I am loving the ideas. The panty idea is cracking me up. My husband and I ride motorcycles, or did until I started having problems with my face to find out I have TN. Motorcycle stores have a mask. It is fleece with the nose and eyes and top of your head out. It is very soft and it velcros in the back. I have one and this week it has been cold and windy here, so I have began using it to do anything outdoors. I will be wearing it tonight to take my son trick or treating. It has been so bad I have slept in it before.
That sounds like a good one to wear. My husband and I used to ride before my back fell apart, so much fun. Sorry this has interrupted your time together. My husband and I did 7 years of boating before my back truly fell apart, the best years of our marriage, the empty nest stage, sorry to say he passed away in '07.
So the panty idea is cracking you up, but believe me it worked really well because I have a vent that blows right at my bed when I want to lie down on my bed. Panties are soft cotton, don't cling tightly, kind of hard to peek out of, but it worked. I may visit one of the Harley-Davidson stores here, it is Florida but we get cold winds here when a front comes in, maybe this item is there. Is is black??
This is for Karen, not sure if those were signs of kidney failure, usually confusion is some dementia starts to present by the time you are dropping things, kidney failure can become a full blown metabolic encephalopathy, I had it, all my cognitive functions were impaired, could not speak, no gag reflex, wandering eyes, delirium. So doubtful, you get dehydrated first, and you drink but lose all the water your body needs including to the brain. If not treated promptly you can sustain permanent brain injury. I will have to look at the side effects again on tegretol, if I get tremors, that would make it hard for me to watercolor.
And you have a nice family, grandchildren will come but you have some time here raising your own. Grown children are waiting longer to have families, don't we encourage college and a degree first, marriage, buy a home and then the grandkids start coming. I got mine in my early 50's, so plenty of time to see them grow up. Granddaughters are special.
By the way, I do all my shopping on line, I can't walk distances and the amount of pain I have in my lower extremities prevents me from going to shopping centers. I can do a Target with a cart but I prefer on line shopping. The buys are great, free shipping, I get it all, good luck out there, the season is under way...Sharon
Scarves, all the time. This year I have some knitted ones for winter, but it will be my first winter with TN. already know the breeze is killer. Next car I buy will have an automatic starter. ;-)
Yes, Granny. It is black. I did get mine at the Harley Davidson store. Normally, if one has them, they all have the same stuff. I am so sorry you lost your husband. I could not imagine. Believe me honey, I am not laughing at the fact that it works. I was at the point Monday night I would have worn anything to make the pain go away. I was really worried last night about Trick or Treating with my son. I wound up making a scarf out of a tshirt. I got the idea off of pinterest. Hope you are pain free today. Hugs to all.
Bless you gals for making me laugh. I have had some great belly laughs today. Went to the chiro, laid on my face on the table and said, "this tissue is not fresh. smells like aftershave." Doc says, " oh sorry," and fetches a fresh one, but before he threw it in the trash, he took a big whiff and said, "yup, that was his aftershave." Both of us laughing was better than the adjustment.
You folks rock! Have a great day!
I wear a ski mask outside during the winter, I walk around town with the ski mask and sunglasses, occasionally a sun hat. I wave at people all the time and I'm sure they are wondering "do I know any Muslim woman." I really don't care anymore. The wind kills my eyes and my left cheek, it ends up feeling numb and aching. "Hell hath no fury like a cheek uncovered."
I like to cover my face with my hands and breathe warm breath over the cold area I get over the cheeks and jaw, right side is more affected, it helps, but I do need a nice covering for my face. I am a little odd with the cold sensation, but I do get everything on the right side just like ATN. type 2. The jolts of spasm, terrible headaches, migraine type, can't chew sometimes and it is very achy, and the spasms may it all feel tight.
Ok, some new ideas, I pull my hair gently, scratch my head, hit a few trigger points around my neck and jaw for spasm and that seems to help some, but don't want to stop. Sometimes hitting a few spots with trigger points can excite the pain and cause those jolting spasms. Gently approach this idea. I learned this technique with a P. T.
So I have that tired feeling from the tegretol, like I have been over drugged, dislike. And someone said her neck and shoulder pain got worse, starting to notice I am having achy muscles in the shoulder. I have a low dose of percocet to take, they wanted to give me morphine or oxycontin, I refused those drugs. I read somewhere percocet works best with the ache it leaves you with. It does help the feeling like I have TMJ all over again, but I know it is not that or I would have deep screw driver pain in to my ears.
Our windy cold front has passed, warming today some, I know they don't have my pool heated yet, but swimming is very good for my overall condition from all the failed back surgeries. I stretch a lot too.
Keep moving, especially if you are like me and over 50, take vitamins, multi 2 x is best, up your vitamin B, I take a B complex, B-12 for anemia, I don't eat a lot of meat or dairy, and calcium with a little sun, no D, can't take that with tegretol. Keep a healthy weight, I am not thin, just in my range, can't go over 138. I have been very heavy from prednisone.
