dizzygirl

Hi I had an endoscopy done a few months back.. and they used caution b/c I told them that my BP like to nose dive.. sometime a delayed drop too).. Um the only problems that i had.. is after the proceddure my Pulse OX was quite low..(79-80).. and so i'm told--I was forgetting to breath... the neds can make you feel spaced out afterwards for abit--they made me feel more spacey then usual.. Um Oh yes..b/c of my pots and stuff they only used half the dose of demerol then they would normally used.. I think that that may have saved me from a BP crash.. and they ran fluids thru as well.. you can talk to your doc and tell "him" to give you extra fluids and oxygen even after the test is over.. while you are in recovery.. and that you dont want to be sprung loose till YOU feel stable enough to leave I'm going for a colonoscopy tuesday (next week) i will let you know how it goes.. hopefully no surprise potsy things going on!!

Jacquie i am so very sorry that you got denied.. that really bites...whatever they are doing with the review--- after they are done with that you have the RIGHT to appeal there decision. and I would appeal it and fight it.. you can call a legal aide ofice and see if they would be willing to take your case pro-bono--- they wait might be lengthy for an apeal hearing... Most people DO get denied after there initial application.. I was denied at first... i had to wait alittle over 2 years for an appeal hearing... but i had the hearing with the judge.. and heard back in less then 2 weeks that i was apporved.. I know that things are unbelievably hard right now i feel for you.. I've been there.. hang in there... and fight this. you are rightfully entitled to recieve benefuts...

YEAH!! GOOD LUCK DEAR!!! let us know how it goes and what you find out!! BIG HUGS!!

Well MRI might be a good idea to look at your brain and pituitary glanda and stuff as well.. and look at your cervical spine...cant hurt to have it looked at.. I have had several MRIs.. my most recent one showed cysts or something on my pituitary and my pineal gland.. and a MRI in 2001.. showed a herniated disk at the c5-c6 level.. and my spine just under that is completely rotated in the opposite direction.. and i have scoliosis of the spine as well.. you can request your doc to order you an MRI goodluck

Happy Birthday Blondie!! i'm so sorry that you spent your b-day not feeling well!! feelbetter soon dear hugs linda

oh yeah.. somebody recently told me to try drinking about 3-4 cups of chicken broth (buillion cubes) and see if it helps w/ potsy headaches... i havent tried it yet.. but thought that i would throw it out there.. this person told me that sometimes if you are eting pressure and stuff in your head that it may be a sign that you need to pump up on salty/stuff-fluids..

hi i get the feeling daily that i feel like i am moving even when I am not moving.. it feels like I am on a boat that is floating in the water.. and i get the feeling that the bed is mvoing when I lay in it as well.. I asked about this feeling dizzy thing even while laying down.. and I was told that "technically" pots is suppose to only make you dizzy when you sit up or stand up.. but that you "can" get a combo or vertigo dizziness and pots dizziness even while laying down.. if your resting rate is higher then you are used to.. or high in general.. I would think that it may casue you to feel dizzy too.. b/c its pumping faster.. and stuff.. take care susan!! hugs linda

Nina-- my first thought was sinus infection or allergies---hayfever.. or something.. i know that that casues me to loose my taste buds for a while.. especially this time of year.. with all extra allergens floating in the air... Do you think that you are coming down with something possibly?? I dont want to jinx's you or anything..as I know its been rough for you the past few months.. I hope that your doc has some answers for you nina.. take care and feel better.. hugs to ya dizz

Jacquie--hi!! I'm sorry that you arent feeling well.. and no I dont think that you sound crabby!! Um to get checked out for migraines.. go to your pcp or neurologist.. and describe your headaches.. they should be able to determine if you are ahving migraines.. do you have pressure and stuff in the back of your head? that does get worse when you sit or especially when you stand? I call that a potsy headach.. and they can be wicked!! i hate them.. I think it has to do with your BP.. and lack of blood and oxygen to the brain.. maybe you can try loading up with water and salty stuff.. (i mean really load up) and see if that helps you headach.. i hope that you feel better soon dear take care hugs

Lauren--- dear I am so very sorry that you are having a rough time. and having to call 911.. tha just bites!! I understand you fears about being alone.. it is scary.. could you by chance get a life alert installed into your home or apartment? where you would wear a pendant type thing around your neck.. and if you needed help you push the button.. and they send help.. I know that I looked into it for myself.. but moved into a place that has emergency pull cords.. I'm thinking that life alert or life line.. runs about $100 to install.. and a monthly amount which i'm not sure of.. but its a thought.. I wish there where something more that I could do for you.. or more words of advice.. I think its time for a card dizz!!! lol you hang in there dear.. and take it easy k!! love and hugs linda (a fellow dizz)

hi-- you can cut the pill in half or something.. if you feel the dose is to high to start with and slowly work your way up to the 60mg..i was on 360mg of inderol at one point last summer.. and wheni went off of inderol. i was on 320mg.. 80mg 4 times a day..so you can work up to a really high dose if need be.. take care.. and dont hestitate to exspress your concerns to your doc!!

