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Psalm 23

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  1. That's great that you were able to have your question answered and what a blessing to have a Cardiologist that is so responsive. Not very many of them will call you at home. He sounds knowledgable and caring. That in and of itself is reassuring that this Cardiologist has your son's best interest at heart and will continue to work out an effective treatment plan. It usually takes some adjustments and or additions to get it just right. I'm so glad to hear that PT is going well. Hopefully that additional dose of medication will help with the continued shaking. I am sorry the poor sleep situation has not yet improved. That can be challanging to manage and certainly poor sleep does have a negative effect on brain fog. Sounds as if you are moving in the right direction though and hopefully with a bit more time and adjustments those issues will improve. Janet
  2. You are correct in that many hours are required for filling out and putting a package of material together properly. I don't remember how many hours I spent on it but I do remember it was a lot. Attention to detail is critical.
  3. Hi looneymom. That is a really good question and probably a pretty difficult one for someone to answer. Corina's answer is best. Your son's Cardiologist would be the one to set acceptable heart rate parameters. For myself since starting on clonidine in addition to the other medications my usual heart rate range is 60's-90's. Before medications it was 80's-150's. I hope your son's vital signs stabilize and you get your questions properly addressed tomorrow. Janet
  4. How wonderful. I'm getting my list together. Thank you Naomi.
  5. looneymom How wonderful that your son's PT session was better. That must have been encouraging. I really hope your son realizes some positive effects from being on clonidine. While it has been immensely helpful for me with some of my symptoms I'm afraid improved sleep was not one of them. I wish I could tell you otherwise but everyones response to medication is so different maybe improved sleep will be a benefit your son will experience. Prior to Mayo I had been taking elevil 10mg at bedtime which really helped me with sleep and pain but I was told to discontinue it as it caused a worsening of POTS symptoms. I was told to try meletonin but it did nothing for me. In the end I was hit with severe post shingles pain, fibro pain and probably small fiber neuropathy and started requiring increased dosages of neurontin. After reaching a dose of 2400mg a day I realized I had started sleeping 7 hour and sometimes 8 hour stretches at a time. I'm really sorry. I wish I had something more helpful to report. Janet
  6. looneymom. You are right in that the POTS body seems much more vulnerable to acute illnesses and unfortunately long term residual negative effects from those illnesses. I can't imagine adding in all the hormonal changes that go along with the teenage years. My heart goes out to you and your son as you seek out answers and some kind of effective treatment. Issie. Thank you so much for your words of wisdom and encouragement. You're right in that we are a very strong group people. I guess I am still on a learning curve as far as how best to manage my condition. As far as strength goes, we know where are ultimate strength comes from. Janet
  7. If I remember correctly the functionality form which addesses symptoms and limitations came in the mail after the initial filling form but it was in 2006 that I went through this process so things may have changed somewhat since then. Back then I was either unaware of a website to refer to or it was not in existance yet. I do remember adding in a lot of addtional pages describing in great detail what I was going through. I think I was also a bit paranoid about all of my paperwork ending up in the correct place so when I had a contact person assigned to my case and a telephone number I called to varify that that person had in fact recieved my package. I made copies of everything I submitted and I had my husband read over it as well to make sure I had not forgotten anything so definitly having someone who is close to you read over your material is very helpful. Really take your time filling everything out. Janet
  8. One thing I need to make mention of is, if anyone is wondering why I did not use an attorney it was not because I thought I didn't need one and could apply for SSDI on my own but rather it was out of ignorance. I did not realize until some time later that most people hire an attorney. Janet
  9. Interesting discussion. There is still much to be learned and hopefully in time we will have answers to all of those questions. I have for the better part of my life been very anti -medication unless absolutely necessary so I am still shocked when I realize what I have been reduced to in terms of the number of medications I am presently taking. A degree of desperation sets in seeking something that will provide some symptom relief. The extreme jittery ( feeling like you want to jump out of your skin feeling ) is pretty horrible and exhausting. The tremor in my hands would get so bad I could hardly use them. Other then medication and sitting down what else helps ? Inspite of how immensely helpful clonidine has been I do have my concerns about long term use. I have been on it for 18 months but have already started to notice old symptoms returning accompanied by new ones. My thought was that if for some the NE rise is a compensatory response that eventually it would overide the medication suppression especially if there has been condition progression. I wonder if taking mestinon along with clonidine helps address the symptoms that might have worsened when the possible NE compensitory mechanism was altered. Just some thoughts. There are so many complexities that go along with this disorder. Janet
  10. Hi Jangle. I have been on Mestinon for about 18 months. It has helped control my tachycardia ( in combination with clonidine ), palpitations, presyncope and fatigue. The first six months or so I started taking it I realized significant symptom improvement but since then I'm not sure if the effectiveness is less or my condition has worsened. I have experienced a number of set backs this past year in terms of acute illnesses and an increase in physical and mental demands. In regards to side effects I have not experienced any so even if I am not realizing the same degree of improvement I had in the begining I will continue taking mestinon as I am desperate for any degree of symptom improvement I can get. Actually in addition to the earlier mentioned improvements, I believe it has also helped me with thermoregulation and upper GI motility. Janet
  11. I believe.Hyper Pots is just the abbreviated term for hyper adrenergic POTS. I am a bit confused myself over the Mayo terminology. My diagnosis from them is POTS with hyperadrenergic response amongst other things. I need more clarification when I go back the next time. In any event I have high NE levels. Supine 1236 and standing 2922. My supine dopamine level was also elevated. My worst symptom was extreme tremulousness / jitteriness. Of course the longer I tried to stand the worse it would get. I dont experience many of the other symptoms that are common with high NE levels such as headaches, anxiety and excessive sweating ( I have the opposite problem ). I do experience more of the typical neuropathic POTS symptoms. I was prescribed clonidine back in 2011. For me it has been a wonder drug in terms of controlling the extreme tremulousness. The starting dose was 0.1mg but I stopped there because that was as high of a dose as I could tolerate. I'm so sorry for what your son is going through. I hope you find some answers and helpful treatment.
