How Do You Get Symptom Relief ?

[Dizzysillyak]

I was reading up on the symptoms and remedies list and couldn't find laying down flat recommended. On most days I absolutely have to lay down totally flat for 20 - 60 minutes several times a day in order to function. After sitting or standing for a few hours, my brain is dead, my body feels heavy and I don't feel like I can get a deep breath. I don't think to check my BP or heart rate because I'm in rescue mode by then ... sitting will help a tiny bit, but I still can't think well enough and really struggle to comprehend what I'm reading or understand what I'm hearing.

I feel crappy when I first lay down as if the blood is suddenly set free from my torso and can enter the upper part of my body especially my brain. Then after about 20 minutes, my breathing is back to normal and I find myself taking a deep breath ... I used to feel shakey or jittery when I laid down but I don't do that anymore.

Anyone else ? And do they know why this works ? Does it work for everyone ? Is this how you feel when you lay down ? Or how you feel when you just can't sit or stand any longer ?

Salt loading helps me but not enough ...

I already avoid gluten, dairy, soy, corn, etc but are there other foods that are known to cause this ? Garlic, maybe ? Maybe I still have too much gluten in my diet .. Please don't tell me chocolate can cause this ?

Are there foods you are using that help get rid of this ?

[EarthMother]

The biggest (ok, maybe just the most recent ) food change I made was to reduce the "free glutamate" in my foods. This is like MSG. But there are so many food items that contain "free glutamates" and when I looked at my diet (which included protein shakes and other "natural" or "health" products, I realized that EVERYTHING I was eating had a ton of this stuff. There a lot of info at The MSG Myth

Good luck finding something that works for you.

[Dizzysillyak]

Thanks .. that was interesting ... I stay away from most of the foods mentioned, but I'm going to try this for a week and see how I do ... I'll stick to a Paleo version though, no grains and red meats and fish too ...

Eat the following foods for at least 1 week and judge for yourself if excitotoxin (MSG, Aspartame, L-cysteine) enhanced foods are causing your health problems. Stop taking vitamins, supplements, protein drinks, protein bars, soy products, or protein products of any kind. If possible, stop taking over-the-counter medications and prescribed medications unless they are absolutely necessary during this period. Many fillers, binders, coatings, and gelcaps contain sources of glutamate. Avoid all candies, chips, crackers, ice cream, and processed snacks. Drink only water, organic whole milk (unless dairy intolerent), and Rice Dream rice beverage (plain original variety in blue box). Organic Valley whole milk in the gallon containers (it's not ultrapasteurized as paper cartons are) is a good choice. It can be diluted with water to cut down on fat intake if that is a consideration. Avoid coffee and tea for now.

Eat the following when hungry and/or at meal times.

1. Cooked brown rice.

Place 5 cups of short grain brown rice in large pot with 10 cups water, 1 teaspoon salt, and 1 teaspoon cane sugar. Bring to a boil and reduce heat to lowest setting, cover, and let cook 40 minutes. If you must use white rice, rinse very well to remove starch or glucose coating (glutamate sources) and cook as described for only 20 minutes. Store covered in refrigerator and eat with milk (cinnamon and cane sugar on top is good as breakfast or snack. Or eat warm with butter, pepper, and salt (kosher or canning salt only) with meals, or mixed with sauteed vegetables.

2. Eggs - no egg substitutes.

These can be cooked any way using mild olive oil or butter (cream and salt only). For less cholesterol, use the whites, making an omelet. Olive oil or coconut oil may also be used in any sauteeing.

3. Vegetables - Avoid potatoes, carrots, and beets for now.

Eat fresh greens - spinach, romaine (not iceberg), cabbage, broccoli, collards, and/or any organic fresh or frozen vegetables (if nothing has been added to frozen products.)

Wash vegetables in bowl of luke warm sudsy water or baking soda and water. Rinse well to remove waxes and sprays.

Other good produce are squash of any kind, cauliflower, sweet potaoes, avacodos, and celery. Tomatoes and mushrooms are quite high in safe natural glutamate. Vegetables can be eaten raw, steamed, baked, and sauteed. Processed free glutamate (the form found in MSG) can be created in the kitchen by boiling or roasting (avoid high temperatures) foods naturally high in glutamate. Simmer, grill, and roast at moderate temperatures. Protein in food + extreme heat + moisture = processed free glutamate. Example: Do not cook tomatoes or milk at high temperatures for any length of time.

4. Fruits - Eat only fresh fruits or those you personally have frozen or bottled that do not contain beet sugar, corn syrup or bottled lemon juice.

Peel apples and pears. Avoid fresh grapes and berries right now. Some are treated with Auxigro or sulfites, preservatives that many MSG sensitive people react to (covered in book).

