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Hello everyone. I was wondering if anyone diagnosed with POTS was able to go back to college.

I was in a graduate program before getting sick. I still have 2 more years to finish it, actually 1.5 of class work and 1/2 of clinical. I took a medical leave when I got sick for a year and want to try to come back this May. I wonder how others manage their symptoms and college. I am especially worried about brain fog and being able to study.

I registered my disability with disability office, but still supposed to meet with program director to discuss my accommodations. When I met with disability representative she said that college can not deny me the accommodations that we came up with. Its basic accommodation like having more time for tests, take breaks from class every 30 minutes, be able to skip more days then allowed if needed. Nothing extraordinary. However, yesterday I received an email from the lady from disability office and she said that they do not want to accomondated me in everything (not sure exactly what) because it will interfere with essential functions of the program. In second summer semester I am supposed to have my first clinical, so maybe they are afraid I will not be able to do it and put in danger patients. But this is why I am recording it so that my clinical instructor and all professors with be aware of my condition. I am starting to worry a lot that they will not accommodate me and will try to push me to leave the program. Can they do it? I have 30000 in loan debt from this program and no job.

When I go under college policies it says that grad school students can take 2 years of leave of absence. But when i called them they said that it does apply ti graduate students which I am, but they not sure about occupational programs (mine is Physical Therapy) and that the department will be able to make that decision.

I feel like I am being discriminated a little by college stuff. First disability person says that my professors have no right to deny my accommodations, but now she spoke to program director and they decided not to accommodate me in those things. Our program director is not a very pleasant person. And when i got sick she was insisting that I leave the program and then reapply. Why would I want to do it. I already finished first year and already paid them 30000 for that year, now she is asking me to reapply when I feel better and take over all of those classes again and pay again.

My anxiety is building up since I saw that email from disability office. I am supposed to meet with program director next week and I am really worried.

Does anyone have any suggestions.

Thank you very much.

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I can run it by my education lawyer but friends have told me that private institutions are not subject to the same laws as public school. Not sure how that shakes out. I'm a nurse and Nursing instructor. Are you in nursing school? You said 'clinical'. But that could be anything. You know your limitations better than anyone. If you can't work through a 6-8hr clinical day, you might want to take more time off. There is little room of substitutes for that.

June

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Hi Gemma,

You may need to get your doctor to write a letter about your medical condition so the college can understand how it will affect your educational needs.

As for Mono, you can have a mild case without running a fever. If you are concerned, have your doctor run the test that checks for a past infection. Tyler's last doctor did that because his older brother had it this last year. I very afraid that Tyler was going to come down with it but instead he got another round of flu. No flu this year. We all got the flu shot early and stayed away from sick people.

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I got sick two months before finishing my degree. Dropped out and came back this year. Doing everything except exams from home and currently late on a few things. It's really tough cos I'm very symptomatic, but the college seems to understand that if I don't finish my degree this way, I won't be able to finish at all.

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I am in Physical Therapy program, doctors degree. I finished the first year and had to stop due to health. Now I am supposed to go back this May and I am very scary. Its one thing to be able to cook and go to stores again and another thing being able to work with patients all day long. My clinical supposed to start in the middle of July and before that I have a short summer semester.

Juneflower if its possible could you please ask your educational lawyer about it. They are fine accommodating me for the classroom part, but when it comes to clinical it is different. I have to be able to meet essential functions of the program, so basically I have to be physically fit for it. I do pass my physical exam, but I will need some accommodations when I have bad days. I wanted to ask them if I can take small breaks to sit or lay down to relieve my symptoms. Also, when I have a really bad flare if I can be excused and not come in. Its so hard because I can have good days where I feel fine and know I can do it, but then a bad day comes and I feel like I am not able to do it. I still have total of 2 years, of which 11 month is clinical education and the rest school work. First year was the hardest so now its supposed to get easier, but I don't know how easier it will be for me. I was thinking of maybe taking another year off, but I don't know if they will allow me to. It does say on website that graduate students can take up to 2 years and if needed may request more, but when I called them they said they not sure about Physical Therapy program because its occupational and I have to check with the department. Ohh, and this is a public school. They receive really good government grands and help for disability students. If you do have a chance please ask him, if I can still be accommodated during clinical. Also if I realize that I still need more time to recover, can they deny my request or they have to give me another year off. In my program we have to take the whole year off, because they program starts only once a year. Thank you.

