Lulu

HOORAY!!!!

Should we mark this in Ripley's?? lol

I am very happy you are feeling better and am so glad you shared a success story with us!

Love and light,

Lulu

Dear MJ,

I also commend you on your achievements--not just school, but on surviving POTS and all its requisite well, sludge, for lack of a better term. Having just passed age 32 a few years ago, I remember clearly that pressured, spinning feeling of what do I do now? I had just finished my master's degree that year in counseling and though i suppose i "should" have felt proud, I instead remember feeling rather ho-hum and overwhelmed by the whole thing. I was at complete odds with myself. I worked so hard to get there, but then it just seemed like a let-down, because I had imagined things in my life would be/should have been so much different when I actually arrived at my graduation. I had expected a stronger, more-decisive me. One with more friends and a more understanding family. A me that could work a full week. I *had* accomplished so much (it took me six years to get my degree, too) but it felt tarnished because I couldn't have "everything" I had thought i wanted and so then i didn't know what i wanted instead. (does this make sense? )

I can tell you that it will get better. You have strength and intelligence, and law has MANY opportunites, some of which may be unknown to you as yet. You are the captain of your own destiny, and you are absolutely allowed to change your mind at any time and to do what pleases you! Moreover, you are definitely allowed to vent, breakdown, re-evaluate, call for support and just BE.

Give yourself permission to figure it out at the pace it comes to you. And have faith. You've come this far for a reason.....again, maybe not known to you now, but be patient. Remember, too, that wherever you are in the Universe, doing whatever you are doing is EXACTLY where and what you are supposed to. As is said, things happen for a reason. It may be of no true assurance, but what you are going through is typical--for your age, for your disorder, for your intelligence level---and its frightening intensity will pass. And though you feel like you're cracking up, it's a sure sign of strength to ask for support and take time for yourself.

Congratulations on your degree and congratulations on your continued bravery as you approach this next crossroad. Best wishes and brightest blessings,

Peace and light,

Lulu

Welcome aboard, Amber

Lots of ppl w/ POTS have migraines (I think it's assoc. w/ the hyperadrenergic type---anyone help me out here??) BB's work great for migraines (and Toprol XL worked really well for me many years ago, now I take labetalol & a LOT of it) anyhoo,....i agree, see if your doc can get you samples.

and hey, i think it's great you just jumped right in! everyone here has been really great! i'm sure you will find lots of answers and support among the forum members. i know i have, and am so grateful!

continue to take care and keep us posted.

love and light,

lulu

I'm a veg-head, too and I also have IBS, which I think both lend to the problem, of eh-hem, gaseous anomalies in our household.

What I found really works best is to figure out which foods make it the worse....and then reduce/eliminate them. Which is a tall order! You can combine them with digestive herbs like ginger, peppermint, fresh parsely or the charcoal, if you don't want to/can't eliminate the culprits totally. It takes awhile to really get it figured out tho. You also may try including L. acidophilus in your diet. It's available in pill form and no longer needs to be refridgerated like it did before. Also, aloe vera juice is good for "smoothing out" your intestines so they're not always "yelling" at you. You can drink full strength or diluted. You might also check into Ayurvedic diets....which are kinda complicated (to say the least) but it's been helpful for me to learn a bit about the ancient theories of eating according to your body type and using diet to keep from getting ill. I think it's fascinating. And very very complicated.

Anyhoo, these are just suggestions of what has worked for me. If it got really really bad (like PAINFUL to me) i have actually used Gas-x or Phazyme. Beano works well, too, if you use it before consuming a "known offender" But some folks don't like to take over-the-counter meds like that.

The idea of those charcoal panty filters cracks me up! I wonder if they really work?

Good Luck!

Peace and light,

Lulu

Lisa,

I agree with futurehope and angela....reframing your approach to getting things done and how you think about them is key to getting over the sadness and crappy feeling. And yes, it is sad to lose what we've had before. It is OK to be angry and sad about it, it doesn't make you crazy. It's also OK to run around like a dervish to avoid reality or prove it wrong, especially when it's painful. And it's kind of silly, but we all do it, everyday of our lives, and we're not crazy--just human.

