Sophia3

Jan

Have you tried activated charcoal tablets for IBS? If you have cramping it can sometimes help.

Also a friend of mine who sees Dr. Robertson at Vandy got this silly tip. When her stomach starts churning, she takes a Tums and it helps calm down the entire GI tract.

I have tried this myself and sometimes it can nip things in the bud, so to speak. Othertimes I wait too long or don't have antacids in the house.

Dont know if you have tried the above but IBS can really wear a person out. No doubt YOU ALREADY know that!!

I thought Cognitive Impairment (aka Brain Fog) was part of my disability???? On top of fatigue and numerous other things.

It's frightening IF YOU HAVE it which obviously, many people here do not ,Morgan.

But I know many people are shocked it was considered off topic.???? But when it interferes with the basics of the day and i thought I could share a light hearted example, it got yanked.

I have gotten lost some days in neighborhoods whle driving where I have lived for 49 years. I have misplaced VALUABLE things around the house and found them in odd places.

I cant remember my date of birth, phone number and need a calculator for the most basic of math and use wrong words a lot or stammer during speech. I ften forget things said 15 seconds ago and flunk the same test giving to ALZ patients?!

SO, yea, I guess nobody but the sickest of us have brain fog and sadly, others do not understand.

Sorry for posting such and OFFENSIVE topic.

Jan,

I can NOT find all my articles I got many years ago. I must check the next time I am at my mom's.

A GREAT phone friend sent me about 15 articles back in 1999 or 2000. One of those was on the NET transporter deficiency deal. In the earlier days of NDRF, before they went to the current format, some lady used to post with big words and medical terminology that used to talk about that NET thing alot. I often wondered what happend to her.

If I remember correctly, I read the articles with a medical dictionary close by (ANCIENT one ) and what it didn't have I looked up online.

I also read Dr. Low's Book and one of his books I got thru the medical library from hospital nearby before it closed down! The book was HUGE and out of my league but a blast to look thru and check the index and look up things.. There is also a long out of print book by Dr. Streeten I read, but little of it applied to POTS. BUT it was fascinating to read by a guy ahead of his time with curiousity about the ANS, may his SWEET soul rest in peace! I LOVED HIS TALKS on the NDRF Conference tapes! He was a little befuddled at times but such a sweet spirit....towards the end, he was exhausted and sadly, died, not too long after that conference if i remember correctly. SUCH a dedicated soul to come OUT OF RETIREMENT to get the connection between CFS and ANS but I am digressing.

I do remember when I saw Grubb years ago, he gave out articles but maybe they were only his? My brain can't remember.

Basically the NET deal it was all anecdotcal and extrapolation. But its like spaghtetti sticking to the wall. Some sticks, some doesn't.....The SSRI would hitch it's ride to stop or suppress too much this and not enough that. I been there and tried many SSRI. But the side effects were more debilitating. Especially in the capsules you could not cut down on. (That's why I like scored pills to break down the doses)

Also, I now use the "5 year wait period" to do ANY NEW MED. To check it's safety record and after 15 years, not to be negative but I pretty much am sensitive to meds. I keep baby doses of what works and take as needed...some daily, some rarely. So, I wish I had a sure thing for you Jan, I really do.

With ALL you are going thru, I can only imagine the zig zagging your HR and OI symptoms on.

Take care of yourself. And remember to focus on your breath: BREATHE!!

We had a long over do Native American blessing on my friends house where I live. It was beautiful and the guy was great and like a therapy session for us!! Bang, zeroed in on questions we werent sure we wanted to hear but geez, it was all beautiful in a way. He had me close my eyes alot and talk about fears...he had to keep telling me to BREATHE! I keep holding my breath alot which I know. But this evening turned into pretty Powerful stuff.

Sorry this post is so long, I should've PM'd you. To tired to do over.

I hope you got my other PM earlier.

Sophia

Jan,

It has been a few years since I read the paper articles sent to me...and I am not sure what house they are currently in so I can't check them for you.

Basically, if we have problems with clearing norepi levels OUT of our system, the SSRi's have a CHANCE to fix those things in some people. We never really know when the SSRI will jump into our systems and block things so it's all a gamble.

Obviously, some folks get great responses to the meds and continue on them. Others, the gamble doesn't pay off because all our bodies are timed differently and the meds work to different degrees.

So, that is what makes this so complex.

I hope this helps Jan, more than confuses.

Yes, Nina. You are correct. Linda and her sibling have been the subject of many journals.

Not to mention years ago when the docs from Vandy, I believe, came to her house and all her siblings had to stay there to be 'studied' for several days....wanted to be watched in their daily routines. It was SOMETHING.

http://spaceresearch.nasa.gov/research_pro...cs_03-2002.html

This article may be easier for most folks to read and understand NET transporter problem in a nutshell!

Many articles on this subject.

scroll down to the last part of this article.

