lissy

I am sorry I've been complaining a lot lately about bitter taste in mouth & nausea, strep throat, sinus inf etc. I've had a temp for a couple days & still haven't eaten much the last 7 days & with hypoglycemia that can be dangerous. I got up this a.m. & tried to fix me some toast & coffee & blacked out the 3rd time. First 2 times I made it to the table but last time I woke up on the floor now I have a headache. I must have sweated a lot because my table had wet spots on it & the kitchen looked like a war zone. I had turned the syrup over & it run all over the cabinet, my french toast was burned to a crisp & I'm about to pass out again. I guess this is gross but I knew I had to have food so I run my finger thru the syrup on the cabinet as I started going down again. I happened to see a slice of pear left from last night & grabbed it. This was like a horror movie as I was going thru it. I don't know how much of that was dysautonomia added to a temp. I couldn't call 911 because I couldn't get to the phone & if I had they couldn't have gotten in the house. The worst part is I finally found what might be causing the bitter taste. Someone told me that is asymptom of a stroke. So here I sit no neurologist, don't feel like driving & if I did wouldn't know where to go & everyone out of town at work. Do you all have MRI's after you pass out & hit your head? This just gets better & better. Thanks again.

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

A geneticist can diagnose EDS.

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

vanderbilt are currently studying whether estrogen has an impact on this apparent cycle in many patients. Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation.

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

I HATE hearing this when i ask my doc how he long til he thinks (insert symptom) will improve and he always says he can't predict. While I hate hearing it, I've found it to be very true. Everyone with POTS is so different and is affected differently by medicines, exercise, diet changes, etc thats it impossible to know if or how much a symptom will improve. I've learned that it doesn't mean to give up hope that my symptoms will improve but rather to enjoy life as best as I can at the level I'm at because I don't want to waste my life waiting for an improvement that may never come. I still exercise and try new meds all the time but, I try not to lay around thinking once my fatigue is better then I'll call my friend because i don't want life to pass me by. It doesn't mean I can do everything but i try to do what i can and limit my moping lol.

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

My doctor believes that auto-immune diseases tend to bring on other auto-immune problems, and that's been the case for me so far. It takes time, and when new symptoms show up, you can have them tested. One belief is that if you have dysautonomia, you also probably have CFS and a possibility of developing fibromyalgia, too. I also have interstitial cystitis, and a chronic pain issue. My kidney function is low due to poor blood perfusion. I had to have my gallbladder out. I have ischemic areas (an abnormal amount) in my brain due to lack of blood flow - hence, 'brain fog'. But usually you don't find these things out immediately...they can develop over time, and perhaps you won't even get another illness. There are people on the boards like that, too.

Good luck!

Jana

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

I can sympathize with you Lissy. When I first got sick and then finally got a POTS dx, I was convinced that it was not just POTS alone ? that there had to be something else wrong to be causing all these symptoms. And then to have docs kinda dismiss you, write a script and send you on your way was just amazing. Once an ER doc (who was looking up POTS on his computer) was asking me about the different docs/tests/meds I was on and was getting so confused. Finally he questioned that if all the docs I see were like players on a football team, then who was the head coach . . . who was in charge of coordinating everything and developing the plan? And I said ?Me!?

I finally got in with a great POTS doc who explained a lot. Said although I?ve got touches of CFS, NCS, NMH, that it?s easiest just to classify them all under the POTS umbrella. He said he thought I was one of the ones who will never know the hows/whys as to how I got POTS and I could pursue more testing (of which I did numerous other tests) or try and come to terms with it and try to develop a treatment and lifestyle plan.

In the beginning there were days and weeks when I had extreme fatigue and constant brain fog but as I?ve been getting better, those symptoms seemed to have improved. I still get different symptoms from time to time and I guess you could classify them as ?flares? but after dealing with this for several years I just think of it as having some days worse than most (or some parts of the day worse than others). Hang in there!

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

Sneaking in on an older post....

I'm suspecting hypothyroid and curious if just TSH and T-4 would detect it? or detect something if it was autoimmune with those basic tests?

Thanks so much I have a follow-up on Monday with endocrine doc and wanted to get this specif information so I don't just go into with no knowledge.

I know my TSH 8 months ago was 1.87 and the endo doc was willing to treat but i was in the middle of POTS DX so I waited, so who knows what its up to now....I'll know soon

Lissy