sisblostg

A few weeks ago my MIL was helping me clean my house and now she found out she has stage 4 cancer that has spread to multiple locations and just weeks to live and is on hospice. DH's father died when he was a teenager and I want to be there for him as much as possible through this but it is already becoming overwhemling. My MIL is living 325 miles away now so DH has been driving to visit her. The drive is too much for me, it is even hard for me to be alone for the time he is gone. Since it is clear she will pass away soon, I am trying to pre-plan how I will deal with the emotional and travel aspects. I went to a local family funeral a few months ago and it wore me out for a week and there was no travel invovled and it was not a close family memeber. The funeral will be held about 300 miles away, the family gathering will be another 50 miles from that, then the grave side service is 350 miles from that. I honestly do not think I can make all that travel right now but I don't want DH to be alone. Since most of this back and forth is rural there is no place I can go to and lay down or rest. I can't ask DH to drive me and leave one of the parts of his mothers service and I dont know anyone else in the area that could help. The other part is that DH comes from a HUGE family, 13 biological siblings and 9 adopted. Some of younger kids/grandkids smoke constantly and I can't take the smoke and they won't stop for anything. Also I have had a hard time the last 6 months or so even listening to the younger ones(younger meaning 16-30) because they are healthly but keep making the same mistakes over and over again. They have so many chances to do great things in life but keep choosing the wrong path. When I listen to the conversations My pulse sometimes goes through the roof, like from 80-90's to 160's sitting and the adernaline starts running and I can't control it. I used to be able to. The other thing is I am holding a secret of sorts. Everyone in the family is saying poor mom, she never went to the dr., she didn't have insurnace. I am the only one that knows differently. Up until a few months ago she had an crummy job with excellent insurance. 3 years ago I made an appointment with a dr for a check up because I found out her sister died young of colon cancer(My MIL was adopted after her mom died in childbirth so I helped her find her siblings). It was across the street from her work. She refused to go because she wanted to lose 15lbs. I waited till she lost 15lbs and the next year made an appointment, again she refused to go. I made 5 appointments over the last 3 years. When she got let go from her job in Feb, I filed out the cobra paperwork. She was 64 and could have used cobra until medicare for about 7 months. She said she could not afford the cobra because she had so many bils/loans from helping out the younger kids with bail, back rent, ultlites etc. Right now everyone is sitting around her crying, poor grandma/mom never had a chance to go to the dr. I have said nothing but I think it would be a good time for my MIL to speak up and talk about how important it is to get a check up or get insurance, not one of her kids or grandkids has insurance that is under 30 and alot have it offered at work but won't pay the small premium. I am first concerned if I can even make a 1000+ miles drive in 36 hours. Then the emotional aspects will be hard, even though I had very different views then my MIL I talked to her almost daily for 10 years because I found her stories interesting and she needed someone with an outisde view, as well as DH who is usually not very emotional but now is really holding it in. I also do not know how to deal with the social aspects of the kids/grandkids without sounding like a snob and causing more issues. I know there will be smoking, but there also is a things happening like a 6th grade grand daughter who is pregnant and fluants it. I do not mean to sound judgemental but I do not want my 4th grade child to think this is okay or someone to celebrate. DH's oldest brothers/sisters and strict mormons and when they have made any comments the younger ones get vicious and it is so stressful. I spoke to 2 of the older siblings and they are only bringing kids to the service and leaving because of the social issues. I do not want to sound selfish but I am trying so hard to get better. I have had so many set backs. The summer is so hard because I have 0 help besides Dh and he has to work so I have to be as high-functioning as I can so the kids still get a normal summer. I am already stressed out just thinking about how to manage. Dh can't figure out a solution to the travel but he does say that this will be the last time unless indivdual circumstamces change that he will see his younger silblings/nieces/nephews. I also feel bad because I haven't been able to talk to her too much since she got sick. She cries and I feel bad and it is so stressful. I write her long letters everyday and I know she appreciates them because DH says she tells him she will read them 50+ times a day because she has never had anyone write her such in depth letters but she really wants to talk to me everyday but the calls get me too upset.

