turtlefairy5

Thanks for these suggestions, everyone.

Amber

This post makes me so angry. I am a former teacher, and I know from first hand experience how unaccomodating and demanding principals, assistant principals, and human resources over at the district office can be.

I have taught in some pretty bad situations, both from the stand point of the kids I was dealing with and my own health. I have, multiple times, tried to work through the stress, tried to work even when I had a fever, pneumonia, one cold after another, tried to go back to work right after an episode in the emergency room. A former principal had this saying that he thought was cute, "I'd rather have you here on your worst day than a substitute here on their best day."

*grrrrrrr* excuse me while I rant.

Sometimes it seems that "educational leaders" are so busy "putting the children first" that they forget that it is not only beneficial but necessary to take care of the teachers. Because if the teachers are stressed, sick, not supported, they will be doing a very poor job in the classroom.

It made me sick how teachers, including myself, were treated, and it really gets my goat to hear about how you are being treated now.

Your principal won't help you, you're not getting help from your school district; if you can afford it, I think your next move should be to consult a lawyer and take legal action against them.

It really burns me up to hear that your principal is trying to get you to get your doctor to sign something that is, essentially, I total lie. The school is obviously trying to cover their own bum; if they have something documenting that you are not disabled, they can fire you free and clear.

Don't let them do that!

Do you have any disability insurance? Can you go on short term or long term disability?

To respond to Ernie's suggestion: For me, it was nearly impossible to stay in my chair and teach. I taught at a high school, then a middle school. I was constantly having to get up for one reason or another. One expectation is that the teacher will walk about the room and "monitor" the students. If your principal comes in to observe you and sees you on your rear end, they're not going to like it. They want to see you up, on your feet, with plenty of energy and enthusiasm.

Amber

I've had the same sensations of physical (not necessarily emotional) nervousness/anxiety as you. I've read on the boards others mention "adrenaline surges" and similar phenomena, and I realized that what I was feeling was just another part of POTS. Now I don't get as upset when it happens because it's happened so many times and I always eventually feel better, also because I know other people are experiencing the same thing.

There are some funky, funky symptoms that happen to people with POTS. I would talk to your doctor about it if it continues to bother you, but I'm learning more and more not to get overly anxious with all this weird stuff.

hope you feel better,

Amber

Like many of you, I am struggling most right now with the overwhelming fatigue. I'm sure the hot weather is making it worse, but I just wanted to ask everyone to put their two cents in as to what (medications, treatments, vitamins, etc.) seems to help you the most with the fatigue?

Thanks,

Amber

What is Catapres?

Amen, tearose.

This heat is oppressive. The tachycardia is happening even when I'm sitting.

Today, actually the past few days, have been yuck for me.

Where is Autumn?

Amber

firewatcher,

Thanks so much for that info. I've always been an insomniac. If left to my own devices, I would stay up all night and sleep most of the day. I thought it was just part of my depressive/nutty/creative/tortured genius persona. har har. sounds like many others here have lousy mornings as well.

by the way, cool name!

Good luck and thanks for the reminder about this show! I'm going to try and see if my girlfriend can record it.

Again, good luck. I wish you well with it.

If your family still doesn't come around, I hope you can find the strength within yourself not to let it get you down.

Be your own support.

Amber

I have been prescribed several anti-depressants over the years to treat depression and anxiety. Unfortunately, when not used in tandem with an anti-psychotic, they tend to make me walk-around-in-circles anxious and restless, complete with accompanying panic attacks. It may be that I could ween off of the anti-psychotic after moving past the side-effects phase that come with starting anti-depressants, but I've never tried that. The anti-psychotic helps me sleep, and really helps with my OCD/intrusive thoughts. I've recently learned, though, that anti-psychotics can aggravate POTS.

Anyhoot, to answer your question, or, um, not-answer it still, I've tried just about every anti-depressant and have yet to find one that absolutely makes me feel better, less tired, etc. Still searching. When I can afford it, I'm going to try Wellbutrin next.

I'd be interested in what others have to say about this as well. Any recommendations for one over the other?

I suppose there really isn't any magic bullet, as it were.

Amber

I was started on Metoprolol Succinate ER 25mg back in March when I had my second visit to the ER for tachycardia, and cardiologist continued the medicine when I saw him. I wouldn't say that it has been a wonder drug, but I guess it has helped control my heart rate. If I get out in the heat and/or am active, my heart rate will still get up into the 150's.

I guess my own increased understanding, thus lessened anxiety over the tachycardia, rather than any drug, has helped more.

