hello, I’m new here

[Shannoncr]

I am new here. I have been ill (I guess that’s what you’d call it?) for quite some time now. My first fainting spell happened when I was in kindergarten at the pediatrician. He did the finger prick to check my blood sugar during a routine physical, i told my mom I was going to be sick & I got sick then promptly fainted. The doctor said it’s a common reaction to the site of blood (which I know it is & I am still grossed out by it & often still feel faint when I see it.) 

When I was about 10, I stopped eating. I was later diagnosed with anorexia but I can’t for the life of me remember why I stopped eating. I don’t remember thinking I was “fat” until I was a teenager. (They’ve also done studies that show when your body is in starvation, you tend to focus on your body & body dysmorphia is common in cases of starvation.) anyway, I didn’t get any better as I got older & as I started to eat again I became constipated that’s when I started abusing laxatives. I was passing out constantly but it was always attributed to my eating disorder so it’s always been looked at like the chicken or the egg. In 2005, I was officially diagnosed with neurocardiogenic syncope via tilt table.

In 2009, I had something totally bizarre happen to me. I don’t know if it was a seizure as I’m not sure I’ve ever had one before but I was standing at the top of my parents back porch (it’s only three steps) getting ready to open the door & all the sudden my legs began to shake & then my arms & I couldn’t hold onto the door anymore so I fell backwards & landed on my back, hitting my head on the concrete patch on the driveway. I lost consciousness but I have no idea for how long. When I came to, I felt very weak & exhausted - an exhaustion I’m not sure I’ve ever felt before. Obviously my head was pounding. For days later, I had the worst headache I’ve ever had (I’m prone to migraines but this was bone crushing pain & nausea) I finally went to the hospital & they said it was just a bad concussion. 

I checked into rehab for my eating disorder a month later (my third time in treatment). They took me off all medications I was on, they worried that the lexapro i was on (40mg which is above what is considered therapeutic) may have caused a seizure - they also worried that since I had been on countless antidepressants with no desirable results, maybe my body was just totally rejecting them now.  Who knows, but I was at their mercy & I desperately needed help because I was no longer able to function. 

I had another scary incident happen while I was hospitalized. I had just gone pee, I got up off the toilet to wash my hands, I reached for the door & all the sudden everything went black but I was still standing & could still hear (our bathrooms were in our rooms literally about four feet from my bed) so I opened the door & laid down. I tried to speak but I am not sure I was able to say anything. A nurse came by, I was able to see at this point but unable to move. I remember talking with her, she asked why I was on the floor & if I was ok. She called in more nurses & they tried to get a pulse but couldn’t. They tried to get a blood pressure, couldn’t. The whole time they were working with me (this was an acute psychiatric hospital, I don’t know if they even had paddles) I can hear what’s going on but I can’t see, can’t speak, & I can’t move. They said I turned grey. They finally got a BP & it was 54/45. I don’t know how long it all lasted but by the time 911 got there, I was conscious & I remember laughing about all. Saying I didn’t want to go to the hospital. I was exhausted, sweaty, & cold. I just wanted to sleep. My vitals were back to normal again. 

I received a million dollar work up. Holter monitor for 30days (showed tachycardia, bradycardia, PVCs), stress echo, regular echo (heart is structurally sound, mild mitral valve prolapse &mild tricuspid regurgitation) told my heart is fine & prescribed atenolol 12.5 BUT I have low blood pressure & a low heart rate so I have to have my vitals taken before I am able to take the atenolol - if heart rate is below 60 I can’t have it. 

I went to neuro to have my head looked at because at this point in time, I am still having these terrible headaches. I was diagnosed with post concussive syndrome & surprise, they found I have syringomyelia. they don’t know if I was born with it or if it happened when I was in a car accident at 17yrs old & my head cracked the windshield. They told me it needed to be monitored but if I still had feeling in my hands & feet & as long as I’m able to still tell the difference between hot & cold, there’s no reason to begin any sort of treatment. No problem. 

Now onto hematologist. My ferritin level is at a 2. They try iron supplements & nothing happens. I received IV iron infusions with no dramatic changes (other than I had a weird arthritic response after the first three infusions.) They never got it higher than in the 30s, with one reading at 67. Just told me my body doesn’t absorb nutrients the way everyone else does. 

I was hospitalized inpatient in the eating disorder hospital for 3.5 months. The entire time I was there, I was a fall risk & my vitals were always “orthostatic” - so I had to have them taken three times a day lying down, sitting up, then standing. I never knew what any of this meant. I just listened to the doctors. 

