What helps?!

[jen201041]

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?

[Sharingme2]

Jen, I am in the exact same boat as you...I hope someone has a good suggestion for us both!

Shari

[jen201041]

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.

[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?

[Heiferly]

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.

[Sharingme2]

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

[Sharingme2]

One more thing...I live alone, but I do have some very supportive friends who will stay overnight if I need, and parents who come on weekends to help me with shopping and other things.  I didn't want it to sound like I had no support.  I have people who care about me, but it's just really rough when you live alone and this all happens, its scary.

Shari

[jen201041]

Thanks for your response. Sorry I didn't put in more details. I do not have syncope. I get near syncope quite a bit though. My "normal" POTS symptoms are extreme fatigue, weakness, headaches and GI problems. During this flare up, I've had horrible panic attacks that last for hours on end. I have had blood pooling in my feet, hands, nose, and ears. I have blisters on my toes from them getting so hot from the blood pooling in them. I have also had a lot of dizziness. I have been taking zebeta (bisoprolol) and florinef for my symptoms. I also have IST. My sitting bp and hr are usually 110/70 and 80 on the zebeta and when I stand my bp doesn't do anything and my hr goes up to 95 or 100. But even on the zebeta right now, my bp is 125/85 sitting and goes up when standing and my hr is still 80 sitting but around 125 standing. It increases to that almost instantly while standing and doesn't increase any more unless I stand for a long time. For non pharmacological treatment, I exercise daily, eat a lot of salt, drink a lot of water and do respirate (deep breathing). I have just recently gone to a cardio in town who knows about POTS (my main dr. for POTS is electrophysiologist and is about 5 hours away). The cardio I went to told me to take Celexa and changed my beta blocker to Propranolol. I had a hard time even going to see him because I had a horrible panic attack the whole time I was there. Since I've started the Celexa and Propranolol, I have such bad panic attacks, near syncope when standing and dizziness that I haven't been able to get out of bed. I'm supposed to call the cardio monday to let him know how I am doing on the meds. I know that some of those symptoms are supposed to go away in time with the Celexa, but it is frustrating to have things worse than they were before. I have not gone to the ER for this flare. I live in a small town and most of the dr's here do not understand POTS and tend to make things worse. So my main bad symptoms at the moment are the blood pooling, constant panic attacks, and dizziness. It has been so bad, I have bad brain fog when trying to talk to people or do anything too. Sorry this is so long! I'm just hoping someone will have an idea what is wrong and how I can get my body back into balance again!

[jen201041]

I read your post about your symptoms and I feel like we have a lot of symptoms in common! I'm having a horrible time with the dizziness and weakness right now. I even made a makeshift toilet for my bedroom so that I don't have to get up and walk all the way to the bathroom. Thankfully I still live with my parents so they help empty the "toilet" if I can't get up and they make food for me. But it is so frustrating to have to depend on people for everything and not to be able to do anything for yourself. I'd had bad dizziness for a while before i got diagnosed with POTS and the Florinef had really helped a lot with that, but my dr. tried to increase my florinef during this flare and I had bad swelling in my feet from it, and hypokalemia symptoms. It seems like everything I do to try to help only makes things worse right now.

[Heiferly]

I think I saw a PM from you in my inbox, so I'm going to go ahead and answer you by PM and try to hit all of your stuff at once.  Sorry for the delay; I'm having my own issues at the same time and I'm trying to deal with all of our crises at once, LOL.  Not to downplay your stuff, I mean, the reason I'm on here is because I see several of you folks who need help just as badly as I do right now so I'm trying to do my best to make my rounds.  But that's why I'm moving slower than normal.  If that makes sense.  Sorry.  :-p

[Heiferly]

Shari,

Ummm, no, I'm not exactly a POTS patient but that was my diagnosis at first ... now mostly my docs are just calling it Dysautonomia ... it's complicated, lol.  Basically I sort of bleed outside of the edges of what one would "normally" see in a POTS case, so it's tending away from that.  Not important to your stuff at any rate.  No, I didn't start this forum ... I suppose MedHelp did, technically.  One of the other co-CLs (Community Leaders) here (there are three of us in Dysautonomia ... we're the ones with purple flowers by our names ... you can find CLs in the various patient communities) was the first here in Dysautonomia:  Halbashes.  You may see her pop in and out now and then; she's a bit busy now because she just got her port (a type of semi-permanent IV line) put in for her IV treatments and is recuperating from that surgery and getting accustomed to her IV pump and all that.  

