brethor9

Hi Julie Thats one of my worst symptoms and I can totally relate to the jitteriness/ adrenaline rushing......I thinks its because adrenaline constricts the small blood vessels in the hands and feet? I could be wrong....but I have the same episodes.....I have Raynauds too and when I am fighting the excess adrenaline it gets so much worse....sometimes I find wearing gloves help Bren

Yes, That definately is Raynauds and those are the symptoms I get, Kaybers Mom! I think it is relatively harmless just uncomfortable.... but doesnt hurt to speak to a Dr if it is worriesome Bren

Rama So glad you are having a positive trial run I was prescribed Mestinon awhile ago but have been too afraid to give it a go as I lean more towards the hyper side of POTS high adrenaline and BP......would you say you are more of hyper type? Bren

Yeah Naomi I can totally relate....fired my GP after 4 yrs of listening to his crap that it was stress! stress doesnt turn your legs blue.....duh! I honestly think most Dr's cant be bothered (except for a relative few... I have finally lucked out with a couple) because...... 1. they are too busy/ preoccupied to really care 2. their patient care load is way too high and they just dont have the time to invest 3. they really dont know how to fix you and cant admit it so they just brush you off 4. they are in it more for monetary gain (I have seen this first hand as I have worked with many dr;s over the years) I hate to sound that negative about Dr's ....its sad but I really do think its true......if you dont fit into a neat little box for them they cant be bothered..... I still deal with this everytime I see a new Dr whether a specialist or ER...they constantly (in a very smarmy tone) ask if POTS.MCAD is a VALID diagnosis...wink, wink...because I have never heard of it......mmmmmm really??? WOW how ignorant are Dr's that just because they havent heard of an illness it means its not valid! didnt know that they are all well versed on all new and emerging illnesses at any given time.... I mean no wonder they never have time for us so busy learning ....... I understand Dr's are only human I would have more respect for them if they would just be honest and say I DONT KNOW rather than make me feel like I'm crazy...... thats my vent only my opinion.... Bren

Florinef until just recently, I have had to stop it....giving me bad blood pressure swings even on a small dose but looks like I have some mast cell involvement...so far seeing slight improvement with antihistamines, vit C, zantac, lots of fluid loading.......every other med ie beta blockers make symptoms worse Bren

Glad to know you are feeling better Emma!! I wish Dr's would just admit they don't know enough about POTS before brushing off symptoms.....with POTS you never know! Not to say that you should never take chest pain seriously (you should) but so many of us suffer from it on a regular basis....we cant all be crazy!!

I was thinking Pelvic Congestion awhile ago as for many years I had horrible pelvic, lower back and leg aches (not cramping but vascular)....it got so bad I ended up having a partial hysterectomy.....right after that is when I came down with severe symptoms.......the pelvic pain is better but nothing else....my leg veins and back ache like crazy and I have noticed when I bathe that my whole pelvic area stays white...almost like it has no blood flow......I still wonder if this isnt tied in somehow? I have broached the subject with many dr's and they look at me like I am nuts yet it makes perfect sense to me duh Bren

Oh Tinks!!! I dont really have anything useful to offer...just hang in there and BIG, BIG Hugs!!! Also like Issie said I would not be waiting until April for the MRI results.... your regular GP should be able to access a copy no problem....stay strong and dont let them push you around!! DEMAND answers..its your body and you know it best.... Bren P.S Hope your little guy is doing well

I am an INFJ: You are: slightly expressed introvert moderately expressed intuitive personality distinctively expressed feeling personality very expressed judging personality seems about right

Sue....thats interesting I have a hard time breathing through my mouth also.....like its too much air at once and the lungs/system isnt used to it.....I also have a deviated septum and suffer chronic congestion....I think over the years my body has gotten used to a lesser amount of oxygen

Hi Sue I have actually noticed changes to my breathing pattern also since getting POTS....mine varies though....sometimes it seems so slow I feel like I have to remind myself to breathe....other times I notice I am breathing much more shallow than I used to ....I take alot more deep breaths out of no where and for no reason.......oddly enough though when given oxygen in hospital it almost makes me feel worse....sometimes I think thats because my body doesnt know what to do with all the extra oxygen Bren

yeah me too tennille!!! I would love to get the body temp thing under control.....I asked my auto doc what can be done and he just smiles and says its POTS ......not very helpful PS Have the most awesome time at your TOOL concert!!.....I so miss going to concerts....that was my fave hobby before getting sick....last one I went to was U2 360....I miss it sooo much!!! Bren

Serbo, I think I get some of what you are describing.....for my brain fog....it is almost like there is a clouded curtain pulled down over my senses....everything seems to be hazy and I feel muddled? just a little off....I dont hear things the same, taste the same and cant concentrate, my head pressure gets far worse and I swear at times it feels like my brain is swelling lol....everything is just a little skewered......what disturbs me is when I have an hour or two of clarity.... its literally like a clearing of the head....like the curtain gets pulled up.....everything becomes clearer, brighter, focused and I always think to myself this is what normal used to be then it goes back to POTS normal .....this illness is soo weird.... Bren

mmmmm.....come to think of it I never have goosebumps either....even when I am so cold I am shivering.....but its more of an internal cold.....like I cant regulate my core temp Bren

I too have been having the exact same issues and it just started a few weeks ago....not sure what the heck is going on...will be seeing GP next week and I am going to bring it up but she probably wont have any answers Bren

