Back To The Er...again

[SarahA33]

Okay, I don't know about all of you, but I am sick and tired (pun intended) about having to go into the ER for 4 1 1/2 bags of fluids and IV Ativan and beta blocker. I took my midodrine,florinef and clonidine while I was there to.

Have any of you had ER experiences where they haven't wanted to dismiss you after you've been diagnosed w/ pots? I went in HR 177 and 11 hours later was 154/110 and HR of 130. The admitting dr said "I could never let you leave this hospital with a heart rate this high" and walked out. I thought, oh no .. He thankfully called my dr. and he told him "this is a chronic condition and if he kept me in til my HR fell below 130 I'd be moving in"

So I got to leave, WITHOUT a diagnosis I would have begged them to keep me in there, but with the hyper pots dx there is just no need after fluids are done.

[Psalm 23]

Hi Sarah,

I'm so sorry you've had to go through all of this. I know how incredibly frustrating it is dealing with doctors unfamiliar with our condition and how best to care for our special needs. It is remarkable that there are so few POTS/ Dysautonomia specialists out there. I hope your condition stabilizes soon.

Janet

[derekliz]

Why are you on midodrine and florinef if you have hypertensive episodes? Do you have low bp issues at all?

Liz

[derekliz]

Are you on any meds to lower hr/bp?

Liz

[SarahA33]

Thanks Janet. I appreciate the kind words. I think we're making our way to calmer waters but things seems to change so frequently. it is frustrating.

Hope you are hangin in there as well. I'll call you at the end of the week when things die down.

[SarahA33]

Hi Liz,

Many doctor's are cautious about putting their hyper pots patients on florinef and midodrine, but its not completely unheard of. I'm just lucky that I had doctors willing to bite the bullet. I made virtually no progress without either of those medications. I'm Diagnosed as Having Hyper Pots through certain levels in my blood/urine (catecholamine levels with serum norepinephrine) as well as a Tilt. Mornings are absolutely awful for me.. my body just goes into a panic overload. My pressures range from high 200's to low 90's and HR's usually are btw 130-170. It has to be the most challenging part about treating this. I began Florinef a year and a half ago. I take my last doses of florinef and midodrine 4 hours before I lay down at night so I don't increase my supine pressures. I take Propanalol, Clonodine, Ativan, Florinef, and Midodrine.

[Joann]

I just want to thank you for posting the information you have recently. I am getting closer to the hyper pots diagnosis. And the information you have given is very interestig to me.

For me I usually go to the ER and they keep me for a few hours. By lying down and getting saline or just the lying down and bp meds, my bp goes down, of course when I stand up it is bad, but they don't care about that. So they tell me I can go home, some will say we can keep you in observation for the night, but I usually just go home once I know it hasn't turned into an actual heart attack/stroke.

[SarahA33]

Joann,

I came on this site to find others who are in the "same boat" as I am. I've said it before, I no longer feel like I'm on an island. When I go to the ER for my BP/HR I rec'v 3-4 bags of saline and up to 4mg at various times of IV Ativan. Does the trick for me.

Who is diagnosing you with pots at the moment?

[Guest Alex]

Wow Sarah,

I usually complain about the exact opposite situation - my symptoms being dismissed when I go to the ER.

Have you ever been evaluated for IST (inappropriate sinus tachycardia) - that would seem reasonable given your "normal" resting heart is 130.

I honestly can't help but wonder about your dr's decision to opt for florinef and midodrine. I only had hypertensive episodes while on one or the other of these meds and like you I used to end up visiting the ER every couple of weeks because my BP and HR would skyrocket. I came off both of these drugs and now my BP is behaving....it's my HR that is still giving me a hard time. (I am not hyper POTS though- my standing NE levels were normal when checked in several instances.) I would honestly look for a second opinion if I were you.

Perhaps you've seen this article before, but just in case: http://www.ncbi.nlm.nih.gov/pubmed/21947988 (full text available by clicking on the white and blue rectangle in the right upper corner of the page). According to this florinef has "worked" in 25% of hyper POTS patients and midodrine in about 57%. It's true, the study has only included 27 patients, but I guess the numbers are still relevant.

Best of luck,

Alex

[SarahA33]

hey alex,

Yes I've been ruled in and out for virtually everything - including IST, which ive been told I have.

I actually have been signigicant improvement on the florinef and midodrine. Despite the ER setbacks (which have actually decreased... which is depressing because I still feel like im there a lot, lol) , over all I am much better off than I was before. This is the first time I've made real progress, I realized though that I might "rock the boat" by being on both the florinef and midodrine at the same time. I do not take either of them 4 hours before laying down so that I decrease the chance for supine HTN and also I take .2 Clonodine each dose of 10mg. Midodrine (Along with Ativan and propranolol) Its complex but it was set up that way. I appreciate very much the concern for a second opinion but I'm gonna stay put..

