Psalm 23

Freaked your thoughts are very interesting and your description of experiencing a reoccurring low level meningitis like feeling is the same as what I experience and have related to my doctors before. It was after being severely ill and hospitalized with meningitis that I was left with residual problems that have increased in number and severity over time. I went from having vague dysautonomia symptoms to autonomic neuropathy and POTS etc. It could be for some ( the post viral POTS in particular ) that they have experienced a less severe undiagnosed case of viral meningitis that led to dysautonomia and progression of symptoms. I stumbled upon an older Mayo research article a few years back which discussed a possible correlation between autoimmune autonomic neuropathy and exposure to a viral infection that resulted in a significantly elevated CSF protein. That article was what sent me off to Mayo in search of answers. I do realize that not everyone with a POTS diagnosis has autonomic neuropathy but many do and an autoimmune basis seems to be coming up more in the literature these days. Nerve damage can be a POTS cause for some. We mostly hear about peripheral but it would seem that CNS damage could be a contributor as well. The number of reasons for developing this condition would appear to be enormous. I believe continuation in the pursuit of ones root cause is important though and empowering. Janet

gjensen I believe there is a good chance the abdominal binder may help your sitting b/p. Besides helping stabilize my b/p in various positions the binder helps significantly with postprandial pooling. I can't eat without it being on or I am miserable. Apparently for the most success with it one should put it on before getting out of bed and remove it while laying down before going to sleep. The binder I wear is a Gabriella Breathable Elastic abdominal binder. Newer articles now talk about how much more effective abdominal binders are over hose for those that pool blood as there is a much greater amount of blood pooling in the abdomen versus the legs. I hope you receive as much help from your binder as I have with mine. Janet

I wear compression hose and an abdominal binder most of the time and have found them to be extremely helpful especially the abdominal binder. I order the hose from Discount Surgical Stockings and the abdominal binder from Amazon.com. Janet

Hi Freaked, I had a spinal tap done to diagnose meningitis. Protein level was 112. Symptoms of dysautonomia followed. I have had three brain MRIs that show small lesions. I have degenerative disk disease that is present on my MRIs of the spine. Hope this info helps with your theory. Janet

Hi Sarah, What an outrageous experience to have to go through. You go in search of help and all you get is unprofessionalism and cruelness. What is the matter with what are supposed to be health care professionals these days. I'm so very sorry for all that you are going through. I hope next Tuesdays appointment with the EP proves extremely helpful. Keep hanging in there. Janet

Ashley, I also think I see shadowy things moving in my periphery but when I turn to look nothing is there. It's very startling. There are all those other oddities as well. So frustrating I know and problematic especially when trying to drive. I hope you find something that helps. Maybe it will be florinef as AllAbout Peace has had such success with. Badhbt, That's great that going gluten free has helped improve your visual problems. I went gluten free about 5-6 months ago and have not realized any visual benefit from it but have realized significant GI benefits. I think it's definitely well worth trying gluten free for whatever benefits may be possibly achieved. Maybe someone else will have the same visual improvement as did you. Hope, My vision is also better on the generally less symptomatic dysautonomia days and I am so thankful for those days. AllAboutPeace, Thanks for sharing about how florinef has helped reduce your visual disturbances. It's something I hope to be able to try soon. I wonder if it helps because it results in fluid retention and potential improvement in cerebral perfusion which can be impacted in both a sitting and standing position. How wonderful that you have regained the ability to drive. I drive locally but not on freeways anymore as I no longer feel safe to myself or others. I'm hoping florinef may change that. Janet

Hi Rosey, It would appear that everyone's response to a TTT and the way in which a TTT is done varies considerably. I suppose there is the Cardiologist version TTT and the Neurologist version. My TTT was done at Mayo and was only 10 minutes long with no medication infusion and was done in conjunction with all the rest of the autonomic reflex screening. At five minutes I felt nauseated and dizzy but made it through okay with passing out. I never had to endure a longer TTT because my local Cardiologist who diagnosed me with POTS in 2006, 2007 and again in 2011 ( when the light finally came on and I realized I needed to go to Mayo for help ) said I didn't need to have a TTT as it wouldn't change his diagnosis. I guess I should be thankful. If you are planning a trip to Mayo keep in mind that they repeat most all of the outside testing that has been done so be prepared for the possibility of another TTT. If you are referred to the Neurology dept I should think it would be a ten minute one as was mine. In answer to your question. Prior to my TTT I experienced a few actual syncopal episodes but since having my TTT I have had none. I think in large part because of effective treatment and a greater recognition and response to presyncopal symptoms. I hope it all goes well for you and provides much needed information for a diagnosis and treatment plan. Janet

