Dizzysillyak

Lieze,

Sorry to hear that you're going through this. I know what you mean about playing Russian Roulette with foods. From hanging out here, there are lot of us that have serious and/or quite a few allergies. My allergy testing showed that I was allergic to most things on this planet ... lol ... I know that not everyone with allergies, even anaphylaxis, has dysautonomia but I wonder what the connection is ...

I just started doing this last year and it's scarey ... So far I haven't called 911 though. I watched my daughter do this for years and like you, we figured out that most of the time Benadryl will take care of it. From what I can tell, I'm reacting to yeast, possibly S. Boulardi ...

BTW. I know it's hard but it's best not to freak out when these happen. It only makes breathing more difficult. Now that you've seen that Benadryl works hopefully you can relax next time. You need to be very CAREFUL though ... if the Benadryl doesn't work call 911 ... Ambulances have the apparatus on board to deal with this.

Did you use the dye free children's liquid Benadryl ? That works for me. I hold 1/4 tsp in my mouth as it seems to work best this way. Too much Benadryl and I can't think at all the next day ...

Unfortunately, allergy testing may not show what you reacted too. My DD tested positive to a peanut allergy once and then negative. We KNOW she's severely allergic to peanuts. It's hard to say whether it was the potato you ate or not. Was it organic ?

I haven't bought an Epi pen yet but from watching my DD go through this, most of them expired before they were ever needed ... hope you feel better soon ... Dizzy

Hi ...

I'm not sure if anyone else has told you this yet but IMHO, gluten should be your first suspect here. In fact, if your nuerologist doesn't know this by now, you may want to change nueros. Other foods such as casein, corn and soy are problematic for a lot of people too.

I'd also look at other possible toxins though. Do you have toxic mold ? Are you being exposed to low grade toxins regularly ? What are you eating ? What drugs or supplements are you taking ?

Foods seem to be a big contributor to toxic effects so getting these out of your diet could help you within a few hours or days. Things like aspartame, High fructose corn syrup, dyes, hormones in meats, etc ...

IMHO, A diet of organic fresh meats (no deli meats), fruits and veggies would be the quickest way to see if it's something you're eating ... Within 24 huors of cleaning up my diet, I didn't feel jittery all the time. Just look at my signature to see what else has improved ...

Drugs and supplements can contain toxins too. In fact, I'm still finding that I can't tolerate most supplements because they cause me to feel so revved up that I can't sleep at night ..

hth ... Marcia

Well I had my follow up on my ER visit and have a new diagnosis of hypoglycemia I guess.

She doesn't think my symptoms sound like POTS and wants to send me to a G I specialist.

She's thinking Celiac which I tested negative for at CC but she thinks the fact that I am having trouble with meat now maybe a sign that it has progressed enough that it may show up at this point.

I am just a nervous wreck and scared and so afraid of tests.

Hi Lieze,

Your doctor is absolutely correct about the possibility that celiac disease / gluten intolerance is behind your problems. And I'm excited to see that more doctors are finally looking at this. If they'd only looked at this 21 years ago, I wouldn't have wasted all these years being too sick to function ... My daughter is 23 now and I missed all of her childhood because of this ...

Many celiacs don't test positive the first time around so testing negative shouldn't discourage you from getting the gluten out of your diet. I REALLY don't think that I would have tested positive for celiac disease backn in 1990 when all of this started because I could still eat gluten without getting the runs from it. TMI ... lol .. I think I just had gluten intolerance and it was affecting my brain, etc ... go to www.glutenfreeandbeyond.org so you can see what gluten intolerance can do to you ...

It's only been in the last year that more and more doctors have learned about this. FINALLY !! There have been studies on the web for at least 8 years ...

Also, some people seem to think that celiac disease is EASY to treat.... WRONG WRONG WRONG WRONG !!!

Sure some celiacs simply have to get the gluten out of their diets to feel better but I can tell you from experience that many of these people, including me, still aren't healthy most of the time. Gluten affects the brain, etc ... I'm not sure who keeps spreading that rumor but it's not the patients I know. My doctors thought this way so maybe it's the medical profession ... of course when I went back asking why I didn't heal up majically, I got the standard " I don't know ..." .

