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Take the POTS challenge test


Merrill
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OK, folks--here's a story for you. So at 12:20 a.m. last night (this morning?), I had been asleep for about 45 minutes (no ambien, taking no meds at all, just vitamins and zicam), when all of a sudden I wake to feel first a strong cramp in my left foot and then, within about a second, the cramp "traveled" to my arms. My upper arms, between my elbows and shoulders but closer to shoulder (BOTH OF 'EM) seized up with the most ferocious cramps I've ever experienced. Like the charley horse you get in your calf--only this time in my arms! (Who gets cramps in their arms? Anyone?) I'm in agony, right? So I whip out of bed screaming and collapse on the floor--just buckle to my knees and fall over, screaming. (Poor hubby.) Then of course begins the hyperventilation (is that what rapid gasping for breath is? Didn't feel like prior apnea/gasping episodes--apnea isn't what woke me anyway.) and the dizzyness and general weakness. Did I mention tachycardia? Not yet? So I'm doubled over on the floor and not at all sure what's happening to me ... wondering if I should ask for an ambulance but hoping this was just a freaky pots thing...

Anyway--the adrenalin surge got my guts in gear so I crawled to the bathroom... while there I thought I could pass out--the weakness, the lightheadedness, a bit of nausea--like the worst flu I ever had (only I don't have the flu and didn't have it last night)--and the intense pain in my arms is ongoing. Going to the bathroom was way more work than I had the energy for... but hey, people with pots do hard things sometimes, right?

Finally the monster that was gripping my upper arms let go, leaving me unable to really lift them. I felt so weak, no hand strength, couldn't lift a cup of water to my mouth. Oh, did I mention incredible thirst? When I first made it to the bathroom I was so hot and craved a wet washcloth on my neck; then of course the chills set in. I tried to take my temperature but since my breathing hadn't yet normalized I couldn't hold the thermometer in place. What next? I collapsed again on the bedroom floor for a while, unable still to really lift my arms much... Eventually I made it back onto the bed... Lying down made the dizziness much worse, so I sat up and cried hysterically, still gasping for breath. (Can you tell I was scared?) Eventually I was able to start talking, which helped, and my breathing normalized and I felt somewhat better. Except for the fear about what was going on and the incredible tiredness in my arms...

The dizzyness passed, and I laid back down and listened to my sleep/meditation CD and fell asleep.

Any guesses?

I actually have some now--I've been on the phone all morning, trying to talk with various doctors... Called a 24-hour nurse hotline and was told I might have had a heart attack and should have gone to the ER (oy) but that I should definitely get ahold of my cardiologist. I didn't agree w/her guess, tho she did scare me anyway. I was able to page the cardiology fellow who assisted in my original diagnosis--he was sooo nice and put my mind at ease about everything. I do have an appointment now for the 8th with a new internist (my old one decided to retire at thanksgiving and I hadn't lined up a new one before now). I really want an MRI --Nina, are you there? I may be joining you and others in cervical spine ****; misery loves company, yes? (I don't think I ever mentioned on the forum my own chronic neck/shoulder pain that I believe now is the cause of the numbness and tingling in my hands that's been going on for months now--and may also be responsible for the arm cramps...) The doc also suggested possible electrolyte imbalance (although I have been drinking my gatorade somewhat religiously) as well as low potassium or magnesium. So I'm eating a banana and I'm gonna go looking (finally) for Opus's referral for the source of magnesium lactate.

Sorry to have gone on so long; I was thinking about y'all in the middle of the night--and I wanted some way to capture and record what happened.

Thanks for listening!

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Oy, indeed!

Glad you're following with medical help. As for my thoughts on possible things that could cause such stuff:

potassium imbalance (low) can cause severe cramping

spinal nerve compression/irritation

That's all I can think of :) I had many similar wacky symptoms in the months before my surgery at c5-6.

Currently, due to the 2 heriations, I'm having terrible muscle cramps in my trapezius muscles, triceps, biceps, pectorals. I cannot fully open my elbow joint right now because the muscles are so crampted up.

I hope that it's just a wacky one-time event for you. It still wouldn't hurt to get an MRI of your head and spine--just to cover your bases.

nina

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Hi,

it could be due to anything from dehydration to low potassium to just plain overexcertion of the muscles from too much strain on the muscles to thyroid problems. sounds like you also had a panic attack of some sort while this was going on, you should have went directly to the ER while this was going so they could draw your blood to check your levels for the above.

