ll]

Yes I have all the symptoms you describe as well. My diagnosis is POTS. Type undetermined but I also have EDS. Did you have a tilt table test or standing test when you were diagnosed? I personally think symptoms are more important than numbers & labels and if you can you should find a doctor who is willing to address your symptoms not just suggest very basic lifestyle advice that all of us are doing anyway long before we reach a clinic. 

Best wishes,

B x

[Scout]

I relate to this a lot.

Just the other night, I had a "run" of PVCs - perhaps six or seven in a row, which I think, technically, qualifies as non-sustained ventricular tachycardia. My cardiologist is not concerned, but wants me to keep a note of them, and to see him if it does increase. 

I also get the chest pain / tightness, and squeezing. It is the symptom I probably hate the most, because it can be very scary. 

Your symptoms definitely can be caused by dysautonomia, but do always run this by your doctor / specialist.

Dysautonomia can truly cause all sorts of weird, and sometimes scary, symptoms. 

I really hope you start to feel a bit better, and get the answers you need.

[statesof]

Hi @kkirsten I used to and from time to time get the 'crushing/ tight' feeling in my chest that you have mentioned. Because of it (and it could be episodic or last days/ weeks at a time) I did do a lot of the cardiac tests; month long holter monitor, stress test with echo, and echo bubble test. The only stuff they found on the was a PFO but nothing that would explain my symptoms so my doctor said its probably related in some way to my POTS.

That being said I am on verapamil now that keeps me from having the chest pain, and this I basically just asked my GP if I could try since I read somewhere else on the forum it helping someone else, and it has helped immensely for my chest pressure.