Not to mention that celiac disease causes nutritional deficiencies which most doctors don't look for ... I found out a year after going GF that I was significantly deficient in B12 and Iron. And 3 years later found out that I was deficient in E and chromium. My integrative doctor is looking at all the complications that celiac / gluten intolerance has caused me ...

IMHO, by the time gluten has damaged your gut to the extent that you have flattened villi and thereby get the gold standard diagnosis, it's done irreversible damage to other organs too.

Ok, I'm getting off my soapbox ... ... hope you feel better soon ...

Oh, I had a GTT with insulin and found out that I OVERPRODUCE insulin ... which leads to chronic hypoglycemia. So be sure to have this test. Otherwise, your doc can't see what your insulin levels are ...

And ... still trying to get off my soapbox ... ... I've found that eating the Paleo / low carb diet helps me control my blood glucose levels ... It took me about a year though ...

tc ... Marcia

you have my sympathy ... I had this all the time before eliminating the foods from my diet that I was intolerant of. I'm on the Paleo diet now and I only get it if I've eaten too much red meat or too much food at one time. (Some Paleo I'd make ... lol )...

I take digestive enzymes that help now too .. if you're interested, IMHO, Enzymedica is a good brand.

Are you eating healthy fats like raw seeds and nuts ? I don't do well with cooked nuts, seeds or fats but I'm fine with raw ...

A pacemaker will only help you if you have problems with your heart rate dropping low. It will do nothing for the rest of the autonomic dysfunction that causes POTS symptoms. While the incision that is made to put the pacemaker in is pretty small, the risks of putting in a pacemaker are significant. So the cardiologist will only put one in if you meet specific criteria. The only way to know is to ask your cardiologist and if you still have concerns, get a second opinion.

Thanks ... for some reason, I thought a pace maker would correct my left bundle branch block.

I see an integrative doc too. She's ordering tests that are actually helping me. Including which foods I'm intolerant of and nutritional and hormone deficiencies.

Thanks Jana,

That's great that it's helped you ... I was wondering how it helped you. Do you still have POTS ?

I had to google bradycardia ... lol ... I don't think I have this since I've been watching my heart rate sporacticly over the last few years and never saw it go that low.

I get winded a lot but I've noticed that this symptom seems to come and go and I'm not sure why. Yesterday I vaccuumed for at least an hour and felt fine. Other days, I can't even stand up for any length of time without getting winded ... Stairs are a problem 98% of the time ...

My cardiologist mentioned that since I'm a celiac, nutritional deficiencies may be affecting my heart so I need to re-check my labs. I thought that they were looking good now but maybe I'm not absorbing them ...

tc ... Marcia

Thanks Lieze,

Hope you're feeling better ...

I'm hesitant to go back to my cardiologist until I have a better understanding of what's going on. And I'm having trouble finding info on this ... If I hadn't met that man who was told by one cardiologist that he didn't need it and then a different cardiologist put one in for him, I wouldn't be questioning this ...

tc ... Marcia

I love the big brain comment about your doctor.

I see a doc who's well respected and in fact, impresses me continuoulsy with her quick and accurate evaluations of what's going on in me. She's an integrative doc who was a practicing MD before learning about holistic medicine. We're still working on the OI but I told her that I wanted to try exercising first ...

I find this interesting because I too have kidney problems just not the same one's that you do. It makes me wonder just what the urinary tract has to do with dysautonomia. Of course, our UTs are a part of this system but I'm not sure how it relates. Good to see that you have some good sources of info on all of this.

I have a history of kidney stones and I'll also get UTI symptoms from taking B supplements, especially B2. And I used to urinate frequently and leak all the time but since I started taking AZO with probiotics this is under control ... kow ...

I never tested positive for UTIs but since this treatment is working, I suspect that I had them anyways ... and it could be the probiotic in the AZO too. For some reason, my urinary tract isn't healthy.

Have you heard that people with kidney stones are missing a probiotic called o.forminges ?

