yogini

I've had LTD through work since before I got sick which covers part of my salary. My employer pays for part of the premium and I pay for the rest (pre-tax). I was even able to increase the amount of coverage when I got POTS, but since I was out on STD for a few months when I first got ill, there was a whole year before the increase applied to any disability caused by POTS. Luckily that year is now over. I also looked into private LTD to bring me up to 100%, but was told that no one would sell me a policy covering POTS. If it is any comfort to you, most of the literature out there says that most POTS patients are not disabled in the long run and are able to work. I never paid attention to this before it was too late, but apparently it's smart for single people w/o kids to get private LTD - it's the equivalent of life insurance for people who are married or who have kids.

Thanks guys. I knew you'd understand. It's so sad that on top everything else that we struggle with, we have to justify ourselves to perfect strangers. Pat, it made my day too!

My calf muscles feel extremely sore sometimes after exercising, but I don't feel sore all over. Weights make my POTS worse too - I can only use low weight dumbells when sitting or lying on the floor. It might make sense to try a lighter exercise and see if the pain goes away.

I got a tetanus shot at the dr's this morning when I had my annual physical. I started to feel a bit dizzy right after, which got worse when I had to wait in the 90+ degree heat for the bus to get to work. When I got on the bus, the only seats available were the ones for the elderly and disabled - you are supposed to offer them up to the elderly/disabled if there are no other seats left. I never sit in those unless I really need to sit down, which I did. Of course the moment I did, two elderly women sitting across from me started making comments about how young people are really rude to sit in these seats and never offer them up. (Mind you, while they were making these comments THERE WERE STILL A COUPLE OF EMPTY SEATS on the bus! Even if there weren't, at that point I had no choice but to sit down.) I sat there and listened to them go on and on for a few minutes, and then couldn't handle it any longer. I very calmly said, "Excuse me, I have an illness and I am feeling dizzy. I need to sit down." The women told me that they were only talking among themselves, and that their comments weren't directed at me. I responded by saying that it was not very nice of them to talk so loudly and it really seemed they WERE talking about me. At that point, the two ladies sitting on either side of me chimed in to support me - they were maybe in their 50s and felt that the snide remarks were also being directed at them. We had the last word, and I think the two culprits learned their lesson. I bonded with my new friends, and they both told me that they hoped I felt better as they were getting off. Normally I get really angry or burst into tears in these types of situations - either that or I'm too stunned to think of the right thing to say. I'm proud that for once I was able to stay calm and stand up for myself. I thought you'd all appreciate the story since many of you have had similar experiences!

Sorry you're having a tough time. Do you normally work for 5 hr stretches? Has your BP gone too low? One thing I have learned (the hard way) is to try and nip things off at the bud. Whenever you start to feel funny, it might help to head straight home and go to bed. Often pushing yourself to stay active makes things even worse.

Thanks, guys. Luckily, I don't have EDS or fibro. This pain seems to occur when I touch a particular spot or move in the wrong way, except for the dull pain which is kind of constant. One thing I forgot to mention is that I had a couple of benign breast lumps removed in college - which makes me worry a bit, although I can't find any now. Doctorguest, I looked up costochondritis and that could well be it. I appreciate your advice and, as an attorney, your disclaimers too!

Has there been a study done on this? Most of the advice out there is meant for regular folks who tend to have high BP. So when they say that garlic is good for lowering BP, this is how regular folks react to it. Breathing exercises and beta blockers are also generally thought to lower BP, but I have found that they have the effect of stabilizing and supporting my low BP. So unless a study has been done specifically for POTS, I wouldn't worry too much about garlic...besides, it's just too yummy for me to think about giving up! The only other thing I can think of is that heavy, garlicky meals (such as pasta) could cause pooling to the stomach or aggrevate GI problems for us.

The Dinet and ndrf sites have citations of recent articles - and the NDRF manual is also a fabulous source of info. In terms of what POTS patients want others to know about the condition, there are a lot of good ideas under Michelle's topic about the documentary. Good luck!

A couple of weeks ago, I started having severe breast pain mostly when I slept the wrong way. Although it has calmed down a lot, it is still coming and going and I am now also feeling a dull pain in my rib most of the time. I'm just wondering whether any of you have had this? Although it may POTS-related, it doesn't seem like it's coming from my heart and I am hoping it's not my heart b/c all of my echos and other heart-related tests (as recently as Feb) have come back normal. I read about breast pain on Mayo's website and it said that it is usually harmless. But still weird and scary to happen out of the blue....luckily I have a checkup with my GP on Tuesday, so I can ask him then!

Hi. Sorry you're having such a rough time. Can you get some Ambien from your dr to help you sleep and give your body more time to get used to the BB?

