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FileTrekker

Causes of sudden onset POTS

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So, I developed POTS almost instantly one day, infact I can pinpoint it to Sunday, 5th August 2018. My fitbit tracking my HR and vitals shows I was fine up to that, and this was the day all my symptoms started and I ended up in the hospital. I have been living a nightmare ever since.

I was wondering, as I was advised by JimL in another thread that I need to find out the cause of my POTS as it could potentially be fatal, but my doctors have told me that there's no point in looking as they almost never find out. Is there a way to narrow down causes based on weather the onset was so sudden? So I can eliminate certain potential causes? I feel like this would then give me a place to start with my GP as just diagnosing one of the many many causes can involve lots of testing and on the NHS just getting one test is months of waiting so it could take me years, assuming they'll entertain me at all.

I feel the more educated I can be the better.

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I can pinpoint when symptoms started that required a visit to an ER around Christmas, but in retrospect, I think there were symptoms before that seemed unrelated. Poorly treated H Pylori infection, diplopia, GI issues. For me all that started at the end of May and the only things I can think of for May is that I went to Florida a few weeks before, started running on a treadmill and ate cod that needed more cooking. The last was closest to the symptoms. Whatever the case, here I am. 

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Hi guys I am a POTS veteran at this point unfortunately. I have been in this forum since 2011 and my POTs started back in 2006. I had a lucky bit of a remission for 4-5 years until it came roaring back. Coincidentally my POTS also started on a treadmill. It started with breathing trouble. 

While there are many “triggers” with dysautonomia they rarely are the true cause. The true cause is 1000% worth finding because there is always a possibility that leads to a recovery. For example people with diabetes can get bad Orthostatic Hypotension, it is well documented. And Harvard did a study and found that if those people had tight control of their insulin for 1 years their Hypotension went away. So in some cases the Autonomic nerves go back to normal. I run large groups for several causes one of the largest by far is autoimmune. Virtually any autoimmune disease can cause any type of dysautonomia. I suspect about 15% of dysautomia people have a separate primary autoimmune condition, maybe more. And that about 30% of all dysautonomia people have autoimmune dysautonomia. The reason for 50% less is because about half of all people who have 1 autoimmune condition have 2 or more. Those number very well could be switched the other way. Autoimmune illness has those same triggers as most dysautonomia site like previous infections or surgery’s. Things like that. 

Virtually any illness or disease can cause Dysautonomia along with injuries, surgeries, chemical toxicities, ect... 

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Hi Filetrekker,

I know not just the date but the exact time I developed POTS, it was approx 5pm Monday 4th August 2014. Although I continue breathing, that was the day my life ended. I was completely healthy up until then. My dad came home with a balloon, and my two children both wanted it. I went to the drawer to get another one quick, & tried to blow up what I thought was a balloon but was actually a water bomb. It was really stiff, & I blew SO HARD. 

I passed out, & lay on the kitchen floor waiting for the blood flow to return to my brain & feel normal again. It never did. 

That doesn't sound autoimmune to me. 

The only possible "causes" I was diagnosed with after several investigations, many private, are hypermobile EDS (although I am not nor have ever been hypermobile, nor do I believe EDS explains orthostatic intolerance at least in in my case as one is lifelong, the other instant & triggered by a single event), and also cranial settling (a form of craniocervical instability) on upright MRI imaging, although even this is not clear cut with another surgeon saying my scans are fine. I do not see any plausible way a forceful valsalva could have caused that. I am also markedly renin and aldosterone deficient.  

Here is what I have tested negative for so far:

CSF leak

Anaemia/iron deficiency

Diabetes mellitus

Sjogren's syndrome (lip biopsy)

Autoimmune markers (CRP, ESR, ANA, Rheumatoid)

AChR antibodies

Coeliac disease

Hypercalcaemia

Diabetes insipidus 

Addison's disease

Pituitary failure

Thyroid disease

Chiari malformation.

Pheochromocytoma. 

Arrhythmia

Papilloedema/optic nerve abnormalities.

Structural heart problems (echo x2)

MRI brain

MR Angiogram head and neck vessels.

 

Tests I have yet to have:

Pelvic vein assessment to exclude pelvic vein congestion syndrome (females only).

CT venogram head and neck (to exclude venous outflow obstruction - conceivably the forceful back pressure could have caused venous damage eg valve incompetence collapse stenosis thrombosis etc) If blood cannot flow out of the head, fresh blood cannot flow in properly. 

Intracranial pressure measurement - by lumbar puncture or ICP bolt. 

