lloppyllama

Hello,

I dont know if its the same thing, but for my i describe it as like when you shake a nail polish bottle that has those "beads" in it, mine sounds like that, and its right in like the back of my ear, but it doesnt happen unless i am moving (ie...walking, running (havent ran in like over a year but yea))

I dont know if that is the same kinda of dyscription of your, but if it is let me know, and maybe we could figure out what causes it!

Have a great day!

Mary

Hi sorry to hear that your having such a rough time....

Perhaps could it be from going off the steroid, since that med. was probably very storng, so perhaps the drastic change to your body is what caused it??

Best of luck, hope your feeling better!!

Mary

Welcome!

I too am rather new here, and have found it to be a great help getting to talk with other people about dealing with life as a POTS patient, or other forms of dysautonomia.

I dont however have any help for you on dealing with pregnancy since i am only 15, but best of luck to you!!

Once again welcome, we are very glad to have you here with us!!

Mary

Thanks to everyone who replied, Jacquie thats quite strange that we both started getting strange hick-ups around the same time. Do you ever get like a random hick-up, cause i get that alot and its just so strange......

Thanks,

Mary

Hello Everyone,

For that last couple of days i have been having these hick-ups and are like really really big, and they wont go away, or if they do they come back withing like 10 minutes. Do any of you experience this??? Cause i am trying to figure out if it could be from the pots or if its just like from something im drinking or eating (but its really not different than normal) or maybe there is something else weird going on...dont know. Any help would be great, Thanks!

Mary

Hey Maxine,

Im so sorry your having such a rough time! You are going through quite the rough patch,

I do experience feeling "drunk" and alot of people think that i must do drugs since it seems im so high, well since i dont do drugs its not from that, i think it is just the crazy old pots acting up. my speech gets goofy but i havent noticed that it is significantly more when i am "drunk" than just on a regular "bad day".

I think that it would probably be a good idea to talk to your doctor about it since your mri showed some abnormalities and all, maybe that is causing it, i dont really know what to tell ya, good luck though. Keep us posted on how its going.

I hope things look up soon for you and your family, my prayers will be with you.

Hope you have a good night.

Mary

Thanks for all the replies! I'm glad to hear alot of you also experience this, well not glad since its kinda creepy and all, but im glad to know that im not alone in experiencing this.

Have a great evening!

Mary

I have been getting this alot lately too, i think for me its worse right now because the weather is alot warmer than it was before. It kinda scary when i am at school walking on the stairs (cause my doc says i cant use the elevator) But yea i just school is almost out now, so it should be not as scary soon.

Hope your legs start working better for you soon!!

Mary

My nurse that works with me taught me them, and then when searching around on the dinet sight i spotted them too!

Along with Rachel i think that the YAZ excersices are probably a good choice for you!

I do some of them every morning, and they really seem to be helping!!

Best of luck!

Mary

Ok so lately i have been noticing that when i am sitting or standing my body sways back and forth and i am not the one making it do that. i guess it could be because i get very weak and faint so its like me kinda tipping over, but it is sooo continuos and equal that it doesnt seem like that. Does anyone else experience that???

Have a wonderful day!

Mary

hello everyone!

My mom was just wondering if anyone uses like an oxygen tank kinda thing since alot of the problems are from not getting enough oxygen to the brain or watever.

Thanks,

Mary

Ok super thanks!!!!

Corina i am just like you in the fact that i LOVE pastas! i too am not a fan of spicy sauces...so i cant eat the ones my dad makes. hehe. but they are not hard on my stomach either and i really like the taste of them two!

Melissa, regarding getting too wraped up in things i will deffinetly have to make sure i dont, because i am the type of person who worries alot, however pots has actually helped me in that department greatly because it has taught me that you cant get all worked up over the little things, because it will just make me get sicker and then thats not good, so it has deffinetly made me more easy going.

i do think that the compression hose have been helping wiht my stomach or at leaste they have helped stop the diareha (gross i know....sry) which i have had on and off for weeks! bad because it makes me dehidrated which we all no is not a good combo wiht pots people.

i think i will talk to my doc about caffene because i have always been a person who handles caffeen very well before i was sick, and so hopefully it would give me that boost i need for the day and not make me jittery (sp?) plus i love coffee!!!! haha i know i am kinda young but its soo good! hehe

thanks for all the help, have a great night!

Mary

Hello,

Melissa thanks for all the information, i will deffinetly take into consideration that the compression stuff might not actually help if it is too hot, but it still might too, i will just have to see how that all factors in for my body.

I really like the book idea, i think that is deffinetly something i will check out for next year!

And regarding your cousin Mary, my gymnastics coach (from when i was able to do gymnastics.....that was actually what caused me to get POTS ) was named melissa, and i really liked her, and i always think of her....so i guess we both just make each other think of good friends!

Hope you have a wonderfl evening!

