Psalm 23

Hi Sarah, I am presently taking mestinon 60mg three times a day. I have been on it almost two years. I started at 30mg three times a day for about 2 weeks then it was increased to what I am presently taking. I was very fortunate in that I have suffered no side effects from it. I think a lot of others on this forum taking mestinon are on a lower dose than I am. I have found it to be very helpful. I hope you have better tolerance for it this time and it helps you. I am so happy for you that a bit of your life has been gained back. Janet

Finally finished watching both videos. It is so nice to put a voice and a face with Dr. Raj and Dr. Sandronl . Both of their presentations are full of interesting information and definitely worth watching. Dr. Raj is a crack up. I can always use a good laugh. I love it when a speaker can interject humor into their talk. Thanks again Alex Janet

Hi Rachel, I live in SoCal. I will email you for more info. about this meeting. Thanks so much for the heads up. Btw It is well with my soul is one of my all time favorite songs. Janet

Hi Alex, Sorry you're still dealing with a headache. Bless your heart for continuing to share what I am sure will be very interesting information. I'm looking forward to watching the videos tomorrow. Wouldn't it be fun if we could actually sit and watch them together with our popcorn. Thanks so much Alex. I hope your headache resolves soon. Janet

Issie, The Nephrologist I see is here in CA. He is really not that familiar with POTS and all its various associated problems. I was referred to him by my Rheumatologist because of the low gfrs and even though they are now normal I still have to follow up with him because of my past nephrectomy. My aldosterone and renin were within normal limits. Your second paragraph regarding cellulose utilization and a particular gut bacteria is very interesting. I have the opposite problem as you do with regard to weight issues. I am on a losing trend again and trying to find a way to put it in reverse. I would try eating more complex carbs myself but I can't tolerate much of that type of food. Really many types of foods or very large quantities of food for that matter. On a different note. Do you still eat at Loving Hut ? We still eat at ours but have discovered a somewhat healthier vegan restaurant called Native Foods Cafe. I'm so glad more of them are popping up. Maybe you have one in your area. Kayjay, I'm with you on the boring food bit. It really does get tiresome having to constantly think about what you eat and how well it will be tolerated and having to keep eliminating things. I went gluten free as well and have found it to be helpful. I will have to give your probiotic a try. Thank you. Janet

Issie, We all do really appreciate the research and information that you share and your desire to help others. I am so happy that you found an answer you are content with and have discovered an effective management plan. You are correct in emphasizing the importance of ones diet. I have been on a low fat mostly vegetarian anti- inflammatory diet for quite a while now and am moving closer towards a vegan diet but am not quite there yet. My concern is that a vegan diet may result in more weight loss which I can not afford. I will have to ask my Nephrologist his opinion on veganism. Interestingly in my case I was diagnosed with CKD stage 3 in 2011. After embracing all of the treatment recommendations made by Mayo Neuro my GFRs returned to normal. I do realize that having a very labile b/p is not good for my kidney ( I only have one ) and causes an increased risk of stroke but it's a problem that still requires a bit of working out I guess. Kayjay, I'm so glad you're feeling better. Maintaining normal sodium levels can be so difficult sometimes. Moving on and keeping your sanity is pretty important. Searching for answers is exhausting and can definitely drive one crazy. I guess I just haven't quite reached a satisfactory end in my search yet. Janet

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I guess for myself I am desperate for an improved level of function and comfort in the present as well as if at all possible an identified root cause for all of these problems. I want it all. Lol. It is very complicated though as there is kind of a standard representative of a neuropathic pots as well as a hyperpots patient. Certainly there are particular criteria to be met for a diagnosis of either but beyond that other sub types exist as well and problems unique to each individual which I'm sure has much to do with the root cause of their condition. For myself I have a blending of hyperpots, neuropathic pots and hypovolemia with a lot of co-existing conditions. At last visit an autoimmune basis was thought to possibly be the root cause. Knowing that didn't change anything though. Recommended treatment remains the same. I'm returning to Mayo though because now I am wondering about MCAS as a possible contributor to my problems. Kayjay I'm sorry you are having such a time with your hypertension and bradycardia. Blood pressure and heart rate can be so unpredictable at times with this condition. I agree with you that high blood pressure must be addressed for many reasons. I have a very labile b/p ( 80/40 - 200/110) so I am on a number of medications because I don't want to pass out or suffer any hypertensive damage. For me I also could no longer tolerate a standing NE level of almost 3000 so I take medication for that. I wish there was another way of managing these problems besides medication but I have not found one yet. So I am thankful at present for these medications. I hope your vital signs stabilize soon. Janet

