morgan617

depends on the dose how slowly you should taper. ask your doc, but do not just stop it. sorry it is making you feel so crummy. morgan

oh glimmer, when someone comes up with the answers to your great questions, we will be on our knees thanking God. I only know about 30% of the time why i've crashed and burned. the rest of the time i'm laying on my couch asking myself how it happened and what did i do. there are just no real answers to why things trigger over the most seemingly minor things. who can't just sit on a couch and hang out. well, apparently we can't. if i talk on the phone more than 15 minutes i'm done for the day. hopefully this will not be a long drawn out thing for you. sometimes if i do absolutely nothing for a few days i will recover a little faster. i think we just have such fragile systems, that as easy as they are to trigger, the harder they are to get better. i guess an analogy would be how long it takes for an athelete to get into shape, and how short a time it takes to get totally back out of shape. i wish i could tell you of a magic bullet. if you do the salt thing and drink the power drinks just some extra and take it slow and easy. feel better soon! morgan

thanks runnergirl. i am so happy that you are improving, albeit not as fast as you'd like. stories that give us hope, even when we never know the cause, is good for all of us. thanks for sharing your story! morgan

geez, i'm not a doctor, but it almost sounds like some type of seizure activity. i would suggest you get in to see someone asap. also with the sweating, my symptoms have been having wild swings lately too, not sure what's going on there. but there many different types of siezures and you should be checked out. not trying to scare you or add one more thing to your list of a zillion already, but don't want you to get hurt. morgan

first you need to find out what is causing it...ie horrible cycles etc. the usual treatments are iron, B12, and folic acid. when i was very anemic, we are talking i could have had transfusions, my doctor gave me injections of iron because of my poor irritable gut. they were given in my back end. i got them once a week. the only side effect i had was getting little black circles on my rear. the shots are supposed to be given in a z track, which is a certain way you give shots that may be irritating to tissue or need to be injected fairly deeply. the iron is given z track so you don't get little black circles on your bum. i got them anyway. they were NOT painful and they DID go away. they were just funny looking, but then not too many people star gaze at my behind anyway, it spared my stomach and after just a few injections i felt so much better. my hemaglobin went from 7 (normal being 12-16 for females) to 13. iron is very hard on your gut. i could never take prenatals because of the amount of iron in them. so talk to your doctor about this. i know he will say it's not how it's usually done, but just tell him you are a unique and wonderful person who needs things done a little diffrently than the norm. good luck, oh folic acid usually does not bother the stomach, nor does oral b12, but b12 is usually given in the arm and is a very tiny shot. morgan

i'd like to add i tried accupuncture and it made me worse, then i went to visit my sister and she took me to hers and i felt great all day afterwards. so i know it can help if you find the right person. morgan

gee emily, a zillion pound bed and a zillion pounds of water. you are quite the heavy weight aren't you, lol. just kidding. i should raise the head of my bed too, because all of a sudden, i have to get up and pee every nite. it's so frustrating, because i don't sleep well to begin with. and my feet are swelling, which is going right along with the drop in my bp and heart rate..... hmmmm coincidence, i think not. morgan

dancing light cancelled one this month. it's probably filled, but you might ask them. morgan

i was a nurse for 29 years, so am very traditionally oriented. having said that, i do believe there are alternative things that do help people. having said that, i have a friend with terminal cancer who spent 6000 yes that's right 6000 in 3 weeks for some vitamins and iv fluids that were going to cure him. so be careful, there are sheisters in every field of everything. i include traditional doctors in this! btw my friend has less than a couple of months to live and is now completely broke. we just have to be wary and investigate. good luck! morgan

i find myself waking up at night with shortness of breath. when i had my last holter, it showed bradycardia when i sleep, so i guess i do. but i'm also very short of breath when it's high. feast or famine...lol morgan

time to see your doctor amy. how much is your weight fluctuating? i'm not sure how far post partum you are, but it is not normal to retain water. so call your doctor. Hayley, i don't take florinef, but believe it raises your blood pressure somehow. someone on this site can explain it to you. i have really high bp, so don't take those kind of meds. morgan

just keep bugging them till they get so tired of it, they do something. sometimes the only thing a woman has to hang onto is being a witch, (from delores claiborn) we just sometimes have to be very assertive, even if it irritates the doctor. it's his fault anyway. so go for it! morgan

