Debbie Rose

I get chest pain whenever I over do and its pressure tightening...I had a stress test last year so I know its not my heart

Metoprolol 25 mg once a day

Make sure you are not exercising to close to bedtime-sometimes that can interfere

Wow! I have been on 3 antidepressants for forever for Clinical Depression, Fibromyalgia. The one med does help me sleep too...But I guess they won't help me with Autonomic symptoms though

Can you describe the clonus and is it always there or does doing something cause it to occur??

There are plenty of other medications that are SNRI's that can help so talk to your doctor about options

When I first crashed from drinking a large glass of Orange Juice and then went to work, my blood sugar was dropping an hour and a half leter and was 71 (friend diabetic tested me) I bought myself a glucometer..Having only carbs-like cereal and then nothing else for 2 hours drops me to 47-51 range with alot of symptoms. Ususally eat small meals all day ONCE I start eating but rarely eat breakfast. So this was a surprise. I am a carb addict-ice cream and chocolates in particular but have learned to eat a protein and veggie meal before indulging.

I have a hiatal hernia that slips back and forth so I have to avoid large width of spandex but my pants have been rather tight on me when I am at work-I think that is one reason I don't have too many symptoms-is that possible??

I too have some bowel issues but since I have not been diagnosed or tested I'm not sure how bad but I never had a problem with constipation as I have been recently...just another symptom to add to the othersw

When I first started with symptoms I read everything I could and one of the things I read from 2 different articles was that although our BP and heart rate respond to the changing of positions abnormally; there is also,something weird that can happen with exercise. Depending on the cause

some POTS people have trouble with their heart rates NOT going up to the expected rate based on exercise numbers...I found this myself and it was perplexing..I can drop my pressure to 84/56 and my HR to jump to 168 if I get up too fast but my HR when I walk on the treadmill for 20 min. at 3 mi./hr and 3% incline is only 107--quite odd indeed!

I recently discovered Quinoa and it is very high in protein and can be mixed into hummus or eaten as a hot cereal-lots of ways

ever since my gastric bypass 9 years ago I have eaten small meals...I love the string cheeses they have out now, and I bring fruit cups (in own juice) or occasionally jello cup to work with me. I only get nauseous on occasion and always thought it was from my surgery....smoothies help me then and dry toast

Katybug, I HAVE to eat something before I go to bed and found 2 slices of cinnamon raisen bread-toasted with butter works for me--odd isn't it??

Thanks Peregrine, I had looked into it and know a few people with it..Hopefully they will look into it too

Yes, NMPOTSIE, the swallowing problem has been ongoing and getting worse. And sometimes, especially after eating I feel like some of it has gone down my throat because I always cough up some liquid.

And at times it seems I choke on fluids and foods and it definitely goes down the wrong way because I start barking like a seal to cough it up. I had read that gastroparesis can be a problem with some syndromes, and I have dry mouth-maybe dry throat? as well??.

I'll definitely let you know what they say

I've had 2 MRI's a year apart and showed same 2 lesions in occipital region that could indicate demyelination---but MS has been ruled out

Mine can go down to 40's at times but mostly mid 50's

Hi, my name is Debbie and I was so glad to find out that I am not alone.All the writings said how rare these conditions were so I had no idea how many others were afflicted by them...So here is my story

I am A registered nurse, for the past 36 years and when I don't know enough about something I investigate...

I have struggled with depression my whole life but was never on anything until I was diagnosed with Fibromyalgia in 1995. At that time I also found to have sleep apnea so I started using a C-PAP. Once on the antidepressants and sleep med my symptoms of pain and fatigue lessened for a while. But I realized that as long as I was overweight my pain would not improve.

In 2003 I had Gastric Bypass and lost 120 pounds and my pain was gone....But the fatigue was constant with boughts of brain fog and memory problems

Due to the fatigue problems I couldn't work at a hospital unit any more so I started to work in a Dialysis Clinic and did OK till I got transferred and the clinic was poorly managed and I started to be stressed ALOT!...Then I tore my biceps muscle from my rotator cuff and couldn't work-that was March 2010

A new kind of fatigue set in making my arms and lesgs heavy. Within an hour or so from waking I became so fatigued I couldn't move or hold my head up. In May I went to watch my son play ball and we were sitting in 70 degree weather but it was very sunny and as the temperature rose a bit I started to feel very ill.I was in bed for 3 days, unable to move.

