misstraci

Elsie or Jenny, did you ever try the dr recommendations by Rachel? any luck with other drs in atlanta, i'd love to hear about it. i am scheduled to see dr dan dan late july, that was his soonest appt.

Glad to hear everything went well medical wise and also the hot move!!! If you don't mind me asking; Where was the clot and how did you know you had it? Traci

I used to take sucralfate because I have a stomach ulcer and I found it difficult to take because of the timing. Like you say, it has to be taken an hour prior or two hours after food several times a day. This is part of the reason that I stopped taking. For your son, if he did breakfast with Florinef/midodrine and then 2 hours later did sucralfate then make sure lunch was at least an hour after that, eat/midodrine, two hours later sucralfate, hour later midodrine, etc. I don't know. its hard to plan all that out. I always want to know the reason you take a med a certain way. Like some antibiotics say do not eat with dairy, well, i wonder is it because it can make you sick at your stomach or the med doesn't absorb properly, etc. I take iron pills and vit c at the same time because the c helps the body absorb the iron.

Yeah, I think since smoe people veins/vessels don't contrict well, the compression acts as that artificial constiction like she said, prevents the pooling of blood in the legs there for aiming back upwards hopefully causing less symptoms. But i'm new to all this, this is just what i think.

Thank you!!

Hi. I ordered some stocking online and paid about $30 dollars. I got one of the more popular brands but i only got knee high length. They are VERY tight and I like them and sometimes I think I can tell I feel better standing but some days I might as well not have them on as I can't tell a difference. Good luck!

I hate to hear that GF is all the dr had to offer for you and sorry for all the symptoms and suffering that you are experiencing. I also feel like a ticking time bomb and the same thing you said, that it would take death before someone would actually want to help, if then. So, maybe GF will clear everything and make you feel like a new person, that would be wonderful. I really hope that it helps and that you get some relief!! Please keep your head up, I know that is so cliche' but you just have to keep pushing through and know that with the bad comes the good Hope to hear you're feeling better really soon.

redoctober..... what is Phenylephrine? does it do something similar to the body as the midodrine is supposed to do? thankful.... thank you. I'm not sure why she(dr) was so set on me getting off the cymbalta but it seemed like a really big deal to her that if i weren't depressed that there was no other reason to be on it. I had only been taking for about 3 1/2 weeks now and I can't really tell any sort of difference. Not even sure what the ssri's are supposed to do with pots. Do you know? but unless it takes a while to get into the system and begin to work, I don't think I've felt any change in my symptoms from it. Ok, i appreciate all the responses and feedback, not looking forward to the "tingly" sensation. Does it hurt or just prickle like your leg falls asleep?

Thank you guys for sharing your stories and advice with me. Those side effects sound icky but so is being lightheaded all day for me. Cymbalta..... I originally was prescribed cymbalta/klonopin by some random dr at an urgent care clinic who told me that i had post partum depression. I knew that was not true. However, after months and months of frustrating dr visits and no test results, i decided, what do i have to loose and tried taking them to see if they help me feel better. well, the next week turned out to be my tilt table test which confirmed pots and ncs. I had told the dr who performed the test about the cymbalta/klonopin and he told me to continue them until my follow up appointment because one was a vasoconstrictor and the other helps with the nervous system and that maybe i'd see some relief from one or both. My follow up was yesterday with primary care and when I was telling her everything she asked me was I depressed like five times and each time I would say no and she kept reiterating the fact that if i was not having depression that i did not need to be taking either prescription. she didn't answer me why but just said stop them and of course gave me directions to wean from them. But honestly, and i told her this, i couldn't tell anything from the cymbalta but the klonopin helped me tremendously. I can actually feel sort of human and drive and do things if i take that. She didn't seem too intrested and that is why i think i need to speak with someone who knows more about the condition. (lizababy) what causes the systolic BP to increase but the dyostolic to not increase?

Can someone please describe to me the pros/cons of midodrine and if you like it. I had my follow up appt yesterday with my primary care and it was obvious she didn't know about dysautonomia and until i can find a "specialist" or someone knowledgable, I had to follow up with her. She told me to stop the current cymbalta and klonopin and gave me a prescription for 5mg (3x/day) midodrine. I just wanted to hear opinions on this medication. Thank you guys!!!

Happy to hear you are getting back into the swing of things. That is good news! but sorry for the hard times you've been through. Hopefully you can continue no the muscle relaxants since it helps with some of your issues and I've never heard of the vibration therapy thing but it sounds interesting. Did you say you've already tried it out?

