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Derek1987

I'm new to the forum. I am scared

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I'm going to make this short as possible. My name is Derek. This all started Oct 2017. I was out to eat with my mom and wife. I'm 31. I was leaning forward to eat then I leaned back when I was done. Suddenly I started getting light headed. I told my family. Then I got really hot to where I started sweating and eventually I couldn't see, hear, or move. My wife said she could feel the heat radiating off of my head and I turned white. The ambulance was called. I started coming out of it but I was so weak I couldn't move. I couldn't talk. When I was in the ambulance the paramedic let me know my blood pressure was coming back up. The doctor at the hospital shrugged it off and said sometimes people just faint.  This incident caused me to have extreme anxiety and worry if it would happen again. I eventually regained my strength.

 

Fast forward to September 2018. It was a Friday night and I was laying in bed. The fainting feeling came on me out of nowhere. I panicked and stood up but it made it worse. I layed down. I didn't pass out but I was having tingling in my arms and hands just like the first time I fainted. I went to the hospital. Did the same exact tests. Everything came out okay. I regain strength and I go home because the doctor shrugged it off again. It was a different doctor.

 

5 days later at work. I'm walking and I have a weird sensation in my stomach and all of a sudden my knees buckled. The tingling returned and I'm on the ground at work. Again I didn't pass out. I go to the hospital. They kept me over night because of the history. They put a heart monitor on me overnight and did an ultrasound. They said everything was good and let me go the next day and I was stressing to them something isn't right and I didn't want to go. They said there's nothing they can do for me.

 

I see my primary care doctor and she sends me to a cardiologist. He takes an EKG and sees my heart is off rhythm yet I took like 8 at all of my hospital trips and were fine supposedly. I wore a heart monitor for a month. They noticed my heart rate goes really high when I stand and is normal when I lay down. Sta ding up my heart rate is around 130. I've had it as high as 156. My heart rate laying down is always in the 70s range. My blood pressure also changes 20 to 30 points depending on if I'm laying or standing.

 

I saw a neurologist and did a test to make sure I wasn't having seizure activity in my brain. It checks out fine. Eventually I'm referred to an autonomic dysfunction specialist. They take Blood and I did a 24 hour urine test. I have a MRI on my brain this week as well. The specialist has the disease herself and had to have brain surgery to fix herself. She was bed ridden for a year. Anyways, my blood work revealed I was exposed to a tick disease. She said it wasn't Lyme but she didn't specify which one. She said it caused damage to my nervous system but the disease is no longer active.

 

After the 3rd fainting incident I haven't recovered my strength. I can't do much. I'm pretty much bed ridden. I almost had a fainting spell today. I went to the doctor and went into Walgreens. Out of nowhere I got that feeling in my stomach and my legs tried to buckle. I somehow stayed up and went to pay. The lady in front of me checking out was paying in change and taking forever. I made it home and layed down.

The autonomic dysfunction specialist has me on some medicine that's supposed to reverse damage to my nervous system. it's called pyridostigmine br. It also is supposed to slow my heart down. She also gave me a flyer thing about autonomic dysfunction which said there isn't a cure.  So her statement and flyer kind of contradict each other. 

I'm afraid I might be disabled now. I've been on short term disability through my jobs insurance but is now going to kick into long term disability with half of my pay. My FMLA is exhausted so it's up to my job wether or not to keep me. I'm not worried about it because there's absolutely nothing I can do. .my job consists of me standing up all day long. There's no way I can do it. I feel weak after taking the trash out and lay down. God will get me through things financially somehow. I just want to be able to do normal things and not live in the bed the rest of my life. And it's scary thinking all of the time, will I faint? 

 

Anyways that's alot of my story. If you can relate or have any advice for me, please comment. Or if you have any knowledge you would like to share please do so. Sorry for the long post. Thanks.

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Hi Derek hugs to you.

One of my first episodes was very similar to your first. It was my first day back to work after having a short leave due to chicken pox. I had gone to lunch and felt so hungry I ate a hamburger and a full bowl of leek soup which I had before with no issue. I was sitting at my desk and all of a sudden I felt faint. I could feel my head or face flush and get hot. I told my coworker I didn’t feel right to get a nurse. I ran in and got my feet up as high as I could in a recliner and my heart took off like a race horse. I did not pass out but was in a full blown episode. About 3 nurses came and got freaked out looking at me. We all thought I was having a heart attack it was bad they were taking my bp offered to call my family got me a wet cold cloth and said sorry but we gotta call the squad. The one said it seemed so serious she was prepared to pull me out of that chair onto the floor and start CPR. If we only had a team of nurses like that 24/7. Like you I did to go to ER the difference whatever reason during my episode was my BP went up not down but in ER all of a sudden it would drop and another wave of symptoms would through me. The doctor was so frustrated he took of the automatic blood pressure cuff and was taking it by hand. Like you this was just the beginning and doctors would either have no answers for me or claim it was anxiety. 

