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sisblostg

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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 relax. On one TTT when my BP dropped to 50/30 they said that was enough and I happily agreed. When I had my follow up locally, the had me in a hospital gown and spent about 25 minutes trying to get me to look modest. I finally told them to start the test I really didn't care if my bra was showing(I live in Ut & I guess some people are picky). My arms this time hung down at my sides. they had a tv for me to watch and I remember boy meets world was on and I was trying hard to hold on as long as I could. I looked at my hands at 10-12 minutes and my hands were dark reddish. I had never seen hand arms and hands this color. I am very pale normally. My feet were turning blue. Sometimes if I take a too hot shower I get a slight blue color on my feet, this was worse. I tried hard not to look at my arms but by 15 minutes it was almost like a tan line between the reddish lower arm and hands and my upper arms. I last 18 minutes before I was unable to speak and they stopped. Now remembering the color change scares me, I have to try and not think about it, the PA commented about the color change but the dr was only concerned with numbers. I don't know if it was the different way I was straped on the table? or that I it took so long to set the test up so I actually was on the table an extra 25 minutes. I was told no food or drink for 8 hours before so maybe that had something to do with it? I never was so happy to drink powerade and drank 32 oz like a college kid chugging a beer and usually I'm a timid swallower. I have found some doctors seem to see the quick 80 to 160 HR increase in less then a minute and don't care to see more. They just want to confirm the POTS and that's it. I've only found a handful of medical professionals that really want to learn more and some don't want the liability of waiting till you faint or pushing you to hard. The last time I went to the Er for a high fever and ask to lay down and the dr thought I was being a snob. he didn't know much about POTS when offered to demonstrate since I was hooked up to BP and pulse and when he quickly saw the pulse changes , he said please stop, and I got the quickest service in the ER and he got me right out. He said he was scared to see me stand up and didn't want to see the full show.
  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 cardiac rehab!
  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 heard since many important people where there. This was the one meeting that my inability to get to sleep and be up sometimes at 3,4, 5 am really helped. The one missing issue was I usually get goosebumps and shivers if I stand too long. Even at 100, 110 outside if I stand up too long I have to wrap in a blanket. This 2 hour stand it really felt like I had no legs left!
  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 literally could not walk at first. I felt embaressed and had no idea what to say or how to walk home (which was a few houses away). Luckily my husband came back and gave me a piggyback ride home. My feet were slightly bluish reddish but no moreso then when I take a shower. It took a day of rest to feel like I could walk again but my muscles have been twitching(upper leg). Was this circulation related or muscle weakness? I think what freaked me out the most is it reminded of my family members that has ALS. Currently I have lost my voice due to muscle issues and after being frozen, unable to walk it was very scary. I'm just curious what happens to others when they stand and do not faint. I'm kind of scared to try and replicate my experience unless maybe if I went back to PT.
  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 causes my temp to rise. The only thing that has made me the temps spike less is tons of sleep, which is a rare happening.
  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 injections are. Now I feel comfortable being a pushy patient while I got the scan about my options but if you go through with it you can have your dr put in the order injection only if necessary. If you think the ctscan will put your mind at ease then I say do it without the injection. I have hyper-pots and when my NE levels are high I understand the aniexty. and worry and it only causes me a vicous cycle of no sleep and worry.
  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 went to the ENT and had that flexible tube down my nose and the doctor said it was muscle tension dysphonia. I saw a speech therapist for a consult who agreed but was concerned that overall my muscles are weak, especially my neck and upper body(I knew that because I certainly have had a bad year healthwise & have slacked on PT, cardiac rehab). Is there a connection with muscle tension dysphonia and POTS or EDS? This is one of those things, losing my voice that I just can't believe happens after I have accepted my limitations on being able to walk and travel and now I can't talk on the phone? If anyone else has had this, has speech worked? massage? any meds? On the positive in the past I was never able to go through with the ENT putting the scope down my nose into my throat. I realized this time it was not the scope but that smelly horrible numbing spray they put in your throat and nose. I had it done without the spray and it was not bad at all. Afterwords it felt like a mild cold for a few hours but nothing compared horrible side effects of the numbing spray I had in the past.
  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 going to go over things with me and my husband next week. As for my blood pressure 3 doctors have been pressuring me to try and manage my pain better. Im not a pill person. I had one dr ask me to take half a pain pill at his office and after 45 minutes my BP was dropped by 30 points. I have tried so hard to find the right foods to keep much stomach moving (I have gastric empty issues) I hate to take pain pills regularly. I agreed to try 1/2 pill at bedtime. Right now I have Clondine. I only took it as needed since with POTS I didn't like my BP to get too low. I have used labetol (sp?) in the past. I know way too much about vascular surgery(I cant post why but I cant believe I would end up with an aneurysm given my life story). If I'm non-eds then a small aneurysm would not worry me so much. I would know exactly which hospital I would go to and even though it would be hard for our whole family situation we would make the sacrafices. With vascular EDS I would be afraid of any vascular surgery. I have seen too many diasters endings and so many regret the surgery and the families regret the surgery and wished their vascular eds loved ones passed from a rupture instead of the disaters the surgery caused.