Wow Sarah,

I usually complain about the exact opposite situation - my symptoms being dismissed when I go to the ER.

Have you ever been evaluated for IST (inappropriate sinus tachycardia) - that would seem reasonable given your "normal" resting heart is 130.

I honestly can't help but wonder about your dr's decision to opt for florinef and midodrine. I only had hypertensive episodes while on one or the other of these meds and like you I used to end up visiting the ER every couple of weeks because my BP and HR would skyrocket. I came off both of these drugs and now my BP is behaving....it's my HR that is still giving me a hard time. (I am not hyper POTS though- my standing NE levels were normal when checked in several instances.) I would honestly look for a second opinion if I were you.

Perhaps you've seen this article before, but just in case: http://www.ncbi.nlm.nih.gov/pubmed/21947988 (full text available by clicking on the white and blue rectangle in the right upper corner of the page). According to this florinef has "worked" in 25% of hyper POTS patients and midodrine in about 57%. It's true, the study has only included 27 patients, but I guess the numbers are still relevant.

Best of luck,

Alex

[AshleyPooh]

Wow sarah I didn't realize hyper pots could be so horrible! A resting heart rate of 130s? That sounds insanely exhausting.I complain a lot because of the low blood pressure and high heart rate, but compared to you, my heart rate looks pretty good!

The midodrine at least might help keep your heart rate lower than it was before. I have noticed it keeping mine fairly in control, except for occasional episodes.

Have you tried other bp medications besides chlonidine? I know my mom is on metoporol? it seems to work decently well for her. I know not all bp meds work the same. When they tried to switch her to a different kind called Verapamil, her bp skyrocketed and she had to switch back to the other stuff. She's actually on two bp medications i think: metoporol ( which regulates heart rate more than anything) and Lisinopril. Sometimes it takes two

I hope you get some relief soon though, you're exhausting me just by thinking about it!

[okiedokie123]

Hey Sarah, may I ask how Clonidine is working for you? I really think I have ADHD and hey, what do you know, Clonidine works for it too! lol

[SarahA33]

Wow sarah I didn't realize hyper pots could be so horrible! A resting heart rate of 130s? That sounds insanely exhausting.I complain a lot because of the low blood pressure and high heart rate, but compared to you, my heart rate looks pretty good!

The midodrine at least might help keep your heart rate lower than it was before. I have noticed it keeping mine fairly in control, except for occasional episodes.

Have you tried other bp medications besides chlonidine? I know my mom is on metoporol? it seems to work decently well for her. I know not all bp meds work the same. When they tried to switch her to a different kind called Verapamil, her bp skyrocketed and she had to switch back to the other stuff. She's actually on two bp medications i think: metoporol ( which regulates heart rate more than anything) and Lisinopril. Sometimes it takes two

I hope you get some relief soon though, you're exhausting me just by thinking about it!

Hey Ashley,

Thanks for the kind words and thoughts. The truth is that I really should be exhausted, but I'm not.. not physically, anyway. Mentally sometimes I wish I could just "shut down" because I'm always thinking about something. Im like the Energizer bunny

I've been on Verapamil (Calan) which is the totally wrong kind of BP med for me, and also Topril in the past.. they didn't work well for me. I tried them for about a few months but didnt experience a reduction in pressures like I have with Clonodine, and Propanalol. You are corrrect, the midodrine has lessened my BPMs along with the beta blocker, clonodine, and ativan.

I also experience lower pressures sometimes so I can relate in a sense and I give you a lot of credit. It's incredibily challenging to have a low bp because of how symptomatic you can get. Howe are your numbers running lately? Hope you are doing well. Thanks for the medication suggestions.. I appreciate you taking the time to list them out for me.

Sarah

[SarahA33]

Hey Sarah, may I ask how Clonidine is working for you? I really think I have ADHD and hey, what do you know, Clonidine works for it too! lol

I LOVE your POTS goal checklist. I think those are awesome goals. I have had to be careful of long term goal setting with my Type A personality, because when I wasnt able to reach them I was incredibly hard on myself. I still am. Short term goal setting has been really helpful for me, though.

Clonodine is really helpful in reducing my BP and it has an effect on lowering my hr as well. I had no idea it is used in ADHD too, but am not suprised. It's got a lot of great benefits... However, in the beginning I did have a lot of really negative side effects and hated it. I still have a little bit of dry mouth but that's so tolorable and not even worth complaining about. Are you on the pill form? I know the patch can be a really good option for some people too.

