Jenn202

I am wondering how many of you retain fluid in their tissues on and off? I can retain fluid there even with hypovolemic symptoms... I can put on 5lbs of water weight and lose it all over night. dr Grubb explained this by saying that it was "leaky Veins" and Part of my collagen problem, but I am wondering how many with POTS get this? It is my biggest problem... I am seeing a cooagen specialist soon for a second confirmation.... Thanks!

I use Zicam when I am comming down with a cold and it usually cuts my cold in half.... I carry it around with me to get it right away if I feel a sore throat. Maybe this can help you...... I dont do well with cold meds either... I usually use steam with tea tree oil.....vick vapor rub..... Maybe a childs cold medicine might be ok for you? Feel Better !

Hi Ling - I'm not sure if this is ok for pregnancy so ask you dr, but I use Electromix made by alacer...it has no sugar in it...just the essential electrolites to add to water..... I know you are outside the US but you can order it from www.vitacost.net or go to www.alacer.com Maybe you could also ask about adding some "good" salt such as celtic or himalayan sea salt to your water as well..... I hope you feel better!

I also have Medicare A and B but they are my secondary b/c of my husbands insurance..... Although I will be switching it to primary soon b.c of a job change with hubby... I would think that Pregnancy would be covered since they cover hospital expenses and OB/gyn visits... Glad you posted this b/c its a good thing to look into for any of us on it .

Have you been tested for active HHV6 virus? This virus lives in most if us and is what causes cankor/cold sores... if you have ever had chicken pox or shingles that is the virus... For most people this virus lays dormant unless you get a cold/or stress and a flare happens. Anyway, many people with chronic conditions can have a permanently active virus... This virus is systemic and when active the sores will be in your throat, stomache etc etc...causing the swollen glands. I tested positive for active HHV6 b/c I have Lyme Disease... I take a daily antiviral to keep mine in check. Its a thought maybe you can bring up to your Dr. Take Care.

I just wanted to bump this topic up.... I think Calypso was trying them??

I know a couple of you were going to purchase some... I just recently bought some for myself but havelt tried them yet...... If any of you have tried them can you let me know how you are doing on them? Also how you take the seeds and what amount? Thanks!!

I just got back from my POTS Dr this week. He "claims" that Mestinon wont cause ANY side effects other than stomache problems... And that everytone who says they are experiencing other sx such as weakness etc etc is just from something else???????!!!!!!!!!!!!!!????????!!!!!!!!!!! I was NOT happy with that explanation!! I am still riding the fence on this med, but it looks like I am on the do not take side as of now..... Have you called your POTS dR and told him what is going on? Maybe he will have some insight... You have lots of courage for trying all the meds.... If this one does not do the trick I am sure something else will help better. Keep us posted

Hi Sef - I brought all my autonomic testing as well as all the blood work and write ups from others Dr's....... Its important to be prepared with all your questions and needs so you dont miss anything. I waited to see Him for about 7 hours... but it was well worth it for me... he gave me a lot of time..about 2 hours... Explained in much detail about dysautonomia, and gave me an exam, and his personal opinions on what he believed was going on with me specifically. He went through different med options and was happy to work with my POTS Dr in Boston...... I woud address each question you asked here with him so that he can help direct you. Good Luck with your appt! I think you will have a good one since he is such a dedicated man.....

I just wanted to add that electromix is 8.49 a box of 30 at vitacost.com It lasts me for almost a month since it only takes 1 packet to a liter of water.... It smuch cheaper than buying bottles of sports drinks and also is better absorbed.....

I have learned that the sugar and ratio of the other electrolites in sports drinks like gatorade can actually take a person more energy and longer time to digest in the stomache ...... I have found electromix which does nto contain all that sugar that causes that problem..... I mix some seal salt in it and it works well for me.

Hi Jacquie - You can apply for a Pell Grant which is a Govt Loan you do not have to pay back if your financial circumstances make you qualify. There are also student loans and and other types of grants and scholarships that you may qualify for as well. Any college that you are interested in attending would be able to help you sort out which type of finacial help might be best for you.... Just go to or call their financial aid dept...... I hope that you get some answers and are able to go to school... Good Luck to you

I only get into it with my immediate family as far as ALL t he details.... My husband, parents and sister know it all, but I never really talk about it with others... If somene asks me how I am doing I just say " doing good" I try not to focus on my day to day health situation as much as other parts of my life.... I just feel that giving out the weekly details to friends and aquaintences are not worth it..... It took a while to get to feel comfortable with feeling like this, but I have no problem saying no to someone if I dont feel like doing something, and I dont ever feel I owe anyone an explanation for anything I do in life. Believe me it took time to get there, but I am glad I finally did

Thank you for the replies! I know that meds are so individual so its hard for us to predict..... I am still thinking about it...... Will bring it up to my POTS DR this week also...... Thanks again, it helped to hear how some of you did/are doing on it

I know Mestionon has been discussed a lot on here lately but I am wondering who here specifically experienced muscle weakness while taking it? I still have not tried it b.c for some reason my gut keeps telling me not too. I have very strong leg muscles and work out quite a bit and cannot and do not want on any level for my muscles to become weak.... The side effects just seem so scary. I see My POTS dr this week so I will run all this by him also, but just curious about this reaction? Oh forgot to add I have an ulcer which effects me frequently... and I know this can also cause stomache problems?

