lloppyllama

Hey Sara!

Welcome!!! I havent been a member all too long, a little less than a month i think. But i have found it to be a great help in coping!!!

Glad you finally got your diagnosis, its such a pain to be left in the dark.

Welcome, hope you have a nice day!!

Mary

Hello,

Its too bad you havent been able to find anything that helps yet. Metoprolol is the first BB i have been put on and so far (a little over a month now) i would say that it helps!!! It has slowed down my heart rate when i am at rest significantly. So for me i have no complaints about the drug, and from my experience would say that it is deffinetly worth trying!

Hope it works for you if you give it a go!! Good luck!

Mary

hey,

I forgot to add before that i am on a beta-blocker, and it has been very helpful in lowering my heartrate because my heart rate gets very high, and it deffinetly makes a difference in reducing it. so that might be something goo to check out because mine is only 4.00 regularly priced(that is without insurence, it only costs like .80 with mine, but yours might be differenet) so with the money issues that could be good, because that is once month worths supply.

have a great night!

Hey anna,

My name is mary, im 15 so im about your age, there arent alot of people here our age so it will be nice to get someone's point of view my own age!

I sent you a PM a few seconds ago before you added your post so you can check that out.

Welcome!!!!!!

Hey Lauren,

First off I want to welcome you to the forum, it has been a great help for me in dealing with all my POTS issues! I do take an anti-depressent, it isnt a replaicement of florinef, for i was never told to take that...or yet at leaste, but it is for pain management when trying to sleep at night. It helped a great deal for about the first 10 months i was on it, however now i think my body is starting to get used to it and its not working as well.

I dont really have anything to help you for your other questions, but im sure there are others here who would be able to help you out!

Good luck, glad you found us, too bad you have a reason to be here, however since you do i think it will be a HUGE help in dealing with everything.....i know when first being diagnosed it can be quite overwhelming, i was only diagnosed in mid-April, but have since learned a great deal of information about POTS.

Hope you have a nice evening!

Mary

Hmm, thats good that it wasnt anything serious and just the darn pots acting up again, but I know how important going to church services on sundays is for me, so understand how you would feel when you have to leave. I have had to stay home some sundays, however i have been very fortunate, which is good since my faith is such a huge part of getting through this in one piece!

Hope your doing better now!

Have a wonderful day!

Mary

Hello,

I dont have MVP but experience this too, like i will wake up and have tons of energy and then i will be like yay i can finally do stuff!! so i will and then i end up overdoing it and crash, i dont know if mine is the same thing, since yours isnt necissaraly from over doing it, but i guess it might be...not too sure.

But i know one thing no matter what its from it is very annoying to one minute have tons of energy and then the next your "dead".

Have a nice evening.

Mary

Hello Heidi!

I used to take midodrine for migraines however it did absolutly nothing for me so they took me off of it, however I dont recall having any bad side affects.

The meds im on now would be nortriptyline for pain at night so i can sleep, metoprolol for my BB which you said you cant take, and then I take iron for RLS. I dont know that this would be of any help to you other than possibly the nortriptyline possibly you night problems but i dont know that it would get rid of the cramps, maybe just help you sleep through them???

Sorry i wasnt much of a help Hang in there, best of luck!!

Mary

Oops hehe i did know that silly brain fog!!!!

Yes two pair a month would be awesome, but actually rather waistefull too!

Have a great night!, or morning i guess for you, i think you said you had a doc. appt. today too, hope that goes well for you!

Awesome! Glad that worked out for you as those things are quite spendy, but in your case you only get 2 a month if i remeber correctly.

I will have to try that one on the run/ladder i have since it worked for you, hopefully i will be as lucky and succesfull, thanks for letting us know that it does in fact work even if its a larger run!

Have a nice night!

Right now i am on 50mg. I used to take gabapentin every day like 1,000mg i believe...but then it stopped working since i was on it for a while, man that seems to happen alot!

I will deffinetly let my doctor know when they call me back this week, because it certainly is annoying to be more tired than the norm.

Thanks for the help!

Mary

I am on nortriptyline for getting to sleep and staying asleep since i dont sleep well because of pain. Lately i have been waking up several times during the night from being all tachy, my heart is just going so fast it wakes me up. Its really annoying because i then cant get back to sleep for like an hour and then once i do, i wake back up again cause my heart is racing!

I'm not sure if my meds just arent working as well since i have been taking them for about 10 months now or if i just never had problems wiht my heart racing during the night before. But if anyone knows of any ways to make this not happen so much, or get back to sleep if it does, i would really apprechiate the help, thanks. I guess i just might have to change my meds, idk we will see, i thought these worked pretty well but maybe just not for such a long period of time.

Thanks,

Mary

hello everyone,

I was just thinking and from reading a post from last week i saw that for some people moving fast ( like in a car or on their scooter) is bad for their pots of other dyautonomia problems, however i was wondering if for some of us it can be good. I'm wondering if its like watching it specifically what is bad cause you get dizzy, but if you dont watch (which would be bad is your driving the moving fast thing...but if not) then actually since your moving fast its not as hard for you body to work against gravity to circulait (sorry i am an awful speller!!) your blood. I have just noticed that i it actually makes me feel better to ride in the car sometimes, other times it makes it worse so it probably depends on what that days symptoms are primarily from, but it just seems strange how it can make me feel better to be moving like that.

Idk its just a thought, i also noticed that when i went for my walk today that the wind outside actually kind of helped! Im in MN and its really windy right now its crazy!!! But anyhow it was strange but it almost seemed to be helping i havent come up wiht a theory as to why this is but i did notice it.

Thanks! Have a great day!!

Mary

Thanks for the replies!

