Survey for POTS members

[dannyg]

Was wondering ....

How long have you had POTS ?

Has the symptoms got better since you 1st got POTS as time went by ?

How much are you able to do ? (Drive, stand, walk, shop, get out and about) ?

What are your Pulze and BP readings ?

 

I been stuck at home. Can get around maybe 2 minutes standing or walking. Sitting, my legs get heavy and have to lay down after about 1/2 hour. Makes it hard to get to appointments even sitting in a car and then office. BP is all over. 145/95 to 103/72. Pulse laying 85, standing 110 high as 150. I get pressure in my head and ears ringing standing to long. Some days 10 minutes 1 time, some days 1 minute. Light headed when standing. 

Was everyone worse or better and at least get around a little more as time went by from when they 1st got POTS ?

Thank You

 

 

[Stark]

1. I've had POTS for only 4 months 

2. Some. I get fewer chest pains and I don't get such extreme heart palpitations (probably from increasing salt and water), but I continue to get more and more weird symptoms over time 

3. I can't drive at the moment because my neck is too stiff (unclear why) . I can stand or walk for about 10 minutes before I feel the need to sit down. I can do very short shopping trips or visit with friends as long as we're just sitting around. 

4. Pulse is about 55 when laying down, 65-70 when sitting up, when I stand up it jumps to about 80 and then by 5 minute is around 105. I have seen it as high as 130s if I stand or walk too long. Blood pressure varies wildly, often around 110/70 but I've also seen 145/85

I'm pretty new to POTS so my data is probably not that useful to you 

 

 

[StayAtHomeMom]

I have had my POTS diagnosed for 2 years (3 since I got sick). 

My symptoms are a lot better. When I first got sick the symptoms were overwhelming. Just going to my youngest son's football games were unbelievably hard. Now I function sort of normal. It is a lot slower paced life but I can do normal things if I plan for them. 

Cleaning is hard for me. I can shop but it is tiring. I work part time doing office work. Showers are exhausting. But other than the things that make me tired I do OK. Every Saturday I go to my friend's house to game with my buddies and I walk there (it is across my apartment complex). I can drive easily around my city. Longer trips are a little harder but I can do it. 

Without meds: HR is 80s, 90s, 120s. 120/80. With meds: 70s, 80s, 100s. 120/80 (if I take both beta blocker and midodrine)

I have always had high HR so I suspect I have had POTS since I was a teenager. My oldest son has signs and symptoms. Just waiting for him to see my specialist to confirm. 

[MeganMN]

How long have you had POTS ?

Diagnosed in November of last year, but had an episode 6 years ago that went away on its own.

Has the symptoms got better since you 1st got POTS as time went by ?

Unfortunately, at the moment, I feel that my symptoms have gotten worse.  Initially, I was occasionally dizzy, occasionally tachycardic, and then at the beginning of November, I passed out.  Since then, I have spiraled downhill and fight constant dizziness, fatigue, irritability, nausea, palpitations, etc.  If I take the Beta Blocker, the dizziness gets worse.  If I do not take it, all the other symptoms get worse.  Ick. 

How much are you able to do ? (Drive, stand, walk, shop, get out and about) ?

I guess I just do what I need to do because I have no choice.  I work part-time, I take care of three little kids, I shop, clean the house, and generally take care of business.  I feel like crap most of the time and feel like I might fall over at any moment, and try to rest as much as I can when I am home, but.......

What are your Pulze and BP readings ?

Before medication, I was at rest in the 70's to 80's with a BP generally around 110/80 and standing was in the 120's to 150's with a BP around 130/80.  After medication, I run resting in the 60's with occasional drops into the 40-50's and a BP about the same as before.  Standing is usually in the 90's with BP about the same.

 

[TCP]

How long have you had POTS ?

I think signs of autonomic dysfunction came on after the Epstein Barr Virus back in 1984. I was wrongly diagnosed with ME/CFS 8 years later. Symptoms remained there and changed little until 2007 and then POTS came on with a vengeance along with Small Fibre Neuropathy (now linked to Ehlers-Danlos that I didn't know I had).

Has the symptoms got better since you 1st got POTS as time went by? 

They've changed and I've got used to them. I am also on Nebivolol now and my HR is lower. I think it helps. The problems with pain, digestive issues, and allergies are the most problematic. 

 

How much are you able to do? (Drive, stand, walk, shop, get out and about) ?

I can walk short distances. I mostly sit with my legs elevated. I don't drive anyway but go out mainly to hospital appointments. I also have Mast Cell issues and pituitary problems and I am on hormone replacement (hydrocostisone, thyroxine and HRT).  

 

What are your Pulse and BP readings?

They vary but HR is lower now on meds. 

 

 

 

[WinterSown]

How long have you had POTS ?

At least four years, diagnosed two years ago. I also have NCS and OI. 

Has the symptoms got better since you 1st got POTS as time went by ?

No. But my ability to manage them and reduce their effect on my life has gotten better.

How much are you able to do ? (Drive, stand, walk, shop, get out and about) ?

I drive to a few appointments or the market around the corner but other than that everything is delivered. We do travel by car for vacations nowadays and make frequent stops for walking.

What are your Pulze and BP readings ?

70/40 100 when it's a drop attack, 110/90 110 when I need to go lay down. When I am dizzy numbers are all over the place up or down.

 

[Pistol]

1) I started with POTS symptoms ( including syncope and hypertension ) 9 years ago. No known trigger. I have hyperadrenergic POTS and NCS. 

