Possible POTS treated as mental health/Fear of passing out/ Service dog!

[strangelongtrip]

Hey everyone, I've had symptoms of some sort of dysautonomia since I was 15 after I had a serious traumatic injury but because of my past anxiety it's always been treated as a mental health condition. I sought help for dizziness back in 2014 when I was on an SNRI Effexor. Effexor has messed me up so badly in so many ways. I believe my primary care doctor put me on clonodine at this time because I had the bottle left over from that time but I had only taken one or two pills and had a bad reaction. I've been diagnosed with panic disorder, generalized anxiety disorder, bipolar II, depressive disorder and post traumatic stress disorder. I definitely have PTSD, but I've greatly improved all symptoms in the past year after extensive CBT  therapy. Bipolar II made sense because I'd have these adrenaline like surges and wouldn't sleep for days, but I never acted manically, never did any risky behavior or behaved differently.  I can be loose with my wallet when I don't feel good, but never overdraft and I keep within a budget I don't go over. 

Because of my improvement, and finally being off of antidepressants for the first time in 6 years (every class short of MAOIs), I actually started taking the symptoms I've been experiencing as something possibly not mental health related.  Constant dizziness, fatigue, irritability when standing that goes away when I lay down, high heart rate (I've been tracking it, it's above 125 bpm usually after standing even if I'm not moving around. My resting is around 89 bpm. My blood pressure is high), feeling like I'm going to pass out very frequently, short term memory loss, brain fog, overactive digestive issues, over frequent urination, increases in symptoms in extreme heat and cold. I almost passed out or did for a brief second while driving during this heat wave this past week, and I finally am seeing a cardiologist. I went to my primary care and he said it was autonomic nervous system related specifically because of my heart and breathing not making sense when he was listening, but needed a specialist to look at me. I feel like it's hyper-POTS but I'm no expert. 

I'm really hoping the cardiologist I see tomorrow will have some answers and some solutions. I'm really worried that I'm actually going to pass out at some point, especially if I have to walk long distances. I walk dogs and I know my threshold is about 30 minutes, which is fortunate because that's how long my longest visit is! I sometimes have to take breaks when walking and sit and the dogs don't judge me or get upset with me. It's also my own business and my clients are all super understanding. We're possibly going to Disney World in November/December and I've been in a wheelchair there before for the debilitating back pain from my injury and I'd like to not have to do it again (I hated the attention of being a 15/16 year old in a wheelchair) but understand if I do to stay safe. I also have pretty bad joint pain and my joints all "pop" especially after walking long distances or swimming, and my friend told me to get checked for EDS, but I don't really know where to start for that or who my insurance would cover. I've had all sorts of joint injuries and sprained ankles and wrists multiple times in things that were not all that bad. 

Fortunately and unfortunately, I qualify as disabled from my PTSD for a few reasons as well as medication not helping, and I have started training a service dog last November. She was our pet, but she had been temperament tested to be a working dog and had great results. She has quite a few tasks down that help with both the dizzy spells and the PTSD. What I thought was a panic attack, my heart rate being so high, has translated into a task for her. She alerts me when my heart rate is above 120 bpm (when I started noticing feeling panicky or sick, before I did any research on POTS) by nudging me, then if I'm dissociated/ feeling like I'm going to pass out or from an anxiety trigger, she leads me to a safe place to sit down and does deep pressure therapy until I'm feeling better. It's been slow going but she did this for the first time in public last week, and I'm so lucky to have her. She can even be annoying when I feel really dizzy: she will stop in her tracks and sit and look at me when I'm really bad and as soon as she does DPT and my heart rate is back down we go about our merry way. I do feel a little better about that, and look forward to when she's fully trained and I feel confident her Public Access skills are down. I don't know if she'll be ready by the time we go to Florida, but she is almost there.  I attached a picture of her for those who love dogs!

Thank you for reading!
 

[Pistol]

Hello  @strangelongtrip - and welcome to this forum! First of all I would like to tell you that I am very sorry about all you have to go through. I am not very knowledgeable about mental health issues but I do see some of you symptoms being like dysautonomia symptoms. I also wanted to let you know that I have a friend who is a veteran with PTSD who just 3 months ago got a service dog and he is so much better since he has it. And on top of that - his is not half as cute as yours! Be well - and I hope the cardiologist will be helpful in your treatment! 

[StayAtHomeMom]

I wish you luck with your cardiologist. At the very least request a Tilt Table Test. Your symptoms sound right at home here. 

