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FileTrekker

POTS leads to blood clots / heart attack / stroke?

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I just read on this forum elsewhere that;

Quote

 From what I can tell, those of us with dysautonomia, whatever the type, are at increased risk for vascular collapse and heart events as well as pulmonay (lung) events due to this collapse - that would include pulmonary embolism - so sorry you are having these problems

Is this correct? Does having POTS or whatever it is I have mean I'm going to get blood clots / PE / stroke / heart attack???

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2 hours ago, FileTrekker said:

I just read on this forum elsewhere that;

Is this correct? Does having POTS or whatever it is I have mean I'm going to get blood clots / PE / stroke / heart attack???

IDK about that. I think it depends on the underlying cause and whe someone says there is increased risk, how much is that? I would suggest getting a baseline with your cardiologist and vascular doctor. They can check your heart and vascular systems to know where you are at. If you have diabetes, then that complicates things and requires proper treatment. Also finding out the underlying cause is very important. 

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52 minutes ago, MomtoGiuliana said:

I am not sure where you read this, however, I have seen no studies that link POTS to these other conditions.

It was posted on here.

 

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24 minutes ago, JimL said:

IDK about that. I think it depends on the underlying cause and whe someone says there is increased risk, how much is that? I would suggest getting a baseline with your cardiologist and vascular doctor. They can check your heart and vascular systems to know where you are at. If you have diabetes, then that complicates things and requires proper treatment. Also finding out the underlying cause is very important. 

You've said this before but as I've said before the doctors say it's impossible, most people with POTS seem to never be able to find out the cause???

So this is anxiety provoking honestly because how am I supposed to deal with this when I can't find out the cause yet you're saying all these possible things that will kill me

P.S. I have no vascular doctor / have never heard of that?

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8 hours ago, FileTrekker said:

You've said this before but as I've said before the doctors say it's impossible, most people with POTS seem to never be able to find out the cause???

So this is anxiety provoking honestly because how am I supposed to deal with this when I can't find out the cause yet you're saying all these possible things that will kill me

P.S. I have no vascular doctor / have never heard of that?

I suppose there's a bucket for ideopathy, but if that's the case, it probably won't kill you. The ones that have unhappy ending are known and can be tested for. To put it another way, if there's no way of knowing, they wouldn't have a list of underlying causes on the website. Most of those things aren't necessarily fatal. Amyloidosis is, parkinsons, but not a lot more than that. You just need a good internist that's curious and wants to dig. If you can't find that, look up a doctor listed on this website that's near you. If they know POTS, they should know where to start. 

Dying doesn't bother me, we all have it coming as clint eastwood said, but I don't like not knowing too. I get it. I have had the run around getting passed around to different specialists like a 1%ers new girlfriend at a club meeting. Yes there are vascular specialists that deal with veins and arteries. Things like aneurisms, peripheral artery disease, deep vein thrombosi and other problems with the vascular system anywhere in the body. If you smoke and/or are diabetic, you run a higher risk of vascular issues. If you don't, that's good. 

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A lot of members on the forum post questions similar to yours.  It is normal to be scared when you are first diagnosed.  However, the people who are posting are just asking questions the same as you.  I wouldn't take that post (or any other post here) as proving a connection between POTS and other heart conditions or heart disease.   Dysautonomia is a disorder of the autonomic nervous system, not the heart.  Most of us in fact have a normal heart and that is one of the challenges with getting diagnosed.

Your personal  doctor can advise you best what your risks are.  I'm not a doctor, but have been on and off this forum for 15 years. I've seen many people ask this question or similar questions.   Generally POTS patients would not have increased heart-related risks unless they have another, separate heart condition or health issue.  

 

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I agree with what @yogini said - POTS in itself does not put you at and increased risk for blood clots and most people have anatomically healthy hearts. I have severe POTS with syncope and seizures due to vasoconstriction but my heart and blood vessels are healthy, no clots or plaques or increased risk of stroke or PE. So - despite the post that worries you there is no evidence of that to be true. 

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Thanks.