Not that you have kidney stones but I think this speaks volumes about how probiotics can affect our urinary tracts. All of us women already know about how probiotics affect our female parts ... lol ... Not that it's funny but I also have vulvodynia (vaginal pain) which has responded favorably to the low oxalate diet.

O.forminges can't be replicated and sold at this point so the only way we're getting this is through some process that's occuring within our bodies.

Are you taking probiotics ? Also, I noticed that you're taking Klonopin and Theanine does the same thing but it's all natural. I use it for my noctural myoclonous ...

tc ... Marcia

I know what you're talking about here ... I could tell that I was making myself feel worse by NOT laying down when my body told me too. It seems NORMAL to me though that if you're body is telling you to lay down now or ELSE ... it would make a person anxious.

I just try to lay down when I first start feeling weak or light headed. Fighting it has never helped .. In fact, I'll get petite mals if I continue standing ... and then it will take me even longer to recover ...

tc ... Marcia

Hi Lieze,

I went through what you're describing for 15 years so I can relate all too well ..

Before I eliminated all the foods and chemicals that at I'm intolerant of back in 2005, I would go through episodes for 1 - 3 weeks at a time where all I could eat was Boost or Ensure and a ton of bread. It's funny because gluten filled bread used to calm my digestive tract and now it gives me the runs ...

And like, you, I HAD to have some kind of real food to soothe my stomach. Bread was the easiest food for me to digest. I would buy a variety of bland rolls knowing that was all I was going to be eating for the next few days.

I suggested GF bread for you since I know how gluten is causing so many problems for so many people and thought this may help you even more. There are some GF breads out there with nutrients but you'll have to look. I stopped eating all grains because I just feel better without them. They were making my body feel weak ...

Whole Foods makes their own bread. I used to eat the multi seed one .. yum ... From what I'm hearing, UDIs and KinnickKinnick are good ...

Oh and use some peanut butter or Sunbutter on it ... a touch of jelly would be great too ...

ok, now I'm craving bread ... lol ...

hope you feel better soon ... And don't worry about stressing out your family. If they're there for you it means that they care and want to help you ... HTH ... Marcia

Great to hear that you've found something that's working for you ...

I'm treating my CFS/ME/FM with orthostatic intolerance (OI) with the Paleo / low carb / low oxalate diet and supplements.

Most of my symptoms are gone and I'm working on the OI now. Oh and I still have PEM (post exertional malaise) but I think it's due to my OI.

Hi Lieze,

Sorry to hear you're having such a rough time. I became totally disabled with CFS/ME/FM when my daughter was 2 so I know what you're going through. HUGS !!!

You may want to take a look at your diet to see what's causing you symptoms. I've found that several foods, especially gluten, were causing most of my problems. I mainly stick to organic meats, fruits and veggies now and am feeling sooo much better ... human even .. lol ...

For now, IMHO, I'd try drinking 3 Boosts a day and eating gluten free bread. That should get your weight up ... You can probably eat plain meats, fruits and veggies too.

I googled it and verified that boost was gluten free ...

http://www.boostdrinks.com/faqs/

hth ... Marcia

Hi Firewatcher,

sorry to hear this. I don't know anything about kidney diseases but based on what I've been learning over the last 5 years, I'd look at holistic treatments too.

I wonder what role this may be playing in your dysautonomia ...

tc ...

It's really uncanny how many of us with dysautonomia have the same group of symptoms ...

My fibro pain is mostly gone now unless I eat bacon or tomatoes. I'm mostly pain free now except for when someone presses on one of those trigger points. Not sure why though ... well, except that I've been in several accidents and have a few damaged disks. Pinched disks can cause trigger points ...

Are you sleeping ? I take 5HTP from time to time if I have insomnia and it works everytime. If I'm not getting enough deep sleep, my pain returns too ... but between the 5HTP and Virastop, I've been sleeping great for a few years now ... kow ..

hth ...

.. I'm sure that I'm no help ... I'm highly allergic to most things on the planet and so far I haven't been able to tolerate any non drowsy allergy meds.

I've found that I can take 1/4 tsp of children's liquid dye free Benadryl if I really need something ... Even that makes me feel weird though.

