Dizzysillyak

Forgot to say that when I first went to my celiac support group meeting and asked if others had ataxia, orthostatic problems, etc most had no idea what I was talking about. BUT once I described the symptoms many could relate.

I'm assuming they simply got a pat on the head by their doctors vs a proper dx for their symptoms. Most were probably told that they're just getting older or anxious. Haha tc ... d

I started taking melatonin, 5htp, Benadryl and either Theanine or Klonopin

5-6 years ago because I hadn't slept well in almost 20 years as the result of accute onset me/cfs with numerous neuro problems. I've since learned that my neuro diagnosises are common in MS.

This combo worked great for sleep but caused my OI to become more severe. I was having days where I could barely stand up without getting POTS.

I made a huge mistake taking these every nite for all those years. I'm still having some days / hours where my OI is bothersome but the improvement is remarkable. I suspect part / most of my OI problems now are because I still need Klonopin for nocturnal myoclonus. And still take 1/4 tsp Benadryl for allergies. I know my OI is better without anything that makes me drowsy so I'm working on eliminating them somehow.

Just wanted to share for those taking anything that makes you drowsy.

tc ... d

ps. most of my improvements since 2005 are from watching my diet. I follow

a mostly paleo / wahls / low oxalate diet. I have the dq2 gene tho so gluten was never ok for me.

Dr Hadjivassilou should have the answers to your questions.

I had it from 1990 - 2006. I had sudden onset me/cfs with numerous neuro symptoms back in 1990 but most vanished 1-2 years post gf diet. I get it again but much milder with gluten exposure.

Glucose tolerance test. Checking for insulin can show hyperinsulinemia.

Good to hear you're feeling better. I'm always fighting utis but mine appear

to be from oxalates. I've cut back on these again and am having less

urinary symptoms. I just found out that I was getting stones in 2008 but

suspect the problem started sooner. Recent studies are showing oxalate problems are common for leaky gut. Fun fun fun ..

just an fyi on the cipro. It's a flouroquinonlone and these can cause

severe reactions in some people. I was given Levafloxin and after about

4 days I noticed slight shoulder pain but just ignored it. My shoulders and knees went out in Jan

2013 and I'm still dealing with weakness and imobility.

Hope you feel better soon. tc .. d

I have to eat sonething every 2 hours too but I'm a celiac so my digestion is

hosed.

I was dx with hyperinsulinemia via a gtt plus glucose. My bg never gets below 60s, but I feel and look horrible at that number.

I read that diabetics are told to eat something sweet prior to exercising and found that if I eat sonething sweet every 20 minutes when active I function much better. It's made a huge difference in taking long walks, doing my laundry, etc.

tc .. d

Chronic constipation, hard stools, unless I take magnesium citrate everyday. Too much is as bad as too little so I'm always playing with this. Nothing works as well tho and I've tried it all. Digestive enzymes, more fiber, more raw fruits and veggies, coffee etc etc.

Other digestive symptoms resolved via diet changes.From what I've heard explosive diarrhea is common for gluten intolerance.

Magnesium citrate helps me with this. I use Natural Calm and ad a pinch

of sea salt. I can't have a normal non painful bm unless I take this so I figured it has something to do with chronic dehydration.

I took muscle relaxers until I realized they were making my eyes lazy. My right eye esp would wander. Funny not so funny story. I saw a neuro optomologist for this problem and he was clueless. Got off meds and problem was gone.

also, fwiw, certain foods are known to cause pain. Tomatoes affect me but

not sure what else. Magnesium helps this reaction tho. fwiw Doctors Best chelated mag has a good rep but never helped my bms.

tc ... d

Sorry to hear you're sad on your birthday. I didn't see anyone mention

eliminating toxins. Many of us find that we have food intolerances, esp

gluten, dairy, corn, soy and chemicals and avoiding those should make

you feel better. You may be intolerant of something I didn't list too tho. These are just the common intolerances.

I've found that 5htp helps me avoid being sad. Exercise is great too if

you're able.

fwiw, I have a daughter about your age who had multiple medical

problems that are gone via diet and exercise. Imho, it's worth a shot.

tc ... d

Add me to the bad girls club. ; )

I've probably only smoked 1 pack of cigs in my life but I experimented with both cigarettes and nicotine lozengers recently and

found that cigs were more effective at calming me while at the same time

made my thinking clearer. The losengers made me jittery but also

improved my thinking. I stopped because I already have lung scarring and noticed that I sweat profusely after smoking. I didn't try the gum, patch

or chewing it.

