EarthMother Posted April 13, 2005 Report Share Posted April 13, 2005 It's so hard to crash ... I can't recall how long its been since I felt this bad...All the 'normal' pots crash symptoms ... but on top of that I have this sensation on my face like wind burn. It's not on my skin, some just below the surface.Anyone ever hear of that? If it wasn't bilateral I'd swear I was coming down with shingles.Have a dr. appt. this afternoon -- with someone I don't know ... ick. Trying to hope for the best but worrying the worst about all the unknowns.EM Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 13, 2005 Report Share Posted April 13, 2005 Dear earthnother, I wish I could ease the impact of the crash...it is hard, I am sorry for that.Sometimes we can't prevent it.I am surrounding you with many soft chenille pillows and a soothing salve for the bruises and the windburn. I couldn't help it, but as you described this crash experience, I saw a rocketship that was making its way upwards and all of a sudden, it turned downwards and hit the ground and the force of the reentry made the windburn happen...that is what I saw. I hope that as time passes and your bruises and burns heal what happened was not a full total crash but maybe a redirection of sorts. I know the last place you really want to go is to the doctor! Maybe you are having an allergic reaction....maybe there is a good remedy the doctor can offer.I send you healling thoughts and visions of rockets reaching towards the heavens again!best wishes, tearose Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 13, 2005 Report Share Posted April 13, 2005 sorry to hear you're doing so badly. I don't know what that sensation is or means... The only thing I can offer is to hold your hand whilst we're down here together. Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 13, 2005 Report Share Posted April 13, 2005 sorry you are crashing, it seems to be epidemic right now. My face doesn't burn that way, but my feet sure do. Hope they get to the bottom of it and the doctor is nice. good luck! morgan Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 13, 2005 Report Share Posted April 13, 2005 That sensation must be terribly uncomfortable and I am sorry you are in a crash.All I can say is that I do get a lot of weird skin and below skin sensations as well. Nothing quite that dramatic for a long time, though. Hope this doctor can be of some help to you.Katherine Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 13, 2005 Author Report Share Posted April 13, 2005 Thank you all for the kind wishes.Tearose, I got goosebumps reading about the rocket. Very cool, I am going to use that visualization in my healing.Nina, I am so sorry you are still in the pots hole too. It's been a couple of weeks now. Poor dear. I used your 4 day rule when I got this windburn pain on my face ... figured if it didn't go away in four days, I'd go to the doctor.Just got back from my appointment and it was uneventful ... which I guess is good considering we all know how bad it can be with a new person. I am running a low grade fever, my throat is a bit streaked so he does think I could have a virus. He then left the room and phoned my cardiologist (which I wrote about last week) and when he came in he said ... I called Dr. T to ask him about POTS and he said if I wanted to know anything I should ask you because you knew more about it than any of us. I smiled. It felt wonderful to have the full attention and respect of a doctor. We did talk a lot about POTS. He said it is possible (though unlikely) that my DDAVP could be causing the facial pain -- it's easy to test, I'm already in the potshole, so I'll try cutting back of going off it for a bit to see what's what.Ok, enough upright for me .... back to bed.Good thoughts to everyone, you are such an amazing team of experts!EM Quote Link to comment Share on other sites More sharing options...
geneva Posted April 13, 2005 Report Share Posted April 13, 2005 EM, I am sorry you are in the valley and worse had to see a new doctor. Hope it went ok.I get a facial sensation that only occurs on my left cheek but I don't know that I would describe it exactly as you have. But, like Morgan I do get the burning sensation in my feet. Wish I could help more.Take care of yourself and I hope the new doctor visit wasn't too frustrating. Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 14, 2005 Report Share Posted April 14, 2005 EM,hello down there! sorry, couldn't resist. actually, as you probably know, i'm down here too...but that's beside the point...just wanted to say hi and that i hope the facial sensation subsides soon...i wonder why or how DDAVP could cause that??? did you notice a difference when you lowered your dose???i take it 2x a day, and all i know is that if i have to lower the dose i am in olympic training running to pee nonstop...which isn't exactly fun when you are in the potshole, but hey, it keeps me from getting more deconditioned i guess...that's the glass half full outlook!oh my...i agree with morgan...this potshole/canyon thing is an epidemic here! good grief!hugs from the other em Quote Link to comment Share on other sites More sharing options...
blackwolf Posted April 14, 2005 Report Share Posted April 14, 2005 Welcome EM,sorry to see you down here.plenty of room, i have a huge couch, an electric blanket for the chilly nites, assorted teas and coffee, decaf, of course. Merrill should be around here somewhere. if you like, and can handle, i have some leftover choclate chip pudding cookies, yumm, but i can't eat them, i'm in a low sugar zone.nite. blackwolf Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 14, 2005 Report Share Posted April 14, 2005 EarthMotherI'm so sorry that you're going through this right now. I hope that your doctor has some answers for you. I'm not sure that I know the same feeling all though my face sometimes gets really hot to touch. I wish you a cool ocean non-burning breeze to help relieve the sensation. Maybe sipping on a nice cool POTS drink Ok, dorkey sense of humor what can I say. Feel better EM Sending tea and cookies your way Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 14, 2005 Report Share Posted April 14, 2005 good mornin' Earthmother!I hope you got some restful sleep. Is there any sunshine there? Any birds chirping?How does the burning feel? Any lotion helpful? Cool compresses?I am going to try the apple oat cookie today! Thank you for that. I love oat in any form...cookies are always a hit with me... As a token of my appreciation: I am (visually) sending you a spaceflight suit so you don't burn your face on fast reentry anymore. Maybe it is time for the rocket to have a little routine maintenance?Maybe you can enter a little more slowly next time?Maybe just wear the suit and enjoy the thrill without the burn next time?Sending healing thoughts, smiles and deeper "fun" spiritual gems...with you in the journey, tearose Quote Link to comment Share on other sites More sharing options...