As to how I know however much I know, I read peer reviewed medical journal articles and medical textbooks out the yin-yang!  :-p  My educational background provided a firm basis in the "hard sciences" at two top-notch universities, so I guess I was well prepared to suddenly fall terribly ill at the age of 27 and go into early retirement.  So this is my hobby?  I volunteer here helping other patients access the info and support they need.  I hope I occasionally succeed.  :-D

On to YOU!  Yes, in my travails through studying random medical stuff, I have heard of CAH, actually.  Don't worry about the fludrocortisone, some people tolerate it and some don't and there are lots of other treatments out there.  The Midodrine may take a bit to see if it works for you, especially if you're starting with a small dose and your doc wants to play with the dose a bit to see if that can get to a good point for you; also, if you get side effects from that, one thing to note is that for most patients those will go away pretty quickly (about a week or two I think once you get to a given dose) so my advice is give it a chance even if you get something "weird" like the goosebumps from it unless it really REALLY drives you nuts.  Because Midodrine is one of the biggest helps for the biggest number of dysauto sufferers that I've seen (both anecdotally speaking and looking at the studies to back it up), and anecdotally speaking, some of the times it fails for people it seems like a part of it is not giving it a long enough shot or not "muscling" through side effects for at least a week or two to see if they go away.  I hope that doesn't sound awful.  I just think, personally, in the grand scheme of things that if something can improve your quality of life FOREVER, one crummy week or two is worth it.  At least to me, your mileage may vary, don't kill me if you suffer through a week of goosebumps for nothing, LOL.

If I haven't said this somewhere you've seen it already, do check out our list of treatments in our health pages (link in the top corner of the page by the little yellow icon ... it says "Health Pages" ... we share with all the other Neurology people so just look for Dysautonomia related topics in the list ... there's a link in there of Dysautonomia Treatments that talks about different meds and such ... not all are appropriate for POTS in particular but you can see that there's a lot out there so don't lose hope if your first efforts at trial and error with meds aren't successful).  Whoa, holy run-on sentences, Batman!!  Sorry, I said I wasn't at my peak performance today, and I meant it!!!

Moving on ... Cardiologists can make AWESOME POTS docs, particularly EP cardiologists.  That is, electrophysiologist-cardiologists.  Sometimes, they're better than neurologists for POTS in particular, because it has such a cardiovascular symptomology.  You may be able to ask your family doc for a referral to an EP-cardio, or call the hospital and ask for the number of one.

No, you definitely don't need to wait for comprehensive testing before starting treatment, though it's always a bonus the more testing you can get.  As for getting IVs as a treatment, getting them as a *routine* treatment is tricky.  Getting them as a pick-me-up "emergency" treatment is ... well ... routine.  I know, that sounds strange, but hear me out.  If you are in the midst of a flare-up, you can VERY likely go to your emergency room and get IV fluids as treatment, especially if you have low blood pressure or tell them you had low blood pressures at home (if you don't have a BP cuff at home, go get one PRONTO.  your insurance may even pay for it with a Rx from your doc) over the past few days and are having a flare up of symptoms.  They will treat you for "orthostatic hypotension" or "dehydration" with IV saline.  A *good* emergency room will keep the fluids running until you are can walk a lap around the emergency department without feeling lightheaded (i.e. until you feel about as good as you did before the flare) AND your standing BP is within the normal range when they take your orthostatic pressures.  There are a lot of not-so-good emergency rooms, though, so here is my advice.  When you're in a flare, call or go to your primary care doc or cardiologist FIRST and get sent from there to the emergency department (at least the first few times).  They can call ahead and send orders for your care, which are to include that your orthostatic pressures are to be taken every L or 2L (my cardiologist said every 2L last time for me, but I take a LOT of fluids to tank up, 1L may be more appropriate for you) to gauge where you are and decide whether to hang/pump another 1L (or 2L) and also that you need to be able to ambulate before they release you.  If you need a lot of fluids, be prepared for a longer stay; the first bag or two (or maybe 3?) can be run fast, but if you're going to be going home with 7 L of IV saline on board, they're going to be running it by pump after the first bit goes in for safety's sake so that the bulk of it goes in S-L-O-W.  Eventually, your local hospital may get used to your "routine" and be able to look you up in the computer and know what to do with you and you can bypass the call/trip to your doc and just go straight there and tell them you need tanked up for a flare.

In the meantime, if you can identify anything that may be causing the flare, that's good too.  My culprits are mainly heat, stress (emotional or physical like surgeries), infections (viral or bacterial), and having done too much physical activity (but I had FUN at the new year's party, right?!) ... so pretty much everything but sleeping.  :-p  Okay, it's late and my brain is definitely fried.  If I think of more, I'll let you know.  Go ahead and feel free to hit me with more questions.  

-Heiferly.  :-)

[Heiferly]

Sorry for the mix-up!  Confused you with someone else who PMed me this week with a similar flare-up!!  Is there something with the snowstorms that is throwing everyone off balance or what?  Oy!  At any rate ...  sorry, again, here's my response to you ...