Hi ...

I've been diagnosed with a left bundle branch block via several tests by my cardiologist for several years now and am wondering if I need to pursue getting a pace maker. My cardiologist didn't recommend it when I saw him a couple of years ago.

But, I'm still getting winded extremely easily despite strength exercising for the last 3 months and I have a positive tilt table test. I've been using salt to keep my bp up because without salt, it gets way too low. I also get petite mals / staring episodes all the time if I overdo it or I don't lay down for an hour every few hours.

How do we know if we need one ? The reason I'm asking is that I met someone recently who has one and feels much better now. His regular cardiologist told them it wasn't necessary so he went somewhere else and it's made a world of difference for him.

Thanks .. Marcia

Hi Future,

That's great that you've been exercising for years. I'm sure it's helped you from getting deconditioned.

I was wondering if you could give me the link to Dr. Levine's exercise program. Will his info on enlarging the heart be in it ? Why is he doing that ?

I've been exercising for my OI since October. I have CFS/FM also and haven't had any relapses so far. KOW ... I started PT a few weeks ago to get some directions. Something I was doing was making my back and shoulder pain worse.

Before starting PT, I was doing leg lifts and arm extentions while using 2 - 3.5 lb weights. And some sit ups and push ups.

I have to do most of my exercises while laying down because that's when I feel my best. I haven't been watching my heart rate with a monitor but I only push myself until I can feel it start beating hard. It takes me 2 hours to complete my exercises because I have to take so many breaks.

I've been totally "healthy at rest" since October 2007 but haven't progressed past that in all these years. Meaning as long as I'm laying down and rested, I feel GREAT. But as soon as I get up, my BP drops and it's just a matter of time before I HAVE to lay down for at least an hour. I have a left bundle branch block and I'm not sure what role it's playing here either.

FWIW. The only exercise I've found so far that really helps me feel less fuzzy headed is the one where you lay on your back and lift your legs slightly off the floor. I think it helps because it gives my spine a stretch that I don't get any other way. I couldn't do this at all prior to getting my ataxia under control.

Good luck with the bike. I can't imagine doing a recumbent bike right now. I tried riding a regular bike in PT the other day and only lasted 2 minutes. Then, I was down for 20 ...

I'm not sure if this is going to help me all that much either but like you, I want to give it a try. I've been sick and mostly couch bound for 21 years now so my body is definitely deconditioned ... Besides, this is a great way to clean out lymph nodes.

tc ... Marcia

I guess what I am thinking of, which is complicated, is what our RBCs/HCT are like in relation to our blood volume. Most of us wake up in the morning feeling dehydrated and begin our daily routine of ingesting massive loads of salt and water/liquids. In the morning, our RBCs and HCT may seem fine on a blood draw, and all seems fine hematologically as far as ratio of things to volume. As the day goes on, we accomplish our purpose of building up our intravascular fluid, and by the end of the day, our RBCs/HCT might be diluted, which would probably be our normal status if we WERE normal and not having low blood volume.

We are complicated to begin with. I'm just trying to see if our bodies are giving us all these reactions because of our iron status. ALL of the POTS symptoms are the same as anemia. If you go to an anemia forum, everyone's complaints mimic POTS. It's actually uncanny!

Hi Sue

I don't wake up dehydrated if I drink plenty of salt water thoughout the day the day prior. I stopped going to the bathroom all the time a few months ago. I "think" taking AZO helped but of course I had to give up the supplements (B2) that were causing it too.

As far as severe anemia mimicking POTS ...

When I was severely anemic from excessive menses to the point of needing a tranfusion if I started bleeding again, I felt extremely weak all the time but especially while going upstairs. I live in a condo and I had to sit down every few steps and rest for a minute or two .. I still get winded everytime I go upstairs, but NOTHING like that. It's a intense weakness that I can only relate to being iron anemic ... possibly B12 too though since both were discovered and treated at the same time.