Polysomnogram - to exclude upper airway resistance syndrome (UARS)

Invasive cervical traction - re cranial settling, to help gain idea of whether or not I would benefit from craniocervical fusion.

 

Obviously not all of these will be relevant to every individual with dysautonomia, and some people with other symptoms such as rashes, itching, flushing, swelling, joint pains, numbness, weakness, vertigo etc may require different specialist testing that doesn't apply to me, but the above list might help give some ideas where to go next.

B xxx

 

 

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My onset was sudden but in retrospect I had symptoms all of my life, just compensated for them. did pass out as teenager quite a bit. In my case it is hyperPOTS and most likely something genetic since my sisters, mother and several nieces all have it.  

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Not sure how mine started. I did notice Last Summer I would be working out on the yard, and moving bricks around, and all of a sudden I would have to sit down because I felt dizzy like I was going to pass out. Some days I could ride the bicycle eight or nine miles and was fine, and on some days I would wash a load of clothes and after folding them I was out of breath and couldn't breathe. I never paid attention to it. Then around Thanksgiving I started getting dizzy and lightheaded, felt very strange. Felt like panic attacks and went to the ER, was diagnosed with pots. Then I lost a lot of weight for no reason had gastric issues, and they found a growth on my bladder. I thought it was cancer oh, they removed it and said it's not cancer. So now I have to find out exactly what I have. Is it only pots, or is it more? I did go through all my records oh, and found out my white blood count was at 11 for 2 years. Like my body was trying to fight something off. That can cause pots to from what I understand. An undiagnosed condition. I blamed it on the growth on the bladder, they say I had severe diverticulitis for a while, so now I still don't know what I have. I have to start getting tested for autoimmune disease now. Something cause my body to go Haywire.

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Mine came on suddenly too.  September 24th 2014 at 6:30pm I knew something was seriously wrong but not what.  I caught a stomach virus while recovering from a cold and that tipped everything over.  I have hyper POTS.  In retrospect, like others, I suffered some symptoms for several years but nothing my Drs picked up on because blood work all came back normal. I thought it was autoimmune and had been tested several times since my early twenties but it never showed up.  Post viral onset of autoimmune disease is classic and my family is rife with those.  Eventually the ANA came up positive 18 months after full blown dys and I started treatment for UCTD.  My neurologist now has me on SCIG after the Celltrend blood work also showed an antibody present.  I knew it was autoimmune and the first specialist I saw when I became ill was a rheumatologist but the blood work was negative so he wouldn’t treat me.  Keep being tested and searching for the answer.  It may not be soon, it took me 30 years, but I believe that more and more research is being done and getting closer to the why for some of us.

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6 hours ago, dannyg said:

Felt like panic attacks and went to the ER, was diagnosed with pots.

@dannyg - did you ever see an autonomic specialist? 

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I was diagnosed at 59 and have had a wonderful lifetime of diseases, virus, accidents, concussions, even got bit by a brown recluse spider, etc etc. My doctors and I made the decision together to not look for cause but to concentrate on reducing the symptoms and their effect on my life.

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On 7/8/2019 at 1:30 PM, Pistol said:

@dannyg - did you ever see an autonomic specialist? 

Sorry for the delay in replying. No, not yet. Im still trying to sort out other medical issues as to what might have caused my POTS. My ALT in my liver enzymes have been a little bit High. Not much like six points over limit. But my kidney protein has been at 30 for the last 5 months. I seen a nephrologist, he said he wasn't too worried about my protein being at 30 because I had that growth on my bladder causing problems. I'm going back to my GI doctor this week then to a new PCP. I want my liver checked, and my new primary care doctor to run complete blood work and see if anything else is going on. If all my tests come back normal, then I'll see the autoimmune specialist.

Way back in December when I started with all of this unbalanced dizziness and lightheadedness, right before I was diagnosed with pots, they thought I had vertigo and sent me to a therapist. I will never forget what she told me. The second day I was doing testing, she told me she can't test me anymore, because she can't help me improve. She told me right out, " you have a medical condition that caused this, you need to find out what it is". 8 months later I'm still looking. It's down to my liver or my kidneys. I eliminate all these possibilities that I will find an autoimmune specialist.

Also I recently found out oh, that I have a level 2 reflux. Which means urine backs up into my left kidney. That could cause chronic UTIs. For two years, I would get a tenderness once in awhile in my lower left side. My doctor will just give me antibiotics and tell me it's a UTI. Am I white blood cell count would be at 12 or 13. But I never ran a temperature or was sick. I asked my nephrologist and urologist about that reflux because it can cause chronic kidney problems and kidney failure. They told me not to worry about it oh, I probably had it all my life. I'm not too sure about that. But I'm going to need man some testing in these next two weeks to get everything eliminated and looked into.

