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Dysautonomia or Something else?


Bailee
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Hello I just discovered your website. In 2015 I started fainting when I was 14. This continued until I had to use a wheelchair everywhere and I would faint everyday. I was originally diagnosed with Neuro cardiogentic syncope. Around the year 2020-2021 I had a period with no fainting , I started increasing my exercise and fixed my diet which seemed to be the solution to my dysautonomia . However recently July 13th I passed out for the first time in a year and a half. I was on vacation in a hot state, so I figured that’s what caused it. My fainting is back , I can’t stand for more than 10 minutes , bond to a wheelchair, fast heart rate when doing the simplest of things such as standing or going to the bathroom. I had to defer my second year of college while my twin attends university because my fainting has become so frequent. my new doctor suspects I either have pots or something else- meaning at 14 I was misdiagnosed with the wrong type of dysaytonomia. I was on medications such as midrodrine, Propranolol, any many of the medications used to treat dysautonomia. My family and I refer to whatever is causing my fatigue and frequent fainting spells a mystery disease. I truly don’t know if I have Pots/dysautonomia , some other illness, or second pots thats being caused my something else. A couple of my lab results came back abnormal such as low absolute neutrophils, 1.1 RNP antibodies, postive speckled ANA. I’m suspecting that there maybe an autoimmune component but when refered to rheumatology they ran no blood test, did a physical exam and sent me on my way. I’m going to Cleveland Clinic in November to rule out if I have dysautonomia because I don’t show any signs other then increase heart rate and low blood pressure. I’ve had at least 10 doctors visits in the past 2 months. I went to being completely normal on my way to college two months ago to being practical house bond now. Any advice on where to go from here should I push with rheumatology for further testing. I’m also seeing a neuromuscular doctor.
 

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Hello @Bailee - I tto started with sudden fainting, and intially was diagnosed with NCS after my first TTT. A year later i went to see an autonomic specialist who did blood work and diagnosed me with hyperadrenergic POTS. That was 10 years ago. When i started with fainting ( which later progressed to autonomic seizures ) I also started to have generalized joint pains. I was seen twice by rheumatology who did extensive blood tests and said I should take steroids. However, my autonomic specialist is involved in studies about POTS being an autoinflammatory ( not autoimmune ) condition in certain cases, and he started me on hydroxychloroquin. He said it should help both my joints AND my POTS, and it did. I would concentrate on seeing an autonomic specialist, but know that they usually have  along waiting list. For the fainting, are you increasing salt and fluid intake and are you wearing compression stockings?

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@BaileeOutside of the same suggestions Pistol mentioned. You may want to have your care team take a good look at any meds you are taking. Sometimes the side affects can aggravate symptoms. My daughter just did this with her provider (they have a specialist that does just this) and they were able to get her off a number of drugs and make changes to some of the other ones (she is feeling much better and has not gotten light headed since) she has fibromyalgia and chronic pain.

I did the same with my care team and they figured out the offending drugs. I still have a ways to go but we are on the right track.  

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Hi @Bailee  I'm so sorry to hear that you are struggling with a return of symptoms - apart from going on holidays did anything else change for you round this time?  Covid? Another virus?  My POTS became much worse after having EBV/glandular fever at university - quite often a mild virus can trigger a return of symptoms if you have had dysautonomia in the past.  I'm assuming you are female (apologies if I'm wrong!) - I also started with POTS symptoms at 12 and would get them for a few days every month - my doctors and I thought my problems were gynae in nature but it was my heavy periods reducing the amount of blood in circulation that was causing me to faint.  I now have a Mirena coil which helps control my periods reducing problems with lack of blood flow.    Could this be an issue for you?

Are you hypermobile (double jointed)?   After having POTS for around 25 years I was diagnosed with hypermobile Ehler Danlos Syndrome - this is a common reason to have secondary POTS as veins in hEDS patients are abnormally stretchy, causing blood to pool in extremities.  There is no blood test that can diagnose it and although a family history of EDS is common it is not necessary.   By the time I was diagnosed I had seen about 15 different doctors for seemingly unrelated issues, all of which are now explained by my faulty connective tissue - not one of them suggested EDS as a possible diagnosis.

