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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.

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!

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

I take klonopin as well which has a long half life(longer then advian), so even though I did not take one the morning of the test, I had taken one the day before so the medication was still in my system. I also had high NE levels with the klonopin in my system. I remember when I had the test they had a list of meds you could and could not take and they made a detailed log of what I ate, drank and took for meds before the test. Did they not give you a list of dos and don'ts. It seems like every test I have for autonomic or cardio stuff they have a very specfic list for me.

I have a chronic sinus infection for months. I started a round of antibodics last monday and it feels like a faucet was turned on running constantly down the back of my throat. At night I can't sleep because it feels like Im choking because of the dripping. My sinuses feel open and lighter(well way less pressure like a weight is off my forehead) which is good but the coughing is causing pain now. Im already in pain from EDS and now the coughing related pain is driving me nuts. My doctor took 3 days to get back to me (I really dont think he cares at all & would rather not have a POTS patient). His nurse left a message that he would send a script in for me. When I went to the pharmacy, the pharmacist knows me as the girl that can't stand in line evry long with the fast heart rate. He handed me a bottle of Hydromet, and commented about a side effect of causing rapid heart rates. I'm usually leary of new meds, but when the pharmacist warns of fast hearts rates (and questioned why the dr choose this) I don't think I even want to try. MY BP is running about 20 higher(150/90) then normal and my pulse 10-15 higher then normal. I'm looking for something to either help stop the drip or the cough. Sure I would love a good night sleep but I do not want any surprises so Ill settle for the drip or cough being gone. My doctor only works M-W so I cant even try and call till next week and ask his reasoning.

I am so glad I said yes when my doctor offered me one years ago. He knew something was wrong(I was not offically dx) and when I fell holding my then infant daughter in his parking lot he gave me the form. For several years I just had in my car door. Now it is the only way I would ever be able to go to my kids school events, do any light shopping on a good day or get out on my own. If I go out with my husband and there is a close space but not handicapped, we use that. If I have hubby to hang on to(I have balance issues/EDS) I can make it in the store. If I feel okay or at ceratin stores I use regular spots. I live in a retirement town and some senior citizens have yelled (and used some pretty nasty language) over the years at me. A few times I have cried over what has been said but I know it is the only way I can get out. One bad day when I dragged myself out of bed to get .15 a bottle powerade at a mega sale, a man screamed at me. He had a cane and said that a pretty young thing like me didn't deserve the spot, he had a cane from hip surgery at age 70. He rambled on about all the things (camping travel etc) he did at age 20,30,40.I normally would have walked away but I slipped off my clogs and put my pulse-oximeter on and he watched my feet go bluish and my pulse hit 180+ and I explained Ill never get a chance to hike or travel. He felt really bad and went in the store and helped me get the powerade. I will never again look twice at who parks in handicap spots or who uses the electric carts (another huge sore spot in town, seniors will scream at young people who use electric carts). There are many reason like kidney failure that you can't see.

My mornings are slow, while I drink my morning prune juice and fluids and wait them to kick in I play on the ipad since I am in bed. I like the games you can play against people(like gems or words with friends) and I have found lots of people who are pregnant on bedrest or have other chronic conditions playing. I then turn on some background noise tv and do some back excerises from my bed. If I feel well enough I use the recumbent bike. I try and make some special treats, cookies, cupcakes etc for the many kids that will come home from school. I wash my hair every other day which takes about an hour including recovery time. If I can I have make senior citizen neighbors that are widowed or have few local friends, I try and visit with one of them if I can a few times a week. The things that make me feel useful are best. I have lots of kids here after school and on weekends. Our school district has low budget and cut all the extras.My husband made our basement so cool for me. I have an art room, library, gym, arcade, music room, school room and computer room. I give little mini lessons like 20 minutes of foriegn language, science experiments, art projects, geography, and advanaced math. the kids that come regularly are all in the honors program now(several went from IEP to honors so I feel like Im making a difference). When they are at school I plan elborate scavenger hunts, games like the amazing race or the mole and make secret packets and clues for the kids. I came to the area I am in now to research a specific religious group. I still do some research and since that group is a hot topic and Im emailed or called for first hand accounts since I have been where few people have been inside that group. I work with women trying to leave that group or other abused women that are seeking legal help or divorce (I did not finish law school..but our area has not free legal aid so my half a degree is better then none). I only do what I am up to but sometimes feeling useful with the extra kids or women really help me feel better mentally even if my body feels bad. I also make sure I walk my 10,000 steps even if it is just around my house everyday.

