Maxine

Ericka, I'm praying for you, and hoping they can help you right away with this. They need to figure this out! I wish I could be there to advocate for you, as I know how difficult it is to do that when you're weak and vulnerable. Keep us updated when you are able. I wish you had more support there! HUGS, Maxine :0)

BellaMia, You have been so supportive of others, and of course offering your support to me when times get rough. I just wanted to thank you for that, and for just being the kind of compassionate and loving person that you are. Your mother is in good hands though this time of transition to be with her beloved husband. Be extra gentle with youself, and allow hospice to do their thing in helping your mother and the whole family through this. HUGS to you. Maxine :0)

Lieze, I sent you a PM, as I never know who is reading my posts here. Maxine :0)

Reading all of this makes me sick! It is the responsibility of who ever is in charge to make sure there is adequate staff to provide the patient with the best possible care. (I don't think this is necessarily the doctor if they work in a hospital office) a lot of doctors try to find help--(other doctors), but I have had one actually tell me, "there's no money in it", so doctors don't want to specializer in this area. As far as I'm concerned there is no longer any excuse on lack of knowlede on POTs and ANS dysfunction! It's TIME----time for the Docs, and other medical staff "get it". It's really not rocket science, but it is a frustrating science. ANS dysfunction can lead to a cascade of other secondary health problems, or other health problems can lead to secondary ANS problems. They don't necessarily have to specialize it ANS dysfunction, but it would be nice. If they are just respectful, return your calls, and try to work with you, things could be peaceful for everyone. I edited out some of my post, as I think this is better suited from PM or e-mail. Maxine :0)

I'm so sorry to hear this.... Please let Nina know my thoughts and prayers are with her. Maxine :0)

Hi Janey, My gut problems are all the time, and most likely related to the EDS. I've always had problems most of my life, and when I was 13 years old I went inot the hospital for a full workup, but they didn't find anything back then. Now I have multiple diverticuli---3/4 of large bowel, and small bowel has a 5cm diverticuli. I have a difficult time with slow bowels, and I'm bloated most of the time. It's almost strange for my bowels to actually work right----that's how bad they are. My upper gastric motility is normal. MY bowels are probably too stretchy, and now at age 50 they are stretched out-----thus the multiple pockets in every corner of my bowel other then ascending colon-----which is the only part spared. I imagine my guts are twisted up pretty bad. I don't have extreme pain/cramping-----just a lot of discomfort, gas, bloating.... My symptoms probably get worse throughout the day because of the EDS, as gravity is so hard on us due to the poor vascular tone/blood pooling. My BPs are usually low in the morning, but I feel worse with them at night because my body goes into hyperdrive trying to fix things, and by then I'm already wiped out just trying to get through the day. I'm on disability now, but have worked almost 22 years in my life, and went to school for about 2 1/2 years in late 30s and early 40s. I finally filed when my body started shutting down just from getting ready to go to job interviews-----then I realized, how would I work all day when I'm wiped out before getting there? It took me about 2 years before I could admit I couldn't work. I have so many spine problems, and the stress of moving around makes me worse as the day goes on with that also. In addition I have the central nervous system affected from lesions in my brain, and the upper spine compression. Sometimes when were out doing something, my body just freezes up, and I can barely make it back to the car. This is my reality. We just try to work around all this. I notice you have EDS also. I think my only motility issues are related to small bowel and large bowel. Usually food goes through my stomach in the normal time, but once it gets to small intestine---it just likes to sit there. Maxine :0)

So sorry you lost your sweet doggie............sending you a BIG HUG........... Maxine :0)

Janey, it's great to see your doctors doing thorough testing of the OI during different stressors. This is something that should be done on all tilt table testing. My symptoms get worse as the day goes on, and this type of testing could help tell the difference between primary dysautnomia, and dysautonomia secondary to something else like EDS, upper spine/brain stem compression, ect. Flop-----that's weird they tilted you back up and hour after you drank the shake! It's should be within 10 minutes. My belly blows right up, and my blood pools right away after eating. I hate this, and can never eat a regular meal. Maxine :0)

EDS can cause secondary neurological problems, and many folks with EDS have MS, or have upper spine/cranial instability that causes more neurological deterioration. There's collagen all over your body, including the myelin sheath. http://msj.sagepub.com/cgi/content/short/14/4/567 http://www.neurologyindia.com/article.asp?...1;aulast=Mathew I have several lesions in my brain, but docs have not diagnosed MS----- (uuuuuhhhhhhhhh----"we don't know what's causing them",,,,,,,uuuuhhhh, maybe migraine.....uhhhhhhh----duuuhhhhhhh....eeeeeeerrrrrrr...I don't know.... Maxine :0)