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9 hours ago, dannyg said:

f all my tests come back normal, then I'll see the autoimmune specialist.

@dannyg - I actually was asking if you ever saw an AUTONOMIC specialist and if so - how did they diagnose your POTS? 

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1 hour ago, Pistol said:

@dannyg - I actually was asking if you ever saw an AUTONOMIC specialist and if so - how did they diagnose your POTS? 

In December I went to the ER after I found out my BP Drops and HR went to 140 when I stood up at home. They admitted me for 3 days and were going to do a TTT but the straps were broken and they never got it fixed. A Neurologist came to see me, had me stand up by the bed, checked my BP and Pulse standijg up and sitting down, and said "You have something called POTS," That was it. Went to an Endocronologist after I got out my old PCP sent to see me that did the same thing checking my standing and sitting BP and Pulse, he diagnosex me with  ,"POTS, Dysautonomia, Neuropathy,". All Im ever told by 3 Cardiologists and all other doctors is "wear compression socks and eat more salt,". Thats it. My BP is 140/95 sitting most of the time, and when I stand its 92/65. So they cant give me anything to control my BP because I have to much of a swing in numhers. They tried giving me florenef before, ended up in ER, went way to high, they cant give me anyyhing to lower it cause its to low when I stand. 

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2 hours ago, dannyg said:

In December I went to the ER after I found out my BP Drops and HR went to 140 when I stood up at home. They admitted me for 3 days and were going to do a TTT but the straps were broken and they never got it fixed. A Neurologist came to see me, had me stand up by the bed, checked my BP and Pulse standijg up and sitting down, and said "You have something called POTS," That was it. Went to an Endocronologist after I got out my old PCP sent to see me that did the same thing checking my standing and sitting BP and Pulse, he diagnosex me with  ,"POTS, Dysautonomia, Neuropathy,". All Im ever told by 3 Cardiologists and all other doctors is "wear compression socks and eat more salt,". Thats it. My BP is 140/95 sitting most of the time, and when I stand its 92/65. So they cant give me anything to control my BP because I have to much of a swing in numhers. They tried giving me florenef before, ended up in ER, went way to high, they cant give me anyyhing to lower it cause its to low when I stand. 

I also have untreated POTS (I have been able to access them all but am medication refractory) & know how miserable it is. I am the other way round from you in that BP is low sitting & goes up standing.

If all you have tried though is florinef, there are still numerous options out there for you to try. 

it would definitely be worth seeing an autonomic specialist, as if salt & compression socks cut it, nobody would be on forums like this.

B xxx

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1 hour ago, bombsh3ll said:

I also have untreated POTS (I have been able to access them all but am medication refractory) & know how miserable it is. I am the other way round from you in that BP is low sitting & goes up standing.

If all you have tried though is florinef, there are still numerous options out there for you to try. 

it would definitely be worth seeing an autonomic specialist, as if salt & compression socks cut it, nobody would be on forums like this.

B xxx

I eventually will. Soon as I get kidneys, ballbladder, and liver tests. If thats not a peoblem, then to an Autoimmune Specialist. I'm in an autoimmune Facebook group, where a lot of people that symptoms like I have, liver and kidney numbers like I have come to find out that's what caused their pots and autoimmune problem. It was unknown and undiagnosed for years. I want to get to the root cause if I can.

Whatever is going on is causing it to get worse. I've been getting up in the morning and getting real bad. My blood pressure this morning was 72 over 60

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@dannyg - I agree with @bombsh3ll. It sounds like you only ever tried the one medication. an autonomic specialist could help you control your POTS symptoms. 

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13 hours ago, Pistol said:

@dannyg - I agree with @bombsh3ll. It sounds like you only ever tried the one medication. an autonomic specialist could help you control your POTS symptoms. 

I will vvery soon. I'm going to eliminate any medical possibility in the next few weeks then look into that for sure. My numbers for blood sugar, liver ALT/ AST numbers are up, and Kidney numbers are up. I been reading in the Chronic Kidney Disease facebook group and the Liver group and they have a lot of the same symptoms I have. Changes in blood pressure, fatigue, heart racing, circulatory problems, weight loss and muscle loss for no reason. But then some of them on reading have an autoimmune disease that caused there kidney problems and liver problems. But I will be going to see an autoimmune specialist if my numbers come back they had with these tests coming up in the next week and a half two weeks. Either way I will go

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3 hours ago, dannyg said:

But I will be going to see an autoimmune specialist if my numbers come back they had with these tests coming up in the next week and a half two weeks.