And since you're a human with POTS, you get extra-specially blessed with lots of battles. Battles within and without. You may consider doing what makes you strong---inside, spiritually/mentally/emotionally---focusing on what gives you balance to help you fight these battles. Part of that focus is definitely what you CAN do. And you can really do a lot, in the big picture. As cliche as it sounds, there are those worse off than you. And, no, none of it makes your loss or frustration any less real.

I have made the mistake of doing too much so many times I can't even count them. Sometimes it was a big project & easy to I.D. Other times it was something seemingly benign, like hanging out with friends/family for "just a little bit longer." Speaking for myself, I ignored those little tell-tale signs I might have been overdoing it, because it was just too painful to think of what it meant if those signs were right! But it *always* caught/catches up to me, and I had to learn (am STILL learning) the hard way to do what I can, and leave the rest. And the other, unspoken, part of that: it's OK to leave the rest. There's still A LOT that is OK with me, even though my body would like to differ sometimes. & I would bet money there is A LOT that is Ok with you, too.

It may take awhile to get it figured out, Lisa, but you are on your way!! I mean, for starters, you already know about the sneaky wallpaper and you've got a great doc on your side. You really do know so much about yourself and you're braced for good things to come your way....I wish you luck and many blessings,

peace and light,

lulu

Hi, Stacie and welcome to the board!

Ugh! It must be horrid to be spinning all the time! You poor dear!

I get vertigo from time to time, just assumed it was part of POTS because it is absolutely related to how I lose or come close to losing consciousness, & I definitely have the weird gravity thing. To me, it feels like the core of my being is being pulled to the other side of the earth. Other times I feel like I'm a tethered balloon and then I just s-l-i-p a-w-a-y right up into/out of space (this sometimes comes before or with the vertigo, but not always). It's a strange sensation, either way, to be sure.

I've been told that people faint at different speeds by Dr. G. (! that was a revelation) and that I have a very slow faint. I don't always go all the way out, though. And sometimes the syncope is accompanied by these sensations, but not always. To me, it is a relief if I actually lose consciousness, because being able to hear & sense the world but unable to respond or help myself due to being near-unconscious....it's excruciating.

Maybe you are having a slow faint all the time? It seems extreme, but I have been known to go thru this dozens of times/day when ill. I agree with the others there seems to be a link & like other posters, I would recommend going to a really good ENT doc, if you haven't already. Good luck & I hope you feel better!

Peace and light,

Lulu

Hey y'all

Been awhile since I've posted about my own situation (although I've tried to log on to give others support and check in). I've just been mainly so exhausted. And be forewarned, I just re-read this and it's LONG. Sorry I don't mean to exhaust anyone reading this. Just venting, all at once.

When last we left our heroine (me ) she was fighting with ER docs and waiting for an appt with her PCP. I was able to meet with him and come to some conclusions (to get me thru the here & now) and have done some research on my own in meantime--reading Dr. Grubb's articles and books, going through forum info, but still have not definitively heard from Dr. Grubb. & I just seem to get more & more confused. Darn foggy brain!

I continue to have POTSY-world s/s daily : syncope or near-syncope, morning "shakes," extreme fatigue, brain fog, can't stay warm/get too hot, achy, nauseated to ravenous, BP & HR all over the place, thirsty all the time, drinking a moderate amount, but feel dehydrated. For some reason, 1 litre of IV fluids every 48 hours or so is keeping the s/s down. I'm still not quite feeling myself, but I feel much better than a few weeks ago. My doc wrote me an outpt order for the fluids HOORAY and I've not been hassled once double HOORAY (except for having to give the usual National Geographic Special on "Dysautonomia and its Common Causes, Symptoms and Treatments" to each new person I encounter. LOL) I must admit, that gets tiring. And even though I know it's important to teach to a willing audience, I'm sometimes too tired to go through it all every other day.I feel guilty about that.

