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Lavender90

when did your pots start ?

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hi me again just thought I post this …. I been looking see if anyone else got sick after a operation? mine started dam smack in middle of c section six years ago after my little girl was born I had what they  called a heart murmur couldn't turn to the left felt nauseated dizzy I lost a lot blood tmi it was on my partners feet he was at my head 😲this didn't happen with my first csection I was awake for both they clean me up moved me a lot I was under the impression was meant not move u after spinal block ? all my problem's with my bp pressure my heartrate my extreme  weakness started after this 22oct 2012 I lost a lot my freedom independent  I cant go anywhere alone I struggle wash my face etc most days let alone look after my children as I should without help my mum and husband does anyone think this caused my pots? or is it me just being  over thinking …. am in uk 

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1 hour ago, Lavender90 said:

hi me again just thought I post this …. I been looking see if anyone else got sick after a operation? mine started dam smack in middle of c section six years ago after my little girl was born I had what they  called a heart murmur couldn't turn to the left felt nauseated dizzy I lost a lot blood tmi it was on my partners feet he was at my head 😲this didn't happen with my first csection I was awake for both they clean me up moved me a lot I was under the impression was meant not move u after spinal block ? all my problem's with my bp pressure my heartrate my extreme  weakness started after this 22oct 2012 I lost a lot my freedom independent  I cant go anywhere alone I struggle wash my face etc most days let alone look after my children as I should without help my mum and husband does anyone think this caused my pots? or is it me just being  over thinking …. am in uk 

I had laminectomy and fusion L4-5 2 months prior to this. Not sure if it's related. I also had GI issues and came down with diplopia before the operation. I think something is going on with my body that isn't right. 

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I have read a fair bit of info about surgery being one o f the common "causes" of POTS. It seems totally reasonable based on what I have read.  My symptoms I think started after a really bad poison ivy episode with prednisone. After the prednisone, things started and then went away for awhile. Now back again.

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Mine started after a brief run. Haven't felt right since. I suspect I have had it longer though. And my 16 year old was just diagnosised as well so that helps support my theory. I had assumed I felt the way I did because it was a normal response to smoking (started when I was 15). High HR, occasional heart beat skips, heart palpitations (didn't know that was what I was feeling), and exercise intolerance. Even the lightheadness upon standing. It was liveable. Never thought anything of it until it got bad, and then the dizziness and breathing issues started. That was all 3 1/2 years ago. Just turned 30. 

I think for some people surgery can trigger it due to laying down so much, or depending on the surgery, making the body mad and malfunction. Finding an underlying cause can help with piece of mind and treatment. But most people don't find it. 

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@Lavender90 I had scoliosis surgery when I was 13, but my POTS symptoms didn’t start until I was 18 after a bad bout of mono. I was bedbound longer from mono than I was major back surgery... figure that one out... but we are assuming it was my trigger. 

Hope you are keeping well. 

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4 hours ago, StayAtHomeMom said:

Mine started after a brief run. Haven't felt right since. I suspect I have had it longer though. And my 16 year old was just diagnosised as well so that helps support my theory. I had assumed I felt the way I did because it was a normal response to smoking (started when I was 15). High HR, occasional heart beat skips, heart palpitations (didn't know that was what I was feeling), and exercise intolerance. Even the lightheadness upon standing. It was liveable. Never thought anything of it until it got bad, and then the dizziness and breathing issues started. That was all 3 1/2 years ago. Just turned 30. 

I think for some people surgery can trigger it due to laying down so much, or depending on the surgery, making the body mad and malfunction. Finding an underlying cause can help with piece of mind and treatment. But most people don't find it. 

The interesting thing is that after my back surgery, I was up and when I got home, I got up every 1-2 hours to walk. By the time I went back to work I was up to 2.6 miles total a day and two weeks after being back to work it started. The only other thing that comes to mind is that I had a brain MRI with contrast. Then again, the S Show started before that. The only things I can think of before the gastro issues which started it all was that I went to florida a few weeks before, I had undercooked fish a week before and I had started running on a treadmill. I also did some construction in the house redoing a shower and I had to rip out termite damage and there was mold too. I sprayed everything down with bleach though. Nothing else sticks out. I wish I had my old life back. 