I feel the same way but for a different reason. I don't have any allergies(except pineapples) but I feel like there is nothing left to eat or I'm afriad to eat because of the reactions most food give me. I went to a nutritionist after I had a problem eating fat after I had my gallbaddler out. I was on low salt because of a kidney problem, and she put me on low fat, so I was like what is left all sugar! I finally found a diet that was working. Then the POTS dr says I need more salt(the kidney dr is mad about it). Then my stomach emtying issues began. One dr said high fiber , then 2 said low fiber or said liquid. I have no clue what I am suppose to eat somedays. I know the less I eat the better I feel with POTS but I am so hungry. It is also hard with my husband because of his crazy hours because I dont drive he eats only 1 meal a day a big late afternoon dinner. He feel bad eating in front of me, and if I eat a big meal I feel bad. It is weird how food issues can alienate you socially. I live in a retirment area. I had lots of neighbors that would want to eat out and I just can't do it anymore. I have tried to explain my condition but I feel like a lost alot of neighborhood friends because I can't go out to eat. Is there anything you are doing for easter you can focus on right now? I'm feeling pretty bad physically. I haven't eaten anything today, just been on fluids, but I'm a stuffing over 1000 eggs to play easter bunny tonight. It is one of the few things I feel like I can do. Our area has a high unemployement rate (over 25%) so my husband and I drive around hiding eggs all over town:)

I survived! Getting from my car to the ticket office to my seat was probably the hardest part. I got to ride to the seat on a golf cart so I bypassed the security check so I was able to take in my water, powerade, salty snack, sugary snack, and bland snack(covering all the bases). They had these weird high folding chairs but I lucked out being next to a support column so I leaned back on the column and put my legs across my husband so I was reclined as possible. My pulse stayed steady at about 100-105 the whole time. My O2 was 97-98 but that noise still rattled my body and I felt light headed. I think because I could see my heart rate and O2 wasn't worried. Just curious what my BP was. I was proud I made it through the whole concert. It was 100 minutes as I had read before I went. I'm not sure I would have been able to make it much longer. I can't say I 100% enjoyed myself because I didn't feel terrific and I got a little down because the band let every one come up on stage a few times and go up and meet them afterwords and I just couldn't make it that far but I proud I made it through without leaving. It is my biggest outing in over 1 year! Today I am pretty worn out, the worst is my achy legs and feet. Every year this same venue has a christmas nativy show. Christmas 2010 was the first year we did not go because of my POTS. I think going to this gave me confidence I'll be able to make it to the Christmas show this year. Thanks for all your support and suggestions!

I warm my prune juice as well. I was told it might work faster that way? I drink it quickly and follow it with 4 oz of apple juice. The only downside is it feels like alot of sugar so early in the morning on an empty stomach.

I have taken antibodics proactively for 10 years for my kidney(I have only one) after a bad infection causing a 3 week hospital stay. I have never another bad infection and no side effects from the antibodics (that I know of). I also have some weird immune system results. After looking over my blood work I always hear stuff like your immune system is running on empty or they ask me if I have had an HIV test because of the low T-cells and constant CMV infections (I have had too many negative HIV tests and since POTS has made my sex life non exsistant right now there is no possiblity of me being at any risk). I have had constant weird infections and swollen glands on and off for 15 years and constant for the last year. I know with the tonsils I had some recurrent infections, that caused scaring and then I got tonsil stones which has be debated if they are a cause of or cause immune system issues. I make sure to take good care of my tonsils now and gargle twice a day. The type of POTS I have causes my blood pressure to be normal or high not low so I am on different meds. My pulse is usually in the 150's. I think 55 is okay (my kids always call pulse in the 50's Obama pulse, his was reported to be 56) Mine has never been lower then in the high 60's which is at night sleeping. Whenever I change meds it takes awhile to get used to the changes in BP and pulse. I have a pulse oximeter I use but after a few days on a new med I can pretty much guess my pulse by how I feel. It would be nice if they had a one size fits all pills for POTS but for now I relaize I need to be patient and adjust meds/excerise/life very slowly.