Just from what you said, from your currently elevated rather than dropped pressures, it sounds possibly like H-POTS?  Is that kind of where you tend to be (rather than the PD form)?  For clarification, here's an article from Dr. Grubb that describes the two:

http://circ.ahajournals.org/cgi/content/full/117/21/2814

Have you ever been on Clonidine in the past?  And if so, did that work for you at all?  It might be something to ask your doctor about.  

I also wanted to clarify a bit about your symptoms.  I think what you're describing in terms of blood pooling in your head region (nose/ears) may be flushing rather than blood pooling.  Blood pools according to gravity, and only in regions with large vascular beds or veins (the "abdominal bed" or "splanchnic bed" is full of vessels, the walls of which can expand allowing a large volume of blood to accumulate in the abdomen; likewise, blood frequently is known to pool in the "dependent limbs," typically the feet and lower legs where vessels likewise swell and accommodate an overly large volume of blood rather than circulating it back to the heart).  I can explain this in greater detail if you'd like, but in a nutshell, you wouldn't see blood pooling "up," particularly in an organ that doesn't have heavy vasculature like the ear (which is comprised mainly of cartilage with a thin layer of tissue over that).

Flushing, on the other hand, can cause bright redness in the facial and upper trunk region (as well as the feeling of heat), and is a common symptom of dysautonomia.  If you would like to see pictures of flushing, you can search online or click through to my MedHelp profile and browse my user pics (I've posted a few pics on there).  I also have pics of the discoloration (sometimes called acrocyanosis) in my legs on there also if you want to see what that looks like.  Click my username in blue at the top of this post to get to my profile page.  Here are web links (to pictures) as well:

Flushing Pics-
http://topics.dirwell.com/health/5-common-causes-and-cures-for-facial-flushing.html

Acrocyanosis (Note that diff docs use diff terms for same discoloration) Pics-
http://www.ipej.org/0602/raj.htm
http://www.nymc.edu/fhp/centers/syncope/POTS.htm


I've never heard of getting blisters from anything related to dysautonomia, certainly not from blood pooling.  The only thing I can think of is if you are having peripheral neuropathy and getting blisters from a pair of shoes or something unknowingly because you're not realizing the sensation due to the neuropathy.  I would see your general practice physician about those as soon as possible to try to identify the cause, and see if it warrants a referral to a neuromuscular specialist for a workup to rule out neuropathy.  Your GP may find some other cause instead, maybe something dermatological; I'm not sure.  It's always wise to err on the side of caution, though, considering how many "issues" can go hand-in-hand with autonomic disorders.  Ugh, right?

I'm sorry to hear about the panic attacks.  Has your doctor suggested a medication specifically for that?  I highly recommend you check out the threads on our forum here where we've been discussing Clonazepam and Anxiety (I think if you look for those words in the topics, you'll have no problem finding them on the main Dysautonomia page, but if you do let me know).  Quite a few of us have taken some type of anxiolytic, mainly forms of benzodiazepines, which can help to "calm" the central nervous system "oversensitization" that can occur with dysautonomia (especially forms with overactive sympathetic nervous system as in POTS).  This is something you might also want to ask your doctor about, or you may want to ask for a referral to a counselor.  But it's important to remember that there's a gray line between where the physiological symptoms of dysautonomia are and any "emotional/mental" symptoms of an anxiety disorder may be and that any counselor you see should be made aware of this, hopefully by a letter explaining your condition in brief from your doc.  Reading the links from those other threads I mentioned should help clarify this.

Okay, it's WAY too late for me now.  Let me know if you have more questions.  
-Heiferly.

[Sharingme2]

Thank you so very much for your lengthy and thoughtful reply!!!  I appreciate it more than you know (or maybe you do know )  I also benefitted from reading your reply to Jen.  

Jen, I hope you feel better soon hon!

Best wishes for us all for feeling better today,
xoxo
Shari

[jen201041]

Thanks so much for your response! My dr. diagnosed me with PD POTS, I fit the criteria better for H-POTS from what I read though, but I have low blood volume and my dr told me I can't have H-POTS and low blood volume unless I have a connective tissue disorder, which I do not have (thankfully!). I have never tried Clonidine before. Right now my dr. has me on Celexa, which I just started a week ago. It has helped a lot with the panic attacks, but makes me extremely fatigued, dizzy and weak (I cannot get out of bed). My dr thinks those side effects should wear off soon though as my body gets used to the Celexa. You're right about the flushing. I don't know all the right medical terminology for everything with POTS yet (I've had symptoms for 8 years, but just got a diagnosis last year). My blisters have gotten better thankfully. I'm still not really sure what caused them, but my feet were really red and hot for several days when I had increased my Florinef and maybe they were heat blisters or something. I know they weren't from shoes, because I haven't worn shoes in a couple of weeks lol. And I did get an appointment made with a counselor, but it's not for several months. I don't think he'll be able to do much about the panic attacks, but it will be good to have someone to work with to figure out how to deal with the POTS better and how I can live a more normal life. Thanks again for your response! I appreciate it a lot! I'm planning to bring up some of the points you made with my ep-cardio next time I see him!