Thanks so much for your replies, support, and understanding. Please forgive the spelling errors and typos on my first posting. I was way to tired to correct. I neck is so bad it's difficult to spend a long time on the computer-----even on my lap top. We never did get out driveway done, and it's piled with about 4in. of snow. not a huge deal but my husband has to work another 10 hours today. The thought of him coming home to do that make me worry. We asked a guy around the block who has a plow to do out driveway, but he never showed up. there's an older kid a couple doors down, but his mother said he wasn't home, and would have him contact us. He hasn't showed up either. I guess Mackenzie was OK last night. She may have eaten too much at once for lunch, and the snack put her over the edge. She's in the 97th percentile in weight for a 2 year old, and 87th percentile for height. Her doctor wasn't concerned about weight, as it was in the right weight for her height. He said she's just going to be tall. My son is about 6ft. 1in., but his wife is only 5ft. 2in. She has a huge appetite. They eat healthy things, and limit sugar. Back to being overstimulated. I woke up this morning, and my BP was high just after sitting up. I only slept about 5 hours. It was 139/90, and pulse was 77. I'm on beta blockers (propranolol 20mg 3 times a day, and Klonopin .50 once daily). I usually only take half my dose of klonopin, and I stuck with that even though I felt bad. It wasn't an anxiety thing, I just couldn't get my body to calm. This is a milder spell then the ones I used to get before being diagnosed with POTS, and all my other junk. I also take 100mg. of wellbutrin in the morning. I wonder if I forgot it yesterday. I take to to help my BP from getting too low----even though it still does. That's why I was kind of surprised at the BP jump. Maybe the wellbutrin does something with my brain to prevent my body from becoming overstimulated. I noticed my BP went down when I layed flat with head slightly elevated. It went down quite a lot. I'm wondering if the stress on my lower cranium due to the odontoid bone pressing on the brain stem from the instability could be messing with my BP also. I tried to go back to sleep this morning, but I couldn't sleep----my body still feels a little overstiumlated, but last BP was 105/70---pulse 66. I felt safe to take my synthroid, and just took my BP, and the BP is stable at 100/72, pulse 68. This is my usual when just sitting around taking it easy. As soon as I get up and move around this changes. Dr. Grubb said my ANS dysfunction is most likely related to the EDS and upper spine compression---(I also have congenital cervical spine stenosis). I was just back in my e-mail deleting mail from a long time ago. I was reading some of the old responces to e-mails I sent to two EDS geneticists about how frustrated I am getting local docs to believe I have cervical/cranial instability. One of them said, " I am sorry I don't have any creative ideas. The trouble is that there is no data on what works (including surgical approaches) for cci in the setting of joint laxity. All I can say is that try not to have your neck unsupported and if a position starts bothering you, change positions immediately. Don't let yourself sit or stand in one position too long. I am sorry I have no great solutions." There's little understanding in the medical community on CCI related to EDS, and it's very difficult to see. Most of the time, nothing gets done until a lot of damage is already done. I also have the vertebral artery issue in the same area, and I was told by one of the EDs doc to be careful of BP spikes. That's another reason I get nervous when this happens. I guess I need to be more careful not to overdo it, but my husband has worked so many hours, and it's difficult to make him come home and work more. You all take care, and thanks again! I hope you all have less overstimulation in the future. Sad, that fun things are too much for us! I con't go to the movies anymore because it's like being in the middle of a tornado for me, and I can feel the vibrations of the loud speakers go right through me. I can't even stand to be near those cars with the loud speakers----thump, thump, thump! HUG to you all! Maxine :0) I hate this snow---------------BUT I could be in Haiti with my whole family buried under my house. Could you imagine that with POTS? How horrible for those people. I hear people in NJ have snow that won't stop----it just keeps coming.

