bebe127

Just wondering if there are any doctors on this forum. I realize that if there are, they cannot advise as that would open them up to liability. I guess I'm asking if there are any doctors that might give any insight as to what POTS is all about and possibly explain the ANS system to us?

I feel like I say “I’m sorry” an inordinate amount of times. Usually it’s daily and multiple times. I feel worse that my husband and children have to put up with it. For that, I’m sorry. See??? It has now become habit. I’m sorry for this, sorry for that, sorry I feel like crap every day, sorry I can’t change things, sorry I can’t do things, sorry I can’t cook, sorry, sorry, sorry!!! I’m just plain SORRY literally and figuratively.

Saying I’m sorry doesn’t change anything, it doesn’t even make me feel the slightest bit better, in fact, many times it makes me feel worse. It just reminds me of all the things in my life that this illness has stolen from me.

I get so tired of saying “I’m sorry” to my husband and I’m fairly certain that he is equally tired of hearing me say it, although he would never admit such a thing to me. His response is always “you have nothing to be sorry for.” Yet, I’m still sorry. I should probably hang a sign around my neck with big red letters that read “I’M SORRY!!”

Sorry,

Bebe

I think just recently there was a post on this. I have visual problems too. I have floaters, which have gotten worse in the last few months. I recently needed reading glasses since I can't see close up. Dr. said it was my age (43). I often have vision problems that are hard to explain. Wish I knew more or could get some dr. to understand. Sometimes I feel as though my eyes aren't working with my brain, don't know if that makes any sense. Hope you find some solutions.

Jeopardy* My keyboard isn't working too well, or at least that's my story and I'm sticking to it!

I actually went to an EP that was supposed to be an expert in POTS and he asked me what I do for a living. I told him, I'm a stay-at-home mom and I homeschool my two teenagers. He had the nerve to say..."well, that's pretty stressful". As if staying home and homeschooling my gems was stressfull enough to contribute to my illness!!! Dr.s can be so insensitive!!! Even though I wouldn't wish this illness on anyone, sometimes I can't help but wish that some of these dr.s could live just one day in our shoes (albeit, they probably couldn't even make it through a day), that way they could see just what we go through on a daily basis.

BTW, my gems are brilliant (maybe I'm a bit biased), but they have always scored high on tests and my oldest is now a junior in high school and taking college courses via dual enrollment!! I'm fairly certain they could pass any Jay Leno quiz as well as being awesome when we play Jeopary on the Wii. That has to account for something!! LOL!

Also, we so need to heed the rules of the forum as per Rachel as I (and many others I'm sure) need this forum to stay active and not get in the crosshairs. I am truly sorry for your experience Ashelton80!

So sorry for your experience Ashelton80! It takes hours sometimes when I go into see my GP for an appointment. I give my cell number to the receptionist and tell her to call me when they are ready for me as I go recline in the hubby's truck. I also always call ahead of time to see if the dr. is on time. I explain to them that with my condition, I just cannot sit upright for hours waiting to be seen. They are always accommodating and I can relax in the truck until they are ready to see me. Again, sorry to hear of your experience.

Good on you!!!

One of my friend's daughters chewed ice all the time and it was supposedly because of an iron deficiency. Although if yours checked out ok, then I don't know what to tell you. My daughter takes an iron supplement because of anemia, although she doesn't chew ice. I, myself years ago was anemic and I don't even use ice, drives my hubby nuts! He doesn't understand how I can drink fluid at room temp. Go figure??? No two people are the same, and good thing too, or our world would be quite boring Hope you find out your cause, maybe see if you're deficient in any other vitamins?

Kalamazoo,

As I'm sure you already know, always check with your dr. before trying anything. I agree with SeattleRain about the water; drink plenty of it. Don't know about the other, but would be willing to try the next time I am sick.

I have always been told to stay away from OTC cold remedies as they can have an affect on blood pressure and of course if you are on any other kind of meds, it wouldn't hurt to check with dr. or pharmacist for any drug interactions. I was told that I could take Mucinex if needed as that doesn't mess with BP (again, I would always check with your dr. first)

Hope you get to feeling better soon Drink plenty of water!!!!

Megsmit6,

I also concur with Alex and SeattleRain.

