I need help looking for a diagnose.

[Dumodal]

Hello there, I am a 29 years old male struggling a little bit with something I don't know yet, but hopefully you can help me out with this situation as I think I have a sort of dysautonomia problem.

 

A brief story, I was (sadly) a healthy young man, little bit overweight but a runner ( 2 marathon under my belt and 12 half marathon) so I was in an OK shape, April 2017 I was visiting my family in Portugal, we were in a grocery store when I started jogging towards my wife to do the check out together, I felt a Hugh thud in my chest that hurt and my heart was beating at probably 200+ ( Later on was found is SVT). I dealt with several episodes in my teenage years I just had to hold my breath and will go away, I went to sit but people around started to come and ask me if I was ok? I couldn't handle many people around me and I had a panic attack, I was freaking out and was shouting for an ambulance (something I never ever do) I lost control that moment, the ambulance came and in the middle of the way to the hospital my SVT stopped, I was admitted, blood test came back negative, X ray normal and just sinus tachycardia. I was in bed for 4 hours and then I was given the discharge letter, the moment I got up of bed I felt right away something was wrong, I felt heavy, out of breath, dizzy but I said well maybe is just because I was laying there for hours ( oh how I was wrong).

Things didn't get better unfortunately, after that I lost the ability to exercise, I tried but even a mild fast walk cause me severe palpitations heart rate 178, sweating, dizziness and malaise. Need to stop to catch my breath. I was was scared.

Several doctors and cardiologist came out, Echo normal, stress test normal but I struggle to reach my max, Holter monitor was normal few atrial ectopic and one isolated run of SVT, blood test normal, cholesterol normal, iron levels normal, thyroid normal, only think they found was mild non alcoholic fatty liver, which cause no symptoms.

I had an ablation to fix my SVT, was successful ( they found I had a PFO but cardiologist told me not to worry) and I thought my problems were over but nope still with the same symptoms.

I have: Palpitations/ skipped beats, dizziness, brain fog, sinking feeling like I'm going to pass out, shaky hands, my hands turn red when laying on my side more prominent in the left hand, chest pressure or tightness, headache, exercise intolerance, cold and sweaty feets, anxiety, tinnitus, blood pressure spikes goes very high laying can be 127/83 standing 166/105 same as heart rate laying 60 standing 120 if I walk can go to the 130, if I do something like going upstairs can reach 160!

I struggle to do daily stuff, I still work but I get unbelievable tired, I slept on the bus pass my stop several times, when I stand I feel my throat closing my heart beating fast and my body shaking.

I'm desperate, doctors dismiss me because they think I'm crazy or have depression because normal cardiac test were negative, they even tag me as hypochondriac. I know my body and I never was like this, this have overtaken my life and I'm desperate because I feel like I'm alone and no one in the medical feel is taking me serious.  I am almost begging for a TTT but they are thinking about it.

Anyone who can tell me if this can be related to dysautonomia because I'm running out of ideas and I'm desperate!!

Thank you very much.

[AnnHasPots]

Red hands could be a sign of Reynaud's disease which is artery spasms in the hand. 
You can get spasms in your heart and brain as well. Have the doctors verified your head is getting good blood flow (ultrasound, and transcranial doppler) and checked you for thoracic outlet syndrome, and variant angina (which can be difficult to diagnose). What exactly causes your symptoms? Keep a log and narrow it down. 

I have POTS because I have artery spasms. Definitely, rule it out. 

 

 

[Dumodal]

They ruled out Raynaud disease as my hands only get red not the typical white, red and purple change, No cranial Doppler but I will try to talk to my GP but they are kinda skeptical with me and to get a referral is going to be tough.

They are investigating Thoracic outlet syndrome but I was negative in the open hand close hand exercise they do with no significant oxygen level reduction.

My symptoms come everytime I exert myself or if I am in a stressful situation, standing too long can be a chore with the dizziness.

Sometimes I am symptomatic even at rest.

Some days I get good days and I actually go for a walk but then it's misery for several days.

Also I am extremely light sensitive, I'm really losing it.

