gillian502

hi akavella! i rarely use this forum, but a fellow dysautonomia friend who uses it told me there was a post on here about someone who was pretty much in exactly the same boat as i am--pregnant (due aug 3) and with POTS and Neurocardiac Syncope! would love to email sometime--please let me know if you're interested. in the meantime i can tell you about my preg experience thus far. i am being treated as a high-risk pregnancy due to having the 2 types of dysautonomia i have, plus having 2 autoimmune intestinal diseases (celiac disease and colitis.) i've been sick every day for 9 years. i am currently about 11 and a half weeks along and have chosen to remain on my medication. i currently take a beta blocker and mestinon. both are category C drugs, and i feel comfortable after my research staying on them. it sounds from your post as if you were taken off mestinon--i don't know why that would be, since the only cases known of pregnant women taking mestinon during their pregnancy have turned out just fine, but if you get a conservative-minded dr, this can happen. so far, my high-risk OB has not batted an eye nor thown much advice my way one way or the other about any of my meds. i guess it's all being left up to me. my preg so far has been relatively easy with no morning sickness and feels only slightly different compared to my usual daily illness. perhaps i'm so accustomed to feeling ill, fatigued, and generally unwell that pregnancy itself just kind of "blends in" with my normal routine, lol. my HR has increased greatly, and of course was already too high to begin with, so that HAS been tough. otherwise the most difficult part has been not being able to take my beloved aspirin products to control my migraines! that has been difficult as well. like other pregnant dys patients, i am hoping the myth of feeling better during the 2nd and 3rd tri's turns out to be true. fingers crossed on that one. please let me know if you'd like to chat again, i'd be happy to email. gillian

who's says I didn't call my doctor? i already explained that i like getting first person accounts of what others have done as well as medical advice. yes, my dr gives me by-the-book responses and yes it does frustrate me. i did have time to call, and i did call. he hasn't called back, as always, so i thought i could hear some first person advice in the meantime. geez i'm not planning to sue anyone for their first person accounts. whoever isn't comfortable answering DOESN"T HAVE TO REPLY. in the meantime the sermon was a little much.

I took pindolol for almost 2 years, and also started on 2.5mgs. I don't remember it doing that to me. I was a little more tired during the day and even required a nap sometimes, but nothing to the extreme you're describing. I wouldn't stick with that kind of fatigue for 2 whole months, personally. I'd give it maybe a full month or 5 weeks, then try something else.

i agree, but i've always felt better hearing first person stories. doctors always give me the by-the-book answer, and i'm not really looking for medical advice as much as first person accounts of what other people with pots have done. i don't expect anybody here to give me a medical answer, though, i know that's not possible. does anyone else increase their meds from time to time on their own, though?

I'm attemping to travel tomorrow (someone else is doing the driving of course) and I'll be in the car for over 4 hours. The problem is, we're leaving early in the morning, when my tachycardia is at its worst. I've been having trouble adjusting to my new BB, probably because the dose feels too low, and I'm considering taking an extra half pill (Toprol XL) about 2 hours before we leave, to calm my racing heart before the drive. I usually take toprol Xl 37.5 mgs every day at 11am, but by 6 am the following day it has worn off and my heart is racing again. Do any of you ever take an exra half pill of BB when you feel you need it? Do you think it would cause harm to talk an additional 12.5 of the toprol early that day and then take my usual 37.5 dose at my usual time? ps) as I've stated again below, I have already put a call in to the doc. in the meantime i'm not looking for medical expertise, just friendly first person stories of those who have increased their med on their own on an occasional basis and lived to tell about it!

Thank you all again. My loved ones also cannot seem to fully understand or accept my illness, and sometimes neither can the doctors. I feel as if my symptoms are so hard to pin down and describe exactly right sometimes, and that none of this really fits into one definite catagory. Feeling like you've had a 10 hour day when it's barely been 2 hours of doing nothing isn't exactly something doctors or other people can easily classify in their minds. That's what leaves me feeling so without hope sometimes. At least now I can see I'm not the only one who feels this way!

Thank you all for your kind replies, it helps knowing I'm not alone in this. I'm wondering, though, if my sense of fatigue is different from what others mean when they say fatigue. My fatigue doesn't make me want to sleep more; it is a physical, muscular fatigue which makes my body feel heavy and feel like I've lifted weights all day. I wonder if this type of fatigue is unusual. I can't imagine ever having a job like this, and being a single girl I will eventually be faced with having to make a living! (right now mom helps me out but that can't last forever.)

