dizzygirl

sorry that you are dealing with this.. I hope tht you get some answers soon.. to ease your worries...and maybe a better treatmetn plan so that you can start feeling better oh yea i wanted to add.. i know you mentioned being hooked to monitors and such.. but would your doc be willing to hook you up to a cardio net monitor.. its a really neat monitor that picks up EVERYTHING! and it can be worn for longer stretches...It records events/monitors 24/7.... and it will back track some thing like 1 minute or 30 seconds after you hit the record button...if you have something abnormal that you want to be sure is recorded.. Im going to be hooked up to this is the next few weeks.. and this is my 2nd time using it..I like you have epsiodes of wher my HR drops and i know it drops but it has never happened yet while being a monitor.. so im hoping that this time around there will recording of this.. I wish you luck and hope that your docs willb e willing to work with you on this.. good luck

Hi folks.. iwas doing some research.. and couldnt quite find the answer that i was looking for..I was wondering.. do all forms of EDS involve hypermobile joints? superflexible bendy parts? Can you have a form of eds and not be flexible is waht i guess i am asking???

YIPPEE!!!!!!!!!!!!!!!! so glad that that test turned out ok for you! one less thing to worry about thta is for sure big high 5! hugs dizz

thank you rachel....im hoping that somebody can figure what is going on with me soon..b/c this is getting old real quick and is just draining me of any energy..or life

yea i faint while laying down in bed...its a horrible feeling especially when laying is suppose allieve faint or near faint.. i hope that you feel better..hang in there

Charlie horses is slang for nasty cramps.. and they hurt horribly!

Ugh these where leading to a bad autonomic storm... just posted about it.. i got no help at all from my pcp.. wont be going back to him....

thanks im going to bring it up at my neck doc app.

Hi last thursday i had a severe autonomic storm i think one of the worst ones i have had in some time.. before i went to sleep that night i had alot of high pitched loud noises in my head and ears.. and some funky thing happening in my neck.. I had also started to get shaking and was very cold... so i burried myself in blankets.. about 10 of them most of the being heavy ones.. and i was till cold and shaking.. anyways i fell alseep only to be half waken up with full body jerking and twitching...and i had electricity buzzing thru my body at mock speed i then went into paralysis..and fell back to sleep while still in paralysis..vaguel woke up again and was still in paralysis and my body was fuzzy.. disconnected feeling..like i was floating.. fell back to sleep.. woke up a short while later with severe gut pain from my sternum all the way down.. even into my back.. i swear that is about as close to labor as id ever get .. holy crud.. i dont imagine that it feels much different..i spent the next several hours in the bathroom with bad bad nausea and vomitting/diarrhea...it was horrible.. i went to the doc that afternoon.. i couldnt see straight i had black floaters and sparkly things flying around in front of my vision.. and my hearing kept fading in and out.. and so did i.. I kept getting the fainty things that i normally only get laying down.. jolts that where starting at the top of my head and zipping the center of my body and limbs.. that happened like 5 times.. and my legs felt like rubber.. I sat in the waiting room for over an hour....got back to be seen and mind you all this is happening and im still having uncontrolled twtiching and stuff.. that is very apparent.. my entire left arm was jumping and moving by itself.. so where my eyes and eyelids.. along withportion of my face.. my Bp was high.. for me high that is 132/90...I felt like my body was going to just melt at any time and hit the floor.. likei didnt have the strength to hold my self up.. this medical professional.. told me to come back in a fews weeks if i was still not feeling well and having trouble!.. I was like OMG!!!!! we where having a bad snow storm here that day..and he tells me to come back in afew weeks.. yea ok whatever!! Point since then I am having nasty sweeling in my head neck and along the spine... pretty much sweling and muscles spasms from the base of my skull clear down to my butt bone.. and its pain.. my feet are so cold that they hurt... my b/f has been rubbing my back...b/c my spine just hurts.. he keeps saying it sstill swoolen... and its just goes from bad to worse.. the worst of the sweelling has been from the back of my head to the hump at the baseof my neck across the shoulders.... ice is not relieving the swelling... today mybf checked my neck and its swoollen even more.. the swelling is going up into the back of my head.. in the past.. he used to try and rub my neck.. he wont touch it now b/c i tend to black out from that or once i stand i faint... he said that it isnt even knots like normal at the base of my head.. that it is just so swoolenyou cant really feel the space that is suppose to be there.. he keeps telling my head and neck is not normal.. that its hould be doing wahts it doing.. but it is... I also having alot of crakcing popping grinding.. and creaking... in my neck.. and it makes me feel yucky.. anybody black out of faint from there neck? if so why? and what do you do to relieve swelling when ice and stuff doesnt work? and what about swelling along the spine and hips.. and tail/butt bone? this stuff is having a chail reaction thru the rest of my bones and causing them to hurt almost as much.. but my bones always hurt as you all know i complain about it enough.. thanks for listening.. dizz

Oh do i understand your frustration!!.. I ve been fighting with the student loan discharge office in my state as well! I fought for over a year.. they kept telling me that they never recieved my forms and apps.. or that the forms where filled out wrong... they finally after i think the 3rd 4th application accepted it and i was approved or so i thought! for discharge of my loan... I never recieved any thing in the mail telling me other wise.. WELL.. COme about a month or so ago I got a letter in the mail telling me that my loan had been turned over to some agency..(cant think of it right now).. and that i should be recieveing information about starting monthly payments on my loan.. I was like WHAT!!!??? they said that my file had been turned over to the permanet discharge office.. and that even though i qualified for condotion dischagre.. that based on medical review i dont qualify for PERmanent discharge.. its abunch of hooey i tell ya SO I have to start the stinkin' process all over again.. I was so mad.. and peeved.. good luck to you... may you be blessed with much needed patience

hi just wondering where i could get a seat cane...and do you know if insurnace covers?.. and is there one that you recommend? thanks a bunch

any updates on how melissa is doing? anybody know.. any luck in finding a facility/doctors that can help her? prayers are with you melissa!

