Lulu

Anyone else out there got the first Spring cold or the last of the flu?? Hit me outta nowhere (just when I was starting to *finally* come around from the last round of butt-kicking exacerbation...) I don't want to eat, can hardly hold my head up, ache all over. Blah. Thank goodness I've got a couple days to recoup (Please, God, let me recuperate!) before school starts up again on Tuesday. (starting to panic a wee teensie bit.....) How long do y'all's colds last? The flu knocked me out last year for WEEKS. I hope it's "just" a cold...but don't know how long I'll be suffering like this. What do you all do to feel better? I'm still getting IV therapy every 48 hours, pushing fluids, have no choice about sleeping almost 24/7, am taking zinc/homeopathic cold ease stuff. Be well, everyone! Love and light, Lulu

Lest I be misunderstood, let me clarify a few things...... I had a great life before dysautonomia, even though were some snags, just as everyone has, because we're human. I never smoked more than a pack a week, I was a "social" smoker. I always ate well, have been a vegetarian for nearly twenty years. I was active, a go-getter. I was a therapist--in homeless shelters, community mental health, substance abuse counseling and crisis intervention. I was good at my job and was able to help people. My family and friends were good people and we had good relationships. Before I was diagnosed, I had a horrible marriage and I managed to get through that & out of it. I then met the ONE, an active playful fellow, who I enjoyed hiking, biking, playing tennis, frisbee, lots of stuff with....got my dx about 4 months into our dating and he took me to ERs, doctors, everything. He married me anyway, within a year of our meeting. I was 27, he was 23. Within 1 year of marriage, I wasn't able to work and this has been up & down, eventually I had to stop counseling....even tho I worked hard to get my Masters degree after my dx. I decided to change fields...go into nursing (I'm still in school after the first one kicked me out because of being too sick), it's been a battle to still want to contribute to society and have to battle this illness. Now I can't work again, am barely hanging on to going to school & lately it's all been on him....the finances, taking care of me, taking care of our menagerie of pets.....I'm sure he would like to have that bouncy active partner back somedays and that what happens to me has got to scare the heck out of him. I wouldn't wish what we've had to go through on anyone. We are barely surviving on the monetary plane..... BUT, since I have no choice about having this illness & I am always going to have it, I think I better start getting OK with myself about having it (after "officially" being dx'd for 8 years--it's time) and that includes looking at what it's given me, good AND bad. I still have to admit, though this disorder stinks, I have gained a deeper appreciation for what is still good. I am awed by the love that people can have for each other & that I see in my life. I feel tremendously blessed for that, despite this horrible dx. & I know none of us is having a picnic with our illness(es). That is a given I'm sure all of us understand too well. As I posted to begin with, this is a heavy question. I appreciate everyone's brave answers and for sharing whatever their reality is. I hope to hear thoughts on this from other posters, too. I'm really interested in how people deal with this. And my wish for everyone, truly, is Peace, Love and Light, LL

Hey y'all, I was just thinking (my first mistake ) about a post I recently made. I was considering that even though having dysautonomia really stinks, I have had some good things happen since I was diagnosed and from my recent/current bout of getting really, really ill. What I mean is I realize that I've learned a lot about myself and my family and friends and people in general. They say things happen for a reason....I wonder if I would have learned all of this eventually?? I wonder why me? Why anyone? Why dysautonomia? These questions help me to deal with the overall scope of s**kiness of having dysautonomia & everything else, and they lead me to think some good has come of it, wee little bits that have changed my life.....and I must admit, rather grudgingly but very truly, some of those changes have been for the best. I mean, because of my dxs, I: quit smoking after 17 years quit drinking (not that I was much of a drinker) but this is a good thing eat better and more healthfully may even actually exercise again someday soon started taking care of myself and making that a priority actually realized how blessed I am that I'm not worse off and how GOOD it feels to have a "normal" day that I would have taken for granted before realized how blessed I am to have loving, supportive people in my life, some from places I never expected realized how blessed I am to have met ppl through this forum have a greater sense of happiness for folks when they have small triumphs, the joy of being able to relate realized the value of s-l-o-w-i-n-g d-o-w-n realize that I can draw boundaries and benefit from having done so I can say "no" now and not feel *completely* guilty I know I'm not really an "alien" anymore, though my sanity may still be dubious I can stick up for myself better than I used to I know way more about the autonomic nervous system than anyone should....maybe I should take a spot on "Jeopardy?" (We could be Team DINET....anyone?) And I wonder if any of you feel like some good things have come from your diagnoses? (There's a part of me expecting to be crucified for even asking this question or being a Pollyanna, but I have to wonder, it's just my nature.....I know none of us would choose this to happen to us & I hope no one is offended by my asking or trying to look at the good side when everything seems so bad.) Bright blessings to you all, Lulu

