Kellysavedbygrace

I first learned of Mast Cell Activation Syndrome (MCAS) on this site. Following a high NE level on upright tilt at Cleveland Clinic I started to take more interest in reading about this topic. Thank you to all of you who have posted about Mast Cell Activation. One member even PM'd me with the contact information and several references for Dr. Lawrence Afrin in Charleston, S.C. A huge blessing! I took this info back to my primary doc and after a few more months with little progress in my condition we decided to go see Dr. Afrin. Two 8.5 hour road trips and 28 vials of blood later I finally have some insight as to the cause/mechanism of my Dysautonomia. I have had a little bit of improvement with double dose H1 blockers and quad dose H2 blockers. Some of the best relief I've had from brain fog and fatigue thus far. Now I begin a long term process of trial and error with various meds and a more scientific approach to identifying potential triggers. As a side note: Out of about 40 possible symptoms Dr. Afrin asked me about on the first visit I had problems w all but 2 (I have good nails and no sinus problems.). When the blood work came back I had elevated Prostaglandins, Norepinepherine and Neuron Specific Enolase. These results along with reported improvement from the antihistamines confirmed the diagnosis. If you have multiple issues with most of your organ systems you might consider getting tested for MCAS. Thanks again to all my friends here at DINET. What a blessing you are to me!

I use Xanax as needed for the specific purpose of preventing a POTS episode. I think we are all a bit different in how we respond to drugs and Xanax is a good drug to have in your toolkit. Some use it daily but for me I use it rarely in the following situations: - I know I'm about to get anxious/ scared. (fly, IV insertion, dental work, etc) - when I feel my anxiety/stress getting the best of me (rushed, worried, getting ready to leave on a trip, getting ready for one of my kids Bday parties, etc.) In these situations it really helps me get through and prevent the stress of a situation from making me crash. I have not found it to be helpful in reducing tachycardia. I too struggle w low BP and it may have a minor effect on mine- but not enough to note. I have used it once during a crash where I felt my sympathetic nervous system taking over. It did help. Like LC I agree start w a really low dose. I too am sensitive to meds. Too much and I'm catatonic. Remember my first visit to hospital where they gave me a 1.0 dose after my bpm jumped to 140 upon standing. I was catatonic for the next several hrs. A .25 is usually what I take and seem to do fine w it.

Hi Ellen. After a visit to Cleveland Clinic in Feb I started my own similar adaptation to Dr. Levine's program based on recommendations from Cleveland Clinic's Cardiac rehab. At that time I could exercise for between 10-15 mins on a recumb bike IF I was having a "good day.". As I spent most of my days in bed. I returned home to FL and had my doc write a script for cardiac rehab. So I worked out w the heart surgery recovery patients for about 6 wks monitored via EKG and supervised by the nursing staff. I was having some abnormal rhythms but nothing to be concerned about and like you have no problem getting my HR up but struggle to keep it in a good working zone. (140-150). It was common then for the nurses to come over and tell me to slow it down on the rower bc I was getting my HR too high. (this continues to be an issue today) Following discharge I have been working with Amanda, an exercise therapist and former PT. I started all recumbent. Bike, rower, mat for strength and stretch. Like others, I would frequently crash after exercise. In fact, I used to plan on going right to bed following every workout. Over time, however, the amount of recovery needed is overall less and there have even been times when I've had a workout and then ran errands. And, like you, I've been very persistent in making this work bc I know that movement is good. If I feel bad, (unless I'm in a really bad crash) I put on my sunglasses, plug in my headphones, look down, don't make eye contact and make my way to the recumbent bike in the gym and just pedal moderately for 30 mins. I now workout between 3/4 days a week- (tried 5/6 a while back but had to scale back bc it was too much) almost all cardio is still recumbent bc I tend to grey out when I get upright and exercise. On a Good day I workout for an hour- bike for 15, rower for 10, circut strength training on machines with "sit/stands" in between to keep from blacking out. I have to really watch my HR bc anything I do that is "strenuous" (jump, squats w pulley weights/ ropes/ almost anything over my head) and I'll be in the 170s quickly. So for me the balance is not blacking out and keeping a good HR. Amanda will make me walk, slow breathe and sometimes lie down between each circuit to get HR down. She'll mKe me do about 15 sit/stands quickly between circuits to keep from blacking out. It's kinda funny bc I'm the only one in the weight room who is told by the trainer to rest, walk, even lie down. The regulars have come to know me as that person w the weird HR. Exercise has helped me immensely in having the strength to resume a few of my previous activities I an adapted way. Almost everything I do is adapted- from groceries to driving to going to church- some of which I can't do at times even now. I'd say that the exercise has done nothing to improve my symptoms, in fact, at times it makes them worse but I am slowly getting stronger and improving the amount of things I can do. Biggest tip: if you feel like you are pushing yourself- slow down. (I can say this to you but it is very hard for me.). Better to go slow and steady than push it bc when I push it I'm much more likely to crash afterwards. .

