Please help and share experiences!

[niftyusername]

Hello, all.  Just to start, I am a 39 y/o female diagnosed with dysautonomia-POTS as of June 2016, finally after multiple hospitalizations and MD office visits.  The doctors all suspect that it's been present all my life but I have managed to compensate until recently.  It started out with the typical tachycardia (140s to 200s) with hypotension, syncope, vertigo, etc.  For whatever reason, the symptoms would resolve and I lead a normal life until now.  Like most of you have said before, I have good days as well.  However, recently things have changed to a different phase of this dysautonomia journey.  I think I've graduated to the hyperPOTS or something else, I don't know.

At first, I noticed my weight going up (over 9 or more months) slowly... I was about 126 lbs (57.2kg) at 5'7" (170cm) to 142lbs (64.4kg).  I'll grant you that physical activity was definitely limited due to intolerance as well as the syncope, however, I generally only eat once a day, at most one meal and a snack.  I cut sugar out of my diet, most dairy.  So, being that I was pretty tiny most my life, this came as a surprise even with the inactivity because I was naturally lean.  That isn't the disturbing part, just where the changes started.

Just as background, I am currently fighting for disability benefits, so I have not worked in two years because of my doctors' orders.  I have lost everything in the meantime, except the weight.  😑

In the past few months (about 7) I noticed the "surges."  Even with my background, I've not been prone to anxiety or panic attacks.  This was out of the blue, without warning, and with that feeling you get after someone nearly t-bones you in the middle of an intersection, but worse.  Not only did it feel worse, but it lasted a lot longer... maybe 5 minutes plus?  Then it would go away.  The feeling was accompanied with an accelerated heart rate but not terribly impressive, I'm sure due to the beta blockers I'm currently taking (propranolol 10mg TID).  My blood pressure would be fine, O2 saturation was unremarkable, etc.  It happened with little regularity that I just ignored it when it passed like most of the other annoying dysautonomia related things we all experience that isn't fatal, but feels like it is.  I often joke that when I die, it'll come as a surprise.  The impending doom feeling with obvious physiological symptoms have been present for years.  Now to the new phase of the illness.

I went to my EP cardiologist in March of this year and noticed my blood pressure was up (136/82 or something like it) when normally it is pretty low.  I expressed my concern, but he was dismissive like he predictably always had been.   From that point on, I started monitoring it more closely.  When I got home, it was lower and in a normal range for me, so I chalked it up to being in public.  Since I've been ill and not working, I don't get out much, so some social anxiety is there.  Paranoia about my illness and appearance (purple skin, tremors, sweating, possible syncope, etc) is the main reason.  At any rate, I continued to watch and noticed later a disturbing trend of hypertension with some of these bizarre surges and some without them.  My pressure has been all over the place, dropping to some serious lows (80/45) to equally disturbing highes (160/100).  I have never experienced hypertension in my life.  I've been to the ER a couple of times (once for adverse reaction to new meds prescribed by my neurologist) in the last week because my pressure wouldn't lower, even with bed rest and sometimes it would be just diastolic elevation.  I try to stay calm and rational but with these surges (I think may be NE) it is enormously difficult.  I haven't moved from the bed today and the surges continue, with hypertension I'm sure but I've chosen not to monitor it today to give the anxiety a break.  I know it doesn't help.

My neurologist has assured me that Spring time is a rough time for any of us dealing with dysautonomia.  The problem I have is that this is a new presentation for me.  I don't have the money for extra doctors or tests, so I have zero idea what is going on and I won't get answers until I am approved for SSDI.  In the meantime, I worry about my kidneys, brain, etc with all the bouncing around.  My headaches get so bad that it feels like the top of my head is about to pop off, my eyes feel like they're coming out, and the roof of my mouth wants to cave with all the pressure.  I noticed some people expressing the same symptoms along with the increased urination, insomnia, surges, anxiety, etc but no one has an official diagnosis?  I'm curious what everyone else is going through.  Did any of you "graduate" from orthostatic hypotension POTS to hyperadrenergic POTS?  If an physician is reading this, is that even possible?  Also, how is everyone coping with this?  I am barely able to tolerate going to the bathroom.  It has gotten really bad for me and I hope some of you will share your thoughts and experiences.  I'm at the end of the proverbial rope.  Help!  And thank you for your time and attention!  Be well!

