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Everything posted by Sophia3

  1. I tested negative for Sjorgren's too but iffy on lupus. I've had dry eye issues for 3 yrs since getting laser surgery to try and "fix narrow angle problem" but that's a long story. After using lots of Tears Naturale Free (no preservatives, and lots of warm compresses for the clogged mebomian glands (sp) I found drinking fresh home made carrot juice to help with dry eye pain and as a bonus dim vision!! I get baby carrots to save standing time and made, first in vitamixer (or you could use strong blender IF you dilute with a cup or 2 of water) I now use a juicer. Please note 1 lb of carrots= a cup straight carrot juice. Due to natural sugar content, I ALWAYS dilute this 2.5 to 3 times. This has helped immensely. I made mistake of wearing water proof mascara on Tgiving and fell asleep without removing well. Eyes bother me ever since. I pitched that type and have not worn eyemakeup since and will not for another month. If you can handle straight carrot juice from juicer with a blood sugar reaction, more power to you. Drink right away or within 12 hrs, Put fresh juice in small mason jar and fill to TOP with no room for air. Put on lid over sink and put in fridge. I have also been told adding a granny smith apple (Tart apples, sweet apples do NOT HELP) helps you to absorb the nutrients in the carrots better. THis also helps my dry mouth a bit. However since I wore nasty mascara and bitter cold, I'm back to using compresses the last 3 days. I also need to make sure to drink a lb of carrot juice a day (Diluted, and divided into 2 or 3 doses throughout the day) Oh, if you use a blender or vitamixer, filter in cheese cloth or even better, a nut milk bag you can get online at Amaz. THis is a problem I could write a book on. I would NOT do the plugs or the pricey restasis as you are covering the problem. If the carrot juice is helping, you will know within a month or two but then you can sustain it. I make sure to drink juice daily but you may be able to skip a couple days a week in warmer or more humid weather. I can not because my night vision worses (Which affects my ability to see INSIDE the house on dark cloudy days or at night) My two cents. Ok a buck and a half! PS Juice made in a masticating juicer will last 48hrs or 72 hours MAX. but you must store in glass jar or bottle with no space between the lid and the carrot juice. I also add a chunk of ginger for spice and digestion...mileage may vary on that! Just get the carrot juice in your first. If you mix carrots with spinach you may not get the same affect. I DO NOT. I have to drink the carrot juice by itself!!
  2. Has anybody mentioned allodynia, where normal touch can feel like pain? I've got this. Tight hugs, or even soft massage hurts like heck !! and brings on fluish symptoms later...course I've also fibromyalgia but allodynia can be more common and many drs are ignorant http://chronicfatigue.about.com/od/glossary/g/allodynia.htm I have never been able to use heavy winter comforters in cold weather. Hurt my toes/feet. I dog sit for some friends and last time I was there I woke up 2 mornings at 5AM feeling like shoulders were sore. The sheets were new, and 100% cotton but heavy, scratchy and noisy! I finally yanked them off after the 3rd AM and put softer ones on and slept much better. It is a shame more doctors are not aware of this condition because they should be. I've had this junk for years so guess I am shocked when doctors don't make patients aware but we are not really surprised, are we? :-/
  3. I've had a goiter for years, as well....probably almost 10. All tests normal...just had 3rd ultrasound...always in normal range but recently I had horrible lump in throat sensation again that almost felt like mild choking...so I emailed my dr and had another ultrasound and slew of blood work as well as the TSH Free3 or whatever the other ones are....I see my Dr next week...I have not seen him in months.....odd how this can all be "normal" ...he is a 50 minutes away or I would've seen him when I felt the enlargement. It even made me hoarse this time if I talked or raised my voice (like to yell pleasantries to neighbors across the street briefly!) It creeped me out but like usual, just faded away. It would be nice if the test told us more of what was going on...I've had nodules for years, sometimes more than others. My autonomic dr is an endocrinologist so he checks things frequently.
  4. has nothing to do with bladder spasms. Simply a vagus nerve response common in MANY dysautonomia patients. with some it's tachycardia, others syncope (fainting) or pre-syncope. hope this helps. http://en.wikipedia.org/wiki/Micturition_syncope
  5. Cordelia, thanks Bella, I stated earlier I do NOT HAVE SMART phone or ipod or any of that modern junk. Thus I need a BASIC wrist HR monitor that is dependable I need something EASY to read due to bad vision and wear STRONG reading glasses! ps My HOUSE mate has an ipad but I find it most difficult to type on touchpad.
