Kellysavedbygrace

Don't know why I have an emotion icon there but it should say, "B."

Rich, nice work on this theory. I do believe that it will be Dysautonomia patients that eventually unravel the mystery behind our complex and highly variable cases. I do hope, like Jangle, you are making your way to medical school. I'd like to come see you too once you begin accepting new patients. I have been thinking about your post for a couple of days now and have a few questions. As you answer, keep in mind that like you, I have no medical background and am a patient who has studied this for the past year and a half so I can help myself improve in my day to day functioning. I tend to know a lot about the ANS, mast cell hematology and cardiac, vascular, neurological and repiratory effects but am lacking in understanding of the whole picture. 1. You mention this is "theory #3,". What were theories # 1 and 2? Or were they infantile versions of this same theory? 2. So help me clarify your theory. This is my interpretation of what you've said. Please fill in any gaps or correct any wrongs: ------- Dysautonomia may have many different causes (autoimmune, mast cell, viral, etc) but in a majority of the cases, where the real problem is an ANS issue and not simply mimicking autonomic dysfunction, the common mechanism behind Dysautonomia is a dysmyelination of the Group B fibers and/or a dysfunction of the group C fibers. Furthermore this means that for most of us Dysautonomia is degenerative (unless we find a way to regenerate the myelin sheath of our preganglionic fibers that have been damaged or a way to correct the non-myelinated post ganglionic fibers that are improperly functioning.) 3. I think I understand what you mean about dysmyelination of group B fibers but I am unclear on what you suspect is happening with the unmyelinated post ganglionic fibers. 4. In your theory do some of us have problems with group B fibers only, group C fibers only and/or a combination of group B and C fibers? (you alluded to this but I was unclear) 5. Since there are exceptions to the mostly myelinated preganglionic fibers (in group such as the preganglionic fibers that connect to the adrenal medulla where the preganglionic fibers are not myelinated how does this theory apply? Or not apply? 6. What is the source of your stated percentages of efficacy of nerve conduction studies, QSART testing and SFN biopsies? And to clarify is 88% efficacy of SNF biopsies the higher level skin biopsy testing Group C or more traditional SFN biopsy testing group B? (interestingly while at Vanderbilt in January Dr. Biaggioni said that approx 30% of the POTS patients they see test positive on QSART for SFN. Although anedotal in nature this is different than your stateed 50%.) At that time I was surprised it was so low. But furthermore, I was surprised during all three nerve tests I've had done (an EMG done locally, and two QSARTS - Cleveland Clinic and Vanderbilt) that they all came back normal. I've wondered, "How can that be when I have such difficulty with parasthesias, Allodynia, and frequent loss of feeling/ blood flow in my arms and legs?". This theory might begin to explain it. 7. Is the primary role of the CNS in this theory that of releasing various chemical mediators that effect the PNS? Or do you suspect there significant dysmyelination and dysfunction occurring in the brain stem and spinal cord as well? 8. How do you suspect this dysmyelination affects something symptomatic like erratic hemodynamics? Or is that for studies on down the line? Cheers! KSBG

At first when I read this I thought, "you've got to be kidding.". But then second thought is, "Good for you Rama! Keep trying new things and testing them.". Would love to hear your follow up report on this.

I have MCAS, POTS and NMS. I was not sensitive to chemicals before onset but have become extremely sensitive to the point that I can't have chemicals used on the other side of the house with multiple doors closed. About a month ago I switched to all natural cleaning products except laundry soap and w that I use sensitive skin (free of dyes). I use vinegar, lemons, olive oil and baking powder for all indoor cleaning. It is actually cheaper than buying cleaning products and works well. Btw- sometimes I will have an immediate reaction and sometimes it is delayed. Like Naomi I am symptomatic when exposed to any environmental fragrances or chemicals, bug spray, hair coloring, candles, etc.

