hilbiligrl

Oh, i've also added olive leaf to my supplements too. Especially since that recent hospital stay with the infection and the swollen face with the abscess in the jaw bone........

I'm a believer in olive leaf. When I start to feel sick - I'll up mine and take it several times a day - otherwise, I take one a day as a sort of preventative.

Issie

awesome on the olive leaf!!! i bought mine from swanson vitiamins online, which is where i buy all my supplements. But i didn't think to take it more than once a day because it says its super strength i think...... i think i could have read it from you or RKT here, or someone on here about it..... so i looked it up and ordered it immediately..... ive only been on it for 2 straight weeks since getting out of the hospital...... so im not sure how i will know if it's working

I'm trying the maca - haven't noticed to much with it- yet, but just started. I don't recall Jesus saying that the mustard seed was the greatest herb - but, he did say if we have faith the size of a mustard seed we could do amazing things. I'm also a spiritual person and find that it really helps me a whole lot in dealing with this illness. Interesting find - be interested to see what "the tool" Rama can come up with. LOL Actually, I believe Rama is so much more than that! But, our southern, terminology lets ME know what you meant but, I'm not sure people who aren't southern understand it. You know I'm from the south too - right?

Tramadol has been my best POTS med - so far. But, have to really be careful with it and come off it occasionally or it will quit working. I refuse to get addicted to anything and so I take very small amounts and cycle it.

Issie

I had no idea you were from the south!!! That is so neat! Yea, tool..... that's our word for 'asset'.... he he. Lol @ us southerners.... apparently i have a pretty thick southern accent as well! Yea, i really was hoping maca would help for the severe exhaustion from nothing.... but it doesn't seem to have much benefit really and i've been taking it for about a year......

and yes, the tramadol helps me so much, but i find it only helps in about a 100 mg twice a day dose..... but, like you said, i have to be careful because i would develop tolerance and it can be addictive. Once i felt i was feeling addicted to lunesta, i decided i was done with it, plus after being on it a year...... i just felt inside it was doing more damage really. Glad i kicked it many months ago and i can sleep pretty good now (not every night, but sleeping better nonetheless) with only klonopin and the ashwaghanda..... every now and again i might have to take trazodone but when i do, i sleep hard and wake up with a massive headache, ugh. Plus i find when i take it, i don't dream and im really into trying to remember my dreams to help with my spiritual insight, and to work on interpreting them for the benefit of my body and mind.

and yes, i have only gotten into seeking and searching my spiritual side these past 6 mths and well, i've actually gotten somewhere..... and im so astonished and totally amazed, so im really diggin in and trying harder at it, as you are so correct..... it helps so much! and well, since my doc is a mind, body, spirit doc...... well, i just had to really try to get into meditation, etc...... because i knew i needed to work on me.....

amazing that tramadol gives us energy as well as takes away the aches and pains and my headaches that i have everyday..... but yea, i have to stop taking it a week or 2, or i just dont feel it working.......

Oh, i've also added olive leaf to my supplements too. Especially since that recent hospital stay with the infection and the swollen face with the abscess in the jaw bone........

well... he he he... lol, i was trying to reply to your reply on the other thread where i asked you about it..... i just read it and this was what i was going to say

"ahhhh.... ok, i see that is def something i will be working on in myself...... any tidbit of info, i grab onto it... lol. Because, even though im changing my diet, i haven't yet accomplished it as well as i wish too. I'm not overweight, but im pretty sure i would fall in the acidic range.... i've been looking up the alkaline foods and diet and am looking up recipes so that i can encorporate this way of eating..... thanks for mentioning it!!!"

so.... i've been looking up on it and im going to print out some recipes and start gearing my diet towards this and try to obtain that balance

Issie~ yes i've been taking the maca for quiet a while..... that one, im using for energy..... and although i do notice a slight difference when im taking it and when im not.... im not seeing a huge difference and haven't...... im still looking for something for energy.... as it seems only tramadol but in a higher dose is the only thing on earth i have found to give me energy..... but, going there with a doc... well, im just not ready yet. So, i have no made any conclusions on the maca as far as benefiting greatly from it.... i have however, greatly benefited from ashwaghanda. Others may not, but it really has helped in the dealing with stress area, and it teamed up with klonopin, makes me feel as if i never need to up that dose in klonopin, which is great, cuz i don't want to develop tolerances and we all know we are great tolerance developers.... lol.

The reason i came about the mustard seed is since im currently in a downfall, or potshole..... and have been for so long now.... i've also been real into mediation, dream recall, spiritual journey and enlightenment. (not to be confused with religion.... but honestly, im just trying to find my relationship with God and seeking him out as well as knowledge.... and other things that are helpful with my journey, etc.....) but i remembered jesus saying that the mustard seed was the greatest of all herbs.... so i started looking it up and it's benefits and to my astonishment, there isn't much on it!!! so what the heck, im going to add it to my regimen and see how it goes

and RKT~ if you find out anything please let me know i would be so grateful!!!

oh and issie, is it you who is on the alkaline diet?

issie:

it's the marijuana pill, doctor prescribed, although i think its chemically synthesized thc basically. It helps with my crippling nausea that nothing seems to touch, vomiting, headache and basically an overall calming, or suppressing of most of my symptoms. It really helps through the really bad 'i can't cope anymore' patches. And it seems it helps for my sleep too.

