skyblu

I have worked myself up to one hour of guaranteed exercise a week (Pilates) because I pay for it (literally $$$$ and figuratively!) I can't say that it is helping with anything other than my clothes fitting better. I feel like a train wreck for the rest of that day and it takes 3-4 days to recover after. However, on that one day, I am as strong as I used to be, often outperforming "normal," fit partners who have done Pilates multiple times a week for many years. If I attempt to do anything else that week I am almost incapacitated. Once I recover, I occasionally try to walk a mile to bring up my cardio and total exercise time for the week. I'll get 10-15 minutes into it and my feet will go numb, by the end of 20 minutes my hands are numb as well. I have a hard time with house/yard work. Like walking, I can get 20 minutes and then I am too symptomatic to continue. It is so frustrating! There are several exercise/POTS studies actively recruiting at Vanderbilt, so maybe some new treatments will come out of them in the next few years.

BTW- I'm not the tall, skinny type either. I tend to be the medium, stocky type. It would be easy for me to gain weight if I didn't watch my diet closely.

Interesting.... but I don't need a watch when I take a walk..my body always seems to know when I've walked for 20 minutes. For some reason I'm fine until around 18 minutes then the fatigue hits me hard. I've never been able to get an answer as to why I have such bad exercise intolerance. Before was sick I used to walk for hours and bike ride for miles. I'm thin but have very little muscle tone.

It is all relative. For example... I tried to get pregnant starting in my late 20's to late 30's. I went through infertility treatments but they were unsuccessful. At the time I thought it was the worst thing...it sort of took over my life for a while. Now looking back I see it wasn't all that bad. Not to minimize anyone's experience with infertility but at least I had my health back then which I now realize is the most important thing. Going through infertility paled in comparison to living with a chronic illness. And the thing is....I know a lot people have it worse than us. There are lots of worse things than a chronic illness.

Erika...I can sort of relate and the only thing I can come up with..at least with my mom is that she's in denial. She can't deal with the fact that I have a chronic debilitating illness so she minimizes it and never wants to have an honest conversation about how I'm feeling. I've been sick for over 10 years but we still "pretend" I'm going to turn around and get better any day now. In fairness she does help us financially but emotionally it's just too difficult for her. Which often leaves me feeling frustrated ,angry and hurt. And even ashamed about how limited I am.

Is it possible your mother is the same way and just can't face the fact that you're sick and does everything in her power to pretend you're not? But doesn't see what she's doing and how it affects you..

Maxine...perimenopause can be causing some of your problems. It's possible you're having hot flashes which can increase adrenaline and mess with your HR. And make you feel miserable. Your hormones are fluctuating right now and it can make you feel awful. I used to get so sick when I got bad hot flashes. Some were OK but others knocked me out and left me feeling sick for hours afterwards.

Also I'd lay off the bacon if I were you and eat other salty foods instead. The nitrates in it can make symptoms worse.

I'm sorry you're having so many problems with the Remeron. Just my 2 cents but you know your body better than anyone. If you're having major side effects after nearly 4 weeks I think you need to consider getting off of it. If the side effects of the med are outweighing the benefits then you need to consider getting off of it. It's up to you whether you continue to take it....not your therapist.

MomtoGiuliana...I meant to ask..were you in Colorado when you experienced symtoms at elevation?

Interesting! I don't think symptoms hit me later...they simply came on immediately and were not relieved until I got to a lower elevation.

I've wondered what it might feel like to acclimate to a high altitude and then go to sea level. I think it takes longer to acclimate to high altitude than to acclimate to low...in that you would lose the benefits pretty quickly.

I think it does take longer to acclimate to a higher elevation. It took me a while to acclimate when I moved to Denver and that was before I got sick. Now... when I go back to LA to visit family and friends I have a lot more energy, less episodes of syncope and less exercise intolerance. I'm never there long enough to see how long it woud take to acclimate. When we return to Denver I usually have a day or two of that good feeling and then I'm back to feeling like crap again.

My husband and I like to go to a lake which is at around 10 or 11,000 ft. I'm fine as long as we don't stay there too long. I think if I were to stay there for more than few hours I'd start to get symptomatic

I've noticed I feel better when my BP is stable when sitting. Doesn't matter if it's high normal or low...as long as it doesn't bounce around up and down. The days I feel the worst is when my BP is erratic.

