erikainorlando

I don't go back to see him until May 1st. It is really a problem tho....I really need to take the BB or something otherwise I have such tachycardia on standing...and certainly any movement. The Beta blockers are great but can really bring it down too low on when lying down. Are the BB's supposed to equal it out so that it is always somewhere around 80..??? That is just not the case with me.

Thanks!

Hi

The most recent post on BB caught my attention. I really have done pretty well overall on BB. I don't seem to have the BP part of this only the HR. Without BB back in Dec/Jan my hr was ging to almost 190 etc...everytime I stood or moved. The BB was like a wonderful relief. However, what I have noticed on them (and I may be getting somewhat better) is that if I get my HR closer to normal 90/100 standing (with BB) then when I sit my HR is like 60 then when I lay down like at night it can get very low...50...then I really feel like I am struggling for air. I feel just awful when my HR is real low.

Does anyone else have this problem with BB's? I just can't seem to find the balance here. It is either tachycardia...hard to wlk etc....or on BB sometimes a different problem....too low HR when sitting/laying. Also...my HR is soooooooo variable. I think I am more aware of my heart when the HR is low....it is very uncomfortable for me.

Any input????

Thanks guys!!!

Erika

Hi.

I am not sure but I will tell you that I have never been much of a "sweater"but I find that the littlest amount of activity will make me very hot and perspire now. I hate it...and I have noticed a very big difference in my tempurature regulation for what it is worth.

Erika

Hi there.

Sorry to hear you are feeling this way. I am pretty new here too but I believe that brain fog is a symptom of POTS. I think somewhere I heard that it was from the lack of blood to our brain...sometimes I can't think of words and say the wrong word...I don't worry about it......sometimes I think it is just because I feel so awful that I can't even think!!

I too get what feels something like anxiety but it is not...or it isn't until the overwheming shakiness and aderline surge (what it feels like) starts worring me. I feel like my breathing and hr are not not (well, and may times thre are not!!) .......it starts to scare me sometimes...

Thanks for the post...it is nice to identify........

Erika

Thank you all!!

I have always been a person who can push thru anything....but pushing thru this I get sooooooooooooo sick. I am so glad to have all your input ... and also to know I am not the only one going thru this.......

:

Erika

Hi.

I was talking at one point to a fellow who said we needed to "retrain" our autonomic nervous system so we should try as best we can to keep as active as possible. I have POTS but my hr is pretty manageable on toprol...altho I still feel very crummy!

I really try to do this but some things I really can't do....i did some vacuming the other day and then started with the diareha, had to lay down...etc. I feel just awful when I really push myself. it is like a backlash of sorts; I feel ok so I reallly push and then am so sick I can't function.

What is the thoght on how much activity we should try to do? This really doesn't feel like building stamina....is that what we should try to do?

Thanks,

Erika

Hi.

Just wanted to add that I had a virus in Sept and was diagnosed in March with POTS. I am 45 (feeling more like 105 at times these days............just kidding...sort of).

Good luck...

Erika

Hmmmmm. Well, if you experience a racing heart and you had a sinus tachycardia during your TTT, then that sounds like POTS. When the cardio doctors tell you they can't find anything wrong, what they mean is that there's nothing STRUCTURALLY wrong with your heart and no dangerous arrythmias, which is good -- they don't mean "there's nothing wrong" as in "everything's normal." If you had something structurally wrong with your heart, you probably wouldn't have autonomic dysfunction, you'd have a heart condition. So even though those messages sound conflicting, what you've described with your TTT and loop recorder sounds like POTS.

If this has started happening recently, perhaps you just have periods of time when your body doesn't experience these symptoms, and that would explain your normal readings at the doc's. Perhaps you experience tachycardia after standing for longer than three minutes, too, which wouldn't be uncommon for POTS.

"Just tachycardia" can make a person feel pretty lousy. I have POTS, and as far as my cardio is concerned, I "just" have sinus tachycardia upon standing. But that tachycardia means I'm exhausted all the time, I have difficulty doing my job, and I have a constellation of other autonomic problems not related to my heart rate (insomnia, difficulty digesting, excessive thirst, exhaustion, chronic pain). So, again, when they say "just tachycardia," probably what they really mean is "phew, you're not about to have a heart attack" -- they probably don't mean there's nothing wrong with you. It's all relative. Sometimes, with POTS, doctors are happy to rule out really dangerous conditions since POTS symptoms look a lot like life-threatening heart disease.

But, there are treatments for POTS that should hopefully help with the fainting and with the feeling yucky. If your doctors decide on that diagnosis, the next step should be to find things that help you. It's not like they're going to say, "Oh well, just a little tachycardia," and send you home with no help. Unless they're crummy doctors, which is very possible, in which case you'd need to find a new one.

