Maxine

Sorry you had to deal such ignorance. POTTS -----Tuberculous Spondylitis http://emedicine.medscape.com/article/226141-overview I still can't figure out how docs can mix that up...... come on, learn the difference... Maxine :0)

Thanks--- I just grabbed a few links related to my question.... http://jnnp.bmj.com/content/80/3/339.abstract/reply http://dinet.ipbhost.com/index.php?showtopic=11949 http://jap.physiology.org/cgi/content/full/102/3/896 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Maxine :0)

I definately know stress makes our symptoms worse. However, how many of us have gone to the ER with a pounding heart, tremors, gagging, dizzyness ect., then told you must be anxious? You get this look like, why don't you just relax? I'd like to see some of them get one of these, they would crawl into a fetal position and suck their thumb and cry for their mommies. Actual anxiety feels so much easier, and it's never made my heart race like it does when my sympathetic NS goes wild. Our ANS doesn't work right, and the sympathetic nervous system gets overstimulated--------------even a brightly lit room, loud TV, or just pushing myself too far in a short amount of time will make me crash. Adrenaline is running rampant everywhere....... I often wonder if this is how some of us end up with adrenal fatigue. I also know the I have a train wreck at the top of my spine causing all kinds of neural and spine compression....recent MRI states narrow subarachnoid space, and also every disk from c2 to T-3 is herniated/bulging with nerve root impingement and spinal cord compression. Pannus growth on the odontoid process is also listed, and said a possible factor on the narrow subarachnoid space. This can also affect the sympathetic nervous system......most definately, as the ANS originates from this area. The instability at the cervical cranial region has caused the pannus growth. The neurosurgeon I saw in Bethesda MD. said I have an angulation problem in this area. I know many of you have been misunderstood my Doctors, friends, family, ect. that your suffering from stress induced anxiety------rather then a very disabling illness that messes with our body relentlessly. Where IS that study of POTS patients verses normal subjects on anxiety? I'll have to look for it in my long list of saved articles. Maxine :0)

LOL.... I was a teenager in the 70s-----I did smoke the POT............. lol I felt a lot better with that kind of POT...lol. However, I never could smoke much----just a tad... Maxine :0)

Thank you for the information and support! They are miserable, and it does make me feel like I'm going to pass out some times. WOW----they can go on for years? I can't imagine that! My gyno blows the whole thing off. Maybe when she gets them she'll understand. Time to change gynos. I don't have time for more misery on top of the misery I have. Thanks again Ladies.................

THANKS Jan! LOL-----I like the grandma story. My mother barely had them. I have blood pooling with POTS----so when the hotflashes happen it feels like my blood pools more quickly, as if it doesn't alrady--- . The problem is that I don't sweat much, but get very hot----it's terrible! My arm pits get sweaty when they didn't before. I had to get a different antiperspirant-deodorant. Maxine :0)

Help! I've had these before----the hot flashes, and I kind of bragged on how mild they were. NOT NOW! I had them before, after my period stopped for a while, then my period started back up. Now the period has stopped for about a year and now really bad hot flashes. how long does this go on. My gynochologist blew me off when I talked about checking my hormone levels. My endocrinologist checked them but blew me off as well, saying these levels weren't bad. He said I still had some estrogen, but most likely because I had gained weight, not a lot----I don't appear heavy. I don't get it. I get so hot it makes me feel like I'm going to collapse. With 90 + temperatures this isn't fun. I'm a prisoner in my house! Any advice on what to do would sure be appreciated.... Maxine :0)

Yes. I have experienced this----just this past Friday. Do you notice your mouth getting very dry when you have an episode? It was awful----I was gagging, burping, tremors, tachycardia and nausea. I rarely get nausea, but this time I couldn't get rid of it. I'm also ahving a rough time with my neck instability issues. Maxine :0)

Nope----it was me.... http://dinet.ipbhost.com/index.php?showtop...=catecholamines Maxine :0)

