daisy

Hello, Wondering if anyone experiences tingling in their heads, especially when standing? This is a new one for me....feels very weird and uncomfortable. Circulatory maybe? Not enough oxygen getting to brain? "Normal" symptom of POTS? Any input is appreciated!

Congratulations!! I'm sure she's beautiful!! Glad to hear the delivery went well for you. I have had several surgeries and done just fine on stool softeners afterwards. I just am careful to take the least amount possible so I don't get hit with the opposite problem...Colace is a good one but I've also been ok on Dulcolax. All the best to you and your new little joy!

Sorry I haven't replied sooner - I haven't been on the forum for a bit.....so sorry to hear of your accident and complications. Praying that you will feel better very soon and sending you hugs...

Maxine - I hope your Dr. visit was helpful to you. I do understand what you're going through - my thing is hydration, hydration, hydration. My bp goes high often with tachy but I still get the blackouts and lightheadedness. I did want to say that I had to chuckle at your post though. I am just like you.....I worry about passing out in the nude, etc. Once, when the paramedics came to the house because of a heart issue, I was half coherent and lying on the floor and they were hooking me up to all kinds of stuff and I said, "I'm sorry, I didn't shave my legs!" The guy laughed and said, "that's ok ma'am, we'll still treat you." Later, I thought - wow, that was really a stupid thing to think of during that crisis. Guess I'm vainer than I thought!

Way to stick up for yourself and in the process the rest of us fighting this! As we all know, the worst is "but you don't look sick - you look so good" deal......hope the security guard learned something from this experience!

I got a pair when I was in the hospital for surgery a few weeks ago. I put them on today because I was going to run a short errand with my mom. Well, didn't help at all...in the middle of the store, my heartrate suddenly spiked way up, I felt like I was suffocating and there was a huge knot in my throat, started to black out, etc. Ended up on the floor with people stepping around me saying, "excuse me!" Guess they thought it was normal for someone to be sitting on a dirty floor in the store as pale as a ghost.....pathetic. Anyway, the stockings definitely didn't do me any good today. Will I try again? maybe.....

Well, I hate bringing up my plumbing but we all have to do it and our dysautonomia makes it harder so here goes. I have had IBS for years alternating constipation and diarrhea. As many of you know, I had my gall bladder removed four weeks ago. Things are going ok with the exception of getting the plumbing working again. I cannot go.....seven or eight days will go by and then I will have to take Dulcolax or something to get me to go and I get hit with diarrhea and the whole viscious cycle starts again. The really bad thing is that the urgent diarrhea episodes are causing vagal arrythmias. I go into afib on the toilet! Or, I get really bad tachy episodes when my bowels are just moving (not going but I can feel my system working). I am eating prunes, beans, as much fiber as possible. I guess I also need to add a stool softener like Colace or something. My question is has anyone who experiences these vagal heart issues related to bowels found a solution or something that helps? Thanks!

I have noticed lately that I am getting very dizzy and vertigoish (yet another word that I made up!) :-) while on the computer. Not sure if it's a potsy thing though because I keep catching myself looking at the computer at a weird angle with my head/neck. My head is always tilted back and I am looking up.....I am thinking that may be causing some of my dizziness. I know that if I am sitting too long at the computer, bp will drop and that will cause it but this is for those times when bp/heartrate are stable. I am also starting to realize that some of my awful dizziness may be coming from TMJ. I am catching myself grinding my teeth constantly - at night and during the day and have read that can cause dizziness. Maybe some of the dizziness I attributed to POTS can be explained and even helped if I address these things? Anyone else with TMJ dizziness or odd neck angle dizziness?

1. pupils get larger 2. strangely enough, I can dry my hair upside down and feel better...I think it's the same concept of putting your head between your legs when you feel faint - gets the blood to the brain. But, if I just slightly lean forward, I feel dizzy and spinny 3. hand turns bluish/purple within a minute or so and gets very cold...

I was on a .1mg daily of florinef for a couple of years.....had to go off because I just couldn't tolerate it...my bp would go too high (I have hyperadregenic POTS it is believed so I go high as well as low).....usually when I would get a headache it was because my bp was too high...I could only take Tylenol. Feel better!!!