Not sure if there is a difference between blood alkalinity and ph of of body. But, I'm always alkaline when I check with litmus paper. But, I also have higher bp's. I think it is important to keep the body more alkaline for many reasons. One being - cancer can't live in an alkaline environment but thrives in an acidic one.

Issie

issie:

how much would you think being alkaline affects the dysautonomia, and other things? Even with diet changes i think im still acidic. How do you test it? i honestly never realized the importance of this..... thanks for the info

I'm so glad someone posted this as i just honestly thought this one was i was alone in. I too seem to have to have higher doses of pain meds, morphine does nothing for me either, in addition im the same way regarding sleeping meds... nothing, not even higher doses and doubled up with something else, does not even touch any help at getting to sleep, which is aggravating yet scary as well.

In my recent stay at the hospital, when my face swelled up in just a few short hours, then doubled in size, plus my neck..... had so much pain i never thought existed on such a severe and intense level.... only dilaudid would help through the iv and then it didn't seem to last but a short time and i would sit rocking back and forth just gritting and bearing my way through alot of if, but compared to the severity before it, i was very thankful that the pain level just decreased enough. I had never had dilaudid before this. And now, just a couple of weeks out of the hospital i cannot remember that pain, but i know how severe, intense and over the edge it was.... i just never knew pain on that scale could exist.... ever..... I mourned for pain suffers.... But now i cannot remember it (the pain, specifically) .... i don't know if it was just so traumatic that i've pushed it out of my mind or it's the short term memory, or if that's natural.

but i have a high tolerance for pain as well.... so when i mention it, by that time it's prob been way over a few months due of mentioning..... i try not to go there.

glad to see im not the only one.... but its not easy, i hate to know that others go through it at the same time

I had dahl two nights ago with mustard seeds and curry leaf and felt quite good afterwards. Didnt really think of it until now- both black/brown and white mustard seeds fried.

Also nutmeg works in a similar way to Mestinon as does a herb called Lactuca virosa and Ginko bipola.

Hi RKT:

I love reading your posts and insight..... you are a valuable tool on here...... the whole time, i just knew you would key in on this one. Well, ive been reading up on it, which there doesn't seem to be much out there to read up on. However, i purchase all my supplements from Swanson Vitamins online cuz they are sooooooo much cheaper than the food stores around here and after using them for a year, they are great quality. They have a bottle of mustard seed for a few bucks, and im pretty sure im going to try it and add it to my supplements and see how it goes. It seems to have sooooo many beneficial properties..... i'll be ordering mine this week. I guess we shall see......

i tried mestinon for 3 mths and just couldnt hack the side effects...... it was funny, cuz my doc wanted me to try marinol first before the mestinon, but i wanted to try the mestinon first...... and he let me...... then once we found out the mestinon was making me worse in many ways.... we stopped it and started on the marinol which has been very beneficial.

thanks so much for being on here... you are an asset!!!

Information is hard to find on the mustard seed, but what i have found seems pretty neat. I'm considering buying some and trying it on a test run....... after talking with my doctor.

anyone know anything, tried it, considered it, looked it up?

thanks

im like this everyday..... exactly everything..... loss of words, common ones, slurred speech, stumble for words, stuttering, difficult to complete a sentence, paragraph or carry on conversations while this happens consistently. My writing is difficult, as if the motor skills needed are damaged or hindered somehow, because it is even hard to grip a pen and has been for a good 9 years.

I went from a huge, expanded vocabulary, straight A student in college to a small vocab, difficult word recall, sputtering through words and sentences like a 5 year old. I have never felt so humiliated in all my life. I use to speak so articulately and it flowed. Oh how i miss that......

yep, count me in

Thank you so very much Bren Im sooooo glad it is over and crossing my fingers that like it doesnt come back or anything like that. Shew.....

Oh and since all this happened, my bottom lip, from the lip to the chin, lets say from the middle of it to the end of my smile and few inches past, plus all the way to the bottom of my chin, and my teeth in that same area and the gums in the same area...... all of it has been numb as if a dentist numbed it with a needle/novicane or something. It's been numb for a good week and still is.... of course i still have some swelling left in the jaw line. But it's so numb that when i eat, food comes out and i have no idea of it cuz i can't feel a thing!!!! It's as if nothing is there, no teeth, no lip, no chin..... its so weird. :/

issie ~ oh how i do feel so very fortunate. Im so sorry about your uncle. Im serious, i totally do feel very lucky. Even if I had to go through all that. It's just something inside me tells me it just was meant to happen this way, in order for the infection to be known and treated and the tooth to be pulled. It was clearly already causing sepsis and oh my, at such a quick rate, and yes you are so correct, and i know, it would have been deadly and very quickly at that. And I know, im not over-reacting, it's just something i know deep down. But boy did we have to fight to get something done!!!!

futurehope~ that is an excellent explanation!!!! I never would have thought that in a million years!!! But it makes perfect sense. And im so sorry you have had to endure the same thing too. Thank you for sharing that, because i've been scratching my head and all puzzled for days.

