Dizzysillyak

Hi,

Sorry to hear you had such a lousy appt. I just had one of those myself.

I gotta ask.. Are you joking about someone putting a tuning fork on your forehead and concluding you had anxiety ? I just can't picture this without

cracking up. What kind of doctor was that ?

I had a chiro use a similiar object attached to a machine on me once. He insisted it could tell him

what foods I was intolerant of. It was going well until he didn't agree with the machine and he said it

was broken. I should've left right then but I was too sick.

Tc .. D

Hi again,

I was responding to your comment that you were tested for celiac disease so gluten isn't a problem.

Sadly, this is the old way of thinking about gluten damage. I've only been in the web since 2005 ,but I've

found numerous studies showing that gluten damages more than the gut. Theglutenfile is just

a handy collection of these.

I totally respect that you're following your doctors and nutritionists orders but wanted to say that's

what held me back for 15 1/2 years. I've found newer info on the web that most people in the

healthcare field aren't up on. Like dr terry wahls diet or the paleo diet.

We are different in many ways but alike in more. We all need basically the same nutrients to survive on this planet.

This is what the paleo diet is all about.

Fwiw, I'm not trying to be a pest. It's just that your list of symptoms sounds just like me in 2005.

tc .. D

Celiac disease is just one form of gluten sensitivity. "Theglutenfile" covers this. What you were eating would've made me sick too. Try organic meats, fruits and veggies. And bottled spring water.

It took me 6 - 12 months to stop most of my digestive issues.

What are you eating ? Imho, these sound like normal reactions to eating foods we're intolerant of.

Gluten, casein, caffeine, hfcs, soy, corn, etc are common food intolerances. Candida is another

possibility. In which case, taking probiotics might help. But killing off excess candida may he required. I'd try s boulardi too.

You may want to keep a food diary. Tc .. D

Fabreze nails me too. I avoid as many of those types of chemicals as possible.

fwiw, imho, the link between autism and gluten and casein has been well documented by the autism

research institute on the web. I've

met countless parents who've told me this at health food stores and on the web too. The link appears to be leaky

gut which makes some intolerant of gluten dairy, etc. I also have leaky gut.

From what I've seen for the last 7 years, traditional medicine disputes that leaky gut exists but provides no help either. And the last time I checked they indicated an unwillingness to even study this.

I had several autistic symptoms while eating the sad. I still struggle with the inability to maintain eye contact if I'm tired.

Hi katy,

I'm jealous of your 87 year old Grandma. ; ) .. Fwiw, I understand that she's positive for gluten and dairy intolerance but her symptoms aren't what I've seen related to gluten

or dairy. I was thinking they could be from getting in the pool everyday. Staying in a wet suit is known

for causing yeast infections. She may also want to switch to all natural personal hygeine products.

Whole foods has these but publix has a chemical free toilet paper.

And if she wasn't told this already, she may want to take probiotics.

Dairy free supplements are available but so is dairy free yogurt. I love Amande coconut yogurt but the extra

ingredients didn't agree with me. A strong probiotic may be necessary tho.

I'm not exactly sure where the Villages are but she has 2 whole foods to chose from in orlando. They

have lists of their gf foods but I'm not sure if the list will also tell her which ones are dairy free. Publix

has a list too.

She shouldn't have a problem eating out still. Carrabas, chilis, uno's, outback and even olive garden have gfcf foods.

Also, sorry to be so wordy here, but it's been my experience that nutritionists really aren't helpful when it comes

to these kinds of diets. Most of the people I know wish they hadn't wasted their time or money.

Tc .. D

Have you tried getting excitoxins out of your diet and environment ? Gluten, hfcs and caffeine I know

were making me this way. Tc .. D

For those bothered by the heat, have you tried treating for candida ? I "think" this may be what's

behind that. It could've been some othrr food intolerance or chemical causing chronic

inflamation too tho. I feel great in the sun since changing my diet. I have to stay hydrated tho.

Tc .. D

I have the normal reaction to these now but I seem to remember it wasn't always that way. But my bp and hr are within the low normal range they just fluctuate when I'm upright. Maybe getting the excitotoxins out of my diet helped with this too. I'm much calmer now.