I will be quitting my part-time job within the next week or so in order to focus on school. I thought it was going to kill me to have to tell my dad I couldn't work for him anymore, but he has been understanding, even compassionate and it has brought us closer in some regards. I just may have finally learned that I just can't do all that I used to. And I'm going to therapy to help me emotionally deal with having POTS and all it's little ripple effects a bit more solidly. I thought I had it down-pat after 8 years, but it seems a tweaking is in order, because like every 4th day or so I think, "Today is the day my cheese is going to slip right off the cracker." Maybe I'll get better than I am now again, but I don't know that I'll ever be the same. And that's OK, I know it is. It's just different than I planned. If I can finish school and eventually work part-time, that would be a goal to shoot for. And it seems like it will be do-able, eventually. Right now, my only goal is sleep and school. Thank goodness for spring break!

I have met with my school advisors and they are willing to work with me and are not gonna throw me out of school (well, yet, anyhow ). My grades/work is solid and they have said they can be flexible as long as I don't get any worse....gulp!! How can I predict that? My family is being super supportive, as is my spouse, as ever. I am hoping the reduced stress of not working will decrease my need for IV fluids, but if not, I will consider a port-a-cath. My PCP is onboard there and has been WAY helpful. I am grateful.

My PCP is having me tested for diabetes mellitus and running a 24-hour urine to make sure kidney function is still OK. (I had LOTS of kidney tests last year, so he doesn't think it's diabetes insipidus;he thinks it's probably related to the dysautonomia somehow that we don't understand yet). So, we still don't know WHY the IV fluids are working, but for now, I'm just going with it. Is it possible to have mixed-type POTS?? Anyone??

Here's where part of my confusion is: I was rx'd Cymbalta a month ago and though I gave it the college try (over 3 weeks) I felt AWFUL on it. Am only now starting to feel better after being off for 6 days. I just read Sef100's post about nor-epi and am wondering why Cymbalta was ever rx'd for me? I do HORRIBLY on SSRI's. It's also been suggested that I begin Procrit (erythropoeitin/epigen) but my when I read Dr. G's article, he said procrit wasn't good for my type of POTS. (Which made sense when I read it.....b/c procrit would raise blood volume and thus BP, which would not be good for me, cuz my BP is already off the charts w/o all kinds of meds....plus my H&H is A-OK) So??? I just don't know. I'm absolutely dizzied by all of this overwhelming amount of seemingly contradictory information. Anyone with any clues? I wish Dr. G's office would call me back.

Sigh. and I'm just so tired and feel yucky to boot. No answers yet. Still waiting. I know plenty of all y'all have been where I'm at now, waiting at a crossroads, and wondering..... Sad, frustrated, impatient, sleepy, irritated, curious, fed-up, ambitious and syncopal all at the same time, it seems. Is there an emoticon for that? Lol

Gosh, I didn't mean for this to be a diatribe. I hope you all continue to have peace, strength and more good days than not-so-good. Thanks for listening.

Love and light,

Lulu

Hi, theresa,

Welcome!

I am sorry I haven't been to Mayo....just wanted to say, "Hi! and welcome aboard!"

Someone here will have answers for you. Good luck!

Peace & light,

Lulu

Congrats, Claire!

And also let me say Welcome to the Forum! You will find lots of answers and paradoxically, more questions, and good support ppl here. Welcome to Planet POTS (well, almost....not that you really NEED to have an official dx, but it sounds like POTS to a lot of posters....)

I hope you find out what you need to know from your appt. And as another poster said, it may be bittersweet. I was so relieved to finally have a name to put with what had been going on with me. But, eight years later, I sometimes wish it had been a different name. There are many struggles with POTS, but I have learned a lot from having it, too. And met good ppl.

There are many stories of struggle and triumph in these pages, which have inspired and educated me. but you should feel free to ask any questions and post your own topics. I only joined recently myself, and everyone has been wonderful, with references or support.

Best of luck to you and keep us posted.

love and light,

lulu

Amy,

How awesome!! It sounds like you are getting somewhere with your treatment! I hope all continues to go well!! I've been taking clonidine since 2002 and it works great for me. I hope you find the same. Procrit is not recommended for Hyperadrenergic POTS(which I have), so i can't help ya there. It is becoming a treatment drug of choice for many POTS pts. So, GOOD LUCK! and keep us posted. Just a little FYI......