Welcome aboard! Glad you posted Sorry you have POTS, but for me, I have learned so much about myself, my family and friends and people who have to deal with serious, weird disorders (us!).....I must say that those aspects of this disorder have been tremendous blessings. It's ironic, that's for sure. Although, if given a choice, I'd never choose to have POTS! None of us would, I bet. I was 27 when I was dx'd too. You'd think I'd have more of a clue 8 years later, but it's a baffling thing, Life w/POTS. Anyhoo, welcome! Peace and light, Lulu

my husband sings the little jingle from Rice Krispies to me, "Snap! Crackle! Pop!.... Lulu stretching!" or ".....Lulu walking!" or "....Lulu moving!" It's to the point that if I don't crack knees, hips, ankles, wrists, shoulders, and neck--oh, big time on the neck---I hurt. I've just always been like this..... Wait, this isn't something else I need to worry about?

I've tried melatonin and it never does anything for me. I also recently had an RX for Rozerem, which is melatonin in concentrated form according to Dr. Grubb, no addiction factor. It would put me to sleep, but then I was up again in 2 hours. Sigh. Hope you have better luck! Peace and Light, Lulu

Sunfish, I hope you are well again soon! You are in my thoughts....being hospital-sick is NO FUN! Best wishes for a speedy and full recovery! Peace & light, Lulu

Brenda, I hope you and your daughter are feeling well again soon! & I hope you are able to continue the Snowflake Foudation; that is so cool. Although my dog is not a true "service" dog, he'a big plus!! Take care and feel better! Love & light, Lulu

i LOVE JaneEyre's idea of energy points!!! Thanks! I think that will help me fine tune my doing/not doing even more. It's so new to me to be thinking about "looking out for #1" I've really got to use any tools that might work to keep me from gettting so blasted sick I can't function. I always help others, it brings meaning to my life, but if I can't do that (because I haven't taken care of myself) then I feel really bad emotionally and it ripples from there. I resonate with what so many have posted on this thread. I know there's a balance for me. I've had it. Then the wind blew, the boat rocked.....it was gone.....now I'm on a quest of sorts to bring some control back to my life. We POTSers know that can be difficult sometimes, some more than others, some less than others. I am so grateful to what everyone has posted on this thread so far...I am finding it so very very helpful!!! With gratitude and light, Lulu

I have had real, big-time, huge, unbelievable, colossal and yet, somehow, routine trouble knowing when to say ENOUGH, on both counts: when has it been too much pushing and when it is time to say, "Once more unto the breach!!"? My new strategy (still under construction ) is a few hours on, a few hours off. D-A-I-L-Y. (like the others, if I schedule full on or off days, I get into trouble) The "on" hours include anything physically or mentally taxing. The "off" hours are for taking care of me. The new twist is that I'm scheduling myself to have downtime so that I can take advantage of it if I need to & to include the stunning notion of taking care of myself . It's like a frickin' revelation!! This is my new plan, anyway, slowly being implemented while recovering from yet another ***-kicking 2-month exacerbation. I'm trying to reapproach my life and say "No" more often than I used to. Will have to let you know how this new lease works out in the long run...(fingers crossed!) Before this most recent POTS butt-whuppin, I would totally overbook my day--only very, very rarely scheduling chill time---- do that for a few days, which would turn into weeks, months.....then I would end up REALLY sick, AGAIN. (Go figure, duh) And people around me are wondering why I can't do as much as before.....and I can't blame them>>I led them right to the conclusion that I can be Go-Go-Gadget Lulu!! So, what have I done when I've gotten "better" again?? Done the whole darn thing over. This is the definition of INSANITY!! You see, the dilemma is this: when I have my good days, it's so EASY to overdo it. SO EASY to "pass" for a normal person, keep fooling myself, stringing those overdone days along 'til I drop. What to do? Quote Shakespeare, again, I guess: "This above all, to thine own self be true." Now, if I can just figure out who the heck she is, we'll be in business. LOL.

