Newbie

[dogmom]

Hello everyone  Ive been searching for a active forum and happy I found this community!

I’ve had Dysautonomia symptoms like heat intolerance, Tachycardia, dizziness, and fatigue since puberty. I wasn’t diagnosed however until I fainted when I was 16 because my symptoms were always attributed to my Social Anxiety Disorder.

I was professionally diagnosed with NeuroCardiogenic Syncope (NcS) Abdul Postural Orthostatic Tachycardia Syndrome (POTS) via a Tilt Table Test.

My symptoms are pretty average to most experience with thess illnesses, but oddity is in my TTT results. When I faint, my heart stops momentarily and my BP goes so slow it can’t be detected with machines.

After being put on medications and dietary restrictions I started to faint less and less. After a year and half I stopped fainting completely, so my cardio ruled out getting a pacemaker after wearing a 2 week holter monitor.

I still don’t faint to this day at age 30, but I get awfully close, especially in the heat. Ive dealt with my Dysautonomia symptoms for the past few years very well but am currently in a bad flare that doesn’t seem to ever end. My worst symptoms at the moment is very bad fatigue (don’t have energy to get out of bed kind) and basically complete Orthostatic intolerance. Standing up, standing, and sometimes sitting up gives me issues.

My husband is getting ready separate from the Military, and only have 1 month left of our insurance benefits. I'm happy to have found this place as I feel like I’m drowning.

Sorry this is so long! Thank you for taking the time to read.

[Pistol]

@dogmom - welcome to the forum and I am sorry you are having all of these problems! I too have NCS and POTS and also used to faint frequently. I lost my job and am now disabled. What I recognize in your post is that your symptoms are very similar to mine. Regarding the flare: as you may know OI and fatigue will get worse with bedrest, so despite how bad it makes you feel you must make yourself sit up and even stand up frequently, even if it feels terrible. Also leg exercises are essential. And when I get as bad as you I ALWAYS go for IV fluids. If your doc has not yet tried them on you I highly recommend you go to a clinic or ED to have IV fluids delivered, ! l over 4 hours at least. This helps for both HR, BP and fatigue. And once the VS are controlled you can start getting up and that will in turn improve your orthostatic symptoms and fatigue. If your benefits run put soon I would see your PCP or cardiologist ASAP and have them review your symptoms, that way they can give you treatment recommendations and you may be able to get 3 month supply of meds before the insurance ends. That is what my PCP did for me when I first had to stop working and lost my benefits. --- Best of luck! 

[StayAtHomeMom]

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?

[bombsh3ll]

Hello and welcome Dogmom, sorry you are suffering but you have come to the right place to get support and feel a little less alone. 

I am 38 and have had severe orthostatic intolerance since 34. I fainted a handful of times when I was younger but was well in between. My diagnosis is POTS. I've never really found any medication with lasting positive effects. 

The heart stopping and BP plummeting are quite typical with neurocardiogenic syncope, & unfortunately pacemakers have not shown to be terribly effective in preventing fainting in younger, otherwise healthy people with NCS, but it is good that you have had a work up by a cardiologist. 

Do you have a BP cuff or a heart rate monitor/watch at home that you could use to check your numbers when you feel presyncopal? That would help provide information for your doctor which could guide treatment. 

Frustratingly when I am sitting, my heart rate and blood pressure are usually perfectly normal, but I still feel extremely lightheaded and miserable. 

I hope you manage to get ongoing medical care sorted out soon. 

B x

[dogmom]

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.

 

[StayAtHomeMom]

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?