WyomingGal

you do what feels best to you! if it doesn't feel right, maybe you could plan something with them after the zoo, like a bite to eat, etc so you can feel more comfortable.

I posted something similar about the midodrine. I started taking a half dose of what I usually take for my lunch and late afternoon doses. Then my chest hurt sooo bad, so I took the regular dose again and it feels ways better. There is no way someone can convince me, for my own body, that I will not have a withdrawl from something that I take three times a day for the last 3 years. I did have to stop my midodrine for my TTT in February 2011 at Mayo. It wasn't fun, but I was able to continue my salt and fluids. I was on .1mg fludrocortisone too, but they did not have me stop that because I think you need to slowly taper off that in order to keep you adrenals from freaking out. I failed my tilt miserably, last 4 minutes (and I don't pass out). I was shaky after, but resumed my midodrine and visited a couple of small shops in Scottsdale. I was glad my mom was there to drive me around. The tilt gave me lots of answers about some autonomic neuropathy,etc. Don't worry! You are only going to get answers from all of this! Try to get up slow, and stay hydrated next fews days. Also, if you use compression stockings maybe you can wear those to take the edge off. It's your life and you have to do what is necessary to be functional and feel better...you deserve it! You may feel nervous, and I understand, but it is also exciting to get some more answers! : )

this is one of my main symptoms! my dizziness seems to be the worst in the morning. Sometimes I wonder if even though the midodrine bumps up my BP, it also makes me dizzy. I am on some medications that can cause dizziness, but it came on strong about a year ago. It has gotten better so very slowly. I think it's just a benign annoying symptom. I also can't go on swings anymore which is weird.

i tried lowering my lunch and afternoon midrodrine doses from 5mg to 2.5 mg, and I think I just made the connection that it was making my chest hurt. Guess it wasn't getting enough blood to that area on lower dose, or can you have a midodrine withdrawl of sorts? It is like my sternum is sore and bruised. I always hear people talk about chest pain on here and I wasn't sure how they feel it.

yes!! or fluorescent lighting. I feel so much more comfortable at home or outdoors. But I also feel like my anxiety plays a role, too. I chew gum and stay try to stay focused on one thing. Like only my table or place setting at a restaurant, instead of surveying the room and getting overwhelmed. Also, at a big store, i look at the ground sometimes, or my phone every once in awhile to get focused.

I take my largest midodrine does an hour before getting out of bed to kind of set me off on the right foot for the day. Also, I take my largest salt load with breakfast and lots of water! In a hour or two I feel like things are working like they should be. I have also heard drinking a large glass of water about half hour before getting out of bed to hydrate you.

i didn't admit it for awhile, but compression stockings are amazing!! I have been wearing them on and off for a couple of years (30-40mm). Now that my thyroid is stabilizing a bit, I have been wearing them a little less and just got a pair with lower compression because I have been getting some high BP readings. They really gave me much more energy, comfortable standing time, and less fatigue.

I haven't had my sodium levels tested in over a year...is that okay if you are on florinef? When do you get yours checked?

After reading on this site and doing some research, I told the dentist that I have tachycardia and need to medication without the epinephrine, even though they will say it only has a tiny amount in it, i just say no thanks. I used to get whatever their regular stuff is before POTS, but haven't since, and have had 3 procedures with the non-epinephrine numbing medication in the last 6 months and everything was fine. I did have anxiety, but that's just anxiety. I always treat myself to a nice iced coffee or mocha, etc afterwards as a treat!

I do get sick a lot, but less now that I am working on building up my immune system with vitamins and probiotics. I know people have said this before, but I do notice that my actual POTS symptoms are better when I am sick...so in a very weird way, I guess i kind of don't get too mad if i have a cold, etc because at least I can attribute my symptoms to an actual virus, etc and not just my body being weird! Plus my orthostatic intolerance and hypoglycemia feelings get a bit better!

As you know, we are all sooo different. I took 2.5 mg of midodrine for the first time a couple of years ago and my doctor had me come back in an hour to see how I felt and check my BP, etc. I immediately walked to lunch a couple of blocks from the doctor's office and felt better than I had in months! I am still on it today. I didn't really get chills, but that goosebump feeling, itchy head, but it subsided and now I rarely notice it. Maybe starting really really low would help, but let your doctor know of your concerns and maybe you will feel better about whatever decision you make.