Persephone--hi dear-- I wanted to tell you that I know exactly what you are speaking of!! that humming bird feeling in your chest... i get that.. only i call it the vibrating in my chest.. i get it sometimes before i am going to have a bad paralysis spell or right before my heart is going to take off and beat like mad..(200-240-ish heart rates)YUCKY the parched feeling.. i get that too.. i'm sorry i dont know why.. during a bad spell in february.. right as the stinging was starting in my mouth.. my mouth got very very dry.. and I was beyond thristy-- and my tongue was stuck to the roof of my mouth.. and with in a matter of seconds i passed out cold.. the humming and stuff in your head.. does it sound like the vibrations or the sounds that refridgerator makes?? its what is sounds like to me.. did you pass out after the humming and buzzing got to loud?? I cant relate to what you are saying.. and going thru.. I wish that I had some advice to offer you to stop it or what it is.. but i dont.. my docs here in the states are stumped at the moment... and dont know what is causing these things to happen... IS this the first time that you have woken up like this? Have you had spells like this in the past? I ask b/c I have a few different types of paralysis spells.. once that you described.. and a few others.. none of which I' d care to go thru again... PM or email me if you want to talk! Can you ask your mom to stay with you thru the night for the next few nights to give you some peace of mind?? or talk to her and ask her to please check on you often thru out the night?? take care dearie!! BIG HUGS dizz

Melissa-wow!!!!!! my dear holy cow you have so much going on with you!! You definately are in need of that body transplant that you where hoping for under the tree at christmas!!! I'm sorry that things are so crazy for you right now.. and really hope that you start feeling better soon!!.. Oh yes I'm glad that you are able to finally eat some real food too!! that is great!! take care and feel better dear hugs and stuff linda

oH!!!!!!!!!!!!LING!!.. I'm crying as I read your post!!.. I'm so sorry that you are hurting so much.. I've never been pregnant. so I dont know what you are going thru.. but.. I'm sending prayers your way dear!! YOU can do this!! you'll make till the baby is born Iknow that you will..i know its hard right now... but son you''ll be holding that beautiful baby girl... and you will be so incredibly happy!! and beyond an emotions that you can verbalize.. hang in there dear!! you will make it! God bless you dear hugs and prayers for you!! love and hugs linda

hi ya mary no I did not have a migrain when I went to sleep.. shortly after I come out of the paralysis though I had alot of pressure in the back of my head and neck...i had a potsy headach. which is pretty common after something like that for me.. i have a history of pretty severe migraine at times.. but was not ahving one yesterday.. though i've also ahd painless migraines.. where I just have aura's and things.. but I didnt have that either.. I know that last summer i was admitted to the hospital with one of the worst migraine i have ever had.. and it casued alot of problems then... I'm hoping that he MRI will show something .. a casue for these things to be happening.. a fixable one. not that i want anything t to be wrong or anyhting.. but I want the pain.. and scary things to stopp happening to me!! I'll post when i know about the MRI results.. its going to take a bit of rangling though doc is going to ahve to fight witht he insurance company to et them to apy for it!!

hi folks thanks for the support! I just got back from the docs..she is going to call dr.g to get things going on getting the MRI from head to tailbone.. and she also mentioned having another EEG.. (which I'm allready set up for).. and a possibly EMG.. she wants to check for muscular dystrophy? or some kind of muscle disorder.. and the bone pain jesus it ***** big time..there really is nothing that we can do for the pain.. nothing really relieves it- or even mildly touches it... um MRI they are going to be looking for Chiari type things/brain stem compression.. she was like wow! i havent heard of chiari malformation since med school!!) they are also looking for disc herniations.. and old fractures in the spine and stuff.. that healed..herniation aside from what we allready know is there... And I plan on sending the MRI results and actual scan out to the chiari Institute for a neuro to review.. before I spend money i dont have to go there.. so that is the plan.. Oh yes.. and we are going to get things set up for me to get an aide.. since as of tonight I will be living alone! I'm taking my wheelchair iver to my apartment tonight.... my regular nurse who ususally sets me up for an IV wasnt in today.. so I have to wait till thursday to get an IV.. about my b/f.. i think that that is how he reacted (now that i've had time to think of it).. more out of fear.. thenany thing else.. he is always afraid that I'm going to die.. I've told him many times that pots is not giong to kill me.. but he has found me here at home unresponsive one to many times I guess.. and still worries...b/c lets face it paralysis is scary any way you try to turn it.. but ok I'm going to go lay back down.. hugs dizz

