juliegee

Ooooh Anna, A little light reading- yay! Seriously, looks very informative- THANK YOU. I will take my time to absorb. I find this whole thread very interesting. All of your posts are very thoughtful and insightful. This overlaps with other research I have been doing, especially the part that relates connective tissue development to endothelial cell signaling. Connective tissue is also comprised of mast cells. When mast cells degranulate, vascular permeability is greatly affected to the point where it can actually lead to an aneurysm. There is a subgroup of us, who suffer with both connective tissue disorders and mast cell disorders as well as autonomic dysfunction. Many of us have personal history or family members with anuerysms/dissections. This dovetails nicely with that Keep researching and sharing. It benefits us all! Gratefully- Julie

Sue- I actually wasn't questioning the B-12 irregularities. I agree that that may be behind/correlated with most dysautonomias. I was questioning the idea that an autoimmune response to GLUTEN was behind dysautonomia in general.. I know it may be for some, but for all? Or were you just referring to yourself? And, are you gluten-free? I recently tried and miserably failed

Really? For you or all of us? Are you gluten-free, Sue? BTW, I think you are on to something with your B-12 deficiency idea. An inability to absorb B vitamins properly may very well be behind dysautonomia. I say this based on the fact that so many of us have abnormal RBC's- too few, too many, misshapen, too large, etc.

Oh Carol- You have been through the wringer...and are still in it YES, I've been bedridden and recovered. I KNOW that awful feeling of everything coming loose (family, finances, household) because you simply can't trust your body. There is NOTHING more frustrating and frightening. My heart breaks for you. That being said, you are one sick cookie right now and you NEED to care for yourself & put yourself first until you straighten this out. Do you possibly have a family member, who could come and help out for a bit until you are more stable? I've had to ask for that before- didn't get it- but I've been that ill before and somehow muddled though. I remember the depression that you are describing. I would dread waking up, knowing what I could expect. Better days are ahead. You will figure this out. You NEED a mast cell specialist pronto. I would highly recommend traveling to see one of the docs at Brigham and Women's in Boston OR have your local docs get in contact with them. I highly recommend Dr. Marianna Castells. She does phone consults. She or any of the mast cell specialists there will be much more helpful that the Vanderbilt docs. From what I understand, they will DX MCAD, but don't provide ongoing treatment. If you can't get there, by all means RUN to Colorado to see one of the docs I found. You are taking VERY high doses of H-1's and getting little symptom relief. I think your doc is on the right track by adding the singulair. I found that very helpful. The additives in the children's version MAY be what's tripping you up. Could you cut a regular 10mg adult tablet in half? The other glaring hole in your regimen is mast cell stabilizers. Gastrocrom, ketotifen, nasalcrom, sodium cromolyn are a few. Some get great relief with these in addition to the other meds you are already taking. I don't think that claritin or even benadryl is necessary, given the very high dose of atarax that you are taking. Another potent H-1 is doxepin. It is stronger than atarax. I had to take the doxepin for almost a year before I was stable enough to switch to the atarax. You may be able to benefit from doxepin in the evenings now and atarax (as little as possible) during the day. Doxepin is an old-fashioned anti-depressant. in low doses, it provides relief and stability to mast cell patients. When I was as sick as you are, I was also put on prednisone for a short time to help stabilize me. Have any of your docs recommended that? I know I will anger some by suggesting this, BUT your worsened symptoms seem to coincide with going gluten-free. I recently tried a gluten-free diet for about a week and ALL of my symptoms GREATLY worsened. I don't know why: my GI, autonomic symptoms, flushing- EVERYTHING. I even came close to fainting while sitting. I wonder if there is something in gluten that calms mast cells down. I have read about an endorphic response that we get from it. Google gluten withdrawal. Maybe you are having an extreme form? Perhaps going gluten-free cold turkey was too much for your body. ANY change makes those of us with reactive mast cells go crazy. Once I ate a piece of bread, my symptoms began calming down. No kidding. Just a thought. Also, be careful with the dairy. I know Ensure is tempting, but many have a hard time (when so symptomatic) with dairy. Carol, I am so sorry things are so rough right now. Do you have an epi-pen? (You definitely need to carry one.) I'm sending prayers and good thoughts your way. Please keep us posted on your progress. Hugs- Julie

Hi Bren, This is an alarming new symptom. Yes, I get petechiae too- usually just under my eyes. It is associated with mast cell disease. Yours sounds quite widely spread & I think it needs to be evaluated ASAP. Heparin is one of the mediators released when mast cells degranulate- may be the cause of what you are experiencing. IF your internist thinks it is appropriate, I might get a work up from a hematologist, who is familiar with mast cell disorders. I'm so sorry things aren't stabilizing. Have you though about visiting a mast cell specialist? Julie