Tenille,

Good gosh!!! I have a dentist phobia and your story made me have adrenaline surges! You poor thing...this past week must have been horrible. BUT, it sounds like better days are ahead (plus you got some happy gas!) I was wondering if you were ok cause I hadn't seen you post for a little while. There must have been some sort of nasty bug that got in there during your filling change...it could have been from a tiny little prick of your gum from an instrument...who knows? Plus, weren't you on a round of prednisone just before your pain got bad? Maybe there was an underlying problem and the prednisone suppressed your immune system enough to let it go into a full blown infection?

Continue to get well. I'll be thinking of you.

Katie

Katie

Thank you so much for thinking of me Yea, i was pondering the same thing, like maybe something fell into the tooth when they replaced the filling. Keep in mind, the dentist who done that redo on the filling was a..... well, like a resident dentist, wet behind the ears. I had not dental insurance, so we have a local organization that provides quality health and dental to those who work but don't have insurance. Honestly, every tooth he filled, all never have felt right. But that one specifically, i knew that same day he done it, that something about it wasn't right. Maybe they didn't clean it out good enough and left some 'bad stuff' in there and then he packed in the porcelain filling??

But yea, i took a 2 week round of prednisone, which quietened everything about me down. The jaw didn't hurt, the tooth didn't hurt, my overall symptoms were suppressed, i felt pretty good for those 2 weeks.... then afterwards, after i stopped them.... BAM.... all this happened. Im thinking the same.... maybe it suppressed everything, then after i got off the prednisone it all came back like tenfold and then this happened as a result??? But im also thinking, perhaps this infection has bee accumulating the whole time since the replaced filling and after the prednisone, it was able to really show itself and just, like, multiply?

I have deep feeling within me, it was meant to happen this way. No telling what the future could have been if the infection lingered in there on and on..... i do feel better in many ways right now, than i have in quiet a few years. But Im not sure if that's because the infection is healing, or if it's the opiate (percocet)... which i have only taken 2 today. I know percocets can make me feel better........ but, i guess, in the long run.... by the end of next week, surely i'll know somehow if im feeling better that perhaps the infection has worsened my symptoms these past 9 months?? I actually feel normal, for some reason... .i don't know why. I mean, i feel tired, wore out.... but i dont feel all my symptoms that i always deal with on a daily basis..... and i can't figure that one out right now. Hmmmm..... theories, theories....

thanks so much again for thinking of me and yes, im so glad im feeling better and feeling like im on the mend

Thank you, both of you It was quiet the experience. While i was taking that prednisone weeks back... i had 2 good weeks that i had never had before. My mind and body was quiet for almost 2 weeks. I can't explain that exactly, but seriously, my mind quietened and my body completely calmed down to a quiet state. I was then able to finally accomplish meditation, deep breathing, getting control of anxiety, focusing on positive energy, etc...... I really had gotten somewhere in the mind body connection. (although im no where near mastering it) but by being able to accomplish that for a good week or so, i think it helped me through all of this. For some reason i didn't totally flip out or fall apart. Not sure why.... but it was a very weird experience and of course it was very traumatic. Even my doctor agreed it was quiet traumatic (we converse and keep up through facebook).

The dilaudid was a live saver, they of course, would give it through the iv.... and it was great for the pain and never knocked me out or made me dizzy or loopy or anything.... just took the pain away for a while.

And yea, mom is like me, we demand answers and we demand not to be swept under the rug and sent home just because they dont know what to do. I honestly believe if they sent me home, I would not be alive.... i feel with all my hear the infection would have spread really quickly and sepsis would have taken over, as one doc said that is what it was doing. So, im so glad my mom fought for me the entire time..... i seriously just had no fight, no anything... i was that plum wore out and that much in pain.... wow, i was just delirious.

The nurses where amazing though. I can't be thankful enough for them.

I have no clue myself.... but wanted to say, i love your new picture. I have seriously been practicing meditation, positive living/thinking, yin yoga, etc...... Im really getting into the mind body connection and truly want to understand it..... and your picture reminds me of just what im trying to accomplish and master

~tennille~

Hey yall, ok... this is a long story, but it is a weird one..... so hang tight with me.....

So... my tmj. It had been acting up for a few months up to the point that I stayed in serious pain for a couple of weeks, to the point i was walking the floors, pacing back and forth, holding a cold pack on my jaw, crying, moaning..... no sleep.... went on for 2 weeks, maybe more. I had been having issues for a few months, but it dramatically got worse, these past 2 weeks specifically.