A more in depth way of describing mine would be that i feel like im not getting enough air to my lungs and then i get dizzy and lightheaded from that, it doesnt seem like it would be hypervenalating since it happens at random times when im not overly emotional about anything.

That usually happens just when i am sitting down, or standing sometiems, but i havent noticed that excersising makes a difference with that kind, i mean i get tired when i excersise and get the normal "out of breath" feeling but other than that no.

There is one more kind i experience, its like i wake up and i cant breath or im not breathing, and i cant talk and im really out of it, this has happened like 3 times i think, and its very scary.

I dont know what could be causing those things but i will deffinetly tell them to my pots doctor when i see him next month, if you guys have any ideas feel free to share!

Thanks!

Mary

I have recently started having trouble breathing, i tried doing the whole breathe in through your nose and out your mouth, it helped somewhat but not alot. It was a scary feeling and has been happening alot lately...just wondering if anyone has any tips or experiences this too!

Thanks,

Mary

Many of your symptoms are ones that i too experience, and i do have POTS, however i am not a doctor so i cant say for sure that you do, or that you dont. I do however think that it would be a good idea to see a doctor who knows what to look for and how to properly diagnose POTS in someone.

From reading you signature i saw that there were alot of other things going on in your body too, so there is the chance that it could just all be from those other factors. Sorry im not much help, best of luck to you!!!

One question for you though, i see that your have RSD, i was just wondering what it was like, because alot of my doctors say yes i think you have RSD, but then i went to a specialist and he looked at me for 5 seconds and sent me out saying that i didnt have it. Just wondering what it is actually like and not just what i am told, i realize that every person is going to be different and i cant gage it just off of your symptoms from it, but i just wanted to get someone's point of veiw who is experienceing the problems.

thanks, have a great day!

Mary

Wow Angela you sure are going through a hard time right now! That must be soo incredibly annoying to have your skin hurting like that all the time, and all over your body. Sounds like your dealing with this very well, good luck I hope that the neurologist figures out what the problem is for you so that you can get that taken care of!!

Good Morning!

I was on this med. for about a year when i was younger, so i hadnt gotten pots yet, however i didnt find that it helped with my allergies....its tasted good though! So i went to allegra which actually works for me, i dont take it too often anymore since i kinda grew out of my allergies, however now that its summer and people are mowing their lawns i might have to (im allergic to grass..lol)

So all i would have to say about the clariton is that i didnt find it to be strong enough for my body, but i didnt have any bad side effects, however i wasnt potsy yet either...

Best of luck!!

Mary

I dont know of any good repaires but, if you figure out one that works let me know. Hope you have good luck.

So are you stockings covered by your insurance then? Because they can be quite spendy...today I went to the store at my hospital and got some thigh high ones but their compression isnt very high only about 16mmHg...and they only had ones that went to 20 but those were only knee high and I could really use thigh high or even waiste high.

How do you find out what level of compression you actually need?? Do you order your through your doctor?? Like as a prescription???

Thanks,

Mary

Hey Donna!! Welcome!!

Dont worry about the long post its great to have backround info on people so you can know somethigns and relate to others, not just in how crappy we all feel all the time.

For the nausea; i have it quite alot of the time, and i dont remember who, but someone on here said they eat carrots to get rid of it, and supprisingly it actually helped with my stomach, so i guess it might be worth a try for you!

Sounds like you have some great kids! That is wonderful how much they help you out, as im sure it wouldnt be easy taking care of all the house chores along with your health all on your own.

I dont know of any doctors that would be able to help you out since i live in the Mid-West. Hope you find a good one soon though!!!

You said your 15 year old son just got his permit, well i am 15 as well and got mine a few months ago, and just love to drive!! (when i am feeling up to is that is) So i can understand his excitement there.

For the weight loss problem, i havent lost any weight from my nausea, however i was on topamax for about a week and i lost like 10 pounds becasue i was never hungry. Since that happened i have learned that even if im not hungry i have to eat or i will lose weight very quickly. That can be quite tricky since I'm so nauseous the majority of the time, however i try eating foods that dont make it worse, and posibly even help it, like the carrots.

Best of luck!!

And once again WELCOME!!!

Mary

Hey Jennifer,

Sorry your feeling so down. I get that sort of dizziness alot, its like your pretty good if you jus sitting or lying, but if you move even when you are sitting or lying down, you feel very faint. But i know what you mean when you say its not that your spinning its just kinda "fuzzy" almost for me and for me it seems like i dont know whats going on as much.

When you mentioned the pressure under eyes, and around your cheeks that makes me think sinuses(sorry i am a really bad speller!!) So perhaps its allergie related if your having pressure there. I dont know, good luck!! Hope your feeling better soon!

Mary

I dont know what to tell you on what to do about it (like weather or not to go to the ER) but i too have been getting alot of chest pain lately from the POTS. Hope you start feeling better, and i hope you're ok wiht your husband gone and all!

Best of luck!

Mary

Awesome, thanks for all the help!

I am on the ferrous sulf of 325mg two times daily.

I will try and take it with vitamen C and hopefully that will help me to digest it better, i will also search google, thats a good idea.

Have a great night, I'm off to school to play for graduation....hopefully i can sit for that long of a period, its also hard cause i play the flute and i usually dont have enough energy to get out the high notes, o well i will do my best!

Mary

Oh wow he is soooo cute!!! I was just at a graduation party earlier today and they had eight little kitties...needless to say that is where i hung out most of the time!

I have a bunny named George...haha just thought i would add that, good name!

Have a nice day!

Mary

I was put on an iron suppliment a while back and it seems like everytime i take it is gives me diarhea (sp....and sry gross i know).

I was just wondering if anyone else on iron has figured out ways to not make that happen, because even though i take it wiht food i still get an upset stomach.

Thanks,

Mary