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Broken_Shell

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Everything posted by Broken_Shell

  1. Thank you all for your support... it means more to be than I could say. My bowel symtpoms have also suddenly flared in the past week after being tolerable since September, so I am just feeling worse and worse and more and more discouraged. Your words hugged my heart, and I pray that at least one of us WILL see a better 2010. P.S. Tearose, I believe that physical deformities like sunken chest can contribute to TOS. I haven't noticed a change in my heart symptoms since developing TOS, but I do experience shortness of breath more frequently. ~ Broken_Shell
  2. Hi All, I just wanted to post a quick update since it has been so long since I have visited or posted. I continue to have problems with my arms. They think it is something called "Thoracic Outlet Syndrome," but it has been hard for me to spend much time on the computer at all because of the pain and numbness. Added to everything else, I am feeling pretty devastated and disgusted with my body's seeming continuous mission to take away every last thing I have resembling a life. You are all in my thoughts though, and I wish you a happy holiday with a chance for 2010 to be a better year for all of us. ~ Michelle (Broken_Shell)
  3. Hello everyone, I'm sorry that I have not been posting on the fourm again lately... I am in more of a flare again and experiencing severe pain in my arms that makes it difficult to use the computer. I have no clue where that came from... has anyone ever experienced this? I am starting occupational therapy tomorrow with a hand and arm specialist and hoping that things will improve. I want you to know that you are all in my thoughts and prayers daily, and I hope that everyone is surviving as best as possible. Big hugs, Broken_Shell
  4. Dizzy, Did the Protonix decrease your lower GI symptoms and reduce your bowel movements? Thank you! ~ Broken_Shell
  5. Hi Susan, Welcome back! I am sorry for all of the loss and frustration in your life. I know how hard it is to be unable to care for your family the way that you want to. I hope that it can help you at least a little to know that all of us here understand and really do care about you. I'm looking forward to seeing you posting again. ~ Broken_Shell
  6. Hi Erika, I am not up to a long reply this morning, but I understand and I am SO sorry for both the physical and emotional pain you feel. One of the hardest things for me everyday is that I feel so poorly that I can't care for myself, let alone others. As a person, I am very caring and altruistic, and it makes me feel awful that I can't share this with others. Don't be embarrassed though. You know that you are trying harder than anyone else on the "outside" could even begin to comprehend... and more importantly, (if you are religious) God knows. I know it is just a verse, but try to believe in the promise in the quote at the bottom of my posts. ~ Broken_Shell
  7. It seems like I often get nauseous after I have a BM. I also have episodes of nausea independent of the BM's.
  8. Hi Suzy, I am so sorry for your loss. My grandma passed away two weeks ago also. I appreciate you checking in with us though, and I hope that your positive change in symptoms lasts for a long time. Good luck finishin the kitchen. My thoughts and prayers are with you. Hugs, Shell
  9. Hi Karakal, What you describe does not sound quite like myofascial pain syndrome. How bad is your spasticity? I have problems with myofascial discomfort - the best way I can describe it is a tight pain verses sharp or achy pain. Nobody knows quite what it is... it is just blamed on the dysautonomia. I have had some success treating mine with alternative PT and kinesiotape. Have you tried any muscle relaxants? I wish that I had more to offer. Hugs, Broken_Shell
  10. Hi, Cortisol is released when your body is under stress. Unless you have cushing's, my thought would be that your elevation is the result of your POTS, rather than the cause of it. Cortisol levels are also elevated in individuals with depression or anxiety conditions. Have you had serial cortisol levels checked throughout the day? Is your pm cortisol also elevated? Cortisol levels can also appear falsely elevated when you are taking certain medications, so this is something to consider as well. I is especially common and overlooked in people on some form of birth control or hormone therapy. I have tested negative for Lyme's disease several times. ~ Broken_Shell
  11. Hi NoodleMaster, Welcome to the forum. I am sorry to hear what you are going through. I read through your post, and my answer to your question is a loud, resounding "YES". Unfortunately, many doctors and patients do not understand exactly how dysautonomia manifests... your symptoms sound exactly like dysautonomia. Many of us have symptoms similar to yours. I read your list, and many of your symptoms are exactly the same as mine... the light-headedness and drunk feeling I had for years at the onset of my dysautonomia. I told doctors for years that I felt like I was "floating" and like my head was not getting enough blood, and they looked at me like I was crazy. My symptoms also vary from hour to hour... more like minute to minute most days. You should certainely insist on a tilt table test when you see the new doctor. You may want to browse some of the old posts here to read more about some of your symptoms. Just remember that many POTS symptoms are related to blood flow distribution and inapporopriate autonomic signaling, so although the tilt table testing is helpful for diagnosis, it does not help much with treatment. I was diagnosed 7 years ago, and my symptoms have become more and more severe over time. Welcome again... I hope that you will find a lot of support and guidance here. I look forward to seeing your posts. ~ Broken_Shell