I was just sitting here thinking about my body being so revved up, as I've been going through so much lately with my neck instability issues, and it's affecting my POTS the more I try to function physically, or if I get over stressed. Today my son came over to help snow blow our driveway---(it's a big driveway----wide near the garage), and he was bringing out two beautiful granddaughters with him for my husband and I to watch for a couple hours this evening. My son had to work, but came early to help out becuase my husband worked 12 hours in the snow delivering mail all day. Anyway, he shows up---I open the back door, and there is little Mackenzie with Vomit all over her. The poor thing was all shaken, as this is probably her first time of this happening when she can realize what is going on-----she's 2 years old now, and really advanced. Right away my body goes into panic mode, thinking about a virus----if she has something I'll get it. I didn't mean to NOT think about her----I did that too. My son brought her into the house and put her into the tub. She seemed fine once we threw a few toys in there, and washed her up. My son did all the work, and I went around the house disinfecting everything. I told my son to throw her clothes and coat out. We had clothes, and he can wrap her in a blanket to go home. After she got out of the tub, she was doing fine---- even playing. She didn't have a fever, so who knows what it was. She came straight from day care. Meanwhile, I'm trying to get things in order, and make some dinner. I feel terrible, as a little short trip to the store to pick up something for dinner wiped me out. I felt like collapsing at the check out. I had no business going, but my husband wasn't going to get off work until 8:00pm. 12 hour day! we had food, but nothing to put together for the girls and my husband. I can eat soup or whatever, but my husband needs a good meal. We have not been able to go to the store together for a long time-----we can't even get to costco to use our bonus check----whatever it is. We are so behind in stocking up. I was such a mess already, then my son comes in with the other mess. He decided to get her cleaned up and take her and Kaela home. He called work to let them know he was coming to work later. By then his wife will be off work. When he left, I finished wiping down the bathroom, and making dinner. I couldn't eat the dinner with my husband. Finally I grabbed a few mashed potatos, and a tiny amount of peas---no meat. I picked at it, but finally finished it. MY belly was bloated way out----I looked 8 months pregnant. I took my blood pressure, and it was 118/85, and pulse was 90. This was pretty high for me, as I had taken my klonopin early because I knew my body was stressed. I was surprised my HR got up to 90. I took my bath, and noticed my head and neck are throbbing again. I took my BP and it was 157/101! My HR went down to 84. I'm think no way, so I took it again, and it went down to 135/89, HR of 77. Next it was 139/90, pulse 75. I thought maybe I'm so overstimulated, and it might be putting more pressure on my already miserable neck and cranial area. I thought I would try taking my BP laying down to see what happened. It went down to 111/81, pulse 72. I sat up and took it one more time, and it was 115/75---pulse 68. That WAS WEIRD! I have so much pressure between my ear and cranial area lately, and my POTs get worse when that does. I haven't been going out of the house much at all, and if I do my husband is with me. the weather is terrible around here, and way to draining for me. It doesn't take much for me to be over stimulated, and today was very stressful---physically, and mentally. Yesterday was the 3 year anniversary of my mother's passing from cancer---(you all know they didn't find it until 48 hours before she died, and put her through horrific times from medical neglect). Ant it was the 1st anniversary of my brother Joe's death from Cancer on Feb 16th. Maybe it's all piling up on me. We also went to a wedding reception Sunday, and there was a Jeerry Springer moment with couple of the guests. About a week or so ago I watched a move on HBO about Temple Grandin. It was very moving, and when she talked about people not uderstanding her, and how hard it is when she gets overstimulated, I cried---I coudln't control the tears. I know that feeling-----(I always refer to it as wanting to climb out of my own skin). If I didn't have this the rest would be easier to deal with. http://en.wikipedia.org/wiki/Temple_Grandin How many of you feel feeling overstimulated is one of the worst symptoms? It paralyzes me.....I'm good for nothing, and I get really mean when i'm like this. I don't want anyone to touch me, and a HUG feels like restraints. I wonder if people with autism have some for of ANS dysfunction? Seeing that moving made me think, and it also made me have a much better understanding of what people with autism go through. Claire Danes does an excellant job playing Temple Grandin. http://www.hbo.com/movies?cmpid=s6#/movies/temple-grandin http://www.imdb.com/title/tt1278469/ Well After little Mackenzie---aka Kenzie went home, she was fine and ate a peanut butter sandwich. She requested a fork to eat it with---lol. She's been using a spoon and fork for months. I have to post a picture of those two. Take Care, Maxine :0)

I'm glad your doctor is taking you seriously, and seems to be trying to help you. PRAYING FOR YOU! Keep positive thoughts. Maxine :0)

I'm so sorry this happened to you. I know exactly how you feel. I've been on this same boat. I just had a 3D CT scan that had over 1000 views to catch the instability in my cervical/cranial instability. I've had many MRIs and a couple of CT scan-----all that picked up abnormalities ranging from congenitally small posterior fossa/chiari-0, congenital cervical spine stenosis, many bulging and herniated disks, one completely desiccated disk, fluid in mastoid area for 5 years (but no history of ear infections per full ENT work up this summer), missing left vertebral artery resulting in an enlarged right vertebral artery, brain lesions, pannus growth on odontoid bone, and a broad based disk bulge on C1-2. I have mechanical problems-----this is on top of the EDS and POTS. I also have hashemotos thyroid with very high anti-bodies. My head feels like there's a vice in there trying to push out both sides of my head, and now I have something sticking out in the back of my throat. The 3D CT scan was read as normal----no instability. This scan was done with my head turned to the right and left. It's a scan my orhtopedic surgeon is doing now to try to prove this instability is REAL. My EDS geneticist and I were both excited that this might finally be the "proof" these other dismissive docs need. Nothing worse then feeling horizontal subluxation of your head off your neck, slurring sppech, sudden weakness, drop attacks, confusion and other fun symptoms, and then be told your imagining this. We have to do our own research. I know someone in Calf. who's situation is almost identical to mine, but she was told to go to a major hospital for shunt placement due to CSF pressure in her head. When she went they dismissed the whole thing and told her she was nuts. She was so happy to finally get this pressure out of her head, but then got the life shocked out of her when she found out the whole thing was for nothing. It felt like a bad joke---- I e-mailed my EDS doc, and he said the radiologists are not familiar with this type of CT scan, and have nothing to compare it to. Doctors who are familiar with cervical cranial instability related to EDS are trying to work with radiologists right now to understand what to look for. I would not continue to pursue this if I wasn't the train wreck I am, and if NIH didn't confirm this instability-----but they did, and they are one of the big boys, so you can't deny their opinion. Everyone is getting tired of lazy doctors. There's no passion for HELPING patients, and the ones that do have passion are overloaded because of the arrogant and lazy docs. It's Sad many of us feel like it's going to take a catastrophic event to happen to us to be taken seriously. I hope I don't have a stroke---or worse.......... Don't stop doing what you need to do, even when you feel like it's the end--------and ask for a copy of the clinical notes, so you have those words in writing. Then if something happens, you have their words on record!---- Good luck to you. BIG HUG, Maxine :0)