Fwiw, I have a freind who needs a lot of novacaine but doesn't have pots. Imho, Asking a question like this will typically only get responses from those who agree. I wonder what dentists have to say about this.

Tc .. D

Wow. 87 and being told to change her diet. Sorry but it never dawned on me that when you said grandma, you

might be talking about a much older person and that she has a good social life. I could be a grandma.

Lol ..

I've met quite a few celiacs who didn't find out that they were gluten intolerant until they were older.

Some are just fine healthwise with the gf foods but others aren't. I'm not sure why tho.

The forum www.glutenfreeandbeyond.org has some great info esp in the gluten free 101 section.

They have a recipe section too.

Tc .. D

Hi issie,

I was on the gfcfsf junk food diet from 2005 - 2007,8 because I didn't realize I was eating junk food.

I learned everything I could about cooking this way and was even shopping for bread machines. I know all

the terminology .. Lol .. l can see how people can get sucked into this tho. Gf foods are showing

up everywhere and this allows us to feel "normal".

All I was trying to do at the time was eliminate gluten, dairy, soy, etc and it never dawned on me

that because I'm chronicslly ill I need more nutrients not just calories.

I started on the paleo diet but got carried away with eating too much meat and not enough veggies.

Now I've settled on the wahls diet because she includes other dietary features like sea veggies,

fermented foods, etc.

But, I recently read that she's not anti grain and I've found that I can't

process it. It does a number to my blood glucose. Same goes for legumes and too much fruit.

I wish fruit didn't taste so good so I could stop nailing myself .. Duh ..

Tc .. D

You may want to back off the klonopin. My oi/pots gets worse if I take it for too many nights in a row. Tc..d

Eta. I only take 1/4 of a .125 mg sublingual for sleep when needed. Fireworks or loud noises keep me

awake so I mostly take this during loud holidays.

I was able to come off this after 16 years by

changing my diet to remove excitotoxins like gluten, dairy, hfcs and caffeine.

Azo with probiotics takes care of this for me. I have a history of kidney stones so it could be

that oxalates are constantly irritating my bladder. I didn't get my first stuck stone until 2008 but

that doesn't mean I wasn't passing smaller ones all along. Tc .. D

These processed foods are void of nutrients so I'm surprised so many doctors are still

recommending these. From what I'm seeing lately the trend is to recommend a diet rich in nutrients like the

Paleo or Wahls diet.

lt might be easier on her to transition to this diet via the gfcf junk food diet because of withdrawals tho.

Tc .. D

I would suspect that you have a candida problem or you're intolerant to what you ate. Treatments for candida are on the web. I used candidase

virastop, garlic, pau d arco, tartaric acid and candida diet. Fwiw tho, I just learned about s boulardi

and it might help too. I just use the jarrow brand.

I used to have gastroparesis all the time but eating the wahls diet, less meat (1/4 lb per day spread

out thru the day) and taking digestive enzymes keep it under control.

Imho, automatically thinking gastroparesis is normal for dysautonomia is counter productive.

Diet, esp gluten free, and digestive enzymes should be considered.

Tc .. D

Hugs .. I watched part of the video and had to turn it off. Fwiw, I'm not sure what was going on but

the nurse who administered my meyer's cocktail iv's would've stopped the iv and consulted my

doctor. But I was getting those in her office.

If it were me I'd contact the doctor who prescribed this for you.

Sorry I'm not more helpful. Tc .. D

Hi,

Welcome to the board. Sorry to hear you're going thru this.

I don't know what they do if your ttt is normal. But, if you haven't already

it might help if you start tracking your bp and hr while standing, sitting and laying down.

You can do your own poor man's tilt table test too.

Watching your glucose can help you understand what's happening too. Hypoglycemia can be related

to dysautonomia.

These tools won't cure you but they certainly helped me understand what was happening. My hr and bp are within normal range all the time but I fail the ttt everytime.

Tc .. D

When it comes to pots, sometimes I tell them my heart races when I'm upright so I get tired easily. Or

I'll say I have a blood circulation problem. Both explain why I look ok but can't function for long upright.

Have fun.

Hi jangle,

Please don't take this the wrong way, but how do you know it's not anxiety or a phobia ? I've done many things over the years but they still make me anxious.