[Pistol]

What you describe sounds almost exactly like my story - 42 years old and same BP fluctuations and symptoms. I was started on metoprolol then bystolic - which both made things worse. Then midodrine ( worse ), clonidine ( worse ), compression stockings ( worse ), salt tablets ( could not tolerate ) - I had to keep cutting down on my work ( RN ) because of repeated syncopal episodes and eventually seizures from extreme vasoconstriction. I finally saw an autonomic specialist ( took one year to get in with him ) who diagnosed me with hyperadrenergic POTS based on Tilt tests, labs, Vital signs and symptoms. The medicine that helped me most was Carvelidol ( which is both beta- and alpha bocker ) but also vasodilators like Diltiazem. Most effective for surges and flares are saline infusions over 24 hours - they seem to interrupt the cycle that causes the ANS to respond with vasoconstriction. Actually - when my BP is high the infusions cause the BP to normalize and symptoms like Chest pain, headache, shaking, syncope etc go away.   A normal response to IV fluids is an elevation in BP - everything is opposite with me. ---- The diastolic elevation also is what I have. ---- Most cardiologists are dismissive towards POTS - I believe it is because our symptoms are opposite of what they are taught the body does and that means they would have to rethink everything they were taught. But it sounds like you have a competent neurologist who - at least - understands your symptoms. Unfortunately you need a cardiologist to treat many of your symptoms. I can only recommend that you search for a cardiologist familiar with dysautonomia - you may have to go out-of-state if there is not one in your area. ( that's what I had to do ). There are several listed on this site. In the mean time - ask your doctors if any or them would consider Saline infusions for your flares - I experience many of the same symptoms and they do help me a lot. Best of luck to you - keep going! 

[Pistol]

By the way - I WAS 42 when my symptoms started, I am now 51. Also - one meal a day is not good for dysautonomia - several small meals are better, they help with the GI issues but also prevent surges and nutritional problems. Do you drink enough fluids? Do you load up on electrolytes and salt? 

[niftyusername]

Hi, Pistol!

Thank you for the quick response and the input.  To answer those questions, I couldn't tolerate the sodium tablets for long, so I upped the salt at my meal time.  You are most definitely correct with the small meals and my neurologist warned against it.  It is strange you mentioned the GI issues; I've dealt with gastritis with a GI bleed last November.  When I was give fluids a few days ago, I did notice a drop in my blood pressure after it being up so high.  I'm trying to keep hydrated and resting, though it's been difficult.  I try to stay busy with some sort of chore or another, so that's off the agenda.  If I may, do you have serious cognitive impairment when your episodes happen?  I feel like I've been drugged and there is nothing euphoric about the sensation at all.  This has been a nightmare.  I am currently working with an attorney to see if I may qualify for a grant to be seen at Vanderbilt.  Something's got to give.  This is no way to live at all.  Also, how long did these episodes last with you?  Was it chronic?  I'm glad you've found a way to treat it!  

[Scout]

Hi there, 

I really relate to this. 

I had the exact same thing - my POTS started as having constant / standard low blood pressure, and all the accompanying symptoms of "standard POTS", but then suddenly I became hyperadrengenic. Similar to you, it is often (almost always) just my diastolic that is high. Just today, my diastolic was 100. It dropped shortly after, but still - any kind of "surge" makes it go very high and alarmingly so.

Doctors aren't taking me seriously in the slightest, because I am "young" (nearly 30), and it is driving me around the twist. My body seems to be going haywire. 

I can feel that something is wrong, but keep being told it's just anxiety. Yes, I have anxiety - absolutely, but the anxiety was caused by the initial surges, which came on out of the blue and when I am relaxed, not the other way around. The not having answers has given me the anxiety. Instinctually, I believe we know when something is "off", and this is the case. 

