Nymph

Hi Paul, I have a similar gap - right around 30 bpm difference lying to standing, although my hr runs a bit higher, bp lower. My symptoms are also not directly related to my numbers at any given time, however I consider my POTS on the mild side over all. You mentioned that you have had symptoms for a long time, but sometimes are symptom-free. I have the same situation. What are your symptoms? Best, Nicole

Here is an idea of how to do it without heat: http://www.pburch.net/dyeing/dyeblog/C2070637368/E20100208072410/index.html

Here's some cute ideas: http://blog.sockdreams.com/2013/05/31/diy-dyeing-stockings-to-match/

Here is someone who dyes regular stockings with good results: http://www.thelingerieaddict.com/2012/08/how-to-hand-dye-stockings.html

Hi all, I was wondering if anyone has tried to dye compression stockings. I just bought some Allegro stockings because they are much cheaper and I like them. However, they only come in black and nude. I would like to dye a pair grey. Please share your experiences!

Shathaway, I just want to say that I understand. I have similar symptoms and am also from a medical family so I get how they brush off our "minimal" problems and make us feel like we are hypochondriacs. My advice is ato keep looking, keep trying new doctors until you find one who takes you seriously. I have had major depression in the past and so everyone would always chalk up my other health issues to depression - even though I could tell the difference! Nobody knows your body like you do. POTS is certainly not an unlikely hypothesis and would be reasonable to anyone who was knowledgable (unfortunately the minority). There are other conditions that are important to rule out. As far as advice, I would get a auto BP cuff and do a standing (poor man's) tilt table on yourself on several different occasions. This is what I did and having hard numbers plus symptoms made all the difference in getting my doctor's attention. One page of such data will sometimes do more than a five-page health history. Best of luck, Nicole

I live at 3000 ft (1000 m) elevation and have not noticed a difference at this altitude or when I travel to the lowlands. But then it is hard for me to tell as my symptoms are very variable as it is. However, my first real POTS episode occured at 7000 ft and was a doozy. I did not used to be sensitive to altitude but have been in recent years. I am not sure at what altitude it starts to affect me but I know that at 7000 ft I am not feeling well. Flying does not seem to pose a problem. Apparently the cabin pressure makes it okay for me, although I have to hydrate and use eye drops and nasal saline continually. (I have Sjogren's.)

Thanks, Sarah. Yes, I will look into their outpatient program. I think that there are also some docs on your list around Raleigh. That might also be a possibility. It's about the same distance.

I just wanted to add to this as I have been wearing compression since late September, both 15-20 and 20-30. They are a huge help. However, now the weather is starting to warm up and it is so humid! I have been panicking because my higher strength tights are all opaque and hot! (They are Solidea - I found a sale! Very nice for winter.) For the summer heat I have ordered these puppies: http://www.discountsurgical.com/absolute-support/a716.thigh-hi-compression-leggings-no-foot-20-30mmhg.21645.html Those are the coolest option I could find that still cover the most leg (and allow me to wear sandals!). I also ordered some sheer open-toe thigh-highs and one pair of O/T sheer waist high in 30-40 for really bad days. The sheers I have now are much cooler than the opaques for hot weather. They should all be here by next week so I will let you all know how they are. Gah - the only thing more expensive than a compression wardrobe is a compression wardrobe for two seasons!

Hi Sunshinegirl, Thanks for the recommendation. I am in Western NC so Norfolk is a lot further away than Nashville. That's great that the beta-blocker is working for you. I wonder if it would work for me. My HR does not get super-high. It tops out around 120 standing. I think I really need to find out more about what's causing this for me.

Interesting. Thanks for looking for that. It doesn't indicate vasoconstriction to me. I will ask him for more info before I decide whether to try it.

Thank you, Katie. No, I don't have thyroid problems so I thought that was weird. Apparently it raises BP, but I'm not sure what mechanism. If it's a vasoconstrictor I might give it a try. I definitely have a blood pooling problem that I can see and feel in my feet. I will give this guy another try and see what happens. After that I may seek a second opinion. I appreciate your input. Nicole

Hi all, I first learned about POTS in September. In November I was diagnosed by a cardiologist on poor man's TT data alone. I did have an echo first to rule out heart problems. I am not on any meds at this time, although the cardiologist told me he was willing to try fludrocortisone and T3. (Is anyone on T3 for this? What does it do?) At this point I am just on salt, H2O and compression. I think I would benefit from meds. I work 1/2 time and come home exhausted. On bad days I am on the couch until late afternoon. I am a mild case but it still takes a chunk out of my life. I would have liked to be in the Vanderbilt study as I have Sjogren's, but have hyper-flexibility, too. So I don't know the cause for sure. My pulse goes up 30 bpm, and it goes up a bit later, at around 10 minutes of standing. They probably want more clear-cut cases. However, I am very symptomatic at that point with numb lips, blurred vision and lead legs. I guess my main question at this point is if this is caused by a neuropathy due to Sjogren's or not as that would affect my treatment decisions. I am really not sure where to turn for those kind of answers. Should I go to the Vanderbilt clinic? I like this cardiologist but I don't feel like he's all that knowledgable as to causes/treatments. I live in NC. Let me know what you think. Nicole

