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Mestinon is another drug they might try for you. The key is getting a doctor who knows what the heck dysautonomia is and what to do about it! So frustrating that you haven't found your medical team yet. Once you do, you'll feel so much better (I did).

HI Sparkle 73, are you looking for ways to keep exercising? If your doctor has cleared it, you could try recumbent bike or lying down exercises (basically anything you can do on the floor, face up or face down. Don't give up! Exercise has a major long-term benefit for dysautonomia...it really helps the nervous system regulate itself.

My symptoms are all over the place...like I'm the ball in a pinball game. Mestinon seems to be helping but I'm not fully titrated yet. I'm wondering why more people aren't taking it? It's an acetylcholinesterase inhibitor (increases acetylcholine levels) at the neuromuscular junction...so like right at the veins that aren't sending the blood back to your heart.

Diazepam mimics the chill out neurotransmitter GABA so it will generally slow things down for you. I've had to use it a few times and it didn't help me sleep, oddly, but definitely made me high...even when I cut the pills in half). I wasn't going for high, I just wanted to sleep so I stopped it. Can you swim or do reclining bike? Exercise can help A TON but it's so hard to do it with ******* dysautonomia symptoms always getting in the way!!!

My heart is beyond fine...my lungs too. All the tests demonstrate that I have an athletic heart and my lung capacity is like 148% of normal. The point is, you can have dysautonomia and have an otherwise gorgeous heart and lungs...as seen on basic tests. When I got the level 3 stress test (including heart catheterization), they found that my veins are not returning the blood back to my heart...normal returning pressure is 12-20 mm Hg and mine was 0-2 mm Hg. Apparently, the lack of innervation or misinervation of my veins makes them wicked lazy!

Hormones definitely are involved. I have the same experience as others with symptoms around my cycle. Also have myometriosis (endometriosis in the uterine wall, not out in the abdominal cavity) so I have a little extra estrogen from that I guess (based on what earlier posts said...I haven't researched). But I have a cytochrome P450 variation that I'm wondering if others have? I am a poor metabolizer of CYP450 enzymes 3A4/5 and 2C19...those are the ones that metabolize hormones (and oral steroids). So, it seems there could be a link between higher estrogen levels (caused by endometriosis and the CYP genetic variation) and the dysautonomia. Anyone else been tested? These are genetic tests I had to get after being hopitalized for a possible absence seizure. My husband figured it out (he's a biochemist) based on the long list of medicines I can't tolerate and the big bad drug ketamine that I had a severe adverse reaction to when I received it for anesthesia (when I had some ovarian cysts removed). I'm 48 and eagerly awaiting menopause!!!

I'm glad the med change is helping. If it continues and there's no obstruction, just start trying what everyone here recommends. I have to take two capfuls of miralax every night. The Calm Mag also works but I find it a bit more 'spurty' (so gross) than the miralax. Good luck!

"If you're still breathing, it can't be that bad" Jon Kabat-Zinn I just ordered the How to be Sick book. Accepting reality has not been easy for me. I used to be totally hyper and my career is based on being 'super smart'...and that is a joke when you have brain fog everyday. But, after years of illness, I'm still relatively happy (just coming out of a few months of really sour mood anger right before getting diagnosed...the diagnosis definitely helped). Here are some ideas that might help: Watch a funny movie everyday, right before your boyfriend gets home. Then, tell him about the funny parts. Try to find funny stories to tell; practice them with your cat. Play practical jokes. Start a gratitude journal. Write down five things you can be grateful for each day. When the negative thinking comes up, do ANYTHING to redirect your attention. Maybe get a good computer game (I like Civilization VI) or start knitting or stand on your hands or lift up your legs and 'draw' the alphabet with your toes or sing out loud. Just do anything to break the negative thinking habit. What you do doesn't have to be nobel prize worthy, just try to find something that is neutral (not unskillful). Maybe your boyfriend is trying to yank you out of some depression or maybe you need to cry on someone else's shoulder for a while to give him a breather. I don't know but it would be good to be in a living situation that accepted you as you are with people who can see your glorious true nature in the midst of all the dysautonomia ****. But, having a safe shelter comes first so try to make the best of where you are (assuming its a safe shelter)!

