stampingamy

I have noticed this too. Stairs can be so difficult. Even 1 flight. I'm glad I'm not alone. Amy

I am sorry yoga didn't work for some of you, but I have had incredible benefits from it. Yoga teachers - good ones - are very understanding if you can't do a pose in a traditional way or for as long as they request you hold it. I stand more slowly too, but have found that the flow of yoga has helped me with POTS. It puts me in a better state of mind, has made me more aware of how my body is feeling and things I can do to help it feel better sometimes. Good instructors also focus on awareness of what your body can do and can not do and to accept that. Some teachers are very excited about working towards a headstand and I won't be doing that. My arms sometimes get tingly when I hold them in Warrior 1 or 2. Some instructors have told me it is because my shoulders are tight. I tell some of the yoga instructors what is going on, but some I just nod and do my own thing. I think it is like so many other things for those of us with POTS. Some things are great helpers for some and the same thing for others is bad. Keep feeling well everyone, Amy

I agree with this comment completely. Talk to HR. I have let them know a lot of stuff and I think it has been very helpful.

Thanks for posting this. I have been meaning to ask about this for awhile. When I wake up, if I don't get out of bed right away I start to smell coffee. However, we don't set the automatic coffee maker. I like coffee a lot - so I thought for awhile it was just me really wanting some coffee. However, after talking to another POTS friend I found out she has phantom smells too. I have another one, but the brain fog isn't letting me remember it right now. Amy

All I can tell you is my experience. I have been better since being on Florinef - .05. Thankfully I haven't had to increase from there. I do still have days where I am having all the "fun" POTS symptoms. But it is fewer and farther between. Even this summer when I haven't been doing as well, I console myself with thinking I am not as bad as before being treated. It could be you are having a bad spell and it is a coincidence. Good luck. Amy

thanks everyone!

Hi all, I saw my neuro yesterday. I've been having a rough summer. Ughh... I guess it is to be expected with the heat, but last summer wasn't as bad. He recommended I take a salt tablet with each meal. I can't find them. Where do you find your salt tablets??? Do you order them online? Get them at a sporting goods store? CVS could order them for me, but since they looked at me like I had 3 heads when I asked for them I really don't want to give them my money. Any thoughts??? Also can you tell me what they are called? do they have a name other than Salt Tablets? Thanks for your help! Amy

That doesn't sound right to me at all. When I did the testing at the ANS Lab in Cleveland, but at University Hospitals (they had the first lab in the country) they were very insistent that unless I truly would not be able to function at all that all meds be stopped and I was off them for at least 1 full week - antidepressants, allergy meds, vitamins. Everything but my birth control pill. They would do the testing if I stayed on the meds, but said the results would be more accurate if I stopped them. Good luck with the testing, Amy

We just visiting Colorado Springs and Estes Park and Denver. I live at about 1,000 feet. One good thing was the heat in CO is a dry heat so I could tolerate that much better. I agree - give your body a few days to adjust. I did okay unless I was trying to walk more quickly. I did find I was tired, but that could have been the 2 hour time change too. It was hard to breath as deeply as I normally can, but as long as I knew I had to move more slowly I really enjoyed the trip. I do think if I had to be functioning for work I would have wanted a few days to just hang out, relax and let my body adjust. Good luck and keep us posted. Amy