Looneymom (Rachel), my immunologist did test me for mono and it showed that its not active now but that I was exposed to it before. But who knows when I was exposed. Maybe when they did blood work at the hospital when I had an onset of my POTS symptoms, maybe it was not active back them. They just ran a test that shows if I was exposed, but they never ran the test to see if it was active at that time.

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I meant the schools that are public and K-12 have to follow federal law. Colleges may or may not be different.

I am a nurse and I understand the clinical day. As an RN- I would not have accommodations at work. There is a certain level of physical fitness that is required for the job. I would not be surprised if nursing school clinicals are similar . I know nothing about physical therapy.

I think getting healthy is a priority. It's not easy.

June

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Yes I know its really hard. How are you able to go thru the whole day with your symptoms?

My symptoms got much better then before, but I am afraid it will still be really hard to go thru clinical. Also, I am afraid that the stress will increase the symptoms again.

However, I still really want to go back to school. This is my second degree and I am 32 years old and need to get it finished. My husband is supporting me thru school and I want to finish it and maybe slowly start working. I committed to this school knowing that it will take 3 years in grad school, plus 1.5 years for taking prerequisites. But then I got sick and stayed home for a year and took a leave of absence from school. I got denied for disability, so have no income on my part, plus huge medical bills and also 30000 in school loan debt. And all of this is on my husband. I need to get out of this mess and start either school or work.

Thanks all for support. If you could find the information, i would really appreciate it.

.

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I don't have pots . My daughter does. (See signature). I will ask my lawyer when I talk to her. But the info should be on the disability rights website.

I have chronic migraine and have chronic fatigue still. I don't work more than one day in a row and the day after work is a day of rest.

June

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Ahh, ok. Sorry, I didnt read the signature. My diagnoses is also confusing. Not sure if I definetly have POTS. Doctors say that by the symptoms looks like I do, but two times that I went thru autonomic clinic, once at columbia and once at Vanderbilt are showing negative. My neurologist says people can have POTS and have normal results. This is confusing. I am still going thru the endo testing, because looks like I have some really messed up hormones. My worse symptom is fatigue and hard to stand at times, so I am starting to think maybe it could be chronic fatigue syndrom postviral and not POTS.

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I also noticed that if I wake up early morning and have to do something and get out of the house, I feel better, then If I sleep late. Somedays the more I push myself the better. But of course there could be days where I just cant do anything. And those are the days that I need accommodations for clinical work of school.

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Hi Gemma,

I was diagnosed with POTS when I was an undergraduate, then I went back after a year and finished a mathematics degree. I managed to do this by having an exemption from being full-time, so I could go part-time whenever I needed to, all the way down to 1 class sometimes. I also used incompletes or medical withdrawals on my classes quite a bit. I had accomodations with the disability office for frequent breaks and consideration for missed classes and make up work.

Graduate school has proven to be much harder on me. In order for me to receive funding I needed to have an assistantship while taking classes. That plus a new baby caused my health to deteriorate again and I had to quit graduate school. I am about 5 classes away from a master's degree, so when I am ready I can maybe take 1 class at a time and get there.

Right now I am not in school but I am tutoring students privately in math. When I am up to it, I plan on expanding what I do into a small business. My husband and I could certainly use the income, but I have to be careful not to worsen my health. Since I can choose how many students to have at one time, this hopefully will work out. I hope you can finish school so that you can get to do home care.

Just a question, though, with home care would you be required to lift patients or heavy equipment?

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Hello IceLizard. Thank you so much for information. I have to make sure to bring up incompletes and medical withdrawals and see how they can accomondate that.

Usually we do have to lift patients or at least help them get up. But on this first clinical we are doing more observation and just some slight activity. The next clinical is next summer of 2015, and I hope I feel better by then. I am not as bad anymore, so I want to try and see if I am able to continue. The only problem with my program is that I can not do it part time, we do not have such an option. Its already a preset program and everyone in my clas is taking the same classes.

In home care i can choose, but honestly I dont know yet how it will work. I never did home care. I did my volunteer hours at outpatient clinic and another one at hospital inpatient rehab. The only good thing about homecare is that I can have my own schedule, so I can work part time and this way have more time to relax. My prime symptom now is fatigue. The POTS symptoms now come in flares. Like I could feel normal for couple of weeks and then start feeling bad again.

I am very scared that school stress could flare up my symptoms again. I was even thinking of going on SSRIs while in school, but afraid of memory issues and dont know if it could cause brain fog like xanax did. My doctor insists on Paxil and says it will help, but i am afraid to start it, because think I will have memory problems and thats no good for school. On the other hand if it does help then maybe I will not stress about school as much and be able to minimize my symptoms this way.

