Jump to content

Living with POTS


Meghan
 Share

Recommended Posts

Hi, I was recently diagnosed with POTS (in December) after having symptoms of syncope, near fainting, fatigue, tachycardia, ect. for about ten months. I am a freshman in college, just starting my second semester, and I find it really difficult to live with POTS while attending school. I have to nap a lot, go to bed early, ect. while all of my friends are staying up late and going out. I am now taking Proamatine and I find that my energy levels have increased a little bit, and I am able to do more during the day. However, the POTS still significantly affects my life.

I came across this site while researching POTS online. It seems like a wonderful, supportive community. I was wondering if anyone is/has been in a similar situation like this who could offer any support, encouragement, or advice.

I am trying to remain postive and live my life as normally as possible, but I would really appreciate any suggestions or advice you might have for me regarding living with POTS. Thanks :)

~ Meghan :)

Link to comment
Share on other sites

Hi Meghan,

Yea, POTS changes all our lives and it is difficult watching other go about everyday activities with ease, when we have to have that lunchtime nap :) I am also on the proamatine and have been for a year and 1/2 and it has helped with my energy level as well. I was finally diagnosed a couple of years ago and was entering a master program. It does zap you being in school and having POTS and for me trying to work as well. You have to find the happy medium and support for it, I have my friends and family that I can call and have a pity party if I need to :) This forum is great to because it offers great info and connects you with others that know what you are going through. That was a big one for me; my now ex boyfriend and some friends didn't get it and didn't understand why I needed so much rest. You are welcome to email me anytime you want. Good luck with school, it can be done, I just finished my masters in May :)

Link to comment
Share on other sites

Genie,

Thanks so much for the response. Like you said, I have already had to find support from friends and family. I am blessed to have incredibly supportive parents and grandparents who live by me at college and call and check up on me often.

I have also been blessed with a wonderful roommate who cares about my health, is interested to understand what POTS is about, reminds me to take my meds, and totally accomadates my need for a lot of sleep. Sadly though, for the most part my other friends at school don't really understand POTS, nor do they offer much support.

Thanks so much for the encouragement- it's great to hear that you were able to complete school successfully with POTs. Congrats on finishing your masters!

~ Meghan :)

Link to comment
Share on other sites

Meghan,

I'm so glad you found this board- it absolutely is a wonderful place to come for support!! I am also a college student, I was diagnosed at age 19 and have had to make MANY lifestyle changes as a young person =) I am now going part time to school, and will finish my A.S. in May- and plan to go as far as my Master's if not further. It's very hard to keep up with school, and I completely understand your need for sleep. I have a one year old and I nap with him EVERY day!! I also notice that sometimes I don't do as well on tests, etc...because I can't concentrate like a normal person, and it's very hard to sit through long classes as well. It's great that you have a supportive roomate, that is awesome- I have a supportive roomate too, my boyfriend of 4 years- both of us were going to college full time when I got hit with POTS, and have since then moved into a more family-oriented environment and had a baby last year- so things have changed, but in a good way. We still go out with friends, and do "young people stuff" but my ability to keep pace with my peers has very much changed- forget about going to clubs or anything like that!! I just make the most of my good days, and try to get everythign I can out of life.

Anyway I just wanted to say WELCOME and I'd love to chat anytime- my e-mail addy is jessica@sneeked.com. Take care and feel good!!

Link to comment
Share on other sites

hey

i too can relate to school problems. i got POTS towards the end of my third year, and eventually i had to drop out because of it. but for the first little while, i kept trying to drag my tired *** to campus, and would turn back halfway to class and go back to bed (and i lived practically right next door...). in retrospect, it was pretty comical how hard i tried to make it through, but at the time full-time POTS and full-time school was murder. they just didn't mix.

i'm thinking about part-time, but i'm not sure yet.

Link to comment
Share on other sites

  • 2 weeks later...

Hey Meghan

I know it's tough. Just hang in there and be determined to not give in to this horrible illness. Easier said than done, I know.

I'm a single mother of six children. I work full time, recently had to go to 12 hour shifts from 10 hour shifts. I have a side job for some extra income that I do on my nights off. I used to go to school, had to quit, didn't understand why I was having so many medical problems.

A couple of years ago I felt like a super human, I only slept about 4 hours a night, every night. Now I have to sleep at least 8 (sometimes I sleep 12) or I exacerbate my symptoms. School has been put on the side line, but I think about it everyday. Hopefully with all of the treatments that the doctors are doing on me right now, maybe by fall I can return to school.

Just know that your not alone!

Steph

Link to comment
Share on other sites

Guest tearose

Hello Meghan!

This is my first post and unfortunately I am not feeling very well today however...

