BeforeTheMorning

Thinking of you today. I hope that your TTT goes well and it isn't too hard on you. Best Wishes, Lyla

Hi, I'm sorry I don't know anything about celiac disease, but I just wanted to say welcome to the forum! It's nice to meet you, I've had autonomic testing and been told 'probably POTS' too. I hope you'll be able to find some relief from your symptoms soon. Best Wishes, Lyla

Congratulations! Really hoping that you can make it out and have a great day. Sending you as much positive energy as I can possibly spare!!

Hi, Sorry you are going through so much at the moment MedicGirl. I hope you start to feel better soon, and that your treatment goes well. I just wanted to say that the strength and positivity in your posts is really inspiring. Thoughts are with you, Lyla

I'm sorry you are having such a hard time. Sending you a big hug! And I hope that good days will soon be coming your way. Best Wishes, Lyla

Thanks for the replies everyone. I hope we can all find some relief from this. If I find out anything that helps I'll let you know, although sometimes it can be hard to tell what's helping because it comes and goes anyway. I'm so sorry for you guys that are dealing with this constantly. Bebe, that's really interesting that yours tends to start up in the afternoon and evening too. I wonder what causes it? Janet, that's interesting that an antihistamine helps your mother. My tinnitus often gets a lot worse after I've been cleaning a dusty room or something like that. Lyla

Maybe. I've just thought, how long did it take for your HR to increase to 155bpm? Because I think to really classify as POTS you're heart rate is meant to go up 30bpm in the first ten minutes of the test.

I get a buzzing, humming sound in my left ear quite a lot. Interestingly it often starts in the afternoon, gets louder and louder throughout the evening and then stops during the night, only to start again the next afternoon. Does anyone else find this? It's worse than normal at the moment and is buzzing nearly all the time, and I wondered if anyone on here who has tinnitus has found anything that helps? Thanks,

The increase in heart rate does look like POTS, but I think some people say that you have to experience symptoms as well as having the increase in heart rate to get a positive test.(If this isn't right, somebody who knows more than me please correct me ) Did you experience any of your other symptoms during the test, e.g. lightheadedness?

I've definitely experienced this. A lot of the time I don't really get thirsty at all. Sometimes it's okay and I can make myself drink as much as I'm meant to, but a lot of the time I feel like I'm having to force it down my throat because I'm just really not thirsty. I now try to have set times when I will drink a certain amount, to make sure I don't get dehydrated and I'm doing better than I have been previously. I also find it easier if I have a cold drink and then a hot drink to kind of vary it! I hope you find something that helps soon, Lyla

Yes this definitely happens to me, particularly after eating a high carbohydrate meal. BTW northerndarlene, I love the quote in your signature, that is so true! Best Wishes, Lyla

Hi, Hope everything's gone well for you today. The nurse practitioner that I used to see was really helpful and ready to listen, and she would also consult with my doctor.

Hi Krys, Welcome to the forum! I had a problem several months ago with a cardiologist who obviously didn't believe a word I said. So I switched to a new cardiologist who is really great, he orders all the tests that I need and already has a medication in mind for me to try. Maybe you should have a look at the list of doctors who specialize in POTS, on the dinet website? Best Wishes, Lyla

Big Hugs to you, I'm so sorry you're feeling this way right now, it is very hard to have a chronic illness. I often feel this way when friends or family want me to go out with them, and I just can't do it. You just have to keep hoping that good days will come. Best Wishes Lyla

Hi Alison, Welcome to the forum. It's nice to meet you and I hope that you will soon be able to get the care you need. Best Wishes, Lyla

Hi, Welcome to the forum. I'm new here too, and my doctors are fairly certain I have POTS. Sorry to hear your story, but it's nice to meet you, and I think you will find a lot of help and support on the forum. Lyla

Hi, Thanks for the replies everyone. Becia, like you I'm sorry anyone has to go through this, but glad I'm not alone! Chaos, yes for me it definitely isn't an anxiety thing. I generally don't feel anxious at all during these episodes, they're just really unpleasant.

Hi, I was wondering if anyone else gets episodes like these and if so do you know anything that helps with them. I keep getting episodes where I feel short of breath and kind of like my breathing is coming in jerks and gasps, sometimes it feels like the air is being jerked out of me and then I'm gasping for breath, if that makes any sense? At the same time my arms start getting tingly and numb, sometimes I get a sort of unreal sensation, almost as if I'm going to float off into space? (Again I'm not sure if that makes any sense or not, lol!) And I also start to shake uncontrollably. It's like my muscles all tense up and shake. Sometimes it's my whole body and sometimes just part. Also once I start shaking my breathing comes kind of in jerks in time with the shaking, almost like as if you were sobbing really hard. I've had these episodes occasionally in the past, but now they are getting more and more frequent, and if anybody has any ideas of anything that might help, or just have a word of encouragement, I'd love to hear from you. I hope this post makes sense, I'm really awful at describing things, lol! Lyla

Hi, Thanks for the welcome both of you. Kara, I think that maybe my 'main' doctor who is getting my tests, hasn't commited to the diagnoses yet because he has never seen me. His waiting list is quite long, and so he just ordered me lots of tests, I think maybe he will give me a more definite diagnoses when I go to see him at the end of December. He's also planning to try me on a medication and I'm really hoping it will help. Thanks again for the friendly welcome, Lyla

Hi everyone, I just wanted to post an introduction here. I've been lurking around the forums for quite some time now, picking up bits of information and I finally decided that it was time I joined in! I've been dealing with symptoms such as tachycardia, palpitations, dizziness, lightheadedness, fatigue, stomach issues, blood-pooling, etc............. for 3 or 4 years now, and my doctors have now told me that it's very likely that I have Postural Orthostatic Tachycardia Syndrome. I've had an Active Stand Test and Autonomic Function Testing which they said showed a very significant POTS pattern, they just haven't told me it's definitely that yet. I'm really looking forward to getting lots of tips and advice from all of you as I use the forum. This is my first post so please bear with me if I've made any mistakes. Thanks, Lyla