Mary

Hello,

Rachel and Flop, I appreciate all of your feedback so much! I deffinetly think your right when you say there is a difference between naping and just lying in bed all day. Today I went with my mom to go shopping for some new compresion stockings and legging-ish things. I also got some cooler clothes for these hot days. After just one store I was beat and really needed a wheel chair, but the stores didnt have any so I slowly made my way through the stores sitting down about every 30 seconds, it was quite a drag. But hopefully now wiht my new stuff I will be able to bare the hot days easier!

I think I'm going to try elevating the head of my bead and see if that makes any difference. I also am going to check out those vitamens you mentioned because my doc. has me on a multi-vitamen for my vitamen-D defficiency, and if it has the required amounts I will try it! I am also going to start a food diary so that I can hopefully find what foods are bad for me.

Flop, I deffinetly didnt find all of your help like you were just preaching to me, it was very helpful and I really appreciate it. I have found that many times I will try and do much much more that my body can handle, and I totally end up paying for it.

Thanks so much for your feedback!

Have a great Memorial Day!

Mary

Good Morning Erica!

I am sorry to hear your feeling so icky, for me sugars dont affect me too much unless I eat a lot of it, but for me small portions are fine, which is good since I LOVE sugar! haha but I am also a teenager and we tend to like sweeter foods than adults.

The sleepiness may just be from the "sugar high" but it also could be from the pots. I think that how much of certain foods we all can handle is going to depend on the person, however there are some people here who can not tolerate sugars well.

Pickles are a great thing to eat for us pots folks. My nurse who deals with my treatment plan said that some people actually take the juice from the pickles and make it into popsickles! I know it sounds discusting but apparently it is good, I have yet to try it though.

Hope your feeling better!

Mary

Hey Ernie,

Now that I wont be in school anymore I think that I will start to try and do just that, get 12 hours of sleep each night. I sure hope it will help, I think it will too!

Thanks, have a great evening!

~Mary

Hello everyone,

Thank you for all the help, I read through the info on the "what to avoid section" as well, thanks Nina.

I think I have a much better understanding now of what things are going to possibly set off my symptoms.

Tammy, thanks for suggesting the food diary, I think that is a wonderful idea, and am going to start one!

I hope you all have a lovely evening!

~Mary

Hi Erica,

I have alot of concentration and "brain fog" issues too, I think that I will try reading, because I have alot of books I have been wanting to read, but I just didnt think that I would be able to remeber what is going on. But I think it is deffinetly worth a shot! Becuase I loved reading before I got sick, and hopefully I will find that I still can read and comprehend it.

Like you said its so great to have this network of people that can share knowledge and stories, it has deffinetly helped me, and I too am new here. But its great to have people who understand because dealing with so many people who dont understand why your always missing school, or when your there your always "out of it" and so on, it really helps to know there are others going through the exact same things!

Have a wonderful day!

~Mary

I have noticed that after I eat my stomach will hurt, and this is probably being caused from the blood pooling from the digestion process. But are there any foods that anyone has found are easier on the stomach than others? Or the opposite, being foods that you would want to avoid.

Any info you have would be a great help, because I would sure love to get rid of this nausea.

Also does wearing compression stockings that go around the abdomine help with the blood pooling problmes??

Thanks,

~Mary

I think that sounds like a good idea, because as long as I dont stay in bed all day my body shouldnt lose alot of like muscle mass and all. Plus if I use a pillow that props me up my body is the somewhat of an upright position anyway.

My doctors said I can have chocolate in small portions... haha because they really like chocolate too and they think that is just way to mean to take it away! haha and I agree.

Thanks for the reply!

~Mary

Since my heartrate is already so rapid, my doctors dont allow me to have caffene (as I'm sure yours dont either) They also dont want me to be napping during the day, as that is decondition my body more, and get it even worse at adapting to the upright position.

So I was just wondering if anyone has any ways to get energy when we already are so wiped out. These past few day ( I am thinking from the warmer weather) my symptoms have been alot worse but I also have been significantly more tired, and i am having trouble doing even the smallest daily activities.

Any help you have to offer would be wonderful!

Thanks,

Mary

Hello!

I am dizzy and lightheaded for most of the day, it seems to help when I lay down, but my doctors dont want me lying down during the day...which is really hard......but even right now just sitting down i am quite dizzy as well as the lightheadedness. However I dont know if there is much that can be helped other than the extra fluids and salt . But hang in there, hopefully things will be better soon!!

For the left side numbness, I dont have it on the left side mine is on the right, usually it will just be my arm and hand (hand tremors too) but my leg will randomly go knumb too. My doctors told me as well that it was just from the pots.

Have a great day!

~Mary

Hello and Welcome!

I am new here too and have found this site to be a HUGE help with just getting through the day, it helps me to not feel so alone.

I am sorry that I dont have any help for you with the toprol, however I do experience the migraines so I feel your pain!

Good luck with your job, I hope it works out smoothly for you!!

Once again welcome, and have a wonderful day!!

~Mary