potsgirl

Hello All~

Just wanted to let anyone interested know that on today's Dr. Oz Show Dr. Teitelbaum will be discussing CFS and fibro, along with his "SHINE PROTOCOL". Do I know what that is? Well, no....but I will after I watch the show.

Cheers,

Jana

I get some weird type of pretty severe vertigo once a year or so. I can't turn my head to either side without my head spinning and feeling nauseous. Laying down and sitting up causes these symptoms, too. For about a week, I need to just lay still and let it play itself out. My ENT thinks it's a viral infection - but this was before my dysautonomia diagnosis. Very much a pain in the neck! Seems to happen when seasons change...At first they thought it was Meniere's, but I really don't think they're sure of anything. Also get nystagmus with it - where your pupils go back and forth in a horizontal position very rapidly.

Anyone else?

Cheers,

Jana

I usually don't have problems with my yearly mammograms, except some dizziness from standing in one place too long - and it takes them some time to locate enough breast material to try to flatten out! (kidding....sort of)

Cheers,

Jana

Hi Susan,

Welcome back to the Forum. You'll find so many others here who understand almost exactly how you're feeling. It's got to be especially difficult for you living with your mom and dad, especially when you're dad's so ill and your mom is expending a lot of energy taking care of him. Do you have any friends besides your brother/niece who might be able to stop by just to visit?

It's great that you've seen improvement! This must give you hope that one day you'll see even more improvement and possibly be able to volunteer or take a part-time job to meet others.

Keep concentrating on your mindfulness, and meditation is great, also. Positive thinking can go a long way!

Cheers,

Jana

From what I've heard, anything under 90/60 is considered low BP. They keep bringing the BP range lower, as the majority of the medical field seems to think that numbers this low are still healthy and perhaps desirable. Anyone else heard this?

I want to endorse what Jan wrote. I don't think I can say it any better than that, so please know I'm here and supportive, too. You will make a difference in their lives just by being a part of them. That's the most important thing - that you love them and they know it.

Cheers,

Jana

Erika,

I can completely understand. I struggle with these feelings a lot, too. I used to be so active, like so many of us were, and now am pretty content to hang out at the house, although I miss social activities sooo much! Everyone wants to go to lunch, or for a drink, or have some of us couples go to dinner, and 98% of the time I'm simply not up to those things. I'm happy to get out 4 days a week to walk and perhaps run a couple of errands and make a doctor's appointment.

I got ill soon after I moved to Tucson, and hadn't been at my job too long, so I was unable to establish solid friendships before I became mostly home-bound. I would love to go out and do 'normal' things again, but just don't have the energy. And then I feel guilty because my boyfriend ends up staying home a lot, too. He feels bad leaving me home alone...but I encourage him to go.

At least we have this group that understands very well what we're going through. My best, and take care!

Jana

That's great that your appointment went so well! I'm sure Dr. Grubb will be even better at getting you an accurate diagnosis and treatment plan. Let us know how it goes! I'm starting to wonder if perhaps I should try to go there as well....

Cheers,

Jana

Hi Ernie,

I was so happy to see you post again after such a long time away. How wonderful that you're doing so well and dancing, even! It gives me hope that someday I'll be able to dance again, too, something I've really missed. I hope to see you post more often now, and please keep us informed on how things are going. Yay for you!

Cheers,

Jana

At least a couple of days a week. I'm really not sure what causes this, but it certainly can be annoying.

If you don't want to drink your calories (something I hate to do, too) there are other good electrolyte drinks out there other than Gatorade. I think there are several of us here that now drink NUUN (pronounced 'noon') which comes in table form and you just add it to your water. It's 5 calories and low sugar. Another good drink supplement is 'Elixir' by Camelbak. Same kind of deal. You can find these in sporting goods stores on online. Just in case you're interested - I couldn't stand Gatorade!

Cheers,

Jana

Maxine,

I agree with you 100%. Certainly there are medications that can cause weight gain, and our inability to do much aerobically doesn't help with weight loss, either. What I wanted to point out was that each of us needs to address these situations individually, with their doctors, who know their medication regimens and physical limitations to come up with the best plan. My doctor believes that the more exercise, whatever that may be, that I can get in each day or week the better.

