DoozlyGirl

Rich, My autonomic neurologist goes every year to this conference and then presents the "best of the best" at a local patient support group meeting. Last year the meeting was in the US (Florida, if I recall). http://www.americanautonomicsociety.org/ There is very little incentive for large pharma companies to support large scale clincial drug trials for those of us with rare disorders. In recent years, the FDA has given companies with Orphan Drug (market of less then 200K potential patients) status special dispensation (expedited review dates, requirement for fewer patient enrollees, etc.) It's the smaller biotech companies that are interested in these perks. Did you know that it takes 10-15 years to bring a new drug to market, if it even makes it through the clinical trial process at all?

Thanks, Rich. Looks like the responses are pretty close to what I gathered from DINET and mast cell forums.

Go, girl! Hope you come back with solid anwers to this leg of your journey so you may be able to sort out the next chapter! Lyn

Wondering if anyone is willing to share experiences with Dr Castells or Dr Afrin, two of the most recommended MCAD experts on several websites. Has anyone seen both specialists? How much time did each spend with you and how long was the wait for an appointment? Any other details would be much appreciated. Thanks for your responses, Lyn

My autonomic neurologist believes that CFS, Fibromyalgia and autonomic dysfunction are all related (and possibly the same thing) depending on the most prevalent symtoms - 1) fatigue, 2) pain, and 3) cardiac, sweating, GI, etc issues. After having this for a while, I now agree that my labels indicate the severity of my disorder, but not WHY. Numerous times, I have read that mast cells are often responsible for POTS and OH. While degranulated mast cells are likely why I am still ill, I have yet to figure out WHY they degranulate in the first place.

I am curious if there are others with a Non-POTS form of dysautonomia who are looking to mast cells as a major trigger for there symptoms. This is my first poll, so please bear with me....Thanks,Lyn

Thanks for sharing. I am wondering if there is a single spot on the website where these articles could be posted? If it is there, did i miss it? A kind of "In the News" section. We could build up a archive of local, regional and national news stories for patients and physicians to use. In my experience, it is usually easier to convince someone when it is in the paper verses whipping out an old archaic abstract. Thanks for sharing. Keep up the great work, Rachel. Lyn

Haven't been to ER in 27 months. Went in for 200/110 BP, awful headache, blurry vision, flushing. Got saline, and a head CT, and a two day "get out of work" pass. Told to follow up with local PCP. When I mentioned my primary doc was located 90 miles away, I got a lecture how "there are good docs in this town, so find a new one". It didn't seem to matter that I have a complicated medical history, really like my PCP and just recently moved to this new town. This "medical advice" is also in the ED report. Before that, my first experience with anaphylaxis (flushing, syncope, angioadema, severe confusion, hives, tachy and breathing issues) landed me my first and only ambulance ride during a business trip to Scottsdale. Over a hundred of my colleagues watched me from a balcony overlooking the patio where I collapsed. Don't remember much of that event, except "praying that the paramedics not expose too much of my chest to put on the EKG leads". "Please don't rip open my shirt, please don't rip open my shirt." Funny, I thought I was dying, but I was worried about my vanity and having my colleagues see my in full blown hives. And a few years before that exciting business trip, while at a leadership retreat in the middle Maryland (or was it Virginia?), I had 14 syncope events/seizures where I had out of body experiences and couldn't move or talk for up to 5 minutes each time. My colleagues were advised to drive me 60 miles to a DC suburb, where the hosptial had access to a neurologist and a CT scanner. I did get a head CT, EKG (not EEG), xanax and anti seizure meds with my 2 bags of saline. After what I read on this site and the masto site, I pretty much need to top my previous scenarios to even consider a trip to the ED.

jangle, What's the difference in the two levels you mention above?

Congratulations to Stanford for recognizing that the west coast desperately needs a full scale autonomic clinic/laboratory! Dr Jaradeh is well qualified in autonomic disorders, as he trained at Mayo and started up the full scale autonomic laboratory at Froedtert Hospital in Milwaukee, Wisconsin, and chaired the neurology department for years. He diagnosed my autonomic neuropathy. He will do you well.

