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dannyg

POTS flare ups - How often do you get them and what do you do ?

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I was just wondering. How often do some of you get "Flare Ups" where you cant move and your shaking. I guess thats how I can describe them. Do they happen less frequent as time goes by ? And what do you do ? Do you just lay back and "ride them out"? 

Just wondering because since I had been diagnosed about 2 months ago, I had 5 bad "episodes", drove myself to the emergency room, and basically sat in a wheelchair shaking and feeling horrible for 4 or 5 hours until they took me in a room and really did nothing. I csme out of it myself. Last time they gave me an IV, put me in a room for 4 days and all I did was lay in thr bed. 

Wondering if I should "ride them out at home" or what to do. I think when they happen, I panic more, try and grab what I can, drive to the emergency room, and tbat might be making it worse raising my Pulse and BP even higher.

What would you do ?

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I used to get these episodes ( and worse ) regularly when I was still working bc/ I had no choice but to push myself to do more than I should. I still get them but rarely. In my case even meds could not get rid of them completely but becoming disabled and limiting my activity to whatever my abilities are on any given day has improved them greatly. If I am in a triggered flare ( colds, surgeries etc ) then I need bedrest and IV fluids followed by slow reconditioning. 

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11 hours ago, dannyg said:

I was just wondering. How often do some of you get "Flare Ups" where you cant move and your shaking. I guess thats how I can describe them. Do they happen less frequent as time goes by ? And what do you do ? Do you just lay back and "ride them out"? 

Just wondering because since I had been diagnosed about 2 months ago, I had 5 bad "episodes", drove myself to the emergency room, and basically sat in a wheelchair shaking and feeling horrible for 4 or 5 hours until they took me in a room and really did nothing. I csme out of it myself. Last time they gave me an IV, put me in a room for 4 days and all I did was lay in thr bed

Wondering if I should "ride them out at home" or what to do. I think when they happen, I panic more, try and grab what I can, drive to the emergency room, and tbat might be making it worse raising my Pulse and BP even higher.

What would you do ?

They did nothing for you except bill you which is all they could do for you. Unless they knock you out you are going to have to ride out your symptoms. I have your 'bad' episodes dozens of times a day, I would celebrate having five in two months. Stop panicing over what you can handle on your own---you've already proved it to yourself--you're just working yourself up into a frenzy adding to your own stress. It is self feeding. Award yourself for getting through your bad attacks and use that skill set to get control back of your life, don't give in to self-crippling worry. 

 

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Thank you. I do get scared. I need to learn my limits and not stress myself out and panic. Like you mentioned, all I have is bills, and 3 trips to the hospital, and 2 times admitted once for 3 days and once for 4 days, just laying there no IV, wasting time. By the time they get me in a room after being moved around, almost passing out trying to stand to take dumb xrays, driving to the hospital, all that stress actually makes it worse for me.

Everyone here is the best. Thank you everyone. Better than any doctors I have seen so far..

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I have episodes daily , I know I do too much very often but I need to work, I'm self employed and by the weekends I feel wiped out partially in the winter.

Meditation and deep breathing exercises have helped me . I use cool packs on my neck ( my first sign of an episode is getting hot ) and drink a glass of cold water in one go.This usually stops me fainting and then I have to try and just get on with the numerous symptons that follow. I have learnt that sitting around for hours makes it all worse , so gentle moving around for 15 min's every hour helps me on my days off.

This may not help you as we are all different but you need to experiment with different solutions. Learning your limits takes time and even then each day  can be different so its not fool proof and i often misjudge it. Getting upset will only make it worse and keeping a positive attitude is important . Finding things you can do that you enjoy gives you a sense of achievement and can be relaxing , reading ,sewing ,painting etc and my favorite spending time with hubby just taking it easy .

Deep breaths and think happy thoughts ☺

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Check your BP/HR next time it happens.  Sitting/standing and if BP is low with high HR I agree, slam a big glass of fluids (electrolytes) sit for awhile and then see how you feel.  You need to know what is causing the attack so you can respond appropriately and get back in control.  Are you wearing compression stockings? Check out the book The Dysautonomia Project, it has great information for patients/family and Drs not familiar with dysautonomia.  I know it’s scary at first but you will learn what your triggers are and how to deal with all it if you document everything you do.  What you eat and when, exercise, medications taken and when, fluid intake, orthostatic BP/HR readings morning, noon, night and whenever you experience symptoms.  I did that for 3.5 years after I was diagnosed.  The information was very helpful even when symptoms change unpredictably.  Information is power!

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They dont have me on any meds yet. They had me on that Floro something. That shot my BP up way to much and I ended up in the hospital. The 4 days I was in there nurses couldnt figure it out. 1 time I stand up, BP goes down. Next time they check standing up, BP goes up,  next time it dont change. Im all over the place. Sometimes Pulse goes to 105 and stays there and comes down, sometimes it shoots up to 135. Thats why he took me off the meds. 

