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jolineshope

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  1. I had a two year remission, that was bliss for me. In the beginning of the two year remission I would still have symptoms but they were more tolerable so I would slowly push my activity level each week. Then before I knew it I was living my life "normally" with really no symptoms except every so often when I would not do my daily rehab exercises or if I stayed in bed for half the day for whatever reason. by the second year of the remission I was walking on my treadmil everyday and doing yoga and Tai Bo and really just enjoying life with no symptoms. For whatever reason last month i started having symptoms again and like an over confident idiot I just brushed it off and carried on. Well as the weeks have gone on the symptoms have increased and my activity level has fallen off with the increase in symptoms. finally by this week I got hit hard, still not sure why but I am now back to my wheelchair and being mostly bedridden. I have gone back to my EP cardio and for the past two weeks we have been trying to get me adjusted on meds again but it has been to no avail, so I am headed back to Vandy and I am starting back into cariac rehab. I am not reaching a point of panic yet because I got better once and I know this is not forever, I will get better again I just need to find what it is going to take to get there again. Obviously, you can get better and even reach a point of being symptom free, but I have now learned that you still have to be aware that you can go right back, so you need to pay attention to what your body is saying to you at all times. For those of you that are still trying to reach a point of remission or for those of you who have reached it and then gone back to being sick again just remember that it does get better , you just have to find the therapy's that work for you and remember this is just one moment in your life and you will get passed it. always have hope and always keep trying everything and anything, you will get there, just don't panic because that plays into this illness and it can make you worse. good luck to all of you. Jolie
  2. Hi, I have EDS type I, II, and IV with cross-over variations of other forms. I also have dysautonomia. I was diagnosed with the hyperadrenergic dysautonomia form, so for me my BP and pulse go really high when standing, sitting, or doing just about anything. Then when I lay down my BP and pulse drop very low, so I am the opposite of most other people. For me it made a huge difference to get the right diagnosis because before I was given the right Dx I was being treated with drugs for people who suffer from orthostatic dysautonomia. Drugs like midodrine and florinef, unfortunately, those drugs just made me worse and pushed my BP up into the the 200's over the mid 100's and sent my pulse into the low 200's. I was taken to the ER several times with numbers in the stroke range. It would then leave me worse then I was before attempting these drugs. My docs would then go on to try SSRI's and the nearly fatal SNRI's. These drugs set me off into what is known as a "seratonin overload" or also known as an "autonomic storm", which did end up causing me a TIA and left me fighting for my life in the NICU. At that point my doctor contacted Vanderbilt and I was sent there within days. After several tests it was clear to Dr. Biagginnio that I had the rare type known as hyperadrenergic dysautonomia. I was then put on two different kinds of BP drugs, hydration therapy and cardiac rehab therapy. It would take me 9 months before I would be able to sit-up and then stand-up with out fainting or sending my BP through the roof. The reason I fainted was not from low BP but because my heart rate would go up into the 200's and remain there long enough that it would cause my heart to beat and pump so fast that it could not adequetly pump blood and oxygen through the heart and into the lungs and up to my brain, so for lack of oxygen due to the rapid heart rate I would black out. Anyway, I have been doing great for the past two years but recently for no appearant reason I have had a down fall and I am suffering again with extreme BP's and pulses from the littlest activity, and then at night I suffer from extreme low BP's and pulse. I will be going back to Vandy for help again, but I thought I would let you know that it did make a difference for me to have the appropriate Dx of dysautonomia. As far as there being a specific type of dysautonomia related to EDS, I do not think that there is one , just like I know not all people with EDS have dysautonomia. My form of EDS is a geneticaly inherited and my sister and brother and mother all of have this form and so do several of our chidren and cousins, many of my relatives and all of my mothers family have died from type IV EDS in there early 50's. My mom has survived an aortic dissection but is now dealing with two more aorta anuerisums and has had several strokes, yet only me, my sister and two of my three kids suffer from dysautonomia and I am the only one with the hyperadrenergic form of it. So, I think we are all individuals when it comes to EDS and dyautonomia. I hope this helps. Jolie
