Lulu

dare i go out on this limb so quickly after becoming a forum member? why not? (gulp!) i see auras, not really strong, just impressions. i can feel another's energy/emotion radiating off of them in waves, especially when it's strong. i also do reiki, though i've not been formally trained. i've just always been able to do it. wish i could do it on myself and get rid of all these darn dx's you see beneath. i used to be a therapist (about 10 years on & off) and it came in handy, but would be VERY VERY draining, because there was usually some heavy emotional stuff going on there. now i'm going into nursing, which i find more physically demanding. the waves of pain or discomfort i feel from my patients motivate me to try to help them, where in counseling it was all about the client trying to help themselves. nursing is more rewarding to me in this manner. although i'm having a heck of a time meeting the physical demands lately it's weird, i was thinking about starting a thread asking others how they were feeling (emotionally) just the other day, now this post from you......way cool! i've also always been off the charts intuitive. again, mostly helpful, but i think sometimes the sheer input my mind receives can be overwhelming. i also dream journal and am amazed when i read a dream i had that has happened that day. i also have shared dreams with others (we have the SAME dream that is) i have a bond with (sometimes an unknown bond) James Bond? i guess i can be voted off the island now. LOL what do you do when you feel that energy from someone? love and light Lulu

i've had the shakes when i get up on occasion. i've never been able to explain them & i never took my pulse, i just always had to lie down again NOW (you know how it is when your body gives you the Great Command). then i would dive into my POTS "warlord horde" (what my husband calls all the array of Stuff I Need on my side of the bed (meds, blanket, heating pad, bottled h2o....) and get an Ativan. i am also a firm believer in having something available PRN to try and calm myself. i would usually have a few yucky days after, too. i really hope you are not headed for that. i would also agree with going to the ER if you think you need to. sometimes it's a roll of the dice how you'll be treated, but it's better odds than being at home in pain and/or feeling bad. you have been doing the right things....but if you need to go, go! as dizzygirl said...can your BF come home & take you? what about calling a cab? i hope you are feeling better and i send you great big (((((HUGS))))) with everyone else. you are not alone in what's happening to you, even if you are "by yourself." blessed be, lauren Lulu

i also think dr grubb is the guru of dysautonomia. he *is* very compassionate and so knowlegeable! he has called me HIMSELf at my home to talk to me about exacerbations. the first time i went to him, we waited 3 hours to see him, but then he spent 1 1/2 with me!! how often does that happen? never! he is dedicated and caring and explains everything. some of the stuff he explains i "grock" in the office and then leave and am like, "ok, now *how* did he put that?" he is simply awesome. and his new NP, beveryly is fabulous as well. he has was voted one of the top 100 doctors in the US last year. as has been said, he did more for me in one visit than doctors had done for me for years! with his battles with renal cancer, i pray for his health and strength everyday. he is someone who understands and has insight into what is going on with me. he is a gem. has anyone ever seen/bought his book? i'm a dedicated follower of Dr. Grubb, and I've also seen Dr. T-A in his office, too. Dr. T-A was also compassionate, knowledgeable and kind. The first thing he said to me tho, was, "I'm not the guru, I'm just a disciple." but he did fine and i got good treatment. They have a great staff, too!

ooh, poohbear! I LOVE that! your're right it's not very nice, but i imagine it's rather satisfying to say or just to think. i wish i could think of these things to say and then actually have the guts to say to someone's face. like when the doc asked "why do you have so many things wrong with you?" i just get mad! and then clam up.

hey LL- my nursing drug guide list the following side effects for BB's: dizziness, fatigue/malaise, headache, tremors, tranisent paresthesias (which is numbness & tingling), especially scalp tingling, mental depression, drowsiness, sleep disturbances, nightmares; postural hypotension, angina pectoris, palpitation, bradycardia, syncope, pedal or peripheral edema, pulmonary edema, CHF, flushing, cold extremities, arrhythmias, dry eyes, vision disturbances, nasal, stuffiness, runny nose, nausea, vomiting, dyspepsia (upset tummy), constipation, diarrhea, taste distrubances, dry mouth, urinary retention, difficulty urinating, impotence, ejaculation failure, loss of libido, trouble breathing, bronchospasm, rashes, increased sweating, itchy skin, myalgia, and muscle cramps. phew! so take your pick....these drugs are heavy hitters. they work great for some, but for others>>LOOK OUT! one of the above could happen, a couple of which can be fatal. hope this helps answer your question. I take 900 mg of BB (labetalol) daily. it's the only thing that keeps my bp from the danger zone. i put up with the side effects i get because it's still better than without the med. interesting how some of the SE read like POTS symptoms, huh? peace and light Lulu

DG- your anxiety is justified! i too have a history of awful side effects to most meds. the list i'm allergic to is way longer than the list i take (which as you can see is pretty long) i actually had a sensitive (NOT!) ER doc ask me once "Why are you allergic to so many meds?" I felt like asking him why he had brown hair.....argh! Because I just am, darn it! Another not-so-sensitive doc asked "Why do you have so many things wrong with you?" Can you believe that? I wanted to hit her. Seriously. & i'm a pacifist. My reply (now that i've had time to come up with a good one, should have been "Well, at least I don't have the problem of being an insensitive idiot with dumb questions!" or something equally snotty..... everyone here has given you good advice. i would second all of it. what has *literally* saved my life is my nursing drug guide. i had an overdose of clonidine when i first started taking it and almost died. i was able to look up the symptoms and know what to expect. just be prepared and hope for the best. like i said, i've got more meds that don't work than do work, but you have to keep hoping for the best. i'm so glad you have someone with you to help you thru those scary times. Blessings and ((hugs)) of courage being sent your way Lulu

