Hi!

[rachelsmom2005]

New here and happy to say that I finally know what in the world is happening to my body. I've been trying to get my meds adjusted so that I have more good days than bad. I've had problems with every symptom of POTS there is. Besides being so tired some days to the point of not being functional, I think the night sweats where I wake up drenched, wrapped up in all of my blankets and freezing is one of the most irritating symptoms. However, I've been finding that sleeping with a heating pad has helped me - although I'm still testing this out.

I'm 34, married, a mother of a 7 yr old daughter and work fulltime in a demanding position that requires me to travel (I've had this job a little over 7 months). I didn't know until last week that I have POTS. I've known for a little over a year that I have heart problems (mvp & 2 tachycardia arrythmias (sp)) and very low blood pressure issues (lots of near syncope episodes). I was trying to train to run 5K's when my body decided to start passing out on me left and right. I've had problems with near syncope for years when standing up. I just blew it off and chalked it up to my body doing strange and stupid things again. Stress test heart rate = 218 in under 6 minutes. My workouts were typically 30 to 50 minutes.

The doctors said (with a horrified look on their faces) I'm lucky I hadn't inadvertantly killed myself or given myself a stroke.

Sorry, my thoughts are a little scattered here... In the last several months I've really been worried about losing my job. I'm also concerned about how this is effecting my daughter. She makes a lot of comments about how I'm too tired to do anything with her or play with her. Last Saturday I spent some extra time with her only to end up spending another entire Sunday in bed (getting up and moving around during these bad days - I constantly feel like I'm going to pass out with every turn of my head). I've spent way too many evenings and weekends in bed with no energy. Sometimes I feel like a mere shadow of who I used to be.

I'm a little nervous about my future. We've had to keep increasing meds and switching meds just about every month. They seem to do the trick for a couple of weeks, then the near syncope and extreme fatigue returns. (I'm on Midodrine and a different beta blocker (4th one?) now. I didn't like Florinef - made me gain weight (water retention I guess). I think this may be hereditary - my grandma was constantly fainting and had all sorts of problems with low blood pressure. As far as I know she was never dx with POTS.

The whole thing is a little ironic. Back in the late 90's I thought I was on the path to MS. Now I have a name that I can assign to my troubles. It's weird how people don't think you're sick until your doctor says, "You have "THIS"." Then all of the sudden it's not just in your head any more. (Grrrr!)

I have to say that I am concerned about my future. It looks like financial help (disability) is harder to get than the hope diamond. Over the last several years I've missed a ton of work. Over the last few years I've felt like I'm getting more and more tired and worn down. I don't feel depressed. I WANT to have the energy to get out and do the fun stuff I used to do. But I have a hard time just getting out of bed to get to work. I love being on a high-salt diet since I'm a salt-o-holic! Giving up cafeine is not working out so well for me though. When I feel tired it's the first thing I reach for! I really want my energy back. I don't like spending at least one weekend day, if not both, in bed and completely exhausted.

Anyway, I feel like I'm in good company here with people who actually understand what it's like to feel this way. I'd love to hear from you!

[BuddyLeesWife]

Welcome from a kinda-sorta member of the group. My husband has NCS so I frequent this forum to increase my own understanding of what he might be experiencing. I was trying to find something to help you explain your limitations to your daughter and the best idea I came up with is using the stories from younger kids with dysautonomia on the dynakids website ( www.dynakids.org ). I frequently use the Dysautonomia for Dummies article from the August 2001 newsletter to explain to friends and family members but even that is too complicated for a 7 year old. Maybe the words of those closer to her age will help her understand what you are going through. Just a thought.

[blackwolf]

Welcome, first things first.

Second, check out the "what helps" section on the home page. It covers stuff like compressio hose, fluid intake, salt, eating several small meals, ... Tons of good ideas.

Third, if the midodrine/proamatine isn't helping, there is research coming out of the Mayo Clinic in MN that has a new drug to try, pyridostigmine. Check out the Winter 2005 news letter for more info.

I too am a mother of a 7 yr. old(girl) and an 11 yr. old son. They have grown up knowing me with POTS so I guess I would suggest checking Dynakids, the web site for kids, to see if they have suggestions on how to talk to your kids. If nothing else, just keep it simple and slow, a little info at a time and don't overwhelm.

Again, welcome

Blackwolf

PS If you have some special questions, you can try to run a "search" and see if we have already talked about it. And don't worry about repeating stuff, we do it too.

[Gena]

Hi and welcome! Someone had a good idea that they suggested on a similar post not too long ago...I wish I could remember who posted it, because I thought it was a very good suggestion...In essence they suggested that when you feel potsy and have to be in bed or on the couch to invite your child to stay in bed with you and read together or watch a children's movie or play board games, etc. (In other words make it a special time you can spend together with whatever energy you can muster!) Even though you may not be able to play outside or run around, at least you can still show your child love and attention.