Unfortunately all I can recommend is that you push for endocrine tests, such as aldosterone / renin / angiotensin (I am trying to get these tested myself but doctors are being very useless, sadly), and cortisol, catacholomines etc. 

The impending doom feeling you speak of hits very close to home, and I am so sorry you are also dealing with this. It's so, so rough. Please feel free to message me on here if you need to. 

[Pistol]

Hi - to answer your questions: yes, I deal with major cognitive issues. I had neuro-psychological testing done and they found that I have ADD ( common in POTS ) which causes my forgetfulness, brainfog and trouble finding words. Al; that is caused by the chronic hypoperfusion to the brain.  -- Gi issues are common for POTS, I had many GI tests and take tons of meds for it. --- I was seen by Vanderbilt years ago at the onset of my symptoms but they were not at all helpful - that does not mean that it will be the same for you. I know they do research - could you get in that way?--- I am on SSDI due to POTS, it took a while but once I had an appointment with a judge and he heard my story he fully supported my disability. --- Please do not give up or despair - many of us have been in your shoes and know how frustrating and scary this all is. Just know that there is always a light at the end of the tunnel and there are many doctors that know what to do - we just have to find them. In the meantime - follow the advice from the members on this forum, we all have survived this far and can share tips that helped us make it through. We are here for you - you are definitely not alone!!!

[Shannoncr]

Hi,

i can absolutely relate to your experience. had low bp my whole life - all the sudden it’s high. cardiologist said it’s probably genetics, because my mom & sister were both diagnosed in their early 30s with high blood pressure. (I’m 33, I’ll be 34 next Wednesday) same with the weight gain. I can relate to the impending doom feeling also - although I have a history of anxiety I can tell the differences between anxiety attacks and the physical feeling of anxiety (no one believes me though but there’s a different feeling to me)

i wish I had answers for you. I know how hard it is dealing with SSDI & how limited funds can determine whether you have to cancel a doctor appointment or not, on top of feeling like crap all the time.

i haven’t been diagnosed with POTS or any autonomic disorder (I’m trying to speak with Dr. Blitshteyn- just waiting on my medical records) but I was curious why your doctor said spring time is hard for those with Dysautonomia?

 

[yogini]

if You are having hypertension I would first look at any changes which could be causing it. For example you said you increased salt at meal time and you also mention your neurologist prescribed a medication.

[joiedevivre]

I don't know if I've changed the type of Pots I have, but a lot in your description sounds like your now having panic attacks ( "impending sense of doom") or at least much increased anxiety. I also have been prone, especially at certain points in my life, to getting panic attacks. Admittedly for me it makes my bp drop not increase, but autonomic dysfunction is individual. I also have been more prone to attacks when I'm most feeling unrelenting anxiety about my illness and myself and appearance ( going out in public, looking ill). It's hard to be out in public feeling like you might not survive this outing and not feel your anxiety about your illness overwhelm you, and feel separated from the normal people around you. I don't know what's happening with you but I think maybe your anxiety has increased a lot? 

[niftyusername]

Hello, all!

I want to thank you all for replying, first and foremost.  It is an amazing feeling to have some support outside of immediate family, so thank you again.  Although I would wish that not one of you had this, it is comforting to know I'm not alone and I hope I can do the same for you all.

@Pistol Thank you so much for the input.  When you were seen at Vandi, do you recall what testing was provided or any of the labs?  It may be too much to remember, I don't know.  I'm afraid to even think of what they wouldn't do because of my money issues.  It's been a long two years and I've received my second rejection from the SSA.  You read my mind.  It is an awful, lonely, depressing ride but I know I don't have to tell you.  Thank you for everything.  I mean that.