Finally, 1 trip to er for the severe pain (and i never go to the er for pain, ever)..... I was given morphine, it didn't do anything for the pain. Was sent home still crying in pain. The next day, doc appt with DO doc, went well, but pain was back by 11 that night, called her back the next day crying in pain (and folks, i dont cry... i just. dont. cry..... so this was serious pain), after a second trip to the er for the pain. Another morphine shot, did nothing, was sent right back home stil in severe pain. Back to DO doc after that night at er. Prescribed percocet and flexeril, and we decided it was best not to do anything more on manipulating the jaw, etc and try to let things 'calm'. Got home, took the perc, felt a tad better finally. Got an hour or so of sleep that night, again, walked floors, pain, crying, and the percs were not even affecting to the point, i think i was over taking them.... but i was very delerious in pain, very very delierious in pain, constant pain, neverending pain. ***I have never, ever in my whole life, ever experienced pain on that level, nor ever though it existed on such a severe level.... so i was totally floored*** As morning came, i happened to glance in the mirror and go the shock of a lifetime.... my jaw and that side of the face was swollen so big that i was unrecognizable. I was running fever, that side of face was hot to the touch, pain was unreal.... started vomiting profusely for hours..... cried for hours, moaned, even screamed some..... by 3 pm, my face was double the size and i could not keep any percocet down at all the whole day.... pain unreal.... called my mom and told her everything and i said 'something is bad wrong.... bad wrong'..... mom was picking up the kids but was here to get me to the er for the 3rd time within mins.

Ok.... er. Thankfully i had the same er doc, who had seen me the first 2 times. I was laying on the swollen side when she walked in and she was like oh no, still in pain? I was crying, moaning, and rocking back and forth. I could not talk. My face, neck, bottom lip was so huge, so swollen that my lip was literally splitting into in places..... and, the inside of my mouth, under the toungue was so swollen that my tongue was forced to roll to the unswollen side.... even the inside of my cheek/gums where swollen times like 10. (I have pics.... man i wish i could share them on here so you could see). Anyhow.... that lovely pretty doc was like, 'still in pain huh?'..... then i turned around and she seen the face and she literally bout dropped her clipboard and said 'oh my god' as if she had never seen anything like it. She was like..... ok, we have GOT to find out what's going on here. This time, she gave me dilaudid, through an iv they started and were also giving me fluids and phenergan because i was severely dehydrated because all i could do was vomit.

Ok.... so, she and a doc from my primary doc's practice decided regardless of not really knowing what was causing this, they realized, i had a fever, my jaw was hot.... and everything else.... so they started i bag of iv antibiotics. And then..... they were going to release me with a script for antibiotics and send me home.... even though i was still in severe pain (the dilaudid only would last 2-3 hours at most)..... my mom raised cain, BIG TIME. I could not talk, I had no fight, i had no will left in me, i was tired, pain.... i just had nothing left in me.... so my mom was my advocate and she fought hard. She said she wasn't taking me anywhere and that they better get a doc in there to admit me and keep me and find out what's wrong and treat me. Good job mom..... cuz they admitted me. However, during the admitting process, i get to a room and they change my iv antibiotics to by mouth.... my mouth was SO SWOLLEN that i could not swallow, not even water. We were both mad as you could imagine. It was about 12 am when i finally got to my room and i happened to get up a couple hours later to pee and i happened to rub my inside of my gum cuz i seen a puss pocket at the base of a tooth, i pushed on it and puss came out.... i immediately got mom in there and showed her.... we called the nurse... the nurse called the doc at like 3 am and the doc was like, ok, give her such and such antibiotic pill form.... ?????????? so i left it at that.... took it.... pill form.... took it again the morning dose while still at hospital.... seen many docs... no one knew what was going on..... mri with contrast dye did not show any abscess at all, so everyone was scratching their head. They kept saying they would get an oral surgeon in to look at my jaw.... we all truly still yet, kept thinking the tmj was causing all this..... even i thought that too.

So, im well into the day and my mom was rreally (in a respectful and nice way) she really let the doctor on call have it for a good hour. I was still making no progress, fever going up, swelling getting bigger and bigger..... even the nurse was really scared and shared that with the doc herself, because now, my neck was so swollen that it was quiet scary. So... another doc from my office came in around 3 and she took ONE LOOK AT ME THE MOMENT SHE SAW ME and said 'that is not tmj.... that, is an infection and a bad one at that'..... it was in my blood stream because my skin was red and it was traveling/spreading down my neck, down my chest and you could see a difinitive line of it.... it was scary..... So... this awesome doc, put me back on mega iv antibiotics and she told nurses "do not take her off of it the whole time she's here." Sigh, finally..... someone who is getting somewhere. (That day alone, i had over 12 doctors to come in and see my face, they all kept saying, 'yea, we've all been discussing this together'.... no kidding.... (of course one was my pyschologist and she had heard about my face and wanted to make sure i was ok, which was so sweet that she came and talked with me a bit....and another one was my DO doc herself, she was so worried too and felt so responsible and cried when she saw me.... i do have some amazing doctors really, i felt so very loved by them.... and since my primary care doc couldn't be there, he sent them since i had ongoing relastionship with them as a doc/patient and they knew me pretty good by now).....

