Noreen

{{{tearose}}}

I, too, am truly appalled by this treatment by the medical community. Your wonderful spirit has shined through your posts as you help us all try to cope with the 'why me' and 'how do I carve out a life after this when all seems taken.'

You have been a true inspiration to many as you have kept your spiritual side alive demonstrating that we can keep our humanity in spite of all that has happened. I would bet the initial conversation happened while you were standing and the physical symptoms started taking over while you were trying to express a thought - at least that is what happens to me.

You are such a wonderful person - I am so very sorry this happened to you.

noreen

I was told to take riboflavin and CoQ10 by the migraine specialist in addition to the magnesium.

here's hoping 2011 will be a kinder and gentler year for us all

Wonderful!

Let us know if you can figure anything out that helped

I find a chin length layered bob easier to deal with as raising my arms over my head increases symptoms. I also really couldn't deal with handfuls of long hair caught in my hands when showering. I do not know to what extent it has helped hair loss. I think mine rears its head during times of stress which also leads to increase in dysautonomic symtoms

The good news is that I have finally found a specialist in my area. I wish I could go to one of the major diagnostic clinics, but I'm not able to travel that far and I don't have anybody that could take me.

Wonderful news that you found a specialist near you. If you can get the blood pressure monitor before then you could chart out info to help you make the most of your appt.

Would keeping a crockpot of soup going help? My thinking is a cup of soup an hour would provide some liquid and nourishment and depending on how you prepare it could provide substantial salt.

Sue-

Let us know how it goes. I bought Gluten Free for Dummies but that is as far as I've gotten.

Julie-

Somehow I missed this the first time around. I am glad you found a doc to work on the problem.

I will be praying for you, Sweetie.

I understand. So far, I have physically made it to my appts.(my husband drives, I don't). There are times I don't feel up to it, though. I slump down in chairs, and other times my heart is racing or I feel really lightheaded, but somehow I get through it. AS SOON AS I GET TO THE EXAM ROOM, I have gotten to where I just lay down on the exam table whether I am uncomfortable or not. It feels like it helps get the blood back perfusing my brain so I can think when the doctor comes in. They have all gotten used to me lying down half the visit. The waiting rooms are the biggest hassle!

I do know what you mean, though. Too sick to go to the doctor--sometimes just too hard to muster up the energy and fight gravity.

Sue_

I've wondered how docs would react to that. I have been putting off appts because I don't feel up to driving myself, sitting in a waiting room (none of them have chairs with neck support) and then sitting in an exam room expected to understand whatever they are saying for the 3 minutes we have their attention.

Well, I am not a cook nor do I have any creative answer for you. I don't remember exactly what I ate when I started out other than the pretzels and cheese mini snacks that I had between meals. Nor did I/do I follow a formal "diet". I had a diabetes counselor explain the concept, which is that simple carbs result in insulin dump and high highs and low lows of blood sugar, so I needed to eat multiple smaller meals, with more complex carbs, and to ALWAYS eat either/and proteins and fats with the carbs.

My "diet" now is almost exactly the same every day, which is probably why it wouldn't work for many people, but maybe it could be a start. For breakfast, I start with the Slimfast low carb ready-to-drink drink. Around 9:30-10am, I have a Zone Perfect bar (caramel chocolate-for some reason, however they formulate it, despite the chocolate and caramel, I CANNOT get a sugar high from it. It's really amazing. In the past, I was guilty of trying to hyperfocus by using sugar with coffee in order to be super productive, but-and I've tried!-I cannot get that turboboost from these bars. Seriously amazing for maintaining even bloodsugar for me). It's the perfect non-guilty pleasure! Anyway, that keeps me until lunch. My lunch at work is a frozen Fiesta Quesadilla (sp?) box from Weight Watchers Smart Ones (I eat both quesadillas in the package). Or a giant chicken wrap from the cafe. For dinner, I make myself a wrap or two: microwave a lot of frozen vegetables (I vary the kind, but always with a lot of beans; so either I add in beans from another frozen bag, or I buy a veggie/bean mix); throw them onto the wrap and add cooked chicken (I buy it pre-cooked; did I mention I'm not a cook?) and cheese, then heat. I add on Thai peanut sauce. I usually do that every night because I like it and it's simple. But sometimes I make up a crockpot roast and then eat that for a few days with some carbs and veggies. I sometimes add popcorn at night, cooked in lots of oil. I don't know why it doesn't bother me, haven't researched it, but it doesn't and I like it I personally cannot drink fruit juices or eat much fruit-gives me the shakes. Sometimes I drink (along with protein like chicken) a little fruit smoothy that I make my kids, with yogurt, bananas and frozen fruit but that's it.