I lost a ton of weight when my Celiac Disease was at its most active. It sounds like your diet is a little too "atkins" and you need to change that a bit. Personally I think the whole milk should help you; I put on tons of weight drinking that stuff, but everyone is different. Baked goods should help, like muffins and breads and cakes. The question is why you are continuing to drop weight, and if you're having any concerning symptoms such as diarrhea, etc. If so you need to get that checked out. Good luck gaining!

Well this sounds familiar! I'm the same way, after 3 years of living with this ****, because it seems there's always some new crappy challenge to deal with or overcome. This week it's getting used to a new BB that isn't doing its job; before that it was a different BB and the symptoms that one caused, and before that it was a bad episode of pre-fainting at the movies followed by the fear of ever going out in public again! It never ends, does it? The weak legs you mentioned sound exactly like me, too. I have about 30 minutes of strength in my legs and feet and that's it, I'm done and must sit down. For every hour I'm out I must recover for 3. It's a pain. As for anxiety, I think we'd be crazy not to feel that way dealing with all this. Let's face it, these are scary symptoms, and they feel life-threatening even when they're not. I wish I could give you a magic cure or answer as to how to deal with the emotional side to all this, the only problem is, I haven't figured that out myself. I guess all we can do is keep in mind that no matter how awful and scared we feel, those feelings do eventually pass, and we're back to baseline again. I just try to keep that in mind.

I've had POTS and NCS for 3 years now, but whenever I read about all the symptoms involved in my illness, I feel somewhat different. Yes, I have the typical extreme tachycardia and pre-fainting feelings (and total fainting though that's rare as I usually can stop myself by sitting) but I am mainly disabled by symptoms that I haven't heard anyone else describe. I was wondering if this sounds close to anything you all have ever experienced: I feel so tired within my body after only an hour or two of mild, boring, normal exertion. This is the main reason I cannot hold a job or even sociallize with friends, or anything else for that matter. The only way I can describe it is, I go to the grocery store, for example, and my legs feel heavy and tight and my lower back around the s.i. joint feels pushed in and my feet hurt almost immediately. Walking and being upright just exhaust me. If I'm out for an hour, by the time I get home, I swear, and this is no exaggeration, I feel in my body as if I have done a long, hard workout. I don't feel sleepy tired; I feel tired in my muscles and bones, all heavy and achey like I've been jogging for 10 hours and then worked out with weights. All I can do is lie on the bed and recover from having gone outside for an hour. I've told this to my doctor, who is a cardiologist but not a POTS specialist, and he doesn't get it at all. I don't get it, either, really, but this is how it's been for 3 years. I feel like I've had a 10 hour day, full of physical workouts, when all I've done is gone to the store, or a movie, or visited a friend, for an hour or two. For me a 2 hour day equals a 10 hour day. Why does my body feel like it's been phyically working out all day long when all I've done is leave the house? This has prevented me from being on feet almost at all and having any kind of a real life for 3 years now.

As far as depression being an issue, that may have faded over time. I know for me, I was depressed on Inderal, so I stopped it due to that and other reasons after a few weeks. With Pindolol, I was both angry and depressed, but I remained on it for 18 months, and those symptoms faded after only about a month on that drug, so I'm glad I hung in there and gave it a chance. Atenolol caused no mood changes at all, and Toprol XL, which I'm talking now, hasn't really affected my mood either. I've heard you can also balance out those moods BBs cause by adding a low dose SSRI, though that I've never tried.

I've been tachy every day, mainly in the mornings, since switching to Toprol XL. I haven't been this tachy since before going on BBs. It always calms down after the med kicks in, though; the problem arises when the med begins to wear off.

If I have too long of a day with too much going on (for me too long means over 3 to 4 hours) I will begin to feel acutely ill, with a low grade fever. I've never understood why this happens.

I had a colonoscopy 2 years ago which diagnosed my Colitis. It wasn't even close to being as bad as I had thought, and I wished I wouldn't have stressed over nothing. Here's a couple tips: ask for the Flett Phoso-Soda. It's only a tiny little bottle that fits in the palm of your hand, and that's all you have to drink! You mix it with water or ginger ale or some other clear liquid, and it has a salty taste, but nothing too gross. Two 8-oz glasses will finish off the Fleet. I drank one glass around 7 pm, another 90 minutes later, and I was done. Another tip: try having a bowel movement early that afternoon if you can. If you clean out your system BEFORE doing the prep later that evening, you will have a way, way easier experience once that Fleet soda hits your system. Also, don't deprive yourself of every food and drink if fasting makes you ill the way it does for me, because there are foods and drinks you are allowed to have on your prep day to make you more comfortable. Clear liquids like broth, ginger ale, water, of course, and foods like apple sauce and jello (no red) are allowed, or at least they were by my doctor. It makes fasting tolerable. As for the actual experience, I warned them about my POTS, and I did ok in the twilight sleep they put me in. I felt nothing, not one single thing, with the combination of versed and phenobarbital. Good luck with your procedure!