[okiedokie123]

Hey Sarah, may I ask how Clonidine is working for you? I really think I have ADHD and hey, what do you know, Clonidine works for it too! lol

Hi there!

First of all, I LOVE your POTS goal checklist. I think those are awesome goals. I have had to be careful of long term goal setting with my Type A personality, because when I wasnt able to reach them I was incredibly hard on myself. I still am. Short term goal setting has been really helpful for me, though. I also think it's super important to have a positive mental outlook on this disease as it can be really frustrating and difficult to navigate through. This site has been really great for me as I've been able to identify with others for the first time since i got sick almost 7 years ago now.

Clonodine is really helpful in reducing my BP and it has an effect on lowering my hr as well. I had no idea it is used in ADHD too, but am not suprised. It's got a lot of great benefits... However, in the beginning I did have a lot of really negative side effects and hated it. I still have a little bit of dry mouth but that's so tolorable and not even worth complaining about. Are you on the pill form? I know the patch can be a really good option for some people too.

Thanks Sarah! I also think that society, comparisons, and peer pressure around us are factors in what makes us work hard to achieve some sort of success and be harder on ourselves when we fail. There is so much "rushing" and the "NOW" factor going on around us. Definitely not good on our mind and body! I think it's really important for folks like us to just take it easy and pace ourselves in a relaxed, carefree manner. Dysautonomia does set us back, but we have a lifetime to reach our goals.

I haven't gotten a hold of Clonidine yet but I will definitely add it to my list and see if it works. It's all trial-and-error for alot of us.

[SarahA33]

Okiedokie,

Are you diagnosed with hyper pots? I was wondering what your numbers (BP and HR) typically run if you are thinking of adding clonidine to your regimen?

Are you currently in nursing school? What a great nurse that you'll end up being. You will have empathy for your patients and what they are going through and you'll advocate for them! I guess I think its important that I find all the lessons I can..i assume by what you've said that you think along the same lines.

[okiedokie123]

I'm quite fond of the nickname "okie" that I've been called on this forum lately. Ah, I really wanted to hide my gender lol.. My name is Justin. On another forum, the name "okiedokie" was mistaken as a girl so I wanted to see if anyone here thought that a picture of my nursing class + "okiedokie" = girl. I guess I am now exposed.

I have a semi diagnosis of POTS. I say semi because I lack insurance atm and have not done a tilt table, but the doc 99% believes it to be a form of POTS. I'll find out in the next coming weeks or months with proper diagnosis and treatment. My systolic BP went from 120-130 sitting to high 150ish standing when I tested myself at clinicals. HR went from 80 to 120. That's insane.

Thanks for the kind words! I actually graduated nursing school already but failed my license exam recently because of the usual - brain fog, insomnia, huge anxiety. That trio alone is horrible on any exam! So hopefully I can pass the 2nd time! And I really do think this disease will mold us into stronger, better individuals in the long run. Your experiences with the ER, my failure at my exam, others who are frustrated with the setbacks of this dysautonomia - it's all a testament to our strength and perseverance. In other words, we're one bunch of tough cookies and we never try to give up!

[spinner]

Wow, thats tough. Ive been to ER more times than for the entire rest of my life for everything else.

I suffer from the opposite, low HR, bradycardia.

I carry a pulsometer. I use salt to speed it up at times.

On the plus side, it you go into ER with a pulse around 50 or lower you go right in.

I hope they can find a way to manage you so that you can avoid this. The ER is not a place for

any diagnoses. They just stabilize you basically. Most doctors know dysautonomia but they really

dont know how to treat it unless you get a neurologist on staff there.

We all seem to suffer through the summer here. October is my best friend.

[SarahA33]

Okie...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/table/T1/

please take a look at this.. it's the diagnostic criteria for diagnosing POTS. During your clinics I think you were very smart to test your orthostatic responses w/ hr's.. do you happen to know what you normally run with your pressures supine and standing also? a 40 point jump is significant. Also.. id think Vandy requires ins. to be seen -- but have you thought about applying for any of their research studies? I'm not sure how much of an expense that would be for you out of pocket.

We are all a bunch of tough cookies. I wish I never got sick, but truly I would be a different person if I hadn't. Things that used to bother me no longer do because I have a different perspective.

[SarahA33]

Spinner, summer's stink.. My doctor suggested moving to a place like Alaska! he was half kidding! I'm in buffalo, so it's like Alaska weather half the year, lol.

okay, so I get the same treatment when you have a HR of 50, I go in with a HR of 200 in triage at the ER, tachy. . He had no idea about hyper POTS but truthfully, many doctors don't. it's so unfortunate, have you come across that in your journey too?

