Lulu Posted March 1, 2006 Report Share Posted March 1, 2006 Hello, everyone, I'm a newbie here, so bear with me and my long saga I have hyperadrenergic type of POTS and NCS, have been getting along pretty well for the past year, then in January all heck started breaking loose. Fainting mulitple times daily, feeling yucky, tired all the time, can't get warm, then get too hot, and SO THIRSTY. I am drinking between 18-24 8 oz glasses (yes, that's right between 18-24 per day!) of Gatorade/water mix and am just peeing it all out. I just can't seem to stay hydrated and feeling well consistently as I had been. Beverly (NP @ Dr. Grubb's office--she is wonderful!!) recommended going to ER for IV fluids at the beginning of February to "jump start" me out of this exacerbation. It worked! And they didn't even look at me like I was nuts when I went to the ER. It was *amazing!* I just told them I was having an exacerbation of my dysautonomia and my cardiologist wanted me to have a litre of fluids. They asked questions, but not dumb ones like I was crazy, *good* questions like they wanted to learn about it. Afterward, I felt great, almost "normal" (for me, anyway) for about 2 days....then started crashing again.After another 3 weeks of rollercoastering up & down....go to work, can't finish shift...go to school (I'm an RN-to-be, knock on wood), have to nap in car....try to get up in AM, pass out on my way to turn off the alarm......I went back to the ER and got another litre. Felt good enough to get through lecture, practicum and clinical the next day (woohoo!), then crashed on the second. I'm now at Day #3, looking at 2 clinical days ahead and another long one on Monday. My symptoms don't seem to be relieved with anything else right now but the IV "infusion." I can't figure out why I'm not retaining the fluids I'm drinking (which I know should be addressed) but I've got to get through the next couple weeks. My family doctor (who is also really great and works with me and believes me and tries to learn about what I have) can't see me until next week, but has said to go back to ER in the meantime and get fluids as I need them, & have them check electrolytes and for diabetes (runs in family). I'm waiting for Dr. Grubb's office to call me back. (Could be awhile, they're so busy!)So, here's the real question: Has anybody been here before? What about a port-a-cath? (Assuming I'm gonna need fluids once or twice a week) Dr. Grubb doesn't recommend salt-loading (My BP tends to run WAY high--I take 900 mg of labatelol and 0.4-0.6 mg of Clonidine and 5 mg of Norvasc everyday just to keep my BP in the semi-normal range so I'm leery of adding salt to my diet anyway). I've been reading a lot of info in this forum and other places, and I just seem to be getting confused. (My concentration is off, too.) The thing that's driving me crazy is that when I'm good, I'm really, really good. I feel great! & I've been well maintained for over a year. Now it's like I'm re-living the nightmare of when I was first diagnosed. Why now? I can't figure it out and don't know what to do. I just need some ideas; I know y'all can't give medical advice. I'm getting freaked out and wondering what I can possibly do.I'm so glad I finally joined this forum. Must have been a HUGE brain fog that kept me away all these years. Thanks for being here and thank you to anyone who has any ideas for me.Blessed Be in Light and PeaceLulu Quote Link to comment Share on other sites More sharing options...
halmad85 Posted March 1, 2006 Report Share Posted March 1, 2006 I'm so new to POTS, so, I can't really give any advice because I don't know the answer. Hopefully someone here will know how to help you. I just wanted to say welcome and I wish you better days ahead.Warm hugs,Jen Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 1, 2006 Report Share Posted March 1, 2006 Hi,Welcome aboard.I could suggest to stay within your limits. Quote Link to comment Share on other sites More sharing options...
kmpower Posted March 1, 2006 Report Share Posted March 1, 2006 My father-in-law is in a convalescent home and very healthy at 91 -- except that he gets symptoms, various kinds of symptoms which look like chest colds, dementia, flus, different things. Every time it is because he is dehydrated (when they finally test his electrolytes and proteins). When he gets IV saline, he gets back to normal very quickly. The last time, no-one at the home believed us (new staff) so we ended up in an ambulance to ER where they gave him an IV which fixed him right up. The paramedic said to get Pediolyte (sp?) and not Gatorade. He used to be a forest ranger and he said all his friends drinking Gatorade got dehydrated fighting fires way before he did. He always recommends it to patients, but knows he is not a doctor.Other thoughts...If your protein level is low, you will lose fluids into your tissues.If your aldosterone level is low, your adrenals will not retain sodium.Good luck. Your schedule sounds grueling for your symptoms. More power to you.LL Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 1, 2006 Report Share Posted March 1, 2006 Welcome!I too think your electrolytes are not balanced...my sense from my personal experience...check with your pcp.I agree with the pedialyte suggestion vs gatorade.That is way tons of water! You need to retain a little more and hopefully take in less. I'd hate to think of how many trips to the restroom that translates to for you!! healthy wishes, tearose Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted March 2, 2006 Report Share Posted March 2, 2006 Hi welcome to our potsy world!!I'm a big one to support IV hydration.. as it really makes a difference in how i feel.. that is alot of water that you are drinking dear!! though I so understand the need for drinking whne you can "quinch" that thirst!! last time I was in the hospital I drank about 100Oz of water plus they were giveing me bag after bag of liter saline.. I couldnt get enough water!!I do hope that you start feeling better soon!!and again welcome!! Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted March 2, 2006 Report Share Posted March 2, 2006 Hi, Just wanted to say hi and welcome you to the board! Jacquie Quote Link to comment Share on other sites More sharing options...
