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Mapo1964

I'm so sad

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I'm new, but having been reading for several months.  Just looking for some encouragement, I feel like everything out there in the internets is so depressing and not a lot of hopeful success stories.  I have joined a few Facebook groups, but it's hard to get anyone to respond.  

Looking back, I've always had this.  Teenager, passing out and outgrew that in my 20's, just like literature says.  But over the years, there were symptoms, I just didn't know.  Like feeling horrible and exhausted after a hot shower.  Fatigue.  "Good lord, I'm out of shape!  Why is my heart racing?!! I feel so much better if I just laid down."  Intense headaches if I tried cardio.  BUT, I functioned.  Not like everyone else, but I raised 3 children and worked.  I traveled, I did everything I wanted to.  

2 months ago, I was at work.  Got heart flutters and passed out.  I woke up as a different person.  I can't get out of bed.  I'm weak.  I shake.  I don't want to eat. My legs and arms are going numb.   I'm disoriented.  I sit and cry.  All day and night.  I've been in the ER three times scared, I don't know how to fix it.  I increased water and salt to no avail.  I haven't been at work.  I just search for positive stories saying that maybe I can get back to work again and I am met with stories of disability and wheelchairs.  Some sites state that 90% of those with POTS, once treated, lead productive lives.  I'm beginning to think it's a lie.  

I have an appointment with a electrophysisist in the middle of October.  I have had EKG's, echos, CT Scans of my heart and my lungs.  MRIs of my brain.  And was given Xanax to get me over this "hump."  I can deal with the fast heart rate, I always have.  And when I say so, I will get up at walk 3 miles every day.  So what is the block?  Why cant I function?  Sometimes, I wonder if I have a name for it now and I'm allowing it to cripple me. 

 

Any encouraging words that there is a light at the end of this awful tunnel?  Thank you for reading and for any responses. 

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I’m so sorry you’re having such a tough time .  I can only share my experience and it does get better.  I’ve had pots for almost 10. Years and in my experience I go up and down or peaks and valleys.  I like to think of it as remissions and relapses.  I have been fully functional and independent for months at a time.  I was initially bed bound for the first year but it’s about being kind and patient with yourself and knowing your limits and understanding it doesn’t have to be permanent, for with God all things are possible 

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I'm sorry to hear how hard it has been. I know what it's like to be stuck inside, in bed, tired, and not able to work. Though things are far from perfect, I'd say I'm functioning at about 70% most of the time, which is amazing compared to being bed bound. I do not technically have POTS, but I have a bunch of dysautonomia symptoms, including anxiety/panic and fatigue. I now work from home for the same company I was working for before my illness. I try to work hard on the days I feel good to make up for the days I don't. Working from home is tough because you're alone, but it does give me a certain sense of purpose and joy to be able to do something I can enjoy and to make an income. (Otherwise we couldn't afford the medical bills!!) What has been most helpful for me on my journey has been prioritizing sleep over everything. Sleeping any time I feel tired. Also, getting basic exercise every day, which is usually a gentle walk or gentle yoga (I never thought I'd be doing yoga, but now it's one of the few options of movement I can do when it's hot outside). Trying to enjoy nature and making sure I only focus on beneficial relationships. My counselor always tells me to not feel guilty about focusing on doing things to heal my body... I've also changed the way I eat to almost all whole foods...no processed foods and make sure I eat in such a way that controls my blood sugar. All these things have made a slow but sure difference for me and now I find myself in a place where I'm definitely functional, though I do have a number of limitations. I want to add that my biggest source of encouragement medically speaking has been my functional medicine doctor. He is confident that my health can improve, and his confidence has really helped me.

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I developed POTS in 2011 and I was essentially bed ridden for months. I also struggled in the first 18 months to get the right diagnosis and the right medication mix for me. I found that over time and with careful graded exercise I got better. I returned to work in 2013 and each year I have improved, slowly but surely, to being almost back to full health today.

