What Were You Doing At The Moment You Pots Became Debilitating?

[Lemons2lemonade]

Yes mine has been like that too, jenglynn. I wonder why it does that? i.e. increase in severity during each flare and then gets better until it gets to the point where we all are now. Its like we are repairing ourselves each time, and then the damage gets to the point where we either can't repair it or, it takes years to repair... My first episode lasted 2 days and i thought i just had the flu--felt weird, kinda tired. The second one lasted 6 months and was more confusion oriented. The last one brought in the heart rate, near fainting, etc, and has been around for almost a year and a half now.

[jesse1919]

I got POTS literally overnight. I was 27. I went to a Superbowl party on Sun. and just felt like garbage Mon. morning. I didn't get up until after noon. I assumed it was a bug- everyone sharing food etc. But after a couple days I realized this was different... It's been almost 7 years.

[icesktr189]

Mine was overnight... pretty much 0 to 100 in 1 night. I did have symptoms all my life, but they were not disabling.

[IDreamInColor]

Symptoms since I was a teenager, but never had a diagnosis, but not debilitating until this past August, it came on with a vengeance. I had just taken a shower, and layed down on my bed for a sec to catch the weather report. After that I got up to take the towel off my head and was instantly extremely dizzy and felt funny all over, and my body began shaking uncontrollably. It scared me so bad hubby called for an ambulance and I went to the ER, where they kept me for 2 days and insisted I was just dehydrated, then sent home feeling worse than when I went in, I continued to worsen and became bed-ridden.

[McKenzie]

Hi!   I’m new to the forum.  Thank you for all of the info you share.  I have learned so much from all of you!  

I have been recently diagnosed with Neurocardiogenic Syncope NCS.  I am hypothryroid, but have a normal TSH.  I take compounded T3/T4. I’ve been taking nutritional supplements for years in an effort to find good health.   I’ve been fighting what I thought was adrenal burnout for 20 years or so.  

My debilitating symptoms began suddenly on July 2nd, 2011.   We had been out and about, had a great, active day.  When I laid down on the bed and my son and husband bumped it, my head spun and I got nauseous.  From then on, I was dealing with dizziness and nausea.  The migraines began gradually from that point.   Within 1-2 months, I was having migraines daily.  The Doctor diagnosed Benign Positional Vertigo, gave me something for the dizziness and referred me to a Balance Clinic.   I went to the Balance Clinic several times, did hearing testing and therapy that is supposed to help get the ears and brain back in sync.    My headache and nausea got so bad that I couldn’t work.   In desperation, I did an internet search for dizziness, nausea, and headache.   This led me to a blog where I found a link to Vision Specialists of Michigan.   I opened it and found a questionnaire to determine your tendency toward Vertical Heterophoria which I completed.   A Dr. from VS of M called me within 2 hours.  A normal score on the questionnaire is about 15, my score was 71.  I had been feeling so sick with no answers that I had planned to go to Mayo and see if I could get in to see a Dr. for my migraines.  Instead, we headed to Michigan and saw Dr. Debby.  With her help and new glasses with prisms, I’ve been able to get most of my headaches under control!  J  It was Dr. Debby that suggested that the other symptoms I was having could possibly be Dysautonomia.  She had another questionnaire with about 20 questions relating to Dysautonomia.   I answered yes to most of them.  Did you know it’s nearly impossible to get into a Dr. to get a diagnosis?  Mayo Clinic and Dr. Grubb’s offices all require that you send them your medical records and results of TTT before they’ll put you on their waiting list.   Bypassing my primary care physician, I located an EP Cardiologist that is in my Insurance Company’s Preferred Provider list.   They told me he could see me and do a TTT if necessary.  I was out cold at 31 minutes on my TTT.  Dr. prescribed Midodrine for me and sent me on my way.   Since I now have a diagnosis, (NCS), I went back to my PCP and he has been wonderful, learning what he can about Dysautonomia and working with me to find a solution to help ease my symptoms.  We’ve added a beta blocker now to see if that will help, (I haven’t noticed much difference yet).   What really seems to help is Gatorade.  I’m trying to get back to work, currently working ½ days to try and build up my strength.  Luckily, I have a sit-down job.  I can go lay down when I need to.  I can also go for a walk to get my blood pumping again.  The worst symptoms are fatigue and brain fog.  Sometimes I can barely hold my head up and I get to the point where I just can’t get a deep breath and get really nauseous.  I also still have dizziness that gets progressively worse the longer I’m up.   I think I’ve had this all of my life.  I keep having “light bulb” moments when I read things on the forum and realize that I’ve done these things for years!   I was really good at managing my symptoms until my stress level pushed me past my breaking point and caused this recent flare. My symptoms are mild compared to most of you, but they still interfere with normal life.   I’ve been reading up on LDN to see if that might help.  