I am living/surviving with POTS and have been since 1991. I have the numerous years of experience to pull from to give you the hope that you will find the strength and medical support you seek to live the best quality of life you can. It sounds like you already have surrounded yourself with loving, supportive people! What I want to share is how important it will be to allow yourself to "change" your level of personal expectation along the way if/when you suffer an unexpecteded setback. In other words, just when everything seems to be moving smoothly, you get a cold or a virus that sends everything cascading and you find yourself unable to keep to your original goal. Just as challenging as the POTS are the dreams we hold and try to achieve. I needed to learn that changing my expectations was not the same as lowering them. I've learned how to take a task and break it down into many segments, managable segments. Good luck in all you reach for. Please take this gentle reminder to "be gentle with yourself", and put this thought away for the day when you need it.

...just as I'm reminding myself of even now.

Thank you for posting and reaching out, by doing so, you've helped me too!

Tearose

Link to comment
Share on other sites

Those are definitely words of wisdom, Tearose. One of the hardest things for me to deal with when I got sick was knowing that my life was no longer "on course". It seemed that everything was out of my control all of a sudden. I never did get back on my original course...but my life has gone in a new direction and I now have new dreams.

Meghan, keep in mind that research shows most POTS patients do improve with proper treatment. It probably won't happen over night, but the odds are in your favor that it will happen.

Hang in there!

Michelle

Link to comment
Share on other sites

Thanks to everyone for all of your thoughtful responses and words of encouragement. It is so encouraging to hear stories of those who have gone through similar situations as me.

Tearose, I really appreciated your insightful comment that "changing [your] expectations was not the same as lowering them." I am having to learn this too as I see the many ways in which POTS affects my life. As I am in college, my expectation was that I would finish college in four years, get my degree, and start working. However I am having to learn that I may need to take less credits each semester, even if it means that it will take me more than four years to finish college. I am a really determined person, and I often push myself to do as much as I can; yet I am trying to learn that in accepting my limitations because of POTS, I am not necessarily lowering my expectations.

Michelle, thanks also for your comment as to how your "course" has changed. I am learning to accept that as well. Also, I am keeping in mind what you said about the high probibility that POTS will improve with treatment over time. I am thankful that I have been diagnosed and am being treated in order that my symptoms can improve.

Thanks once again to all of you for your encouragement- I really appreciate it. I hope that everyone is feeling well!

Best Wishes,

Meghan :)

Link to comment
Share on other sites

Guest tearose

Just starting to get some strength back. This is day three on antibiotic for a sinus infection. It totally wiped me out and I didn't want to tell anyone how bad I really was. I get to feeling like my family and friends need a break from my medical challenges sometimes. Of course this is non-founded but I try to protect them from my sense of burden on them.

I'm glad I found this board.

I know it will take me another week of resting before I can feel strong again.

Today I'll need help with some food shopping, and I sure don't want to socialize right now. This is living with POTS. EVERYTHING seems to take longer, simple tasks for others seems monumental today. I keep telling myself "take little steps" as I walk slowly through my quiet day...

How are you doing?

Link to comment
Share on other sites

Tearose,

I am glad to hear that you are feeling a little better. Sinus infections are so painful!I hope that the antibiotics will clear it up.

I know that with POTS it's hard to do even the simple everyday tasks that others can do without much effort. It seems like you have a good attitude about it though, which is good. Keep hanging in there- I hope that you continue to feel better!

Best Wishes,

Meghan :)

Link to comment
Share on other sites

It's really hard sometimes for me not to get dragged down into negative thinking. I try my best each day to think positively. Some days that works, other days, not so good :)

I also think that it's helped to acknowledge that the way my body feels is *normal* -- for me. Doesn't stop me from hoping to feel a bit better, but I do try to stop myself from doing the "if only" self talk because I find that type of thinking really makes me feel worse mentally AND physically.

On the days when it's most difficult, I set little tiny goals for myself like: if I brush my teeth today, that would be good. If I manage to bathe, that's really GREAT. I also find it helps to not stay in my jammies even if I'm not going anywhere. Gives me some semblence of routine.

I'm fortunate that currently I am able to work F/T and go to grad school too. I feel like **** at night...and I feel like **** in the morning. However, I push through it. Some days that doesn't work so well and I end up staying home or missing school. Also, I have a bit of a back up morning plan if I know I'm feeling really wiped. I set my alarm on the loudest setting...and ask my spouse to call me in the morning to make sure I haven't slept through my alarm (we work different schedules).

I think that having the goal to finish my doctorate has really been the only thing kicking me in the butt to get out of bed for both work and school. Work pays partially for school, and my income from work will have to pay for the rest. Also, I changed jobs several times in the past few years until I found a better match for me--I now have a 7 hour work schedule and have all the school holidays and summers off for the first time in my career. I'm SO looking forward to my summer to have a less rigorous schedule.