  3. Hi...I'm not real good with being able to relay what it is like to have this illness either, but I did find this great site that has a great section on how to describe to others what it is like to live with a debilitating chronic illness. The person who wrote the article suffers from Lupus, but the theory that she uses to describe a typical day in her life to a friend could apply to any one who suffers from a chronic illness, yet looks healthy. It is an amazing piece to read and a great article to print out and give to friends and family members, who "just don't get it". I printed the link, but if it does not work you can find the article at Butyou don'tlooksick.com The article is called "the spoon theory" . I hope you enjoy it and hope it helps you to describe what it is like to be you to your family and friends. Joline the spoon theory
  4. Doctorguest - I have a question for you, can you please explain the difference between hyperadrenergic POTS and hyperadrenergic dysautonomia. I ask this because my local docs still consider my dx as hyperadrenergic POTS or at least they will refer to it as that. Yet Vandy always refers to it as hyperadrenergic dysautonomia. Obviously both forms fall under dysautonomia which just means the dis-regulation of the autonomic nervous system, so what then is the difference and why would one form allow you to be able to be helped by the "standard" POTS drugs but if those same drugs were used in the other form it becomes a devastating outcome? Here is another question, both forms cause high BP's and high HR's , so why would the "standard" POTS drugs help the POTS form, why would it not send their BP higher? Also I don't know if you can answer this question but I will ask you, like I have asked my local docs. Why is it that most days I can keep my BP and HR under control and then out of no where I can wake-up and get hit with a day of extremes? Oh and some days my HR goes low but my BP will be very high and then other days my BP is very high and so is my HR, can you explain this, because my regular docs just keep telling me that they do not know why this is, but from what they know it is not unusual for dysautonomia. I know you may not know the answer to my questions either, but I would appreciate any knowledge that you may have. Thank You in advance for any information, Joline
  5. Hi...I don't post to often but check in from time to time and this thread caught my eye, after reading all the posts, I decided to throw my two cents in. I was first dx last year about this time with dysautonomia, by the University of Chicago. However, my doctors there had never seen this form before and didn't even know what to call it, other then an atypical POTS. At the time I was bedridden to the point that I could not sit up in the bed or use my hands to even wash myself. Even talking or laughing would send my BP and HR right through the roof, and then I would pass out (I did not pass out from low BP , because mine was always high and if I got physical it could easily get up to 230/117,but form severe tachy, that at times would reach over 240 beats per minute, sending my heart into fibrillation). So, in an attempt to try and help me my docs decided to try and treat me with the "usual" drugs used for POTS patients. The first drug they started me on was Midodrine. Now as you all may know Mididrine is used to raise the BP in POTS patients. So, there should be no surprise as to what was going to happen to me! Within about 2 hours my BP which while laying down would be around 147/98, went to 187/112. My HR while laying before Midodrine was averaging 98, and it went to 187. At this point my head was hurting so bad I could not think much less talk. My vision became so blurred that I could not see anything infront of me. By late that night the nurse called the on call service and by the time they came up to see me I had - had a TIA from the extreme BP, which was now at 250/137 with a HR of 215. Within minutes of that I coded. I ended up in NICU for two weeks. needless to say the Midodrine was stopped immediately. My docs were not convinced that the Midodrine was the culprit and so decided to try Florinef. Once again, a drug that is used to raise low BP, and again we would see the same event take place. Finally, my docs decided that this was not a type of POTS they could treat or even knew enough about to help me. I was then referred to Vanderbilt. I was tested and treated at Vandy by Dr. Biaggioni, who sat and looked through my records from the University of Chicago, and could not believe that they did not get what was going on here, and could not believe that they would prescribe drugs for hypoadrenergic dysautonomia (POTS) when I clearly had the hyperadrenergic form and should have never been given any of those drugs. This appointment would be the first time I would be given a clear dx. Dr. Biaggioni would dx me with Baroreflex failure / hyperadrenergic dysautonomia / hyperreflexia/ SVT's. I would then learn that certain drugs would be a very big NO - NO !! among the drugs contadicted for my condition would be drugs that raise BP and or HR like Midodrine, Florinef, Mesitonin, etc.. other drugs that Vandy totally contradicted use of were SSRI and SNRI drugs . (which I had been tried on several different