ariella

Sue,

sorry it took so long to answer.The oxygen definitely isn't curing the POTS, but it is helping to stablize my HR, and get rid of the shaky-unfocused feeleing. But it's temporary relief. If, for example, I eat after the O2, it all starts up again. But it does help me focus. I notice it in little things. Now, when I rehearse some guitar I do it while on the machine, and I've noticed I've got more stamina and make fewer mistakes. Too bad I can't take it with me to the studio, it makes noise...

Lucky,

Not sure if a condenser is exactly what it is (we live in Jerusalem, and the forms are in Hebrew). It has this cup attached with water that bubbles when the machine is on, and creates oxygen that then gets sent out through a tube that goes inti my nose (tickles sometimes!) I have a tank in the house in case thre's a power outage.The doctor ordered this as opposed it tanks because tanks run out too quiclkly. I don't use it all day, the doctor left it up to me to see how much I need it.

Ariella

yes

it may help to go easy on carbs

I've been known to black out after a bowl of spaghetti (no,I'm not diabetic). Does funny things to my HR

Corina-

To make a long story short, they started me on mestinon for myasthenia gravis. I was up to taking 60mg 8 times a day. Mestinon gradually lost it's effect, both for muscle stuff and POTs (which have been feeding off eachother anyway ever since the muscle weakness started nearly 4 years ago. They seem to both be bad at the same time). Well, my muscle weakness got much worse (very ALS-like as opposed to MG). We had a pretty bad scare last month. Doctor did an urgent EMG, and found NOTHING! He was shocked. We are waiting for me to wean off of prednisone in order to test for Lyme disease (which is known to mimic both POTS and ALS) MG dx has been revoked!

I rarely take mestinon anymore, don't really nortice a difference anymore when I take it.

hi

My doctor ordered an oxygen condenser for me last week. I've been using it several times a day. Been very POTSy since mestinon lost its effect...Anyway, happy to report that so far so good. It's helping a lot.

Thought this post might be helpful to someone whose insurance will cover it. (Where I live it's given on loan from an organization that lends medical equipment)

Ariella

I've told my doctor many times that the one symptom that will truly put me in need of a psychiatrist is the constant shortness of breath (some caused by POTS, some from muscular stuff)

Have you tried changing position? I sleep more or less sitting.

thanks

I've had POTS for years, but this is the first time I really got scared (ok the second. The first is when I got a bp reading something like 55/48 laying down) It was as if I had fainted in my sleep (I'm not usually syncopal-just pre-syncopal) everything was kinda dark, and couldn't push it away.

The oxygen seems to be helping some, until I exert myself. Definitely more focused with the oxygen. The machine makes a lot of noise though, so I guess I'll only use it at night for emergencies.

hi

Now this I think is a first for me. I took a nap during the day and recall trying to wake up, and having wierd heart rate, and feeling like I had to struggle to wake up.

Freaked me out a little.

(Got an O2 condenser today on loan as oxygen seems to help a bit with the heart rhythm, and waiting for Lyme results.)

Is this being unable to wake along with chest flutters familiar to anyone?

Ariella

Gotta wait now...

Spoke with the lab, I can't send them a blood sample until I am off the prednisone for a week. That will be in 4 1/2 weeks from now. So, basically it will be 7 weeks at least until I know anything!

Are you drinking enough? Chills can be a sign of dehydration, and us POTSies dehydrate more quickly.

thanks everyone

what's interesting is that the only time I felt some improvement in my general condition is for a couple of weeks following pneumonia. Because I had??? probable myasthenia gravis (which the neuro thinks has now gone beyond and is less resembling MG...the symptoms are more ALS-like) the doctor treated me with an unusually strong antibiotic. One would think that following pneumonia I would have been worse, but it was my best couple of weeks in a long long time.

I was already in touch with one of the labs, I can fedex a blood sample over. It's simpler than I thought.

I hope it doesn't take long. I pretty much need a wheelchair now most of the day because my legs don't work. Mestinon stopped working too---both for the supposed MG and for POTS.

ps Kim, thank you for the links. I didn't see the Hebrew until Emily just poirted it out! I used to joke that the source of my neuro problems must be that my brain is fragmented from speaking 2 languages simultaneously

hi

Ernie, you earned a good chuckle...3 disorders in one body---guess that's econonmical.

I am going to call today to find out how to send whatever samples they need. Still waiting for my family doc to get back to me.

Sara, thank you so much for the info on the lab. Since I'm not living in the US now, I'm not bound by insurance (for better and for worse) and could use any lab I want, or so I imagine. Unlikely my health insurance will pick this one up. Going to call them today to find out the procedure.