Oh, and also, going into that day, the early morning male doc, came in and took me off the dilaudid and put me on pill form percocet and morphine.... WHICH DONE NOTHING BECAUSE I COULD NOT SWALLOW.....plus, i would get chocked cuz my mouth was so swollen i could not swallow.... DUH!!! i was furious.... so when this good doc came in at 3 and said that is a bad infection and put me on the iv antibiotics for good, she was pretty upset that they took me off of the dilaudid and she put me back on it to where i could have it every 3 hours and i could also have a percocet every 6 hours.... that was a perfect combination for me and with that, i was able to make it the whole stay and be for the most part comfortable. (keep in mind, i had never had dilaudid until this hospital stay)

Now comes another mind blowing part. Day 3 in hospital..... the docs kept saying they would get an oral surgeon to come in and look at me. Well, that just could not be done. So an ear, nose and throat specialist came in.... he happened to be the one who took my tonsils out about 7 years ago, but he didn't remember me of course. Now.... all of this happened in less than 5 mins..... he looked in my mouth at my gums, which where mushy and you could tell there was puss in them.... he hands me a qtip swab with numbing stuff on it and said 'go rub this on your gums'.... and i was like 'um... ok'..... so i did. Then he said sit down on the end of the bed. I did. Then he gave me one shot in my gums to numb, BUT he IMMEDIATELY grabbed a scalpel and DID NOT let the gum numb AT ALL PEOPLE!!! He said open your mouth.... (i was like, WAIT?????? IM NOT NUMB!!!!) and then, there he went!!!! He sliced and diced my gum open with me shacking uncontrollably, with tears rolling down my face and i could feel the crunching of my gums..... AND THEN he took the scalpel and DUG very hard a hole in my gums to where the puss could drain. He handled my face and jaw so rough that it was unreal. Then he left.... all in under 5 mins....... I literally sat there, rocking back and forth while blood was pouring from my mouth on the bed and my body, head, teeth, arms, legs, everything was shaking like i was convulsing uncontrollably..... all i could do was stare straight ahead, let the tears flow, and shake uncontrollably.... i was in that much shock. The nurse came in and mom came in and they saw me like that and almost cried. They petted me, rubbed my back..... but i was seriously in shock for about 20 mins, i could not calm down, i could not stop shaking with the tremors, i could not respond...... it was aweful.

Finally, after that.... things got a bit better. My face started to go down and i was responding to the antibiotics. After 4 days in the hospital, my face was down considerably and my pain was more in control with just percocet. I asked to stay one more day to make sure the infection had not spread any further and since my chest still has a line going across it where you literally could see the infection traveling.... they agreed it would be the smartest thing to do to keep me over and still on iv antibiotics. So they did..... I done well, improved more and was released the next day.

Now, the day after i get in to see the oral surgeon. He xrays my mouth. Finds an abscess under one of my molars that had no rotting or cavity, it was a good tooth, but under it was trapped in infection/abscess. His solution? Pull it. I cried. It was a good tooth. Plus, i had been through so much trauma that i was just, i just couldn't take no more. And when it comes to my teeth, i can't stand for them to be messed with, especially one pulled.... id rather give birth to babies than have a tooth pulled. So, i had to make a quick decision and say yes, but i told him.... look, ive been through so many traumatic experiences this past week that i just cant handle this... i need something for my nerves. He suggested the happy gas and i was like ok. I wish i had known about the happy gas before now, because that stuff works miracles. After 1 min of breathing it in, i was like, BRING IT ON BABY!!!!! lol...... so he pulls the tooth and i beg to keep it, cuz its a good tooth and all. And in the hole the tooth came out of was white cottage cheese looking puss and i could also see bone too.... so that was down in my bone..... wow. How on earth does that happen????

So.... the tooth was pulled on tuesday.... im resting at home, feeling so much better. Im wore out to the gills but i feel so much better. My TMJ has calmed down too and only aches every now and again.

So.... on this tooth.... in my middle school years, i had this tooth filled with a mercury filling.... 9 mths ago, i had the mercury filling taken out and a porcelain??? filling put in there. Ever since that happened, i had pain from that specific tooth and for 9 mths i have not been able to eat on that side of the mouth and that tooth was so super sensitive.... yet, there is no indication of any decaying, etc on it. So, any theories on that????

Anyways.... that's my story..... if i had a way of posting the pics of my face and how unreal it looked i would so love to share them. Basically, docs were scratching their heads because they would look at my teeth and they all looked perfect, so then i guess they though the tmj was the whole problem..... so did I. I would have never thought i had an abscess held in by a tooth but not caused by the tooth???? Weird.

thanks for putting up with my story, but i wanted to share it....

lots of love

tennille

hey you guys....

issie~ i am so NOT wanting to do any surgery..... unless it is direly out of the question necessary. Im with you, i think once the jaw settles, it will feel back to normal again. I seriously do not want any surgery at this time, or for a long time. For some reason on the right side of my body, is where the joints will take turns 'acting up' for a year. in 2008-2009 it was my knee.... i could barely walk, and had to get my knee drained very often..... after about a year of that (that was while i was in college walking 20mins up and down steep hills to class 6 times a day (my knee started up after a boy ran over me and mostly my leg and that knee. After the right knee settled (which took well over a year, and i had already had previous issues with the knee anyways) but after it settled, then my right hip hurt for a good year.... now it's my right jaw..... seems to be an attack at individual joints in my body, taking turns every year??

