lissy

Most of the time I feel just out of it if I really pay attention, most of the time I try to stay busy because it sends me into panicky feeling is this pretty common with anyone? Lissy

Sorry about what your going through...the taste can be from infection also medication depending on what they put you on. Fortunately I'm not the completely passing out potisy so I'm not sure about the MRI thing. I'd call your doctor and if you can if your very worried just go to the ER and they'll give a MRI probally, especially if your suspecting a stroke it matters how long you wait call ambulance if you can't drive. But call your doc 1st, because I don't know how many signs you even have for a stroke. Hope u have some answers and relief soon. Lissy

The worst for me is elevators and escalators and if I get off on a higher floor I really feel like the whole building is swaying and I get very sick. When I was pregnant I had alot of car motion sickness and as a child I had to lay down while riding in the back seat.

TearRose, I do have Brainfog if that is the word that describes whats happening to me everyday. It feels like my thinking ability is always clouded and delayed and I have noticed it is alot worse the more I stand or the later it gets during the day. If I lay down most of the day I can think clearer but then my body has a harder time regulating everything else and its more sensitive. I really feel like a learning disabled person I forget words or what I just did minutes prior , not long ago I was washing dishes and walked back to sit down in the living room and I had my trusty fan going like always so I couldn't hear the water running but my 3 year old came in the room an said something but I was not paying attention and she yelled Mommy the water is all over the floor...I jumped up and it had flooded the kitchen floor and just was pouring down the countertop like a waterfall. I do alot of things now that cause more work for myself . I wish I could do something about this symptom, it really makes me feel stupid and embarrassed. I use to be a very quick thinker and learner..... Lissy

Sorry to intrude I was wondering if this Cognitive problem goes away with treatment (what ever they prescribe for blood flow to the brain) and exactly what test determines lack of blood flow to brain? And lack of blood flow is causing slow damage right or is that just temporary? Lissy

Thanks gomindy

What type of Doc DX's EDS and things? Lissy

((((Thankful)))) hope you have a speedy departure from the hospital with a some good explanations. Lissy

Hi, I have noticed I have a very high pain threshold. On top of that it seems like my adrenaline seems to be lower when under pressure and goes higher at the wrong times. Like if you see a car accident or something traumatizing I seem to get calmer, like nothing can shock me....Unless its emotionally connected to me somehow. Hope your wrist is healing well. Lissy

Its so hard for me to have POTS and children and and just speaking from my own experience I got worse after pregnancy , my experience doesn't reflect on POTS the condition in itself but I am one of the few that have been affected negatively from having children. And I love my kids, but if I would have known I was going to become nearly nonfunctional I wouldn't of had any more after the 1st. And since I didn't get a DX until I had my last child I had no idea what was going on with me so I was not informed of any risks or inherited possibilities. Speaking to all thinking of having children I would just say go into thinking are you willing to risk a 50/50 chance you may get worse and be unable to give them the life you want them to have or to knowingly not have all the information as in *what exactly has caused your condition and is it genetic. Lissy

I'm intrested in this do you know if that is part of autonomic tests they usually perform? When I had my severe change of health it happend my 1st cycle after having my child and got worse each cycle untill almost all my days were affected. I was so positive it was hormonal I keep going back to the OB doc telling her something was wrong with my estrogen or something and she ran every test she had available with no luck. I also can't take BC because of clotting issues. I don't know what to do really I have been so sick for this past week and just started today and it affects me so badly and I don't even feel alive!!! all I wanna do is lay down and I have no appetite or thirst or anything. I lose like 5lbs every month because it makes me so ill

YES YES YES it happens every month sometimes right before, sometimes during, sometimes after, makes me worse and nonfunctional every single time! I thought something was wrong hormonal I even wanted to get a hysterectomy until I found out this is normal with POTS. Doc said increase meds during that time. Lissy

Hey all, I have not started any meds as of yet. OK last night BP was normal again its so bizarre 124/80 you know I'm wondering because I know about a week before I start my cycle I usually feel very bad and its almost that time and I have never checked my BP during this time except during the day. I wonder if that may be causing this or my BP is regulating itself somehow . Also when its this HIGH which is normal to a healthy person I have tightness in my neck muscles???? Could exhaustion increase BP or dehydration? And can you go from one type of POTS to another??? Lissy

thanks maisie, no I have not started it yet.