Your experience mirrors mine. The cardiologist's 'sheet' just made no sense to me due to listing limiting high carb veggies like carrots as bad. A diet based on nutrition made so much more sense to me and the Ornish book spells out how to do things based on your risk -pretty much go all out and strict if you are a candidate for heart transplant or cut yourself some slack if you have elevated trigycerides. The recipes in the book are written for beginning cooks.

I am a popcorn junky - have been for decades. It probably was my body's desire for salt. BTW, popcorn was on that xeroxed sheet. I used to have that same energy bar for either a mid morning or afternoon snack for probably close to ten years while I was working.

I envy you that your body gives you immediate feedback on what it can or will tolerate.

As for the low carb diet.....I didn't have a hard time going on it, and really felt sooo much better on it that it wasn't hard for me. I've read that it's like withdrawal for some people, as the carbs can be addictive. But once over that withdrawal hump, it's supposed to be the same kind of feeling-more energy and just overall better sense of balance (healthwise). I am very boring in my diet because I've found what works and don't stray very often, but I'm happy with it. At first, I had snacks of cheese and pretzels (combine carbs with cheese or fats). Now, I drink slimfast lowcarb drinks (regular diet drinks give me the shakes) and the lowcarb bars (try different ones; some work for me and some don't) for snacks. I don't feel like I'm missing anything usually (except around holidays!) because I have such negative reactions to cheating. It's like electroshock therapy

I really had a hard time trying to follow the low carb diet the cardiologist's office gave me - basically a one page xeroxed sheet. I had bettre luck (because it made sense to me) using the book The Spectrum diet by Dean Ornish. I still have problems preparing meals, however. What worked for you going on the low carb diet? I have spent days (my day = 4 hrs)searching on the net and it can get totally overwhelming. I have so many different things going on that I usually cannot tell that something is working well - everything is much more subtle than that.

Sounds like a good idea to hook up with a new endocrinologist. To me it seems odd that the gastroenterologist was not curious about it and whether it was contributing to the current problems.

A blood pressure cuff is a good idea. It would allow you to get more in tune with your body. Instead of salt tablets, I would stick to food sources of salt for the time being - a can of chicken broth at lunch packs a lot of sodium and no carbs for increased digestion issues. I liberally salt my food and have been better since switching to Himalayan salt. If you do a search for salt on the forum you'll be reading for a while.

Remember to increase your fluids, too. The rule of thumb I follow is half your weight in ounces as a minimum - 150 lb. person would therefore drink 75 ounces of water, gatorade, G2 or combination thereof.

all the best,

I always post something before my appointments with the fabulous Dr.Grubb but I have yet to find any members with appointments on the same day. If anyone has an appt tomorrow please let me know, it would be nice to put a face with a name!

Not I but I would love to know how it goes. Please post or PM me with what you learn.

noreen

Hi-

They tried me on a beta blocker when I was first diagnosed and I could not tolerate it at all. Severe fatigue was increased.

Does it make a difference if you break up activity? I am thinking of a nap/rest period in the afternoon - this approach helps me to stay up through dinner most of the time.

I've had fibro since 1990 due to MVA and NCS/NMH was dx in 2002 after I fainted while shopping. However, I had been fluid and salt loading since my primary told me it would help since 1997. I more than likely have CFS but since I have RA since 1998 and other autoimmune issues the docs don't use it.

