potsgirl

I thought on the TTT that your BP should go up, and your pulse? My blood pressure drops about 30-40 points and my pulse goes up by 60-70 points when I stand (and during the TTT), but that's not POTS. I've been told I have severe orthostatic hypotension, another form of dysautonomia. Perhaps that is what you have.....

Jana

Hi Broken Shell & ND~

I know that you have to have worked for a certain amount of time to qualify for federal disability. Also, the income you have previously earned (essentially the social security you have paid out of your checks) determine how much you would receive each month. NorthernDarlene, are you married? It didn't really sound like it in your message, but if you are, you need to talk to a social security counselor or go online to the website Broken Shell gave you to check it out. That's the only way to determine YOUR benefits...

Again, GOOD LUCK & let me know if I can help you out more. I've been through the process.

Jana

Melissa & NorthernDarlene~

Please take a minute to look up Federal Disability on the government's website. It lists all of the diseases that qualify and the process in detail. That's the best way to figure out your particular situation. But, you can't be working and apply for disability....Let me know if you have further questions.

take care,

jana

Hi,

First of all, let me say that I'm so sorry that you're in this position after all of your hard work. I went back to school later in life, and only got the chance to work in my chosen field for 4 years before I became too sick to work. Luckily, I worked for the state, and after only being in that position for a year, I qualified for long-term disability. It took 9 months to get, but I finally got it. As soon as I knew I could no longer work, I applied for federal disability. They usually turn you down twice, and then you end up going to court. My court date is in late June, and I have a lawyer presenting my case. Unfortunately, this process has taken almost 2 years because the federal courts are so far behind.

I would assume you could qualify for state or federal health care, and perhaps some emergency cash, depending on your situation. To get federal disability, you must be totally unable to work and not work any hours until your case is decided. AFTER you get disability, they have a program where you can work a limited number of hours. Sorry I can't be more helpful, but check out your social services agencies and get as much help as you qualify for. Also, if you want to try to go for fed dis, get the papers in now!

Good luck and keep fighting,

Jana

Rene,

I'm sorry I can't give you an answer on the beta-blockers. I have never been able to take them because my BP is dangerously low already. I do know about switching meds though, and the more slowly you make the changes, the least amount of suffering you should go through. I'm trying to increase one of my drugs right now and decrease the other, and it is a slow, painful process. I'm so sick of meds!

My message for you is to make sure you talk to someone before making any radical changes, and I'm so sorry that you're suffering through one more thing. I'm wishing you peace and keeping you in my prayers. Hang in there, girl.

Big Hugs,

Jana

Sorry I can't give you a reason for the salt making you feel better, except to say that people with POTS are usually told to increase their salt use dramatically. It sounds like perhaps you were really low on sodium, and now you're eating enough to make your body run more smoothly? It's kind of an anomaly that both POTS people with higher BPs and those who have very low BPs that drop significantly when standing both benefit from increased salt use. It's an excellent question...

I think that's a good question. From what I've read, it seems like the younger one is when they acquire dysautonomia, the better their chances for recovery. I wasn't diagnosed until I was 45, although I think I had it about 2 years previously after I moved to Arizona and had a virus. I've been sick ever since...Makes me wonder if I'd have had heart disease and dysautonomia (both virally caused, or so they say) if I had never moved here, or if they symptoms might improve if I moved back to Iowa...

Any other thoughts about geographic location/youth?

jana

You're certainly welcome, Thankful. I hope that it gives all of us an opportunity to think about our bone loss, and how much that could affect our quality of life - as if we don't have enough to deal with already!

Cheers,

Jana

BellaMia~

I just want to comment on the strength that you and others on the site display when you are facing this disease and living alone. I am so lucky that I have a boyfriend who is very understanding and supportive. If I'm too sick to get groceries or go to a doctor's appointment, he's there for me. I live a long way from my mother and my main group of friends I grew up with, and miss that support. I struggle almost daily with moving back to Iowa from Tucson to be around more support. I hate to put everything on one person. It's not fair and very hard on a relationship.

Do you have a good circle of support? Any services where someone could come in and help you get groceries, run errands, take you to the doctor? You are always so sweet and supportive on this site, and I hope you're finding support near you. Of course, we're all here for you, too!

Ciao~

Jana

Hi Viviana,

I'm sorry that you're having these nasty episodes, and that your doctor doesn't seem concerned with your having 2-3 spells when you're still laying on the floor! In one of my posts, I write about low respiration rates, and I think there are several of us who have problems with that (dyspnea). In fact, my sleep is so fractured and my boyfriend always tells me it seems like I stop breathing at night that I'm going to have a sleep apnea study done. Have you tried looking at the problem partially through breathing difficulties? They can do a blood test to check for oxygenation, pH levels, etc, in your body. Regular respiration is 10-20 breaths / minute. Mine is 5 or 6.