Gena Posted April 14, 2005 Report Share Posted April 14, 2005 Earthmother,I am so sorry to hear you're in the hole. Are you taking any good supplements like colloidal silver or vitamins to help you fight this virus?I have had a tingling, very-senstitive -to-the-touch, sensation on my cheek/jaw area a few times before, but I wouldn't really describe it as icy. It would classify mine more as annoying and a little painful.I'm going out on a limb with this theory, but perhaps due to the virus, your lymph nodes are inflamed and aggrevating some nerves in that area - or your nerves are inflamed because of the vertabrae in your neck?Have you tried some cranial massage to see if it helps?Well, I am sure it will pass in time, like so many of our strange and annoying symptoms do.It sounds like you've got plenty of comfy surroundings in the hole and lots of tea and cookies. I'm not sure what else to send you except for some healing thoughts and maybe a good book or a funny movie, Let us know if you find some relief.Gena Quote Link to comment Share on other sites More sharing options...
Merrill Posted April 14, 2005 Report Share Posted April 14, 2005 Hi, EM--how are you feeling this morning? A wee bit better? Hopefully these posts will cheer your day... they did mine! Like Horton Hears a Who ... I am Here, I am here... hiding from mice in my little corner. Join me! Can I hitch a ride on your rocket outa here?Glad your doctor's appt went pretty well yesterday ... and I hope he's right; a virus that will pass on its own. Keep up those vitamins and get some rest! And keep us posted. merrill Quote Link to comment Share on other sites More sharing options...
geneva Posted April 14, 2005 Report Share Posted April 14, 2005 Before long, we are going to need to take attendance down there in the POTS hole. I am afraid my memory is having a hard time keeping up with everyone above and below the surface (LOL). I going to add gps tracking of who's in/out of the potshole to the suggestion box in addition to the community calendar for when everyone is going in for major testing. btw, DO we have a suggestion box??? sorry, got carried away and off topic...my apologies.EM, one time in the ER the doctor called my internist and he gave the same reply your cardio. gave -- ask the patient, she knows more than all of us -- and it did make me smile to. Amazing how a little validation goes a loong way with us! Glad you had a good experience with the new doctor and think how much he learned from you yesterday.I hope your viral bug passes soon and I also hope that Tearose is making enough cookies to share! Quote Link to comment Share on other sites More sharing options...
nancyd Posted April 17, 2005 Report Share Posted April 17, 2005 Earthmother,I keep myself in the background her most of the time but I had to come out a little bit to see if you are still having your icy burning cheeks. I could write a book about the icy cold burn which has been present in me for over 8 years now. It started on one side of my face and progressed from there to both sides. There are days that I have it in my chest and worse days, in my legs and arms. It is a very unpleasant, painful feeling. Today is one of those bad days and I felt compelled to touch bases with you. Other than myself, I have never heard or seen where someone had the symptoms of the icy burning feeling in their face. Of course, I have a host of other problems , but the icy cold burn is the worst and no one understands it. My doctor used to be more interested and originally thought it was autonomic neuropathy but I guess my autonomic testing revealed central nervous problems, not peripheral which neuropathy is. My doc has tried just about every med known to man with no success - I think she's taking the nut case direction with me as well. Did your icy burn go away yet? If so, do you know what caused it or did you get a script that helped with it? The only thing I know that makes mine go away is to fall asleep and hopefully, when I wake up in the morning, it will be gone until the next time. Feel free to drop me an email if you want to compare this nasty symptom. I completely understand what you're feeling. nancy Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 17, 2005 Author Report Share Posted April 17, 2005 Dear Nancy,Thank you for popping in to share your story. It's been a week to the day since the symptoms first started, and I think this is the first day I can say with some confidence that the sensation is finally gone. No I have no clue what caused it. I was fortunate that my therapist (who has fibromyalgia and a host of other chronic immune disorders and is an RN) also has burning icy sensations. She says for her it is mostly down her arm. But that when it hits it is unbearable and that the only thing that seems to help is wrapping it with a cotton bandage. I did notice with my face, that if I placed both hands on my cheeks and pressed lightly that the pain diminished. But then when I let go (perhaps when the blood came back) the pain came back. It was truly strange indeed.Good thoughts your way on your own healing journey.EM Quote Link to comment Share on other sites More sharing options...
nancyd Posted April 17, 2005 Report Share Posted April 17, 2005 Earthmother,I will have days that I don't experience the cold burning but it always returns. I hope you have better luck that I have had - maybe you're done with it now. Heating pads give some relief but we can't be wrapped up in one of those all the time. I firmly believe this is a body chemistry (cathecolamines???) problem. I'm having tons of palpitations and also pulsating tinnitus which could imply something. I wish I had a doctor that would know what tests to pursue or be motivated to do more research about this stuff. I'm kind of at the point where I say just accept it and move on, however, when I feel like I do today, I want an answer and some relief. Oh well, glad to hear you're doing better with the burn. nancy Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted April 18, 2005 Report Share Posted April 18, 2005 EM GO GIRL offer to give lectures to the physicians about pots, you are a natural. As for the facial wind...I had that last week, sore throat...and my nose and one side of my lip on the top nummed. My pcp wanted me to go to the hospital er, but waited for hubby looked in throat etc, said probably a virus but to take antibiotic anyway. My pcp keeps me supplied, since everytime I go to the doc I end up sick, even if it was for a routine check. I AM SO SERIOUS ABOUT YOUGIVING LECTURES TO DOCS...they really need to hear it from the patient side. Miriam Quote Link to comment Share on other sites More sharing options...
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