maggee

hi Sophia,

here's a long shot for you.....as was my prob....

i take inderal[propanolol]..5 mg/5x/day.

been on it ---- ummm---bout 6 mos, give or take...

***on DRUG CONTRAINDICATIONS===FOR ALL BB'S I'VE TRIED===SAYS==='NSAIDS'...LIKE MOTRIN...====>>>ASK YOUR DOCTOR, YADA......

well, when i was on motrin===my BP would usually go high on me---usually in afternoon /evening....

.......and i'm going "what the *****?????" ===as, i've neverrrrr had high BP....til started BB.

**so---bout a month ago.....after learning motrin and nsaids....can increase BP.....makes u retain water...yada===>>>

>>>>>>i decided to come off motrin.....which was scary---as knew nothing else i could take for pain.....but did it.

****since then===>>>NO high BP episodes.

got some darvaset for pain...which i take 1/day....and my pain has decreased also.

just thought i'd throw this out here---in case u....or anyone else...on BB"s and NSAIDS........

........may find this applicable to you

((((hugs))) to u, and all.....

Maggee

p.s.===YOOOOOOO, MAGGS!!!!!!!

hi Julie,

glad u not of the 'estrogen-needin-age' .....lol!!!!

**go to 'my controls'.....then scroll down on u left----to 'edit my signature'....

>>>>that's where you write your hx/meds/yada, hun....

don't feel bad....took me a long time to figure it out too!!!

best regards again!

Maggee

Hi Maggee-

Thanks for your reply. No, no estrogen here- yet. I'm sucha newbie, I haven't figured out how to write my DX, meds,

Gratefully,

Julie

hi!

this is a really long shot....i know.....

but my mom had samo thing.....and it was due to being on premarin[synthetic estrogen]......longgggg term.

went away--after coming off the synthetic estrogen.

had to reply, as couldn't see your hx..or meds...etc....

here's hoping someone has an answer soon for you!

((((hugs))))

Maggee

Wow, Melissa-

When I saw weird skin stuff under your list of DX's, I wondered. Were any of the big erruptions in your arm pits? Most of mine were. One was on my forearm. Mine are gone now too and, thankfully, my autonomic issues are not bad right now. Let's hope they don't come back for either of us.

Julie

oh my goodness. i had what sounds like pretty much the same exact thing at one point last year. i had smaller more hive-like rashes on and off for months on end but had the "eruptions" at one point and it sounds very similar to what you're describing. for me this was at a time when my whole system was pretty wacked out, i was malnourished (b/c of GI issues), etc. i also lost a lot of hair around the same time.

both of my rashes were biopsied and the smaller/hive-like rash did come back as an allergic/histamine reaction of some sort but the other biopsy showed nothing conclusive, though i still have several scars from it on my arms. before the biopsy they actually were thinking that it might be the skin variant of celiac disease (dermatitis herpetiformis) but that ended up not being the case. thankfully i haven't had either of the rashes now in over a year though we don't know what changed to make them go away. i'm in worse shape now health-wise other than my nutritional status (since i'm on TPN) so part of me thinks there was some relationship to that for me.

another one of those mysteries....

melissa

hi!

this is a really long shot....i know.....

but my mom had samo thing.....and it was due to being on premarin[synthetic estrogen]......longgggg term.

went away--after coming off the synthetic estrogen.

had to reply, as couldn't see your hx..or meds...etc....

here's hoping someone has an answer soon for you!

((((hugs))))

Maggee

d.....

me again

it is dangerous ---just to stop---so i've read..........!!!!!!

when i came off metaprolol....[the wicked one....!].......i waited 24 hours.....and then started my low dose of inderal[5mg].....as i wrote u--my personal regiment....with it===low doses...thruout day.

hate to say this, but not really....... >>>>>>I THINK YOU NEED A NEW DOC!!!!....think u already know that......yuppppp!

on the inderal.....if i can function...i don't get depressed----my own feeling/experience.

but think cuz i do the low dose thruout the 24 hours....yada....

....AND----I DON'T HAVE THE EERIE SUICIDAL THOUGHTS, WE DISCUSSED as with metaprolol[lopressor]....omg!!!!!

so, lay low.....until u get another BB......and then try new one with a low dose....