Compression socks don't help. I seem to have blood pooling more in my stomach then legs? Right now I live in fuzzy socks. My toes pop out of the socket alot so and we have mostly hardwood floors so my fuzzy socks make me not feel my funny toes. Actually right now my fuzzy socks are glued to my feet. I went to the podatrist to get my feet taped really good while I'm waiting for my special shoes to come in and they used glue and put my fuzzy sock back on so I guess my wardrobe tonight will include my mutlicolored fuzzy socks! I had a wide variety of musical tastes as a kid. I'm going to see air supply, which you would think would not be loud but the singers walk in the crowd during the whole show. When I was 12, I had gone to see Alice Cooper on a friday night and saw air supply tickets for sale for the next night. I loved the soap santa barabra and air supply had been on several episodes so my friend and I got tickets. The maintaince staff decided to go on strike after the Alice Cooper concert and they turned off the heat to the building (this was new england inJan). I wore like 6 layers to the air supply conert and got to sit in the front row because not many people braved it. Russell the lead singer had the spotlight turned on me and was signing every women in the world. One of my many layers got stuck in the chair and I was trying to get the layers off and get on stage and everyone was looking at me in the spotlight. I never made it on stage. That is why my husband got seats right near the front because the 2 singer are known for singing to the women in the front rows. I was trying to keep my stress low, but my son just dropped one of the rare earth magents from his science project on his sister's laptop and it is not working now!

Sorry I forgot to update what happened(I know how helpful older posts have been when people update outcomes). I got the CT Scan without dye. My primary care dr was nice and stayed with me during the scan, taking my pulse a few times (mostly to make me feel better). The radiologist misread the scan , luckily I can read them and found the error. My primary care dr was pretty mad, because he knew how many mistakes have been made along the way on me and how another one would make me leary of going in for emergency care. My intentine is a kind of a mess from scar tissue in one area after I have had over 20 abdominal surgeries so that along with my very slow moving system was causing the problem. The dr let me try a "fun" home approach which worked as best it could. He told me to do mag citrate bottles 1 per day for up to 10 days with a mostly liquid diet. I made sure to drink fluids more then usual during this process. I made it through 3 days of that and thought it was enough. It took the mag citrate a long time to work. I read plenty of tales of people taking it for colon preps and it worked in 2-4 hours. It took me closer to 12 hours to start anything and closer to 18 hours to get the effects like the colon prep people discussed (not sure if this was related to dsyautonomia or not?). Since then I have been very careful with my diet, drinking a nice cup of morning prune juice and things are better, still move slow better at least are moving!

My husband was trying to be sweet and bought concert tickets 4 months ago to a band that I liked as a teenager. In the last year I have not done much besides, doctors visits, going to my kids school activites, and a few quick shopping trips. I am nervous to go for many reasons. On top of my POTS issues, my possible EDS or whatever hyperflexible issues I have got horrible last week. Both my feet are flat and it caused my knees to swell up and my hips starting popping so I'm in a ton of pain. I have both me feet taped and I can barely walk because of the pain(forget back my pulse going 160!) The concert is outdoors. My orginal tickets were near the front, so I would have to walk down 43 flights of stairs (and back up! no way that could happen). I traded them for the handicap back row and they said I could bring a folding chair. It is still a pretty long walk for me at least from the handicap parking to the place I can sit. The venue is outdoors so the tempature will change from 75-55 during the concert and I'm tempature sensitive so I don't know what I should wear. The biggest concern is the noise. I have not been able to go to the movies for the last 20 years. The noise from the movies "rattles" me and makes me feel so bad. I actually saw this band when I was 12 and was fine but by the time I was 15 my friends would tease me because I would sit as far away from the stage as I could because concerts made me feel horrible. From what I have read the concert is 100 minutes long with no intermissions. I have been able to sit at my kids school performances for about an hour. My pulse usually averages about 95-100 sitting down for the first hour. After that it starts to rise and I usually feel to bad to stay out any longer. I can sit in a chair at home and talk to a neighbor or friend for 100 minutes(I have always wondered if being able to sit in the same chair at home longer then at an event is due to aniexty(I have H-pots) or that being at home is usually pretty calm and quiet compared to 600 school kids performing and the principal voice so loud via the microphone? My husband has not pushed me to do anything this past year. He has done the grocery shopping, picking up the kids, driving me everywhere and working 2 jobs. I offered for him to take out daughter but I really think he wants to go with me. He grew up in a rural area and never got to go to a concert in his life, I grew up near a city and it was no big deal to go to concerts because there were so many. I'm already anxious about this so that isn't a good start. I thought about taking an extra klonopin(my dr has encouraged this but I rarely do, I always take it after I have a huge adreline surge and feel bad). I am trying to eat very carefully today and rest. I also want to not tire myself out so I can be functioning for easter.