What a great post and so helpful! I am not on any medication yet, just salt, H2O and compression. My case is mild. I also have some other health issues that I have to consider when making choices for my body. But not freaking out and obsessing - making everything worse - is such good advice. I had a minor freak-out this week related to my autoimmune issues, and it made me feel so much worse! I need to learn not to do that. It is so helpful to connect with people who have already worked through these things! Thanks, Lemonade!

Hi Caoruz, I just wanted to say that I understand. My parents are actually understanding and great. It's school and work that feel like all or nothing for me. There is just not the flexibility. If I want to establish my career, I have to go full on, or so it seems. There are very hard decisions to make and I go back and forth all the time. Ultimately, I will not be able to do anything if my body says no. That's just a fact. I will have to come to a compromise position with my limitations. It sounds like you have already made some progress in that area. Digital art is a fantastic skill to have. Think about your future and what will work for you in the long term. (I should listen to my own advice!) Best, Nicole

just found this which lists hypoxia as a sign of POTS http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600095/ And this quote from Johns Hopkins on oximetry "Certain factors or conditions may interfere with the results of the test. These include, but are not limited to, the following: Decreased blood flow to the peripheral vessels"

That's very interesting. I wonder what it means, too. I am hoping that it is part of POTS. I am really hoping that it is NOT autoimmune lung issues in my case. If anyone has seen literature about O2 levels in POTS, I would really love it if you passed it along!

Thanks for this post. My O2 levels have read low that last couple of times I was at the doctor. I have Sjogren's and antibodies for RA, so now I am wondering if I ahve an autoimmune lung problem instead of or in addition to POTS. I am not sure what to do but I feel that I need to find the right doc for this. I'm glad you found your answers!

Thanks! I am going to call them today and ask. I hope it is not something with my lungs!

Hi! The last few times I've been to the doctor (August, September, and now) My oxygen has read 89-90% on the oximeter. My nurse mentioned it, but I don't think she said anything to the Dr and I forgot to ask. I am now a bit worried that I may have a lung problem. I called my sister who's an NP and she had me do a capillary refill test on my fingernail. Apparently my circulation is pretty sluggish and that is why my O2 reads low, she thinks. Does anyone have low O2 readings and, if so, do you have an explanation for them? I'm going to call my Dr today. Thanks, Nicole

Hi Claired, It is possible to have dry eyes with reactive watering. From what I understand, it can mean that your tear quality is reduced and they evaporate more quickly. There are several tests an opthalmologist can do to see what's going on with your eyes. Some of them will do the newer blood tests for Sjs, too. Nosebleeds probably mean a dry nose unless you've always been prone to them. My nose/sinuses are my dryest part. Headaches in your teeth can come from your sinuses or a lot of other things, such as swollen salivary glands. It's always hard to tell with head pain because it can come from a different part of the head. Any of the other issues could be from Sjs or from dysautonomia. My advice would be to get your eyes checked for what is causing the burning and watering and go from there. If you ever get joint pain, dry mouth, or swollen salivary glands, then you should go to a rheumatologist familiar with Sjs to be checked out. Take care!

Mine started in 2010-11, although may have had some symptoms before that. Mine has gotten better and worse over time. This last year it has been at its worst yet, though, so I think it's getting worse overall, but it's hard to tell. It also varies a lot over the month.

Thanks for posting this article. It looks great! I can predict my POTS symptoms based on my cycle. I have got to study the article more to find out if it's talking about the same thing I experience. However, I think we had a poll here about this at one point, and people said that before, during and after their period was the worst. That is what I experience. The other ten days of my cycle leading up to ovulation I feel much better. I will have to go back and look at the hormones again. I would like to understand this better!

If your doctor thinks that your hormones need even-ing out... Why does she think they are uneven in the first place? For example, some things, such as being underweight or very athletic, can change your hormones and stop your period. You are absolutely right to ask questions and weigh the pros and cons. If there is an underlying cause, in my opinion, it is better to treat that as naturally as possible before pasting over your own hormones with synthetic ones. But sometimes it can be helpful for difficult problems. To me, not getting my period would not be a difficult problem! You can also take the wait-and-see approach. BTW, a "period" with birth control is not a real period anyway, because you haven't ovulated. So it's not really fixing anything because the most important part of your cycle is not your period but ovulation, from a biological standpoint. Those are my two cents. I'm sure you'll make a good decision.

Thanks, Katie! Yes, whenever I have a cold I am worse for weeks afterwards. I guess it makes sense.