The coffee sozo makes me less jittery than any other coffee I'd ever tried but caffeine pills work better and don't make me jittery. I have to take extra sleep meds and supplements if i use caffeine but I don't mind. I've only tried the Leader brand caffeine pills and I break them into quarters.

yes as long as I haven't eaten any of the foods that I'm intolerant of

or taken too much of any med that affects my brain (benadryl, klonopin,

or pain med) and I'm not hungry or suffering from low blood sugar.

it takes me a solid hour to recover from a pots episode tho. I have pots

episodes everytime I'm upright for too long. For me that's typically 20 - 30 minutes of standing. Doing the dishes or cooking nails me.

Most of my symptoms were from intolerances and allergies.

Sorry to hear you're going thru a rough patch. Me too. My pity part consisted of eating waay too much gf junk food and I'm paying for that now too. Lol.

I took up smoking, one a day, several months ago to see if nicotine would help my oi. It didn't but it made my thinking clearer. I could multitask again. I noticed an sharp increase in sweating and assume it was my body detoxing all those chemicals. This stopped as soon as I stopped smoking.

Nicotine lozengers didn't work as well and caused digestive issues at least 1/2 the time.

I didn't notice a hr increase but I had more energy. My bp and hr run on the low side.

Hope you feel better soon. D

sorry you had to go through such a traumatic experience. I'm not sure

what to think about how they decided to treat you and that you were stable enough to come home. Since you changed your meds tho maybe you had a bad reaction.

as far as weight loss tho maybe you could use smoothies made with organic rice protein powder. I make these everytime I'm having digestive problems now. Bananas and flax meal add calories. I use 3 servings per smoothie for extra protein.

Homemade meat broths, esp chicken, may help too. I typically add a few

veggies and a little overcooked soft meat for soup.

Hope you feel better soon. D

I do this if I've had too much caffeine or certain b supplements. It doesn't always happen right away and so it was hard for me to figure this out.

I used to feel like i was buzzing non stop until i stopped eating gluten. On the celiac dot com board they called this buzzing and it was common. Mine stopped within the first 24 hrs of being gf.

What my Dr called the elimination diet wasn't enough for me. It included wheat but didn't include gluten and that is my biggest offender. I think the list of improvements is in my signature. I have the dq2 celiac gene tho.

I'd say it took me about 2 years of experimenting to discover all my food intolerances. I stayed on a restrictive diet then experimented with one food to see how i reacted.

Discovering that bacon and tomatoes triggered my fm pain helped. Also learning that high oxalate foods trigger pelvic pain helped. I'd been living with pain for so long being without it was like a miracle.

I've been watching my food for 8 years now and still get most of the same symptoms i had. Taking mast cell meds help but I'd be asleep all the time if i took all the meds i need to control my reactions.

So definitely a huge difference for me. tc ... d

Dextromethorphan has been shown to block the action of chemicals that relay pain to the spinal cord. It works by blocking a receptor known as N-methyl-D-aspartate or NMDA, which responds to these pain-transmitting chemicals. For this reason, Staud and colleagues evaluated the drug for pain control in fibromyalgia.

Thanks for the info. I'm going to try dextromethorphan even tho I'm no longer experiencing Fibro pain since I avoid the foods that cause it for me. FWIW tho, taking mast cell meds appear to allow me to eat tomatoes without experiencing fibro pain. I'd have to come off the meds and eat tomatoes to know for sure and I'm not going to do that because they're helping my allergies so much.

I can relate to the excitotoxicity theory and am curious as to how it may relate to my POTS. Gluten and stimulants (coffee and chocolate) are two of my known excitotoxins. I overproduce gluten antibodies (dx via stool test) tho so this keeps my immune system in high gear. I don't feel wound up if I avoid gluten and other stimulants like caffeine.

I'm looking for a way to stop my body's reaction (adrenaline rush ?) to hypoglycemia too tho. I've tried the dietary route and found success in relieving many of my "CFS" symptoms, like ataxia, brain zaps, brain fog, etc but not hypoglycemia from hyperinsulinemia. I over produce insulin so my problem may be purely physical.

