Faintinggoat

Thanks for the response. I hope that it helps me, or that we find something that does help soon. Will keep updated.

Hey Sarah thanks! I have no idea if its helping or not. I feel kinda weird, but its not anything different from what I have felt with the POTS, so I'm not sure if its the meds or the POTS making me feel weird. Fainting Goat

I'm sure there has been a post on this before, but My doctor prescribed Coreg for me today, to help with the Tachycardia. Has anyone else taken coreg before, or is anyone else on it now? How did it work for you? My BP isn't bad, but she still warned me that it could bring my BP down too much. Fainting Goat

Yup, I get that way too. When you eat, it takes blood to digest, which requires your heart to pump blood there. The larger the meals, the more blood it takes to digest.

I also live in PA, and it has been quite dreary here! I don't know if weather impacts POTS or not. Mine has been consistently bad since I started having symptoms about 15 months ago, so I personally have not really noticed a huge difference when I am on my period, however, I have heard frequently that hormone levels can impact POTS -- that seems to be supported by the fact that more women than men have POTS. So it could quite possibly be related to your period. Have you noticed a increase in your symptoms previously around the time you were suppose to start your period? Hope you feel better soon!

Welcome Krys! I hope that you can find support from people on here. I think a lot of people who have POTS/OH, etc. tend to get at least one doctor who doesn't understand what's going on and automatically jumps to the conclusion that it must just be psychosomatic, anxiety, etc. I agree that finding a good Dysautnomia doctor could be pretty helpful for you! Best, Fainting Goat

Hello Kham, These points have already been suggested in comments, however, I get really low pressure in the morning as well. Generally when I wake up I go through that whole routine of slowly moving from laying to sitting, and sitting to standing. I generally start the morning with Gatorade, (both for the fluid and for the sodium). I am also on sodium tabs that I take in the morning to raise my BP. I was also told to wear thigh high compression stockings all the time, an abdominal binder, and raise the head of my bed 6 inches. The only thing annoying about compression stockings is that they can be quite pricey (I get Juzo) and that they need to be washed daily to help maintain the compression longer. Though I still have symptoms, these things have helped to decrease some of the symptoms and raise my BP. Hope this helps! Fainting Goat

Sue - For me my brain get's slow, but so does my body. I don't really focus on anything in particular, I'm just gone. KareBear - That's pretty somewhat similar, except I don't really do things. I pop in and out of these episodes, sorta, where I'm kind of aware for a few seconds or minutes, and then pop back into them. I don't talk or do anything. Margie - that makes sense to me. My doctors never really said it was all part of the pre-syncope but it makes sense to me that it would be. My brain is usually completely gone. And while I don't really do anything, my body does act a little weird as well (e.g., I've been told, I hardly blink, I hold my breath, etc.) Thank you all for your responses, Fainting Goat

So has anyone else experienced this? I'm not sure if its brain fog or what. But before I pass out, I get really spacey. I don't realize this is going on, in fact, I don't really know what is going on at all. I pop in and out of these spacey episodes. Before I was diagnosed with the POTS they thought that it might be Absence Seizures because of this. Does anyone else experience this? I also stay pretty spacey for a while after I regain consciousness, but that's pretty common after fainting. Fainting Goat

Wow that is really lucky Sarah! When I was going there I did not really notice a change in my migraines sadly. But I'm not sure if I would have had I been able to keep going. But I also agree that it could just be because the Migraines might not be a primary issue. Now that I've been diagnosed, I'm fairly certain that mine are part of the pots, or in some way related to it. P.S not sure why I signed my post Sea Llama, lol. I use that as an internet handle in another place. Silly Brain Fog! Take Care, Fainting Goat

welcome to the forums! I'm also relatively new to posting on DINET and relatively newly diagnosed with POTS (though struggled with symptoms for over a year). I hope that you find lots of help and support on here! And I hope that your appointment with the specialist is a good, productive appointment best wishes -fainting goat