Remember------although chips may taste salty, they are only 180mgs on average. Pretzels are much better----average sodium level is 450mgs, and fat content is much lower (most brands have -0- onctent of fat). Have a v-8 with them, and you have a great boost in sodium. I love my chips---LOVE THEM....BUT they are so light, and have lots of empty calories. Maxine 0)

Thanks---I appreciate your support. Dianne--------I imagine this is what happened to me Saturday. I must have been having the same thing going on, but I wasn't very connected to what my body was telling me. I have been laying really low, and struggle just around the house. When I get this my heart usually warns me, and Saturday it did. i assume it must have been low then too.... I have no idea. I should have another tilt table done. However, I heard tilt table testing for EDS isn't advisable. I don't think we compensate like we should. I've had a couple of really bad grey outs when my heart flopped around in my chest----then rebooted...or that is what is felt like. I don't trust anyone in this town to help me during a tilt table test. Not to mention I don't seem to have any juice left in me with the low catecholamines----so how would I fight a bad grey out this time? Thanks again! Maxine :0)

HI-----I feel like a train wreck! BP standing fell to 83/74-----pulse pressure is only 9! Saturday I decided to take my BP sitting and standing. BPs sitting average 109/78. Sitting, my diastolic is usually around 80. This has been since I've had increasing pain in lower cranium. I do have an appointment to see Dr. Grubb. I was at the hospital with my brother in law Thursday while he was having his chemo done for non-hodgekins lymphoma. I decided to hang out, rater then try to go in and out of the hospital in the heat. Temps have been running in the lower 90s here. I saw Dr. Grubb walk through the main floor while I was on the phone talking to my sister in law. I thought I should go to his office and try to get in to see him. They happend to have an opening in August, so I grabbed it. I'm due for my yearly check up anyway, so I sually check in about this time. It's been TERRIBLE! I am having HOT FLASHES on top of this! They are horrible. When I had them before they seemed milder. My gyno doesn't care.....she just didn't care, nor did my endo. I had really low catecholamines also, and the endo was dismissive. I got my dictation notes back from the surgeon, and they were confusing. I have instability at the cervical cranial junction (CCI), and I basically he is saying I have an angulation problem---AKA---instability. He is very knowledgeable about CCI, and a lot of other spine and brain tumor issues. His Bio is long and impressive. I know the sitting MRI said there's a mass/pannus growth on odontoid bone (which no oter MRI ever reported before---even though two NSGs told me I had this in addition to the Doc from NIH study. Other problems of disk herniations/and nerve root compresssion in this area also. The vertebral artery is not visiable in the brain which could be from the pressure from the pannus growth. My heart has been doing flips flops more, and on Saturday I had kind of a big episode. When I took my BPs stading that night, the BP fell to 83/65----pulse fell to 53! WHAT!? My BP was all over the place standing, but it never got high. It stayed below 100/something, but dipped on and off. My feet are purple, and hands swell and gorge with blood worse then they ever have. I'm at a loss on why I have taken a sudden change in dysautonomia symptoms. I know Dr. Grubb said menopause can do this, but MAN----how bad?! I have also been worse since the flexation/extension CT done in Maryland. I'm am so limited! I dare not go out in the heat at ALL! Hopefully Dr. Grubb can help until I get more answers from the surgeon. I know the surgeon has made another dictation, and is still acessing my case. He's also testing my for tethered cord, and wants me to do a urodynamics test. I think he's on the fence about tethered cord, but it looks like he's investigating the CCI further. This vertebral artery missing on the left side of my brain has to have something to do with the pannus growth. Why would it show in my neck, but not in my BRAIN MRAs. This has been on TWO MRAs! NIH confirmed it, and even a local neurologist. Thanks for reading! I still feel like I'm smelling smoke, and I can't go to the bathroom-----(bowels are very slow)---worse then before. Maxine :0)

LOL----well that's what I get for starting a post----then walking away from the computer for a while. Still----check out IKEA....