Fast forward to 2013. I’m in San Diego at the zoo with my sister in front of the hyenas. She looks down at my legs & asks what’s wrong, I said nothing. Five minutes later I’m on the ground & have no idea what’s going on. (My sister is a PA, we were on vacation celebrating her graduation from school) she said “I think you have POTS” I had never heard of it before & thought well I have a cardiologist I think they’d know if I have this. 

I did alright for quite a few years. My cardiologist explained what I need to do when I start to feel symptoms of fainting. Told me it’s good I still get the signs, when the signs stop coming, we’ll need to discuss a pacemaker (“but not the kind old people get” is what the cardiologist said) kept me on the atenolol 12.5 but made sure I was taking my vitals before taking it - after a couple of months on it, my heart rate plummeted to 35 so I had to come off it for a while. 

Now 2017. I was having PVCs so bad that I was becoming dizzy, short of breath etc. I went to the hospital, they just said I was having PVCs & it was no big deal. Had all the same tests done again with my cardiologist (same cardiologist has been treating me since 2011) all showed the same things as they did in 2010 & 2014. Except now over 20% of my heartbeats are PVCs. & I know have high blood pressure. (160/100 was about the average) my cardiologist is so confused because in 2014, we were trying to find ways to raise my BP. (Increased salt & hydration has been part of my routine for years) we did a catecholamines test done (& after reading about it, I’m not sure the test was done correctly. I just walked in & she took my blood. There was no lying down & sitting up. But I don’t know) it came back normal. my thyroid was a little off (I’ve had hypothyroidism since I was a young adult) but she didn’t think it was off enough to cause all this. My ferritin is at 12, which is still within normal limits according to the paperwork (should be between 10-200) She put me on losinopril 2.5 and carvedilol 3.25 twice daily. (Don’t laugh at the low doses, I am so sensitive to medicine we have to start low) it worked for a month & the palpitations came back worse than ever. Doubled the dose of carvedilol. Same thing, worked for a month & then got worse. I also developed Raynaud’s phenomenon during this time - she said it may be the meds but it didn’t go away after coming off the meds. Another holter monitor for 14 days. Can’t figure out why I’m having so much tachycardia. She sends me to EP. he tells me “it’s just PVCs. They’re not dangerous & usually when we tell patients that, the PVCs stop. “ (remember, I have a lengthy history of depression & anxiety) but he wanted me to wear another holter monitor for 24 hours (I am allergic to the sticky leads so my skin was raw at this point & im scarred from it) & he wanted to see me again in 2 months. I don’t want to go back. The PVCs never stopped. 

My cardiologist said she wants a second opinion. She took me off lisinopril & carvedilol & put me on metoprolol 25. My BP is still higher than what it was a few years ago & I’m still having PVCs & tachycardia. I’ve done the poor man’s tilt table & my heart rate jumps 33bpm from lying down to standing (but not every single time so I think the metoprolol is helping a little) & after I eat it skyrockets. She said I don’t have POTS because that would’ve shown on my tilt table from 2005. My primary care wants to talk to cardio first (she didn’t understand why EP wanted to see me again if he thought it was all in my head) but then I remembered the syringomyelia & the lesions they found on my brain. 

I have been trying to figure this all out on my own. I’m beginning to wonder if my diagnosis of depression & anxiety was ever even accurate at all. I am definitely depressed & anxious but I am also a 34 yr old woman who has all these unexplained symptoms that are invisible which I think would cause anyone to be depressed & anxious.  I am exhausted 24/7. I have terrible night sweats, I sweat profusely (at least in my eyes) when doing things that should exert only minimal effort, I am out of breath doing small things, I’m dizzy, I feel cloudy like a dream or something, I’m forgetful (so embarrassing), my stomach is a mess, & I have weird random pains in my body. I realize a lot of this could be caused from my years of starvation. I know that & have accepted it. I have no answers. I often just feel hopeless & at my wits end. I am currently waiting on my primary care to fax my records over to Dr Blitshteyn & I hope to have a consult with her soon. I’m sorry I am complaining so much, I guess I’m just wondering if any of this (I know it’s a lot) resonates with anyone here or if I am just grasping at straws.

Thanks for taking the time to read 

Shannon

[DizzyPopcorn]

Ugh, sometimes i actually feel bad for complaining. I compare myself to many here (including you) and i have it much, much easier. You know, us males sometimes complain a lot for "small" things 🤣.