very blue, please note that i did qualify my post with the fact that i have always been sickly. for some people, it just may be a post viral thing. like when some people get mono and it takes them longer to get well. i believe it will be a long time before we get to the bottom of what causes or triggers oi disorders. and everyone is different. when you talk about all the things you do, you are talking about things i have never been able to do, hence the wiring. if we really knew what triggers it, we'd be that much closer to finding a cure. working on a cardiac floor i saw lots of healthy very young people, who'd never been sick a day in their life suddenly out of the blue develop arrythmias. sometimes the doctors could easily see the problem and sometimes they couldn't. it could be something that ablation cured, or something they just had to learn to live with with meds. but sometimes they never figured out why, out of the blue, all of a sudden, these young people got sick. most of them were very athletic. this a fair amount of years ago and they aren't any closer to finding answers. i was not trying to depress anyone or take away anyones hope. i was simply stating something i believe to be true. some of us are just wired wrong from birth. i pray that you get well as quickly as you got sick, and i've seen that happen too. i don't give up hope very blue, but i also refuse to set myself up for the continual frustration of relapses. please realize i have been sick for close to 50 years. nothing that plagues me now has had a sudden onset. so we are very different. i apologized if it seemed like a blanket statement. i believe myself to be realistic about my own disorder, but can not presume to diagnose or wet blanket your hopes. i apologize again. we were just giving our opinions. i didn't take anyones personally and am sorry that you seemed to do that with mine. if i gave that impression, it was not my intention. morgan besides there were alot more depressing posts on there than mine and i respect those peoples feelings.

the pediatrician is the best person to ask. adderall is not addictive, that's supposed to be the draw to it. it replaces drugs like ritalin. but if it passes through the breast milk, i would be hesitant to use it. if your pediatrician is not sure, go by your gut. or call a pharmacy you trust and ask to talk to the manager of that pharmacy. they know a lot and have a lot of references others don't get to see. adderall is pretty new, maybe your doctor isn't very familiar with it. sometimes they just don't take some things into consideration. it may never have occured to him that you breast feed. the best thing to do is ask. morgan

sending, prayers and positive thoughts your way. what a terrible season this has been! will pray that it swerves and heads to the ocean . morgan

jessica, i guess all i can say is, you will find out soon enough if you are doing too much. i am so glad you are feeling so much better, but i would caution you not to try to do everything... you may pay the price and there's no worse feeling than a relapse when you've thought you were all over it. i would just add things gradually. kind of like titrating a medicine. do a little more each week and see how it goes, then when you reach your threshold, stop. i wish you the best with this, you sound very happy despite that little worried tone! lol. good luck, morgan

try and keep your feet elevated as much as possible, but i would discuss it with your doctor. do you weigh yourself everyday. that's a good way to tell if you are retaining water. and drinking water is the only natural way i know to lose it. it's common to retain a little post partum but it should clear up fairly quickly. morgan

i have alot of tremors in my hands, especially if i try to lift or hold anything for any length of time. i get really bad muscles twitches in my legs and i have had my husband take my arm and just walk me out of a store and put me in the car to wait for him. i don't even say anything. he says he can just see me wilt and look like i'm going to collapse. i have such poor coordination in my hands it's not even funny. i have to proof read everything i type. so i guess, it must be part of the pots. i have never fainted either, i tried to explain how i feel to my doctor. i just told him i feel like if i don't sit or lie down, i will just fall down because my legs are going to crumple. is that how you feel? i am sorry you seem to be going through a really rough spot here. it sounds like you may have really overdone it and it just seems to take such a long time to recoup. hopefully you can take some time to just rest and take care of yourself. hope you feel better soon. no more parties for awhile girl! morgan

i am really glad you are seeing someone. when you find the right person to talk to it can make a world of difference. but you do also need to see if there's a connection between your meds and feeling down. my son was started on a beta blocker for his migraines and actually got to the point he was having suicidal thoughts! thank God he came and talked to me about it. within a few days of stopping the med he was much better. that being said, i still believe you can not be chronically ill and not get sad and depressed. and it sounds like you have a lot of stuff going on right now. it is so hard when you don't have a lot of familial support. it's like, if my family doesn't get this, how can anyone? that's where counseling comes in. you have to be validated, no one can go through life and not have validation. my doctor said he'd have a hard time believing i was sick if i wasn't sad and depressed. good luck and go with your gut. you can tell pretty quickly whether someone is going to be able to help you if you learn to trust your gut. morgan