The Atkins or Ketogenic diet didn't work for me because I have petite mal seizures and need sugar to stop these. I don't appear to have the chemicals (glycogen ?) necessary to keep my glucose levels up when active and have to rest and eat something sweet every 20 minutes. Resting is just as important as eating something because I need to replenish my blood glucose and can't if I'm constantly using it.

It will be interesting to see if dextromethorphan will stop this reaction. I have the feeling that my OI is from physical problems (LBBB, lung scarring, brain damage, etc ) and not excitotoxins since I've eliminated all the ones within my control. Still I want to see if it helps my reaction to hypoglycemia. TX ... D

Hi. It's been years since i looked at this. They were either dx

via mri or cat. And we're gone about 2 years post gf. If you google

Ms gluten you'll find info on this. Hth .. d

Most of my "CFS" symptoms are under control via diet (food intolerance avoidance), environmental toxin avoidance, supplements and Klonopin but nothing so far has helped my OI consistently. Salt loading helped at first as did taking mast cell meds like Wal-zyr.

My initial reaction to eliminating toxins in 2005 was amazing. I no longer felt like I was buzzing all the time. My narcolepsy was gone. My myoclonus became controllable. Brain zaps stopped. Digestion improved. Vision improved. Ataxia resolved. I felt more alive than I had in 16 years.

Most of the improvements I saw were within the first 2 years. Now I'm using techiniques I've learned to avoid symptoms. Things like the combo of melatonin, 5htp and Klonopin for sleep. Natural calm for chronic unresolvable constipation. Mast cell meds for chronic allergies. And monitoring my sugar intake to accomodate my hyperinsulinemia.

I have several dx of physical damage (left bundle branch block, lung scarring, hyperinsulinemia, white lesions on my brain (resolved via diet), ataxia (resolved via diet), etc) that could explain my OI tho. I can't imagine that even tho my ataxia and white lesions are gone that my brain fully recovered after this had gone on from 1990 - 2006.

I was told that I had "full blown" celiac disease by the time I started trying to heal my body tho and the brain damage that resolved showed that I had other problems with gluten also. Theglutenfile explains this. I have the DQ2 gene so from what I've read neuro problems can be expected.

Sorry this is so long. The point I was trying to make in all this is that sometimes damage can't be healed but that sometimes certain dietary restrictions, supplements and meds can be used to control symptoms.

I've yet to try yoga but thanks for explaining the different types. I'll look into that. Dizzy

Data was analyzed from a prospectively collected registry-

database in a study approved by the Institutional Review

Board. Subjects who presented to the Cleveland Clinic from

January to December 2007 for evaluation of symptoms of

orthostatic intolerance and subsequently diagnosed with

POTS on head-up Tilt test in the Syncope Clinic were included.

No differentiation was made between primary or

secondary POTS; patients may have had orthostatic intolerance

as the lone medical problem or in conjunction with

other potential causes of autonomic dysfunction such as diabetes.

It is standard practice in our Syncope center to not

stop the patient’s medications prior to Tilt in order to obtain

“real world” diagnostic information and to avoid problems

with medication discontinuation especially if they are indicated

for other diseases (e.g. angiotensin converting enzymeinhibitors

and beta-blockers for coronary artery disease). No

differentiation was made between ‘Early’ versus ‘Late’

POTS [3]; the HR increase by 30 bpm or to 120 bpm may

have occurred within 10 min (Early) or after 10 min (Late) of

Tilt.

Since, in our experience, the response of blood pressure

to tilt in POTS patients varies (e.g. no change, drop in systolic

and/or diastolic pressure), patients with orthostatic hypotension

during Tilt were included; however, patients with

a vasovagal response were excluded. Patients with pacemakers,

significant artifact or arrhythmias on ECG monitoring,

missing data or discrepant data (1 patient) were excluded.

I have a left bundle branch block so I would've been excluded. I really need to get this looked at further ... tx for the article. D

PS. I know from using a BP and HR monitor at home that it takes my body an hour to fully recover from hypoperfusion. My hr goes from the mid 70s to the mid 60s in the last 15 minutes of being supine and I finally start feeling healthy again. If I get up too soon, my hr jumps right back up to my POTS rate within the first minute.

Congrats. Any good news is good to hear. I eat raw red cabbage and didn't notice a difference

but I'll try eating more to see if it helps. It's great for digestion tho.