So, yes, i need to get some answers on the EDS. I have an appt with an oral surgeon in 2 weeks. Do you guys know how i would be tested for EDS? My doc and I have discussed it and we both suspect i def have it. If i do have it, how does one treat it anyways?

thankful ~ I have wondered the same thing, many times...... but my last visits with my dentist was about 6 mths ago.... and basically we had worked on several teeth for about 4 weeks, getting them all filled, etc. I did notice though that after my teethwork and a few fillings that every tooth he worked on, hurt everyday, were super sensitive..... still are. Not sure if that goes along with EDS or what though.... But, the DO doc did check all my teeth when i was able to open my mouth wide on monday and all my teeth look great and all. No signs of infection in the gums, teeth or anything......

With the pain meds and muscle relaxers today, i have been able to rest and breath and calm down. The pain meds and muscle relaxers don't work 100%, but they sure have helped decrease the pain severity to a level that i can 'deal' with for the most part.

Oh wow, did i still need some sleep.... but i haven't been able to sleep yet.... every time i lay down, the pain gets worse..... which is why i have been sleeping propped up like in a recliner.

Im hoping to get back on here asap and answer anything i have missed. But for now.... im sighing a sigh of pain relief and being ever so grateful for the relief.... and continuously being thankful just to feel better again......

ok.... im gonna nap a bit more.... since i have had virtually no sleep since last thursday (which is another reason i have no drove since it all started bad a week ago.... too sleepy, and the pain would occasionally cause me to black out here and there.... so i've not driven in over a week now)......

ok, im literally falling asleep as i write! so i better go..... i'll let you all know how tonight and tomorrow go.....

and again thank you ladies!!!!

oh wait just a sec: for those of you who got a mouthpiece for tmj..... when i have the mouthpiece in, my jaw begins to hurt pretty bad.... is this normal?? or should I stop using it if the pain doesn't lessen?? I know of you guys/gals said that it was best to get it special made from the oral surgeon..... but my DO doc insisted that i get one from like walgreens anyways and use it till i see the oral surgeon. I bought of the most expensive ones that the pharmacist recommended. But when it's in, the jaw hurts pretty bad.... when i take it out, the pain quits after a while.

you all have a blessed night

thanks again so much you guys for hanging in there with me.... i have no earthly clue how i managed to make it an entire week under so intense pain without any pain meds...... shew, this one has totally wore me plum to the gills I will be most grateful when all of this is behind me....

thanks again, so much, everyone

tennille (finally resting:)

Hi everybody..... i just wanted to pop in right quick and post a quick update. Since seeing my DO on monday, things calmed a bit but only till about 11 at night and then it all started back with a vengence. I called her the next day (yest) and she knew i was in some major pain, but couldnt get me back in to see her till 11 today..... so since monday night, yet again, no sleep, walking the floors, icing, heat presses, you name it.... i cried and cried and moaned up until today.

I went back to the DO.... but we first was going to make a 3rd trip to the er this morning at about 6 am.... but halfway there, i felt things were settling down to a tolerable level.... so i said 'turn around and take me back home.... ill make it to my DO appt.' So we came back home... only for the pain to restart viciously again. Since the hubbs had to work and all, i called mom again to come get me and take me to my appt. Haven't showered in 3 days and i didn't care what i looked like, i was in to much pain to care. She could see it all over my face, body, actions..... she knew i was in some terrible pain and that i hadn't slept in almost a week.

my side of my face is a bit swollen and now my bottom lip, gums, teeth feel like they had a novacaine shot (thats been going on for a day or so).... anyways, she said that i was in too much distress and pain for her to do any more facial manipulations, etc.... so finally without me asking (well i did get out that i direly needed pain intervention, and i need it bad)...

so she wrote a script for percocet and a few muscle relaxers until i see the oral surgeon in 2 weeks.

The pain meds and the muscle relaxer are working pretty ok..... it doesn't take all the pain away though but boy does it make it manageable......

i also got the most expensive mouth gaurd at walgreens (well my mom did).... so im using it some but it seems to at first make the jaw hurt more? i wander if that means i need to wait till i see the oral surgeon.... cuz i told my DO doc that my bite feels very off now for some reason.

anyways, just wanted to post a small update.... so again, im going to rest a bit and i'll get back to you wonderful ladies when im feeling much better...... knock on wood for me that the percocet continues to work.........

and to the newbie~ welcome... so good to meet you on here you have lots of great advice

love you all.... to be contd

tennille

hi you guys... i took a nap for quiet a few hours, seemed like only secs..... but woke up in the severe pain again..... ugh.... so i paced the floors alternating with a cold pack (those gel things) and alternating with heat if i can take it.... i also propped up another pillow and laid back, closed my eyes and massaged both sides of my jaws, joints, gums, under the jaw, the bones behind the ear..... not sure if im doing things right but massaging for a while, deep slow long breathing techniques and just really trying to meditate. I took my night meds pretty late, which included the second dose of todays prednisode, plus the diclofinac, klonopin, and the marinol. So, after pacing for about an hour, heating and icing, then laying upright massing everything for a little while.... oh, and for some reason, when i breathe in, my ear hurts that peircing hurt, but i have signs of infection, etc.... so, i used one of my ear plugs and lightly plugged the ear and it is made a noticable difference as well... i wonder why?....... now im at a bearable pain level thank God........ i was really losing it there thinking, man i can't do this again or any longer ugh

rissy ~ i have heard others talk about it on here, but never really looked it up.... but did just now. That sounds pretty much on the money if you ask me. I wander if an oral surgeon could diagnose that? They are going to refer me to an oral surgeon. I'll have to mention it to my docs! thank you!