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Just wanted to update everyone, on what’s happened in the past couple days? Hello I am Bailee Ray 19. I am a twin . I’ve been passing out quite frequently since the age of 14. My twin does not have any symptoms related to what’s going on with me. Yesterday I had an EMG appointment with autonomic sympathetic skin response Parasympathetic Cardiovagal function which was normal. The EMG showed no evidence of autonomic dysfunction, large fiber peripheral neuropathy ,right/lower extremity mononeuropathy, or right cervical radioculopathy. I am following up with a neuromuscular doctor as recommended with my neurologist who is unsure  what my diagnosis is. I go to Cleveland Clinic to determine if this is dysautonomia/pots/or something else? Hopefully the QSART test , tilt table, and skin biopsy will give me an answer. I’m trying to be  patient but it’s hard because as of right now my quality of life is being effected seeing as I can barely stand for 10 minutes and I’m constantly lightheaded with fatigue/brain fog. My hands and feet are constantly freezing and cold also.If anyone has any advice on what direction to take I would appreciate it and I appreciate everyone who has replied. I am currently doing the Levine program 20 minutes on my bike 3-4 times a week which leaves me very fatigue after. Which confuses me because before I passed out in July I was running 2 miles a day and now I can barely walk without getting lightheaded. Increased salt/salt tablets-compression socks-and drinking between 100oz-120oz of water a day.

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Hello @Bailee - two things: when you have cold hands and feet it is most likely due to sympathetic overcompensation - meaning too much adrenaline ( it constricts the blood vessels ). I have hyperadrenergic POTS, as I mentioned before, and that is caused by an overactive sympathetic NS. Have they drawn neurotransmitters? They can do them while they are performing the TTT. BTW - the TTT often is the most telling test in dysautonomia. 

The second thing I would like to mention is that if the exercise ( like 20 minutes on the bike ) sounds like it is too much if it makes you fatigued. It is very important for us to exercise, but with POTS you have to make sure you are doing the RIGHT exercises, and not too much of it. Anything that takes energy from you is bad, so you might have tone down the bike riding time. I have a rowing machine and am lucky of I can do 30 reps 3 x a week during a good week! Even if you used to run 2 miles - your body is obviously not able to perform this at this time. So, please be gentle with yourself until they have figured out what is going on. I neglected to listen to my body when I first got sick and this made everything much, much worse. 

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Does anyone get really shakey and heart racing during simple workouts. Trying to workout when I can but I get shakey like I have an adrenaline rush or drank to much caffeine but I haven’t. It’s weird? Not even doing a vigorous exercise just simple pedaling on recumbent bike.

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51 minutes ago, Bailee said:

Does anyone get really shakey and heart racing during simple workouts.

@Bailee - that usually means you are trying to do too much too fast. Regardless what you were able to do before you got dysautonomia - you have a different normal now. You need to start really slow and on the lowest resistance setting. I use a rowing machine and when I am at my best I can only do about 25 reps at once on setting 2 out of 8. If you feel like you get an adrenaline rush you need to stop earlier. It may be better to do a different exercise, like walking or stretching. Also - once you are controlled on medication ( most people start on beta blockers if fluids, salt and compression dont work, but that depends on the type of POTS you have ) your HR might hold up a bit better and you can maybe exercise more targeted. In general if the exercise USES up energy it is not the right exercise for you. Many people in the beginning do simply leg strengthening and abdominal exercises while lying down, since leg and abdonimla muscles help the most with orthostatsis. 

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currently can’t walk at all right now. Physically  I can but it makes the fainting spells and symptoms worse or I become overly exhausted within walking a short distance.  I’m using a wheelchair to get to and from places.I’ve done this in the past due to chronic injuries I’ve had because of the fainting. Two concussions and a broken collar bone. If I stand and/or walk for less than 10-15 minutes on a good day which isn’t often. Last time I stood for 8 minutes and fainted badly injuring my neck and shoulder. I instantly get lightheaded and pre-syncope. That’s why recumbent bike is my last resort. It’s been a couple hours and the shaking only occurs when I stand up.  It hasn’t stopped. I notice this also happens when I climb the stairs (with assistance) to go to my bathtub. My legs always shake going down the stairs to take my bath (that’s where my bathroom is located). I wonder is the has something to do with the nervous system or orthostatic tremors? As far as overworking myself I don’t think that was the cause the workout was less than 10 minutes and my heart rate was under 120 the whole time. I checked my blood sugar it was fine so was blood pressure. I also had electrolytes before my workout. Drinking about 100oz-120oz of water a day. Taking salt tablets three times a day . Not on any medication right now because I don’t have a confirmed diagnosis yet.  I visit a neuromuscular doctor on Monday. 

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9 hours ago, Bailee said:

 

Does anyone get really shakey and heart racing during simple workouts. Trying to workout when I can but I get shakey like I have an adrenaline rush or drank to much caffeine but I haven’t. It’s weird? Not even doing a vigorous exercise just simple pedaling on recumbent bike.

Absolutely. Especially afterward. Workouts that I'd been doing for a long time were destroying me, even after cutting them in half and then in thirds. I would start shaking/trembling and couldn't recover from simpler and simpler things (or at least I though they were). It was pretty terrifying and involved several ER trips in the beginning when I couldn't figure out what was going on. 

