Maxine

Interesting................... At age 50, I remember symptoms going back to age 22 in Oct. of 1981-----5 months after my son was born. I was diagnosed with MVP in 2002 by Dr. Silverman who is a cardiologist. Symptoms were all heart related---tachycardia, flip flops---panic attacks. From 1990 on symptoms were controlled well on beta blockers. In 2000 I crashed, and everything got worse. Wow how time passes! I've been hypermobile all my life, and family and friends marveled at the different positions my body could get into----yet because my fingers didn't bend back far enough---(too bad he didn't check the joints in my hands which are like rubber), I was told that I couldn't possibly have EDS----oh and I wasn't skinny enough also------hmmmm. Well I'm on wellbutrin, and after the 30 pound weight gain from this, my weight has been steady. If I went off wellbutrin, I wouldn't be able to walk. I pressed on because my shoulder blade dislocated a couple times, and had subluxating all over my body------including my neck. I found a geneticist, and have since had Classical EDS with joint hypermobility, vascular involvement, and spine instability diagnosed. Also confirmed at the NIH EDS study which is still ongoing. Because of the EDS I have a vertebral artery hung up somewhere between my head and neck due to hypermobility of c1-2 joints. The blood flow is cut off, and the right vertebral artery is enlarged because of this (making up for the one on the left which is missing in my brain MRAs)-----and this was noticed as far back as 2002 before my cervical spine surgery. What do you think would have happened if I listened to the Doc who misdiagnosed me? Pursue second opinions if you feel you have hypermobility, as the consequences could end up worse then mine were. See a geneticist who specializes in EDS/JHS to get the correct dianosis. I'd like to see some studies on spine instability as a result of EDS, as upper spine compression can also result in ANS dysfunction---(In a big way! ) Especially with brain stem syndrome. Maxine :0)

Reen, I did report her,but I ended up being micro managed from that office until some staff changes were made. That's what I get for standing up for myself. I reported her the same day, but coudln't rememeber her name. I was so upset because of that, but they said they would know who it was based on the time and date I spoke to her. They have a way of figuring it out. Now I know who is was, but they are still employed. The so called apology letter from the head nurse was so cold and sarcastic it was just plain ignorant. My therapist was helpful, but I switched to my other therapist that I went to when I first crashed with POTS. They are both GREAT, but my insurance covered her better. Both therapists have gotten me through some rough times, and both validated my illness was real. Reen, it's so much worse then I imagined-----the struggles I ended up with due to this incident. I thought it would be easier to get over, especially when someone else stepped up with a simular complaint. I still strugle with Trust issues, and I think it's obvious in some of my postings today. I couldn't live with myself doing something like that----especially to someone who is sick and vulnerable. I remember being on that hospital campus one day because I was hosting a patient who came to see the ANS doctor there. She was pulling some research from the library and I got disoriented while trying to find where I parked. I was such a mess. It was July, and hot out. I kept going the wrong way, and I don't know why because I had been on the campus 1000 times. When I finally got pointed in the right direction, I slowly walked to my car. My body started to shut down, and I had to walk very slow. A woman was coming from another direction, and I don't know if she was a doctor, but she must have noticed something because she looked at my face, walked by, and then started to turn back towards me, but I lokked at her and gave an, "I'm OK smile". I really wasn't OK, and I felt embarrassed. I think about times like this, and wonder what this nurse must think about------how she ended up like that. That day is like many days I have dealt with, and I've struggled beyond that with other issues----like PAIN. There's days when I'm angry and feel like hunting the troll down and telling her what a piece of work she is, and others when I just feel sorry for people like that who have to entertain themselves with stuff like this-------their lives have to be pretty unhappy to want to suck the life out of people like that. Maxine :0)

