facial twitching.. speaking difficulties

[dizzygirl]

Hello all

I am having things happen to me, that normally do not happen.. I am wondering if any one else experiences this..

Yesterday, i started getting twitching in my face, all around my eyes, cheecks and mouth, even in and across my nose.

right before the twitching started, my vision got really messed up, i am not quite sure how to describe it, like looking striaght out, all the way around was like I was seeing double, just around the edges of my eye. and it was very vrey blurry.

Then, after the twitching started, I began, having difficulty speaking, i knew what i wanted to say but could not say or pronounce anything, and when i did speak, it was slurry, and hard to understand...my tongue felt very "WEIRD" the only way I can describe it is weird!

and my body felt weird in general, i just did not feel right, it was different from my usual potsy feeling..

I ended up in the ER yesterday... they did give me oxygen and an IV of fluids... but i had allready started to feel better by then... I waited over 4 hours to be seen.. what i was feeling last about 2 hours..

the ER doc did not even know what POTS was, he said that there was nothing that he could do for me, and that I need to follow up with my neurologist in pittsburgh...

I'm like.. i just cam back from there I dont have the money to go back there again!..the ER doc said that it sounds like I had a seizure.. and the neuro said that it sounds like I am having convulsions!

How terribly frustrating...

thanks for letting me vent!

[Laura]

Hey there! Boy, you are having an awful time! I can't remember, did you say if you had a MRI or CT scan when you were being seen in Pittsburgh? Did you get a BP reading when you were experiencing this? Were you tachy at all? Just wondering if you were having a seizure related to decreased blood supply to the brain.... Also, have you had your blood sugars checked to rule out any problems? People can experience these symptoms (and seizures) from low blood sugar. Are you able to do a phone consult with the neurologist and have any test he wants done performed where you are and results sent to him? Or maybe he could reccommend a neurologist where you are to see you, order test, and consult with him for results/treatment? You HAVE to get this investigated further! You could start by calling your neurologist's office if you can and discuss what your options are. If this is not an option, you have to be seen by someone so maybe try at your family doctor and see what they think the next step should be. I'm so sorry that you've been having such a time! Laura

[dizzygirl]

Hi laura,

Yes i had an MRI done, 2 of them actually in the last few weeks.

On the 2nd MrI, they specifically looked at the pituitary gland, and they saw "something" on the pituitary gland, but they were unable to figure out what it is.. they could only get a look at it from one angle..the neuro tht i seen said that i will more then likely have to have the MRi repeated, in hopes to get abetter look at what is on my pit. gland.

I do have diabetes, but it has been running around 140, so not to bad..

I havent been tachycardic too terribly much in the past couples of days, my heart rate is beating much slower then it normally does (my propranolol was just increased from 60mg 3x' a day to 90 mg 3x's a day), so that is more then likely why it is so much slower, HR is running in the 50's

I had another EEg done friday in pittsburgh, to see if there was any seizure activity, and to see if my brain functioning has slowed down any more.. the last 2 EEg's i have had done have showed slowed brain functioning.. but they are unsure of what is causing it..

Yesterday during the "episodes i checked my BP it was 80/55, alittle low, but i have been much lower then that in the past.. I spoke to my cardiologist during the attack and he told me to get to the ER.. but the Er doc didnt even know what pots was.. and in the end said to go back to pittsburgh to be seen.

I would much rather be seen in pittsburgh, but I just got back from there and it took every cent I had to stay there...

So I will defiantely be calling them tomorrow(neuro) and seeing what more can be done..

sorry I am so long winded tonight!!!!

its just so scary when these things happen.. and you dont know what is causing it or what is going on!! thanks for listening!

[Sunfish]

yep, i'll second that it definitely is scary. and i can't imagine how much more frustrating the situation must be since you just got back from the pittsburgh trip. ugh. you really do need to call though, and in that regard there is probably some advantage to your just having been there since the doc will have recentely seen you in terms of knowing how you were doing "face to face." i know this is still new but you'll be more on his radar screen. have you had any other med changes other than the beta blocker increase? i can't imagine how that would be causing the issues you describe (obviously yes for the lower HR &/or BP but not the twitching/speaking issues) but on the other hand nothing would surprise me. i've definitely had/have twitching at times but it's not a prevelant...it's generally in one spot for a short time and switches from place to place all over my body but most often in my limbs. good luck with getting some feedback from your doc on the phone & hang in there,

:-)melissa

[joyrose]

That is scary. Really scary. By any chance did you have neighborhood mosquito spraying right before this happened? Whenever we have it in the summertime, my speech becomes halting for about 4 days. It takes so long for me to get a sentence out and since I can never find the right word I just make up my own.

The spray is a nerve poison and considered "safe" for the general public. You can call your city or county to see if they do spray by your house so at the very least, you can shut your windows. Otherwise, you may need to take more drastic steps.

