Psalm 23

Kitt you are absolutely correct about sugar and the damaging effects it has on our bodies. If one can eliminate it completely as you did or at least reduce the amount consumed that would help considerably. It's unfortunate more people do not have an awareness of just how harmful sugar can be. Thank you for sharing the 60 minute video clip and getting the information out there. Janet

Hi Lynn, I'm so very sorry for all you are going through. I will be thinking of you and keeping you in my prayers. Hang in there and don't let go of your fighting spirit. Keep us posted on your progress. Janet

Carrie I so know where you are coming from as one who has also been so discouraged at times and disappointed by yet another failed approach to better manage my symptoms and get my life back. I guess throughout these many years of dealing with chronic health issues I can't let go of the notion that there might be something else out there to try, within reason of course. Please don't give up hope Carrie. It may not be a dietary change that makes the difference but something else yet undiscovered by you. We are all so very different in what improves our condition. Janet

I just realized that I had failed to mention that my pots was not secondary to food allergies so the potential for some kind of symptom relief while on a gluten free diet does exists even for those of us without actual food allergies.

Carrie I totally agree with you in regards to a persons dysautonomia resulting from any number of causes and certainly not always dietary but unless a person tries something different how will they know whether or not they are missing out on something potentially helpful. For myself I really don't expect to realize improvements beyond GI but I will take any improvements I can get as long as I am not doing myself any harm in the process. If in the end I find any positive effects are outweighed by any negative effects I can always resort back to my previous diet. In your case, you know through your own personal experience that a gluten free diet does not benefit you in any way and is only harmful in terms of not meeting your dietary needs and making you feel worse. In my opinion, except in the case of those who do have very specific dietary restrictions, it's all about trial and error when it comes to diet. Janet

I decided to go gluten free about a month ago and am feeling much better for it. At this point the improvements realized are GI but it's only been a short time so there is always the potential for other symptom improvement. I initially wasn't very enthusiastic about eliminating gluten as I have already had to embrace a very restricted diet for better symptom control but it's all about pursuing whatever might be helpful so in this instance it's worth the food sacrifices for me. My husband and I regularly dine at a local vegan restaurant as well. I wish it was entirely gluten free but they do at least offer some gluten free entries. A few weeks back I discovered a couple of different rice pastas that were quite delicious. Let the culinary adventure begin. Janet

Hi Alex, I have noticed an increasing problem with some of what you describe but also an increasing problem with shortness of breath as well as other symptoms ( I do not have asthma). I have been on mestinon 60mg tid for about 20 months. I don't think my problems are related to taking mestinon though. I am however wondering about MCAS as being the possible source for some of my problems. That would kind of tie in with Dizzysillyac's suggestion of allergies as being a possible cause for what you describe. I hope you find some relief soon. Janet

I am on Clonidine 0.1mg twice daily ( breakfast and dinner ) The 0.1mg was meant to be a starting dose and at that dose I did not experience any significant side effects but when the dose was increased to 0.15mg I had significant problems with increased fatigue (which was already a huge problem ) and blurry vision so I went back to taking 0.1mg. Even at what was meant to be a starting dose it has helped immensely with severe tremulousness and tachycardia. In addition to Clonidine, I am on Mestinon, Plaquenil and Neurontin. Up until a few weeks ago I was also on Propranalol 5mg twice daily but that is temporarily on hold. I have never been on Midodrine or Florinef but they were suggested as possible add on treatments if greater blood pressure stability was achieved. I have a very labile blood pressure as well as a very high NE level and for me Clonidine has worked exceptionally well. There have been a number of past postings regarding forum members various experiences with Clonidine and the reviews are pretty mixed. Looneymom, I'm so sorry to hear how your son is still struggling so. Janet

Issie, Thanks so much for the ALA link and all the other information. I'm sorry you may not be a candidate for taking ALA. Does not sound like a good thing for you or anyone else with sulphur issues. I am going to continue with it and see where it takes me as I don't have any sulphur issues and it does seem to help significantly with pain. With vasodilation as a possible response though I will have to watch out for that one. I'm so glad you are seeing such positive results in taking the grapefruit seed extract. I didn't get to Sprouts yet to check out what they offer. I do believe in all of this one has to review all the information that's out there ( I do so appreciate the vast amount of information everyone provides ) and make an informed decision for them self. I find it so helpful though to hear of others failures or successes with particular approaches at symptom relief. Janet

Is there anything one should be concerned about in taking Alpha Lipoic Acid ?