I take Celexa which is the same as Lexapro and clonidine.

Well, kind of, but Celexa isnt quite exactly "the same as lexapro and clonidine," which are from two different drug categories. Celexa, which is a surplus serotonin reuptake inhibitor (SSRI) and surplus noriepinephrine reuptake inhibitor (SNRI), works similarly to Lexapro, which is a surplus serotonin reuptake inhibitor (SSRI). However, the Celexa is like Super SSRI "Plus" b/c of the noriepinephrine uptake inhibition.

Clonidine, on the other hand, is a cardiac med. It is a centrally acting antihypertensive (reduces blood pressure AND reduces the amount of serum noriepinephrine. Celexa is out to increase the amount of nor-epi in your bloodstream and Clonidine to reduce it. Clonidine will not only lower nor-epi & BP, but HR, drastically, if not checked.

For me, clonidine works great. I take it twice a day ( 0.2 mg dose). You have to be spot-on with timing and taking this med, which is why the patch version is so much more recommended. (I'm allergic to the patch) Sometimes I take a half-dose in the afternoon of clonidine if my BP is running high. after years of tweaking, it seems i have the right combo for preventing most of the s/s of my POTS/NCS (day-to-day regulation, under extremes stres or illness I'd be MUCH worse without them). Believe it or not, i have to take 900 (yes 900) mg of Labetalol each day to control my BP. otherwise, i'd stroke out. but that's hyperadrenergic POTS for ya. The worst part about Clonidine is the dry mouth and the sedation, which I eventually became used to. I eventually got used to the sedation from the Labetalol as well. (Took me a few weeks on both counts) I take them TOGETHER to control my symptoms. So I don't know about one or the other on its own. But I hope this helps.

I also hope this clears some things up for folks about the meds. I double checked my nursing drug guides on the meds. No offense meant, Stacie, just wanted to be clear for folks. Hope you understand :-)

peace and light,

lulu

Lauren,

I sometimes get these, too....or something like them. Uually when I've been dehydrated and my mouth hurts a lot then add a food allergy. The other posters are right....check w/ doc or DDS and let us know.

Hope you feel better!

love and light, Lulu

Hooray! Ernie!

I hope this is the med you've been waiting for!! Keep us posted; we're all rooting for you!

Good luck!

peace and light,

lulu

i have a similar story.....when i first started getting sick, we had NO idea what was wrong and had seemily run the gauntlet of medical tests and Great Commands of the Body "You will faint, NOW!" etc... (HA! little did i know the pleasures that awaited me as NCS progressed to POTS, which has recently worsened for me!!!) but anyhoo, back in the seemingly-carefree "not knowing" days, people would ask what was wrong with me, & we jokingly (and naively) called my weird symptoms "Congo sleeping sickness," NOT AT ALL having even the TINIEST clue that a rare and often fatal disease called "African sleeping sickness (Trypanosomiasis) is REAL and very scary for many people.

we recently watched "House" on USA network and we're amazed & abashed at a pt's diagnosis of Trypanosomiasis.....AFrican Sleeping Sickness! have to say, after seeing that particular show and what that woman went through there are days i'm glad i only have POTS & NCS and *mostly* i get excellent medical care and have only come close to death once so far since my dx.

i keep a little list of things to be glad about in the Big Picture, especially when I want to throw myself a pity-party. #1: I am glad I don't actually have Trypanosomiasis. #2: I am glad Midget-in-Tutu syndrome came out after my diagnosis, because it sounds even sillier than telling people my autonomic nervous system doesn't work. Man, i think they look at me strangely now! What if I had been dx'd with M-I-T? Yowsa.

hope doctors can help. lol

peace and light,

lulu

Dizz-

Feel better soon!!! maybe all of us "surgers" can get together and sell our electricity to the utility companies!! forget solar power! POTS power!!

