Anoj

i have problems with B vitamins too. not sure which ones.

this is so heart-warming. i feel the same way about my boy, who is usually very helpful and sensitive to his poor mom.

thank you both for responding. so, maybe less than a quarter of a dose? wow. my BP was average/normal while taking it. 117/69. i think my symptoms are more NCS than POTS, so i'm not sure this is even going to work. i think most of my body systems are depressed. the theory behind getting on this was that apparently the body's adrenal system is what causes the BP to be so low ... so hopefully counteracting the initial adrenal response would cause the body not to push the BP so low? does that make sense? yet, i don't regularly get true tachy. i just have heart palps all the time. and, i'm not sure what's up with that shaky/fainty feeling i get from movement or stimulation. i once fainted during the previews in a movie theater, from the sound alone. my docs don't understand it. i got my hopes up for trying something new, but i'm afraid this might not work. i guess i wanted to know how long to keep trying. i really wish i could afford to quit working to allow myself the time/freedom i need to take care of myself. it's hard to hold down a job and deal with all of this. yet, i suppose i'm just lucky i have income. i took FMLA and went to physical therapy last year, and it worked wonders! but at this point my job is fed up with me, so i'm afraid to take off again. when i tried explaining this to my doc, i think he thought i was offering excuses, but right now i feel like i'm living to work and have no energy for anything else (fun, exercise, etc.)

this was a great post. thank you so much.

Hello, I am relatively new here. My summary is that I was dx with dysautonomia in the summer of 2010. Hospitalized Nov. 2010 when I crashed. I am taking Midodrine, Florinef and Zoloft. I had made a lot of improvement within the past year; however, I keep having setbacks and ending up bedridden/houseridden again, for months at a time. My cardiologist is actually pretty good. He recently sent me to an electrophysiologist who recommended I take a beta blocker. I don't know what kind of dysautonomia or POTS I have. Not even sure I technically have POTS, although I do occasionally get tachy and have heart palpitations constantly. I had taken a beta blocker before the hospitalization/crash and experienced shortness of breath, so I discontinued at that time. One thing I did notice was that it cut out the palpitations. Now, I would really like to try this again. But, unfortunately I took only a quarter of a dose 2 days ago and was so tired I couldn't find the energy to even move about the house. My question is - does the crippling fatigue from beta blockers go away? Does your body eventually get used to it? It seemed to make my condition worse. I was definitely dizzier and weaker. It felt like I had less blood flow to my brain. On the upside, I had minimal heart palps and didn't feel like I was going to "lose it" with small movements/motion. (I often can't handle the vibrations of the parking garage at work, or walk too fast without feeling faint - I am assuming this is a classic POTS symptom?) So, is it worth trying to continue, even though it's making me feel worse, in the hopes of some payoff eventually? Since my crash, I have been much more sensitive to medication! Another question - he put me on Kerlone (Betaxolol). I haven't seen that a lot in relation to this illness, so I was wondering if there is a preferred beta blocker that people take? I looked this one up, and it seems that the effect is more narrow (heart/kidneys only) as opposed to whole body. What do you guys think about this drug? Also, I'm wondering if upping my Midodrine dosage would maybe counteract the fatigue from the beta blocker? I also have concerns about the beta blocker becs I am hypothyroid and take Synthroid. I would probably need to adjust my Synthroid dosage, which I am not looking forward to because I am VERY sensitive to medications that have any stimulant effect whatsoever (makes me dizzier/tired, not hyper). If I start messing around with my medications/dosages again, I will probably have to take FMLA again from my job. Long story for another thread, but I've been clinging to my job by my fingernails for the past year. Thank you in advance for listening and/or responding.

i have the same thing. seems to happen at night when i'm relaxing/getting ready for bed. i hate getting asked the question whether i'm anxious. no, quite the opposite. i used to get horrifying fainting spells in the middle of the night- that would wake me from my sleep! this is when i got diagnosed. it was also pre-crash/hospitalization.

yes indeed. i was also diagnosed with interstitial cystitis. this was several years ago, before the dysautonomia.

For some people stimulants do the opposite. Like for example for people who have ADHD and are usually in overdrive all the time - one thing that calms them down is a stimulant. It ups the dopamine levels. Coffee is something they tell Parkinson's people to drink because it helps them to tame down the tremors and the overdrive symptoms in their bodies. Do you find the same effect with walnuts? They are also high in dopamine properties. interesting ... i knew about the theory with ADD. i never had a problem with caffeine before i had dysautonomia. my doctor was going to put me on wellbutrin to counteract the weight gain from zoloft, but i couldn't take it becs it has a stimulant effect. i am so frustrated! i also really would like to up the synthroid, but it's just too hard.

thanks for the warm welcome. you've all pretty much confirmed what i've been thinking - that it's not worth risking my health to travel when i'm getting treated properly anyway. i would hate to get on a plane and freak out or be bedridden for the rest of the year! i do feel lucky that i have a doctor who is somewhat knowledgeable and willing to work with me. i think i ruined my last visit with him by crying, however. i was upset and he seemed to brush me off as needing psychological help. but generally he has been good. i can't seem to shake the weight gain from the SSRI i'm on. i used to be 145 (for yeaaars). now i'm 220. it's very upsetting. that's why i was crying. i think he thought it was about the fainting. oh dear.

