New Here, Newly Diagnosed

[Faintinggoat]

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

[Darlene72]

Hello Fainting Goat,

I'm new here as well. I know how frustrating it is just wanting that diagnosis and to be listened to and treated fairly by doctors rather than just being a "patient" or a "drug seeker". I can relate to the fainting problem, I actually fell out behind the wheel of my car and hit a telephone poll. I was in the hospital for 3 days, I was dehydrated, my bp was low (weird considering I am on bp meds), my thyroid levels were through the roof, they sent me a psychiatrist because I had ativan in my system (tachycardia) but never said this could have contributed. I am learning on this site so, hang in there and keep reaching out. You will get the support you need. Hope you feel better.

[KareBear]

Welcome both of you, FaintingGoat and Darlene72, to the forum. I am fairly new also. Getting that diagnosis is bittersweet. It's nice to have a diagnosis finally but at the same time you realize that there is no magic pill or cure for this and that we all have a long road ahead of ourselves. It's nice to know we aren't on this journey alone and we have each other here to lean on and support each other. If either one of you, or anyone on this forum, ever wants someone to talk to well I am here. It's an open invitation. I'm always home so messages are welcome anytime. Hang in there and just take things one day at a time!

[corina]

Hi Fainting Goat, welcome to the forums, hope you will find the info and answers you need! And friendships!!!

[kayjay]

Hello fainting goat. Cute name. My sil has pet goats. They are quite funny little guys.

I also was told to stay "hyper hydrated" and increase my salt. I realy struggled with it and finally asked for more specific guideline. I'm usually thirsty and can easily drink too much plain water. I don't know if you are the same, but I finally realized that several days in a row of unchecked water drinking will send me to the hospital.

Now I keep track of my fluids and and feel better.

It's nice to have new members and I hope you improve soon.

[looneymom]

Just wanted to say hi and welcome. I am a mom of 13 year old son that has POTS. He has low blood pressure but has never fainted on me yet. He takes several grams of salt every day and has to watch his fluid intake also. Hope you find answers you need.

Rachel

[Faintinggoat]

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

[Katybug]

Welcome to our community. Love the screen name.

[KareBear]

Fainting goat, I dont know how long they want you to try the increased fluids and salt before you got back to the doc again but if it has impacted your life for so long and isn't getting much better maybe you can call and make an appointment to see your doc sooner. There are meds they can try that help many POTS patients and I dont blame you for wanting to try something and soon. I know the feeling, you feel desperate to try something, anything, that may help. I hope things do get better for you!

[Faintinggoat]

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...

[kayjay]

I'm sorry that you are feeling discouraged. Many of us sadly understand. I absolutely would follow-up. Perhaps you could see a different doctor?

My current Cardiologist and General Internist are accessible to me, and willing to treat my symptoms. They sent me to Mayo Rochester to confirm the diagnosis and to ensure that nothing was being missed. I left with a comprehensive treatment plan.

Treatment HAS helped me. I am my general doctor's only POTS patient but he has been amazing! He cares about the Quality of my life.

I hope you persue good medical care. It's very hard to advocate for yourself when you don't feel good.

[KareBear]

Fainting goat, I have learned that it doesn't matter how great you feel your doctor is if they dont have equally great staff. I have had some very rude nurses and receptionists that made it impossible to get the care needed because they are the front line. They are who we have to deal with most and count on them to relay our info to our doc and vice versa. If you love that doc I would make an appointment to see him/her and ask your questions directly and also mention the problem with the staff and how you were treated. If you dont have the feeling this doc is the best for you then I would possibly go ahead and find a new one. You shouldn't have to put up with this. I have switched docs because of staff before and was happy I did. You dont need the extra stress right now.

[Guest Hanice]

Thats pretty awful. I have dealt with that sash so many times. The last one I went to, insinuated that I was trying to manipulate the doctor into doing non "protocol" things. Its pretty ridiculous :-(

[Faintinggoat]

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.

[Katybug]

I have noticed that really good docs don't make you ask this question. They tell you when they want to see you back...1 months, 3 months, 2 weeks. And they expect you to schedule an appointment before you leave. They also tell you to call if there are problems before then and they return those calls. I deal with well respected docs in each of their specialties and they don't have someone else call me back. They also change the amount of follow up time based on what is going on with my symptoms and treatment at that time. It's been a long haul to find a good medical team but it has been well worth the trial and error. I now know what I will and won't put up with. If I don't receive appropriate care, I move on to someone else.