i'm glad you're not alone and have an appt with Bev soon. hang in there girl. try to stay warm--i've found when i get like that i need a warm/hot bath (hubby supervised so i don't drown) and out of the bath and immediately under an electric blanket on LULU-TOAST level, with a couple heavy blankets for insulation and candles to keep the air in the room warm and lavender (calm) scented. this is also the time that i reach for my ativan and just try to be calm. there is also an homeopathic remedy that might work for you called Dr. Bach's Rescue Remedy. it is safe and all natural, but of course, check with your docs.

hang in there, girl. you don't have to do anything but feel better and be calm. you're in my thoughts and prayers. be strong and focus on the light within you.

keep us posted, dear. i pray you feel better.

love, light and peace,

lulu

good luck, morgan!

our prayers are with you! i hope it brings you more freedom and peace of mind.

love and light,

Lulu

radha,

i believe i have seen iodized sea salt in some specialty markets. you can also order it online Iodized Sea Salt i use sea salt (regular) for some things and the iodized for others.

good luck!

peace and light,

lulu

wow, i've had some doozies of GI symptoms last year, but nothing like what you're going through, corina! Bless your heart! I hope you have some relief!! isn't there *anything* the docs can do to make you more comfortable? i will keep you in my thoughts and prayers, as i do everyone on this board.

i had horrible GI pain, all over. seemed to be from everywhere, gall bladder, spleen area, bowels, stomach, esophagus. had a bunch of tests done. more ct scans then i can cound, a pelvic ct scan (that was a thrill NOT) nuclear scans, xrays, lab work, EGD....couldn't find anything!! except lots of acid in esophagus. (GERD) so i got on nexium twice a day for that. i just figured it was an IBS thing related to POTS, since most body systems are affected. my PCP agreed.

i lost 60 pounds in like 3 months, drank ensures, gatorade. finally, the vomiting stopped. but i was still nauseated all the time. then i slowly began to eliminate suspicious foods from my diet.....which for me were high fat (even moderate fat) foods, dairy and vinegary or sour foods. i limit rich foods (like tofutti chocolate crunch cookie ice "cream") and have to eat small meals. i still don't eat as much as i "should" i just don't feel like eating a lot anymore. I am afraid of the pain.

you may want to check out ayurveda, an ancient way of eating for your health. it's extremely complicated, but it was a place for me to start learning about eliminating foods that might not make me feel good. there is a LOT of info out there on ayurveda, and it's not for everyone. you should consult a doctor before changing your diet drastically. but as a suggestion only, because it helped me considerably, here is a link to one of the more concise and well-organized sites on the subject. Ayurveda Holistic Online i am in no way a guru on the subject, but i think it is interesting and like i said, was a starting place for me, a different way to think about my body in context with what i've been taught as a patient and nursing student in western medical practices. this link is in NO WAY intended to bypass or undermine anyone's current medical treatment. OK, you guys understand that, right?

and I LOVED food. i was addicted to food. i still am, but the joy is gone for me now, mostly, because i miss what i used to be able to eat and get so frustrated trying to plan meals. the only thing that keeps me going is remembering that incredible pain, not wanting to ever go back, and knowing the new diet is giving me some relief. and checking out new recipes and having hope that the new diet will continue to work for me. i just can't imagine not being able to eat *anything* so, yes, i can sympathize, but only to a point, my sxs don't seem to be as bad, as long as i behave myself. i do get the "postprandial hypotension" after eating even small meals. have to be careful where i am when i eat, especially if we go out.

i wish you luck and relief. food is so intergral to a sound body, mind and spirit.

love and light,

lulu

Someone started a thread on feeling like the ground was moving underneath them.... Its the system, all of them, the medical, government, our society, they each have a hand on the end of the rug that is under our feet and they are yanking on it trying to pull it out from under our feet.

Are we ever allowed to catch our breath?

Amen, sister! And aren't we "easy marks?" We fall down so easily anyhow!!

hey, you fight them, j-9! as dizzygirl says: "Don't take no crud!!" you are in my thoughts and prayers for all to work out OK. you shouldn't have to give up what you've worked hard for because of illness. that's the whole purpose of these "safety nets."