[spinner]

Sarah, the thing of it is, from what i know not everyone has classic POTS. I tell physicians i have dysautonomia which i describe as uncontrolled automatic nervous system issues. Grubbs calls it like having a perfectly functioning

furnace but a faulty thermostat from what i hear.

I tell other people now that i have a neurological disease where my involuntary cardic and respiration are not controlled.

As far as heat, if youre in buffalo be thankful. Mainly because the summers are short. You can function in the other 9 months but summer is scary. My worst fear is getting stuck in a traffic jam without air condtioning because within 5 minutes of overheating i get pre syncope. I would become very sick very fast.

DA is incredibly infuriating because it seems symptoms change overnight. This whole heat thing was never as bad as this year. If its over 72 degrees or 60 percent humid i cannot function. Unless theres a good bit of air moving.

The ironic part of this is that in winter people blast natural gas heat indoors and that saps me as bad as the sun.

I spend the summer inside and the winter outside.

Im currently experimenting with DHEA and potassium. It seems to help some but doesnt eliminate heat

intolerance.

I also swim which cools my core temp down. Doctors dont seem to understand that its NOT your base temp

that matters with DA-----its your organ temps.

[okiedokie123]

Wow Sarah, that's impressive! I am the same, hate failing, it gives me a mental breakdown everytime, but we have to learn to accept those failures, that we do have a disability that holds us back. Not to say we should use it as an excuse, but simply to understand there's something that may be contributing to our failures that other people don't have. If you ever decide to go into LPN school again, please look into Disability Accommodations at your school, they will sort things out and make reasonable accommodations in clinical and theory lecture. I did not take advantage of that until my very last semester, wish I knew before!

I don't keep a record of my standing and supine BP/HR but generally have a good idea of what I have. I do have an appointment coming up so I'll bring that up to the Doc. Thanks for the information about not needing to do the Tilt Table "torture test" for diagnosis and about the Vandy research studies. I live in Houston where the Texas Medical Center is, and the Baylor Clinic is the one that handles special medical cases from what I've found. They recently received a $1million grant for research into EDS so I'm hoping this will jumpstart more research into the direction of autonomic dysfunction. I have met a few local POTsies from the Dinet Meet Others Program and have found that we really need more dysautonomia specialists out here in Houston. If not, I'll definitely look into Vanderbilt. I'm willing to shell out thousands of dollars if it means I could ease the symptoms that I have.

That's a good way of putting things into perspective and I'll keep that in mind, never really thought of it that way. I guess we could be a little more grateful.

[SarahA33]

Okie, check your PM

Thanks SO much for the idea of looking into the disability program at the LPN school. I'd love to go back and do it but I work during the day and it would require night classes that would result in a total burnout for me.

I really do wish you much success!!

How far are you from Dallas?

One month will fly by and your appt will be here before you know It!

[SarahA33]

Spinner,

"I tell other people now that i have a neurological disease where my involuntary cardiac and respiration are not controlled"

I tell them the same thing except that my blood pools in my abdomen and feet and doesn't circulate". then if they are still confused, I simplify it by saying "Picture sprinting but having your heart rate START where it would END in a sprint as soon as you stand up". Sometimes I think they just nod their head like they understand but I can tell they don't. This has been discussed a lot on this site, but I think the main reason people only half listen to me Is because I don't always look sick. Its really annoying,

"As far as heat, if youre in buffalo be thankful. Mainly because the summers are short. You can function in the other 9 months but summer is scary"

"Actually it starts in May and sometimes lasts until October so sometimes its half of the year where my symptoms are at their peak. My worst fear is getting stuck in a traffic jam without air conditoning because within 5 minutes of overheating i get pre syncope. I would become very sick very fast."

Where are you located? Yes, I think you've got an incredibly valid fear. I hope you have air in your car and central air at your house or atleast a cooling system that works best for you...standing in lines scare me the most. I'm always afraid it'll result in "MAN DOWN" (which in fact, it actually has)

"Im currently experimenting with DHEA and potassium. It seems to help some but doesnt eliminate heat intolerance." Have you thought about talking to your dr about mestinon or thermatabs (which are OTC) to help w/ the thermoregulatory system?

I also swim which cools my core temp down. Doctors dont seem to understand that its NOT your base temp

that matters with DA-----its your organ temps.

[okiedokie123]

I'm actually seeing a regular PCP who's going to refer me to a neurologist the same day but right now, I don't know if they have a specialty in dysautonomia. I've been busy with my schedule so I just hope the appointment gets me somewhere. There's got to be some sort of help out in TMC or Baylor. I know some Dinet members said there's not much help here from the threads I searched. I'm about a 3 hour drive (240 mi) from Dallas. Are you thinking of Dr. Levine?