My husband asked about making electronic brochures available from DINET...... downloadable ones on demand for those who want them.....linking it to the site via pdf file to preserve formatting. There may be an audience for that. I know I would print my own if it was available that way and then spread the word from my little section of grass roots. Maybe other members would, too? Save on printing costs, big time. Just another idea into the fray.

i threw up too at my first TTT. and passed straight out, just like lightning. the first one they did right, i guess....i didn't talk and it was quiet. too bad those results got lost and i had to take the other one with the evil pointy-toed tech! glad to learn i'm not the only one who threw up. i was so embarrassed. they didn't even have time to get me an emesis basin. gross!

I agree totally with the above posters, & would add part of my own experience: i had horrible pain all over my abdomen last summer and weant through every test know and they never found the source of my pain. my doc bumped my protonix up to 2ce/day and i changed my diet. after awhile it helped. we just chalked it up to IBS and POTS related stuff. don't know why i have it to this day. but i take nexium now (kinda same thing as protonix) and watch my diet, so not too many troubles. i missed that whole summer being in pain, had to take pain killers and be basically knocked out the whole time, couldn't eat and lived on ensures and gatorade. I hope you have better luck and are able to see a different doctor, especially since it sounds like your pain is more localized to the uterus/bladder area. go to a different uro or gyno or doc! Pain is not normal!! I really hope you feel better soon!! Keep us posted! Peace and light, Lulu

Oh, Lisa! How scary! I don't know what to tell you except you'll be in my thoughts and I hope you feel better!! It's easy for me to say, but please only worry about getting well. That is the only thing you really need to focus on: relax and be well. You'll get more answers soon and in my opinion, worry will only add to your stress and make you feel worse. Though it is near impossible to avoid worrying, I know. I just wanted to encourage you to try to relax and be patient. Peace, love and courage, Lulu

Welcome, James! I know I'm not alone in saying your symptoms sound very familiar! It definitely sounds POTSy to me and POTS is definitely an autonomic nervous system disorder. Perhaps your doc misspoke? They're not infallible. Here is another link you may find helpful: http://www.ndrf.org/ and also: http://www.medscape.com/viewarticle/522421_3 This is an article by Dr. Grubb, who is one of the preeminent researchers in the field as well as a wonderful physcian. You can read all about him on the forum, too. For this article, you need to get a login, but it is free to join. The article is extremely informative. I would advise breaking off bits of info at a time. It can be very overwhelming. Things will get better for you the more you know and with treatment. This forum and its ppl are also an excellent resource and support system. Glad to have you aboard Peace and light, Lulu

Hi, Patricia, I have the very same problem every summer. I have to take at least 4 cool to cold rinse-off's in the shower/day in the summer. Cannot tolerate heat AT ALL. The heat dilates my blood vessels and I can't "counter" quickly enough. Easiest way to remain upright is a quick cool rinse, A/C & LOT of fans. The reverse happens in the winter. I can't get warm and have to take quick warm to very warm showers and crawl immediately under electric blanket. Being hydrated helps in both situations, but I'm overly prone to dehydration, which we still haven't quite figured out why yet. (I blame POTS ) I think the temperature regulation is in all likelihood really more a dysautonomic issue than with the meds. Do you have any breathing difficulties? Asthma would make breathing in hot, humid weather difficult. Good luck! Peace & light, Lulu

Just wanted to add my sympathetic "ARRRRGGHHHHH" and offer shipping on that manure pile to this "doctor's" office. Maybe it would cover up the smell of this guy!!! Probably not. But his patients would know he STINKS!!! What a dirty, low-down, sniveling, cowardly, unprofressional, inhuman and well, I've got other choice words, but this is a family forum. What a jerk! i'm so sorry you've had this experience and hope the other referrals work out for you. Good luck to you!!! Keep us posted! Hang in there!! Courage, strength and light, Lulu

Ok, y'all: CFS &/or Dysautonomia???? So are they the same or different or related in some way medical science hasn't figured out? I read Sophia3's posts about it & I'm just more confused. For YEARS in my twenties, before I was diagnosed with NCS and later POTS, I kept trying to tell my doc I thought I had CFS. I had read about it and had all the symptoms. My doctor at the time was great, but he wouldn't "settle" for that dx and had me do LOTS of different testing and then sent me to an infectious disease specialist, who then sent me for TTT. And shazam! I have dysautonomia and this explains my symptoms. Now, here's why I'm confused. My then-doc said that CFS was like a 'wastebasket" dx. That it really didn't explain why all these ppl had all these sxs, just grouped them together. When I found out I had a form of dyautonomia (and how long it took me to get that dx and be taken seriously) I kinda understood why CFS was thought of that way by this doc. I just thought that folks w/ CFS really had some form of dysautonomia and hadn't been dx'd properly/thoroughly yet. Now, I'm unclear about this, hoping someone knows. Sorry to be so dense about this. Peace and light, Lulu