Congratulations! I understand about being depressed even though you're happy about being approved. It was pretty shocking to hear my health problems are "progressive", and there's no job out there that I can do. It's bittersweet---------------it's great finally getting approved, but people need to understand we lose more then half our income, and it's depressing not being able to be in the working community anymore. I just hope they find better ways to help us, so we can all go back to work, and do the things we used to do. Maxine :0)

Great Article. I hope he does out grow it. It doesn't surprise me about the misread on the tilt table test. I think doctors need to look at ALL tests results. Sometimes people are nervous when doing the TTT, and it could mess the numbers up-----giving a false negative. Even though my TT was negative, Dr. Grubb diagnosed the POTS based on my history, and other testing. I was lucky to have him near by, and I ended up with an appt. based on one of my many ER visits to the hospital he works at. A smart doctor finally figured something other then indigestion might be wrong. My heart rate did go up, but more slowly because I was on my beta blockers. I refused to go off meds because I was so weak, an felt so sick I didn't think my body could handle it. The Cardiac nurse and doctor doing the test said I could do it on my beta blockers. My BPs get very low, as doctors have witnessed on many future office visits. Maxine :0)

Although I was there for genetic testing for lynch syndrome to see if our family has this, we still have to give other health history. I was surprised he knew about EDS, but not POTS. Interesting. We went into the whole reason I can't have a colonoscopy due to the cervical/cranial instability, POTS, EDS ect. He saw that I had a Double Contrast Barium lower GI with AIR, and he said this is a good screening test for colon cancer. He said it wasn't as good as a colonoscopy, but it's good. This was two years ago, and he's going to look at the films to assess weather further testing is needed. Most of the time we went over our family tree. My mother died of terminal cancer in 2007, her brother died two weeks after of colon cancer, my brother died of colon cancer Feb. 16th, 2009, and my aunt had brain cancer and died in 2003. My brother was diagnosed at age 48. This is good reason to do the genetic testing for lynch syndrome, and he was going to test my brother, but he didn't want to do it. He felt that it's a good possibility we won't have this gene for lynch because both my mother's parents did not have cancer. My grandmother died of heart failure at age 89, her father died in his 60s of a massive stroke---(drank too much), and none of their siblings had cancer----on either side. However, he still feels testing needs to be done. I said I have digestive symptoms all the time, but no severe pain except of the two times I had flair ups on my large diverticuli in duodeum--(upper small intestine. It's 5 cm. in size, and there was some fat stranding from the flair ups. I told him I got the you know what scared out of me when the CT test was done in Nov. 2006 on the abdomen that mentioned possible neoplasm--(but not likely) in this area. He said, no wonder I was scared with a diverticuli this big. I was a little surprised, as none of the docs made a big deal out of it. However, I think they kind of lay low because surgery in this area is only done as a very last resort due to the complicated area----it's near the biles ducts ect. If I'm not having major symptoms then they don't worry about it. BUT, I do bloat A LOT, and I can never eat a full meal. I get full very eaisly. I also have constant discomfort in this area, but like I said, no severe pain. I have dull aching---and a full feeling. Sometimes it feels like a small baby fist in my side. I think the only way to get a good look at this is with a upper endoscopy, as they have been able to see this before with a scope in Feb. 2001. they didn't seem alarmed then either. I think time is running out with this, as I think it's starting to give me more problems. The oncologist was VERY nice----very sweet man. He looks like he's in his 40s. My brother and his wife really liked him. He wants to help our family. He said he's going to check into how we're going to do the testing, and has me coming back in a month. He said he'll call me in a week to let me know exactly what testing will be done. He didn't feel my blood work history had any significance as any signs towards cancer. I asked him about the elevated IGA levels, and he said they were only mildly elevated indicating inflammation-----most likely due to the spine issues. White count has been elevated, most likely due to flair ups with large diverticuli in small intestine. They have my CTs of abdomen, and lower GI on file, as he's affiliated with the hospital that did those tests. I said that my POTS symptoms seem to be the thing making me the most symptomatic, and that would make me more sensitive to certain tests that require sedation, but again this is caused by the EDS. My PCP and the surgeon I saw regarding the colonoscopy are more concerned about the spine instability, and apnea combined. Intubation could cause serious problems to an inexperienced anesthesiologist not familiar with upper spine instability near the airway. Maxine :0)