P.S. Since you're a self-proclaimed salt-oholic , you may want to ensure that you're using sea salt whenever you can, as it has an array of trace minerals that are good for you. (unlike man-made table salt, which can deplete your body of minerals.) Also, a great substitute for caffienated coffee is Teecino. It is all natural and tastes great. It comes in different flavors like Java and Hazlenut and it's actually good for you.

As far as your energy level goes, you may want reduce refined sugars and carbs (if you haven't already), which cause big swings in blood sugar and energy levels. Eating a quality protein bar might give you some added energy as well.

Best wishes,

Gena

[briarrose]

Welcome

I hear you on the doctor B.S. They always tell you that all the tests were negative, so no matter what your feeling, you're fine. We all that not to be true!

Ok, I've dealt with being freezing cold since I was a toddler. I cheat and take the heating pad to bed with me and it works great, except that it only heats a small fraction of your body. I finally broke down and bought an electric blanket and am happy with a great nights sleep. In your case I probably wouldn't recommend it since you sweat all night.

Travelling is bad for POTS, have you thought about doing something different?

The real reason I replied to this discussion is because of your daughter. I am a single mother of 6 children and I have to work full time no matter how close to death I'm feeling. If I don't work, I can't keep my kids. Anyway, the kids have had to do a little changing in their expectations. It's taken them a few years but they have been champs about it. They know that I'm sick and they are more protective of my sleep times than I am now. My daughter lectures me if I don't come home and go to bed. Their happy if I sit on the couch and was a show with them now and again, my girls like jeopardy. I understand that my kids are a little older now but they were in elementary school when I first started getting really ill.

Your daughter will adjust as long as you don't try to protect her from your illness. She needs to understand how fragile your condition can be at times. Especially so it doesn't scare her if you get in a real crisis situation.

One thing I have found with this illness is that just when you think you've seen it all or experienced everything, something else is possible.

I went through about 3 years of complete exhaustion where I didn't want to get out of bed. I would have been happy sleeping 24/7/365

Anyway, I'm rambling.....it's past my bedtime. Goodnight.

[rachelsmom2005]

Thank you all for welcoming me!

Yes, I'm on the search for a different job that doesn't require travel. Not only can my body not take it as well as I had hoped, but neither can my daughter.

Unfortunately, my "dream job" has turned out to be not so dreamy... I wish I could do it. I like what I do. Anyway, the search goes on but the jobs here are terrible, mostly entry level and pay wages that I used to make 10+ years ago.

I've looked at a few options with going back to school or different jobs. For example, dental hygienists can get $25+ per hour. However, I don't think anyone would want me working on their teeth when I'm having hand tremors... The wheels in my head have been spinning, but coming up with nothing.

On my so/so and bad days I wish I didn't have to work at all. And every time I can't make it into the office due to migraines, IBS (accidents), any cold or flu, or mentally non-functional I worry about losing my job. I'd rather leave on my own terms and with an income that will continue when I leave. And we all know that people don't understand why we seem to be sick all of the time. I know I've felt like I've been labeled lazy and a hypochondriac in the past by co-workers. It pieves me...

To the mom with 6 kids, a job and POTS... I bow to you oh, Goddess of Wonder and Amazement! Because I wonder how you do it all! I am stunned and speachless! I have one daughter, one husband, one dog, one cat and a job and I know that I can't keep up with much of anything.

My daughter knows that I have heart problems. She doesn't understand though why I can't just take a Tylenol and get better or why it's lasting so long. And I worry about her getting dysautonomia/POTS. I haven't let her know anything about THAT being a possibility.

I have to run for now. Thanks everyone!

[Jean123]

Welcome!

I'm an newbie as well. My son was recently diagnosed with POTS and this site has been a lifesaver. I understand your concern about your job. I'm having to take intermitent family medical leave in order to keep my job and yet take care of my son. You might see about doing the same if you have had to take off days due to your illness and doctor appointments. The intermittent FMLA protects your job. It allows you to take off when you need to without pay however, also allows you to work when you can. My family has nearly hit a financial crisis over all of this. We keep praying that God is going to open some doors for us soon.

I work with children on a daily basis. I think the most important thing to them is knowing that someone will always take care of their needs and that you are not going to die from POTS. My son was playing on a basketball team in December and by January he was placed in a wheelchair unable to do much of anything. Sitting even makes him extremly fatigued and dizzy. My 9 year old daughter wasn't concerned for him at first. She wanted to make sure that our time together wouldn't be messed up and that her friends could still come over. Now, she is more concerned that he may never walk again. We have to constantly reassure her.

I like the idea of inviting her to your bed to play and spend quality time together. When you do feel up to doing things with her make sure that it is done in small quantities so that you can reserve some energy for later. Don't overdo. Hopefully your husband and your daughter can have some quality time out together to when you are feeling at your worst. That will make her feel special without worrying her about your health. You can act as if it was planned all along and then sleep while they are out.

I don't know if anything I said will help. I do know that you are in my prayers and that I wish you the best. Good luck!

Lynna