It's just frustrating because on the NHS they don't want to entertain diagnostic testing, they just go "you prolly have pots" and just throw beta blockers at me.

They wouldn't even do an echocardiogram. I had to pay for my own privately. It cost me a fortune.

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1 hour ago, FileTrekker said:

Thanks.

It's just frustrating because on the NHS they don't want to entertain diagnostic testing, they just go "you prolly have pots" and just throw beta blockers at me.

They wouldn't even do an echocardiogram. I had to pay for my own privately. It cost me a fortune.

Can you appeal doctors decisions not to do something? This is the scary part of single payer that proponents ignore. I have a friend in Canada that has to wait 6 months for knee surgery. It's nuts. Anyway, insurance companies in the US are becoming more like that. 

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There's something called the PALS (Patient Advice & Liason Service) who I can appeal to, but I've not had the strength to go through the miles of red tape. My GP has written to my cardiologist but my next appointment isn't until the end of May, asking him to consider further testing / care.

My only other option is private medical care. But even my GP said because my ECG is fine they normally wouldn't do an Echo and indeed I was told no. Hence why I did it private. The raft of other tests for the multitude of possible causes even if they did agree to them will take literally years at the rate it's going. I've been under my cardiologist at the hospital since September last year and in that time I've only seen him twice and an assistant doctor once, and every time it was a 5 or so minute appointment and all they did was give me beta blockers / shout at me for not taking beta blockers.

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Hi FileTrekker

Could you ask your GP for a referral to the autonomic unit at UCLH? I went there and although I knew way more about POTS and circulatory physiology than they did, it was still great not to be met with a completely glazed look. 

If you live in England you can go there with just a GP referral. 

I have used the NHS to systematically rule out Sjogren's, pheochromocytoma, and am waiting for the results of tests from UCLH namely ACHR-3 antibodies and supine/upright catecholamines. I have also had a cardiac echo on the NHS (as I was diagnosed with EDS, also someone thought I had a heart murmur). 

Unfortunately none of this has resulted in any treatment or symptom relief. 

I don't believe POTS alone is fatal, however I do believe that in those of us who are significantly affected it increases the risk of blood clots, heart disease and strokes due to immobility (just like people disabled with other illnesses like MS etc) and also due to episodes of high blood pressure which I get & think is part of the hyperadrenergic subtype although most with POTS do not seem to get this. 

The "treatment" of it also has potentially damaging consequences especially in the long term such as vascular damage from guzzling copious amounts of salt (which is ineffective, for me, & I have stopped doing), & drugs like florinef & midodrine which can cause high blood pressure etc. 

B xxx

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4 hours ago, FileTrekker said:

There's something called the PALS (Patient Advice & Liason Service) who I can appeal to, but I've not had the strength to go through the miles of red tape. My GP has written to my cardiologist but my next appointment isn't until the end of May, asking him to consider further testing / care.

My only other option is private medical care. But even my GP said because my ECG is fine they normally wouldn't do an Echo and indeed I was told no. Hence why I did it private. The raft of other tests for the multitude of possible causes even if they did agree to them will take literally years at the rate it's going. I've been under my cardiologist at the hospital since September last year and in that time I've only seen him twice and an assistant doctor once, and every time it was a 5 or so minute appointment and all they did was give me beta blockers / shout at me for not taking beta blockers.

Have you looked up Sanjay Gupta of York Cardiology? Maybe he's private. I don't know exactly how healthcare works in the UK, but if your on the government plan, does that mean you can only go to NHS doctors? So I guess there's private and public doctors. It sounds like if we had everyone on Medicare and if a doctor didn't take it, you'd have to pay or have private insurance. What I am starting to see in the US is conceirge or VIP practices. You pay the doctor a yearly fee and can come see him whenever you want. It's usually around $2000 a year for the fee. Testing is extra. They don't want to deal with the insurance hassels anymore. 

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Current literature still recommends increased salt intake unless hypertension is present and as directed by physician. All treatments are individual and what helps one may not be effective for another. If any one treatment is not working for ONE person it very well may help MANY others. The studies prove that. 

