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Everything posted by gofl1

  1. Gastroparesis can mean paralysis of the stomach itself or of the entire digestive tract. I have slow stomach emptying but normal lower gi transit time.
  2. Do you have any digestive symptoms? I am trying to get the test for SIBO (small bowel overgrowth) to see if that is contributing to my issues.
  3. That is a great article. Apparently for an unknown reason some people just don't absorb thiamine properly. Could be gut bacteria or a metabolic process within the body.
  4. Hey everyone, I have not been feeling great recently which has led me to once again start researching heavily. I stumbled upon a couple of interesting discussions regarding thiamine (vitamin b1). I am reposting one story I found on a CFS board below. I know there are a few old threads regarding thiamine on this forum but not a lot of discussion about it. It seems that thiamine deficiency can cause all sorts of symptoms in line with dysautonomia, including blood pooling in the legs. I even found a reference stating that thiamine deficiency has been implicated in erythromelalgia (burning feet syndrome) something that I have recently started dealing with. There are a few different forms of thiamine including benfotiamine and allithiamine. I am going to order an allithiamine cream I found because allithiamine has been found to penetrate the cns better than any other form. Has anyone here tried high dose thiamine (300mg per day+) or had thiamine injections? I am excited to at least give it a try. Here is the story I found, note the part about blood pressure and legs turning purple: I have started this story so many times. There are so many things I want to include but an in-depth version of an almost decade-long battle with debilitating exhaustion is boring. I want to tell people the good part of the story, not the many dark moments I had along the way. When I was ill I trawled the Internet and books looking for answers. I read of so many miraculous recoveries. I read stories of people who had tried everything and then finally they found the answer. Everything I had tried had led to someone's amazing recovery. So why couldn't I get well? I first got sick when I was fifteen years old. Onset was sudden in that I can remember the exact date and time but gradual in that it took about eighteen months to develop the whole range of what became a familiar set of symptoms. My illness made me give up soccer, tennis, and my part-time job. For years I struggled through high school and then university. Studying was important because I knew that I would need a way to pay my way through life. I couldn't be on a disability pension forever. During the nine years of being sick I visited several GPs, two specialist physicians, a neurologist, gastroenterologist, naturopath, dietician, and an immunologist. I have had countless blood tests, ECGs, EEGs, glucose-tolerance tests, CT-scans, MRIs, a gastroscopy, abdominal ultrasounds, and a chest x-ray. All of them came back normal. I also had the Bioscreen tests done. At least they showed up that I had severe metabolic disturbances. Unfortunately, eighteen months of their treatment protocol did nothing to help. Treatments I have tried include gamma globulin injections, vitamin, mineral and amino acid supplements, rest, massage, graded exercise, ungraded exercise, rest, anticonvulsants, beta blockers, antibiotics, meditation and more rest. Rest is the only thing that could be relied on to help. The more rest I got the better I felt but every time I tried to increase my activity levels I would fall in a heap. I had good periods when I could attend university part-time on campus and bad periods so bad that I couldn't take a shower. A wheelchair helped me get out and about when I couldn't walk far but I was still sick and no-one was able to help. I was supposed to be in the peak of my life but the most exciting part of my day was when I was able to go and collect the mail. In March 2001 I went to see a new GP. I had moved out of home and was heading downhill fast. I needed a support person who could write certificates to get me extensions for university assignments and special exam conditions. I never expected any more help than that. At my first appointment my new doctor said, "Bronwyn, no-one is tired for no reason, there is a reason you are tired and we are going to find out what it is." I sat there amazed at what I was hearing but was thinking to myself, "good luck." After all, I had tried everything to get better and had failed. Every doctor I had ever been to immediately put up a barrier when Chronic Fatigue Syndrome was mentioned. Why would this doctor be any different? The answer is simple: because she cares about her patients. She kept an open mind and kept asking questions. She trusted me when I told her how I was feeling and she was willing to work as a team. The first thing we concentrated on was helping me to gain weight. I was severely underweight at 41kg when upwards of 51kg was desirable but no test had identified the reason for my lack of weight. A visit to a dietician was unhelpful so I put myself on my own weight gain regime. I started to eat 85 grams of fat per day. I kept a diary to keep track of what I was eating and I slowly started to gain weight at the rate of about 500 grams per week. Unfortunately, the extra couple of kilograms played havoc with my existing blood pressure problems. My blood pressure would drop from 130/80 to 115/60 after standing for only two minutes. My pulse was erratic, and my lower legs would turn purple. My doctor was very worried about this and rang the registrar at the local hospital. He suggested checking my thiamine levels. Tests showed that my thiamine levels were about thirty percent below the low of the