[haugr]

I am sure that there are other explanations, but your symptoms sound very similar to mine and are pretty typical of someone who is hypovolemic, or what Julian Stewart refers to as "low flow" POTS. Finding the right balance of Losartan, clonidine, and sodium got me back on my feet again.  I posted my detailed learnings from my battle with it here http://hyperpots.blogspot.com

 

[bombsh3ll]

Where do you live? If you are in the UK, anywhere in England there is an NHS specialist autonomic centre in London that your GP can refer you to. It should be possible to get a TTT done at your local cardiology dept though. Perhaps take your GP a set of home readings lying to standing, along with the info on the POTS UK website - there is a section called POTS for medics. Unfortunately dysautonomia is not well known and you have to be very assertive and proactive. If you can afford, to speed things up you could pay to see a private cardiologist. I recently did, as I was diagnosed with POTS on the NHS but still left treating myself with salt and licorice root, and he is going to work with me trying medications after I complete blood volume and diabetes insipidus tests. 

[Dumodal]

2 hours ago, bombsh3ll said:

Where do you live? If you are in the UK, anywhere in England there is an NHS specialist autonomic centre in London that your GP can refer you to. It should be possible to get a TTT done at your local cardiology dept though. Perhaps take your GP a set of home readings lying to standing, along with the info on the POTS UK website - there is a section called POTS for medics. Unfortunately dysautonomia is not well known and you have to be very assertive and proactive. If you can afford, to speed things up you could pay to see a private cardiologist. I recently did, as I was diagnosed with POTS on the NHS but still left treating myself with salt and licorice root, and he is going to work with me trying medications after I complete blood volume and diabetes insipidus tests. 

I'm from the UK ( London), They wanted to send me to St. Mary's hospital but I don't know what happened and Nevers heard of the cardiologist, I tried to push my GP about it but he always says"let me see what can I do" but nothing gets done.

Yes I printed the GP info and I'm going to show it again to my GP, let's hope for the best but this is very debilitating.

Thank you!

[Dumodal]

2 hours ago, haugr said:

I am sure that there are other explanations, but your symptoms sound very similar to mine and are pretty typical of someone who is hypovolemic, or what Julian Stewart refers to as "low flow" POTS. Finding the right balance of Losartan, clonidine, and sodium got me back on my feet again.  I posted my detailed learnings from my battle with it here http://hyperpots.blogspot.com

 

Thank you for the info!

What it bother me the most is the tachycardia!

Like if I move around and in bed my heart starts going crazy, stretching is impossible without having a extra fast heart rate, any sudden movement can make my heart jump out of my chest.

Some days I wonder if it's gonna give up beating...

[bombsh3ll]

Being in London is a great start! I would ask for a referral to the automic unit at UCLH, or alternatively Dr Nick Gall, a cardiologist at King's College Hospital. Both of these are NHS. Keep pushing and see a different GP if you are getting nowhere. 

[AnnHasPots]

Have they ruled out Brugada or heart arrhythmias?

[Dumodal]

1 hour ago, AnnHasPots said:

Have they ruled out Brugada or heart arrhythmias?

I had an arrhythmia called SVT which was hopefully corrected through catheter ablation.

No signs of Brugada, no sudden death in family, but I do have have early CAD family history but as I said I had stress test and nothing showed.

I do have few PACs and occasionally PVC, and sinus arrhythmia but doctor told me is completely fine.

[Missy M]

It may help to record what your blood pressure is doing at these times of dizziness, to show your doctor(s) later.  My doctors have found that useful.  

[Jessica_]

On 1/1/2018 at 2:06 PM, Dumodal said:

Hello there, I am a 29 years old male struggling a little bit with something I don't know yet, but hopefully you can help me out with this situation as I think I have a sort of dysautonomia problem.

 

A brief story, I was (sadly) a healthy young man, little bit overweight but a runner ( 2 marathon under my belt and 12 half marathon) so I was in an OK shape, April 2017 I was visiting my family in Portugal, we were in a grocery store when I started jogging towards my wife to do the check out together, I felt a Hugh thud in my chest that hurt and my heart was beating at probably 200+ ( Later on was found is SVT). I dealt with several episodes in my teenage years I just had to hold my breath and will go away, I went to sit but people around started to come and ask me if I was ok? I couldn't handle many people around me and I had a panic attack, I was freaking out and was shouting for an ambulance (something I never ever do) I lost control that moment, the ambulance came and in the middle of the way to the hospital my SVT stopped, I was admitted, blood test came back negative, X ray normal and just sinus tachycardia. I was in bed for 4 hours and then I was given the discharge letter, the moment I got up of bed I felt right away something was wrong, I felt heavy, out of breath, dizzy but I said well maybe is just because I was laying there for hours ( oh how I was wrong).