While researching my illness, I have learned several things which may help sort out the classification issue. The subspecialty of autonomic neurology is relatively new, and so the classification of autonomic disorders has evolved (from what I can tell at least three times) in the past 15 years, as the research drives new theories or identification of new disorders. The thought leaders then have to come together, come to consensus, and agree how to alter the existing classification system. Some classification models break down dysautonomia as POTS, Autonomic Neuroapthy, or variations of autonomic failure (related to many areas). Other classification models are much more involved due to the complexities to having impaired regulation and counter regulation to a host of involuntary functions. Then there are numerous terms to describe the same thing, making it even more confusing. Since the autonomic nervous system is responsible for maintaining the bodies homeostasis by balancing the sympathetic and parasympathetic systems (torquing up verses relaxing) each of the bodies involuntary functions, there are unlimited variables to what can be messed up. Our body chemistry is broken. I call it "Metabolic Fubar". Many of the labels we are given describe the severity of our broken nervous systems, ie how bad we are screwed up (POTS, small fiber neuropathy, large fiber neuroapthy, etc) but not WHY. The trick is to find out which pathways are fractured and why. To understand why, the best tool we have is to figure out our triggers and unravel our symptoms, which can point to a potential cause. I have sudomotor and cardiovascular autonomic neuropathy involving both the sympathetic and parasympathetic fibers. This translates to BP issues and sweating/temperature issues. Something is triggering me to be in sympathetic overdrive. While conventional treatment of cardiovascular (syncope, OI, OH) involvement is to increase blood volume through volume expansion via hydration, salt and other non pharm tricks, the object is to get to get blood back up to the brain to alleviate symptoms. Meds may or may not work depending on what other pathways are broken or the impact of other systems on the nervous system. The autonomic nervous system intersects with the neuroendocrine and immune systems, as our symptoms often include issues with hormones and inflammation, adding even more variables. Mast cell disorders, Lyme's, viruses, autoimmune disorders, genetic disorders, tumors, chemicals, medications, diabetes, etc can all disrupt the normal pathways that allow our bodies to function. I hope that chronic illness will one day be recognized and categorized differently, which will lead to better diagnosis and treatments that focus on the causes/WHY and not only the symptoms.

Congratulations Katie! You have certainly found a thorough physician. Hoping the Rheumy will concur. Keep us posted and best wishes, Lyn

I agree about about the switch being flipped. I've been saying that for years. Something similar to narcolepsy, but different. Regarding insulin, I have spent the past 6 months chasing my unstable blood sugars. My insulin levels are elevated, but my sugars haven't dropped below 60, so I don't have absolute hypoglycemia. I do have reactive hypoglycemia triggered by food ingestion. My autonomic neuro feels my orthostatic BP is causing my sugars to plummet. Even though I have tested negative for gluten AB several times, I know I feel better with limited gluten but don't do well gluten free. Will pay attention to gluten again, especially now that I am looking at mast cells as a trigger and am connecting my flushing with GI symtoms and BP drops. Thanks for the responses. They really help me look at my situation with other perspectives. Lyn

lemons, I have been reading about medications that trigger mast cell activation from multiple websites and betablockers are known to triggger for mast cell degranulation. I guess this could explain why everytime I have tried a betablocker, I get weird symptoms. I am looking for a reference for you and when I googled betablockers and mast cell activation, a page from Dinet on causes of POTS lists mast cells. Go to the last line, there is a reference to an article. Have been going thorugh my current and past medications looking for mast cell triggers, 1) looking at class of meds -- betablockers, NSAIDS, antibiotics, anesthestic drugs, narcotics, 2) looking at inactive ingredients, such as my allergens --lactose, corn starch, FD&C red and yellow dyes are known to trigger urticaria and flushing. I am now converting my OTC meds to ones that do don't contain my allergens/triggers ie converting peach/yellow/red colored OTC meds to white ones, trying to eliminate lactose and corn starch if possible. Trying to lower my trigger threshold so I react less. Best wishes, Lyn