reference range. I had a severe deficiency which was very unexpected since I had been taking thiamine supplements (in a B-complex) for years. When someone is deficient in thiamine it is usual for other B-vitamins to also be low. All my other B-vitamins were in the upper section of the normal range, presumably because of the B-complex supplements I was taking. Lack of dietary intake was clearly not the problem. My doctor started me on thiamine injections. A couple of days after my first injection I was hospitalised for three days with a severe viral infection. After being discharged from hospital I started again on the thiamine injections. To my amazement I started to not feel too bad considering how sick I had been with the virus. After six injections (over three weeks) my thiamine levels were still low so my doctor increased the dosage to 100mg every second day. The effect was remarkable. I actually started to feel well for the first time in nine years. Everyone was astounded. After a month of treatment I went on a driving holiday by myself to Fraser Island. I still had to pace myself but I remember ringing my Mum to tell her that I had just hiked two kilometres across sand dunes. Considering twelve months earlier I was using a wheelchair to get around, my news was nothing short of extraordinary. As I increased my activity I had to increase my injections to daily. This was no problem for me. Everyone was extremely happy but we were also cautious. I had had good periods before and they had always ended badly. But this time was different. My other good times had appeared out of the blue with nothing really initiating them. This time there was a reason for my newfound health. Over a twelve-month period I slowly increased my activity levels until I was attending university full-time, playing soccer, and working a part-time job. In July 2002 I got engaged and at the end of 2002, after eight years of university I graduated. I now have a full-time job in my field and my life is normal. A work-up by Westmead metabolic clinic has failed to find a reason for my thiamine deficiency but it is suspected I have a thiamine transporter defect. There are no specialists in Australia in this field so nothing has been confirmed. Whatever the name, it is clear that I have a metabolic error of some sort. The interesting thing about thiamine deficiency is that it causes symptoms identical to those described by many people with CFS. According to the Merck Manual, early thiamine deficiency causes fatigue, irritation, poor memory, sleep disturbances, precordial pain (pain over the heart and lower part of the thorax), anorexia (uncontrolled loss of appetite for food), abdominal discomfort, and constipation. I have heard many people diagnosed with CFS complain of these symptoms. The severe form of thiamine deficiency is called Beri-beri which translates literally as "I can't, I can't". There are two forms of Beri-Beri, wet beri-beri and dry beri-beri. Wet beri-beri causes problems with the cardiovascular system such as tachycardia, vasodilation and eventually heart failure. Dry beri-beri causes peripheral neurological changes such as pins and needles in the lower extremities, muscle cramps in the calves and eventually footdrop and toedrop. I have heard of these problems occuring in people diagnosed with CFS and before we discovered my thiamine deficiency I had already started developing cardiovascular problems. I am not suggesting that everyone diagnosed with CFS actually has a thiamine deficiency and I'm certainly not suggesting that daily thiamine injections are a quick-fix for people with CFS. I am just suggesting that it might be worthwhile for people diagnosed with CFS to consider thiamine deficiency, whatever the cause, as a possible problem. When I first found out about my thiamine deficiency I looked on the Internet and in books for any reference linking CFS to thiamine deficiency. I was amazed that there were none. Has no doctor considered the possibility that some people diagnosed with CFS may have a metabolic disturbance resulting in a thiamine deficiency? Finding the reason for my illness has answered many question. It explains why graded exercise never helped (the more I did the more thiamine I used up) and rest did help (if I rested what little thiamine I had was preserved). It explains that my illness was not my fault or the fault of my parents. I simply had a vitamin deficiency caused by a metabolic error and it took nine years before a doctor was skilled enough to find it. I think the reason it took so long for any doctor to discover the cause of my illness was because doctors get caught up in the diagnosis. When I first got sick the doctors concentrated on giving me a diagnosis because usually after a diagnosis comes treatment. After I had been diagnosed, the doctors concentrated on the diagnosis and attributed all my symptoms to CFS. Every time I developed a new symptom or a symptom became worse I was told "that's what happens with CFS". I think more progress would be made with patients suffering from chronic exhaustion if doctors continued investigating until a cause is found. Of course this is seen as too expensive, but then so was having me on a disability pension for seven years. I know how improbable my story sounds. Even I cannot believe it sometimes. You may be cynical and think that maybe I was already recovering when I started on thiamine injections but you'd be wrong. I was not recovering and I have not been cured. I am completely dependent on thiamine injections to maintain my health. I know I am extremely lucky and every day I still feel thankful that I am able to live a completely normal life. I ask that you never give up hope. Live life the best you are able and keep asking questions. Eventually you may find the key to your health.
