jkoconne

hi all, Yesterday I started mestinon. About 30-60mins after taking it i got terrible stabbing pain in my chest on the left side, right under my breast, it feel almost like a sharp stake in going through me. Ive had a similar pain but not as intense...this stops me in my tracks and takes my breath away. I occasionally have pain when breathing out but when this more sever pain comes...breathing in and out hurts, it feels like it turns from stabbling into cramping. As the day went on it faded and then after my second dose it came back worse...I dont know what to do. I really want this med to work and im not sure if this is a side effect because i cant find anywhere that says chest pain is a side effect but then this morning my chest felt totally normal...but 45mins after my i took it my chest pain came back. My vitals are normal when i have the pain but my bp monitor shows minor pvc's (it beeps at me if i have them while its doing a reading). So my question is: did anyone experience a reaction like this? what did you do? did it get better? Im going to call the doc tomorrow morning Thanks!

For me my body responds differently each time. I can have a glass of wine and be very symptomatic the next day and other times I can have a couple margaritas in a night and be totally fine the next day....Its still a mystery to me!! But i drink an extra 20oz of water per drink I choose to have to keep my hydration high and tachy low. I have noticed that my bp always drops the morning after drinking so I need midodrine as soon as i wake up on thoes days. Hope your body is more predictable

Dizzysillyak - thanks! I was tested a month ago for parasites and i was clear. But have you heard of Protoza's? there has been some talk on the forum about this new idea. I tested positive for it 4 years ago but the doc had not yet connected it to pots and knew little about it so Im waiting to go back to Dr.Fry until he has a better understanding of it.

Potluck- I started midodrine a little over 2 months ago but this didnt start until 3 weeks ago and docs dont think its related. I use to feel this way but its been a long time! Relax86- Thank you for the encouragement

Hey puppy love, I forgot to mention in my last post that the times I have been okay taking oral medication and then having a reaction when given through an IV had to due with my liver enzymes not processing medication properly. You can message me for details but most docs know what this means now. Its a simple blood test. The test saved me from many more negative reactions! not sure if this will help at all but i thought id pass some info on

Joann - thanks for your input. I know the fine line all too well. Im trying to do what i need- class, exercise, eating- and giving up all the other things until I can slowly add them back in. Anglea- Im sorry you're having a rough start to the year too! Im sorry you're sick again, i know the flu hit you harder then it hit me in dec. I hope you get better fast Im still on midodrine and my Gi and neuro told me to try to add in mestinon (spelling?) this weekend..they think itll help with my GI symptoms I hate Bananas- Thanks for the advie! Im trying to cut all dairy out...i started to wean off it in dec and im down to a very small amount about 3 times a week. I havent seen a difference at all. Im also gluten and corn free. I do digestive enzymes too and depending on how bad the pain is I adjust my meals from normal diet to liquid diet :/ I know what you mean about the lower abdomen pain. All my docs said endometriosis, since it runs in my family and all the symptoms said that...went into surgery a year and a half ago and they found nothing Then they told me it was pelvic floor dysfunction sooo with this flare up my Gi and neuro have decided to try mestinon (spelling?) in hopes it will help!

