Just diagnosed with POTS..lots of questions. Please respond!

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Hi,

After a long time of being accused of being a hypochondriac with severe anxiety, I have finally been officially diagnosed with POTS. While it is somewhat of a relief to have a diagnoses, I know I have a long road ahead of me trying to find the underlying cause of my condition. I was just wondering what some of the common ones were. I struggle with fatigue, muscle weakness, dizziness, digestion issues, severe nausea/loss of appetite, bladder issues, dry eyes that are extremely sensitive to light, dry skin, and dry mouth. I worry about Celiac disease and/or srogens syndrome (sorry for incorrect spelling), but most of all I worry about MS. Or maybe even all of the above sad I was just reaching out to see how often people are diagnosed with an autoimmune disease after being diagnosed with POTS, because I know that even POTS alone causes many symptoms in the nervous system. 

I was also wondering if there is really any hope as far as feeling better with treatment. My number one complaint is fatigue, loss of appetite and nausea being a close second. I pretty much have no faith as of right now because I have to force myself out of bed every day, and feel like I have become a professional actor as far as having to pretend nothing is wrong, or that I’m at least functional. Because usually I’m not and it’s just really hard. I have so many specialist appointments this coming year and I’m really scared. Any advice and/or support would be greatly appreciated. Thank you so much. 

1 like, 15 replies

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15 Replies

  • Posted

    Hi Kim, I am sorry for your dilemma. I am now 71 yrs old and have been looking for answers for 17 yrs. No one had taken the condition to seriously when I blacked out in 2000 while driving. Numerous heart tests and of course drug and alcohol testing with no results. I have a building number of medical issues but the doctors seem to think it is better to throw pills at it than look for the cause. Fast forward to 2017 I blacked out driving and again they could find no problem. 3 months later they installed a pace maker after my monitor showed a heart pause of 3.9 Seconds. We thought the problem was solved. In Sept 2017, I was standing at a counter signing a work order and blacked out. I fell backwards and fractured the rear skull with front brain concussion and bilateral bleeding for which I am still being treated. Since my 2000 episode, I have had 4 angiograms, 4 ultrasounds of heart and 2 of carotid arteries, brain surgery, tilt table test and Qsart test. The doctor has told me we may never find the answer since Pots and Dysautonomia have so many different symptoms and characteristics. 

     I hope you are able to find answers to your problems, I will keep you in prayer.

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    • Posted

      Wow! I’m so sorry for everything you’ve gone through. I haven’t driven in months for the very reason that I don’t want to pass out at the wheel. I hate that doctors are so quick to throw pills at you as opposed to getting down to the root cause of things. I’m not even 30 yet and at this rate I don’t even see myself making it to 35 sad thank you very much for your kind words and I will keep you in my thoughts and prayers as well
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  • Posted

    All my symptoms line up with how you are feeling and the way you are feeling is the same as I would explain it I get my tilt table test results in 2 days and it’s been 1 year I have suffered with all these symptoms and I am also at the stage where people around me are fed up and call me a hypochondriac and I too have to prentend nothing is wrong with me on a daily basis but it’s a living hell and from what I’ve explained my worst symptoms line up with your worst I also worry about other tests I might have to have with my mother also being celiac I am only 21 and have been unable to work for the past few months I hope everything becomes more manageable for you 
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    • Posted

      I’m so sorry that you are in the same living hell as I am. I wouldn’t wish this crap on my worst enemy. I think my mom is celiac too but she refuses to get tested so I’ll never know for sure. Let me know how your appointment goes. It sucks being accused of being a hypochondriac, it really takes a toll on your mental state. You know your body better than anyone else and it’s so frustrating when you know something is wrong but no one will listen, especially doctors who are supposed to be there to help. They are so quick to take the easy/lazy way out and blame everything on stress and/or anxiety and just try to shove pills down our throat which only ends up making things worse. 
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    • Posted

      I feel we are in a similar situation I started last year with bad headaches so they sent me for a ct scan after 3 months of complaining of my symptoms and anxiety stress kept being brought up but I was scared they was missing something. After that’s I had an mri my spine months later to check no nerves were trapped as I was getting pains in arms and legs loads of blood tests coming me back fine I am going to for my cardiology appointment tomorrow for my results on tilt table and echo cardio gram 
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    • Posted