SSRI drugs while in the hospital but the side effects and the effect on the BP and HR were very serious and I was taken off of them immediately). Any drugs that raise the epinephrine or norepinephrine levels are never to be used in me. As well as these types of drugs there are many others that no one including Vandy seems to know why they would cause the problems that they have with my autonomic system, but according to Vandy it is not unusual for people who suffer from all forms of dysautonomia to have multiple chemical reactions. Vandy would also try me on a small dose of BB but said that these drugs only block the epinephrine and norepinephrine from being re-uptaked by the heart, where as for hyperadrenergic forms of dysautonomia, we need to have these levels inhibited from even being made in the brain. So, the better choice of drug was to use anti-cholernergic drugs like Aldomet. This drug would even help to tone down the adrenaline rushes that surged through my whole body and on many nights woke me from a sound sleep with a HR of 180 and a BP of 187/110. I would also be told to use both compression garments for my legs and stomach and I would be told to avoid all salts, but I should increase my fluid as much as possible. I can tell you that it took me three months of this therapy before I would be able to sit-up and walk from my bed to the bathroom. From there my abilities would increase at a very slow pace but the drugs have definetely worked. I no longer wake with adrenaline rushes, I have gone from needing nursing care, to taking care of myself and I now get out, but have to use a wheelchair with a service dog to pull it so as not to raise my BP. I still suffer from high BP and HR but not to the degree I did before the drugs. I still suffer with passing out quite frequently, but once again it too has gotten better. My local docs fax and e-mail Dr. Biaggioni at least once a month and he still coordinnates my care from Vandy. I am also doing cardiac rehab and TT training. Anyway, there is a substantial difference in treatments from hypo versions of dysautonomia to hyper versions.You would not want to give someone drugs to raise BP if they are already suffering from this nor do you want to give someone drugs to lower BP if this is there main problem to begin with, becuase the consequences can be devastating!! In all last year I coded three times and my family thought they were going to lose me because of medical mistakes made due to the fact that most doctors who think they know about POTS believe that all forms can be treated with with the same "standard" group of drugs. This could not be further from the truth! Dr. Biaggioni made this very statement to me and my family after reading my past history from the University of Chicago and then reading my test results. So, I do not want to upset Doctrguest, but it is not true that all forms of dysautonomia can be treated from the same group of drugs, the hyeradrenergic group gets treated with completely different drugs, and some drugs are very well contradicted in us. Anyway, this is my two cents for whatever it is worth. Joline
  6. Hi...I know you said that you applied for disability and were denied, but have you thought about going back and re-applying again? You may want to try again and if you are denied again then you should get a lawyer to help you fight for it. Other then trying that, I'm not sure what else to tell you. Sorry, I am not from Ohio and I don't know what other agancies may be able to help you. I'm sure there are probably others on here that will be able to give you more help. I can tell you that it took me three attempts and a lawyer before I got my disability approved. Unfortunately, it is not easy for the truly disabled to get it, you really have to fight for it, but it is worth it if you can hang in there. Joline
  7. Ernie, I forgot one more thing that is essential to any one with IBS issues, and that is stomach exercises, because it will help to tone the stomach muscles and help to coordinate the GI tract movements. This was emphasized to me by both doc and nutristionist. You don't have to do stomach crunches either. All you have to do is lay on your back and do pelvic tilts. ( you push your pelvis up while pushing your belly button down to the floor) Then keep your pelvis on the floor and lift your shoulders and head up while holding your pelvis down.You can also sit and twist from the waist from side to side. Then there is where you stand-up and lift left leg (knee bent) while bringing your right elbow to meet it, and vice versa for other side. Lastly lay on your stomach and and lift your shoulders and head up and back toward the ceiling while keeping your legs flat on the floor. this one you will feel it stretch the GI muscles and it may hurt at first but after a couple of days you will start to notice the difference. ( start with 10 reps once a day, and as time goes by add more reps or more times a day)These are a few exercises to try. One other thing is to massage your lower abdomen from hip to hip and massage from the left hip up over the belly button and down to the right hip. (you will be following the normal GI tract movement) This is to help stretch the colon and get it used to coordinated movement. O.K. I have written enough, I hope this helps some, I know it was amazing for me. My best to You, Joline