An electrophysiologist is a specialist in cardiology. However, just because they are a specialist in cardiology doesn't necessarily make them a specialist in POTS or Dysautonomia. I've seen two EP's and I'm fixin' to see a third. The first one was my dx dr., however admitted that he didn't know much about the syndrome and didn't know of any dr.s that treated it. The second EP (I was referred by a friend that is a dr. and this EP was 1.5 hours away in the next county) was supposed to be a "specialist in POTS", he unfortunately turned out to be a bust and told me I needed to see someone closer to home, that he couldn't help me and suggested I see a psychologist. The third, I have yet to see, but hope to see in the Spring. He was referred by a friend who's daughter was dx with Dysautonomia and my friend has worked with this particular EP in the ER and the EP is supposed to know about Dysautonomia. I'll have to see what my future holds.

I agree with Seattle on the issue of the importance of a dr. being willing to listen and work with you and not necessarily being an expert in POTS, although if they truly are; that's a bonus

Hope you find some answers and relief soon.

Hi Seattle,

I don't have any advice (sorry), I can only relate my experience with the TTT. I told you on the "Adrenaline Rush" thread that my BP actually increased along with a +80 HR increase. I was fully tilted to upright. I have never had blood pooling, so maybe that is why they tilted me all the way up, or maybe different dr.s do the test differently. Also, the dr. shot me up with something (don't remember the name) so as to stop an arrythmia if I had one and it just made me feel worse. I had the test done three times as the first time they tilted me the dr. went out of the room because he said that "this could take some time, most people don't react for about 20 minutes". Well, I reacted within 3 minutes. He then came back in and repeated the test to see if I would have the same reaction...I did. The third time is when he shot me up with the medicine. Each time, about 2 minutes in, I could feel the "attack" coming on and I would say, "It's coming, It's COMING, IT"S COMING, IT"S HERE!!!!" I started crying and getting all freaked out. They would put me back down and within about 5 minutes, everything was pretty much back to "normal". The last time, when he gave me the medicine, I thought I would die. I was crying, freaking out and felt as if I couldn't breathe. I can't remember what he did after that other than to put me back down. I was exhausted after the test and all I wanted to do was sleep. My husband was with me when the dr. came into the room post test and told me that I "probably have POTS". He told me that the only medicine for this was florinef, which now I know is not the case. Anywho, he said he couldn't/wouldn't put me on that because it is supposed to raise blood pressure and since mine was already elavated, putting me on the meds. could give me hypertension. His advice, and this is a direct quote: "Eat more salt, drink more water, and go live a normal life." This from an electrophysiologist.

I am on a beta blocker (and Xanax for anxiety) now and it seems to work as it is intended although, I still experience tachy almost daily and my bp still fluctuates. These were prescribed by my GP, a dr. I began going to a year or so after my dx. I can function a bit better now, but I'm not sure if this is because of the meds, or that I'm just used to the symptoms now, or that I've just found my "new normal". Everyone is different as far as meds go. I know that a friend's teenage daughter was just diagnosed with Dysautonomia and put on Alpha Blockers and is doing much better. I think it all depends on how your vitals react.

As far as getting blood drawn, I too have issues with this. Sometimes they can't find the vein, other times my blood just drips into the tube. In my case, I think it has to do with dehydration. A few days after I last had blood drawn, I looked as if I had been abused. I had bruises on both inner elbows that nearly took up the entire width of my arm. I even had a bruise on one arm that was inches away from the needle site and about 3in. long and 2in. wide.

I hate it when dr.s say they just want to treat the symptoms! Maybe WE want to get to the bottom of this whole thing. Find out what is causing it. It so often seems as though dr.s put us into their little box and if it is not in their med books then they just try to treat the symptoms. I do think that treating the symptoms is important to some extent, so that we might get some bit of relief even if temporarily, but I think it is important to find a dr. that will continue to work with you in trying to figure out the root cause and try to treat that.

I do hope you have dr.s that will work with you to find out what is wrong exactly. It is so hard and frustrating I know, but try to keep going. You seem like the kind of person that is not going to give up and that is such a good thing. I wish you all the luck in getting results and finding relief!!

Be well

Abby, it seems as though a lot of us experience this. I don't like it either! These just started for me, I hope they stop soon.

