azmusiclover

Bebe, I get the bruised feeling often. I joke with everyone that I bruise if I get breathed on. I hate the deep in the body bruising feeling though. I currently have it in my back on the upper right side of my ribs after sitting in the massage chair at the pedicure place and having the chair massage me. I think it bruised me. LOL. I don't get the itching after exercise, but I do get it after heat exposure and I will often wake with scratches on my body from itching during the night. It's been less since I have been taking my claritin/benadryl combo but they don't think MCAS for me.... I am still thinking of pursuing it outside of Mayo.... It is all confusing and just when you think you have something slightly figured out, something else pops up or happens! Oh, and I won't kick you. It was in the 90s last weekend and beautiful low 80s this week!

My gallbladder didn't have any stones either! But, when they did the function test, it came out at 0%. So it just quit. When they took it out it was disgusting looking. (I have pictures) It hadn't been healthy for a long time. My weight loss actually happened after I had the gallbladder removed. My body didn't adjust to the loss even though it quit working. Strange. Issie, I tried some enzymes prior to all of these issues several years ago, didn't really notice much difference. I do use probiotics on occasion. Are there specific ones to try for these kinds of issues?

I used to ski all the time when my POTS was in "remission." I didn't even think that it would be an issue until last fall and we went from Phoenix to Albuquerque (which was fine, even at 5500 ft) and then the next day we went to the top of Sandia Peak. It's 10,000ft. After 10 minutes of walking around, I got dizzy and felt really bad. We had to quickly get down under 8,000 and then once we got back to the house (my MIL lives there) I spent the afternoon in bed. I was able to be up and about that evening and the next day. I hope now that I am less symptomatic I would be able to ski again, because I LOVE it. I would say go for it and just listen to your body. Have a great time and let us know how you do!

I'm in north central Phoenix. How are weekends for everyone else? I'm open, depending on various appointments with the kids but I can get away most of the time.

Seems like there are several of us on here from AZ. I'd love meet up in person but I know it can be hard to schedule things given how day to day things are. Is anyone interested in getting together as a group? Or even setting up like a quarterly meeting, maybe getting someone to speak or taking turns sharing stuff? Lunch, coffee? Just throwing it out there

Ash, I have been on the diet itself about 6 months. But, before I went on the diet, I had pretty much stopped eating, save for soup and crackers and cheese. I really think I had an ulcer too that was causing a lot of the pain. Everything needed time to heal up, especially since my surgery in 2011 for my gall bladder. I do cheat and eat some things I "shouldn't" as I feel better. When I push it, I get constipated and have some pain, so I know to back off. On days where it is really bad, I just do liquids or soft foods and give my tummy a break. I have also experienced the issue of eating the same thing being ok and then all of a sudden it's not! So frustrating. I have completely cut out any darker sodas. I drink water water water. Occasionally Sprite. Ginger Ale. White wine. Vodka (if it's a really good day) I am feeling better. Last year was very rough. I'm slowly pulling out of it and being able to eat more. Have you lost a bunch of weight? Most docs don't know what to do with GI stuff, and most GI docs just want to scope you and diagnose you as IBS when they don't see anything. (not all docs, just my experience) It was Dr. Goodman at Mayo who had me see the GI to test for the gastroparesis. It was crazy. After 4 hours, I only had 59% of my "test meal" that had fully digested!!!! Referrals tend to be insurance based. If you are PPO you should be able to self refer. I would keep a journal for a couple of weeks, note the food, how much you ate, how you felt, any symptoms (gas, bloating, etc) and then show it to the doc. Good luck!

Sorry you got stung Dani. At our old house in Gilbert we had TONS of scorpions. Hubby would go on black light hunts every night. He'd smash them with a hammer. This was after dusting and spraying monthly. We moved in Sept to a different part of Phoenix and have not seen a Scorpion at all. Thank God. We did however have raccoons in our backyard on our patio! (in the middle of the city) and we have a coyote that lives in a wash near us. We should have an Arizona meeting. Seems like there are quite a few of us on here.

Yes Angela, I am supposed to be on the diet long term, like forever. But there are foods that I miss and I'm underweight so I am trying to eat things on days that I my tummy feels better. I feel like it's worse in the am, and that's when they did the testing. I can always digest things easier in the evening/late part of the day. My hope is that with the diet and exercise and some alternative med treatments (massage, yoga, acupuncture etc) that I can reverse some of the slowing and get it back to a better place.