  8. Hi Ernie, I don't post here much, but do check in from time to time, and your post intriuged me because this has been an issue for me for many years. It has taken me along time to figure out how to control my IBS. I too suffer from the same symptoms as you. I have tried many drugs with little to no success. I tried every fiber drink and tablet available, but every one of them caused severe gas and bloating, even the ones that are not suppose to cause gas. I have been tested celiac disease, but it was negative. For me the symptoms were reaching a point of controlling my life. I knew I had to find something to help myself. So, I did alot of research both on the net and books. Then I got a hold of a nutristionist and we put together a diet that would hopefully work for me. The first thing the dietician took out of my diet was lactose of any sort. (milk, cheese, ice cream, yogurt, etc..) I wasn't happy about it but within days my symptoms seemed to improve. However, this was not to be the total answer. So, we then removed all hard to digest meats and greasy meats. (beef, pork, lamb, turkey) once again things got even better, but again there was more to do. So, we removed all white flours and rices (I should also mention here that I was so bad that any type of fiber foods would send me into a tail spin so I already had eliminated wheat, and bran type breads and pastas and cereals.) Now I was removing all the white types of breads, cereals, pastas, baked goods as well. At this point I was almost normal, except for the burning and occasional heart burn. So, we took it a step further and eliminated complex carbohydrates and acidic foods like tomatoes, ketchup, oranges, lemons, etc.. My diet dwindled down to fresh veggies, fruits, chicken, and seafood. It was hard to learn how to cook food that was filling but with the help of my dietician I learned great recipes and very filling foods. Within weeks of doing this diet, I no longer had issues with IBS. I also noticed with this diet that I had more energy, my skin looked brighter, I had lost all my fat and had gained lean muscle. I also no longer suffered from hypoglycemiea attacks. It has been three years since starting this diet and maintaining it and I can tell you that I no longer list IBS as a dx. I also am able to eat some of the foods I love without paying for them. Things like an occassional ice cream, or a piece of cheese layered on my chicken, a crispy cream donut, a candy bar, etc. The trick to this is, I only allow myself to have one indulgence every other day. the rest of the time I stick to my diet. I'm not advocating my diet to you as the answer, because it does take time to prepare the foods and it costs more to buy all fresh healthy foods. However, what I would advocate to you is to get in touch with a dietician or nutristionist. They are a great resource in helping you figure your symptoms and what may be triggering them. They can also teach you how to prepare your foods with better replacement ingriedients and recipes. Here are some of the worst triggers for people who sufferr from predominently diarrhea IBS : lactose of any kind, fatty oils (vegetable oil, corn oil, etc..) , red meat, pork, carbohydrates, and fiberous foods. ( fiberous foods are great for people with predominently constipation IBS, but not for diarrhea IBS. because the fiber causes gases and scrapes through the GI tract pushing stool through to fast, which people with diarrhea do not need.) I hope this helps you some. lastly there are drugs to treat both constipation IBS and diarrhea IBS. There are drugs also to help with the cramping and pain as well as the bloat. So, your doctor was not being truthful about that part. I hope you feel better soon. Best wishes, Joline
  9. Hi, I have had several LP's over the years, with the last one being done in March of this year. I can tell you that they are uncomfortable, but not bad. The first couple I had done in the 80's left me suffering for months with headaches that made migraines seem like a walk in the park. However, in the late 90's I came across a doctor who read a study on how to prevent the headaches from happening and told me what I had to do to avoid one. What you need to do is drink a can of Coke immediately after the procedure and drink it quite quickly. The reason for this is that the syrup used in coke has a natural antinausea effect and the high content of caffiene causes the blood vessels to consrtict so the whole in the spine where they draw the fluid out of will constrict and plug itself almost immediately, and the caffiene will also prevent the headche too because it constricts the blood vessels in the brain. Then you should drink at least 12, 8oz. glasses of water and follow that with a can of coke every hour for three hours after the procedure. Then lye flat for the first hour but then you start moving the hospital bed that they have you in up a couple of inches every 20 min. until you are in a full sitting position. Don't let the hospital make you leave until you have slowly moved yourself like this to a sitting position. Once you have gotten to this position you can get up and walk and do whatever you want. Of