pink1975

Me too! Jumpy as heck.

"Unfortunately, the TTT is a modern form of torture" Absolutely agreed! That was one of the worst experiences of my life, but I finally failed a medical test, lol. I am not a fainter (other than a couple of times, both in the middle of the night when I got up to check on kids). I almost fainted during my tilt table test, but they laid me flat right in time to stop it. During my TTT, my heart rate shot up to 170 and my blood pressure was elevated (not sure what though, I got pretty confused) all in less than 60 seconds. The Dr. told me he would have lowered my sooner than 60 seconds, but the blood pressure machine took that long. During this very LONG 60 seconds, it felt like all of my blood was trying to exit through my feet.

I also feel better after a few drinks. I can actually do stuff like clean my house, lol. My thought was that it works that way for me because it is a nervous system depressant. I can tolerate only about 3-4 drinks however and then I get wicked crazy facial flushing that almost looks like welts that have very defined edges, not just red cheeks. No matter how many drinks I have, I am much more POTSy the next day, weak, shaky and lightheaded, regardless of whether I actually have a hangover (which I almost never get, even before POTS).

OMG, I just laughed so hard that I snorted! Thank you for the funny description, even though I am sure it wasn't funny at the time.

Mornings really are my toughest time. I hurt like I have been hit by a truck when I first wake up. I do have fibromyalgia too so not sure how that factors in. Most mornings I am really weak and have tremors. They are even worse if I have any type of physical exertion, no matter how slight, before I am fully medicated. This week has been tough. My legs have been so bad that I am walking like I am 100 years old and holding on to everything so I don't fall. Driving to work really makes them shake. I haven't had "adrenaline dumps" much in the morning, but did wake up with that a couple of nights ago. My brain fog is all the time, lol. The other day I went to my sister's for a barbecue and brought appetizers that were supposed to go on toothpicks. No matter how hard I tried, I couldn't say toothpicks, I kept telling her that I needed to put them on Q-TIPS!

I have worked at my current company for eighteen years so my boss has seen me suffer through the years of symptoms and finally the diagnosis. She has actually on various occasions: driven me to the emergency room, called the ambulance, called my husband to arrange pick up of kids, etc. There would have been no way to keep it from the company at all. I think that everyone should be honest with their employers, it helps the relationship to be honest.

When I first received a POTS diagnosis early this year I was relieved to have any explanation that made sense after suffering so many years without anyone to take me seriously. After researching POTS more I am finding that I have many symptoms that could be related conditions, namely hypermobility or Ehlers-Danlos as well as MCAS. I have been very flexible my whole life, and currently score at least a 4 possibly a 5 on the Beighton scale, with other minor criteria present. I also have odd episodes of flushing in my face and chest that are like fire, it is not all over but with very defined edges. My question is this: Do I pursue testing for either of these conditions? Will there be a different treatment required for either? I have three daughters, two who are at least a 4 on the beighton and one who scores at least a 6, possibly higher, based on my unmedical observations. They are all very healthy, with the only possible issue at this point being unexplained enlarged lymph nodes in the baby's neck and that they inherited my gluten intolerance. Is there any reason to be concerned about their health at this point if I don't follow up on testing? Are my issues possibly exclusive to POTS and I am being a worrywart?

I had a bad reaction to gabapentin. Also, recently tried zoloft, I had taken it for years and stopped when I got pregnant with my second daughter. At that time I had no problems with it. Five days of vomiting and dizziness before I realized it was the zoloft. I have also reacted badly to vicodin. I am on tiny doses of the meds I can tolerate (xanax and metoprolol) and weirdly enough those tiny doses are just right. New meds freak me out, never know how I will react.

Not sure if it makes a difference, but I also have asthma (diagnosed before the POTS) and I have taken my puffer thinking I am having an asthma attack and still feel the shortness of breath that I get from POTS. I am never sure if I am POTSy or having an actual asthma attack. I do agree that beta blockers make it worse. I have to closely monitor my lung function now that I am on beta blockers. I have noticed that I used to get a reading of 500 but after beta blockers it is consistently 450 or so on a good day.

I was diagnosed with Celiac two years before I finally got my POTS diagnosis. Going gluten free helped the GI issues, but not the POTS.

I have been deaf on one side since I was about 5 (from the mumps) so I don't actually have to cover one ear, lol but I can relate to the ear stuff. At the beginning of being sick I was sent to an ENT who diagnosed me with extremely sensitive ears (duh, I knew that) and gave me balance exercises to try to help with the dizziness. At this time I was battling daily vertigo and had a previous diagnosis of BPPV. Changes in elevation really mess me up, even elevators...we stayed on the 25th floor a couple of years ago and I could barely walk most of the weekend due to the dizziness. Anything more than a couple floors and I am doomed.

Me too. I hate this particular symptom the most. I do have asthma as well, but there are many times when I think I am having an asthma attack and my oxygen levels are nearly 100 percent and my peak flow is normal. It is maddening to say the least. I have noticed that personally I have the breathing symptoms a lot more when I am having trouble controlling my temperature and am suffering from feeling like I am freezing or burning up!

Oh my! Thanks for both recipes...I had no clue you could make your own! This is way better than buying it!

