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About azmusiclover

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    Advanced Member
  • Birthday June 3

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    Music, family, poker, psychology, and striving to get better!

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  1. My son is 12 and has been experiencing some heart rate/blood pressure changes, feeling faint, seeing colors when he stands etc for about a year- right when he started hitting puberty full on. I talked to Dr Goodman at Mayo about it and have let his pediatrician know our family history since the kids have other needs and we have an appointment to see Dr Goodman with my son in August. Given her other cardiac issues, I would mention the symptoms to the cardiologist for sure at the appointment and then maybe casually mention that POTS is a consideration for yourself if there seems to be an openin
  2. I saw Dr Goodman today. He has a few more gray hairs this time, but had on a very nice suit and tie. He is very pleased with my progress and we talked about what I feel has helped me to pull through this flare. He went back down the path of mast cell with me and talked about how in the last few months since I had last seen him, he has seen so many more patients who present with hyperpots, EDS/joint hypermobility and have mast cell symptoms even with testing not showing. He said I completely fit the profile and since I am already doing partial mast cell treatment and feeling much better with i
  3. I've been working on Dr G to do the IV's for me in flares because I have kids with special needs and I HAVE to be functional. Not that other kids don't need parents, but with mine their dad is not involved and my husband can only do so much. With all their therapy appointments and Dr appointments I have, I have to be able to transport safely etc. Dr G still won't do it. I see him next week and I'm hoping he will at least write me a standing order for the weeks when I have massive appointments (like next week...) Especially during AZ summers which are quickly approaching. I don't plan on him g
  4. It's a pretty strict diet. Very low fat, low fiber. I can tell when I don't follow it. The bloat stinks and I'm not a fan of the pain and gas either. I am doing better since I'm on it. I take a lot less zofran, which helps cut down the constipation. I hope the GI can find you some relief! Hang in there.
  5. I have been sick almost every 2 weeks since Thanksgiving. Sinus stuff, stomach flu twice, once requiring hospitalization. My daughter has been sick too. She had a wicked case of strep along with the tummy bugs and the sinus stuff too. My middle boy had a couple rounds of it, but not too bad. Oldest boy barely got sick at all. Lucky him! I really really hope that as it gets hot here the germs will go away. Then I will just feel crappy from the heat! Feel better soon!
  6. Lots of GI issues here. Was diagnosed with IBS in college. It resolved for awhile, and then after I had my kids, I started having problems again and then my gall bladder quit and ever since that, I have lived on zofran and deal with pain and cramping and tummy issues almost daily. I bloat after eating, gas, you name it. I have a lot of trigger foods. I can't eat salad anymore at all, tomato irritates, rice is horrible, can't do much that's fatty or high in fiber or fat. I'd rather just not eat at this point. For about 6 months last year my diet was pretty much chicken noodle soup or broth and
  7. My feet are always cold. My husband will touch them and be amazed by how cold they are. It's 91 today and I am under blankets for my legs because my feet and legs to an extent are cold. AC makes me even colder. I cannot have anything blowing on me. I swear I will turn into ice. I am hyperadrenergic POTS, possibly MCAS and very hypermobile (mostly likely EDS; I want a second opinion on that from someone who sees it more frequently and looks at all my symptoms)
  8. Wow! It sounds like you really did your research. It may have been that the counselor just went with what worked for her other patients and couldn't break out of the box for you. I am sorry that even with all that preparation and communication it didn't end up being a good fit. I like asking your PCP if they have any recommendations. I got sick with mono my first time through college, I kept going even though I wanted to take time off and shortly after the POTS symptoms started. I kept trying for 2 years and it was killing me so I quit. I have about a year left and I am doing school online. I
  9. I've been seen at both Rochester and AZ. I was originally diagnosed in Rochester way back in the 90s. I don't know who is there now to see. I really liked the doctors I saw when I was there at the time and I love how they handle things. I think bringing a list of what you want to try and what you'd like to do is very helpful since they will see you for just a snapshot of time. When I went I met first with cardiology and they did a big work up, I had labs, autonomic testing, EEG, more bloodwork. Then I met with the cardiologist again and went over everything. At the time the cardiac stuff was
  10. I am so sorry that your last counselor didn't seem to get it. Not every counselor is for everyone. (I'm in school to become one! LOL) Just like everyone has different personalities, every counselor has different styles in how they work with people. One of the things that really helped me to find a great counselor was to figure out what I wanted from therapy and find a counselor who aligned with that. Do you want a counselor to be a sounding board? Do you want someone to give you homework? Are you looking for talk therapy, or experiential therapy etc? Are you open to group therapy or do you pre
  11. I just started PT for my hypermobility and to help me get back into exercise. My PT is very willing to go at my own pace, while helping me push just a little. So far it's been going well. We do exercises to help strengthen my core and my legs. Your PT should do an evaluation on you in your first appointment to target the areas where you have weakness and also get a feel for your restrictions and concerns and what you want/need to work on. Every PT does things a little differently and of course they are going to be providing you with direct support and guidance. Be sure to have someone that you
  12. Nowwhat! I see Dr. Richard Lee in cardiology. (There are two Dr. Lee's) If they see something with my oxygen I am not sure if they will send me over to pulm. but Dr. Lyng is my MIL's doc for her cancer, so I have heard great things about him. I'll keep you updated on what they do, find out etc. And, we'll see if Dr. G orders anything as well.
  13. No I don't I bought it like 3.5 yrs ago after my daughter was born and I wanted to hold in the remaining baby weight lol. It's so stinking hot here for a majority of the year I haven't worn it much.
  14. My son had his very first concert tonight with the Phoenix Boys Choir. I really really wanted to go. Even though I'm in a bit of a flare, I showered, did my hair and makeup and I got a new dress, so I put my spanx shaper on underneath. I made it through the whole concert!!! I think the spanx really helped with the pooling and I could stay upright in the seat. I'm wiped out, and I am sure I will pay tomorrow, but I was so happy to be out in public and see my son perform and actually be dressed up with makeup on! In the not too hot months, I may need to add that as a staple to my wardrobe. My
  15. Thanks! It was a good visit. He wasn't too worried about my EKG changes since I was really dehydrated and my electrolytes were off. However, he really listened to me talk about my fatigue and lack of restful sleep, even when I sleep 7-8 hours. He asked hubby if I snore, which I don't, and he asked me if I get out of breath when I walk upstairs or any inclines. Which I do. He said he isn't completely sure what he's looking for, but he does NOT think these symptoms are related to POTS. Next step- next week I go for another Echo with a bubble study again, and then I get to do an oxygen test, whe
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