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Stroke like symptoms with POTS?


veryperry
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Hi I am new. I was diagnosed with POTS this year. I hope you don't mind, but I need to tell my story to someone who might have some insight. And since all my symptoms seem to be pointing me to POTS over and over again, I am sharing my story with you.

In December 04 I had stroke type symptoms (ie heaviness on my RT side followed by numbness, then neuralgia as the numbness wore off) It was hard for me to brush my hair for a while and write checks for awhile. I felt like the right side of my body was dying. I felt like I had been slammed up against a wall. All that, was followed two weeks later with extreme dizziness and more fluttering, heaviness and pain in my chest. I went to the ER Christmas night. They gave me aspirin and nitroglicerin patch. That helped so much! The waves of chest pains, heaviness and tackycardia left for at least a week, but then returned but not as bad. Then I went to the ER again with the same heaviness in my chest along with strange feelings in my right eye. My eye hasn't been the same since. The muscles that help my eye look to the upper right get fatigued very easily and can't look up as far as my other eye. In the end all of my tests for stroke came back negative And I was prescribed CALAN for my supposed migraine which made the heaviness go away for months but made my left arm very sore. But my dizziness remained along with tingling and numbness. My neurologist diagnosed me with POTS type 1.

On top of the stroke like symptoms, I felt like my organs had stopped functioning properly for a day or so, around the same time was having the initial stroke-like symptoms. I started feeling like I had a urinary tract infection so I started drinking lots of water. (that helped alot) I could also tell my bowels weren't feeling right. But what could I do for them? I didn't have a BM for a while and when I did, I found blood clots in my stool. Then ended up discovering I was cronically constipated after my Fam. Dr sent me in for an X-ray. I started seeing a GI specialist and have ruled out cancer. Every thing he looks at seems to be normal. My Fam. Dr.. thought it best to treat my symptoms separately. I have gone along with that, but I have felt like these symptoms were all related.

Florinef has done wonders for me. My dizziness is mostly gone along with the anxiety I was feeling. The numbness and tingling is gone except for a place in my cheek.

I get a sore pressure type feeling on the RT side of my head. It radiates down to my nose and chin and my nostril closes and that side of my face feels heavy and swollen and my right eye doesn't move well. I have also lost some sensation on the right side of my face. When I drive with the AC on in the car, my left check is much more sensitive to the cold than my right cheek.

Has anyone experience anything like this with their POTS? One of my fears is that I could be developing shy dragers syndrome. Am I worrying too much? I probably am.

Thanks for listening!

Veryperry

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This is a difficult topic for me to reply to but I will try. First off, I do not have POTS but MVP with severe dysautonomia with NCS and tachy-brady. I also have the recent "formal" diagnosis of dysautokinetic-dysautonomic syndrome. Before I go further, let me state that I am a tall, thin thirty-one year old woman. My life changed completely in August 2002. Right in the middle of graduate school, I began expereiencing stroke-like symptoms on a transient basis. One night, I was so severely impaired that my colleagues from grad school took me to the ER. The ER doctor dignosed me with a hemiplegic migraine (atypical, as I had no migraine pain but paralysis in lower extremities combined with seizure-like sxs, as well). The ER doctor was not too concerned about the migraine as I had a normal MRI the week prior. MS was suspected but the MRI ruled that out. What the ER doctor was concerned about was a very loud heart murmur. I had began seeing a neurologist in the month prior due to nasty migraines and the stroke sxs. Once I followed up with my neurologist on the morning following the ER visit, he felt I should receive a cardiological opinion as well. At this point, I entered the world of dysautonomia. My cardiologist is the one who diagnosed me with MVP with dysautonomia and all the other terms previously used. For the next year, I saw my cardiologist and neurologist monthly. I had every imaginable neurological test and many cardiological tests that year. Finally, after a year of not really knowing or fully understanding what happened that night I was taken to the ER, my neurologist finally admitted that I might have had a small stroke- which is what I had thought all along. I have never been the same since that night in August 2002. It was two years before I could walk to my mailbox without being noticably impaired. I walked like a drunk. My eyes were horrible- especially, at night. My hands still are tempermental- my right one, especially. So, this is a very long answer to tell you- yes, I have experienced those "stroke like" sxs with this nutty dysautonomia stuff. And yes, the term SDS has been used interchangeably with dysautonomic-dyskinetic syndrome. I'm not saying this to concern you but to let you know that some things don't add up in all of this. I may or may not have had a stroke and I may or may not have Shy-Drager. I do know my life has changed completely in three years. I would love to answer any other questions you may have about all this and pray that you do not have the same diagnosis as I.

Carmen

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I've had weird stroke like symptoms- I even posted for advice on here and people thought I might be having a stroke- my bp was almost 200/150, and Iwas numb down one side etec. A neuro thought it was familial hemiplegic migraine, but I have not had this diagnosis confirmed or treated.

I don't know the answer to these questions- I just wanted to say that I have experienced something similar.