I have lightheadedness without tachycardia. I haven't worn a monitor yet (although it may be coming soon) but I've seen my HR down in the low 40s a few times. My symptoms definitely come and go. I've had a whole weeks where they were so mild I was able to be fully engaged with life. The next week, in bed for more than half of every day due to shortness of breath, dizziness, and brain fog. My period definitely affects my symptoms...just like you, 1-3 days before and 1-2 days during you can pretty much just put me to bed. But the higher dose of mestinon (90 mg TID) is helping keep me functional in the midst of that. I was super athletic before this happened but now if I do just 30 minutes on the ellipitcal or hiking or 40 minutes of weight training, I'm wiped out the next day. So, I'm trying to do shorter bursts of exercise throughout the day (5 minutes yoga, 15 minute walk, 5 minutes calesthenics, 10 minutes ellipitcal...all hours apart). I think the big thing to keep in mind is that dysautonomia makes NO SENSE! I'm working on trying to notice reality (I have a big denial, I can shake this off history) and then accept it instead of being totally pissed all the time

I have the same experience. Yesterday I was sitting, happily chatting with my friend when all of a sudden the shortness of breath and dysphonia came on. Totally unprovoked. There was no emotional trigger (laughing or crying), no physical trigger, just the randomness of dysautonomia. This is the tricky part and why it can be hard for others to understand..and for US to understand!

I was diagnosed a couple months ago after they did a level 3 stress test (where you're on the bike with the breathing tube in your mouth and the EKG leads on your chest but you ALSO have an arterial line drawing blood every 30 seconds and a catheter going in through your jugular vein to your heart). They found that not enough blood is returning to my heart from my veins (normal pressure is 12 to 20 mm Hg and mine was 0-2). That causes the main, limiting symptom of shortness of breath, dizziness, and brain fog. But there are plenty of other symptoms like trouble swallowing, chronic constipation, visual disturbance, low blood pressure when lying down (80/40s), bradycardia (HR in the 40s sometimes), blah blah blah. I've been slowly titrating up mestinon since July and am finally at a dose that is really helping. I get about 4 hours out of a 90 mg dose and then I start to feel the symptoms returning. TONS of powerade zero and a very high salt diet help. Also, I just have to lie down and rest a lot with my feet up. Compression helps a bit too, particularly in the torso. I love to exercise but I found that I can't weight train yet as it wipes me out for a couple days after I do it. Same with longer time on the elliptical or longer hikes. So, I'm trying now to break my cardio up into shorter bits like yoga for 5 minutes in the morning, a 20 minute walk at noon, 10 minutes on the elliptical in the evening, and 5 minutes of yoga before bed. (I was very athletic before this all happened so this is a major slow down from what I think I should be doing.) In the long-term, exercise will definitely help the prognosis. Try to stay positive and accept the reality of what your body can and can't do. Before getting diagnosed, that was the hardest part for me. I kept thinking I could just will myself to get up and go again or 'fix' my shortness of breath. Ha!

I have those symptoms. You may have POTS or a different form of dysautonomia (I don't have POTS but have dysautonomia). Getting someone to diagnose you is key so you can get on medicine that may help. In the meanwhile, try hydrating with gatorade or the like...all day long and more than you think you need. Add a high salt diet on to this and see if it helps. I did this and my improvement was a key part of getting the diagnosis.

Before I started Mestinon, I was drinking 3+ liters of Powerade Zero a day. It helped tremendously (but I was in the bathroom all the time). Getting your fluid volume up can help force the blood up to the brain.

I'm also being treated in Boston and had the skin biopsy two weeks ago. It was easy and hopefully it will find something useful. The place you get the MRI done matters a lot because of the type of MRI machine they have. The new machines are stronger and, for neuro scans, that makes a huge difference. You want at least a 3 tesla magnet. Most of them are 1.5 tesla, which is fine for your knee or hip, but not your brain.

I have vision trouble every day. It coincides with shortness of breath and dizziness. I think the pupils have trouble dilating/constricting and that's the source. Sunglasses help a bit.

I have the same question. I haven't flown since being diagnosed. I have several flights coming up. I have a great deal of SOB, dizziness, and dysphonia when I flare up. I'm taking mestinon and am titrating up to 90 mg TID and that is helping. I wish I could get Powerade Zero through security...

I add several grinds of sea salt to EVERYTHING I consumer. I've been juicing a lot lately and I grind about 10 grinds into a juice. For the green juices, it actually tastes better, I think.