This is pretty common. Sometimes when I exercise, I feel fine when exercising, then wake up in the middle of the night with tachycardia - either that or wake up really sick the next morning or even two days later. I'm not sure what causes the delay. It's scary, because you never know if you're overdoing it until it's too late. What helped me was to build up my exercise time slowly.

I think docs often give a diagnosis of depression when a patient's symptoms don't fit neatly into a box - I've known people with other rare conditions that were told it was just "depression" or "anxiety". And I agree with cardiactec and dawn - depression would be a normal feeling for patients who are seriouisly ill, especially if they are having trouble getting any doc to take them seriously - which unfortunately makes it easier for the doctors to attribute the physical symptoms to depression.

I started to sleep much better once I reduced my dose of BB. I would not be surprised if insomnia is a side effect. How long have you been taking a BB? It takes a while to adjust to it. The first weeks is the absolute worst and it continues to get better after that. After taking it for months/years, the side effects really started to go away. I would encourage you to stick with it if you can. Most POTS meds seem to have an adjustment period - believe it or not many are even worse than the BBs! It could be worth it if you can manage to hang in there.

I was really interested to read this discussion. I have been taking a 1/2 or 1/4 pill of atenolol for the past couple of years. I discovered this was the right dose for me by accident. I was trying to wean off atenolol and could not go further when I got down to 1./2. I was extremely dizzy and tired on higher doses of atenolol and can funtion so much better on a lower dose. I wish I had known to start off on a lower dose off the bat. My cardio does have a couple of other (non-POTS) patients that take baby doses, but this is the first time that I'm hearing an explanation for it. I wish more doctors would know to start patients more slowly. Since many people aren't able to take BBs, I wonder how many are "missing out" because they took too big a dose.

Hi Linda, I don't know a ton about CFS, but I believe it's more than just being tired all of the time - I think it involves a "syndrome" of other symptoms, such as fevers, sore throat, etc. Most people with POTS are probably tired a lot, but I do think CFS is separate from POTS...though many people have both conditions, and both conditions can have a common cause. Confusing, I know! -Rita

I am often very dizzy with normal BP. I think dizziness is just a symptom of POTS (as is the numbness). I'm not sure that there is more of an explanation right now. I do feel more dizziness when I have my period, if I am run down or if I am chaning my meds. But sometimes there is no rhyme or reason...just ol' POTS.

Thanks guys and Melissa, good to see you back on the board. Emergen-C doesn't have enough salt for me and it also has sugar or aspartame, which I'm trying to stay away from. Also, I take a high potency multi-vitamin, so don't want a product with too many extra vitamins. Currently I drink an organic broth which has 750 mg of sodium per cup, but is hard on my tastebuds and stomach and not very portable. Also I drink Smartwater, which has trace amounts of electrolytes. But I'd be thrilled if one of these electrolyte tablets works - I will have to check them out and report back.

The DINET Spring Newsletter mentions S!Caps, which are electrolyte tablets buffered for your stomach. I've tried and could not tolerate Thermotabs, which are also buffered. I am wondering whether the S!Caps are any different? Also, in Googling S!Caps, I came across these other electrolyte tablets: Nuun (www.nuun.com) and Zym (www.gozym.com). Both of these are tablets for low-cal electolyte drinks with little or no sugar. (These are just two brands I found, but there may be others too.) I feel like I've been looking for something like this for 3 years. Electrolytes without sugar seems perfect for POTS. Before I bought any of these, I just wanted to see whether any of you had tried them?

Thanks, Rachel.

Thanks, Michelle. I agree - she looks so "normal". The story mentions that she has her own Youtube site on POTS. Do you have the adress for it? I'd love to check it out...

If you're getting a headach an hr later, it could be that your BP is going up too high. Is there a big difference between your BP before you take your midodrine and at the time you get the headache? If your BP is going up, this is a good thing - I know my BP went up on florinef once I started improving. How much midodrine are you taking? I only take 1/2 of a 2.5 mg pill, as needed.

Your post caught my eye b/c I didn't know what a ladder was either! Like many of the others, I use lots and lots of clear nailpolish to patch up my runs. I keep wearing my compression hose well after it has runs. Under long pants you can't really tell the difference anyway. I think having a run in the foot may not affect the compression, since I believe it starts at the ankle. Some people buy footless hose, and I believe I even remember reading that someone cut off the feet of their hose!

All I can say is: HUH?? Hypotension seems to be listed as a symptom of POTS in most everything I've read, not to mention the countless accounts of it here on the forum. I wonder whether these doctors would agree with the use of BP-increasing drugs, such as florinef and midodrine, to treat POTS...they seem to be commonly prescribed and helpful to so many of us...

I also had this when my POTS was at its worst. Maybe our bodies move to keep our BP and circulation up.

Hi. Have you tried compression stockings or midodrine?