Hi Jan,

Hi Finette,

I was just checking back Jan from the few articles I came across, I extrapolated the same theory as Finette. That if one has an unknown cancer in the body it could duplicate things.

Isn't that the same reason women with cancer or how have had breast cancer should eat soy or take soy supplements.

This stuff is so confusing.

That reminds me, I am going to post some laugh therapy on this whole vitamin nutrition supplement deal.

yes, waking up gasping is a very possible sign of sleep apnea. So is dreams of suffocating or choking.

Please talk to your doc about a sleep study. Keep us posted as to what you find out.

Sophia

Jan

at first glance, I could only find this site.

http://www.healthy.net/scr/Column.asp?Id=657

It does mention that during cell division, things don't always go according to plan but I think the folate is supposed to keep the replication safe but who knows?

Wow, I never heard this. I am trying to find a good meatball recipe to make ahead for tomorrow's last car race.

If I find another article on your question, I shall post it ASAP.

I was interested in the Cerefolin myself but my doc said it is out of my budget and no samples. But my B12 injections aren't doing much for me these days...but now you have my wondering about those. Will have to enlighten myself later.

Thanks for a though provoking question. Nice to see your name here as always.

Sophia

Gena

That is so hysterical they are the same seeds!

Let me know if you can eat the things w/o giggling! Good luck with trying them.

Congrats! that is so exciting!

When are you going to be on Oprah for her book club! Ha , just kidding, don't even watch her show much.

I can't wait to see it.

Thanks for keeping me updated.

I wish you great success in the self publishing biz!

Sophia

Linda

Best of luck and prayers to you.

I am glad you are seeing Dr. Grubb as ONLY an ANS specialist should be making decisions about ablations!! You are in good hands.

Hydrate yourself for the trip and be well.

Do you have one of those crescent shaped blow up pillows? My sister uses those on airplanes and says they are great.

Do keep us posted.

Sophia

I typed Tilt table testing protocol into Google earlier for another site and came up with so many dfferent things, I decided not to post it. I didn't want to confuse anybody.

One place only lifted to 30 degrees, then later raised to 60 degrees.

Some used isuprepol (sp) to stimulate people's HR. Others did not.

My test did not give drugs and I was 70 degrees.

Good luck with 'the interpretation' of test to your readings and symptoms!

Sugar doesn't bother me in things that have a low glycemic index. If there is enough protein and fat to keep the glycemic index low, I am fine.

BUT give me FAT FREE ANYTHING (sugar or not!) or fat free yogurt and ice cream, and I get sick as a dog with reactive hypoglycemia. I can eat normal ice cream. I can eat cakes and brownies except I can't do Angel Food cake...PURE SUGAR! It tastes great but NOT WORTH THE PRICE.

That's the only triggers I can think of....carbs like pizza is fine as long as I do not over do.

I can't over do on mashed potatoes either!! They can have a higher glycemic index than sugar so it I eat them, I need to make them myself and add butter and rich milk. If I just eat the mashed potatoes, I get very ill.

I can eat roasted new potatoes or red ones because they are waxier, and don't jump into your blood sugar like normal Idaho.

So for me it's a total carb thing and not sugar per se.

Also sometimes chocolate and sugar makes me FEEL BETTER to get thru errand running or exercise! Go figure. But I just "listen" to my body's cravings. Works for me.

yes, I went thru same thing on tilt. The stand in for my doc was clueless and since I didn't pass out the test was 'inconclusive'? But I was sick as all get out and my HR went thru the roof.

She needs to find "enlightened doc' that knows how to interpret a test. My cardio later in the office saw it IMMEDIATELY. My endo doc saw it immediately.

And Dr. Grubb said he could tell in ONE GLANCE I OBVIOUSLY had POTS. No normal person's HR LEAPS 55 BPM from supine to standing. But he said many docs have 'different theories'.

So I hope your friend gets a better evaluation with better understanding.

With all the testing many of us had, even if done PROPERLY interpretation of any test is everything!!

Morgan, I once had a perm that some friend deemed Chia Pet Head.

My hair is fine so I used to have to get EXTRA TIGHT perms because it would drop in a couple of weeks and THEN look great. But the first two weeks...I looke like the triangle haired girl in the Dilbert comics! Now I just color my hair.

But I wonder if you sprout the Chia seeds, as noted on the site, if it looks like a Chia pet! But it sounds interesting.

I have heard of Chia Pets but not these seeds.

I wonder if you have to drink extra fluids so they don't clog things up as they draw in moisture.

Mary Jo

Do you take a beta blocker? It can worsen the Raynaud's symptoms. I don't have dx of Raynauds but my feet and hands stay cold all the time and more so in winter. I go thru spells where I get so cold my feet and hands can ache until they warm up.

I used to see adds for battery powered socks. My sister saw some recently but they used D batteries which are huge to attach to ankles?!?

