MrsAccashian Posted March 24, 2015 Report Share Posted March 24, 2015 Fatigue, pain. periphal neuropathy (feet, legs, hands, arms, trunk and face). Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 25, 2015 Report Share Posted March 25, 2015 Fatigue, pain. periphal neuropathy (feet, legs, hands, arms, trunk and face).Hi Nene,I do have (small fiber) peripheral neuropathy in my legs, confirmed by skin biopsies.May I ask you - which kind of symptoms do you experience from peripheral neuropathy in hands/arms, trunk and face...? And how did you get your re diagnosis for these parts of the body?Best wishes!! Quote Link to comment Share on other sites More sharing options...
Claired Posted April 2, 2015 Report Share Posted April 2, 2015 Definetly nausea for me. If I could get that to go away I could probably go back to school...puppylove, I know this was posted ages ago, but if you're still having problems with nausea, have you tried Sea Bands? Quote Link to comment Share on other sites More sharing options...
Afpayne Posted April 3, 2015 Report Share Posted April 3, 2015 the BP and cardiovascular issues are my worst. we've got the horrible tachycardia and palpitations treated with a hefty beta-blocker. But now i'm left with what seems like reasonable bp when laying down that becomes the wonder that is the BP rollercoaster when I stand up and move about. On excellent days (I HAD 2 in a row this WEEK!!! YAY!!!!!) I can go all day long and my bp, heart rate, and blood pooling issues are in check with just my beta-clocker, compression socks, diet, and more gaterade than most professional athletes drink in a day. Bad days (I've had no truly horrible days this week, again that's an OMG YAY) i'm relagated to the couch or bed if I can't make it to the couch safely. We started me on Florinef yesterday and my lightheadedness has come back in a big way. Hopefully as I continue the florinef that'll go away. Quote Link to comment Share on other sites More sharing options...
Snowtite Posted April 23, 2015 Report Share Posted April 23, 2015 The symptom that has effectively taken me out of my life has been the fainting/near syncope. I have not been able to make it longer than 2 weeks without an episode in over a year.Don't drive,work or go anywhere alone. The tachy feeling and fatigue are close seconds . Wow it is amazing to me still how individual symptoms can vary and what we can learn to live with! Quote Link to comment Share on other sites More sharing options...
needafix Posted April 23, 2015 Report Share Posted April 23, 2015 Hello everyone, mine is passing out. Never know when it will happen. I felt weak so I took a pill and the next thing I knew I was in the ambulance. Later I was told I had passed out with my hand still in the running water. Quote Link to comment Share on other sites More sharing options...
pooter18 Posted April 23, 2015 Report Share Posted April 23, 2015 wish i could just pick one but i have them all everyday ..but right now having terrible abdominal problems and having to have surgery first of may due to no motility in my large intestine due to dysautonomia so probably that right now..we can't just have one or two symptoms to deal with we have to have about 30 or more to deal with and you never know what tomorow will bring you..hope everyone is as well as can be.. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 23, 2015 Report Share Posted April 23, 2015 Equal parts of Tachycardia and Migraines Quote Link to comment Share on other sites More sharing options...
blueskies Posted April 24, 2015 Report Share Posted April 24, 2015 Yes, the migraines are giving me a bit of a hiding too.Migraine and Erythromelalgia (which is supposed to be a separate health problem from POTS but I've found a few people with POTS that have Erythromelalgia as well).blue Quote Link to comment Share on other sites More sharing options...
peregrine Posted April 24, 2015 Report Share Posted April 24, 2015 Blue, just read your comment in my email. One possibility re: cutting down on meds is that the doctors are concerned about rebound headaches, which are not uncommon with chronic pain medication (you can read about them on wikipedia). This might explain their concern, rather than being concerned about you overusing opiates for Bad Reasons or something like that. (Regardless, it ***** a ton, and I am super-sorry to hear that!) Quote Link to comment Share on other sites More sharing options...
blueskies Posted April 29, 2015 Report Share Posted April 29, 2015 thanks Peregrine,They aren't concerned about rebound migraine. I have bought this up with them. Some years ago I stopped all meds for migraine for 3 months because I had read about rebound headache. It was something I did on my own. The pain was very bad most days and at the end of 3 months I had the same pain pattern as I did at the beginning. I told my neurologist that I had stopped all pain medication for migraine and he told me not to do so again. He was concerned about the pain pathways.But thank you for your concern,blue Quote Link to comment Share on other sites More sharing options...
db2504 Posted April 29, 2015 Report Share Posted April 29, 2015 My daughter complains of fatigue, dizziness, and shaking the most. Although she has the majority of all the symptoms associated with this syndrome on a daily basis. Quote Link to comment Share on other sites More sharing options...
AngieP Posted June 29, 2015 Report Share Posted June 29, 2015 Chest pain followed closely by nausea, weakness and anxiety. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted August 4, 2015 Report Share Posted August 4, 2015 *Usually* my worst symptom is tachycardia, but at the moment that's actually not bad, right now my worst symptoms is INSOMNIA !I HAVE BEEN AWAKE FOR 24+ HRS AND TRYING NOT TO FREAK OUT Quote Link to comment Share on other sites More sharing options...
SeattlePotsy Posted August 7, 2015 Report Share Posted August 7, 2015 Non-epileptic seizures, tremors, dystonia like symptoms Quote Link to comment Share on other sites More sharing options...
SeattlePotsy Posted August 7, 2015 Report Share Posted August 7, 2015 non-epileptic seizures, tremor, dystonia like symptoms Quote Link to comment Share on other sites More sharing options...
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