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maggee

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    At present, in limbo-land=SMALL PITUITARY benign adenoma w/adrenal insufficiency??....And POTS....??<br /> <br />***now trying meds for POTS..<br /> >>>no go w/lexapro,paxil,tenormin,toprol xl, lopressor<br />**5 long years..symtomatic...incapacitated<br />**5 long years of doctor hades-land..!<br />**post hyperthyroidism surgery,hx mononeucleosis, hx severe drug reactions, hx med intolerance and general anesthesia.<br />**menopause , cervical/thoracic spondylosis 20 yrs, fibromyragia/CFS, venous insufficiency-legs, othrostatic hypotension/tachycardia 5 years.<br />**symtoms worsened post general anesthesia<br /><br /> Salt w/food/water when needed,water all day, eat small meals, avoid sugar, balance carb-protein intake, avoid hot environments-hot showers too! <br />Use himilayan mountain salt only:0)<br />Compression hose-a def!<br /><br />meds: xanax for many years for 'anxiety disorder'->>??<br />[does help w/heart racing tho'!]<br />motrin,natural progesterone/estogen, inderal 5mg increments 1-5x /day for POTS, B-12 shot 1x month for FM/CFS/joint pain.<br /><br />so great to find this group-God's blessings to all of you!<br /><br />"May you, and all those you love, be so blessed and fortunate - to be surrounded by people who will help you get untangled from the things that are binding you. And, may you always know the joy of giving and receiving gratitude. I pass this on to you, my friends, in the same spirit"

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  1. hi Alicia, it sure gave me severe depression, and--- for the one and only time in my life---made me have suicidal thoughts. was HORRIFIC! -maggee-
  2. nikki, i use transdermal magnesium oil or gel better utilized by bod, so they say ancient minerals brand--say is best--but expensive. i bought www.healthandwisdom.com brand believe its same thing, but much cheaper can read alot about it there also. does calm my system....great for adrenals, and much more also, i drink a hot drink--called BalanCe at www.vrp.com has high vit c--gr8 mag--gr8 calcium...and---makes you sleepy........@ bed...or i use during day if i am overly stressed--helps! common overview--we are all mag deficient! getting mag into bods---will improve alot of things.....:0) read, hun.......:0) write me privately if i can be of further assistance paljoey@wowway.com -maggee-
  3. hi Linda, i have belonged to a yahoo group---for thyroid-iodine issues for years. learned alot--just reading.... http://health.groups.yahoo.com/group/iodine/ ***try above link to join...... then try this for basic info: http://health.groups.yahoo.com/group/iodine/links the thyroid med of choice was ARMOUR [natural from pigs] not available in US anymore-- unless made by compound phamacist....-but now---replaced by "NATURETHROID" i remember one lady getting armour from a canadian pharmacy callled UNIVERSAL DRUG [prescription needed, i believe.....] SOME PEOPLE need both iodine supplementation--with natural thyroid hormone. some just need to make the journey of iodine supplementation. if you are in michigan, the recommended top-notch doctor to see is Dr. David Brownstein. his books are great also. [google him....] do know it is reiterated--that one must regulate the adrenals...before regulating the thyroid, is feasible....?????? most of us are iodine deficient---as well as magnesium deficient---so it has been said over and over and over... magnesium oil--used in baths--foot baths--or placed on skin for transdermal===is implicated to help heal the adrenals---and much more! another site to read is www.stopthethyroidmadness.com [i think that is it???????????} i would--if i were you---find a doc on the iodine/thyroid group list.....and start there. if you are in arizona....a Dr. Mark Starr is phenomenal also. you can listen to interviews w/ him... http://naturalsolutionsradio.com/node/25979 ...and he has put out a great book also. all i know--is most people have trouble w/ synthetic hormones===which only replace--or try to replace===1 of 4 thyroid hormones. very complicated integrated circle===thyroid, adrenals, magnesium deficiency,iodine deficiency. hope this helps you get on a better journey. we have so many battles --just w/ dysautonomia, but needlesstosay----any other insufficiencies that can be rectified must/would increase our functionality and help us feel better???????? blessings, Linda -maggee-