*****like dizzy and others stated>>>>>----can be VERY DANGEROUS....JUST TO QUIT THEM!!!!

......SO I'VE READ.....anyways.....

let me know whats happening,hun.....

am concerned.....

call me if you want to.....

and if you happ to get inderal....get the 10mg pill.....not the extended release---which i think is 60mg/pill [no wayyyy-for me......lol!]

i be on the run next few days....but will get your messages...if u write or call.

do whatever u got to do....to get your bod.....to a safe place....plzzzzzz

(((((hugs)))))

Maggee

if anyone knows DSM3KIDZ [ Dayna ] personally.......please PM me.....!!!!

asked her to write or call me [ after i received a PM from her ]

>>>>>...late last eve or this morn...and not hearing from her.

am very worried....!!!!!!

thx...

Maggee

oh my gosh.....

am laughin my butt off @ some of your replies.....

thanks!!!==we all need to laugh so very much.........!!!!!!!!!!!!!!!!!

it will help me say something----other than FREEZE WITH THE HURT.....perhaps, next time it happs to me...

so sick of people in general---who have the dang audacity to say anythingggggg---to anyone!!!!====in regard to how they look---or what they wearing....or WEIGHT---OR WHATEVERRRRRRRRRRRRRRRR!!!!!!!

SICK OF THEM===PERIOD-END!!!!

thx for the topic...as know we all go thru this crap---like we need it??????---on top of everything else ------oh myyyyyyy!!!!!!!!

makes me sooo angry .......and anger===is really equal to=====hurt....which i find to be true.

got to toughen up, e1====and practice on our replies.......instead of clamming up and lettin them sink us deeper into our holes....

nooo more....enuf's enuf!!!!!!!!!!!!

the 'SQUASHED TOMATO FACE'----IS A CLASSIC!!!!!!!----as were the rest===!!

MADE ME LAUGH SO HARD.......

again, thx to all.....

let's go for it, my friends!!!!!!!!

((((hugs)))))

Maggee

sara,

read this recent post.....andd replies >>>>>>:

"First Month On Beta Blocker".

The topic can be found here:

http://dinet.ipbhost.com/index.php?showtop...view=getnewpost

hugssssssss!

maggee

DAYNA,

learned one thing the hard way-after 54 d***** years==='those who b*****>>>>>>>-get served..'.......///sad to report.................!!!!!!!!!!!!!!

call that a****** doc.and tell her u want to try inderal...or whatever.....else......

but metaprolanol made me such a b****** and irritable.and again-such horrible depression...almost suicidal!!!!!!!!!>>>>>>.and eerieeeee thoughts.it was something i never went thru b4..>>>>>>>>and been thru some bad med reactions.........omgosh!!!!!!!

go for it g/f.......!!!!!!!!!!!

we got nothing to lose but our lives..and more of ourselves!!!!!!

it should be no skin off her butt-what beta blocker u try......

again-i take inderal.5 mg//5 x/in 24 hour period.low doses, on reg schedule--

**********reg schedule important w/beta blockers.

so-25-30 mg in 24 hours-however u want to cut it up...

i now doing 10 mg morns-as morns worse tachy....and then 5 mg increments rest of the 24 hour period..perhaps-4-6 hours apart-or 8 at most.

assertive has not been in my vocabulary.b4.but is now!!!!!!

try????!!!!!!!!!!!!!!!!!!>>>>>>to go-for-it, hun!!!!!!!!!!

good luck-let me know if u do-and pm me re:inderal.if you got q's.........or anything.

am here.....(((hugs))))))

maggee

dayna,

me again

metaprolol is same as lopressor[read my former post.].......

,and is same as toprol xl-but toprol xl is extended release form of lopressor.

i agree with morgan-that not all beta blockers are created equal!

some beta blockers are deemed 'selective'.others deemed 'nonselective'.....and i do not know what that means.

do know meteprolol is selective..inderal is nonselective.and i'm doin ok w/ inderal.

hope this helps in some way,hun!

Maggee

hi Claire!

i also got severe neck, thoracic pain...along w/ other joint pain..and fibromylagia.

just wanted to let you know==that am doing b-12 shots 1x/month....and has helped with pain alot.

doesn't take it allllllll away....but quite a bit of relief ...as any relief is GOOD, needlesstosay!!!!!!!!

good luck,hun...get better!!!!

