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jeff_jefferson2

Has anyone made a career change due to their pots/dysautonomia?

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Of course I just had to be a welder in construction before I was diagnosed.  I don't feel like I can do the things I used to do in terms of psychical work. Certain things I can but no job is going to want to accommodate that. It also comes down to a safety aspect as well. Has anyone changed careers?

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I had to completely give up working. What else can you do skill wise and medically? I can see how it would be dangerous to continue welding. 

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Yeah my career changed to professional laying down in bed. Went from always vertical to always horizontal. I have a few side jobs. Taking medical tests. Waiting in a lobbies. Looking at documents that tell me how much I have to pay etc. 

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@jeff_jefferson2 - I was a RN when I became ill with hyper-POTS. I could no longer be active in direct patient care due to the many symptoms and had to change to a desk job ( still RN ) in a wheel chair with decreased hours. Once it was obvious that this no longer worked out either I had to stop working and now am on SSDI. However - I do know of people who are able to work in positions that do not require physical activity OR being upright and they are working full-time despite a POTS diagnosis. It really boils down to knowing what you are capable of and then applying the limitations to your job. Best wishes!!!!

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1 hour ago, KiminOrlando said:

Hey, @Derek1987. We have the same job! Tedious, isn't it? And I have yet to get paid. Where is HR? I would like to complain.

Lol I used to think it would be my dream job. Are you pursuing disability or on it already?

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50 minutes ago, KiminOrlando said:

On it already. It was quite a fight and I had an attorney. 

What was the diagnosis that gave you the win? Or Any other details you want to share on how you did it.

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I have a desk job. I scaled back and took some time off, but now am back at work.  I think it would be harder to do a physical job.

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19 hours ago, KiminOrlando said:

Hey, @Derek1987. We have the same job! Tedious, isn't it? And I have yet to get paid. Where is HR? I would like to complain.

Me too, wish the pay was better & we ever got a holiday from it!

I was a GP when I became ill. I continued working for a while, 2 days a week, my job was mostly sitting down anyway, I had a chair that tilted back and a crate under my desk to put my feet on, but I reached the point it was no longer safe or sustainable and had to give up working. 

I was never into the academic side of medicine, I much preferred the front line, but if I became able to work again, I would go into research in the field of autonomic disorders. 

Not everyone has to give up work completely though, many people do stabilize on medication, I am just difficult because I produce no aldosterone and do not tolerate the only synthetic replacement.

Even if you have to retrain in another occupation, if you can sit upright consistently without syncope or disabling symptoms, there are still a lot of rewarding paths out there. Flexible hours, scope to work from home are things to look for.

I hope you manage to find something that fits. 

B xxx

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I'd like to. Retire. I need 5 more years to get a pension where I work. Not sure I'll make it. 

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On 5/7/2019 at 12:18 AM, Derek1987 said:

What was the diagnosis that gave you the win? Or Any other details you want to share on how you did it.

I also have an autoimmune disease so that in combination with dysautonomia and Hashimoto's thyroiditis is what did it. I just had to requalify with a full and complete re-evaluation process.  It was an 8 month process and I was slated to see a Social Security doctor for an examination. 

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On 5/7/2019 at 5:18 AM, Derek1987 said:

What was the diagnosis that gave you the win?

I am in the UK and still fighting for release of my occupational pension, but I think having EDS diagnosed helped me get government disability. 

You have mentioned your father having similar problems, & EDS is hereditary. Any current or previous flexibility, skin, joint, digestive or surgical problems?

If you think that could be you, look up the Beighton score & maybe see a geneticist. 

B xxx

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49 minutes ago, bombsh3ll said:

I am in the UK and still fighting for release of my occupational pension, but I think having EDS diagnosed helped me get government disability. 

You have mentioned your father having similar problems, & EDS is hereditary. Any current or previous flexibility, skin, joint, digestive or surgical problems?

If you think that could be you, look up the Beighton score & maybe see a geneticist. 

B xxx

I'm not sure about those issues you mentioned. My dad and I don't talk on a regular basis. But I did talk to him recently about my health. I know he takes bystolic to slow his heart rate down. He takes a medicine for tremors and I know he has heart palpitations. His hands have shaken his whole life and so have mine. He said he just started getting heart palpitations but I got them in my very early 20s. Those are symptoms we share but I have more symptoms and more severe. My dad is able to work and function. One of my doctors told me usually when a disease passes down, it gets worse. My autonomic specialist doesn't think it's hereditary but who really knows.

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@Derek1987 - hyperadrenergic POTS runs in 3 generations in my family. My 2 sisters were both recently diagnosed ( both in their 50's ) and my mother also was big time symptomatic in her 50's, causing her to stop working. I got ill when I was 42 but in retrospect had symptoms all of my life, just was able to compensate. 

14 hours ago, Derek1987 said:

One of my doctors told me usually when a disease passes down, it gets worse. My autonomic specialist doesn't think it's hereditary but who really knows.

I was told the same - and in my case it is true. Of all 3 generations I am the only one with seizures and have the most dramatic symptoms but it has been progressing despite effective medications. About twice a year we had to increase or change my meds. Currently I am very stable due to weekly IV fluids. What I find curious is that in my family it seems to be only the WOMEN that have POTS - 2 brothers and nephews are fine. However - my brother's daughters have symptoms, so it must be passed down by males as well as females, just the males are carriers???? In your case - if hereditary - it would be opposite. Hmmm ...

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I mostly stabilized on medication, so I can still work and go to school. I'm still not fully functional, though, and I have to have a job I'm able to sit. It's really hard finding a place like that when you're 19, in college, with hardly any work experience besides minimum wage positions. 

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