One thing I have done is watch what foods I eat. I do not completely understand why certain foods affect me the way they do. Leek soup has sulfites I believe and that is one thing I have to avoid. My other worst symptoms have occurred after potatoes tomatoes and oranges. Potatoes/ tomatoes are in the nightshade family and oranges are high in salicylates. So I am sensitive to the chemicals in foods. I am not suggesting you are or this will solve anything but for me it is an issue. I cannot eat very much at one time so a full stomach will also set me off. Also I cannot eat my food hot that will also bring on an episode. So one of the thing I can eat is certain meats but I have to cook those meats and let them chill before I eat them. Both the temperature and the fat is an issue for me. My body can handle fat that has been solidified and takes a while to get into my system. Warm fat I cannot handle. My body goes into distress. It has taken me a long time to figure these things out. 

I did spend a year in bed rest at my worst related to heart rates that just seemed totally unregulated. Basically if I was up my heart rate was crazy high. Laying down was the only thing that controlled it. Now I can be up for 15-30 minute intervals and it may speed up but I handle it okay. I just have to sit down soon and I do spend the majority of the day sitting with my legs up so that my heart rate is in the 70’s to high 60’s. 

Fear was a huge factor in the beginning for me too so I understand. The more I have dealt with it the less fear I have. You get a bit desensitized over time and although the episodes are never pleasant and we don’t want or look forward to them we get through them. 

I would suggest trying not to go anywhere by yourself for now that is what I am doing. I had been better and more independent for a while and the past 3-6 months seem worse for me. I am having episodes again and they are happening behind the wheel. I have time to pull over but then I am incapacitated and stranded often in a place no one even knows where I am or what is happening. I should probably get a safety device button to push to call for help because I’ve had difficulty even operating my phone during these. My coordination and focus I just lose it temporarily.

i was able to go on disability for my situation so that helps me a bit although I basically end up buying groceries for myself and my family with the money. But my other bills are paid my husband does have a good job and covers our mortgage and other bills so I guess it works. All my needs that way are met. We were able to get a house with everything on the main floor for me. Laundry and we have a master bedroom with bath attached. The kitchen is not a far walk from the bedroom either so that is nice. It does have a sunken floor so it is one step down and up in places. So if I needed to be in a wheelchair that part might get tricky but I can walk and stand enough to navigate.

It took me a while to accept it but I now ride a disability scooter in stores and recently purchased my own. I had not shopped in over a year because I had collapsed in the middle of the store. Collapsing is something I do and the reason I can no longer work. It was happening on my job and I was to take care of 20-30 people but was not stable myself. 

At first I was so sad not to work I loved my job. Over time though I think I was brainwashed to think I loved my job. There were so many downsides to it that I just did not want to accept. My coworkers some were not that nice and it took so much time away from my family. My illness holds me back from things I would like to be able to do with them but it’s good that I am present in the home for them. I do everything I can and I’m actually happier in some ways now. It’s odd to think I could be happy with this routine there are certainly things not pleasant about it. It does not come from a place of laziness because I am a doer and my brain is always going with ideas. 

I wish I could give you some insight into what your future will bring but it’s impossible for me to know. You could get better totally I believe it and there are all different definitions of better. 

With this condition we can almost go into a remission like state and if you learn what your triggers are you can sometimes ( not always ) avoid episodes. Sometimes though they just happen and you are doing nothing wrong. Just trying to live your life and they come out of nowhere. 

In the beginning my episodes seemed so severe I thought I would die. I was around 42 at the time. When I made it to my 50th birthday I could not believe it. I felt stunned the entire day. I said I don’t need a present this is my present I am still alive to be with and enjoy my family. And here I am now 52. I never would have guessed. Our bodies really can take a lot.

i cannot really tell you what path to take I think you have to find your own. You have every right to do everything possible for yourself. I have been to doctors so many times. Had tests. I even had to have about 6-8 IV iron infusions because I got so anemic while going through perimeopause. I didn’t think I would survive that. The anemia or getting the iron infusions I thought those might kill me but I got through. Everything just seems harder with this condition but life is still possible.

It is most likely different for everyone so this is your experience your story to be figured out in time. Allow times to just relax and not worry if you can. Pretend or hope to be normal again if it helps get you through it. I do. I never give up hope that one day I wake up and I am healed. Until then I just keep going and doing what I can each day. No doctor’s visits planned for me unless something changes. I am wearing a 30 day holter monitor again because my doctor wanted it but I think I am fine and stress just got the better of me this past 3-6 months. Stress management is so important because it just magnifies our issues I think. 

Right before my first episode I thought I needed to divorce my husband. He had just done some really wacky things at Christmas time. We had 4 little children and he had declared that Christmas was going to be all about him. He had ranted and raved put on a big dramatic show and then he went out and purchased a huge big screen tv. Well now a days everyone has one and they are not that expensive. Back then I think he paid $1,000. I thought combined with other things best case for me I just needed to get away from him. Well then I wind up with chicken pox. Which every time I thought geez I just need to get away something would happen to me. So I freaked out thinking I have four little kids to raise how am I gonna do that on my own. Huge storm of anxiety hit me and most likely I was feeling the effects of the illness that had hit me but it was just like a huge nervous breakdown came over me only I could still function and boom my POTS was born out of that wild combo of illness/ stress. That is my true story and I am not sure how many people I have admitted it to but I wonder how many else their illness came on during huge amount of crisis in their life. 

There fore one of my biggest focus is staying grounded. Living stress free to help myself and my condition. Sometimes I fantasize if I could totally eliminate all stress my body would heal.

