Tons of questions?!

[annabarone]

Hi everyone,

My name is Anna Barone, I am 23 years old and completing my masters degree in art education. I went to college initially to study art, as a studio art major, and hoped to pursue a carreer as a practicing artist or designer...But as everyone here knows healthcare must come first for us, so becoming an art teacher with the security of a good insurance plan was a good compromise. I'm almost done with my program- in fact, after thirteen more weeks of student teaching I'll be set.

I have POTS syndrome and have experimented with a variety of treatment options over the past six years. My condition is always like a roller coaster- sometimes I'll feel great for a few days or even weeks but I always roll back down. I had a pacemaker initially, but found out it was not the right kind for my condition so I had it removed. Since then, I've pretty much exhausted all of my drug options. I seem to really not respond to drugs as well as others do. Right now I take concerta everyday, just to boost my energy.

Right now, I'm in my second week of student teaching, and already I've missed the majority. When I started teaching, I wondered if the regularity of an elementary schedule might be good for me in comparison to my crazy college schedule. It seems to be worse than anticipated. I'm out of energy, symtomatic: Migraines, Fainting, Palpitations, Dizziness, and just feeling overwhelmed by my surroundings. I'm so frustrated because I truly love what I'm doing- the kids make me smile and laught all day long, and I think I might even be a good teacher- it feels very natural to me. So, you can understand my frustration...I feel as though I'm not working to my fullest potential because of my condition. I feel like my brain is going, going, going, full of ideas and excited and my body is sleeping or barely awake. I know that I have to be willing to accept less from myself or at least to set more practical goals- But, in the meantime, I am overwhelmed and unable to even make it through a full day. I've tried the obvious: tons of sleep, watching my diet, breakfast, lots of snacks, staying hydrated, and sitting whenever possible. NOthing seems to be working. I know that fatigue is something I have to deal with- but to this extent? I have no idea how I can? I'm so tired my hands are shaking, I'm seeing spots, not focussing, not thinking clearly, feeling my fine motor skills decline, and just feeling like the room, the kids, the noise-all of it is closing in on me in this dizzy crazy kind of way.

My questions, after such a lengthy opener, are two fold:

1. I'd really love to know if there are any Teachers who have found ways to adapt in their classrooms? What is your life like? Do you live and breathe for your job because you have no energy for anything else? ARe you able to make it work?

2. I'd love to know any tips or treatment advice anyone can offer in relation to migraines? I'm allergic to imitrex, and relpax which means I'm allergic to alot of the migraine specific drugs...I'm running out of options!

3. I'm interested to hear about the successfulness of pacemakers to treat POTS symtoms that sound similar to mine. I pass out fairly regularly, definitely experience heavy, dizzying palpatations, and almost always feel fatigued. Is there anyone who has gotten a pacer specific to POTS and had positive results?

4. From anyone willing to share, I'd love to hear your advice. I'm 23 and just starting my life. I feel incredibly confused and depressed when I consider my options. My relationships suffer, great guy after great guy seem to disappear as they are introduced to the reality of my life. I feel like if I really try I can work and I can support myself, but then I fear that that's all my life will be about- I'm afraid all of my energy will go into a job and I'll have no time or energy left for anyone else. Finally, I am devastated and constantly consumed by this idea that I may not be able to have kids...No one seems to have any direct answers, which means in the meantime I feel as though I'm in limbo...So I guess that's a big question...I guess if there is anyone who feels like they've handled this, made it through, and found that balance I'd love to hear how and any advice you can offer.

Thank you so much for any advice you can offer,

Anna

[steph37822]

oops

[lalalisa]

Anna,

Hello! I understand many of your frustrations also! I wish I had more answers for you. I am 25 and facing the struggles of being young without any energy and with lots of crazy POTS symptoms.

I commend you for your perseverance as you try to finish student teaching. I can't even imagine what youre going through. I hope you can find a job that will work with your needs.

I graduated college as a voice performance major and now singing makes me dizzy and takes all of my energy. I have been out of work now for 2 years because working outside of the home isn't an option for me right now because I sleep so much.

I tried Provigil for a while (it made me jittery but some people get lots of good energy from it). It is usually precribed for narcolepsy.

I take Zomig for migraines, are you allergic to this?

Please stay encouraged that you will figure something out and I really hope you will improve.