  12. Hi Corina. You're welcome. I am so thankful for what others have shared and continue to share. I have learned much. That's what makes this forum so wonderful. I'm so sorry you may have to undergo gallgladder surgery. Janet
  13. It's interesting the way we all react so differently to the same medications. It definitly is trial and error. Janet
  14. Hi Khaarina. It sounds as if you have been given some very good advice. One thing that can not be over emphasized is the importance of carefully filling out the functionality forms. Give a clear detailed description of the difficulties, limitations and challanges you encounter every day. Don't limit yourself to the small writing spaces they give you. Add your own pages. In regards to records I sent in everything. I wrote out my own history. I included when all my various symptoms began, what acute illnesses came up, every doctor seen, all the diagnostic tests that were done, how hard I had tried to improve my situation and my level of function. I gave them a very clear picture of a woman who was desperately trying to regain her life. I really dont know what my doctor submitted on my behalf but I assumed it all fell on me to make my case. I did not use an attorney and was granted on first try ( 2006 ) but I don't think that is the norm. Most everyone I know of that has applied for SSDI has used an attorney. Best of wishes to you, Janet
  15. I don't have esophageal burning but I did start having a problem with regurgitation, epigastric pain and choking several years ago. I went to Mayo in 2011 for Neuro evaluation and ended up referred to a number of different specialists. The GI doc I was referred to ordered an esophageal manometry test which showed esophageal dysmotility ( ineffectve hypocontracting ) which then explained the problems I was having. There does seem to be a correlation between having autonomic neuropathy and problems with the upper GI tract as well as the lower GI tract. I'm not sure if it's the clonidine or the mestinon but since starting on those meds the problem seems to be greatly reduced. I hope you can get your problem diagnosed and find some relief. Janet
  16. Hi NMPotsie. I hope this post finds you continuing along the path of a positive recovery. Again I am so sorry to hear of all you have gone through. In regards to potsies having sedation there was something else that came to mind that I found immensely helpful that I would like to share. I have a history of horrible prolonged dizzines, nausea and vomiting after sedation. A few months back I required sedation ( Versed ) for a procedure so I prepared for the worse but this time I was given Reglan and lots of extra fluid before and after the procedure and amazingly I tolerated the sedation without any problems. I knew to request lots of extra IV fluids but I hadnt thought about Reglan before which used to be commonly given for general anesthesia. I hope this information might be useful for someone else with poor sedation tolerance. Janet
  17. Thank you so much for sharing your experience. What a terrible thing to have to go through. Wow, all from engaging in an activity that is supposed to be helpful. I was doing yoga for a while but after having the flu I have never quite recovered enough to go back to it. Makes me think twice now about whether or not it's worth it. I do have a friend that suffered a shoulder injury doing yoga. I'm so glad you're doing better and recovering. On a different note, I really want to thank you for information you posted quite a while back regarding abdominal binders. I decided maybe I should give one a try as I seem to have a lot of abdominal pooling especially after meals. I ordered one of the Gabriella binders you had recommended. Wearing it has helped sooo much I dont like to take it off. . Thanks again and best wishes for a speedy recovery. Janet
  18. Issie. I'm so happy for you that you're seeing such noticable improvements with eating vegan. Its amazing that a change in diet can have such a huge impact. I know for myself what foods can cause me an enormous amount of grief. Thank you for sharing your success. It's very encouraging. What we eat makes all the difference in the world. The old saying we grew up with, you are what you eat, is sooo true. Of course what is beneficial for one person may not be for another especially since we all seem to have such different associated GI issues and special dietary needs. Im really glad you found a program to help with making sure you are taking in what is nutritionally necessary. That can be more of a challange when you are a vegan. That's great that you have a Loving Hut near you as well. I knew it was a franchise but I had never looked to see where outside of California they might also be. Its interesting that each one has its own menu. It sure helps that your husband is supportive of a completely different way of eating. My husband is as well. I have moons on my finger nails but I can't seem to get rid of the terrible ridges. Janet
  19. Thank you so much for sharing this extremely interesting video and for all of the valuable information. My B12 was normal 18 months ago but I am wondering if it still is as my diet is more vegetarian than it was and I have started to develope new neuropathy symptoms. Maybe I need to add another dietary suppliment to my growing list. Issie. I will be anxious to hear about how you do with your vegan diet. I have thought about going down that path. When my husband and I eat out we go to a local vegan restaurant called The Loving Hut because its really good and also one of the few places that serves food I can tolerate.
