stampingamy

Me too. If I don't have to directly see the light I do fine. But sunglasses don't always help when there is a bad glare in the car. It is always so refreshing when you learn other people have the same symptoms. Thanks for the post! Amy

Just call me Goldilocks. The temperature has to be just right and that is almost impossible for me to accomplish at night. I get night sweats a lot. I do the best when it is in the 50s or low 60s overnight and the windows are open and a ceiling fan is on. I sleep well then! I will wake up covered in sweat and still feel cold. It is really annoying. I try to be zen about it and look at it as an excuse to have lots of cute pajamas since they need to be washed more often, but it is frustrating. Sometimes goldbond powder helps keep me from sweating. My skin is really sensitive so the goldbond powder doesn't irritate my skin. If I am pretty sure it will be one of those nights I will sprinkle it on and that sometimes helps. But not always. It is always reassuring to know that I am not the only one with these problems! Amy

Some of your posts had me laughing out loud. The salt thing really boggles people's minds. I went to visit a girlfriend for the weekend and she knows I eat pretzels a lot. She asked what kind I wanted. I told her pretzel rods. She asked what brand. I said, whatever, just check the label for the ones with the highest amount of sodium. I also don't like to salt my food. I am really into more natural flavors. We steam vegetables a lot and I used to like them with a little fresh ground pepper. Then with my diagnosis I started adding salt to them. Now, when they aren't salted a lot they taste really blah to me. I think adding in all the salt is making me want the salt flavor in things. I guess that is good for my POTS. Amy

I have a lower body temp too, about 96-97. For me I get lots of chills and that is an indication I have a fever and 99-100 is a fever for me. Not that I am having a bad fever at 99-100, but I know I am sick. My husband sometimes laughs when i say I have a fever and it is only 99.5. I reminded him that my normal temperature is lower. That made sense to him. Have a good Labor Day weekend, Amy

Thanks so much for this poll. I am 35 and have been married 11 years. When my dear husband and I were married we thought we would wait 5 years. 5 years came and we still didn't know. Part of my concern was that I need, and can now say need without reservations, 9 hours of sleep. I don't function well after a bad night's sleep and 2 in a row, life is tough. Being tired and not feeling well makes me cranky. I don't want to be that kind of parent. I love kids and have worked with them extensively in my job so I know what it takes to be a good parent. I didn't want to shortchange a kid. Many, even my husband, would say I would be a great mom, but they aren't in my body. A few years ago we were considering baby roulette - just doing what we do and seeing what happens. Then my symptoms got worse and I was referred to a neuro and now have a dx and more information. I am currently learning more and more about managing my POTS and how that effects me and our life. When I talked to my neuro about it he didn't have a good answer - go ahead and get pregnant if you want - for some people their symptons get better, some get worse, some stay the same during pregnancy. What about after I said - same answer. My ob/gyn had NO good info. She went so far to tell my my BP is fine and that is what matters. I explained what happens when I stand and her answer was to take my BP again and say it is fine. As my husband said when I told him this story "What part of postural doesn't she understand." Needless to say I am not going back to her. The next thing my dear husband said was we would do what we needed to do to get me through a pregnancy. Being pregnant isn't the only issue - it is the energy and time it takes to raise the child. So... all that to say I have chosen at this time to not have a baby. My husband understands, but is disappointed. I do believe he understands though. Most of the time I feel good about my decision. Sometimes I worry it will be a regret. I have never been one who dreamed of her time to be a mother, but when I got married thought a child would at some point be part of the future. I agree with the post that said if you have POTS you need to really ask yourself can I do this? I admire those of you who have. It is a wonderful calling and job to be a parent and I admire you for doing it. My answer to that question asked in my head again and again has been - "no, I don't believe I can do this." I appreciate all the posts and really have needed this discussion. Amy

Hi all, I am one of the ones for whom SSRIs are likely a long term drug. I started due to clinical depression and everytime I tried to go off I couldn't. At the time I had not been diagnosed with POTS. A year ago I had to taper off my SSRI for my TTT. I look about 6 weeks to taper off. It was okay for about 2 weeks and then slowly got worse. Then when I was off for almost a week before my TTT it was AWFUL. I was anxious, very dizzy, had problems with bright lights, visual disturbances, and more and more. It was really bad. As soon as the test was over I started slowly to get back on. My neurologist is a believer that SSRIs are a good treatment for some people with POTS and I am one of them. He thinks me being on the SSRI before diagnosis delayed my symptoms from getting worse and getting to the point of diagnosis. I am not about to say this is an answer for everyone, but when I tapered off the drug for my TTT it was clear I couldn't physically function without them. Good luck with your journey. Amy