Hi Sarah, I hope you're feeling better today. In response to your question, if there is not an urgency I would seek an additional opinion especially since you are venturing into therapies beyond pharmaceutical. CC sounds like one of the best places to get a second opinion. Of course the outcome of your apt on Tuesday will give you a much better idea of what feels right to you. Chaos is right in that ablations are not generally recommended for POTS patients so extremely careful consideration should be given if anything like that were proposed. I did find some informative articles about the bi-ventricular pacemaker/cardiac resynchronization therapy. I found it interesting that the old type pacemaker addressed bradycardia/arrhythmia issues primarily but the bi-ventricular pacemaker addresses issues beyond that. http://my.clevelandclinic.org/heart/services/procedures/biventricular_pm.aspx You are very smart and informed and have a lot of experience from which to draw in making a decision you feel comfortable with. You also have a great deal of strength within. Hang in there. Janet

Hi Underwater Thing, I'm so sorry to hear that your walking symptoms have worsened. Mine are slightly worse then in my previous post. I don't have any answers yet but hope to after my return visit to Mayo. I have a growing list of questions. I will share if I find out anything. Janet

Hi Sarah, I'm so very sorry you are having to go through such serious scary cardiac issues and at such a young age. It seems so unfair. After trying the pharmaceutical management route for so long and not benefiting sufficiently it doesn't sound like you have too much choice left but to consider other treatment options. I'm so glad you saw a Cardiologist this morning and had a halter monitor placed.That should provide some very useful information. Dr Huang the Cardiologist you are seeing on Tuesday sounds very accomplished. That's great that you don't have to wait too long to see him. I will look forward to hearing about the outcome of that visit. I'm going to read up on the proposed procedures. We'll talk soon. Janet

lynnie, I can't imagine that you would not have access to full testing through the neurologist to which you have been referred. If it is not showing up on your itinerary it may be that the neurologist wants to evaluate you first to decide what all to order. I went to Mayo,AZ two years ago at age 52 and went through autonomic reflex testing, supine and standing cat levels etc.etc.and saw Dr. Goodman (neurologist) as well as many other docs. I will be returning to Mayo next year for reevaluation at age 54. I can't imagine that Mayo,MN would be different then Mayo,AZ in regards to age restrictions for testing. I do not remember the term POTS clinic used at Mayo,AZ though so maybe that is something unique to Mayo,MN although that still should not make a difference if the neurologist you see recommends all of the pertinent tests. Best wishes to you on your quest for answers and help. I hope your trip to Mayo proves fruitful. For me going to Mayo was extremely helpful. Janet

I have a fluttery sound that occurs in both ears when I have been standing for too long. It disappears when I sit or lay down. It seems to be more problematic on worse dysautonomia days. Other than getting off my feet I haven't found anything else that helps me. My mother has a problem with episodes of ringing/buzzing in her ears. I took her to an allergist and he suggested it was allergy related and recommended she take an antihistamine as needed which seems to have helped her. I hope you find some relief. Janet

Hi Jackie, I have been contemplating acupuncture lately as it's one of the few things I have not tried. I'm in a fibro support group and we had a guest speaker a few months back that gave a really impressive lecture on acupuncture. I'm a pretty hard sell but have been convinced to at least give it a try. The price quoted was 75 dollars per session. Twice weekly sessions for one month were recommended before making a decision as to the effectiveness of it. I have heard a per session price range of $50-$150 so it can get rather pricey. Like you I believe my immune system is what's behind my pots symptoms as well as my fibro, peripheral/autonomic neuropathy etc. symptoms so I would be hoping to get to the root of the problem. I hope you get some additional feedback on this. Of course the difficulty in evaluating how effective acupuncture is for an individual lies in how accomplished and knowledgeable the acupuncturist is. I think very careful consideration must be made in deciding which one to go to. Janet