Issie, did you or your mom do this? If so, what, if anything did you learn? You probably already answered this in the previous thread but I don't remember.

Great news Kim- so glad to hear!

Thanks Sue for posting. That is Very interesting! I will read the article and Follow. I agree with others above about pressure in jugular vein and head. Never thought of it as a key factor in autonomic dysfunction. Hmmm...

Dizzy- thx for your input. Funny- the nutritional testing I have had done did not show an issue with wheat or gluten but the nutritionist also suggested I try removing gluten bc it helps so many. Hmmm... I will seriously consider. G- Lol! SC- you inspire me to keep going

Chapter 140 in "Primer on the Autonomic Nervous System". 3rd Ed, Robertson, David et al; Nov, 2011 is entitled, "Anesthetic Management in Autonomic Disorders". This is probably one of the most up to date medical texts on the subject. Couple of key points: Anesthesiologists need to understand the ANS before treating pts w ANS disorders Major goal- maintaining cardiac homeostasis 3 major risk factors for pts w autonomic disorder: - vasovagal reflex - unexplained intraoperative hypotension - unexpected cardiac collapse Postoperative hypotension is a concern I bought the kindle version of this book and it has been incredibly helpful as a reference.

So this thinking about low fiber came about as I'm tachying over the sink after squeezing the juice out of my nut bag. Green juicing is a lot of work so I'm wondering like Dizzy mentioned is it worth it? I feel much better when I drink it but it takes so much effort, I'm always tachying doing it - even when seated so I have time to think and analyze. (not to be too gross but want to convey the full idea.) As I dump the fibrous leftover down the disposal it looks like bright green poop. I mean not a little like poop but exactly like it- well, except bright green. And every time I do this (multiple times a week for the last several months) the whole diversion of blood to the digestive track hits me. And a very important fact I failed to mention in my previous post is that I've gone from having 5-9 bowel movements a day (small alternating between constipation and really watery) to 0-2 normal sized BMs a day. Sorry guys- I've been in the fog all day- that is a pretty important fact. Now it is possible that this has to do with my antihistamine increase and not the lack of fiber but I'm not sure. I plan on testing this theory soon just don't want to do it this week- thus the thread. I should also mention that in my Dysautonomia case GI is the least of my concerns. Yes, I have BMs that are way off, I get nauseous often and alternate between constipation and diarrhea - but it is nothing compared to the neuro issues, parasthesias and fatigue that keeps me from functioning like a normal person. Giraffe- I use a Vitamix (whole food processing machine) and a nut bag. The Vitamix liquifies the food and the nut bag strains the fiber. I typically make enough for two 16oz drinks and I put the second one in an airtight container to preserve as many of the nutrients/enzymes as possible. I usually use 2/3 branches of organic kale (minus bitter stem) a big handful of organic parsley, another big handful of organic salad greens (spinach, spring mix or romaine), a whole apple (quartered minus stem) a quarter of a Lemon or lime peeled, a thumb sized piece if Ginger root, a frozen bannana (which helps chill the juice) and some other form of sweet fruit- whatever I have in hand (a handful of grapes, an apricot, pear, etc) and I put in about one and a half cups of organic apple juice. There are you tube videos that talk about juicing using a vitamix. Dizzy, I am with you and concerned that what I'm eating is totally void of nutrition- it is so opposite how I think that it is hard to comprehend me eating this food that is so empty- but, remarkably it does seem to help. And now I'm stuck trying to figure out what to eat. . Today I made tuna fish minus the raw celery and onion that I love. I have an appt w a nutritionist tomorrow to discuss this. I took a food sensitivity test and the Spectracell comprehensive nutritional analysis and found I'm deficient in 8 nutrients and have sensitivities to eggs, non cultured dairy and slightly to sugar. (but gluten/ wheat seemed ok.). So I'll see what she says and go from there. I like your idea of cooking fresh veggies & peeling apples- what other tips do you have for getting fresh food w/o high fiber? No I hate papaya and have only a little pineapple- might try that. Yogi- I'm with you. I think I need protein w every mini meal- just hard to always get low histamine versions of protein when I eat small meals often. Lemme know if you have any tips. SongC- have I ever mentioned how seeing yor pic on here always makes me smile? You seem so happy. Makes me thin I need to get a pic up- but I can't compete w you. Glad the thread helped you figure that out. Thanks all for your input!