Speaking of B12, I'm taking adenosyl B12, MB 12 and they appear to be helping my muscle weakness. I've been fine energywise and strengthwise for over a month except that my brain isn't keeping up yet. lol ... I'm still experimenting with these to see how much I need. So far, 1000 mg of MB12 and 3000 Mg of Adb12 are making me feel a little too energized ...

I don't think that using the cast iron pan could cause your hair to change colour. Hair is dead tissue (keratin) so any change from diet etc would only show in new hair growth at the roots. Hair colour is due to melanin (the same pigment that causes skin colour), again changes in colour would occur slowly over time.

Flop

Sounds funny, I know ... I never looked into it but I figured it was a heavy metal reaction. All I know is that my hair changes color pretty easily within days. I have areas near my face that turn from a light grey to white to blondish regularly. Sun light will make it change but so will shampoos. And if I eat from the cast iron pan too often, it turns a darker ugly sort of grey color ...

I was iron and B12 anemic in 2006 when I was tested and that was one year after going GFCF, etc free. Eating rare beef and buffalo cooked in a cast iron pan fixed my numbers within 6 months, but I still feel the need to eat like this at least once or twice a week. If I use a cast iron pan too often though, I get a funky / greyish color to my blondishe hair ...

Okay, so one person so far has a history of h. pylori. No one else?

Anyone had gastritis on their endoscopy?

When alot of you talk about your gastroparesis, did most of you have upper scopes? Just curious if your stomachs were normal looking or inflamed.

Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days.

No H pylori on either my EGD or my last breath test a couple of months ago. I was diagnosed with gastritis, gastroparesis, hiatal hernia, etc etc etc in 2004 but ever since going on this healthy diet, all of my GI stuff is gone ... kow ... Maybe the key is eliminating all the foods that you're sensitive to ? Probiotics help me too though .. Especially 3 Country Life Dairy free or 1 Megaflora ... kefir is a good option too.

I still get bloated from time to time but I attribute it post menopause now. I'm pretty much eating foods that shouldn't cause bloating and yet it just shows up sometimes. Same thing happens with my hot flashes ...

FWIW .. I use Natural Factors 100 mg coated 5HTP. I've tried other 5HTPs, melatonin, theanine etc but this one is the only one that actually helps me sleep ... within 30 minutes, I'm out ... theanine does help with anxiety though if anyone needs this ..

Hi ... I don't know what my MVC, MCH or other levels are right now but since it relates to B12, I thought you might be interested in this ...

I didn't see any mention of the active forms of B12 in here ... I started an active B12 protocal based on a thread I found at Pheonix Rising and it might be helping me. It's hard for me to tell because I started a few other things at the same time because my labs came back saying that I was low on pregnenolone, DHEA and testosterone ...

My doc approved me starting all of this at once since I was supposed to be on the other forms of B12 and folate already. Shots never really worked for me unless I hadn't had one in about a month. Later, I tried Metagenics Vessel Care but even 1/2 of one made me hyper,gave me insomnia and caused UTI symptoms.

Here's my thread on this protocal at gluten free and beyond though. I give the links to Fred's (author of the active B12 protocal) in my thread ... HTH ...

http://glutenfreeandbeyond.org/forum/viewt...&highlight=

BTW. I was never tested for DI but my frequent urination and my leaking are gone now. I "think" all that urinating was my body's way of clearing toxins out of my system. AZO with probiotics keeps this under control. I was taking 4 a day but now I only need two every couple of days ... B complexes always made me urinate more frequently if that helps ...

All I could think of when I read your food list was the amount of carbs in those foods that you're eating ...

I have chronic hypoglycemia, recently proven via a GTT w/ insulin, which has gotten worse in the last few months so I'm just eating real meat protein (steak, salmon, mahi mahi, etc ) and brocolli or aspargus or lettuce with pumpkin seed salad dressing for breakfast and 0 carbs ... otherwise I feel sick ... the protein in eggs or bacon isn't enough to help me either.

I can have a few carbs later in the day but right now anymore than a slice of apple, a bite of banana or a slice of an orange and I start feeling sick again ... (This too shall pass ... )

I'd get a GTT w/ insulin if I were you ... or maybe you can borrow a monitor from a diabetic friend so you can watch your glucose ...