to be cont'd

in the meantime... im thankful for some relief again.... hoping it continues to last

typo*** i have NO signs of ear infection, just a little bit of fluid, like bubbles in the ear of the jaw that hurts??

hi you guys... i took a nap for quiet a few hours, seemed like only secs..... but woke up in the severe pain again..... ugh.... so i paced the floors alternating with a cold pack (those gel things) and alternating with heat if i can take it.... i also propped up another pillow and laid back, closed my eyes and massaged both sides of my jaws, joints, gums, under the jaw, the bones behind the ear..... not sure if im doing things right but massaging for a while, deep slow long breathing techniques and just really trying to meditate. I took my night meds pretty late, which included the second dose of todays prednisode, plus the diclofinac, klonopin, and the marinol. So, after pacing for about an hour, heating and icing, then laying upright massing everything for a little while.... oh, and for some reason, when i breathe in, my ear hurts that peircing hurt, but i have signs of infection, etc.... so, i used one of my ear plugs and lightly plugged the ear and it is made a noticable difference as well... i wonder why?....... now im at a bearable pain level thank God........ i was really losing it there thinking, man i can't do this again or any longer ugh

rissy ~ i have heard others talk about it on here, but never really looked it up.... but did just now. That sounds pretty much on the money if you ask me. I wander if an oral surgeon could diagnose that? They are going to refer me to an oral surgeon. I'll have to mention it to my docs! thank you!

to be cont'd

in the meantime... im thankful for some relief again.... hoping it continues to last

awe man you women are a Godsend!!! I had totally forgot that i have marinol..... and i hadnt taken it in a few days..... so i took a higher dose than what he wrote, but doc is comfortable with me 'experimenting' on doses, etc.... just as long as im not mis-using anything or abusing anything.... but i was like, wait, i have that, let's try it..... i take it..... BAM.... 30 mins to an hour later and my pain has decreased by at least 75%, no joke!!! and im like what??? (i had not taken the new meds yet)....

I really didn't think marinol would work, but now im guessing it does...... very interesting.

im able to feel calm, my jaw no longer feels like a warzone inside there... .and i can't thank God and everybody enough for the relief im feeling!!!!! i can breath again and my jaw feels even relaxed without effort.....

issie, thankful and bella... i have more to say..... im going to rest some more, but totally had to share that.... nothing touches the pain, except for marinol?? That is weird....... but im very glad. Still discomfort and pain, but on a very tolerable level now.... i can tolerate this...... crossing my fingers that it doesn't act up anymore and continues to calm down.... i think the is the first 'break' in the severity of pain that i have had since thursday..... so maybe the DOs and marinol did indeed help... hoping the other meds will help in addition......

im going to rest for a bit.... so good to hear from you bella.... you have been on my mind constantly..... i wish i could come get you and we could take care of each other!!!!! wouldn't that be so nice??!!!

ok... again, i'll rest up, i might be able to sleep for a bit for the first time in days... wow.... just wanted to share right quick.... and i'll be getting back to yall, cuz i have stuff to say... lol....

love you all

tennille

thank you everyone! im still in alot of pain, and had to call my mom at 5 am crying (and i dont cry...... but i had cried, moaned and walked the floors holding my jaw since about 11 last night. Broke down and called mom to take me back to the er. Another morphine shot that did absolutely nothing at all. I was in so much pain all i could do was just cry. They gave me that shot, which done nothing, i still laid there and cried in severe pain and they sent me back home. Even though the pain was not diminished even the tiniest bit.

I was able to calm down a tad for a few hours until my ostepathic doc appt at 10:30.... that's where they do the massaging-slash-chiropractic type moves?? the last time i had it done was about a month ago, and had great results, but i have never in my life experienced pain like this, nor on this level, severity or intensity. So, 2 hours with the docs working on my jaw (had 2 different DOs working on it)...... we accomplished about a 30% reduction in pain. I can almost bear it now, but so wore out from days upon days of no sleep and pain.

We are going to do the mouthpiece. I don't grind my teeth at night but i noticed i stress the jaw, etc during the day sometimes. Oh yea, yes, we do think i have elhers danlos, which was discussed today too. And these DO docs will be doing techniques every 1-2 weeks from now until i see some improvement not only in the jaw but headaches, etc. too, other joints, etc.

My tmj started about 15 years ago.... had to go to an oral surgeon. He then prescribed pain meds and muscle relaxers, due to my jaw was so locked up, you couldn't even get my finger between my teeth, and it was like that for over a month..... then after that episode, i've only had a few mild flare ups along the way, till now.