  4. niki, too cute---your emoticon's -- describing US LOL! BUT- so ughh-ly -- and 'tis the truth for the 'day in the life ' of a dysautonomic! am in & out of UGH'IN every day, and thankfully--some days less than others :0) i especially UGH over doc's hate to go to any anymore. don't know which is the worst===the physical part of this syndrome to endure??...or the emotional beating we take from doc's and from people due to our inability to plan anything in life..??????? hey! don't ask me to that wedding in April--k???????? i don't know if i can take a bath TODAY...or if i can stand in the next hour---let alone, wtheck i will be like on April something, 2010...! don't want to reply yes...and possibly waste your money on that wedding dinner just being respectful of ya---and only WISH I COULD JUST CHECK 'YES' on that RSVP....! if ya only knew how blissful that would be for me.............. if, only...... pssstttttt!-->>>inadequacy that is misunderstood..reallyyyyy hurts , huh? UGH--YESSSSSSSSSSSS! KK..am done a'rantin'.....lol! let me know if the smaller doses help, niki! sure do hope so i going to try to have an "UN-UGH" day--and go for the bath and the grocery store.. !!! wishing you the same, today, Niki -ugh||unugh'in Maggee-
  5. hi niki, don't know your dose or symptoms, but i have been on it for quite awhile. but---i can only tolerate 5 mg doses...3-4 times per day. so--small increment doses---works ok for me. is the only betablocker i can tolerate perhaps this may help...??? good luck , niki....! UGH!--HUH??? feel better soon--HOPE!! -maggee-
  6. dani, antibiotics===>i'm just dang allergic to them---and most meds...... fugly-ugly! lol! i got that gene mutation--that causes me to not metabolize drugs properly. had the bloodwork done...as my whole life filled w/ med reactions. so, for POTS--i am down to using propanolol--in tiny doses..and xanax. will not try anoher ssri..or anything, right now --anyways... had enough! kk--let me know what you find out--and if that stuff happs to work for you believe me--it sounds like the answer to sinus infection healing==naturally....! good luck, hun...will be prayin for ya -maggee-
  7. HI Dani & sunburnt i just came across this in another group i belong to: for sinus infections---and prevention, thereof---there is a solution called ARGYROL, that you do a sinus wash with---like with a nettie pot---i think? said, also--antibiotics--worse thing to do--for sinus infections--and the good Lord knows--we hate them anyways. haven't done my homework on this--so please google it. the source it came from seemed very knowledgable...and uses this method on regular basis--and has no more sinus infections. think it's based on silver content...and is safe.....and i do know silver is one of the most natural cleansing materials that God put on this earth. know , in early history--army troops carried their water in silver containers--as it kept it/made it PURE. ANYWAYS, DO HOPE THIS HELPS--AND I pray something helps you SOON! best regards, Pam
  8. hi endure, was going thru my email last nite---a new years cleaning...lol...and came upon this for you. it was posted on 10/5/09. interesting--as it explains diff between medical marijuana---and street marijuana.....! hope this helps--as i sure got educated. best regards, Pam ======= Hey guys, I wanted to tell you about my trip to the medical marijuana doctor because I thought it was cute/interesting and I thought some of you might be curious about it. So, to get a license you have to bring in your medical records, and I did and let them photocopy a couple of important ones from Stanford that sort of summarized my issues. The doctor at the office was seeing other patients while I was filling in my medical background and reasons for smoking medicinally. He saw them very quickly, very formally, and the appointments all went by fast. So when I handed my paperwork in, I assumed I'd be seen soon. I was fine with waiting though---there were older people and some housewives in the waiting room and it reminded me a lot of a chiropractor's waiting room with brochures on the walls about herbs and alternative medicine. About 20 minutes went by after the receptionist gave him my records, and he didn't see any other patients in the waiting room during this time, which was funny because the appointments were only like 5-10 minutes long before. Then he came out, and called my name, and shook my hand all nervously, not making any eye