I have this all the time when dozing off to sleep. For a long time I figured it was related to the brain stem syndrome/compression my geneticist discussed with me along with the orthopedic surgeon. I'm still not sure, but it does seem logical. But recently we found low cortisol levels, but not that low--------so I'm not sure what the heck to think. I really don't think it has anything to do with cortisol. When I get that "coma" feeling it sometimes jerks me out of my sleep, but I also get a rapid pulsating in the back of my head near the area where my instability is between my neck and head, but feels more in the lower brain. I don't think there's any point in bringing this up to the neurologist, as they don't listen to anything I have to say regarding brain stem issues. He's follwing some brain lesions, but he did order some more blood work. Maybe there's something else they're missing with you mvdula. Stress also triggers this severe weakness to come on----emotional of physical. It's like a switch going off, and this is what prompted to neurologist to do the blood work----I'm not optimistic that any answers will come from the blood work. I'm still wondering why my PCP, or no one at the hospital where I had my thoracic spine MRI told me about the lesions on my liver. I know I had a cyst for years, but this MRI report said several lesions spotted---most likely hepatic cysts. No phone call... My neurologist looked at my thoracic spine MRI, and asked if I had digestive problems. I said I always have. then I aksed him if he was referring to the liver lesions, and he said yes. He asked if any of my docs suggested doing an ultrasound of my liver? With my brother dying of colon cancer that spread to his LIVER just a year ago, and my mother two years before that, I would have thought my PCP would have at least called me about this. IDIOTS! I'm scared, and just want someone to help me. I called the cleveland clinic, and there's a nurse in their GI dept. who is meeting with their top GI doc. I get sudden weakness on and off throughout the day-----again I always figured it was part of the upper spine compression. Heat is also a factor, and I've never been one to handle it well, but after POTS crash it's been much worse. On the way to the Cleveland Clinic Monday the sun was coming through the car window. The air conditioning was on because the car was hot in 70 degress----but the sun felt liked it sucked the life out of me. I thought the sun was supposed to feel like it was GIVING you life. Maybe it's some kind of autonomic storm your having. Maybe get this checked into further. Maxine:0)

Good for you Firewatcher! I've been burned by people who you wouldn't imagine doing such a thing. This thing with stalker nurse was part of a collusion-----and the really sad part is the dingbats involved don't understand the seriousness of what they did. I will continue to speak my mind on this as long as I feel like it. It's like cleansing the garbage out, so I can put to good stuff back in. I don't like seeing people getting kicked when they're already down. There's something seriously wrong with people who do this, and karma WILL get them. Keep strong in protecting YOU------and advocate for those who are too weak and sick to do it for themselves. Maxine :0)

I do not want another CT----so I've been reading about other ways to visualize this vertebral artery. They need to see what happened to it, because it's not in the brain------but it's seen in the neck on the left. The orthopedic surgeon said the artery is likly affected for the instability. I guess the neurologist wants to prove it. Why doesn't he just look at the two MRAs that show it's missing. I had a chest CT in June, a cervical spine and brain CT, a CT of my inner ear area, and now a CT of my neck with over 1000 views. I'm now realizing how crazy this is, and doesn't the neurologist realize how many I have had? They have my records. My memory is getting so bad, and I feel like I'm slipping more and more through the cracks. Oh----and I forgot about the CT I had in 2006 of my abdomen. So this is 5----with 4 of them being done within 6 months of eachother---- Meanwhile, my instability feels so bad it's becoming difficult to breathe sitting up----more vision issues, and walking any distance is very difficult. I also feel a big lump in my neck, but anteriorly, and it feels like it's choking me. This is all insane...........don't know what else to say................. Maxine :0)

Thank you-- Uggggg-----insurance companies, SSDI, stalker nurses.......... I think you can give them a category all their own... still thinking of that one...lol I had a nurse from a trusted doctor's stalk me on this forum who tried to discredit me when I filed for SSDI. She read my postings on here. I have my suspicions on how the whole thing evolved, and I won't get into that here.........but never in my wildest dreams did I ever think THIS doctors office would employ a nurse like this, or the other nimrod that probably put her up to it. She basically tried to call me a malingerer in so many words. It was the worst thing that could have happened in my life at this time, and to this day I have developed major trust issues because of this. This is when I went back to my psychologist---I really needed him. I worked for over 22 years in my life, and I loved working outside of my home. I like the type of work I did! It was a long and difficult decision, and the ironic thing is right when I was finally approved for my SSDI, I was offered a job that I had wanted for a long time at the same hospital this nurse worked at. The position was in financial counseling in medical billing. I was sick about it, but knew that I would have never been able to handle a regular working schedule. It's such a personal thing---filing for SSDI, and I was verbally attacked at one of the most vulnerable times in my life. Thankfully the SSDI was approved, and that I had other supportive doctors in my corner. Why would I want to cut my usual salary to less then half of what I made if I could work? Maxine :0)

