shannon

You must be so upset! I know sometimes it feels like you'll never find a guy who can deal with your illness (I feel the same way lots of times). I just try to remember that any guy who doesn't know how to love me and respect me in sickness and health is not worth my time. You should truly be proud of yourself for all you've overcome throughout this illness. Love yourself I hope tomorrow is a better day for you. Take care! Shannon

ohhhhh, thank you THANK YOU for making me laugh. This is one of those days when I needed that.

As far as I can telll, Mestinon has helped my energy level and overall functioning. I have some brain fog, but nothing severe....I'm a full time undergrad student and am still able to concentrate on school. I used to be on topamax (for migrains), and that impaired my concentration much more than mestinon. I'm sure the side effects vary for each individual. Don't be afraid to discuss your concerns with your doc. I hope everything works out with your treatment! Take Care, Shannon

Thanks for the poems! I like the idea of fundraising with a collection of poems. I have written several about POTS, although mine are not nearly as good as others I have read here. Maybe I'll post one sometime.

My symptoms are tough to trace back (as far as the start of them....it was so gradual). I know I've had it for at least 5 years. My mom thinks I was born with it, though.

Hey everyone, Thanks for the replies and tips. I'm still not sure what to do. I'll have to think it over. I called Dr. Low, but he hasn't returned my call. Hopefully he'll have some ideas. Thanks so much!! Take care, everyone! Thanks, Shannon

I've developed a new symptom, and it seems to be getting worse. I often feel "air hunger" .... I am not sure what to do about it. Anyone have lifestyle tips that would help this? I woke up with a jump at 4am today, and I felt like I had not been breathing. I had to sit up in bed and take very deep breaths for a long time. Then I was scared to fall back asleep. I can tell that this is not a structural problem with my lungs because I am capable of breathing. It just seems that my body is forgetting to breath or something!! I am going to TRY to get ahold of Dr. Low this week... hopefully he will have some tips. If anyone has experienced this and can give me some pointers, please do. Thanks so much!! Shannon

Hey, I wish I knew why we get the chest tightness and pain. Dr. Low did tell me that it is a common symptom in POTS, but he never explained what causes it. He did say that paxel is one medication that usually helps the chest pain symptom. Since I don't normally have severe chest pain, I decided to stay off the paxel. If your chest pain becomes severe, maybe you could ask your doctor what he/she thinks of paxel as a treatment. hang in there and take care! Shannon

Thanks for sharing that. I could really relate to what you were saying! Shannon

This is an interesting topic.... I have always wondered about a connection between autoimmune and POTS. I have two sisters, and one has iritis (an autoimmune disorder). My other sister's autoimmune system attacked her thyroid, and she presented with symptoms somewhat similar to POTS. Also, both of my sisters have panic attack disorders. I honestly have not researched this topic, but it just seems that there is a connection of some sort. Who knows.

Willows, Sounds like you are really having some tough times. I wish I could do something to make you feel better It's okay to cry, though. And you can come onto the forum for support anytime, and we will be here for you. I guess the fact that your doctor is able to admit when he is in over his head is a good sign....at least he doesn't minimize your pain. Still, it must be very frustrating for you. Perhaps you could have a referral to a POTS specialist. So sorry you are going through this, and I will keep you in my thoughts. Shannon

Hi Sonotec, Your health and wellbeing are in my thoughts. You are an inspiration to us all!! ~shannon

What a great idea!!! You know have dysautonomia when.... When the highlight of your day is keeping food down When your friends are so tired of hearing about you being sick that you just pretend to be healthy When just the sight of your favorite food makes you sick When a sit down shower feels like a 30 mile hike When you get jealous of friends who can complain of having the flu for three days (and you have nobody to complain to of being sick EVERY day) When the insurance company calls you out of the blue When your parents/doctors tell you to be less involved in school and extra activities When you feel so misunderstood that you come onto DINET for support even when you have a terrible migraine or can barely even sit up to type When you know more about your illness than most doctors seem to

Thanks for that!!!! Thouroughly enjoyed it! Shannon

Welcome to the forum!! Glad you found us. Hopefully the DINET resources will answer some of your questions. And you EVER feel like venting, just make a post or pm me!! Shannon

