dizzygirl

wow melissa... hope tht your swimming in your own fish bowl soon...with your kitty too...my prayers and thoughts are with you.. lots of love linda

adrenaline surges *typically* hit me about 2-5am.. i will get waken up with sever gut pain.. and i will shake uncontrollably from the inside out.. and get the chill and be hot all at the same time.. i will get goosebumbs all of as well.. uhm i get nausea really really bad.. and severe diarhea.. some time vomitting...visual problems.. I will feel like i have electricity surging thru my body.. i generally feel it first .. the electricity feeling in my head.. its like it goes from ear to ear across the head.. then i can just feel the adrenaline surging thru my whole body..and i get bad body flushing i turn red red red..beat red...they last for several hours some times .. i have a few differnt types of adrenaline surges.. some times i paralyze.. some times i faint laying down.. other time i get a whoel host of other symptoms to go along with the stuff above...(ie sensation of bee stinging..tight jaw..) they are no picnic to deal with.. i hope that you can find something medication wise to help you with them..

when i crashed out in 2002 with bad pots my bp's where qite high.. and had been running high for a while.. and i was like 19-20 at the time....i had spoardic high bps's before this tho.. Uhm i experience both very high and very low bp's and everything in between.. it the nature of the potsy beast... hope you son can get proper diagnosis

my bb.. betaxolol an clonidine.. help with my HR... its the best combo that ive been on....the betaxolol has really been a godsent to me..seriously.. my hr where (pre betaxolol) running 200-240 range.. and where very uncontrolled... ive been on betaxolol about 2 yrs now or so.. and the highest my hr has gottne that im aware of is about 130-140 ish.. and the clonidine... helps alot with my adrenaline surges... i havent had a real bad one in a few months now.... Uhm i also tried cymbalta and mestinon... for some time.. and i did find some relief with these meds for s short time.. the cymbalta gave me burst of energy...and helped wee bit with leg pain.. and the mesitnon helpm me with concentration and brain fog... Unfortunelatly I was on High high doses and teenty tiny doses for a while.. and the side effects began to out weight the benefits... But like i said at some point i did get some relief.. I also was on meds like medrol pack and prendisone.. medrol pack was for breathing issues and prendisone for allergic reaction.. and both drugs gave me a large over all boost in feeling decent..but i dont tthink* these are normal drugs for pots...i do believe they are steroid meds. but they did help me.... oh yea the other things that used to help me alot where IV fluids.. and oxygen.. it used to give me a huge boost

i hope that you diong better today.. and feel better too.. love and hugs dizzaloo

oh yes most definatly! prayer and good/well wishes are still with you melissa! love dizz

hmm good suggestion.. i learned some new wake up things for myself that i didnt even know where available! I know i absoultley despise my alarm clock! i always have the urge to want to throw it down the trash chute..LOL.... can you get the light alarm thingy anywhere? like walmart or something?

i was just wondering if anybody knows how sunfish is doing? any updates on how she is doing since her surgery over the wknd? thank you! dizz

oh ling.. i know you've had a really rough time.. wish i had words of wisdom for you.. but ernie has said it well... thinking of you.. lots of love linda

melissa so very glad to see you post on here... thought and prayers will be with you tomorrow.. good luck and god bless.... much ove and many hugs linda ps..sophia..i totally love the moose pics.. that baby is adorable!and those ears!

aww im sorry about your chloe passing... but these 2 new pupoes sure do sound cute and like they are going to be loads of fun!!! enjoy your new babies

aww what a cutie! she looks like she needs somebody to love to pieces! poor baby....

thank you alexa... i have never been checked or eval'd for EDS... But i plan on asking it about it.. for it to be ruled out anyways...before i even consider anything surgical if things come to that anyways..... I looked up those collars on line.. wow they are attractive little fashion statements..***giggling****....but if they work god love them... Im sorry that you've had suchs a rough time post op.. that sounds scary and well painfull.. hope that you improve with time and treatment....

may i ask what an ASPEN collar is>? and a miami J ?? do these help relieve pain.. I mean .. well i know what i mean ...LOL.. in my head but its not coming out right..hahhahah what im trying to ask i assuming it ofers some support... does it help relieve pressure too? and do insurance companies typically cover these?

hi.. Uhm lets see.. no i dont have a cervical collar.. i used to have one like 6 yrs back.. but dont any more.. i do have a cervical neck support pillow thingy.. its a U shape memory foam thingy whic i use in car rides and long trips... to support my neck b/c it begins to feel not nice about 15 minutes into things... about diamox.. i was on it for 3 days.. and then wnet off of it b/c i developed some horrible muscle body fatigue... i was unable to stand due to the muscle feeling .. and i felt like my lungs where wet.. and had trouble breathing on the medication.. there where afew other things but i cant recall them right now.. but i was taken off the med... as for pain manangement... i have a pain management dr..(a neuro) but she treats my headaches.. as migraines.. but the "migraine" medication does not touch what im feeling...ive tried emergency migraine meds both orla and IV.. and prevantive... few wks aog in the er they gave me a nice combo of stuff.. and that brought me temporary relief... alexa...yes im seeing heffez.. and im just waiting a day or 2 for my check for traveling to clear in the bank before i call heffez's office...But im going to be calling them with in a few days to get in sooner b/c i cant atke it any more! so im hoping to be leaving for milwaukee very soon...and im ging to check out chiari yahoo group.... i thank you all so much for your susggestions means alot