It's difficult to comment on this, as forums can be supportive for many, but some people may get lost in the shuffle. I think a therapist is also needed to get us through the very difficult challanges with this illness, and any other illness that ANS dysfunction may be secondary to. Tearose, you have been one of the most supportive people here, and I have always felt your words were sincere. I'm thankful for those who speak from their heart, and THINK FOR THEMSELVES--------not judging people...... Support forums can be a saving grace-----but, depending on who's running them, they can also break a person's spirit. Forums are supposed to be a place where you can find comfort when all else fails you. Your therapist is a compliment to this, or very necessary when a "support" forum fails you. There's some really good people out there who are broken--------broken hearts, brokens bodies, and broken spirits. They need really sincere, hopeful, mature, and kind hearted people to get them through this on going struggle with this illness, abusive doctors, cold hearted family and friends, and trolls who have nothing better to do then increase our misery even more. We also have to rely on our inner strength and street smarts. I think a support forum can also make or break a good attitude. Maxine :0)

The endocrinologist doesn't feel it has anything to do with how I'm feeling either. The cortisol is just 4.08, which isn't that low. I went to my neurologist for my check up at the Cleveland Clinic Monday, not really for my cervical cranial instability issues (CCI), but for some lesions in my brain. I did tell him about the recent 3D CT scan that was recently done. The rediologist LOCALLY read this as "normal", but it's anything but normal. The orthopedic surgeon said it was 7.5 mm off on the left, and 7.9 on the right. I discussed this with the neurologist, and he said I saw two surgeons there that said I don't have instability. Then he switched subject to my "switch being turned off". I told him this is what it felt like lately when I try to do any physical activity. I've been having some really bad days. I forgot to tell him my cortisol levels were low. We had my Son and his wife, two granddaughters, and mother in law over for dinnner. The oven was on in the kitchen after I prepared the vegetable lasagna. I made a meat sauce for the meat lovers also. My husband helped a lot, and did a lot of the chopping of the veges. I had to layer it though, and did this while I sat on a stool. I knew I wasn't in great shape, but kept going. The heat got to me so badly, that I was in awful shape for the rest of the night. Now the warm weather kicked in----we had a few 80 degree days in NW Ohio believe it or not. My heat tolerance is worse then ever now. We discussed this, and how quickly I start shutting down when trying to go out and do anything. I rarely go out by myself unless it's for a short errand. It's not that I'm afraid, it's because once I get out and do whatever it is I'm doing, my body feels so weak, my OI kicks in worse then ever, and I'm afraid I won't make it back home. I have no anxiety when I go out, other then what anyone would get when feeling this way. I told the neurologist that I felt it was connected to my CCI----but he went on to tell my that two NSGs there said I didn't have it. I said it's rotational instability, and it's axial. It's horizontal! I wouldn't push the issue if NIH didn't say it also---but they feel I have full blown CCI. The orthopedic surgeon said the left vertebral artery is affected because it weaves right through c1-2. This is the joint that unstable. The vertebral artery is not seen in my brain on the MRA done at NIH----reporterd as missing. I know you have all heard this beofore--- . However, if this is seen on a recent ultra sound in my neck, but it's still not visualized in my brain, then where did it go in the cervical cranial area? Why are my headaches on the right side getting worse. Why won't the Cleveland Clinic address the instability? If I were a neurosurgeon I would be listening to the evidence, and putting the puzzle pieces together----especially with TWO MRAs showing the left vertebral artery missing in the brain. I was telling the nurse at the CC about this, and she said don't give up, keep trying to get someone to listen. I'm thinking it's like trying to drill for oil in my livingroom............there's nothing there? They don't get it! The neurologist Wants to do a arterial CT scan with contrast. I don't know how I will do with the contrast since I haven't had it since 2002. I don't know how my vessels will handle it with the headaches I'm having. Also, I''ve had about 5 CTs in the past year. Three of them in the last few months. I just had one done over a month ago! Isn't this too much radiation? I'm thinking it is! Meanwhile, my head hurts so bad when I sit up, or take a step. It pounds when I take a step. My husband is ready to blow up at someone! He can't believe this hasn't been investigated further. The neurologist is doing some blood work to see if my weakness is related to something else. There's times when it feels like I can't breathe, like I smothering slowly. My reflexes were really hyper in his office, and he's checking for vitamin E levels?????? I told him I have upper spine compression---(even radiologists have this in my MRI reports.) He's not connected at all with the CCI. Do I need to go to speak with someone at a higher level to get them to understand that the CCI is real, and connected to my EDS because everything is becoming instable? I'm not saying the Cleveland Clinic is a bad place at all, as they saved my brother in law's life. They just don't know a lot about CCI as a result of EDS, and a lot of other larger medical institutions don't either. Maybe the surgeons don't want to deal with it because it requires more investigation, and this isn't the protocol unless there's something obvious radiologically. Maybe it might put their careers at risk. I'm just thinking it's a well known institution, so I guess I'm naive in thinking one of the best clinics around should automatically know about CCI related to EDS. They don't even know much about EDS. My endocrinolgist was really great about it. He thanked me for the EDS medical resource guide. He takes EDS seriously and understands the connection it has to unstable joints, ligaments-------------and even the spine...... So, here we go chasing other causes for my symptoms once again, while the real cause is being missed. Meanwhile I deal with more pain, and more limitations. I'm told the right vertebral artery is enlarged because it's carrying the load from the missing left vertebral artery, and with the poor vascular tone with EDS this can't be a good thing----------just saying......... Maxine :0)