Ariella

Hi

Anyone here whose dysautonomia is known to be brought on by Lyme disease who also has severe, unexplained muscle weakness?

I'm about to go for an urgent EMG, as my muscle weakness has gotten worse, and I cannot really move my toes. The doctor is questioning the original myasthenia diagnosis, and is looking for worse. I live now in Israel where they wouldn't think to test for Lyme---we don't have ticks. But I'm from New York and Pennsylavania, and lived in a wooded area with deer around Philadelphia before symptoms. The doctors kept saying that usually a person has only one major disease as the root.

Exploring this avenue now. Gosh, I wonder if they can even test for this here.

Ariella

hi

What I've found with neuros is that not every neuro is familiar with every condition enough to properly evaluate. For example, for diseases involving muscles, a general neuro will probably not make a diagnosis. If you feel uncomfortable that your doctor is missing something you may need to see someone else.

EMG's are horrible, but sometimes it's the only way. It helped me last time that the doctor explained me what was going on while he was doing it. The first emg I had done was by someone who may as well have been frankenstein's creator.

good luck! diagnostic limbo is so exhausting

ariella

yes

I've had this experience with both midodrine and mestinon, although could be that the drug is working less because of of another condition that seems to be aggravating the POTS that is getting worse...

Ariella -- which neuromuscular disease do you have -- is it MG? I was just curious b/c I also have muscle weakness/wasting, SOB and fatigue, and POTS as well, but the SOB/muscle stuff has not been figured out ... Did you test positive on the first try, or did you need more tests?

Amy

Amy-I'll PM you. It's probably MG. Long story.

ariella

I also think I have a genetic predisposition to POTS, my mom and sister seem to have some form of dysautonomia, although they are scared to be evaluated. My mother takes beta blockers for heart palpitations of unknown origin.

However, what I've been coming across a lot in my reading, is that often chronic illnesses that we are predisposed to genetically may come out in their full glory due to environment, stress, viruses etc.

ariella

ps- fascinating about Beethoven. I'm a guitarist, and I find it impossible to play when I'm POTSy.

hi everyone,

I've been giving this topic some thought as my other condition (neuromuscular) has been deteriorating. I've found some research connecting neuromuscular diseases with chemical exposure. I know that the year my dysautonomia began (and possibly also the muscle issue---SOB and fatigue) I was heavily using illustration markers containg a known problem ingredient-xylene.

Interested to know if anyone here feels their dysautonomia may have been brought on by toxic chemical exposure

Love to all,

Ariella

hi

You may want to try phoning a local high school, it's a great thing for kids to get involved in serving the community.

good luck!

Ariella

hi

I get dizzy a nauseous from sitting at the computer.

Wishing your son well.

ariella

hi

I take 60mg of mestinon 8 times a day. I take it for myasthenia gravis in addition to POTS. It has helped me a lot, but feel symptomatic as it wears off. Also, lately it is not helping my POTS symptoms as well. I'm not sure if it's because it's losing effect, or because the prednisone I'm taking for the MG is aggravating the POTS. This week was very POTSy despite taking a mestinon every 2 hours.

It's a good idea to take it with some crackers, it can be very hard on the stomach.

ariella

so the question is, is the POTS being caused by something greater, or is the autonomic nervous system responsible for more backups and clogs than we know about...???

Ariella

hi!

Was there too last wek. It seemed that the contents of any closet I opened fell on my head. I was post-strep infection. Plus the heat can't be helping. Gotta love the feeling of not being able to focus your eyes. Anyone else wonder if other people can notice when we can't focus our eyes???

are you feeling any better yet?

Ariella

Nina,

Thinking of you and your family today.

Love,

ariella

Just a quick note to say hi. Our computer burnt out a couple of months ago, finally got a new one up and running today. Apologies to the PM's that I haven't answered, I'll try to get to them tomorrow morning.

It's nice to be back!

Love, Ariella

hi

I was in a distance-study program for interior design when my POTS got out of control--and was still undiagnosed. I used to be an excellent student. I could not concentrate, despite the subject matter being interesting to me and despite being motivated. I ended up dropping out. I don't want to discourage you---I also have 5 kids and other stuff on my plate.

My 8th grade daughter is displaying the same symptoms. The pediatrician is sure she has ADD, but we are checking out whether or not she has POTS which is causing ADD symptoms before putting her on ritalin.

My cognitive function improved significantly with treatment (midodrine until it stopped working) and mestinon (until they added steroids for another condition) Now I'm back to being a space cadet.

Ariella