Again - for your POTS related symptoms I would suggest an AUTONOMIC specialist, not an autoimmune specialist. Be well!

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19 hours ago, Pistol said:

Again - for your POTS related symptoms I would suggest an AUTONOMIC specialist, not an autoimmune specialist. Be well!

I fully understand what your saying. But I have to get to the "root cause".  I dont want to waste time treating symptoms. 

Yesterday I went to a new GI doctor. He looked at all of my records. He said he thinks he knows what it is. He sent me for a full liver panel. Hepatitis, ANA, and 6 other tests.  Depending on the results even if they're inconclusive, I may need a biopsy on my liver. He asked me who diagnosed me with pots. And I told him all my symptoms and what's going on. He knew about pots and dysautonomia. I have felt for a long time, and he feels it's not an autonomic system problem. It is way more than pots. It is an autoimmune problem. Something is attacking my system. The white blood count being slightly over the limit for two years, is an immune problem, my body is trying to fight something off. When your body constantly tries to fight something off it can cause your whole system to go Haywire. My ALT in my blood, the Protein in my Urine, have been up for a long time. Something is causing my kidneys to be bad, and it could be coming from the liver. He is testing me for autoimmune hepatitis, and Primary Bilary Colagitus. Back in December that therapist when she was testing me she told me she cannot help me because it's a medical problem going on. The protein in my urine, the alt being up indicating a liver problem, I'm urinating out all my calcium, my body is not absorbing food, my loss of weight and muscle mass for no reason, are all indicators of an immune problem. He is not so sure and I have never been sure that this is just all pots and an autonomic problem. Something is causing my body to attack itself and I have to find out what it is first. I blood test and urine test numbers are coming back worse every 3 or 4 weeks when I go for test. If it was an autonomic problem, it would not cause protein in my urine to go up, and my liver numbers to go up. There is some medical condition going on that did all of this and I'm soon going to find out what it is.

 

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Seems I found my root cause of POTS after 8 months. 

Last Liver test came in and I have NASH. Non Alchoholic Stepto-Hepatitus. A form of fatty liver disease that is more seeious since it leads to Cirrosis. It is an inflammed fatty liver. Yes I probably do have POTS because of this, but a lot of the symptoms are from the inflammed liver.  Don't know yet what the doctor will say and how to deal with the livdr issue I just got the results. If this can get better with the liver, then I will work on the problem with an Autonomic Specialist.  At this point I dont know how many symptoms are being caused by the liver or from POTS. I have to work on the liver problem 1st. 

The constant inflamation with my body trying to fight off the inflamation caused a big problem with my whole system. And its getting worse. 

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In order to understand why Dysautonomia is always caused by something you need to understand how the Autonomic nervous system works. 1st there are several parts in several locations. From the Brain stem, down the spine, to unprotected wires (nerves) that branch off to all the organs of the body. These branches are held in place and woven through connective tissue.  Virtually anything that can damage connective tissue can damage Autonomic nerves. Unfortunately technology still does not have an adequate way to view these nerves. Many years ago I tried to solicit a medical tech university to work on it and I did not get very far. They do not see the urgency of such a device because so few people are diagnosed or rather so many are undiagnosed. Anyway that damage probably accounts for most Dysautonomia but not all maybe 70%. The other parts are chemical, spine and brain and they affect neurotransmitter dysfunction, structural abnormalities or injuries, ect...  So with Autoimmune Disease they are a type of Connective Tissue Disease. Ehlers-Danlos Syndrome or EDS is a Genetic Connective Tissue Disease. Infections like Lyme disease can damage, you guessed it, connective tissue. Same deal with toxins, parasites, and so on. Surgery can damage it too. Then there are people have hormonal disease like Diabetes type 2, Addison’s disease, thyroid disease and this interferes with Autonomic chemicals. Then there are people who get injured, surgeries, pregnancies, chairi malformation, ect.. and they may have had some damage to their spine, Brain stem or the autonomic structures. Then there is Mitochondrial Disease altogether different from the above. It is a genetic disorder that affect energy in the body. Not just physical energy but electrical signals and power. 

So you see there is not just one group of things that causes Dysautonomia. Dysautonomias are major symptoms of other illnesses. But since those other illnesses have all different specialist they usually overlook the Autonomic symptoms or worse blow them off. It’s slowly starting to gain some attention, but not enough.

It all starts with a good Dysautonomia work up and unfortunately doctors have no guidelines about that yet.  And then it should be followed by too university hospital specialist in virtually every field doing biopsies and very thorough testing for other illnesses.. 