I do have to learn my limits. I havent been going much just going from room to room then sitting down. I get ears ringing and head gets stuffy anything over a minute of standing. Then I have to lay down for a while. 

I need excercise but Im affraid to "push it" to much. These attacks seem to happen mainly at night when Im laying in bed wanting to go to sleep about 10pm.

I been affraid to check my BP and Pulse, the mubers scare me but Im going to have to start doing it and keep a record of it so I can try and get a better idea of whats going on so as usual, I can explain it to the doctor.

No compression socks yet. I will have to order some and get them.

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I have both POTS and VVS before midodrine I use to have very large fluctuations in both BP and HR , nowadays the fluctuations are much smaller, I am use to them now but understand how scary they can be. 

I think pd8 suggestion to keep a log of reading and symptoms is a really good idea,  I did and it was really helpful to see patterns .

Strengthening the core and leg muscles is important just start slowly and build up gradually. 

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When I first got sick and didn't know what was going on I would end up doing the same thing. One hospital trip they gave me Xanax thinking it was anxiety. After that I found if I considered the hospital I would take a half of one and it made it easier to manage my symptoms so I wouldn't end up having to go. Kept my ER trips down to 3 in a year and a half. 

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I'm going to have to start paying attention to see if there are any "triggers" that cause them. Today I started out weak and not feeling good, but pushed myself and did a lot of walking and keeping busy today. I'm wore out. Head hurting, ears ringing, but It turned out to be a decent day.

Going to get a Oximeter soon also. My BP is all over but never really that "extreme". It ranges from 95/70 to maybe 150/100 at times. I get light headed, and the head ache and ears ringing, and I can work through that. The Pulse is what I need to watch so I know when I have to sit down.

Smoking .... Im going to experiment with. One thing I noticed when I was when Im in the hospital and cant smoke, after 1 day, I walked around with the monitor on me and my Pulse was pretty regular 90% of the time. I could stand still, it would go up to about 115, then come down and pretty much stay  between 90 to 105 for about 5 minutes. I didnt try and push it more than 5 minutes. At home, smoking, it goes to 135 and up all the time. Going to see if not smoking helps the Pulse. 

 And .... going to keep records of BP and Pulse during the day sitting and standing to see exactly whats going on. 

 

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7 hours ago, dannyg said:

Today I started out weak and not feeling good, but pushed myself and did a lot of walking and keeping busy today. I'm wore out. Head hurting, ears ringing, but It turned out to be a decent day.

This right there is what you need to avoid. When you feel bad you have to STOP, DROP and REST!!!! If you push through you will cause your POTS to get much worse. If you wake up feeling weak then your body is telling you to take it easy. We CAN get some control over our symptoms but we need to RESPOND to the signals our bodies give us. And - as you already realized - smoking causes vasoconstriction and therefore can affect your POTS ( and as you know it is very bad for your health in general ). Your BP is too high and the fact that is drops to low is common in certain types of POTS ( in my case it happens to me and I have hyperadrenergic POTS ). I know you have mentioned in previous posts that you do not take any meds currently but I think that BP like yours should be treated. The symptoms you describe are indicative of hypertension which can be dangerous if it goes untreated - that is why they call it the " silent killer "

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I have to talk to the doctor about that.  He dont want to give me something to lower my BP because sleeping and laying in the hospital bed it drops to about 95/70. He gave me Metroprol 1 day, then have me that Floro pill that raises my BP. He based it on my having a low BP laying in bed. His theory is "raise BP that lowers Pulse".  To me, I can control Pulse right away by sitting down. Taking a pill to raise my BP I cant control and that put me in the hospital last time and triggered an attack.

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10 hours ago, dannyg said:

I'm going to have to start paying attention to see if there are any "triggers" that cause them. Today I started out weak and not feeling good, but pushed myself and did a lot of walking and keeping busy today. I'm wore out. Head hurting, ears ringing, but It turned out to be a decent day.

Going to get a Oximeter soon also. My BP is all over but never really that "extreme". It ranges from 95/70 to maybe 150/100 at times. I get light headed, and the head ache and ears ringing, and I can work through that. The Pulse is what I need to watch so I know when I have to sit down.

Smoking .... Im going to experiment with. One thing I noticed when I was when Im in the hospital and cant smoke, after 1 day, I walked around with the monitor on me and my Pulse was pretty regular 90% of the time. I could stand still, it would go up to about 115, then come down and pretty much stay  between 90 to 105 for about 5 minutes. I didnt try and push it more than 5 minutes. At home, smoking, it goes to 135 and up all the time. Going to see if not smoking helps the Pulse. 

 And .... going to keep records of BP and Pulse during the day sitting and standing to see exactly whats going on. 

 

Smoking seems to help some people, and makes others worse. It takes at least 2 hours for nicotine to leave your system, and good luck with your experiment. 

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