mae

Hi everyone, A question hit my mind before going to bed. Does anyone or all have this so called" brain fog" and does it pretty much stay with you all the time? or worse when tired Or even go away ever???? I get it everyday kinda like I'm in a DAZE all the time it does get worse later in the evening and even more worst while menstrual cycle. Thanks for reading and replying and have a good night

I'm very worried , I don't leave the house to much but I do have doc appointments . Theres only been one case in Indiana but it was not far from where I am!!!!!! I am gonna get masks for my family whenever we leave the house is that crazy????Hopefully they won't be sold out From what I read about tamiflu is not that great alot of possible side-effects especially the stories about what happend in Japan. What should people with dysautonomia really do? I'm starting to panic!!!!!!!!!!!!!!!!!!! Mae

Thank you all. And potsgirl what do you do since you can't do meds? I worry some what because of the extreme med sensitivity I have Mae

Because kidneys normally prevent large molecules such as albumin from being excreted in the urine, high levels of urinary albumin excretion?called albuminuria?can be an indicator of kidney damage. Albuminuria may also reflect dysfunction of endothelial cells throughout the body, which in turn may be a precursor to hypertension "October 2008 issue of the Journal of the American Society Nephrology (JASN) Another sign of CKD is proteinuria, or protein in the urine. Healthy kidneys take wastes out of the blood but leave protein. Impaired kidneys may fail to separate a blood protein called albumin from the wastes. At first, only small amounts of albumin may leak into the urine, a condition known as microalbuminuria, a sign of failing kidney function. As kidney function worsens, the amount of albumin and other proteins in the urine increases, and the condition is called proteinuria. CKD is present when more than 30 milligrams of albumin per gram of creatinine is excreted in urine, with or without decreased eGFR. kidney.niddk.nih.gov/kudiseases/pubs/highblood/ - Was his test urine or plasma?

From what I've read high Albumin can be from high blood pressure, heart disease, kidney damage or liver. Is he drinking things other than water? You can become over hydrated which makes you dehydrated? Mae

HELLO, Just curious about treatment with this combination of problems, I go to the doctor Friday and just getting some ideas ahead of time. Thanks ahead of time Mae

Well I'll try to keep it short #1 motion sickness as child (car riding) #sexually abused and emotionally also as a child #2 smoked pot and drink alot as a teen Had heart palps tried kava kava for anxiety attacks.... #3 caught the REAL flu virus and tonsillitis keep fever for 2 week couldn't bring it down #3 stopped smoking pot then started having what the docs DX as GAD generalized anxiety disorder (tremors with triggers ) like eating and other normal things #4 had 1st child dizziness never left, B/P plummeted with epidural 50/30 almost died and think I went into heart failure postpartum could no longer stand extreme heat #5 Serious emotional trauma was sexually assaulted #6 had 2nd child more Anxiety like symptoms #7 physically abused #8 Got divorced he took my children #9 Had 3rd child Hemorrhaged after delivery #10 Felt better than after 1st 2 children still had symptoms when I ate like a rush or hypoglycemic feeling #11 Got pregnant again in all pregnancies had weird symptoms I'd have migraines with aura's and numbness in hands and arms EVERY PREGNANCY #12 after baby was 6 months had recurring chest pains weakness dizziness all along and started blood pooling in feet #13 Last baby #5 Extreme dizziness right after delivery they send me home anyway was very fatigue thought it was just waking up every 2 hours , but it wasn't I became very ill starting my normal menses cycle after that delivery and it seemed like my heart was slower and shutting down, had the yard sale on the warm sunny day and had shortness of breath ,paleness, heart palps, tingling and went to the ER and another and another I finally demanded a ECHO and found my EF was 45% the cardio said my heart was weak and scheduled a stress test by that time 3 weeks later my EF was 70% he said I recovered. But my symptoms never left they called in postpartum cardiomyopathy and said never to have any more children and I asked him why are my legs and feet purple when I stand???? he said he didn't know and I was recovered its not my heart , so my journey began I went to many many doctors telling all these symptoms and they said its depression or that just didn't know what it could be. I have many possibilities of what could have caused it but by looking at my list it could pertain to so much . It could be genetic It could be toxins It could be blood loss it could be extreme stress though out life It could have been viral since they don't really know the cause of postpartum cardiomyopathy with they think its bacterial or viral Maybe it was a mixture who knows . My body has been through so much in every way symptoms began before any pregnancy but it seemed every pregnancy just exasperated more symptoms and the last one did me in. Mae ***** this probally just makes you more confused