I do! I always try to explain to my doctor its like really bad constant pressure with this shunting feeling? Its so hard to describe it but it feels like my brain is pulsating or something....I get this movement feeling....soooo strange....I like you have MRI and they are normal...its an awful sensation Bren

Yeah I definately worry about the med side....sometimes I wonder if by taking them I am not just making matters worse. I hate doing a band aid approach....I believe if you never find the underlying cause ait cant be treated properly. The only drug that I found to be any help was Florinef but it has now started to be a double edged sword with its own side effects...I am having volitile BP swings and headaches even on the smallest doses. My docs are now investigating me for MCAD because of flushing, rashes, bone pain etc. The zyrtec helps some but it has its own side effects mainly makes the dizziness soo much worse and thats my worst symptom! So I am almost back to square one med wise.....oddly enough Zantac is the one that seems to make the greatest difference for me.....hang in there Allie! Hugs! I hate the dizziness too

I had been dealing with undiagnosed symptoms for a few years before I crashed.....I experienced total system failure in Feb 2010 one day at work...just collapsed and it went downhill from there....was never able to return to work Bren

Hey Allie.....sorry to hear that I hope the beta works for you....unfortunately I have tried almost every one and they just seem to make matters worse. I keep telling my docs the only reason why my HR and BP are so wonky is because my vascular system isnt circulating properly. Sometimes I wonder if we shouldnt be testing vascular drugs if such a thing exists? all the beta blockers do is make me feel like what blood i have is frozen and turn my hands blue Bren

Hey Dani This has always been my biggest struggle too.....I am constantly lightheaded 24/7 dizzy and off balance....some days its is so bad I cant even get out of bed. I drink tons of fluid but its like it doesnt matter because it never gets to my head.....I really wish there was something we could do about this I am going to talk to my specialist next about octreotide maybe.......I pool even in my arms and hands so I definately know there is not enough going to my head and I am symptomatic lying, sitting and standing....when its bad...its bad no matter what position. Bren

Hi Jen YES YES YES!!!! I have totally been there and I am still trying to get over losing myself. It is a grieving process but the sad thing I find is that nobody is grieving with me. Its like I died and nobody realizes it.....silly I know! Its life as usual for everyone else and honestly that makes me even sadder sometimes....and angry. Its not fair that while I struggle everyday to do the simplest things that my friends and family are whining about having the latest flu bug. I was a real go getter, incredibly athletic before getting this stupid illness and now I am lucky to walk around the block .....I like you go through phases of grieving...most days I can get by but Christmas was evil...I just couldnt enjoy it...too sick and that made me so angry! (and everyone saying how good you look while you feel you are dying inside....arrrgh!)...I am in the midst of a relapse and just get so tired with the back and forth of this illness and get tired of dealing with doctors who dont know enough about to treat it. Thats my vent! NOW....after the pity party and tears I pick myself up again and get on with living this new altered life. Its all about perspective.....it is true that this is a horrible unpredictable illness and it has turned my world completely upside down....but it could be worse....its not life threatening....I still have my wits about me most days ....I have my friends who are great support.....my wonderful husband....and my beautiful autistic son who is my inspiration (his world is far more difficult to navigate than mine). Watching him puts me in check .....its normal to feel what you are feeling Jen....we are young and never think that we are suddenly going to get hit with some rare illness that cant be cured or barely treated.....but it will get better I promise! Knowledge is power and helps so much with the coping. The more I learn about this illness through research, doctors and the wonderful people on this forum the better I can deal with it and not be so afraid and isolated. It has been a blessing! So be kind to yourself, try to keep it in perspective, learn to appreciate the little things again and never give up on getting better! and if you need to cry and be angry...go ahead! just my 2 cents! Hugs Bren

Akavella You may find you actually feel better during pregnancy....I remember reading that your blood volume can almost increase by 1/2 because of the changes to your body .....I felt good until about 9 months after giving birth and then I started to have symptoms congratulations on your pregnancy....hugs Bren

blitzk I also have my hands turn red with the white spotting....my auto specialist says it is blood pooling....I have it in my legs, stomach, arms and hands .....I also suffer from Raynauds which contributes to the hand thing....in the world of POTS bodily colour changes are pretty standard unfortunately...try not to over exert your system until you get some answers (sometimes it can make POTS symptoms worse)....really push your docs to test you......good luck! Bren

Rama I totally feel for you and can sympathize!!! I am going through the exact same thing.....I was doing really good up until an episode I had just before Christmas....I stood up fast....got this really huge vein pain in the right side of my neck....heart rate and blood pressure went through the roof.....felt like I was having a stroke....since then nothing has helped or made the severe head pressure/ dizziness stop....havent changed my meds....tried a beta blocker for a week but its just making everything worse and the doctors dont seem too concerned......no ryhme or reason to the change but I now feel like I havent made any progress at all so sorry you are going through this....it must be a huge letdown after being in remission for awhile.....big hugs! Bren

I had a partial hysterectomy in 2008 ....kept my ovaries....but thats when I really crashed with POTS I have had hormones tested and the docs say they are within normal range.....but every women needs a different amount of hormones to feel great...not whats on paper....makes me wish I had a baseline done before surgery....anyways I too have been having issues with monthly cysts on both ovaries and wonder how much of a part they play in POTS Bren