It's also helpful for the people like me, who have Celiac Disease or who have made a personal choice to avoid gluten, to know that Gatorade is gluten-free.

I've also had the shakes this week on toprol xl, mostly when I'm standing due to the tachy. The only things I like about this drug so far are its ability to control or decrease migraines, and the fact that my body feels more solid and strong on this than on Atenolol. Otherwise this is the worst BB I've ever tried, and like I said, it's so weird it doesn't last half as long as the other types of BBs since that IS what it's supposedly designed to do!

I've always done somewhat well on beta blockers, during my 3 years with POTS. I took Pindolol 5 mg daily for 2 years and stopped due to the fact it wasn't lasting nearly a full 24 hours and I was developing hypertension in between the hypotension episodes. However, for those 2 years that it was working, it was basically fine. I then tried Atenolol 25 mgs daily, which would've been great with 2 exceptions: it gave me kidney pain and swelling (rare, I know) and made my arms and legs feel weak and powerless. So now I'm on Toprol XL, for the past week, a starting dose of 25mgs daily with a plan to increase. This Toprol is the worst beta blocker I've ever tried, and what's amazing is it is the worst out of all of them at lasting 24 hours! This "extended release" tablet stops extending after only about 16 hours, and every day for the past week I've been unable to function due to a standing heart rate of 130-160 or so. My dr wants me to increase my dose or else go back to Atenolol. My question is, is it worth giving this thing a try by increasing the dose, and will a larger dose last the 24 hours or will it simply drop things even lower during the 16 hours that it does work, then just leave my system as is does now? Anyone have experiences with this drug?

It worked for me with one exception: kidney pain. I'm the only person I've ever heard of that Atenolol seems to do that to. Otherwise I liked it as far as what it did for my vital signs. It stabilized my BP and I didn't get any big highs and the lows weren't too extreme, either. It dropped the pulse signifigantly, which I loved, since tachycardia is one of my biggest problems.

Yeah it's a funny connection between POTS and Celiac/gluten intolerance, isn't it? I've been hearing that, too, and don't know why that is, but they are inter-related. I was the same as you. I went on the diet, my Celiac went into remission and my antibodies disapeared, but my POTS is worse. I haven't found a decent pill combination yet for POTS, either, so I'm still really struggling.

If it's a time released pill, wouldn't it be marked that way? I've never heard of percocet or dilaudid being time released. XL on a pill means extended length, XR means extended release, and of course a person should never chew those and should break them right on the score line, exactly in half. I've taken every pain pill known to man and always knew better than to chew them, but always broke them with no problem. I've been breaking them in two for years, but when in doubt, call a pharmacist.

Right, never chew or crush tablets without checking first. I reguarly break my tablets in half, however, with a pill cutter I purchased for a few bucks at the pharmacy, and with pain pills this is no problem. Broken in half is fine, chewing or crushing is not. As far as pain relief, I have found that Dilaudid 2 mg tablets work very well, and you can take an aspirin or Tylenol along with that since dilaudid is a pure narcotic and includes no acetaminophen. Do not up the dose of a painkiller like dialaudid on your own, though, as they are very strong.

Dr1713: Yeah, your dr is right...gluten intolerant is the correct term is you don't have the gene for Celiac. Celiac Disease is the term if you do. Of course either way you could have the damaged villi, as you did. Whether it be an intolerance or the actual disease, gluten free always feels more comfortable, so that's the way to go!

Hi there, Just wanted to say I'm new too. Not new to POTS, since I was diagnosed 3 years ago, but new to really understanding it, and taking part in message boards about the topic. I also have Celiac Disease and Colitis, and all my energy for the past 3 years has gone into mangaing those issues. Now I need to help myself to control this POTS stuff, since it is the most disabling thing in my life. Guess I'll be checking out that FAQ page, too.

Thanks everyone. I spoke with my cardiologist, finally, and he accepted my answer this time (my answer was a firm "no thanks" of course!) I wanted to avoid the test for many reasons, the main reasons being that it is terribly uncomfortable for me (I lost conciousness both times I did the test in the past and took days to recover, though no injection was ever required, as I passed out on my own) and the fact that an inconclusive test result this time could muddy the waters of my diagnosis, therby making it harder to get disability. We increased my Toprol to 37.5 mg, so we'll see how that goes. Gillian

I'm in Maryland too and I am so desperate for new, better doctors you wouldn't believe it. I'm in Rockville, in the DC area. I cannot find a decent cardiologist or arrythmia specialist to save my life, so if you could suggest someone, that'd be amazing!