BSmith85
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Everything posted by BSmith85
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Mottled Skin On Legs = Venous Pooling = Neuropathic Pots ?
BSmith85 replied to Goschi's topic in Dysautonomia Discussion
I'm guessing this is what I experience almost daily with my forearms. Constantly being asked if I spent the previous afternoon outside due to my "sunburned" appearance. -
Cant Breathe Upon Falling Asleep?! I Just Want To Sleep!!
BSmith85 replied to MomWithPots's topic in Dysautonomia Discussion
I've experienced this as well as the "BOOM" that many people report startles them from sleep. My beta blocker keeps my heart around 50 bpm during the day which is very much needed otherwise my resting pulse would be around 100 bpm. I feel like as soon as I lie down at night my pulse drops well below those 50bpm to around 30 or so which is a little scary to me. I think many times my body overreacts to this low HR and overcompensates thus I wake with tachy along with SOB. That's my theory at least. My most concerning sleep related issue as of late has been numbness in my limbs even when I am positioned well with no pressure on any portion of my arms or legs. -
Blood Oxygen Levels And Breathing Poll
BSmith85 replied to Lethargic Smiles's topic in Dysautonomia Discussion
Often feel as if I can not achieve a "full" breathe. I almost don't recognize this as abnormal since it's been an issue since I was 17 (29 now) but I faintly recall what it was like to take that full, satisfying inhale/exhale. Weird thing is it seems to be most severe at random times of rest & really not as prevalent during my most intense moments of work/exercise. -
I had an uncle who died suddenly in his 40's & have often wondered if it could have been possibly autonomic related. My biggest concern is the decade or so I went undiagnosed with MD's periodically attempting to control my extreme runs of high blood pressure. Now that I am fairly regulated I feel better about it but can only hope damage has not already occurred.
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Can Probiotics Cause Neurological Symptoms
BSmith85 replied to gertie's topic in Dysautonomia Discussion
Well now you have me wondering! Been taking probiotics as part of the Advocare 24 day challenge & low & behold. . . . Visual disturbances! -
Vibrating Pulsating Feeling In Random Parts Of Your Body
BSmith85 replied to Darlene's topic in Dysautonomia Discussion
Oh yea. It's almost like a phantom cell phone is attached to random parts of my body on extreme vibrate mode at times. When I've felt it in my chest & I've had a shirt pocket I've reached in to answer the call on numerous occasions! lol -
This is all interesting to me. I went through the battery of tests as a 17 year old before finally being properly diagnosed a decade later. Anyway one thing I vaguely recall is an IMA physician informing me I have an "extra" renal artery but he didn't seem concerned about it. Does anyone know if that could be an issue as well?
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I have taken clonidine but it was prescribed pre-diagnosis when the physicians were just attempting a quick fix for my elevated BP's. My diagnosing cardiologist advised I stop taking it due to the "rebound" effect it can have on BP. It always helped temporarily but I am glad I am on my beta blocker now.
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Daughter So Sick Despite Decent Blood Pressure
BSmith85 replied to JuneFlower's topic in Dysautonomia Discussion
June just curious about her "pulse pressure" or the correlation between the systolic & diastolic pressures. Someone started a thread recently & I have noticed that during my very worst episodes there is a narrow gap between my top/bottom numbers even if the pressures are not outside of "normal" ranges on their own. Just a thought it explained many of my issues when my pressure wasn't necessarily high. -
A beta blocker (atenolol) had worked well for me but I fear the dosage is losing it's effectiveness. Your theory makes sense so if you convince your MD to try it let me know how it works! I also take a benzo (klonopine) in a low dose prn at night when symptoms such as a pounding heart will not allow me to rest.
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Anyone Get Asthma Symptoms & Edema Due To Beta Blocker
BSmith85 replied to brethor9's topic in Dysautonomia Discussion
I am on the same dosage of atenolol (though I often cut in half) as well as Klonopin at night pretty much as needed. I haven't experienced the lower extremity swelling, pain, etc but I do have a persistent unproductive cough especially when lying down. -
Mine has been very narrow at times as well. Actually didn't know it was a symptom of POTS/Dysautonomia but I should have known. Makes me feel better because when I googled it and all I could find were life threatening acute cardiac conditions associated with narrow pulse pressures.
