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Hello,
I just joined and saw there was a fairly active group here dedicated to dysautonomia and POTS.
This has been a nearly 3 year long battle for me with my current symptoms, but I have had dysautonomia-like symptoms for most of my life (gastrointestinal problems, fatigue, OI, brain fog).
Those symptoms have followed me throughout my life and flared up 3 years ago. Over the winter of 2011/2012, I felt tired and like my heart would race randomly throughout the day. I was having trouble with coursework and focussing on my job. I was diagnosed with mild (inappropriate) sinus tachycardia (about 120 bpm during an episode) but was told it was nothing to worry about. It seemed to clear up by the summer.
From December 2012 to March 2013, I had yet another flare up. I felt ill and fatigued for 4 months. I was told I had CFS. It resolved on its own, but I had to spend 4 months sleeping 16 hours a day and I missed out on many opportunities.
Over the summer I again had another flare up. It started with severe gastrointestinal symptoms. I then started to feel dizzy and extremely fatigued. Within 3 days of my symptoms starting, I had the first of what I call my "episodes". My arms and legs tingled, I couldn't stand up, and I felt like my heart was beating uncontrollably fast. I lost my sight as well multiple times during the episode. I honestly thought I was going to die. I went straight to the hospital and was admitted for a tachy-brady like syndrome, hypovolemia, low BP and severe orthostatic intolerance. My heart rate swung from the 30s to the 160s and my blood pressure dropped drastically on standing. In the hospital had the same episodes, but also shook uncontrollably and my limbs turned very blue.
This again resolved, with a 3 week hospital stay and bedrest.
I had thought it was an isolated incident until just recently. At the end of February I had the first of many episodes. I was again admitted to the hospital for three weeks. The difference this time is that I did not have bradycardia or low blood pressure all the time. My blood pressure
drops often, but actually will become hypertensive as well.
I was only 2 weeks ago told I likely have POTS/OI. It's currently unclear whether it is secondary, but we believe it is.
I agree that POTS is definitely an element in what is going on.
I really am struggling though, since many of my symptoms occur when I am just lying down. I would like to know if anyone has any avenues or ideas or support for this kind of thing. I feel really alone and lost. I don't know what I should ask my doctor to investigate or how to deal with the symptoms until I can see an autonomic specialist and start treatment.
My mum and I have tossed ideas back and forth....mast cell disorder, catecholamine disorder, pheochromocytoma, various genetic disorders.
Nothing seems to add up completely.
My symptoms are currently:
-Dizziness with vertigo (feels like the room is 'breathing')
-Fatigue
-Temperature fluctuations
-Episodes lying down (paraesthesia in face, arms, legs, torso; severe dizziness; tachycardia from 110 - 150; blood pressure fluctuations (from 90/60s to 150/90s); feeling of doom; vertigo (occasionally); short of breath; palpitations)
-Tachycardia (120 to 190 standing) and OI (low as 81/50 standing),
-Tachycardia lying/sitting w/o episodes
-'Episodes' occurring upon standing
-Various gastro issues (nausea, diarrhoea, constipation, bloating)
-Abdominal pain
-Excessive urination (with lots of salt in it!)
-Electrolyte imbalances
-Hypovolemia (I get significantly hypovolemic in 3 days or less, originally it was under 24 hours until I needed IV fluids)
-Reynaud's/blue feet and hands
-Tremors/shaking
-Urge to faint
-Extreme fatigue and brain fog
I have had a normal MRI and EMG, EKG shows nothing serious (electrolyte imbalance and sinus tachycardia), no arrhythmia other than the tachycardia.
Sorry for the novel!!!!
I would just like to know if this sounds like a dysautonomia/POTS to anyone.....or if anyone else has had a similar experience....support would be awesome. This has thrown me for a loop. I am fighting back but it's VERY difficult.
Thanks!
EDIT: Forgot to add!
I have been on Florinef and salt tablets with little result. I get hypovolemic more slowly (3 days versus under 24 hours), but it has not affected my other symptoms.