Oh by the way here are examples of "low fiber food" that I've eaten this week: White bread, white rice, pasta, chicken, beef, canned soups and veggies, crackers, a little cheese. The only fresh fruits and veggies are a tomato, avocado, a few spinach leaves, cooked onions & garlic and a handful of grapes. This seems so counterintuitive but seems to help.

After green juicing and manually separating the fiber from the juice w a nut bag I realized this is a replication of our digestive function. It takes a lot of work so which makes me tired which led me to think about how much blood my digestive system pulls from my vital organs to process my high fiber meals. For the last year I have tried to eat really well but noticed that I became particularly symptomatic following high fiber meals such as oatmeal and an apple or black beans w brown rice so for the last couple of weeks I've been experimenting w low fiber meals and getting my good nutrition from green juice and supplements. Along w my new antihistamine treatments I've had more good days in the last week and a half than I can remember. Anyone else have success w a low fiber diet?

Don't know if you or you anesthesiologist can get ahold of this medical text (I bought on Kindle) but Chapter 140 of "Primer on the Autonomic Nervous System", "Anesthetic Management in Autonomic Disorders" deals with specific concerns for pts like us in surgical settings. It Points out that the number one goal in surgery is to maintain optimum cardiac homeostasis and says we are at higher risk for hypotension during recovery. I'd consider finding out who your anesthesiologist will be and discussing his experience in working On pts w your condition. This book and/ or consulting preoperatively w an ANS doc at one of the major med centers like CC or Mayo may be of help.

I've had two tilts. I think I was so anxious for a further diagnosis that I didn't mind them at all. The two worst parts: - IV insert - having the docs performing the tests (not my docs- both total strangers who didn't know how much I knew talking to me afterwards. One was condescending and In both cases I left with unanswered questions that were later answered when I reviewed the actual min by min change in vitals.) I blacked out on #1 at about 5 mins with a brief astoyle and greyed out at 9 mins on the next with elevated NE. Both were stopped immediately. Id ask if they can draw your serum catecholemines Supine vs upright on tilt. This is helpful for further diagnosing the subtype if you happen to have the hyperadrenergic form of POTS. I'd suggest being ready to talk w the techs about how younger feeling exactly moment by moment. This helps them assess what is going on and is often recorded in the report. I agree to have help driving home and make sure you get a copy of the results for your files.

I think this discussion thread is interesting and it solidifies the notion that we, as a community, need further clarification of diagnostic criteria. And further education of frontline medical providers on identifying Dysautonomia. Last week I was visiting a friend in the hospital who has OI. As I sat in the room a cardiologist came in and mistakenly told her that POTS had to do with a drop in BP upon standing. Of course I was frustrated to hear as this doc happened to be in the same practice as my cardiologist. So I called my cardio doc to express concern and then forwarded via email the diagnostic criteria for POTS and NCS according to Vandy. BUT according to that criteria I don't have POTS because I also have documented hypotension along w the elevated HR. So I am reluctant to share the Vandy definition with him or any of my other local docs who are not ANS experts because of possible further confusion. So earlier today I was reading a chapter of the text. "A Primer on the Autonomic Nervous System.". This chapter is written by Juilian Stewart. In it he says, "While a diagnosis of POTS specifically includes the signs of upright tachycardia and often circulatory insufficiency, it specifically excludes early Orthostatic hypotension; however progressive hypotension may appear later in the orthostatic challenge.". (Chapter 108; Signs and Symptoms of POTS) All this to say, Yogi is right on about how you deal with Dysautonomia is the same regardless of what you call it but in order for us to be taken seriously by most docs and get insurance to cover our care we need to improve the clarity and education of diagnostic criteria. And, Mytwogirls- how have your symptoms improved or not? As our HRs can be erratic showing an abnormality one day and a more normal presentation the next. If you haven't had a significant improvement in symptoms I too would question the undiagnosis.