  6. I want to HR monitor but if you wear a chest with a beep, can you shut it off? I don't want to be using things at the Y & call attention to myself. I'm thinking maybe a watch monitor if those are accurate. Would like one UNDER $100 even better if around $50. I'm concerned with volume on the beeping too. anybody have any tips or links of what to buy? p.s. I want something self contained. I do not use a smart phone. My house mate has an ipad but their stuff is $270. OUTRAGE. I dont' work and he lost his job :-(
  7. Been using DDAVP for 10 yrs. Life changing. keeps me from being dehydated. Use as needed. never had water deprivation test to check ADH levels..Dr said too dangerous. So we went by clinical symptoms & I no longer lose 5lbs a day from EXCESS urination. Been fine for me. Good luck.
  8. was dx with CFS in 86 when it was called Perpetual Adult Mono by am Immunologist I saw..then they changed name to CFS as it was more than EBV..then Johns Hopkins found the ANS connection (as had the late Dr. Streeten for years but didn't know Dr. David Bell was studing CFS pts with O.I.) Anyway, sleep centers found I have alpha delta sleep disorder which means very LITTLE refreshing sleep...so vicious circle for decades. Very complicated this CFS umbrella just like ANS issues. But any documentation in tests is always a good thing though many many SERIOUS isssues are dx by exclusion of other things...sigh
  9. Sandy shell. this is the best GF Pasta (was on the diet for awhile & folks that are GF really love this brand) http://www.tinkyada.com/ Also there are good Pamela's cookies that are great though pricy and all sorts of GF mixes easily found. I made a great GF chocolate cake recipe, too. That said GF products go stale quickly so wrap & freeze accordingly. http://www.food.com/recipe/one-bowl-gluten-free-chocolate-cake-209764 (*I got gas & pains from xanthum gum, which is hard to find info on online for this. In store bought versions, no issues. Something about the kind I bought & used to heads up to sensitivity on that) For bad pain & bloating after meals that nobody can figure out, try GF diet for a couple of months. If you are Celiac or have Gut issues, you can see results right away. My neices beau did after only THREE DAYS when his siblings tested positive & he thought he had gall bladder issues..he was very skinny always. Is able to be normal weight now! For pain, neurological or other things, GF diet takes longer. But bloating gets in the way of sex for many reasons. So now, to bring the topic back to sex..sorry for the temporary digression but nobody should have to give up fave foods GF.p.s. Do yourself a favor though & wait a few weeks before trying GF desserts to give yourself space from reg flour deal! p.s.s. If your doctor can not determine what your pain is during sex, look for another doctor. I even sent out letters to many local docs to find my ANS Dr 15 yrs ago. It's ok to Fire your Drs! Just don't burn bridges. If we get emotional, they tend to say painful sex or sexual areas are mental !@#$%? but I digressed, again. sorry *Focus, Soph. Focus*
  10. I'm CONFUSED. IT says Midodrine in the title but the post/link do not mention it. Please ENLIGHTEN me. And is this drug OFF the market again. I don't currently use it but LOVED.IT!
  11. Yes it was MYLAN that was horrible. I needed half a pill & it crumbled in the scored area so much, Kroger ALLOWED me to return it & just pay diff for name brand. Anyway, we guess Shire changed their mind & quit making w/o alerting the media Glad I never counted on it to function but many do . . .
  12. Sorry you can no longer get Proamatine. I've not come here much in last several months but am confused. I thought many posted here that Shire was STILL making this drug due to our calls/emails & such. Is this NOT TRUE?? No more proamatine. Can somebody update people? I was thinking of asking for a script but not if there IS not medicine. Generics were CRAP..especially the one made by that drug company in Morgantown W Va . forget the name
  13. I have not sweated in hot climate for years! I may a little bit under arms or with cold feet when not appropriate (like when cold/nervous) Now I am in full blown menopause (no estrogen and FSH at 132. I've experienced hot flashes in last 3 months. (Exercise is NOT HELPING them AT ALL by the way and I've even way stepped up my routine but I digress) While not drenched, I do get to perspiring on abdomen, head, under arms and one night had to change night shirts. Anybody else experienced this? MY ANS doc just thought it was interesting but nothing with my body suprises him. Good news is when it hits at night this cold weather/cold house doesn't bother me. My room gets down to 60 at night. We keep house cold due to utility bill & DRESS in many layers, turtlenecks and stuff. Anyway, I am kicking a## & taking names at the Y and hope to improve things with exercise. Will update in a couple of months. Vanderbilt used to claim women got 'better' after menopause, others disagreed. in 2001, Dr. Grubb just said to 'expect big changes after menopause..probably for the worse'. Well, exercise tolerance is improving though I do need low dose gabapentin to help with post exercise pain/flu like symptoms but is ok trade in order to HAVE BETTER EXERCISE TOLERANCE! Also somedays all I can do is drive down the street to the Y and exercise but it's been my MAIN PRIORITY!!!! so it's been working for me. But back to sweating, anybody else notice changes in menopause. Thanks