contact. I sat down in his office and he started talking very quickly and somewhat nervously, still not able to look at me while he was fumbling through my paperwork. He was telling me that he's never seen someone with this type of condition and that he thought I was very brave for finding doctors to help me and for finding my own methods of treatment. He thought it was really tragic that there was no immediate cure and again, commended me on my strength for working and continuing on with life despite my condition. He also started to talk about some of the treatments of Dysautonomia and some of the research being done at Mayo Clinic. I was shocked....did he look up all this info before my appointment? He must've been doing that while the 20 minutes passed. I told him that my medical records had been submitted to them a while ago for research purposes and that I really hope they continue to study all the mechanisms and causes of Dysautonomia because there is such a lack of information out there about it. He started praising me again, and telling me I'm going to be a hero someday because I'll win someone a nobel prize. Haha. He was such a sweet guy, and so nervous to talk to someone with a REAL condition. He probably gets so many borderline cases day by day where he has to question whether or not it's really a need. It's pretty easy to get a prescription though so I assume they're given out even without need, but at least he can feel good about MY case. He was SO happy to give me my prescription, and he was doing a very good job at making me feel like he was a real, professional doctor and knew a lot about the medicinal qualities of marijuana. He told me that people with POTS specifically should stay away from Sativas, which is the more "fun" strain of pot (the upper, the one that makes you laugh and have fun and feel motivated). He said that it gives normal people tachycardia and dizziness upon standing because it's a stimulant and acts on the nervous system in a way that would definitely exacerbate our symptoms. He told me I should just stick to mellow Indicas because they'll slow down the system more and give me a sedative effect that might sooth the tachycardia I normally get, and also they're supposed to stimulate the digestive system in a way that can help with constipation or slow bowel. He said I can take pot in pill form to make that work even better (and I've actually tried this, it works...but feels verrry weird in my insides lol like a numbness that flows through my tract...great for ulcers but it caused a little bit of weird burping for me). He also informed me that marijuana has a tendency to raise blood pressure which is great for my low blood pressure problem, and that a vaporizer may help better with that as opposed to burning anything. He said so much more, but it's definitely all online if you guys are curious about all the healing effects in studies. There are so many. Even just the ACT of smoking helps with anxiety because of the breathing in and out and of course the effect of the weed. I think it's most important though to point out that this doctor completely confirmed my theory that certain strains of pot are horrible for us and others are more medicinal. Cheap weed found on streets are Sativas, Indicas are more temperamental and harder to grow, so they cost more and a lot of dealers don't really bother with them. My suspicion was definitely correct. I tried smoking for years before recently, and I thought I couldn't handle pot, but as soon as I started experimenting with different kinds of medical marjiuana, my life changed. I now have a sleeping aid that works, an anti-nausea drug that doesn't give my organs permanent damage, and an anti-depressant that works right away with the only side-effect of being high, which isn't all that bad once you get used to it after many months of tolerance-training. I didn't always like Indicas though, they made me feel like I couldn't think...couldn't focus on anything. Like horrible brain fog x 1000. But after a year of smoking medicinally, it's VERY different on me. I don't get as high, but the medical effects are still there. Smoking just makes me feel "better" if I'm feeling icky, and I don't really need to get high anymore. Actually I try not to get high at all, which is easy because my tolerance is pretty strong these days. It's great =) Anyway, I hope you guys found my little adventure interesting! I haven't been to the dispensary by myself yet, hopefully they are just as informative and professional as this doctor I saw. I'm glad I did it! It's just one more step for me towards being independent (as opposed to being reliant on my ex). ---------------------------------------------------------------------- The topic can be found here: http://dinet.ipbhost.com/index.php?showtopic=13501