[Sharingme2]

what are H POTS and PD POTS?

Thanks, Shari

[jen201041]

H POTS is Hyperadrenergic POTS and PD POTS is Partial Dysautonomia POTS. I haven't found much information on H-POTS but Heiferly posted a link that was helpful in showing the differences between H POTS and PD POTS. It was http://circ.ahajournals.org/cgi/content/full/117/21/2814

Hope this was helpful!!

[Heiferly]

Hey you two, I'm going to reply more to both of you and hopefully get you a bit more info, but I'm in a rough spell myself and spent all day in bed and am just now out after 3 AM and should really be getting back in to ... well, go to bed, LOL.  I'm hoping tomorrow is a better day and I can be up and at 'em.  If you don't hear from me again by Monday, please send me a PM (hover over my username in blue and click "send message" in the dropdown menu that appears) and remind me I need to get back to this thread to get more info for you.  

Sorry for the delay.  Take care of yourselves!
-Heiferly.

[Sharingme2]

Heiferly,

I'm so sorry you are in a rough spell!  No worries about getting back to me so quickly, take your time and take care of yourself.

Shari

[Sharingme2]

Hi Jen,

Thanks for the link, I'll go check it out!  Are you feeling any better?  I am starting to feel better.  I have been on a very low dose of Midodrine for a week and something is helping, and thats the only thing I have changed, so I am assuming its that.  I am incresing my dose a little today, working my way up.  I have 2 doc appts next week, one is a cardiologist on friday.  Hope to get more answers soon.

Shari

[Sharingme2]

Jen, the link to the article you sent me to was AWESOME!!  Thanks for pointing me in that direction.  I am going to discuss the article with my doctors this week.  I am seeing 2 new ones and wil be picking their brains to see if they know enough about POTS for me to keep seeing them.

xoxo
Shari

[whittle]

I came down with pots in 2008.  I already had marfans syndrome which I was born with.  I was admitted to hospital in may08 and spent most of the year there.  I am better now.  My battery is running low but here is how I got better
I take paediatric atenalol 3 times a day 5ml.
Seroxat 10mg 1 tablet per day
Exercise is curtail.  If u can't get outbox bed exercise your legs in the air like riding a bike
Then when u r a bit better get a lying down exercise bike
I think hormones play a big part.  I am 46 now and I think they effect young girls who get pots.  I have a mirena coil now (sorry not sure that is spelt correctly) and since I have had it am much better.
I started to smoke again.  This raises blood pressure.  I would not recommend it but it works for me.  I will write again when I have more battery
Lynne

[whittle]

Oh eat GI foods.  Little and often.  Drink tea as it raises BP.  Organic is better.  It's better for u than coffee as it does help the immune system.  I do still have flare ups.  I think stress is a major cause of pots.  It was in my case and I know the flare ups are caused by stress or when my period is due.  But as long as I force myself to go for a walk and stay out of bed gradually I get better.  Pots is a terrible illness.  It's always round the corner.  But we are not going to dye of it and the main thing is to try not to panic as this makes the heart rate worse.  Sorry these were rushed messages but hop they help
Lynne

[Sharingme2]

Thank you Lynne for taking the time to tell us what help you.  We need each other because so few people understand what POTS is like.  Thank goodness for the internet or I never would have discovered what I had, and been able to talk to others with it so I feel less alone!

Above you said you eat GI foods...did you mean low GI foods?  Does tea raise blood pressure more than coffee?  Also you mentioned an "outbox" in your first post, what did you mean?  It was about exercise..  Or did you mean "box exercises" and in that case, I don't know what that is either  LOL  But it seems that you know about exercising when you pretty much can't do anything (which is in my case) so I want to understand what you do.   I totally agree with you about the panic, it makes everything worse!  Sometimes POTS feels so bad that you feel like you will die, it's important to remember we won't.

Thanks again Lynne!
Shari

[whittle]

Sorry I could not find my glasses last night.  It should have read out of bed :).  I'm not sure  if tea raises bp more than coffee but coffee gives me eptopic beats so I avoid it.  I have not got much time now but I have updated my blog today under the comments heading when I answered someones question.  It will show you hoe I got better. If you get time have a look.  I hope the blog will help you
Speak soon
Lynne
My blog http//lynnecampbell.blog.com hope it is of use

[Sharingme2]

Hi there, the blog address you posted doesn't work...can you retype it, I'd love to see it.

Thanks,
Shari