Hi Alex, Thinking about you. So sorry to hear about the post infusion headache and nausea. I'm glad you're feeling better today though. Continue to rest and not push yourself. Janet

Kayjay, Are you on any medications that are causing a reduction in you heart rate ? Issie, When I had my TTT my tachycardia hit the highest point at 5 minutes when my blood pressure was also at its highest point ( 160/104 ). At 10 minutes I was somewhat less tachy and my b/p was significantly lower. I guess I have an abnormal compensatory response ? I do have a very problematic labile b/p. Janet

Okie, Thanks for starting this thread and comprising a reference list. Sharing information that might help others is so important. I love your enthusiasm. I will have to check out unscented baby products. I had kind of forgotten about them. Katybug, Thank you for the avocado oil suggestion. I will give that a try. I'm sorry you developed an allergy to it but glad to hear that you are able to use coconut oil as a replacement. Sarah, Thanks for bringing up Prascion as a treatment for acne. I hope to be able to give florinef a try in future and it's helpful to know what is available if a temporary acne side effect emerges. Thanks everyone for sharing. Janet

Hi all, Okie that's very interesting about salivary stones as I had one as well but I had to go to an oral surgeon to have it excised. I never thought about it being connected to this condition. I guess that makes sense though with having mouth dryness issues. I have a sore throat much of the time so I use throat lozenges a lot which also helps with breath issues. I have also noticed a bit of an increase in arm pit odor. I use Degree Expert Protection solid antiperspirant /deodorant. I have extremely sensitive rashy itchy skin ( I have eczema). I have been using Lubriderm sensitive skin lotion but I have come to realize that it contains petrolatum which is really not a good thing. Not all of the Lubriderm products contain petrolatum but those that don't contain other irritating additives. It's very difficult finding a lotion that does not contain petrolatum as well as lanolin, dyes fragrance etc. If anyone knows of one please let me know. After reading about others positive experience with coconut oil as well as my sisters testimonial about the benefits of coconut oil I decided to give it a try. I hadn't tried it before as I was afraid of getting it on my clothes. Anyway after applying it I became extremely ill from the overwhelming coconut odor. I was overtaken with nausea and dizziness and had to wash it off and lay down. I love coconut and eat it in all of its various forms all the time so I never imagined I would have such a strong reaction by applying it to my skin. So weird. I use Dove sensitive, unscented soap on my skin. I use Enjoy hair products and very specific Lancome products on my face. I also use prescription Cortisone creams and dental paste for oral ulcers. I wear an abdominal binder most of the time and have found it helpful to apply unscented powder under it especially in warmer weather. If I find a really good replacement sensitive skin lotion I will let you know. Oh, for my lips I use Virtuoso lip balm. No petroleum products in it. Janet

Hi Dave, I'm so sorry you are not improving. I know how incredibly frustrating and discouraging it is in dealing with the ups and downs of this disorder. Up until a couple of years ago I was having a problem with regurgitation and esophageal burning. After having an esophageal manometry test I was diagnosed with esophageal dysmotility. Since starting on mestinon and clonidine ( I realize the latter did not benefit you ) the problem all but disappeared. I'm not sure at this point which of the two meds seemed to have addressed the problem. Could your problem be some type of esophageal dysmotility ? In regards to your SFN pain. I hope you realize some benefit from the ALA as I have found it so helpful. Another rather unconventional thing I do that helps is apply lidoderm 5% patches to the bottoms of my feet. Hang in there. Janet

Hi Alex, Glad to hear you made it through day 1 okay and are set for day 2. I'm sure your doctor and nurse appreciate all of your knowledge and input. I hope your headache has resolved by now. You're in my thoughts and prayers for an uneventful infusion tomorrow. Janet

