genie

Has anyone found any financial help for graduate school when dealing with health issues like POTS, fearing that I can't work and go to school? Just wondering if any of you have found any assistance or have suggestions for me. Also, will loose my insurance because I'll be moving and leaving my job and benifits and that scares me cause I fear I won't be covered with a new policy, at least for a while? Anyone been through this or have suggestions? Thanks!

I think we all can relate to the bad days and I too loved the analogy. In the words of one of my favorite artists Jimmy Buffett, who brings sunshine to me on rainy days "I've had good days and bad days And going half mad days" and "If we couldn't laugh we would all go insane"

OK, did anyone else have the visual that I did to Geneva's post about survivor, hey that would be a comical show, all of us with POTS on survivor in the heat - YEAH!! Actually, feel like I live on survivor most days! Just a funny visual to me

Yeah, wonder if we are all on the same cycle I've had tummy issues for a while but do find that when I over do it, like this past week that my whole body is out of sorts, esp the GI issues. I too use aloe vera juice and papya, high in sugars but seem to help for me. I also notice that I crave honey at times like this, peanut butter and honey?? Who knows? But interesting that we all have it

Yeah, I used to drink and drink and drink. It was crazy at how much water I drank. When I was finally diagnosed with POTS in the ER they had said I was dehydrated, they thought that was my problem and I thought if I'm dehydrated with all that I drink God help every body else I have been on ProAmatine for over a year and have found that I do not require the amount of water I used to and that I don't crave it as much. Still drink more than others but not like I did??

Very cool! Thanks!!!! I'm passing it along too

I take Biometics it's liquid vitamins that does help with energy, I started taking it years ago for migraine headaches. I have had my doc's look over the info and have given the OK for me to take. There are some products that with POTS you have to be careful with but have found what works for me. The web site is www.biometics.net/lifestyle

I, too, have joint pain and aches and pains all over. Have wondered myself if it was POTS realted or not. Glad to see the post. Let me know if the new stuff helps.

Glad that you have found someone that you and your family can trust! Good for you!!

Yeah, I do better on ibuprofin than on Tylenol too. Am very sensitive to most med's anyway but pain killer types are usually the worst for me anyway!

Do keep us updated on how you are doing. Yeah, I like the idea of the Guinea Pig Award - that's a great idea!! I think we all probably deserve it. My local doc always says you never want to have a rare condition cause everyone wants to experiment, the story of my life Hope you are doing better!!

Ok it's called gourmet spray salt you can find it at:

http://www.traceminerals.com/products/spraysalt.html

Good stuff!!

I will get the actual name from my friend, she gave me a little plastic spray thing that fits in my pocket book and it's liquid salt, I think called salt spray but will ask her, she found it in a health food store, so it might be sea salt spray, but it's great to spray on crackers or in your mouth, very salty but good for us to have! Will get back with you on the proper name and any other info she has for it.

Hugs from me too. Seems like when our symptoms increase it really throws us out physically and mentally. Seeing the doc will help see if there is something you can do to help. I know I've been fighting off a cold and my symptoms have been way out of wack, it's the little things that can throw us for a loop. Something?s I?ve found that help is drinking Gatorade and other drinks with electrolytes like they said before. My friend also found this spray salt, that I keep with me for emergencies, I know how sad to take salt around with you but seems to help when I need a quick fix. And rest, if your body needs it you unfortunately have to give in, I?m one that needs reminding of this too cause I push myself and then end up in bed longer than I probably would have if I had just slowed down. Keep in touch and let us know what you find out, sending good energy your way!!

Hello all,

Went back to the doc for my "tummy" issues and now he has decided I need to have an endoscopy and colonoscopy, just to rule out other causes than the autonomic disorder. I am still not sure that I want to go through this to "rule" out other issues, but he seems adamant that he wants to make sure it's not something else. I know several of you have mentioned that you've had these done but was wondering if there is anything I should be worried about, reactions, medicines etc.... Thanks!!!

I have had locals since my POTS diagnosis but have noticed that I do tend to be a little more lightheaded and that they seem to wear off quickly? Don't know if any of you also have this but the doc's have to then give me more cause I start feeling it sooner than most?? Might just be me, cause my dad is the same way so not sure if it's related to POTS or not??