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Hi Merrill,

I had something very similar happen to me about 4 nights ago. The weird thing is, I too, have been battling a nasty cold. The attack hit me laying down as well, in the middle of the night, which was also very odd. I get the severe cramps usually in my thigh muscles, but I do get them in my neck and my arms too. I literally can't move when I get them this bad. It was a very strange attack.

Make sure you get checked out by your doc. I didn't, but I sometimes, although rarely, get these weird spells, so I am a little used to it. I asked Dr. Low about them once, and he was stumped as well. :)

Anyway, hang in there, and know that you are not alone (although I know it is really terrifying, especially in the middle of the night :D ).

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merrill,

i am very worried about you!

but, glad that your sense of humor is still intact! :D

i won't win a cookie though :), b/c i don't have any answers for you!

just that, this incident won't let you putz any longer on the stenosis stuff...funny how the body lets us know sooner than we would prefer! just when i think i am on top of things, a new thing turns up.

that is very, very scarey what happened and i would have been scared too. i am glad that you are getting in touch with docs today. please, please, keep us posted on what you find out...

b/c i have the jewish worry gene you know...

emily

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Hi Merill, wow that is soooo scarey. I don't know how you managed to fall back asleep. If I wake up in the night with an episode it's almost impossible for me to calm back down until the sun is up. I agree with the other posts as far as reasons for the cramping. I've never had the cramping part happen before (but i've had everything else you mentioned...and it *****!)

I am curious to know why the nurse thought it was a heart attack? And what did your cardio say to allay those fears? Please do keep us posted.

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Merrill,

Wow, sounds like a very scary episode.

The only think I can think of is that the cramp might have been related to neck issues. And that the pain might have triggered everything else that happened.

I have disk herniation at C5 and C6 and have problems in my arms sometimes. Tingling and mild cramping. Nothing as bad as what you experienced.

Keep us posted re: what your DR says. Like Emily I also have the Jewish worry gene.

GayleP

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Hi, guys--thanks for your notes and concern!

Nina--that's so interesting that one of your symptoms of your herniated disks is muscle cramping...I should have paid more attention in human physiology class so I'd know where those muscles you named are ... :) I think the ones that cramped are the ones on the underside...you know, the ones that jiggle if you're writing on the chalkboard? Which are they? (I guess that's the fat jiggling...but you know, the ones above that, on the underside of the upper arm.)

I will definitely be asking for an MRI when I see the new doc in a week. (She was recommended to me by a relative who's the head of pulmonology at the children's hospital here--and it helped me to learn that the cardiology fellow I talked w/on the phone today seemed to know her well.) Of course I'm nervous about what it will show--it sounds just horrible what you're going through! I hope the therapies you're trying will start to help!

Sally, I think you're right about the panic attack...funny, that part started instantaneously with the cramping. I could NOT get hold of myself or control the gasping for anything--seriously, took about an hour to normalize! Good grief, as Emily would say.

Avais (and others), it definitely helps to know I'm not alone (which is the only way to feel when this stuff whacks you in the middle of the night...my poor husband did his best to respond to my commands (water! washrag!) but he was as stunned as I--maybe more so! Funny too, I had a few thigh cramps lately too--never had them before! Sounds like you're feeling a little better after your nightime adventure? Hope so!

Emily--I'll definitely keep you posted...I'll be OK ... it's nice to take a sick day and just do NOTHING. I feel a nap coming on...

Gena, I would never have fallen asleep afterwards if I hadn't listened to that CD. I've mentioned it before (and Earthmother has some similar products to look into) ... It's the sleep CD by BelleRuth Naperstak (http://www.healthjourneys.com) Last night I didn't try to do the guided imagery really; I just listened to the soothing sound of her voice and tried to follow a certain recurring melody in the background music. The music after the imagery always puts me to sleep--and every time, I wake up to the graceful sound of the player crashing to the floor. That's my signal--time to take the headphones off! But I usually can fall right back to sleep.

What the nurse said about a heart attack is that women don't typically have the same symptoms as men...I can't remember what exactly she said we DO have (maybe the part about both arms affected?) But she mentioned chest pain and I said (more than once) "but I didn't have chest pain" and she mentioned pain in my arms and I said "but I'm pretty sure the pain was muscular--from severe cramping." I think the nurse hotline folks can be very helpful, but when they don't know, they always say ER or the most dire thing they can think of to cover their bases and make sure you get care. She promised to call back in a couple days to see what's become of me. Nice.