I'd be interested in what others, who've dealt with this longer, would have to say.

Amber

Amen, Melissa. I have the SAME funk-stank-tastic thing going on in my mouth. They come about as another lovely little manifestation of my multi-symptom PMS horrifia every month, also when I chew/bite the inside of my lip, which I do when I'm nervous/anxious/bored/thinking-too-hard. I guess I can expect it from biting my lip, but really, it seems like if I even nibble, there it is the next day.

I'm with you, sister.

Amber

I have crashes of fatigue/malaise throughout the day. I haven't noted that there is a patter; I can't say, "Oh no, it's mid-afternoon (or whatever), and I know that I always feel lousy around this time of day."

Generally, I crash after I have been trying to act normal for too long. In other words, when I try to push myself beyond my physical limitations, or put myself in situations that aggravate my condition, eventually my body lets me know it. For example, when I went camping, even though we didn't go hiking or really do anything other than float around in the water and eat hot dogs, the heat really wiped me out and I found myself in the hot, hot bathroom at the camp bath house (which is not exactly a lovely place to be) with my heart racing and feeling y - to - tha - uck. As another example, today I am feeling really sleepy, lethargic and brain foggish because yesterday I wiped down the inside of my car, took the dogs for a walk a couple times, and made some spaghetti for dinner. Though it really sounds ridiculous to the outsider, I did too much. It is a tricky, tricky thing trying to figure out what your limits are, to conserve your energy when you have it instead of using it all in one burst. The analogy I use is that most people are energizer bunny batteries, and I'm those really, really cheap ones that you find at the dollar store.

I feel really crappy first thing in the morning and have a hard time waking up. That's a given. So I guess I would have to identify waking up in the morning as the one sure-fire time that I know I'm going to feel bad. Other than that, I just feel bad when I try to exhert too much energy, regardless of what time it is.

I will say that sometimes I do seem to get a second wind at the end of the day, which is frustrating because I've spent the whole day feeling lousy and then feel like I have some energy just when I'm supposed to be slowing down and getting ready for bed. grrrrr. maybe we're just meant to be night owl vampires??

I was actually thinking of starting a thread asking whether or not POTS and CFS are directly related, or mutually exclusive. In other words, if you have fatigue from POTS, can you then say that you necessarily have CFS, or does POTS fatigue rule out CFS? They seem to over lap in so many ways. Before I found out that I had something as specific as POTS, I spent a lot of time trying to figure out what was wrong with me, why I was so tired all the time, and read a LOT about CFS. The CFS book mentions POTS, but I'm still confused. Is there a difference between POTS fatigue and CFS?

Amber

Right now I'm having copies of all my med records sent to Voc Rehab and Soc Sec, trying to get some resources going. This morning I stopped by Voc Rehab to drop off my resume. My caseworker opened my file to check and see which doctors have sent records, and to insert my resume. As she was flipping through, I took a peek at the records she has so far; my psychiatrist was the first to respond (he's a very adament record keeper, I bet he was tickled pink to actually share them with someone, ha ha), and his notes from our visits made me sound like a nut! I mean, I know he's a psychiatrist, and I know I have some mental issues going on, but please! ack! This is the same way I felt reading over my records after I was in the psychiatric hospital (major mental breakdown in '03).

I hate it when psychiatrists put things that you say to them in quotations; for some reason that automatically makes you sound stupid/crazy. For example,

Pt complains that she is "upset" and needs to take "extra" Ativan after she speaks with her father on the phone.

see what I mean?

Also, I didn't like how my voc rehab caseworker, seeing the terms "depression" and "PTSD," seemed to quickly decide that those are my disabilities. Those are part of my disability, yes, but not all of it, and not even the main part (main problem right now is the fatigue caused by POTS). Still waiting on the cardiologist to send in his records.

Anyhoot, I very much relate to the experience that many doctors seem to have superiority complexi when dealing with their patients.

harumph.

Amber

I would agree with tearose that calming self talk can really help. I was having an episode recently on a camping trip; even sitting down, my heart rate was up around 115, so I just did my best to remind myself that this has happened before, and that I eventually felt better. I just remind myself that this is just another episode, and that I have survived every episode so far. I remind myself that this is POTS, and that it stinks, but that it's not a heart attack. I remind myself of the people on this board who cope with it, and that encourages me. I see the episode as a reminder to take better care of myself (drink more fluids, stay out of the heat, etc.)