  5. Barb I am patiently waiting for Ivabradine to be available in the US. I know it has been hit or miss for the few people on here that have tried it, but it seems like a much better option for someone like me whose primary complaint is tachycardia. It slows the heart rate without all of the peripheral effects. According to this article it should be cleared by the FDA in the next year http://www.forbes.com/sites/larryhusten/2014/04/17/fda-grants-fast-track-status-to-amgen-heart-failure-drug/.
  6. It has only been about a week now, but since I started cutting my beta blocker in half my feet have gotten significantly better. They are less red at night when the problem was worse and the burning is going away. I don't know if only Bystolic which is a vasodilating beta blocker can have this effect or all of them, but there definitely seems to be a connection. I did read that calcium channel blockers can cause erythromelalgia type pain as a side effect. Unfortunately my heart rate which has been great for a while is starting to climb above 100 again so I am going to have figure out a solution, but the feet were quickly getting bad enough that I am just happy to be rid of the pain.
  7. I have been on a beta blocker for about 3 years now, since the autonomic issues started. My heart rate back then used to be much, much faster than it is now, I think a combination of time, exercise and just taking care of myself better have helped. For the past year I have been on bystolic, a vasodilating beta blocker. The red/hot feet only started about 2 months ago. I am wondering if the beta blocker could be causing this issue as other parts of my system improve. Any thoughts? Has anyone noticed worse pooling after starting a beta blocker?
  8. I have started having this recently and am frankly terrified that it is the beginning of erythromelalgia. Everything I have read makes it sound like the worst thing in the world with little to no treatment options.
  9. Turmeric is ok, but what you really want is Curcumin, the extract from Turmeric. Look up the patented Curcumin called Meriva (there are several brands that sell it), it really helped my overall health.
  10. Make sure you have a full adrenal workup done including cortisol and aldosterone levels.
  11. Make sure you find an acupuncturist who really knows what they are doing. The first one I saw was awful and made no positive difference. The second that I went to could not have been more awesome and I felt better after the first visit.
  12. I would avoid the pyloroplasty especially if you believe your GP is pretty mild. I did not have one, but it has a tendency to cause dumping syndrome from which there is really no coming back. Have you tried Domperidone? It can be ordered from Canada with a US prescription (if you are in the US). You could also try Erythromycin. I have fairly mild GP as well and have had amazing success with acupuncture and the supplement Iberogast. They are running a few large scale acupuncture trials right now for GP, but initial studies were promising and I had some real improvement after a few sessions.
  13. Belching/burping was a real problem for me for a long time. I've done a ton of research and it seems the two most common causes are acid reflux and gall bladder dysfunction followed by gastroparesis. Lucky me it turns out I have both gall bladder dysfunction and gastroparesis which is where my burping came from. I have really cleaned up my diet and as my health improves so has the burping frequency.
  14. I highly recommend not taking any medical advice from Livestrong. Their articles are generally poorly written and meant as clickbait to generate ad revenue. There was basically no substance on that page. It just says ginger may decrease blood pressure and gives no mention of why or how.
  15. I assume when you say palpitations you are referring to pvc's or pac's? Basically they really don't know why they occur. My cardiologist thinks it is just catecholamine release along with a touchy vagus nerve. If you look at statistics though, almost everyone including perfectly healthy people have palpitations on a daily basis. Most just don't feel them. Every study has concluded they are not indicative of any serious abnormalities in a structurally normal heart and the prognosis is the same as a normal person. I have bad days and good days but try not to let them bother me anymore. Some people have thousands every day with no issues. Magnesium and taurine can sometimes help.