Yes. Sounds very common for autonomic dysfunction. Erratic BP and HR are classic signs of this. All of the symptoms you mention including the pain in the left jaw are symptoms I experience regularly. I am sorry. What you are experiencing is so hard to make sense of and it is easy to think, "I'm gonna die" Because that is what it often feels like. During these times I often tell myself, "It's going to be ok. This is just Dysautonomia. I need to lie down and eventually this will pass.". I tend to be on the low BP side instead of high, but have had several disconcerting episodes where I have High BPs like you mentioned. The real test is, does your HR come down when you lie down. If it is POTS the HR should come back to baseline, or at least close, when supine.

Sitting In a chair is an Orthostatic position and will effect anyone who has Orthostatic intolerance. At Cleveland Clinic durning Hemodynamic ltesting I pooled 37% of my total blood volume in my legs upon sitting upright. This created a 42% reduction in cardiac output yet had no significant change in blood pressure. At Vanderbilt during autonomic testing the Postural and medicine studies they conducted allows the patient to sit upright for a significant portion of the study as sitting up is considered an upright position. (after 2 hrs my BP dropped consistently to 80/50) Personally I've found that I can usually sit upright for no more than 45 mins without becoming symptomatic. So when planning for visiting with friends or going places I keep this in mind. It might be helpful to measure this for your son. Hope this finds you and your son in a good moment. God Bless.

The blade is actually different in the dry container. The angle puts less strain on the motor when grinding dense materials such as grain. Probably don't need the dry container unless you are milling grain of some sort. I suppose if you want to make rice flour it would be good but the almonds would be better on the regular container. We did not buy the warranty and have not needed any service. Once we did have to replace the tamper bc I accidentally started it with the lip under the cover instead of on top. User error. We just ordered another. Everyone I know who has a Vitamix recommends it to others. Feel free to PM me at any time if you have questions.

Yeah! That's a great tryptase level. Still possible MCAS but good to rule out something like MCL.

I LOVE my Vitamix and use it almost every day since 2004. It is so powerful it liquifies even strawberry seeds. (we bought a refurbished professional series machine for about $300 (normally in $500 range) don't know if that is the one you are considering but if so I'd highly recommend. To green juice and remove the fiber I use a nut milk bag to strain the fiber. It is easy and you can buy. Nut bag through amazon for $4. Last summer I also bought the Breville juicer mentioned above and compared the two. There were advantages and disadvantages to both. Breville doesn't require pressing the juice through the nut milk bag and does not require the addition of a liquid (I use a little organic apple juice) but it took longer to process the juice, using a spinning motion that exposes the food to the air allowing more oxidation and was about 10x harder to clean. I also have the dry container that allows me to mill my own grains, like wheat, for making fresh bread. I did this for several years and it is a wonderful improvement in health because the wheat berry, when freshly milled, provides complete balanced nutrition through the fats and proteins in the wheat germ and bran. Unlike it's distant cousin flour, which has had the germ and bran removed and other vitamins added as "enrichment.". If you are interested in more on freshly milled wheat PM me. Here are the most common things I make in my Vitamix: - green juice, strained (usually kale, celery, cuke, romaine, Ginger, asparagus or pea pods w a little organic apple juice) - smoothies- either strawberry/ banana for the kids or peanut butter chocolate for my hubby. (Smoothies are too sweet for me now) - freshly milled wheat pancake or waffle batter - soups- either par cooked or raw - frozen treats- strawberries and Greek vanilla yogurt make a great dessert for company

You probably know this, there is no one fits all treatment for MCAD. Many do experience some improvement with antihistamine drugs but some can't tolerate them. Some experience improvement with aspirin therapy, and some (like me) can't tolerate it. The pharmacological treatment protocol for MCAS is essentially a long list of meds (mostly mast cell blocking agents) that require a long term process of trial and error. I'm hopeful that over the next few years I will be able to experience more significant improvement. In addition to my Dysautonomia drugs I added high dose antihistamines and had about a 10% improvement. For me, that is good bc other than IV saline therapy I have had no drug thus far give me that much improvement. Since then I've added Adderall which is a strong vaso constrictor and stimulates circulation as well as energy. Ive experienced about a 25% improvement but only on good days- when my body absorbs it. (about 50% of the time.) My job now is to be like a scientist. To create hypotheses and carefully test them one at a time. I suspect I'm looking at a very long term process.

