potsyturvy

Thanks for the input! I went to the dr who would do the surgery under sedation with local anesthesia yesterday. By the end of the visit, he decided he would try the septoplasty with local anesthesia and Afrin instead of epinephrine. I had a balloon sinuplasty and fracture of turbinates done under local anesthesia only and it wasn't too bad. He doesn't think this will be any worse and could be a little easier because he would be using a much stronger anesthetic. Unfortunately, today I went to my immunologist and she wants me to postpone the surgery several months now until I have done some IVIG treatments I'm a little frustrated, I just want to get this surgery over with!

I'm going to have a sinus surgery done soon, and much to my dismay, my doctor is saying I can't have it done with local anesthesia only like last time, with a more minor surgery. So, I have the option of doing either general anesthesia with local anesthesia or sedation with local anesthesia. I would be using a different doctor for either one, and the doctors are really skilled at doing the surgery with both of these options, so it's really just a question of what would be easiest on my body. Any opinions?

Reading a book outside in the sunshine when possible. Cuddling with my dog. Riding with a friend to get a "treat" aka some type of ice cream, cookie, or Sonic beverage. Buying fun stuff on Amazon with giftcards I get for doing online surveys.

Glad you are starting to feel better! How frustrating to get something like that on top of POTS. I am keeping you in my prayers!

I color sometimes too Corina, although I usually only have cheapy coloring books. I like to read also, and if it is warm enough outside, I love to lay out in my hammock and read. I love doing puzzles also. I only do 500 pc ones and I'm really picky about the picture and the quality of my puzzles. I have two indoor plants that I take care of, and although it's not much, it still is fun to look after them lol. When I feel good enough, I like to weed the garden and water outdoor plants (I love being outside!). I also draw (not very well) and paint. When I feel good enough, I bake and enjoy cake decorating and have recently learned some sugar art. I have ADHD so it drives me crazy to do nothing. I hate when I'm too sick to do anything at all (but can't sleep), so I usually at least attempt to color or play a game on my Ipod.

Glad it's over and hope you recover quick

Julie, I literally laughed out loud when I saw that psychiatrist told you that had a "standing phobia". What a ridiculous thing to say! I don't blame you for crying, I have cried at appointments when my doctors say stupid things like that too, unfortunately, I think it makes them think even more that I have a psychological problem. I went to an endocrinologist who told me that all my family and friends need therapy too for letting me "pretend" to be sick all the time. He changed his tune a little bit when I almost kicked him in the head during the reflex test due to my hyperreflexia (I so wish I would've kicked just a little higher lol!), but it still ended up on his final report along with something about how I needed to relax in my gymnastics room ( I have no idea what that means either!). After I read the report (which also said at one point that I'm a male.... umm, last I checked I was female!!), I decided that maybe the endocrinologist needed to see a psychologist because most of what he said didn't make any sense. Oh, and I got a call from him a few days after that appointment saying my lab results came back (that I begged him to do!!), and my Vitamin D was a 15. I also hate it when doctors think you shouldn't be anxious about something that makes you feel horrible. I had a VNG done to check for causes to my vertigo, and the doctor told me I have really bad anxiety because I was really anxious whenever I had horrible vertigo during the test. According to that doctor, the room spinning rapidly around and getting nauseous from it is not cause for anxiety. I wanted to strap him in a tilt-a-whirl for a couple hours to see how calm he would feel!

Also, when I told doctors I was having panic attacks, a lot of times they descredited my other symptoms that had nothing to do with anxiety. According to multiple doctors, I didn't have recurrent sinus infections (I have a SEVERELY deviated septum), vertigo, GERD, or multiple other issues, I just thought I had those issues because I was anxious. Partly, I've got to think those were just really lousy doctors to not have looked at my tests that proved that I had those issues, and to blame everything on my "anxiety".

Julie, I totally agree with you, however, I found that if I told a doctor I had panic attacks along with my POTS, they would only latch onto my saying I have panic attacks and try to send me to a counselor (I've been to several counselors and psychologists, all of which said there was something physiologically wrong causing my panic attacks). While I agree that they were truly panic attacks, I found it easier not to call them that when I was at a doctor's appointment. It was usually better for me to say "adrenaline rush" or just to describe my symptoms so that they would actually run some tests and try to figure out what was causing the panic attacks.

EDS can cause dental problems. I have enamel erosion, but I have cavities almost every time I go to the dentist. I have read that with EDS you can talk to your dentist about having more frequent appointments which can help. I use an electric toothbrush and a high fluoride toothpaste that I got from my dentist. I also had tons of plaque on my teeth, I don't know if you have a problem with this or not, but I figured out it was because I was breathing out of my mouth when I sleep at night. Once I started wearing BreatheRight strips, it cut down on the problem a lot. My sister also has EDS and she has really bad problems with periodontitis. As far as I know, the best thing we can do is keep going to the dentist regularly and pray for the best!