Thanks everyone. And thank you alot Rachel those we all great ideas and it makes me think of it in a more positive way. I never heard of compression shorts....I'll have to look them up I love being trendy still at the age of 30 and I really didn't wanna wear compression stockings all summer long , I never even wore hoses besides to church and things like that so thats good to know. well thanks again mae

Hi I'm no expert and pretty new at this and I deal with the crazy scary symptoms. weight gain that quick is not too normal unless it has to do with meds or something. It can be a indicator of something else going on with kidneys/heart theres many possibilities I wouldn't freak out I'd go to a urgent clinic tomorrow morning because you know ER's just deal with people in immediate danger like right now! and they don't have time to sort things out they are not good at that. If the doctor you see has a clinic they refer their patients to on weekends that would be the best place.They have your records and information already and the results from tests come back quicker to your doc. Try to stay calm if you can:) Oh and to add I feel like I'm at deaths door daily Mae

Hi again, I am not on any meds yet , but that does kinda worry me because I'm super sensitive to all meds and I have tried to avoid them most of my life I guess I get tremors soon after I take meds and another concern is I have the high heart rate along with the low B/P when standing so I imagine treatment will be kinda tricky...I have been drinking lots of fluid and I already love salty foods. I have major pooling all over my body, have you used the compression hoses and how have they worked? I was just waiting till I see this specialist before I ran out to get them cause insurance will cover it with prescription. Its good to hear you doing pretty well, looking forward to getting to that recovery point. I sit to do household things (dishes,cooking) it seems to help conserve energy my children are 2 and 1 so I need plenty of energy. I think I'm dealing with CFS and fibromyagia on top of POTS who knows , hopefully me soon LOL Mae

Thanks Lina, do you see a difference in yourself from then and now if you don't mind me asking how sick were you and how did you cope? I'm interested in peoples journey dealing with this and maybe it will help in some sort of way and also being a mother how did you do it? Thanks again Mae

How long is it lasting? constantly for days?and is all the meds a good idea?

Hi, I live in Northwest Indiana and the temp today is 82, I feel the best on a cloudy 65 day. I have 2 small girls and I feel bad that they are not out in this warm weather playing and just being a kid like I was able to do. You know daily function is even hard in the house let alone outside in the sun and heat and STIMULATION. How do you all continue having a life , I've had the POTS symptoms for many years but it never prevented me from living until last year. I had a baby in March thinking I was anemic or some sort of hormonal problem and became more and more fatigue, and decided to have a yard-sale after being in the sun and heat I went in the house started having heart palps shortness of breath, felt like my body was to heavy to move and was very very pale. I had my husband call 911 and I went and layed in the ER for 9 hours they had no idea what was wrong I could barely talk I was so weak they ran test after test and I kept telling them I'm so thirsty they wouldn't give me anything to drink and finally released me. I went from doctor to doctor since that day almost weekly and finally the endocrine doctor said all my tests that he looked over are normal and this sounds like dysautonomia hes the one that checked my heart rate and B/P while standing and now I finally go to a ET cardio next Friday. Sorry I got off topic alittle this is all just unbelievable to me. What are my options really am I trapped in the house all summer??? do I have to watch out the window while my family does activities outside??? should I move to a cooler cloudy climate???? is this ever gonna get better or worse???? I choose to go more during the evening but that is when my kids go to bed ....its a struggle a big struggle. My husband just asked a few days ago would I go to a food show indoors with lots of vendors I said well how long will we have to walk, he said it would be a few hours to get to all the booths I said is there scooters ? He just looked at me and said no I said well you know by time I get the kids ready take them an hour away to the sitters then come back and walk just to get to the building I will be totally exhausted and after all that I have to drive an hour to get the kids and an hour back again (4hours of in the car) in the sun Tears filled my eyes I said I'm sorry I can't do it. I wanted to so bad I just wanted to force my body to do what I wanted it to do and feel like a normal person again and for a few minutes I tried to strategize and reality kicked in as soon as I stood up and felt all the symptoms as a whole, it depresses me at least once a day to know I have no choice no rights to this condition. I feel the effects on my whole family and it is really hard. I wonder if I'll ever be one of those people I see living a normal life I know if theres a possibility of me ever getting better I'll always be a changed woman it will never be the same, but will I be rid of this physical disability I pray everyday to have a chance to enjoy limitless days restriction free life as I pray for all of you also. Mae

