misstraci

oh wonderful, thank you!!

hello everyone. I'd like to hear about lexapro and who takes it/took it and if you did and don't anymore, why not? What kind of side effects did you have? nausea, weight gain, etc. I've heard it causes awful of both those symptoms. Did it help with your POTS at all? Thank you

DBP..... I hope you're feeling better coming off the lexapro. and I hope someone else can answer those other questions that you had because I don't know. dani, glad to hear that you didn't have all the bad effects I've been hearing about. naomi.... northerndarlene... thank you guys for your responses.

I'm sorry Brynne! I know the feelings you're having and going through, except instead of not being able to attend school, I've been having trouble attneding work. I know it's different, but it is similar. I have good and bad days, however the good are like 10% and the bad 90%. You never know until you wake up and then even then, each moment and hour can change at the drop of a hat. My heart does go out to you because like you say, you are in one of the best times of your life. I am 27 and instead of being able to enjoy my young adult life and my baby like others my age are doing, i'm having to have help with the miniscule things and hoping i can get through each day, etc. so, i wish I could help you or give awesome advice but I guess i'm moreso saying i can relate and don't feel alone because we understand you and part of what it's like. and i do have all those feelings you have and to deal, i just remind myself that yes things suck for me but at the same time, they could always be worse! Also, suround myself with things and people I love

good for you!!! you spoke up and I admire that. I've always been timid and inferior around doctors but I know I shouldn't be. I'm happy and I hope he finds some answers for you.

Hey, thanks. And no, it was brain only this time. what does the neck one check for, do you know? Several, several months back when this all began, i had a brain mri as well as an internal auditory canal (IAC) mri and both at the time came back fine as well. But i swear, I feel awful and it just has to be something. not trying to wish nothing bad upon myself, but you don't feel miserable for no reason at all.

I had an MRI done last week because of the head pressure, discomfort, and weirdness I've been feeling. It is the left back side of my head as well as in front of my left ear on my face feels kind of weird and numb. The nurse called to say the test came back negative and I assume that means nothing bad is going on. I just want to know what all an MRI of the brain checks for? I know it checks for tumors but what else? More specifically, would it show anything stroke related or blood clots? Thanks Traci

yuliya.... I was prescribed midodrine at my last appointment as well but i haven't even filled the prescription because I feel the same way as you do. I am concerned because I think my BP is not as low as others who take these medicines. I'm concerned that it will raise my pressure too high and then instead of low, I'll be dealing with high and new issues. my average is about 100/65 , give or take 10 on each side.

casper: Thank you and I'll cross mine for you as well!! I hope you're right about pregnancy induced or sudden onset leading to a better chance of recovery. For some reason, I've always thought it was the opposite, that I have less of a chance of getting well. I hope you are the correct one I found out I had POTS about 6-8 weeks ago (officially diagnosed) but it started in October of 2010. How long have you had it?

I think my dysautonomia developed because of my pregnancy or post pregnancy complications. I had a daughter when I was 21 and it was a perfect experience. At 26 it was a little less perfect. I had a complicated delivery that lasted a long time and put stress on my body/heart. I lost a substantial amount of blood and required several transfusions while in the hospital. I came home and on two seperate occasions hemorraghed really badly. It wasn't until the second ER visist that it was discovered I had retained placenta. I had surgery in April and in October, it was like someone flipped a switch and I became very ill one day and have not been the same since. I know the pregnancy or stress on my body is to blame. But like everyone says, those babies are worth it!!! I wouldn't redo it for anything.

toddm1960..... I like you!!!

thankful.... haha, i knew what you meant!! way before POTS diagnosis my cardiologist suggested I get a sleep study but i never did because I thought how could a sleep disorder be causing all these awful feelings that i feel during the day. Well, maybe I'll look into now. thanks dani..... I'm sorry. It stinks, I know!!! so, did you have dysautonomia prior to pregnancy or did yours develop because of pregnancy? rockiesgirl.... that is very true about the meds. I always forget that different medicines can help certain things but at the same time cause other things to happen to the body. I'm not currently on any medicines personally, so, I don't know.

Thank you guys for explaining it!

thankful.... do you think never getting into the deep sleep phase indicates something bad like a medical condition or anything? i'll ask next time i have an appointment. I haven't slept well for a little over two years now. At first I blamed it on being pregnant and uncomfortable and all that, THEN there was the newborn and baby and now he is 15 months and finally beginning to sleep most nights but me on the other hand, i wake up a lot and still can't seem to get a good nights rest. I wonder if my body has become accustomed to the waking up every few hours or what and in addition, those dreams/nightmares that have increased for me as well.

