Anoj

hey sue! long time no talk! i guess i'm feeling a little bit "buzzy." it's really hard to explain. altho i'm not sure if it's not becs of readjusting to my thyroid meds. it is nice to finally have SOMETHING that is helping me lose weight. i'm alarmed at the yeast, not becs it's that big of a deal but becs i can really notice changes in my body, and that's kind of unsettling. i mean, if it's causing that, is it causing anything else bigger? maybe this is just anxiety talking. from what i've read, the key is to drink lots of water. i'm not getting off of this diet quite yet, unless i hear something alarming. at this point, i now have 60 to lose, which is a big deal, because the number 80 has stuck in my head for so long. i think i'll cry if i get back to my normal weight. the only reason i gained was becs of zoloft!

Hi! It's been a long time since I've posted. My symptoms are doing ok for the most part, as long as I'm not overly active. Head dizziness and intolerance to medications are my biggest problems. I can't stand for a very long time, but I guess that is to be expected. My question is about the Atkins or low-carb diet, or any variation. Since I've gotten sick back in 2010, I've gained 80 lbs. and finally am in a place where I can and want to do something about it. I started a low-carb diet about 3 week ago and am definitely in ketosis. I'm having anxiety about this, though, because I've read controversial literature that says there can be negatives, such as organ damage and kidney stones. Right now I'm having a few side effects (a little nervous energy, and ... overgrowth of yeast, which I was very surprised about!) Apparently yeast feeds even more on ketones than it does sugar. I've also read that this diet can lower your blood pressure. Since I'm sensitive to EVERYTHING, I figured I'd come here and see if anyone has had any experience with this type of diet. Since late last year I've lost a total of 20 lbs. The first 10 I lost from upping my thyroid medicine, via my doctor. The second 10 has been from the low-carb diet. I've tried almost everything to lose this weight, and so far low-carb seems to be the only thing that's worked. My doc and I tried to raise the dose of my thyroid meds again, and I wasn't able to. Gave me extreme headache & dizziness, so I'm sticking to the dose I'm on, for now. I'm hoping to hear some good things about this because I'd really like to stay on, but, of course, I value the opinions and experiences of others with POTS since we are so different from the general, healthy population. Any feedback is welcomed and appreciated.

Also tested negative for sjogrens and my insurance does cover it

prozac has a longer half-life, so any effects should take longer.

FYI, i have read that the lipoic acid can cause thyroid medicine to not be as effective. i'm currently in the middle of dosage adjustments on thyroid, but i plan to take the alpha lipoic acid once i have a good baseline established and adjust thyroid meds accordingly.

Pretty basic question. I have severe dry eye - not sure how it's related to dysautonomia, but my symptoms started right before I got sick. My eye doc is recommending eye plugs. They go in your tear ducts and keep the tears from draining from your eyes and into your nasal cavity. Just wondering about anyone else's experiences. Thanks

that's terrible. i hope you get it sorted.

i am definitely not soliciting anything. i'm not affiliated with the organization. however, i don't see the harm in dysautonomia patients fighting to keep insurance coverage for testing. or at least being aware that this is happening. although i doubt writing letters to wellpoint's execs would make a bit of difference.

http://www.dysautonomiainternational.org/page.php?ID=166 Is this true? I have already send my protest emails. (Not that it would do much.)

thanks, alex, that was all very, very helpful. i have read on numerous sites that smoking can cause neuropathy becs of the vasoconstriction action, so i made the connection between vasoconstriction and midodrine. i recall someone on the forum saying before that they were concerned and/or had stopped midodrine becs of neuropathy. i have no idea what type of neuropathy i have. my endo prescribed neurontin as a stab in the dark. he had good intentions and was trying to help me, but it's not his area. i'll let you know what the neuro says. appt. is in several weeks.