  12. Hi sugartwin, Welcome to the forum. I am so sorry to hear about your suffering and losses. My heart goes out to you... I am 27 years old, and I have a story similar to yours. I had to leave graduate school two years ago, just 9 months short of earning my degree. I had tried so hard, but part of my program required 10 hours of clinical work a day, and I was just too ill to be able to manage. I also had to move back in with my mother, and like you I am scared and miss my independence so much. It is a shame how many doctors assume that dysautonomia is a psychosomatic illness. I went through the same thing before diagnosis. I hope that you are able to find a set of doctors who understand the condition and can treat you. Have you tried the Cleveland Clinic? I know that they have a well-known dysautonomia center there. I also experience "convulsion-type" jerking, often accompanied by abnormal blinking. I don't know of any treatment for this symptoms other than using medications and lifestyle adaptations to try and keep the body in as stable of a state as possible. I hope that you will find a lot of support and guidance on the forum, and I look forward to seeing your posts! ~ Broken_Shell
  13. Hi Dizzy, I am so sorry for your suffering. I wish that I had some suggestions, but I am in a similar boat myself in a bad, bad GI flare (again!), and I don't know what to do. I can relate to the sweating, shaking, flushing, pre-syncopal feeling with eating and GI activity, as well as running to the bathroom nearly everytime you eat. I have been trying Imodium and Zofran and a bland diet (rice, egg whites, bananas, apples). I know that you said your usual meds aren't helping. In the past when things have gotten really bad, I have been hospitalized for a few days to get fluids and rest my GI tract. Would your doctor consider this? Have you tried something like probiotics? It seems like a long shot, but it is next on my list to try. I am so sorry that I can't be of more help, but please know that I am praying for you. Let us know how you are when you feel able to use the computer. ~ Broken_Shell
  14. Hi Aubrey, Welcome to the forum! I all glad that you have found us. I am sorry to know that you are suffering with this condition, but I have that you will find advice and support here. To answer a couple of your questions... I don't ever have periods of recovery, but my symptoms do wax and wane. I have bad days and tolerable days. With me it is really more like parts of days - I live in 5 minute intervals. I have been trying for over a year to find a hormone regimen that I can tolerate and that agrees wtih my body. I am unable to tolerate birth control pills and the Nuva Ring, so I have been trying with lower dose medications, but I have had nearly constant bleeding that goes on for months on these medications. I just started the most recent trial last night after three months of continuous bleeding that was getting worse rather than improving. I am 27 years old. I have multiple episodes of hypoglycemia on a daily basis. They occur for no reason and cannot be controlled with my diet. I am unable to maintain my blood sugar to do any physical activity, including things like taking a shower. I have to go into the shower after I have had a snack so that I will not become hypoglycemic from the activity of showering. I have seen numerous endocrinoligsts and followed with one for years, but no one knows why I am like this, so the doctor has just said that it must be somehow related to the dysautonomia. Again, well aboard! I look forward to seeing your posts. ~ Broken_Shell
  15. Hello, and Welcome to the forum! I am sorry that you are suffering, but I am glad that you have an appointment with a well-respected POTS doctor. I hope that you will find a lot of support and guidance here on the forum. ~ Broken_Shell
  16. Hi Lisette, I am so sorry to hear about the suffering and loss you have been through. Your husband and son must be such a blessing and source of motivation in your life! I am glad that you found us here on the forum. Welcome! I hope that you will find guidance and support. I look forward to seeing your posts. ~ Broken_Shell
  17. Hi Julie, I am 27 years old and I am also homebound except for medical appointments and small errands with my family. One way that I have maintained a feeling of being connected to others is by making friends on-line... it started because I was looking for people in Poland to practice Polish with, and I now have several friends from around the world, some of whom I am helping learn English. It works nice because I can interact with them on-line or write when I am feeling up to it. When I am not feeling well, I prefer to be alone because I don't have to worry about putting on an act for others or making the time they spend with me "worthwhile" by pretending that I am feeling up to having company. I think that someone suggested that you look into using your knitting as a way to volunteer to help others. Perhaps there is a program through a local chidren's hospital or cancer center or such that would be grateful for donations of knit blankets, scarves, or slippers. I also keep myself happy and motivated by using on-line study materials or items from the library to explore interests that I had in the past and never thought I'd get around to learning about. Hang in there honey and let those of us on the forum know how we can help support you. ~ Broken_Shell
