Could this possibly be dysautomia?

[Bb92]

Just wanting an idea on what is going on....

I’m currently 26..

When I was 12/13 I started having issues with my blood pressure. I’d sit up from bed and feel faint. I’d get the same when kneeling down and sitting up. I’d feel a pressure in my head and dizziness as well once I stood up. One time I got up and fainted. I went to a children’s ward and they did a eeg on my brain which showed nothing abnormal. I don’t remember any other testing. That was it. 

I also once had a heat attack (perhaps panic?) in the shower around age 13. I suddenly couldn’t breathe and had to get out..blacking out and felt sick and like I was dying. I had several of these attacks till a few years ago. I think heat isn’t very good. Mostly from hot baths. Haven’t had one on several years. 

I do get an increase in heart rate when I stand up but drs say normal when they check. But they do it quickly.I’ve had no other testing apart from my blood pressure and the thing they put on your finger for pulse. I’ve self tested my pulse and it seems to go up around 20bpm higher but I’ve misplaced my monitor. My ecg showed a slow heart beat but nothing else anyone said. 

My blood pressure is so low they can’t pick it up at times. I have chest pain which sometimes squeezes, skipped heart beats, have issues standing still, bradycardia, tachycardia (for a time I had 130bpm in the mornings),  unusual severe fatigue, headaches, weird “energy rushes”, 

Head pressure sometimes when I stand up, arm pain, numbness in jaw and neck, speech issues, sleeping issues, neck pain, brain fog..lots of things like that. I’ve had blood pressure issues with being low for years. Sometimes it’s normal. I’m unsure if it drops or raises if I stand drs have not told me anything. Seems like sometimes it drops and raises to me..

Been under loads of stress for a long time but had issues with my body since I was 13 regardless. 

Have diagnosed depression, anxiety and stress. But was wondering if this could be pots? Chiari...?

 

I’m seeing a cardiologist for my very low blood pressure and skipped beats..hopefully..have to be approved first. 

[Pistol]

Hi - welcome to the forum! - The symptoms you describe sound like they could be dysautonomia. You definitely need to see that cardiologist. Mention to him that you are concerned about POTS and that you had these symptoms since childhood. If he is any good he will automatically order a Tilt table test ( TTT ) and that should show if you have POTS or orthostatic hypotension. A lot of your symptoms sound like your BP is dropping. In the mean time you should increase salt intake and drink LOTS of water ( or even Gatorade ), that helps most people with your issues. Avoid heat and buy compression stockings - they really help a lot, especially with low BP. You can buy them in a home medical equipment store or online. Also - check your BP and HR whenever you have symptoms and write them down - this will help the cardiologist and you can come prepared. Check your BP/HR after lying down for 1 minute, then after sitting up for 1 minute, then standing after 1 minute, 5 minutes and 10 minutes ( if you can stand that long ). If your HR goes up at least 30 BPM after standing up and stays elevated you most likely have POTS. But if not you still may have it - it will show on the TTT. Most cardiologists will also order and echocardiogram of your heart, an ECG, and blood tests. I hope your appointment gets approved ( I can't see why it would not ). Best of luck - and please keep us posted!!  

[StayAtHomeMom]

I agree with Pistol. Try to get a tilt table. I had a poor man's done 3 different times from 2 different doctors and it came up "fine." They were testing too quickly as well. I have had 2 tilt tables and both showed I had POTS. No fainting but definitely exhausting. Tilt table test is the best way to rule out autonomic dysfunction. Other diseases and disorders that are "more common" can have similar symptoms. So best to rule out everything you can. 

By the way just as a clarification that I personally didn't know. Heart palpitations are not just skipping beats. It is anytime you are aware of your heart rate. Fast, slow, hard, skipping. All of it. I thought it was only skipping until my second cardiologist explained it better. 

[zerohours000]

40 minutes ago, StayAtHomeMom said:

I agree with Pistol. Try to get a tilt table. I had a poor man's done 3 different times from 2 different doctors and it came up "fine." They were testing too quickly as well. I have had 2 tilt tables and both showed I had POTS. No fainting but definitely exhausting. Tilt table test is the best way to rule out autonomic dysfunction. Other diseases and disorders that are "more common" can have similar symptoms. So best to rule out everything you can. 

By the way just as a clarification that I personally didn't know. Heart palpitations are not just skipping beats. It is anytime you are aware of your heart rate. Fast, slow, hard, skipping. All of it. I thought it was only skipping until my second cardiologist explained it better. 

Question: can a TTT actually rule out autonomic dysfunction?  I had one and I was definitely negative for POTS but definitely have neuropathy going on.  What diseases and disorders could have similar symptoms?  Because my Neuro and PCP both said no to Dysautonomia.  But didn’t say anything else.  Thx

[StayAtHomeMom]

40 minutes ago, zerohours000 said:

Question: can a TTT actually rule out autonomic dysfunction?  I had one and I was definitely negative for POTS but definitely have neuropathy going on.  What diseases and disorders could have similar symptoms?  Because my Neuro and PCP both said no to Dysautonomia.  But didn’t say anything else.  Thx

It is the most reliable. But you also have to have a doctor that can interpret the results correctly. 

Autoimmune, lyme's, thyroid, vitamin deficiencies, hormone imbalances, electrolyte imbalances, structural defects, pulmonary hypertension, and I am sure there are more I just can't think of them. 

[zerohours000]

2 hours ago, StayAtHomeMom said:

It is the most reliable. But you also have to have a doctor that can interpret the results correctly. 

Autoimmune, lyme's, thyroid, vitamin deficiencies, hormone imbalances, electrolyte imbalances, structural defects, pulmonary hypertension, and I am sure there are more I just can't think of them. 

I see.  Well I’ll bring them up to my doctor tomorrow.  Thx

[Bb92]

I had my blood pressure measured again today and it was 91 for the top number, I didn’t catch the bottom but the nurse said low.

 

My heart rate was 80 something. When I stood up my heart rate rose to 120 then steadily went to 117. My blood pressure went up which probably isn’t pots but I have read about hyperadrenic pots?

 

That heart rate increase is over 30bpm so could suggest pots. 

 

Seeing a cardio specialist soon I hope...

[StayAtHomeMom]

Your blood pressure is supposed to go up when you stand. It is just whether it is significant up. My ups something like 10 points when I stand but most of my doctors keep saying my blood pressure is too low (110/70 sitting while on beta blocker). I think they seen it drop on my TTT so they think it always drops when I stand and it doesn't. 

[Pistol]

I have hyperadrenergic POTS and in my case HR goes up when standing but most importantly my BP goes up significantly and stays up. When I am in a flare I can go from low to high in seconds and often it stays up until I lie down.