I'm sorry you had to deal with a psyc. evaluation like THIS from SSDI. I thought the whole process was brutal, and I went through both a medical and psyc evaluation. Both were really rough, and on both evaluations there was a lot of inaccurate information---(a nice way of saying they lied). I got copies of my reports, and I wrote the local congresswoman, and the governor of our state pointing out the false information, and stating I did not want this in my file, and that this will affect my chances of being approved for SSDI. It was a long difficult decision to make, as I loved working and being part of the community, and I didn't need people from SSDI treating me like I was some kind of malingerer. Will your family advocate for you? I don't think this psyc evaluation was ethical, and the way he talked down to you is appalling. Lisa, I sense you are a good person, and take pride in that--------don't feel guilt over something you cannot control (easier said then done, I know). Don't let this obtuse little man belittle you. You can get a copy of any SSDI evaluation, medical or psychological. If you're feeling too overwhelmed to advocate for yourself, find someone who will help get you through this. You need support, and a good strong shoulder to lean on. In the end I was approved after almost 3 years. I was fortunate that I had a medical expert that was actually impartial, and he was great! He researched the EDS, and the favorable decision was based on that. The information on the POTS was too vague to base my disability on that. The psyc evaluation tried to say I had somatization disorder despite evidence in my medical of psysiological cause to my symptoms. My attorney said it this diagnosis would be helpful to my case also, but both of us didn't feel right, as this was a flase diagnosis. http://en.wikipedia.org/wiki/Somatization The diagnosis was removed, and my SSDI case was approved based on my physical condition. When the psychologist tried to speak at the hearing, the judge informed her that the hearing was over. I felt validated, but at the same time I was a little stunned at how serious the medical expert said my medical condition was. It's difficult trying to prove how sick you are while at the same time being in denial on how serious it really is. I don't know if this makes sense, but it's a tug of war going on inside my head of trying to accept how sick I am while trying to prove it at the same time to SSDI. This is the worst possible time to have an inept psychologist/psychiatrist to belittle a patient who already feels fragile. I'm on your side, and anytime you need to chat I'm here. Just PM me for my e-mail address. Big HUG to you. Maxine :0)