Thanks everybody for your responses. Does the onset of these forced sleep episodes feel as if you are getting IV sedation prior to surgery or do you have a different way of describing them? Do you know if it takes awhile before you are out cold or do you go directly into deep sleep? Naomi, I used to be able to override these sensations, but after 5 years they now are too strong for me to overcome. heissovereign, no worries, no one will be offended by your symptoms. Most of us have personally faced the very things you are describing. While your jump in standing HR definitely points to POTS (>30 beats), but wondering what your BP is doing at this time. Do you take your vitals while laying, sitting and standing, to get a rough idea of your orthostatic tolerance? Do you own a home BP machine? If you need some help in how to properly take othostatic BP/HR, just let me know and I'll walk you through it. Just the other day I posted something on this very topic. I found that once I documented my screwy positional BP/HR and then a RN documented the same thing, my autonomic testing was expedited leading to a quick diagnosis 4 weeks aftrer I figured out my orthostatic hypotension was my major culprit. When my HR gets really low or after my BP plummets, I will lay with my legs up on the back of the sofa, on a chair, or up a wall, which will get the blood back to my brain. I often feel better and can even raise my HR a bit. Keep reading the posts and ask questions when you have them. Everyone on here is so supportive. Katy, if full meals prompt these sleep episodes, have you tried splitting your meals into smaller ones? I changed my eating this poast summer and have had fewer sleep events since then. And now that you mention it, I ate more than I usualy do the other day just before my last sleep episode. Hmmmmmmm.... Still get them in the morning though. Keep pushing on, Lyn

heissovereign, I see you are new to this board. Welcome. I have learned so much from this forum, which guides me in my quest for health. I am wondering if you have food, medication or environmental allergies or sensitivities. I am trying to figure out if this forced sleep thing is related to my BP issues or possibly mast cell related, so I can attempt to find a doc who may help me understand and treat this debilitative symptom. I have figured out how to manage so many of my other issues, but this one has me and my team of physicians stumped! Best wishes in managing your symptoms, Lyn

Hey Bren and lemons, My episodes come on so quickly, no time for a bath. I do have more warning than when I've actually passed out, but in those cases I was alert, but groggy within a minute or so. During these episodes, my sitting BP is really high, so I don't pass out like in the past. I have minutes to get into a comfortable position on the couch, recliner or bed. I am most concerned about the really slow HR. Lived with a resting HR in the 40 's for 6 weeks after trying a beta blocker two years ago. My resting HR went from 120's to 40's after 1/4th of a betablocker for 5 days. Another reason to suspect mast cells. I too have tried to fight it, and then am far worse off then surrendering and taking that forced nap. Will see if a zantac and zyrtec helps at all. Thanks, Lyn I don't have POTS, but have documented my systolic BP dropping 78 beats within a minute or so.

Hi all, I see many of us have been looking at mast cells as a possible trigger for our screwed up autonomic nervous systems. I've had prominent food and medication sensitivities and random episodes of anaphylaxis years ago(requiring epi/ambulance ride, etc), but these issues have resurfaced. Once I looked up the clinical definition of anaphylaxis, I realized that all it takes is one skin reaction(like flushing, hives, itching) and a second organ system involved, ie GI (vomiting, big "D", abdominal pain) or cardiovascular involvement (like orthostatic hypotension or even hypertension), and then angioadema and swelling are listed. This is making me reevaluate my current episodes. I am nearly continually flushing, with near daily episodes of GI evacuation, so been adding antihistamines and can see a difference. I see my autonomic neuro in a few weeks. and my derm two weeks later. Here is my big question for today. Has anyone experienced forced sleep, where it feels like you have been given sedation? I still can't place this one major symtoms. Is it mast cell related or OH related, or something else? Today, I had lunch with a friend in a local mexican restaurant that uses only fresh ingredients. BTW, I've never reacted to fresh mexican food. The 2 hour lunch went well. I then came home then felt doozly, which is our family word for I HAD to go lie down. By that time I had chills, the inner core type, blurry vision, then my eyes got really heavy, where I couldn't keep them up any longer. It feels like I am getting sedation, then I am out cold for several hours. I heard the phone ring twice, but I am unable to come to. I awoke 3 1/2 hours later, somewhat refreshed and feeling fine. Sometimes I get these episodes right after I wake in the morning and have to go back to bed for several hours. I've have had these episodes for five years, and had to work later in the day to cover the time off of work. Haven't been able to work in 2 years . The only trigger I can possibly come up with today is perfume from woman in next booth, but I get these same episodes without exposure to perfume. Can anyone relate to this experience and have you figured out what triggers them? Thanks for your responses. Lyn