I've read your entire post. I am so sorry. It must be incredibly difficult to live with your current condition. Unfortunately, i do not have experience with your specific symptoms, nor am i a doctor, but i wish you the best and hope others here can help you finding answers / seeking the necessary medical expertise.

 

[MomtoGiuliana]

So sorry you have struggled for so long with no complete answers and such a progression of symptoms.  

Are any of the physicians you have seen specialists in autonomic dysfunction?

Have you been checked for any deficiencies--Vit D, B12, etc?  That you have a history of an eating disorder makes me wonder.  My POTS came back with a vengeance after being reasonably well for 10 years.  My dr has found I am low on B12.

[Shannoncr]

@whoami thank you for your kindness. please don’t ever think you’re complaining too much. sometimes it feels good to just get it all out. & I know that post I wrote made it sound bad, not all my days are bad. I do have some really good days & I’m grateful for every single one of them. 

@MomtoGiuliana hi, I don’t think any of my drs specialize in autonomic dysfunctions - both my primary care & cardiologist had heard of POTS but my primary care said “there’s very little known about it” (i love her though because she is a DO & literally treats the patient as a whole instead of just treats symptoms - she said she is willing to work with Dr. Blitshteyn if I can get a consult) & my cardiologist said she is no there equipped to diagnose for POTS but that the EP would know more. That’s why I am hoping & praying I can do a consult with Dr. Blitshteyn because she does specialize in autonomic dysfunction. 

As for deficiencies, I do take B12 (the sublingual) at the request of my primary care. I’m not sure about vitamin D but I live in buffalo, NY so I’d assume it’s low. (That’s the vitamin you get from sun, right?) I had basic blood work done a few weeks ago & it was all normal except my thyroid was off a little. My lymphocytes (I think?) were high but it must not have been a big deal because it wasn’t addressed. I do test ANA positive (& have for years) & I honestly don’t know if I’ve ever been tested for any of the major autoimmune disorders. Honestly, I stumbled across this site while doing my own research on POTS when my sister brought it up again a few weeks ago so I am still learning about how to be my own advocate & what tests & things I should be asking for. 

Thanks for the response, I really appreciate it. 

[MomtoGiuliana]

Yes Vit D we make from sun exposure.  Interesting that you have been identified as having a B12 deficiency.  You might want to look into that further.  Depending on how deficient you are you might need more aggressive treatment (eg shots and/or larger doses).  B12 deficiency can lead to neurological conditions.  I've read this deficiency is very common in young women with a history of eating disorders.  Great that you will be able to see a specialist (Dr. Blitshteyn).  Perhaps you could ask her about B12 as part of your consult with her.

Here is an article that found that teens with POTS were more likely to be deficient:  https://www.ncbi.nlm.nih.gov/pubmed/24366986

Here is an article postulating that treating low Vit D could help improve POTS symptoms: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5588633/

 

 

[Shannoncr]

@MomtoGiuliana I will definitely look into it. Thank you for the suggestions, I sincerely appreciate it. Any & all suggestions are welcomed.

[Pistol]

I believe you DEFINITELY need to see an autonomic specialist. In the meantime- these are things that help me - taking supplements, DRINKING FLUIDS, ingesting salt, exercising ( you do not say if that is something you do or even are capable of ), resting when your body requires it ( if possible - I do not know if you work ), but most of all listening to your body! do not fight the symptoms - just lie down when you have to and breathe deeply when your HR races and know that it WILL be over - even if just temporarily. A specialist will be ever so helpful and encouraging to you. Hang in there!  

[Shannoncr]

@Pistol yes, I can exercise & do. I ride my stationary bike (it says for 21 mins but I have to stop each mile for about a minute to catch my breath) I also do yoga & Pilates. Id really like to try rowing. I will admit, my symptoms have gotten worse over the last year, particularly the last six months. I do generally try to listen to my body but I am often guilty of pushing a little too hard. I realize that my original post was kind of doom & gloom, but I’m not always having symptoms that effect me so much it disrupts my life. Most of my symptoms are just things I’ve learned to live with & are just normal for me. I’ve just learned to do things a little differently & I feel like as long as I’m still upright & conscious, then so be it. 

I also want to make it clear I have been in recovery for the last seven years with only a few slips & lapses but no relapses. Most of my slips & lapses are because my stomach bothers me & it’s physically hard for me to eat, not my eating disorder thoughts. (I know that sounds weird to people who don’t have an eating disorder, just think of it as like an evil twin who points out ALL of your flaws 24/7 & exaggerates them to the extreme) 

The salt thing has been weird for me. I know I’m supposed to increase my salt intake but I never know if I’m actually getting the amount I need? I love salt, I crave it often. My sodium (bloodwork) is always one point away from being considered low (I think it’s 132 or something) & I don’t even know if bloodwork is the most accurate test for sodium. 