SeattleRain,

Thanks for your response. When I went to a therapist a while back, she had me get a book called "The Anxiety & Phobia Workbook" by Bourne. Now that I've had these for a week and a half , sadly I'm getting kinda used to them. Every morning around 6am I wake with an internal shakey (thanks Abby) feeling. I don't really have the impending doom feeling any more. I think I only had that the few mornings as I had no idea what was happening and I was kind of freaking out. It's so hard to explain how I am feeling other than to say it is weird. I don't have (while this is going on) chest pain, or any of the other symptoms for panic other than the shakey feeling. My vitals all seem fine. I've had POTS for 3+ years and I don't ever remember feeling like this.

Maybe its just that my schedule has changed recently and I went from hardly driving and going anywhere to having to drive on a daily basis. Maybe I'm a bit panicky and nervous because of that and my mind and body just have to get used to the new changes. That's what I'm hoping anyway.

I've been on Celexa (SSRI) before and didn't tolerate it at all. It was a horrible experience, one that I wouldn't wish on anyone. BTW, do you (or anyone else) know if a dr. can find out what our adrenaline, cortisol, NE and the like hormone levels are through blood tests or something else?

I do try to stay hydrated, but must admit that I haven't been drinking as much water as I should. I will try to drink a lot more and see if that helps at all.

Was that your first TTT? When I had mine and they were repeating it for the third time (UGH), the dr. shot me with something (I can't remember what), it was supposed to stop an arrythmia, if I indeed had one. It made me feel so much worse and it didn't stop what was going on, so I guess I don't have an arrythmia. On top of elevated BP and a HR that went from low 70's to 150+ within three minutes of standing, I felt as though I couldn't breathe, it was horrible. Can't remember how they got it to stop other than putting me back down.

Hope you find some answers and relief for yourself soon!

Thanks again!!

Great description Canadiangirl! Anxiety is such an issue for many of us it seems and since our ANS is out of whack, it doen't automatically "fix" these responses like it does with an otherwise healthy person. Anxiety doesn't cause POTS, POTS exaserbates anxiety. Unfortunately all that can be done, so it seems, is to treat it with antianxiety meds. I am on Xanax and sometimes I have to double up on a dose if I know I am going to be extra nervous like when I have to drive somewhere. Sometimes it can just come out of nowhere, in which case I try to lie down and relax and go to my "happy place" and wait however impatiently for it to pass.

So sorry you are feeling like this. I know it is hard and quite frustrating at times. You are just beginning this journey and it will take time to figure out your body and its responses. Try to be patient (much easier said than done). I do hope you get to feeling better soon.

Thanks everyone! I do have a BP cuff and I do keep records of my BP (I have 3+ years worth!). I was just wondering if there was such a thing as a Holter monitor only for BP so that the results could be sent to a Cardio or EP, like the heart monitor does. When I see the dr. I always take in my notebooks and he does give them a glance, but it would be nice if we could just be monitored like the Holter. I might go in to see a new EP this spring and ask him if there is such a thing. At the moment I don't even have a regular cardiologist as there are none in my area that know about POTS. I just recently found out about this new EP through a friend's husband (he is a firefighter/EMT and used to work in the ER) who's daughter was just diagnosed with Dysautonomia. She was born with a heart block and has a pace maker, but was just recently dx with Dys. Anywho, hopefully I'll get into see him in the near future.

Again, thank you all for your responses!

Do any of you know if there is a BP monitor similar to a Holter monitor (keeps track of HR) that one can get from an EP? I did have a Holter monitor 3+ years ago for 21 days that didn't really show anything significant other than a speedy HR at times. The dr. ruled out any arrythmias and the like.

My BP seems to be all over the place. When I started on this journey 3+ years ago, I was having issues with high blood pressure. Most of the time now, my vitals are relatively normal (120's-130's/80's-90's), but I am still symptomatic. Recently, my bp has been lower than usual (90's/70's). Just wondering if there is a way for a dr. to keep track of my BP regularly over days to see if there is anything we can find out to better regulate it.

Thanks,

Bebe

Allomenteer,

My shaking is more on the inside, if that makes any sense, although this am when I was reaching for my BP monitor, my hand was shaking. Don't know about my temp. I do know that I don't like this feeling, it's just a weird feeling that I can't really explain. I've thought that it kind of feels like a panic attack, but my HR is not up and I'm not hyperventalating either. It's just weird and I don't really remember feeling like this in the past.