pacemakers can be very beneficial, but wouldn't get one unless my low rates were symptomatic. it's a really easy procedure to get one and they've really got them down to a fine art. but it is invasive and they do wear out, so batteries need to be changed periodically, as do the lead wires. if it helped i'd be all for it. i am starting to get some pretty big dips in my rate, so have discussed at what point i would get one with my doctor. the problem i guess, is you just never know whether somethings going to help or make things worse. everyone was convinced that if i had ablation for my tachycardia, i was going to be a new person. well i'm a new person alright....on disability. if i had to go back and do it over, i would have forced my cardiologist to call some autonomic facilities and talk to them. i guess that would be my recommendation to you. unless he's already an expert in pots. good luck! morgan

emily, i stayed on the .05 for a little longer than a week. more like a month. it's funny, because i saw my doctor yesterday and he put me on a clonidine patch! the lowest dose is .1 and that's what it is. he thought i wouldn't have the peaks and valleys you get with the pills and if my bp dropped like it sometimes does now, i could take the patch off as opposed to just waiting for the pill to wear off. the only side effect i've had is a weird taste in my mouth. not even the fatigue increase i had with the pill, so maybe it would work for you too. the patch is very tiny and easy to hide. and it hasn't irritated my skin so far. you wear it for a week then take it off and put on a new on. so it's pretty easy too. i am really hoping this one will help even things out. good luck to you with it. keep me posted. morgan

emily, it was while we were having discussions on benzos as i recall. that is such a touchy subject. i am a person who believes that different things work for different people and we can tell of our experiences, but shouldn't terrify or tell people what they should and shouldn't take. i think sometimes comments made on these sites will cause a person to feel ashamed or afraid to take something that can actually help them. i was trying to make that point by saying ANY drug not taken properly can have serious consequences. there are doctors who will push drugs on people when it is not in their best interest, but anyone who's dealt with this illness knows it's pretty much left up to us to get information. i never get my info from just one site either. that is just the forward to what i said about tylenol. i take it too. over 4 grams of tylenol a day can be lethal. it is very toxic to the liver. it is insidious too. it is not a quick thing. so my point was, even otc drugs that people presume to be fairly inocuous can be just as or even more dangerous than drugs you need scripts for. i am not saying you shouldn't take tylenol or even not take it every day. it is the amount you take that can cause problems. taking some everyday should not affect people not allergic to it, but over 4 grams and your liver has a very hard time metabolizing it. so if you take 500 mg tabs, it's not a great idea to take more than 8 a day. so that was the point i was trying to make. sorry if you misunderstood. this is a very stange illness and what works really well for some, is like poison to others. we have to decide individually what it is that does work and doesn't and unfortunately, we have to do a lot of our own research. hope that makes it clearer for you. so if tylenol helps you, that's great. it helps me too. morgan

my dentist said that people who are chronically ill tend to clench at night. there's this complicated thing that the molars do when they clench that affects the nerves and therefore causes ear pain, jaw pain, headaches, and toothache. i thought i needed to get a tooth pulled and it didn't even have a cavity. she made me a little device for my front teeth that i wear at night. it doesn't allow my molars to bite. it's called an NTI and it has really helped. the only downfall is your mouth gets really dry. but it has really helped my ear pain a lot. my son uses it for his migraines and has noticed a difference too. i'm sure it's not for everyone. it cost 100 dollars, which considering how much i've paid all the doctors i've seen is chicken feed. so it was really worth it to me as my ear has been better pain wise. i always felt like i was getting an ear infection. it doesn't help my menneires at all, but i didn't expect it to. just thought i'd throw this out there. it was just fda approved to help with migraines, so there must be something to it. morgan

i have actually been definitively diagnosed with meneires, and there is a big difference in the dizziness that comes with oi and the vertigo that comes from meneires i guess if you really do have both, it's pretty easy to tell apart. the downfall with this is, however, i can't do the usual meds for pots as it exacerbates my meneires. what a conundrum. but such is life i guess. morgan

i had to wait 6 months, but got approved on my first try. no one you talk to on the phone is going to know anything. but i did get a call when my approval came thru, so don't give up. calling them won't make a bit of difference, they will just get to you when they do. it's very frustrating. morgan