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@RichGotsPots So how do you classify hyperadrenergic POTS that causes elevated norepinephrine levels with all the fixings, was present since childhood and runs in the females of the family through 3 generations?

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On 7/29/2019 at 6:45 AM, Pistol said:

@RichGotsPots So how do you classify hyperadrenergic POTS that causes elevated norepinephrine levels with all the fixings, was present since childhood and runs in the females of the family through 3 generations?

By classify do you mean which causes are there for Hyperadrenergic POTS? If so, unfortunately there is not any research that I know of that matches different types of Dysautonomia I.e. OH, IST, POTS, HyperPOTS, ect.. to specific causes. I do see it mentioned, on rare occassions, anecdotally. For example Dr. Roy Freeman has mentioned some prevalence of OH or Delayed OH to some conditions like Diabetes Type 1.  If there was a study I think we would begin to see a pattern for each and every cause. It would would be slight but still medically relevant for clinicians testing patients. For example if OH is about 30% more prevalent and NCS is 20% less prevalent for Diabetes patient that may help for quicker diagnosis. It is fairly simple to put together using retrospective patient files from a dozen Autonomic clinics. Just no one is thinking to do it on that level. The smaller individual physicians do not have large enough patient files for good epidemiological studies like that unfortunately. I hope one day we get some good researchers involved..  

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Hi,  today is my first day being here.  I am a 31 year old female.  I am new to POTS and I don't have an official diagnosis.  I believe I might be dealing with POTS.    My issues started in January of 2019,   with mild hypokalemia and frequent PVCs.  Before this I felt perfectly normal.  I did have increasing fatigue but I chalked it up to the lack of activity and being overweight.  I took a trip to the ER because the PVCs were very bothersome.  I was treated for esophagitis and anxiety and sent on my way.  Over the next few months I noticed that a lymph node on the right side of my neck was enlarged and had been present for more than 8 weeks.  I had an ultrasound done with normal results.  The swelling does not respond to antibiotics and is still there to this day.  I started developing nightly episodes of tachycardia that would wake me up out of sleep and I had to sit up and try to get my mind on something else while I waited for them to calm down.  These episodes became longer and more frequent.  I have had 4 more trips to the ER from April to June.  Each trip with more severe symptoms.  My heart would pound and race at rest and be much worse with even the smallest bit of activity (90s at rest and 130s just standing),  horrible tremors, extreme fatigue and muscle weakness, light headed and dizzy upon standing and rising blood pressure.  Blood tests reveled critically low potassium,  2.6 at the lowest, low iron and ferritin.  I was currently taking Metoprolol 25mg twice daily and Hydrochlorothiazide 25mg once daily for elevated blood pressure due to poor diet and being overweight.  My beta-blocker was increased to 50 mg twice daily and changed from fast acting to extended release.  My PCP and I both agreed that I should stop the diuretic.  At the time I believed that was the root of all my problems.  As of my last blood test my potassium has returned to normal ranges and I am taking 65mg of elemental iron to treat the iron deficiency.  I did not have anemia, my hemoglobin, hematocrit and RBC count were all within normal ranges.  Although my Mean Cell Volume was starting to drop.  After being treated and working on all these things I only had slight improvements.   My blood pressure drops when I stand up and sometimes rises when I stand up.  There is a lot of fluctuation in my blood pressure depending on my posture.  It is normally with in good ranges when I am laying down not moving.  The only symptoms that improved were the fatigue and the pounding heart, and it is only slight improvements.  I still have the increase in heart rate when I stand or do anything other than sitting or lying down.   I still have tremors that wont go away.  My chest is constantly tight and heavy.  Exercising is difficult and I become very short of breath.  I have left sided fatigue and numbness with left sided chest pain that comes and goes through out the day.  My vison is blurrier than normal.  I don't have much of an appetite (I cant tell if this is a symptom or if it is because I am scared).  I have a lot of bloating with loose bowel movements and constipation that alternate.  My symptoms seem to be more pronounced in the mornings.  I am so frustrated and everyone I speak with is very quick to dismiss my complaints as psychological ailments,  and that I am doing this to myself.  I have had numerous EKGs,  Treadmill Stress Test,  Echocardiogram,  and a Coronary CT Angiogram.  All unremarkable.   My thyroid function was checked and the only abnormality was a sluggish T3.  I had one short episode of AFIB in 2016 and that was the one and only time that has happened.  I don't know what to do or where to go.  I have another Cardiology appointment tomorrow and I am going to address these issues with him.   I know only doctors can diagnose but does this sound similar to POTS?  I appreciate any help I can get navigating though this.  Thank You! 

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