yogini

From what I have read, most people with POTS give birth to healthy children. While you raise some important factors to consider, I don't think this is a topic that can be generalized. You have to remember that there are people with varying degrees of POTS and many whose POTS is not genetically related. I am sorry your daughter is having a tough time. Although she feels that life with POTS may not be worth living, I think most people on this board would disagree. This site is filled with dysautonima patients who, despite their medical conditions, lead happy and productive lives. And science is constantly evolving to make our lives better. I don't think we necessarily encourage people to have children on this site, rather we provide much-needed support for those who have made the decision to have children. In the end I think each person needs to make the decision based upon their own circumstances, and I would not judge anyone for their decision.

There is definitely some overlap between the symptoms and treatment for POTS and IST. Here is a link to a recent post with a good article discussing both conditions. http://dinet.ipbhost.com/index.php?showtop...resting+article If you think you may have POTS, you may want to ask your doctor for a tilt test. -Rita

I would check with your dr, because I think it really depends on your BP. I have different compressions, which I wear on different days b/c my BP fluctuates a lot. My BP is usually at least 90/60, so my docs have told me I don't really need the 30-40 (tho I have some and use it anyway in the winter). I did feel really weird when I first started wearing the 30-40 hose, but that went away in a week or so. I have tried a few different brands of hose and found the Jobst opaque to be the most comfortable. They are too hot for me to wear in the summer, tho - sheer is much better!

Radha, I have been thinking about your posts a lot. I agree with Corina that it is important for you to see a doctor. And like Steph, I don't mean to interfere in any way, but I did a web search and found a site for an organization of home care doctors: http://www.aahcp.org/physicianreferral.shtml#NY I'm not sure whether your area is listed (if not, I would call them) or even if the doctors are any good, but I think it would be worth a try. Maybe you could get a home doc to coordinate with Dr. Grubb or to even give you something like saline that will temporarily help you feel better enough to leave home. If this link isn't helpful to you - let me know. I would be happy to search some more if you wanted. As for the beta blockers, usually the worst side effects for me have gone down within a week of increasing the dose. Feel better soon, Rita

Radha, If your legs are turning purple when you put them down, compression hose could really help with that. It sounds like you're trying almost everything you can. Hang in there. -Rita

Hi Em, I have strings of terrible insomnia where I don't sleep all night. This may sound silly but I bought a sleep mask and some relaxation and sleep CDs. They really do help put me to sleep (or if I can't sleep, at least I feel relaxed through the night, which is a bit better than tossing and turning). The mask is great for headaches, too. I try to eat a few hours before bedtime and stay active, or at least seated up until I am ready to call it a nite. I also find that if I stay in bed until morning, even if I am wide awake, I ususally catch at least an hr or two at the at some point. These things help a bit, but if you are reacting to ending the med, then you will probably feel a lot better once it leaves your system. I know my body goes crazy each time I change my meds. So just wanted to offer you some encouragement to hang in there... Hope you catch some serious Zzzz's sooon. Signed, Sleepless in NY

Radha, Just wanted to chime in and say counseling can be a big help. I started last week and I can tell you that already it feels like a ton of bricks have been lifted from my shoulders. I think it's not unusual for therapists to do appointments over the phone. I have a friend who moved to Japan but she still uses a therapist in NY by phone. My own therapist started asking me some strange questions about my health, but then she told me that she has another patient with low blood pressure and lots of other crazy problems who has been undiagnosed for a few years. So she asked for my doctors' names and it might actually help her other patient. So you never know, the therapist may be able to connect you with other medical doctors in your area who can help. I think Steph has some good advice too. Rita

Ernie, Good luck with your appointment! I agree with Emily - I hope you get all the answers you want and then some. Also, congratulations on participating in the conference. I didn't get a chance to reply to your other post. Radha, I am sorry you aren't feeling better. Since you have blood volume issues, I was wondering whether you have ever tried getting saline IV therapy? Just a thought. -Rita

I think florinef reduces calcium absorption, so maybe that relates to the dental problems. Sue, good luck - keep us posted on how it goes!

