Tommyhoney

Before we moved north, not quite a year ago, I needed IV's a couple times a month, no matter how much salt I loaded, took florinef, drank gallons of gatorade and water, my body just wouldn't hold the fluids. So I guess I didn't make myself clear on original post. I think I was just looking for a reminder of exactly why I need this? I hadn't had one since November....but my husband can just look at me and tell when I need one. Lately my Bp has been trending downward, pulse elevating.....so I went ahead and got one yesterday. I guess I get used to things, or ignore them...because I can tell a big difference afterward, bp & pulse head back in the proper directions (pulse still always on the high side) and my skin is softer(my feet actually start looking like prunes when I'm dehydrated) So- Potsgirl, if you can maybe grab an article or post from this sight explaining the reasoning to take to you Dr., it may help you. I have a girlfriend who gains nothing from it, in fact it does more harm then good. Again, so many differences and symptoms with this diagnosis. Sandyshell, I'm glad your mother was there to intervene. These doctors drive me crazy with their ignorance of this

Hi All, I was just wondering if any of you get IV fluids regularly, if so, how often? Does it make a big difference to you? I'm sure I'll be bothering everyone here more often, now that my Dr. seems to be fading off into the sunset.... Thank you for all responses, Tommy

hmmm, that smiley face was supposed to be a ""

Hi Julie, My sympathy for what you (and everyone here) are going through. I have the same issue with meds, drives me crazy trying new things, knowing that a)they're probably not going to change a thing what other problems will they create. I also a a "good" run for a couple months, and started a crash about 2 weeks ago, it's so disappointing, even though I know that's the nature of the beast, I guess I get my hopes up when I'm feeling better, that I won't crash anymore. Glad your new guy is so supportive, and try not to worry about being a burden (I know it's difficult,) and enjoy the relationship. You deserve it, you have enough to go through. Peace for you today. Tommy

Thanks for all the input, everyone. He gave me a prescription today for 50k to take weekly, now I'm concerned about that huge dose. I know I'm very, very low- but i'm always worried about any new thing added to my regimen. Not a good worry for me to have I know.

I've gone to a new rheumy, and he wants me to start using a tanning bed to increase my Vit D. I can't even imagine how bad the heat will make me feel, do any of you have any experience or suggestions with this?

Hi Lavender, and welcome. I don't post here very much lately, too sick, & too much going on in my life. But there is such a wealth of information here, and some very compassionate folks. Your post got my attention, because I can relate to the isolation. I was lucky enough to have been diagnosed in a town who has a very knowledgeable Dr. who treats dysautonomia, I have since moved to "nowheresville" and have to rely on a group of dr's who really don't know what to do, all they can do is treat symptoms of their specialty. I'm trying to go back to see the autonomic specialist every six months, but travel is definitely an issue as you have said. If you can even get your GP to do a "poor mans" TTT, it's a good starting point, and then maybe a cardio? I just wanted to say hi, and hope that you can forgo the hopelessnes that I feel. Good luck in your search, and hope you get some answers & relief very soon. Tommy

Tearose, Do you get caffeine withdrawl symptoms when coming off the coffee? Since I was diag'd I cut way back, but afraid it would just add to my sicky symptoms, if I cut it out completely.

Hi Everyone, I have a friend who's been diag'd w/this as well, she also has other health issues and had to quit working in December. I am married so at least my husband can keep our financial issues in order. My friend lives alone, and is waiting on disability, and alot of the charitable organizations out there are maxed out due to the economy, and also won't consider help for her when they find out that she "quit" her job. I was wondering if anyone knows of other support out there, or has ideas about how we can help her out, I'm not really in the financial position to do it myself, but sure would like to find her some relief. Thanks for your input . Peace Tommy

I'm very sorry for your bad feelings, I know it's so had to accept these things, over & over. I hope you can find some peace today, and maybe even be able to give it another try. It is awful we all have these stupid limitations. Take care Tommy

Yes my pcp is referring me to a new rheumy (not like the previous who thought I was seeking drugs I hope) and I will see what they have to say. I was just wondering how many folks with dysautonomia also deal with RA. Thanks for you input. I always appreciate ya'll. Tommy

Hi everyone. When I was diag'd w/Dysautonomia (pots) last year, I was told I have a positive Rheumatoid factor, but none of the other bloodwork supported any action at the time, I've been so "busy" with dysautonomia, and then in Sep diag'd with Fibro- I figured I'd just leave the arthrtis issue tucked away. This week I ask my pcp too run new bloodwork due to some new? symptoms and sure enough now my ANA is positive as well. I was wondering do any of you have RA as well? and if so how do you deal with it, new meds etc. Thanks any input you can provide. Peace Tommy

Thanks for input ya'll- I bp is not an issue really, it goes from low for me (97/62) to high for me (153/110) and has been running on the lowish side of late.....my hr though, is never ever below 90. usually above 110. I've just started wondering how can it be that high all the time without adverse effects, long run. This may just be my foggy thinking not processing properly.....but it's my latest of many obsessions with this DD. Thanks again Tommy