Thanks for the tips & encouragement! It is greatly appreciated 

[Guest KiminOrlando]

Have you seen a Rheumatologist? There are all kinds of things this can be besides dysautonomia, meaning dysautonomia would be a symptom, not the illness.  MS because of brain lesions I think you mentioned, and sarcoidosis, neurosarcoidosis can do this. Those are extreme and unlikely, but a Rheumatologist would look at stuff like that since you have the positive ANA. Gastroparesis could explain your eating issues and is also a symptom. I think some of us start with dysautonomia, then end up uncovering more. Mine was autoimmune. 

I hope you find answers.

Kim 

[Shannoncr]

@KiminOrlando hi Kim, I haven’t seen a rheumatologist. my aunt was also concerned about MS because for whatever reason, the area I live in MS diagnosis is double the national average. I’ll have to see if I can get an appt with a rheumatologist (I honestly thought they only dealt with rheumatoid arthritis. shows you how not smart I am lol)

if I may, how much testing did you have to go through to be diagnosed properly? Were you able to find treatment to help improve your symptoms? 

thanks for the suggestions, it’s been incredibly helpful. 

[niftyusername]

@Shannoncr Hi, there!  Just to start off, I read about all your symptoms and we have very similar issues.  I didn't have an eating disorder, though I was super thin (around 94lbs at 5'7" at my lowest, which was beyond my control.  Although I was small, there would be moments... days even, that I didn't have any desire to eat.  It was like it was a huge burden or type of inconvenience.  From what I understand, that isn't unusual for people with dysautonomia and since we are born with the condition, I wouldn't necessarily say it is comparable to an eating disorder.  Whether you had an issue or not, this disorder is nowhere near being your fault.  It is just there, waiting to take over with sickness or stress, and it will manifest in a multitude of thrilling ways... or it does from my experience.  

I'm in the same boat with you, either way.  The dreamy, foggy feeling you describe; I have always said it feels like I'm not really here and my spirit is walking three steps behind my body, however there is nothing euphoric about it at all!  I have cognitive impairment with memory problems just like you as well as the super erratic tachycardia and blood pressure.  It is horrid to say the least and I know I'm getting "surges" of norepinephrine with doses of epinephrine, here and there.  It is terrifying.  I've not been afraid of anything in my entire life.  Not only is it terrifying to experience, but each symptom is as well.  I also have frequent PVCs as well as PACs.  They are benign but it still feels horrible.  I'm there with you.

I love suggestions from other folks, but it is definitely as individual as the person facing this condition.  On the bad days, I do what I'm able to tolerate, otherwise I will pay a hefty price.  I'm not sure what works for you, but don't give in.  You know how you feel any given day.  Sometimes exercise is helpful, sometimes it isn't.  Maybe sodium helps, maybe it doesn't, at times.  The one thing I found that is consistent is a support system and taking each day as it comes.  This site has been a miracle, honestly.  It didn't occur to me that other folks had experienced the same things and it is wonderful to hear about how each person deals with the day to day symptoms.  

At any rate, I hope you find something that helps and if you do, please share what you find!  I hope you're doing well!  Feel free to message me from time to time to let me know how you're doing!

😊

[Pistol]

@niftyusername - I agree - this forum is a life-saver of sorts. It is pretty much impossible to explain our symptoms to someone, they thing it must be "something" - heart? nerves? brain? To look healthy - as most of us do - yet not be able to do the simplest things? But here we do not have to explain or justify or defend ourselves,  we can just say what's going on or ask questions or seek opinions and everyone gets it. Because - unfortunately - we are all in the same boat. @Shannoncr - I hope all is well with you. Reading over your posts I just want you to know that dysautonomia is a beast that cannot be tamed, it does as it wishes. We can do all we want - and many things do help - but in the end we have to give in to whatever is going on at the time. It is a constant balancing act and for every small achievement there may be dissappointments to come. This is a lesson I had to learn the hard way. But there is a lot we can do and sometimes we do better with exercise and salt and other times we may need rest and meds. I have found that whenever I find a treatment that works I get so excited b/c I think I am cured. And after a while it stops working ( or my body changes or the disease changes, whatever ) and I am all crushed b/c now I have to start over again ( rest, reconditioning etc ). What you need is a good doc - I could not go on without my team of compassionate, understanding and brave docs! --- Be well! 