I feel them everytime. Sometimes I skip beats along with shortness of breath, sometimes I have rapid beats and it goes right back to normal. Its really a weird feeling but it usually passes for me very quickly. I'm use to it now Mae

I'm also vit-d deficient, (17) and I have the sensitive to meds problem so I haven't taken it but twice. I think thats the least of my worries at the present moment but I have also read it can prevent alot of serious conditions in the future. I'm going to try a multivitamin so that may help with the vit-d who knows...I'm just tired of all the doctors I ask simple question to never know anything. I was always in the sun and drank plently of vit-d milk and other foods contain it so why would I be deficient? Mae

Hello, When I was 19 now (30) This one night maybe Easter to be exact, I had a very stress-filled weekend prior didn't eat to great didn't sleep to great and was very emotional ,crying anyway when I finally calmed down I began shaking throughout my body it was very visible and I got scared and went to the ER they said it was a Panic attack and gave me 1/2 a zanax and I felt like WHOA I didn't like it at all . And that shaking happened more and more but it usually happened in the middle of eating but eventually it stopped for years unless I took meds. Now I get it whenever I take medication any meds, I always was made to believe it was a panic attack , but now that I've seen some videos on youtube with tremors that makes more sense... Does anyone else have these episodes of tremors after taken medication? Mae*****

Hi, I'd like to know what study? We are all spread out all of the U.S and other countries with this mysterious problem and our doctors surely are not communicating amoungst each other. To get to the supposed Best doctors at MAYO you need money!!!!! And I was actually given a price of $3,000 for a consultation and a few blood tests ohhh yeah and a follow-up. Based on this video THE BEST IS CLUELESS I have a better chance with this website and hoping and praying that I'll magically improve. Or I'll be one of the ones that let them experiment on me yeah right, I think we have to get together and find out what we really have in common and maybe we may get the cause of this...You know I just read this happens to "mostly white women" maybe it is one of those government experiment that just went wrong, probally some toxin that we so happen to be exposed to and it all a BIG MYSTERY NOW. Why are we having such a hard time getting proper medical treatment in the 1st place I mean most of us went years with these symptoms right and after going to doctor after doctor not one thought Hmm let me see what your VITALS are when you stand . If this condition is such a mystery why not have one clinic ASK us questions and do the testing, and also its probally gonna get better with lots of water exercise, and time SOUNDS LIKE TOXINS TO ME??????Ok I'll stop before everyone thinks I have totally lost my mind. Mae

Hi, I have exactly what your describing Migraines with aura but the auras start 1st usually. I have had the aura without the pain a few times in life. Its very scary.... Mae