Welcome, I too have the tremors usually only on days that my POTS is at its worse. Actually, today was a good reminder of how bad they can be sometimes, but now with med's I can get them under control. POTS is something you have to learn what your triggers are, like with me today, I know it's related to the cold I've come down with. Normal people although sick don't have all the other 'side effects' that those with POTS do, my bp has been all over the charts, high heart rate and tremors today, so.... The forum is a good place to gather info and support, so welcome!!!! Feel free to email anytime you'd like :-)

I was finally diagnosed with POTS about 2 years ago. The first time we remember my going to the doctor for it was when I was in 6th grade. The school nurse saw me in the hall backed up to the wall about to ?fall out? and called my mom and we went straight to the doctor, who at that time told us it was stress? So, I basically lived with the standing dizziness and occasional passing out. I noticed in high school that I would sit up on the couch while watching TV and would comment that my heart rate was very fast and shortly it would go back to around 54. So, I basically just lived with this until my heart rate stayed over 120 for 24 hours, usually after a while it would go back down and the doctor could never ?catch? what was happening. So, I called my doc and he sent me to the ER where they said I was dehydrated, now my friend who was with me laughed and said ?if she?d dehydrated God help the rest of us? Knowing that I drink LOTS of water. My doc showed up and sat me up in the bed to listen and my heart rate jumped from 80-120 and they caught it. They called in the cardiologist on call and he said you have POTS. Now, I did have mono a few years before and believe that it made my symptoms get worse, so am hoping that my symptoms may get some better, but have basically had it since I could remember? Sure hope this helps!!

That is great! I will be passing that along to my friends :-) Thanks I needed that tonight!!! :-)

I too feel like I'm a MD, cardiologist etc.. my friend and I joke with our families about that fact. I am lucky, or chose, doc's that are not scared of my researching what's going on. They have lots of patients and I have only one of me. I do take my list of questions in, cause the memory fails most of the time, but my doc appreciates the fact that I have researched med's test etc and suggest them. I was also told I have IBS, sometimes feel that's a catch all for "we are not sure" but... I was having such bad tummy and low back pain and have to say I did start the antibiotic and amazingly, am feeling better, back is about 90% better, so hey maybe the doc knows something :-) I always joke that that is why they call it "practicing physicians" cause they practice on you :-) Still having some tummy issues but will follow through and may asked about the MRI that was mentioned, that's why this site is wonderful, we share info!!!!! Thanks!!

I am right there with you on your frustration and the ?strike? I go on those as well, which I?m sure drives my doc crazy. My doc yesterday put me on antibiotics to see if it?s a bacterial infection causing all the stomach and intestion pain? Don?t like taking those but after a lively discussing I compromised and said I would try them. If this doesn?t help he wants to send me for the colonoscopy ? yuck?? What would the sonogram show? I?ve had the drink the white chalk stuff and have the CAT scan which didn?t show anything, had my gallbladder removed etc.. and still this tummy stuff jumps up and grabes me occasionally. Luckily most of the time I can live with it on the med?s but sometimes like the past couple of weeks it puts me in bed. Thanks for sharing and I?d be interested to know about the sonogram if you can share!

I?ve noticed this as well, when I?m asked to take those breaths I feel lightheaded. I?ve tried deep breathing and know it?s easier when I do it slow as well. I also used to take Tai Chi and my instructor would ask us to practice breathing and I noticed I would be a bit winded afterwards so.. not sure but I have similar things that happen too.

Hello again,

I saw my doc today and he said that the absolute highest my heart should be is 190, I am 29 so age plays a role in that. He said that would be 100% and he would like for me not to go over 80% max, thinking 155-165? He also wants me to try the beta-blocker that I have to take on days that I am having heart rates over 100 even on my regular medicine. He thinks this will keep me out of the HIGH rates, not sure how I feel about having to take the beta before exercise but may try it to see if it helps. I think I still struggle with the fact that I used to be very athletic and now have come to only walking most days, I tend to push myself??? Anyway, that's for all the posts, makes me feel normal once again with this abnormal disorder :-) Will let you know how it goes!

Yeah, the visual I just had of all us POTS on the floor made me laugh out loud - too funny! And you are right laughter is the best medicine.

I have noticed that when I have the energy to exercise and try to do something aerobic that my heart rate goes up sometimes over 200, I noticed that today and will bring that up to the doctor on Monday. Just wondered if any of you have had this happen and if or what the doctors have said about it? Thanks!