I was diagnosed with significant gastroparesis this past fall. I had all the symptoms you are describing. I took photos of how bloated I was after eating, and I looked 5-6 months pregnant. I'm really thin so it was very noticeable. Lots of stomach pain. I lost of ton of weight because I couldn't eat. Lived on Zofran. The testing was pretty easy, nuclear medicine testing. I ate a radioactive breakfast and then had pictures taken after eating, right away and then at 2 and 4 hours. I felt really sick around hour 3. I've been on a low fat/low fiber diet, and making sure I keep up my fluids, and slowly I think things are healing somewhat. I will push it on days I feel better and back off if I have pain. They did have to rule a lot of other things out- IBS etc, but since I already had my gall bladder removed it narrowed it down pretty quick. Good luck! Push your doc to get tested for it.

I have cycles of sleeping issues. I raised the head of my bed and it has made a huge difference for me. I was skeptical, but I feel a little more rested each day and I can get up easier in the mornings. I wake less frequently. I still have a hard time getting to sleep most nights, but I think it's because my clock is wired differently! Even as a child I had a hard time sleeping before midnight.

This topic is also interesting to me. I have both POTS- dx'd in 1999 and PTSD along with lots of chronic daily stress (kids with special needs) My POTS started after I had Mono in college, although I had mild POTS issues as a teen. POTS went away during my mid and late 20s, early 30s and then I had my daughter (rough traumatic pregnancy), had my gall bladder out, dietary problems, got an intestinal bug and BAM- back to POTS. I've been working really hard this past year to get back to my level of functioning and now am treating both the PTSD and trauma stuff from growing up as well as working from a medical standpoint and playing with diet and exercise. I'm doing a program for the next 19 weeks to work on the mental-medical connection and I am willing to share my experiences on how it works with my POTS symptoms if anyone is interested.

Since this last flare, my typical schedule is pretty set now. I wake around 9, spend an hour in bed waking up, have a handful of saltines and then get dressed. (check email, etc) I get up and greet my daughter's bus and see which therapist is coming by, then I do phone calls and make appointments for the kids or me, deal with whatever issues the schools are complaining about. I take care of other paperwork, try to do a load of laundry, work on schedules all while sitting down/resting etc until the boys get home from school and then their one on one's arrive. I help with dinner, homework then chill with my hubby and play some poker online or chat with my friend on the east coast until we go up. I shower with help if it's a bad day, then usually fall asleep around 1am. I am very very lucky though, we have an au pair and we have a lot of help with the kids because they are all special needs (autism, various delays, medical issues) If it was just me I don't know how'd I do it. I feel bad that my kids have seen me go from being "healthy and active" to the more sitting around sick mommy, but they know that I do my best for them every day, and that's all I can do. I am really hopeful that once I pull out of this flare that it will go back to being "gone" for another 12 years like it did this last decade.

Oh it sounds like they are going to play dumb and give you are hard time. Did you request a formal meeting in writing? If you request it in writing they have 10 days to schedule and hold the meeting! Your daughter should qualify under "other health impairments." A 504 is not going to be enough if they are playing hedgehog right now. What sort of documentation do you have on her issues? I love helping other parents with IEP issues, since I've dealt with it for 10+ years and several kids. Please message me if you want further assistance.

My husband has taken to questioning everything they are giving me, doing, checking. Once the IV is in, meds given, I'm stable, he goes out to the car and sleeps until I call him to either come back in if they do something else, or come collect me at the door. I'm going to be typing up a list of medical history, med reactions, medications, allergies, and keeping it in my purse. I am considering getting a medic alert bracelet too. I don't even say dysautonomia anymore. Most of the staff looks at me like I'm nuts. I say orthostatic hypotension, and then I'll list my typical symptoms. Seems to help the confusion. I agree with you though, it's scary when you are so out of it, but you need to communicate or make sure they don't give you something wrong.

I don't have scoliosis, but my mom and two of my three children do. My mom did not have hers corrected and she is quite hunched. My children have very slight curves, but given my youngest had it diagnosed at age 2, we are watching her like a hawk. She has a lot of medical issues too so I am suspecting she may have problems with her ANS... they just can't connect those dots yet. I've brought it up with her neuro, her genetics doc, her pediatrician.... maybe some day they will listen. On the surgery front, my POTS reactivated after a nasty gall bladder attack and then having surgery to remove it. I had several surgeries in between my initial diagnosis and the flare up return. Why this time? I don't know.

Count me in. RIght side more prominent too. If the reynaud's kicks in you can see all the veins in my hands and fingers too. It's creepy looking. I have extremely pale skin and it is very translucent. Finding a vein is never difficult, it's getting the vein to cooperate that's the hard part! I have the bulgy vein over my ankle too. It's one more of those things that I have just accepted about this illness. The weird stuff that doesn't fit. Interesting that we all have a similar experience.