(((hugs)))

Maggee

hi!

i do have one..dx'ed on mri jan. 2006.

do not know yet==if it is related to pots / dsyautonomia symtoms i've had for years......as do not get to see pots specialist til feb. 2007 [dr. grubb in toledo,ohio].

rechecking adenoma in december....to see if it is bigger.

sometimes we have...and have had these for years...and they remain unchanged..so they tell me.

they do not want to do anything for them......unless necessary clinically.

i am anxious to know if any relation to dysautonomia===believe me!!

please let me know if you find out the answer before i do!!!!!!

i will post, if and when i get the answer.

best of luck!!

(((((hugs)))))

Maggee

hi dayna,

inderal....5 mg/ 5 x /24 hours.....is only one that i can tolerate so far.

small doses..spread over 24 hrs>>>..is my answer.

so far, cannot tolerate the ssri's....so am doing fair with inderal beta blocker.

lopressor--was the worse!!!!!--for me and causing depression and oh soooo eerie thoughts--was horrible!

best of luck on your decision....(((hugs)))!!!!!

maggee

I CAN'T LET THEM USE===epinephine....or xylocaine.

but, my first exraction---i was petrified---but tooth out in 1 1/2 min...no prob.

its the dang drugs we afraid of...as usual

***just wanted to let you know-the extraction itself, turned out to be the easy part....MUCH TO MY ANTICIPATORY SURPRISE!

oh my.....

good luck hun! and>>>AND>>....know the feeling of putting off anything i can...as so dang hard to think we can even make an appointment===arghhhhhh!!!!!

let us know how you do!!!!

{{{{HUGS}}}

Maggee

ps===YO MAGGS......:):)

bec....

think i wrote b4...but i've tried==toprol xl, betaxolol, tenormin, and lopressor[same as toprol xl, but not extended release].

am now tolerating inderal--5 mg/5 x/day........[low doses thru 24 hrs]

only diff i know---is inderal is 'nonselective'....and others above are 'selective' beta blockers.

can't tell you mechanism of those two descriptions...tho'...

all i know...is lopressor was THE worse====i was full of extreme depression...and very eerie thoughts====was horrible!NEVER BEEN THERE....BEFORE!!!!!!!!!!!

just thought i'd let you know what one finally is tolerable to me.

sooooo sorryyyy bout your vacation, et all....really $$^##&&'s!!!!!!!!!!!!!!!!

we are weary...and i am sorry, hun

let us know how you are....when you up to it!

(((((hugs)))))

Maggee

oh my.....so sorry with regard to crap w/docs

...and what you are feeling like,hun

just a thought----->that much fatique can be , to my knowledge---can be related to low thyroid....>>>>>hypothyroidism.......

just my 2 cents worth......

any chance from your hx/blood work done-not done==that it it could be?

(((((hugs))))

Maggee

hi again:)

toprol xl is the extended release form of lopressor/metaprolol.

just a personal experience FYI RE:lopressor/metaprolol....

>>>>i took 12.5 mg...and sometimes that would be all needed for HR control.

But>>>caused me terrible depression, and what i would describe as psychotic reaction also....eeerie thoughts---just intolerable!!!!!

knew it was the drug....as am not clinically depressed...and never had psychotic reaction....like that with any drug

maybe, perhaps, try even lower doses thoughout the day....as you are already trying....???

well, we all so different with tolerance/intolerance to any drugs, but wishing you well in feeling better soon, and hope the metaprolol soon is your answer.....and the side effects===get lost!!!!!![ ]

(((((hugs))))

maggee

hi kel!

i tried lopressor...also.

took 12.5 mg 2x/day....and tried to give it time...to get passed the increased lethargy and psychological effects.

NO GO FOR ME........

i always, especially in morn...take BP/HR....to see if i need to get my BP up w/salt intake...

before taking a beta blocker, to lower tachycardia/heart rate.

AM ON BETA BLOCKER INDERAL NOW...LOW DOSES...AND STILL DO SAME THING.

thus--- I need to make sure blood pressure high enuf before taking beta blocker, as they are blood pressure meds.

i had hopes of tolerating lopressor, but was one pill..that for better words...made me veryyyyyyy depressed==="out of it"!!!!====almost what you call psychotic...with eerie thoughts...>>>>>

>>>>>i could not control..... ..awful!!!!!!!!

Never had that experience with any drug like that!!!

i do not have clinical depression, ,,,,,just the the normal lows we all feel due all the effects this disease has on our lives.

let us know how you do with doc.....and best of luck!

(((((hugs))))

maggee

hi Dayna!

i am on inderal/propanolol....and i felt like a worn wet noodle....for prob a month or more.

i still need to nap or rest on and off...but the above EXTRA intense feelings of lethargy...have passed.

i also take small doses every 4-5 hours during day...and another small dose @ bed.

that works best for me, rather than large doses.