  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 being able to do. It asks what if you go to church, and you went once last year for an important funeral but can't go weekly do not answer that you have been to church. Only answer yes to things you can do regularly without worrying about POTS. It is interesting that the doctors at the public health departments take courses in how to fill out the paperwork. Im not sure what your public health departmet is like but if you can see a dr there it might be worth it. If not make sure your dr has good notes and is supporting you. You fill out all the paperwork and do the phone interview(I would suggest you do not go into the SS office to apply or interview, just do everything over the phone). The SS office will asks for the dr records. Make sure the last few visits have good notes and get those functionality papers included. I started law school(never finished) but have helped people with forms before after my own struggle with SSDI(I had a long wait but won before having to see a judge because of those functionality papers). When you apply SS will tell you if you qualify for SSI or SSDI, if you have worked enough in the past 10 years you should get SSDI which is more money and gives you money for any kids under 18. It is always better to get this started asap. The worst thing that could happen is you feel good enough to work and have to cancel the claim. Good luck.
  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 pressure has been running higher which I thought was a good thing for my POTS symptoms (130/80 instead of 110/65). I went to a new dr to help with an exercise plan that knows a little about eds and he really wanted to know the bloodwork results before starting. Since it is taking so long he suggested a few easy screenings, echo, some other vein ultrasound studies in my arms, and an AAA. I got a call last week that they believe I have a small artotic aneurysm. Im suppose to go for a CTA and see the dr next week. Of course the waiting feels like I have just been handed a death sentence. I'm afraid to do anything. I'm under 40 with POTS, never smoked, not overweight, normal chlosterol , and I get an aortic aneurysm. What else beside vascular eds would cause this? The closest vascular surgeon is about 4 hours away and has no eds experience. I think the all the dr.'s and tech that have seen me are kind of in shock like me and don't know what to do. I can't travel far and moving is almost impossible.
  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 to have a few items waiting at the front) over the closer big box grocery store where they have 2 registers open and big lines. I used to drive 650 miles in one day just to take my son to a 30 minute dr appoinment. In the last 3 years the furthest I have driven is 8 miles and it was to a bunch of garage sales in neighborhoods where I know people in case I didnt feel well. I totally agree about traffic lights. the only long traffic light on the way to the grocery store is 2:28 cycle(yes I times it because I have had huge aderline surges at that light many times). Ironically the light is in front of the local Social Security Office. I have had to pull in the parking lot shaking on more then one occassion. I had my pulse-oximeter with me and I rarely use these days but at that light I tried it and my pulse went from mid 80's to 160's when the light turned red. My house is about 3 minutes away and it took a good 40-45 mainutes to get my heart rate back down and the shivers/shaking away. There are no stoplights south or east of me and I can drive through those neighborhoods without issue.
  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 going to try and go out to a big event (funeral wedding etc) I take an extra .5 pill. Klonopin is the only medication that has improved my quality of life over the last 18 years.I wish I had taken the prescribed .5 and extra pill during triggers long ago(my dr begged me to take more years ago but I felt like I was a failure if I needed a pill to get through a family a event or noisy school). Without it I could never attend my child's orchestra concerts or school plays. It is helpful for after the fact major startle adernline issues(like rock blasting at 6am) an extra .5 takes me heart rate and shaking from such events back down in about 3-40 minutes. Besides the excerise, extra fluids and salt intake, klonopin is the only thing that has helped. It has been 18 years and one .5 has the same effect in did when I started. If I take 2 .5 I feel a little woozy. Only once during a 4 hour MRI study I took 3 .5 in one day and I was sleepy and out so I do not think I have built up any tolerance over the years. I also have EDS (most likely vascular, waiting for blood work but strong family history). When I look at my family members who died of vascular eds, the ones that took klonopin/xanax or some sort of pill to manage stress levels lived 15-20 years longer. I think that klonopin really helped during the blood clot scares I have had. My family with vascular EDS , my dad (I didnt know this till after he died) took klonopin for 20 years, he lived to 64 and his sister has lived to her 90's on klonopin/xanax for years compared to my 3 cousins that died at 36,39,45 and my Grandfather 41 and my Uncle 45 who took nothing. My dr said certain forms of stress for people with EDS are alot worse then a klonopin a day.
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