yea i was on diamox for a very very short time and was quickly taken off of it.. it was given to me to relieve pressure from swelling on my brain.... maxine i had a tenz unit back in 2001?? i think it was and that actually brought me some relief.. along with the pain meds ans pt i was recieving at the same... Im calling the dr s office im going to in october to see if i can get in sooner....im praying that i can..b/c i would boogie off there tomorrow if i could! Cushings.. you know ive had the blood test for that several time done both in cleveland and pittsburgh and it comes back normal.. but i believe that there is another test that can be done besides the blood one.. i havent had that one done ... But i wonder if it might be worht the whirl to have it done b/c i on physical appearance look like text book case of cushings... and apparently a bunch of other drs have thought so too.....UH...shoot i forgot what i was going to say............ next thought.. i was diagnosed with pcos as the reason for my stopped periods and other endocrin things going on.. but i have been on treatment for pcos for some time now... and im still not getting a period.. and more symptoms seem to be appearing.. that are realated i believe to the endocrin department... I do wonder if the critters on my pituitary and pineal gland have something more to do with whats going on but again it takes finding the right endo.. who wants to tackle MY ISSUES.. its like finding a flea in a hay stack... Do any of you find that if your base of the skull is rubbed ( I have HUGE Knots there or something) that you black out or come very close to blacking out.. or get alot of freaky floaty things?? I did alot of sleeping this wknd.. Im finding it hard to stay upright for long not so much with pots but b/c of pain.. and it tires me out tremendously.. and i have to go lay down and sleep 8-9 hours or longer for sitting up ...kind of amazes at where my quality of life has gone to...the pits.. I really hope that i can get some help with my upcoming appointment... and maybe pointed to addition help if posible.... thanks for the support and suggestions it very much appreciated.. and thanks for reading my ramblings~!

glad your moved to a step down unit! I hope that they can figure out what is creating the sepsis.. and that your home and in your own fishbowl sooner rather then later.. my thoghts and prayers are with you and your family... much love and hugs linda

hi ya folks... im wondering what those of you who have chiari.. what do you do to relieve the pain and pressure in your head.. Ive had a bad run of it this past wknd...and my pcp will not give me the stronger pain medication b/c i have had some problems ijn the past with allergic reactions and stuff like that.. and what im not allergic too.. really gives me a rough time pots wise.. he told me if it gets unbearable to go to the ER.. BUT you know ER"S it you go to often for pain relief they start to think you an addict or something like that... for a wk straight i had some bad pain and pressure.. and on friday it really reached its peak .. and i was a mess.. saturday just as bad.. and today not as bad...ive had some nasty swelling in the back of my head..neck.. and down my spine.. along with my collar bone and various other spots ..YOU should see my FOOT! just looking for relief suggestions until i can get to the dr in october.. i really feel that i have reached my threshold of tolerance for dealing with this day in and day out.. and all i want to do is cry.. b/c im not really getting a break from the pain.. its thru my whole body as well.. not just my head... Wondering if you've found a pain med that help with pain... but doesnt moneky with your pots real bad?? thanks a bunch

Hi lauren great to see you on here.. ive been wondering about you!! wow you've had a rough road girl.. Im glad to read tho tht your seeing some improvement with meds.. I really hope that it continues well for you!! love and hugs linda

Oh boy.. thanks for letting us know emily! Melissa I hope that your feeling better very soon! my prayers are with you.. love and hugs linda

bumbleestumblebee.... i hope that if you can get iv fluids that it helps you this time around.. and that you can lay down this time!!! also hope that your body will absorb the b12 properly and that it will indeed give you a boost.. when you say your head is sloshing around.. does it feel like your brain is jiggling around in there? like your brain is going to be pulled out thru your nose or something weird like that???? that sounds weird.. but doyou know what i mean?? take care lots of love from anvilhead dizz

hi i get 1 1/2-2 liters run thru ( as an inpatient) over 36 hours.. we've found that if it is run thur any quicker that i have a raise in bp to quickly.. and that im more apt to have these brain squeezey spells.. and the last time i was in for fluids was june.. and i had a rough spell.. an decided that i wasnt going back in until "they the dr's" figure out why i react the way i do...my bp doesnt really go up any more either.. last few times it ran 80'-90 (low) over 30's and 40'... oh we have such crazy bodies....

hi flop... yea your right.. about half way thru an infusion.. i someimtes do get the feeling that my lungs are wet.. and an over all yucky.. feeling.. it does not happen every time i get fluids just once and a while.. come to think it of it.. i some times get my brain swelling spells at the same time... hmm i wonder why.. my fluid is run thru slowly... and like isaid it doesnt happene every time... and i cant explain it wither way.. wish i knew why it was happening tho with and with out fluids...my recent spell has cleared up alittle.. but the fatigue is a butt kicker...i just have a bit of gunkiness in my chest and stuff right now..

i get this too.. feels like an elephant on my chest.. you can try rice packs... you can take a sock and dump some uncooked rice grains into to.. and tie or sew the end up.. and pop that sucker in the microwave for a minute or 2... watch for hot spots with the rice.. and you can rest in on your chest... or you can put the rice pack in the freezer too if you do better with ice then heat... and like other suggested prop your feet up too... and rest..and drink something seriously salty.. like bouillion broth or something... in stead of using 3 cups to make use 1 1/2 and the broth will cook down and youll have a salty drink! which might help a bit...

i think its a bit normal to panic abit with new symptoms.. especially when you first diagnosised b/c you are just learning about pots really.. and whats "normal" and not normal.... its a process we all go thru.. and eventually you might not get so panicky... take it easy and know that we are all here with you.. and dont hesitate to ask questions and read old threads.. you''ll find alot of info... and will find that infact others are and have going thru what your experiencing... good place here for support! hugs