Faintinggoat

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.

23

Thank you all for the warm welcomes.

Darlene72: Gosh, fainting behind the wheel must have really scary. I was constantly going to the ER basically every other day, was admitted for 2 days, discharged and the day after I was discharged, I was admitted again. After the second time I was anonymously reported to the DMV and my license was suspended. The suspension resets to 6 months ever single time I faint. I was super made about this at first, but after realizing how dangerous my condition was, and hearing about situations like yours, I guess it was probably a great thing that my license was suspended. IDK what would have happened to me, or anyone else had I chosen to drive and fainted behind the wheel. I'm so happy to hear that you aren't permanently injured from that accident.

KareBear: You have it dead on. What you just said is an eloquent explanation of what I was trying to say. It is very bittersweet. Most people have been struggling with the symptoms for ages, so finally knowing what is wrong is this huge relief. Then year learn about the disorder and learn that it isn't something where you just take a pill for a week and then you are okay.Thanks for the welcome!

Corina: Thanks for the welcome, I hope to make some great friends and support from this site.

KayJay: Thanks for the advice. I was told that I should drink OVER 2.5 liters of water and have 3-5g of sodium a day. So they were thankfully pretty specific about what they wanted. I have an app on my phone that allows me to track when I drink and what I drink, but it also reminds me to drink something every 90 minutes. This helps, and I think that increasing and tracking has certainly helped a lot (going from 7 syncopal episodes a week to 4) but am just frustrated because this is something I have been doing for probably 2 months. Joking about things that are bothering me really helps me to cope with them, hence the nickname Fainting Goat. I have been using it as my internet handle for a while. It started one day when my friend sent me a link for a sign on amazon that said "Caution fainting goat x-ing" and it has just stuck since.

Looneymom: Thanks for the welcome! I can only imagine what it is like to be the caregiver of someone with this disorder. Its a struggle having it, but I can only imagine how hard it is to see someone you love and care about struggle with it. Its great that he hasn't fainted yet, that can be pretty scary for anyone, especially for a 13 year old. Hope that things go well for him!

Fainting Goat

This is going to be a somewhat long post, but I just joined the forums and wanted to introduce myself. I have recently been diagnosed with POTS and Hyperkinetic Circulation, though the latter wasn't really explained to me. My POTS symptoms got very noticeable about 14 months ago when I started getting dizziness, and fainting regularly. Up until about 2 months ago, I was fainting about 7 times a week. When I had my tilt table, I was officially diagnosed with POTS and was told that until I got further testing that I should increase my fluid and sodium intake. I had nuclear testing about a month ago, and just got the results back. When I got the results back I was told that I had severe hypovolemia and hyperkenetic circulation, and that that I should do exactly the same thing, drink more water and increase sodium to increase blood and plasma volume. I was told that after a while of seeing this course of action through that they would readdress things, and possible change the course of action, if need be. I'm a bit frustrated because I have already been doing all of this for two months and just want to get better. I understand that doctors want to make sure that they have the right diagnosis, and right course of action, but I am getting frustrated that they are playing it so conservatively when its been impacting my life quite dramatically for over a year. Don't get me wrong at all, I am very happy that I finally know what is wrong with me, and that I finally have a doctor who doesn't just think that I'm crazy, I'm just frustrated and needed to get my thoughts out.

I am excited to have joined the forums, and am looking forward to network with others who understand both what I have and will go through. I appreciate everyone taking the time to read this post.

Best Regards,

Fainting Goat