AJVDK Posted March 2, 2006 Report Share Posted March 2, 2006 Just wanted to drop a line and say "Hello", and welcome! Amy Quote Link to comment Share on other sites More sharing options...
michiganjan Posted March 2, 2006 Report Share Posted March 2, 2006 If I were you I would go to an endocrinologist ASAP. You may also want to research and read about diabetes insipidus. This is not diabetes melitus, which is what we commonly think of as diabetes. Diabetes insipidus has to do with fluid balance and the hormone desmopressin. It has nothing to do with blood sugar or insulin. This message won't let me put in a link, either that or I don't know how. But I recommend visiting the following website. I belong to this organization and take the newsletter.http://www.diabetesinsipidus.org/ Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted March 2, 2006 Report Share Posted March 2, 2006 Hello and welcome. I am one of the resident "IV queens" here as I have a port-a-cath and require daily infusion. You may want to search re iv fluids to see what all has been discussed recently on the forum. The others gave some good advice regarding pursuing an explanation for your sxs. You may PM me if you have any additional questions regarding a port-a-cath or frequent iv hydration. Good luck!Carmen Quote Link to comment Share on other sites More sharing options...
janineerrn Posted March 2, 2006 Report Share Posted March 2, 2006 Hi,Welcome. I am an RN, let me just say that nursing school is nothing like nursing~ your first job will be your real training and are you in for a ride. Welcome to the world of POTS, this is a great site with great people.In my opinion I think you should realize that POTS is a disability so take advantage of any extra help you can get from the college you are attending. Get a handicap sticker and park close, every step you save will help. You need to rest. Rest is very important in staying functional with POTS.In my case, when i was diagnosed with POTS I was working 12 hour night shifts, overtime, working on my bsn, had 2 teenagers, 2 horses and a small farm to run. I had the same problem you have now now with fluid and electrolyte balance. (I agree with michiganjan, get DI ruled out) It took about a year of medication experimentation, IV fluids and a major lifestyle change. Now I am out on disability, I would give just about anything to be able to go back to work and ride horses etc...I hope you can figure out what works for you, its trial and error as you will see... everyone reacts to meds and tx modalities very differently.One thing I suggest is that you get short term and long term disability insurance NOW, if you can, especially if you have open enrollment through your job. Good Luck with everything and if you need help with anything related to school just pm me or email me, Id be glad to help.Janine Quote Link to comment Share on other sites More sharing options...
gwen Posted March 2, 2006 Report Share Posted March 2, 2006 Welcome to the board. I hope you follow up on elec and di. Clinicals and school are a lot of stress, so pace yourself. I hope you can get some answers soon.:-)Welcome to the board. I hope you follow up on elec and di. Clinicals and school are a lot of stress, so pace yourself. I hope you can get some answers soon.:-) Quote Link to comment Share on other sites More sharing options...
Poohbear Posted March 2, 2006 Report Share Posted March 2, 2006 Welcome!I hope you find some answers soon!!Others have given you good advice already so I won't repeat that but I will say that I too have high BP and the extra sodium has HELPED me a lot!! We were recently talking about this on another thread here about how it may sound counterintuitive at first but really the high BP MAY be a sign of your body overcompensating so when you give it more of what it needs it settles down.I think it's worth trying the increase in sodium to see if it helps. It took about 3 weeks for me to see a big difference. You still have to drink a lot of fluids though. It also makes sense to me because I too responded well with IV (except IV access is difficult in me and Cath is not a good option for me since I have a pacemaker) and they do have saline in them so it makes sense to me that for some of us it may be having the combo of fluids and salt that really help. Quote Link to comment Share on other sites More sharing options...