Glad you all liked it! It was funny, because I couldn't sleep and it just popped into my head...now if I can only find a way to get my true love to actually get me all those things for Christmas!!

Yep - I get this - it feels like when you're in the shower and water fills your ears. It happens all the time...I get ringing in the ears too and deal with dizziness and vertigo daily - usually when my ears are acting up, I am also having the god-awful pressure in my head. But, there's no infection....never made sense but one of my worst symptoms.

Hello - I have POTS and also atrial fib, atrial tach, SVT, and IST. My EP did an EP study to try to identify the area of my heart that was misfiring but literally every circuit was affected so my EP was unable to do anything. I went into afib during the procedure and wouldn't go back into rhythm and had to be shocked a couple of times. Since then, my atrial arrythmias have gotten worse (that was about 5 years ago). I also have bradycardia now pretty frequently. My EP has talked about ablating the sinus node and putting in a pacemaker but made it clear that it wouldn't help the POTS. Neither of us have felt comfortable moving forward with this decision but it is starting to become a "pick the worse of two evils" path due to the inability to get the arrythmias controlled. Now, I go into afib every time I have an urgent bowel movement (which is frequently since my gall bladder surgery and my bowels won't get back to normal) and under stress. Definitely get a second opinion and do the research....you may get relief from your atrial arrythmia if that particular circuit can be identified but as the others said, ablating the sinus node is risky and success is definitely far from guaranteed. Good luck - I know how hard it is to live with these arrythmias..... aabriggs: I was not under the impression that the sinus node controlled POTS. I was under the impression from my Drs. that POTS was a brain issue with bad signals being sent to the sinus node from the brain (the ans) but that the sinus node itself wasn't causing the POTS. I would be interested in anymore info you have on this...thanks!

you are so right Julie! For me this time of year I am always freezing!!!!

Thanks for posting that - a great article. I am going to take it with me to my next ep cardio visit next month. My symptoms have always baffled me because they occur upright and sitting and even lying down.....I would like for him to do some more testing and this is a great guideline! Thanks again.

My version of the 12 days of Christmas for us Potsy People: On the 12th day of Christmas my true love sent to me: 12 salty potato chips 11 water bottles 10 electric blankets 9 cleaning ladies 8 gourmet chefs 7 fiber tablets 6 cases of gatorade 5 stores that deliverrrrrrrrrr (make sure you're singing this loud and holding the rrrrs!) 4 compression stockings 3 friends who "get it" 2 caring doctors and a lifetime of dizzy-free days!!!!!!

Thanks for the replies - it's always nice to know that I'm not the only one with these wacky symptoms. Erik, I found your info very interesting - thanks for taking the time to write all of that. Like you, my "inside shakiness" only occurs upon waking up. Each time I have been waking up from a dream - not a stressful dream though...just a regular dream. It's like my body is having trouble going from the sleep stage to the reality stage. A bit concerning....all of my neurological symptoms seem to be progressing so I hope it's not a sign of anything worsening....hoping this won't be an every morning occurence it's a bit disorienting!

I mentioned this in another post about low blood pressure but it happened again this morning so I thought I'd start a new one. Does anyone else experience vibrating on the inside while waking up? It is very uncomfortable. I feel like my insides are just vibrating and shaking like a cell phone. I sat up and looked at my hands, expecting them to be shaking, but they were steady. It's all on the inside. Checked my pulse during the episode - normal. It subsides in a couple of minutes.... This is a new symptom for me - just wondering if many of you experience it too and if anyone can shed some light. Thanks!

Thanks for responding - the frustrating thing is dealing with both the lows and the highs...I wish it would go one way or another and then I could treat it. The treatment for high bp makes the low too low and the treatment for low bp makes the high too high - it's a viscious cycle. I would love to hear what Dr. Grubb tells you - all the best with that.