5. Meat - Fresh turkey or chicken.

Use nothing frozen or treated with broth (MSG) solutions. Ask butcher if poultry is additive and preservative free. We do okay with Foster Farms boneless chicken breasts, wings, and legs. If in doubt, avoid meats during ths time. Do not eat canned or processed meats, sausages or cold cuts of any kind. The word here is fresh everything for now.

6. Cheese - Whole milk mild cheeses such as Colby/Jack and Mozzarella only.

7. Bread - Avoid for now.

8. Toothpaste - Use baking soda.

9. Fresh herbs, canning salt, pepper, and dry whole herbs are okay to use.

This is not typical of our diet. We have many healthy and delicious food choices that you can learn about (Our book contains over 400 recipes). During this test time, however, the newcomer's lack of information about the hundreds of sources of hidden MSG can be daunting. Thus, we keep it simple. This diet is safe and easy to follow.

[jump]

I have to lie down throughout the day, too!

I'll just get this overwhelming feeling like I have to lie down, and when I do my symptoms abate (although initially lying down usually makes my heart go a little wonky, but it doesn't last long).

I always assumed this is because lying down keeps the blood from pooling in the lower part of my body, and my brain finally gets the oxygen it needs to feel good.

I don't know about the food stuff though. I just avoid ALL processed foods except for some cheeses, and I don't eat gluten (or meat, but that's an emotional choice not a medical one).

[Dizzysillyak]

Thanks ...I was wondering how common this is ... I never realized how much it helped until most of my other CFS symptoms were gone. Now, I feel "healthy" until this feeling like I have to lie down comes over me ... and after laying down for about an hour, I'm back up feeling "healthy" and energized again. It's weird ...

Laying down more frequently throughout the day helps a lot but it's such a pain ...

How long have you been GF ? I saw a link on this board to Dr. Hadjivassilou's work on gluten but so far being GF hasn't gotten rid of this symptom for me ..

Anyone find that excercise helps get rid of this ? I was thinking that the recumbent bike might have helped this since it just gets the blood moving and doesn't tax our bodies ...

Since I don't have a recumbent bike at home I was considering doing the bicycle while laying on my back ...

[Dizzysillyak]

Got another question ...

How long can you all stand up before feeling light headed ? For me it's usually 20 minutes and then it's downhill from there ... I ask because when I first started researching this someone told me that was how long it took for our bodies to use up all the glucose we have. And that we switch to glycolis after that ... so I needed to look at blood glucose regulation.

That was what got me started on the Paleo diet. The Paleo diet is known to fix blood glucose problems ...

Anyone know of any research on Blood Glucose and OI ?

BTW. I recently found out that I'm low on chromium and chromium is needed to regulate blood glucose ...

[janiedelite]

Got another question ... How long can you all stand up before feeling light headed ? For me it's usually 20 minutes and then it's downhill from there ... I ask because when I first started researching this someone told me that was how long it took for our bodies to use up all the glucose we have. And that we switch to glycolis after that ... so I needed to look at blood glucose regulation.

I think each of us probably has different standing tolerance. I know mine can vary somewhat from day to day. I'm always dizzy, though, from the moment I sit. Today I was able to vacuum the floor (in one room) for the first time in over a month. If I stand too long, vision shakes, head pounds, get sharp chest pains, and can't take a deep breath. I have pretty bad pooling, though, I think. I can even see mottled skin on my side when I'm laying with that side down. Arms and legs are veiny and purple. I had my first episode of tachycardia over 2 years ago, but have only had disabling symptoms of OI for the last 7 months, and I seem to be getting worse every month. Compression hose have helped somewhat. The only thing that helps me is laying down with my legs up, dim light, not much noise. If I rest like this for a few days then I might be able to use a wheelchair and go on a short outing.

I can sit for maybe 10 or 15 minutes with the compression hose that go up to my abdomen until I start feeling really wasted. Just my experience. I'm curious to hear what other people's experiences are because I'm so new with this! I don't really have a frame of reference!

Janie

[ramakentesh]

Some people with prediabetes or diabetes have dysautonomia as a symptom. People with primary Dysautonomia dont have measureable blood sugar regulation abnormalities.

You feel better when you lie down because orthostatic intolerance is releaved by lying down.

[MelissaCrystal]

In most of the articles I've read, it recommends laying down with your legs slightly elevated---gets more oxygen to the brain, and according to one of the articles, prevents morning troubles.

[mkoven]

My upright tolerance has varied tremendously since I started having problems. there have been times when I couldn't sit up for more than a couple minutes without feeling awful. Now, I can be upright pretty easily (except around my period), as long as I am medicated, compressed, and can keep moving. If I stand still, I feel ill within minutes. So I don't! I keep moving, make sure there is a nearby seat, or my rollator with a seat. Around my period, I do sometimes have to lie down in a recliner or on the floor with legs up if things are really bad.