I really appreciate this post as this is something I have been wondering about. I am lucky in that as far as I can tell I have a really good neuro who trained under Cheimleski in the Cleveland area. My only concern with him is that he has told me that we need to find the right combo of medicine and non medicine treatments, follow them for a year, then start to wean them off to see if I will continue to need any of them. My treatments are salt loading, pedialyte at night, lots of fluids, SSRI, and florinef. I went from .5 mg to 1 mg in March. I am concerned that when i go in September we will want to continue to up my florinef to get my symptoms to go away completely. I don't want to continue to increase the meds. I was diagnosed about a year ago, had symptoms for years before that but they got much worse last spring. I am doing MUCH better than I was when everything flared up, but some days are bad - I trip over my own feet, I feel my heart beating so hard, I have headaches, I say the wrong words, I run into walls, visual disturbances etc.... They symptoms aren't all happening at once now and typically aren't as intense, but still happen. Part of me wants to think I can be rid of this completely, but the thinking part of my brain wants to acknowledge that this feels like for me will be a chronic condition that I need to learn to monitor. I'd love any more of your thoughts on this. Thanks, Amy

Hi all. Even though I won't wear my compression hose in the summer, I wear them as soon as it cools down. In the US I was not able to get my hose paid for by insurance but was able to get them reimbursed through my husband's flexible spending account. That at least helps some! Also, I wash mine in the washer, I just won't do hand washing, but I put them in a garmet bag, like the ones for bras. I also have heard woolite is very hard on bras and other garments like that. So, I use Ivory or Dreft, that was recommeded by the bra department at Nordstrom. I hope you are all enjoying the summer. It is getting hot in NE Ohio and my energy is lower. But, our town is having fireworks tonight and I am going to try and make it! I will be tired tomorrow. Amy

Hi. I definitely have the problem with speaking. Sometimes the words are in my brain but won't come out my mouth. Sometimes I can't begin to find the word I am looking for and talk all around it. I am a speech therapist so it really annoys me! I haven't had the eye surgery, but let us know how it goes. Amy

Well, I by no means have had dance training. I was always a bit clumsy, but when the POTS symptoms got really bad one of the things that alerted me to seek help was thinking I had cleared a doorway and then BOOM, I ran into it. I would think I was getting in my car and hit the side of the door, I could go on and on. I was tripping over my feet more, knocking my hands on shelves when I thought I was grabbing a dish, missing a ledge if I thought I was putting my foot on it. Since taking florinef, extra fluids, and salt loading I have been better. Back to my more normal clumsiness, but I still have parts of days, an entire day or a few days where I am really "off" balance wise. It is really frustrating. Happy Spring, Amy

Hi Jennifer, When I get tingly fingers, palm or feet and ankles it can last for a few minutes or be fleeting. When it happens it usually stops, then recurs off and on for a portion of the day. Sometimes massaging my hands or feet helps, sometimes it makes no difference. It is a little annoying. Good luck, Amy

Most of the time it seems as soon as I sit still I am chilly. Doesn't matter what time of year or where the thermostat is set. I love my blankets. Often when I get into bed it is really hard for me to warm up. I snuggle my dear husband and put an extra blanket on my side of the bed. Amy

Hi. I take a daily vitamin. When I am going to be with kids or others who might be sick I take echinacea. If I feel a cold coming on I take airborne. They seem to help. I have gotten a touch of colds, but not as bad as I sometimes do. Stay healthy, Amy

I was on an antidepressant before the POTS dx. I think it actually made some symptoms better and delayed dx. My doc switched me from celexa (brand name) to lexapro (generic of same drug). At first all seemed fine, but over the course of 6-8 months many things became worse - POTS symptoms, irritability, anxiety etc... This led me to my dotor who referred me to a neurologist and then the TTT and then a dx. During the course of this I insisted I be put back on the brand name celexa. I never had problems like I was having on celexa. I have been doing much better since then. I have also started salt loading, raise head of bed etc... My advice is to be sure if you are only trying generics you try the brand name or vice versa. It costs me more for my insurance, but for me it works. Even though the active ingredient is the same in a generic and brand name, what holds it together is different. The overall composition of the drug can make a big difference. Unfortunately with antidepressents you have start them slowly and then get off them slowly to know what is working for you and it can be a long process. Even though I started antidepressants for depression I think they helped my POTS symptoms long before I knew what POTS was. I tried to wean off several times and thought my depression was so bad that I just couldn't be off them. Turns out I can't be off them because of POTS. Good luck, Amy

I love how JHJD described the following - "My brain slows down." Wow, what an accurate way to describe that feeling. I understand that and everything Bamagirl wrote. I felt like I could have written that. Mine tends to happen one thing at a time, first one, then another a day or so later, then another, then another, then another and then it is all happening at once. It is so good to have this support group! Amy