It is likely this is associated with POTS but a sure way to tell is to lie down. (even on the floor of the stairway landing if you have to). If the pain goes away, it is posture related and is a non- life threatening symptom. If, however the symptom does not go away you should go see a doctor about it. I actually had a sharp chest pain this past weekend while doing some work in my house. I laid down and it went away. When I stood up it returned. Definitely POTS related.

There are a number of well known autonomic docs that participated in various studies at NASA. (Ben Levine, UT Southwester; Fred Jaeger, Cleveland Clinic; Italio Biaggioni, Vanderbilt, etc) Not sure which ones but I can't imagine much of a connection to your case. It is likely is that you were diagnosed much quicker than the average person because of your knowledge of autonomic dysfunction through your studies.

I was diagnosed by Dr. Afrin at MUSC in Charleston. He was recommended to me by ChristyD, another member on this forum. I am so thankful for his work in MCAD. Also, as a side note, my youngest son had severe sensory integration disorder from 0-3. So I suspect the more extreme sensory issues run in my family.

Oh sweet, I'm so sorry to read. I just want to encourage you that you are not alone in dealing with this loneliness even though it feels like it. I struggle with this so much too, as many here do. The thing is with our condition very few people really understand what we are going through- even sometimes our closest family members and most doctors who specialize in autonomic dysfunction don't really "get it.". I think unless you have this, you can't really understand. For me the hardest moments are the times I find myself in a crash after I've had a good day or two. Or if Ive just been with friends/family and Ive pushed myself to go do something and it makes me so sick that it hurts all over and I realize being social makes me so sick. Then I find myself in this deep pit of despair realizing once again that I'm back in prison. I usually cry for a while in bed where no one sees me and letting myself cry helps. (It actually activates the parasympathetic system.). But, I never let myself stay there too long. Here are some things I do that really help me: When I'm strong enough: - find comfort in my faith (for me this is reading the bible, listening to praise music and talking with God) - focus my energy on the needs of others. (I have one old lady friend who goes to our church. She has ALS and has lost the ability to speak so I text her regularly. I can relate with her so much because I've lost my ability to cognitively function like I used to and she has lost the ability to speak. The difference is she is facing death and I am facing life, life in this temporary prison. Anyway, I encourage her and she encourages me.) - invite friends over for one on one time by the fire w a hot cocoa/tea. - talk online w my new friends, like here on DINET - read and research about my condition so I can better understand and fight When I'm too weak: - cry - remind myself that I can make it through this moment. (maybe not the next, but this one I can) - watch Netflix to take my mind off it - read a fun magazine - window shop online. I wish I could say I look forward to the day when we are both better and can live life the way we used to But the truth is we don't know what the future brings. So in the meantime we try and live life to it's fullest while in bed or while struggling w these trials. And I trust that this suffering will somehow help me to be a blessing. I'm glad you shared how you are feeling. It reminds me that I am not alone in this battle.

I imagine many of us have been worked up for stroke at one time or another bc of our symptoms- I know I have twice. In the literature I don't recall seeing anything about a connection between Dysautonomia and stroke. That's not to say the possibility doesn't exist bit I just don't recall reading anything about it. Certainly, however, there is some degree of cerebral hypo perfusion going on in many of us. You might consider discussing your family history and concern w your favorite neurologist.