Things didn't get better unfortunately, after that I lost the ability to exercise, I tried but even a mild fast walk cause me severe palpitations heart rate 178, sweating, dizziness and malaise. Need to stop to catch my breath. I was was scared.

Several doctors and cardiologist came out, Echo normal, stress test normal but I struggle to reach my max, Holter monitor was normal few atrial ectopic and one isolated run of SVT, blood test normal, cholesterol normal, iron levels normal, thyroid normal, only think they found was mild non alcoholic fatty liver, which cause no symptoms.

I had an ablation to fix my SVT, was successful ( they found I had a PFO but cardiologist told me not to worry) and I thought my problems were over but nope still with the same symptoms.

I have: Palpitations/ skipped beats, dizziness, brain fog, sinking feeling like I'm going to pass out, shaky hands, my hands turn red when laying on my side more prominent in the left hand, chest pressure or tightness, headache, exercise intolerance, cold and sweaty feets, anxiety, tinnitus, blood pressure spikes goes very high laying can be 127/83 standing 166/105 same as heart rate laying 60 standing 120 if I walk can go to the 130, if I do something like going upstairs can reach 160!

I struggle to do daily stuff, I still work but I get unbelievable tired, I slept on the bus pass my stop several times, when I stand I feel my throat closing my heart beating fast and my body shaking.

I'm desperate, doctors dismiss me because they think I'm crazy or have depression because normal cardiac test were negative, they even tag me as hypochondriac. I know my body and I never was like this, this have overtaken my life and I'm desperate because I feel like I'm alone and no one in the medical feel is taking me serious.  I am almost begging for a TTT but they are thinking about it.

Anyone who can tell me if this can be related to dysautonomia because I'm running out of ideas and I'm desperate!!

Thank you very much.

WOW! Your story is almost exactly like mine! You are the first person I have found in all my googling to have Dysautonomia induced by SVT. Like you I had runs of SVT since my early 20’s (I’m 30 now) and they would be fairly short and not cause symptoms and life would go on as normal when they were over. Until last January, I went into SVT but this time it was totally different, I almost fainted and was very sweaty and went into panic as well. Called 911 and by the time they got there SVT had run its course but my heart was still going 170 sinus tachycardia. They put me on beta blockers and sent me on my way. Since that day it’s like I’m in a whole different body! My HR is usually 120-130 in the morning and stairs make it go 150 ish. I also have attacks all the time of 170-180 (sinus) and nothing stops those except the beta blocker. My hands are always sweaty and my head pressure is constant and even causes my ears to pop. My anxiety is also thru the roof, but if anyone felt like this they would have anxiety too. Everyday is a struggle. I have been to doctor after doctor and still haven’t found the cause of my PoTs. I had a heart ablation too so at least hopefully the SVT is gone for good. Google has been my biggest help with this and drinking 2 liters a day and my beta blocker have helped a ton. I also had skipped beats that would stop me in my tracks and make me feel faint but after I started taking magnesium those are pretty much gone. I was also put on midodrine by my cardiologist and that helped tremendously with my morning light headedness. Now if my heart goes fast I don’t feel like a bag of bricks is being dropped on my head since starting the midodrine. All my tests have been normal except my iron, magnesium, potassium and vitamin D. I highly recommend you get all of those checked. Get into a neurologist ASAP or a doctor that knows about Dysautonomia! It took me almost a year to finally get into one and have a TTT and I’m still struggling for answers. I hope you are able to find some soon.  Just know your not alone!

[Peter Charlton]

With me, I had Ventricular Tachycardia that was cured by an ablation back in April. But what gave me all these A.N. symptoms were from the day they put me on Beta Blockers for my VT. I haven't been on Beta Blockers since March, but all my symptoms remain. Some like the variable heart rate and the breathlessness getting slightly better, whilst others like the brain fog and dizzyness, and the stomach seemingly turned itself off, getting worst.

I have spent months trying to get the NHS to listen to what I have to say instead of fobbing me off with non existent anxiety, now in the past three weeks I have both the hospitals who are looking after my heart, saying they will get my GP to arrange to see the Autonomic unit at UCLH. I just hope I can hang on to my job long enough, I wonder how long the waiting list is?