  9. hi Lina, i take a great product of sublingual b-12, folic acid, & b-6----called BIOTICS RESEARCH B12 -2000 my dad had restless legs years ago--and we were told to give him folic acid--which worked. also learned--don't take more than 800 mcg per day. i been on this product for years, as, helps keep homocystine level in blood down---which prevents heart attacks and strokes. anyways--place to buy is http://store.agoodvitamin.com/bireb160lo.html can't find in health food stores---just some alternative med docs handle it. anyways--works for me for the lregs---and plus--great absorbtion of b-12, b-6. hope this helps! God bless---wishing you good rest realll soon! -pam-
  10. HI AGAIN,CAT.... is it feasible to check w/pharmacy---and their records---to access what generic you were on before???? they should have the records..... i think there may be a chance---your pharmacy could order it for you--or --are you saying they told you--it isn't made anymore?? believe me--needlesstosay--i am intolerant of most meds.....so, try the MYLAN --IF you can request it..... gl, hun... let me know how you're faring -pam-
  11. hi cat:) i take propanolol regular....only comes in generic--as you apparently know. anyways, we have CVS drugstore chain here, and i get MYLAN generic from them---and have no problems. i take small increments--bout 5 mg...2-3 times per day. never tried TEVA hope this helps! best regards, Pam
  12. oopssss> always refrigerate omega 3's and vitamin E's .......and take them w/ food--not liquid. try to isolate from liquid for as long as you can, which in my case...is at best--a 1/2 hour--due to consumption of H2O all day
  13. in my experience, i have found one needs to be wary of the brand you buy....needlesstosay & unfortunately, ever so true w/supplements, as you all have experienced in the dysautonomia world of intolerance and heightened sensitivity. i was told Carlson...was the best....but found even that brand...made me have nausea. wasn't until i came off them for 2 months--and a recommended brand called INNATE CHOICE....OMEGA SUFFICIENCY , made by innate choice, inc., Victoria,BC, Canada www.innatechoice.com ---------came into my life---and it does not bother me :0) i also have read that omega 3's need to find vitamin E in the body---to be effective, and not have negative effects. has something to do w/ production of prostagladins [ i remember there are good and bad prostagladins.... ]--is all i remember. so, after much reading---years ago--it was indicated that we need tocotrienols form of vitamin E. after much trial & error --I now take SOURCE NATURALS "TOCOTRIENOLS". take one w/my omega 3's per day. they are expensive, but great price at www.vitacost.com hope this helps God's blessings to all of you! -Pam-
  14. hi! i have taken a probiotic for 10 years plus....called ' floragen 3' tis available w/ free shipping @ www.zerbos.com i also take colostrum, only from new zealand. available @ https://www.nutri-health.com/probiotics/pc/viewprd.asp?idcategory=5&idproduct=21 these 2 products have immensely helped keep my stomach-bowel--digestion in gr8 shape since getting POTS...thank the Lord good luck , hun..... hope this helps...or something does soon! best regards, Pam
  15. hi! i use to take it, but can't now---as it is contraindicated w/beta blocker inderal[propanolol ]....... not sure if same w/ all beta blockers...????? was gr8 for me--as i was always careful to bury in food....and its anti-inflammatory properties, and help w/ pain-seemed awesome to me-and agreed w/ me. sure do miss it. arghhhhhhhhhhh! of course--doc's didn't tell me to come off it--but it made me feel like my head gonna blow off when i started taking the inderal w/it. so--there it was--in the med contraindications.....>not to take NSAIDS w/ inderal. know the mix of the 2 drugs made my BP sore...and i am normally running the usual LOw---BP---TRYING TO KEEP IT FROM PLUMMETTING W/ salt....compression hose..h20.......ETC....... just thought perhaps....any of this may apply to you ??--to help.... best regards to you & all, Pam
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