I have also seen a chiropractor, mostly for migraines as well, and had no relief other than my back didn't hurt anymore. I stopped seeing him, however, because my insurance benefits lapsed for them for the year. If it starts to help when you have your chiro adjust the areas mentioned in the article, please let me know! I'd be interested in knowing! -Sea Llama

You are in a place where a lot of people can really relate to how you are feeling right now. I'm glad that you felt that you could reach out to people for support and encouragement on here. We all know that its hard to keep going when it seems so hopeless, but as the other commenters have said, just keep going. Its an incredibly long process for all of us, and I know I (and probably most people on here) have felt like they were going no where. You are strong just for having survived with these problems for as long as you have! If you ever want to talk, and get more encouragement, please feel free to shoot me a message. Stay strong! - Fainting Goat

You are definitely not alone, friend. I also get this way, particularly before and after I faint.

KayJay: Thanks for your response. My PCP has been out of town on conference all week, however, before she left I had already been having issues getting anything from my specialists other than here try this and go away. But when we left things she had basically told me that she was going to work at taking things in her own hands, and figuring out what she can do for me. I live almost 5 hours away from my specialist, so that would also be more economical for me. KareBare: I felt good about my doctor, but I've actually only seen and talked to him once since I was referred to him way back in April or May. So, like everyone else, I've been dealing more with the support staff than anyone else. Actually the cardiologist who ran my tilt table is the one who diagnosed me, not even my POTS specialist. I'm grateful that we got the diagnosis from them, but I am hoping that I can just continue my care here with the doctors who have been fighting with and for me this entire time. Hanice: I have certainly had similar experiences to that. My former local cardiologist ran some tests and told me that my heart rate was elevated during these events (clue number one) but there were no signs of ailment and that I should follow up with my psychologists and possibly a psychiatrist.

Hi Kara, The only things that have been suggested to me regarding sleep and wake are to sleep with the head of your bed raised 6 inches and to wake up an hour earlier than I normally would. Though that's not something a lot of people would like to do. During that hour I am suppose to slowly change positions and stay in that position for a bit until I finally get to my feet.This I'm guessing isn't a huge amount of help, but I thought I'd just through it out there just in case. Fainting Goat

Hi Racer, I have a pretty bad ER near me as well, so I can understand to some extent getting bad care. But what they did to you is just uncalled for. I live a few hours from Cleveland, and my insurance refused to pay for it at first. However, apparently there are some appeal things in place at least at my insurance to appeal to them to pay for care out of network, at places like Cleveland. So when I was referred there my doctors had to submit my charts as well as some other things to the insurance company to state that it was Medical Necessary for me to go elsewhere. I don't know if your insurance does anything like this, but it might be worth giving them a call if you haven't already. Hope this helped, feel better! Fainting Goat

here is my current update... A week ago today, I called my POTS specialist, because when they called me with the results, no one had told me what I should do if their conservative treatment doesn't work, and when I should call for a follow up... When she called me this is how the conversation started: I'm calling you with a response from the doctor. "This is all from the report that was already sent to you, so I am just going to read from it..." She explained to me that if the treatment doesn't work that there were some medicine that the doctor mentioned. At that point I said, okay thanks. I have a question. I asked her how long I should wait to follow up with him if I don't seem to be getting better. Before I could finish the question she responds to me by saying "listen, you didn't get this over night and it surely isn't going to go away over night. It takes time"... I said, okay, thank you. And I understand that but can I please finish what I was going to say. So she lets me talk, and I asked me how long I should wait to see if this will work and that I have been doing all of this for over 2 months. I was told when I was positive for POTS that I should be doing these things. Her response.. "It takes time".... at that point I was so made with the snippiness and the lack of any kind of answer that I said K thanks bye and hung up. I'm so upset right now about all of this...

I just had a massive number of blood tests done, Paraneoplastic was one of them. Thanks for asking this question, the responses have been very helpful. Natops: I am familiar with what the test is for, I am just a bit confused because a lot of people who have this test and have finally been diagnosed have had symptoms for a while. In my case I have had major symptoms for about 14 months. It confuses me that a cancer could be missed for such a long period of time.