Also, I second what Sara said about "crappy" chick books and comedy. Read something fluffy, something to entertain you and make you laugh. And that's from a former English teacher! ha! Just distract yourself from it.

I know that when I've been suffering with a real bad episode of the brain cooties, dealing with depression and/or anxiety, I have to escape into something that's fluff. That's okay.

It's even okay to totally disconnect your brain and just plug into the tv. Do whatever you have to do to get through it! We're here for you!

I hope things get better.

Amber

Congratulations! Sorry it took so long, but that's great! I hope that this will offer you some relief and peace of mind. We need all the help we can get.

I applied for SSD/SSI just yesterday; I hope that it doesn't take that long, and I hope that I'm approved!

It's encouraging to hear that POTS really is considered a valid medical disability.

Amber

I think anytime you have an added stressor in your life, such as a life-altering health problem, you can become more easily provoked/on edge/snappy/etc. I think that that would be expected. Somewhere there's a list of stressors, it includes things like divorce and moving, and it ranks the top 10 stressors. I'm pretty sure that having a diagnosis of a health problem and dealing with that problem has got to rank way up there with the list of top extraordinary life stressors.

Be patient and gentle with yourself - this POTS stuff is a difficult thing to deal with. very aggravating, from every aspect, physical/social/etc.

If you think it (your emotions) is something more, it might be worth it to mention it to your doctor and see if it might warrant a referral to a therapist/psychologist/psychiatrist/etc.

I had depression/anxiety/etc. issues before the POTS, and the POTS definitly contributes to my mood/emotions/nuttiness, ie, makes me more weepy/nutty/easily frustrated.

Also, there's the whole brain fog issue.

My experience has been much like jump's in that if I'm tired, I'm easier to rattle; I cry, I get angry, etc. It has always been this way for me, so the POTS contributes in that I'm more easily tired, therefore more easily "emotional."

I should add that, like a couple others, I have always been, generally, a more emotional person, and have suffered from depression and anxiety disorders for years, so....

does the POTS make it worse? yes, in that, if you take a emotional/depressed/anxious person, and lay a significant health problem on top of that, well...

it ain't fun.

Thank you for your replies! It's good to know that I'm on the right track...

Amber

yes! sweet validation! ya'll have all this crap too! I'm not just a walking anxiety disorder!

Here are mine, which I've put into a neat little handy-dandy MicrosoftWord document, updated regularly and ready to disperse to my doctors.

- tachycardia upon standing/palpitations throughout the day

- episodes of extreme fatigue, weakness, trembling

- gastrointestinal problems - nausea, stomach pain and fullness, bloating, diarrhea, constipation

- insomnia - trouble falling asleep and staying asleep, waking up repeatedly throughout the night

- muscle/joint pain - severe lower back pain, knee pain, sometimes neck and upper back pain

- tinnitus, pulsing sound and sensation in left ear, sometimes a high-pitched ringing or beep

- sensitivity to smells, cleaners, perfumes and colognes - causes nausea, headache, anxiety and fatigue

- temperature deregulation, sensitivity to hot or cold temperatures

- severe pre-menstrual symptoms- swollen, sore breast tissue, lower back pain, worsened fatigue, low-grade fever, cramps, headache, food cravings, increased anxiety, irritability, hypomania-like symptoms

- anxiety, depression, sensitivity to emotional stress and light/sound, panic attacks

- difficulty concentrating, short term memory difficulty, word-finding difficulty in casual conversation

Amber

Just to share a specific experience...

My dad is crazy. We've never had a good relationship because he was abusive toward my mom, so my mom took me and left as soon as she could.

Lately, though, he has been helping me financially, which I really don't like. It makes me so anxious/uncomfortable asking him for money. I want to be independent, but I'm trying to consider this back pay for missed child support payments.

Anyhoot, he's getting low on cash and really high on the point of me getting back to work, getting "back on my feet," (ironic, that phrase, right?) and, mainly, not reliant on him anymore. He is clueless as to the nature of this illness and the impact that it has on my life. He feels the same way about my anxiety and depression, which I have suffered for years.

He makes ignorant statements like "It's probably takin' all them medicines that's the problem" and, just the other day, this gem: "Well, you know, sometimes you have to stand even when you're, you know, sitting."

??? I have no idea what that one means. Was it a metaphor? huh? what? is he trying to inspire me? I don't know.

He tries to be supportive the best way he can, but he just doesn't understand. He doesn't get that I am pretty much out-of-commission, and I don't know how, like many of you, to get him to get it.

I know that he's struggling with money, too, but when he questions my medication, deciding which ones are important enough for him to pay for, well, that just makes me want to scream.