@Scout Thank you for your reply and input!  I don't think that age has anything to do with what we're feeling.  It is all very individual but we have some common symptoms that can help each of us along the way.  I honestly believe that your anxiety has nothing to do with your episodes or surges!  I worked in emergency medicine for over a decade both in the field and in the emergency room.  The MDs I knew very well mistook this as anxiety and they knew me!  I didn't have anxiety or panic attacks... after seeing three psychiatrists, you'd think they would know; I never got a diagnosis of anxiety or panic disorders.  I *know* you can tell the difference, because I can.  It just happens and it's not worry or panic.  I right there with you, dear.  I'm here if you want to talk.  It's bad enough having to deal with it alone. 

@Shannoncr  Hi, there!  Thank you for your input.  I'm also so very sorry you're having to go through this.  I appreciate a response regardless if you have answers.  Just being able to talk about these things and know someone understands can be such a relief and knowing we have folks out there who sure the burden of this disorder, it brings tears to my eyes.  Really.  Thank you.  To answer the question, I'm not really sure.  Dr. Rada (Tri-State Neurology Memphis office) says that Spring time is usually bad for us with symptoms, that they are harsher for us and we will be prone to bad episodes around this time.  Winter time is usually better for us, so I've thought of moving to Alaska or the Antarctica.  😊 I made the assumption that it's similar to coming rain to the broken bones or arthritis of some folks.  Then again, it is individual and it has proven true for me.  If I may, how have you been feeling with this weather change?

@yogini That also occurred to me.  I ended up in the ER due to the new medication I was prescribed (of course it didn't work as intended) but I'm not sure if it's due to the dysautonomia sensitivity to drugs or what.  Believe you me, I'm trying my darnest to find out what is going to make my body and brain happy to make these episodes subside!  If I find something that works, I will definitely keep you all updated!!

@joiedevivre I wish it were that simple.  In February of this year, i went to yet another psychiatrist with a diagnosis of dysthymic depression with a major depressive episode baring all the circumstances in mind, it was appropriate.  Like Scout, I can tell the difference between the worry of anxiety and these "surges" though I don't doubt what you're saying... I'm sure I've developed some anxiety throughout the course of this illness, as I'm sure we all have.  It is difficult on so many levels!  Once I am approved for benefits, I will be addressing that issue and then some!  If I may, have you seen a psychiatrist for your anxiety?  We're you tested for renin angiotensin, catecholamine levels, etc?  I'm just curious simply because MDs can be dismissive at times, not all but there can be other explanations.  Thank you for your reply!  I really appreciate it!

I hope you are all doing well.  Keep me posted on how you're doing and please message me if you need an ear!

😊❤

[dysygirl]

Wow! It's like I just read my own story. I'm 41 and was diagnosed with POTS and Ehlers in 2017. I have had a lifetime of medical issues that always seemed to be chalked up to "anxiety." I have tachycardia, fluctuating bp (usually low but sometimes crazy high,) dizziness, vertigo, GI issues (I will eat and feel full for hours after with nausea and awful burping,) and then there are the surges.  These are the worst!!! You feel like something really bad is about to happen to your body and that it triggers awful anxiety even after the surge is over.  I have been working on doing slow deep breaths when it happens. I also have started a new coping mechanism where I think "have I gotten this symptom before?" If the answer is yes, I take a deep breath and say to myself I've had this before and it was not fatal, it will go away.  My doctor prescribed a medication for the surges but I did not want to take it. He referred me to the Osher Center for Integrative Medicine at Vanderbilt, to try and get alternative ways to control or eliminate symptoms. I wish I knew the exact cause of each symptom and if there are other issues that haven't been discovered yet.

[Shannoncr]

@niftyusername I live in buffalo, ny so we’ve only just started to have spring time weather lol. it snowed last Sunday 😂🤣 It’s hard for me to tell if I feel worse in spring than I do in winter. I definitely feel like I push myself a lot harder in the spring/summer which usually makes me feel crappy. for example, I cut my lawn today and did a little gardening. It took me 2 hours and when I was done, I was exhausted. Didn’t do much else today, aside from load and run dishawasher and laundry. It is frustrating being 34 years old and getting tired from something so simple but I am grateful I am able to do these things, as I know many can’t. 

sending you well wishes!