[Dizzysillyak]

Got another question ... How long can you all stand up before feeling light headed ? For me it's usually 20 minutes and then it's downhill from there ... I ask because when I first started researching this someone told me that was how long it took for our bodies to use up all the glucose we have. And that we switch to glycolis after that ... so I needed to look at blood glucose regulation.

I think each of us probably has different standing tolerance. I know mine can vary somewhat from day to day. I'm always dizzy, though, from the moment I sit. Today I was able to vacuum the floor (in one room) for the first time in over a month. If I stand too long, vision shakes, head pounds, get sharp chest pains, and can't take a deep breath. I have pretty bad pooling, though, I think. I can even see mottled skin on my side when I'm laying with that side down. Arms and legs are veiny and purple. I had my first episode of tachycardia over 2 years ago, but have only had disabling symptoms of OI for the last 7 months, and I seem to be getting worse every month. Compression hose have helped somewhat. The only thing that helps me is laying down with my legs up, dim light, not much noise. If I rest like this for a few days then I might be able to use a wheelchair and go on a short outing.

I can sit for maybe 10 or 15 minutes with the compression hose that go up to my abdomen until I start feeling really wasted. Just my experience. I'm curious to hear what other people's experiences are because I'm so new with this! I don't really have a frame of reference!

Janie

Janie,

It is interesting to see how others are doing with this ...

I can empathize with you because I felt that way most of the time for 16 1/2 years. While I can't guarantee you that eliminating common food intolerances (gluten, dairy, soy, corn, eggs, chemicals, etc) will help you, but it seems to be helping a lot of people besides me ...

Gluten is the biggest culprit for me, but others say that soy or dairy or corn, etc was causing most of their symptoms. The muscle weakness and the visual problems sound like gluten ataxia to me. Most of this went away after one year on this diet.

While just eliminating those foods helps a lot of people, I had to go on the Paleo diet (just meats, low carb veggies and limited fruit) in an effort to get my chronic hypoglycemia under control. The Paleo diet eliminated my morning weakness and some of my other visual problems. I have the feeling it could be behind my dysautonomia too. But I don't know yet.

Take care ... Marcia

[Dizzysillyak]

Some people with prediabetes or diabetes have dysautonomia as a symptom. People with primary Dysautonomia dont have measureable blood sugar regulation abnormalities.

You feel better when you lie down because orthostatic intolerance is releaved by lying down.

ramakentesh,

I haven't been diagnosed as pre diabetic but I think I am. My GTT showed hypoglycemia 2 years ago but was normal this time, other than jumping to 180 at the 1 - 2 hour mark. I really need to find that report and go over it with my new doc. She seems more up on how the body really works than my other doctors. Everyone else just told me to eat every 2 -3 hours ... yeah, right ... that never worked for me ...

[Dizzysillyak]

In most of the articles I've read, it recommends laying down with your legs slightly elevated---gets more oxygen to the brain, and according to one of the articles, prevents morning troubles.

Melissa,

I've started doing this in my car between stops while running errands. It helps a little, but would help a lot more if I could lay flat. What kind of morning troubles ? I'm good in the am now that my hypoglycemia isn't so bad.

[Dizzysillyak]

My upright tolerance has varied tremendously since I started having problems. there have been times when I couldn't sit up for more than a couple minutes without feeling awful. Now, I can be upright pretty easily (except around my period), as long as I am medicated, compressed, and can keep moving. If I stand still, I feel ill within minutes. So I don't! I keep moving, make sure there is a nearby seat, or my rollator with a seat. Around my period, I do sometimes have to lie down in a recliner or on the floor with legs up if things are really bad.

mkoven,

When you said your OI varied, it made me think of how salt must have been doing this to me all those years and I never realized it. I'm fairly certain now that on the days I was doing well it was because I'd eaten plenty of salt.

Good reminder on staying active.

[jump]

How long have you been GF ? I saw a link on this board to Dr. Hadjivassilou's work on gluten but so far being GF hasn't gotten rid of this symptom for me

In my case, I actually don't think eating gluten was causing my POTS symptoms or that eating GF will relieve my POTS symptoms. Instead, I think perhaps my POTS is related to some kind of autoimmune connection -- but this is just my own speculation, there isn't any great research I can find that really proves this -- but not CAUSED by my diet, and so far no changes to my diet have affected my POTS symptoms at all.