I have been reading about some people that experience "adrenaline rushes" on here lately. I was wondering if you could describe what you are feeling when you have them?

For the last week I have been awakened out of a deep sleep feeling really weird. I just feel shakey all over with this impending sense of doom. The first time it happened last week, I freaked out. The subsequent times, I didn't freak out so much, but they continue to happen. This morning, I took my vitals and all seeemed normal, BP 117/76 HR 55. When this is happening, I'm not sweating, my heart is not racing, I don't feel flushed or anything, just this weird feeling and being frightened.

I have been a lot more busy lately, maybe I'm over doing it and I just need to wait for my body to adjust to my new schedule? Maybe I'm just anxious with all the new activity?? Hoping for any insight.

Thanks,

Bebe

Have you heard of Beverly Lewis? She writes about the Amish. They are easy reads and interesting as well. When I'm not feeling too well, I, like you don't want anything too heavy.

I know it is hard, but try not to worry. Anxiety just makes you feel worse. When I had my TTT the dr. wasn't even in the room the first time. He told me that most people don't respond for about 20 min. I proved him wrong. They stood me up and within 3 minutes, my heart rate was up to 150+. I could feel it coming on and told the nurse, "IT'S COMING!!!" Once the dr. came in and saw the tapes, they immediately put me down and within minutes all vitals returned to normal. He repeated the test two more times, each with the same result. My BP actually went up and I did not faint.

Like many have already said on here, hopefully, at least you will know what's what when it is over. I don't recall feeling better or worse after mine, just really tired. Like Spinny said too, make sure you have someone going with you to drive as well as for support.

You will be okay. I will be thinking about you and praying

Bebe

Richest blessings to you Pumpkin

I hope someone can help you understand this and in turn help me as well. My vitals seem fine one day, yet I feel poor. The next day my BP is lower than usual and HR higher and I still feel poor. The next day my BP is on the higher side with increased HR and I still feel poor. In conclusion, it doesn't really seem to matter what my vitals are, I still feel poorly. I just don't get it. I am on a BB that seems to help somewhat, but my vitals are still all over the place day to day and I just can't seem to get a handle on it.

BTW, MomtoGiuliana, how does a dr. check for low blood volume? I've never had this checked and no dr. has even ever suggested that I get tested for it.

Another question...can someone explain pulse pressure and its significance, if there is any?

Thanks!

Hoping you feel better soon Achilles

I have floaters too. I went to my eye dr. recently and he gave me some technical term for it and explained why, didn't really help though. I also have (what I consider) a rather quick onset of farsightedness, where I need reading glasses now. Eye dr. told me it was just my age. Didn't really flinch or ask questions when I mentioned I had POTS. Still not really convinced that it is my age and wonder if it has something to do with the POTS and/or a side effect to meds. I have read that there are special eye doctors, opthamologists maybe that can actually tell a whole slew of medical issues just from looking into our eyes ie: high blood pressure, diabetes, etc. I personally have never come across any article about floaters being POTS related. If anyone has, please share. I have had these since I was little, although must confess that they have gotten worse since my dx. Oh, the mysteries of this syndrome!!

I agree with your Dr. Katybug. My hubs always says, "It's good to know what you know, but even better when you know what you don't know." So wise...my hubs! It is only when we are aware and accept what we don't know, that we can adjust our path to finding out and the "not known" may become "known". I wish all doctors were aware of this. In the wordage of Yoda...wise doctor, you have

Terradactyl,

As you wil read on here quite often, everyone is different. In my case, I was told to increase my salt/water as well. Personally, it didn't help me at all and in fact led to some hypertension. I have tried extra salt on foods, Gatorade, and salt tablets. When I was dx. the dr. told me that he couldn't/wouldn't prescribe (what he considered the "only" medication to treat POTS) Florinef as my bp didn't drop significantly but increased during the TTT and I could experience hypertension as a result of taking the meds. So he told me to increase my salt??? Anywho, I had a bout with hypertension (not sure if it was salt induced as I had had been dx with hypertension before being dx with POTS) and am now on BB's prescribed by my GP and doing better. BTW, I don't faint.

It is my understanding that by increasing salt intake, it helps to retain fluid which in turn increases our blood volume (always research and ask your dr.)

Hope you get some answers and relief