Postural Tachycardia/Heart Issues/ Always Tired!

[TheBrownHorse]

I have Postural Orthostatic Tachycardia Syndrome, which basically means, whenever I change positions, my blood pressure drops and my heart rate skyrockets. It is an autonomic nervous system dysfunction with an bunch of other symptoms- extreme fatigue, “brain fog”, dizziness/ passing out, heart palpitations, exercise intolerance, the list goes on. It is not a heart condition though, that is what I refer to it as it is the easiest for people to comprehend. Really my ANS is wacked out, and my heart is the main thing effected.

It is not uncommon for my heart rate to be around 190 while I’m walking. WALKING. I don’t even want to know what it is when I’m riding! Other times, my heart rate is well below 50. I’m exhausted.

Sometimes I can push through it. It seems recently I can’t even get out of bed. I’m a competitive A Circuit Jumper, this whole laying around thing isn’t really conducive to training!

I also have an array of psych dx inculding Bi-Polar I and Anorexia and everything in between. I’m, for the most part, stable on my medications and in recovery, though I will say it is still taxing on my daily life.

All of this is making me depressed. I can’t seem to get out of bed. My joints ache, my brain hurts. I just want to unscrew the top of my head, lift my brain out, and dunk it in some water to wash it out! You know, how people put their dentures in the cleaning solution… yea I need that for my brain! haha.

Does anyone else deal with the EXTREME FATIGUE? I need to go to the doctors to see if there’s something else wrong, this isn’t normal tiredness, this is… my life is turned upside down tiredness. Tiredness that makes my bones ache, that make my muscles cramp, that makes me unable to form sentences.

Does anyone have CFS? If so, how did you go about going to your doctors? Do I need to have a list of questions for them? A list of my symptoms? Blahhhh.

I hope you all have a good Sunday. Just about to make breakfast here and then lay in bed some more… maybe I’ll force myself to take the dog to the park?

<3

[downen]

You are describing me before I got my diagnosis of Addison’s Disease (Adrenal Insufficiency). Seven years ago I could barely make it up a flight of stairs; now I am back to riding and caring for my horses.

I’m going to tell you right now if you are Addison’s, you are going to have a tough road to diagnosis, but if I were you, I’d push for it. Everything you describe fits. Here is a link with some preliminary information from the National Adrenal Disease Foundation: http://www.nadf.us/adrenal-diseases/addisons-disease/. Please don’t hesitate to PM if you have questions, and don’t stop fighting for a REAL (not a catchall like CFS) diagnosis.

[SugarRush]

Definitely see your doctor again. Have you told he/she about all these symptoms? Unfortunately I have to wonder about cardiac damage from past Anorexia.

Good luck to you, I hope you find some answers :yes:

[Trinket]

I have POTS as well, but mine is type 2 not type 1. (Pulse is super high, 150-190 just walking as well, BUT blood pressure is normal, or even slightly high. Commonly known as Hyper POTS, or Hyperadrenergic POTS)

POTS is NOT usually Primary (and even primary has a cause, it’s just not known yet, but recent research shows autoimmunity is highly suspect), it’s usually Secondary, it’s a symptom. (Technically, a cluster of symptoms commonly seen together, or syndrome)

FIND THE CAUSE. Do not settle for CFS or Fibro. Push push push. Something is wrong. Fatigue is a common symptom of POTS as well (almost always seen with it) and I know how depressing it is!

Look at this site for SOME of the causes of POTS: http://www.dysautonomiainternational.org/page.php?ID=150
You can read up on each, and match your symptoms, should give you an idea of what to discuss. SEE A SPECIALIST. That site has international doctors who know what the heck they’re talking about. There is only 2 in my area (ontario canada) both 3 hrs away…SO WORTH IT. He listens, and is open to all possible causes. We’re focusing on Autoimmune right now, due to my other symptoms and family history.

Feel free to PM me if you need, I FINALLY got doctors to look into it further (some doctors got fired and replaced in this process…), and we’re finally making progress after YEARS of depressing bodily failure.

Anything handled by the autonomic nervous system (anything your body is suppose to do automatically) can be affected.
BUT, focus on things that aren’t explained by POTS, those will give you a list of symptoms to start with.

Good luck!!

[TheBrownHorse]

Thank you all SO much

Trinket I will definitely PM you.