Oh and my job huge stress. We had constant drama and crisis there so it was all a double whammy for me. They were always in financial crisis threatening to lay us off. I dealt with death and dying and crisis all day at work. The stress on my mind and body was enough to bring an elephant down and that is many people in this society live with. I look back and think how did I do it. I lived 24/7 in total exhaustion. 

Take care of yourself. Number one. Try not to worry too much. I know it is natural and only realistic to have concerns but along with figuring things out take some breaks from the worry and just be. Answers may come to you. 

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Welcome to the forum.  I am sorry you've been experiencing such disabling symptoms.  It does sound consistent with POTS.  It can take time to find the right meds to help you feel better.  It sounds like you are seeing a specialist who can help with this process.  There is not a one size fits all approach, however, most people feel better with increased fluid and salt intake.  Many feel better with IV saline as well.

Most people do improve over time, but patience is often needed.

Take care.

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Welcome to your 30s. I had a similar thing happen. It is like I hit 30 and my body fell apart. Be patient it will get better. Try not to compare yourself to before you got sick. Take it one day at a time. And there are multiple types of medicines that can help. Personally I take metoprolol and midodrine to help me. There are other medication combos I have seen people use on here. Also try to listen to your body as much as possible. There is a lot of good advice on here as well :D

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5 hours ago, lieze said:

Hi Derek hugs to you.

One of my first episodes was very similar to your first. It was my first day back to work after having a short leave due to chicken pox. I had gone to lunch and felt so hungry I ate a hamburger and a full bowl of leek soup which I had before with no issue. I was sitting at my desk and all of a sudden I felt faint. I could feel my head or face flush and get hot. I told my coworker I didn’t feel right to get a nurse. I ran in and got my feet up as high as I could in a recliner and my heart took off like a race horse. I did not pass out but was in a full blown episode. About 3 nurses came and got freaked out looking at me. We all thought I was having a heart attack it was bad they were taking my bp offered to call my family got me a wet cold cloth and said sorry but we gotta call the squad. The one said it seemed so serious she was prepared to pull me out of that chair onto the floor and start CPR. If we only had a team of nurses like that 24/7. Like you I did to go to ER the difference whatever reason during my episode was my BP went up not down but in ER all of a sudden it would drop and another wave of symptoms would through me. The doctor was so frustrated he took of the automatic blood pressure cuff and was taking it by hand. Like you this was just the beginning and doctors would either have no answers for me or claim it was anxiety. 

One thing I have done is watch what foods I eat. I do not completely understand why certain foods affect me the way they do. Leek soup has sulfites I believe and that is one thing I have to avoid. My other worst symptoms have occurred after potatoes tomatoes and oranges. Potatoes/ tomatoes are in the nightshade family and oranges are high in salicylates. So I am sensitive to the chemicals in foods. I am not suggesting you are or this will solve anything but for me it is an issue. I cannot eat very much at one time so a full stomach will also set me off. Also I cannot eat my food hot that will also bring on an episode. So one of the thing I can eat is certain meats but I have to cook those meats and let them chill before I eat them. Both the temperature and the fat is an issue for me. My body can handle fat that has been solidified and takes a while to get into my system. Warm fat I cannot handle. My body goes into distress. It has taken me a long time to figure these things out. 

I did spend a year in bed rest at my worst related to heart rates that just seemed totally unregulated. Basically if I was up my heart rate was crazy high. Laying down was the only thing that controlled it. Now I can be up for 15-30 minute intervals and it may speed up but I handle it okay. I just have to sit down soon and I do spend the majority of the day sitting with my legs up so that my heart rate is in the 70’s to high 60’s. 

Fear was a huge factor in the beginning for me too so I understand. The more I have dealt with it the less fear I have. You get a bit desensitized over time and although the episodes are never pleasant and we don’t want or look forward to them we get through them. 

I would suggest trying not to go anywhere by yourself for now that is what I am doing. I had been better and more independent for a while and the past 3-6 months seem worse for me. I am having episodes again and they are happening behind the wheel. I have time to pull over but then I am incapacitated and stranded often in a place no one even knows where I am or what is happening. I should probably get a safety device button to push to call for help because I’ve had difficulty even operating my phone during these. My coordination and focus I just lose it temporarily.

i was able to go on disability for my situation so that helps me a bit although I basically end up buying groceries for myself and my family with the money. But my other bills are paid my husband does have a good job and covers our mortgage and other bills so I guess it works. All my needs that way are met. We were able to get a house with everything on the main floor for me. Laundry and we have a master bedroom with bath attached. The kitchen is not a far walk from the bedroom either so that is nice. It does have a sunken floor so it is one step down and up in places. So if I needed to be in a wheelchair that part might get tricky but I can walk and stand enough to navigate.

It took me a while to accept it but I now ride a disability scooter in stores and recently purchased my own. I had not shopped in over a year because I had collapsed in the middle of the store. Collapsing is something I do and the reason I can no longer work. It was happening on my job and I was to take care of 20-30 people but was not stable myself. 

At first I was so sad not to work I loved my job. Over time though I think I was brainwashed to think I loved my job. There were so many downsides to it that I just did not want to accept. My coworkers some were not that nice and it took so much time away from my family. My illness holds me back from things I would like to be able to do with them but it’s good that I am present in the home for them. I do everything I can and I’m actually happier in some ways now. It’s odd to think I could be happy with this routine there are certainly things not pleasant about it. It does not come from a place of laziness because I am a doer and my brain is always going with ideas. 