Stuttering is as much a speech problem as a psychological problem. Stress really makes a difference in the symptoms. Regarding the original post - I know I really want to relate everything to POTS at times, so much fits, but I still think they are unrelated, or at least to this point not well studied and documented. However, if one is already a stutterer, being nervous about symptoms of POTS could aggrevate (I can't spell that right now) it. I know when I am having a really clumsy day and am around people I don't know as well I get more annoyed and frustrated by my symptoms and not only does that get worse, but so does everything else. I would say kids (6-7) and older and adults who stutter parts of words (st, n, m, a, tr etc...) and not the whole word are more likely to have issues with true stuttering. Kids are a different story. Love them! Kids 2-5 have been known to have bouts of stuttering during periods of large language growth. The age range could be wider depending on overall language development. Their mouth can't keep up with their brain sending them the info. These kids tend to stutter more whole words than the initial part of the word and show very little to NO frustration that they are doing it. It is more likely bothering the conversation partner. The best thing is to ignore it. If it doesn't bother your child to finish her/his sentence do it, just don't appear frustrated with what is happening - you were right on! Try to go with the flow. And even if your child - or you - is a stutterer you can rest assured it doesn't affect intelligence or ability to succeed. Check out www.stutteringhelp.org. There are lots of techniques for dealing with stuttering - different things work for different people. Making sure you take a breath and begin to speak after airflow has started and try to keep airflow going. Using devices to help control the speed work. Using different words can work too - with POTS I know I couldn't keep up with that one, I can barely find one word I need! Ha ha. If you are being bothered by your stutter (or your child is) it can really help to see an SLP. Kids 3 and older are eligible for free services through the school system if they qualify. The parent has the right to request an evaluation. There are also many private (not in schools) and hospital and clinic SLPs. jbrian00 - it sounds like you handle it very successfully! But if you are bothered try to find an SLP to give you some techniques to try. It may be you didn't need them before, but with dealing with more in your life - POTS - you might need a little more help. Again - feel free to PM me about anything! Amy

I don't always know this time of year if my symptoms are dehydration or heat - likely related. I don't do gatorade because of all the sugar, I drink pedialyte. My neuro also says the balance of sodium and electrolytes is better for what I need. If I drank gatorade everyday I would gain weight due to the sugar. But that is just me. I find when I am really tired the pedialyte acts like a huge boost for me. I can be really wiped and the pedialyte gives me a bit of a boost. I usually drink it late in the afternoon when I am starting to really tire. However, I do better in the morning than afternoon. Mornings are actually my best time, I know this isn't the case for a lot of you. Amy

Interesting question. I'm a speech pathologist and being very aware of language issues word finding problems were one of the first things I noticed and concerned me. They are different problems - word finding and stuttering. However, under periods of stress anyone can be known to have stuttering behaviors though not truly be a stutterer. However, my guess is that you are experiencing stuttering due to stress more than anything. If you are repeating whole words more than parts of the word that is a sign it is a stress related stutter and not a true stuttering problem. If you want to PM me, feel free. By the way - the language centers of the brain are in the L hemisphere. Amy

I wasn't given a number to follow, but told by my neuro to salt everything. Just go for it and not worry about the adverse warnings of too much salt. So I have been doing that. I also drink pedialyte every night and when I buy snacks I compare the labels for which ones have the most sodium. I had a bunch of blood taken as part of a routine physical. It was all good, except my sodium level was still below normal. I just had to laugh at that. Interesting condition, this POTS. Amy

Drains all my energy and makes my muscles weak and me feel really cranky. We are unusually hot and humid for NE Ohio. Like most of you I am okay until it hits 75 then I have to be careful. I agree with DelphicDragon. Our bodies don't handle changes in temperature - especially drastic. Oh, like I was saying, it is unusually hot and humid here. One of the lucky things about moving from Winston-Salem, NC to the Cleveland area was less heat and humidity. We usually only have 2-3 dreadful weeks where just getting to and from the car is draining. I have been more proactive with the early onset of heat and reduced my activities, but I find I still have little energy and am feeling yucky. At these times it is hard to not get down with all this POTS junk. At least I am not alone. Stay cool, Amy

I couldn't agree with you more. I started having symptoms when we lived in NC. We were in Ohio 2 years when things got worse and I finally got a doc to refer to a neurologist. I really felt at the time like we were really supposed to have moved to Ohio. I am really thankful for it. amy

Thanks everyone! I appreciate the responses! Amy

Hi all, I live in Cleveland and my sister, 31, lives in Cincinnati. She is beginning to think she has POTS as well. She has near syncope experiences. Does anyone have a good doctor in Cincinnati. I looked on the physician list on the DINET site and the Autonomic Association's site and there is no one listed in Cincinnati. Please let me know if you know of someone in that area! Thanks! Amy