I know most of you with Pots have the issue with heartrate increasing upon standing. I do as well. My question is does anyone out there have a really high baseline? When I wake up in the a.m. mine is around 100, and then increases from there.My Dr. said I just have a really high baseline rate, and nothings really been done to address it. Do people just live with rates like that? Should I be addressing this with another Dr.? Don't get me wrong, I'm really lucky to see the Dr. that I do, I just forget to ask him things because other things are "in the way" at the time.....I've been thinking about this for the past couple days, and want to do something about it. (If possible) Thanks Ya'll for any input. Peace Tommy

Hi,unfortunately I know nothing about your diagnosis, I have POTS, so we probably share alot of symptoms. Just wanted to let you know this is a great place for help, info, and support, and my apologies for your need of it. Hang in there though, the people here have such compassion for one another, it's a good thing you landed here. Tommy

Thank you to all for this support, it's so good to have a place to come where everyone understands. I thank the people who keep this board going as well. For the longest I've just "lurked" here, I feel I don't have much to give, as far as taking part. But you who commented here have been like the cavalry to me. I appreciate it sooo much. Hope everyone has a peaceful day today. Tommy

Hi. My Dr. told me to use 4-5 grams (gross) daily. I took florinef, and didn't find the big salt load as necessary. My Bp ran on the high side, but I feel better at that end. Good Luck with it. Tommy

If only I can get through this "hole" I promise I won't complain anymore about the change this has made in my life, about the day to day symptoms, and inability to do the things I've always done. I am so sick, just like when I first got this stuff, feels like I'm never going to get better....I know ya'll know these feelings all to well, but I guess I had a better handle on it than I thought. Started with sinus stuff, brought on by gag stuff (some of you may have seen previous disgusting post) went to dr. at husbands urging on Tues, started antibiotic. Felt slightly better yesterday but then last nite bottom fell out, my usually highish BP was low, freezing, shaking, dizzy, all the usual. This a.m. I thought I'd successfully slept it off, but as the day wore on (maybe I overdid it.....unloaded dishwasher, did a couple loads of laundry, didnt even shower (gross) here I am again. My son needed a ride home from school, and I felt lucky to have made it. I am so sad that this has gotten this bad again. I apologize for the whining, I know so many of you are worse, way more often, but I just needed to vent. I HATE this. Ha, and I thought I had accepted this. Fool me. Thankyou for listening.

#1- I guess I should've read your signature before asking about your meds, just saw you're basically on the same as me #2- I guess I don't know how to use the quote thingy.......sorry

Do you take Meds for your Dysautonomia as well? I get freaked out about taking anything besides my "usual suspects" Glad what the doc gave you is working, I'm afraid to take more though.

So....Saturday I had an episode, you know the one where you take a drink, and it comes spewing through your nose for no apparent reason?? This happens to me periodically with no problems . However this time, gag reflex kicked in during said episode, so it brought with it alot of fluid again through my nose, for what seemed like forever. My husband helped me get cleaned up, and took care of the area (yes, that much ) and I spent most of yesterday asleep- probably because the ordeal tired me out so much. Now today I wake up with a chemical like smell in my sinuses, I have flushed them, and it still comes and goes, now starting to feel overall crummy (is this my regular crummy or a sinus infection coming on?) and getting a sore throat as well. I know there are those who also have strange symptoms, I was wondering if anyone has any input on this. Sorry for the gross nature. Maybe this is why I don't post very often, eh? Tommy

Hi, I've been taking Midodrine for about a month now. Haven't worked up to the dose my Dr. wants me to take, I'm real funny about meds, but I find that when I take the .5mg in the a.m. it really does help me with energy & blood pooling. ( I can actually take a shower, and dry my hair, and not need a nap) The only side effect is the tingling scalp thing, which alarmed me at the onset, but I was assured that it's "normal" and actually means the med is working. My heartrate does seem to be trending down. And my BP which usually runs on the high side seems to be leveling as well....weird I know. Good luck with it. I hope it helps you. Tommy

Thanks Firewatcher...... I am working so slowly towards what my dosage is supposed to be- took 5mg for first time this morning, and my head is "crawling"- it does seem to help me get going in the a.m., but has anyone else had experience with this side effect? if it is a side effect? My body comes up with so many strange things to do these days, but the doc did say it may make my scalp itch--is this what he meant? Oh- Firewatcher- "Florrid POTS here.

New Computer, so if this appears twice, in part, my apologies..... Anyway, my Dr just put me on this Midodrine, and I'm afraid to start taking it.....my bp has been trending upward in the past few months...usually it's about normal, or above, never low, so I'm afraid this med will put me over the top....so many weird symptoms anyway, and afraid of side effects also. Any extra info & support I would appreciate. Thanks, Tommy

I hope you feel better soon, Sunfish Peace on you Tommy