Weather changes bring about the severe energy depletion you mention. As I try and sort out which symtpoms are fibro related and which are dysautonomia I put severe fatigue while being beaten by crow bars in the fibro category while severe fatigue - the type where you feel incapable of getting up even if there was a fire as combined.

Just my experience but for what it is worth, I would suggest nixing the beta blocker and try energy conservation. This stuff builds up and sneaks up on us as we are pushing through and trying to live.

I did go to an endocrinologist, but she didn't know what to do for me based on my symptoms. She just wanted to send me for the typical blood work. I didn't even bother having it done. Can you tell me what an endocinologist may look for? I'm pretty sure I have some hormones that are out of whack. I took one of those adrenal index tests that you do at home and mail away. It showed my DHEA level to be extremely elevated.

The pancreas is an endocrine gland which is why I suggested an endocrinologist. The endocrine system is quite complex affecting all bodily functions. Diabetes is the most well known disease of the endocrine system and there can be dysautonomia symptoms from the disease process; getting the diabetes under control gets the dysautonomic problems under control. That is just one example, of course. A quick wiki check yielded this entry.

There are so many different labs the docs run that it may seem they are running the same old, same old. Yet different specialists order a couple specialized ones at the same time to get a clearer picture of what is going on. Without getting the tests done, the doctor doesn't have the tools she needs to begin to unravel the problems. I highly respect any doctor willing to admit he/she doesn't know what is going on but is willing to work with you and investigate/research issues that come up. While your surgery was for some type of pancreatic overgrowth the underlying reason it occurred is not something that I would have a clue about and may necessitate getting referred to a specialist's specialist but that means being willing to work with an endocrinologist to eliminate the easy stuff.

It is very frustrating to have to go from doc to doc. We have been there. If however, you can have a chance to fully recover by getting the underlying problem sorted out I think it is worth fully participating with a qualified doc you feel comfortable with. Many of us can just barely control symptoms so we celebrate when someone is able to leave the land of dysautonomia.

Hi and welcome-

You have probably figured out that the reason you are dizzy and lightheaded after eating is probably because your available blood is being used by the stomach to digest and therefore your brain is somewhat deprived. Small meals should help somewhat.

Upping your salt is not a bad first step but since the cardio did not know what you were talking about looking for another one is a good idea. If you don't actually pass out many docs won't consider it serious enough.

Are you under the care of an endocrinologist? That route has been beneficial for some members.

You are complicated as are many cases here. Many of us endure the horrible brain MIA (missing in action) - no ability to think which when you try to describe it to MDs can often sound like ordinary forgetfulness due to stress. Extreme fatigue is a problem for most of us - no ability to take daily showers, e.g.

Hopefully just knowing you are not alone helps.

Well I tried a mix of orange juice, water and salt. I think it'll do the trick although I find the orange juice to be a little too sweet even diluted with water. But OJ does have lots of Potassium so I guess it should work as well as the Gatorade. The only advantage of Gatorade is you can take it with you everywhere.

Glad this mixture is helping you. One thing I've done which has helped is to dilute G2 by half. You could consider saving a few bottles and trying that when out and about.

Hi Willow-

I'll be praying that the docs find some way to help Mark and that your surgery is successful and uneventful.

Post and let us know how it goes.

noreen

Thank you to all who worked on yet another great newsletter!

Hey there nowwhat-

So sorry you have joined us bobble heads - it is not fun.

While I have dystonia, there is a difference between when that acts up and the general cervical instability from EDS. The dystonia is like a pulling while the other is, as you say, like a bobblehead. My docs are clueless as to the EDS but I am hopeful you are finding better help. At least the headaches have not gotten worse as often happens when the neck acts up.

75% Irish

25% English

I hope you get the answers you seek.

Sarah-

I think you should e-mail the docs at Vanderbilt as suggested by Dr. F's office. Your explanation is cogent and concise. Opinions from researchers/experts in the field should at the least be helpful when you see the new geneticist.

wishing you the best,

noreen

I have the same issues although I have attributed it to RA. It has always puzzled me, though, that my labs are good yet the symptoms such as this are still there.