Tammy

The only ace inhibitor I'm familiar with is Zestril. You can do research on in and see what you think.

For the tremors and low tolerance to stimuli, a beta blocker does help but it takes a while to get your body use to it and also if they were to prescribe a normal dose, take about 1/4 of that amount for the first week or two and SLOWLY move your way up. You may still find that 1/2 of the dose that your doctor recommends will work for you but give it time. I had written off BB for years as I couldn't tolerate them, then, finally I figured out that I needed a much much much smaller dose at first and than my body slowly tolerated the Atenolol. As for cost, I get 30 pills for $4.

I think every EP has a different look at this. My EP diagnosed me with POTS even though I had a normal TTT. He said that from all his research it is only about 85% accurate and typically has about a 15% error of both negative or positive results that are incorrect. Therefore he based it on my syptoms which point to POTS. However my general practician doctor said that he does not understand how it all works and said that since my stuff falls into speciality areas that he is unfamiliar with, there's nothing he can really do other than prescribe meds that other specialists have recommended. It has been a long road to get to this point and recall how many doctors I saw that wanted to try this or that and it always made me even worse. I finally just stopped going to them as I seemed to be going backwards from all the testing. So now as I sit here feeling very short of breath, lightheaded and so weak, I read this website and find support here instead.

I would love to get rid of the sensation like a panic attack is coming on everytime on I'm my feet for more than 5 - 10 minutes. It scares the begebees out of me and than it will continue to try to surge over and over again for an hour or two after... and than I get that horrible weakness/dizzy feeling, etc. So just the plain fatigue ***** but it doesn't scare me at least, but it does make the day difficult.

Definitely interested in this topic as my pulse pressure is usually about 20 or less when I'm feeling really bad. However I also get a depressed ST segment at the same time, so not sure how that correlates into the picture at this time. Hopefully this alternate theory can explain more about why we experience the narrow pulse pressure.

I wonder sometime if it isn't that we just stop going to the doctor constantly because we get to a point that it just isn't helping, so the doctors figure that we must be getting better. At least this is my case. At first I seen my doctor constantly, seen specialist, went through a million tests, etc. Once I had a diagnosis, tried many drugs that seemed to only make me worse, and a few that helped some, and so on, I no longer kept needing appointments. So from my doctors point of view, I must be doing better, however it is really about the same at times, and sometimes not the same, etc. as it fluctuates as POTS does. I'm homebound, mostly in my recliner all day, and try to be active (move around a few minutes at a time as I can or that my daughter requires of me). That is the only thing I can think of as to why some physicians seem to think we could get better. My neurologist strongly believed that mine would get better once my daughter became more indepedent. Well she's 4 now and I'm still struggling, so I'm not sure that had anything to do with how it all evolved. I've been weak all my life, and sleep disorder, stress, physical activity/running after a toddler, etc. hasn't helped, but it sure makes me want to keep going. I think I'd have given up by now if I wouldn't have my daughter to focus on because I am not a fighter for myself, but I will fight to keep going for my daughter.

Sunsensativity here too. I think it's from my meds though aｓ　Ｉ　ｄｉｄｎ?ｔ　ｈａｖｅ　ｔｈｉｓ　ａｎ　ａｎ　ｉｎｉｔｉａｌ　ｐｒｏｂｌｅｍ．

. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Unsure 2. Have you ever been diagnosed with EDS or suspect that you may have it? No 3. Do you experience symptoms when lying down even after a night of sleep in your bed? rarely, except if it's adrenaline surges, those happen in any position. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Yes as I also get bp spikes with rushes and tachycardia, sweating, etc. 5. Have you ever been informed by a doctor that you have low blood volume? I have narrow pulse pressure when my symptoms are at their worst i.e., 98/80 compared to 99/60 when symptoms aren't as bad. This emight be same as low blood volume?? 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Periodically 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Legs feel tingly and achy when standing for more than a few minutes and my stomach starts to bloat. 8. Did your POTS arrive suddenly? Yes 9. Is your skin pale? Kind of 10. Please the top 6 worst symptoms that you experience with POTS: Sudden weakness spells that come out of no where when I've been standing in one spot Adrenaline rushes No tolerance to heat/cold as it seems my body won't regulate it's temp properly Sensativities to many foods, preservatives, etc. Low pressure systems during a storm makes me feel oxygen deprived (not short of breath) When my hands and feet get cold they take forever to warm up and usually my right hand is colder than my left hand.

I never had much energy and always needed nap to function. All my friends could go from morning to night and I always had to sleep for an hour or two before I could go out or go to work after school when i was younger. Basically, when my daughter was born, i could no longer take naps, and sleeping through the night did not happen as she ate every 3 hours for the first few months of her life. My body go totally screwed up and even though I was so exhausted I thought I had to try and hold a job too, so I went back to work and CRASHED big time. Still haven't recovered. Strangly enough, I had a virus at the same time that I started back at work and wonder what was the straw that broke the camels back.

I'm on atenolol also. For the first month, I was only able to take 6.25 and than slowly moved up to about 10. and than after about two months was able to tolerate 12.5 which is what I'm still taking. If you do taper down, make sure you let them know this before your cath lab so they are aware of it. Hope it all works out for you. Just takes our bodies longer to tolerate medications that most people can just jump into taking.