Whatever is going on needs to be investigated by a doctor. You've done the right thing to pursue answers. -Deb

[Laura]

Hi! Were you able to contact anyone yet? Any plans in the making? Hope your doing OK! Hang in there! Laura

[MightyMouse]

Those are definitely symptoms to be checked by your neuro or other doctor(s).

[yogini]

I don't think I've had twitching, but I did have difficulty speaking for the first week or 2 when I got POTS. I know exactly how you feel - it's like the words were right there but I couldn't get them out. In my case I think I didn't have enough blood going to my head. But yours might not be the same - good idea to get it checked out soon....

-Rita

[dizzygirl]

Hi

i saw my family doc yesterday, and she is at a loss, of what may be going.. she is wondering if Migraines are causing it... but I have not had a headache with it, atleast this last time around..

she was going to call my docs in pittsburgh, and see what they thought... I did try calling the neuro in pittsburgh, but nobody has called me back yet....so i will have to keep bugging them!

I have not been feeling very well.... on top of all the POTS things going on.... I caught a bad stomach virus... or my doc thinks that I got food poisioning..

I'm like my god I cant win!!!!!!!!! When it rains it pours!

thank you all so much for your support and concern... your all great

I'l let you know if I get anywhere with these doctors...

[Rita]

Sorry your feeling so bad I have hypoglocemia with my syncope/orthostatic intolerance as well. Ihave found that when checking your sugar levels there are actually times that you should do it for accurte results. I always check my before each meal anf then two hours after each meal. You should especially check it before bedtime. I also will have shakes, vision trouble, slurred speech , as well as see little fire flies. Next time you feel this way try having a coke and some peanut butter and crackers. Make sure you make your awn peanut butter and not the store bought ones already made, use saltine crackers. You can also use just plain white bread with your peanbutter, unfortunately you will still feel bad for a while but your mainly just sleep. Ask your doctor to do a three hour gluclose test this will help to determine if it is your sugar. And you can also have a seizure if your sure is to low, sometimes it is not neccessarily how low but how fast it drops.

Hope you can get a little help from this!!!!!!!!!!!! Rita

[dizzygirl]

Hi rita,

thanks for the tips!

How do you make your BP? I love Penaut butter, and at times crave it really bad, and eat it by the spoon ful, (weird I know)..

I must say that when I am feeling bad I do not think to test my blood sugar, just my usual times...

I will talk to my doctor about the 3 hours gluco test, what exactly is involved in that?

thanks again

Linda

[blackwolf]

dear dizzy girl,

i'm so sorry anyone has to go thru any of this. much less deal with terrible docs on top of it.

as to your symptoms you are having, i have been doing the same thing for about 3 months now, just add in nasty body pain, tons of nausea, walking, talking and swallowing trouble and you are just where i am.

i am also struggling with some docs, but not others, i have some info as to my troubles but i am also looking at at least 3 more mri sessions(one for my head and neck and one for my middle/low back) to figure out what is up and how to deal with it. i have had enough blood drawn to black me out and more pumped in, of course, everything was NORMAL!

WHATEVER.

best of luck and i hope we all get some answers,

blackwolf

[dizzygirl]

blackwolf...

hello..I get alot of the symptoms that you mentioned...have for along time now.. I had an MRI back in 2001 of my neck that showed I have a herniated disk at the c5-c6 level, and that my spine is rotated at the top and my spine is curved in the shape of an S all the way down my back.(scoleiosis)

I actually have wondered if any of this with the neck and stuff will affect my pots.. I should ask.. I never thought to ask before.. I think that that is the cause of alot of the pain I get in my back and neck....

sorry I dont know where all that came from!!

My family doc just gave me a script for nausea, tygan, thank god for nausea pills!

I hope that you have luck finding some answers, and I hope that you all begin to feel better.. or stay feeling good!

HUGS

Linda

[dizzygirl]

oh yeah,

i did want to mention, my cardiologist who is treating for pots, is great.. very willing to help me feel better.. its all those other docs I have aproblem with!

[smiles]

I also have convulsions and slurred speech. My slurred speech preceeds and is during an autonomic flare up. Convulsions are signs that something else is usually wrong with my body. I am having them now and looking for help. Salt tabs help. Fluids help. I don't know the cause of these yet. Sometimes the drs. can't figure it all out either. Mine start on the right side of my face and proceed from there. Very frustrating. These now are happening when I eat or drink. will call my Dr. in the a.m.

[persephone]

Linda the first thing I thought when I read what you said was MIGRAINE. Those are all features of a migraine aura- and sometimes it's possible to get the migraine aura without the migraine itself. It can impair speech, consciousness, cause twitching and tingling, even paralysis. It can also cause confusion and anxiety. I get a lot of those symtpoms, but not very often. IF it is migraine, it's easy to treat, so don't worry!

Hope this helps!