I really am trying to handle all pains without any pain meds. Do i need them? oh yes, do i ever..... this would be the time, but i seriously don't want to have to take them, and im not even sure they would help, if morphine twice didn't even phase this. I have a feeling i may break down and actually ask for some pain meds.

For now, they decided on another short steriod dose pak..... like for 5 days (i just finished with that prednisone that i started at 30 mg twice daily for 3 days, then tapered down..... being on it a total of 2 weeks. The intense flare up and pain started the very day i stopped the prednisone.... getting more intense the past 2 days.

Also, they said that doxepin was being used for tmj as well and they were having good results from that....... im already taking doxepin, but not daily, just like every other day, due to the mcad flare up. Now it will be increased from 10 mg to 25 mg.... i think at least until the jaw settles????

I still cannot think of anything that i have managed to do to have caused such a quickly intensified and severe pain like it is.... i have never experienced pain on this level, ever... and boy do i ever feel so sorry for those of you that do deal with pain daily...... I have always been tough when it comes to pain but boy has this humbled me and shocked me to say the least.

So, i guess it's prednisone for another few days, increased doxepin and added diclofinac (hope i spelled that right). Im hoping i can tolerate the pain until something in there settles or calms down. oh yea... they taught me a few methods to manipulate my jaw, etc to do some stuff at home.

Bella, im checking that link out most definitely! and everyone else..... you all said things that seems to be right on. I'm trying to pay more attention to how i have my mouth and tongue during the day. I noticed a while ago, that i started to chew on the inside of my cheek, and i was like, omg, stop!

Sigh..... im still in loads of pain. Im still wondering why nothing is touching this pain? tylenol, advil, morphine, toradol..... nothing is touching it whatsoever, which has added more stress and has me in freak out mode...... i honestly thought i would get relief with the morphine shots and im still asking, why did it not even have any effect on the pain? i always thought morphine wiped out all pain. ugh, i hurt so so bad.

Again, thanks everyone i read each post and am totally trying everything everyone mentioned..... cuz i have no idea what else to do. I asked them today what do i do if this intensifies again like it did yesterday/lastnight and im passing out left and right again from the pain (yes, i was passing out with the intense surges, or pain spikes.... even though the pain is constant, im still getting spikes and surges that literally floor me..... i havent drove because of this since thursday when it all started again.

If i sound a little off.... or didn't touch on someone's post, forgive me..... i haven't had sleep since thursday and im still in loads of pain, but at this point, i am bearing it without crying for the most part. And just hoping it eases. Trying to meditate, use relaxation methods in order to try and stay calm and all. But im not accomplishing that very well cuz the pain is so overwhelming. I mean, wow.... i truly didn't know pain existed on such a debilitating level. Im still just shocked at the severe pain..... i just don't get it.

again thank you all very much..... im going to try and rest a bit..... i'll post an update on how it's going

if you are the praying kind..... i would so much love to have your prayers for the pain..... if you aren't.... please send positive thoughts and energy my way...... i just don't know what to do about the pain and it is so unreal

love yu all

tennille

I've been having pretty severe bouts of i TMJ pain. It is intense, constant, but also spiking to points where i almost blackout or i quickly vomit unexpectedly. I have been going to my osteopathic doctor (a DO) in my doctor's office (he has many specialists in there, and he's an integrative doctor) and have had excellent results from their treatment, pain free for 2-4 weeks with no pain meds whatsoever. But I took prednisone for the first time, high dose, taper down, totall 2 weeks on it.... have been done with for about 3 days i think..... during the taking of the prednisone i had no pain whatsoever, and i felt pretty good of course, even my legs felt strong again. But once i tapered off, the jaw pain is unreal. It is in my ear, the jaw joint, my lower jaw into my teeth, same with the upper, my lower skull in the back, i mean it's intense, like an ice pick being hammered at. Its as if i can feel every single nerve that produces pain itself.

I finally went to er today. Got a shot of toradol, and valium. That did not work. Then a shot of morhpine, but i think a low dose, because I did not get loopy or really feel anything...... just an easement in the pain to a tolerable level, it never 'got rid of the pain' in order to give me a rest. I see the DO doc in the morning, but i can't always easily see the DO doc, and when i have flare ups like this, I just don't know what to do but lay and pant, and cry, and moan in pain. I am in so much physical pain that i never in my life thought possible. And you guys, i have a high tolerance for pain, i really do, i always have. But this is just unreal.

Do any of you know of anything hollistic, or natural , or even conventional that has helped you decrease the jaw/face/jaw joint pain? Is there any type of herb or anything i could apply typically?

thanks for any advice with it

we do think it could be connective tissue disease related

tennille

I was just wandering. I bookmark the research articles that i read on our diseases, like we all do of course. But i have a hard time keeping up with some of the others posted on here. I wander if there could be a section of just research articles, all in one place here, where we can come back to again and again. I'm sure it would need some organization. It's really hard for me to find alot of my articles i've saved, it's if they 'expired' in my computer and i no longer can find most of them

anyways, just a thought......

it would be super helpful....