StayAtHomeMom

You can buy a manual cuff fairly cheap. They come with instructions and it may be easier to get a more accurate reading. A nurse can help you if you have trouble. Personally I have issues with any one's BP except mine. Because I hear my heart beat so loudly in my ears and it interferes with the reading. With BP numbers like those I would be careful. Those are stroke ranges. I would definitely see a doctor soon.

My son started chronic headaches (at least 5 times a week) about 6 months after my symptoms started. Originally I thought is was environmental. I did a poor man's TTT every day for a month to get my doctors to take it serious and put me on a TTT. When I first started I wanted to make sure my machine wasn't defected so I tried it on my oldest and my hubby. My hubby was normal. My oldest son was not. He was 90s to 140s from sitting to standing. After my diagnosis I did a poor man's on him for 2 weeks and brought him to the only pediatric cardiologist in my area. She said it was dehydration and wouldn't even look at my data or put him on a TTT. I noticed he managed his minor symptoms well enough so I left it be. He was 13 at the time. He is now almost 16 and the symptoms are actually starting to interfere with his life so I have him scheduled with my specialist next month. It is 3 hours away but be the doctor agreed to see him. I am hoping by him getting tested and having the official diagnosis it will help point to an underlying cause. Disability seems to be a lot of hurdles. I am hoping to apply when I have an underlying cause and I get my ADD and OCD officially diagnosised. I figure it will be easier if I show mental and physical issues. I may not get a lot because I do work part time. But honestly if my job was no longer there I don't think I would be able to work anywhere else. It truly is a one of a kind job and boss. How long have you been spiraling downward?

I remember doing the same thing. Honestly I found my diagnosis and had to have a doctor confirm. I was so sick and the doctors just kept running blood work and saying I don't know. I have fully accepted my diagnosis almost 2 years later. I am now searching for the underlying cause. There has to be a reason and my hope is to treat the underlying cause so my POTS will go away.

The reason I asked about your hearing is there is a story I heard at work (we deal with health screenings in industrial settings) that this guy was like in his 70s and had to have hearing aids to turn DOWN the sound around him. His hearing was better than any equipment could catch. Apparently he had been like that his whole life though. That story has stuck with me just because it was pretty neat.

My husband has hearing similar to your first story. Have you ever had your hearing checked? Curious to if you have always been like this or just since you dysautonomia started.

Have you tried more than one beta blocker? Also have you tried different dosages?

I agree. It should be something that should be ruled out. Multiple articles talk about CSF leaks and it averages 5 years for diagnosis. Seems kind of silly that it should take that for a diagnosis.

He did a cortisol test and urine catacholmine testing. All normal.

I couldn't get my doctor do run this test for me in a way my insurance would pay for it. What has your doctor said about the results? It seems interesting.

I seem to be having issues this week too. I have always loved the winter but this winter seems to be harder than usual. I had a flare last night while I was cooking. I was putting food on my youngest son's plate and had to give the plate to my hubby because I all of a sudden felt dizzy. Checked my garmin a few minutes later and it turns out I hit over 150. It wiped me out the rest of the night. I am not sure what I did yesterday to cause it but it seems like the unstableness of the weather this last month and having to turn my heater on feels related.

Not to put a kink in the theory but could it be the other way around too? I have a friend who has pseudotumor cerebi and she has similar symptoms to dysautonomia . Her daughter got diagnosed with it as well when she was 12. Found it with an eye exam and confirmed with a spinal tap.

I get the chest pains too. It has been a while since this symptom has been bothersome for me but before I knew what was going on I thought I was having a heart attack too. I have a previous diagnosis of costocondritis so now when I get it I take an NSAID to see if it helps. I had a cardiologist rule out any heart issues and every time I go to the cardiologist's office they do an EKG and it is always fine. It took me a while after my diagnosis of POTS to get comfortable with all of the weird things and symptoms my body does, but ruling out other things helped. If you have a symptom that is bothersome you should always check with your doctor. There are other beta blockers you can try since yours isn't working. I take metoprolol tartrate. I also take midodrine (a vasoconstrictor) as needed.

