Aa
What helps?!
I have had a horrible flare up of my POTS and have hardly left my house in a month because it has been so bad. I feel like I start to see some improvement but then it just gets horrible again. What do you do when you have a flare up to help get back to "normal" POTS symptoms?
Hi and thanks for posting : ) Forgive me bc I am new here but are you a POTS patient? Are you the person who started this site? You seem to know so much!
I have had symptoms of dysautonomia since I was about 11. I have form of adrenal insufficiency as well called late onset, Non-Classica CAH (congenital adrenal hyperplasia). They both started at the same time so I assume they are related in my case. Howeverm after I got mono at age 28 the dysautonomia became severe but it wasn't diagnosed until a week or so ago, I am now 42! I am still at the very beginning of really getting evaluated and treated for this, although I have had been debilitated with it for many years now...had a bad crash last April for many months, then was finally getting more functional in late fall, and then crashed again right around New Years.
I really can't answer many of your questions yet bc I am so new to looking at this from a dysautonimic perspective - ie taking BP and pulse etc. on a regular basis...I can tell you that I have been homebound for a month and bedbound for many hours a day as well...extreme weakness, especially in legs, inability to sit up or stand for more than a few minutes at a time, dizziness, nausea, lighteheaded, racing heart sometimes when lying down doing nothing.
I am not on a special diet except I try to eat healthy, avoid sugar, avoid things I feel make me worse, and I have always had a high salt diet bc I crave it. I tried Florinef but I had a bad reaction to it, even in a tiny dose. Now I am on day 2 of Midodrine, very small dose to start. Not sure how long before I know if it is helping? I do not have a POTS specialist and am looking for one. There is one close by but he only treats pediatric and adolescents. I am thinking of calling him and asking if he'll consult with my internist on treatment. Also, I am going to see a cardiologist soon. I don't know if he will know anything about this? Do most cardiologists know about POTS? WHat about neurologists? I have a neurology appt for friday but I was thinking of cancelling bc someone I know with POTS went to this Dr. and she said he was not helpful at all. I was wondering if a CFS specialist would know anything about treating this.
Do you think it is important to get every test imaginable for dysautonomia before getting treated? My internist is willing to try treating it without all the tests they would do at Vanderbuilt, etc...like with the midodrine etc...
I was hospitalized in 2000 to figure out what was wrong with me. I was there for a week to no avail...no one diagnosed the dysautonomia...BUT the best part about the stay was that I got and IV saline/glucose and it helped me a lot. I have never heard of a Dr. prescribing it as a treatment though?
It is so scary when I am so weak (and I live alone), that I can't even get up to go to the bathroom sometimes when I need to, or make something to eat. I have to wait until I have the tiniest bit of strength and go quickly to the fridge to get something and back to the couch immediately (no cooking)...or to go quickly to the bathroom, feeling so lightheaded and shaky, worrying if I will pass out or if my legs will give out. I hate this illness, it is so challenging sometimes!
I don't know if anything I said to you would provide you with enough info to advise me at all. But thanks for listening and trying
Shari
I have had symptoms of dysautonomia since I was about 11. I have form of adrenal insufficiency as well called late onset, Non-Classica CAH (congenital adrenal hyperplasia). They both started at the same time so I assume they are related in my case. Howeverm after I got mono at age 28 the dysautonomia became severe but it wasn't diagnosed until a week or so ago, I am now 42! I am still at the very beginning of really getting evaluated and treated for this, although I have had been debilitated with it for many years now...had a bad crash last April for many months, then was finally getting more functional in late fall, and then crashed again right around New Years.
I really can't answer many of your questions yet bc I am so new to looking at this from a dysautonimic perspective - ie taking BP and pulse etc. on a regular basis...I can tell you that I have been homebound for a month and bedbound for many hours a day as well...extreme weakness, especially in legs, inability to sit up or stand for more than a few minutes at a time, dizziness, nausea, lighteheaded, racing heart sometimes when lying down doing nothing.
I am not on a special diet except I try to eat healthy, avoid sugar, avoid things I feel make me worse, and I have always had a high salt diet bc I crave it. I tried Florinef but I had a bad reaction to it, even in a tiny dose. Now I am on day 2 of Midodrine, very small dose to start. Not sure how long before I know if it is helping? I do not have a POTS specialist and am looking for one. There is one close by but he only treats pediatric and adolescents. I am thinking of calling him and asking if he'll consult with my internist on treatment. Also, I am going to see a cardiologist soon. I don't know if he will know anything about this? Do most cardiologists know about POTS? WHat about neurologists? I have a neurology appt for friday but I was thinking of cancelling bc someone I know with POTS went to this Dr. and she said he was not helpful at all. I was wondering if a CFS specialist would know anything about treating this.