I wish I could give you some insight into what your future will bring but it’s impossible for me to know. You could get better totally I believe it and there are all different definitions of better. 

With this condition we can almost go into a remission like state and if you learn what your triggers are you can sometimes ( not always ) avoid episodes. Sometimes though they just happen and you are doing nothing wrong. Just trying to live your life and they come out of nowhere. 

In the beginning my episodes seemed so severe I thought I would die. I was around 42 at the time. When I made it to my 50th birthday I could not believe it. I felt stunned the entire day. I said I don’t need a present this is my present I am still alive to be with and enjoy my family. And here I am now 52. I never would have guessed. Our bodies really can take a lot.

i cannot really tell you what path to take I think you have to find your own. You have every right to do everything possible for yourself. I have been to doctors so many times. Had tests. I even had to have about 6-8 IV iron infusions because I got so anemic while going through perimeopause. I didn’t think I would survive that. The anemia or getting the iron infusions I thought those might kill me but I got through. Everything just seems harder with this condition but life is still possible.

It is most likely different for everyone so this is your experience your story to be figured out in time. Allow times to just relax and not worry if you can. Pretend or hope to be normal again if it helps get you through it. I do. I never give up hope that one day I wake up and I am healed. Until then I just keep going and doing what I can each day. No doctor’s visits planned for me unless something changes. I am wearing a 30 day holter monitor again because my doctor wanted it but I think I am fine and stress just got the better of me this past 3-6 months. Stress management is so important because it just magnifies our issues I think. 

Right before my first episode I thought I needed to divorce my husband. He had just done some really wacky things at Christmas time. We had 4 little children and he had declared that Christmas was going to be all about him. He had ranted and raved put on a big dramatic show and then he went out and purchased a huge big screen tv. Well now a days everyone has one and they are not that expensive. Back then I think he paid $1,000. I thought combined with other things best case for me I just needed to get away from him. Well then I wind up with chicken pox. Which every time I thought geez I just need to get away something would happen to me. So I freaked out thinking I have four little kids to raise how am I gonna do that on my own. Huge storm of anxiety hit me and most likely I was feeling the effects of the illness that had hit me but it was just like a huge nervous breakdown came over me only I could still function and boom my POTS was born out of that wild combo of illness/ stress. That is my true story and I am not sure how many people I have admitted it to but I wonder how many else their illness came on during huge amount of crisis in their life. 

There fore one of my biggest focus is staying grounded. Living stress free to help myself and my condition. Sometimes I fantasize if I could totally eliminate all stress my body would heal.

Oh and my job huge stress. We had constant drama and crisis there so it was all a double whammy for me. They were always in financial crisis threatening to lay us off. I dealt with death and dying and crisis all day at work. The stress on my mind and body was enough to bring an elephant down and that is many people in this society live with. I look back and think how did I do it. I lived 24/7 in total exhaustion. 

Take care of yourself. Number one. Try not to worry too much. I know it is natural and only realistic to have concerns but along with figuring things out take some breaks from the worry and just be. Answers may come to you. 

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences. 

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3 hours ago, MomtoGiuliana said:

Welcome to the forum.  I am sorry you've been experiencing such disabling symptoms.  It does sound consistent with POTS.  It can take time to find the right meds to help you feel better.  It sounds like you are seeing a specialist who can help with this process.  There is not a one size fits all approach, however, most people feel better with increased fluid and salt intake.  Many feel better with IV saline as well.

Most people do improve over time, but patience is often needed.

Take care.

Thanks for your reply. My autonomic dysfunction specialist doesn't seem to think it's pots from the tilt table test. But my tilt table test was only like 5 mins and I've read on the internet where they take ones a lot longer and even give medicine or something. The tilt table did show my heart rate was dramatically different depending on my position. But my blood pressure was high the whole time. Yesterday when I got to the doctor my blood pressure was 115/85 sitting down. When I nearly hit the ground in Walgreens later that day, as soon as I got home I took my blood pressure and it was 150 something over 109 standing up. Laying down it dropped a few points. My heart rate dropped by about 50 beats. My blood pressure is all over the place and is never consistent. I guess time will tell on what's going on. Thanks again for your reply.

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3 hours ago, StayAtHomeMom said:

Welcome to your 30s. I had a similar thing happen. It is like I hit 30 and my body fell apart. Be patient it will get better. Try not to compare yourself to before you got sick. Take it one day at a time. And there are multiple types of medicines that can help. Personally I take metoprolol and midodrine to help me. There are other medication combos I have seen people use on here. Also try to listen to your body as much as possible. There is a lot of good advice on here as well :D

Does your heart skip beats?

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The defining feature of POTS is the change in HR from lying to standing.  Some POTS patients have low BP, some high, some experience a wide range of BP.  When I am in a flare my BP tends to be high.  Even so, I will feel faint/lightheaded.

Even for people with POTS they may not meet the strict definition of POTS every day or every moment.  It may be helpful to record your HR lying, sitting and standing a couple of times a day over a week or so and share that with your physician.