So, I still stick to the advice I gave in my first post for dealing with friends and family in general, but I just wanted to share my struggle as well.

Thanks for the space to vent,

Amber

Inspired by hearing "I hope you feel better" today.

Warning: This is snarky.

I don't have a cold. When I feel okay one minute, and not-okay the next, it's not because I'm "coming down with something." I am permenantly down-with-something, called POTS, a condition that only lets me live a fraction of the life that I used to, and an even smaller fraction of the life that I had planned for myself.

In fact, that's a funny thing, plans. Because not only to I have to face losing larger plans for my future, like having an active, energetic, vibrant life, maybe even taking up an extreme sport, but I also, many times, have to give up plans for my weekend, like, say, going to a movie. That's frustrating!

Speaking of frustrating, I'm very frustrated trying to manage my own illness, at the same time trying to manage how I come across to people, not wanting to appear lazy or dull. I'm frustrated trying to put my strange symptoms into words so that others truly get it.

But I'm doing the best I can, and I know you are too.

By the way, thanks. I hope I feel better too.

The result from my holter monitor was disappointing in that it was uneventful. The doctor simply told me, via his nurse over the phone, to continue taking my beta blocker. I was expecting/hoping for the cardiologist to call me in, go over the results, and give me a thorough explanation as to how I could improve my symptoms. No such thing happened.

Hi there. I relate to a lot of what you said in your post. I used to teach! I missed a lot of days, too. I ended up resigning because I felt that I was going to end up getting fired because I wasn't able to perform as was expected from a teacher, or even make it in to work more than three days in a row. I went through a long period of time before I came to a diagnosis when I felt like I was just lazy, incompetent, etc. I was down on myself a LOT, telling myself in my head that I was just weak, that I was a pain to be around and that nobody would ever want to be my friend or (continue) dating me because I didn't like to go out, I wasn't fun, energetic, upbeat, full of life, etc. I asked myself impossible questions. Why can't I just handle things the way other people do? Why do I let the stress get to me? Why do I keep getting sick? Why am I so weak?

I've learned that the most important thing to do is to treat yourself with as much kindness, respect, forgiveness and love that you can possibly muster, and other people will hopefully treat you the same. Easier said than done, I know. Many of us have learned to take a back seat to others, and not to bother anyone with our disability and limitations. But sometimes you gotta take up for yourself. Not in a mean way, or from a place of anger, but with the expectation that those who love us want to take care of us and want us to speak up to take care of ourselves. Why shouldn't I ask my husband to go to the refrigerator and fix me a sandwich? He loves me! Thanks, sweetie! - Be positive about it.

Remind yourself often of your talents, your abilities, your strengths. Since your body is weak/disabled, spend as much time as you possibly can tapping into your SPIRIT, and engaging with your true honest soul. I hope I'm not stepping on your spiritual/religions/non-religious toes with that one, but it's helped me.

I think giving out information has been a great thing for you to do. Now all you can do is let your friends/family/etc. process that information, accept it, or not accept it, and make whatever decisions about you or the way that they want to treat you that they can. Your job is to continue to treat yourself with respect and love, not matter what they do/say.

One of my favorite quotes is, "No one can make you feel inferior without your consent." And darn it I can't remember who said it, but there you go.

Good luck,

Amber

If someone could point me to a prior discussion on the topic of job seeking/interviewing when you are diagnosed with POTS, or if we could start a new discussion here, I need some advice.

When my symptoms first started back in February, it quickly became apparent to me that I was no longer going to be able to continue teaching, and I resigned in March.

Now, I need a job.

But I'm not looking forward to the limitations, or the interviews where I have to try to explain my limitations.

Does anyone know of any employment agencies or websites that list jobs from businesses that take on disabled workers?

I've started the process at my local vocational rehabilitation department, but I just wanted to know how any of you have handled the job search.

Thanks,

Amber

Thanks for the replies. I'm learning that fatigue is just part and parcel of the whole thing, though sometimes the meds contribute.

As for me, I've started taking my low dose of Metoprolol at night, and I've started taking my low dose of Zoloft (25mg) at night as well.

I can't afford to see my psychiatrist for now, so that's another reason why I've decreased the dose, and why I haven't yet switched to Wellbutrin as he ordered the last time I was there. (Can't afford psychiatrist, can't afford psych meds either! wark! )

For now, I'm feeling okay, just learning how to cope with this tiresome (in more ways than one) disability.

Thanks again,

Amber