Katybug, Those are great suggestions and very helpful for one suffering from cognitive decline for whatever reason. That's so great that you have found brain activities that help you and may help others as well. I find playing scrabble, sudoku and piano to be helpful. I have found for me that engaging in any brain challenging activity seems to require a great deal of discipline though as fatigue can be so interfering and the path of least resistance is to give in to it. Thank you for reminding us of the importance of remaining engaged and proactive. Janet

Blue, What you describe sounds just like me. This marked reduction in brain function and all the oddities that go along with it is my most distressing symptom I would have to say. I wonder to myself how bad can it get and what can be done to improve it. It is very frightening to say the least. In my case I do have headaches but not migraines so I don't know whether to blame the problem on POTS or one of my other various diagnosis. I do notice that when I am standing the brain dysfunction problems are worse so it leads me to believe that maybe cerebral hypoperfusion is responsible to a degree. You're right in that it's important to have concerns evaluated and not make the assumption that everything is a result of having pots which is easy to do sometimes. I'm sorry you are having to deal with this distressing issue. I hope you get some answers. Janet

Welcome to the forum LittleOne. Janet

Hi Rachel, I had rheumatic fever at around the age of 10. My symptoms were fever, aches and pains, lethargy, sore throat, cough I believe. I don't remember if I had chest pain or not. I had pleuracy several years back which was chest pain to the extreme so I think I would have remembered that if I had experienced it along with the other rheumatic fever symptoms of so many years ago. I don't believe pleuracy is associated with rheumatic fever in any way and I was told would not necessarily show up on a chest x ray. In any event, as a result of having had rheumatic fever I was left with a very loud murmur and mitral valve regurgitation which has worsened over time to moderate mitral valve and moderate pulmonic valve regurgitation. I actually have a followup echo for that in a few weeks. Has Tyler had an echo cardiogram before ? I'm sorry Tyler is still not improving and answers are so slow in coming. Janet

Hi Jackie, Two years ago I started taking Clonidine 0.1mg Bid and Mestinin 60mg Tid which restrained my tachycardia but because of a continued very labile b/p with upper limits of 200/110, Propranalol 10mg Bid was added in about three months later. That amount was reduced a short time later to 5mg Bid because of chest pain and worsening shortness of breath. Three months ago the propranalol was discontinued because of bradycardia and hypotension. At present the Clonidine has been reduced to 0.05mg Bid because of hypotension problems but that amount combined with the Mestinon is not enough to fully restrain my tachycardia or the extreme tremulousness so I am not sure where this is going for me at the moment. Mestinon is generally an add on medication. It is rather short acting and so there would appear to be a need to have another medication along side it to have better tachycardia management. I don't tolerate beta blockers well so substituting a larger dose of propranalol for the clonidine wasn't an option. I suspect MSAC as another diagnosis but that has yet to be determined. In any event until three months ago my supine heart rate ran in the 60s and standing 70s-80s. My labile b/p always remained pretty labile. I honestly do not take my b/p or check my heart rate on a regular basis. Only if something feels different and I am feeling less well then usual so I don't have as specific information as you might like. Best wishes to you in finding a new drug regime that helps. Janet

Hi Lyla and welcome. I did a bit of lurking myself before I finally joined the forum earlier this year. Sounds like you are headed in the right direction in terms of learning more about your condition. That's great that your doctor has a med in mind that may be helpful. How encouraging for you. I am sorry to hear of your struggles though. Janet

Very interesting article. Thanks for posting the link Mighty Mouse. I have a fibro diagnosis and severe thermoregulation problems so I found the information of particular interest. It's great to see some advancements in research and understanding of such a poorly understood and complex condition. Janet