 

[Dumodal]

5 hours ago, Peter Charlton said:

With me, I had Ventricular Tachycardia that was cured by an ablation back in April. But what gave me all these A.N. symptoms were from the day they put me on Beta Blockers for my VT. I haven't been on Beta Blockers since March, but all my symptoms remain. Some like the variable heart rate and the breathlessness getting slightly better, whilst others like the brain fog and dizzyness, and the stomach seemingly turned itself off, getting worst.

I have spent months trying to get the NHS to listen to what I have to say instead of fobbing me off with non existent anxiety, now in the past three weeks I have both the hospitals who are looking after my heart, saying they will get my GP to arrange to see the Autonomic unit at UCLH. I just hope I can hang on to my job long enough, I wonder how long the waiting list is?

 

I'm pushing hard too, it's unbelievable how some doctors play you down. The same story with my SVT after 11 years of arrhythmia finally a doctor actually listened to me.

I understand you about the stomach problem, anything I eat even small meals makes my symptoms worse, bloated, short of breath, palpitations is just so hard to do anything!

It like someone turn off the switch in my body and now is not working.

[Dumodal]

On 03/01/2018 at 8:57 PM, Jessica_ said:

WOW! Your story is almost exactly like mine! You are the first person I have found in all my googling to have Dysautonomia induced by SVT. Like you I had runs of SVT since my early 20’s (I’m 30 now) and they would be fairly short and not cause symptoms and life would go on as normal when they were over. Until last January, I went into SVT but this time it was totally different, I almost fainted and was very sweaty and went into panic as well. Called 911 and by the time they got there SVT had run its course but my heart was still going 170 sinus tachycardia. They put me on beta blockers and sent me on my way. Since that day it’s like I’m in a whole different body! My HR is usually 120-130 in the morning and stairs make it go 150 ish. I also have attacks all the time of 170-180 (sinus) and nothing stops those except the beta blocker. My hands are always sweaty and my head pressure is constant and even causes my ears to pop. My anxiety is also thru the roof, but if anyone felt like this they would have anxiety too. Everyday is a struggle. I have been to doctor after doctor and still haven’t found the cause of my PoTs. I had a heart ablation too so at least hopefully the SVT is gone for good. Google has been my biggest help with this and drinking 2 liters a day and my beta blocker have helped a ton. I also had skipped beats that would stop me in my tracks and make me feel faint but after I started taking magnesium those are pretty much gone. I was also put on midodrine by my cardiologist and that helped tremendously with my morning light headedness. Now if my heart goes fast I don’t feel like a bag of bricks is being dropped on my head since starting the midodrine. All my tests have been normal except my iron, magnesium, potassium and vitamin D. I highly recommend you get all of those checked. Get into a neurologist ASAP or a doctor that knows about Dysautonomia! It took me almost a year to finally get into one and have a TTT and I’m still struggling for answers. I hope you are able to find some soon.  Just know your not alone!

Wow your case is almost a carbon copy of mine I'm 29, everyday like you said I feel I don't belong in this body, I dream to go back in time and be normal again, I used to run, go traveling, hiking, now I'm lucky if I survive during work.

I feel like a a ton of bricks in my chest, pressure, out of breath, cleaning the dishes put me in a shakiness and sweating, just horrible.

I'm taking Magnesium Citrate for the PACs, someday it works someday it doesn't.

I was able to push my GP for a TTT and he's hands on, I almost cried to him that I can't even go upstairs without feeling I'm going into cardiac arrest, I showed him a video of me laying down rest hear low 60 and standing 130 so he started taking me seriously.

It would be nice to talk to you and share information, it is hard to find people with SVT and now this!!

[nantynanniez]

Hello,

I was diagnosed by TTT many years ago, with orthostatic tachycardia/inappropriate sinus tachycardia, and, subsequently, with POTs and dysautonomia.  As with the others who have responded, we share much of the same story and many of the same symptoms.  I am writing to tell you that your PFO can also be a contributing factor with all of these symptoms.  I was just recently diagnosed with a right to left shunt/PFO and it has been causing me to be out of breath, difficult to exercise, and it's giving me hypoxia, which can cause many other related symptoms.  The doctors are now telling me that the PFO is likely what caused my POTS in the first place.  You need to know that the PFO puts you at higher risk for stroke.  Even though you are young, you need to insist on further investigation and closure of your PFO.  

 

[Sonya]

Have you gone to Mayo Clinic or Vanderbilt? I would if I were you.  Before my diagnosis I was diagnosed two different diagnosis’s, even conversion disorder which is our stating that it’s psychological. They were wrong.