Justpots

As nmorgan said I also have terrible symptoms whilst laying and cannot get to sleep. This includes muscle tremors, high heart rate and chest pain. I have had two tilt table tests and both have confirmed POTS. I think I have the hyper type but have not been told that by Dr just by reading everyones posts - mine seems like hyperadrenergic. My BP had also always been ok. Good luck, I really hope you get some answers soon. Never give up!

The chest pain is my worst symptom. The pain was so bad today as I was driving my kids to the dentist that I was wondering what to do and whether to go to the hospital. Tonight it is bad too! I have never fainted so I can only imagine how bad that is for many POTS sufferers. It is going to be one of those tossing and turning nights trying to ease it. I take a hot water bottle to bed, helps sometimes!

Hi Angela, YES! My vision has seemed blurry and out of focus for months now. I went away on a cruise in March and day after we returned a black floater appeared in my vision in one eye. My optometrist sent me to an opthomologist and he was very thorough and said I have a floater and the jelly substance in my eye is melting quicker than usual for my age (38). My BP has been fluctuating a lot lately and after a high BP day I wake up with badly bloodshot eyes. Well mainly the eye with the floater. I went back to Optometrist this week with a very red eye and he thinks it is related to the POTS and mainly BP fluctuation. Also discovered I am sensitive to any eye drops except plain saline with no preservatives etc. Have the muscle twitches mainly in my legs and feet and sometimes hands. I notice this most at night when in bed and cannot get to sleep. Jump in my sleep a lot too. A new one for me this week. My feet are always freezing cold but this week my heel was numb. NO feeling in it at all when I walked, this lasted for two days with no change. Today it is gone. I have lots of aches and pains in legs, especially after sitting for a long time. Try not to worry, although I do and have lots of questions for my cardio in September. Not holding my breath for any answers! Good luck and take care, Justine.

Hi Nikki, Yes, you are definately not alone. My GP has never believed that I have anything but anxiety. When my first symptom was the tachycardia and chest pain - he told me it was anxiety. After heart rate monitors and numerous tests at cardologists he said "see anxiety". After TWO positive Tilt Table Tests he said, "So what, now you have a label for this but it is still all your emotions controlling this." I have fluctuating BP and pulse about 90 or higher at all times. Whenever I mention POTS he rolls his eyes. Why I am still going there? I guess because it is close and I am currently trying to find a new GP. I have also had eye problems. Vision blurry, permanent black floater in my left eye and whenever my BP is up, I get really bloodshot eyes. My Opthomolgist believes the POTS is contributing to my ongoing eye issues. Don't worry I have never fainted either but still have so many other disabling symptoms. Terrible headaches which come and go - all MRI's normal. Good luck with your upcoming tests and in the search for an understanding, helpful Dr. I am on the case in Sydney here too! Justine.

POTS has taken away some of my confidence. Takes away freedom and spontaneous outings. Playing outdoor games with my children. Recently bowling and ice skating with them too... My ability to be the type of police officer I loved being. Confidence in Dr's... Going for a run The list could go on... POTS does not take away love, hope, family and treasured memories. Each year I go on a small manageable holiday with my family and look forward to the next one. It gives me something to look forward to. Dared a 10 night cruise this year and survived without too many issues. I fully understand the next to vent... Keep smiling

Hi again Susan, Yes the beta blocker did drop my BP at first but it did seem to settle down after a few weeks. It never dropped it low enough that I fainted but having said that I have never fainted with POTS. Do you have fainting episodes? My BP is still quite low at night and in the morning but raises up to normal during the day (on better days)! Made it through another day at work today and no off for a few days, which is a much needed rest. I understand your concern with the children, especially as yours are so young and do not understand. My daughter is 9 and son 8, so they are starting to understand when I am not well. They say "Oh that POTS thing again."!!! Take Care, Justine.

Hi Susan, I have been suffering from POTS for 2.5 years now. Diagnosed in September 2008 and second diagnosis (after the first was questioned) in October 2009. Over this time I have had many weird symptoms. I have experienced adrenaline rush feelings and a wired, hard to settle down feeling, especially at night when laying in bed. I get little tremors and my leg jumps slightly in bed (not all the time but comes and goes). I have had the electric feeling, like sharp electric shocks all over, down my arms and into my hands. Hate it, it comes on quickly and only last seconds but such a scary feeling when it happens. I have sharp pains in my head. (Had three scans over this time, two CT and an MRI), all came back normal. I tried to explain the electric shock feeling and tremors I get to the Dr. He sent me for a nerve conduction study which came back normal. After many ECG's, Stress tests and heart eco, Tilt Test confirmed POTS. It was noted that I had an 'Extraordinarily high output of adrenaline'. I am not surprised that is how I feel. I have also had a few bad weeks. BP really bad. Last week at work 160/98 and stayed up most of the day. Went to GP who first said "I doubt it was that high". Then he took it three times and admitted it was very high. I then spent the next day doing 24hr urine test for pheo(Adrenal tumor)...normal again! I then had three days of low blood pressure 90/60 and even 70/40 at night. So after a week away from work, I dared to go today. I have to get up at 4.40am to arrive at 6am. Felt okay until the afternoon, got very dizzy and bad headache all of a sudden. Got home and had low BP! One of my most troublesome symptoms is chest pain. Also get that hot feeling and have chest pain most days. I started taking beta blocker atenolol 50mg in February 2009 (one in the morning). This seems to help with the palpations in the first half of the day but usually about 90 bpm in the evening. I have taken this for some time now and tolerate it quite well but not sure how much it is doing??? I tried Florinef in March this year, did not agree and have severe headaches for weeks (hence another brain scan). I felt terrible with the headaches and blamed the Florinef so stopped taking it. Not sure now as I still get the headaches, whether the Florinef caused it. Now confused what to take...do not want to have the high BP...I don't know, wish I had an answer for you about the meds! My Cardiologist has told me to take Norvasc but worried that will drop the BP too much? Lastly, my eyesight is suffering, blurry vision and a black eye floater (in my right eye) that has not gone awayI after four months. I am sure there are other symptoms I have failed to mention. I usually handle all of this quite well but have had terrible mood swings and have been so angry lately with the confusion of all this. Trying to stay positive and concentrate on the good things...my family and two beautiful children. I hope this finds you having a better day and answers some of your questions. At the very least, hope you feel less alone and you are not going mad...these crazy symptoms do exist! Take Care, Justine.