I also think that masumeh's entry is interesting - your spells almost do sound like a seizure...I hope you figure this out and have more peace.

Ciao~

Jana

I'm a fainter, too, but wow...my episodes aren't nearly as scary as yours sound. I tend to feel it coming, just for a split second, and then I'm down. I'm only usually out for a minute or two, and then can slowly get myself up in stages. Then I need to sit and rest for awhile. I don't cry, and I never pass out again when I'm on the floor - what did the hospital say about that?! Is that even a faint? It sounds like you just keep losing consciousness, which seems worrisome to me. I also have 'falls' where sometimes I feel it coming, but other times I don't, and I just end up on the floor.

All of these things are scary, and I worry about passing out in public - which I've already done. What do you do about that problem? Wishing you well...

Cheers,

Jana

Suzy~

I've been wondering where you've been. I'm so happy that you're feeling better and able to do so many things! Way to go! Are you still going to come down to Phoenix/Tucson to see the doc at Mayo or visit family in Tucson? I would still like all of us to get together and talk. Shoot me an email and we'll talk.

Cheers,

Jana

Morgan,

Thanks for your input. I think I will try to have the test done the next time I'm in the doctor's office. It seems better now, so perhaps my drug changes were causing it.

Cheers,

Jana

KansasGirl,

While I don't have any children at home, I certainly remember those nights. I'm also one who needs about 9 hours of sleep a night, along with a nap, so I can certainly commiserate. If I don't get the right amount of sleep, my symptoms flare and I feel horrible. Is there any way you can sneak a nap in during the day? Sleep when she does? Also, a good babysitter or a playdate elsewhere can do wonders!

Good luck, sweetie, and take care!

Jana

Hello All~

I recently read a study that pointed out how important balancing our potassium and salt levels are in regulating our heart, kidney and liver function (among other factors), and especially our bone mass. I have had osteopenia for several years already, so this worried me. I've been told to take in huge amounts of salt, but in doing so, your kidneys excrete more calcium, thereby decreasing your bone mass. For women like me, in my 40s and too thin as it is, with low bone mass already, I wonder how much this is affecting my bones.

Anyone else heard of this and how we can deal appropriately with getting enough salt without harming our bones? Most people take in way too much salt and not nearly enough potassium. For those of you who tend to be thin, are in your late twenties and up - especially any woman in their 40s and 50s - I would think about getting a bone mass scan for borderline purposes (a DEXA scan).

Has anyone else dealt with this? Thoughts?

Ciao~

Jana

How in the world do you function on that amount of sleep? I usually get about 8-9 fragmented hours, and I'm still exhausted. I think I need to test for sleep apnea. Were you ever tested for that?

Jana

i do think you should see your doctor about it. perhaps they can do a stress test to figure out why that's happening. let us know what happens.

take good care,

jana

Sophia~

I am extremely fatigued in the morning, am more energetic in the afternoon (if you can call it that), and then do the same thing you do...Start heading downhill again around 5:00 pm. I don't even try to make plans to go out after 4:00 anymore. I'm in bed by 7 or 7:30, asleep by no later than 8:30. What time do you go to sleep? I'm usually up at 6 am. Ugh!

Jana

I can't tolerate Midodrine or Florinef, but I can take Darvocet or Percocet. I only take the Percocet when I have a really bad migraine. Otherwise, Darvocet does the trick if I take it and then lay down in a dark, cool room for a couple of hours (I take one Darvocet N-100 with an Alleve). I get migraines several times a month, too, and can't afford Topamax. Depakote doesn't work for me as a preventative, either. I've tried everything else, so narcotics it is.

Cheers,

Jana

Jennifer,

Have you always been this way or do you associate it with POTS? Thanks for the reply.

Cheers,

Jana

How interesting. Thanks for your input!

Jana

Morgan~

My respiration rate is usually low, but the last three days it has been noticeably slower. I don't feel well, either. Do you have medical training? I wasn't sure if I should have that blood test that measures acidity, oxygen and Co2 or not. What do you think? Thanks again!

Jana

Nauthiz,

As far as I know, that is not a POTS symptom. It sounds like you should go see your PCP about it. Is it still going on? How long does it last?

Take care,

Jana

Hello Everyone~

I've always had pretty low respiration, but these last 3-4 days I'm down to taking 5-7 breaths per minute. Normal is 12-24. Do other people has this problem? I have a call in to my doctor, and I know that the ANS controls functions such as breathing, so I was wondering if anyone else knew anything more about this.

Any insight would be helpful. My arms and legs feel weak, and I'm dizzier than usual (that's pretty dizzy!), and feel like passing out. So it's hard to tell if this is just my dysautonomia or the respiration or both.

Thanks!

Jana

We're going to miss you Ernie! Stay well.

Cheers,

Jana