Surely I Can't Be The Only One...right?

[ophelialit]

Soooo, I've been struggling with an odd symptom on and off for the better part of 15 years, and I've not yet found anyone else who can really relate. It popped up again this weekend, so I thought I'd reach out to you fine folks to see if I truly am the only one in the universe with this particularly sucky symptom!

Whenever I'm extremely tired (and I'm definitely so after this weekend--3 straight days of mandatory 12-hour meetings--gack!) or wired (the servers at the meeting facility accidentally switched the Regular and Decaf coffee pots 2 days in a row, so I ended up with a double dose of caffeine--gack again!), I develop what I can only term as right-sided weakness--the right side of my body feels, for lack of a better term, WEAK, yet neither my strength or my mobility is affected in any way.

For example, the right side of my face feels like it's drooping, but a glance in the mirror reveals that it's not. My right leg/foot feels like it's dragging, but it's definitely not. I feel like I can't hold a pen with my right hand, but guess what? I am! At the same time, I get "cold" patches on my right leg/foot even though they aren't cold to the touch. I used to worry about strokes/TIA's, MS, etc. but, as I said, this has been going on for the better part of 15 years and only occurs when I'm extremely tired or wired or both. I've had MRI's, so no big ol' tumors in the head, either. My old neurologist said that it's a stress reaction and that one side of the body can actually go numb for short periods of time. I've never had THAT, but this ***** plenty all on its own....sooooo, anyone else out there? Hello? Hello?

[tinkerbella]

Sorry you have this horrid symptom ophelalite. For me it's the left side of the body... Many other potsies have also told me this also. My stroke like events they were chalking them up to a variant of a migraine years ago. I do agree it is worse when I'm extremely tired and my muscles are trying to hold me and they just can't. This past year I was also dx with Mitochondrial disease. One of the co2 chains. I would make sure you bring your own coffee in for meetings. I can't trust when a coffee shop makes it for me.

I have to laugh "old neuros blame everything on STRESS," hope you have a new younger open minded one. I hope you can get this all under control. Also, on here I put a list of all the products that caffeine is hidden in. Foods and meds that you wouldn't think of. So check that out also. Feel better.

Bellamia~

[Katybug]

I don't have exactly the same symptoms but some similar things and they do always occur if I am tired. I sometimes trip (always by stubbing my left toes on the floor) and it feels like my leg was too heavy to make it through the whole stride. I I am holding something in my left hand, I will sometimes drop it but my hand is still holding it" just not tight enough. It has happened with paper, pens, and a coffee mug. It also becomes hard for me to control my handwriting when I am fatigued. I also have right side migraines and the right side of my face droops when I have one (you can tell by comparing my eyebrows, eyelids, nostrils, and mouth.) Although, I have noticed this week, that the drooping is not going away after the migraine pain is gone (very attractive .)

I was fully under the impression that all of this was (other than the facial drooping) was due to cerebral perfusion causing some neuro issues. But, at my neuro appt. 2 wks. ago, my neuro said he may want to do some skin biopsies for neuropathy if we can't explain some other symtpoms I'm having with an endocrnie workup. So, that makes me wonder if maybe I do have some neuropathy. (I'm really so sick of chasing a dx right this minute.)

Anyway, not exactly the same, but similar. Hope you a least feel like you are not comletely alone.

[Chaos]

Sounds similar to what I experience. In the past it was my left side only and varied from day to day. I never related it directly to fatigue but I will have to pay more attention to that and see if that's the case. For example, I would trip myself multiple times a day for a few days when walking because of catching my toes as I walked and then I could go for weeks and never have it happen.

More recently I'm noticing it happening on both sides. But similar in that it "feels" like I'm weak but I can still stand and walk etc so I know I'm NOT "weak" in the traditional medical sense. BUT, I also notice that while I may be able to do something once or twice on those days (like lift an object etc) that I can't do it repeatedly or if I try to force the issue, I'll end up in worse shape.....if not immediately then the next day for sure. Or like others have mentioned, my "timing" is off so when i go to pick something up, I just knock it over, or I drop it or I don't have the right pressure on something so it falls, or.....It doesn't happen all the time. May happen every day for a couple weeks, and then not be a problem for months.

You're definitely not alone with this symptom.