  20. Hi Kris. I'm sorry you are having to deal with this very frustrating GI problem. I think the key really is sticking to a strict gastroparesis friendly diet which as was mentioned earlier is a low fat, low fiber, small frequent meal diet. For myself I have found a somewhat greater tolerance for slightly more fiber than fat but as is the case with all of us afflicted with this problem one day may better than another day. The gastroparesis websites will provide you with recommended dietary guidelines and some of the forums actually have recipes posted. Motility medications seem not to be recommended unless absolutely necessary as some of them such as reglan have really serious side effects . Lately I have to stop myself from feeling somewhat envious when I see other people eating whatever they want, in whatever amount they want and not have to deal with severe consequences. They have no idea how fortunate they are. Hang in there. At least now you have a diagnosis that explains your symptoms and I know at least for myself that knowledge made me feel empowered and able to be proactive in managing my condition. Janet
  21. Katybug. It is so interesing that you should ask as I had wondered about that myself. In 2011 I went to Mayo and was diagnosed with autonomic neuropathy and rediagnosed with POTS along with other things. Im sure a test for Lymes disease would have been included in all the lab workup. I have a long and complicated health history that goes a way back but it was after a trip in 2003 and being in a tick residing area that I got really ill and started completely falling apart. I have heard that Lymes disease is problematic to diagnose. Janet
  22. Kris4444 Its Small Fiber Neuropathy. Im so sorry for all you are going through. I know how frustrating it can all be. I am an optimist and am always hopeful that something new and helpful is just around the corner. At times though I simply put my situation in perspective and am thankful that things are not worse than they are. I had lunch with some girlfriends yesterday. One of them, the youngster of the group at age 44 has been bravely battling metastatic pancreatic cancer for the past year and a half. I cant even begin to imagine what she is going through. Issie If you can get some results from an herbal remedy I think that is great. Any nonpharmacological approach is always the best. I can certainly understand your eye concerns and plaquenil.
  23. I do. I had a normal brain MRI in 2001 which was ordered because of a syncapal episode but then in 2007 I had a repeat MRI which showed minimal scattered T2 hyperintensities. The radiology report read nonspecific white matter changes, differential includes small vessel chronic ischemic changes, demyelinating disease, post inflammatory/infectious change versus others. Clinical correlation advised. The report kind of scared me but I have seen several neurologists since and had two repeat brain MRIs that were basically the same and no one seems concerned so Im not either. Demyelinating disease was ruled out by the way. So the reason for the MRI change was never really determined.
  24. Issie. My lupus has always been mild so Im not really sure how much of an impact the plaquenil is having on lupus related pain any more as my pain level in general has been steadily increasing. I have fibro and possibly SFN (burning feet etc.) but wont be able to get that properly addressed until I get back to Mayo. At present Neurontin and Lidoderm patches are what is most effective at helping my pain. I did have low GFRs back in 2011 and I only have one kidney ( I had a left radical nephrectomy due to tumor) so my Rheumatologist says just keep taking the Plaquenil. My joint pain is pretty minimal as compared to my other pain issues. I think one significant benefit of being on Plaquenil for me is rash control. I had been afflicted with the most horrible scalp rash that disappeared after six weeks of treatment. I do still run low grades fevers but when one ends up with so many different coexisting conditions its hard to tell what is being caused by what.
  25. I had severe gastroenteritis back in February. I have never experienced anything like it before. Ended up in the ER for hydration and med for pain and nausea. Its so frustrating the way acute illnesses seem to have a lingering negative effect on POTS symptoms.
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