Jackie I'm so sorry. How awful to have terrible back pain develop at such an early age. Back pain can be so debilitating. I didn't actually have any problems with my back until after I had major surgery. I had to have one of my kidneys removed and for pain control an epidural was left in for two days so until recently I had always blamed the chronic lower back pain I was left with on the epidural. In addition though to the intermittent episodes of intense bone aching lower back pain I was left with after the surgery, I started having problems with episodes of dizziness, shortness of breath, tachycardia, palpitations, upper abdominal distention after eating ( I was assessed by a surgeon and a gastroenterologist who could not determine the cause ) etc. Sound familiar. Lol. Some vague symptoms of dysautonomia had developed years earlier after I had meningitis but pots symptoms hit me after the kidney surgery. Of course I can not say with any degree of certainty that blood pooling is the cause of my lower back pain except that it is an interesting coincidence that wearing my abdominal binder completely eliminates the problem and something else of significance that I realized a long time ago was that sitting or laying down eliminated the pain. Prior to wearing the binder I had never really found anything else that helped much. My problem has never seemed muscular and I have never had spasms. It's always felt very deep and aching.I'm sorry about your back spasms.That sounds like such a miserable thing to deal with. I think in the end it's pretty difficult to determine with any degree of certainty how things connect with one another or what is resulting in what especially in the land of pots. I hope you find some relief soon. Janet

Issie, At my sons suggestion and after noticing others on this forum who take Alpha Lipoic Acid I decided to give it a try. I have been blown away by the positive results. I have been taking 600mg daily for 6 weeks now but have been afraid to get overly excited about it as I didn't want to set myself up for disappointment. While to date it has not yet impacted the below the waist pain, it has reduced the above the waist pain by at least 60 %. I plan to wait a bit longer then up the dose to 600mg twice daily and hope for even greater pain reduction. Oh, about the same time I started the Alpha Lipoic Acid I started taking 1000mg of vitamin C and 400 IU of vitamin E. Thank you for the links and for sharing your success with grapefruit seed extract. I'm going to pick some up tomorrow when I am out. Do they carry it at Sprouts ? When I am able I will spend more time reading the interesting links you posted. Janet

Hi Jackie, My answers to your questions; 1. I adjust my abdominal binder to a rather tight fit. It feels most effective for me if worn that way. What has amazed me the most about use of this device is the immense way in which it has helped with what I assume is postprandial pooling, which used to cause me such misery. I also noticed the intermittent aching lower back pain I had suffered with for years disappeared when the binder was on. I have observed some information lately about lower back pain and pots so maybe its related to blood pooling issues and that is why the binder helps my lower back pain. In general, I have found such comfort in my binder I don't like to take it off because when I do I feel a huge rush of what I assume must be blood flooding my abdomen. I have never worn Spanx so I know nothing about that. 3. I actually have my exercise regime posted on the recent exercise poll. I exercise with the abdominal binder on but not the compression hose as they are difficult to get on and I don't exercise for very long unfortunately. I wait and put the compression hose on after I have showered and they basically stay on the rest of the day. Your thought regarding the body's potential reliance on compression gear is one I have also entertained. It's a bit disconcerting. Janet

It still amazes me the way this condition can cause one to go from being such an exercise enthusiast to one who struggles with such seemingly easy activities. A year and a half ago I had reached a point of such confusion about what I should be doing to improve my condition in terms of exercise I just stopped doing anything. The years prior I had been on and off sick which made getting back to any kind of regular exercise program oh so difficult and the path of least resistance was to just stop, which was what I did until I sought out help from Mayo. The exercise recommendation made by the Neurologist there was to initiate a regular exercise program which should be daily, and include something such as walking for 10 to 15 minutes or use of a recumbent bike for a similar length of time to start. Goal level of activity was to be 30 to 45 minutes daily. Exercises to strengthen lower limb and abdominal muscles also needed to be incorporated into the plan. At this point in time I am able to manage a slow, flat surface walk, mostly daily. I can go for about 30 minutes. When I try to push for 45 minutes I spend too much time afterwards trying to recover. Mornings are my best walking time. I try to do the lower limb and abdominal exercises later in the day. I wish I could say I feel much better for it but I don't. I'm just following orders. It's such an immense frustration for a once athletic type. I'm trying to be optimistic that more improvement will be realized over time. Janet