Right before I got this sick I moved into a house that actually had mice and I cleaned the place before we moved in with bleach but I didn't wear gloves or a mask like your suppose to because I was clueless and I just had to get rid of 2 more mice just last week at a new place I moved into YUCKKKKK!!!!!! I always wondered if that made me sick I haven't been tested for anything in regards to rodents but my doc would probally just say I don't have those tests available, like she said with heavy metal testing . What type of tests are available if anyone knows? And really I did get severely sick when I moved to the house with the mice (not PETS) Lissy

Hey all, Last night I was very exhausted and angry and when I stood I felt like I was floating when I walked. So i took BP while standing it was 128/87 and heart rate was 115 , this was standing 5 minutes at the most. anyway I have never had 120/ over anything ever and I felt terrible . Usually its 90's maybe 100 over 60 or 70 . Should that really make me feel worse or could my body just not be use to it that high? Curious because I'm suppose to be taking fludrocortisone and if that increases BP wouldn't that make me feel worse? Thanks Lissy

Hi, Sorry for your decline in health I have MVP and I was told its not serious either. Have they done a repeat echo? And are they checking other possibilties . I just know having 5 children myself I felt when the blood volume was building which gave me alot of symptoms , thats was before DX. I guess If I were you I would keep going to the OB and make sure you don't have anemia and things like that going on. This might just be like a POTS setback, there just so many things that can be going on. After my last baby I've stayed the same so I hope you get some clear medical answers soon. Keep your head up:) Lissy

Well my eyes are full of tears because I have told about 15 doctors"MY depression has nothing to do with my illness and actually I was depressed before I got sick and NOW I"M REALLY DEPRESSED BECAUSE I ALWAYS HAVE TO PROVE SOMETHING IS WRONG and they put in in my medical records that I was VERY FRUSTRATED and on edge with finding out my medical problem. LOL I have also told doctors what would you do if I was one of your family members ???? not look for the answers....it leaves them speechless. Let me first say I am not suicidal so no-one worry I have had many days where I think: GOD I can't do this anymore , so Erika I know exactly what your saying. Still after having this almost 2 years I think about that at least every other day I'd do anything to have ME back and I always think about those around us in the world that destroy their bodies with drugs and all that , and it makes me see if I ever do get better I will have to BEST life and it will be so much more fulfilling because now I have new eyes. And with this new eyes I guess God had to take something away but I'd rather be able to see life is this different light to teach anyone including my kids what the real meaning of life is. Now you got me crying I try to hold back my true feelings alot because its a harsh reality but its life. Lissy

Good points Prettyinpink . I pretty much don't want to waste my life either and I definitely don't wanna set my health back in noway but have realized no matter what I do this condition has a mind of its own.. I'd like to know how have you handled the meds ??? I've been scared to death to try them. I'm SOOOOO sensitive to everything and I'll never know unless I try I just can't bring myself pass the fear. Lissy

Sorry for what your dealing with...I have a few questions did they DX with Dysautonomia and also POTS or is that one DX? Secondly how long have you been ill ?( if it just began I can relate to the emotional instability and I had alot of anxiety to start with that would just happen with no trigger just spontaneously but it has calmed down alot. I was in that state for a few months and it gradually got weaker. I have small children that I take care of 24/7 and I can't do much with them either , You have to try to have a positive outlook at least your still here ....you know what I'm saying.About the wife well sorry to say "through sickness and health" people don't seem to take to seriously I guess. I understand the strain chronic illness puts on relationships but when the relationship starts affecting your health you have to keep your pride and tell yourself and maybe her somethings aren't meant to be. Don't let someone drag you down this condition is enough to deal with. *****Unless she's willing to seek help. Lissy

Thanks Jana , I know when all this started they suspected lupus but only one abnormal blood test and that fixed itself by time I was suppose to retest. I guess this is just a long process... I have chronic pain only in my shoulders like muscle pain and its daily but no other pain so far. Is there a autoimmune POTS all by itself? Lissy

thanks for response it made alot of sense to me:) and I was curious how long have you been with POTS and how long did it take to see improvement with the fatigue and brainfog ??? Lissy

No seriously I'm being a bit silly its sooooo late brainfog is terrible!! Maybe your chemically sensitive or allergic.Honestly I am a smoker and I find if I do smoke alot I get alot worse I really have to break up with this badddd boyfriend Lissy

I am a smoker and if it does aggravate symptoms maybe thats one of my problems Lissy

ohh I see, well would you have privacy at your families home? And maybe if you did decide to move there you can set up the things you are capable of doing ahead of time and share as much information about your illness with them. I have been in a similar situation and I lived in my parents unfinished basement and they were not cleaners either, but I had to look at the positive side and got comfort just really being around people that have known me all my life and no matter how supportive they may not be you will still find comfort especially if you have to deal with the extreme symptoms we sometimes have to deal with. Lissy