I've been having this symptom for years, last year had a BUNCH of useless tests that told me nothing. ended up changing diet and treating IBS, cause we don't know what else to call it. It's better now, but I still get it now & then. It goes away when I lay back down (on my belly on a pillow or rolled into a ball) and sometimes when I sip some water or soy milk. Slowly. Everything seems to have to be s-l-o-w-l-y when that pain & nausea hits. i started keeping starlite mints (the peppermint kind) by my bed to help with dry mouth and also with nausea. ginger is supposed to be good too. And heating pads help with the tummy pain too. My husband says the side of my bed is like a warlord's horde with all my stuff piled up for sleeping, waking, cold & hot, fainting, pain, thirst, nausea, vomiting. Yeah, right, the POTS warlord! Behold my treasure trove!

hey dizzygirl- glad to hear you became sleepygirl at some point between your post this morning and now. I, too, am an insomniac. It seems to go in spurts....there's probably a pattern to it, but I think I would need a degree in Astrophysics or something to figure it out. I can't fall asleep well, then can't stay asleep well. I also have given up fighting it. If I am really NOT going to fall asleep, I do homework or surf around on the web or whatever til I get sleepy again. If i get sleepy again. My dysautonomia symptoms are AWFUL when I don't get enough sleep. I usually end up of the floor with a sycompal episode at least once the day after. The worst part for me is having panic attacks that I'm never gonna sleep again, that I won't make it somewhere I'm supposed to or that I am slowing dying and the lack of sleep is the first step (wow--sleep deprivation makes you crazy) The world (both inner and outer) gets REAL weird after a day or two w/o sleep. It freaks me out, and makes me worse. Maybe I should start watching more Lilo & Stitch I understand your hesitancy to use meds.....but there are some that work pretty well. Of course, some of them are pretty addictive, too. Dr Grubb rx'd me Rozerem, which works great to fall asleep, but then I myself wake after a couple hours. Maybe it would work for you? He pretty much sold me on it cause I'm trying to get off the Klonopin and Ativan (addictive/dependency issues with them) and Rozerem is non-addictive, somehow related to melatonin. The Klonopin and Ativan work awesome though. So does Benadryl. But if you don't want to go traditional meds..... You might try herbal remedies, if you're in to that.....valerian or chamomile is supposed to work well. I haven't tried it myself. Also, the scent of lavender is very relaxing, if you use some essential oil on temporal pulse points or have a lavender candle. That works well for me sometimes. I've heard accupuncture can work for pain and sleep problems. My insurance hasn't gotten "progressive" enough to pay for that or massage.....even when they are proven to help people! argh...don't get me started w/ ins. co's.... Janine is right, meditation is VERY effective, but it does take practice. For now, I just get all strung out and have to go DO something. Not very Zen....you're supposed to just BE. Deep breathing can relax you as well---count in as you inhale, then hold for one count, then exhale for your inhale count +1. Try to count as high and slow as you can. There's a scientific reason this works, but I can't remember or explain it. Here's another thought: if you, like me, surrender to the daytime nap because you just have to have it (I know I usually need a couple) then sleep at night might not come easy. After a life of sleep issues, I just give in to what my body wants to do when it wants to do it. I do hope you get some answers/relief from your PCP. Sleep/wake cycle disturbance is the worst part about my dysautonomia. Hope you get some restful ZZZZ's Lulu P.S. Ever thought of having a sleep study done? Good luck!

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

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 Peace Lulu

Hi, Janine, I'm new to the forum, but have had dysautonomia for at least 8 years. the flu is HORRIBLE! i'd rather be hit in the head with a hammer, i think. (just kidding) each time i've gotten it, it's taken me WEEKS to recover sufficiently. what has worked well for me is having tons of blankets nearby on the bed to move on & off as I get way too hot, then way too cold, pillows in the bathroom and an electric blanket plugged in so i could lay down in there if i needed to; and a clear path to then crawl my way back to bed. And, of course pushing fluids like it's going out of style--pitcher by the bed, a glass in the bathroom that i have to make myself fill with water and drink every time i go in. you may also try hot honey lemonade--squeeze some lemon into some water and add honey and heat in microwave--it helps coughing and sore throat. also, for sore throat I have used asper-gum, which tastes pretty bad, but works well (don't know of your ASA tolerance....) I'm also lucky to have a laptop to access the web (and the world) from bed. Hallelujah for technology! Have you considered a flu shot in the fall? (Hindsight is always 20/20, right?) Dr Grubb recommended one for me & I got it. It made me sick and then I still ended up with the flu! Maybe you would have better luck next season? Just a suggestion. I am encouraged to see that you are an RN (I am a student nurse and trying to get through classes with all this dysautonomia craziness) and you give me hope that I can do it, too! I managed to get a Master's with NCS & POTS, but nursing school is brutal! Thanks for being out there and I certainly hope you feel better soon! Take care. I am sending good vibes your way. (((hugs))) Lulu (This is my first post, so I hope it turns out ok.....)