Hi Shimoda, It's hard to say what my underlying spine problem is, but from what I understand the EDS (ehlers danlos syndrome) is what caused my spine problems. I think they got worse from a car accident I had in 1977. I was the passenger in a small car (yup, it was a ford pinto---lol) . A man with a large Ford LTD turned in front of us. I didn't have a seat belt on, and my head hit the windshield straight on-----the top of my head. (of course I wear a seat belt now----and have since that accident)---I was a dumb 18 year old. It was soon after this I noticed a lot of neck pain, and headaches in the lower part of my head. Docs blew me off over the next few years, but finally one doctor found a healed over fracture through a open mouth x-ray many years later. The fracture was a compressed fracture, and it was small. As time went on, the DAILY pain subsided, but my neck was never really right after that, and I still had intermittent pain. In late 1982 I went to a chiropractor to have my neck manipulated. By then I had a 5 month old baby boy. It was a couple weeks after this I noticed panic attack with tachycardia----heavy thumping heart beat. My mother gave me some of her phenobarbitol back then, and it worked like magic on the attacks----like they never happened. I was concerned about addiction, and weaned off them in a few months. My "attacks" didn't happen again until 1990, but I was diagnosed with MVP along the way. Nothing about my spine was brought up by me, or any of the doctors I saw back then. My health crashed badly in late 2000. Still nothing about my spine was brought up, and any pain I had was just something I wrote off as being caused by the car accident in 1977. After Dr. Grubb diagnosed POTS in 2001, I told him I had neck pain that sometimes spread to my shoulders and right arm. I know he's not the right doc for this, but I ust brought it up in passing. I asked him if he thought I should have an MRI. He wrote an order for one, and it turned out I had a herniated disc. He suggested that I have it checked out. Local docs were dismissive, and said it was nothing. However, numbness in my arm, and further pain pressed me into seeking another opinion with a neurosurgeon who was familiar with POTS, but I had to travel to Chicago to see him. I sent my MRI to him first, and he said it looked serious enough for further testing. I went to Chicago for two days of testing, including another MRI and a CT scan. The surgeon came into the examining room and said I had a very bad neck. He said not only do I have two badly herniated dics, but I had a small poster fossa--(lower skull), and congenital cervical spine stenosis. We scheduled surgery for the herniated discs for the following month. He said another car wreck could paralize me. It was from this point on that I ended up with many other problems with my spine-----as you can see in my signature line. The cervical/cranial instability is the focus right now, and there's also a badly desiccated disc in thoracic spine on the t-8 level. I have a possible vascular issue from a missing left vertebral artery on the left causing possible vascular congestion on the right due to the right side trying to compensate for the left missing artery. I recenly noticed a bulge in the back of my throat, and the little bony areas behind my ears are also painful. I'm getting headaches on the right that are thumping, especially when I move my neck, or when I walk. It doesn't take long before I'm up in the morning for the pain to start up. I got diagnosed with EDS after I was told about my spine problems. The conclusion is that my EDS is causing the whole mess. The EDS causing unstable joints and ligaments, and poor vascular tone-----weak vessels. I have brain stem compression from the cervical/cranial instability causing pannus tissue growth on the odontoid bone covering the first two vertebrae-----this in turn presses on the brain stem anteriorly. There is an orthopedic surgeon watching things, and it's looking like surgery my be the only option to fix this eventually. However, I have the vertebral artery issue also, and a neurosurgeon needs to address this if this is even an option. First we have to get a surgeon to understand this isn't normal................obviously there's an issue as the vertebral artery on the left is missing on my brain MRAs, but the ultra sound picks it up in my neck. NIH said it's clearly missing in the brain-----but what happend to it between my brain and neck..........hmmmm......could this be causing my headaches, slurring speech, blank memory, clumsy hands, difficulty in walking, numbness, twitching, and other issues???????????? Upper spine compression can definately aggravate POTS, or even cause it. I must caution you that even people diagnosed with upper spine problems who have had surgery still have POTS, or autonomic nervous system dysfunction of some form. Some have shown improvement to the degree of leading almost normal lives. For people who have EDS, spine problems are only part of the problem. Not everyone with EDS has spine problems, and the poor vascular tone caused by EDS causes orthostatic problems due to blood pooling in lower limbs. The best thing to do is have a good POTS/ANS specialist. If you think you may have a serious spine problem, see if your doctor will order an MRI to rule it in or out. Seek more then one opinion on this. Local doctors blew me off, and both my POTs doc and I thought the problem was more serious. Good luck to you--- Maxine :0)

Hi-----------------I know they say younger people have a better chance of recovery then others, but it can take a while-----sometimes 5 years. I guess it depends if the POTs is primary, or it's secondary to something else. My POTs is secondary to my EDS(ehlers danlos syndrome), and spine instability at the cervical region. http://www.ednf.org/ Some people with POTS have had great experiences at Mayo, and some have come back very dissappointed. I don't think they should base recovery like this--------as there can be so many different variances of POTS/dysautonomia. Don't give up. Recovery could take loger, or it could wax and wane. A lot of people start out with quite a POTs crash, then improve, but don't return back to where they were before POTS. For some who receive good treatment can lead almost normal lives. Being put on the right formula of prescriptions can be the key in feeling better. Some people do well just with salt loading, and keeping their fluids up. If possible, exercise is important to keep muscles fit to prevent deconditioning which can make things worse for people who have blood pooling and poor vascular tone. If you can't tolerate gravity, then exercise in the pool is an option since gravity isn't an issue there. I know I've had POTs my whole life, but my symptoms were mild until I reached my 40s. I didn't know what I had until my 40s. Up until then my symptoms were just tachycardia, and it was controlled with beta blockers. For many years I didn't need any meds. My first symptoms appeared when I was 22, and back then I was diagnosed with MVP ( mitral valve prolapse ), but since then have been told I do not have MVP. I did not need medication from age 22 to 1990. In 1990 I wasn't able to control the tachycardia without beta blockers. From 1990 to 2000 I felt good on the beta blockers for the most part, and I was able to have a normal life exercising, working, ect. I hope this helps a little. I hope you have improvement with your symptoms soon. I know I did for quite a long time. I'm not bed ridden now, but I'm quite limited, and now on disability. I have other problems in addition to my POTS though. I fight to stay out of a scooter or wheelchair, but at some point I may have to deal with that in order to go to places like the Zoo, or an amusement park. I can't walk long distances without symptoms----severe weakness, near syncope, and heart flips flops. We went to the Zoo in Dec. to see lights before Christmas, and I made it, but barely. Take Care, Maxine :0)