hi folks i had another really bad paralysis episode last night.. boy it was not cool.. I was laying down taking a nap yesterday evening.. I'd only been sleeping maybe an hour and half.. and I woke up paralysed i was laying there and I felt totally weird.. and irelaized that i couldnt move or speak.. but i could move my eyes and i could think.. my boyfriend came in about the same time I woke up.. and told me that it was about 7:45.. and that my show was going to be on soon. i was trying to look at him.. and it was like I was looking thru clouds or fog or something like that.. he stood there talking to me.. and i wanted to some how let him know that i couldnt move or talk.. i vaguely remember trying to blink and trying to move my arm.. and i couldnt.. he walked out the room and said come on get up.. i couldnt.. i was alying there.. and the humming in my head got very loud.. and i got a weird feeling in my body.. and the pain was getting bad with in my bone and my muscles.. I felt like I was being stung by bee's again... not cool--and at one point I poked my left arm and the rest of my body.. and everything felt rubbery.. like I have no bones!! seriously that is how it felt.. scary I think I passed out..b/c I floated out of my body.. and was like above myself. I never get used to that.. its weird and scary.. I'm guessing about 30 minutes later i'm still not up.. my b/f comes bak up stairs. and asks me if I'm going to get up.. I can finally move my right arm and i can talk some now.. and I told him i cant move..except for my right arm.. and he said "oh is your body asleep?" and he turned around and walked out of the room!!! and he went down stairs and turned the TV on and turned it up full blast. we have surround sound.. so it can get really loud.. and he left me there.. just left me there.. unable to move.... after a while I regained some feeling in the rest of my body.. and was able to get up.. but i was ahving alot of trouble walking..and was very unsteady.. and my pain level was getting more and more intense .. to the point that i was crying.. everybone in my bone hurt.. and felt like i had sprained it or fractured it.. and my bones felt like they were going to shatter at any momemnt.. and my muscles burned badly.. and felt like they were tearing apart..and the stinging.. was bad.. I was super cold.. from the inside out.. and was shaking.. and felt like I had a fever.. afew hours later my pain level was even higher.. i finally asked my b/f.. I'm like wouldnt you be concerned if somebody told you that they cant move? I'm like I was having a paralysis episode.. and i needed some help.. why did you walk away!? he said nothing and he walked away again.. and ddint barely say 5 words to me the rest of the night.. I'm wondering if he just doesnt care.. or if he is in some kinda denial thing?? any one have problems with there b/f or hubby when you have a syncope spell or something?? I'm still in a great deal of pain today.. and am going to the docotors this afternnoon.. hopefully they will give me something for the pain.. that would be great.. averycracklydizzgirl

yeah Ling!! I know you've got to be beyond excited!! Not long to go now.. and you be holding that beautiful baby girl!! I'm so happy for you!! hugs linda

WAHOOO!!!!!!!! YOU go girl!! I'm so happy that its over!! and you beat the beast of cancer!! You truly are a survivor!! YEAH!! enjoy atlantic city!!! love and hugs linda

good luck Julie i hope that you feel better soon

happy holidays!!

hey thanks lois! that is smething to consider! I am going to bring this up to my doc.. as ir eally think that the IV's help and my BP's are improveing after a treatment and i feel better!! So if they are going to let me do this long term I def. think that this is worth looking into... I thnak you for the infodear!!

yep dilation of blood vessles.. and blood pooling was what i was going to say too..

I just wanted to share that I am working with a psychologist right now on bio-feedback.. we actually havent started working on the "techniques" yet b/c of other things going on.. but she is familiar with pots.. and has treated some other pots patients.. I am primarily learning bio-feedback to help with insomnia and control my pain (bone+migranes)... I told bev at dr.g's office that I was starting bio-feedback and they were all for it.. and though it was agood idea.. my psychologist want s to teach me how to get deep muscles relaxations.. thru breathing exercises and stuff.. I'm more then willing to share what is involved in it if anybody would like to know via PM's or email

yeah I forgot to commet on the depression.. jesus who wouldnt be a bit depressed from time to time living with this!! depression can be profound if it is sever enough.. and its hard.. but I think that considering what you are going thru.. that some depression is normal.. and is a normal reaction ~~~ you go ahead and cry.. and get it all out.. then once you've done that Persephone look back at what you have ACCOMPLISHED despite how unbelievably hard and downright scary things have been.. and remember that you made it thru that.. and that you wil prevail!! and look to us.. we got your back girl! But with that said I am SO very proud of you!! you've done great !! and yes I wouls LOVE to meet you some day too!! if you are ever in the states.. let me know!! take care dear!! hugs linda