Makes me much, much, much, worse! I miss margarita's. I also love imported beer and miss that a lot. Rolling Rock is pretty good. Maxine :0)

Thanks Anna and Julie. You're both so nice, and I really appreciate your support and understanding. You're not alarming me Julie. I'm sure the GI doc there will do the best thing for me. Some people I have talked with have had no pain at all with no sedation at all. My brother had pain with the sedation! Everyone is different, and I won't know how it is for me until I go. My Dad's bowel is torqued, and they couldn't get up there at all. My therapist told me she had no sedation, and they were abel to get it done with very little discomfort. My younger brother Mike said he was sedated, but remembered it and when they removed a polyp. We don't have it scheduled yet, as the GI doc is going to look at my previous films, and we will go over my history then schedule the appt. The nurse said they have handled every difficult case possible, and i would be in good hands. They specialize is this type of testing-----even on the most difficult cases. Anna, the camera pill thing hasn't been brought up, but it could probably get a better look of the big diverticulum in duodeum. Julie, I'm thinking he'll want to do an endoscopy also, so I don't think I want that done without sedation. I've had an endoscope done in 2001 when I first crashed. I'll never forget it. The scope wasn't bad at all. It was the reaction to the versed-----and later the anti-nausea drug they gave me when I went to the ER for the reaction to the versed. It was a delayed reaction, and at the time I didn't know I had POTs yet. I thought I was going crazy on the anti-nausea medication. Both drugs had lasting effects, and I ended up bed ridden. This is why I'm so afraid of sedation drugs. Versed definately won't be used. Thanks again! Maxine :0)

I have good news...........No mutation was found in MLH1, MSH2, MSH6 sequencing for lynch syndrome. http://dinet.ipbhost.com/index.php?showtop...=lynch+syndrome http://www.hpcgg.org/LMM/comment/print/200..._Info_Sheet.pdf My brother's oncologist said this doesn't mean we don't have to be screened early. The best screening method is colonoscopy. I asked him about my double contrast with air barium enema that I had done 2 1/2 years ago, and he said it's not included in the usual screening, and it's something for gastro docs to fall back on if a colonoscopy can't be done. i.e.---->My Dad's bowel is torqued, and therefore they could not get the scope into his colon. He had the barium enema done the same day, as his prep was done. It needs to be done more often----every two to three years, and it can't detect small polyps, or do biopsies. My local gastro doc, my PCP, and the General surgeon have had differing opinions on weather or not I should have a colonoscopy with sedation. Gastr doc won't do it--(he's the one that did the lower GI), PCP said I wasn't stable enough---period. the surgeon set it up twice for me. The first time my mother died the day before it was scheduled. I actually called the Friday she was diagnosed with the terminal cancer------this was Friday Feb' 23rd.-------she died Feb 25th on Sunday. I was in no shape for a prep then. The second time it was cancelled was when she got the surgical room all set up for me with an anesthesiologist. I got a sore throat, and this was following strep throat the month previous to that. We couldn't take a chance, so it was cancelled. When I went to my PCP following this to see what to do next, he did his usual routine of taking OI blood pressures, and saw mine drop very quickly that day. Usually there's a bit more of a delay (Maybe a minute), but on that day it dropped very fast, and I do have days like that also. Anyway, the PCP said I wasn't stable enough for a colonoscopy----and this is when a virtual colonoscopy was scheduled. He said I couldn't handle the double prep they wanted to do for this type of CT colonoscopy. He was going to do the prep in the hospital, but the hospital didn't have virtual colonoscopy. somehow he thought he could make it happen anyway. I knew he couldn't. I called the general surgeon's office to see what we do next. She said we'll try a new fecal test that can detect polyps. They never called, and after almost two months I called. They dropped the ball, and said all this should be handeled by my GI doc. Thanks for telling me two months later! I decided to call the Cleveland Clinic's GI Dept. A very nice nurse called back. I gave her full history, and I told her I was worried they would not want to deal with my situation. She said they know exactly what to do, as the GI doc there has dealt with many POTs patients. I asked about the EDS, and she said she didn't know much about it, but the doctor most likely does. She said he was very nice---(great bedside manner), and that he will know exactly how to handle my situation. She wanted me to sign a release form to release my upper and lower GI films, and sent it by microsoft word attachment. I told her I could fax it back to her to expidite the process. I told her I was particularly concerned about sedation because of my cervical cranial instability (CCI). The time is was scheduled locally in the operating room, propofol/diprivan was the drug being used for sedation. (I'm kind of glad I got the sore throat, as I'm not sure what could have happened). Locally the docs have no clue what to do in my situation. If the propofol would have stopped my breathing, intubation would have been dangerous with my CCI. Now that I have recently found out the actual measurement of the CCI, I knew I DID NOT want this done locally. The nurse told me that this gastroenterologist has done so many colonoscopies without sedation, and most people had no problems with it. This is the route I will be going. Even if sedation has to be done during the procedure, I would be in better hands there then here. I voiced my concerns about a couple of NSgs there not believing I had the CCI. I told her NIH, two geneticists, and an orthopedic surgeon said I have it. She said I would be treated as a person with CCI, and they would not put me at risk. I faxed back the release form on last Friday----and by next week, she should be able to set my appointment. To those of you who have believed and supported me , I want to thank you very much. It's part of what gets me though this nightmare. I know I have to take the colon cancer screening very seriously. I will also ask about the lesions on my liver that the local radiologist believes are hepatic cysts. I know those are a benign thing, but I want to make sure. Especially with my family history. With my POTS symptoms getting worse in the last few months, I don't want to slip back even further. I'm hoping the Cleveland Clinic can prevent this throughout this journey. Maxine :0)

