lissy

Tachy,

I understand the feeling your explaining and actually years ago I lost alot of weight, but I had the stuffy nose and felt like throat was tooo small...was like 80 something lbs. I ended up blending my food to really stay alive. Since then, it only happens when I'm having a surge.

Ok my thought is ( and I'm far from a expert)

Possibly the swallowing and breathing along with the possible ingredients in food is cause this this whole effect which in turn is causing HR increase from over stimulation to the sympathetic or para) nervous system, I still get this once in awhile especially with Hot temp food or spicy foods or ice cream. I have not had allergy testing or taken anything for this . I always eat lay down and before I get too fatigue I've noticed I get more symptomatic with bizarre feelings if I don't. And when it happens I breath through my mouth since my nose is to stuffy, And I also get up and take breaks while eating.

Keep eating Hope this helped in some way

Lissy

#1. Pupils get larger

#2. Head feels lots of full pressure and more dizziness (also painful tightness in neck)

#3. Hand gets cold slightly mottled and very tingly

Lissy

Hi Carinara,

I have been through the same experience and my sugar was very low and off balanced when This all started for me . I made sure to eat things every few hours not many starchs and carbs (which I love) it took a few months to get it under control mine would start low 60-70's I'd eat then it would shoot up to 170's and drop again and I'd be left exstausted. That happens every once in awhile now.

I completely understand the security feeling when others are around when your feeling so bad. I have dealt with this condition raising my 2 young girls and husband is at work many hours, there have been many days I felt so scared and nervous laying all alone trembling and feeling like I was gonna die having so many symptoms. All I could do was pray and try to relax sometimes my daughters would cry and need me to do something (get juice or snack,or just attention) and it made me so guilty that I felt like I couldn't move. They have been days I am hungry and can't even prepare somethng to eat because it took everything I had to just make the kids something to eat and clean up there mess, and I'm so dizzy I just have to lay down.

I have experienced the GETTING use to my symptoms and feeling comfortable and WAM it starts all over again .So I know exactly what your talking about it will get better and try to relax when you have those surges I just turn on a fan point in in my direction lay down on my side and I really try to fall asleep because it seems to be gone when I wake and not as severe until night hits again and funtionable during the day unless its a really bad day. Like today I fed the kids lunch cleaned up and I had to just lay on the couch I felt so sick I put them in their room with the cartoons and fell asleep for about 30 minutes I woke up and feel slightly better . I am alone with my kids about 90% of the time I guess I just do the best I can to work through the feelings I wish I had someone to be there or take care of me my 3 year old does sometimes . God gives us what we can handle but sometimes I wish someone would reach out and help those of us that really need it:)

Lissy *you are not alone*

Hey all,

I'm having all the autonomic tests done 1st week of Jan. and its coming soon. I already got my dysautonomia DX now they just wanted to make the POTS DX official. Or see where the problem is coming from????

Having Blood volume hemodynamic

Qsart

and I thought it was another one but not listed on the paper.

I'm so nervous already

I just want it over with!

Lissy

Hello,

I have read this awhile back. You know I have blood pooling even when sitting its only goes away when I lay down. And also I had my aldostrone and renin check once but it was just sitting like a regular blood test would that make it inaccurate? This stuff is so crazy! I wish I didn't have to do all this research alone.

Lissy

One question did they use the epi-free anesthetic?

Also I have MVP and still take antibotics before dental work.

Lissy

Also hope you feel well soon:)

Lissy, lol, I know those 2 are SO smart. I'll bet they solve the POTS mystery before the Dr's do!

I think they may have a better chance:)

Lissy

Hi all.

Tachy, LOL yes that was easier to understand, I find it harder to understand what people write and sometimes even in verbal conversations since I got dysautonomia. Its sort of a hard obstacle to work around. I find myself trying to simplify everything around me or I become mentally exhausted along with the brain fog and fatigue. So its nothing personal:P I find humor in my own limitations.

And I was being serious about the MEDS thing because of someone has this sort of mental decline I'm interested in your meds is any have helped improve this issue.

Lissy

Tachy,

I really wanna know what kind of meds you take!!!! All of your posts are soooooo LOL whats the word " extravagant" actually Eric and yourself . LOL by time I read the 1st sentence I ask myself what is this even about , Thats exactly what I mean I think I am pretty intelligent and medically inclined but all these words if they are more than than a paragraph or two I lose interest and focus I have to read it like 10 times.

Lissy

WOW some of your posts make me feel so much better I get the disconnect feeling ,Memory Problems. I remember one time I was driving and forgot what side of the road to drive on it happened once and it really freaked me out! that was 7 years ago way before I knew anything about POTS I also forgot my name while filling out paperwork at an ER . I thought I had Alzheimer's at 20 something years old....

Lissy

Hello all,

I have a hard time telling people my condition because for so long with family no-one ever took my illness seriously kind of the same as how the doctors have treated most of us... Even after finding out what is wrong with me they still don't take it serious . I went to in-laws for thanksgiving and was talking to his other family members about childcare and normal things and my husband said " I need to get her some help shes really sick " and one person said " Your sick I said yes and she laughed and said whats wrong with you? I said I have a conditoin that causes high heart rate and blood pressure problems when I stand and I'm always extremelIy fatigue. She just smiled and laughed and everyone was just looking at me like it was a joke like how are you really sick . I mean who goes to CLeveland Clinic if there not ill???? I always feel like I have to prove my condition or feel ashamed because no-one gets it. I'm tired of talking about it no-one cares anyway.....besides you all that know how it feels. I wish I had something like a business card to just hand out with the desciption and symptoms and if anyone asks how am I doing I'll just hand'em that, I think I'll really do it.