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12 hours ago, Bailee said:

Not on any medication right now

This is probably a good thing while your Dr is trying to figure out what is going on. This way the Dr does not have to consider an offending drug in the troubleshooting mix.

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@Bailee - since you are highly symptomatic and unstable - are you seeing an autonomic specialist at all? Or at least a physician familiar with POTS and trained in treating it?

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Hi Bailee, sorry to hear that you started reexperiencing symptoms of dysautonomia after a long time.  I think this is not unusual.  I have had it for 20 years.  I’m not a doctor but from what I know there is a lot of overlap between POTS/OH and NCS and other forms of dysautonomia.  Many people like me have both POTS and OH.   And symptoms can be all over the place.  They can also disappear and reappear after a long period
 

You may have some other condition as well, but if you have symptoms of some form of dysautonomia  - low blood pressure, fainting or high heart rate - it almost certainly  connects to your original diagnosis.  The good thing is that the treatments have evolved over the years and you can find information on treatments on the DINET page.  
 

Testing can be helpful but for someone like me the only tests that came back abnormal were blood pressure, heart rate and tilt table. I had extensive tests of every kind imaginable and nothing ever showed up.  What helped me was to get on the right medication and to become more active.

I wish you the best of luck in feeling better.

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Hi everyone just wanted to give another update with some good news! I saw another neuromuscular doctor and she wanted to do a poor mans tilt table. I layer down 5 minutes, sat on the bed for 5 minutes this transition made me lightheaded, and finally I was supposed to stand for 5 minutes but within the first 2 minutes I fainted. My father was there to catch me thankfully. However my blood pressure spiked and my heart rate went to 142. I’ve been doing a lot of research trying to find the answers and I came across Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.Overactivity of the sympathetic nervous system. I go to Cleveland clinic and the neuromuscular doctor advised that is my best bet. She also advised I have additional cardio testing so that we don’t miss anything. 

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Hello @Bailee - yes, that sounds like HPOTS. I have it, and for me my HR and BP easily jump up to 180 and 160/110 and I either pass out or have autonomic seizures. ( These are caused bu the sympathetic NS causing all of the blood vessels to constrict so fast that there is no circulation to the brain ). 

There are several articles under the Information Resources tab, and here is a brief Overview: 

The most important thing to consider in HPOTS is that the commonly prescribed POTS meds like Florinef and Midodrine do not work. Treatment often is geared towards dilating the vessels, whereas in "regular" POTS meds are given to constrict vessels. I had great success with Carvelidol ( beta blocker ) and Diltiazem ( calcium channel blocker ). I also get IV fluids several times a week and am pretty well controlled now. 

Increasing fluids is still recommended, however check with your cardiologist about salt intake with high BP. The most important thing that helped me to control my symptoms is careful regulation of my daily activities. I have found that if I push myself I pay for it with increased symptoms and days in bed or the wheel chair. I am disabled, so I have the ability to do what my body allows me. During good spells I am quite active ( no strenuous exercise though, just a short walk and a few reps on the rowing machine ), and when I am not doing so good I may mostly stay in bed and just do exercises lying down. I do make myself get up every 30 minutes though, that helps a lot to maintain orthostasis. I know you are not really able to stand up right now but hopefully with proper medication that will improve. 

Consider yourself lucky - you have the first stepping stone towards finding the right treatment! To properly diagnose HPOTS usually norepinephrine levels are drawn after 30 minutes of rest and then again after 30 minutes of being upright ( in your case it probably would have to be earlier ). If the NE ( adrenaline ) level after being active is above 600 it is considered HPOTS. But you probably get away with a diagnosis just based on your BP, HR and symptoms. 

7 hours ago, Bailee said:

She also advised I have additional cardio testing so that we don’t miss anything. 

Don't be alermed if many of the cardio-tests come back normal. Remember - POTS only affects the ANS, so structurally our hearts and bodies are well ( unless you have unrelated health problems in addition to HPOTS ). For many of us even autonomic testing comes back completely normal! That is one reason we so often get misdiagnosed. 

I hope you will find good doctors at Cleveland and hope that successful treatment is right around the corner! Good Luck!

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16 hours ago, Bailee said:

I saw another neuromuscular doctor and she wanted to do a poor mans tilt table. I layer down 5 minutes

Bailee be thankful that you drew a doctor that knew enough to do the poor mans tilt table test. I do one each time i see my providers in Madison so they can assess how i am doing.

This may take a bit to find what works for you but you can make a diff as to how you feel. Give your Dad a big hug for catching you.

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