I wear both an abdominal binder and waist high, 20-30 mmHg compression hose ( as had been recommended by my neuro ). I started out by just wearing the abdominal binder which was extremely helpful and didn't really limit what clothing I wanted to wear but as pooling issues worsened I had to start wearing the compression hose as well. I have only been wearing the hose since last fall and it was after the weather started to cool so I'm wondering how I will be able to tolerate them in the summer. I have tried going without them a few times telling myself I really didn't need them but noticed my legs felt heavier, swollen, appeared discolored and I got symptomatic much more quickly. I don't like the thought of not being able to wear shorts and skirts in the summer ( silly I know ). I did find one company that sells compression capris but they are only 15-20 mmHg. I guess I will see how it all plays out. Thanks for all the links and input. Janet

Wow. That's a great report Issie. So happy to hear how well you are doing. I'm continuing to make my move toward a vegan diet but not quite there yet. Janet

Way to go Issie. Thanks for sharing. I'm so happy for you. I know how scary chronic kidney disease can be and to be able to reverse it as well as reverse a cardiac condition is totally awesome. What an immense encouragement you are to all of us. It helps us all to know that what seems the impossible is possible and to remain optimistic. Keep us updated on your progress. I don't know what bump means. I hope that's not a bad thing. Janet

Congratulations. That's quite an accomplishment. What an exciting moment for you both. Janet

Oh my goodness, I meant gluten free diet not glutton free diet. Lol. Also, no alcohol. Complete intolerance to that.

Kitt, That's interesting that you should mention moving toward a mostly glutton free diet as that is the most recent change in my diet. Actually only in the past few days so I am not noticing a difference yet but am hopeful. Anything not harmful is worth a try. An improvement in neurological function would certainly be welcomed. Janet

No one else in my family that I am aware of. A lot of autoimmune issues though.

Alex, Thank you for that. I am not usually that reactive but I guess being a nurse makes me feel more responsible and held to a higher standard, if you will, for communicating accurately anything that is health related. I am in a constant battle with brain function issues and do have difficulty expressing myself at times so especially with the more serious topics I try so very hard to eliminate any misunderstandings. Very kind of you to apologize. Anna, Blood vessel spasms could certainly cause angina like chest pain. Also, in regards to beta blockers, their potency is significantly increased when prescribed along with something like clonidine. Janet

Aimes, I sure hope you get some relief with the new meds and figure out what dietary changes are helpful. I guess I was fortunate that Dr.G.had already moved before my referral. I'm sorry for you having to travel so much farther. I am planning a return visit for a variety of reasons, one of which is to talk with him about MSAD as I am wondering if that is another problem I have been dealing with. The search for answers and solutions continues so we just keep moving forward. Take care. Janet

Alex, I'm so glad chest pain is not a regular problem for you anymore and that getting off beta blockers helped your situation so much. I hope I did not sound as if I was minimizing chest pain as that was not my intent. I think if one has gone through comprehensive testing to rule out a serious cardiac condition and the results are negative and there is a question of test validity or Cardiologist competency then one needs to get another opinion. You are correct in that all symptoms cannot just be attributed to having dysautonomia. The article excerpt I posted is just a proposed theory about pots and possible reasons for chest pain. Not about chest pain in general. Again, I am not in any way what so ever suggesting that one should just ignore chest pain !

Hi Aimes, I'm so sorry to hear that you have been having another bout of severe food intolerance. I go through episodes like that and have to resort during those times to eating/drinking not as healthy as I would like. Interesting view your gastro doc has on gastroparesis and gastric empty scans. I guess they all have different opinions on various things. I had a gastric empty scan done in 2010 which came out abnormal. That result helped explain some of the symptoms I had been having. When I went to Mayo the following year the gastric empty scan was redone along with lots of other tests. I only bring that up because I thought you had been to Mayo recently and wondered had the subject come up. I had originally thought my visit would be emphasizing neuro concerns but it went off into numerous directions. I hope you start feeling better soon. Janet