2) Most symptoms have improved with medication but extreme limitations in daily living remain necessary. 

3) Mostly housebound, do not drive due to syncope/ seizures, wheel chair for transport, cannot do shopping or activities other than doctor appointments for the most part, walking no more than 200 feet. Can do mild house work, limited in cooking or other activities that require standing. Become bed bound if overdoing things. Great improvement since receiving weekly IV fluids. 

4) Since receiving weekly infusions BP and HR are mostly within normal limits. Prior to IV fluids BP between 100/60 - 150/100. HR 55 - 100 on medication. 

[jklass44]

I was diagnosed with hyperPOTS almost a year ago, but I’ve suffered from symptoms for about 7years. 

Some symptoms have gotten better due to life style changes and medications. Other symptoms - like GI issues - have not gotten better (but no worse either).

What I am able to do varies from week to week. Sometimes I am able to go grocery shopping, go to the bank, and have coffee with a friend all in one day, but other days I am housebound. Standing for long periods of time is still an issue for me though due to muscle weakness  

HR before meds would go up to 200 at times, but now on medication it’s generally between 80-120. BP is mainly controlled now but I still get occasional spikes.

 

[bunny]

How long have you had POTS ?

Probably 25 years, but dx'd 15 years ago.  Also have NCS and OI as well. 

Has the symptoms got better since you 1st got POTS as time went by ?

Yes, but there are other health issues involved which have improved, thus helping my situation a bit.  That said, I still tire easily, am dizzy quite often, and still faint. 

How much are you able to do ? (Drive, stand, walk, shop, get out and about) ?

Overall, I don't feel all that limited, but I try to keep a positive attitude and am thankful for how much function I DO have and what I CAN do rather than what I'm not able to.  I've learned to be flexible and reschedule things all the time.  It's very dependent upon my body. There's good days & bad days. 

If I'm tired and dizzy, I'm taking a quick nap before I even think about getting in the car.   I can walk on flat terrain for incredible distances, BUT when I stop I'm spent. Walking on any sort of terrain kills me.  Humidity kills me.  Standing still is a big no-no for me.   Some days I'm fine for shopping & such.  Then there are other times my SO's thrown me in a wheelchair to go shopping, much to my embarrassment.  

What are your Pulse and BP readings ?

These have varied over time.  Past year or so:  Resting: 99/56 p54.  Sick (colds ) :  105/60, p100.  Standing: pulse goes >120.  Exercise: variable, but the biggest problem I have is that when I stop exercising my pulse can go from 120 to 65 in ~5 seconds which isn't comfortable. 

[Guest ScottS]

How long have you had POTS ?

First time I passed out? 1970. I was 13. I had no idea why or what was going on. (And had no idea for years and years after.) I was officially diagnosed with POTS in 1998. Up until then my frequent bouts with fatigue, dizziness upon waking, occasional disorientation, regular (sometimes whole body) unexplained aches and pains, vision issues, gut motility issues, etc. and etc. were "just things I have to deal with".

Have the symptoms lessened (have things improved) since you were diagnosed ?

Diet changes, paying constant attention to my hydration and electrolyte levels, wearing compression leggings/shorts/socks (especially when exercising or doing more labor intensive work/activities) have all helped. I've also done yoga and YQi (and exercised regularly) since age 15. I have a (Shaolin Kempo) black belt (achieved through hard work, sheer will and stubbornness). It's important for people with POTS/OI and etc. to strengthen both their core musculature and the musculature in their upper thighs. (Increased muscle mass in the core and upper thighs helps limit blood pooling in the lower legs.)

How much are you able to do ? (Drive, stand, walk, shop, get out and about) ?

I have an established routine that (mostly) works most of the time. I get up and drink 32 ounces of water (while sitting on the edge of the bed). Once I feel steady I make my way to the shower for a 15-20 minute sit down (I can't stand in a hot shower for longer than half a minute or so), letting the warm (but, again, never hot) water wash away the morning brain fog. I then make a quart or so of herbal tea (4 parts lemongrass 1 part lavender is a favorite) and also mix up a quart of salt water (1/4 teaspoon salt). I'll drink both over the next hour or two. I then do my morning chores and exercise (daily yoga/riding my indoor exercise bike). I'm self employed and work out of a workshop attached to my house. Throughout the day I pay (rigid) attention to how long I've been on my feet at any given time. When I feel dizzy (which occurs much more frequently in the AM and late afternoon/early evening) I have several yoga and yoga type poses and positions that help ease things. (Standing with legs crossed/folding over with legs crossed. Deep seated yoga squats. "Sink The Boat" pose. "Rock The Cradle" movements.) I NEVER lie down during the day - it does me no good. I have poor tolerance of variations in temperature. I can tolerate some dry heat but heat combined with humidity and/or cold can ruin me. I have to guard against excess stimulation (noise/bright lights) and can't do many commonplace fun activities (such as going to the movies, visiting museums, even eating out). I still have the occasional bad time/bad day (or days). It is what it is.

What are your Pulse and BP readings ?

Both my pulse and blood pressure are well within the normal range most of the time. If something triggers an episode all bets are off. When I had my second tilt table test my pulse hit 148 just moments after they tipped me up the last 5 or so degrees. I then passed out and soon as they lowered me back down my pulse dropped to 42. Needless to say I can't ride rollercoasters.