Do you think it is important to get every test imaginable for dysautonomia before getting treated? My internist is willing to try treating it without all the tests they would do at Vanderbuilt, etc...like with the midodrine etc...
I was hospitalized in 2000 to figure out what was wrong with me. I was there for a week to no avail...no one diagnosed the dysautonomia...BUT the best part about the stay was that I got and IV saline/glucose and it helped me a lot. I have never heard of a Dr. prescribing it as a treatment though?
It is so scary when I am so weak (and I live alone), that I can't even get up to go to the bathroom sometimes when I need to, or make something to eat. I have to wait until I have the tiniest bit of strength and go quickly to the fridge to get something and back to the couch immediately (no cooking)...or to go quickly to the bathroom, feeling so lightheaded and shaky, worrying if I will pass out or if my legs will give out. I hate this illness, it is so challenging sometimes!
I don't know if anything I said to you would provide you with enough info to advise me at all. But thanks for listening and trying
Shari
Shari,
Feel free to answer the same insanely long battery of questions (sorry guys!!) and I'll try to trouble-shoot as best I'm able. Sorry you're both in a flare-up. I know how awful a "POTS-hole" can be. :-(
Heiferly.
Feel free to answer the same insanely long battery of questions (sorry guys!!) and I'll try to trouble-shoot as best I'm able. Sorry you're both in a flare-up. I know how awful a "POTS-hole" can be. :-(
Heiferly.
I apologize if you've told me more details about yourself before and I'm just forgetting now. Memory is not my forte.
Can you tell me more about your normal POTS vs how you are in this flare up? Do you have syncope (normally or now)? Presyncope (then or now)? Are you able to ambulate safely? What is your HR and BP lying down (then and now)? What was your resting sitting and standing BP (roughly) normally? What is your HR and BP when sitting and standing upright at 30 sec, 2 min, and 5 min (only do all of those if you can sit and/or stand for those lengths of time safely ... leave out anything that causes excessive symptoms but do tell what symptoms are preventing you from doing which measurements)?
What treatment regimen are you on? What medications do you take, if any (I see you say Florinef ... anything else)? What non-pharmaceutical treatments do you use (e.g., compression garments, special diet, etc.)? Have you spoken with your doctor about the flare up? Do you have a POTS specialist who treats your autonomic disorder specifically (such as an EP-cardio or neurologist), or is it managed by your family doctor (aka. GP, PCP)? Have you been to the emergency room during this flare up or a flare up some time during the past? If so, what treatment was administered/recommended and in your estimation to what degree was it effective?
Have you ever received IV normal saline or lactated ringers as a routine or emergency treatment for your POTS? If so, how many liters did you get in what amount of time (or at what frequency, if routinely) and did you feel that it was helpful?
Can you tell me more about your normal POTS vs how you are in this flare up? Do you have syncope (normally or now)? Presyncope (then or now)? Are you able to ambulate safely? What is your HR and BP lying down (then and now)? What was your resting sitting and standing BP (roughly) normally? What is your HR and BP when sitting and standing upright at 30 sec, 2 min, and 5 min (only do all of those if you can sit and/or stand for those lengths of time safely ... leave out anything that causes excessive symptoms but do tell what symptoms are preventing you from doing which measurements)?
What treatment regimen are you on? What medications do you take, if any (I see you say Florinef ... anything else)? What non-pharmaceutical treatments do you use (e.g., compression garments, special diet, etc.)? Have you spoken with your doctor about the flare up? Do you have a POTS specialist who treats your autonomic disorder specifically (such as an EP-cardio or neurologist), or is it managed by your family doctor (aka. GP, PCP)? Have you been to the emergency room during this flare up or a flare up some time during the past? If so, what treatment was administered/recommended and in your estimation to what degree was it effective?
Have you ever received IV normal saline or lactated ringers as a routine or emergency treatment for your POTS? If so, how many liters did you get in what amount of time (or at what frequency, if routinely) and did you feel that it was helpful?
Thanks for your comment. Sorry to hear you are going through the same thing! I feel like I have tried everything! I am exercising still, I'm eating right, drinking a ton, eating lots of salt.. I have had a horrible time with sleep right now though due to anxiety from POTS. I also increased my Florinef, but now my feet are swollen and red, so I might have to go back to the old dose. There has got to be something to get our bodies regulated again.
Jen, I am in the exact same boat as you...I hope someone has a good suggestion for us both!
Shari
Shari
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