BeforeTheMorning

I have had my co2 levels tested and they were elevated. I have the problem with hyperventilating (when I had tests done I was hyperventilating without knowing it) and I get shortness of breath. My doctor referred me to a respiratory physiotherapist and she is teaching me breathing exercises to get my breathing technique right and cut down on the hyperventilation. Do you think you could get your doctor to refer you? Lyla

This may be stupid, but I was wondering if it could possibly have anything to do with what you eat for dinner? Could there be anything that you have become allergic to that's triggering symptoms? It might be worth recording what you eat on different days and see if there is any correlation between that and how you feel. Or even how much you eat? I have to eat small amounts and can get really ill if I eat too much for me, and get a flare up of symptoms. I hope you can find a solution soon.

Please! Has anyone found anything that helps with urinary frequency or urgency? I'm having to go so often, I guess because I'm drinking a lot, but if I'm sitting up or standing I can get desperate quite quickly and I wondered if anybody knows anything that will help? (Sorry if this is tmi, I just really need to find something that will help) Thanks.

Hi, Is it possible to have abdominal pooling without knowing it. I mean I know I pool in my legs because they go bright purple! Only I'm having a lot of trouble with feeling a lot more nauseous when I stand and along with that a need to go to the bathroom, and I was wondering if it could be abdominal pooling? Also what are any and every benefits anyone has found from wearing an abdominal binder? Thanks.

I hope your appointment goes/went well!

Best wishes to Tyler! I hope this treatment will really help.

HI, I know how hard it can be to eventually admit that you just can't do something. I'm glad you managed to get your ssd so quickly though. Best Wishes, Lyla

'I defied gravity for 5 minutes straight!'

Hi there, Welcome to the forum! Before I was diagnosed with POTS, I also had two 'not very believing' type cardiologists. I was told that by the most helpful person I saw that I might have inappropriate sinus tachycardia (because these people didn't know enough about POTS) and I was also told I didn't drink enough too! If you think that POTS is a possible diagnosis for you, then maybe you should look into seeing a doctor who specializes in POTS. I don't know what country you're in, but Dinet.org has a physicians list and so does Potsuk.org. I switched to seeing a specialist and it was SO worth it! He is great. It's so just to have someone believe what you say. He ordered me a lot of tests to rule out some other things, and then diagnosed me last year. I hope you find someone to help you soon, Best Wishes, Lyla

Yay for you! That's fantastic! I hope it continues to go really well!

Thanks blue, I've had a look at her blog and it looks great. I will have a look at the post on compression.

Hey, that is exactly what it is like! Almost like you are having to lug your legs around from the hip and they're not really doing the work themselves. The weird thing is that it comes and goes as well. I wonder what could cause it?

Thank you so much iamapumpkin! They look great, and what is so great is that I found them on another site in the sale, and so have bought myself two pairs. I'm really hoping they work well for me. Thanks for sharing. If anyone else knows about any full length compression leggings, I'm looking to get some of those as well, so would be interested in hearing about them. Thanks, Lyla

I had managed to work my way up in small stages to walking a mile a day without any big problems. But since my flare up of symptoms, I'm often finding it a lot harder to walk. My legs feel heavy and as if they don't want to automatically do a walking pattern. Also my hip area hurts or feels uncomfortable and when it's bad I tend to end up walking in a really weird way, generally either with one leg stiff and my foot turned right in, or on the edges of my feet with my toes curled up. Ok, it's weird! I know! Does anyone else have a similar problem, or know of anything that will help?

Hi, Has anyone tried compression leggings, or footless compression tights? And if so do they help as effectively as a normal compression stocking? In the summer I like to go around barefoot, but I really need to try and make myself wear compression to help with my symptoms, and I wondered if these would be an option. Also does anyone know where is a good place to buy them, that isn't too expensive? Thanks, Lyla

I've been wondering about abdominal pooling recently. I get a lot more nauseous when I stand, and I wondered if this could be anything to do with abdominal pooling? Also, weird question, but if you are pooling can you necessarily see your skin going purple? Alicios - I'm sorry I don't know about any medications that could help you, but have you tried anything like shapewear shorts? I know some people use them, and I think they are probably more comfortable than a binder?

Thanks for all the suggestions. Writerlymom, hey I'm sorry you're going through a flare too. I hope that you feel better soon, and can enjoy your vacation. Katybug, wow I don't think I've ever seen the cooling towels before, and ice packs round your waist sounds like a good idea. I've bought a pair of the acupressure wrist bands and hopefully they will help. I had some crazy ideas for decorating them with embroidery so they look less medical! Maybe I'll do that one day when I'm not too tired and go around with the grooviest motion sickness bands ever!!! Best Wishes, Lyla

Hey, My POTS has got a lot worse since the summer started, worse than it's been for quite a while. And I'm going on a vacation, and I really need ideas as to what will help with nausea (particularly motion sickness) and how to cope with the heat. Any ideas/thoughts are greatly appreciated. Thanks, Lyla

@writerlymom Thank you. Hopefully all of us will get better! I wish I could think of some things I could share with you that would help in your crash, but maybe other people with chime in with more helpful info. @Raisin Thanks for sharing that with us. I get a lot worse in the heat, but I've never tried a cooling vest. Maybe it's time to give that a go!

Hey writerlymom, I am so sorry you are going through a rough patch, and I can really relate. Earlier this year, I started to get quite a lot better and I was able to eat better, walk further, and generally keep up more. But then almost a couple of months ago, I suddenly started going way downhill, with worse nausea, dizziness etc. plus the weak legs that seem to just want to ache and buckle underneath you! There are some days I'm doing a little better now, like the nausea isn't as bad as it was and most days the dizziness doesn't come on so fast which is good, but I'm still not back to where I was before. However I have had bad times before and got better from them so I just have to keep hoping I'll get back to an 'up' time soon. I think that the hot weather really doesn't help me symptom-wise and I try to make sure I'm drinking enough and eating enough salt. And try to stay cool as much as possible. When I was feeling worst I had to cut back on the exercise, but I still tried to do something. If you are feeling too bad to do any upright exercise, maybe you should consider something like a recumbent bike or a rowing machine? I found a rowing machine helped me to exercise a bit without getting dizzy, because I was seated with my legs out straight in front, so I didn't really get blood pooling. I know it is really hard to cope when you suddenly get a lot worse and don't know when you'll feel better again, but I really hope that you will feel a lot better very soon. You can do this. Stay strong. Best Wishes, Lyla

I'll be thinking of you tomorrow, hope it goes okay.

Thinking of you, and hoping your appointment goes really well. Best Wishes, Lyla

Anyone else get this, or have any ideas as to what could help with ectopic beats?

Hi, I hope your appointment goes well, and you get a great treatment plan. On long journey's I sometimes find that listening to music helps to pass the time when I'm feeling bad. Best Wishes, Lyla

It sounds like you're doing well, good for you! And here's to a really quick recovery!