Thank you! Yes, I've been on EDNF site. I joined a while back. I may go to the EDNF anniversary conference in Baltimore. MY EDS doctor (Dr. Brad Tinkle) is the Key Note speaker. When I talk to the oncologist, I will find out about how we can get this colonoscopy done without sending me into a POTs tail spin, or damaging my neck further. I'm not too worried about damaging the bowel-----but it IS something to watch very carefully with the EDS stuff going on. I have a lot of diverticuli already. I appreciate your support very much. Maxine :0)

Thank you so much for you support--- This is a difficult thing, and in fact valintines day is the day my brother went into the hospital for the last time, and his body was overtaken by the toxins after the cancer spread to his liver. He held out for about 2 years since he found out the cancer spread to his liver. I'm not an openly emotional person, but when I saw him after his mind left him, it was heart wrenching. I almost fell to me knees seeing him like that. I didn't expect it, as I didn't know this could happen with the toxins---------------and he was also very good at hiding how he felt. He was able to communicate normally until Valentines day. He spent many of his years in the navel service, and was in the hardest battle of his life, and he fougt like the bravest soldier I have ever seen. I know I need to get this colonoscopy done somehow. My NECK IS THE BIG ISSUE HERE........ . It's really bad right now, and I'm having lots of headaches which is out of my usual pain. I'm having lots of other rpoblems because of it, and it's affecting my breathing even during the day. I can't even walk very far without feeling like collapsing. My husband has a concert on Saturday night, and I have no idea how I'm going to keep it together for the concert. We also have to go tonight to help set up for the concert. I usually help set the tables. Looks like tonight I'll be folding napkins. It really a big mess, more then I can get into here. The good news is that my PCP is trying hard to help me get this cervical/cranial instability (CCI) to be taken seriously locally. The surgeon doing the colonoscopy is more concerned about my neck, and concerned about the sedation ( intubation would be a problem if the sedation drugs were too much for me), more then hurting my bowel. She uses a pediatric scope, and is one of the best at this. She did my brother's bowel resection, and I have never seen such a perfect incision. She does take my problems seriously, but the concern is the other staff around her trying to understand the scope of my CCI. She is one of the kindest doctors I have ever met outside of Dr. Grubb, and my EDS doctor. We're still trying.......... Maxine :0)

I though some of you who deal with any type of chronic illness might find this interesting, especially those with EDS. http://www.ncbi.nlm.nih.gov/pubmed/1992527...$=activity I can't believe they have something like this out there-----pretty cool. My friend who has EDS and cervical/cranial instability (CCI), and many complications because of it sent this to me. she has sent many other abstracts also. Please PM me if any of you are interested on abstracts related to vagus nerve compression related to CCI----or NOt related to CCI. It can cause a lot of problems. She has sent a lot of interesting information to me. Maxine :0) Maxine :0)

I don't know if read what I posted a while back, but someone responded about testing for lynch syndrome. here's a link to the thread; http://dinet.ipbhost.com/index.php?showtop...=lynch+syndrome Anyway, thank you Anna for sending me a PM on this. I called my brother's oncologist, and the receptionist and I had a short discussion about my family history. She remembered my brother Joe. A couple weeks passed by, and no phone call back. I just figured that this was just another dismissal. However, something in the back of my mind said this doc won't let this go----as he wanted to test my brother for this, but my brother didn't want to deal with any more testing, and I'm not sure he understood the full reason for this testing. MY brother was a brave soldier thoughtout his brave battle with colon cancer. In fact it will be a year on Feb. 16th that he passed away. He went into the hospital on Valentine's Day. He tried to fool everyone on how bad off he was, and sometimes it worked. He didn't want anyone to be feel afraid. I can't think of a better thing to in my brother's memory then to get this genetic testing done, and it's strange that the appointment with his oncologist is Feb. 16th, one year from my brother's passing. I just noticed this now as I typed. Now I need to get all of my blood work together, as the oncologist wants to see all of it. My PCP has to find a way to get a colonoscopy done safely. My POTS has been pretty bad, and I know it's because my cervical/cranial instability is worse, and the swelling near my clavicle has been worse. I'm just plain worn out. However, I understand why both my PCP and the surgeon who would do the colonoscopy are concerned. I have apnea, and the EDS geneticist said it's most definately CENTRAL sleep apnea due to brain stem compression, and the big concern is the low BP, and cervical/cranial instability with the sedation/anesthesia. If I needed to be intubated, it would be a problem due to the CCI, and intubation is a reality with the apnea issues, as my breathing is affected while I'm awake, and just the propranolol alone gives me trouble sometimes. I'm sure in the right hands I'd be OK, but I don't have any idea what I'm up against, as the lower bowel is littered with diverticuli------75% of IT! Who knows if the bowel is OK enough to be poked and proded with the scope? The general surgeon is the kindest woman, and she's taken all of this seriously, and trying to weigh the pros and cons of all this. It's plain scarey. Especially with the pain I'm having on the right mid cut near the large 5cm diverticuli in small bowel. I had diarrhea on Sunday, and I never have that. I didn't have the flu, and everything I ate was noting out of the usual for me. I didn't have nausea, and my appetite was normal other then getting full really fast like I normally do. We went to my brother and other sister in law's house to take a meal over because she had surgery, and needs all the help she can get. I munched on some fresh veggies, and I hate to be gross, but the broccli came out looking the same way a couple hours later. It went through me so fast. I've never had this happen that I can remember. I'm kind of concerned. I always have that kind of a cramp type pain over there, and sometimes I can't tell if it's pain radiating from my desiccated disc on T-8----thoracic spine, or if it's my gut because sometimes it will spread across the spleen area, and can be breifly intense and sharp. Then I have this fear of the doc finding something horrible up there with the scope. I just can't wait to get past all of this. Maxine :0)