Hi.

I just wanted to say a big "THANK YOU"!!! It was very validating to again hear the "Just tachycarida" can make a person feel pretty lousy!!! I am so debilitated. Even on the toprol which pretty much keeps my hr normal...I still feel very lousy!!!

Can I ask what kind of chronic pain do you have? I havfe had a lot of pain with this. My muscles ache at times and my joints hurt. That is in addition to the chronic terrible chest pain I have. Basically.....I feel many times like I have been run over by a bus!

Obviously I am not trying to win the"ain't it awful" award but it is just so nice to be validated. It is almost as if you can survive anything if you have compassion and support.

Thanks again ...I needed to read that tonite.

Erika

Hi.

I have to agree with Flop.....my EP told me to stop taking my toprol 2 days prior to my TTT. I thought I would die. But he told me that the test results would be altered if I was taking the toprol

Althoug, my hr still rising almost 30 points on the toprol when standing be can be within mormal limits. Say lying down it would be 55 and standing 85. Off the toprol it would be say 85 lying down and 140 standing. For wahtever that is worth!!

Anyway, I hope you find your answer. It is really awful to feel so bad and not really know what is going on or worse yet to be told that there is nothing wrong!! For 2 months my PCP told me that there was nothing wrong....(kept taking my hr when I was sitting). She told me to go to a therapist. I told her I would love to go but I was just too sick to drive!!!!

Good Luck!!

Erika

Thank you!! I have been trying to go back in my mind when I have the worst episodes Again....I think it is linked to the amount of activity I have done.

You guys are great. Does anynoe know why this happens??

I am a little embarrassed asking but....

I was recently diagnosed with POTS. Some days are better than others...when I do activity like this morning I cleaned my bathroom, later I needed to spend the afternoon in bed and in the middle I had to run to the bathroom and go # 2. I had to run to the bathroom for this about 4 times before it finally stopped. This happens a lot and usually after activity when I am feeling just soooo sick/whiped out/weak etc. Before POTS I was constipated a lot but now all this has changed. Does anyone else get this?

Thanks............

Erika

I had a virus in Sept. Not a very bad virus but took many many antibiotics. I never felt right after the virus. I was miss diagnosed for months and kept getting worse and worse. In Jan I finally got to where I couldn't walk and they noticed the tachycardia. Finally in Feb. a great EP said...I know what this is. We did a TTT and confirmed it.

Good topic..thanks

Erika

Thank you!

Yes, they did all the basic blood work. Thyroid is fine. Someone amenic and iron defiency...but I am thinking that I was running around wiht a hr of 180+

for about 6 months before anyone really figured it out so I think that may have messed me up. I lost a lot of weight and wasn't able to eat. We all just missed the hr because they would always take it when I was sitting and then it was around 100. I didn't feel the hr I just felt like I couldn't breathe....

I have Guillain Barre in 2001. I never in a illioin year thought I would have to be sick again especially with something my neurologist seems so lost about. I just was wondering if there are special tests to deterime they cause (on the dinet.org causes page). I was thinking/hoping if they can find the casue then they can fix it??????????????????????

You all seem so knowledgeable....I will read more on the info pages.

Thanks again.

Erika

Hi.

I apolgize ahead of time if this is a no brainer and I am missing it. But I am sooo sick. So weak, feel like I have been run over a bus and am really loosing my life as I have known it. Having said that, I have now seen two EP's and they said I have POTS due to/following a viral infection and I need to just take the toprol and wait for it to get better. I do feel better on the toprol but I can't really function well. Got a few goood hours i the morning and fall aprat like a mens warehouse suit about 1:00 pm. If I rest I can go again...you know the drill They did a TTT for the diagonisis and I wore a holter monitor for 24 hours. Should someone be looking into more here? Labs????

Thanks!!!!

Erika

Yes!!!

Terrible pain in my back .... thought it was my lungs for a long time. Pain in my chest too and up my throat. Severe when I have done too much. Today I just woke up with it tho...go figure. I have POTS too. I don't have the BP thing tho. I think this pain is called "coat hanger" pain. I am new to this but I am sure someone with more knowledge will have a more scientific explaination.

Glad I am not alone.

Erika

Gosh yes!!! And has been the source of my biggest confusion.

I do feel much better on beta blockers.....I am able to stay out of the hospital due to them. But I always feel bad.....or almost always.... on the BB my heart rate is pretty good.

If I do no activity...lay on couch all day and am on BB...I could do better. I did hear the hear rate is just a compensatory response to the blood not getting to the brain.

But again...I am very new to this. Any very thankful for all of you!

Erika

Thanks for your input!!

This hasbeen such a hard time. I went back to the cardiologist yesterday who referred me to the electro physiologist and asked him to help me get out on disability. He said he didn't do that my PCP would have to do that. He also said he had never heard of POTS. My boyfriend was with me, he ties to be so supportive but is so frustrated as well.