After I had my ingrown toenails removed (the doctor used epinephrine), I started having horrible Panic attacks and panic disorder. It took me over 6 months to get it under control enough to be able to leave the house. I take Celexa 40mg, which has helped a lot. I also found out my vitamin d was very low and it helped my anxiety a lot when I started taking supplements. I still struggle with some anxiey, but at least the panic attacks are under control. I think a lot of POTSies have anxiety issues, a lot of them I think are just due to having such an unpredictable chronic illness and I think some of it could be due to our messed up sympathetic/parasympathetic nervous systems.

Aw, don't feel like a wimp, even things that shouldn't be a big deal can be pretty rough when you have POTS to go along with it!

I know a lot of you have problems with allergies and sinus issues, has anyone had a septoplasty done before? I have tried everything to avoid one. I did chemical cauterizations on my turbinates, tons of different meds, air purifier, neti pot, and recently a balloon sinuplasty of my left maxillary sinus and outfracture of both my inferior nasal turbinates. I had some improvement from the last sinus surgery, but I'm still struggling with infections. I have a severely deviated septum (which is why I couldn't get the balloon sinuplasty on the right side) which touches the side of my nose. I have been told for years that I'll eventually have to have surgery for it, but now even my ep-cardio is saying I need to get the surgery as infections make POTS flare worse. So, my ENT only does the surgery under general anesthesia with Epinephrine and cocaine both of which make my heart rate go up really high. He referred me to another ENT who does the surgery under local anesthesia with light sedation. I'm not sure if he uses epinephrine or not, but I plan to ask him before my appointment to talk with him. I have to choose between these two doctors, so I'm wondering if anyone knows which is easier on POTS patients, general anesthesia or sedation. I did the balloon sinuplasty and outfracture of turbinates with a local anesthetic through a nasal spray, so I was wide awake through the procedure and I did fine (except for the recovery for the next couple of days.. that wigged out my POTS). I kind of wish they could just do this surgery with local anesthesia only, but I know they won't

I've had lots of minor surgeries under local anesthetia only. Personally, I find that if I make sure they do not use epinephrine, I do SO much better and am WAY less likely to flare. I have had them try to use epi even after I have asked them not to, but I've learned that if an anesthetic has epi in it, it is usually in a red container while if it doesn't, it is in a blue container. Hope it's not too bad!

I wonder why so many of us struggle with UTI's? I get them all the time. I usually don't even know it, because my only symptom is lower abdominal pain, which I usually attribute to GI issues, but almost every time I give a urine sample at the dr's or ER they tell me I have a bladder infection.

I like to crochet. It can get exhausting if you do too much of it, and if you have EDS, it can make your wrists really really sore. I got an Ipod Touch and when I feel lousy, I'll just sit or lay down and play games on it to distract myself.

It's a Shark. We just got it at Walmart.

I bought an air purifier for my room. I have to change the filter every three months, but I notice a huge difference in how often I have to dust in there compared to the rest of the house. I have lots of allergies, but my main priority is keeping my room clean (it gets cluttered, but I'm talking dirt/dust clean) since that is where I spend 10 or so hours a night sleeping. I wash all my sheets and blankets once a week. I live with my parents right now, but I try to help with cleaning. I love the dust cloths because they seem to pick up so much dust and don't leave smells or residue behind. I try to make sure that at least my room is vaccuumed most of the time. Katybug, we also have a steam mop which is awesome at cleaning hard floors. I have a hard time with vaccuuming, it is absolutely exhausting for me and I can't clean the bathrooms because of the chemicals, my family does that and I try to avoid the bathrooms until they air out. I find that if I keep the house and especially my room clean, my symptoms are better controlled, but I also have lots of allergy and sinus problems, so that might be why.

I can't think of any extra expenses that came up with my first appointment with him. He is a great doctor and I hope your appointment goes well!

I have hypovolemic POTS. I feel worse if it is very hot, but I also have Raynaud's so I can't stand the cold either (and cold for me is 65* or less lol!) I do best when it's between 70 and 85 degrees. (Maybe I should move to Hawaii?! )

I was so glad they didn't use the term "Grinch" in the news report. I felt like it could have been better, could have been worse. At the end, one of the reporters stated that not all POTS patients have small hearts or are deconditioned, though I can see how the casual observer would arrive at that conclusion since most of the segment was about the subset of POTS who have small hearts. I am excited that we are getting some national news coverage. Hopefully, it will encourage other news stations to do more in depth segments about POTS.

This was really well put. I love this forum. It is so great to know that we're not alone!

I agree with you McBlonde. Too many people do laugh it off, when they could have POTS or bp issues. The tilt was a just a really quick picture when the lady was talking about having tests done. It didn't have anyone on it or anything. I was just shocked to see one at all! I am really excited about the episode tomorrow, I hope it's not too disappointing

I watched it. It was really short, but at least they showed a tilt table lol. I'm curious though, because I saw a clip from another show they're going to do about astronauts fainting and it way made me think of POTS. I want to know when that one is going to be on!

I have a cough that has been going around. My family all has the same cough and my parents both went to the doctor for it. She said it can take 6-8 weeks to get over it. Right now when I go through a coughing spell, I get really lightheaded and bad presyncope after coughing. Since I may be stuck with this cough for a while, does any one know anything that can help with the presyncope? Has anyone else heard of this happening before?