Check out IKEA..... http://www.ikea.com/ Maxine :0)

Please pray that I get through some tough times with the upper spine compression---and the cervical cranial instability. This is such an unknown territory in the medical field, and it's related to EDS. I'm struggling very much with this, and pain levels have been very high. I'm trying to help my brother in law who has non-hodgekins lymphoma with his medical care, and coordinating his transportation. My mother in law has been recovering from a fractured sacrum. Thanks to her two lovely twin daughters advocating for her for the last 4 months, she looks like she rocovering well outside of still having to straight cath herself. But now it's just morning and evening before bed. We believe this is resolve itself completely. The whole family have helped, but they have been there the most for her. I helped as much as I could----mostly babysitting the inept medical staff at the hospital. The nurses seemd to be OK. The nursing home where she went for rehab was a train wreck. The trip to maryland to the EDs conference, and to see the neurosurgeon before the conference took a lot out of me. I still feel like i'm breathing in cigarette smoke. So weird. I'm looking forward to the surgeons dictation notes, and when he'll see me again to get a plan together to help me. Say a prayer for my brother in law. His non-hodgekin's lymphoma came back after 17 years of remission. This time it's in the bone marrow. Take Care.................................. Maxine :0)

A number of things are going on, and I'm wondering if this can be causing further problems. I can't handle the heat this summer, I'm having hot flashes/manopause symptoms, major issue with my cervical cranial instability, amd worn out completely from the trip to Maryland. I feel like I'm breathing smoke-------smelling it, tasting a dirty ashtray-------------this is crazy. I'm trying to remember when this started. It seemed to happen during the trip to Baltimore. IT seemed worse after the fexation extension CT scan. When I got hom, my BP and pulse seemed OK, but sometimes my diastolic BPs have been higher then usual, and systolic are low normal to low. Pulse pressures have been pretty narrow. I can't understand this feeling of breathing smoke. My thoracic spine pain has been bad too. I feel like you know what. i'm more panicky---jittery. My spine feels like it's buzzing a lot, and I have that vibrating sensation from my mid spine all the way up to the back of my head. My guts are slow also............ I'm afraid to go to any doc about any of this. It just causes more stress. I called Dr. Grubb's office, and I never heard back after leaving a detailed message. Maxine :0)

LOL----We've been in NJ traffic on the way to Long Island. It was like being in a video game gone horribly wrong-----meaning were were in it! 80-90mph bumper to bumper. I remember coming home one day over 10 years ago after a couple margaritas, and my son and his friend were playing one of those video games with cars driving in it. I tried it just for fun, and crashed into everything----I tried it with no drinks in me----I crashed into everything...lol. I felt like this in NJ, like we were going to lose control. The yield thing was the same in MD. It's not POTS friendly for sure! Maxine :0)

Babette! It was so nice meeting you too! Isn't it crazy how much we become affected by traveling? Shouldn't we be able to enjoy traveling like anyone else? I'm sorry you ended up in the ER with an IV. I hope the IV was helpful in making you feel better. I think I met a couple people from DINET, or maybe it was people who had POTS. It was so overwhelming meeting so many people, it's difficult to remember everyone. The hotel was pretty amazing! Take care of yourself--------

Thanks Mary P., I appreciate your support and understanding. I'm still paying for it, but getting by. I've been trying to catch up on sleep, as I didn't sleep well at the hotel, but better then I thought I would. We're just waiting to hear back from the neurosurgeon's office. I should call Dr. Grubb's office due to having worsening of POTs symptoms. I have a feeling the trip was a bit overstimulating for me, so hopefully things will calm a bit in that dept. I still don't understand why I feel like I'm smelling smoke----it feels like I'm smothering sometimes. I try to keep calm....but it's hard when this happens. My lungs are clear----it's so strange. I will certainly keep you posted on what the doc has to say. I'm definately having a rough time since the CT was taken, and feel dizzy and out of it. Maxine :0) My pictures are in facebook.