When I was in AZ seeing Dr Goodman(pots specialist) at the Mayo , one of my concerns was muscle atrophy. He set me up with a PT who was knew alot about dyautonomia/POTS. He gave me three rountines, one if I was bedridden, one if I was able to do minimal activty and one for when I was able to get to a PT location or gym. It cost $75 , my insurnace ended up paying most of it (it was out of network but since I proved no in network PT knew about POTS they paid 80%). Since I live hours away, the PT has worked with my local cardiac rehab in helping coordinate my care. The PT looked at my cardio testing and gave specfic heart rates to workin within and avoid. It really gave me piece of mind with what was safe to try. The PT max heart rates were about 15 higher then my local cardaic rehab allowed. This 15 made a huge difference in what I could do. The cardaic rehab would stop me at their max heart rate which I got to in about 4-5 minutes and was told to stop, when the PT told then I could go 15 higher I was able to do 30 minutes. Muscle Atrophy is a huge worry. During my first bedridden downtime which was over 1 year I lost muscle and have not been able to get it back. I live where it gets to be 110 in the summer and I wear long pants everyday because one leg is visably smaller then the other.

As far back as I can remember I have been constipated but it seemed to follow a pattern with my cycle so I just adjusted the best I could. About 6 weeks ago I started having severe constipation. I tried everything over the next few weeks from prune juice to enemas, latatives,just about every product at the drug store(mirlax, senakot etc) diet changes and nothing got me back to my normal(I was able to make a small bowel movement every 3 days). The only change during the last six 6 weeks is I have been taking alot of antibodics to clear up a tough sinus infection. The bloating started to get pretty bad as well. Last week I was able to make one skinny tiny bowel movement and that was it. I told my dr and he gave me a bunch of iv fluids(which produced again a very small skinny watery stool). I'm starting to feel very nauseous and I can't eat too much. I also have a horrible headache. All my labs have come back normal and I do not have a fever. I had an incomplete study (because of time/travel) at the Mayo that suggested slow gastric emptying last year. I hate going to our local hospital (they do more harm then good most of the time). My dr ordered a ct scan with those 2 yummy bottles of contrast and iv contrast tomm. It will be hard to drink that much in that short of time. I am a small meal eater and all day sipper! The last to Ct scan with contrast I had done were when I was not very POTS symptomatic and my heart went crazy, it was so scary and it took days to recover. Right know I am very symptomatic so I am scard if my heart rate is already 150 what the contrast Iodine will do. Every issue I have had up until now I have tried to stay clear of the hospital and just try my best at home. The dr said he does not think I have any accute bowel obstruction, but wants the scan to see if it is partial or at least how bad the constipation is and help get me "reset". Is it worth going through the ct scan and the possible problems related to the test or should I just try to keep up the home treatments. I know alot of people with POTS have different stomach issues, how do you know when they are serious and you should go to the hospital or just really annoying and stay at home and treat?