  16. I was diagnosed with gastroparesis and biliary dyskinesia which is basically gastroparesis of the gall bladder. While it was really bad when I first was diagnosed, it has been getting better and better along with my overall health. Even when my stomach was at its worst I have thankfully had pretty much zero lower gi issues (constipation etc). My big symptoms were/are bloating, belching (number one issues), and reflux. If you eventually need to go on meds domperidone is really the safest, but not all doctors will prescribe it because it needs to be ordered from outside of the US. There are a few trials which have shown acupuncture to decrease stomach emptying times and it made a big difference for me. I also had some success with the herbal product Iberogast. My new doctor wants me to take curcumin, and herb, which has been shown to increase motility of both the gallbladder and stomach.
  17. Carrie if you don't mind sharing, what in particular did you notice and at what dose? It does have some potential to downregulate gaba receptors which could potentially lead to rebound anxiety. I haven't seen a lot regarding that though.
  18. I went with the regular whole foods brand. Bought it in the store, but really any brand should be similar. Vegetarians are apparently very likely to be taurine deficient because the body can't produce it without meat, fish, eggs etc.
  19. Hey everyone, after a bit of research I decided to give taurine a try. I have been taking 500mg a day for about a week now. Apparently this is on the lower end of dosing, but I am genuinely impressed by its effects. I wanted to try it because my pvcs had suddenly become very frequent. While my dosage is way smaller than this pubmed study, I wanted to give it a shot http://www.ncbi.nlm.nih.gov/pubmed/16797868. Since I started my pvcs have decreased by at least 80% and both my standing and resting heart rate are lower. My heart rate during exercise is also a lot better/more comfortable. I have been reading a lot of studies (apparently my new favorite hobby) and taurine has some really interesting properties. It has been used for chronic heart failure, liver damage, autism, vision problems and a bunch of other stuff. It has been shown to reduce blood pressure in men, but I also saw a study that said it increased blood pressure in women.
  20. Have you seriously looked into a chiari malformation? This sounds similar to me and might be worth considering. Apparently a cervical mri won't necessarily detect it if you have already had one done. I hope you get some relief soon.
  21. Thanks Sue, I don't have the results with me (forgot to ask in my post test stupor) but I don't believe insulin was measured except for at the pre glucose blood draw. It seems a lot of doctors are fairly unaware of how to deal with hypoglycemia. What's weird is that eating meals only containing protein and fat really seem to drop my blood sugar which I don't understand at all. My glucagon response must be somewhat intact if I rebounded from the 39 without eating anything. With all my weird health stuff up until this point nothing would surprise me, including something rare like an insulinoma (insulin producing tumor on the pancreas).
  22. Hey everyone, I am usually pretty good at figuring out how to treat my symptoms or at least understand what is going on, but I am seriously struggling with my blood sugar. I was tentatively diagnosed with Pots about a year ago after two years of symptoms. Thankfully I am doing much much better now in that regard. The only med I am taking right now is Bystolic. I am minimally over weight, but not obese. It seems that my low blood sugar issues have become much more pronounced in the past 3 months (and getting worse), but I can now see signs of it going back a few years (blurry vision, crushing fatigue after eating etc.). I finally had a 5 hour glucose tolerance test done a month ago. My blood sugar peaked around 120 after an hour and dropped to 39 at hour 4 before rebounding to 60 at hour 5. My GP, who I really like, told me to cut back on the simple carbs and eat more protein. He also suggested I see an endo which unfortunately won't happen until February due to a booked schedule. I have never been this strict about eating before and it is not helping. I have been religiously using my glucose monitor for the past 4 days and have yet to see a reading over 95. The readings are consistently in the 60s to low 70s. I know this isn't super low, but I feel terrible at that level. My eyes start to hurt like they are too big for their sockets, my feet get cold and sweaty and I feel pretty shaky. My heart rate issues have also been popping back up during these lows. Currently I am eating 75 -100 grams of carbs per day and a lot of fat/protein. I know old school beta blockers can lower glucose but can Bystolic? My last AM cortisol was normal, but adrenals are likely a bit shaky after years of stress from my health. Any help would be greatly appreciated, I will try anything at this point.
  23. That's a very interesting idea Cala. My thinking was trying to recreate something along those lines, but in a way that you could use it any situation where having that earbud in wouldn't really be acceptable (meeting, class, movie theatre, out to dinner etc.). Maybe that is too narrow of a need for a most, but I have found it coming up in my own life.
  24. If the ultrasound comes back normal and the pain continues, don't let them tell you your gallbladder is fine. I had a perfectly normal ultrasound but a HIDA scan, where they check how well your gallbladder is functioning based on how well it ejects bile, showed that it severely dysfunctional. There can be several problems beyond having stones.
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