Hi. My neurologist wants me to try water jogging. Thankfully I am able to exercise, but he thinks doing this will help improve my circulation for longer periods. I have seen it on several handouts on dealing with POTS. Apparently the water surrounding you helps in a way that just moving on land doesn't. I have the handout and the description as to why it works in my medical file, but that is in another room and I don't have the energy to get up and get it right now. I don't enjoy stuff like that and can't listen to my iPod while if I am in the water! I feel like I am exercising on land when I am able and just don't have the time or energy to do another thing, especially one I won't enjoy. Have any of you tried it? What were the results? Thanks and Happy Days, Amy

The comment by Mighty Mouse about constantly moving is great and so true. I too can't stand still. I used to think I was just fidgety. During my TTT while standing reclined I kept moving my legs. After about 10 minutes the tech said to stop moving my legs. I said "i can't." He asked why, I said "I don't know. I just can't." He said I needed to keep my legs still. Within 2 minutes I fainted. I found this really interesting. I knew I couldn't hold still, but didn't know that my body had a reason for it and knew it shouldn't hold still. My neurologist encourages exercising as it helps your circulation and keeps blood from pooling. Happy Days, Amy

Congratulations on quitting smoking! That is FANTASTIC. I'm glad you were able to cut down on your meds too. Amazing. Good for you! Amy

Wow. I never thought about having POTS and that affecting going to the dentist. I have a cleaning coming up. I would appreciate any info about things to be aware of when going to the dentist for a cleaning, cavity filling, etc... Thanks for the help. Amy

Hi all. Just call me Goldilocks. I like things just right, not too hot, not too cold. The trouble, there isn't an exact temp that is perfect for me, varies day to day, well; hour to hour. I also have a hard time cooling off when I get hot and warming up when I get cold. My hands and feel are cold almost year round. Happy Days, Amy

My Neurologist has me drinking Pedialyte each night. MANY fewer calories than Gatorade. Though it may not be as tasty. The grape and apple flavor have done pretty well for me. He also said that the amounts of the various ingredients in the Pedialyte work better in the body for regulation such as this than the Gatorade would, at least for me. I am off to find a snack of salty pretzels! Amy

It has been interesting reading this. I must admit I understand how you are feeling cariactec, that POTS isn't for you a dx, but a list of symptoms. That is what a syndrome is - a copilation of various symptoms that go together and it is a diagnosis. For example - Down Syndrome, Rett Syndrome, Angelman Syndrome, I am an SLP in the special needs field and could list syndromes that are true diagnoses for a few paragraphs. I always have said that every year I get a client with a syndrome I have never heard of and need to research. This year it was mine - POTS. A syndrome is a compilation of symptoms that when they always occur together becomes the diagnosis. Within any syndrome there is the range of experiencing the symptoms in varying degrees. People who have the syndrome may not have all the symptoms noted within the syndrome or may have symptoms that are not typically in the syndrome but have no other reason they have that symptom. Typically one needs to have a certain number of the symptoms to have the syndrome as the diagnosis or the syndrome has a major symptom or test result that must be present. For POTS, the TTT seems to be the definitive. Also from an insurance perspective it has a diagnostic code that makes it a diagnosis. This is not to say you shouldn't seek 2nd opinions. But though this might help in understanding. I do wish it had a name other than POTS. I agree with others who have mentioned in other posts that it is hard to be taken seriously. But, that is for another string of posts. Happy Holidays, Amy

ME TOO! It is one of the symptoms I had that got my PCP to refer me to a specialist. He was concerned about MS, thankfully it wasn't that. But I would think I would see a bug in my peripheral vision and turn it would be a shadow or a piece of lint. I had a meeting one day and there was a window in my peripheral vision. I swore there was a person out there waving at us, it was only a branch. It is the one symptom my neurologist said isn't POTS, but was just something in the fluid in my eye. But before I got to him I had a very thorough eye exam and my opthomologist didn't see anything. So, I still think it is POTS related. Happy Days, Amy

This is so interesting. It is hard to be feeling tired or have some energy and most of it isn't related to how much sleep I had or how well I slept. I actually have started florinef and have been feeling much better this week (could be coincidence), but there are definitely times that I have a very hard time keeping my eyes open and it is all I can do to remember my name. What a weird illness. Happy days to all! Amy

Very interesting that there was something on the FRONT PAGE of WebMd today. When I got diagnosed I put all sorts of terms in to WebMd and found nothing. That is good. I was telling a girlfriend about the Yellow Wiggle. She got the Wiggles confused with Weeble Woobles. I explained the difference and then remarked that there should be no confusion between the Wiggles and Weeble Woobles. If the Wiggle were a Weeble Wooble, he would wooble, but NOT FALL DOWN. Ha ha. It will be interesting if there is more follow up on the story on the Today Show. Happy Days to all, Amy