Thanks for your post,

Lisa

[Rachel]

Dear Anna,

I understand what it is like to have all of those symptoms, but not be able to get them to go away. My POTS goes up and down too. It used to be up and down from good to okay. But now it is just up and down from almost okay to bad to very bad. Like you, I never responded well to medication. I was actually off all meds for I think 7 years because there weren't any left for me to even try.

I'm sorry that all the things you have tried aren't working. It is that way with me too. Sometimes diet works. Sometimes it doesn't. Some days there just really isn't anything you can do to feel any better. It may get better in time. Keep hoping.

I don't have many answers to your questions. I'm not a teacher in a classroom, though I have worked with children most of my life. I have taught Sunday School, Childrens Church, and Bible Clubs. Last year I was still able to keep up with doing a Bible Club once a week and Children's Church once or twice a month. But I can't even do those anymore. I don't have the energy to keep up with the children. And because I am so tired I just can't teach with enthusiasm and passion anymore.

I'm sorry that there aren't any easy answers or simple ways to cope. It's hard. It's a day to day struggle. Keep pressing on, but don't push too hard. Learn to listen to your body. If it is telling you that you need to slow down or get extra rest, it is best to listen to it.

Do you have any close friends or family who would be willing and able to help you out? One of the biggest things that has helped me has been the ladies from my church who come over once in a while to clean my house, bring a meal, or visit with me when I'm unable to go out.

Keep us posted on how you're doing.

Hang in there,

Rachel

[Guest tearose]

Hi Anna, welcome! Sorry your having these challenges. You have a lot of good advise above and you seem to be working on improving your treatment plan. You will probably need to try different things to see what will work with your particular kind of dysautonomia.

I would only add that you give compression pantyhose a try and make sure you sit down to teach as much as is possible.

best regards, tearose

[persephone]

Hi Anna,

there's so much I want to say to you ..I'm exactly the same age as you and am so similar to you in so many ways...isn't it strange how many young women in their twenties seem to populate these boards? I worry about exactly the same things as you. I don't know where to begin... I think the best thing I can do right now is tell you to email me, and to offer you these inspiring phrases:

-The trouble is, if you don't risk anything, you risk even more.

(Erica Jong)--isn't that great? I so agree with it!

-Avoiding danger is no safer in the long run than outright exposure.

The fearful are caught as often as the bold. (Helen Keller) and if

anyone knew what they were talking about, it was Helen Keller!

-To LIVE is so startling is leaves little time for anything else

(Emily Dickinson)exactly!

-The thing we call failure is not the falling down, but the staying

down. (Mary Pickford) PARTICULARLY APT!!!!:-D

-Mistakes are part of the duty one pays for a full life (Sophia

Loren)..so I'm prepared to pay my dues...

-You may be disappointed if you fail, but you are doomed if you don't

try. (Beverley Sills)

I'm going AGAINST the advice of everyone and going back to University, even though I'm still pretty plagued with symptoms. I figure that for my own sanity I have to keep going, and not just cave in with this. Keep going with your classes, anna! They might make you tired, but you can adjust! Make sure you take seats between classes, and keep a bottle of water with you whilst teaching..waters a big help to me and to other POTS sufferers in general. My neurologist in London has published a paper about how water can actually RAISE blood pressure...my silly other doctors always told me that drinking lowered bp...shows what they know, huh!

If you want it badly enough, you can do it. just take painkillers when you ache, push your knees together when you feel yourself strating to dip.

i'm sorry this post isn't very logical, but I've got a bad case of the brain fog today!

Please feel free to email me any time...I hope you feel better soon.

[violahen]

Hi:

So sorry to hear about your trouble....I really can relate....My symptoms are very similar....I faint a lot and get extremely fatigued ....I also get horrible migraines.

I am one of the ones who takes provigil....it stimulates the heart and body in general....it definitely helps my fatigue....if I weren't on it I would not be able to function at all....I consider it to be my life support.

I also take MagOX 400...a mega-dose of magnesium which is over the counter....

I also take cerefolin...a prescription but it is more like a supploement....it is derived from folic acid and is supposed to help with brain fog.

I just recently went off of lexapro but have since gone back on....some people take it for depression...it is also helpful to some with POTS symptoms....I stopped it because it didn't seem to help my symptoms....but have since noticed that my migraines are MUCH worse off of it....so now I am taking it again.

Procrit is supposed to be a fantastic med....Dr. Grubb tells me it helps in most cases....the problem is it is VERY expensive.....I would love to try it....if only I could convince my insurance Co. to pay for it....they won't even pay for my provigil!

Good luck and hang in there....we know how you feel. Don't give up hope!

Kristen