There are some similiarities for sure. The mechanism is different.

However, high elevation is often harder for POTS patients to tolerate than people without POTS. Although from what I understand it can be hard to impossible to predict who might get elevation sickness...anyone can.

Out of curiousity have any DINET people gone from sea level to say 10,000 ft+ in one day? How did you do? I did once and it was a terrible experience. I was extremely dizzy, heart pounding and fast, headache, exhausted, weak. It was like severe POTS in many ways. I drove from 8,000 to 13,000 once in a day and we had to come down--I had a horrible headache, nausea etc. Everyone else on the trip was fine and all the kids were so disappointed that we didn't stay long enough to see mountain goats...ugh.

I can go to 7,000 ft from sea level and be ok with moderate exercise and good hydration, although I don't feel normal (ie more POTS-y than usual).

I live in Denver and have gone from 5,280 ft to around 12,000 ft in a day. I find the symptoms hit me afterwards.

Before I got sick I used to hike at elevation and had no problems. My goal was to climb every 14'er in Colorado but I was only able to climb one before I got sick.. In fact hiking at elevation was one of the first signs something was wrong. My husband and I did a hike in 1998 and I noticed I was winded and tachy and struggled throughout the hike. But had no clue why. We did a few more hikes and the same thing happened.

I love going to sea level because I always feel really good for the first few days. I'm pretty sure I'd acclimate if I were to move to a lower elevation.

Reductions in cerebral blood perfusion can result in all those symptoms - Id say that it kind of feels like being drunk but without any of the nice feelings.

Exactly...I often feel altered and drugged but not in a good way. Nothing pleasant about it.

Can you explain what reduction in cerebral blood perfusion means? Thanks.

Skyblu-

You KNOW my heart breaks for YOU- The worst part is the every day lack of empathy when you live with a chronic disabling invisible illness.

That being said, he missed by FIFTEEN SECONDS? That's pretty heartbreaking too. He ran t-w-e-n-t-y s-i-x miles in 3 hours, 35 mins and fifteen seconds only to be told that it wasn't good enough!!! Geez. I think he has the right to be disappointed too

Hugs-

Julie

Thanks Julie. Absolutely... he does have a right to be disappointed.. Of course...he can run more marathons and still qualify.

I think she might have meant to say "disappointed". Big difference between being disappointed and being depressed.

I'm just so focusd into thinking how lucky he is to be able run that it's hard to see past it. Like I said in my other post.. there's.something with hearing about physical activity that really does a number on me. I need to work on that. Funny....but if she had said her husband lost his job I would never think "well at least he's able to work".

Sometimes we need perspective too just as much as our friends do.

Yes... I agree

I don't get sick too often but when I do I can never get rid of it. Every flu like illness I've had since I've been on Disability has lasted about 6 weeks. I'm wondering if my immune system was better when I worked and was around more people.

I have noticed my patience fore this kind of thing is closely related to how ill I am feeling..

Thanks so much for your input and replies everyone. I'm just sorry all of you are dealing with the same thing. Erika...I think you just nailed it... I've also noticed how I deal with those kind of comments is definitely related to how I'm feeling. On better days I'm much more patient.

The thing is..I know this particular friend of mine meant no harm. She's just happens to be blessed with good health and can't relate to anyone who's not.. Plus, she's an old friend from highschool and she lives in a another state so she's not around me that often. LOL... last year she asked me where my husband and I liked to ski. I had to gently remind her I wasn't able to ski and why.

I also know my buttons get pushed more with anything that has to do with physical activity. I think it's because I miss that part of my life more than anything.

A friend called a little earlier today to complain about how depressed her 54 year old husband is because he didn't qualify for the Boston Marathon. He missed it by 15 seconds. This was after I told her I wasn't doing well and that my husband has been having major back problems.

I had to bite my tongue and not say to her "well at least he can run. But of course I said nothing. I guess it's all relative. I'd give anything to run a mile. I can barely walk a mile. But at least I can walk.

I took Paxil about 6 weeks after I had surgery in 1995 and passed out a few hours after taking it. . Took it the next day and ended up passing out again which landed me in the ER. My docs kept trying to convince me it wasn't the Paxil which caused me to faint but I knew it was.