Lulu Posted March 2, 2006 Author Report Share Posted March 2, 2006 Thanks for all the warm welcomes and good advice! Heard from Dr. Grubb's nurse....my message is in his "inbox" and I'll be hearing from him or Beverly soon. Went back to the ER tonight for another litre of fluids. Feel pretty good now, almost like normal. Was able to sleep for a few hours, now am up and have gone thru a qt of water and have dry mouth. What is going on?They checked my electrolytes and protein and all the lab stuff at the ER>>>>NORMAL! I didn't know whether to laugh or cry when I heard that. Glad it's normal, but something is definitely not right. Will wait to hear from Dr. Grubb and see my reg. doc on Wednesday. In the meantime, get this!! The ER doctor wrote me a prescription for 1 L IV fluids/ day until I can see my doc. I couldn't believe it! After 8 years of run around and disbelief, I've found some ER docs that are believing me and doing the right thing. The doctor I had tonight said he knew he was out of his league, but if it was helping in the short term, he would do what he could. I was floored. It's rare to hear a doctor you've just met say "Gee, I don't have the answers. But since you seem to know your body and what's working, let's go with that." Amazing.I felt a 180 turnaround after I had 500 ml in me. Won't last, but it will be the shot in the arm I need to get through tomorrow at least. I will ask about DI. My husband (a saint) got me some pedialyte. Wow! That is a taste you have to get used to. I am concerned about the sodium level in it.....which is why I had been drinking diluted Gatorade.....just to get some electolytes, but not so much salt and sugar. But I am going to drink the p-lyte along with my regular routine and see if it helps. I don't think it will hurt for the short term, and maybe it will even help. As some have suggested an increase in salt might be what I need (?)Yes, my schedule is demanding. I am able to tolerate a lot more than I could 8 years ago, or 5 years ago or even 2 years ago. I learn more about what I have, am and need each day and week. I've taken a long time to get to where I can function fairly normally. I guess I'm "passing" as a normal person, except when I'm passing out! I go to school part time (clinicals are the most demanding days....hard to stay hydrated while running around) and I work part time for my father, who is fairly understanding (I think there's a part of my not being able to work that goes against his Midwestern work ethic.....but he's finally coming around to realizing this thing is real). My faculty and school have been great! so have my peers that know about my dx. My husband also works at this school, so i have a backup support right on campus and I do *try* not to overdo it. I miss a lot of classes and then work from home to catch up. I take lots of naps between gigs. So far, it's been "working" not like regular school, or what my peers can do, but I'm getting through. Then this latest crash. I hope I don't have to give up school and my dream of being a nurse. This is my second round of nursing school. Full time first time around just about killed me. WAY more than I could chew there.I want to get through nursing and be able to work part time, but I know if that doesn't happen, it won't be the end of the world. I'm glad to know about disability and help I haven't sought yet. I will check into them in case I need to go that way. Unfortunately, my dad's shop is just me and him. No insurance and I don't think my husband's will cover me. Again.....the need to get through nursing where I can have some opportunities to flex my schedule and get money and coverage we need to take care of me.All of you on the board are such total inspirations to me! I'm just so glad to know I'm not alone. I have been blessed to have gotten "better" more than once, so maybe it can happen again? Each of you continue to perservere and I am in awe of that. I am in awe that we are all still here. A very wise man said to me today, "When compared to BEING, walking (or standing) is really over-rated." I thought that was a pretty good insight. Thanks and blessings and good vibes to all here, especially those that posted. You have been so helpful. I will keep you posted as things (I hope) get better.Love and Light,Lulu Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted March 2, 2006 Report Share Posted March 2, 2006 LuLU.. that is great tht you re able to get IV's daily til you see your doc!! wow what a good ER doc you had!!I'm glad that it helps you and is getting you thru the your gruling schedule.. my nursing school.. that is alot of work for some one who isnt a potsy person!! WOW!! you go girl!!! Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 2, 2006 Report Share Posted March 2, 2006 Hi and welcome!I am just like you.... My hydration issue is my biggest problem I face. I ended up in the hospital about 5 times b/c of it....a couple years ago I got very bad and was drinking about the same as you hot, constantly thirsty etc... I was hospitalized for IV fluids or at the ER all the time....I did a trial pf DDAVP which helped for a little while but not long......I have now found some tricks that help me.When I was drinkign all that fluid one thing that I was doing unknowingly was not adding the proper balance of electrolited to my drinks and in turn I was urinating out all my electrolites causing my problem to be worse thus this viscious cycle....Now I drink about 3 t0 4 liters of Water with Electromix added to it....and for evert liter I put a 1/4 tsp or more of celtic sea salt into the drink... This helps keep the balance you need.I also have a standing order for IV fluids at home which has been my lifesaver......I also wear compression hose which seem to help keep the fluids up near my head.I am still in the process of figuring this part out but for now these are the things that help me keep a baseline....I will keep you updated if I find anymore info......Take Care if youself and feel better! Quote Link to comment Share on other sites More sharing options...
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