I have found any form of excerise helps (but it is hard somedays to do any). I keep some excerise items by my bed, like those stretchy bands, small hand weights and do some PT rountines that are able to be done while in bed. I also try and use my recumbent bike everyday, even if it is at midnight. I know when life is super stressful the adrenaline surges will be worse. I now take klonopin proactively during these times. I normal take a klonopin after a surge and it helps but after talking to my dr why suffer the surge? If I know it is going to be a stressful week I take .5 klonopin every 12 hours. I have taken klonopin this way for 14 years and I have never needed a higher dose then .5 (I know alot of drs hate klonopin because of developing tolernace, in fact it took me 4 years to take it after my dr first prescribed it because I thought I was a failure for not being able to handle the adernaline surges/stress, after getting blood work to comfirm my pots was hyper-pots, I now see klonopin as a nessicary med to improve my quality of life). My husband helps during the night surges. My muscles get very stiff after the surges? and so a nice massage helps. I also try and keep the lights off, noise to a minium and if I'm in bed watch only "light tv", I'm glad nick at night reruns the nanny so much late at night. I find watching anything scary or depresssing news makes the surge worse or last longer.

I saw Dr Goodman in Scottsdale and I would recommend him. He was very professional and a good listener. I wasn't sure if my insurance would cover him or the testing but it was alot cheaper then I thought it would be. The best $$$ I ever spent on my POTS patients. Dr Goodman charges half what I pay to see my local I don't know anything about POTS dr. I live about 6 hours from Phx, if I live 2-3 hours away I would commute to see him on a regular basis, 6 hours is too much. I have nagivated the disability system for years. I got sick when I was in law school so I did not finish but I tried to use what I learned to help others with disabilites. The most important thing is functionality forms. If you have a dr that is willing to fill out a functionality form, you should be approved. Remember the person that first looks at your application is not a dr or even a nurse so a functionality form makes it very clear that you can't perform certain tasks and they will have a hard time denying you. I got disability approved within 45 days of them getting my funcationality report. The thing they question was if I needed a rep payee since I did not drive, or go out of my house much.

I did not see that specific dr at the Mayo clinic. I made the long trip to the Mayo last year. It was exhustating, expensive, and I worried about my kids the whole time. I was happy to be able to have a dr that understood my condition as well as many other department I saw. I got lots of testing and recommendations but without a good dcotor to follow me locally, how worthwhile is it? I think if I had been able to stay for 3-4 weeks it would have been more helpful but since you can't choose a time (like when your kids or out of school or when it is convinent to find a travel partner to be gone that long) I could not stay more then 1 week. In one week they did a good autonomic and cardio workup. If you feel like you need more specialized testing then I would go to Mayo but if you are confident in your dx and have seen Dr grubb I don't know if I would spend the time and engery and cost. My Mayo dr was happy to talk to and educate a local dr on pots and autonomic issues but there have been no takers. Does your insurance have an advocate service? My does , but since I live in a more rural area the dr selection is limited. I now see a pulmonologist as a primary care because he was the only dr that had see OI before. I would think since New england has so many dr's and if you get an insurnace advocate to do the calling for you to see if any dr had any autonomic knowledge or is willing to really learn. I had called around but I never thought of going to specialists like pulmonology(I have also heard that now high risk OB/gyn's are getting more pots eductaion) for autonomic conditions. I would just hate to see you get worn out traveling and have a positive experience with a Mayo dr and then come home and have no local support.