Thank you all for sharing your experiences!!! Imt033167.....I'm sorry you got injured recently. I hope you feel better and that your BP goes back down from the high numbers you mentioned. I bet it was from the change in meds maybe. Is your pace maker put in for dysautonomia or another reason? I just have a hard time trying to put into words how I feel and especially right before I feel like I'm going to pass out. A weird rush sensation enthrals my whole body and then it feels like my heart is sinking away and has no blood and is going to stop. My head feels awful like it's a balloon and it's going to float away. I really can't put it into words, it's the worst feelings

I would also like to know which autoimmune disorders are the cause or correlated with POTS/ dysautonomia.? Naomi..... what does the test you had ran "Standing and laying norepinephrine, epinephrine and dopamine and Angiotensin II (2)", what do those specifically decide or show? Thanks Traci

I want to know what feelings and sensations that others feel before the pass out or have a near pass out episode? Do you tend to feel a feeling in your head or chest or both? I get a weird sensation in my chest and sometimes in my head as well. I wanted to compare to others. THanks

That is interesting rach73. I don't have nightmares really but I've noticed that everytime I sleep now that I dream. Everytime I close my eyes, I have a dream whether it's a 20min nap or during the night.

This sounds weird, but both my big toes are numb, it doesn't come and go, it's always there and I told my doctor recently and she has no idea. Neither do I.

I'm so sorry to hear what you are going through both with POTS, your husband, and now at your moms. Why won't she give them water/drinks? How old are they, if one of the older ones can manage to get a glass and share with the others. I think a good option would be to hire a high school or college kid (because honest but true, that would be good an cheap) and just like they do "babysitting", have this young person just help out a little, pay them to do your grocery shopping or help at the house for a little bit. I have two kids and it's rough but luckily I have a lot of help and so far, they don't mind helping out. We pay an outrageous amount for two kids to go to daycare. Let's say one kid costs 200/week, well for half that, say 100/ week have someone come to your home several hours a day, tidy up/laundry, do little chores, help kids with homework/snacks, etc.

I know everyone is giving there own experience and knowledge to your questions so, I will too. I wish I had answers for you that I could back up with medical findings, etc. 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.It is true that POTS has little to do with blood pressure, meaning, you can still have POTS and not low blood pressure. You can have POTS and have normal and high blood pressure as well. 2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?Every time is different, so, no not necessarily by 30 each time and I'm not certain about the length of time part. 3. Does your heart rate increase when you eat? By alot?I've never measured my HR while eating or right after eating, however, if I don't eat or drink consistantly, my heart rate will be elevated. the other day (sitting) I was averaging a HR of 100 and then I drank some more and ate a snack and it went back down a little. 4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFULYES, words can not give meaning or description to how deathly ill I feel at times, yet, my vitals look perfect for example almost everytime I go to the emergency room..... go figure, if your vitals and bloodwork look half way decent, they send you on your way and let someone else deal with you. so annoying. 5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?I'm not sure. 6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??Yes!! 8. Tachycardia - how high is too high?I don't know the technical answer but I would think it depends on teh person and their age and body make up. I am 27, 110lbs and my taarget HR is about 130 (i think) and I think if I were to go higher than that it could potentially be dangerous for me personally. But if a male, 200lbs, his ranges are different and same thing for a child and adolescents tend to be more elevated to begin with.

Yes, I guess they had not done the studies to show withdraw and now that they know, it's best to taper off but still, do you think i should be experieincing this? I'nm sorry that yours lasted an entire month. What were your main symptoms if you don't mind me asking? Thanks for the good luck, I may need it

I've been taken off cymbalta and given a "weaning" schedule of one pill every other day for a week, then every two day the next week and then every three days the next week. I was only on it for three weeks to begin with and now i'm in week 1 or 2 of coming off of it but I'm feeling weird and awful. I'm having weird dreams and nightmares ever night and this crazy feeling in my head that I can only describe as "spazzing out" kind of like my head is going to have a seizure (although i've never had one, so, not sure what it feels like). My question is: What did it feel like to come off an anti-depressant? and how long did that last before you felt better? Like I said, I was only on the medicine three weeks, so, I'm not sure it had time to affect me in such a way but maybe it's a coincidence that I am having these weird symptoms all of a sudden. Thanks as always for any input. Have a good rest of the week.

Thank you for sharing, I like your designs!!!!

I'm new since you've been away more than likely. I just recently was diagnosed with POTS. I ma happy to hear that you are doing well for the most part!! Sorry about your daughter, but like you say, if she's been around her family who has the condition, at least she's knowledgable about things to do to improve her well being. POTS shirt? Where do we get pots shirts... did you guys make them yourselves? Have a wonderful week