Everytime I get glutened I have a neurological reaction so you may want to look at your other foods,

supplements, drugs, etc. They say when we first eliminate gluten or reactions become

more severe. Taking dpp-iv, either country life or enzymedica, help me with this but I've

been gf for 8 years now.

One other caution I wanted to add just in case. I damaged my esophagus by juicing

veggies with a rough texture and high in oxalates. I was just using a cheapo juicer tho

so I was getting some pulp. I stopped juicing last year but my esophagus is still

getting inflamed easily. I never had this problem prior to juicing and noticed a consistent immediate

reaction to drinking my juice right before I stopped juicing.

Tc ... D

Hi jackie,

Great article. Very positive. Good luck on your fund raiser.

Just an fyi about your symptoms. I had 9 of those when I caught h pylori and parasites at the same time.

I understand a cdsa is the best way to dx these. But anyone can attempt to treat these on their own.

I was told my infection was too severe for natural treatments tho. I used these in addition to prescription

meds tho.

Before and after treating these, my oi symotoms are purely from hypoperfusion. Tc .. D

I don't look at my orthostatic intolerance as dysautonomia. But most of my symptoms of 16 years went away

or are under control via diet or supplements. Or they've been explained by other labs my integrative doc ordered when I started seeing her 4 - 5 years ago. I take a couple

of drugs but they're for seizures, allergies and digestion.

The cause of my oi is still unclear but I have enough possible physical damage and labs to explain it.

I'm gluten intolerant with gluten ataxia (resolved via diet), celiac, hashimoto's and no telling what

else. I suspect my lbbb is from gluten too. Theglutenfile explains this.

Fwiw, I'd focus on telling people the symptoms of oi and how to do a pmttt themselves. Learning I had

Pots completely changed the way I run my day. Laying down eliminates my oi but getting my legs level with

my heart helps. At least if someone knows they have oi they'll know it's a real problem.

Good luck .. D

You seem to misunderstand what cfs is. It's been out of the psych disorder box for decades. It is an umbrella

term however so those dx with this really need to look further for themselves. Doctors who dx this

are taking the lazy route. Pots the syndrome is an umbrella term too. Pots dx via ttt is real tho.

From what I've seen most chronic illnesses are umbrella terms.

Granted the info on cfs or any chronic illness can be confusing but there's a thread on pheonix rising that can explain this.

It's under the general treatment section and it's posted by jarod. Sorry but it's too early for me to remember

the name. This list can apply to any chronic illness tho.

Many people have reversed their chronic illnesses via diet and supplements but not all damage can be

reversed. No one knows unless they try tho. An integrative doctor can explain this. Dr teri wahls

does a good job here.

Hth .. D

If you google cfs cytokines prohealth you'll get an article that states food intolerances increase cytokines.

If you want to reduce these in your body you need to remove all the offenders. This is why the

Paleo diet works so well for many.

Taking one food out at a time won't reduce your cytokine level enough

for your body to begin healing if you have multiple intolerances. Many of us do.

I'm off gluten, dairy, soy, corn, etc and all chemicals. This didn't fix my oi but I have gluten intolerance

that resulted in gluten ataxia (resolved via diet), celiac, hashimoto's and no telling what else. Theglutenfile explains this.

Tc .. D

Good to hear you're familiar with food intolerances. Rye contains gluten and is a problem

for anyone who's sensitive to gluten. We actually see a fair amount of gluten intolerant people on this

board.

Food intolerances can be difficult to spot so hopefully you've kept a food diary and eliminated

everything you eat regularly for at least a week or so. Testing for allergies or antibodies can help.

I actually produce antibodies to egg whites and had no idea.

If not already, drinking distilled water or high quality spring water may help. I'd skip the green tea

for now and stick with water. You may be reacting to the caffeine. Now that I've stabilized I can use several non dairy milks but that took

time. I suspect Zyrtec is helping me with this too.

If you're taking supplements or meds these probably need to intolerance free as well. I react very

quickly to lactose and soy in supplements or drugs.

Not to be too gross but parasites and bad bacteria can cause big problems for some. A cdsa will

show these or you could just try treating these yourself. Having parasites and h pylori at the same time

made me too weak to stand up for any length of time.

Hope you feel better soon. D