Hi Tammy, I have been in the same place you are at as far as the symptoms related to POTS, body being iin overdrive, insomnia, etc. I still am basically recliner bound, as I can't be on my feet more than a few minutes at a time, but have found Atenolol, Klonopin, xanax, B vitimins, and ambien to be a huge blessing. I don't take them everyday, except the atenolol as I worry about having to keep uping the amount if I did and after an awful withdrawl experience from Prozac, I don't want to ever experience that again!!!! Clonidine you may want to ask you doctor about. - Tammy

Time and time again, I wonder if my thyroid doesn't make my POTS symptoms worse, however, I know they are separate illness. I take Synthroid, but wonder if I should try a different option just to see but I'm a bit afraid to and not sure if my doctor would even recommend it. My tests always show it's within range. I'm curious, those of us who also have a thyroid disorder, which drug you take. Has anyone been on Armour?

Virus in fall of 2005 started mine but had tachycardia issues only before this.

I have a feeling I'll get car sick feeling in one as I've had fun trying out my brothers (with celebral palsy) and I right away feel motion sickness, but would love to be able to get out more than just planning very short trips in stores to pick up things close to the front of the store... and of course, only 1 store makes up the entire trip, but there's been many trips to the store where I'm too weak to even get out of the car, so wish there'd be something that would work for me.

My GP thinks I have something called Raynaud's Syndrome as my fingers and toes get so cold they hurt. He wanted to start me on Norvasc as he said calcium channel blockers help this, however I'm on other meds that I just figure this is one thing I don't care to medicate on top of everything else as I can live with it. My right hand and foot typically are even colder than the otherside, which no doctor can seem to explain.

Hi! Does anyone know if there are risks in salt loading related to cancer? I've heard and read a few times that in Japan, they salt their foods heavily and therefore account for the high occurance of stomach cancer there. Is this something we need to be aware of?

I also take Klonopin (brand name) and it does wonders for my body... I just had to take a bit tonight as the weather (low pressure system) has my body feeling oxygen deprived, jittery, shaky, weak, spurts of fast heart rate, etc. and it has been about 1/2 hour since and I'm feeling so much better. I'm afraid of developing a tolerance, so I only use it when I feel like it's either go to the ER or take one, and it seems to do the trick for now. I read that over the years changes in meds based on how our bodies change may be required, so for now, I'm thankful for it. I've only had POTS since 2000, and than relapsed to being homebound since 2005, so I'm sure there are more people with longer experience on this med to see long term results.

It's probably the combination of a virus and stress, which you've already pretty much identified. The best thing you can do is drink lots of water and try to relax your mind/body. Once you feel at ease, if the arrythmias continue, then you may want to go to the ER and they might be able to watch it on a monitor to try and catch something, however my ER never catches it and sends me home 6-8 hours later feeling just as sick. Hope your heart gets back on track soon

Avoiding my in-laws as they sometimes just know all the wrong things to say and make me feel so bad about being ill and how it is such a burden for them and my husband (they are big time social people, so when I can't go to all their events, they make me feel like I'm being selfish if I don't go) , so sometimes avoidance of people is the best way for me to cope. Laughter makes me feel physically worse, so I have to be careful of getting the giggles or I'll pay for it, but just trying to think of calm, tranquil thoughts is best. It's weird as I was the most giggly, silly, almost somewhat wild child in my teens years to think that this is who I am is disheartening, but I figure if someone has to be ill, why not me, as I'm no better or worse than anyone else as we all have the things in life to deal with I quess. Hope we all find things that give us a Pick Me Up when we need it most This forum is definitely a Pick Me Up when I'm feeling all alone in the struggle!

Hi Ernie, I noticed that you also have hypoglycemia and not sure if you take Metaformin (sp?) for it, but you might want to be re-tested for this and have them check your insulin levels along with glucose levels at each interval. Tammy

Growing up with goats and having so much fun with the little kids when they came, these pictures bring me back to a more healthier time in my life. God bless you for sharing these adorable photos

I also can't tolerate any amount of alcohol as it affect my heart rate and rhythm. It's like poison to me. Wish I could though

Thanks Jump for ideas as to what this may be. I have had holter monitor tests but never have had this type of rhythm thing at the time. I too am on a Beta Blocker that does help the tachycardia (mostly) and sleep with a wedge under my pillow or in a recliner if my tachy gets back. It was the weird pause that had me concerned but sounds exactly like you also described. I feel much better, but will mention this to my EP at my next yearly appointment.

Hi Everyone, I have had weird heart rhythms for some years now, but everyone now and than I get different ones that I'm not accustom to. Late night after having a long day with the Holidays with family and I was sooooo tired, as I rolled over to one side to get comfy and than decided to switch to the other side to get comfy, I got 3 really hard beats which kind of surprised me as they felt like they were so hard thought my heart was going to pop out of my chest. Than no beats for about 4 seconds. And than this repeated a few times and than turned into tachycardia for a bit which set off an adrenaline rush and so on. I typically will get a quick beat (Premature beats) with pauses, but usually they aren't as long in duration. Can anyone relate and what is this? Is this a form of Bradycardia? Thanks

At some point in time, this person will have a cold or flu or some sort of virus and I'm sure will talk about how 'sick' they feel... at that point, just nicely state to her what she said to you " That your not the pitying kind and walk away! I've done this and it usually helps them 'get it' a little bit! Good luck