daisy

Yes, I experience this frequently. My heartrate is either really high (on standing) or really low. It stays in the low 40s when sitting or lying usually (unless one of my arrythmias kicks in) and even at times will drop when standing. It's made my POTS hard to treat......I have atrial arrythmias and my Dr. believes that is what is causing it not the POTS - the electrical system of my ticker is just all messed up. I have to be very careful what med I take for the high heartrate because it will drop it too low when I'm sitting. Very inconvenient....makes me feel as bad when it drops as I do when it is too high

I'm so happy you are doing so well and your post came at a great time for me! I am having my gall bladder removed tomorrow and am quite nervous about it. Mostly nervous because I don't have stones and I keep reading that many cases don't resolve after surgery with just a low ejection fraction. Did you have stones? Anyway, it is great to hear your success story and I pray you continue to improve and eat up!

Well, tomorrow's the day! After almost three months of pain and 15 pound weight loss, I am finally getting this sucker yanked. I have had so many surgeries in the last few years, I shouldn't be concerned but for some reason I am about this one. I guess my biggest concern is that my POTS and arrythmias have really been acting up the last several weeks and I want them to stay stable....don't want to get worse for the holidays! I am also concerned because I have been reading that in a rather large percentage of patients who have gb removal without stones, they are still symptomatic because the problem may have been the bile duct or something related. But, my ejection fraction is only 17% and I feel fine unless I eat too much fat.....then powie - a major attack. So, I am praying this will resolve the problem. Surgeon hopes to do it laparoscopy but because I've had so many previous surgeries, he may have to do it open (ugghgh, I hope not!). Will be glad when tomorrow is behind me - hoping to be well enough to eat Christmas cookies!

I was diagnosed with POTS through a failed tilt. The dizziness that has plagued me for years is my worst symptom. I saw a neurologist for the dizziness shortly after my POTS diagnosis because we couldn't figure out why I was still so dizzy when vitals were stable (this has long been a question of mine). He did all kinds of tests and said I have a deep seeded vestibular disease (not Meniers) that causes the vertigo sensations and the sensations like I'm being pushed/pulled etc. He said that this is a separate issue from the POTS and would not show up on any traditional tests. This was years ago. He prescribed Xanex to take to help alleviate the symptoms but I was unable to take it with all the other meds I'm on. A few years later I saw an ENT and he thought I was having silent migraines and prescribed something that would have sent my heart arrythmias into a tailspin so that didn't happen. The dizziness waxes and wanes and I have never been sure if it is truly what either of them said or if it is a dysautonomia thing - where my body is just constantly making adjustments that may not show in my heartrate or bp. Recently, the dizziness has been relentless (especially with the rainy East Coast weather) and I feel like I'm always on a boat. I can exercise some but afterwards will go through about 15 minutes or so of extreme rocking/dizziness when I stop. My cardio feels this is due to the blood vessel constriction and my body readjusting to not being upright. I have never received a definitive answer to my dizziness and it is the symptom that makes me the least able to function.....

I've always wondered this as well....why am I so symptomatic when my heartrate and bp seem stable? No clue.....the past few days have been just AWFUL with the dizziness, vertigo and head pressure (the rainy weather probably wasn't helping here on the East Coast) but heartrate and bp were ok. Every time I stood up though and was on my feet I just got so sick I had to lie back down. I guess it's our bodies trying to make adjustments that we aren't seeing yet in our vitals???? Whatever it is, I wish it would just stop.

Can someone tell me what cranial manipulation is? I live in DE and am only about 20 min. from Dr. Bellew - he used to work with my PCP but I didn't know he was familiar with POTS or had a potential symptom treatment.......

I too have the erratic pulse and bp changes. Mine are due to other heart arrythmias that have developed which are a separate issue from POTS. I have afib and other atrial arrythmias in addition to POTS. When I am sitting and my pulse goes from very low and shoots up like you described that is usually inappropriate sinus tachycardia for me. If it does that and is also irregular, it is usually an atrial fib run or an atrial tachy run. When it gets super high, it is SVT. All of these have been documented on heart monitors over the years and it's funny because now I can identify what type I am having and when (and I was usually right when we checked the monitors). My POTS tachy happens upon standing or if it is really acting up it will happen if I go from a lying to sitting position.......have you seen an EP cardiologist? I am not in any way suggesting that you have these arrythmias and POTS/dys can certainly cause many variations in our heartrates/bps at any given time (much of which makes no sense at all) but this is my story. I thought it was all related to POTS until I had thorough testing done and these other arrythmias showed up. I hope you can get some answers - I can relate to how awful those sudden tachy bursts can make us feel.