It's nice to know that I am not alone. Thanks for commiserating. I've slept about 3 hours, time for a benadryl dose and then back to bed for me. My heart jumping woke me up so I know it's still "Active" whatever is going on. At least my hives are coming down on my arms and my back. I am so sorry you've had lots of those nights too. Thing that pisses me off is the last two, this month, I have no idea what they are too. And completely different reactions. I'm kind of glad they are working me up for the mast cell stuff, so I could tell them there, hey this is what we are working on, since they've seen me 8 times since February for reactions. They were quite nice when I mentioned Mayo Clinic and immunology. Funny how that works. If I don't say it, I'm treated like I'm crazy and stressed out. Which I am getting to very quickly if I keep having these kinds of reactions!!!!! Thanks for sharing with me.

Well there is 5 hours of my life I won't get back. Just got home from the ER. 10:30pm-Took my night meds of my pepcid and my hydroxyzine, which I've been on as needed since 2010, but taking it rather faithfully over the last 3-6 months. Tonight, I take 50mg instead of 25. I was feeling a little full in my lungs from dust getting stirred up the other day and it's been really humid and we had a storm come in tonight. Typically, not a problem. I've taken 50 before, been fine. 1:30am, I had been asleep maybe a half hour, wake up with a start. Oh no, it's happening. If I huddle under the covers maybe it will go away? I could just be cold from the fan. Nope, there's the shivering and the shaking. Yup I gotta go pee. Pee, wake the husband, think maybe epi pen, but no D and I am breathing ok, so we head off to the ER. Get there and my heart rate is 140, BP is high for me 133/60 and I am like a sunburn red on my upper arms, fine red blotchy on my lower arms and my back feels like it is on FIRE. I try not to itch, but I can't help it. Hives all over my back. Pump me full of steroids, and benadryl and fluids, watch my heart rate bounce around and more shaking from the benadryl (I always have that happen with IV benadryl!) Things calmed down, felt a bit better, they released me at 5:15 and I am home and winding down before sleeping all day. My BP had returned to it's normal 93/55. So, now I am playing the "what caused this one" game. Could be dinner, but I ate at 5:30 so that seems "late" to me. Could be my vitamin water, but I drink that a fair amount. Could be some cheese. Definitely could be stress, we are buying a house right now and we were trying to figure out the schedule. But, I deal with so much stress with the kids autism that I barely notice it. I took my hydroxyzine with pudding. I am wondering if it is the culprit or the pepcid or the pudding. Anyone ever reacted to the meds that were helping them and then your body rejected it? I don't know what to do without it. It is my life saver. I'm scared to take it again. Counting the days to the Monday appointment. Even if he doesn't have an answer it'll be a starting place. I'm so glad the ER doctor was an understanding female..... Now, I am home, wired from the benadryl, and wound up from the night, but exhaustion is starting to hit. I have had numerous dizzy spells today and it's so humid here... I am sure all of that isn't helping. But, we close on the house in 10 days and I have to get the packing done. I have help, but it's a huge house. Always hits at the very worst time ever. Thanks for reading and listening to me whine. I miss my old life. Becca

Yep me too! I always feel like I get a delayed reaction to most things... ultrasound techs have told me that my bladder is a "delayed filler" and then I have to go a ton, I often sick way after others are, or react to a food much later etc. Frustrating because it makes it difficult to know what's causing what!

I moved from Michigan to Arizona back in 2000 for work, but I picked it because of the relative number of days of stable weather. Yes it's hot, and I don't tolerate that well right now, but most of the year it's great. I notice every monsoon though as the humidity increases and the storms start up, I feel worse. I wish I could afford the san diego area. The moderate temperature is so helpful. But the changes in pressure are horrible on me, and on my kids autism too!!! Holy cow, on the stormy days they are out of control! I hope your move helps you.

Awesome. Thank you. I don't know about going off the antihistamines though.... I'm pretty much useless and sick without my hydrox! I'll have to think about that one....

NM Potsie, is there a specific area of the skin they say to try the test on? Like arm is better than leg, or do it on your tummy or? I think that would be really interesting to do before I go see the allergist in case it's a rare time that I don't have a skin flare up going on. Thanks!

I have had it happen. It happened a ton before I got on my regime of 20mg of pepcid twice a day and my hydroxyzine. I get that super full feeling right away and then the nausea... it's almost like I can feel it moving through the upper portion of my digestive tract. I also use zofran for nausea, but I have not had to take near as much since I got on the pepcid. Definitely talk to your doc before starting anything, reflux can be a sign of a lot of things that are going on in the GI tract and you don't want to mask something that's serious.

My pain fluctuates. Where are you in your cycle? You might start tracking that, see if the hormones are aggravating the pain?

Hmmm several weeks ago I was having a bad day, didn't feel right and had many episodes of smelling smoke that my husband did not, over like a 4 hour period. I even ended up going to the ER because I was feeling so bad. They did nothing of course. Wondering if I should have an EEG done... Very interesting.