The cardio set my mind at ease in a couple ways: he asked my age and whether I was still getting my period (which I am), and because my stress echo last year showed no signs of heart disease--statistically it was so highly improbable that he was willing to say it didn't happen. He also seems more knowledgable than most about POTS, so certainly we talked about that. And he asked how I was feeling today and believes the lingering weakness is muscular.

For those w/upper arm cramping episodes--do you too experience ongoing weakness and fatigue and tightness afterwards?

Thanks.

m

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merrill,

you made me laugh out loud! i guess i do say good grief a lot!

AND...guess what? i have those belleruth naperstak cds too! i have several of hers b/c i have never found any better than hers! i can't believe there is someone else out there who loves them too as much as i do. she has the funniest name. :)

i feel a nap coming on too...the crash hit me now and i feel awful...so at least we can be two peas in a pod today! anyway it is windy and dreary here anyway. a good day to stay inside and rest.

glad you made lots of good calls...it always feels good when you actually get led in the RIGHT direction for all of your effort! you know? i hate it when i call the drs. and get no where.

i really hope tonight is restful with no more episodes.

thanks for keeping us posted. nap for me now.

emily

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Hey

EXACTLY what Sally said x2.

I've been calling the doctor/seeing the doctor for over a year about this kind of problem. From the bottom of my feet, calves, arms, neck, back....I get these horrible charley horses. Now they have progressed into a burning muscle cramp sometimes. Occasionally they set in with every step that I take.

I think it usually has something to do with dehydration and low potassium. I know that when I don't go for IV fluids when I know that I need them the cramps continue for longer periods and a worse intensity.

In the beginning they would treat me with quinine (which definitely didn't always work but it did help sometimes.)

I really think there isn't enough good things to be said for IV fluids. Dehydration is a funny/serious thing for a POTS patient.

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Merrill,

with the c5-6 issues, my problems ran all the way down my forearm, and into my hands. the muscles just below my elbow would ache.

I haven't been told which discs are the ones I have herniated now. The muscles I told you about are the ones that are at the back of the upper arm (yes, the jigglers in some people :) ), the muscles that run above and under hte shoulder blades, the muscles under my arm pit, and the pecs run from the shoulder joint across the front of the upper chest. I also have had some twitching in my obliques, which run along the upper and mid torso, around the ribs and abdomen. I'm currently unable to fully open my left elbow joint because muscles above or below are so cramped (I think that my doctor called that "clonus"? can't remember). Geez. I sound like a mess!!!

I hope you don't EVER have another of those events. :D Nina

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I have terrible migrating neck, shoulder, and upper back pain, discomfort and spasms from taught muscles that sometimes affects my upper arms as well. It usually starts up in the morning after I've been standing for 1/2 hour and then I get dizzy trying to get my son breakfast and out the door to school. And I don't have any disk herniations. You mentioned that the adrenaline surge forced you to the bathroom. I have noticed that when I need to move my bowels, whether I'm initially aware of it or not, that I have a great increase in symptoms. And other times I know that being under stress will cause me to run to the bathroom, like in a busy grocery store. Your episode definitely sounds scary and needs checking out. Hope you don't have any more like it. Martha

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Dear Merrill, Boy do I know where you are coming from. Been there and done that so often it isn't funny any more. I get those lovely (NOT!!!) cramps everwhere with little or no warning and WOW!! do they hurt. I also have chronic pain in my chest wall, constant nasty ache and burning with occasional muscle spasms. My docs just blow me off. I have never been past the X-ray stage. Sometime I would love to have a MRI just to see if there is anything is there. Oh well, that is life.

Painfully yours, Blackwolf :P

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Guest tearose

I saw this rather late Merrill, sorry to be so slow! Hope you slept better last night.

I've been trying to figure what I think happened...be forewarned, I'm coming down with maybe a cold so my thought processes are getting funky...

...also, I wanted to give myself a chance at the cookie:

I think it was a potassium issue that triggered your flight and fight response. The problem with these fast on and fast off symptoms is that you really need to capture the bloodwork at or near the time of the incident.

Here is my failsafe answer: this one should get a cookie just for creativity...?

Your body was conducting a test. It was only a test. It was a test of the emergency response system. In the event of an actually emergency you would have been directed to the emergency room. That concludes the test of your emergency response system.