My test results were similair to yours and I was dx hyper-pots. It did explain ALOT of my previous "odd panic attacks" so I believe the dx is correct. When they were doing the lying standing blood test for NE levels , I had them recreate one of these "odd panic attacks". Whenever I go to the full service groecry store I would be fine pushing the cart around but when I was standing still at the check out, I would get POTS symptoms but if any loud noise, anything startled me I would look like I had the flu, shaking(I can barley enter my debit pin in) sweating barley able to stand. When they recreated this my levels went close to 2000!

I had it done at the Mayo. It was one of the unamed tests one my schedule..it just said autonmic lab...and most tests that werent labeled were not fun. The lady who did my test was professional but not warm and fuzzy. I was already tired and not well hydrated (since I had to fast for certain tests and had limited time). The test was quick(less then 10 minutes total) but I remember it was hard to blow that long. When I complained the lady pushed me to finish. My test turned out normal thogh I felt like I had run a marthon doing it.

I have been treated at the Mayo as well as other major hospitals and I think in general with POTS and genetic conditions they are trying to dx patients earlier. They don't want to hear that you are now 25, 35, 45 and had 20+ years ago issues and been misdiagnosised and labeled without the right dx. When I got dx they asked about my kids. They asked to see pictures(even noted on my file alot about my kids and any health issues they had). My son had an odd problem during a PE class and a specilaist fly to our city and said she has dx over 500 kids with POTS or IO in the last few years and 10-15 years ago this wasn't even on the radar. What I found almost shocking was it took me years to get dx. My son went to the night time peds clinic when he was sick and my husband went with him. The night dr did not know me. By the time I got there they were testing him for OI(simple in office tilt test). The night dr had no clue of family history. I really think they are being proactive these days. I was tempted to ask if the pedtrician would be my primary care dr instead of my old stuck in his ways dr! I don't think any generic POTS packet or brochure the Mayo clinic gave me was great. The custom plan they made for me was what helped me know what I should ask for and try once I got home. I have had a hard time describing what is happening in my body to my kids teacher, or neighbors that have little medical knowledge. I found an article written about a study done in Mexico and central America. It was worded in non-medical talk, and gave the most real life examples in plain english (like how it is hard to wait in line at the grocery store, I remembering reading that part & said thats me). It has helped the normal neighbor or friend try and understand me. I can try and find it if you would like, but it is more understanding the patient then recommended treatments. As for information to give your dr I haven't found anything my dr wanted to read except the Mayo plan for me. Most articles are too long and most doctors(mine at least) dont even want to spend an evening over a patient that makes them little profit.