Seriously? Unless there is a really good reason that this immunologist gave beyond what you've stated above (such as a bone marrow biopsy of stained proliferative mast cells, or severe organopathy of your liver, spleen, etc) you need to fire this doctor and find someone else to help you. I am so sorry to read this. You should not have been treated this way and I hope all the comments above will help to realize that this weak connection to MCL is demonstrative of this immunologist's ignorance. I do have MCAS and have studied the various mast cell disorders from the perspective of a patient. There are many forms of systemic mast cell disease and the most common is Mast Cell Activation Syndrome (MCAS.). This is where the mast cells are mutated and degranulate improperly (either spontaneously or when triggered by something). MCAS is not well known yet as most immunologist still only recognize Systemic Mastocytosis (SM) as defined by the World Health Organization (WHO). Research is currently underway to better diagnose and eventually treat and educate physicians about MCAS. SM is the most well known form of systemic mast cell disease. It is often diagnosed using the WHO criteria which includes a bone marrow biopsy demonstrating the proliferation of Mast Cells in the marrow and elevated tryptase levels among other biomarkers. SM is subdivided into 3 categories (Indolent, Smoldering and Aggressive). The vast majority have Indolent SM which is considered a benign hematologic condition. In some cases the condition can develop carcinoid features which then is suspicious for the more malignant forms of SM which are usually associated with some degree of organ failure (liver, spleen, etc). In less than 1% of all Systemic Mast Cell Disease patients MCL is found. Many times this is discovered during the autopsy because this form is so aggressive. It mostly develops independent of SM or other forms of Lukemia but can in some cases evolve from aggressive SM or Non- mast cell Lukemia. Normal total tryptase is about 6 micro g/l. In MCL cases tryptase levels are found to be elevated to be in the multiple hundreds. (meaning the mutated mast cells are taking over the bone marrow.). Systemic Mast Cell Disease is rare. But MCL is very, very rare. Why your doc would even mention this without an elevated tryptase level is beyond me. If I were in your shoes, I would call or fax a question back to this doc about why they suspect MCL. If they do not give you more than the flushing, GI issues and reaction to morphine then you might want to change docs. Yes, of course, get your tryptase level checked but my bet ( just an educated guess from another patient) is unless you are experiencing liver failure or an enlarged spleen that you are not telling us about you are not dying anytime soon. Again, so sorry this happened. Keep us posted on what you find.

I am so sorry to hear. It doesn't seem right that you should now have to deal with Breast cancer but I imagine your experience w Dysautonomia will help you so much in navigating this road. Do you know what stage? As AG said most treatment outcomes are hard, but successful. I will pray for God's comfort and peace upon you. Please keep us up to date on your progress.

I'm right there with you. And I've found it interesting that my response varies depending on how symptomatic I am. Some days I can handle touch but others I cannot. On bad days: - the wind feels like a million pricks of needles on my face and skin - a paper in my hand feels like a razor blade - an unexpected touch by someone else not only startles me badly but makes me feel like the cartoon cat with his hair standing on end. - I bruise very easily but usually get it in smaller areas where I have been touched - I cannot shave my legs because it feels like I'm cutting the skin - I get body aches that make me hurt all over but normally they are more on the inside not the outside.

I have wondered why you are such a proponent of licorice. I have tried it in many forms, tea, dry root herb, and of course candy. I have not noticed any immediate improvements or downsides like you have and wonder have I just been missing them? The clinical evidence you shared makes me want to analyze more specifically. I have elevated Prostaglandin D2 and cannot tolerate aspirin so to learn that licorice might help is very interesting. Good thing I like the taste of it. Sounds like you prefer the tea. (and you may have answered this in a previous post but....) which forms/brands do you observe the most benefit? Is the candy even helpful? Also, you said you get "immediate relief of all your POTS symptoms"- what does that mean? Which symptoms?