By the way your dog is beyond adorable and having a service dog sounds amazing for people that have POTS. Especially single people. Someone to care for that takes care of you back with no judgement. Never thought that a service dog could be so helpful for some conditions. 

[strangelongtrip]

@Pistol thank you so much! She’s helped me tremendously. I’m glad to hear he’s gotten one! The VA has been so slow on adopting the policies towards them. So many people not being helped. 

@StayAtHomeMom thank you! I’ll be sure to request it. My mom is driving me just in case I get sick too. Thank you! Ahhh haha service dogs are definitely an icebreaker too. I went from avoiding conversation and not even leaving my house to talking to at least three people every time we go out. At first it didn’t help with my anxiety but now I’m much better because I just talk about my dog and how she’s amazing haha. I’ve met so many kind people and I love educating people on what service dogs can do. 

[strangelongtrip]

I panicked and forgot to ask for a TTT.  I oneself don’t think they do them at this doctor though. I have a lot of trauma from medical professionals from that back pain problems  and other things and kind of...can’t advocate for myself.  I started shaking and had a panic attack when we left. I had to like lean on the checkout desk because I felt so sick. They’re going to put a heart monitor on me and we are running a myriad of tests and if nothing comes back I’m going to ask her for it. I don’t have orthostatic hypertension though? She said nothing about tachycardia. Maybe I’ll ask one of the nurses they were much nicer to me. Ughhh. 

[Pistol]

@strangelongtrip - don't worry, you can call the office and ask for a TTT, they can still order it for you. As long as they are running tests means they are taking you and your symptoms serious. You do not have to know everything before going to the doctor - it is THEIR job to check things for YOU!. 

[StayAtHomeMom]

Deep breath and everything will be OK. It sounds like the doc is at least taking you seriously. While you have the heart monitor on, try to do things. That way your testing shows what happens when you do things.

I have some of my doctors that have a online portal so that I can communicate with them through that.  Maybe with your anxiety issues you could try that. Assuming they have one. 

I hope your testing is informative. One way or the other, having more data will always help. 

[Guest ANCY]

I'm sorry to hear all that you have had to face and all while you are young. I don't have a lot of knowledge on the mental health issues or the PTSD but am owner training my service dog. She alerts to my presyncope before I know I'm going to pass out which gives me time to get to a safe position. She has been the biggest help for me in the shower, have not had an injury while showering in over 2 years now and that is 100% credit to her. 

Stayathomemom's idea of using a patient portal is a great one! For many reasons, one being that the Dr isn't given 3rd hand what you are calling about. Also can help if you feel more comfortable communicating that way. 

I pass out A LOT, a good day, maybe only once or twice but a bad day is more like 20+. Passing out is kind of old hat to me now but I do remember how scary it was when I first started passing out, especially coupled with all the tests. I hope that for you it doesn't progress to anything more, does sound like you are doing what you can to stay active but also safe which is great! It's impressive that despite what you are going through you are still walking dogs. 

Your dog is such a cutie! I can see why people are interested in her. Good luck with all the training, we are still working on some public access training with mine. She is capable of helping me more at home though as I never go out anywhere by myself. She absolutely loves to work and doubles as our farm dog, rounding up the goats, you don't mess with her goats lol! Because she is so keen to do tasks it's been pretty easy going with training.

[strangelongtrip]

20 hours ago, StayAtHomeMom said:

 

I have some of my doctors that have a online portal so that I can communicate with them through that.  Maybe with your anxiety issues you could try that. Assuming they have one. 

I hope your testing is informative. One way or the other, having more data will always help. 

Thank you so much, I'll do the online portal that's so much easier.  And she definitely wants to help me out, and is doing all she can. The whole team was very kind.

 

@ANCY I'm so glad your service dog helps so much! She's gorgeous. I love Danes, they're incredible dogs. Yeah I'm very lucky I'm still able to do the dog walking, fortunately I can spread the walks out so I get a break in between too. 

Ahh that's so cool she helps on the farm too! Thank you! We're really solidifying PA and working on generalizing tasks, which she's just started to pick up this month. She's so in tune with when I feel like I'm going to pass out, I think she senses my heart rate change but she will refuse to move if I'm bad until we do deep pressure therapy. We just really need to work on settling lol she's a go go go kind of dog. She settles at home fine but in public she's like okay can we keep exploring haha. She's 3 but she can sometimes be like a puppy!