I had a lot of trouble weaning off florinef. It took me 3 tries over several months. I kept getting bad flare ups of symptoms. But I had to keep trying b/c my BP was getting too high. I finally did it 1/4 pill per month and it worked. I have been florinef-free for 6 months! I may be an extreme case. I would say reduce as slowly as you can and hang in there if your symptoms act up. The symptoms will probably go back down again, though it may take a few weeks.

I'm so sorry you have to deal with this. I had a couple of breast lumps (fortunately benign) removed back in college. So I can imagine a little of what you're going thru. Please take care of yourself and keep us posted on how you're doing. You'll be in my thoughts.

Traci, I am sorry for what you're going thru and can totally relate. I have seen a few of the docs who are listed on potsplace.com and ndrf. Some of them were OK, but I can tell you that some of them did not know much about it even though they are listed as autonomic specialists! I followed some very bad advice from one of the drs who told me I was fine and to stop my meds. And I wound up in the hospital because of it. I agree with the others that it might make sense to get a second opinion. A doctor should confirm your diagnosis, but an increase of HR of 30 points or more would seem to mean POTS. Your BP does not have to drop. Did your specialist give you any ideas on what to do about the increase in HR? Even if he's saying it's not autonomic problem, a 50 point increase should mean something... -Rita

Morgan, I'm with Emily and Nina...I really hope you're on your way to finding something here...something for which they can give you meds. Don't give up, we're all behind you! Let us know how it goes. -Rita

This is a tough topic, which has been discussed a lot in the past. Here are some of the links to the prior discussions. http://dinet.ipbhost.com/index.php?showtopic=894&hl=recover http://dinet.ipbhost.com/index.php?showtopic=388 http://dinet.ipbhost.com/index.php?showtopic=2229&hl=recover Before I was diagnosed, a relative who is a cardiologist told me about POTS and said that many of the patients he sees get better within a year or two. He hadn't examined me and would have had no reason to string me along. So I do think think that lots of people do get better (and many of them might never have been serious enough to come to forums like this in the first place). Many people on this board have seen improvement and are pretty functional- I am one of them, at least for the time being. There also people that got better for a few years, only to get sick again, so there is always that possibility. I think that it depends in part on how you got POTS and also whether you have any other medical conditions. It seems that lots of folks on this board have other conditions such as EDS, fibromyalgia, GI issues, Lyme disease, etc. Nina/Michelle, I was wondering whether it might be helpful to add this as a pinned topic if it isn't already included? Admittedly it's hard to read it each time it comes up... -Rita

Hi Krazynorth, Sorry you're feeling tired. Fatigue has definitely been one of my worst symptoms . I am not sure what meds you are on, but some of the meds we take (like beta blockers) make us more tired. I think it makes sense to keep exercising, but as Sunfish said without killing yourself. The thing with exercise is that it might take a few months for you to start feeling the benefits. Seriously, I started exercising in January and started feeling better in April. I have kept trying to increase the amount of exercise every few weeks and this has seemed to work OK. Also, I take multivitamins, eat small meals frequently, eat lots of protein and veggies and cut down on carbs and sugar. Many of us can't handle too much caffeine, but one Diet Coke works to get me thru the afternoon. And of course salt, fluids and compression hose help too. You also may want to search on the forum because this topic has been discussed a lot. There are also some supplements/meds you can take for energy, but I think most of us just stick to diet and exercise. Over time they have helped to give me a lot more energy. I am still nowhere near where I used to be pre-POTS, but I think some fatigue is unfortunately part of the territory. -Rita

I take atenolol. I start to feel the difference within 20 minutes but it takes an hr for it to reach its full effect on me.

I don't think I've had twitching, but I did have difficulty speaking for the first week or 2 when I got POTS. I know exactly how you feel - it's like the words were right there but I couldn't get them out. In my case I think I didn't have enough blood going to my head. But yours might not be the same - good idea to get it checked out soon.... -Rita