I don't have a CSF leak that I know of. I just wanted to pipe in that I remember reading an article a while back that a woman had a slow leak that caused havoc. They kept diagnosing her with allergies because it was leaking out of her nose. They eventually found the leak, fixed it, and she was her old self again. A CSF leak can possibly cause our issues but I would think it would be fairly easy diagnosis with an MRI if the right person looked at it.

Have you thought about trying to get a room mate? I have a husband and kids who help me quite a bit. Maybe having someone just living with you would help out. Another thing I have seen is someone was taking about a service animal a while back. Their dog would warn them when they needed to sit or lay down so they didn't pass out. I thought it was a really neat idea.

The joys of 30s. My POTS reared its head when I was 30 as well. I suspect I have had it longer and my oldest son (who is 15) is showing signs and symptoms. Since you have your diagnosis you may just need a medication change up. And the pharmacy and the pharmaceutical companies can help lower your price. Another thing to consider is trying for disability. It may take a while but after a year you can get medicare and usually people on disability qualify for Medicaid as well. Have they ever found anything with your heart that could explain why it would stop when you fainted?

I am not sure what type of medicine that is but could your doctor prescribe something else to take the place of it?

Heart palpitations are anytime you feel your heart rate. It can be fast, slow, hard, irregular, skipped beats... tachycardia is just fast heart rate. Regular or not. I always thought heart palpitations were when it would skip a beat. So I asked my cardiologist. And he said it is any time you feel it. I can have heart palpitations just laying still in the evening. It can be annoying when I try to sleep.

I am sorry you had a rough day. I quit using the word POTS anymore when explaining what I have. I just say I have an uncommon tachycardic issue. Most nurses and doctors I don't usually deal with could care less beyond that. If they show interest I explain better. If not I just leave it. Good news is I rarely deal with medical personnel outside of my usual. I hope your flare calms down soon. I can't imagine how scary it is to have flares like that. Thankfully my POTS is relatively mild. I have never passed out yet and I hope I never do.

I have not. That being said POTS symptoms can flare after a dental visit if they use the epinephrine based anesthetic.

I have had bouts of constant dizziness. It was in the beginning of my issues and it lasted around a month. No matter what I did it wouldn't go away. I suspect my oldest son has POTS and his big symptom is headaches. He has headaches at least 4 days a week. When they are bad he lays down and they seem to ease to a manageable level. Do you have sinus issues? Have they ever investigated your headaches?

Your HR jumped the 30 bpm it needed. I assume your HR stayed elevated plus the symptoms. And that is why he diagnosed you. Your HR doesn't need to be really high to have POTS. It depends on your starting number. And symptoms. My starting numbers was always on the higher side (sitting was always high 90s). During my first TTT it started at 85 laying and stayed above 130 for the 45 minutes they had me tilted. My second TTT I don't know the numbers but the specialist I was seeing confirmed it was POTS. I don't think my second TTT was nearly as high though based on my symptoms. Midodrine is a good fit for me. Beware the tingling scalp. It is weird but harmless for me. I also take a beta blocker to help with the tachycardia and heart palpitations. It sounds like you are getting answers and that's always a good thing if you think the doctor is wrong about your diagnosis ask him why he thinks POTS is the right diagnosis.

I would say any change surgical and diet can cause symptom variations. When I started my keto diet I got the keto flu for 3 days. Honestly it was like having a POTS flare up. But I have also noticed my normal POTS symptoms will vary just based on how much I eat. I think my swinging of symptoms lately are just due to the diet changes. I imagine it will settle down. If it doesn't I am still better off then I was 3 years ago. If you have new or worsening symptoms I would let your specialist know. At the very least so they are informed. Just because you have POTS and diabetes doesn't mean something new can't crop up and the doctor can judge whether new inventions are needed. Try not to worry too much though. Stress can cause issues too.

What was your starting HR laying down? Was the doctor that diagnosed the POTS a specialist?

I could see that being an good theory. My nephew will get small seizures when he gets a fever. The fever is usually only 100 but it jumps so fast that it causes his body to react. I never thought of it that way. Maybe that is why POTS in general is so bad. It isn't the specific numbers but the fact that everything jumps or drops so fast.

Yes, I was asking you. I was curious because having both hyperPOTS and Addison's seems like it is too much. Like maybe there is a simpler solution.