10 years ago I had a scare with my kidney and I was put on a very low sodium diet for the last 10 years! (no wonder I felt so bad). I went back to the same nutritionist that I used to get on the low sodium diet and helped me make choices for the high sodium diet. I can't take salt tablets because of my kidney scare (I only have one kidney so I want to be nice to it!) Taking salt tablets vs uping soduim intake via food is supposed to cause less kidney stones according to several doctors that refused to prescribe salt tablets. My goal was to get lots of protien (my muscles are starting to atrophy from inactivity), not too much sugar, and get my salt intake up. I have tried to be creative with foods I like so I don't dread eating. I also find I have to eat small meals. I will take half a einsteins bagel in the morning and put one egg with some salt on it. I will use the other half of the bagel for lunch with some roast beef or turkey and half a pickel on the side. These 2 items give over 2g of soduim. I drink one powerade throught the day, switching off with water. This is 400mg. I have become very creative with soup based casseroles or adding extras to can souped as dinner. My husband gets a costco chicken every sunday(they are loaded with sodium) and then I make a terrakyi bowl or pot pie out of the leftovers monday. I snack on crakers and a few chips, homemade salt chex mix or nuts throughtout the day (I always carry a baggie with me if I go out with these items). My dr recommended 10-12g and I think I do much better around 5g. In order to keep my family healthy and not have to cook seperatly, I use a Gordon ramsey suggestion of mini casserole dishes. I bought a set of 4 le cresuet mini bakeware. This way I can make my portion have more sodium and my husband and the kids a bit more healthy.

I have had 3 long bedridden POTS relapses before, the first time I had no kids, and the next 2 my kids were young. After my 2nd child was born I was unable to do much for the first 9 months. I have a wonderful husband who got up for every feeding with a smile. I guess since my baby was born in the winter and was born early I didn't feel as bad about not going alot of places. The only regret I have is I didn't take very many pictures of myself with my kids at that age. I was always feeling worn out and would dodge the camera. The last year has been very rough for me. I do not know what is worse, the POTS or I feel like I'm letting down my kids. I used to be the mom that walked my kids (and all the neighborhood kids would follow) to and from school. Now my husband works his schedule around doing it. I'm lucky if I am waiting on the front porch once in awhile. It is my daughter I feel so bad about because she is the child I always dream of having and I just can't go to everything. She had 5 award presentation this month, she plays an instrument with performances, plays sports, and she worms her way into every school event. She is in 2nd grade but the school lets her partciapate in all grade level activites so there is just constantly something to go to. She also is desperate to travel. We are living in a very remote area and since I just can't fly I feel so bad. I traveled alot when I was her age, all over the world and I feel so sad she does not even get to go to the beach or disneyland let alone be able to visit new york or dc or europe. If I had known I would not have been able to travel I would never ever choose to live here and now I feel like I am stuck and so are my kids. I never talk about my feelings with my kids but I did tell my last dr that I was at the end of my rope and I hated not being able to leave this area and he said join the club, he would leave in a second if he could(I think he is on a 10 year pay off your loans if you stay in a rural area program). It makes me sad, but I told my husband if I am not better by Christmas he can start traveling with the kids alone. I struggled through 23 surgeries to have kids and I feel horrible I get to miss out on all the wonderful things that are doing and all the new experinces they are having.

I'm new here so I don't know all the opinions on the study. I have had multiple healthare providers contact Dr. Levine's office for a copy and none have been able to get a copy. I was just wondering why it was such a big secret (or is it?). I went went to cardaic rehab and I had 8-10 medical professionals watching me not knowing what excerises to even try. POTS really scared them(most of the cardaic rehab team are ex-jocks who in our retirement city are used to helping the standard by-pass patient). I was worried because after 4 times of being bedridden over the years I have had some atrophy in my legs and I really wanted to do some safe excerising (sure I would love to be cured, but my main hope is to keep the muscles I have left!). Right now to save time and money my husband bought a fully reclining recumbent excerise bike from a going out of busines nursing home facility. The only positives I have seen using my bike is it seems to help with my excess adrenaline and "anxiety" type symptoms of hyper-pots.