I am struggling with highs and lows in bp and heartrate. I have been diagnosed with POTS, afib, atrial tach, SVT and IST. My problem is that my heartrate and bp are so inconsistent anymore. When I am sitting or lying down, my bp plummets to around 80s/40s and my pulse drops as low as 42. When I stand, the POTS kicks in but I have the hyperaderenic form so my bp goes pretty high and of course my pulse goes up high as well. If I am on my feet too long or stand in one place, bp will drop and I'll get the typical symptoms. I have come to handle the upright stuff pretty well over the years but the low bp and brady stuff is becoming quite a problem. I am having syncope issues lying down and feel like crud. I can't take florinef because then my bp will be too high when I stand. I am only on a calcium channel blocker now because the side effects of the beta blockers and anti-arrythmics became too much over the years. I have to take something to keep my heart in rhythm and keep my bp under control when standing - but then it contributes to how low it drops while sitting. Very frustrating...feel like I need to hover in mid air or something to get it "normal". The other complication is the other arrythmias which get thrown into the mix. I had surgery two weeks ago so I am assuming I am so flared up now because of that and also because I am having pretty frequent bowel issues as a result of the surgery (had gall bladder removed). But, this was happening prior to that as well. What do those of you who have this do that helps? Anything? This morning I woke up feeling like I was vibrating inside - very strange - I sat up and looked at my hands because it was if I was shaking all over on the inside but I wasn't on the outside - bp was low so I'm assuming it was related to that...never had that happen before - hope it doesn't again. Thanks!

I was diagnosed with GERD several years ago through a barium swallow- I seldom have the heartburn - mine is pressure in my chest and feeling like I can't get a good breath..I get raspy too sometimes and I burp like a sailor!!! I take Protonix every day for it but it still breaks through. Sometimes it disappears for weeks and other times it is just awful - like I can't breathe right. I have a sliding hiatal hernia as well and that can cause symptoms. It's another yucky thing it seems many of us have to deal with

Thanks everyone - surgery went well but I am very sore. The other thing I wasn't expecting is to feel so nauseous every time i eat - and all I've had is toast, jello and some soup. I read that sometimes people get worse after the surgery but I guess I have to give it time. I hope I didn't go through this for nothing!! If I lose much more weight, I'll blow away. I was irritated because all day in the hospital yesterday I was supposed to be getting fluids and my IV had clogged and I didn't get any. So, I would start to black out when I stood and I am still having trouble getting my bp up even though I'm home and salt loading and drinking tons of fluids. For those of you who have had you gb out, were you nauseous for awhile after? I haven't actually vomited but have felt very close...potsgirl, I know you told me to be cautious and I haven't eaten hardly anything with any fat at all but I wasn't expecting this....blech!

When I was on Toprol, I could only take the brand. When they switched me to the generic, it didn't work at all - I became extremely symptomatic very quickly...it did not control my heartrate whatsoever. I remember reading something about generic toprol not working for people...here's an interesting link about beta blockers and their generic counterparts... http://www.healthnews.com/problem-found-wi...sure-medication

Yes, I feel this often too. Exactly like you described - like I'm not getting a full breath...sometimes my chest feels like I've been running in the cold even when I'm not doing anything at all. I do have GERD and sometimes I think it may be related to that but more often than not, I can find a reason. It isn't even related to a fast heartrate either. Obviously, if my heart is racing, I'll be short of breath but often it happens when it's at a normal level. Yet another symptom that perplexes me......ughgghhg.....hope you can find some relief.

Yes - the vestibular stuff is the worst for me. Like you, I can deal with the racing heart but on my "dizzy days" I am useless. My neurologist said that in addition to POTS I have a deep seeded vestibular dysfunction that would not show up on any traditional tests that an ENT would do. It flares under stress, bad weather, and sometimes for no reason at all. I never quite understood this but it is by far my worst symptom. It feels like my brain is growing from the inside out and the pressure in my head is unbearable. Then I feel like I'm swaying on a boat and if I'm walking it's like I'm being pushed downward by a heavy hand or like someone literally shoves me from behind. Definitely not fun......I often joke that if I'm going to feel this way, I should at least get the benefit of a pina colada or two - but no such luck..... My neuro said that Xanax can help (not because it has anything to do with anxiety but because it calms that system down) but I usually just tough it out because the meds make me feel even loopier. I hope you can find some relief and get some answers......I often think that there has to be a connection between the POTS and this vestibular problem since they are all autonomic controlled....