"Although the clinical manifestations are unclear, vitamin C is a cofactor in the metabolism of tyrosine and cholesterol and the synthesis of carnitine, norepinephrine, peptide hormones, corticosteroids, and aldosterone." I thought this was very interesting. Thanks for posting the atrticle Sue1234. Maxine :0)

I don't understand why more testing on this hasn't been done on me. I think I recall one of my doctors testing my urine again for this, as the -0- levels was found in blood work that was done at Case Western University in Cleveland by Dr. Chelimsky. http://casemed.case.edu/dept/neurology/Chelimsky.html I think the urine testing was normal. I don't understand how it could be -0- in Blood, but normal urine testing. It has never been investigated further-----even after several requests. I think it must affect my connective tissue. I definately have rapidly progressive instability in my joints, ligamants, and tendons. My diet is full of vitamin C---------------tons of it! However I'm extremely low in vitamin D, and can't take the suppliments due to bad side affects----basically makes POTs and OI worse, and giving my flu like symptoms. I have no idea why, and have tried several times, and will try again. Maxine :0)

I had blood work done a few years ago, and my hydroxyproline was -0-! Here's a link: http://www.springboard4health.com/notebook...oxyproline.html I still have not had a doct look further into this. Maxine :0)

Erika, They really need to investigate this further, AND look outside the box. You need more opinions on the MRIs----or have another one done. They can do a CINE MRI that specifically measures your cerebral spinal fluid. I understand the lack of compassion part------------Please hang in there. Your PCP doesn't have a clue, and if he/she continues to think this way, I would move on the find a better one. Sending you a BIG HUG, Maxine :0)

Prayers, prayers, and more prayers for you Rene. Wishing you the very BEST medical care with compassionate doctors and nurses. HUGS, Maxine :0)

HI TML----and welcome! I hope you can find the support you need here. If you look at my signature line I have a lot of spine issues. I know upper spine compression can cause POTs symptoms, or autnomic nervous system dysfunction. If the problem is up high enough in your spine it can affect the brain stem. If you have a CSF leak it can cause POTs secondarily. Your cardiologist seems pretty knowledgable, as many doctors won't even think spine injury/compression and a connection with autonomic system dysfunction is even a possibility. This makes absolutely no sense if you google this, as even WE can find the connection. It looks like your cardiologist will be a good start, and hopefully he can open other doors to further investigate possible CSF and dysuatonomia connection. On Sunday I had a really bad day, and woke up with my spine feeling like it was hit with a ball bat. It made my POTs worse then usual that day, and I made a quick sudden move to get something, and my heart felt like it fell into my lower gut---I felt a big THUD. I was shot for the rest of the day. Most days I'm a mess, but Sunday was really bad. Be careful, and take extra special care not to overdo anything. Pace yourself very slowly. I hope you find more answers. You have my full support! Maxine :0)