See? That's why I come to you all with these things!!! Thanks for the info - I had no idea that the compensation fund had been around for years....that makes me feel better. Having said that, I will probably not get her the shot given that it is believed she already had H1N1 but will have to consider all angles carefully for my son.....

That is awesome news!!!! So very happy for you and hope and pray you continue feeling so well

The Dr. believes my daughter had a mild case of swine flu a couple of weeks ago. It is going around her school but most of the Drs. around here aren't testing for it anymore so it's just an assumption based on her symptoms. She had a fever for four days (didn't go past 101), aches and a bit of a sore throat. Towards the end she started coughing some (although it wasn't awful) and I took her to the Dr. because she tends to get walking pnuemonia very easily. They gave her an antibiotic to prevent that and she is fine now. A couple of days ago her school sent home a packet saying that they are participating in a program with the Department of Health to have children immunized for H1N1 voluntarily at her school. Here's what REALLY concerned me as I was reading this packet: First you have to check off a box indicating whether or not your child has ever had Guilliane Barre syndrome (a severe paralytic illness) as well as any allergies, etc. Later on an H1N1 vaccine info sheet it states that an earlier type of swine flu vaccine ws associated with Guillain Barre but that since then flu vaccines have not CLEARLY been linked to it. It also says that the H1N1 vaccine is EXPECTED to be as safe and effective as other seasonal flu vaccines (may be just a word issue but it bothered me). What bothered me most of all though is that there is a whole section on "Vaccine Injury Compensation" saying that if you or your child has a reaction to the vaccine, your ability to sue is limited by law. But a federal program has been created to pay for the medical care of expenses of certain persons who have a seroius reaction to this vaccine. Huh? I have never seen this on any other vaccination info sheet......why do they feel they need to create a fund for vaccine reactions to H1N1....am I missing something here? Is this fund provided with all flu vaccines? I don't know - it just didn't sit right with me. I am not getting my daughter the vaccine anyway since she probably already had the virus and is immune but after reading that I wouldn't get it for her. That wording is just too concerning for me....call me paranoid and I may have to eat my words but it just frightens me!

Thanks futurehope - that's good to know.....

I have tried the anti-arrythmic drugs for the atrial arrythmias and they ended up causing neurological problems as they built up (nasty drugs!). Right now we are using calcium channel blockers for the POTS and the atrial arrythmias but it's not controlling the arrythmias...... It's hard to find a drug that will work because in addition to the atrial fib and atrial tachy stuff, I have the POTS tachycardia (and inappropriate sinus tachy) and bradycardia. The drugs to help the brady make the tachy too much and the drugs to slow the tachy increase the brady.......and the rhythm just seems to have a mind of its own these days. I am very fearful of having the sinus node ablated because there are no guarantees and there is no turning back. And my Dr. admits that he is not sure how the pacemaker will affect the POTS. Because the pacemaker won't fix the POTS tachy (because those signals are coming from the brain and not the sinus node in the heart) he is concerned that the pacer will be in battle with POTS all the time and constantly be pacing and I might feel worse. Fortunately, he doesn't want to rush into this either.....I just don't know what to do at this point. But for now, gall bladder has to come out so I will take care of that and then move on to the next! Thanks for the feedback!