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On ‎3‎/‎14‎/‎2019 at 10:38 AM, FileTrekker said:

It was posted on here.

 

Reading their comment they seem to be giving their opinion that there is an increase in embolism due to having decreased activity (which is typical of anyone who is spending a lot of time inactive or even bedridden) or having a risk of clotting due to another condition.

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On 3/14/2019 at 4:20 PM, JimL said:

I suppose there's a bucket for ideopathy, but if that's the case, it probably won't kill you. The ones that have unhappy ending are known and can be tested for. To put it another way, if there's no way of knowing, they wouldn't have a list of underlying causes on the website. Most of those things aren't necessarily fatal. Amyloidosis is, parkinsons, but not a lot more than that. You just need a good internist that's curious and wants to dig. If you can't find that, look up a doctor listed on this website that's near you. If they know POTS, they should know where to start. 

Dying doesn't bother me, we all have it coming as clint eastwood said, but I don't like not knowing too. I get it. I have had the run around getting passed around to different specialists like a 1%ers new girlfriend at a club meeting. Yes there are vascular specialists that deal with veins and arteries. Things like aneurisms, peripheral artery disease, deep vein thrombosi and other problems with the vascular system anywhere in the body. If you smoke and/or are diabetic, you run a higher risk of vascular issues. If you don't, that's good. 

You mean I not get happy ending? You so cruel. J/K man. I think some of us with Autonomic issues also have other underlying disease processes that can contribute to heart issues and also blood clots. Diabetes is one of them. It can cause autonomic failure. Also, a lot of us had Hughes Syndrome which can cause blood clots. APS/Hughes Syndrome can also cause labile blood pressure and Pulmonary Hypertension. I have a moderately enlarged right ventricle, but mine probably stems from having large pulmonary emboli, and also from having un-treated moderate sleep apnea. I also have diabetes and other issues.  So, in my case, Autonomic issues are not the cause of my other problems, but more likely a symptom of them. My doc says he has seen people much older than me, who have had diabetes much worse than me for many years and not have any autonomic dysfunction. So he says it has to be something more systematic. I have had high BP readings when I was a child, and also when I was trying to get dental work done 10 years ago. I had very bad labile BP readings. A lot of times these were missed, even in the hospital, because my BP remains stable/normal when laying in the hospital bed. So, unless you have a gang of other underlying disease processes, you should be fine. Don't let any of this stuff scare you. I used to be scared to death about getting another blood clot in the lungs. I am no longer afraid of death. I only fear another DVT and more leg vein damage and chronic pain in my already damaged leg, or "lets not go there" a clot in my good leg and then having to use a cane. I haven't had an INR test for almost three months now and I am flying blind as to if my bloods are too thick or too thin. I'm still alive.  I have test strips coming next week for my home tester and I bet I will be right on the dot with an INR between 3.0 and 4.0.  Have full trust in my medications. Not your doctors, but in your meds. They do work and they do protect you. I hope you find out what's causing your Dysautonomia, but if you don't, I hope you find a good treatment plan what will alleviate all of your symptoms (this is to the original poster). 

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Regarding blood clotting, a lot of females with POTS/OI also use hormonal birth control to manage their cycles, which itself comes with (small) increased risks of clots and strokes. This won't apply to the males!

Wearing graded compression stockings or tights and doing leg exercises even if chair/bedbound, and keeping hydrated help to mitigate clot risk.

B x

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14 hours ago, JimL said:

Have you looked up Sanjay Gupta of York Cardiology? Maybe he's private. I don't know exactly how healthcare works in the UK, but if your on the government plan, does that mean you can only go to NHS doctors? So I guess there's private and public doctors. It sounds like if we had everyone on Medicare and if a doctor didn't take it, you'd have to pay or have private insurance. What I am starting to see in the US is conceirge or VIP practices. You pay the doctor a yearly fee and can come see him whenever you want. It's usually around $2000 a year for the fee. Testing is extra. They don't want to deal with the insurance hassels anymore. 