Hi kitt, I'm so glad to hear you were able to get 5 hours of solid sleep night before last (and not have a sweating problem ). That's great. I hope last night was a repeat of the night before and that a pattern of longer sleep times begins to develop. I know besides feeling especially ill from lack of sleep the monotony of what seems like an endless night is truly agonizing. I know 1800mg seems like a lot. I actually tried to reduce it to 1200mg a few months ago but I couldn't deal with the increase in pain and the lack of sleep again. I have been on and off neurontin since 2006/2007 when it was originally prescribed for shingles pain. Since then I have needed it intermittently for neuropathic pain but not in that high of a dose until earlier this year when I developed typical sfn pain ( burning feet etc ). Unbroken sleep was an unexpected and very welcome benefit. I am sorry to say that for me I was not able to obtain the huge improvement in sleep until I reached the 1800mg dosage. It is surprising to me that I am able to tolerate the high dosage I am on considering my intolerance to most medications. At some point I will probably try decreasing the dosage again as I really don't like taking this much medication however for the moment I will just be happy to have some degree of pain control and a solid nights sleep. Kitt I'm glad to hear you usually get a presyncapal warning. It's nice to be able to react at least most of the time and not hurt yourself. As for the other times that must be so frightening. The last time I had a syncapal episode I hit my head really hard on a wall and then the floor. I'm very stubborn, I just continued to ignore warning signs. I don't do that anymore. Lol. I do have to be careful about not making the shower too hot which is hard to do because it feels so good. The arm raising problem is still so weird to me. I seem to be troubled the most with that when I am trying to blow dry my hair which I spend far too much time doing. I am always sitting down for that of course. I have heard the same thing about the effectiveness of medications wearing off. I'm always wondering if that will eventually happen with any of the ones I am on. Oh, there was also one other med I tried for sleep that didn't go over too well. It was called Intermezzo. Not sure if you have ever tried that one. It's supposed to help those that are able to fall asleep but not stay asleep. Here's to a good night. Janet

kitt, My b/p used to range between 90's/50's - 200/110 ( my b/p was described as very labile by Dr. Goodman at Mayo ) but mostly settled somewhere between them so I would never have been considered hypotensive so I'm not sure if now after 2 years the clonidine would be aggravating an overall decreased average b/p or not. I guess I could try reducing it a bit to see. It's all such a balancing act. I take the clonidine at breakfast time and dinner time. I don't believe my present dose is increasing my chronic fatigue though. It was at an increased dose that I noticed that problem (0.15mg bid ). Ironically until recently I was also on propranalol to better control the high end of my b/p but that has since been discontinued. As far as fainting goes I have actually only experienced that about three times. I usually go through a sequence of events before I get to that point so I have fair warning and can sit or lay down before it happens. I can't imagine how challenging it must be when it happens quickly without much time to react. When I stand for too long I do start to experience the coat hanger pain distribution. I assume it's from a decrease in blood perfusion. For myself I don't think there is always a correlation between a low b/p and symptoms as during my ttt I was most symptomatic (extreme dizziness and nausea ) when my b/p peaked at 160/104. I am guessing the high NE levels and the hypertensive episodes might be compensatory. One of my fears is the loss of a compensatory mechanism. I like having it pharmaceutically tempered but not completely eliminated. Funny you should mention sweating as based on recent lab values I am supposed to be in menopause but I do not have the most classic of symptoms. I do not have night sweats in fact I do very little sweating at all and I do not have hot flashes. I have chills a lot and wear lots of layers of clothes and sleep with about 5 blankets and flannel pjs. It's so ridiculous. I over heat easily as well though and then the progression and severity of symptoms advances more quickly. I hope I don't sound like a neurontin pusher but it really has worked wonders for me. It wasn't until I reached a dosage of 1800mg a day that I found success with it in terms of sleep and significant pain reduction. With dosage increases I did notice some drowsiness initially but it resolved pretty quickly. I have been dealing with fatigue issues for years so I can tell with medications if what I am on is increasing what has been an ongoing fatigue problem and what is a medication induced drowsiness side effect. An interesting thing about the neurontin is the calming effect I feel it has on my brain and general system. I think maybe that is why I am now able to sleep. I just hope I don't develop a resistance to it. There would appear to be many subtypes within subtypes and such different responses to medications and various recommended treatments. I'm left wondering what the future holds. I am 5'4" so I guess that is bordering on petite but I wonder if it might be more a weight and less a height association with hyperpots. It really is very hard to keep weight on with all those excess cats on board. I joke about being in a cat fight much of the time. Lol. Let me know how you do with the Neurontin. Yes. I do sleep all night ( 7-8 hours ) and no night sweats. I'm sorry you have to deal with those as well as insomnia. Must be terrible. I hope you have as much success with neurontin as I have. kJay, I can totally relate to the challenges of trying to keep weight on. Please Let me know if you have found anything that helps you in that regard. I'm so glad you have realized some benefit from taking Ambien CR. It's always so nice to find something that helps. I'm sorry you have to deal with night sweats. That in and of itself must be very disruptive to a solid nights sleep. My b/p has always been very labile so probably similiar to yours kJay. Dr. Goodman at Mayo described my b/p as very labile. I hope everyone is having a restful weekend. Janet