your welcome hen!! feel better persephone!

hi persephone.. I ve been on provera the pill..to stop and or start periods.. off and on over 9 years.. and i notice that it upset my stomach (ie nausea-- mild cramping).. Ive found that if i take it with milk or eat food with it when i take it that it helps with the cramping.. though the nausea is there.. but to a milder degree.. but any nausea....stinks.. I hope that you adjust to this med.. and feel better... big hugs dear! linda

Oh yea i wanted tomention about pool theraphy..(my sp is way of today sorry!) But my point.. Um a few years ago i did pool theraphy.. it helped me.. and i tolerate it much better.. then regular exercise.. normal land exercise i really have an extremely hard time doing....too potsy.. Start slowly with water therapy.. even though you might feel that you "can do" a little longer.. start out with set time incriments and work your way up.. i found that in the pool i was "OK".. but getting out.. with in minutes i was so tired! also.. if you can find a PT who will hop in the pool with you and do one on one.. that is ideal...it will just take a bit of searching.. I hope it will help you..I never swam in the pool but i did exercises.. with floaty things... and i used a step thingy to.. that i liked... hang in there girly...and call tci.. mayb they can give you something till you can get into see them.. hugs

lauren sorry you are going thru all of this.. Isent you a Pm.. hang int here dear big hugs dizz

Maxine Hi so very sorry that your pain is flared so bad.. Um I was on Ultram..(and as you know meds react differently to everyone).. But i found little or no relief from the medication.. but everyone is different.. my dad took the same med and it really helped him with pain... Maxine.. you might want to look into water theraphy.. you have good insurance so im most certain that you insurance will pay for it.. but water therapy might be good for you.. Im going to try to it for pain management.. i figured at this point it cant hurt you know.. thats for a longer term thing.. a good PT is key for you I agree.. but with all you have going on i also agree to be picky and careful as you dont want an inexperienced one... would your neuro locally or the guys from tci be willing to write you a script for a stronger pain bed.. for when you get flares like this?.. have you ever tried torodol? I ve found that if i take torodol .. if i catch the pain in its early stages.. i know sometimes it hits you full blast.. but if you catch the pain ewearly i know that i have sometimes had success with torodol.. only if given thru an IV.. it works much better that way.. oh and as far as depression goes.. geesh im sure all of us on here have been affected by depression to some degree or another.. how could you not living with the limitation of POTS ALONE.. Not to mention everything else you have going on.. not to mention that until recently docs havent been taking you seriously!! What the heck!...at least your not in denial that your depressed... thats a step in the right direction.. seriously though please get some thing to help you when you pain is in high gear k.. feel bettter big gentle hugs diizzaloo

oh melissa i am so sorry that things did not work out at U of M.. that really bites.. Just a though .. but have any of your old doc from Maryland been contacted? WHat about contacting John hoplins? I still say that MAYO .. somebody should be able to do something for you!! You are in my thoughts and prayers thru out the day... lots of hugs to you dear em.. thanks you so much for all youve done .. your a blessing!

glad your home amy.. hope that the remainder of your recovery goes smoothly and that you get to feeling better hugs dizz

hi.. Im having a freaky not cool thing happen in my head.. im having charlie horse's in my head... primarily at the base of my skull.. and in my left temple... i have a docs app. tomorrow.. just wondering if any of you get these.. they make my vision.. really cloudy and unfocused.. and make me want to barf big time..YUCK.. they really stop me in my tracks.. not that im really up and about but you know waht i mean.. ugh

thinking fo you melissa.. prayers are with you.. hope that everything goes allright... hugs dizz

hello Lisa.. i was given levsin by the same provider.. I have never heard of this being used for low blood pressure... Um I use only as needed.. and i was given the drug for bowel/bladder spasms.. nausea/diarhea.. if anything.. the drug may cause you to get a bit tachy on top of your regular tachy.. side effects i noticed from it .. while it works well.. it can really make you constipated pretty good... though if it makes your bp go up.. that is interesting.. i ddint know that! good luck hope that it helps you!

that is fantastic sue!! its great that you are in a supportive working enviroment too,... im sure that will help you alot CONGRATS!

oh my goodness! Sepsis.. amy i hope that you are feeling better soon.. prayers are with you.. hugs dizz

hello TEA! yes definatly a travel bag/suitcase on wheels is a MUST.. it makes life a tad easier...for traveling.. a few things i alsways bring.. a small personal CD player with extra batteries.. for when im feeling up to listening to some tunes.. if they have dvd player.. maybe a few favorite dvd's that make you laugh Um I always bring a cervical pillow with me to support my head while having to be upright .. i have a few.. one of full of buckwheat hull.. and 2 memory foam cervical pillows..its just good to have..its a life saver for me! a light wait thro blanket.... and plenty of underwear!..lol.... i always pack more undies then i will actually need.. one time after i had had a lenthy hospital stay.. i ran out fo clean undies.. and i was so bugged by this..it was bad enough that i couldnt shower! but to not have clean undies was torture! im a bit OCD when it comes to clean-ness!.. so i always pack alot.. lol.. oh yea a phone card for just incasies.. a journal and maybe some kind of small craft type project for some thing to do in a lull? good luck tea.. i hope that your tweaking go well!! are you going to be in patient? if so do you have any adress so we can mail you snail mail?