Okay, I thought I'd update everything in one note I took my daughter back to the cardiologist this week for her monitor results. Her echo and bloodwork came back find (no big surprise there). She is having PACs and PVCs (also no big surprise) but not too frequently and they are benign. Her heartrate is fast at times and the monitor picked up on that. He does not want to medicate her at this time because of her age it really doesn't seem to be causing her symptoms. Now that her anxiety issues are pretty much controlled, she doesn't seem to have trouble with the fast heartrate. She doesn't get sick or faint or anything, although once in awhile she will get a big short of breath. Having said that, an autonomic issue hasn't been ruled out...she does have an increase upon standing (although not every time) and we are doing the typical things for autonomic dysfunction like salt loading, drinking Propel and lots of fluids, no caffeine, little sugar, etc. If she starts having symptoms that worsen, we will re-address things. She had a HUGE growth spurt over the summer and he thinks the orthostatic heartrate issues may be due to that (her legs are now to her neck!) because it takes longer for her heart to pump the blood around her body and he believes that will adjust and resolve in time. He never told her that the fast heartrate is caused by anxiety (fortunately, he knows it's not) but did tell her that anxiety can make it so much worse....she has been better since she heard that from him and not me. But, again, he made it clear that if she starts developing symptoms due to this, we will change our strategy. So, overall, I am happy with that.....very happy that she has stablized with things and I can breathe a little again.... As for the gall bladder, I went to see the GI Dr. this week too. He said they didn't mention that I had that one bout of pain during the hida scan w/CCK. He said (after saying the test was normal) that the 17% ejection fraction along with the pain and my other symptoms means the gall bladder should come out. Vindication! I am confused by the mixed signals but don't really care as long as I can get this thing taken care of. Problem is, my heart arrythmias (not POTS related) have increased and are acting up (I went into afib for a half hour after the hida scan) so they are concerned about surgery - fortunately he is making sure I get to the best surgeon in the area. Waiting for their call and then I guess we'll schedule it...... So, after almost two months of confusion and frustration, I am finally getting answers. Thank you all for your support!!!

That happens to me too...but when it was really bad, my Dr and I realized it was being caused by one of my anti-arrythmic drugs. Many meds can cause vision problems. It often doesn't happen right away either but is cumulative. I had been on this medication for two years before it started affecting my eyes - it had built up. My Dr. said it was starting to cause neurological issues and took me right off of it. The problem resolved itself - other than the occasional issue I believe is due to POTS. Might want to double check your meds if you're taking any just to be sure..

Hello - I started getting hives earlier this year...just from touch. I was diagnosed with dermographism and MCAD. I have been taking Zyrtec ever since and it has taken care of the hives. I was also diagnosed with interstitial cystitis a couple of years ago. I can't tell you how many times I was treated for a UTI when I didn't have one. The IC feels exactly like a UTI when it flares....I had heard of the connection between IC and MCAD (wow, too many abbreviations in this note....IC, MCAD, UTI....lol!) but never really pursued it...I was just happy to have an answer! Hope you feel better.... Oh, by the way, there are pretty accurate over the counter tests for UTIs now in the drugstore. They are the ones used in primary care physician's offices. They won't be specific to the type of bacteria you're dealing with but it will give you an indication if you have one or not.

Funny you brought this topic up because I had a weird thing happen yesterday morning. I hadn't been feeling well the night before and had a few near syncope episodes. I got up and got my daughter off to school (she catches the bus at the ungodly hour of 6:45 a.m.) and then went back to bed. I had a nightmare and then it turned into sleep paralysis. I was in that half aware/half dreaming mode. I wanted to move and tried to move but couldn't budge. It was extremely frightening...didn't last long. I have had this before too....I researched it a bit and some research connects it to night terrors....I was definitely having a scary dream at the time. Nightmare or night terror? Don't know....all I know is it was scary and I couldn't move a muscle....

Thanks for the reply potsgirl.....I appreciate it. My cardiologist attempted ablation approx. seven years ago. He tried to identify a focal point circuit to ablate that was causing the arrythmia activity but in my case virtually ever circuit was affected and there was no way he could just ablate them all. That is why he would have to ablate the AV node.....if he didn't, I will still have the arrythmias because there is no one area of trouble. The whole thing just isn't working......my understanding is that pacemakers can be removed if the AV node hasn't been ablated but once it's ablated, there's no going back (because the AV node is the heart's natural pacemaker and without it, obviously the heart won't work). His concern is still that even if the pacemaker gets rid of the arrythmias and controls the bradycardia, it will be running all of the time because of the POTS. So, although he is the head of the electrophysiology department here, he is honest enough to admit that with the POTS thrown into the mix, there is uncertainty. I really don't know what to do. When the arrythmias aren't acting up, they are tolerable but when they act up like they have lately, they are not and they really make me feel awful (although I do take comfort knowing they are not life-threatening per se although they can cause stroke if left to go on too long). Can you feel your pacemaker when it is working?