Lately I have really been thinking about my neuropathy. I was diagnosed by a machine called a "pseudo scan." I have no idea what that is. The test was performed by my cardio, but he never followed up after telling me I had mild neuropathy. Fast forward about a year and a half later, and I am definitely exhibiting more signs of neuropathy. I am still pooling when I stand, and in the mornings, when I take my first steps out of bed, my feet feel incredibly tingly. Sometimes when I'm falling asleep, I even feel I'm exhibiting some signs of restless leg! I don't know if that is related to neuropathy. Anyway, I found a neurologist here in town who has some experience with POTS, so I decided to schedule appointment to discuss my neuropathy. I feel this is where I need to focus my attention right now. The only things I've read about neuropathy and POTS as far as treatments go is IVIG. I want to know if IVIG is the only treatment for this? It seems like to get IVIG you have to live in a certain area or be willing to travel. I'm not ready to travel for treatment. Are there any treatments for neuropathy that actually help repair the condition? One doctor wanted to put me on Neurontin, but I discovered that is for symptoms and doesn't repair the problem. I was also scheduled to have some type of nerve test done, but someone here mentioned that it was the wrong test (large fiber, as opposed to small fiber). I don't know if there is anything for small fiber testing in my area. I've also read about alpha lipoic acid and plan to take some, although I'm concerned about it interfering with my thyroid medicine because I read that it can mess that up. (I am in the process of increasing my Synthroid as we speak.) What I really want to know is if there is any real treatment or HOPE for neuropathy getting better. I am starting to believe that my POTS will not get better unless the neuropathy is addressed. Oh - another thing I am wondering about is vasoconstriction. I have read many places that smoking can contribute to neuropathy. I was a smoker before I got POTS, so I am suspicious. Apparently it is the constrictive action of nicotine that causes this. Also, a very important question - If constriction contributes to neuropathy, then SHOULD WE BE TAKING MIDODRINE? Midodrine helps me feel better, but I am concerned that I may be making my neuropathy worse! I plan to ask the neurologist all of these questions. The guy works with fibro patients and has an independent practice, so he seems pretty open-minded (knock on wood). Thanks in advance for your insight.

what is autoimmune autonomic ganglionopathy? does that just mean your neuropathy is autoimmune? who does the test for this. is it only autonomic centers like mayo? or do regular neuros test for this?

in 2005, i started running a low-grade fever after a bladder infection. it didn't go away. lasted about 2 years. it was a terrible time in my life. little did i know how much worse things would get in 2010 when i suddently got POTS. the fevers would come on, or at least get worse, at the same time every night. from around 6-9 p.m., the fever would feel at its worst. i went to 14 docs (different kinds), to try to figure out the cause, which no one ever did. eventually, the fever slowly and gradually went away. i never knew what caused it, but after getting POTS i suspect it was an autonomic dysfunction. fast forward, and now i am experiencing low-grade fevers again, also worse around that time of night. they are bothersome, but not nearly as bothersome as my other symptoms. everything else you wrote, i could have written myself. in fact, i came on here tonight to write a post about sweating. standing up is causing me a lot of sweating issues lately. but when i run the fever, i'm freezing cold. i wear a warm robe between 6-9 p.m. and after that crank the air to almost freezing, because after being cold goes away, i get hot. both feelings are very uncomfortable. heat and cold intolerance. i suspect my sweating is coming from the "hyper" reaction to blood pooling when standing. it's really aggravating. i will take a bath, be all clean, get up, and just from the simple activity of walking to the bedroom, getting pajamas out of my drawer and putting them on, i'm ALREADY SWEATING. i just cleaned myself, yet i'm wet from sweat. i am weaning off of my SSRI right now due to weight gain, and my dysautonomia is worse. it is very tempting to get back on, but i am determined to lose the 80 lbs i put on becs of it. i am so tired i barely feel like going anywhere. i am very inactive right now, which i know is not good for this disease. i am just writing to share my experiences and let you know what you are describing doesn't sound unusual or abnormal regarding dysautonomia at all.

so, what would be the best watch to monitor nighttime heart rate? is garmin the only brand that actually records the data?

btw, what would you guys call me? i pool and BP rises to compensate. my HR rises as well, but not by 30. after a certain amount of time, i get pre-syncope but not syncope, upon standing too long, and my vitals drop. i guess for me the proper term would be "orthostatic intolerance." that doesn't even come close to describing the severity or breadth of symptoms.

i would hate for this illness to have the word "fatigue" in it. the worst thing a doctor could ever write on my chart would be fatigue, or chronic fatigue because imo that is the kiss of blow-off from the medical community, and from what i hear will never get you SSDI benefits, no matter how disabled you are. with a syndrome, what we are describing is a cluster of symptoms or reaction. if fatigue is a symptom, then perhaps we could also add the words dizzzy, lightheaded or something else like "fat feet" to the mix, lol. because all of us are so different, this is why i prefer the term dysautonomia because it is a wide umbrella. that is just my personal preference. not sure what my doc truly thinks, because the most specific dx i could get from him was "pooling" and "deconditioning." HA. what does dysautonomia mean? it's a dysfunction. for example, there are times when my blood pressure is normal, yet i am symptomatic. LOTS of times. my husband can take his BP and it is within normal range. i can take mine, and mine is in normal range also. but i am sick, and he is not. there is something malfunctioning within my ANS, and that is not the case with him. yes, tachy/HR is something that can be measured. but can we measure other symptoms like lightheadedness (or cerebral hypoperfusion)? i would love to be able to prove how low in oxygen my brain is constantly, but something tells me even the most sophisticated test would never be able to truly measure that! plus, one person's ideal oxygen level may not be the same for another. measuring illnesses is so difficult. ask anyone with thyroid disease, and they will tell you their frustration with lab numbers vs. symptoms. the whole thing is frustrating! look at cancer, for example. it isn't called "cells overmultiplying." maybe we could come up with a totally random name to describe it, perhaps of latin origin. how about nervosum?