Well my legs hurt a little bit more, I do feel some additional swelling, but I elevate all afternoon. How many of you are disabled from this condition? My disability is mostly based on the failed back surgeries, spinal cord injury and chronic pain. Now this thing, just got a 2 page review, it is tricky to answer, hope I don't have to go through a full review.
Even if you only have 1 hour of productive time some days, that is good, reflect on what you did do to make a difference in your day, not what you can't do. Never say I can't. Prayers for a few good hours out to all of you...Sharon.
hi granny, i am disabled from TN and i too like to cover my face and breath the warm air and have it go over the pain spots on my face . it helps but sometimes the smell isnt that great depending on what ive been eating. Lol. i love your attitude about focusing on the thing you were able to do instead of all the things you couldnt do. most days im able to do this. today i had a long shower and washed my hair and went to my moms and had a 2 hour-ish visit. a shower is a big event for me as i cant get water in my ears and even around them much. i have to heat the bathroom with a space heater first and have all my towels over the shower door to put over my head before i get out. i have to cover my face with a towel when i step out to not shock my face with any temp change. even the slightest change sets it off. then i have to dry my hair. at least all the hair that is close to my scalp before i go into any other room or temp change. i never used to be a high maintanace girl but now it takes me so long. my girl friend washed my hair once and dried it . what a treat. i also take percocet with 1200mg of tegretol. it does seem to help as well. swimming is a great way to exercise i found out while in florida once. the pool was really warm and i floated on 2 noodles and exercised my body. i wish i had one here. thanks for all of your positive words, we all need them. i will pray for many good hours each day for you as well. Jacqueline
We have been without internet for a week and oh how I have missed all the fun!! I needed to laugh as well as be reminded of so many things you all said. Thanks for the encouragement. Winter has hit here and will be worse before it gets better.
blessings~~
Hi Jacqueline, you are right on when you say temp change in a room is difficult to adjust to and sometimes I even find it is counter productive to keeping pain managed if I constantly cover my face. I have to come out of it eventually and adjust to the temp in my surroundings, it can excite the pain. Now cold winter weather is different with the winds, yes cover your face. Since I live in Florida, the sun feels great on my face, just 30 minutes 3 or 4 times a week, because I swim in a heated pool, I live in a modest condo, but I love the pool...I am an Aquarius, therefore have always swam, even in the Gulf.
Wow, I see the high maintenance you need, yes I love hot showers all over my body, I don't run the AC very cool, 79, used to have it at 75. I see myself using heat in Florida, my condo is downstairs and it is like a cave, it stays cool in the summers and even more so in the winters. My AC is inexpensive but heating will cost me.
I am a grandmother now, and my children only have me, there father passed away in '07, so I must endure and keep moving and find a few hours to visit, I do go to my church, and have made many single woman friends in the condo area I am in. May you have a few or more than a few good hours today. Take advantage of them, do something you enjoy.
And thank you for the feedback about using percocet with the tegretol. I have been offered stronger drugs but I don't want them, been there, don't like the side effects. I think it does help even though info on this says narcotics beware. My pain management doctor is good with me, I have a good neurologist and primary, all new docs over the past year. We need these doctors but if you are not happy with who you are with, it is sometimes difficult to change because of the in-network thing but for the most part you can shop around until you find doctors who really listen and understand. Sharon
Jacqueline Charron-Chapman said:
hi granny, i am disabled from TN and i too like to cover my face and breath the warm air and have it go over the pain spots on my face . it helps but sometimes the smell isnt that great depending on what ive been eating. Lol. i love your attitude about focusing on the thing you were able to do instead of all the things you couldnt do. most days im able to do this. today i had a long shower and washed my hair and went to my moms and had a 2 hour-ish visit. a shower is a big event for me as i cant get water in my ears and even around them much. i have to heat the bathroom with a space heater first and have all my towels over the shower door to put over my head before i get out. i have to cover my face with a towel when i step out to not shock my face with any temp change. even the slightest change sets it off. then i have to dry my hair. at least all the hair that is close to my scalp before i go into any other room or temp change. i never used to be a high maintanace girl but now it takes me so long. my girl friend washed my hair once and dried it . what a treat. i also take percocet with 1200mg of tegretol. it does seem to help as well. swimming is a great way to exercise i found out while in florida once. the pool was really warm and i floated on 2 noodles and exercised my body. i wish i had one here. thanks for all of your positive words, we all need them. i will pray for many good hours each day for you as well. Jacqueline
Hi Jacqueline, I have not needed pain meds until this year for over 3 years. This face thing is a hard thing to tolerate. Does anyone feel like a good nap or sleep breaks the cycle of severe pain? I have read many posts of several suffering from this are woken during their sleep with this pain, the actual TN. Mine is atypical TN type 2 so it has a constant feeling of discomfort however a good sleep when I first wake I am at a lower lever of discomfort. I do get spikes of pain on the right side only, like I have been slapped. It is no longer bilateral, the same on both sides.