Thank you ALL so much for your kind and thoughtful replies. I really appreciate your support! The scary part right now is getting past the cancer screening. Fortunately I have had contact with the Cleveland Clinic, and a very nice nurse called me and said the GI doctor there has worked with many POTs patients, and he will do the colonoscopy with little or no sedation. (That's all I've been asking for from local docs-----and my PCP got so scared he told me I can't have it done at all.) He suggested I do a virtual colonoscopy, but the prep was DOUBLE! I never heard back from him, as he was supposed to do the prep in the hospital. Sedation is very risky in the condition I'm in now. I went back to the surgeon who was going to do the first colonoscopy, and she said she would do a new kind of fecal testing that detected polyps. I called after a couple months passed by without hearing from her, and they told me my GI doc has all the information, and I should see him. I was thinking why didn't they tell me this 2 months ago? The GI doc did a lower barium GI 2 years ago because he refuses to do a colonoscopy due to the POTS and EDS. The vertebral artery on the left has been affected by the instability, and that's why it's not showing up on brain MRAs---the blood supply is cut, which is taken up by the right vertebral artery causing that to be enlarged. This isn't good with the EDS, and along with the compression on the brain stem, this is the reason I can't handle sedation drugs right now----not to mention the risks with POTS. (The POTS is actually secondary to the EDS and upper spine and brain stem compression). It's really hard trying to live life this way. Your support means a lot to me. My husband has been supportive, and he work many hours----sometimes 65 a week at the post office as a city carrier. He's worn out every day after work. He did get his bachelors degree while working for the PO, but stayed with the PO for the benefits, and knew an entry level position in accounting would be about half the salary he gets now. He made the decision to stay in school to have something to fall back on. With the post office losing mail volume because many people do bill paying on line now-----he's thinking about going for his master's degree. Maybe get into government accounting, but he really wants to do financial counseling. I've worked as a commercial collections specialist for a long time, and I was also an office manager. I was in school hoping to work on getting my degree, but all this took over, and now i just struggle to do daily necessities like bathing, and taking care of our home. I feel bad for my husband who had to take over many of the chores around the house that I used to do. I hope to get back to work some day part time, but the doctor at my SSDI hearing said my prognosis is poor as far as that goes. He said my disorder is progressive. I spent all these years trying to get validated, but in that moment when the SSDI doctor appointed for the hearing said this, I wanted to be in denial that it was really THAT bad. The doctor deemed me unable to work based mostly on EDS......but the POTS symptoms are what keeps me from being functional. It's the blood pooling, because the vascular tone is so poor from the EDS------this scares me, because I don't know how much more pressure the right vertebral artery can take becuase the left one is screwed up. I feel like a ticking time bomb. Shimoda, thanks for saying this is REAL---it is! I feel like posting my medical records on here because I'm sure some people on here doubt all this could be going on----or maybe I'm trying to get attention. Before all this happend I used to hide in the corner when my only symptom was tachycardia. I continued to work ten years with this symptom as beta blockers controlled it, and I felt fairly normal. Shimoda, please avoid chiropractors when dealing with your neck. It's not that they can't help, but for possible cervical/cranial instability (CCI) or other neck instability it can make things much worse. It's dangerous to have this area manipulated. I know it's a very daunting task trying to get doctors to believe you have something wrong in this area, but if you think about it, who would think of something like this to try to get attention? Isn't there a whole bunch of other illnesses we could fake much better then CCI. I think I know when my head is subluxating off my neck----------It's terrible when I can't sleep on my side because of this, but my apnea is worse if I sleep on my back. This is just a nightmare! If I was going to fake something, it wouldn't be this! Keep trying to get your spine issues taken seriously. I know how hard this is------I'm still dealing with it----even with proof from NIH, and an other doctors----just NOT neurosurgeons. THANKS AGAIN for your understandinf and support anna, shimoda, lieze, and thankful! Maxine :0)