Another good Doctor is Dr. Brad Tinkle Md PhD from Cincinnati Children's Hospital----he's a geneticist who specializes in EDS and other connective tissue disorders. I know Dr. Francomano is great too-----as Mkoven said. She's also a geneticist. I was in baltimore, but didn't see Dr. Frankomano. I saw Dr. Nazli McDonnell who is also a geneticist----she's running the EDS connective tissue study at NIH. I was involved in the study in April 2008. Here's link's for all of them; http://www.gbmc.org/body.cfm?id=67 http://www.grc.nia.nih.gov/branches/lci/nmcdonnell.htm http://www.cincinnatichildrens.org/svc/fin...brad-tinkle.htm I hope this helps! Dr. Tinkle is my regular EDS geneticist that I see yearly. Dr. Wenstrup was the first geneticist to diagnose the EDS, and he has been replaced by Dr. Tinkle. Dr. Wenstrup has moved to Colorado, and I think is more involved in research. I think that's what I heard---don't quote me on that----- . Don't lose hope----a famous doc that we all know didn't think I had EDS, and even though he's one of the best POTs doctors who has knowledge of EDS, I knew he/she was wrong. I had subluxated my right scapula, and had a lot of instability in my neck in addition to hypermobility in many large joints, and some small joints. This doctor has since been further educated, and I have his full support on the EDS diagnosis. It's a good thing I went with my gut feeling on the EDS, as the EDS has been the cause of all my problems, and even my PCP recognizes the seriousness of EDS, and how destructive it can be. EDS can be very serious. Maxine :0)