In my family, on both my mother and my father's side, every single woman has either Hashimoto's thyroidisis, rheumatoid arthritis, or diabetes I, or more than one of these conditions. These conditions are related to each other and are somehow genetically linked although the science isn't really specific on how. They are also linked with celiac disease and gluten intolerance, which are also autoimmune. My mother and sister have gluten intolerance (as well as thyroid disease) and my mother tested positive for RA although she has no symptoms yet, thankfully. I also have the thyroid problem and I've had a LOT of GI and digestive problems; for a few years I assumed the GI problems were related to ANS dysfunction (since that is a common problem) but, given my family history, I've started to wonder if perhaps I'm just gluten intolerant like everyone else. I've been eating GF for only a few weeks so far but so far it has helped my GI problems considerably.

I do wonder if my POTS is related to this vague autoimmune problem that runs in my family; at least two of my family members with the autoimmune problems also have dysaut symtpoms, although I'm the only one who has sought treatment for my dysaut. I suspect they are somehow related. Still though, I'm eating GF to solve GI problems which may or may not be related to dysautonomia, but are definitely not related to POTS -- my core POTS symtpoms (tachycardia, uneasiness and discomfort standing, heart palpitations, blood pooling) so far have not been affected at all by my change in diet. I just figure if I can get my tummy to be feeling a little better then that's one less thing to deal with!

I haven't found any dietary changes that affect dizziness at all, besides eating more salt. I'm not sure you will find something dietary that will fix those symptoms, although if you do please share!!!

[firewatcher]

How long have you been GF ? I saw a link on this board to Dr. Hadjivassilou's work on gluten but so far being GF hasn't gotten rid of this symptom for me

In my case, I actually don't think eating gluten was causing my POTS symptoms or that eating GF will relieve my POTS symptoms. Instead, I think perhaps my POTS is related to some kind of autoimmune connection -- but this is just my own speculation, there isn't any great research I can find that really proves this -- but not CAUSED by my diet, and so far no changes to my diet have affected my POTS symptoms at all.

In my family, on both my mother and my father's side, every single woman has either Hashimoto's thyroidisis, rheumatoid arthritis, or diabetes I, or more than one of these conditions. These conditions are related to each other and are somehow genetically linked although the science isn't really specific on how. They are also linked with celiac disease and gluten intolerance, which are also autoimmune. My mother and sister have gluten intolerance (as well as thyroid disease) and my mother tested positive for RA although she has no symptoms yet, thankfully. I also have the thyroid problem and I've had a LOT of GI and digestive problems; for a few years I assumed the GI problems were related to ANS dysfunction (since that is a common problem) but, given my family history, I've started to wonder if perhaps I'm just gluten intolerant like everyone else. I've been eating GF for only a few weeks so far but so far it has helped my GI problems considerably.

I do wonder if my POTS is related to this vague autoimmune problem that runs in my family; at least two of my family members with the autoimmune problems also have dysaut symtpoms, although I'm the only one who has sought treatment for my dysaut. I suspect they are somehow related. Still though, I'm eating GF to solve GI problems which may or may not be related to dysautonomia, but are definitely not related to POTS -- my core POTS symtpoms (tachycardia, uneasiness and discomfort standing, heart palpitations, blood pooling) so far have not been affected at all by my change in diet. I just figure if I can get my tummy to be feeling a little better then that's one less thing to deal with!

I haven't found any dietary changes that affect dizziness at all, besides eating more salt. I'm not sure you will find something dietary that will fix those symptoms, although if you do please share!!!

THere is a common link, but it is not well understood: histamine. Mast cells are implicated in all those disorders including celiac, as well as being both the "autoimmune" trigger and mechanism for creating auto-anitbodies. I wonder if antihistamine regimen would help H1 and H2 (like zyrtec and zantac)? MCAD is found with POTS, but I don't think anyone knows if it is causal or just comorbid.

Once by brain comes back, I intend to talk to my allergist/immunologist and Vandy about the possibility of using anti-histamines prophylactically to slow down my production of auto-antibodies and possibly short-circuit some of the nasty things that I already have anti-body titers for (myasthenia gravis and hashimoto's they haven't checked for pituitary antibodies yet, but it would explain the Diabetes Insipidus.) This prophylactic treatment has been shown effective in the prevention of new lesions in MS as well as slowing/stopping some autoimmune disorders RA.

All the articles are in the Mast Cell Articles thread.

I miss my brain...

[Dizzysillyak]

I have to come back and read this sometime but it's too late tonight ...

I wanted quickly add that I'm finding relief at times by taking a little extra salt when I'm feeling puny.I was out today and needed a boost so I took one of those small salt packages, added it to about an ounce of water and gulped it ... and it worked ...

I've noticed this before though ... the first time I ever salt loaded this happened too ... I have to remember to do this more often ...

And this is in addition to the normal salt water I drink all day ...