I just joined and saw there was a fairly active group here dedicated to dysautonomia and POTS.
This has been a nearly 3 year long battle for me with my current symptoms, but I have had dysautonomia-like symptoms for most of my life (gastrointestinal problems, fatigue, OI, brain fog).
Those symptoms have followed me throughout my life and flared up 3 years ago. Over the winter of 2011/2012, I felt tired and like my heart would race randomly throughout the day. I was having trouble with coursework and focussing on my job. I was diagnosed with mild (inappropriate) sinus tachycardia (about 120 bpm during an episode) but was told it was nothing to worry about. It seemed to clear up by the summer.
From December 2012 to March 2013, I had yet another flare up. I felt ill and fatigued for 4 months. I was told I had CFS. It resolved on its own, but I had to spend 4 months sleeping 16 hours a day and I missed out on many opportunities.
Over the summer I again had another flare up. It started with severe gastrointestinal symptoms. I then started to feel dizzy and extremely fatigued. Within 3 days of my symptoms starting, I had the first of what I call my "episodes". My arms and legs tingled, I couldn't stand up, and I felt like my heart was beating uncontrollably fast. I lost my sight as well multiple times during the episode. I honestly thought I was going to die. I went straight to the hospital and was admitted for a tachy-brady like syndrome, hypovolemia, low BP and severe orthostatic intolerance. My heart rate swung from the 30s to the 160s and my blood pressure dropped drastically on standing. In the hospital had the same episodes, but also shook uncontrollably and my limbs turned very blue.
This again resolved, with a 3 week hospital stay and bedrest.
I had thought it was an isolated incident until just recently. At the end of February I had the first of many episodes. I was again admitted to the hospital for three weeks. The difference this time is that I did not have bradycardia or low blood pressure all the time. My blood pressure
drops often, but actually will become hypertensive as well.
I was only 2 weeks ago told I likely have POTS/OI. It's currently unclear whether it is secondary, but we believe it is.
I agree that POTS is definitely an element in what is going on.
I really am struggling though, since many of my symptoms occur when I am just lying down. I would like to know if anyone has any avenues or ideas or support for this kind of thing. I feel really alone and lost. I don't know what I should ask my doctor to investigate or how to deal with the symptoms until I can see an autonomic specialist and start treatment.
My mum and I have tossed ideas back and forth....mast cell disorder, catecholamine disorder, pheochromocytoma, various genetic disorders.
Nothing seems to add up completely.
My symptoms are currently:
-Dizziness with vertigo (feels like the room is 'breathing')
-Fatigue
-Temperature fluctuations
-Episodes lying down (paraesthesia in face, arms, legs, torso; severe dizziness; tachycardia from 110 - 150; blood pressure fluctuations (from 90/60s to 150/90s); feeling of doom; vertigo (occasionally); short of breath; palpitations)
-Tachycardia (120 to 190 standing) and OI (low as 81/50 standing),
-Tachycardia lying/sitting w/o episodes
-'Episodes' occurring upon standing
-Various gastro issues (nausea, diarrhoea, constipation, bloating)
-Abdominal pain
-Excessive urination (with lots of salt in it!)
-Electrolyte imbalances
-Hypovolemia (I get significantly hypovolemic in 3 days or less, originally it was under 24 hours until I needed IV fluids)
-Reynaud's/blue feet and hands
-Tremors/shaking
-Urge to faint
-Extreme fatigue and brain fog
I have had a normal MRI and EMG, EKG shows nothing serious (electrolyte imbalance and sinus tachycardia), no arrhythmia other than the tachycardia.
Sorry for the novel!!!!
I would just like to know if this sounds like a dysautonomia/POTS to anyone.....or if anyone else has had a similar experience....support would be awesome. This has thrown me for a loop. I am fighting back but it's VERY difficult.
Thanks!
EDIT: Forgot to add!
I have been on Florinef and salt tablets with little result. I get hypovolemic more slowly (3 days versus under 24 hours), but it has not affected my other symptoms.
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