epaulovits

Not much to add... Get a TTT and find a doctor who is familiar with POTS, if not a specialist. I realize the good ones are few and far between, especially up yonder. Have you checked the physicians list on dinet? And definitely start by doing your own poor man's tilt - blood pressure readings are good if you have a bp monitor, but more important are heart rates. Have someone with you to take your pulse (or preferably, use a chest-strap type heart rate monitor watch) and to write them down for you every minute, while you just stand.

Thanks a million!

#1--Find an endocrinologist that knows POTS. Or even a CFS or sleep that knows POTS.

Thanks!

It seems like everyone with POTS etc. have gone to this "Mayo" clinic I keep reading about. I don't think we have anything like that here in Canada. It is very very hard to talk to doctors, especially specialists (ie. neurologist, cardiologist) because one doesn't know about the blood pressure and the other doesn't know about someone with a migrainous brain. My new family doctor (so desperate to start fresh she is only a resident and has another year to go) she doesn't seem to have a clue about anything related to MVPS/dysautonmia or migraines/visual disturbance and looks at me like I'm from outer space.

I've asked two times for this catecholemine test and she's hesitated both times. I finally got her to put it on the requisition and she wrote "urine catecholemines" because she said she had never even requested it before and didn't know the formal name. I am going tomorrow to have it tested.

My neurologist once said that this "migrainous brain" is like a flaw with the nervous system. This in combination with the Mitral valve prolapse makes me think it's some sort of dysautonomia and kind of triggered me wondering about this. Perhaps, he thinks it is a dysautonomia but didn't say it like that.

I will try to see an endocronologist. They deal with hormones. I am a woman and have recently noticed facial hair growing in.

I appreciate your help, thanks!

You have allot going on. It is so very frustrating when the symptoms are very complex. That is how it is the world of POTS. It is very complex and everyone may experience things in a different way.

The only real way to find out if you have POTS or some type of autonomic disorder is to have a Tilt Table Test done. That is how it is diagnosed. You can do a poor man's tilt table test. I believe there is a thread that tells you how to do it.

I have had the sparkles, like silvery stars. I had no headache at the time. The doctor diagnosed it as a silent migraine. I guess that can be one of the symptoms. I don't know about the black spot though. Things can happen with your eyes if you have Ehlers Danlos. I have that too. There are allot of times that my vision will not be clear, kind of foggy. Like in a steamy shower room. Part of that can be connected to the ED. POTS can be connected to ED and be caused by it.

As for your legs and veins, the best thing you can do for this is the compression. You need at least 30-40 strength and the thigh hi's or full pantyhose are the best. Blood pooling in your legs and abdominal can be POTS and/or ED. The compression helps this soooo much.

As for the anxiety feel. If you have POTS, that is one of the symptoms we all have. Many get diagnosed with an anxiety disorder before we get the POTS diagnosis. So few doctors know about Dysautonomia and they want to put SOME sort of label on it. So, you get that attached to you, when the real reason for those feelings is the imbalance in your body, causing at times some pretty severe symptoms and feelings. Because there are some adrenal response involved, it does cause a fight or flight feeling. Many people do take some sort of anxiety meds and it helps to calm this feeling. But, then the meds have to be balanced with the serotonin helpers, because anxiety meds will imbalance all the other hormones. It's a careful balancing act and takes allot of trial and error. Much more error to start with.

I'm glad you found us here. Hopefully, some of your questions will be answered. We are all here to find answers and help, and to just support each other.

Your journey just begins. Hopefully, the puzzle comes together for you. Hope this has helped some.

Hi Issie,

Thanks for your response, I really appreciate it! Hopefully others will respond too!

This is an interesting website, particularily the part about the "Polapse Personality" :

http://www.mitralvalveprolapse.com/

Hi Everyone,

I am new to this forum and have been experiencing alot of horrible symptoms for a long time, I am hoping to get some feedback regarding my condition from anyone!

I have not been diagnosed with dysautonomia and just recently switched doctors due to my chronic problems and frustation with my old doctor.

I'll try to keep this as simple as possible as I have many symptoms which may or may not be related, but the following will give you an idea of what I am experiencing:

I have Mitral Valve Prolapse with mild regurgitation (diagnosed at 14, I am 33 now)

Migraine with Aura occasionaly -1 or two times a year or every couple of years

Visual disturbance everyday, multiple times a day - blue lights, black hole with sparkle around it (usually a single one, this is the most scary one) they are small and last a few seconds, mostly in response to stress high/blood pressure and even bending over, maybe standing up? I think this a result of my "migrainous brain" as I've been told by a neurologist. One says it's phosephenes (chemical and electrical changes in the brain) and the other says it 's photopsia (platelets are clumping), but how can I be sure either of them are right?

I tend to have a very high diastolic blood pressure, this might be normal so I'm not sure (although both numbers can go quite high) usually in response to stress, tension and being cold etc. The diastolic really reacts to everything as I am on atenolol 50 mg a day and it tends to block the systolic more than the diastolic. It usually goes back to normal after the incident subsides. My pulse goes high too, but the atenolol blocks it a bit too.

I am chroniclly, extremely stressed and feel I get set-off easily. I find it really hard to calm down once I get triggered as I feel pain in my limbs like nerves or pulsing sensations from high blood pressure. I suspect this pain I feel in my limbs might be nerves (not sure though) and I have noticed that water, fish pills, bananas, excercise and sunlight really helps ease the pain and tension and blocks the stress. I suspect I may have a serotonin deficiency(which could explain the visual disturbance), possibly a magnesium deficiency as well (I've read people with mvp have magnesium deficiency), I feel I also feel I might be producing too much cortisol or adrenaline.

I feel so many sensations when I am stressed it is unbelievable, I feel like I have activated some kind of sleeping monster. I guess my sympathetic nervous system may be overactive?

I have a large waist and carry most of my weight there.

I have wicked flushing and burning and I am very red in the face, my thighs get purple and red too! I have some broken blood vessels in my face, chest and arms. My chest is permanently red and looks like a sunburn, it gets worse in the summer.

I have cramps and twitches all over my body, but usually in my legs its really bad. I sit all day for work and most days it's unbearable to sit because of the mild pooling/edema severe cramping, pain, heaviness and leg fatigue, although some days it's not too bad, which is strange. I'm not sure if this is vascular, muscular, hormonal, neurological or all four, but it's extremely bothersome. I think it get's more severe in the summer due to the hot weather

This covers most of it and I'm sure I may have forgotten some things. This is what I go through everyday day. I just feel like I am deficient in something or too much of something else, I feel like I am in overdrive. I have read that people with dysautonomia or MVPS have anxiety and can't relax etc. Is this really true? I realize that everyone will have different symptoms, but does this sound like Dysautonomia to you? This is surely not healthy or comfortable to live with as I'm sure you will agree!!!

Lately my heart upon moving and even laying down goes "boom boom boom" for some reason.

The black sparkle in my central vision is what really freaks me out and I would like to know if anyone else sees this!

This is just too much to talk about at a doctor's appointment and I feel that there is too much going, this is why I haven't gotten the help I need. If you have experienced anything like I have, I would appreciate your input and advice.

Kind Regards,

Please Help!

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