Yippie I O kie Yay!! L & L, lulu

I don't seem to sweat at all, except at night! It's not uncommon for me to wake in pools of sweat. Ick! Then i get cold. In the summer I get so overheated but don't sweat, have to take cool showers to feel OK. But I've been told it's part of dyautonomia (I get hot and cold) and I'm probably perimenopausal at 35 b/c I have PCOS. Dunno if that helps you. Sometimes diet or an environmental change can cause your body to smell different. Different foods smell different as your body metabolizes them. The others have posted some good ideas....good luck and keep us posted! Peace and light, Lulu

Welcome, Ellen! It's good to hear someone is doing pretty well on their meds. I usually do, too....unless I forget to take them, or totally over do it, which I've been known to do for days/weeks/months at a time if I can get away with it. I'm currently recovering from a 2 & a half month exacerbation because I tried my cyclical routine of pretending I'm a "normal" person. HA! I get better, I do too much. I get worse. Repeat. (I'm actually proposing to break the cycle this year! Fingers crossed! Drawing some lines in the sand!) Brain fog is the worst part about this illness UGH.....it's bad enough to be expected by others to explain it and you need a script to read from. But sometimes I have to write lists of what I need to take to school for the day....and it takes me a LONG time sometimes to remember.....boooks......pencil......calculator.......gatorade bottle......keys......watch.....notebook.....wallet......um, something else......?? I used to be smart. Really. Now I fake it. it's pretty ridiculous. the worst is when i walk two feet into another room and can't even remember why I got up. then i go sit back down and forget what i was trying to think about. As soon as I have to write a list to remember how to walk to the next room, get the whatever and walk back, that's it: I'm hanging it up. I hope you continue to do well and find answers and inspiration among these ppl and their posts. I think they're WONDERFUL. Love and light, Lulu

I agree w/Poohbear....it's probably a good idea to start taking that med. it also sounds like they didn't do it right. the second tilt i ever had done was "inconclusive"--and i wonder why? the tech jammed her shoe in my shin during the upright part and kept telling me "Don't pass out! Don't pass out!" Like they had a betting pool to see how many pts they could keep upright that day. ARRGH! It was awful because i was nauseated and feeling awful and couldn't pass out from them torturing me after tilting me up. you might have to get another tilt done. but at least you know what it's about now. glad you survived it and i hope your doc is able to make some sense out of your results. keep us posted! Peace and light, Lulu

Hey how did i become the EVIL one? I beg to differ, J9! light, love and lunacy, Lulu

J9- Good luck!! Dare I say to prepare for the worst, but hope for the best? (Do not take a weapon!) Just be your charming, aggressive self and tell her what you need. See if she'll deliver. Keep us posted!! Courage and light, my friend, love, Lunie

What a fun thread, Claire! I hope a bunch of POTSers put in their 2 cents. Before I heard the term POTSy, I used "woobly." No one knew what that meant either. POTSy, aka WOOBALICIOUS: -had a GREAT day, now feel like CRUD, seemingly no reason whatever -can't get warm/get too hot (happens almost simultaneously) -see stars, hear a buzzing noise in my head -feel jittery or bogged down, like i can lift the Sears Tower or I can't lift my head -brains spins at MACH 8 or is clogged with pea soup -I feel like i'm a genius and i feel like the world is ending (simultaneously) -the core of my being is being sucked to China -the whole of my body is floating to outer space a la Major Tom -moody moody moody moody MOODY -skin feels like it's crawling off because it's too electrified, seeks huge magnet somewhere -heart is POUNDING (sometimes tachy, sometimes brady, sometimes Fonzi?) -see my heartbeat in my eyelids, get short of breath -have to pee, but not really -dehydrated/"shocky" feeling, vertigo -and, waking to find myself in puddle of my own drool because i didn't pay attention to the signs and passed out! (Actually, then I feel like a putz, not POTSy) yep, it's a fun disorder. especially trying to explain it to others. they think i'm making this up! You can't make stuff like this up! Who'd want to live like this? Oh, me, me, pick me!! Hope you feel better! love and light, Lulu