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Sorry to hear u had a hard time to i also lived in house with mold i used bleach of walls every other day they is connection with the mold and me/cfs to 

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Mine started when I was 7 years old, but was undiagnosed until my mid-40s. (My teens were horrendous as I was accused of having an eating disorder, anxiety, you-name-it anything not to look any futher than a sickly, fainting teenage girl.) No-one has been able to think of a precipitating factor and I had always been a super-healthy, all day outdoors, up trees and wading rivers kind of girl before.  Family and friends say I became a different child pretty much overnight.

My 14 year old son was diagnosed last year after roughly 2 years of symptoms and we now know that hEDS and EDS run through the family.  He is currently diagnosed HSD.  Eldest son has the heart rate increase and is also pretty extreme in terms of his hypermobility, but is aymptomatic so not diagnosed, but has other issues.  So I assume there is some genetic factor at work.  

My younger sister, who is actually a half-sister, so not 100% the same genetically has lots of signs of dysautonomia but, despite extensive testing, no-one has been able to pin them down to a specific diagnosis.  My mother and both sisters are hypermobile like my son and myself, but they all have auto-immune conditions including rheumatoid arthritis and hypothyroid as well as IBS, whereas I don’t.

 

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Although I had symptoms since childhood - including fainting - I did not get seriously ill until my early 40's. Thinking back I had my daughter in 2004 and had problems since then but I compensated for them. In 2009 I was suddenly full-blown Potsie. The connection to delivery ( C-section ad epidural ) came only much later.  

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1 hour ago, Womble said:

Mine started when I was 7 years old, but was undiagnosed until my mid-40s. (My teens were horrendous as I was accused of having an eating disorder, anxiety, you-name-it anything not to look any futher than a sickly, fainting teenage girl.) No-one has been able to think of a precipitating factor and I had always been a super-healthy, all day outdoors, up trees and wading rivers kind of girl before.  Family and friends say I became a different child pretty much overnight.

My 14 year old son was diagnosed last year after roughly 2 years of symptoms and we now know that hEDS and EDS run through the family.  He is currently diagnosed HSD.  Eldest son has the heart rate increase and is also pretty extreme in terms of his hypermobility, but is aymptomatic so not diagnosed, but has other issues.  So I assume there is some genetic factor at work.  

My younger sister, who is actually a half-sister, so not 100% the same genetically has lots of signs of dysautonomia but, despite extensive testing, no-one has been able to pin them down to a specific diagnosis.  My mother and both sisters are hypermobile like my son and myself, but they all have auto-immune conditions including rheumatoid arthritis and hypothyroid as well as IBS, whereas I don’t.

 

Sounds kind of like me. I am currently in the process of ruling out hEDS. ANA keeps coming back negative even though it runs heavy in my family (my mom and 2 aunts). My kids and I are pretty flexible so I think it is time to rule it out. If we don't have it then I plan on fighting for a serum catacholmine test (the urine one came up normal twice). 

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Mine started just over a year ago following a several-week period of some of the worst stress and worry of my life.  However, I had symptoms a few years leading up to that that I think were related - heart palpitations (that I chalked up to menopause); this strange constant peeing that would come and go for no apparent reason; and this overpowering intolerance to heat, when being out in the sun/heat never used to bother me.  At work, I would go out for walks at lunch time when it was hot out and after a few minutes, it was as if someone just pulled the plug on my energy and I had to get out of the heat.  My POTS doc thinks I had it coming on for some time but was able to "fight it off" with my daily routine of working and walking.  I had retired five months before my symptoms came full-on, and he thinks being retired plus the aforementioned stress and worry basically allowed the POTS to gain a foothold.

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I feel like a real weirdo every time I tell my story - I was totally fine until 5pm, 4th August 2014. My dad came through the door with a balloon & my two young kids started fighting over it. I thought right, I need another balloon quick so there is one each. I went to the drawer where I knew we had some balloons, got one out and started to blow it up. It was really hard, not like a normal balloon but I was really determined and blew until I blacked out. 