It's their "standard technigue" that will end up getting them in trouble. Don't they understand how serious this is? If it's obvious to us-----coooommmmmeeee onnnnnnn! I'm mad for people with this. I hope your neurologist will look outside the box, and continue to help you. Some try sometimes, but then back down because of certain "standards". When I went to the orthopedic surgeon last week the trip was a stress on my spine. Two days after I leaned forward on my bathroom sink putting weight on my arms, thus radiating up my shoulders and neck. I got such a horrible pain and sensation, I thought I might collapse. I was going to go to ER, but wat's the point. It's like fighting a losing war. Maxine :0)

I just read my post----sorry, didn't mean to make this sound like it's about me---it's not. There's a lot of us out there, and I'd like to see the medical profession to become a LOT LESS IGNORANT ABOUT THIS! I don't mean to grill on, and list my issues and symptoms time after time---------------it's just that I can't believe people have to deal with these kind of health issues when it seems so obvious something is wrong. I sincerely hope your neurologist continues to work with you. She sounds like she's got some good sense in that she was worried about seeing you that way, and now ordering a compression MRI. By the way, what it a "compression" MRI. I know what a regular one is, and an MRA----I've had several of those. Please keep us posted on what you find out. I'm sorry about your old boyfriend, but when one door closes, and new one opens with great opportunities. It's his loss. Take care. BIG HUG, Maxine :0)

Did you get checked out for celiac disease? This can cause a lot of gas. When I first crashed with POTs I couldn't pass gas--(I know TMI)-----but we do have to deal with the business at hand----- . When I go to the Cleveland Clinic, I'm sure they'll check me for this also, as you can see on my signature line I do have some intestinal issues. Bloat is my middle name. I have severe bloat yesterday, and looked 8 months pregnant. Today the bloat is much better. It would be nice if this misery could be removed from our symptoms. Maxine :0)

Brittney probably did feel pretty horrible trying to keep the hollywood pace, and it's really very sad that she probably couldn't breathe a word of this to anyone, as her career would end. Hollywood production companies probably wouldn't insure her. I can only imagine the amount of drugs she had to take to keep going-------------but it's possible she couldn't take much of anything due to our sensitivities. I'm thinking she had to take something to keep going. It's impossible for me to be off my wellbutrin and beta blockers. I need the Klonopin to keep the shakes away when my body gets overstimulated. Speak of "over stimulation"----------------can you imagine the public Hollywood life----what it would do to us? ----costo sets me off! I feel so badly for her family, and it's so sad she passed away at such a young age. Her brother is a good guy for getting this out there. This is a good way to honor his sister's spirit. Maxine :0)

I hope you can find some interested people. I live in Ohio, so it looks like I'm out-----lol. Good luck with everything---- . I'm glad you have supportive doctors in your corner. Take Care! Maxine :0)

WOW----------I know I'm late with this, but I have to say he described it pretty well, and it blew me away. What else can I say...... Although I have POTs secondary to my EDS and spine instability, in the end it's the POTs that stops me in my tracks from being functional. The pain can be devastating from my upper spine instability, and the EDS, but when my blood won't stay in my upper half, my heart starts goiing crazy, and I have weakness beyond belief, that's what ends up putting me down. My blood vessels won't hold the blood in my upper body, and my brain stem is slowly being damaged from the CCI, and this is affecting my autonomic nervous system-----probably my CNS as well. Brittney probably couldn't keep the pace hollywood wants. I can't even imagine when a lot of us can't work at all, let along take a short trip to the store. Maybe she had it milder for a while, then she crashed. I had it milder for years and muddled though fairly well on beta blockers. Then gravity took it's toll apparently, and the EDS reared it's ugly head. Maxine :0)