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There are multiple forms of dysautonomia.  The connecting factor is a malfunctioning autonomic nervous system, but the mechanisms that cause the symptoms differ.  Getting the diagnosis pinned down more precisely will take time, but it ought to help you find the correct treatment.  There are treatments, like your doctor said about that one medication, but they do not cure the problem.  Some good news: many people with POTS, for example, are able to regain some level of functioning, up to living a completely normal life.  You are not necessarily doomed to a life of disability.  Keep pursuing treatments and don't give up.

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Everything changes with this disease. I was having HR go from 85 to 130 BPM all day a few days ago. Now it is going from 70 BPM to 100, to 110, depending on how long I stand up. BP standing without meds has been like 130/106. It goes higher without meds. I feel faint a lot, like I might pass out, but I never do. I have passed out a few times as a teenager, not blacked out, but knees buckled and hit the bed after trying to stand up on a very hot day. I don't know exactly what I have yet as I have not been tested, but I'm glad I have not been passed out on the floor yet. I hope you get to the bottom of what's going on. Also, I pray that you feel better soon. I know what it's like to be limited in activity, but only from my bum leg. My leg only has about 4 good hours of standing/walking a day and then it starts to drag like a sack full of dirt. I have bad circulation in my leg. I sit all day with my leg elevated on the recliner to prevent pain flares. It hurts like heck after sitting with it down on the floor for too long. But it also starts hurting from being elevated too long. Hang in there. You're surrounded by a good group of friends in here. They have helped me out a lot. I don't freak out thinking heart attack every time I have high HR. I had some really bad palpitations yesterday upon standing and the other night for a few minutes, like my heart was flapping around inside my chest like a fish out of water. But I know mostly it's just more of an annoyance than it is a serious medical issue. 

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4 hours ago, Derek1987 said:

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences. 

He has an employer provided short term and long term disability plan from what I can gather. On those types of plans, a lot of them are occupation only plans. It means that if a doctor feels that you cannot return to your current occupation, you are awarded disability. It's not like trying to qualify for SSDI, which states that you have to be found unable to do any kind of work. If SSDI feels that you can no longer stand on your feet, but can sit down in an office and answer phones, you're not disabled. Even if you did not train for an office job, or have a degree. They will suggest you retrain and switch careers to accommodate your illness. It's much more complex and harder to qualify for SSDI than it is for long term disability insurance. 

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4 hours ago, Derek1987 said:

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences. 

Okay for me it was kind of a long process.
I was working full time which was 3 days a week every other weekend. So what happened basically was this all started in 2009 and I used up a lot of my vacation time either taking weeks off at a time or just sprinkling in vacation days to my regular work week at first til I just realized it wasn't working. I wasn't getting better. I could not handle the 8 hour shift.
So then I cut back to weekends and I think it was a 6 hour shift. I barely got through those but I was trying to hang onto my job because my hourly rate was really good for me and I didn't want to lose that. Then I dwindled down to PRN ( call in basis ) that was by the year 2010-2011 and it was horrible when they would call I was too sick to go. So finally I got the letter in the mail wishing me well telling me if I got better to come back and I would have a job but for now I was being taken off the schedule all together. I called in to make sure I wasn't fired or anything like that and she said no. Just no longer on the payroll for now.  It wasn't disciplinary or anything like that because she knew I was genuinely ill.
Well that all ended up being just what I needed to show that I tried a reduction of hours over time and I still could not perform my duties.
So as soon as I got that letter I filed. I was thinking you were supposed to wait a year of being unable to work but I had something like that. Close anyway.
So I did receive a check then with the remainder of my PTO hours. I was denied  disability twice by SSDI and then contacted a lawyer. I really did not have a POTS diagnosis yet and they used anxiety and anorexia as diagnosis. I also scored really poorly when I went to do the assessment with disability's chosen psychologist. 
So it did go to a hearing. I was able to do it local via a video conference. The attorney I hired was kind enough at the end of my hearing to ask if she could possibly send in a note to the judge because she said she felt like there were elements of my condition not captured in the hearing and the judge agreed. I did get my approval then and they did give me backpay back to the time my hours were reduced. So it was later when doctors were running tests that I got an official POTS diagnosis basically so insurance would cover the tests I was getting and the dysautonomia specialist said from everything I was describing it absolutely sounded like POTS. Due to the length of time I had it and the amount of deconditioning he saw in me he said he was going to go ahead and assume I did have POTS. 
I have had one full review since my disability was rewarded and just had another mini review late October and I have not heard anything back from the mini review yet but sadly I looked at the instructions after I mailed it and I did not follow them exactly. Maybe they get that frequently with disabled people I do not know..

I hope this helps you. I am sure you know that maybe you can get your doctor you see for dysautonomia to help verify your condition for them. I also see a neuropsychologist and report all my symptoms to her so I have her as a back up also. I guess it can be tough to prove you are still ill if you do not see a physician regularly and follow up related to your condition.

Edited by lieze
typo

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7 hours ago, Derek1987 said:

Does your heart skip beats?

My heart has always skipped a beat. About once every 3 years or so. Makes you take a deep breath. Sometimes cough. When my POTS presented I started skipping a beat at least once a month. I thought the skipping was a heart palpitation. And it is but I also found out anytime you feel your heart beat fast or slow it is a heart palpitation. And that happens daily without my meds. My metoperlol really takes care of that for me. 