I came to after a minute or so but still felt very faint. At first I wasn't concerned, people commonly faint after a forceful Valsalva, but as I lay on the floor waiting for the blood flow to properly return to my brain, time went by & I didn't feel any better. I was still down after 20 mins and although I didn't fully lose consciousness again at that time, the overwhelming feeling that I was going to kept coming in waves, despite lying flat on the floor. I still remember watching the time tick by on the oven clock, that's how I know exactly when it started. My dad called an ambulance & I was taken to hospital. 

Everything checked out normal except that I continued to feel very faint, couldn't stand up and was noted to have a high heart rate when I tried,  although it took a further 3 years to be officially diagnosed with POTS. I later discovered that what I'd tried to blow up was a water balloon that you fill from the tap. It was never going to be inflated by mouth. 

That one act in that split second was the onset of severe full blown POTS for me & the end of my lovely life as I knew it. I would give anything to have that day again.

I was since diagnosed with HEDS but my other symptoms of it are very trivial & I doubt it would ever have been diagnosed at all if not for POTS.

Of course it could have been waiting in the wings for me anyway and triggered by something else at some point but I will never know, and could have had who knows how many more active years with my children if not for that. 

B xxx

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Hello @bombsh3ll - what you describe rings true to me, too. Although I had issues with dysautonomia since childhood I always was able to compensate. But after I had my daughter ( unable to go through vaginal delivery despite BEARING DOWN heavily, needing a C-section in the end ) I slowly developed POTS symptoms until I was no longer able to compensate. The realization that the labor process my have been a trigger is just my own theory, no one has told me that this was the onset of POTS for me but I believe it is a possibility. 

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10 hours ago, Pistol said:

But after I had my daughter ( unable to go through vaginal delivery despite BEARING DOWN heavily, needing a C-section in the end ) I slowly developed POTS symptoms until I was no longer able to compensate. The realization that the labor process my have been a trigger is just my own theory, no one has told me that this was the onset of POTS for me but I believe it is a possibility. 

Wow yes a lot of women report onset after childbirth - I'd assumed that could be due to blood loss or hormonal shifts & not made any connection to my own case as I never got it after giving birth, but what the forceful straining is implicated in some way as the common denominator?

It would be really interesting to break down whether postpartum onset cases had laboured naturally (even if like you they ultimately had a section) vs just had a section without going into labour. I may start a poll on that. 

Have you ever been evaluated for a spinal CSF leak? I just had an MRI with contrast last week to check for this, as CSF leaks can also be triggered by forceful straining especially in people with EDS like I have, and can produce POTS symptoms in particular the splitting headaches when upright that go away lying down. 

B xxx

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3 hours ago, bombsh3ll said:

Wow yes a lot of women report onset after childbirth - I'd assumed that could be due to blood loss or hormonal shifts & not made any connection to my own case as I never got it after giving birth, but what the forceful straining is implicated in some way as the common denominator?

It would be really interesting to break down whether postpartum onset cases had laboured naturally (even if like you they ultimately had a section) vs just had a section without going into labour. I may start a poll on that. 

Have you ever been evaluated for a spinal CSF leak? I just had an MRI with contrast last week to check for this, as CSF leaks can also be triggered by forceful straining especially in people with EDS like I have, and can produce POTS symptoms in particular the splitting headaches when upright that go away lying down. 

B xxx

I had L4-5 laminectomy and fusion last fall where they said they found a CSF leak from a bone spur. I have to wonder if it was iatrogenic. Anyway, he stitched it and used a blood patch, but I had one of those whopper headaches the day after the surgery. I haven't had that since, but I devoped POTS 2 months later. 

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I'm 31. Not sure when it officially started. But I'm suspecting the major symptoms started hitting me early 20s or maybe even 19. At least fatigue and heart palpitations. Then 2017 was the first time I fainted. 2018 is when I've become basically useless and still basically can't do much and suffer daily.  We are suspecting mine is genetic and passed down. My dad has mild symptoms of what I go through. He can still function normally. 

 

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Diagnosed about a month ago (probably hyperPOTS) but have been symptomatic since the birth of my second child 3 years ago. In hindsight, have had mild symptoms for longer, but noticeably worse since then.

On a sidenote, got whiplash in December (said child kicked me in the head, horseplay gone wrong!) and had a big flare after that!

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