s-pot, As I was reading your post, I recalled my long journey before getting my diagnosis of orthostatic hypotension and autonomic neuropathy. For years, I knew I felt better while laying, but I couldn't really describe why. Once I figured out my HR would jump around signifiantly while exercising, I bought a HR monitor and keptt bringing my logs to my PCP's appointments. When I later suspected that my BP was an issue, I did the same thing with a BP monitor. It wasn't until I began to take my orthostatic BP readings multiple times a day that gained the interest of my new endo. I see you are getting your referral, but documented abnormal values may get you in sooner. I got in within two weeks of my referral, due to the big drop in my BP upon standing. I would take my BP while laying flat on my back, before sitting up in the morning. Then I would sit on the end of the bed and within a minute or so, take my BP with my arm at the same height as my heart and feet on the floor. I would then stand, and lean my arm on a tall boy dresser and take my BP again. I would take it every minute or so for about 10 minutes. Orthostatic hypotension can happen within 10 minutes of standing. These values prompted my TTT and full autonomic testing, and I failed every test, propelling me into the dysautonomia world. Good luck getting your TTT. Lyn

Should have checked out the link above for DYNA before I asked my question. It brings up a nice article on Greg Page on the DYNA kids website.

Anyone familiar with the group he works with DYNA? I found this name mentioned in several websites. From Greg Page's Wikipedia page: Illness and retirement On 30 November 2006, The Wiggles announced that Greg Page would leave the group due to poor health.[2] Page had experienced health difficulties since December 2005, when he underwent a double hernia operation and withdrew from his group's U.S. tour after suffering repeated fainting spells, slurred speech, fatigue, and trembling.[3][4] Although Page was missing for virtually all of the late 2006 U.S. tour, audiences were informed of Page's absence at concerts moments before the curtain went up.[5] At first, Page was told that he had seven years to live,[4] but he was diagnosed with a non-life-threatening and difficult to diagnose chronic illness called orthostatic intolerance or dysautonomia, which causes symptoms such as fatigue and loss of balance. Specialists believed that Page had mild episodes of the illness going back twelve years, and that his symptoms worsened after his hernias. It was decided that Page would retire from performing with The Wiggles to better manage his health.[2] In the months following the announcement of Page's retirement, he received an "overwhelming outpouring of public support". He reported that it took his parents six months to respond to the "mountains of letters, emails and sympathy notes".[4] It was reported that as part owner of The Wiggles, Page was given a $20 million payout.[6] Page was succeeded by Sam Moran as a full member of the group.[2] [edit] Post-Wiggles By late 2009, Page had recovered enough from his illness to begin touring with another country rock band, but with a more limited schedule than The Wiggles. He had also started his own foundation, the Greg Page Fund, to raise funds and educate the public about orthostatic intolerance.[7] In addition, he is a supporter of, and spokesperson for, the Dysautonomia Youth Network of America (DYNA).

Hi all. Just starting to connect my outlying autonomic issues to probable mast cell related issues, and ran across this American Heart Association article from 2005, that I thought was worth sharing. HPOTS and MCAD: http://hyper.ahajournals.org/content/45/3/385.short . I learn so much from this forum. Lyn

My highest BP on record is 210/100 in the ED, with crushing headache, major flushing and chest pain. ED didn't know what to do with me, within a few hours, I was back down to normal, then discharged. This was several months prior to diagnosis of autonomic neuropathy and orthostatic hypotension. Since then 175/110 is the highest I've recorded at home.

I am so sorry for your family's loss. Long car rides are usually tough on me too. I find that Aveda comfort tea (buy at any Aveda salon, see my comments at recent nausea post) with peppermint and licorice root works well for nausea. It tastes good at room temp, warm or cold, so I usually make up some before leaving and carry in water bottles. I also carry small V-8 juice and salty crackers or pita chips and nuts for protein. And I tend to ride with the seat way back, which helps. Best wishes, Lyn

I have a significant family history of aneurysm. My mom and her sister both have had aneurysms, and their father, a brother and another sister all died unexpectedly. There is now significant suspicion they had aneurysms as well. My mom has two different types of aneurysms (aorta and coronary), which is quite rare, from what her surgeon explained. Her sister has 2 aneurysms in the brain. Have since learned of at least 10 other relatives on my mom's side with aneurysms. We were strongly advised to have all first degree relatives screened with X rays/ultrasound, which do a decent job of detecting aortic aneurysms, then repreated every 5 years. My mom's initial blood work for a connective tissue disorder were negative and we were told genetic testing would likely not be covered by insurance and cost upwards of $10k. No hypermobility or Marfan's in the family, but aneurysms galore.