I'm glad you are using less meds now in addition to the natural supplements. That's great! My appointment went well yesterday but I don't think this primary care physcician (she is new to me, only saw her twice); I don't think she knows much about dysautonomia conditions. She took me off current medicines, one of which I told her was making me feel better and prescribed me something else which I'd like to ask about on here as I've seen lots of people take called midodrine. She had no suggestions for me as far as supplements or anything. I'm looking for a "specialist" or more informed person in my area. Thanks as always for your response!

Thank you sallysblooms, that is good. I will write down my symptoms and ask about supplements. Do you mean vitamins, herbs and such, similar to the prior post you were telling me about? natural supplements as opposed to prescriptions and medicines. I hope it goes well today. I will post later and say how it went. fingers crossed thanks

Today is my first follow up appointment since my tilt table test (4 wks ago) and confirmed POTS diagnosis. I have a follow up appointment with the primary care physcian who ordered the test today. What are some questions that I need and should ask her? Of course I just want to ask what's on my mind like "why do I feel like crap?" and "why can't anyone help me?" But seriously, are there any questions that I need to ask her as far as dysautonomia goes and so forth. Thank you for any suggestions and ideas, you are always greatly appreciated!

Thank you all for your responses. ramakentesh... I think i'm going to try eliminating the dairy as well as gluten and just give it a try. if you don't mind, could you explain to me what the difference betweem low and high pots flow are? redoctober... maybe someone else could help answer about carbs potentially boosting seratonin which leads to vasoconstiction, i'd love to know but i'm not sure myself. nikki, thank you, i need to combine squats and leg stregnthing work to some cardio, hopefully i will have no problems with this! JaneEyre9, that gives me motivation to want to try and feel better with eliminating some things.

JaneEyre9, thank you. sugar, dairy and high carb are my main squeeze bummer. I just need to try and do things right to get me feeling well. I appreciate your time and response!!!

Reen, thank you!

Trying to understand what exactly cerebral hypoperfusion is and I can't seem to find a definition. Do you know what this means? Thanks

I'm so happy your appointment went well. That is great news! I hope the combination of treatment he prescribes begins to work well for you. What dosage of klonopin are you on?

Hi Rain! As someone once said to me, sorry you have to be here but glad that you are! welcome. i hope you are able to find some solutions for your particular situation. As far as getting someone to understand, I'm not sure, I need that info as well because everyone with the exception of a few think I am a hypochondriac. I believe that material from the internet/books etc, to just show the person, "look it's real, it's in black and white here and I was confirmed to have it unfortunately". I don't know. As far as the pregnancy and the POTS getting worse during or after, I have to say from personal experience that if I didn't have it prior to pregnancy (because I may or may not have) it became what I would consider severe afterwards. I've been going through a cruddy time since last February when my son was born and that is just speaking for myself. I hope that it does not worsen for all cases and I'm sure that it doesn't but it just so happens that mine did. Also though, I had complications during and shortly after childbirth which put my body in stress and maybe THAT was what triggered my POTS and not the pregnancy itself. Hope you get the information you are looking for and feel better

Thank you for the information! I know you're right, that circulation is key, so just keep moving. As far as gluten goes, can you tell a difference from the time you stopped as opposed to when you stil ate it? Thank you for the tips and suggestions.

For dysautonomia conditions, I've been told that exercise is very helpful. Is there a specific type that you all do which you notice helps? Cardio, weight training, squats/calf exercises, etc? Also, if I can barely stand and function a lot of times, haha, how am I suppose to exercise?! Also, I have not read this or heard this anywhere but is there specific foods which you should and should not eat? Maybe some foods are not good for the autonomic nervous system or some foods irritate the pre-syncope troubles. Dairy? Gluten? Thank you for your advice!!

Hi welcome. I'm a little older, 27, with two kids, 5 and 1, but i understand about not being able to do all the things like park, etc. Sorry to hear you aren't feeling well. Hope things get better for you and vent away!!! That is what we're here for. Information and support!

Mine is probably a high low but its between 100/70 and 90/60.

Tennille, thank you for your response. I am so glad it also helps you feel better. So, are you still currently taking? I hope that when I go back to the dr that she does give me a prescription or something that does the same thing to my body as klonopin, as I swear it helps me feel half way human again. Where do you live? I bet here in Atlanta they don't just throw the benzo's at me too, I'm sure reluctance in giving them will be something I encounter, we'll see. I'm glad to hear you are feeling somewhat well. northerndarlene, I'm sorry. It's obvious you aren't addicted to them if 20 lasts an entire year. Those dr's are being silly. Can the one you originally got it from call it into the pharmacy so that you wouldn't have to drive the hours drive? I bet they probably want to SEE you in the office, i hate that. I wish for you that they realize you aren't some person trying to get drugs for "street" use or whatever and I hope you get some or something that helps. thanks guys. shoegal, i took valium once a long time ago "to calm me" before a procedure i had, i don't remember feeling any different, but it was a long time ago for me and pre-pots too.