Don't let anyone or anything take away your hope. Also, if you feel as though you cannot muster some hope, you might want to consider being seen by someone who treats depression and specializes in chronic illness. It's very common for folks to become depressed as a result of trying to adjust to major life changes such as a life-long diagnosis. In your readings you may find that some of the SSRI's used to treat depression also seem help some folks with POTS.

Hang in there! Nina

Link to comment
Share on other sites

Guest tearose

You make a lot of good suggestions. I think on most days, I know what to do, I just need to remind myself sometimes. Especially when I have to deal with yet another health challenge on top of the POTS.

I have such a sensitive body and other physical health challenges, that I must manage my POTS without medication. It means I am always doing behavior modification. I watch water intake, sodium intake try to some activity every day...my goals are simple. It is a banner day for me when I can do my activities of daily living, tidy up the house and put food on the dinner table! Medication is not an option for me. I just don't allow myself to run out of hope! No hope is not an option. I just keep on..., I don't know where the will to go on comes from sometimes...I just feel fortunate/blessed it is there. Also, now having this forum is strengthening. Thanks for being there!

Link to comment
Share on other sites

Tea, my body is also hypersensitive to meds. I have several dangerous allergies common medications that set off hives and respiratory dificulty. Boy do I feel for you. The only med I'm taking directly (well, really, it's indirectly) for POTS is Celexa (indirect b/c they believe it acts on the CNS, not ANS, but has some mediating properties). I live on anti-allergy meds. EVERY day, I take:

Zyrtec, Singulair, Advair and Benedryl. Without those things, I'm a big rash with a runny nose and red eyes.

Do hang in there--try to find some small goals to meet each day. That is how I survived when I was out on medical leave and unable to drive or do any physical activity beyond lifting loaf of bread.

:) Nina

Link to comment
Share on other sites

Here's a copy of a post I wrote on another forum. I apologize to everyone who has already read it. I just don't know any way to say it better than I said it there.

"Gosh, I don't know where to start. I was diagnosed with POTS almost 2 years ago. I have had periods of time when I think that I will die because of tachycardia and angina. Then there are times that I'm dancing around singing "I'm cured" (those times are few and far between but they give me an incredible amount of hope). When I was finally diagnosed with POTS I was relieved just to be able to put a name to what was going on with my body. I quickly found out that a diagnosis is only that and that with this condition treatment is hit or miss. Prior to developing POTS I was a person that got the most out of every minute of life and even if my body didn't feel like going my mind could do a mind over matter thing. I was like the energizer bunny. And then one day, no matter what I tried I just couldn't go anymore.

In the beginning there were periods of time that I thought, "Why me? I have so much to offer the world." And then I would think, if this is how the rest of my life is going to be, please make it short. Then one day I decided that the one thing I won't let this disease take away from me is my passion for life (and believe me it can be a constant struggle).

Here's what's helped me most:

1. My initial visit with Dr. Grubb as well as my follow-up visits.

2. I have a cardiologist and a rheumatologist in Minneapolis that are my primary care doctors. They work together with Dr. Grubb. They are more knowledgeable than most about POTS and they are willing to learn. I actually think that they are more like scientists than doctors. I think that they are the most important part of the equation. I know it's hard when you feel like crap to look for a doctor that understands this illness, but in the long run it makes all of the difference.

3. I gave up friends who didn't try to understand the limitations of my condition. (I don't think that they were really friends because the ones that I've kept are wonderful!)

4. I made a new friend who has POTS (hey Steph), because no matter how wonderful my husband and family and friends are sometimes they just still don't understand. I don't fault them, I don't even inderstand this condition.

5. I figured out how to get the most out of my "new life". I went from a very successful career to lying on the couch watching life pass me by. Now,I'm back in school part-time working on my masters. I might be 100 before I get it, but it's doing wonders for my self esteem.

6. I believe that some day there will be a cure for POTS. It might not be in my lifetime, but that's not stopping me from looking for answers, because if I don't keep looking than all of this will be in vain.

7. I tell my doctors that I have a short memory. I do my best to let my good days erase all of my memories of my bad days.

8. I've kept my sense of humor. For years I've had a poster in my office that says "Laughter is the best medicine. Unless you're really sick. Then you should call 911." I can't even tell you how many times a day that I look at it.

I'm not going to pretend or tell you that I don't get depressed. I do, but it's short lived because I tell myself, "Now, how will being depressed help the situation." My answer is always the same, "It won't." So then I channel that energy into something that might help.

Whoa, this is long. I'm not really as philosophical or spirtual as I've come across in this post. I'm just very competive and I'm doing my best to not let POTS take away my zest for life."

Hope this post gives you some inspiration.

Bren ;)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...