Calling the doctors as soon as they open tomorrow. Today was an ok day. Only took a short nap (2 hours) once, versus sleeping all day. But still, crappy overall.

Hopefully they can get me in tomorrow or Tuesday. I will update when I do see them!

For now, my brain is about spent. I would love to say more but cannot come up with the words

More soon <3

[HDuckie]

I have POTS as well, and have dealt with many emotional/mood disorders too. I am now recovered, but I did have anorexia b/p subtype two years ago. Are you still restricting? I know you said you were recovered but it can sneak up on us before we realize. Restricting made my POTS a living nightmare.
I also have Ehlers Danlos, which is a possible cause for POTS (no one is really sure if it causes it or not) but it would be smart to look up the symtoms to see if you have any. I am in the middle of genetic testing for type 4 which is the vascular type.
I haven’t been able to ride in 6 months My team of doctors and I are still searching for treatment for the POTS (and other symptoms) but it takes a while.
Have you ever tried florinef? It helps with keeping blood pressure stable. Also saline IV’s help me tremendously but they are hard to get.
Beta blockers are another medicine that is used for people with POTS, but for me it just caused me to pass out around the house! Not fun!!
Definitely find a good cardiologist to work with you. Although POTS itsnt a cardiac disorder, they’ll still cardiologists will still treat it.

[HDuckie]

Oh also, with the Ehlers Danlos, if you have any relatives with vascular aneurysms or weak arteries, please try to get in touch with a geneticist. I’m not trying to scare you or anything but I may have type 4 and two years ago all I thought I had was POTS. After MRIs I now know that I have a brain aneurysm and a pseudoaneurysm in my carotid artery. POTS is a common symptom in EDS, along with fatigue.
However, it’s a rare disorder, and I doubt you have anything to worry about.
Theres a facebook page I’m on called riding through chronic illnesses and disabilities that you could join!

[TheBrownHorse]

Thanks HDuckie!

I’ve tried florinef, an array of beta-blockers, salt tabs, IV infusions, have a supreme cardiologist at UCSF, I’ve tried it all (or most of it). Nothing is helping I was dx about 3/4 years ago, and all they’ve done is try me on this beta blocker, that beta blocker, midodrine, florinef, infusions, salt, yada yada yada it’s getting old!

My cardio in SF sent me to a specialist in Oregon who was NO help whatsoever. That was a couple years and things have gotten worse since that appointment. Probably time to look into finding someone else who specializes in it

I will join that FB group

[Trinket]

Sorry to hear about their need to try treatments without knowing the cause. Did they do ANY testing for causes?
I assume you’ve had the Tilt-table test at least? After that it’s pretty easy to rule out some causes (Thyroid, diabetes and per-diabeties, types of deficiencies (iron, b12, etc)) with a simple blood test. After those, some of them will need much more digging, again, once you know your other symptoms that should give you a start!

Beta-blockers did nothing for me (one of them gave me full body hives though!!), Drinking lots = more bathroom trips and no improvement. Salt was counter-indicated (it’s used only to help raise BP, mine is normal or high, so not good)… AND then they sorta gave up and said I’m not super bad (I’ve only fainted once! Yay?!) and just want to keep track of it.

I found that unacceptable, so I got a referral to a specialist. Now we’re getting somewhere! (It’s still slow, but at least he knows how debilitating this is, and that makes me feel confident in him!)

[TheBrownHorse]

[QUOTE=Trinket;8365333]
Sorry to hear about their need to try treatments without knowing the cause. Did they do ANY testing for causes?
I assume you’ve had the Tilt-table test at least? After that it’s pretty easy to rule out some causes (Thyroid, diabetes and per-diabeties, types of deficiencies (iron, b12, etc)) with a simple blood test. After those, some of them will need much more digging, again, once you know your other symptoms that should give you a start!

Beta-blockers did nothing for me (one of them gave me full body hives though!!), Drinking lots = more bathroom trips and no improvement. Salt was counter-indicated (it’s used only to help raise BP, mine is normal or high, so not good)… AND then they sorta gave up and said I’m not super bad (I’ve only fainted once! Yay?!) and just want to keep track of it.