  18. Hi Daphne! Welcome to the forum. I am sorry for your suffering, but I hope that you will find support and guidance here on the forum! ~ Broken_Shell
  19. Hi, All of our symtpoms can be worse when we are standing. Most of those other symptoms can be a result of the stress that our bodies experience from being upright. I like to think of it this way... our bodies cannot properly manage any of our autonomic functions, but they can at least try so long as there is no crisis going on. When we stand up, it is such a stress on our systems that it requires that our body send all available resources, so those resources are no longer available to keep other symptoms under control. It's like watching children, maybe you can handle 4 or 5 well behaved toddlers, but the minute one starts throwing a tantrum, all of your energy goes to that child and the other children can start misbehaving too because you can't watch over them as well since all of your attention is drawn to the one that is kicking and screaming. That's just my theory. ~ Broken_Shell
  20. I just put up a post the other day. I am thinking of trying VSL #3 probiotic. My GI doctor recommended it, but I believe that you need a prescription to get it. Here is the website: www.vsl3.com ~ Broken_Shell
  21. Hi Blondie, What do you consider cranial manipulation? I am asking because I have been getting craniosacral therapy for two years, and I think this may or may not be what you are referring to. I just wrote a long note on it to one of the other forum members about my experiences, and I would to happy to forward it to through PM if this is what you are referring to. ~ Broken_Shell
  22. Menarche at 13. Then very close together, but regular periods every 19 days - lasted 6 days with moderate to heavy bleeding. Amenorrhea began after onset of dysautonomia at age 21. Could not tolerate birth control pills, but put on HRT due to diagnosis of osteoporosis at age 22. Cycles resumed at age 26 and have been wrecking havoc on my life and autonomic symptoms ever since. Bleeding is also heavier than before with a lot of clots. Been trying different hormone combos for the past year to try and shut my cycle and hormone fluctuations back off, but no luck yet. Things have kind of gone off the deep end and I have had near continuous bleeding with everything I have been on, and I am now actually experiencing really fast cycles of autonomic and hormonal symptoms and bleeding every 10 days that lasts 7-8 days like a heavy period. Hope that helps. I'm curious to know what article you are referring to. I know that they list "menstrual cycle influence on POTS" as a future research interest at Vanderbuilt. My mom had endometriosis. I have been told that I may have it as well due to the pain and that I experience related to menses. ~ Broken_Shell
  23. Hi All, My GI issues were miraculously quiet for about 5 days and are now back in full force... bowel hypermotility and running in the bathroom, cramping, nausea, etc. My autonomic symptoms and blood sugar drops are going wild, and I just don't know what to do anymore. I am feeling sick and scared. The only other suggestion that my GI doctor has is to try probiotics. He suggested a prescription strength one called VSL #3. Is there anybody out there who has experience with either this or another probiotic? I know that the GI symptoms are autonomic in nature and not due to IBS, but do you think it's safe and worth a try? Thank you all in advance. I am just sitting here in tears because it is so hard to be better for even just a few days and then have to go back. ~ Broken_Shell
  24. I usually feel pretty normal when I wake up... after all I have been laying for 7 hours straight and my brain and body are happiest that way. Sometimes I feel shaky and light-headed on my way to wash up and such, but usually I feel "not too bad" for about the first 10 minutes that I am up and then it hits me... like my body suddenly realized it is upright. There is almost any imaginable symptom - wooziness, light-headed, headache, muscle tightness and spasms, dizziness, heart symptoms, "pre-syncopal-like" waves of feelings I can barely find words describe. Once I eat breakfast or have a BM and get the GI tract moving things continue to go downhill and all craziness breaks loose. Compared to how I feel when I actually wake up in the bed it is like somebody put me through a cycle in a washing machine and then threw me off a cliff. ~ Broken_Shell
  25. I wish someone had a good idea because I would like to hear it too, but I think we are all in the same boat. I put a heat pack on my tummy, but that's all. It does seem to help some. I tried dicyclomine medication years ago and I had such a strong reaction to it that we had to call the ambulance. ~ Broken_Shell
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