[niftyusername]

@Pistol I couldn't agree more with you!  It's crazy how when you (in general) try something new and it seems to work and suddenly you're dragged back down!  It is certainly frustrating when it happens.  I did everything suggested with the initial diagnosis in hopes of returning back to normal to no avail.  I can't remember what it is like to be that normal person I used to be but the new normal is the goal I guess, with little goals here and there.  I've been looking for some modified yoga positions as a friend suggested.  I had a few falls (putting it mildly) because a vertigo and near syncopal episodes.  Ugh!  Frustrating!  But the search continues for more suggestions!  Hope you're doing well! 

😊

[Shannoncr]

@niftyusername & @Pistol this site has definitely helped me to feel less alone & less crazy. it’s not that my parents aren’t supportive (my mom is a nurse so she’s always been the type like, if you’re not bleeding to death, you’re still breathing, you’re fine type) it’s just that with my lengthy history of anxiety & depression, everyone thinks whatever I am feeling is a manifestation of that anxiety & depression (& it may be but it still feels pretty awful). but lately she’s been more concerned, mostly because the fainting & the near fainting where everything goes black but I can still hear all around me but I am like paralyzed... (has this ever happened to anyone? Is it possible I can’t really hear what’s going on around me & i am just remembering it wrong??) & the chest pains but it’s not heart pains, it’s like my actual chest bones & it feels sometimes like there’s a dagger going right thru my chest to my back, & the shortness of breath. I made her watch that “changes” video & the part where Dr. Blitshteyn says “patients with Dysautonomia are very sensitive to medications” my mom was like, this is you - this all sounds like you. I just broke down crying the other because I just want to be normal again but I can’t even remember what my normal feels like. 

Everyone teases me because I plan everything. My trips to the grocery stores, any errands I have to run, etc. it’s always been attributed to my OCD. but I realize why I do it because I had to sit down on the floor in Walmart the other day picking up cat litter. It was an extra trip, I hadn’t planned on taking. & it was one trip too many. 

as much as it pains to to see you guys have tried things & it worked, only to have it stop working later, it also comforts me because again, it makes me feel less alone & less crazy. It’s hard to explain to people that yeah, I tried magnesium to help with the PVCs & it worked for about two weeks & they came back with a vengeance. 

I see a few people on here say they’re on a low sugar diet &I was wondering how that factors in with dysautonomia. I’ve never really been a big sweets eater but if I eat candy, I get the worst kind of stomach ache. It’s like a painful bloated, nausea. Baked goods are a little easier but they have to be homemade or from a bakery - like I can’t really eat Oreos or Girl Scout cookies. This could just be weird eating disorder things (they told me a lot of my food issues/stomach issues are) but I’m not totally convinced. 

Thank you again - so much. 

[Pistol]

@Shannoncr - all those symptoms sound exactly like POTS. You wanted to know about syncope - I have both syncope and seizures from POTS and for me I am completely out with both, except for a few times when I remembered what people said while I was passed out. -- I always follow a low - sugar diet and no concentrated sweets because I have hypoglycemia from POTS. Plus I have really bad GI issues from dysautonomia so I have to avoid many foods ( I also have IC so I cannot eat acidic foods ). Your Gi problems may also come from POTS. I have learned that frequent small meals are better tolerated than three regular ones, plus it helps with the blood sugar ( that may be an issue for you too? ) A lot of people develop GERD and IBS with POTS and it may be helpful to cut out some foods ( sugar, dairy, gluten etc. ) to see if you feel less bloated and nauseated. Any frequent Gi problems should be checked out by your doctor though, he may want to do testing.   --- I also have to plan any activities beforehand. Since I am mostly housebound I only go out to appointments or - if able - to church, my husband does all the shopping and driving ( bless his soul - he takes our 13 year old daughter clothes shopping, could you imagine?) Before I became disabled I ignored my symptoms and I know the floor in Walmart very well - plus many other stores and public places, caused quite the stir in my prime! Now I have learned to listen to the signals my body gives and only go places where I can sit down when needed and my husband can take me home when I get bad. I used to walk for exercise and many times I got stuck sitting on the ground until someone found me and took me home because I just could no longer walk. --- It does not get to this point for everyone though, there are many treatments that can help - and do for many. But until you find the right treatment for you it might help to follow the signs and adjust your day around your symptoms. -- I hope you feel better soon, maybe you can let your mother read some posts on this forum if she has difficulty understanding what it is like. Best wishes - Susanne