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Oakley

Back to School w/Dysautonomia

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Hi! I’m a new member. Im going to enter highschool in early September. I was wondering if anyone has any advice for managing symptoms in school while maintaining grades (I’m in a really competitive program)? Luckily I have only fainted twice in the past so I’m not too worried about that. 

My main symptoms: (lots can be attributed to dysautonomia and coexisting conditions)

  • Fatigue with a side of Brain Fog
  • Tachycardia and bloodpooling with poor circulation 
  • Vision loss when standing up (tunnel vision, spots, all that great stuff *rolls eyes*)
  • Mobility
  • Chronic Pain
  • The horrid week long periods (often have to miss a week of school or end up bleeding through pads/clothes)
  • Extreme photosensitivity (painful rashes from direct sun exposure that disappear within the hour, eyesight problems)
  • Nausea and vomiting/reflux no matter what I do or eat 🤢🤮

 

What has been recommended to me:

  • Bring Advil, toothbrush, toothpaste, mouthwash, sunglasses, salt tablets, Rolaids, and a drink everywhere I go (I already do this)
  • Not doing the traditional PE courses (I’m doing swimming and trying out aerial acrobatics)
  • Consider a wheelchair to reduce symptoms and increase mobility (only for long periods of standing/walking or bad days)
  • Get a cane/walker to lean on and stabilize my gait
  • cover my skin (already do this in summer and sunny days)
  • record classes and keep a planner of all class/homework 
  • BC pills to stabilize and help my periods (doctor put me on them last month)

Thanks for taking time to read and maybe reply to this.

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First I have a curiosity question since you haven't listed the coexisting conditions: have you been tested for PCOS? (The random periods is why I ask)

Now my suggestion: not sure where you live but in the US we have IEPs and 504s in the public school system. Make sure you have one and you may have to advocate for yourself. See if you could set it up that if you feel horrible you can lay down somewhere for a little while and recover. 

Recording classes is genius. That sounds amazing. I never would have thought of that. 

Depending on where you live, if public school becomes too much there are home options. Such as homeschool and homebound. 

It sounds like you are preparing yourself very well and you will do well. Good luck and I hope you have a good year. 

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I have not been diagnosed with anything related to PCOS. Mostly just boring stuff like CFS, chronic pain, acid reflux. Doctor kinda just shrugged and put me on the BC. I have an IEP for my anxiety disorder that includes some accommodations for dysautonomia and other illnesses but I’m not confident in my teachers reading or even knowing about it. I used to do homeschool but it didn’t work out well and I had little-no interaction with humans.  

Thanks for the advice. I’ll ask my doctor about PCOS. 

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My warning for PCOS: if they decide to treat it with metformin please be aware you need to check your sugar. It is a blood sugar stabilizer and it is off labeled use for PCOS. When my brother's girlfriend was diagnosed last year they didn't tell her and it turns out she was crashing her sugar. 

Have you had a scope for acid reflux?

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Welcome! Those are some great ideas you have already.

Only couple of things I would think to add are if you don't pass out, there are options in between a cane (which doesn't give you an immediate place to sit) and a wheelchair (which can lead to deconditioning of your legs if it is not really needed). I do have a wheelchair but don't use it full time. I also have a cane seat which is handy to carry and opens out into a seat, and a rollator which gives you more stability when walking and also has a seat. I choose which to use depending on where I am going, how I am feeling and if alone or accompanied. 

Also regarding the BCP, there are regimens which can run for up to about 3 months without a bleed, so if periods are a real problem it would be an advantage to have something like that than one with a withdrawal bleed every 4th week.

Good luck,

B x

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I would get a letter from your doctor stating that you need to be allowed to lie down or retreat to the school nurse when you get bad. Also you should be allowed to get up and move around during classes to prevent the blood pooling. Sitting all day will make that worse and the standing up more difficult. While in class you do not need a Wheel chair and between classes you may need a wheel chair if the school is big. I know that when I used to work with POTS the long hallways robbed me of my ability to concentrate due to the lack of energy and brain fog that might present a problem for you. --- All of your suggestions are great and I would definitely follow all of them. If you can do wihtout the WC that would be great but if walking is a problem I would get one. I have one and use it if I ever have to be out for a long time or where I need to walk a lot ( like in a big store ).  See how it goes first - you may do better than you think! --- Best of luck!

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Communication has been the most important factor in helping my son be successful in high school. At the beginning of the school year last year my son and I requested meetings with the principal, guidance councilor, and his advisory teacher to discuss my son’s medical issues and brainstorm ideas on how the school staff could help my son be successful. We also sent an email to the remaining teachers introducing my son,detailing his medical issues, and outlining accommodations the teachers may need to make in order to help my son. My son maintained good communication with his teachers throughout the school year. His teachers really appreciated the communication and went out of their way to help my son out.

Good luck to you, it sounds like you have some great strategies already in place! 

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I was put on birth control that completely took away my cycle. It helped tremendously. Also, see if your school will let you sit with your feet elevated during class. It will help with the blood pooling. 

I had NCS during high school back well, we won't talk about how long ago, but what saved me was dance classes. The more dance I did, the more it worked the muscles in my legs, the more it helped. It was dumb luck, but my toe shoes saved me. I know you can't do that because you are worse than I was back then, but maybe try yoga or something that strengthens legs, specifically the soleus muscle. Baby steps. 

I went away to college, hung up my toe shoes and my health basically fell off a cliff. I had no idea what was happening or I would have gone back to dance. Now my victories are measured in how many minutes I can walk before I start to lose my vision and faint. I totally get EVERYTHING you are saying. I just had a flashback to my high school days. And no, my parents wouldn't put me on birth control. I had to do it behind their back in college so I was able to walk to class. I know that sounds horrible, but I also know you guys understand why.

Good luck. It sounds like you are already implementing a good plan. You are going to do great!

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The BC is a great option.  My daughter's OB/GYN was concerned not only with her bad periods, but the anxiety she got with them.  She decided it wasn't worth the risk and doesn't make her come off of them for a week.  It has helped her POTS soooo much.  We homeschooled because the girls were too ill to actually go to school and for us it worked well.  Maybe there's a happy medium.  Some classes at school and some at home.  Would that be possible?  Have you ever been looked at for Ehlers Danlos Syndrome or tested for Lupus (the sun rash made me think of that)?  Dysautonomia can be found in both of these.  I hope you do very well in high school, you sound like a very smart and motivated girl! 

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