 

[lexcyn]

I was kicked in the head by a soccer ball, and it brought everything to the forefront.

[vemee]

I was a paid firefighter and had problems with pots before but it became disabling during a fire. I could not breath, did not have the strength to move the hose forward toward the seat of the fire. I had to actually leave the floor. After that I had no confidence that my body would perform when I needed it. The final straw came when I was helping another fire station with some construction. It was a hot day and I was soaked from sweat, throwing up and heart skipping. Even though my job was just to fetch tools I was completely exhausted and knew if we caught a fire that night I wouldn't be able to hold up. I marked off work and that was the end of a 13 year career. The worst part was being told by several doctors that all I had was anxiety. It took a while to get a real diagnosis.

[anaphylaxing]

Was recovering from anaphylaxis on steroids etc trying to taper. Gorged on pizza then went to have a nap. Heart went insane felt like I was dying.

The second most debilitating time was after starting florinef

[songcanary]

Hi McKenzie and welcome to the forum! I'm hypothyroid with a normal TSH too. I take Armour. Did it take you awhile to find a doctor to diagnose that? I went through at least four of them before someone finally took me seriously.

I have been taking LDN for six months now and while it helps my fibromyalgia pain and does increase my energy levels, I have found that it hasn't changed my dysautonomia. But maybe it will for you; I hope so! Take care.

Sorry all, didn't mean to hijack.

[rubytuesday]

I had problems with motions sickness as a child but am now in my 5th decade of life. The syncopes began in Jan 2009 when I was at mass. As symptoms progressively/gradually worsened, it was not until this past spring when I was trying to ride my bike on a beautiful day that I knew I had to put it away (I loved biking outdoors). Then things really escalated over summer and spring to the point that I could not complete the simplist of housework even, or meal preparation, or carrying laundry from machine to hamper or bend down to pick something up. But when cardiac specialist explained things to me this Oct., he said this was the most debilitating summer for all his patients (all the days of 90 degrees and above and high humidity). Even tho I could do the re-conditioning/endurance building in physical therapy aquacciser treadmil this fall, I never regained my strength outside the water--these legs just pool (having EDS makes things worse).

[Troy]

I was on the dancefloor at a rave party when I got that awful pinching sensation in my heart muscle. It just worsened with every move until I found myself struggling to walk back to my car. I began taking baby steps inch by inch trying to get to my car thinking it was a matter of urgency to get there but at the rate I was moving it would take me hours. Thats when I decided to ask for help and explained to the people near me that I had chest pains and needed to get to my car and some nice people carried me to my car.

I got home and slept on it but then the next day I forgot about it and went to walk my dog and then suddenly got a massive tachycardia episode with chest pains. I literally sat in the middle of the street and then decided to crawl on all fours to the nearest house, it was funny walking in the same manner as my dog who was right beside me. When I got to the house I asked them if I could use their phone to ring my parents who came and picked me up from two streets away where I was.

The same symptoms continued everyday and any help I tried to get was misdiagnosed by doctors as being anxiety until one day I diagnosed myself by searching google and found out about POTS