We have pictures.... We had a good time-----even with having to drive to Bethesda twice. We stayed up late every night talking with people we met. It was pretty amazing! If anyone is interested in seeing photos from the conference, I have pictures in Face Book. You'll have to send me a PM. We should have had someone take a picture of us. I don't like taking pictures----if you see any other pictures of me, I'm usually hiding my neck. MY neck makes me look bigger then I am. I'm not that big-----pretty average, after being VERY thin for years. Wellbutrin can pack on weight... I have pictures of the speakers, the view from our room, the mall inside the hotel, and some of the people we met. Maxine :0)

Hi, Sorry for the delay in responding, and Thank you so much for your support! The conference was fantastic! I'm still trying to take it all in, and remember everything I learned. I'm also trying to remember all the people I met. It's overwhelming in a GOOD way. I'm hoping I don't offend anyone who's name I don't remember. MY husband was great at finding people that I have been in touch with, as I was so wiped out from going to see the neurosurgeon, and that CT scan I did with flexation and extension. The MRI wasn't bad, as I didn't have to extend my head back as far. On Wednesday night I really didn't think I was going to make it. I thought this was it! My head never hurt that bad. I posted a list of the previous speakers on another thread, but here's the link again; http://www.ednf.org/index.php?option=com_c...Itemid=88889183 I learned so much about cervical cranial abnormalities related to EDS, and other spinal deformities of the spine. I was so involved in meeting new people with problems just like mine, or people who have had so many problems that I was stunned on how much ignorance is still out there. With 500 + people showing up to the conference, I find it amazing that so many had the same stories, and the physicians were telling the same stories of dismissal and ignorance by the medical community. I can't wait for the DVD, and handouts of the presentations so I can review the information. It's hard to remember everything presented. There were a lot of people there who had POTS secondary to their EDS. The courage to the people who had vascular EDS was amazing. One woman had 5 stints put in her for dissected arteries! I met people with scooters, canes, seat canes, wheel chairs, and walkers. I saw people with ring splints. I even tried a ring splint on my middle finger myself. It didn't seem comfortable so I returned it. However, when we were packing to leave, I twisted my index finger, and now I know the purpose to the ring splints. I do this all the time, and it just became part of "my normal". I will be looking back into the ring splints again..... http://www.silverringsplint.com/ There were venders there selling the ring splints, and various other things----even "klogs" http://www.klogs.com/whyKlogs.cfm#leather I bought a pair, and love them! I bought Dr. Tinkle's book ----------- http://www.amazon.com/Hypermobility-Handbo...X/ref=pd_cp_b_2 http://www.amazon.com/Issues-Management-Jo...e/dp/0981836003 I wasn't surprised to find that many people thought thier POTS to be more disabling then the EDS. I'm not saying the EDS isn't disabling, but the secondary problems to EDS can be extensive. Dealing with relentless blood pooling due to stretchey veins is difficult to treat, even with vasoconstrictors, so many of us just have to do the best we can, as the drugs don't always have the full desired effect. To be truthful, I'm having trouble remembering the vascular, pain, and digestive problem presentations----as I said, I'll be wating for the conference DVD, and any handouts offered. The conference fee was $500.00 for my husband and I, and we stayed five nights in the hotel. We signed up early, so the registration fee went up later. Thank God my husband was finding people I had been in contact with----I was just so out of it.... Regarding the surgeon......... I saw him after both tests were done---the CT, and the sitting MRI. As he said on the second visit after the CT was taken----my brain stem had issues.... I'm not sure what, and this is why he wanted an MRI done. I saw him on Saturday at the conference, but we only talked briefly, as he had to leave to do a brain surgery. He said I had an angulation problem near the brain stem, and that he needed me to see him again (we only had a few moments alone). He needed more time to review the films, to see what else might be going on. We discussed the vertebral artery missing on the left on the first appt. He said it can be a normal varient. I told him there's blood flow showing in the left vertebral artery in my neck by ultrasound. However, MRAs show no vertebral artery visable, so I aksed if this could be affected by the instability? I think this is another reason he would like to evaluate the films further. He is very professional, and I liked him very much. He didn't like the quality of the films I brought with me. Basically, IN MY OPINION, where I live is considerably behind in the latest medical technology and research. They are totally lost on EDS around here, and have no clue on how serious it is. I joined Facebook and made many friends from the EDS group. I wasn't the FB kind of person, as I'm more into using my computer for support and research. However, this has changed, and now I'm addicted!----lol. (I get a lot of support on facebook--- ) My husband likes the games on FB, but so far I haven't played any of them. No farmville for me----lol. The neurosurgeon will send me his dictation report on what he has so far, and we will set up another appointment. Right now I'm catching up on rest, and trying to get my guts back on track. My nerves are a bit shot also, and I'm trying to get those in a better place also. Ahhhh, what it would be like to feel normal..... What is that? Maxine :0)