Interesting thread! My rheumatologist surmises that I have endothelial dysfunction in my heart & lungs as well as my hands and feet. I have severe Raynaud's and often sport purple/black fingers and toes in the winter. I am unable to tolerate any of the traditional treatments. Here is a link that describes the connection between Raynaud's and endothelial dysfunction http://www.lef.org/protocols/heart_circulatory/raynauds_syndrome_01.htm To corroborate her theory, In the cold months my BP rises and I often experience chest pain. My blood vessels clearly vasospasm in response to cold and stress. I had one echo that showed diastolic dysfunction (beginning stage of heart failure), but had a subsequent test that was normal. The way I understand it, endothelial dysfunction occurs when the vasospasm is sustained and hypoxia occurs- then the revascularization occurs. (Please correct me if I am misunderstanding this!) Perhaps the vasospasms have not been sustained enough to show endothelial dysfunction in my heart and lungs...yet. So far this season, I have NOT experienced my typical BP rise, chest pain, nor sustained Reynaud's. The only thing I can attribute the improvement to is the addition of magnesium to my med regimen. I take 500mg every night. It relaxes my blood vessels and seems to prevent the sustained vasospasms both in my extremeties and in my chest Very interesting to read about the connection between connective tissue and endothelial dysfunction, Anna!

Hi Carol- Sorry you are doing so badly lately. I think it's safe to say that all of us with MCAD have a normal serum tryptase level. If it is consistently elevated, the patient has mastocytosis. If is it elevated only after an "episode," that would be indicative of MCAD. BUT, many with MCAD have never "caught" an elevated serum tryptase. Your doctor doesn't have enough evidence to rule out MCAD, but he's correct that you most likely do NOT have mastocytosis. He may not be aware of all of the MCAD diagnostic criteria. Your elevated IgE is indicative of standard allergies, BUT MCAD patients can have standard allergies along with highly reactive mast cells. What is your current med regimen? I have heard of two doctors in Colorado who treat mast cell disorders. Maybe you can do some research and find out if they know about MCAD & POTS. Hopefully, someone else will chime in with additional knowledge of good mast cell doctors near you. One is Richard Weber, at National Jewish who has a good reputation among mast cell disorder patients. The other is Stephen Dreskin at CU Medical Center in Denver. I've heard it takes a while to get an appt. with him. All the best- Julie

Kate, everyone's had great insight. i just wanted to throw a little caution out there regarding dairy. Sounds like you are already being cautious from past experience.. Docs at Hopkins have linked diary hypersensitivities very strongly with OI, especially when the patient is having any GI symptoms. My son's ANS doc at Hopkins insists that all of his patients be dairy-free. For now, things like applesauce, bananas, white rice, lean chicken or turkey, well cooked soft veg, or baby food pure veg, and lots of vitamin water would provide nutrition and nurture your gluten-free, dairy-free, slow GI needs. When my son was at his sickest, we would take Rice Dream (soy milk is fine too) and frozen fruit, like strawberries, peaches or blueberries and blend up a smoothie. If you have zofran or phenergan (for at night), that might help with the nausea. Hope this rough patch goes away quickly! Julie

Gluten free aside, sounds like your GI tract is slowing down. You are describing pretty classic symptoms of gastroparesis. (Fwiw, the same thing happened to me on gluten-free, but I also had severe pain.) Those with gastropareisis have to eat small frequent snacks, low fat, low fiber. My son has to use a GI prokenetic, a tiny dose of Ery-Ped (liquid erythromycin.) Sorry, Kate. Hope things settle down for you. Julie

Amen & back at you ALL!

"Fwiw. I suspect that your reaction means you need to remove it from your diet." I agree. SOMETHING is going on here & it could be the root of my issues. My response to gluten-free has been so violent and so extreme.....it is telling, but WHAT is it telling. I am trying to listen It's definitely not too much meds (with improved symptoms.) My symptoms greatly WORSENED. If anything, I needed more meds. It's not a reaction to processed Gluten-Free foods as I didn't ADD any of them. I just ate more cleanly- the same foods I was already eating. I just cut out gluten. My GI tract felt like it was paved with gravel and weighed 1,000lbs. I felt that the only thing that would soothe that wound was a soft piece of bread or a warm bowl of pasta and I was RIGHT. Why? Now that I've added gluten back, my BP and HR are normalized too. STRANGE. I thank you all for trying to help. I am going to pursue this further with specialists. I guess maintaining a gluten diet will make my testing accurate Very Strange. Hats off to those of you who could do it. It's so wonderful to find a definite trigger, eliminate it, and feel better. THAT's what I was expecting...

Gluten Withdrawal??? http://www.celiaccentral.org/News/NFCA-Blogs/Ask-the-Dietitian/Ask-the-Dietitian/494/vobid--5238/ http://www.corepsychblog.com/2007/08/celiac-notes-opiate-withdrawal-from-gluten-and-casein/#axzz1eYZljPke http://blog.drdavidwilliams.com/blog/digestive-health-guidance/gluten-withdrawal None of these mention pain and syncope. I wasn't depressed or anxious. I was in pain, nauseous & struggling to remain upright. Maybe I'm an extreme example? Interesting to hear your experience, Kate.