I wish I could go part time. I think I can do part time, but full time will be tough and I know it.

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Was any of you ever on SSRIs while in school and did fine. My classmate was on SSRIs when in my program, she took a year off due to medical reasons and then came back and was on different psych meds and I think she failed out, so I am thinking maybe it interferes with cognitive thinking and causes memory problems. Thats whats listed as side effect.

Thanks.

And I hope everyone has great holidays this weekend. It is supposed to be a really nice weather on Easter where I live (PA). This brings up my mood :).

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Hi Gemma,

I was on Cymbalta my entire time through college without impairments in my cognitive function and it improved my autonomic function so I could be upright for longer periods of time. According to dinet,

"Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution."

Cymbalta is in the same class as Venlafaxine and is also considered more helpful for POTS than other SSRIs.

Since I could not increase my dose of Cymbalta without side effects, my doctor also put me on Paxil. Paxil caused me to be very sedated for the first few days or more which I have heard is normal for Paxil. I have tried other SSRIs and they have caused me to feel spacey or not myself at all. They are not really something you want to start during school because there are often side effects that can make school more difficult. Often the side effects vanish after some time, like with the Paxil, but it is an interruption in your normal functioning. It is best to start with the smallest dose, or even the smallest dose divided, if you can cut it up, until you know how it will effect you. You could try them during a break in school if the break is long enough. The side effects start soon after taking the drug and can last near a week, more than a week and they probably are not going to go away for you (not entirely sure about the time frame here, you might want to check with someone else as well). Benefits from SSRIs take time to be felt; my doctor said to give it two months.

I used medical withdrawals to be able to drop classes after the withdraw date without penalty. The problem with this approach is if you withdraw from enough classes during your semester you will be reduced to part-time. I also used normal withdrawals

(I dropped before the deadline) when I found I could not handle full-time. If you are nearly done with a course, but can't be there to finish the work because of health issues, you can take what is called an incomplete. Then you will have a certain amount of extended time to finish the course, take make up exams, and earn a grade. Withdrawals show up as W's on your transcript and do not affect GPA. Incompletes show up as I's until you complete them, at which point you are given a normal grade. You might investigate how all this works at your school and what the deadlines are for dropping classes and taking withdrawals or incompletes.

Yes, the weather is certainly nice here, too :). I am going to enjoy it before it gets to be too hot for me to be outside comfortably.

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Hi icelizard. Thank you for advice. I still have a month untill college starts. I do want to try SSRIs. However, my symptoms are much better and i am afraid to put anything in my body that could worsen my condition.

Can I ask, so Paxil didnt work for you?

Also, does cymbalta start working right away? I heard SSRIs take like almost 4 weeks to start working.

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Thanks for reply Corina. Did you have very nasty side effects in the beginning? My symptoms are much better then before and i feel like i am recovering, knock on the wood. But i still experience some symptoms, like in the morning some brain blood hypo perfusion, sometimes feeling like my body is swaying side to side when I am sitting straight (weird symptom), still some fatigue but can do much more then before. I can live for now with these symptoms, but afraid that when I start school its going to interfere with my studying. Also, brain fog time from time is another symptom. I am wondering if Paxil can help with this. Also, if I have bad side effects from Paxil, how long should I wait for them to go away. I tried lexapro before I even knew I had POTS, and I had horrible side effects. I took it for 9 days and couldn't go on anymore on this med. Please give any advice possible.

Thank you all for your advices.

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Hi Gemma,

Paxil did help some, but did not work as well for me as Cymbalta. Since we suspect possible Mast Cell issues, I am tapering off of the Paxil because it is not a good idea to be on SSRIs with Mast Cell Activation disorder.

Cymbalta is related to Paxil, but is is an SNRI instead of an SSRI, which means it acts on norepinephrine as well as serotonin. It takes about the same amount of time to start working.

Side effects from the Paxil (sedation) took a little less than a week to go away for me.

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Hi icelizard. Is Cymbalta ok for MCAS patients?

My MCAS is still being investigated. Not sure yet if I have it or not. I did react bad to Lexapro before. Did you react bad to Paxil? I think patients with MCAS can not tolarate SSRIs at all.

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Hello Gemma, I think that question would be best addressed by a physician or a pharmacist...or an MCAS specialist.

Just for my own education, I did a scholarly search on the subject of Mast Cell Activation and SSRIs and found no articles indicating a problem of use of SSRI's with MCAS patients.

From personal experience, I believe I've had mast cell problems for years, and adding an SSRI didn't cause a problem for me with my allergic problems

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