My major symptom is an issue breathing (nothing wrong with my lungs) so the propranolol that is the usually go to medication made that worse so they started this cardiac specific beta blocker and it has done wonders for my HR and heart rhythm. 

My midodrine help the rest of my symptoms. 

7 hours ago, Derek1987 said:

Thanks for your reply. My autonomic dysfunction specialist doesn't seem to think it's pots from the tilt table test. But my tilt table test was only like 5 mins and I've read on the internet where they take ones a lot longer and even give medicine or something. The tilt table did show my heart rate was dramatically different depending on my position. But my blood pressure was high the whole time. Yesterday when I got to the doctor my blood pressure was 115/85 sitting down. When I nearly hit the ground in Walgreens later that day, as soon as I got home I took my blood pressure and it was 150 something over 109 standing up. Laying down it dropped a few points. My heart rate dropped by about 50 beats. My blood pressure is all over the place and is never consistent. I guess time will tell on what's going on. Thanks again for your reply.

You are supposed to be upright up to 45 minutes unless you faint. Injection of medication is individual. I had it twice and neither used anything injected. 

8 hours ago, Derek1987 said:

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences. 

I am currently considering applying. Right now I am working on getting everything I can diagnosised to help my case. I have an appt this month to get my ADD and OCD diagnosised to help them see the whole picture of what I deal with. I do currently work part time but if my boss wasn't so flexible I can't see me being able to work. I can text the morning of and not come in. No other job will offer that for me. 

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10 minutes ago, StayAtHomeMom said:

My heart has always skipped a beat. About once every 3 years or so. Makes you take a deep breath. Sometimes cough. When my POTS presented I started skipping a beat at least once a month. I thought the skipping was a heart palpitation. And it is but I also found out anytime you feel your heart beat fast or slow it is a heart palpitation. And that happens daily without my meds. My metoperlol really takes care of that for me. 

My major symptom is an issue breathing (nothing wrong with my lungs) so the propranolol that is the usually go to medication made that worse so they started this cardiac specific beta blocker and it has done wonders for my HR and heart rhythm. 

My midodrine help the rest of my symptoms. 

You are supposed to be upright up to 45 minutes unless you faint. Injection of medication is individual. I had it twice and neither used anything injected. 

I am currently considering applying. Right now I am working on getting everything I can diagnosised to help my case. I have an appt this month to get my ADD and OCD diagnosised to help them see the whole picture of what I deal with. I do currently work part time but if my boss wasn't so flexible I can't see me being able to work. I can text the morning of and not come in. No other job will offer that for me. 

If I was up for 45 minutes I'm pretty sure I would have fainted. I feel shortness of breath when standing for a couple minutes. I wonder why she didn't give me the full test. My wife said when I was in the standing position my hands were red and my face. and I would feel like I was having a mini hot flash or something. Not anywhere near what it was the first time I fainted. Not sure if that means anything. Tomorrow I'm starting my medicine the autonomic dysfunction specialist gave me. I tried it twice but it raised my blood pressure too high. I got some proper blood pressure meds from the doctor today to counter act that. So we will see what happens tomorrow. 

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4 hours ago, lieze said:

Okay for me it was kind of a long process.
I was working full time which was 3 days a week every other weekend. So what happened basically was this all started in 2009 and I used up a lot of my vacation time either taking weeks off at a time or just sprinkling in vacation days to my regular work week at first til I just realized it wasn't working. I wasn't getting better. I could not handle the 8 hour shift.
So then I cut back to weekends and I think it was a 6 hour shift. I barely got through those but I was trying to hang onto my job because my hourly rate was really good for me and I didn't want to lose that. Then I dwindled down to PRN ( call in basis ) that was by the year 2010-2011 and it was horrible when they would call I was too sick to go. So finally I got the letter in the mail wishing me well telling me if I got better to come back and I would have a job but for now I was being taken off the schedule all together. I called in to make sure I wasn't fired or anything like that and she said no. Just no longer on the payroll for now.  It wasn't disciplinary or anything like that because she knew I was genuinely ill.
Well that all ended up being just what I needed to show that I tried a reduction of hours over time and I still could not perform my duties.
So as soon as I got that letter I filed. I was thinking you were supposed to wait a year of being unable to work but I had something like that. Close anyway.
So I did receive a check then with the remainder of my PTO hours. I was denied  disability twice by SSDI and then contacted a lawyer. I really did not have a POTS diagnosis yet and they used anxiety and anorexia as diagnosis. I also scored really poorly when I went to do the assessment with disability's chosen psychologist. 
So it did go to a hearing. I was able to do it local via a video conference. The attorney I hired was kind enough at the end of my hearing to ask if she could possibly send in a note to the judge because she said she felt like there were elements of my condition not captured in the hearing and the judge agreed. I did get my approval then and they did give me backpay back to the time my hours were reduced. So it was later when doctors were running tests that I got an official POTS diagnosis basically so insurance would cover the tests I was getting and the dysautonomia specialist said from everything I was describing it absolutely sounded like POTS. Due to the length of time I had it and the amount of deconditioning he saw in me he said he was going to go ahead and assume I did have POTS. 
I have had one full review since my disability was rewarded and just had another mini review late October and I have not heard anything back from the mini review yet but sadly I looked at the instructions after I mailed it and I did not follow them exactly. Maybe they get that frequently with disabled people I do not know..