I actually was born with 2 uterus's. My right uterus prolapsed when I was 19 and I had it removed. I felt so much better (imagine having 2 cycles a month w/pots). I was able to have 2 kids with my small left uterus. Then it prolapsed a this year. I'm waiting to feel better to have it out and waiting for the HUGE fight mr insurance will put up because will they pay for a second hysterectomy? Right now my insurnace has no "billing code" for pots or hyper-pots so after my last battle with them I just let it be billed as some form of tachycardia w/excerise intolerance because I honestly think opening medical bills make my pots worse. It is not the money as much as the silly errors and mis-billings! Today the new dr was nice enough to give me 2 hours. Our oldest children had alot in common so we got a little side tracked (it is spring break and I had to drag the kids to the dr's office). I am going to see him weekly and next week I am going to bring all my mayo reports. This week I just brought the summary. The dr said he would also call the mayo and consult about my condition and treatment. My new dr is from Hopkins but several of the drs in his practice are from the mayo.

When I first heard the dr say Shy Drager I was sick to my stomach so I questioned him. My grandma died of ALS and I am well aware of MSA. He has been a doctor about 40 years and it has been about 15 years since he dealt with rares diseases. Shy Drager is actually no longer a dx. It is MSA-A and he was well aware of MSA-A and that it is fatal. I guess back in the early days the early 70's when they did a TTT and it came back with OI symptoms it was referred to as shy drager even though only about 25% of OI then was actual Shy Drager. I also have hyper-pots so my norepherine levels were super high and in MSA-A shy drager they are not high. I also tend to have higher blood pressure not lower blood pressure when I push myself so I am not hypo like MSA-A shy drager. I know I never find a Dr. Grubb in my area and it has been 9 months of searching for any dr who even wanted to see me. I even got rejected by the dr that advertises as a diet clinic and the dr that hands out religious materials trying to convert you! Even though the dr had not seen a "pots"-shy drager patient in awhile he was right on with the medications, and excerise he recommended before he even looked at my refferal packet. He was also the first dr who took my stomach emptying problem and consipation seriously. I was sick of hearing eat more fiber, take a laxative and drink more water! He understood it was a part of my autonomic issues right away and got some tests ordered. He was curious what EDS does to intentines. I have had my uterus prolapse already.

I went to a new dr today that said he would try and be my primary care dr. He has an extensive background on a misdisplinary team at a research hospital dealing with rare disorders. He is the only local dr I have found that has any sort of knowledge about what dysautomania is. He kept referring to my pots as a form of shy drager, because it has been years since he treated a patient with dysautomania. I made sure he didn't think I had MSA and he said no(and the Mayo clearly said no), he just said over the years "pots" has been called bedridden intolerance, exercise intolerance and shy drager. The dr had seen people with EDS before but never dx it himself. After looking at my hands and feet(especially my feet and toes) he really thought it was EDS(enough to put it under one of my dx codes). He said he would be happy to order any DNA or genetic testing but didn't know what or how to order it. He wanted to make sure that I did not have the vascular type.

I have tried many types(knee high, thigh high and full pantyhose) over the years without sucesss. A few months ago since my pots has been so bad I got a new pair of waist high hose and an abdominal binder to try. It was very uncomfortable(an odd annoying pressure not pain) but I thought I would try and take a walk with my husband around the cul-de-sac. I was willing to take the discomfort if it meant I could go out to the store. My blood pressure was raised(usually 120/80 to 140/90) and my pulse(140's) did not drop during the 3 times I tried. After I had my last child the hsopital made me wear compression boots and they made me feel horrible (now I can compare it to a full blown hyper-pots atttack). I remember the nurse coming in and ripping them off me. I was shaking and sweating with my heart racing.

I am a night owl as well. I feel best between 9pm-2am. I just feel bad because my husband tries to stay up with me and he gets up at 6:30am with the kids. I found if I try any of my cardaic rehab routine I do it late at night and I can get more done. I also take my big evening walk, which is walking to the end of my driveway and back and up and down the stairs after midnight. I have always wondered if the neighbors see me out there in my pjs? I have always been more functioning at night. Before my h-pots dx I always thought I functioned better because I really do not like sunlight, and I like the cooler tempatures. My morning are especially bad if I am jilted out of sleep. My family is great to get ready for the day in the basement. The mornings when I a phone call or doorbell wake me up , for some reason the "shock" of being jolted out of sleep makes me feel horrible for hours and my resting pulse is even high. My normal morning rountine is about 2 hours to get ready, drink water, slowly get out of bed, go to the bathroom, rest, shower, rest and drink fluids, get dressed, rest, put on makeup,and rest. By that time it is noon!

