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I am noticing that one of my warning signs now is that my face feels vaguely numb.. almost stiff and not like totally numb, but like the top few layers of skin are stiff. Anyone else? It is weird. I mean I will take any warning sign I can get, but it is weird.

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Early on I too had the half face numbness...just exactly like lidocaine from the dentist is starting to ware off. It really felt scary. I haven't had this in several years. It would usually go away in 24 hours or so. I did have a numb spot on my leg I noticed when shaving. It has some feeling again after 3 years or so. Interesting??

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I have some very small numb spots on my face that come and go occasionally diagnosed long before thoughts of POTS ---diagnosed as facial parathesia and my neurologist (after thorough testing) concluded it was part of my atypical migraines (along with arm numbness, visual issues, other...). Now I wonder...

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  • 3 years later...

I’m dragging out this older post because Tonight I just had this feeling of droopy numbness in my face. It’s still there, but more mild after a few hours. I’ve never had any nerve issues in my face before (plenty in my arms and legs). It was only on my left side, around my cheek. That part of my face drooped. I actually felt it drop down. I asked my wife if there was anything different about my face. She Said it looked like my left cheek was drooping a little. It still responded when I tried to smile. It felt a little numb and without looking in the mirror I wasn’t sure if it was responding right. After reading the above comments I realize that it felt like  light lidocaine at the dentist office.

random symptom man strikes again!

@Wufflebear @Faye and others. Did this symptom continue or go away?

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I don't think my face droops. Mine it is just like the top several layers of skin, kinda, are numb and sometimes numb and tingly. Turns out I have a CSF leak that they think is causing that. I had a blood patch this past Thursday and for a whole day I could feel my face. lol

MIne comes and goes. The more I am up, the more it will happen.

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Wow wufflebear thanks for coming back on and sharing that!

CSF leak is what I am currently exploring - I do have mild EDS and my illness was caused by a forceful Valsalva. I am going to see a private specialist in CSF leaks this Saturday, hoping to ultimately access blood patching. 

I actually read your post above & thought tingling face - possible CSF leak because it is one of the listed symptoms (but not one I personally have).

7 hours ago, DizzyPopcorn said:

A csf leak doesnt just "happens" like that i guess?

It can do. I had a clear inciting event as I tried to blow up a water bomb that I mistook for a balloon, but many people do not recall anything. It could be something trivial like a bout of coughing or sneezing or lifting a heavy bag in susceptible people.

Connective tissue disorders are a risk factor but not every CSF leaker will have one, others will have an undiagnosed mild CTD. 

If you don't have splitting orthostatic headaches though it is probably less likely although again this is not universal. 

@Wufflebear I am particularly interested in whether the blood patch has improved your orthostatic intolerance? 

Even if I turn out not to have a leak, I bet there are a number of people on this site who do, so it is really worth spreading awareness. It is a tragedy when people end up near bedbound for years with no quality of life for the sake of a blood patch because the diagnosis is never considered. Although it took me 5 years to come across the diagnosis myself (thank you Dr Carroll) and pursue investigation, I am angry with the three separate neurologists I had previously sat in front of holding my head & nearly crying with pain, describing what I now know to be classic spinal leak symptoms, known precipitating event & connective tissue disorder, & nobody thought of it. 

B xxx

 

 

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bombsh3ll

That was the freaky part for me. Afterwards they sat me up and then stood me up and I had NO symptoms. It was so freaky I started crying and told them I needed to lay down NOW! lol The doc was very concerned until I explained. No orthostatic intolerance, no plugged up ears (i did not even realize I had tinnitus because I have been leaking for so long), no numb face/hands etc. For the first few days I actually felt worse laying down (also very freaky) because my inter-cranial pressure was doing a rebound high (very common.) After two days the symptoms started coming back, but periodically I will stand or sit and for a few minutes at least nothing happens. I usually sit back down again because it freaks me out. lol