Perhaps I took it too soon after having brain surgery. Anyhow..I've been too afraid to try an SSRI again although I know they've helped some of you.

My pcp put me on nortriptyline for pain about a month ago to try and lower the amount of vicodin I'm taking for leg pain and sleep issues. We upped my dose last week and I've been having horrible heartburn. I also started florinef and high salt diet last week, so I can't really tell what the cause is. I'm not liking this at all!

Nortriptyline and all the older anti depressants can do a number on your HR and BP. Not the best meds for folks with dysautonomia.

You can chat on facebook. But I don't think they provide the option to chat with more than one person at a time.

Youre not alone. I don't feel well most of the time. It's usually not so bad that I can't go to the store around the corner or run a few errands. But it's always a struggle. Some days are much better than others although I have very few days where I feel "normal".

I'm glad you're having a good day today.

US President?s Daughters not vaccinated

http://blogs.abcnews.com/politicalpunch/20...n1-vaccine.html

ABC News' Sunlen Miller reports:

The White House announced today that the president?s daughters received the H1N1 vaccine after it became available to Washington, D.C. schoolchildren.

The vaccine was administered last week to Malia, 11, and Sasha, 8, by a White House physician, who applied for and received the vaccine from the D.C. Department of Health, ?using the same process as every other vaccination site in the District,? according to the first lady?s Press Secretary Katie McCormick-Lelyveld.

The president and first lady have not yet received the vaccination. The White House said they will wait until the needs of priority target groups -- young people under 24, pregnant women, and people with underlying conditions -- receive theirs first.

?I suspect that I may come fairly far down the line,? The president told CNN last month. ?We want to get vaccinated. We think it's the right thing to do. We will stand in line like everybody else. And when folks say it's our turn, that's when we'll get it.

On Friday President Obama signed a proclamation declaring H1N1 a national emergency.

All four members of the first family received the seasonal flu shot last week.

-- Sunlen Miller

5'.4" and 98 pounds. I've always been thin but not like this. I've been slowly losing weight over the past 3 years and can't seem to put it back on.

Earthmother, you described my situation perfectly. I prefer to be at home when I'm not feeling well which means I spend much of my time there. I'm usually alone during the day until my husband gets home from work. I've lost contact with old co workers and it's probably for the best because I wouldn't be able to get together or make plans with any of them. I wouldn't say I'm agoraphobic although anxiety does play some a part in it all. Sometimes I have to honestly ask myself if I'm staying home because it feels safe or is it because I truly don't feel well enough to go out.

Most of my close friends and family live in Los Angeles, so much of my contact with people is by phone, email and Facebook. I don't want to post my real name on here so I'll PM those of you on FB with it.

Yes...I'm very senstive to it. I took Robitussin DM a few years ago and got tachy from it. I do fine with regular Robitussin which is basically just Mucinex.

I'm going to add a different take on it so this is just my 2 cents.. I started taking Restoril for sleep in 1995 after having brain surgery. Restoril is a benzo used primarily for sleep. I tried to go off of it in 1998 without success so I was then put on 1.5 mg of Ativan for sleep. Sometimes I'll take 2 mg but never more. Through the years I've also found that .5 mg of Ativan was very helpful when I'd get those "autonomic storms".

Now all of a sudden things have changed. I don't like the way I feel when I take the .5 mg. It actually makes my symptoms worse. And I'm also starting to not like how I feel when I take the 1.5 mg at bed time. I already have low BP and I'm wondering if the Ativan is contributing to that. I'm thinking of going off of it but I know it's going to be very difficult.... even if I slowly taper it.

I wish I had never started taking a benzo every night after my brain surgery. I wish I had only taken it for a week or two until my normal sleep pattern had returned. There's nothing wrong with going on a benzo short term but the longer you stay on it it the harder its' going to be to get off of it should you ever need to.

My vit D levels were 8 when tested the first time. I took Vit D 1,000 - 2,000 units daily for a year & when retested it was only up to 20. I've never consumed dairy products. I think if we could be in the sun for 30 min daily it would help more than anything.

30 min of sunlight a day would be the best thing to increase Vit D levels but unfortunately it's not great for us fair skinned people as far sunburns and skin cancer. I live at a higher elevation so the sun is always stronger which is why I might have been able to get away with the 7 - 10 minutes of sun.

Not sure if I'll need to increase the amount of time in the winter.