  14. Is there a way to READ THIS without it being in a tiny box? Print is wayyyyyyyyy to small for my eyes and enlarging it makes for seasick scrolling? I do not need to download anything until I can read it. Please advise the trick to reading it and having it look like a normal article instead of in a tiny box. Thanks
  15. Stacy Yes I know. I've the hyperadregernic pots and my BP can Spike BRIEFLY Initially whenstanding and I have to lie down to take it again. I also have LOW BP after resting, sleeping, trying to exercise. Was simply stating checking your BP ONCE immediately after standing is not enough. Yes it can wax and wane. AGAIN I go back to Dr. Streeten, the father of Dysautonomia as many called him, who studied this stuff for many years. He came out of retirement to work again when he found Dr. Bell was getting many odd BPs in his CFS (Chronice fatigue pts) But we could go on forever on the rare/normal specificities of dysregulation of BP/HR. Thus why one needs to STAND for long periods of time OR to have a "Proper tilt table test" which is "Properly interpreted". Two different docs from same group interpreted mine WILDLY because I did not faint but one was a d&^*%&@ who knew nothiing of the Vanderbilt definiton of POTS which was my original answer to whomever I was answering. Also folks you do not need to quote everybody when answering aquestion. It's tiring and I don't come here much due to eye issues that make words a challenge. If you hit ADD REPLY you can just add to the topic. if you hit REPLY only it quotes entire posts or parts of them. StillGettingARoundNewDinetSophiawithSoreEyes Peace :-D
  16. I find doctors who OVER simplify things to be disturbing to those of us with true gravity inducing problems. I've gotten emails that Dr. Yan is not that helpful. From DINET's own website link is this which explains her approach. Might be worth a read and asking around to folks in CALIF who've seen her? Not trying to start anything here but if traveling is difficult/impossible due to nausea/expense, might want to take a gander. http://www.dinet.org/physicians.htm#United%20States
  17. That kind of bp taking is NOT enough. That's more for orthostatic HYPOTENSION. POTS is just heart rate escalation..with small or no variables in BP. Others, as mentioned have DELAYED BP drop after being on feet a long time. Tell that Dr. to read the work of the late, great Dr. Streeten. Father of Dysautonomia. He is on the NDRF conference tape from 10 years ago. He mentioned having a patient stand all day LONG in his office with a nurse present. Dr. Streeten said Patients don't tilt they stand!! But need to be monitored for long periods of time.
  18. Thanks for the answers so far. My family & friends can't possibly imagine my having to do jury..they should follow me in my house on a camera to see my limits. HATE getting this kind of mail on weekend.
  19. I will have to watch the repeat as our DVR rebooted at the beginning of the show and takes 15 minutes to reset. (Taping the IRL race while house mates gone so we missed several laps but I digress) I did see the last segment of the CNN show and must say this. If a woman has cancer and wants to have surgery to remove body parts & organs, fine. It's YOUR Adult decision. But the fact she BURDENED her little girl with the fear SHE might 'have this gene' horrified me! WHY would you dump that info on a little girl? I called my sister ( who chooses not to OWN a tv anymore cause of the junk on it ) and asked her if she found that offensive and she said yes. She raised four wonderful successful kids with challenges along the way. NEVER would she tell a little kid "You have this gene & may get THIS ILLNESS & possibly die." So I hope the earlier part of the show was not like that...i caught a bit on another tv about the stroke person & recovery...but RUINING a kids childhood by creating such fear with such medical info offended me. TESTS are not always %100 accurate. Ok. off soapbox :-D
  20. I've been VERY FORTUNATE that my ANS doc, an endocrinologist, has been very open and NOT threatened by ANYTHING search I've done over the eyars. Maybe it's cause I've been at this so long...and I know how to get good info & not "jump on some bandwagon" ..plus I hate getting on NEW drugs but I've suggested older, substitutes...plus I do great homework if I do say so myself. I've dealt with some surgeons that 'sigh or comment internet full of bad stories...well duh like many surgeries not needed or scared into patients..like you will go blind if we don't. . . My only fear on the CNN show is, isn't PubMed a pay site? or lead to many pay links for articles? OFTEN I've come across a 10 sentence abstract but you must pay a huge one time or annual fee to read article...Unless I am thinking of another site. Thanks for the heads up on this show. I will watch it Got it on the DVR as I type
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