Hi Momdi - Absilutely you can do lower body.... You can do all kinds of variations of sqats and there are extentions as well for lots of different angles... My legs are almost more musclular now than when I was a runner. The great thing about it is that when you do the sqats you have perfect form and are in a reclining position so you can really focus on that body part without having to worry about the bP thing. There are different variations on the Total Gym.... The one I have is called the Total Gym 700 club which I bought on Walmart.com QVC also sells the same thing for a bit cheaper and I know that QVC has their 30 day money back guarantee so I think I owuld buy from them ... For me it has been so great. I have spent so much money on different eqiupment through the years and this is one thing that I use religiously.... Its great b/ even on a bad day you can find excersises that are tolerable...

I use a Total Gym and I LOVE it! I have been doing weight lifting for years now but could never get in too much at once due to the fact that I had to stand and change in BP and Blood pooling etc... With the Total Gym I am at an incline, which allows me to do so much more and different forms of strength training along with cardio withouth having to be standing... It is also used for Pilates as well.... I have increased my muscle mass even more since starting to use it last year. It works for all levels of fitness.... Mu husband who is a Police officer and works out with heavy weigh training uses it when he doesnt feel like going downstairs to our Gym..... ALso it is so inexpensive compared to other gym equipment on the market......Mine was $260 brand new.... I know that Nina has a Pilates Performer that is similar to the Total Gym.....

I just wanted to let you know that I am able to get home Iv fluids and I am never "technically dehydrated" Dr Grubb understands how POTS effects this part and I think would be very willing to help. Also I got a Home Health facility to do it not visiting nurses b/c they are the ones who seem to give the hardest time. I am not sure what Part of the country you are in but Chartwell is who I use and I know they are in quite a few places. I really hope you can get the fluids at home. I know for me it makes my life a million times easier and I am, so much more functional as well as able to tolerate being sick easier. Ihope you feel better soon

I also think since our autonomic systems are in charge of the "fught or flight" response that it could very well bring on a panic attack.... Thats just my personal opinion but Iwouldnt count it out.

www.watercure.com is a pretty good site if anyone if interested. The problem with most main stream Dr's and their thinking is the belief that being thirsty is the sign of when to drink fluid when actually by the time you get to feeling thirsty your body has already started the process of getting dehydrated.... Hydrating at a cellular level is what people should aim for , and their is a delicate balance between taking salt and water to keep those levels in check..... Good salt such as Celtic, himalayan salt is the type your body needs.... My aim is to always try and not get to the point of utter thirst....usually by then I find myself not feeling well.... Not always easy to do, but I shoot for it!! LOL

Thanks for the links. It looks similar in make up to celtic sea salt which I take.... I felt better after stopping the plain sodium chloride tabs I used to take and I replaced with the Celtic Salt...... I think its a great idea!

Thats great news to hear! Thank you for sharing it with us..... I asked Dr Grubb the same question when I saw him last year and we talked about it length.. He feels the same.... And he usually treats with meds when the benefit outweighs the risk.. He said he has had MANY women have sucsessful pregnancies .....

I average about 3 to 4 liters a day, BUT I make sure to balance out my sodium ratio with the water so that I do not flush important electrolites out... I take at least 1/4 tsp of Celtic sea salt to every liter of water I drink..... I also add electromix to my water for the electrolites in it...... You can get this at most health food stores..its made by a company called Alacer....

Bamagirl - If you do have Lyme Disease I can tell you from my own personal experience that I was completely bedridden , housebound, and sicker than I ever thought was humanly possible..... After many years if tretment I finally have recliamed some of my life, but I went so many years without proper diagnoses that it is still a battle,,,,although I am, about 80% improved. I would really urge you to see a good Lyme Dr.... The POTS cannot get better unless the Lyme is treated if that is indeed what is going on with you... Take Care and I hope you feel better

Luckygoat - POTS is usually a problem brought on by something else. If you even suspect you have Lyme I would see a good LLMD asap.... Lyme is what brought on my POTS.... Without antibiotic treatment for Lyme and coinfections I have no idea what state of health I would be in right now... Feel free to email me if you would like jljlc@sbcglobal.net