LARGE DOSES WOULD SEND ME TO BED...ALL DAY....as would lower my BP and HR TOOOOOOOOO MUCH

i also take small dose of magnesium/calcium supplement...with each dose..as well as putting a potassium rich food in me with every dose...like a banana with pecans, for example-or some tomato juice with some cheese.

not a clue if this is important or not though

i tried tenormin, toprol xl, lopressor, betaxolol....and each had some side effects i couldn't tolerate even short term, but stuck it out w/inderal....and thus far, tis only med i have tried that i can tolerate--to help me w/POTS.

best of luck with the metaprolanol....and hope i helped in some way.

PM me if i can be of more help possibly!

((((hugs))))

maggee

good for you, Amy!!!!!!!!

way to go....and oh---so much work!!!!!

a friend said to me of late===='it's time you all hit the OPRAH SHOW'...to get this info out to general population...and.....doctors....or whoever!!!!!

i agree!!!!!

i know we are all so tired of this, not mentioning the fact of being disabled and becoming financially depleted====and cannot get help??????

how the heck are we suppose to eat, pay bills, exist.....without working?????

what an atrocity, to say the least!!!!

if only, we were able to MARCH, HUH????

i believe we are all angry...and rightfully so===and so-o-o-o-tired of being in prison, so to speak....due to the apathetic demeanor that is thrown at us----in every which way, but loose!!!!

i can hardly get thru a bath, let alone go to the OPRAH SHOW, but it is a fabulous idea!!!

enuf is enuf, all....!!!!!!!!!!!!!!!

again===way to go Amy!!!!!!!!!

((((hugs)))))

Maggee

hi!

lthomas521 posted reply on research from australia...regarding anxiety and POTS, and for the life of me---i cannot find it.

was within the last week sometime.

thought for sure i had saved it, but can't find it :0((((

perhaps, you can PM her??

Maggee

hi!

just posted this reply....on another subscription....and perhaps it may help u, jacquie??

also, ever try OTC EMETROL?NO DRUG INTERACTIONS...ETC...just a sugary liquid...that for life of me---i don't know why it works so well!

anyways, in regard to below...which i'm going to copy and paste......====read it...and then keep in mind, that when we go into hypoglycemic bouts....caused by insulin siurges...we get nauseated----along w/ the other pots symtoms---from increase i adrenaline.

my experience...and conclusions only,,,,,from what i read and found to be true:)

heres the info:

try:

****come off all refined sugars!===cake,cookies, ice cream..etc....

****if you eat fruit----balance it out with pecans, or low fat cottage cheese, or protein of some sort==as need to balance carbs/proteins in a 2:1 ratio.

saying this, as i read in dinet info===that w/dysautonomia....we have metabolism prob----such as===when we cause INSULIN SURGES----like by eating too high refined sugar/carbs==>our bods can go into hypoglycemia episodes....AND ALSO WE PRODUCE MORE ADRENALINE---CAUSING MORE POTS SYMPTOMS.....[and NAUSEA!]

ALSO TRY--if u can....get some high quality virgin coconut oil...and eat but a 1/2 to one tsp. of it before you eat anything===which apparantly cuts down on the insulin surges.

OH---REMEMBER TOO>>>...SMALL MEALS....ON AND OFF ALL DAY,HUN:)

just my interpretation of what i read, and doing it helps me control my symtoms.

let me know if it helps you any, hun!!!!

selbypal@comcast.net

((((hugs)))))

maggee

hi susan!

this doctor maze...a dang nightmare.......

we are all there..or been there....at sometime...for tooooo long!

anyways, wanted to tell you what works for me:

****come off all refined sugars!===cake,cookies, ice cream..etc....

****if you eat fruit----balance it out with pecans, or low fat cottage cheese, or protein of some sort==as need to balance carbs/proteins in a 2:1 ratio.

saying this, as i read in dinet info===that w/dysautonomia....we have may have metabolism prob----such as===when we cause INSULIN SURGES----like by eating too high refined sugar/carbs==>our bods can go into hypoglycemia episodes....AND ALSO WE PRODUCE MORE ADRENALINE---CAUSING MORE POTS SYMPTOMS.

