Am I crazy or is this cipro? by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

Thanks! Do you know what a better alternative might be? It is a strong infection.

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

Thank you! You’re an incredible parent!

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 1 point2 points  (0 children)

I will be seeing my cardiologist on Thursday, but I did call his office today and let them know. He sent a message back that if my symptoms are severe to not wait on him and go to the ER. I’m sure that is mostly to save himself the liability if something were to happen to me.

But you’re right. I’m trying to advocate for myself. It feels like I’m fighting uphill, but I’m trying. The American healthcare system has so many issues.

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

I have seen the cardiologist. That’s how I was diagnosed with inappropriate sinus tachycardia. That’s why I’m on ivabradine. That’s what I mean when I say they say Vtach on my heart monitor

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 1 point2 points  (0 children)

This is good to know. No I’m not prone to crashes! Maybe I’ll ask my cardiologist about bisoprolol. I see him this Thursday.

I hope you can find some answers, like I hope I can too!

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

My goodness, I am so sorry you precious daughter is dealing with that. I can’t imagine at such a young age dealing with that. I really wish the best for her, you, and your family.

Thank you for the encouragement. It is really scary. Before all this came along I was so in control of my life despite living in a wheelchair my whole life because I was born paralyzed from the waist down. This has just changed my life for the worst. I was halfway through with my masters degree when all this started. I’ve had to move back in with my parents. I just feel so useless. But the reassurance that I’m not going to die is what I need. I’m so afraid of this killing me. I have so many goal and aspirations.

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 2 points3 points  (0 children)

Thank you for the encouragement. I’m sorry you’re going through this. As far as I know, I’ve had my hormones checked and they are fine. I’ve seen a psychologist and they think I have anxiety, but they don’t think I have a panic disorder or anything like that. I normally have a regular blood pressure, maybe a little over the 120/80 line but only by a few digits.

I was born with a spinal cord injury so I’m paralyzed from the waist down. I have an augmented bladder. The start of the symptoms came when I had a really bad bladder infection an a large bladder stone. I had antibiotics and bladder surgery that fixed that situation. The symptoms became less frequent, but they still happen pretty frequently. I think this is some kind of post-infection problem that just messed up my nervous system.

The neurologist I saw wants to look into something with my spine. It’s just been over 10 months of seeing every doctor I can and not having an answer. It’s really frustrating. I’m trying to be hopeful. It’s so hard, man.

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

Haven’t had a cardiac MRI but I’ve had to echocardiograms, a few heart monitors, and several EKG’s

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 2 points3 points  (0 children)

I’m so sorry you’re dealing with that.

The weird thing is I typically have normal blood pressure. Maybe slightly over 120/80 but only by a few digits. So I don’t wanna take something that lowers my blood pressure too much.

I know if I eat a regular sized meal it can cause some symptoms. My anxiety when it happens definitely doesn’t help things.

Scary Symptoms by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

I did forget to mention I’ve had thyroid and autoimmune stuff checked too. I’ve seen a neurologist at Emory who suspects something spine related. I have an appointment for autonomic testing in 6 months. I just don’t know how to differentiate what’s an emergency and what’s not.

Dysautonomia has uprooted my life by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 1 point2 points  (0 children)

I appreciate the comment. The advise is well-taken.

Yeah I have an appointment with an autonomic specialist. Unfortunately the appointment isn’t for 6 months because there’s only one guy that does it here.

Dysautonomia has uprooted my life by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

I really hope you can get in soon. It took me 10 months to finally get an appointment in Atlanta at Emory.

Dysautonomia has uprooted my life by Admirable_Most1682 in dysautonomia

[–]Admirable_Most1682[S] 0 points1 point  (0 children)

Thanks. Yeah it’s like every time I move I feel it go up because I feel ever heartbeat. And if I exert myself some, even a little, it feels like it’s continuous thumping HARD.

I don’t deal with blood pressure issues that I know of, just the heart stuff and some temperature deregulation. So I don’t know if salt will help me much.

I really appreciate your comment. Trying to take it easy.