Please keep us posted!! We are all behind you!

love and light,

strength and courage,

Lulu

Amy

I am so sorry for your experience! it is so disheartening and can really take the wind out of your sails, to say the least.

as your signature says, a journey begins with one step. you've actually made more than a few just with this doc, even tho you didn't get satisfaction. you know now who NOT to go to and maybe have gotten some ideas of who to go to.

do you have a PCP that could be on-board? I've been so lucky that mine is awesome. you may have better luck going with just a "plain" doc who will be the local person you need if s/he is open to that.

as frustrating as it's been, it's almost part of POTS itself. continue to be strong and know that you are supported here.

(do you happen to live in north central ohio? i'll give you my doc's name! )

wishing you strength, peace and joy,

with love and light,

lulu

i'm so sorry for your hurt from your family. as mentioned, many of us have had to deal with unbelieving/unsupportive family, but it doesn't make it easier when you're feeling bad and it's your own family! i hope you are able to work something out. you are very strong and resourceful, i can tell from your posts. just remember the tilt might not be as bad as you think it will be, but i agree with you, it's better to be prepared for the worst.

if i lived closer i would take you.

good luck and know that you are supported here!

love and light

lulu

good for you, ernie!

i hope you find a more sensitive and knowledgeable doc! i know what the other posters are talking about, too. i'm as symptomatic as i've ever been, but my orthostatics are fine and my vitals are fine. so i guess nothing is wrong........

with all the heavy duty heart meds i take, i don't think i could convince any doctor that i have hypertension or hyperadrenergic anything.....but i do! that's why i take the meds, duh! my BP used to run 180-200/100-120 now it's a steady one-teenish over seventy something. HR used to be in the upper 90's-120's just to say "hi" now my HR is in the 50's. i don't know what the freak is going on anymore. my body has started a coup.

i agree that our conditions are so sensitive that we change day to day and within a day. some people just really find this hard to understand....like why it's hard to get going in the morning or afternoon or whatever, but some other time that same day i feel fine! but it's true!

like i said, you don't have to be crazy to have POTs, but it helps (or as Janine says, you will be crazy eventually!) i want to be carefree again, and not have to be on ativan to get there. good luck, dayna! (and everyone else, too!)

love and light,

lulu

i'm also taking cymbalta, started at a 20 mg dose, then was upped to 40 mg. i don't know what this is supposed to be doing for me....i've been on it almost a month and feel worse!

anyone know the dilly on this drug? beverly just told me "a lot of dysautonomics do really well on it." when does that happen?

???????

lulu

Welcome, Rachelle-

i've had dysautonomia for 8+ years, but am kind of new to the forum. these folks have been wonderful and supportive--i am so grateful for this forum's existence!!!

I was really well-maintained for most of that time and recently i've had a set back! i go to school and work, dysautonomia not as bad as it could be, but lately it's really been pushing the envelope!

as has been told to me, don't spread yourself too thin and remember that you & your health are THE #1 priorities.

glad to have you along on Planet POTS!

love and light,

lulu

thanks for the kudos, y'all! I see my doc today (fingers crossed!)

but really, what's the silliest thing you've done since your dx either getting treatment or because you couldn't? I'm interested in some stories where we can maybe laugh at ourselves.....i know it's tough....but lately i've found that laughter IS the best medicine.

so bring 'em on!

love and laughs,

lulu

hey Kim-

celexa can cause "hypomanic" symptoms and disrupted sleep, while lopressor (metoprolol) is a beta blocker and generally makes one a bit sleepy. the combo of dropping one and picking up the other may be contributing to the problem?? maybe you just have to ride it out? in the meantime, you might consider a sleep aid to help you over the "hump." ask your doc. celexa is a great med, it'll take a few weeks for your system to get used to it though, like any SSRI. don't give up on it yet, is my suggestion.

i've been in that vicious (sp?) cycle too, where i wake up, it's not time to wake up, then i worry about sleep and can't sleep, worry more about not sleeping.....look at the clock and think if i go to sleep now, i'll get 3 hours sleep....if i go to sleep now, i'll get 1 hour sleep......if i go to sleep now, I"ll be LATE! it's rough! I hope you get your rest....it always makes POTSY World worse for me w/o good rest. (just another thing to worry me in the night:P)

good luck!

peace and sweet dreams,

lulu