After that day I started to have blurred or double vision alot and my bladder started to hesitate before functioning too along with numbness and loss of sensation in both feet and left lower leg

It was then my PCP thought I may have MS...MRI showed 2 lesions in occipital area which could indicate demyelinating process-radiologists opinion

Went to one neuro who flashed lite in my eyes and did other tests for strength and sensation and told me I didn't have MS and that the lesions were atrophy...No explanation of what to do from there..nothing

So I went for 2nd opinion...this guy didn't even have a film lite to look at the film under...again more poking and walking and checking....this one said it was left over from a severe concussion I suffered as a child...Again no further instructions.. no concern. But he did agree that I was a bit off balance with some neuro deficits

So I put things on hold till I moved down fro MD to NC and then saw a neurology Specialist in MS--ran all the known tests which were all negative-decided I had "pain-free-benign Migraines" HUH??? As time went by more symptoms kept appearing one by one

Going back a bit-and always thought it was related to fibromyalgia--Dry mouth, difficulty swallowing-feels like lump in throat sometimes...for years

In 008 started to have feelings that I couldn't get enough air in-had to take deep breaths or yawn

By fall of 2011 I started to have dry eyes and blurred or double vision when very tired

Then that fall I started to have feeling like I was going to pass out along with rapid heart rate-bought a BP machine and found it veery low when I got up. With the rapid heart rate I also had Chest pain and shortness of breath, sweats...Saw cardiologist-stress test-Echo and a month on an Event Monitor--"heart is fine"

I had to ask for medicine to decrease symptoms and placed on metoprolol-which worked to inprove 80% of symptoms

Since then my balance and loss of sensation, numbness and tingling increased,found taste and sense of smell was decreasing, my dry eyes got worse too. (can slice and chop an onion with NO tears or burning of eyes)

Another significan deficit since May of 2010-my ability to read books and retain what I read-gone

Had vivid imagination and thinking planning mind-gone-I can't hold one train of thought for more than a minute

My mind is blank!! No imagination or ability to plan in my head--really disturbing

So thats about it-oh yeah-just this past month I've become easily hypoglycemic if I eat any amount of carbs without other food-like cereal-drop to 51,as low as 47 and the symptoms don't come on till I'm in the 50's-really scarey

and of course my normal temperature has always been 96.9, my hands, feet and nose always cold...still heat sensative and exercise intolerant too...I probably missed a few things, my memory is not all that great.

But so glad I am here and have others to learn from.

I have an appointment at UNC Neurosciences on August 3rd so we shall see

Sorry this was so long

Thanks for listening, Debbie

Thanks Bren,

Very sad to hear the news but not the most important of my senses anyway-ON the Bright side-I can diet more easily!!

I have been hypoglycemic for over 30 years and can predict it because it always followed a stupid sugar binge. To prevent it I would always eat a meal before the sugar craze... Suddenly this past 2 months I am "Crashing" suddenly without my chocolate binge...The first time it happened I was at work and it was 71--I had had orange juice that morning...THen I got a glucometer to keep tabs and I am dropping as low as 47-to 51 range after eating any complex carb (like cereal) without adding a protein....Its so odd and it hits me really fast and by the time I realize whats happening the symptoms start-tremors, anxiety,cold and clammy and feeling faine my sugar is already in the 50's. Have not yet been diagnsed but sure its at least POTS....

Just some info on the "Dawn Pheonomen with diabetics-33% experience this- If they do not eat enough carbs before bed and their sugars drop to a dangerous level the liver will start to release glucogan-a form of glucose stored in the liver-to raise the blood sugar until the person wakes in Am and eats....Just FYI

3 months after my first "flare my MD put me on 40 mg for a month, tapering by 10 each month with a dose of 10 mg my goal as regular dose. IT WAS GREAT!! I was cured!! Little fatigue, clear mind!, good memory, no blurred/double vision and normal bladder function....Ran out once I moved to NC and new Neuro ruled out MS and would not perscribe it...Shortly after that I started to have more symptoms which continue to keep adding up

Hello Bren,

I am new to the forum with no official diagnosis yet but am sure I have pots and maybe more...Recently along with my dry eyes, My sense of smell has become very poor. I only smell something if I am right on top of it. I've had dry mouth for years so I always thought my taste was less acute in part due to it. With my dry eyes (or maybe sense of smell problem) I can cut up a huge onion and not shed a tear, or have burning of the eyes-nothing. Sorry you are experiencing this but glad I am not alone

Debbie

I bought the vest, wrist wraps, bandana and hat and they are AMAZING !! Thought I had MS- was Heat Intolerant for whatever reason. Bought these and I was able to be outside for around 2 hours (didn't try longer-too afraid) they didn't evaporate, kept me cool and if I had had the strength to squeeze out the vest better I wouldn't have gotten wet at all....Really worth it

2 years ago I had a MRI done when my MD thought I has MS. It showed 2 lesions that "could" indicate MS...Went to 2 neurologists-one said it was atrophy but did not say why, what to do-nothing...and the other said it was a result of a severe concussion I experienced as a child. Again no instructions,concerns..even though I still had severe fatigue, numbness and less sensation in my feet and left leg, was off balance, had double vision and urinary hesitancy

...Moved fron MD to NC saw a specialist in MS-new MRI-still had lesions...told I didn't have MS-went thru ALL the tests (blessing there) but no further explanation except "benigh painless migraines" WHAT?? Ya gotta laugh sometimes

Hi ALL, I have been trying for over a year now to be given a diagnosis. It seems every 3 to 4 months I develope something new. Most recently I have developed low blood sugars after eating a complex carb meal-like cereal for breakfast.I have dropped as low as 47 (norm-8- to 120) and symptoms don't start until I hit mid 50"s-very scarey...Has anyone else developed this symptom as their autonomic disorder progressed??

Iam new and will tell my story when I get home from work tomorrow.