Hi all, I had been doing pretty good the past few months! But then i woke up 3 weeks ago and its been down hill from there. My stomach has gone back to how it felt 2 years ago...Im neasuous all day, my stomach wont tolerate much volume and it wont empty the same. My gi tract is moving so slow and causing so much pain (stabbing and cramping). Im so upset becasue I dont know what happened...i was doing good and nothing changed! Im still trying to do my daily workouts but its hard when im in pain, Im trying to get my 90oz but with my stomach not emptying the same anymore Im struggling to get 70-80oz. Ughh...being in this spot has really made me realize how far ive come the past year and half/ 2 years and I dont want to back track like this. Has anyone else experienced something like this?? Doing good and then wake up and start back tracking for no noticable reason?? Im really trying to stay positive but I saw my GI and she couldnt explain why things got bad again. My neuro told me it was a flare up and to listen to my body. By that he ment keep trying to do my daily routine, eatting and fluids but dont push myself and give me body rest if it asks for it. Well...its always asking for rest now. My tachy has been so bad that after a few hours of being awake and a light workout Im ready for a serious nap. I know when i feel that way i need to give my body what it wants becasue, knowing me, if i dont ill get extra set back. But when i do that I cant get the school work i need done, or spend time with family and friends or do the little things around the like laundry and dishes. Not doing thoes things add stress and the stress makes symptoms worse. Its a teribble cycle. I work with a congitive behaviorist who helps me deal with stress but in times like this that doesnt seem like enough. Does anyone have advice? Im sure many of you have been through something similar. Thanks much

Oh no! im sorry to hear that happened! Hope you're feeling better! I have also done fine with certain oral meds and then terrible reactions when given in an IV...its such a scary feeling when thoes reactions hit Im glad it ended for you! Hope you never have to deal with it again! 3 bags of fluid sound like heaven to me right now...my stomach is not allowing me to get enough fluids the past few days.

Hi all, so i live in Az. Whenever we get rain and espically a storm I have really bad chest pain. I can basically tell when a storm is coming because I get pressue in my chest and then comes the pain. Does anyone else get this? Its so annoying to me! Rainy days use to be my favorite, they come far and few here. I loved the lazy feeling and cuddeling up on the couch to watch movie. But now I have to try to stay positive about a rainy day because the pain that comes with it My doctor said she assumed Its from the change in air pressure. I understand that but is there anything to help it? If this happens to anyone else let me know if you have any tips to make it better. Thanks! Hope you're all doing well

Hi, Good luck to you! Please let me know how you do with the protocol. My neuro (pots specialist) advised agaisnt me doing it, said I would get worn out and set back. He created his own plan for me. but Ive heard great and bad things about peoples experiences. so if you're up to it, keep us posted on your progress! And im in the same boat with doc appointments! Very frustrating!

Hi all, Tomorrow is a new year and ive very egger to start it! As many of you know I've been batteling this illness for years but have only had a diagnosis since Aug. Since Aug Ive made many life changes. Continued to be GF, Drinking 90oz daily, Intake of 10g salt daily, working out a min of 5 days a week. All of these things have seemed to help! A few weeks ago I went back to the doc and got prescribed 2.5mg twice daily of midodrine. Its worked wonders! My brain fog is so much better and my legs are not nearly as swollen. I even need new shoes becasue my feet arent so big/swollen! After the new med helped so much I decided to try yoga again and I made it through the whole class with minimal symptoms! :)Its been years since I could that, Im so exctied I get to add it back into my workout routine! I could look back on last year and come up with so many things I couldnt do/attened or the number of hosipital visits becasue of my POTS. Trust me, there are plenty but I'd rather look at all I did do. This year I achieved a healthy weight, I successfully took 4 classes in a semester, I workout, I got a diagnosis and ive made changes to my lifestyle to get better. I like to value these things more than things I couldnt do. Im thankful I still have the ability to reach my goals just by altering them slightly. All of thoes things I couldnt do a year ago. Im not sure what changed. I do know having a diagnosis did lift my spirits! Im looking forward to entering 2013 with a diagnosis and the motivation to do what i need to get better! This journey is filled with ups and downs and crazy twists. I want to stay thankful for the things that keep me going and let me keep living this life! Even if its not what I had visioned, planed or expected. This fourm has given me a sense of community and made me feel like Im not alone. For so long I did, espically when so many doctors/people were telling me it was in my head. I want to thank all of you for your support, encouragement and knowledge through my journey!! I wish the best for all of you in this coming year!

oh no! im so sorry to hear this Anglea, Ill be sending good thoughts and prayers her way! Please email me details

I have problems with elevators too. It has only been in the last 6 months. I avoid them when I can now but its hard because stairs give me really bad tachy. I seem to need to choose between feeling dizzy and unstable or tachy...i tend to choose tachy. It goes away faster. I agree with diamondcut that it has to do with the gravity. The longer (level) I have to be on the elevator the worse it seems to be.