As you may know, I have been dealing with POTS and atrial arrythmias for several years. The arrythmias are getting worse and much more frequent and lasting much longer when they occur (afib, atrial tach, SVT, IST) and I can't be medicated any more than I am for them because I also have bradycardia frequently. I saw my cardiologist yesterday (who is wonderful) and he is starting to think we may need to seriously consider ablation of the AV node and a pacemaker. Yesterday, my arrythmias happened while I was there so he got to see them first hand (although we have caught them many, many times on the heart monitors). He knows that I will still have POTS and the fast heartrates but the pacemaker would hopefully stop the extremely low rates and control the atrial arrythmias. The other option is just to live with them as I have been doing but the frequency of them is truly affecting the quality of my life (which POTS has already messed up to extremes!). He has been honest with me that my case if more difficult because of the POTS and the atrial arrythmias and that are no guarantees. I am only 40 and there is no going back from this surgery once the AV node is ablated. So, whatever the results are, I will be stuck with them.... My question is have any of you had a pacemaker put in and the AV node ablated due to atrial arrythmias and how has that affected your POTS? Do you feel better or worse? I know we all are different and one person's experience may not be another's but I am trying to gather as much info as possible before making this very difficult decision. Thanks!

Hi Julie - I am mostly homebound except for going out to appointments and and errand here and there if I am feeling well.......if you are looking for a chatting buddy, I would love to chat! (especially with those who are going through what we are and can relate!)

Thanks - and I am calling my surgeon today.....I am really disturbed by them both telling me it was normal with a 17% ejection fraction and my symptoms. Something is very wrong there - I am thinking he just wants to run more tests...can you here the "cha-ching" sound as the money falls? Enough is enough. Anna - you asked me if I have EDS? I have never been diagnosed with it but I do have some of the symptoms - joints that go every which way (smile) and more elastic skin and I had two hernias a couple of years ago.....how does one go about being diagnosed for that.....interesting about the gall bladder EDS connection.

Thank you everyone for taking the time to reply. I am even more confused now....my gastro Drs. office just called to tell me that the hida w/CCK test was negative (my PCP had told me before when I took my daughter to the Dr. last week so I already knew this). Out of curiosity I asked them what my ejection fraction was - she said it was 17%!!! According to all I have read, that means the gall bladder isn't working correctly! She said, the GI Dr. said it is kind of slow but that he doesn't think removing it would fix the pain.......I have heard of many others whose ejection fraction was even higher (I thought under 30 or 25 means you are a candidate for removal) and had theirs removed. UGGHGGHGHGH! To me, that is not a "normal" test....I see him on Tuesday so I will see what he thinks but I am seriously thinking of moving on to a surgeon at this point. I hate being in limbo land like this for so long....

Well, the hida scan with the CCK apparently came back normal - so I am back to square one. Although I had a upper endoscopy last year, the GI doc said he will probably want to do another if this test didn't show anything. I am frustrated beyond belief!!! I have now lost 13 pounds in about five weeks and still can't eat any fat...well just a tad. If I do, pain, pain, pain! Of course, now I am concerned about what it is if it's NOT the gall bladder......why can't we ever just get a clear cut answer - why does everything with our health have to just drag on and be so complicated? It's been a frustrating week because my daughter has been sick for five days now with probable swine flu/bronchitis and my heart arrythmias have been in overdrive...just frustrated to yet again, not get an answer.... Are there any conditions related to POTS that can mimic gall bladder attacks based on eating fatty food? I wonder...... Anyway, thanks to you all for your support and that's the update!

Well, I just had the hida scan with the CCK done. Test wasn't as bad as I thought - I was expecting the worst based on some of the horror stories I read. I had one sharp pang of pain that lasted a few seconds and one bout of nausea at the very end. I don't know if that means the gall bladder is normal since I didn't have an attack on the table (Julie, I know you said you didn't have pain during your scan?)....I was almost hoping for a little bit of pain for some validation (stupid, I know!). Anyway, the technician was wonderful so I really lucked out there. This facility gives the CCK through an IV over a 30 min. period so supposedly that limits the amount of discomfort as compared to giving it all at once or in a 3 minute injection. I'm anxious to find out the results....if this doesn't show anything, I think the next step is yet another scope although I just had one last year. I still have the sharp pain if I eat fatty or spicy stuff and I have now lost 12 pounds so I really don't want this going on much longer.......

Julie - I'm just wondering how your son was diagnosed with a nerve issue in his GI track? Thanks...

I can't speak specifically for the brand you mentioned but I know with me, my pharmacy once switched my brand Toprol to the generic version. It didn't control my symptoms AT ALL and I had a severe hive reaction. I found out later that particular generic had caused many problems in people. My Dr. always writes "brand medically necessary" on my beta blockers because I'm so sensitive. Good luck! I hate it when the pharmacy/insurance companies switch and we don't have a say in it!