Hi Sarah, I'm so sorry you've had to go through all of this. I know how incredibly frustrating it is dealing with doctors unfamiliar with our condition and how best to care for our special needs. It is remarkable that there are so few POTS/ Dysautonomia specialists out there. I hope your condition stabilizes soon. Janet

Hi Okie, Yeah, It's pretty crazy that there isn't much help here in California. From my big crash in 2005 to my Mayo visit in 2011 I am almost embarrassed to admit to the number of doctors I was referred back and forth to. No one quite knew what to do with me. I went to UCLA, USC and Ceders. I was referred to UCI but I decided it wasn't worth my while going there. No I can't say that I noticed any difference in my condition while in San Diego. My son attends UCSD so we visit there on occasion. Mostly he likes to come home and visit though. Lol. I should think you would find a dysautonomia specialist somewhere in Houston. Congratulations on conquering nursing school. That's a major accomplishment. I'm sure you'll ace your boards. Nursing is such a wonderful profession. I loved nursing. Best of wishes to you. Janet

Alex I have never heard of taking Agmatine for help with neuropathic pain. I'm going to check that one out. Thank you Dave and Alex for the links and info. Janet

Issie that is all sooo awesome. I'm really excited for you. Thanks for sharing your improvements and the regime you are on. It is immensely encouraging for the rest of us. Janet

Issie I hadn't heard before that some find a worsening of their POTS symptoms with turmeric. Do you know where Dr. G. stands on turmeric ? I never asked him. It was recommended to me by my Rheumatologist and one of the Mayo docs in consultative medicine who I'm sure didn't know much about POTS. Dave I have found quite recently that a gluten free diet has been helpful for my GI symptoms as well as general pain reduction. I guess in the end it really is trial and error with everything. Janet

Okie I'm so glad to hear you will have access to health insurance soon. Trying to obtain proper health care without it would be so expensive. I'm fortunate in that I live close enough (California ) to drive to Arizona Mayo. Well my husband does the driving. Lol. It's about a 6-7 hour drive which seems like forever at the time. Flying would be much faster but more complicated in some ways. It does take a bit of research to find out what local medical resources and testing is available to you. I was unable to find anything in California which seems so ridiculous with all the University hospitals and such. My Cardiologist here is the one who writes prescriptions for Mayo Neuro recommended medications and the one who keeps up with what is going on with me. I hope you find someone who can help you. Janet

In case anyone was wondering I ended up on Medicare because after 2 years of being on disability I was automatically enrolled in Medicare and no longer qualified for the expensive COBRA insurance coverage I had been on since losing the ability to work.

Hi Jeff, Thank you so much for bringing more of an awareness of dysautonomia to the general public and for sharing your story. What a tragic time in your life to help spread the word about a little known disorder. I'm so sorry for the loss of your sister Brittany. She did seem like a very sweet person. Faith, family and friends is what gets me through this very challenging disorder. Janet

Hi okie, Most medical facilities will offer a reduced fee for cash account patients. You should call Mayo and ask them what kind of arrangement they would be willing to make for you. I had Medicare when I went to Mayo and was responsible for 30 % of the bill because they only have a partial Medicare contract. I am presently on a Senior HMO which Mayo does not accept so I will have to switch back to Medicare in October so I can go back to Mayo. I hope you can work something out. Janet

I'm so excited for you Alex. Wishing you all the best and great success with your IVIG therapy. Janet

I started taking Alpha Lipoic Acid 600mg daily about 3 months ago and began to notice a significant reduction in pain after about week 5. ALA can actually be taken up to 600mg twice daily but as much as I would like even greater pain reduction if that is at all possible I'm fearful of a potential vasodilation side effect. Issie had posted that as a potential side effect a while back so I have been watchful of it. Thank you issie. Other dietary supplements I take; Tumeric 1,160mg ( Mayo recommended it but emphasized it had to contain black pepper ) Omega-3 & DHA 2,126mg Vitamin C 1000mg Vitamin E 400 I.U. Vitamin D-3 2500 I.U. B Complex I am also watchful of trying to maintain an anti inflammatory diet. Wishing you success. Janet