wow, maiysa, sorry to hear about your troubles. i have tried armour in the past and didn't find it any better than synthroid. i should have been more specific - any stimulant seems to have the opposite effect - i get tired, dizzy, slow, can't function, no cognitive abilities, etc. i still can't figure that one out! any insight would be fantastic! i can't even handle decaf tea, as there is still a small percentage of caffeine in it.

this is very interesting to me, as i was diagnosed with hashi's yeeaars ago, before the dysautonomia. my antibodies were way high, and my other values were considered "normal." i am on synthroid but only the lowest dose. i struggle with anything that has a stimulant effect, so i have been unable to increase my dosage! does anyone else have this sort of problem, very symptomatic with stimulants of any kind, including coffee? recently my doctors wanted to increase my dose of synthroid because i broke out in a rash/hives, and they related it to my low-functioning thyroid. i couldn't even take the dose up to .5 mcg. i ended up dizzier and almost fainted in the mall. had to be taken out in a wheelchair by security.

I don't live near one of the major diagnostic centers (vanderbilt, cleveland, mayo), but I was lucky enough to have a cardiologist diagnose me with "dysautonomic syndrome." i suffered fainting spells and suddenly was unable to function or walk. he prescribed midodrine, florinef and zoloft, which i am on now. the combination seems to be the best i can get at the moment. he doesn't know how to better help me and agreed that it would be best for me to see a specialist out of state. he also said that he couldn't differentiate the different kinds of "dysautonomic syndrome" for me but that whether it be POTS, NCS, etc., the result is still the same (fainting, lack of function, slow/fast heart, etc.) after researching, i am comfortable saying that i have some form of "dysautonomia" with varying symptoms. fainting, lightheaded, dizzy, fatigued, occasional tachycardia, but only right before a faint, not in general. my question is, does it really matter whether i get a proper diagnosis at one of the specialty centers? what more info could they tell me, and what other treatments would i be able to get? my doctors are pretty much willing to give anything a try. for example, ritalin (which i couldn't tolerate). i guess i'm trying to gauge whether it would be worth a trip to go somewhere. let me add that i can barely travel AT ALL. even a trip across town in a car can leave me bedridden for days/weeks. i have taken 3 two-hour trips in the past 15 months, and could barely get to my destination without fainting, then being completely fatigued for weeks afterward. i'm absolutely terrified to get on a plane!!! something about motion - particularly speed - is intolerable for me. a lot of the terminology you guys are using on the board is frankly over my head. i just haven't had the testing that many of you have had done, but i feel like i belong here because this is what i have. i would love to hear your feedback. i am going for a checkup at the doc tomorrow, but i'm sure it will be a status quo type of meeting. thank you.

hello, i am very new here. i have always been fatigued and needed lots of sleep and naps. several years ago before a shower, i fainted, but it wasn't a big deal. i started to notice that i could not tolerate drugs that i normally could, especially pain medicine after a few minor surgeries. after a horrible fainting episode, i had to bear it and take advil after getting my wisdom teeth out. i was a very, very busy person before this happened. my problems started as i was weaning off of an SSRI (zoloft). i went through the normal dizziness/electric zaps/withdrawal. i noticed that i could not tolerate caffeine or alcohol at that time. there were a few very terrifying episodes of fainting spells in the middle of the night that awoke me from my sleep. i went to see a cardio becs i was having heart palpitations, too. he gave me the tilt table and diagnosed me with "dysautonomic syndrome." told me to drink lots of fluid, eat salt and avoid alcohol, so i did that. about 3 months later, i went out and drank a few beers (about 3). nothing crazy. then i had the mother of all fainting spells, ended up hospitalized and haven't been the same since. that was 15 months ago.

this is my 2nd post here. i am not sure how people with this illness are able to travel! i have such a hard time in the car. i begin to faint after about 20-30 minutes. it is better if we go slower, so on the interstate we try to keep it around 55 instead of 70. i have only taken an hour-long car ride twice in the past 15 months since this all began. i was diagnosed with "dysautonomic syndrome" by my cardiologist. i would like to go to vanderbilt, but i don't know how i would get there. i feel it would be too dangerous.

first post ... hello! i am going through a very bad problem with my job right now where they have told me taking FMLA is in my "best interest." i have been successfully working from home, but they do not like it. i believe i am covered by ADA (reasonable accommodation), but they are bullying me. i'm worried and stressed about this. when i'm there they make me feel terrible .... constantly nitpicking and criticizing my work while outwardly praising other employees. it's very toxic for me. i'm weighing the idea of fighting for my job vs. applying for FMLA/STD. sometimes i just want to give up on the job. discrimination is a terrible thing. i feel that i'm as important to them as a piece of paper to throw in the trashcan.