Great topic and it hits home w me as I am about midway through an exercise holiday after someone online suggested my "crashing sounded like Post Exertional Malaise.". So the hypothesis I'm testing is, does the exercise hurt? This will be proven if my crashing, as measured by my symptom tracker improves showing any significant improvement over 50%. I've been planning a post to discuss how helpful it has been to exercise. A year ago I couldn't drive, couldn't go to the grocery store, go to church, etc. Now I am 50% functional and am measuring everything as scientifically as possible. I attribute my improvement in functioning in part to the meds and diet, but even more so to the exercise. So I'm in quite a quandary should I have significant improvement. Will post this thread soon. Went from homebound and barely able to exercise to hour long strenuous aerobic and upright circuit training 3-4x a week. Took almost a year to get that improvement. As for tachy- it has made little to no difference. Although I always exercise w a HR monitor as my HR escalates as much as 80bpm within 15 seconds of a new exercise. So I monitor closely to make sure it is down significantly before the next rep. As a side note it is interesting that my HR is typically higher just walking into the gym from the garage than it is at the end of my warm up. Funny. Jangle, you'll make a great doc.

At Cleveland Clinic they recommended I try Mestinon instead of Midodrine. (I couldn't tolerate it.) You may want to try a Midodrine break and try Mestinon in it's place for a while. Our bodies easily adapt and switching meds ina similar class can be helpful for giving your body a break. Btw- you may already know but Mestinon (Pyridostigmine) is a cholinesterase inhibitor so it blocks the enzyme that is a catalyst for acytecholine, a key player in neurotransmission. Used mostly in myasthenia Gravis patients. It does help maintain BP without elevating it in a supine position.

Hi Sonya. I live in FL too and travel each summer to Idaho, to visit my hubby's family. Prior to dysautonomia I had severe anxiety issues with flying so the idea last summer of flying and then going to McCall, ID which is similar in altitude to Jackson Hole was absolutely terrifying. But, I'm not one to give up so here's what I did and it really helped: - packed and was ready to go a full day early so I had rest before flying. - took an afternoon flight and got 2 ltrs of saline IV before going - arranged special bulkhead seating due to medical necessity - spoke with the head flight attendant of each flight before taking off. (said I had a rare fainting and heart condition, want them to be aware but not alarmed if I faint or need extra help and extra water. If faint, just need to lie down. It's ok to faint upright for a few mins while flying- not life threatening. The key is that they knew a bit about me and therefore checked periodically to see if I was ok. By the way, I did not faint but did have some high tachy moments. Don't think it ever dipped below 100 in flight.) - took full dose of Xanax - arranged saline IV on the other side. Spoke in advance with nurses at McCall hospital and had the IV therapy pre authorized. (that saves a lot of $ and stress over going through ER. Told them I might not use it, but I did 3 times during 10 day stay.) - planned nothing first full day after arrival. As for altitude, I did have more shortness of breath. And I spent at least half of the time in bed- but that is normal for me. Maybe a bit more fatigued. I did green juice while there which helps me. Also, I arranged a couple of massages which were nice and helped me stimulate my parasympathetic system. You may be in a very different situation so I'm not sure you'd have the same needs. I can't imagine skiing as I get symptomatic in 30 seconds of standing and blackout mostly before 10 mins- but if I thought I could I would go for it. Sounds super fun! And if you are well enough to consider it, I bet you can do it. Maybe plan ways to do counter maneuvers if you get tachy and plan rests in between runs where you can take off your skis and elevate your legs. Might want extra help getting on and off chair lifts. Eehh gads - ok im not so sure about the chair lift. Have you skiied before? If so, maybe you'll be ok bc you know what to expect. Oh well. What's the worse that can happen? You'd fall down like all the other Floridians. Oh, btw- I think POTS cured me of the anxiety issues and flying. I think I was having control issues before and since all year I haven't been "in control" and have felt so close to death so many times I had not a single issue w anxiety. Cool huh?