Hi, I also have the SUN problem and I don't drive but a few blocks away anymore . I have to wear sunglasses and if temp is above say 75 I get in and out of the sun as quick as I can, I keep the blinds closed on sunny days and keep a fan going most of the time. Getting the windows tinted is a MUST if you have to travel and you can't be fortunate enough to work around the sun. It a big adjustment I was a Floridan for about 7 years and tanned regularly and went in the tanning bed , now theres no way!!!!! Its one thing I miss the most one of those things people that don't have an illness like this take for granted everyday. Just to get ready and leave the house and not have to worry about is it TOO SUNNY is an miserable feeling, a big difference from waking up in the morning and looking forward to having a bright warm day to tan. On top of all the other bizarre symptoms this is probally my biggest one that affects me . The sun drains the life out of me and you know how many doctors I told that to???? about 24 and they looked at me so crazy like thats not possible, and they say what do I mean sunshine is healthy for you .... But as the majority of us know thats not the truth. Mae

Thanks to you too AJ , I see you both take heart meds doesn't that affect your B/P? I was worrying about that since I have the high heart rate along with the low B/P standing wish I just had one or the other LOL

Thanks Flop, yes thats what I was trying to say I've read so many opinions and nothings just straight out direct, but thanks for replying I ask alot of random questions here and everyones is so helpful. I know my husband is so tired of me talking about health problems so this is my outlet. Mae

Hey hey hey, It is common to have Low B/P upon standing with POTS or from what you all know is that another form of dysautonomia? When laying B/P is perfect 102/80 sitting 98/78 standing 80/60 I haven't had it tested for standing longer than them just taking it you know like after 5 or ten minutes so I don't know if it regulates itself or drops lower???.... Also does anyone have POTS with CFS, and could that be the cause of the drop in pressure? Mae

Hi, just to comment on the herbal supplements. I have tried chamomile tea and it was a drunken relaxing feeling, I also tried Kava Kava for my 1st anxiety feeling years back and it made my heart start making clicking and really weird palps and I was DX with MVP and I stopped taking them shortly after and 7 years later the few echo's I've had say I don't really have MVP so I really don't know how safe the herbal supplements are . So just a heads up based on my experience. And during my so called surges I get cool, if its really bad I'll put a very cold rag on my face and neck and thats suppose to decrease heart rate , and lay down it usually passes in a 1/2 hour or so sometimes abit longer depending on the cause, hormonal I have constant surges for days sometimes weeks. Mae

Hey all, Whenever I leave the house during the day I feel immediately over stimulated, starting with the daylight( especially on a sunny day) I get overheated, anxious, like everything is Too Bright, Too loud, Too fast, a feeling of detachment like I'm in a movie but I'm slow motion. Not to be too descriptive or revealing . back in my teens I smoked POT, I feel high all the time and I don't wanna be no more thats exactly how I feel HIGH and I can't stand it . By time my body starts adjusting from the stimulation I'm exhausted from my racing heart when I stand and the constant flight or flight feeling FOR no reason!!!! Does anyone related to this ???? I stay in most of the time when my curtains drawn and no bright lights and as calm as can be this is the only thing that seems to help... I use to be a sunbather, party girl, and was never bothered by anything now I'm like a deer caught in the headlights FROM LIFE. One thing wearing sunglass help, and staying cool I always have the fan on in the house and crack the window in the car (even in the winter I'd take coat off in the car and my hands would be ice cold) I just need to know Does anyone feel this or is it just Me ???? And brain fog can someone please explain that cause I feel like I have altimsers I'm 30. Mae thanks for listening sometimes I feel so scared cause I have no control on whats going on within my body

Hi, I know the feelings, I always take hot baths (no showers can't balance) and it makes me feel worse but it makes my skin look normal not blotchy until I stand and dry then I start turning purple in the legs and feet and toes swell . Anyway I was posting because I recently seen on a TV program about delayed thinking caused by excess adrenaline , so when I read this it all made more sense. autonomic dysfunction causes adrenaline to kinda go hay wire which makes perfectly good sense to have delayed responses to feelings. Maybe I'm caught in my own thought .... or someone knows what I'm saying sorry I didn't get much sleep for a few days Mae