I hope this helps you. I am sure you know that maybe you can get your doctor you see for dysautonomia to help verify your condition for them. I also see a neuropsychologist and report all my symptoms to her so I have her as a back up also. I guess it can be tough to prove you are still ill if you do not see a physician regularly and follow up related to your condition.

I wonder why you need reviews for this condition. According to the internet and my specialist, there is no cure. It's been a long road for my wife and I. She finally was approved and we are waiting on the first check. It's been 3 weeks. Haven't received an award letter or anything yet. Drowning in debt. And my long term disability through my job is about to cut my pay in half. Sorry went off subject a bit there.

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Have you ever had a nerve conduction study done? Seems weird your specialist would try to reverse damage if it isn't actually damaged. 

As an FYI there is no cure. Only symptom management. BUT if you can find your underlying cause and treat that then your POTS may subside. POTS is not a disease of itself only a cluster of symptoms. That is why it is a syndrome. 

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1 hour ago, StayAtHomeMom said:

Have you ever had a nerve conduction study done? Seems weird your specialist would try to reverse damage if it isn't actually damaged. 

As an FYI there is no cure. Only symptom management. BUT if you can find your underlying cause and treat that then your POTS may subside. POTS is not a disease of itself only a cluster of symptoms. That is why it is a syndrome. 

I've never heard of a nerve conduction study. My specialist said my nervous system has been damaged from the tick illness and the medicine pyridostigmine br will reverse the damage. I don't trust any doctors. I always challenge their word with research. She also doesn't think I have POTS. She thinks it's more of my body won't stop producing adrenaline and my body gives out. That might also be an issue. It does sound like I have POTS though. When I stand, immediately my heart rate increases by around 50 BPM. She doesn't believe I have POTS because on the 10 minute or so tilt table test, my blood pressure remained high in all positions. She said she doesn't think I need compression socks or anything. But then she showed me a illustration of someone with autonomic dysfunction of a person standing up. The longer they stand, the less blood gets to the brain. Isn't that POTS? So I'm pretty confused.

 

This medicine she gave me combined with my blood pressure medicine might get my symptoms to look good, but how do I know blood is getting to my brain properly? I don't think I'll know until I try and live normal. As for now, I feel sick everyday. I get nauseated a lot but I haven't thrown up yet. I just know I don't feel well. Again, thanks for the responses to help me get through this. It's pretty terrifying not having control over your own body.

 

 

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@Derek1987 - you mentioned several times that this condition has no cure. That is correct - you will have it for life. But there are so many drugs that provide relief of symptoms that you can live with the disease. I have had POTS for 9 years and am in the care of a very competent autonomic specialist. He tried several meds on me, including pyridostigmine ( which you also take ). It did not help for me. I also have NCS which causes syncope. I have passed out or fallen down and had episodes as you describe too many times to count. I am today disabled on SSDI but no longer experience the syncope ( unless in a bad flare ). I take 12 meds every day, exercise, take rest periods and get IV fluids weekly. Today I can live a good life within my limitations. I think if you are not improving on one med than your specialist should try another one, that is what we did. It took 3 years of careful finetuning my "medication soup" until we came up with the right combo. Improvement takes time and is very frustrating - and you have to work hard at it. If you have questions about SSDI feel free to PM me. Best of luck - wishing you strength! 

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9 hours ago, Derek1987 said:

I've never heard of a nerve conduction study. My specialist said my nervous system has been damaged from the tick illness and the medicine pyridostigmine br will reverse the damage. I don't trust any doctors. I always challenge their word with research. She also doesn't think I have POTS. She thinks it's more of my body won't stop producing adrenaline and my body gives out. That might also be an issue. It does sound like I have POTS though. When I stand, immediately my heart rate increases by around 50 BPM. She doesn't believe I have POTS because on the 10 minute or so tilt table test, my blood pressure remained high in all positions. She said she doesn't think I need compression socks or anything. But then she showed me a illustration of someone with autonomic dysfunction of a person standing up. The longer they stand, the less blood gets to the brain. Isn't that POTS? So I'm pretty confused.

 

This medicine she gave me combined with my blood pressure medicine might get my symptoms to look good, but how do I know blood is getting to my brain properly? I don't think I'll know until I try and live normal. As for now, I feel sick everyday. I get nauseated a lot but I haven't thrown up yet. I just know I don't feel well. Again, thanks for the responses to help me get through this. It's pretty terrifying not having control over your own body.

 

 

A nerve conduction study is a slightly painful test where they run electrical current through your nerves to see if there is damage. I have heard it used to check for carpal tunnel syndrome and diabetic Neuropathy. My specialist did it all over to see if I had nerve damage as that can cause POTS. 

If your specialist thinks it is adrenaline causing your symptoms did she do the urine catacholmine test? Have you seen hyperPOTS symptoms? I have seen some types of tick-bourne illnesses can cause POTS but without a test confirming that I would be leary. 

When I first got sick they were diagnosing me with stuff based on symptoms instead of tests. Asthma, allergies, GERD... then give me the medications to try. I had a lot of bad reactions to them. So after my last hospital trip I refused medicine unless they could prove I had something before taking it. 