[tinkerbella]

I just want to add that I've had the skin test and they have neuropathy before they found POTS. My neuro uses me like a voodoo doll sticking pins everywhere asking if it hurts? Do you notice when you hurt your hands or feet or do you find out when you take off your socks and see a cut or a huge bruise? I have to be very careful to watch my hands and feet and know when to get to the ER before it's too late. Never walk around if your feet should fall asleep, sit till they wake back up. I've had a broken foot and many sprains due to lack of feeling/numbness.

[ophelialit]

Thanks for the feedback, all! I do wonder about the migraine aspect ("silent" migraine, perhaps?), but mostly, I'm just frustrated and annoyed by the whole thing--feeling "strokey" isn't really all that much fun! I have an appointment with the famed Dr. Abdallah here in the DC Metro are in July, so I think I'll ask him his opinion. (I've asked every other doc in the universe, so why not add another into the mix?) Headed home from the office soon to see if some downtime and rest will bring everything back to normal--though I doubt I'd know "normal" if it pinched on the behind! Ha!

[Katybug]

Yeah...it's no fun. I've told my mom that if I am ever having a real stroke or heart attack, I'm in trouble because I've gotten so used to the weird neurologic symptoms, the chest pain, shortness of breathe, and nausea, that I wouldn't go to the hospital.

chaos - Yes, me too, these symptoms will happen several times in a few consecutive days and then I'll have nothing like it for weeks or even a few months. Then, all of a sudden, wham!

I hope we all feel better soon!

[ophelialit]

Katybug, it's so funny that you would say that! My husband and I were at a dinner party recently, and a woman was discussing her recent heart attack and the symptoms that convinced her to go to the ER (pressure in the chest, jaw pain, shortness of breath, dizziness, fatigue), and I thought to myself, "Yes, I call that MY LIFE!" I would NEVER have gone to the ER with those symptoms because I'm used to them...I joke that my tombstone is just going to read, "I TOLD you I was sick!"....sighhhhhh.....good times!

[Relax86]

"I joke that my tombstone is just going to read, "I TOLD you I was sick!"....sighhhhhh.....good times!"

Ophelialit....this made me laugh. It's also somewhat sad...due to the fact that there are some times I totally feel like I might just drop dead...and people might think...."jeez, Tracy was right, something was more than off with her"

[tinkerbella]

You gave me a good giggle too. I needed that. lol ~

Same here about feeling like I might just drop dead too.Thought I was going to last week on the bus ride home after surgery all alone scared to death. Wondering if I should have the bus driver drop me off at the hospital, but he probably couldn't because I didn't ask for that when I ordered the ride. lol..My neuro told me now with the added mito... that with the Chest Pain they might not take it seriously that I could be having a heart attack. I hate going to or rather being sent to the ER over and over again for Chest Pain. I swear my chest must glow in the dark now.

[Chaos]

Yeah...it's no fun. I've told my mom that if I am ever having a real stroke or heart attack, I'm in trouble because I've gotten so used to the weird neurologic symptoms, the chest pain, shortness of breathe, and nausea, that I wouldn't go to the hospital.

Katybug, it's so funny that you would say that! My husband and I were at a dinner party recently, and a woman was discussing her recent heart attack and the symptoms that convinced her to go to the ER (pressure in the chest, jaw pain, shortness of breath, dizziness, fatigue), and I thought to myself, "Yes, I call that MY LIFE!" I would NEVER have gone to the ER with those symptoms because I'm used to them...I joke that my tombstone is just going to read, "I TOLD you I was sick!"....sighhhhhh.....good times!

Ha Ha!! When I was "sent" to the ER once by the doc at my cardiac rehab place, it was a total disaster. But when they discharged me home, they gave me a list of symptoms that would warrant a return visit to the ER. I told my husband that since I had 80% of the symptoms right then and there, I didn't see why I would EVER bother to go back and be ignored again. My rule for him to follow is, "if I'm conscious, I'm NOT going to the ER".

And Ophelia, you're right....I hear people talk about having ONE of the symptoms I have and how they went to the doctor about it and I'm thinking....really??? You went to the doc for that one little thing? Yeesh!

[ophelialit]

So, it's the next day, and, sure enough, the creepy "strokey" feelings have passed....only to be replaced by chest pains and shortness of breath....awesome sauce! I'm with you, Chaos, if I'm conscious and able to TELL you how crappy I feel, let's all just assume it'll pass at some point. Of course, with my luck, that will result in a necessity to change my tombstone inscription to "Ooops!"...