Ernie, I am glad you're feeling well enough to try some upright exercise! I worked out mostly on an elliptical machine for years before POTS. I think it's the best machine for a full body work out. I am dying for the day I can get back on it and work off my big booty! But I think the treadmill would be a lot more user-friendly now that I have POTS. It's a lot more versatile than the elliptical. You can change the speeds, angles, etc., whereas on the eliptical, there are fewer options. I also think that the elliptical requires a lot more strength, even at the lower levels. The treadmill would better allow you to start off slowly and then move up. Personally, I haven't tried to exercise in an upright position, other than yoga and walking. I mostly use a small peddle bike or I do pilates. I agree with Nina, pilates is the best! I just have a DVD which cost only $10 or $15 and I think it's helped my symptoms a lot. I am sure you'll get a lot of different opinions on this. Let us know what you choose. -Rita

Persephone, Yikes! Did the report say that your actual HR and BP were normal, or just the "circadian rhythm"? (I've never heard of that before.) In any case, that's disappointing. Some of those test results can be hard to understand, even for docs if they're not familiar w/ POTS. I know when I showed my NY docs the report from the Mayo Clinic, they had no idea what it meant. So maybe there is a little hope that the report actually does show something is wrong, but your doc doesn't understand it. Hopefully you'll get a full explanation when you meet with them in Sept. It sounds like you have a good attitude. Try to hang in there. For your appointment in Sept, you could get copies of all of your hospital records which show abnormal HR and/or BP and also keep a log of your stats at home. Maybe they will be able to prescribe a treatment based upon that info? -Rita P.S. I know what you mean about the heat. I went out for an hr on Monday and got the worst symptoms I've had in months. It's 3 days later and I still haven't recovered. Never again!

I have some stretch marks and definitely don't have EDS. There are some products ont he market these days to reduce strech marks, like Mederma, I looked into this once, but I think you have to put it on a few times a day for 3 months. I just don't have the patience to do it, but it's supposed to help a lot.

Hi, I would definitely get it checked out. But I think visual disturbances are pretty common with POTS. I have had vitreous floaters, graying out and blurriness. When I had my vision tested with these symptoms, it was normal. The symptoms have gotten better for me. I used to have them every day, but now it's just some days. Salt, compression hose and fluids have helped me for this. Good luck, Rita

I'm on 37.5 mg atenolol. I think it's one of the more common BBs and a lot of others on the board take it too. My BP has always been on the low side of normal, 90/60. Surprisingly, atenolol didn't do anything to lower it. I started off taking it with florinef, but I have since stopped the florinef. I am able to keep up my BP with fluids, salt and, when it's not to hot outside, compression hose. I don't have asthma. If anything, I was getting short of breath from the tachycardia and the atenolol helped with that. I did get really tired at first, but after being on it for a little over a year, my body has adjusted and I have more energy. Atenolol has been a lifesaver for me, but everyone is different. Hope it works as well for you!

Hi Rita, from another Rita! Welcome to the board. MY situation is similar to Jessica. I was diagnosed with an inner ear problem after POTS. I went thru lots of physical therapy. The dizziness should've gone away after the therapy, but they came back full force. So then they agreed that it was POTS and not inner ear. I still get the dizziness and I have had lots of problems walking. I used to walk really really slow, and now I just walk at an OK tempo. Do you get a spinning sensation? I feel like the ground is moving up and down or tilting when I walk, although this has gotten better over time. The thing that has helped the most is practicing walking. Feel better, Rita

Sorry to be graphic, but I do get bad gas sometimes. And it does seem to make my HR worse. I have woken up really tachy in the middle of the night at the same time that I was having stomach problems. When I have pain, pressure or burning sensations in my stomach/chest area, it's hard to tell sometimes whether the symptoms are POTS or stomach related. And to make things more confusing, stomach and POTS symptoms both get worse after eating. I take Prevacid and Gas-X sometimes and also try to cut down on foods that give me reflux or gas. I don't get the general increase in symptoms or the squeezing feeling that you're talking about, though. I would guess that these aren't caused by the gas, though I am not sure. Another thought - often these weird combinations of symptoms are side effects from meds. I'm not sure what you're taking, but you may want to check on this with your doctor.

Good luck with the nutritionist and keep us posted. After a year and a half of POTS, I am pretty sure that there is no "magic cure." But you can get better - it will happen slowly over time. A few people on this site have done it through nutrition, so it's worth a try. I haven't tried any alternative methods, but I have been taking better vitamins recently and do feel like I have fewer symptoms and more energy. Hope it helps! -Rita