i agree with you, and that is evidenced by the fact that tachy is / was not every my main problem - fainting was. or, pre-syncope. my heart only races when i am in a severe crisis, about to faint. so, i'm not in the tachy when standing category. and, honestly, that hasn't happened in a while. (knock on wood) my main problem is lightheadedness, pooling, fatigue, sleep problems, and dizziness. imo, symptoms of "dysautonomia." the problem is the whole "syndrome" aspect of diagnosis. a syndrome is the end of the problem, not the beginning. what actually causes things would be more scientific and accurate, as i'm sure many of us would agree. i will post some more in the other thread about labels.

i am also on betaxolol and you are right about the selective property. i had shortness of breath when i tried other betas in the past (pre-POTS dx), but not with betaxolol.

it has been a long time since i've been active on this forum. the names of some active members have changed. so, i may be repeating things i've said earlier 1-2 yrs ago. i don't think the terminology actually matters. i prefer to use "dysautonomia" because the details of each illness may be different, but the overall illness is the same. i don't technically qualify for POTS becs my HR jumped 20 and not 30 for the TTT. however, i pool in my feet and my vitals get hyper before they drop and i get pre-syncope symptoms. pretty sure you couldn't call this NCS, either. i honestly don't know what my true diagnosis is, and my doc didn't label it, either, other than "pooling." and neuropathy. i do call myself hyper POTS, though, because i know i'm hyper and POTS is what people recognize most when referring to this illness. the postural part is just one of the details that is used to label the illness, but i think the illness needs a better name. i think what they do at autonomic centers is basically figure out the mechanism of how your body fails so that they can target medications better, and that is the reason for the labels. i have yet to figure out if people are really helped by any treatment, or if their illness simply runs its course and goes away. as for having symptoms while lying down, i think a lot of us go through that (see my sleep / nighttime incident thread). my first doc (well-meaning but not very experienced with this) told me to stay hydrated and lie down when i had a fainting episode. when i asked him what do to when i got a fainting spell in the middle of the night and was ALREADY LYING DOWN, he was stumped. lol. he had nothing to say at that point!

a little of both worlds for me. i feel worse standing and sitting in an upright position. at work, i lean my chair back as far as i can, and it's pretty low to the ground (reducing the length from the floor to my brain). i definitely feel better sitting with my legs up or curled beneath me (like sitting on the couch), but there are times when i am symptomatic no matter what i do, on bad days. if i sit, it's best not to sit all the way upright.

no, it is just like i am jolted out of sleep, feeling like my body is out of control, with internal tremors.

Did you get my reply re: histamine? Do you have mcas symptoms? i do have some symptoms, which i mentioned earlier - hives all over, if i don't take an antihistamine. i am not willing to part with my beta blocker, however. i talked to my doc about switching to clonidine and he said it was harder to take than a beta and would require more midodrine. i'm settling with the beta + antihistamine. i don't know of any docs in my area that dx or treat mast cell disorders.

thanks

well, last night's reading during my episode (almost nightly, i tell ya!) was 112/67 with HR of 57. again, i do not understand this! what is waking me up? why do i feel tremors? everything seems normal!

yeah, that totally makes sense. you are right, when i said normal it was higher than "sleep normal" in most cases, except for a few. and yes, the feeling of internal tremors *****. especially when it wakes you up and you have no idea where you are, what day it is, and it's dark, etc. i always panic, even though i have a good idea of what it is, and wake my husband up. the only thing i try to do is deep breathing to calm myself down and take my BP. it has been passing quickly, and i've been getting back to sleep pretty fast. except for the hospital trip a few months ago. i would love to see the research paper! thanks for mentioning that. i didn't know that. wow, POTS + alpha wave disturbance. interesting!