I found that unacceptable, so I got a referral to a specialist. Now we’re getting somewhere! (It’s still slow, but at least he knows how debilitating this is, and that makes me feel confident in him!)[/QUOTE]

They did the poor man’s and decided that was enough information. Today, my laying bp was 125/78 with a p of 81, standing it was 89/55 p of 171. I can’t win. I can’t, actually, right now even sleep because my chest is pounding. But I can’t be upright, either, for fear of passing out

I was diagnosed at UCSF’s Pediatric Cardiology Department. You’d think they kind of know what to do!

Calling doctors (including mine, because I have an array of other things like thromboflebitis in my L leg, a possible broken wrist/hand, and my general overall sense of “not well” eg body aches, nausea, headaches, etc.)

I thought maybe I could get on and ride tomorrow. But, my lower back (kidney area) is throbbing, kinda like really bad period cramps without the period, my joints hurt to move, I’m a mess! I’m really tired of feeling this way

Ok, enough complaining. I just have no one who really “gets” it or takes it seriously. My parents are really supportive, but they have no clue how hard walking, even sitting! is for me right now.

[Trinket]

[QUOTE=TheBrownHorse;8365671]
They did the poor man’s and decided that was enough information. Today, my laying bp was 125/78 with a p of 81, standing it was 89/55 p of 171. I can’t win. I can’t, actually, right now even sleep because my chest is pounding. But I can’t be upright, either, for fear of passing out

I was diagnosed at UCSF’s Pediatric Cardiology Department. You’d think they kind of know what to do!

Calling doctors (including mine, because I have an array of other things like thromboflebitis in my L leg, a possible broken wrist/hand, and my general overall sense of “not well” eg body aches, nausea, headaches, etc.)

I thought maybe I could get on and ride tomorrow. But, my lower back (kidney area) is throbbing, kinda like really bad period cramps without the period, my joints hurt to move, I’m a mess! I’m really tired of feeling this way

Ok, enough complaining. I just have no one who really “gets” it or takes it seriously. My parents are really supportive, but they have no clue how hard walking, even sitting! is for me right now.[/QUOTE]

I totally understand the “not getting it” thing. Hard to explain that just getting out of my chair is like running a marathon some days (literally: drenched in sweat with a pulse that’s dangerously high!), and other days I can manage to get to the store or to the barn, but then I’m done, that’s it. No, I can’t go out to dinner, no I can’t even go up and get food (and I’m not even that hungry, I feel nauseous to some degree most days, and my head might explode). :no:

It gets better, mentally, after a while, you learn to cope (Sometimes with medication help too, I have depression pretty bad, and even though it’s better, there will always be hard times, especially when I’m house-bound!). It’s hard to fight with doctors for more testing, but try not to give up!

I’m “lucky” in that everyone in my family (DH included) has some invisible health issues. (DH has Mastocytosis, Mother has autoimmune, sister is Bi-Polar) For the most part, they all understand. :o

You need support groups! Tons on Facebook, and feel free to PM whenever needed. I can’t provide much medical advice, but I get the struggle, and I understand. :sadsmile:

[MustangSavvy]

I would just keep pushing your doctors, as others have said POTS is rarely a primary diagnosis. I decided a long time ago to just keep pushing and pushing, until I found someone who took me seriously. You know your body best.

“It does not matter what the doctors or test results or other people say. You know your body. You live in it. You know when something is wrong. Fight for that. Some people have gone years before doctors actually found the problem, and realized they were wrong. That will sadly continue to happen until modern medicine progresses further. But you have to fight for what you know, and no one knows it better than you”

I am suspected of having POTS and EDS, I see a geneticist in December. It is so frustrating and hard. I am always exhausted and I never feel quite right, even on the good days. My HR is all over the place and my BP is always super low. I had a echo on Friday and am still waiting for the results.

It has only been within the last three years that I’ve decided that, no matter how much I respect doctors (and my Dad is one), I would not let a doctor tell me that my experience was wrong. If one doctor did not believe me, I would find another doctor. I would not take any medications or have any procedures done that were not adequately explained to me. I began to insist that all of my questions be answered honestly and with care. I only have one life, one body, and one mind, and I cannot let someone else take control of any of it. I have to be my own advocate.
— Rev. Katie Norris,

There are a ton of support groups on FB and tumblr is also a great resource to find other spoonies.

Have you heard of the spoon theory?
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/