[Chaos]

So, it's the next day, and, sure enough, the creepy "strokey" feelings have passed....only to be replaced by chest pains and shortness of breath....awesome sauce! I'm with you, Chaos, if I'm conscious and able to TELL you how crappy I feel, let's all just assume it'll pass at some point. Of course, with my luck, that will result in a necessity to change my tombstone inscription to "Ooops!"...

LOL. you crack me up.

[Guest Alex]

Ophelialit,

Thanks for bringing this up.

I've experienced occasional episodes of numbness/pins and needles/painful tingling mostly on the left side of my body (rarely the right side). It mainly affects my arm and leg. I can use the said limbs perfectly fine ...they just feel weird - heavy, foreign... Sometimes these episodes last for minutes, but I've had them for hours as well.

One of the ER drs I mentioned my problem to, laughed at me and told my husband (who was worried sick) that I have problems "up there" and if I were to take my meds then I won't need to come to the hospital in the middle of the night.

But then again, I've mentioned POTS to several medical professionals and I have seen some interesting facial expressions... Looking back, I believe they might have thought I have a catering business or so.

For what it's worth, you are definitely not the only one with this "reaction".

best

Alex

[brethor9]

stroke like symptoms were my first presentation with POTS.....it was terrifying! I would keep getting told it was anxiety or migraine and being sent home by the ER when I was walking into walls. I started to deteriorate so badly the dr I worked with was worried I was showing signs of MS.....did lumber tap etc...CT's, MRI's to rule everything out but that was a year after onset.......(I always kept thinking I could be dead before they take it seriously) when I started florinef the symptoms started to get better but I still get bad flares. Like every one else here I would never be able to tell the difference if I had something life threatening scary

Bren

[Katybug]

Maybe my tombstone will read, "It takes too much energy to go to the ER." I am positive of only one thing about POTS...You better have a GREAT sense of humor!!

[derekliz]

Katybug and Relax86....your comment made me laugh but it reality....we just have to hope and pray we never have a heart attack or stroke!

[bellgirl]

I have problems that wax and wane with my right side neuritis, heaviness, numbness, electric shock type pain and stroke like symptoms, trouble forming words on occasion (or saying the wrong ones), memory loss, vision issues, and I have stroke in my family, too, so it is a concerning issue for me; I agree with all of you, I will have to be really dying to go to the ER again, because being there for 8 hours after coughing up blood once, was enough for me. I had to be checked for a pulmonary embolism by a lung scan. I'd rather be home than in the hospital; I'd rather be laughing than crying, any day, so thanks that you all have a wonderful sense of humor!!

[ophelialit]

It is SO nice "hanging out" with all of you--it's like belonging to a sorority, just with less boyfriend-stealing and fewer cheap-wine hangovers...at least I hope so! I remember the bad old days (before I had any idea what was going on with me physically) when I would go to the ER with great certainty that I was mere moments away from a really exciting demise and being treated as if I was actually slightly delusional and potentially dangerous. It was very frustrating, so I absolutely hesitate to seek out emergency medical care for the whirlwind of symptoms I experience on a daily basis. I hypothesize that we are far more attuned to our body and its functions than the average person, so we'll likely know the difference between a "typical symptom" and a "911! 911!" moment should something critical ever arise. Yes? Maybe? Wishful thinking?

[blueskies]

So agree with the ER thing. In Australia all ERs are in public hospitals. You can wait 8 hours before you see a doctor, sometimes. Depends on how busy they are. And how sick you are. The good side is there is no money to pay. We've already paid for it with medicare levy tage taken out of wages each week. And if you don't work you are still eligible.

I used to get one sided numbness when I got migraine sometimes. I think it was called hemi-plegic migraine. I'd find I couldn't move. Not that I'd want to. It was scary but it stopped happening although migraines continues.

I have a numb big toe. I think I may have hurt it at some point because the toe-nail is bruised in a spot and lifting. I have had pain in my back ever since I had a laminectomy (slipped disc) operation on my spine May last year. Leg pain (caused by slipped disc) went away but pain in back is right at the scar site. I've had it since the operation and thought it would eventually stop (was told by neurogsurgeon it would) but it's getting worse and as I said, I think a nerve to my big toe might be damaged. It's on my right leg and that's the leg I could not use properly without extreme pain when my disc slipped. I'm really hoping to make it to my CT scan appointment tomorrow. I've cancelled three appointments with them because have been so POTSy lately.

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