course no heavy lifting or aerobics for at least three days. I can tell you since learning this technique I have had at least 9 LP's and have never experienced a headache or nausea again. I also went home and fixed dinner for my kids and cleaned my house , well that was before I develpoed this dysautonomia which has left me bedridden. But it has worked for my brother too. Who has had several of them due to his MS. It is an easy preventative method and you should be able to get right back to life with no worry about lying flat for days, so your midodrine shouldn't be a problem. You may want to ask your doctor about this method, because since I first learned of it I have come across many more doctors who know this. And the University of Chicago Hospital uses this method everytime they give an LP to anyone. The Nurse comes in with the coke and gets it ready so as soon as the doctor is done you start drinking it. If you do this you shouldn't need anti-nausea drugs or painkillers, and you should be able to sit up in your car and drive home. Best wishes for you, Hope all goes well. Joline
  10. Hi, I don't think your tipped uterus is the cause of your back problems. You see your uterus does not tilt back onto your spine. Behind your uterus is some of your colon and then your kidneys. I know this because I suffered with a severely tipped uterus until I had my hysterectomy. My tipped uterus never caused me problems unless I was having intercourse or during my pregnancy's. And even then I never had back pain I sufffered with severe cramping in the lower pelvic area. I never suffered from dysautonomia symptoms throughout my uterus years. However, the older i got and the more pregnancy's i had caused my uterus to become so weak that it finally collapsed on my colon and i was unable to have a bowel movement. That's how we knew what was wrong. It was at that point that the uterus was removed. And it was still another 12 years before my dysautonomia appeared. but even when the uterus fell completely backwards i never had back pain all my pain was located in the front lower pelvic area. Maybe you should go back to your doctor and ask to have a back work-up done. To see if your back problem is related to a slip disc or even arthritis of the spine. I'm still not sure that even these things would cause your POTS, but that is something you could ask a back specialist or a neurologist. As for the POTS getting worse with age, it may be from just getting older. I have read that in some people there symptoms can get worse as they age, and for others it can get better. Or maybe it is getting worse becasue of something that you are doing in your life at this point in time. It may also be because as we age our bodies change and the meds we have been taken for years may have to be adjusted to meet the changes taking place in our bodies. So, these maybe some things you may want to bring up to your doctor. I hope you find your answers or at least get your back pain under control. Best wishes to You, Joline
  11. Hi, I am sorry to hear that you were turned down by Mayo. But don't give up there are other places out there that are just as good if not better. However, I would definetely call Mayo on Monday and ask why you were turned down. Maybe it was for something that you could take care of and then get your appt. I'm new to this site so I don't know what your symptoms are or what tests you have had, or even what kind of doctors you have seen. This may make the difference in whether they will see you. I know it doesn't seem fair, but with these big institutions they want to know that you have done and been everywhere else before they see you. If you can't get into Mayo there are two other big Autonomic Centers in the US. There is the one in Cleveland Ohio and then there is Vanderbilt. I went to Vanderbilt and they were great I cannot say enough good about them. However, I had to be prequalified by the doctor to get an appt. there too. But maybe they will see you there. But if not then maybe you need to start in your home state and get what is needed to qualify to get into one of these places. I can tell you that I live over a hundred miles away from any major medical centers. So, I started out by going to my local country doctor who then sent me to a cardiologist in Chicago (over 100 miles from my home). I then was sent to an electrophysiologist cardiologist in Chicago. This type of a cardiologist is the type of doctor that does the tilt table test and other autonomic testing. And evey big city hospital has a team of these doctors on staff. These are the doctors that specialize in HR and pace makers, so they are in all big hospitals. But they are the ones to do the tests you may need, and then you can get the referral and documentation you need to get into one of the big Autonomic Centers. I can tell you that it took me 7 months to go from my local country doctor to getting my appt. at Vanderbilt. It felt like forever, but it was the road I had to travel to get the help I needed. And if you haven't had the testing then maybe you need to start there, because maybe you have something other then autonomic problems going on, which maybe in your favor. Because maybe this is something that can be fixed alot easier then dealing with some form of autonomic dysfunction. It is not hard to get the right testing, if your doctor was willing to get you the referral to mayo then ask them to refer you to a hospital that can do the testing needed. Your doctor will have that information and be able to get you the appt. needed. I hope you get what you need, because I know it is very hard not knowing what is going on in your body. It is also hard when you have a ton of questions and no doctors around that have the knowledge to answer them. But don't give up, you'll get there. Best wishes, Joline
