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klcowley's Achievements


Newbie (1/14)



  1. I would like to know as well. Stumbled upon them a month or so ago and am really interested!
  2. Thanks for all the info. I knew about the botox, but really don't want to do that like NMPotsie said, it is expensive and painful. But the deoderant I will definitly check in to. I don't like the winter, but am learning that the heat is really hard on me. Must just learn to be patient and happy and do the best I can to deal with all of this. Thanks!
  3. I have many different symptoms of dysautonomia, like most of us, but the one that is making me crazy lately is the excessive sweating. I know some deal with no sweating at all, but I have too much! What can I do about it? I can't afford to crank my ac as much as I want, nor will it keep working if I do it too much. But in the desert I feel like I need to shower a couple times a day. Any advice would be appreciated!
  4. Thanks for all your replys. I googled numbness and migraines and came up with a lot, although I am not for sure that it is the cause. I have had my hormones checked and everything looks good (except my metanephrines that were really low - which the neuro said goes along with autonomic dysfunction) and no auto-immune diseases at all. I was taking a multivitamin up until yesterday when I switched to a b complex vitiman instead. I know I wasn't low on B vitamins, but people keep telling me to get more, so I upped it. Thanks for all your help!
  5. Hey there. I am still somewhat new to this and wondered if anyone else have the above symptoms too? I have been diagnosed with not specifically pots just dysautonomia and saw a neurologist last week. He said my numbness (arms, legs, hands, feet, chin, sometimes lips and tongue - all coming and going) is probably due to migraines. I have headaches often but rarely bad. I also have noticed my hair in the front getting thinner, and don't know if that could be part of all this too. Any input would be appreciated.
  6. Mine do that too, but it is more when I am going to sleep. Interesting. I don't know why!
  7. I am a newbie with all of this and was just diagnosed with dysautonomia. I have been on citalopram (celexa) for year because of post-partum depression. With having my last baby I am thinking of going off of it because I have gained a lot of weight while on it and it is really hard to get off with it. Plus extra weight is just making me feel worse and more tired. So my question is has citalopram really helped someone and do you think it would make my symptoms (which are not horrible right now) worse than they are? I can't get in to my doc for a while and he doesn't know a ton about dysautonomia anyway. I do not want to take midodrine which I have been prescribed because of the weird side effects and I cannot take florinef because I have a bicuspid valve and slightly enlarged aorta that florinef would only make worse. Thanks in advance.
  8. No my docs keep saying they don't want to do one. I will do a search for the may clinic. Thanks for that info. Any help on the normatenephrine issue would still be helpful though. Thanks!
  9. I am having the run around with doctors where I live. There is no one here that really understands autonomic dysfunction and I keep being told I am just a fainter. I really don't want to spend the money or time away from my kids to go to a mayo clinic doctor. Will they tell me anything else besides drink water, more salt, compression socks, lower stress, ect? Any info would be appreciated. I also found in some labs that I have extremely low levels of normetanephrine and metanephrine and no one can really tell me why or what to do? Anyone else have this issue?
  10. Hello. I have some symptoms that I was wondering if you could all help me out with. I have been to a cardiologist and had workups done many many times. Heart monitors the whole thing. Structurally my heart is working fine. I feel dizzy, light headed, shaky hands, nausea at night, fast heart rate, feeling like I am going to faint (have fainted a few times), chest pain, chest pressure, weakness - mostly in my legs, and feeling like my brain doesn't work. I have taken my blood pressure (as recommended by my cardiologist) and when sitting it is always the same. But I noticed when I stand it is much higher. Just this morning standing after about 20 minutes my stats were this (taken one after another): 108/69 with a pulse of 106 117/87 with a pulse of 106 Then after laying down for about 5 minutes my stats were this: 98/62 with a pulse of 53 91/60 with a pulse of 60. Do my symptoms/stats sound like pots? My cardiologist said no, but I know he doesn't understand dysautonomia as much as others do, because he mentioned that if I am having autonomic dysfunction than I might need to go somewhere else like the mayo clinic for some help because no one in my area knows what to do with it. Any input would be appreciated! Thank you!
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