I dont have a clue what causes it but i have simliar symptoms. Same urge to urinate. And then i belch all the time once im up for more than a half hour...its embaressing! but its just how ive been for years

Ive been gluten free for years. I know a lot of yummy brands to eat and stores are carrying them more and more. Many of the ship too! Feel free to PM me and ill send you a list. Do you have any other food allergies? Becasue I have to avoid corn too so the brands I like are corn free too but ive heard the GF stuff with corn is much better!

Ugh how frustrating for you! The first 2 cardiologists I saw told me that it was typical for a young girl in her 20's to feel this way...and one didnt even bother listening to my heart! Im sorry you had this experience

Saline works with wonder with me. I can only get it by checking into the ER though I had a neuro apt today and asked if there was a way I could get it otherwise and he said no. He also told me that he doesnt want me dependent on it. I dont feel like I am at all. I use it when ive been super symptopatic for days or when I get sick (clod flu ect.). But for me JUST checking into the ER is $250 and thats a lot to spend when all i need is fluid to get my symptoms under control. I hope you have luck with the port

Issie, What are you doing to increase NO? How do you know you need this? Oh I met with Dr. Goodman today and my mom wanted so much to bring this up but I had so many other questions I decided to save it for an other...a time when my pots is more managed.

Thanks for asking this question! I have a neuro apt today and my doc prescribed Midrodine and if that works for 3-4 weeks he wants me to add on Mestinon. I have found less info in past post about Mestinon then midrodine.

Im the same way! but i have no found anything that helps yet. My feet have been this way for years and at first it was concerning but now im very use to it.

Thank you for the support everyone!

Thanks!! Lets grab lunch before I go back to school jan 7th! I will email you later today. Still recovering from the flu

Hi all, Im happy and proud to say I passed my calc class...one of the hardest things Ive done since i got pots. Not only did I do that but this is the first semester in college ive ever successfully completed 4 classes in one semester!!! It was very hard, the hardest thing ive ever done. I sacrificed a lot in the sence that I was exhausted more often and had more bad days then good. but all in all I reached a goal of mine and I am so very happy! I honestly never thought I would be able to do it. Especially sine 2 of the classes were on campus!! But I did it! Its such a great feeling knowing I can still achieve goals I set years ago with only the adjustment of time to them. Today is a good day for me! Tomorrow I see my neuro and we will discuss the next step in my plan to manage pots. Things are looking up after having a really hard time. Our journeys are filled with constant ups and downs. Im happy to say that i seem to be on the ups of things now! Just want to share, thanks for listening

I PASSED my class! Barely! but still, im very proud I made it through it all. This is the first semester I took 4 classes and didnt have to drop or withdrawl from one. Very big accomplishment for me. It wasnt easy, it was really hard but worth it in my eyes

I used yaz for years to have a period every 3-4 months. I just skipped the fake 4 pills at the end of each pack and started a new pack. It was heaven! I went months without that 2 week flare i was use to getting evey month and could prepare for the 2 weeks evey few months. but then i had to stop yaz becasue of health issues (liver enzymes) and then the added risks that come taking yaz. My doc prescribed loestrine24 but my body didnt tolerate it so now im on neuvaring and trying to do the same thing...dont get nearly as good of results. Each time I change a ring I get sick as could be an hour later for 2-3 hours. Oh the reason I had a period every few months instead of stoping it completely was that becasue Im only 21 my doc said it would be healthier for my future fertility and health in general. So all in all. Yes, ive done it and it was great! but make sure your on the best birth control for your body and see your gyn if you have any symptoms out of the ordinary. Good Luck!