Hi everyone! I was formally dx with Hyper-pots last year at the Mayo clinic. I have had symptoms for over 20 years but because I was had some kidney and blood clotting issues, I had some of the proper medications but for for the wrong problem. The Mayo was able to look at my hospital records from my teenage years, my pregnancies, and previous hospital visits/surgeries and they were pretty sure I had clear pots symptoms since 14. As much as being formally dx has answered so so so many questions I am glad in some ways I didn't know sooner. If I had known what was really going on, I would have probably not traveled as much as I did and met so many wonderful people. Now that I am mostly housebound I am glad I did as much as I did even though sometimes I got very sick after my air travels. Last May one of my kids got really sick for over a month. I was always a person who needed my sleep (I have an awesome husband who got up with our kids for every feeding and diaper change). The month my son was sick I got very little sleep and was so stressed. Of course my doctor told me to go home and rest. I tested positive for elevated EBV so I took the dr's advice and rested. By August I couldn't even walk to the bathroom. No local dr wanted to treat me (though I pretty sure 2 of them knew what was going on) so I waited and went to the Mayo Clinic. It took about 10 minutes for the dr to have an educated guess. I went through my week of tests and got dx with h-pots(gosh I was so glad I got my answer after years of thinking why do I have "panic attacks" at certain stores that have long lines but never at stores that have self check outs!), low vitiam D and B12, and low soduim(I had been on a very low sodium and restricted fluid diet for 10 years due to my kidney). I could only spend one week at the mayo clinic and it would be hard to go back (financially and finding someone who can get time off). H-pots explains alot of the unknowns I had over the years. The issue the Mayo did not have time figuring out was what is going on with my feet. I have had 3 EMGS (my grandma died of ALS so I triple checked). Bewteen May and October of last year both my arches fell(I had never had issues before), My feet were so flat and wide I could not fit into my shoes,, I went up 2 sizes. My toes are doing weird things, like my pinky toe can go sideways almost horizontally and my second toe on both feet bend inward, some times toes painfully cramp. I have to wear thick fuzzy socks around the house because my bare feet feel too unfortable on the floor. I went to a podatrist that just works with flat feet and he could not help me and he felt it was something "systematic" and related to my neurological issues. My fingers are also more flexible then others espcially my left hand. I brought up EDS to my primary care doctor (who is very nice but clueless, he just follows the mayo instructions) and he googled it and said that my toes and fingers are extra flexible but not as flexible as the pictures of people with EDS. After getting back from the mayo clinic I started cardiac rehab and was starting to get better. I went from bedridden to doing laundry, dishes, cooking, and being able to sit through school functions. Then 3 months ago I started getting little infections that wont go away. I got my first cold sore of my life and I had a swollen chipmunk face , fever and huge glands for over 1 month. Then I got an infected hair folicle(first time as well) another month, then strep thoaot(3 courses of anitbodics) and now I have a horrible sinus infection. My primary care dr dropped me over frustration of not knowing what to do. I have to start with a new primary dr. I really want to get back to the cardiac rehab but I with the non-stop infections I can't. My new dr is open to test for any sort of auto-immune condtions. Any suggestions of what to be tested for. I have had high levels of EBV and CMV for 10 years. Anything else? I just am feeling frustrated because it has been 10 months (I feel like I did when I was on bedrest when pregnant but this time my 10 months of bedrest didnt get me a baby) and even though I can do some basic housework everytime I stand up my pusle still goes from 70 to 130-140 instantly. I have not gotten any real relief just learned how to manage fast pulse, the adrenaline surges, and how to pace the little activites I can do. Sorry for such a long intro! I currently live in a rural middle of desert area over 2000 miles away from home so besides a great husband and 2 understanding kids I have little support.