One more thing when I go to Dept.Stores and ride those scooters I wish I had a flashing hat on my head explaining ITS MY RIGHT I need this scooter:P

Lissy

Have you been checked for Lupus? That was 1st thought when I read your post.

lissy and hope you get answers soon:)

Since there are 2 supposed different types of anxiety POTS anxiety and GAD is POTS anxiety only when standing? or when triggered by usual POTS triggers and who can tell this 2 anxiety types apart?

Lissy

Sorry about that!!!!! It kind of makes me think twice about going to the derma doc I have some suspious spots also...Don't give up

Lissy

I have posted before about being DX with Generalized Anxiety Disorder which was 6 years ago, I use to always go to the ER for I'd say the past 13 years with these anxiety feelings along with other symptoms they couldn't find a cause for they not once checked my heart rate upon standing they just said it was anxiety and told me to take an xanax which made me feel like I couldn't move talk or breathe and that was 1/2 a pill. They always gave me fluids and send me home until the next time I think they thought I was crazy and I thought they were clueless.

Ram its pretty interesting about the serotonin depletion when my anxiety(feelings started) they were severe shaking and everything but after having them for so many years they are mild compared to that and maybe if it was something getting burnt out that would make complete sense . And if thats what affects your mood and general sense of well being that would be a big clue for me. I feel numb and lack of emotions.

Lissy

Thanks for polling:)

Lissy

My husband struggled big time to be able to keep up with housework whenever I fell behind. And I'm not exactly a neat freak. Eventually he decided to find a woman who could clean up after herself and him. Oh well....

(((((pat on the back))))) I think I'm on the same track

Thank You,

I did find something online about swimmers ear I guess thats what it is??? my ent visit was normal also;)

thanks again

Lissy

Alot of times I take a bath and wash hair I get water in my ears and it is so so so throbbing painful afterwards!!!!!!!!Its killing me right now along with every other symptom , but this hurts so bad any input or suggestions besides plug my ears when i wash my hair

Lissy

Glad your getting more answers Have you had heavy metal testing? and if so what type of doc does that? Anyway good luck and hope you find all the answers to get better

Lissy

hey all,

In a way I believe since so many of us come here with this condition we should start doing our own research because look theres how many doctors are specializing in this and how many of them communicate and work together to get more in depth for causes and all the other important stuff. We all have more than one thing in common POTS is not the only thing we all share. Really doctors and researchers probally come to this site just to get more information I'm serious thou...They don't focus to much on this condition because its non-life threatening and I think It shouldn't be a syndrome most syndromes don't even have SIGNS just symptoms . And we all definitely have SIGNS ( tachycardia, OI, blood pooling<so on and so on) Maybe we need a foundation to demand more research and easier times with getting this condition being taken more seriously by Doctors and the government its actually a disability and thats probally one reason they call it a syndrome and not a disease because thats more disability money to hand out. But you can work around that depression/anxiety is a disability and you can get it for that and you know you all have that as one of your symptoms in your syndrome.

Lissy

lissy,

I'm so glad you posted this! I was just trying to explain last night to my brother that I feel like I'm watching my life from a bird's eye view. It is scary for me too. I don't really know why it happens- perhaps it's a side effect of lexapro- perhaps it's because I'm isolated 8 hours out of the day by myself (solitary confinement!!) until my mom gets home from work.. I don't know. Just know you aren't alone.

It's daily for me too

feel better

Maisie

When I was DX with those conditions I was on Lexapro also and it made me less physically limited at that time I didn't know I had POTS but It made me not care about anything and I was kinda SILLY everything was Hilarius to me, I felt so good emotionally I went up to max dose and then it didn't work any more so I went off of it.

Thanks all for responds.

Naomi-----were you DX with those disorders and if so were they before POTS DX? If so what did they say to do about it?

Maisie-----I am also isolated pretty much all day besides with my children ages 3 and 2 but I don't have much conversation with adults I think it makes me feel worse.

I am so glad in a way I'm not alone it is the most embarrassing symptom I have and I don't talk about it often but when I went to Clev.Clinic I told the doc I felt disoriented and detached from surroundings and she wasn't shocked or anything so I guess its normal, I'll find out more when I go back next month.

I have noticed its does get worse if I go outside in the brightness or if I'm standing very long or tooo tired but its there all the time.

Lissy

Sorry my post was so short lastnight I wasn't feeling well enough to get into detail. When I 1st started having these symptoms and actually went to a psychiatrist and explained how I felt he DX me with generalized anxiety disorder and dissociation disorder and of coarse depression. I told the doc its like looking at my hands I know they are my hands but they don't really seem like I'm real its like my life is a movie like a not reality feeling...I don't have a personality disorder I'm not schizophrenic or anything like that its such a weird feeling . If anyone has used marijuana its it feels similar to being high all the time along with all the physical symptoms . It is a scary feeling when I focus on it and I try not to. Like I'm losing my mind. I guess sometimes you can get so caught up into looking into your illness it can make you lose your mind , I don't know maybe something else is wrong I just wanted to know if someone else felt this way its hard to explain it to someone that is healthy and I really don't want to talk much about it because it sounds so crazy, and I know I'm not insane.

Lissy

Ram I will try the licorice candy hope it helps even if a\little

Also I'm not speaking of I don't feel myself as in ( my healthy self) Even if I was just sick I'd feel myself this is a different feeling .

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