I have had 2 sucessful pregnancies (5 miscarriages, but I also have factor V lieden so that could be a factor in at least 3 of them) and I have eds (most likely vascular due to strong family history). My first pregnancy in my mid 20's I was okay until like 18 weeks, then I had a few odd BP reading so my doctor made me go to flexible part time days at work. I had a corporate job and it was nothing physical demanding. At 26 weeks the company went on strike, and I actually worked almost 2 weeks solid. I sleept on couch in my office. When the strike ended I was 29 weeks along and went on bedrest for the next 6 weeks. I was monitored closely, I went to the dr's 4-5 times a week. At 35 weeks my baby was over 6lbs, lungs ready so they did a planned c-section. My baby was fine. The 72 hours post partum were BAD. I had crazy high BP over 200, headaches, I just felt horrible. I honestly didnt even hold my baby till day 3. I felt better after having a d/c for clots and then had a few kidney issues that caused a month of issues but by 3 months post partum(a hard three months much harder then the pregnancy) I was back at work part time, I had traveled by airplane fine 3 times, and was doing okay. Baby #2 I think I was overly catious. By 16 weeks I stayed in bed, my husband treated my like a princess and I did very little. Besides my dr being driven crazy by my POTS BP/pulse readings I was okay. My baby stopped growing at 34 weeks and so they decided a planned c-section. My baby was little but fine, just a bad feeder for months, and had tempature regualtion issues. The dr said he could not close me c-section (i had never heard of this before, I was freaked out) he said the tissue was to fragile? It was another month in bed to heal open. Then I got an infection that lingered for 9 months , it was a new CMV infection. I really think I decondtioned myself by being in bed so long and I should have done more while I could of when I was pregnant to keep myself in shape. By the year mark I was back to normal. Able to travel and drive and go out. I have no regrets as far as what it did to my body by having kids. Sure they were rough months, pain, and I didn't get to do all the normal stuff you see on all these baby story shows on tv but who cares. My husband wanted one more (he came from a large family) and since during my last POTS relapse I was housebond for more then 9 months , he said it was just like when I was pregnant. My 2 reasons against it was I think as I aged my body would not tolerate pregnancy as well. I wish I had my kids younger but I was all aboyt grad school and my career. As I have now found a long history or anerysms and vasuclar EDS I now worry about passing this on to my kids. I have no problem with my own suffering but I look at my kids and can't imagine giving them this. We have been offered to adopt three kids but no siuation was right for us. If one was right I would do it. I also had guardianship of 4 kids on and off over the last few years due to their parents jobs loss and illnesses. The extra kids have actaully helped keep me going. I know if I did not have kids I would be in the house all the time. There was a day I had to go see my kids guidance counsler because of a deadline. I couldnt stand up and my husband was working an hour away(I would normally make him go in if I was having a bad day) and ,, I rolled into the school, not in a wheelchair , but on the ground and grabbed her leg. I got my child into the class but I also knew that I could find a way to do anything I needed to on my own. As for meds I took them during my first pregnancy and my child is fine. I took labetol for 8 weeks, hydrocodone during the last 4 weeks (for kidney and ligament pain) I took a half a lortab 5 day a week? My doctor had no issues with the lortab. They actually wanted me to due full pain management near the end. I also took a few klonopin during my pregnancy. I have hyper-POTS and was not dx hyper at the time. I just knew I would have the aderline surges and shake and sweat like crazy and my vitals were crazy. I took .5 klonopin during these attacks. I weighed it out with my doctor over a .5 tablet vs the aderline surges. I took a klonopin maybe 10 times during my pregnancy and my child was fine. I know klonopin is a controverisal one. My second child I took nothing and it took a toll on my body for sure. As I said I opted to stay in bed. I actually am in a worse state now then when I was pregnant, I feel just do to age. My pregnancy were never life threathening but were not comfortable. I confused doctors and I was labeled a demanading patient because I wanted extra care(but again my insurance paid I care about my baby not my dr wanting to get to the golf course early).

Does your daughter worry she will get POTS? Do her or her friends ever ask why you got POTS? like in the respect of why you(not the underlying cause). My house has turned in the kids hang out house. We have an art room for the girls and I have sleepovers almost every night(yes somehow POTS makes me the free babysitter, but I dont mind, it makes me feel useful and keeps me going). Lots of the girls come from large families and enjoy a mom figure that will just listen(Listen is one thing I can do). After 2 years of this I'm starting to get alot of girls that are mad that doctors can't fix me and that the school only raises money for cancer but no one cares about POTS or EDS. I guess several girls brought this up at school and I think the prinicpal thought they said pot like the drug not POTS and was confused.

I have been wondering again about mast cell activation but during my first visit to the mayo they seemed to rule it out via a 24 hour urine test, if this sounds correct? My whole life I have gotten very sick over certain smells. I can't get near candles, smoke, air freshners or perfume. Lately certain meds and foods have caused me to shake, sweat and look like I have the flu. I have a bad reaction to anything steriod, and now alot of antibodics. Someone thought it would be nice to give me some of that bath and body works armoatherpy sleep smell lotion a few weeks ago. You would have thought they pulled out a gun as I tried and stop them from opening the bottle and putting some on my hand. The smell, I felt like I could taste it gave me an instant headache, eyes watered, and stomach was sick. Living in the desert I have to have some pest control and I have hysertically fired more pest control companies then I want to admit. They promise me the spray won't smell or bother me but it always does. I just have been reworking my diet and Im always careful about any situation that could have the trigger smells.