See you there! Today we went back to the NSG. He said I have issues, but wanted me to do a sitting MRI in town, and some kind of urine dynamics testing. We were able to find a sitting MRI facility half way between Bathesda and Baltimore. It was pretty interesting. I hated going back on the beltway......... It worked out pretty well, as the MRI was right on the way back. I don't know what the NSG is going to do, but he's pretty intense with deep thought. He reminds me of my brother James, who speaks very little, but always has an intense look of deep thought on his face. I liked him. Anyway, heading down to the conference on the 5th floor. They have small mall in here we're going to check out on the same floor--- We have a view of the habor from our room. There's also a skyway you can walk across from the 5th floor. We're on the Ninth floor. Looking forward to meeting you! Maxine :0)

The thing is that I had to have another CT scan. HE said the films I had were not the best quality. He ordered another CT scan. I'm concerned because I've had about 6 in the last two years----the last one being a few months ago. He didn;t seem overly concerned. I think they are much more advanced in Baltimore, as he mentioned a completely different view-----FRANKLY IT MADE SO MUCH SENSE TO ME, BUT OBVIOUSLY THEY DON'T GET IN WHERE I LIVE, OR A FEW OTHER PLACES I WENT TO. The orthopedic surgeon I sae in another city did a 3D CT scan with me turning my head to the left and right. This did show significant instability, but my PCP wanted me to have another opinion------someone familiar with EDS. I feel TERRIBLE right now. I had to do flexation and extention view----and they don't mess around.....they flexed my head way back. I'm just sick.....so dang sick. Riding the beltway from Baltimore to Bethesda isn't fun-----they're crazy drivers! My head and neck are throbbing----even with my tylenol. It's upsetting my stomach. Praying for this to pass ASAP. Maxine :0)

With the oncologist saying you should be fine by now----does this mean you're cancer free? Are you in a full remission? I've been having rough time lately, but reading your story makes me feel fortunate for what I have, as I know many of you live alone, and have to carry yo though this by yourself. Do you have family/friends support------------do you live away from family? Do you have someone to advocate for you whe you are too symptomatic to speak for yourself? I know for some of us, support still isn't there even if family lives around the block. Friends often slip away from us because they don't understand, which can only mean they weren't friends to begin with. I still have some who have weathered the storm with me, and try to understand the best they can. I hope you have people like this in your life. It's tough to stand up to some of the dismissive doctors when your weak and tired. My heart goes out to you............I don't live alone, but I know many people who do, and some of them younger then you. We used to have a local support group. I met some people with POTS who live alone through the years, and sometimes when I'm having a bad spell I think of them, and how rough it must be going through this alone. I wish I had the resources to find a way to make this go away for all of you who struggle with this by yourselves. I heard mestinon has helped many people, and in fact I know a woman locally that it's helped a lot. She is much more functional now. I'm sure having hodgekins lymphoma hasn't helped. You're oncologist needs to understand how difficult it is for your autonomic nervous system to deal with other illnesses, when it's already having trouble functioning correctly. Anything else that goes wrong outside on the POTS/ANS dysfunction usually always makes us feel even worse, and it's very difficult trying to get ourselves back to what "our normal" is. I admire your courage, as I can only imagine how it must be for you. Stay here with us, let us comfort you, and offer OUR support and understanding. HUGS, Maxine :0)

How many CTs is too Many? I had to cancel a couple becuase I think I had about 6 in the last two years, one year they were closer together, but different parts of the body. Maxine :0)