This is so interesting! I wore contacts and over the past 5 years I would increase complaints to my eye doc about none being comfortable. they dry out so quickly and none of the brands were great. Each year we'd find one that worked - well, it worked enough. But I couldn't really tolerate them past 6 pm. Each year I considered Lasik more seriously. My eye doc didn't know about POTS, but was more interested than some doctors I have seen. She even asks how it is all going. Anyway.... I was an excellent candidate for Lasik and had the procedure mid-January. My corneas were thick enough and my tear production was normal. I am so glad I did it. My eyes feel great, dry when I wake up in the morning. I am healing slower than most, but healing. My eye doc can still see the flap and she normally can't by now. I am supposed to put drops in every few hours. Most days I am okay with it, but it is hard to remember as my eyes feel great. I never knew the ANS controlled tears. So much still to learn. Amy

The 504 plan may be the way to go. As you have heard, it is designed to help kids that don't qualify for an IEP but who also need special accommodations. However, when I was in NC we had a few students with juvenile diabetes and other issues that affected them more than others as Other Health Impaired. The gave them an IEP. This may not work if a special ed teacher isn't needed, but is another avenue to pursue. Good luck. Amy

It is as if I could have written your email, Lina. I have the same issue sometimes. I also have problems when the sun reflects on the dash in the car and it is bright. Fall and winter are harder as the sun sets sooner and I am driving home from work about that time. You are not alone! Amy

Just call me Goldilocks. I have to have it just right. If I get too cold it takes a long time to warm up. Adding layers doesn't help because I still have exposed skin. Thankfully for me I can usually get through whatever I am doing as I am in several places a day. But I do find that the more my body works to keep me warm or cool the more fatigued I am at the end of the day. Just one of the fun things to figure out with this! Amy

Hi all, I am going to my neurologist tomorrow for a follow up appointment. I was talking to my husband about how I've been doing. Overall I am doing better with treatment - pedialyte, florinef, not overdoing it. I still have bad days with dizziness, headaches, word finding, clumsiness, etc... but overall I am better. Here is what is bothering me. I can't find a reason that some days are bad. I feel like a bad day should correspond with bad blood pressure readings. But it doesn't. Does anyone know what goes on with our autonomic nervous system that makes a bad day bad and a good day good? I really feel like I should be able to find a pattern and therefore be able to figure out how to hopefully avoid bad days. Is there any rhyme or reason to any of this???? Amy

It took me about 3 weeks to get over the headaches. They weren't constant, but close enough. they did go away. I started on .05 1x a day. When I went back to the neuro and he wanted to up it to .1 I was so frustrated. I told him about the headaches and he had me do 3/4 a pill for a few weeks and then the entire .1 dose. I did get some headaches but not as often and they didn't last as long. Hope that helps. Amy

I too have POTS, Peripheral Neuropathy and Small Fiber Neuropathy. The small fiber neuropathy means that I have nerve damage in the small fibers of my muscles and that contributes to some of my symptoms. My neuro didn't know which came first - chicken or egg phenomenon. The neuropathy issues were diagnosed before the TTT. For awhile I wore patches to numb my ankles because my feet would feel tingly. It happened at night a lot and I had trouble falling asleep as I was bothered by it. However, when they started treating the POTS these other symptoms have gotten better too. It still happens, just not as often. I don't know if that means the treatment has helped my nerves regenerate. Soon after I was diagnosed there was a peripheral neuropathy seminar in my town at a medical center. A lot of what he talked about was finding the cause of the neuropathy so one could treat it and then the nerves would start to regenerate, but it does happen slowly. When I asked him about POTS - he knew about it and said that yes, finding the cause could help, but neuropathies along with POTS are usually treated differently than ones caused by things such as diabetes. Amy

I do some of the same things you are all writing about here. I am so sorry we have to deal with this, but I am so glad to hear I am not the only one. Meeting new people is stressful for me and we all know how stress can bring out our POTS symptoms. I am constantly asking them a question, hearing the answer, commenting on it, and 5 minutes later asking again and feeling like a fool! Glad to not be alone! Amy