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. 

9 hours ago, dogmom said:

Thank you everyone for the warm welcome and advice  Reading through the forum, hearing stories I can empathize with, and seeing all the support mskes me feel very happy!

@Pistol absolutely, I've always noticed the more energy the more I move. I make it a point to get out of bed by a certain time, make the bed, and  get dressed, even if I just move to the couch. Luckily I have 6 rescue animal (3dogs, 3 cats) that keep me moving lol. Unfortunately some days just consist of sleep but it's something I continue to work on. 

@StayAtHomeMom I was late teens/early adulthood at my worst, and was your son's age when the symptoms became concerning. I can't change my medication because I wouldn't be able to get a new appointment in time, but talking to my PCM about restarting medication. I've been off for a couple of years after I stabilized. Was doing so great with my symptoms and was even in shape and going to the gym! I was on disability from age 18 to 24(?) but after i stabilized decided to get off of it and work.

My Dysautonomia history is quite a story and I hope to share the whole thing over time. Going from disabled with debilitating symptoms, to stable and able to work, back to ground zero has been the hardest hit and I feel devastated. I worked so hard and sometimes wonder why I should even try to overcome this syndrome/disorder when it's always going to be a part of my life. Even if I tried though, I'm unsure if I would even be able to get back on disability.

From my understanding, there's nothing wrong with my heart. My vagus nerve is the issue and sends the wrong information to my brain who then tells my heart to stop. No doctor has yet to find the underlying condition that causes my Dysautonomia.

@bombsh3ll yes I do  I be also have done the "poor man's"  TTT recettly and plan to keep a log. My blood pressure and HR are also normal when laying and sitting down but still feel pretty crummy. Like right now I'm sitting back with my feet up but feel like I'm not getting enough oxygen and have to take deep breaths to rid the dizziness. My heart rate also likes to skyrocket for no reason sitting down, making me feel sweaty and trembly almost like an anxiety attack (but with no anxiety).

So AGAIN that this is so long! I just have so much to say and never get to talk about it to anyone, especially to people who understand.

 

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. 

2 hours ago, Billie Gene said:

The hearing being so sensitive I never had before but surroundings yes but it’s more profound. I never got my hearing checked. The funny thing is I’m on Midodrine and Propranolol for the last eight years to control the symptoms of POTS. Well, they changed the Propranolol to Bystolic,  Which is working great but all of my senses have stoped, which I’m trying to get use to because I didn’t mind having the surrounding or hearing sensitivity because it was spot on. If that makes sense. I could met someone just by looking at them I knew they were no good or a great person because I felt it. Very strong. I could just read people. I New if someone was around my house or vehicles you know. Well, don’t have the senses now. My POTS symptoms are under control for now though, which is great. Thanks for your feedback😉

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?

3 hours ago, bombsh3ll said:

I'm sure disorders of CSF pressure in either direction can create problems, in fact I repeatedly expressed concern about HIGH intracranial pressure. I have been for repeat eye exams to exclude any signs of this. I am angry that the neurologists and neurosurgeon didn't pick up on the fact that splitting headaches when upright relieved by lying down are characteristic of a spinal leak & consider this possibility, especially when the patient is mentioning intracranial pressure (albeit the opposite concern), and has known risk factors - EDS, precipitating Valsalva. 

Maybe I don't have it, but the diagnosis should be considered and excluded, rather than nobody having thought of it. It wouldn't be OK to go to hospital after a car accident with severe leg pain and unable to walk, & nobody thinks of or looks for a broken bone. Many people won't have one, but it should be ruled out. 

I also don't buy it about lax blood vessels - surely this would have come on gradually. I would have had lax vessels at 16.55 on the day I fatefully blew up that water bomb, not just since 17.00 when it happened. Also my dad who also has EDS is 78 and has awful varicose veins and an aortic aneurism, & he can stand up!

B x

 

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. 

4 hours ago, Crazycatlady said:

Nothing yet! I’ll update once I get what he says. Just kind of freaked out about the defiency..

 

im sorry to hear that your health insurance won’t cover the test 😕 Always a complete bummer when the system won’t work. Where you able to get other tests done atleast?

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?

5 hours ago, Pistol said:

I have both - low AND high BP. I can tell immediately when my BP goes above 130/80-ish. And I feel wonderful and my BP is 90/50. All of my life I have been hypotensive and feeling GREAT with it. Only when I developed POTS did my BP go up and I feel awful when it does. So - we can totally be well with low BP but it is when our bodies are not accustomed to it tht it presents a problem. Well - wait - also when it drops TOO FAST that we become symptomatic. What do you think about this theory? 

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. 

4 hours ago, toomanyproblems said:

Hi, If you're asking me, yes, I was tested years ago for pheo but not recently. Thanks

 

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.