I'm with you all in having med reactions and have a growing wide assortment of chemical issues. As time goes on I'm learning to identify the warning signs. In fact just today the bug man came and sprayed for ants and roaches. (we live in a tropical region of FL so this is very common.). Last month when he sprayed I noticed that evening I crashed so I thought this time I'd really pay attention to what happens following his spray. Literally within moments of him spraying the room I noticed the faintest taste of chemical in my mouth. Within 10 mins I was lying flat on my back and had the icy spider tingling/ crawling feeling up my neck, through my head, down my shoulders, arms and legs. I felt faint and knew I had to leave. I left the house, went out with my sister to a small cafe for lunch and after a few hours away feel much better. I'm now back home lying down in bed but have the windows open and there is a good breeze. I'm quite sure had I stayed with the windows closed I would be a wreck right now. I'm not sure how long this chemical has been affecting me, and although I've suspected it to be a problem it isn't until today that I know with confidence we can no longer have this chemical sprayed. I'm quite sure my reaction is a mast cell activation issue. I have had loads of problems with meds. Some I've had immediate reactions to and some have been delayed reactions. Here is a list of drugs I've tried and can't tolerate: Metropolol Nadolol Propranolol Immitrex Fludrocortisone Prednisone Aspirin (a baby aspirin will put me in bed with SoB for 2 days). Even get reactions at 10 mg. Where I get this chemical burn feeling in my bloodstream. Any NASID in a moderate or high dose- can sometimes tolerate a half dose. Midodrine Cymbalta I am able to take the following and have some improvement with these. Also I just want to encourage you to keep trying, and like Izzy said, you might want to try adjusting the dose. We are each different and It is worth it to keep testing. Adderall Loratidine Famotidine Pyridostigmine Clonazepam Lo Loestrin FE (BCP to limit anemia)

It is really helpful to see one of these docs who sit on the TMS medical advisory board. I can second the recommendations of Dr. Castells and Dr. Afrin. And it is worth traveling to see them. I've been seeing Dr. Afrin since October but had hoped to find a local hematologist to help. I found the top doc in the Tampa Bay area for SM. He is the medical director of the clinical research programs at USF. He is a top hematologist/oncologist at Moffitt Cancer center and sees more SM patients than anyone in the Bay area. My hope was to have him consult with Dr. Afrin and get treatment without driving 9 hrs to see Dr. A every few months. He was wonderful, knowledgeable and honest. He knew of Dr. Afrin and others studying MCAS and found my case very interesting especially the degree to which I am sensitive to drugs and chemicals. It appeared I am a lot more sick than most of his SM patients. He has no patients with Dysautonomia and has had no patients diagnosed with MCAS. He said, "I would be happy to treat you but if I were you, I'd drive to Charleston every few months to see Dr. Afrin." I share this just to say that if you really suspect MCAS it is important to be willing to travel to see docs who have experience in diagnosing and treating MCAS.

As I read this thread I am simply amazed at the knowledge many of you have about immunology. I am so thankful for the wisdom gained on this site. Regarding Mast Cell issues a couple of thoughts come to my mind. - Kris, you mention they found mast cells in your colon. Did they find a "proliferation" of mast cells in your colon, meaning more than the normal amount? Because we have mast cells located throughout the body in all the connective tissues and they are found in greater numbers in areas of the body such as the GI tract, eyelids, mouth, etc. (any area that comes into contact w the environment.) In the study of MCAS Dr. Afrin and other docs have found proliferations of the Mast cells in the GI tract instead of the bone marrow. This was really one of the keys to convincing the "old school" thinkers that a systemic mast cell condition outside of Systemic Mastocytosis or Mast Cell Lukemia actually exists. And, there are lab tests now that can prove MCAS but it is hard to get them done by docs who are not currently studying MCAS simply because they lose their metabolites so quickly that if not drawn and handled properly you will get innacurrate readings. And those that mentioned it above are absolutely right. Your doc contradicts herself when saying she doesn't think it is a mast cell issue when suggesting you eliminate the Noxema and NASIDS. As a side note, I react strongly to both of those and many chemicals. As far as your husband, I know it is so hard. I think we should have a special forum for spouses and caregivers. One of the most helpful things for me was having my husband go with me to see Dr. Thompson. He talked w my hubby, Nate, about his role in helping to care for me and the need for him to recognize this is very real and it will require his patience. Do you have a doc that might be able to help him understand his role in this journey? Something about hearing it from a doctor really seems to help. God bless.