I can't see a needle without my flight or fight response kicking in. For me, it's a very real phobia. That

goes for cockroaches .. Aaaaagh .. Lol

I'm not saying you have a phobia but there's nothing wrong with having a phobia either.

I've worked on reducing my reaction to my phobias a few times. I even gave myself b12 injections

after a great deal of coaxing. But if I'm tired, I'll still have a strong reaction, esp to a cockroach. I can get totally hysterical with flapping arms, screams, the works if I'm surprised by a roach.

I can't physically react to needles by running off screaming and can only verbalize my fear since I only

see these when having blood drawn

or I'm given a shot. But wouldn't it be funny if I did .. Hahaha

Fwiw, I've never noticed a change in my oi from an adrenaline rush that was from a good or bad

experience. Certainly I feel a bit more

energized but it was short lived and my pots was still there.

Sorry if I got off topic .. I'm just trying to understand why your bronchospasms are triggered by specific events.

Just thinking out loud here. Tc .. D

Hi jangle,

That's interesting that you get brocospasms when speaking publicly or to really hot girls. Is it possible

to de sensitize yourself to this by doing it more often ? Starting with short sessions. Followed by

positive re-inforcement of your chosing. Or take a public speaking class.

I took a class in public speaking and it helped me get over my brain freeze / anxiety. I'm sure I'd get a little nervous now but

it's been 22 years since I had to give speeches.

Fwiw, you may find that hot girls are easier to talk to when there's only one of them. Just don't

focus on her looks.

Tc .. D

Ps. My brochospasms are from hypoperfusion and go away after laying down for an hour.

Great info jangle.

So do we know what causes Raynauds ? Does Raynauds always include

blood flow changes that you can see ? My hands hurt so bad when I try to hold anything

cold but don't change color. But, my feet used to hurt just as much if I walked on cold tile barefoot too but

that's gone now. I'm guessing nerve damage ... Tc .. D

A POTS sit in / supine in for us. Sounds like a great idea. And we don't leave until they answer our questions.

Sorry to hear you didn't get answers even after testing positive for Nutcracker syndrome. I'd have thought

that would've opened some doors for you.

I don't understand why doctors are hesitant about doing

the surgery since they perform other surgeries with similiar risks. Is Nutcracker syndrome

taken seriously ?

not to be a downer, but since you're in there for a reaction to your tattoo, is this a good sign ?

Btw, hope u feel better soon.

Hi lemons,

Interesting discussion. Thanks ..

I understand what you're saying but I'm not sure I understand ptsd. I'm not one to buy into psych

diagnosises tho. Imho, their info is heavily skewed by poor research. Actually, just saying we had psych

problems instead of real physical problems is a great example of bad info.

Fwiw, I can relate memories of stress related symptoms to at least a hundred

different experiences in my life. For example .. I have total recall of natural childbirth with my dd 24 years ago down to the

breathing I did to slow down her birth, her smell, her first nursing and the way her face looked. This doesn't

mean I was traumatized tho. It just became an emotionally significant event that I will never forget. Getting stuck

in traffic in my first brand new non automatic car on a rainy night haunts me too. These feelings

are real .. And I experience them again just writing this.

Traumatic experiences include being rear ended at appr 40 mph.

I'm a wreck if cars start slamming on their brakes in front of me still tho. But that's just me remembering

how bad it was. Still no ptsd tho.

Personally I feel anxious driving, in crowds, etc because my brain isn't working well from hypoperfusion

and I'm confused and embarrassed. Sure I could take something for this but they make me too

loopy to function. I'm glad you found one that works for you tho.

Unfortunaty, No drug can stop my blood from leaving the upper part of my body which causes my heart to pound harder, brain stops working,

kidneys suffer, lungs begin to shut down, etc.

Tc .. D

I'm assuming you want to know this med would treat "pots". If you look at dr hain's info on this site,

he gives a list of possible causes for pots. If we use this as a guide, then there can be multiple possible

treatments. Imho, Pots is a wastebasket diagnosis like cfs or ibs.

I'm a wee bit over my head here but my definition of cfs, the old cfids,

means pwcs have an upregulated immune system. I tested positive on what was called the cfs panel in

the early 90's and again in 2006. This showed I had an abundance of antibodies to several viruses.

Maybe if they had stuck with this test as a diagnostic tool for cfs, there would be a lot less confusion.

Tc .. D