Dressing in layers helps the body but nothing helps my toes. I have to work at it. I don't take bb's except tiny doses as needed.

I also wear ear muffs if it's under 40 and my nose can get bouts of being freezing cold as well..even in the house.

We are so temperature sensitive since the hypothalamus controls the homeostasis of the body and regulates the temp of our body. This is why we need AC in summer and access to heat in winter.

Good luck. I like cold weather but not bitter cold. But it helps me if the sun is out. Too much overcast affects my mood AND aches.

Julia

That is truly unbelievable there could be a NATIONAL shortage of this dye? Isn't this used to document MANY MANY types of problems?

I just wonder if the guy talking to you couldn't have been misinformed. After dealing with hospitals when my elderly mom was hospitalized this year, ANYTHING is possible. You can't believe the wrong bogus info we were given.

THAT said, I was once told during the Gulf war i could not get my gamma globulin prescrptions filled as there was a national shortage...or SO my then CFS doc told me. They were shippiing it over seas and everyplace around here was back ordered. I did call my pharmacy at the time and they claimed it was true.

So who knows. back then, anti virals were used for the flu like symptoms. It helped me at first and then lost affectiveness. Plus the stuff had the thickness of Karo syrup tho I still use the huge needles for B-12 but I digress.

I am sorry you got psyched for thiis only to have this happen. Stay in touch with the schedulers. When looking online earlier I could not find anything about a National Shortage of this dye but I don't know the proper medical lingo to put in t search engine.

Good luck and hang in there.

Proper protocol for tilt table testing is a quiet, dimly lit room, and no talking.

At mine, the techs and the 'stand in doc' yakked quietly the whole time. I meanwhile went thru a boatload of symptoms like i was on an amusement park ride. Dizziness, visual dimming, nausea and I sweat up such a storm, one of the leads fell off on my hip or legs and I had to tell them.

i had VERY difficult time talking but when I felt ill like I was going to vomit but did not, they made some notes of some symptoms. Otherwise, when I whined about feeling miserable at one point, they kindly told me to try not to talk because it affected the test.

MEANWHILE Dr. "doogie Howser" kept yapping about school days at Med school in Columbus, Ohio..went to school with the daughter of Wendy's founder or something and yammered on constantly about they had the best fast food.....he was tired because he hadn't slept much, etc!! I got so tired of hearing his chatter but it WAS in a soft tone.

but my HR jumped 55 BPM as soon as they rose me for the beginniing of the test so no wonder I felt so rotten.

Still if they talk to you, they do mess with the results...but if it makes you sicker and more symptomatic, that can be a good thing.

HOWEVER I was told since I didn't faint "my test was non conclusive" and I would have to make "lifestyle changes" to handle my tachycardia. This dimwit had no clue about my disability status.

When I saw my real doc back in the office a couple weeks later, he apologized for not making the test (though warned me he may not make it as I had to go to a special hospital he rarely worked at due to HMO) he said the test was POSITIVE and concluded what he and my doctor had suspected!! I was ecstatic the test was positive even tho the prognosis was not good.

So my TTT was stressful for many reasons. Namely the dipstick who didn't recognize a postiive ttt UNLESS the patient faints. Sadly there are MANY DOCS who think like him.

Good luck with your test!! Make sure they turn off the flourescent lights and just keep necessary room lights on. My room had canned ceiling lights on dimmer switch. I DID need a Coke afterwards so my friend could help me to the car. Used a wheelchair until I got to the parking garage. Ask for whatever help you need.

Nina

Hope you got some restful sleep ...and get some relief soon. That sounds like a drag.

Julie

Glad you got thru this test and I can ONLY imagine how hard it is to be "still" for some of those shots when one is uncomfortable or claustrophobic.

Glad you weren't offended by my previous post.

Be kind to yourself and just try to get a handle on the anxiety. Once you get more viewings, and know a bit more of what's going on, you can THEN choose a plan of remedying the situation.

Sophia

Julie

I have had the dye as well. I have to echo that I think ,aybe, you should try to get this test done to SEE EXACTLY what is one of your key complaints.

I understand the fear of side effects and reactions. But maybe your counselor can help to see why your fear is now affectng your decision making.

I do not know you or your history but.....I don't want to be harsh either but you have been miserable for so long, I would WANT to know what is wrong with me to get scans, so I could THEN decide how to address the issue. I hope you take my post in the spirit in which it was intended.

Much easier to deal with a scan and what's going on than to get another surgery, maybe?

Just my two cents.

But if you tell the testers of your fears, I think they would make sure to act QUICKLY if there were problems.

Please consider the testing...and I am sorry for all your family's care taking you have had to take on...NOT easy when whe are feeling at our worst.

Be kind to yourself and think about this...

Morgan!

Wow, I am so glad to read this positive post of your update with yoru physician. I can only imagine your angst before seeing him face to face!

Thanks for sharing.

Sophia

Excellent!! Congratulations....