We left and I started crying. I am going to my PCP tomorrow to ask him to help. I am clearly so disabled. I don't even really understand what is going on with me. I really need someone to take me out of work and then FIX me!!! My eletro physiologist waid he would try to get me out of work but said it probably wouldn't hapen with this diagnosis.

I feel so guilty fo my kids and my boyfriend and even my job. I want so much to be better but I just still am so limited even on the toprol. Furthermore, I know every one really wants to help me but they don't know what to do with me.

I am trying to get into MAYO in JAcksonville with Dr. Kusumoto. I think I need a neurologist tho.....Kusumoto is a cardiologist. They are all out of network.....so I am waiting to see if my insurance approves.

Sorry for venting......I just don't know where to go with all of this

Hi Ricky and Michelle,

Sorry you all have been going through so much. Although I am glad to hear you are here in Florida!! I also live in Orlando. I have recently been diagnosed with POTS...after about 6 months of being soooo sick with no answers.

Anyway, can you tell me whihc doctor here in Orlando you are going to that has been helpful? Also, the name of the facility that does ANS testing in Stuart? At this point I wil go anywhere.

Thanks!!

Erika

I am new here as well but you are singing my sonng. I just posted and please feel free to read my post. I seem to have so many of your symptoms and have been diagnosed with POTS 3 weeks ago after 6 months of being really sick.

I know about feeling like you are going to loose everything. I feel so bad for my kids, boyfriend, and anyone who loves me. They are so frustrated as well.

I have finally applied for disability ... I had been workng so hard to get a promotion but now I can't even work 8 hours.

This has been very difficult. I am soo glad there are websites like this.

You are not alone.

Erika

Hi.

I am new to all this. I am so confused and my life has really beeen turned upside down with so few answers.

I am 45. Have two kids, 15 and 10. I am normally pretty healthy expect that I had Guillain Barre in 2001 which nearly killed me and left me with some nerve damage in both feet and lower legs. But I have really made do, I can snow ski and play tennis....un heard of for a girl who was never supposed to get off the ventilator.

Anyway, I got a virus in September of last year. I got better from the virus but never really felt well. I couldn't explain it. I just knew I was sick...didn't feel right. Very weak and some sinus symptoms...pain in my face, neck, throat, and chest and short of breath. Doctors couldn't figure it out and neither could I. I finally started going to the hospital (a lot!!) Unfortunately, as they would take my heart rate when I was sitting down it was high but not that high.

You know the drill, finally someone did a holter monitor and my heart rate was around 190 at the peak and anytime I was moving it was well over 120. I also had about 100 + ventricular events (should I be worried about these?)

The cardiologist send me to a electro physiologist who immediatly said it was "inappropriate sinus tachycardia". Finally someone had a diagnosis....I was so happy but not convinced. He then did a tilt table test....HR 90 laying down and 140+ standing up. Didn't have the blood pressure thing.

I am on 25 mg toprol in the am and 12.5 before bed if needed. It does slow my heart rate...I am around 60 lying or sitting and around 90 standing. I do feel so much better on the toprol. However, I still do not feel right. I just fall apart around 2 in the afternoon. I have to lay down. I feel so sick and can't explain it. Kind of feels like I am not getting enough air and am being chocked. Pain in chest and in back (mid back by the heart). If I lie down for an hoiur or two I can go again for a few hours but it really depends. Most nights I am in bed by 8:30, so weak...exhausted.

I don't understand why I am still feeling so sick if my heart rate is pretty much under control on the medicine. I really still have a hard time getting around. The more activity...the sicker I get....if I rest I can get it back together.

I also have started to have very sharp pains in my stomach and then have to run to the bathroom. The pains in the stomach are severe.

Finally, I have neuropathy from the Guillain Barre but sometimes now I have such bad joint pain and just pain all over....terrible pain. Does this make sense?

Does anyone have pain in their face...like discomfort in the sinus area.....along with just generally feeling like my head is going to pop off? I have been tested for allergies...acctually they spent 6 weeks sending me to allergists.

Oh, and feet swell and turn purple. I think this is typical from what I have read.

I have finally had to break down and apply for disability.....I can't seem to really work a full day.

So.....................help.....does anyone know some doctor who can help in Florida? Do the symptoms I have make sense? Is there another medicine I can ask my doctors to try me on?

I am really starting to get depressed. I was so happy to finally get a diagnosis. But now I really need someone to hep me. My neurolgist is wonderful but seems totally lost and says just to rely on cardiologist. The cardiologist says take the toprol and this will pass.....(like a kidney stone!)

I really appreciate any insight.

Thanks!!!!

Erika