As my doctor said "recovering from POTS is a marathon not a sprint". It's hard, but please take heart that so many people do get better with time. 

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Thank you everyone!  Do you mind sharing what has helped you get back to "normal"? I am going to try to start the adrenal cocktail.  I know I have issues with them and I figured potassium and salt can't hurt.  At this point, if someone told me taking arsenic pills would get me back to normal, I would buy a crate!  

 

Macca, I love that your doctor said "recovery."  It means it's possible.  I'm alone on this journey, single mom.  I have to be able to work and support myself and have insurance.  I think that it adding to my stress levels and the frantic search for a miracle.  My mom is also battling lung cancer again.  We found out a week after I passed out, so it hit me all at once. I wonder if my body is saying no more due to stress.  I have never had anxiety, so I don't know what it looks like.  I'm wondering if my body is on high alert and it is exacerbating the POTS.  

Thank you again for listening! 

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Stress has a lot to do with our symptoms and how our body reacts.  

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Welcome to the forum. 

I was bedridden and homebound 2002-2003.  I slowly improved and although I have relapses from time to time they've become increasingly less severe and shorter lived.  For me, this biggest factor for recovery was time.  However, fluid and salt helped and helps.   I still take a very low dose beta blocker.  I also took a low dose SSRI for awhile and I believe it helped.

I've been on this forum since that time and I have seen many people come and go--and my observation is that most people do improve--either with meds or just with time or both.  My specialist says this as well.  He has said the average time to recovery is 4 years.  I was disabled for about a year.

I think it's good to have hope and it's reasonable to!  But I know it's hard when you feel really poorly.

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My POTS kicked in about this time last year.  I was bed ridden for 2.5 months and lost my job because of this stupid condition.  I felt so hopeless, depressed, and frustrated thinking I wasn't ever going to be able to function again. I was lucky enough to have been able to recover though.  By December I was back on my feet and by about February I was pretty much back to normal.  Finding a good doctor and understanding the physiology behind the symptoms helped me tweak my treatment to a stable state.  My POTS was a side effect of being hypovolemic from a RAAS dysfunction - so Losartan, Clonidine, increased anti-oxidants, and increased sodium and fluids gave me my life back.  

Hang in there - finding the right balance of meds and other treatments is doable, but it takes time.

 

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You sound just like me.  My dysautonomia got better. I was able to resume work and have a mostly normal life as long as I stay within limitations, The Dinet website has a ton of great information, so I would start there. You can read about medications and doctors in your area. Finding the right medication was what helped me get back on my feet, then I exercised and my recovery built on itself. I no longer need meds. 

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Thank you!  I hope to get back soon, but I am so scared that I won't.  I have read everything I can find.  And it seemed everything that may show promise, would be torn apart here.  LOL 

It just seems to me like it should be simple.  If POTS is because your autonomic system is dysfunctional, balance it!  I've read how to balance your parasympathetic system.  Yoga, singing, om-ming, meditation, detoxing heavy metals, eating right for your immune system, adrenal cocktails, earthing, electrolyte balancing...it seems easy, so why is everyone still so sick? 

Thank you for understanding.  My friend is begging me to take antidepressants.  For the first time in my life, I may try medication and the one medication I have been dead set against my whole life.  But, I am hopeless.  

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Everyone has a different way of thinking about dysautonomia. In my case it wasn't a simple Imbalance that can easily be fixed through yoga, diet etc. I think of it this way, if you have bad vision, you can eat all the carrots you want and take supplements, you will still need glasses.  If you have diabetes, you have to take insulin, etc. 

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I agree yogini.  And it may not just be that everything thinks about it differently but everyone has different extent of disability and unique constellation of symptoms--and different causes too.  Some are probably greatly helped by change in diet, or exercise, some people just get better with time, but it has been shown through research that some to many patients benefit from medications.  Still a lot not well understood unfortunately.

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