GingerA

It is hard to do but I try to do some exercises everyday. I have to do things like yoga. The website www.doyogawithme.com had some routines that are suppose to be for seniors but work great for me. Not too much up and down. I can't walk a lot it tires me out too fast.

This is a great survey. I have been wondering myself about how where we live affects our condition. I had never heard of POTS before being diagnosed (except for it being the reason Greg left the Wiggles) but now it seems more and more people in my little town are having some sort of autonomic disorder. I just wonder if maybe there is some sort of pollutant that can trigger POTS and other things like it.

I have gotten better than I was six months ago. But then I did not have a diagnosis and had never heard of POTS so I was doing a lot of the wrong things. At that time I had trouble breathing, couldn't get out of bed much because I would pass out, and had EXTREME brain fog (so severe that I got lost in stores and could not find my way home or even remember how to call someone to come get me.) Now as long as I eat right and get some rest I can do things around the house and usually run errands but I am still not able to work. I was told at Mayo that I would be fine in six months but I am concerned that their definition and my definition of fine are too different things.

I have this too. I think it must be common for people with dysautonomia.

My field is Early Childhood Education so to be at home is difficult. But there are options such as research or teaching online classes once I finish the degree. I just applied for disability this week but was told that it could take up to a year or more to get so I am trying to think of anything else to do from home but many days I don't feel like doing anything. Its a big change for me because I was always very active. I know what you mean about grocery shopping. Sometimes its not worth the effort.

Hi Micheller, We have a lot in common I think. This thing has turned my life upside down as well. Like you I am taking classes online that were suppose to advance my career. Now I can't work at all so I'm not sure what my next move is. I have three children and I understand it is hard! But this site is a great place for information because most docs don't know much about this. Let me know if there is anything I can do to help you. Even just being there to vent! LOL Welcome to the site!

I think most of us here understand that feeling. It is terrible when you are so sick you can't get out of bed but there is no reason to go to the ER because they don't know what to do with you. That's what happens to me. Just keep telling doctors how you feel and be firm! Its your body. You know when something is not right! Hang in there!

You have convinced me Yuliya! No more ambien for me!

Thanks for the info!

Potsgirl, I was taking .5 mg of klonopin and it worked great for the sleep but like I said the next day I felt like my nerves were about to snap in half. I only took the Ambien twice. The first night I slept fine but the next night I didn't really notice a difference. All weekend I have been so fatigued and depressed. i just wondered if it was the Ambien because I have been feeling better lately until I tried to take this. Pulp, That was the effect that the doc was trying for. (Less side effects) but like you say you never know how a potsy is going to react to medication.

I just wondered if anyone else was taking Ambien. I am having a terrible time sleeping and had been taking a small dose of Klonopin at night but it made me very tense the next day so my doc put me on Ambien. I took it Friday and Saturday night but I have felt terrible all weekend. I was just wondering if any one else had this reaction or was it just a bad POTS weekend? (The weather is getting colder here too so I wasn't sure with one could be the cause.)

I agree with you Bren. I would love to see those drs. do aerobic and strength training in the same day. Also, what about the kids that don't "grow out of it". Many people that have POTS symptoms as teens have flare ups later in life. I think it can just sit dormant for a while and then affects you again like lupus or MS. But at least there is some media coverage. When it hit me in my teens everybody just thought I was either lazy or crazy!

Thanks Leize. I will try!

I hate that we are all having to deal with this but it makes me feel so much better to know that I am not alone with this symptom. Usually though I get really anger just before a bad flareup but since last night I have been so depressed and lethargic. My mom thinks that I haven't slowed down since my father's death and now it is all catching me. ( I do that sometimes. I'm ok during the time of stress but right after I crash for several days). Any tips to get out of this funk? There isn't any pain yet but my skin feels like it is starting to burn so I know its coming.

I have worn an event monitor several times. You wear the a small box in a small case that is attached to electrodes that are stuck on your chest for a number of days. Each time you feel flutters or just something strange you are suppose to press a button. The doctor reads the your heart rhythms and compare them to when you indicated that you were feeling something. The problem is that if you do not wear the monitor long enough to have an "episode" then nothing shows up and you are back to hearing that nothing is wrong with you.

A+

I recently cut gluten out of my diet and can see a marked improvement in the way I feel. I

I don't know what allergies you have but since I have been taken off of gluten I can tell a huge difference in the way I feel. The docs told me that I may not have an "allergy" but might have an "intolerance" to gluten. My nausea is very minimal and sometimes not at all. So far my pain level is very low. Low enough that over the counter meds can relieve it. That has NEVER happened before. Maybe you should try some diet modifications. It couldn't hurt anyway. I am currently off gluten and dairy. I am suppose to cut out sugar too but I am having trouble with that one!

You are lucky to have such a smart doc CMReber. After an attack of trachy in 2007 (my rate at this attack was 220 and this was for almost an hour) the doctor in the ER stopped and restarted my heart. (It is the most painful thing I have ever experienced and I have had three kids). Then sent me to a specialist who did an ablasion. This was before I was diagnosed with POTS and I am told it is a contributing factor as to why my POTS is harder to manage now.

I have days when I can go to lunch with friends or do the grocery shopping but it really depends on the day and the weather. On hot days (or very cold days) I usually am limited to the house. I am much better now than I was this time last year. At that time I was pretty much bed bound. I even had trouble breathing. Because I try to keep my activity and diet under control I can do more now.

Wow! this disorder just amazes me sometimes. I have ridges in my nails as well and they dip across the top if I don't keep them perfectly filed round. I just thought that was the weirdness of being me! I never connected the two things. Anyway, I also have a high hemoglobin (14) so I didn't think about anemia either.

Irish and German here too. With a little bit of Native American. Seems that is the norm. How much research is there about nationality and POTS?

The only thing I have heard is that there is inadequate blood flow to the brain but I wonder if blood sugar levels have a factor in the fog as well because so many of us have trouble regulating our blood sugar.

Just had to add this to the post because we have all been adding funny things but something happened to me yesterday that reminded me how dangerous this brainfog is. I got in my car to take the kids to school but it wouldn't start. Apparently the afternoon before I had forgotten to turn it completely off and killed the battery. I can't help but worry now that I might forget to turn it off or put it in park. I think I'm giving up on driving for a while. There was a time when I didn't drive at all but I thought I was getting better. I have been driving around my small town some now for a few months but maybe I'm not ready.