For those of you who drink Gatorade....Walgreens has 32 oz. Gatorade and the lower calorie G2 on sale this week for 5/$5. I was tickled. Plus, if you have both a Walmart and Walgreens in your area, Walmart will match that same price (I mention this because usually Walgreens runs out of sale items early in the week). Then, I went online to see if I could find coupons (I couldn't) but found that they make powdered Gatorade and G2 that you add to a 20 oz. bottle of water that comes in a case of 64 sticks (makes 64 20 oz bottles) that is 39.90 with shipping so it comes out to $.63 per 20 oz. bottle. You can buy the powder sticks at several places but I found them here: http://www.powdermixdirect.com/G2-Powder-Sticks-Full-Cases-p/fcg2800.htm?1=1&CartID=1

I am wondering about disabled parking for POTS. I think I have read that others on this board have been able to ask their doctors for a letter to take to the DMV to apply for a disabled parking hangtag. What are the medical requirements for this? Some days I am very ill and can't walk 10 feet without becoming tachy and feel like I am going to faint, other days I can walk as much as I want and have no issues. I usually know how the day is going to go based on the walk down my driveway to put the kids on the bus (which is about 200 steps). I say usually because some days I am actually feeling fine and then suddenly, not so much. This morning I was tachy at home, fine for the first hour at work, tachy and fainty by 10 am, better at 11 am and then ill again at 1 pm. (Is this randomness normal for POTS?) ANYhow, the point of my rambling is do you have to be tachy all of the time to qualify for the parking permit? What about not tachy but still feel like you can't walk too far? Now that we finally have summer here in WI, it is actually starting to get kind of hot outside which makes everything worse. I am still learning all of this since I have only been officially diagnosed for about 4 months. Thanks!

No clue what kind of POTS I have, my Dr. didn't say, but I am always freezing, esp. hands and feet. Hubby jokes that I am a vampire because I am so cold to the touch. I usually am bundled up when everyone else is warm. But I also occasionally get overheated so I am then peeling off the layers or one of the many blankets I have to have to sleep. I think I have had POTS for at least 13 years because I remember when I was pregnant with my first daughter and it was 90 degrees out and I was bundled up in a blanket because I was freezing.

Very inspiring, thanks for posting this.

My father in law just called. He went to the Dr. today and the nurse asked him if he knew me (we have the same last name of course). He said he had heard of me (lol) and why was she asking. The nurse said, "Oh, she's in here a lot!" Funny thing is, I have an appt. on Monday lol. His call gave me a chuckle on a kinda cruddy day (dizzy fun all day long and one near miss at the store when I stood up too fast).

My three girls are 13, 9 and 7. We invite their friends over for playdates and sleepovers a lot. This gives them the chance to be with friends and I don't have to go out. The friends ride the bus to our house after school on Friday nights and their parents usually pick them up the next day. We have activities, but my hubby drives most of the time so even if I do feel awful when we are out at least I don't have to drive. Also, when I am in bed a lot, my kids are in my room with me. Actually, the whole family just hangs out in my room just about every single night and most of the weekend when I don't have to drag myself to work. We do homework, watch movies, play games and even eat meals together. I was lamenting to a friend that my kids memories of me will always involve me in my bed! At least we are having dinner together every night, it is just not around the dining table, lol.

Yep, I am always worse in the morning. Can't say that I am always all better by afternoon, but usually improved over the morning!

Me too! Dizzy and spacey from deep breathing. I can sing still so that a plus since one of our favorite things to do is play Rock Band on our Wii!

I'm sensitive to chemicals and smells too. I use vinegar for cleaning. I have a spray bottle of vinegar that I put orange peels in so it doesn't smell so bad. It works to clean just about everything. I have to be careful with certain things like laundry soap and softener, nail polish, perfume etc. since the smells make me sick, but it is not all of them strangely enough. Certain brands are tolerable. Unfortunately, my daughters love perfume so I find the few that I can tolerate and give those as christmas and birthday gifts.

The UDI's GF bread isn't too bad. It does taste better if you toast it. If you want to have really delicious, although heavy, GF bread you can make it yourself in a bread machine. Doesn't have the sandy texture of commercial GF bread.

I like your analogy to poisoning, good point. My husband has a cold this week and is whining about how sick he feels. It makes me want to punch him in the mouth! He is unemployed and can lie around and feel sorry for himself when he is not feeling well. I went to work on New Year's Eve with pneumonia! I had just started antibiotics that morning, but I was feeling like ****. No sympathy. I think that you are not being spiteful for wanting people feel like this for 24 hours. Wishing it on them for a lifetime might be spiteful, but I think 24 hours is reasonable, lol.

Mornings are the worst for me. I struggle to get out of bed and then struggle to get to work. I am dizzy, shaky, weak and zappy in the morning and then as the day progresses I feel more functional. I do get a crash in the afternoon where I feel like I am going to just drop into a deep sleep no matter what I am doing. I push through it until I get home at 4:30 or so. When I get home from work I often need to lie down for a bit before I can cook dinner or anything else. I also have fibromyalgia so I think the combination of that with the POTs is what makes my mornings so tough. I am not on beta blockers yet, not until April when I see my Dr. again.