Alaska, So glad you brought this up! ha I get nervous too. I think part of it is anxiety because I am in a public place, technically stuck there until it's over with your little cape on. Also, I do find that after i get my hair washed I do get up slower, they are always like "okay, all done" and I slow it way down and sit up get my bearings etc and then go to the chair. Also, my hairdresser is always like, uncross your legs (i think it can throw off the the cut) and I always think, "No!" but i do it anyway for her : ) Maybe we also are more sensitive to stimulation, so someone brushing your hair can flare you up because it can be a bit painful sometimes. I keep tensing my calf muscles. It is so true that you have to be so still and i am not use to having to do that, so it maybe makes me a bit symptomatic, but also anxious. I also never let them dry my hair anymore because I just want to get out of there because I am uncomfortable and sooo bored!

Congrats to you! Glad you are really truly enjoying each day! Thanks for sharing your positive stories. Keep 'em coming! I can't wait to start my garden either. Maybe you have mentioned before, but what do you think it is now that has really pushed you to another level? Is it just time, you are healing?

I saw a movie a few weeks ago, The Notebook : ), and thought maybe some people could relate to this feeling... When the movie pans from one person's face to another, so they are kind quickly going by everything in between those people, i kind of got dizzy/uncomfortable. So I would look down or close my eyes. Anyone experience this? It doesn't happen at home, but that is probably because it way smaller screen and movies generally don't pan at home, they just cut from one face to another.

ok-not the most informative article, but it is people magazine. it's a start!

Didn't know if anyone has seen it yet, but there is an article about Greg Page from the Wiggles in the April 2nd issue! I haven't even read it all yet, but wanted to share with everyone and tell them to go pick it up...i feel like this is huge!! I am so glad he has shared his story!

Has anyone heard of or tried this water filtration system? you can check it out at www.alkastream.us It seems like something that would be interesting to try. I also wonder if it would help with the body's healing process and getting O2 where it needs to go. I know I buy a lot of smartwater, and really like it. Just looking for anyone's thoughts/experiences. Thanks!

This thread is so interesting to me! I also have high EBV titers, and have for at least a year that I know of. When I first came down with "POTS" they thought I had mono, and I said I already had it a few years prior, so I don't know how long it has been activated. Over the course of a year trying to treat CFS, I do feel much better, but my EBV titers are not any better. One was even higher, which indicated a recent infection. Turns out I was NOT suppose to get the flu shot and somehow didn't know that and it probably caused that slight flare because my immune system just needs to work on the EBV, not trying to make flu antibodies, too. The doctor who is working with me has been dealing with EBV for 20 years and has not suggested to me to use ant-virals. I would love to hear your experience though if you choose them!

i just started going to the gym (well only been 2 times) even though goodman told me to exercise over a year ago. Now that my thyroid is better and i have been building up my immune system i feel ready to tackle the gym. I too notice that after exercise I am sooo calm and at peace, its was such an odd feeling for me! It is kind of addicting. Doing recumbent bike and weight machines, and try not to exercise more than 20-25 minutes, because I don't want to overdo it. I get more tired that day, but the next day I do have more energy.

I love this and horses, thanks for sharing! There's something really neat an mysterious about human-horse relationships.

I have bad fatigue too. A chiropractic doctor has helped me so much because she recognized some of my symptoms as what she went through when she was younger. I know POTS causes fatigue, and she was way against a beta-blocker since it can cause fatigue. The tachycardia never bothered me too much. Also, I have high titers of the epstein barr virus, which makes sense that I am tired because I am fighting a battle inside my body. I rest and try not to push it, because I will pay for it if I do. Also, take a lot of vitamins to support my immune system and cells. Light exercise helps too and helps me to sleep better.

I am 26 and in the same boat. I was actually glad to have hypothyroidism because then it gave me more hope. I was so tired and my orthostatic issues were bad, etc, so it was exciting to start giving my body something that is so important so it can start to function properly and move forward. I tried levoxyl but felt too weird, knew within a few days. I am now on Armour and love it. My TSH has dropped, it's only been about 4 months of treatment, so I am hoping that things will continue to get better and I can just focus on my POTS.

I would try to start to slowly sip some pedialyte.

I was wondering if anyone could share what is high blood pressure for them. I have been on thyroid medication for almost four months and my TSH has gotten better. I noticed today that I was extremely dizzy. I took my blood pressure at home and it was 123/87 with a heart rate of 75, and that seems so high! I had my compression stockings on as I usually do so maybe that was it, but just took them off to see if I can get some relief. Also, my first midodrine does was wearing off, so why was it still so high? Does anyone notice they get high or higher blood pressure and it actually makes things worse? (Maybe I am getting better-positive thoughts!)

How often do you check in with your POTS specialist (mine is at mayo) I went to Mayo about a year ago and don't know when or if it would help at all to check in with my doctor face to face...I have only seen him once.