(which means you'll never know, it was an adventure in dysautonomia)

That's all I have for you, take care, tearose

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Tearose, you are two for two, my friend. You have really been making me laugh today, first in response to the article on tainted milk and now this. :D I swear, if you're this funny catching a cold ... may you stay under the weather a long time. Is that mean? Sorry ... I just love to laugh, I guess. :P:D:lol:

Thanks, Blackwolf, and everyone who replied. I've never met anyone who'd had cramps in their arms before--and trust me, I've been doing plenty of asking around the last 2 days! Unheard of in the general population; common in ours. We're some team, huh? Good thing we've got each other!!!

I didn't have any remarkable episodes last night; I awakened with numb hands a couple times--this time on the right; typically on the left. Go figure. And I don't sleep on them!

sleep safely and well, my friends.

m

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Tearose,

If you don't mind I think that I have to print that off and save it for the days that are like that.

Merrill, just one more thing. Sometimes my spasms are so hard that I have to use the other hand to straighten out the one in spasm ( imagine me sitting cross legged on the couch crocheting and suddenly my arms are twisted messes covered with the projest of the day). Or worse, waking up my hubby to come and straighten me out ( or just laugh at me). I crochet at nite when everyone, except the cat, is sleeping and I can't.

Blackwolf

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Guest Julia59

Oh the dreaded cramps. A lot of upper body pain can come from cervical spine issues. I'm with Nina----maybe get an MRI of brain/cervical spine if you can.

I'm kind of going thorugh some pretty freaky times also. Tonight we went to visit my Son at Starbucks to congratulate him for getting a shift manager position. My husband and I went next door to Chico's clothing store---and while standing there It felt like all my blood drained on my right side and pooled in my gut---and my heart kind of flip flopped I think---it was so fast so it's hard to tell.

I've had a virus---respiratory--------screwing me all up----"WHAT A MESS"---as Betty Davis has said in her old movies. I also get terrible cramps in my upper back and right arm--down my clavical and right shoulder blade, and finally down my chest. At times I swear i'm having a heart attack. I'll ask my husband for an emergency back rub to rub it out----I don't care if we are in the middle of the mall----he'll rub it out.

All the crazy stuff that happens to us---I swear....................!

You know how some people have thyroid storm? I wonder if you had an autonomic storm? It sounds like your sympathetic nervous system kicked into high gear. It wouldn't hurt to rule out any heart issues also.

I hope things turn out better for you soon.

Julie :0)

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Cookies: "Take two of these and call me in the morning." Have you tried that yet merrill? eating two toll house cookies to see if it makes everything 'go away'? :D

just teasing you!

anyway, bumping up this topic to see how your 'doctoring' went today (that's how my grandma would say it).

guess what? off to eat dinner!

i ate some gluten-free, dairy-free, egg-free, corn-free choc. chip cookies today...and guess what? they weren't toll house, that's for sure.

emily

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Oh, I wish the doctoring were happening today! Gotta wait til this Wednesday afternoon ... No upper arm cramps since last week; just a few foot cramps during the night and a ridiculous amount of numb and tingling hands episodes--both during my waking and sleeping hours. Never thought I'd say I'm looking forward to an MRI!

Those of you who drive--do you ever feel (what you can only imagine must be) the blood draining from your hand and forearm if you raise your elbow up to rest on the side of the door--at the base of the window? (For those of you who don't, I guess this would happen any time you raised your hands above heart level.) And may I just say ... isn't this annoying? I mean it's no big deal, really, just goofy!

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Merrill,

Glad you are keeping your spirits up!

I just wanted to say that the hand and arm numbing used to happen to me ALL the time, particularly at night. And it is more than just your hand being "asleep". The doctor thought maybe carpal tunnel but I knew it was just probably POTS in all its weirdness. I had already had all the MRIs and nerve conduction and muscle tests. The really strange thing is that after several years of having these symptoms very frequently I don't think it has happened this year....I haven't thought about it until now.

I think the autonomic firestorm is a good theory. It's also one of my favorite expressions when things start going really bad really quick. My family will ask, what the heck is happening and I'll reply...just another autonomic firestorm!!!

Sleep or at least rest well til your appointment.

Geneva

(Emily, I have noticed that you almost always sign off because you are hungry!!!! Can it be???? So far, I think tearose may be your toughest competition for the merrill cookie award....but maybe Merrill is making an entire batch...enough for all of us!!!)

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