I am aware of him but I can't afford to see him privately.

I believe he does see patients on the NHS also at York but as I am in Greater Manchester he is not under my NHS trust.

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1 hour ago, FileTrekker said:

I believe he does see patients on the NHS also at York but as I am in Greater Manchester he is not under my NHS trust.

Isn't there something in England that allows patients to choose where they receive care?

I had a telephone consult with Dr Gupta for £70, he has a nice manner but knew far less about POTS than me and didn't follow through with what we agreed at the end (He was going to help me organise a transoesophageal echo and put me in touch with somebody else for a trial of ritalin). Obviously I wouldn't expect him to prescribe anything over the phone but he seemed hesitant about prescribing anything other than the basics in person either.

His video on desmopressin is interesting, I am glad to know that in theory he supports that although I think he lacks confidence in actually prescribing many of the treatments he talks about. Dr Gall in London was non-commital about desmo too despite promising evidence coming out of studies.

I currently have pretty decent supply, of which I have used very tiny doses on and off (For me it only helps me get an unbroken night's rest & wake up less dehydrated from polyuria, or say if I am going on a long journey with limited access to a toilet, but it didn't help me stand any). My endocrinologist explained that as it retains free water only, not sodium, most of this passes into cells so very little remains in the intravascular space. However a break from the polyuria (6L/day) is not to be sniffed at. 

The downsides are that if you take it in the daytime you have to restrict your fluid intake, and if used regularly, blood tests to monitor sodium are needed. 

I was on licorice root at the time though which I have recently come off, so cannot take desmo at the moment as I am mineralocorticoid deficient so prone to low sodium anyway but once things settle - either I need low dose fludrocortisone to stabilise my electrolytes or they remain within normal range unmedicated - I may give desmo another go. 

B x

 

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6 hours ago, blizzard2014 said:

You mean I not get happy ending? You so cruel. J/K man. I think some of us with Autonomic issues also have other underlying disease processes that can contribute to heart issues and also blood clots. Diabetes is one of them. It can cause autonomic failure. Also, a lot of us had Hughes Syndrome which can cause blood clots. APS/Hughes Syndrome can also cause labile blood pressure and Pulmonary Hypertension. I have a moderately enlarged right ventricle, but mine probably stems from having large pulmonary emboli, and also from having un-treated moderate sleep apnea. I also have diabetes and other issues.  So, in my case, Autonomic issues are not the cause of my other problems, but more likely a symptom of them. My doc says he has seen people much older than me, who have had diabetes much worse than me for many years and not have any autonomic dysfunction. So he says it has to be something more systematic. I have had high BP readings when I was a child, and also when I was trying to get dental work done 10 years ago. I had very bad labile BP readings. A lot of times these were missed, even in the hospital, because my BP remains stable/normal when laying in the hospital bed. So, unless you have a gang of other underlying disease processes, you should be fine. Don't let any of this stuff scare you. I used to be scared to death about getting another blood clot in the lungs. I am no longer afraid of death. I only fear another DVT and more leg vein damage and chronic pain in my already damaged leg, or "lets not go there" a clot in my good leg and then having to use a cane. I haven't had an INR test for almost three months now and I am flying blind as to if my bloods are too thick or too thin. I'm still alive.  I have test strips coming next week for my home tester and I bet I will be right on the dot with an INR between 3.0 and 4.0.  Have full trust in my medications. Not your doctors, but in your meds. They do work and they do protect you. I hope you find out what's causing your Dysautonomia, but if you don't, I hope you find a good treatment plan what will alleviate all of your symptoms (this is to the original poster). 

What I meant was, diseases like amyloidosis and parkinsons to name two. There are no good outcomes with them. I got DVTs in my right leg in 1993 from being bedridden with Mono. In 1999, they put an IVC filter in me so I could get off coumadin. Now I have to worry about the IVC filter. 

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3 hours ago, FileTrekker said:

I am aware of him but I can't afford to see him privately.

I believe he does see patients on the NHS also at York but as I am in Greater Manchester he is not under my NHS trust.