      Yep, very similar situations. I have a feeling I’ve had this most of my life, but it just got unbearable within the last 6 months to a year. I always had trouble with exercising even when I was in middle school and high school, and my heart rate was always higher than normal. I could never seem to get in shape no matter how much I worked out. It never got easier over time for me like it’s supposed, and I’ve never been overweight so I know that wasn’t the problem. I always got tired really quickly, much faster than everyone else. But the nausea/loss of appetite/fatigue weren’t really an issue for me until recently. I was in the ER with a viral infection in June, and I just haven’t been the same since. So maybe that set it off for whatever reason. Who knows. Hopefully I’ll get some answers this year. It just sucks because I’m having feminine issues/irregularities too, so I just have a lot going on and a lot I need to address, and it’s hard when I can barely make it out of my bed sad My boyfriend has literally had to force me to go to my appointments because I’ve been so tired. I hope things get better for both of us. Please let me know how your tilt table test goes for real! 
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    • Posted

      I Have been diagnosed today with pots and they have put me on some tablets to see if it helps and are seeing me again in 2 months 
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    • Posted

      Glad you got it diagnosed! Hope that gave you some relief. Keep me posted on how everything goes!
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    • Posted

      Please read my comment above if you don't get the help you need with it!!! I'm glad you were diagnosed but so many doctors won't treat for it!

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    • Posted

      I don’t have it I got tested but my brother got a dna test in America which showed he had the celiac gene even tho he doesn’t have celiac yet 
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    • Posted

      Hi Logan, sorry I took so long responding. I just saw my doctor Jan 29 and the Tilt Table confirmed Autonomic Dysfunction caused by multiple Traumatic Brain Injuries. I have most of thee symptoms you all have and a few personalized for myself. I get Botox and Nerve Block injections for the Migraines which help. I take 700mg Primidone for tremors, had a pace maker put in and now trial and error on blood pressure medications. Like you, people can't understand something they can't see and the hypochondriac label really makes me angry. At least now I have a diagnoses after 17 yrs of fighting for answers. I was diagnosed End Stage COPD in 2002 and sent for lung transplant evaluation. Thank God I didn't go that route because it is most likely from Autonomics. I have been totally disabled since 2002 at 54 yrs old so the self work thing for a hard working man is a bitter pill to swallow. Thank God I have a supportive wife and family because someone who is not afflicted can't understand. The COPD community has a saying, :SICK LUNGS DON'T SHOW." The same with any hidden affliction, so when people ask how are you, I usually smile and say OK or stay home away from people. I also have a very loving and supportive church family who genuinely care. 

      I send love and prayers to my brothers and sisters who walk the same road as I do, Ken

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  • Posted

    I'm sorry to hear this. My twins who are actually turning 17 today have been diagnosed with POTS. First of all congratulations you were actually diagnosed. My daughters were told everything they didn't have and sent home with the comment "well I guess you are that special one that we don't know what's wrong"!!! What?!? Yes I went to supposedly the best children's hospital in Atlanta and that's what I was told. They were passing out and staying  out for hours. They were having psuedoseizures and couldn't walk or talk for hours afterwards. Stomach issues, sleeping all the time during the day but couldn't sleep at night, headaches, chest pains, brain fog, etc.  I could go on and on. I was at my wit's end and my girls were getting worse. Someone told me about Dr Noah Erickson who is in Ohio but will do consultations over the phone or by Skype. He went to medical school and lacked one semester of finishing and decided he wanted to help people instead of just treating symptoms. He started going the route of herbs, supplement, acupuncture, chiropractor, etc. He will tell you when you need to see a regular md. He's not against medicines he would rather help with all natural if possible. First you have to find out what is causing your pots. For my girls it was Epstein Barr virus. He found that out just through simple blood work done at our local doctors office. Dr Erickson sent the medical script down and our lab did the work. He then put them on a rigid diet and supplements. They also had h pylori. It is now gone and their pots is doing much better but you have to be very determined to do what he says don't waiver from it. He is an extremely intelligent man and he sure was an answer to our prayers. Especially when the other doctors couldn't and really didn't care to help us!

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    • Posted

      Thank you for all then info, I will definitely look in to that. Your girls are lucky to have a mom like you. My parents gave up on me a long time ago, right when the first doctor told me everything was just anxiety and stress. They are the kind of parents who think doctors are always right/won’t miss anything. I’ve been called a hypochondriac more times than I can count, and have left so many appointments in tears due to the fact that no one will take me seriously. 
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    • Posted

      I'm so sorry!!! They tried to say that about my girls too but I know them! Pots can cause depression and anxiety but there is an underlying cause. I knew that wasnt the real problem!!! I sure hope you can find help!!

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