I've been working at a summer job that requires far too much standing for me to handle (Tomorrow is my last day! YAY!) My health has gotten worse while working at this job, and my body has tacked on a couple of new symptoms. I'm wondering if anyone has lifestyle tips for dealing with these: 1.) Difficulty breathing. I am often struggling for a deep breath, and I feel like I have to remind myself to breath at all. 2.) My hands have sharp aches and pains. I am assuming this is dysautonomia related ... (?) Any advice would be great!! Thanks, Shannon

Hope I'm not responding too late... i haven't had access to the net for awhile. I plan on buying one (Adult Small) for sure. I may also by a couple of larges (???...sorry i don't know for sure). Thanks to all of you who have organized this!!! Shannon

Two weeks? Wow, you must be getting tired of that migrain. I used to have daily migrains, and I know it is not pleasant. Maybe it would be worth it for you to see a neuro. Who knows what ideas he/she may have. Another thing that seems to effect headaches a lot is diet. It is really tough to figure out what foods might trigger you (I'm still working on that!). But I know that aged cheeses often trigger migrains for some reason (of course it is individual). If it gets totally unbearable, maybe you could go to the ER. I have had to do that several times. They just gave me an IV and let me sleep it off. It actually worked. But I will also add that (at least for me) narcotics are not the best solution to migrains. For me, they just caused rebound headaches. I wish I could think of some better ideas for you Take care, and I hope that migrain goes away soon!!! Shannon

Hi, I live in west central Minnesota. I would really like to have some sort of Midwest get-together. It just depends on my schedule and everything. Keep me posted! Shannon

Hi, I know that symptoms and severity are very individual and varying. But I thought I would lend a little hope in saying that I am not nearly as sick as I was upon diagnosis (and the years before it). Even though I wasn't able to do much back then, now I go to school full time AND work 6 hours a week (at a sit down job). I am very lucky to be living a fairly normal life, and I know there are other POTs patients out there who are too. Take care ~~~I hope you find your own miracle treatment soon Shannon

Hi Susan, I just PMed you about this. But I wanted to add that you shouldn't hesitate to try out the ER if the clinic won't get you an appointment soon. I would guess they would take you in for medical testing....they are supposed to be the best, right? Take care, & I hope you find some answers soon. Good luck! Shannon

This was such a great story!! A great way to explain chronic illness to healthy people. Some things that cost me spoons: Getting out of bed Brushing my teeth Washing my face Showering (even with chair) Putting on and taking off compression stockings Stress Busy surroundings Forgetting Fluids & Salts Being woken up by noise (cell phone, alarm, etc) Sitting up through a whole class Eating Not eating Heat Typing, sitting at computer Climbing stairs Walking & standing Doing my hair Getting dressed Not getting enough sleep And I gotta agree with Gena when she says.... medical tests and dr. appts. Again, thanks for sharing the story!

Hi Linda, This is a topic I have spent a lot of time thinking and crying about too. In fact, I cried just reading the messages on this post. I want to be a mom someday too...I've even thought of ideas for baby books! But like you, I don't know if it is going to happen for me. I think we should both remember that POTS is a dynamic illness. Maybe someday you will feel well enough to have a child....either with a pregnancy or adoption. If you ever feel like venting about this, feel free to PM me. Take Care!

Hi Dayna, It took me awhile to get used to those too!! Mine were super tight at first to, but they have actually loosened since I've been wearing them for so long (i don't really know if that's good or not...). I wear mine everyday now, but I didn't used to have to. Right now I really notice the difference when I don't wear them. I don't know if my body has become dependent on them or what. I have the stockings (just up to my knees). My thighs still get that "funny" feeling, so sometimes I wonder if I should wear the full hose. You should let us know how the hose are after awhile. Sorry I don't have any great suggestions!! Oh, and you're right.....they are just soooo sexy, right? haha. Hope it all works out, Shannon

I'm glad your first dose helped! Just thought I would add that I used to take 80mg of Inderal. My blood pressure dropped very low while on it, and I had to stop it. That was a few years ago, and Dr. Low put me back on a lower dose now. He says that since I'm older and taking mestinon, the drop should not happen again. I guess it just depends on your personal history. Take Care, Shannon