So you are limited to where you can go geographically? That sucks. 

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15 hours ago, JimL said:

What I meant was, diseases like amyloidosis and parkinsons to name two. There are no good outcomes with them. I got DVTs in my right leg in 1993 from being bedridden with Mono. In 1999, they put an IVC filter in me so I could get off coumadin. Now I have to worry about the IVC filter. 

I'm sorry about the IVC filter. Those things are only supposed to be used temporarily. Like if you are in a high risk situation and cannot be placed on blood thinners. I know what you ment when you said no happy ending lol. I was just trying to make a rough joke from the Asian massage and happy ending jokes. Yeah, some of the Autonomic Dysfunctions are bad, like pure Autonomic failure. I did some reading and was kind of freaked out. The Diabetes one really scares me because I had Diabetes for a while before diagnosis and that really damages the nerves all over the body. 

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On 3/15/2019 at 7:29 PM, bombsh3ll said:

Hi FileTrekker

Could you ask your GP for a referral to the autonomic unit at UCLH? I went there and although I knew way more about POTS and circulatory physiology than they did, it was still great not to be met with a completely glazed look. 

If you live in England you can go there with just a GP referral. 

I have used the NHS to systematically rule out Sjogren's, pheochromocytoma, and am waiting for the results of tests from UCLH namely ACHR-3 antibodies and supine/upright catecholamines. I have also had a cardiac echo on the NHS (as I was diagnosed with EDS, also someone thought I had a heart murmur). 

Unfortunately none of this has resulted in any treatment or symptom relief. 

I don't believe POTS alone is fatal, however I do believe that in those of us who are significantly affected it increases the risk of blood clots, heart disease and strokes due to immobility (just like people disabled with other illnesses like MS etc) and also due to episodes of high blood pressure which I get & think is part of the hyperadrenergic subtype although most with POTS do not seem to get this. 

The "treatment" of it also has potentially damaging consequences especially in the long term such as vascular damage from guzzling copious amounts of salt (which is ineffective, for me, & I have stopped doing), & drugs like florinef & midodrine which can cause high blood pressure etc. 

B xxx

It seems like a LONG way for me to travel in my current condition and it would cost me a lot to do so if they don't even know as much as you or I probably do. 😕

What would they likely be able to do?

Apparently the website for the Autonomic Unit there says they only accept referrals from specialists or GP's on the advice of specialists.

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20 hours ago, bombsh3ll said:

Isn't there something in England that allows patients to choose where they receive care?

I had a telephone consult with Dr Gupta for £70, he has a nice manner but knew far less about POTS than me and didn't follow through with what we agreed at the end (He was going to help me organise a transoesophageal echo and put me in touch with somebody else for a trial of ritalin). Obviously I wouldn't expect him to prescribe anything over the phone but he seemed hesitant about prescribing anything other than the basics in person either.

His video on desmopressin is interesting, I am glad to know that in theory he supports that although I think he lacks confidence in actually prescribing many of the treatments he talks about. Dr Gall in London was non-commital about desmo too despite promising evidence coming out of studies.

I currently have pretty decent supply, of which I have used very tiny doses on and off (For me it only helps me get an unbroken night's rest & wake up less dehydrated from polyuria, or say if I am going on a long journey with limited access to a toilet, but it didn't help me stand any). My endocrinologist explained that as it retains free water only, not sodium, most of this passes into cells so very little remains in the intravascular space. However a break from the polyuria (6L/day) is not to be sniffed at. 

The downsides are that if you take it in the daytime you have to restrict your fluid intake, and if used regularly, blood tests to monitor sodium are needed. 

I was on licorice root at the time though which I have recently come off, so cannot take desmo at the moment as I am mineralocorticoid deficient so prone to low sodium anyway but once things settle - either I need low dose fludrocortisone to stabilise my electrolytes or they remain within normal range unmedicated - I may give desmo another go.  

B x

 

It's disappointing to hear he does not seem to be as knowledgeable or reliable as it seemed. :(

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