I'm sorry I'm responding so late Babette--- I read this yesterday, but I was having a bad day, and wanted to think about what to post. Your symptoms do sound connected to some kind of compression of your upper cervical spine, or brain stem from possible cervical cranial instability (CCI). I was diagnosed by the chiari institute (TCI) in Manhassat Ny--(Long Island) by Dr. Bolognese) in 2004/2005 after a series of tests. MRI, 3D CT scan, and physical examination. I have not heard great things about TCI lately, so I chose to keep a low profile with them, and move on to a second opinion. I got a second opinion by another orthopedic surgeon recommended by my EDS geneticist. The EDS doctor thought it needed further investigation, and I had more testing, and the orthopedic surgeon said I had instability, but did not push surgery at that point (over a year ago), but feels I may need it now. The pannus growth on my odontoid bone is indication of instability, but MRIs and CT scan have not picked up enough for the average neurosurgeon of orthopedic surgeon who is not familiar with this type of instability caused by atlantoaxial instability. Surgeons and radiologists do not understand the connection of CCI and EDS. http://www.ncbi.nlm.nih.gov/pubmed/8596160 I have had abnormalities show up on many MRIs and CT scans, including many herniated discs, congenital cervical spine stenosis, the pannus growth on odontoid bone, and a broad based disk bulge on C1-2-------which is basically the CCI, but the radiologist doesn't know how to read the MRI. It's a daunting task trying to get neurosurgeons to take this seriously. I keep trying because when I went to the NIH EDs study in Baltimore, they also confirmed the CCI. I have also had fluid showing in the mastoid area on many brain MRIs sine 2005. This has been there almost 5 years, but there's no sign of ear infection, past or present. I just had a full ENT workup, and NOTHING. Why is the fluid there? I also have partially blocked spinal fluid, and this was found at TCI in NY. This was on a CINE MRI report. Blocked CSF fluid can give the appearance of mastoid fluid also.... http://www.asap.org/articles/cine-mri.html Lesions have also been found on my brain. Dr. Dan Heffez was actually the first neurosurgeon to find abnormalities on MRIs and CT scan in 2002. He did cervical spine surgery in June 2002 to replace two badly herniated disks in c5, 6, and 7. He also fused and added a titanium in the area. He said I have significant cervical spine stenosis, and a small posterior fossa. He said I could have chiari---maybe a grade -0-, as the brain herniation is only 1mm. I also have a missing vertebral artery on the left, and an enlarged one on the right compensating for the missing one on the left. Now I have and edema type swelling on the right side of my neck near my clavicle which could be vascular congestion. I recently had an ultra sound of my carotid arteries, vertebral arteries, and subclavian arteries. She found there was flow in the left vertebral artery, so it's very strange--------flow shows in my neck part of vertebral artery, by two MRAs show the vertebral artery is missing in the brain-------DEFINATELY NOT THERE, as I even saw the films. You can clearly see the carotid arteries, on one medium sized right vertebral artery, but NOTHING on the left. NIH confirmed this, and Dr. McDonnell reported this in her clinical notes when I was in the study in April 2008. http://www.grc.nia.nih.gov/branches/lci/nmcdonnell.htm http://www.grc.nia.nih.gov/studies/ctd.htm A friend of mine from California---(we have never met in person), but we have talked on the phone for over a year. She has almost identical problems to mine, but I think her's is a little more advanced. She has been struggling to get this taken seriously for years. She's had surgery in the area for something else--(I can't remember what type), but she has EDS, and dysautonomia along with many other health problems. MAny problems with the vagus nerves can result from this also. She has been kind enough to send me many articles on this, and other problems related to CCI, and a couple of them related to CCI and EDS. It's stunning the problems that can happen from this. One of them is definately dysautonomia/POTS/ANS dysfunction. My EDS doc said there's not enough clinical data on the relationship of EDS and CCI. In other words---(PROOF). Docs want to see radiological evidence. My PCP is working with radiologists here to take the right type of MRIs and CT scans. The orthopedic surgeon recommended by my EDS doc has been doing new types of CT scan with head turned to the left and right verses the flexation/extention MRIs/CTs. It's difficult for flexation/extention testing to pick up CCI related to EDS, as the mechanism behind this type of instability is different. I'm fortunate my PCP is taking this seriously, as he will be talking with a radiologist out of Harvard who is working with a local hospital who is replacing their entire radiology staff. Since my PCP is interim chief of radiology, he should be able to have a discussion with this Doctor from Harvard. We discussed this last week, and hopefully I hear something soon. I was scheduled to go to Cincinnati to see the orthopedic surgeon, but I was sick, and had unstable POTs symptoms from traveling. There's was also problems with black ice between northern Ohio and southern Ohio. I will reschedule when I have the CT scan taken if they'll do this type of CT here. If not I'll have it done in Cincinnati before my appt. with the orthopedic surgeon as planned previously. When I have more time I will post some of the information I have on vagus nerve complications from brain stem compression, and subclavian artery issues. I have other abstracts and journal articles also on Chiari, and CCI. This is a very misunderstood condition by the medical community. I also have a neurologist from the Cleveland Clinic who is working with me, but is more focused on the brain lesions, although he is trying to understand the EDS/CCI connection. The two surgeons I saw there didn't feel the problem was significant enough----despite the other confirmations, and fluid buildup, and many symptoms that are related. One orthopedic surgeon was so arrogant, and ignorant about the EDS and instability---(I doubt he even read the wealth of information on my history from the clinical notes I organized for the Cleveland Clinc.) I confronted him, and said, "is this the Cleveland Clinic"? He said yes. I said, "are you sure". When he recommended aerobics, I knew he was being a sarcastic jerk. I suppose the first neurosurgeon I saw there wanted to teach me a lesson by sending me to him for a another opinion since he didn't think my CCI existed, and his notes reflect that this is in my imagination, in so many words. The problem is that I taught HIM a lesson, as I reported his rude and obnoxious behaviour. However, when patients relations took my information, I'm sure they were just appeasing me. Docs like that never get disciplined. MY EDS doctor is hoping for better radiological evidence to present to the CLeveland Clinic. This is all I can post for now, as I have to go for now. I will post more later. I will say surgery is a LAST resort, and you definately want several opinions----surgery doesn't always fix the problem entirely, and some people actually get worse. Take Care, sending you HUGS. Maxine :0)...............please forgive typo errors, I don't have time to correct now.

I wish doctors would get their act together and help us find out more answers on the mechanisms behind dysautonomia. I don't know which area of medicine------ endocrinology, neurology, or cardiology would be helpful in figuring this out. I know a gynocologist would be useless, as mine looked at me like a deer looking into headlights when I mentioned my dysautonomia. It sounds like the hormone changes going on during arousal, and the orgasm have something to do with drastic changes in your autonomic nervous system (ANS) symptoms. I wonder if you should have your pituitary function checked out. Also, having some hormone blood work done might help give some insight. I know the endocrine system one of the things the ANS runs, along with heart rate, BP, digestion, and temperature control. Sex doesn't set me off nearly as bad as you described, but I do get very wiped out after, and it's not always the "physical exertion" for me either. The orgasm itself can mess up my ANS symptoms, but if I'm not crashing I can rest for about a half hour and I'm usually OK. I also notice I get very bloated afterwards, and I didn't mention this on one of the other threads about this subject. I hope you can find some help with this. This has to be a nightmare, as sex is not a pleasure we want taken away from us-----we have to deal with too many dissappointments as it is. Some of us have lost so much already. Maxine :0)