  12. Hi, I am new to this site, and still learning how to reply and post, so I'm sorry for the last reply being a repeat of the original message. I'll get it, just give me a chance. Anyway, I wanted to reply to your post, because i know what you are going through. I was just diagnosed with Baroreflex failure / hyperadrenergic form. However, mine started after a spinal block that was done wrong. Prior to this, I never had autonomic problems. However, I have had many other problems since i've been 18 years old. And no one in my family (meaning my sister and brothers and mother and father) have never experienced any type of autonomic problems. But then there are my own kids, which I have three kids. Out of the three, my two oldest have been suffering for years with autonomic problems. But they were never diagnosed with this. The doctor has given a ton of different reasons over the past several years for there passing out spells and many of there other problems. When I began to have problems, I too was given crazy diagnosises that didn't add up. So, I started looking into things myself, and began searching out a docor to help me. During this time I began to learn about dysautonomia and realized that my two older kids and my husband all have some form of this. You see, my husband has been having passing out spells and heat and cold intolerances as well as migraines and many other symptoms for over 25 years. but he was always atributing it to meds he had taken or the weather, because he works outside as a construction worker. And the doctors have always gone along with him, as that being the reason for his problems. Then my oldest, shortly after going through puberty started with migraines, fatigue, joint aches, and passing out spells. I took him back and forth to doctors and we were told that he was a young kid who played hard and this was not abnormal. He was also diagnosed with asthma, as the reason for his shortness of breath and rapid heart rate which would cause him to pass out. So, we accepted this and learned to work around it. Then my daughter started with the same symptoms only worse, shortly after starting her menstrual cycle. We were told again it was probably due to the heavy bleeding, and everytime she tried to join a sport she would pass out. Even during gym class after running she would collapse. So, the doctor diagnosed her with exercise induced asthma. Once again we learned to live with this and go on. However, over the years both of my older children have had problems with black outs, even while driving. My daughter has gotten so bad that when it is that time of the month for her she can pass out just getting out of bed. It is becoming worse for both of them the older they are getting and it is very hard to watch as a parent. But now knowing my diagnosis, it is time to have both of them tested. However, my doctor still questions my sons problems but feels that my daughter definetely has it. but they will both be tested within the month. As for my husband he was diagnosed two weeks ago with POTS. So, I now wonder about a family link. The reason for my husbands POTS is probably due to a drug called DES that his mom took while pregnant with him. It was taken off of the market because of the number of severe birth defects and cancers it acaused the children born to these parents. We also know that it altered my husbands DNA and he can pass on the effects of this drug to his children. So, i'm looking into this link. Anyway, I know how hard it is to watch your babies go through this. The one positive that you have is that you know from the start what you are dealing with and you can get your daughter the help she needs now, so hopefully she will be able to enjoy the things she loves. I can also tell you that it is the scariest thing to watch your own child pass out or to get a phone call from the school, hospital, or police dept. that your child passed out and you need to come right away. My heart goes out to you. I hope your child will get on the right drugs and will not experience the bad side effects that go along with this disease. And always have hope that the medical field is moving fast and our children will probably see a cure in there lifetime. one last thing, because you have it too, you will be able to understand and be able to give your daughter the support that most family members will not be able to. This is a plus for the both of you. You can let this be the one thing that brings you and your daughter closer together. Well I have written enough so I will stop now. just know that you are not alone in dealing with the family link. Good Luck to you and your daughter. Joline
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