Cheers and good luck to us all,

Jana

I think Katherine's post makes a lot of sense. I'll be getting the H1N1 shot, because I know I pick things up easily and the risks don't outweigh the benefits.

I think that your doctor is the best person to answer this question for you, but I'm wondering why you want to take Midodrine since your BP is pretty close to normal?

Cheers,

Jana

Unfortunately, that's not the way it works. If you took a look at the population that has high blood pressure, (but not POTS), there are a majority who are overweight, in general. I think a good idea is for you to talk to your doctor about the best way to start on a moderate exercise and eating plan. You may need to count your calories for a while, and it may surprise you how little it actually takes to sustain a healthy weight range. Also, most of us are not very active, so we need even fewer calories.

There are some good web sites that will give you calculators and tools to figure out how many calories you need daily, your BMI, and other helpful tips (self.com). A visit to a nutritionist is also a good idea. You can get there - it just takes some time.

Cheers,

Jana

Hi Rene~

Webmd.com has a lot of information about Taurine under it's drug and supplement tab. All of the sources I looked at implied that Taurine is similar to an amino acid, and that it would help with protection of your heart and also bring hypertension down. It's been proven safe in studies of up to one year. I think the only uncertainty about it's safety is in longer-term usage. It sounds like this may be a good option for you.

Good luck and let us know how it works for you!

Jana

Good luck with your surgery Friday! I'm sure all will go well. When I had my gallbladder taken out they used the inflatable boots on me, and I know that helped. I'll be thinking of you and keeping you in my prayers. Let us know how it all goes.

Take care,

Jana

Thanks for posting this - It's something I'd like to try, too!

Cheers,

J

I will certainly include Sophie and the rest of your family in my prayers. I love that you've set up a fundraising site in her honor. I'll certainly make a contribution.

Take care, and please keep us up-to-date on her progress,

Jana

Hollie is right - you should get started right away if that's what you decide to do. Just an FYI: The amount of money you can make ($400, for example, that Hollie quoted) varies between each individual case. Also, the amount of money you receive also varies depending on how much you have contributed to SSI in your past jobs. The average amount one receives when approved is about $1100 a month, and then you get Medicare for a very low price along with it, if you need the medical coverage.

I don't work at all right now, but I could make up to about $800 a month and still receive SSI benefits for a limited amount of time (the 'Back to Work' program). Also, you do get a lump sum of back pay monies when you are approved. This amount can be significant, although if you have a lawyer - which I highly recommend - they take 25% of that money out to pay him/her.

I agree with Hollie - file as soon as possible, you can always back out if you need to.

Good luck,

Jana

Unfortunately, you probably aren't too young for cataracts or glaucoma. I was 'too young' for heart problems, so they didn't consider it until the very end of my testing, but that's what it was. There are too many cases out there that prove one is 'never too young' to get what are typically consider older person's diseases.

How do you get to the doctor? Do you have a wheelchair? Somehow, there has to be a way to get you some help.

I don't seem to travel very well, but lying back in your passenger seat with your feet up certainly helps. Also, make sure you stay hydrated, nibble on salty foods and Gatorade (or NUUN, G2, Elixir by Camelbak, are other good, lighter options), and stop at the rest areas to stretch - and use the facilities! I have to plan that the day after we arrive I have a 'rest day', too. I think driving is easier than flying, though, as long as you have some else as the designated driver.

Good luck,

Jana

Hi Suzy,

I've missed you, and I'm so happy that you took a moment to check in. You certainly have had quite the stress lately, and yet you're still doing well - hurrah!

My condolences on the loss of your grandmother. I'm glad that you have family around for extra support. Please take good care of yourself during this time, and may you continue to feel so good.

My best,

Jana

Unfortunately, this is indeed sometimes the case. I've head people tell stories of doctors who will change their minds on meds due to factors such as children in the home, or a situation where a patient lives alone...They may attempt to try a little riskier treatments with a patient that has somebody in the home with them and is better able to handle an unfortunate situation if it occurs. It certainly isn't right, be any means....

I know exactly what you mean about having the flu 24/7! I feel that way a lot...

good luck,

jana