I'm so sorry that you are going through this. I know how discouraging and frustrating it can all be. Going from doctor to doctor, trying to get answers and the life you knew back while time slips away. Keep hanging in there. It will be worth it in the end. It took me years to finally end up with doctors that knew about my condition and how to best manage it. Being a part of this forum will afford you with so much support, encouragement and valuable information. Every day is a brand new day and eventually there will be a doctor that can help you. Hopefully it will be this one you will be seeing soon. As Rachel suggested see if you can get on a cancellation list so you can maybe get a sooner follow up apt. Don't give up hope, Janet

Hi Carrie, I'm so sorry you have received this diagnosis. Mine is not a severe case so I am able to manage my gastroparesis through dietary adjustment. The GI doc at Mayo completely discouraged the use of motility drugs unless absolutely necessary. He did recommend a dietary consult. For myself I have found a somewhat greater tolerance for a bit more fiber then fat which I have a very low tolerance for. I try to stay with a modified anti inflammatory, low fat, lowish fiber, as organic as possible, steamed veges, white skinless chicken breast, wild caught fish ( I don't tolerate red meat ), gluten free diet. I eat small frequent meals. I have a blenderized vege/fruit drink daily. Some motility days are better then other days. On bad days I do have to resort to chicken broth and other light fluids. I eat organic plain yogurt daily. I was taking a probiotic but didn't find it helpful. I think I may try a different one though as many people seem to be helped by them. The general GP dietary guidelines help a lot and the rest is really individualized trial and error. Keeping a food diary is very helpful. Unfortunately eating out can be extremely challenging so read the menus really carefully as so many items seem to be heavy on the fat. One thing I have also found to be extremely helpful is to be given Reglan IVP and 1000cc extra IV fluid pre op if I have to be sedated for a procedure. Being given that helps prevent the extreme nausea, vomiting and dizziness that used to hit me shortly after walking up. I hope you are successful in managing your gastroparesis. Janet

kitt, I'm sorry you had such a negative response to Mestinon. I guess I must be fortunate in that it sounds as if most hyperpotsies don't tolerate it or find it to be helpful. As with all of the other potentially helpful medications I think most of them are worth a try unless contraindicated for a particular individual. I think it's definitely worth trying one of the recommended antidepressants so you can find out if it helps or not. I couldn't tolerate the increased jitteriness, insomnia or GI side effects. My hyper situation is pretty extreme as well. I am only taking 0.1mg Clonidine Bid. That was meant to be a starting dose but when I tried to increase it my already problematic fatigue became intolerable so what was intended to be an initial dose (2 years ago now ) was never increased. In spite of maintaining a lowish dosage taking Clonidine has helped tremendously with severe jitterness/tremor. Lately though my very labile b/p has been staying too low for me ( 90's/50's and sometimes 80's/40's ) so I'm not sure what is going on except that I appear to be having more pooling issues and some of the restrained jitteriness is returning. I'm wondering if at this point I may be a candidate for midodrine and/or florinef. I don't want to give up the clonidine. These issues cannot be addressed until after the first of the year however. I am actually able to mostly sleep through the night but only because of taking Neurontin 600mg Tid which was ordered for pain. Prior to taking Neurontin I was up every two hours but I don't think it was pain waking me up. I also sleep with a white noise fan on and ear plugs in which helps. Are you able to sleep through the night kitt ? Thermoregulation is still a huge problem for me. I believe Mestinon helps to a degree but not as much as I would like it to. Lately I'm not sure if the Mestinon is working less or the thermoregulation is getting worse. How are you with body temp regulation ? Thanks kitt. I hope you find a regime that helps you. Alex Thanks so much for the info and links. I hope you are feeling better these days. Oh no I don't mind at all. My profile info is not private. Yes I guess my NE level is kind of high. Right now I'm sure it's lower with the meds on board but it doesn't take much to return to that before med high NE level feeling. Janet