I have POTS NCS, EDSIII and what appears to be some kind of tachy-brady thing going on that no one particularly is bothered about examining or fixing ;)

But I know how alarming the 'strokey' episodes are. Mine wear off after a short while- perhaps demand a second opinion if yours are persisting and compromising your health to such a degree as you're writing about. You deserve better than living with this.

and Carmen- I wish I could say something to make it ok for you- I can only offer a hug ;) .Sorry :)

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hi,

i had stroke like symptoms too, numb down one side especially my face, my eyelid and mouth were drooping and i couldn't see out of one eye, i was also diagnosed with migraine - but i've had brain scans and an EEG and they don't know what caused them.

i'm also tachy most of the time and i have pots and vvs.

these symptoms seem to have stopped (touch wood) since i started on my medication (florinef and paroxetine)

Hope it gets better for you.

becky x x x

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Hello and welcome, I am glad you found us. I think many of us went through periods where we wondered whether we had something rare and progressive like Shy-Drager. Shy-Drager is fairly rare, and is generally in men over 55. POTS is more common, especially in women from puberty to mid-fifties. I am not diagnosing you--just making that statement! Hopefully it is comforting to know that autonomic dysfunction is more common and is not progressive or life-threatening.

I also had stroke-like symptoms in the past with POTS--sudden slurred speech, weakness more pronounced on one side of my body, significant problems with balance and gross motor coordination. All of that has improved immensely for me over time and with medicines that helped in my case.

Glad you are improving overall. Take care and don't hesitate to continue to ask questions.

Katherine

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Welcome,

Does your doctor have any idea what is causing your POTS? If your stroke-like episodes persist I would ask the doctor if it's worth evaluating for mitochondrial disorders, which can cause stroke-like symptoms and dysautonomia. It could also be causing your muscle weakness and eye symptoms.

Good luck!

Ariella

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Welcome! I also had stroke like symptoms. I was initially sent for repeated MRI's, MRA's and MRV's because the docs were so convinced in their own heads that it couldn't be anyting else, but I finally went to a highly experienced adult neurologist who said no way I had a stroke and was eventually (almost 2 years) seen by a dysautonomia doc. These symptoms are so worrisome. I was on blood pressure medication (calcium channel blocker) for about 8 months at one point because my BP was all over the place but generally high. I was in constant pain and was non-functioning. I have been making turtle-speed progress with massage, stretching exercises and swimming over the last year with many setbacks. Martha

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veryperry -

welcome! sorry to hear of the rough time you've been having but glad you found the forum. there is a lot of good info & great people to go along with it:-)

i too have had stroke like symptoms that never were really explained but resolved on their own. one time a handful of years ago my roommate found me passed out on the floor & i woke up with my left arm completely numb & useless. after a few hours and a quick trip to the campus health center (i was an undergrad at the time) it was off to the ER where they went into "stroke mode" quite quickly. i hadn't realized it myself but my left eyelid was also sagging a bit and i was dragging my left leg. they didn't have a proper bed available so moved me via ambulance to another hospital where there were extensive work ups for several days. my arm gradually improved as did the rest of my symptoms although on neuro tests my lower left side is always a bit weaker still. not something i notice though on a day to day basis so no complaints. they never did have a clear answer of any sort for me. everything from a small undetected stroke to some acute reaction to a virus to who knows what else was mentioned. thankfully i have not had similar episodes since with the exception of once with my eyelid only (which also improved on its own).

the issue of what exact category one fits in can be scary and like has been said is something most if not all of us deal with at some point. for me i've had a major elevation of symptoms over the past year encompassing more body systems so it is something that has definitely come up. odd as it sounds though i've actually had symptoms for too long to have to consider a SDS diagnosis. like has already been said there are certain demographics which, while not a guarantee, can be reassuring. ultimately none of us know for certain where things are headed but for most there are ups & downs (pun intended) over the years.

again, welcome.

hang in there,

:-)melissa

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Hello, I am new here as well, I have been diagnosed with POTS, Hypovalemia, Mast Cell Activation, OH, and NS.

When I had my first attack I was suffering from stroke like symptoms on the Right side as well. I was 17 years old. My right arm and leg balloned up and turned a lovely shade of blue. I wsa like that for about 30 days and it went on and off after that. I had trouble writing and even walking after that for a long time and sometimes still do. I was told this was definately not the pots doing this to me. Its good to know others are hearing the same. I am glad to know that it is not unusual for these symptoms to happen. I am just glad i now have people who are just like me. It helps to be able to talk to people who know how you feel.

with much hope,

Lindsay

Edited by MightyMouse
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lindsay -

just wanted to say welcome to the forum. i'm sorry you have reason to be here but glad you found us. i was 18 when i had my more significant stroke-like episode so was similar to you age-wise. (i'm now 25 & have Autonomic Neuropathy, POTS/OI, NCS, Cortisol Defiiency, & more...)

nice to "meet" you & hope to see you around.

:-)melissa

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Melissa,

Thanks for the nice hello, I am not sure everything I have yet so far I know POTS, Mast Cell Activaton, Im Hypovalemic, OH, Syncope, Fibromuscular dysplasia. i am kinda lost still to everything. I was hoping mine would get better but over the years it has just gotten worse. And everytime I get one symptom controlled ( or get used to it) another one happens. It is so difficult to deal with. Well, thanks for being so welcoming.

Edited by MightyMouse
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Hi VeryPerry, I somehow missed your post the first time around, but just wanted to extend my welcome to you...and to say that I hope you find much support here. :unsure: Nina

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