I sing and play (guitar and keys) in our praise and worship team at church. I had been doing that for years before my sudden onset Sept 2011. I was unable to go to church for months, much less sing. At that time I tried to sing at home but couldn't simply bc I had so little breath. Almost overnight I went from having a fairly strong voice to not being able to eek out much of a sound. I recall last December asking my ANS doc if he thought I'd ever sing again. I wanted to get back to singing more than anything. I wanted to sing more than I wanted to drive. I was cautiously optimistic when he said he thought I'd eventually get back to singing. In March I started back with the praise and worship team very part time- and at first it was all guitar because I was still only able to eek out a small sound. I gradually added one song sining, then two, etc. Now I'm still part time with the team (but I'm more on than off) as I only go in when I'm feeling up to it but I am singing on most every song. I clearly don't have the chops I had before but I'm able to stay on pitch and harmonize and lead as needed. I do notice my voice has a greater tendency to "crack" but it's not too bad. All that said, I almost always begin to faint at the end of a set and need special aids to help me participate. I have all sorts of countermanuvers and techniques for preventing a faint including the moment the set is done I go in the back and lie down- sometimes for the rest of the service. I pump my ankles, use a stool drink both coffee and Gatorade or water. I grab my stool and do fist pumps and frequently stretch my neck and back. Most people who see me sing would never know there is something wrong but people who know me well know it is a sacrifice. Usually if I sing/ play Sunday morning I will spend the rest of my day in bed but that is okay. I love it and it is one way I can still be an active part of our church body. One side note, I think the exercise program I've been on has really helped. Incidentally that started in March too. It was pitiful exercise on an EkG under nursing supervision at the start- now I work w a trainer, exercise aerobic and strength for 1 hr 3/4 x a wk and I am gradually doing more upright exercise. I know I wouldn't be singing like I am now without that strength building. I hope you return to singing soon. Some of my best songs used to be in the shower. (don't sing in shower any more bc I can't- too symptomatic.)

Issie & Doozy- you two rock. Great info and advice as always. Mast cell degranulation totally makes sense and I would have never though about the metal in the razors. This forum is so helpful for things like this. I'm also so surprised to find so many others with really itchy legs. Thought I was just weird that way.

Oh my- this is something I never even talk about because it seems so small in light of the other biggies. But- so glad to hear I'm not alone. I have really bad itching of my legs too- Dr. Afrin (Mast Cell doc) thinks it is likely related. I have gone to only shaving 2x a week- kinda gross but it is what it is. Sometimes when I am really symptomatic and my hypersensitivity is out of control I can't tolerate the feel of the razor blade on my skin- feels like it is cutting- even though it is not. That is the worst about shaving. I have had success with using an all natural olive oil soap on my legs before shaving. Not like a cream or lotion but it does seem to help. I also do this sitting w a very short, not too hot shower.

Very interesting. Thanks for sharing.

Kitt, Like Issie, I believe the norepinepherine is the key to Dx hyper pots. I had to ask for a serum Catecholemine on the TTT at Cleveland Clinic. They did it just like Hyperpots suggested. At that point my supine NE was just a couple of hundred and I didn't make it upright long enough to get to 10 mins where they like to draw it again. At about 8 mins (when my TTT ended) I was just shy of the 800. Last mo however, during a lab draw for mast cell testing I had a NE of 650+ taken in an almost supine position. I say this to point out that these levels can fluctuate a lot - thus the need often for multiple tests bc you have to catch the effect of the mast cells degranulating/ or NE levels rising. This is why the best place to test for hyper pots is a serum draw on tilt bc it is so controlled. Not sure if that made sense- deep in the fog tonight.

That's a very interesting list. Wouldn't we be in the "rare diseases" category? You amaze me with the data you bring. Very cool.

Blue, I'm sorry to hear about your situation. We don't need financial challenges on top of these medical burdens. It is interesting you are mentioning eating a white diet- I'm trailing a non- fiber diet and along w antihistamines seems to help but you bringup a good point about our bodies becoming dependent. Ginger, I think you've nailed it: peaks and valleys. I hope to get out of this valley soon.

I have same symptoms when it is cold. (although my symptoms are worse in the heat.). Here are my cold temp aides: most you probably already use. - heating pad - lots of heavy blankets - socks - sleep in - good boots - sip hot herbal tea or chicken broth - sit in warm shower then bundle up in heavy Terry cloth robe - lots of layers of clothing - avoid wind (cover my skin if I have to go out)

I just met someone this past week in the hospital who has suspected POTS and extreme fluid retention. She has slowly gained 80 lbs during the last 3 yrs and is concerned like you there might be something more going on. She became very symptomatic when they gave her saline IV (which is opposite of me) so I wonder about hypervolemia and blood dilution. Dr. Jaeger up at Cleveland Clinic would be a good resource as they do blood volume studies. Have heard of people putting on weight but not quite like this.

I just tweeted - my first time since medical leave last Sept.

This makes good sense. Don't think Dysautonomia made the top 18. It is so difficult to build interest and awareness of our condition bc there is so little understanding of it in the general medical community not to mention the public. But, if we all did a little bit, working w docs in our areas to spread the word and sharing out stories with others maybe one day we could be toward the top of that list.