In my research it seems like BP can pretty much do what it wants depending on the type of POTS you have. The biggest thing is the HR change that sustains as you stand, plus some symptoms to go with it. People with hyperPOTS have BP that rises. Mine stays the same. And I have heard of people that theirs will drop. And it seems like doctors each have a differing opinion if that means you have POTS or not. 

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2 hours ago, StayAtHomeMom said:

A nerve conduction study is a slightly painful test where they run electrical current through your nerves to see if there is damage. I have heard it used to check for carpal tunnel syndrome and diabetic Neuropathy. My specialist did it all over to see if I had nerve damage as that can cause POTS. 

If your specialist thinks it is adrenaline causing your symptoms did she do the urine catacholmine test? Have you seen hyperPOTS symptoms? I have seen some types of tick-bourne illnesses can cause POTS but without a test confirming that I would be leary. 

When I first got sick they were diagnosing me with stuff based on symptoms instead of tests. Asthma, allergies, GERD... then give me the medications to try. I had a lot of bad reactions to them. So after my last hospital trip I refused medicine unless they could prove I had something before taking it. 

In my research it seems like BP can pretty much do what it wants depending on the type of POTS you have. The biggest thing is the HR change that sustains as you stand, plus some symptoms to go with it. People with hyperPOTS have BP that rises. Mine stays the same. And I have heard of people that theirs will drop. And it seems like doctors each have a differing opinion if that means you have POTS or not. 

I did a 24 hour urine test. I'm not sure if that's the same test you are referring to. I've never heard of hyperPOTS. The very first time I fainted I know my blood pressure dropped because it was still low when the paramedics got there. I was sitting upright.it was the worst of the 3. Going black and going deaf and unable to move. I was coming out of it when the paramedics got there but I was so weak and could barley move. In the ambulance laying down is when the paramedic said my blood pressure is coming back up.

 

 

The next 2 fainting spells, I layed down immediately as I felt it coming on. My blood pressure was high when the paramedics checked it the 2nd and 3rd time. I was laying down when they checked it. Actually the 2nd fainting spell I was already laying down. I was laying on my left side with my head propped up on my hand. I panicked and stood up then it seemed to get worse so I layed down. Then the fainting feeling went away. I still went to the hospital. Basically I don't know what's wrong with me lol.

As far as the tick born illness, I think she found that in my blood work . I just took mestinon now that I have the proper blood pressure medication to counter act the mestinon giving me higher blood pressure. I'm pretty nervous about taking medication. Reason being these doctors don't study drug interactions enough. My autonomic dysfunction specialist actually told me to keep taking a beta blocker with the med she is giving me. I'm thinking okay I don't want my heart going too slow. I consulted with my primary care doctor and she agreed and put me back on Lisinopril like I had taken in the past. I also wonder if Lisinopril can cause damage to the nervous system itself. I fainted for the first time 6 months after taking Lisinopril. Anxiety is quite exhausting worrying about everything.

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3 hours ago, Derek1987 said:

I did a 24 hour urine test. I'm not sure if that's the same test you are referring to. I've never heard of hyperPOTS. The very first time I fainted I know my blood pressure dropped because it was still low when the paramedics got there. I was sitting upright.it was the worst of the 3. Going black and going deaf and unable to move. I was coming out of it when the paramedics got there but I was so weak and could barley move. In the ambulance laying down is when the paramedic said my blood pressure is coming back up.

 

 

The next 2 fainting spells, I layed down immediately as I felt it coming on. My blood pressure was high when the paramedics checked it the 2nd and 3rd time. I was laying down when they checked it. Actually the 2nd fainting spell I was already laying down. I was laying on my left side with my head propped up on my hand. I panicked and stood up then it seemed to get worse so I layed down. Then the fainting feeling went away. I still went to the hospital. Basically I don't know what's wrong with me lol.

As far as the tick born illness, I think she found that in my blood work . I just took mestinon now that I have the proper blood pressure medication to counter act the mestinon giving me higher blood pressure. I'm pretty nervous about taking medication. Reason being these doctors don't study drug interactions enough. My autonomic dysfunction specialist actually told me to keep taking a beta blocker with the med she is giving me. I'm thinking okay I don't want my heart going too slow. I consulted with my primary care doctor and she agreed and put me back on Lisinopril like I had taken in the past. I also wonder if Lisinopril can cause damage to the nervous system itself. I fainted for the first time 6 months after taking Lisinopril. Anxiety is quite exhausting worrying about everything.

The 24 urine test could have been a urine catacholmine test or a sodium test. Maybe something else as well. 

I agree anxiety is exhausting. My Beta Blocker lowers my HR about an average of 20 points standing. Lowers my BP about 10 points. And my midodrine brings my BP back up to normal. Everytime I have had both medications in me and my BP checked it was normal. Sometimes it is just balancing the medications. My Beta-blocker helps my tachycardia and heart palpitations, where the midodrine helps with the massive fatigue that sets in when I am upright. I imagine it helps with blood pooling as well. Not sure. All I know it is a vasoconstrictor that causes my scalp to tingle (it is a little weird side effect but I don't mind). 

Have they given anything for you to try for the dizziness?

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