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About sisblostg

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  1. I had a TTT test last year locally as part of some follow up tests done locally and had the results sent to the Mayo instead of having to go there again. My TTT test at the mayo, the table looked like the lethal injection table, my arms were straped down but not at my sides they were horizonally out. My Mayo TTT lasted about 10 minutes each(with about 5 minutes of prep/setup) and I never looked at my hands/arms because because they were out. I was also wearing sneaked and a yoga pants so I didn't see my feet. The room was also very quiet, in fact the staff asked me to not talk too much and re
  2. I went to a specialist today. Lets call it my POTS/EDS posture voice was horrible. It was quite interesting to see how much better my voice got sitting straight up and using more energy. Of course I sure do not have extra energy! I don't think the constant acid beverages help either, my morning prune or apple juice and then lots of powerade all day doesn't help. I guess this is a common condition for those that are bedridden, have poor posture, don't eat meals sitting up, and those with other weak muscles. I never thought speech would be painful, but the treatment for this hurts more then card
  3. One thing I think that might have helped was that the topic we were discussing (a problem with a the only rental house in our area) was very upsetting, so I think getting passionate and angry about the subject made my blood pressure rise? I know when I go to the school and sit through my kids orchestra performances I'm barely able to make it through an hour. If I go for an IEP meeting and Im fighting for my child's services thus rasing my BP for sure I have a longer threshold and can ususally last 2 hours seated. I did feel like waves of fainting feeling but I so badly wanted my input to be h
  4. I have tried to increase the amount of time I could stand(without fainting or feeling close to it) over the past year. I had gotten up to 35-45 minutes before I started to have unbearable symptoms(lightheaded, shivering, pain in my feet & difficulty thinking) . A few days ago I was forced to stand at a meeting with some neighbors about an important issue. It was over 100 degrees out but I was drinking my powerade, and for part of the time leaning on a gate. I stood for almost 2 hours! The scary problem was went I went to walk my legs were like lead weights and reduced sensation . I literal
  5. My normal temp is in the 97's and anything in the 99's makes me feel bad. Hitting like 101 feels like 105 to me. I have tracked 2 types of tempatures in the last year with no answers (and plenty of tests and bloodwork). One is my temp rises as the day goes on. By dinner time it is 2-3 degrees high then the morning. Also after I have a long day, usually at the hospital or a stressful day of lots of physical activity or a funeral my temp gets higher. There have been theories of auto-immune conditions or that my EDS causes vascular imflamation so as I become active (or as active I I can get) it c
  6. I recently needed a CTscan looking at an my aorta. I hate the injection reaction and I have one kidney so I had a long talk with the tech. The radiologist agreed to let them scan me without the injection and they found what they needed to see without the injection. I had 3 doctors(radiologist, inventional radiologist and vascular surgeon) while I waited look at the scan and at my past scan and they agreed the injection was not necessary. I felt comfortable that I got the right answer and without the side effects of the injection. There is a lot of debate how helpful the oral constrast and i
  7. Anyone have an idea of how to make orange flavor? orange powerade is the only flavor I can take on a regular basis. With my coupon clipping/deal matching I have it down to .22 a bottle. I have to use bottle water for everything (no filter or RO has been able to remove the high arsenic levels in our water) so Im not sure how much I would be saving making it but I would be interested in if the flavor is available for emergencies when I can't get to the store.
  8. I have had a hoarse voice on and off since December. I had a chronic sinus issues and an unknown viral infection during that timeframe so I blamed my voice issues on that. About 6 weeks ago it felt like someone had hit me in the neck(like when you sit next to a toddler and they hit you in the neck with a toy by accident). It felt weird to swallow sometimes on the outside of my neck and I was losing my voice easily. I could not wear turtleneck anymore(and 3/4 of my wardrobe is turtlenecks due to my neck feeling cold all the time). I had my thyroid check and some basic bloodwork, all fine. I wen
  9. I wish I knew if I had any symptoms from it. I have pain but that pain could be from a number of issues I already have. I did have had some BP spikes but I also have had a few infections and fevers. I have been losing my voice a lot but I also have a chronic sinus issue. H-POTS/dysautonomia has so many symptoms it is hard to tell. I am already a worrier personality type so this is very hard. This is the first time I have seen this dr that ordered the tests. He was nice enough to look at my case(I don't like my PCP & I recently got turned down by 3 PCP's) so he just got my records and if g
  10. The best way to win disability is to prove the physical and mental health effects the disease has on you. If you can prove both physical limitations and a mnetal health aspect it really helps. There are 2 forms to have the doctor fill out called functionality forms. These forms are very important. The first person to look at your disability claim is almost like a customer service rep, not a dr or usually not even a nurse. Those forms show your disability in numbers and it is easy for someone to see how much POTS is limiting you. Also when you fill out the forms be careful what you admit to be
  11. I have had doctors go back and forth on EDS being the cause of my severe H-pots. I decided since my father died of an aneurysm and I had 2 cousins have uterine ruptures(many other family members with anersyms,strokes as well, I used to blame all the aneursyms on factor V leiden which we all have) to push my doctor into helping me get the blood test for vascular eds. After 8 months of paperwork issues my bloodwork was sent off in Feb. I feel like I am at a turning point with my POTS, I have been stable to do everyday stuff close to home but I really want to try and travel this summer. My blood
  12. I drive short distances depending on the day. Im very lucky that I live within 1/2 mile of both my kids schools. I hate how I have to even carefully plan out a trip to the grocery store to pick up milk. My husband would do all the shopping but sometimes I just want to feel normal and instead of calling him to pick up a few groceries, actually get out and do it myself. Driving is not the bad part for me, it is standing in line at the checkout. I will drive 3 miles to the friendly small grocery store that charges more because I never have to wait in line (they are nice enough if I called ahead
  13. i didnt take the hydromet last night and coughed in pain till 4am. I actually got to talk to my dr's MA(which was a shock she called about blood work) and she said he was going to call in the his go-to- cough syrup and he carefully choose hydromet for me because of OI. I said that this has atropine which causes rapid heart rates and she said the dr is always looking out for you, don't trust the pharmacist. I think Im going to have hubby pick up some kiddie strength cough OTC cough syrup.
  14. I have to chart my temp (for something unrelated to POTS) for 2 years. It was for a study at Yale. Ill try and find my report. I found underarm readings to be the most accurate. I have a themometer with underarm conversion, if not remember to add 1.5 degree to a normal themometer. Oral was the least accurate and the ear method was not accurate because my canal is slightly off and unless it is positioned correctly reads off.
  15. I was first given klonopin in 1995 after I started having what my dr called "really odd panic attacks" which now I know are my adreline surges. I refused to take it at first. Then when I had to fly I took one and flying was easier. Then when I knew I would be in a situation where I would get these odd panic symptoms I would take one. I took .5 like this for 6 years. I did not take any when I was pregnant, and had no withdrawl effects. In 2003 when my H-POTS was bad I started taking .5 almost daily. After finding out about my adernline triggers, bad startle refelx I still take my .5 but if I am
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