My body will explode
I crashed badly 3 days ago. All the, or maybe some, are worse. Burning mouth horrendous, POTS symptoms very severe. Never can sleep in day but must lie down 5-6 hours a day. GET THIS: most of the time cannot sit for longer than 10 min, cannot stand, cannot lie down/recline head--all give me feelings of MY BODY AND HEAD HEAT EXPLODING!!
Heat attacks feel like a wave of nausea and lightening strike, often 5 per hour.
Also, severe heart palpitations, tremors and shaking, body vibrating -- even a small snack makes it worse- always for 20 minutes while digesting.
I carry freezer head bands, water spritz bottles and a lightweight fan from room to room. Talking to my husband makes it worse, answering the phone, standing in the kitchen, most cognitive task of any kind.
I have to interrupt alot of things that I do, but it is so hard to move -- so it's a miracle I haven't had panic attacks. Have developed an anxiety disorder and PTSD from it.
I also feel like I'm on the verge of all out rage, most of the time. I attended a mental health support group for about 5 months on and off, it helped a bit.
Sorry to bring such bad news. My spiritual life has kept me going and husband and going out and friends I see sometimes, but it is unbearable suffering when it is bad. Especially when you can only sleep 7 hours and NEVER in the day-but are trapped in your body for 5-7 hrs.
Just needed to vent. Thx to all my DS friends- we share our moods and burdens. I am not a fan of advice- however on a better day, I feel positive about all the ways I cope.
All the best to you.
Heat attacks feel like a wave of nausea and lightening strike, often 5 per hour.
Also, severe heart palpitations, tremors and shaking, body vibrating -- even a small snack makes it worse- always for 20 minutes while digesting.
I carry freezer head bands, water spritz bottles and a lightweight fan from room to room. Talking to my husband makes it worse, answering the phone, standing in the kitchen, most cognitive task of any kind.
I have to interrupt alot of things that I do, but it is so hard to move -- so it's a miracle I haven't had panic attacks. Have developed an anxiety disorder and PTSD from it.
I also feel like I'm on the verge of all out rage, most of the time. I attended a mental health support group for about 5 months on and off, it helped a bit.
Sorry to bring such bad news. My spiritual life has kept me going and husband and going out and friends I see sometimes, but it is unbearable suffering when it is bad. Especially when you can only sleep 7 hours and NEVER in the day-but are trapped in your body for 5-7 hrs.
Just needed to vent. Thx to all my DS friends- we share our moods and burdens. I am not a fan of advice- however on a better day, I feel positive about all the ways I cope.
All the best to you.
Replies
So sorry for you pouty.Those heat attacks sure sound like a severe hormonal problem.I have some of the same symptoms as you but not those terrible heat attacks or burning mouth.I wonder what causes the burning mouth. Do you know anyone else with this? The tremors and shaking are very familiar to me and also the palpitations.I can never sleep during the day either.I wish I had some way of helping.All you can do is rest and try and stay calm.You poor darling, it\'s so much to cope with.Thank goodness you have your husband.Hang in there, hugs.xo
Vent away....how frustrating to not be able to sleep when you need it so badly. Is this what causes your burning mouth? Sounds like nerves gone awry, like with interstitial cystitis...how painful, hope the doc is able to help with some kind of treatment.. http://www.nidcr.nih.gov/oralhealth/Topics/Burning/BurningMouthSyndrome.htm
Oh, my gosh. I have POTS too, as you know, but this crash sounds like the worst I\'ve heard of. I\'ve crashed badly, but this seems totally off the charts. I am so sorry to hear that you are feeling so ill. It\'s so hard to not be able to sleep. I sleep very little on a regular basis. It is such a strain on my health to not sleep. I have no advice on how to sleep because I haven\'t figured it out yet. I know you must be absolutely at the end of yourself. Rest and try to meditate, although your current state would probably make that quite difficult. I\'m just hoping you can find a moment of peace when the divine breaks through and you know you are loved. Much love and many blessings. I will pray that you will be released from this suffering.
Thanks to all for your support. Burning mouth syndrome affects menopausal women the most, however,others too. I don\'t search for remedies ,etc. anymore. There are no specialists-- and 20 yrs of $ and trouble- enough for me. I still use topical stuff on my mouth. Generally gives 1-5 min of relief. As I\'ve told my friends and naturopaths for years, there is no cure, I take stuff to psychologically feel like I\'m trying. (Oral-topical: tea tree oil, oregano oil, alum, licorice lozenges, drug store rinses, radishes, green onions, wet raw vegetables)Just got an email from my techy friend, to up my B12- yada,yada,shoot me now!)
There are ample sites for burning mouth syndrome-everyone is miserable. IT IS NEUROLOGICAL. I have major burning skin, almost all over, but intense on upper body. Many PWC\'s experience stinging skin, pins and needles,etc I have straight burning - you could fry an egg on it. Cool water is the only relief or cool head pad.
For about 5 years I have been on natural compounded hormone cream- Trieste and progesterone. Is damn expensive and has to be filled by a special pharmacy. IT DOES NOTHING, but I keep doing it BECAUSE I AM SCARED SHITLESS TO NOT TAKE ANYTHING !
Yes, we all have our unique journey. Thx for your empathy- it means a lot. I generally do not look for new remedies, but I respect that others may find something. Because I have accepted that my condition will not improve ( about 10 years ago) I have tried my best to put my energy into taking writing and theatre classes-- it keeps me going. I consider myself a muscician (sp?) now, as my \"retired\" career.(lol)
I believe the angels have guided me and although my theatre group is too large and noisy for me now, I have used an ipad for 2 years and written a lot of articles and songs, which I never thought I could do.
So the community arts community has taught me a lot. My main problem is that I like people contact and slows down my creative time. We are all a work in progress, and I pray that all my DS friends stay connected to their unique calling through all these terrible trials.
I am sorry I am so late to this journal, Pouty! I have not forgotten you. My life is a bit of a mess through my husband\'s illness right now and I don\'t get here very often.
You are really suffering with all these neurological problems and it looks like you have done all the things you can to help yourself.
We are one big bundle of nerve fibers gone wrong. All the pain signals get sent in every direction. Our brains don\'t seem to understand what they\'re doing. Basically, we\'re broke!! Our neurons send wrong messages to our bodies, we are constantly inflammed and in some kind of discomfort. I\'m so sorry you are doing through this.
You are right about us PWC\'s and the struggles we face. You are a brave woman. Hang in there. Treat what you can, when you can. We have to push through all this stuff. We have no choice about that. But we do have each other to share with and we\'re always here to listen.
I do pray (right now) that you will get relief from these horrible symptoms! XO