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I have had mild incidence but the most severe happened this past Friday. Was in my car traveling from one facility which I work to another and a song I am very familiar with came in the radio. I was singing along word for word when all of a sudden my words began to slur & seconds later the lyrics escaped me altogether. Took several minutes to regain my composure.
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Exercise - How Much Can You Tolerate?
BSmith85 replied to potsgirl's topic in Dysautonomia Discussion
I recently decided to dive in head first & have survived almost 3 months of crossfit which can be about as intense as exercise gets at times. Felt MISERABLE the first 6 weeks or so but kept pushing & it's to the point now that I think the overall health benefits outweighs the additional symptoms I am forced to deal with. My biggest issue now is trying to get my body to shut down enough to fall asleep at night. My biggest complaint would be that pounding heart feeling when lying down making sleep more difficult. -
I don't get the burning sensations so much but I do turn bright red at times particularly my forearms for no apparent reason. Am always getting the "are you sunburned" comments ?
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The Symptoms We Get From Pots
BSmith85 replied to Lemons2lemonade's topic in Dysautonomia Discussion
Like Arizona & JoAnn I also am hypertensive so I feel like my symptoms may be slightly different than most but I have experienced probably 75-80% of these symptoms at some point in time. -
Just took up crossfit a couple of months ago & thus far everything is going as well as could be expected. I am pretty certain that I feel much worse post workout than everyone else in the gym but I think I am gaining some overall wellness from the activity. My biggest concern is there is no telling just how high my BP climbs during workouts since I have orthostatic hypertension instead of the hypo most experience.
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Super Scary Flare...anyone Had Similar?
BSmith85 replied to cmreber's topic in Dysautonomia Discussion
I experienced a bit of a "remission" for a couple years following an ablation but when my symptoms came back full force it started while driving home from work on a couple different occasions. Didn't panic just had to pull over until I could regroup and continue on but I'm certain without my new meds I wouldn't be driving today. -
What Caused Your Pots/autonomic Issues - Poll
BSmith85 replied to andybonse's topic in Dysautonomia Discussion
No idea?? Had my first symptoms at 17 while at a basketball game & pretty much self diagnosed myself 10 years later. -
Is This Feeling 'dizziness' Or Is It Something Else?
BSmith85 replied to Alison's topic in Dysautonomia Discussion
Im the episodes I experience are what I would describe as "blurred vision" instead of "dizziness". Objects kinda distort & sway back & forth but my inner balance symptom remains in tact it's just a visual thing for me. -
Very Bad Night...anyone Experience This??
BSmith85 replied to MomWithPots's topic in Dysautonomia Discussion
Like E Soskis my issues are usually first thing in the a.m. after I have eaten even the lightest breakfast. It's something that comes & goes & fortunately haven't had the issue the last 2 months or so. Pray your symptoms get better as well. -
At What Age Were You Diagnosed With Dysautonomia?
BSmith85 replied to summer's topic in Dysautonomia Discussion
27 (will turn 29 tomorrow) had been experiencing symptoms since 17. Pretty much a self diagnosis after years of tests, tests & procedures. Noticed the drastic BP changes with positional changes was a recurring theme, searched online until I found something that met nearly all my symptoms & scheduled an appointment with a specialist 2 1/2 hrs from home who confirmed my suspicions. -
Curious If Any Of You Deal With This?
BSmith85 replied to Sleepbree's topic in Dysautonomia Discussion
I experience all the time & the only diagnosis I have is a general dysautonomia. It's often quite specific for example the ring & pinky finger on my left hand which almost seems like a nerve impingement but considering I sometimes experience it elsewhere including my feet & I am not in a compromised position to compress a nerve it's related to something with the dysautonomia I'm sure -
Thanks Issie! I too failed to mention that I am also in a "normal" BP range when lying. With my new Beta Blocker I am actually on the low side when supine. The new meds seem to be controlling the BP spikes quite well so I can deal with the remaining symptoms ok.