ALSO--I try to....get some high quality virgin coconut oil...and eat but a 1/2 to one tsp. of it before you eat anything===which apparantly cuts down on the insulin surges.

just my interpretation of what i read, and doing it helps me control my symtoms.

let me know if it helps you any, hun!!!!

write me a PM or email if you want more info

((((hugs)))))

maggee

your so welcome,hun.... !!!!

never been on florinef....

but was on cortef...a steroid..for possible adrenal problem.

know, also, bout florinef...is got to eat salt with it...so i've read...[?]

i used to eat salt enuf for a cow....lol!....but since i've been on beta blocker-inderal...i don't need as much salt....prob 1/10th of what i did before.

my uneducated conclusion==is some steroids make u retain salt...thus increasing BP and blood volume.

my observation, only, as, cortef did that to me also....but had no effect on tachycardia, as it is used for adrenal probs.

off it now...i hope forever.

endo said...florinef...not as many long term side effects, as many other steroids.....if we want to believe him????>>>LOL!!!

JUST DUNNO, who to believe....as we are all so tired of so many doc's....yada...giving us meds, and uneducated directions--or no direction.

anyways, let us know how you do, futurehope!!!!...with florinef...!!!!

i'm going to see dr. grubb...but got to wait til february...so Lord only knows if florinef is in my future

(((hugs))))), again hun....have a good nights sleep, i hope...and a better than average day tomorrow.

[our prayer, each day....]

Maggee

HI!

dont' know much bout blood volume...

but just wanted to give my 2 cents--regarding being on florinef:

it is steroid--and you need to increase your potassium/magnesium/calcium--as drug will deplete you of these.

i think best intake of potassium---in food sources.

know bananas, sweet potatoes, tomato juice high sources...but do web search--and you can find list for potassium rich food.

if taking prescription==potassium comes in MEQ'S---AND 1 MEQ == 75 mg of potassium.

so--10 MEQ==750 mg....and 20 MEQ==1500 mg potassium.

i read on net...we need bout 3000 mg potassium/day....but i do not know for sure.

((((hugs)))))

Maggee

Okay, the doctor's secretary called me with the results and said there is a 10% deficit in my blood volume test.

I know from reading this forum that I should have three results, one for total blood volume, one for red blood cells, and one for blood plasma. I asked her to fax me the results so I could see them. (She needed to get them off of the doctor's desk. That's why she didn't know the three scores.)

She also said the doctor is willing to prescribe the fluorinef if I want it. I said okay.

I know fluorinef has been discussed MANY times before. I'm being lazy here (in not doing a search).

If you take fluorinf, what is your dose and how are you doing? There are probably as many different answers as there are patients taking this med. I just want to know how you are all doing? Are you taking a potassium supplement with it? If so, what brand, what dose.

Thanks in advance.

P.S. I feel vindicated. I'm actually happy to know that some numbers in a test came out abnormal. After all, how many people walking the street could lose 10% of their blood volume and feel all right? The question I now have is WHY? How come my body does not make enough blood? So weird?!

Nina,

great reply/post!!!

....but as much as i've read,yada...i still can't easily explain what happs to us/why/how==POTS?????

WHAT ACTUALLY IS CAUSING THE bp to drop upon standing?

do we make too much of norepinephine and adrenaline?

read bout the 'spillover' of these 2 into the bloodstream....

if you kindly would, and have the time...

could you give us your best shot at the basic mechanics happening....in a POTS attack....and also a panic/anxiety attack...

.......would be so much appreciated!

[ i actually couldn't tell you the difference, as was dx'ed years ago with 'anxiety disorder' label.....and PROB HAVE HAD POTS ALL THESE 30 YEARS...(((( ]

[ARGHHHHHHHHHHHHHH!]

you seem to have an awesome understanding of it all....which i am so eager to learn....especially in the nicely brain-friendly way you seem to have of explaining things

thanks in advance, Nina....

((((hugggs))) to you, and all today!!!!

Maggee

Sally, actually, the doc who said it's "fight or flight" isn't that far off the mark...

fight or flight involves the body pumping out epinephrine in response to an emergency... sending blood flow to the major organs and brain quickly and speeding up your heart rate.

For some of us with POTS, this is what happens when we're upright and the blood pressure drops: the body gets the neural signal that there's an emergency because the brain's blood flow is dropping as the bp is dropping, and speeds up the heart rate by sending huge amounts of catecholes (including epi) into the blood stream in order to get more blood up to the brain, heart and lungs.

and, those with panic attacks have the fight or flight response for things that most of us don't respond to; some here have both panic attacks & POTS.

Nina