I am glad I live in Florida, the summers are humid, but the winters are usually mild, I don't know how some of you living in colder climates deal with this. It must be very hard. Hoodies and face masks and lots of scarves. A nice warm fireplace.
I did something good today, made a lot of progress with my grandkids, I wrapped for over 5 hours, I am picky and it takes me a long time to do anything anyway. I don't know how I knew this thing was coming, but I did all my shopping early on line and now I am almost 70% done for Xmas. Maybe anxiety is mixed in with this pain, it does make you feel like tearing your head off and placing it on the bedside table so you can rest. I wanted to paint some today, but this is it for me, I have to start elevating my legs. May you all find some peace today, even if I don't I want someone to feel better. Sharon
Granny said:
Hi Jacqueline, you are right on when you say temp change in a room is difficult to adjust to and sometimes I even find it is counter productive to keeping pain managed if I constantly cover my face. I have to come out of it eventually and adjust to the temp in my surroundings, it can excite the pain. Now cold winter weather is different with the winds, yes cover your face. Since I live in Florida, the sun feels great on my face, just 30 minutes 3 or 4 times a week, because I swim in a heated pool, I live in a modest condo, but I love the pool...I am an Aquarius, therefore have always swam, even in the Gulf.
Wow, I see the high maintenance you need, yes I love hot showers all over my body, I don't run the AC very cool, 79, used to have it at 75. I see myself using heat in Florida, my condo is downstairs and it is like a cave, it stays cool in the summers and even more so in the winters. My AC is inexpensive but heating will cost me.
I am a grandmother now, and my children only have me, there father passed away in '07, so I must endure and keep moving and find a few hours to visit, I do go to my church, and have made many single woman friends in the condo area I am in. May you have a few or more than a few good hours today. Take advantage of them, do something you enjoy.
And thank you for the feedback about using percocet with the tegretol. I have been offered stronger drugs but I don't want them, been there, don't like the side effects. I think it does help even though info on this says narcotics beware. My pain management doctor is good with me, I have a good neurologist and primary, all new docs over the past year. We need these doctors but if you are not happy with who you are with, it is sometimes difficult to change because of the in-network thing but for the most part you can shop around until you find doctors who really listen and understand. Sharon
Jacqueline Charron-Chapman said:hi granny, i am disabled from TN and i too like to cover my face and breath the warm air and have it go over the pain spots on my face . it helps but sometimes the smell isnt that great depending on what ive been eating. Lol. i love your attitude about focusing on the thing you were able to do instead of all the things you couldnt do. most days im able to do this. today i had a long shower and washed my hair and went to my moms and had a 2 hour-ish visit. a shower is a big event for me as i cant get water in my ears and even around them much. i have to heat the bathroom with a space heater first and have all my towels over the shower door to put over my head before i get out. i have to cover my face with a towel when i step out to not shock my face with any temp change. even the slightest change sets it off. then i have to dry my hair. at least all the hair that is close to my scalp before i go into any other room or temp change. i never used to be a high maintanace girl but now it takes me so long. my girl friend washed my hair once and dried it . what a treat. i also take percocet with 1200mg of tegretol. it does seem to help as well. swimming is a great way to exercise i found out while in florida once. the pool was really warm and i floated on 2 noodles and exercised my body. i wish i had one here. thanks for all of your positive words, we all need them. i will pray for many good hours each day for you as well. Jacqueline
Granny, I get the worst and ost of my attacks while sleeping. It wakes me up out of a dead sleep. I get 5-6 attacks per hour. They usually last 5-10 minutes each. I actually hate going to sleep. If I lay on my right side it puts pressure on my left side that sends me into an attack. If I lay on my left side that is affected it hurts so bad. If I lay on my back it puts pressure on the back of my head and I get a numbing aching feeling in the back of my head. During the day, I have the numb, tingling, burning feeling. I finally just got referred to a neurologist. I go on Tuesday. I pray they can get this in remission.
JLT, have you ever tried sleeping in a recliner, and if so.. does that help at all??
Hello JLT, boy I am so sorry this thing interrupts your sleep. I have to sleep with my legs elevated on pillows so I guess that is something like a recliner in bed. I also get a numb tingling sensation at the back of my head especially if I rest on pillow a certain way it gets going and it feels weird. My doctors are not paying any attention to this but tomorrow when I see my neurologist I am asking for some scans to rule out the worst. I also hope you get some remission, your type qualifies for surgery if meds do not work. Mine does not always get a recommendation for surgery and sometimes surgery can make the pain worse. Good luck, they will probably try tegretol first, I am on that now in slow elevating doses. Percocet seems to work best for the pain, someone else has blogged this on this site. I have not taken narcotics for over 3 years since my back stablized but this thing is a monster, the pain med does help me rest better. Sharon
Min said:
JLT, have you ever tried sleeping in a recliner, and if so.. does that help at all??