I am told that if a blind blood patch relieves any symptoms, then you are definitely leaking. My doc chose not to do imaging first as it is expensive and has a high false negative rate. Yea honestly I am still dumbfounded... Doc thinks I have been leaking to greater or lesser degrees my entire life... 47 years... and no one figured it out. Initially I pushed back on the diagnosis and blood patch because "surely if it was something like that a doc would have found it in all these years." My doc now (great doctor) just looked at me and laughed. He has folks come from all over to see him (he is a nephrologist who finally agreed to see a child with POTS when the mom had no where else to go. He is now THE person to see around here. If you are in Oregon, or can get to Oregon, inbox me and I'll give you his name.  Not sure if I should share it openly or no. lol

I do agree with what was said above however, if your face is drooping that warrants an ER trip just to be safe. Routine POTS stuff no, but that I would go to the ER for, unless you can get into your PCP that same day.

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@Wufflebear thanks for replying, I am so pleased you had a good effect from the blood patch!! I am really hopeful that this is my issue too,  especially given my mode of onset & connective tissue disorder. 

I live in the UK so would not be able to visit Oregon anyway but I am sure it would be OK to say your doctor's name on here if you had a positive experience, in case it helps somebody else. 

If I get nowhere in the UK I may try to raise the money to go to Stanford & see Dr Carroll, or Dr Gray Leithe at Duke, but I am hoping it doesn't come to that. 

I had an MRI with contrast which was read as negative, & here a negative MRI is used to deny further investigation or treatment in the state funded system, despite picking up only 70-80% at best, but when I sent the same scan images to Dr Paolo Bolognese one of the world's top neurosurgeons in New York to look for craniocervical instability, he wrote back saying he thought I had a CSF leak, without me ever having mentioned it, or that my illness was valsalva induced, so I suspect it is not truly negative after all. 

As blood patching will likely be done blind with me as well, do you mind sharing what level(s) and what amount of blood you were patched? 

B xxx

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On 9/25/2019 at 4:46 PM, KiminOrlando said:

If your face is drooping, you should probably go to the doctor or at least call them. They need to rule out stroke. This happened to my mom and the walk in clinic saw her when we came through the door and immediately sent us to the ER. Luckily, it was just Bells Palsy. 

image.jpeg.76699edf57390494e9fbff207e82672f.jpeg  Thank you KiminOrlando for making this point.  FAST (shown in this image posted) is the acronym for remembering what to do to check for stroke vs other causes of drooping or numbness.  The impact of stroke can be reversed in part or entirely if medication and treatment is sought as quickly as possible.  If anyone has numbness in the face, do the FAST test.  1.  Ask someone to watch you smile to see if your smile is symmetrical.  If you are alone, look in a mirror to see.  2.  Raise both arms over your head.  Do both go up to the same level? 3.  Is your speech slurred or jumbled? 4.  Time -  go directly to the ER to be evaluated.  I think it is natural when we have chronic illness to make assumptions that all of our physical symptoms can be attributed to the illnesses we are already living with, but to be safe, it is important to distinguish the difference and have professional opinions.  In the case of facial numbness without any other symptoms, it is probably still a good idea to see your doctor to be sure it is truly a symptom of dysautonomia and not something like Bells Palsy.  Thanks again KiminOrlando for making this important point. 

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Sorry for the delay in responding. I had a port placed on Thursday, and they nicked my lungs, so I suffered pneumothorax (collapsed lung) and was in the hospital.  Luckily it stopped collapsing at 15% so they did not need to do another surgery. My doc is Dr. Feldman in Bend, Oregon. He is great! I believe they did 20cc and injected it right in the middle of my spine. Just one injection. It was all done under MRI and followed by contrast to make sure it was in there.

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31 minutes ago, Wufflebear said:

Sorry for the delay in responding. I had a port placed on Thursday, and they nicked my lungs, so I suffered pneumothorax (collapsed lung) and was in the hospital.  Luckily it stopped collapsing at 15% so they did not need to do another surgery. My doc is Dr. Feldman in Bend, Oregon. He is great! I believe they did 20cc and injected it right in the middle of my spine. Just one injection. It was all done under MRI and followed by contrast to make sure it was in there.

Wow im so sorry to hear that. Glad you're still around. How the h*** did they nick your lungs??? 

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