OK, gluten-free people. I have a conundrum. My attempt at gluten-free has made me very sick. THIS was the only thing I was doing differently. Prior to starting, my GI system was functioning (not well), but it worked pain free. With my med, lifestyle regimen, my HR and BP were fairly stable. It all went to @%#& once I started my gluten-free diet. I was curled up in so much pain last night that I even considered the ER. Once I was able to move...and eat, I had a piece of bread and feel so much better. WHAT IS THIS? While on the diet this past Sunday, I almost passed out at Church when I was sitting. I had the crazy build-up of pressure, thought I was going to have a seizure, barf, or faint, had tunnel vision, heard loud buzzing, then ended up running to the restroom for "D." (It was not anaphylaxis. I had just taken my meds & did not have impaired breathing, etc.) My BP is crazy low, 79/49. I have severe pain and nausea anytime I eat anything. The only thing I could think of is that my gluten-free diet was higher in fiber, which may have re-aggravated my gastroparesis/small bowel dysmotility, which in turn threw my whole ANS off...alot. BUT, that doesn't seem to fit, as my regular diet is very high in fruits, vegs, whole grains, etc. I have found others like me on the web. One woman was even fully DXed with celiac. She felt fine while eating it, but got sick when she stopped. Don't get me wrong, I have oodles of symptoms, but they were managed AND I never attributed them to gluten. One other idea I had was that this is an MCAD thing. We masties have "Goldilocks" syndrome and thrive on homeostatis. Maybe this was too much of a change too quickly??? I see my allergist and GI soon and am due to be scoped on both ends . I will pose my conundrum to them and see what they come up with. In the meantime, I'd greatly appreciate any insights. Lastly, forgive me Kate for hijacking your thread. You inspired me....before I crashed and burned.

Hi Bren- I don't know too much about the specifics of the cutaneous part of mast cell disorders. You certainly demonstrate dermatographism, with your red raised marks after slight scratches, which is indicative of a mast cell disorder. Other conditions you might want to look into are: urticaria pigmentosa and telangiectasia macularis eruptiva perstans, both of which are indicative for mastocytosis. The jury is out on whether or not, the latter two are permanent. Dermatographism can usually be well controlled with a good MCAD regimen. Let us know what you find out. Juiie

Very cool Can't wait to hear it- 'specially your accent. Good luck!

Now THAT's what I'm talking about. You just built the perfect case for a lip biopsy Be sure and let us know what it reveals!

I think so. POTS is really just a symptom- that basically describe an oddity with HR- a sustained 28-30BPM increase from supine. If you want to summarize all of your symptoms, a dysfunction of your autonomic nervous system might be a better monicker. That being said, ER docs are pretty notorious for writing most of us off as having anxiety. It'd be a rare one who'd actually take the time to look up or understand dysautonomia. Sorry about the gallstone. I remember the pain from my gallbladder dying out- OUCH

Oh yeah. I am curled up in pain right now from a trial at gluten-free. I almost fainted at Church on Sunday- while I was sitting. And, THIS was supposed to make me feel better??? Turmeric helped dramatically at first. Then I developed a sensitivity to it. I gingerly re-trialed it months later (lower dose) and got no response- positive or negative. Paradoxical and consistently inconsistent. Grrrrrrrrrrr

Good for you, Aaron. In another post I asked WHY you were taking an antihistamine. You just answered that question The serum tryptase will most likely rule out mastocytosis, but not MCAD. And, traditional allergy testing is a great idea. On the off chance you are allergic to NOTHING, MCAD could be a distinct possibility....although you can have traditional allergies with overly reactive mast cells too. I break out in full-body hives and experience a huge BP drop with pistachios and all testing (scratch & RAST) shows I am not allergic. I saw that you are having a hard time with antihistamines, maybe give nasalcrom a try. Its an OTC mast cell stabilizer. Let us know what your testing reveals.

Like Katy, I do fine with antihistamines...but much (not all) of my dysautonomia is mediated by over-reactive mast cells so antihistamines are a mainstay of my treatment plan. Serbo, my son also had an awful reaction to zyrtec. It completely oversedated him, even when he took it at night. The whole next day, he was so out of it. Thankfully, he does fine with loratadine. Forgive me for forgetting, but WHY do you need an antihistamine? There are many other things you can try, like allegra or naslcrom. With antihistamines, it is often trial and error until you find the right one.

Sounds exactly like neurally mediated hypotension/NMH. The fact that it happens in the shower is classic. I bet your TTT wasn't long enough. At Hopkins they run it for 45 minutes. It often takes that long for the drop in BP to occur. Prior to the drop, is when the head rush and tachy starts. Some do have nausea and even vomiting with this, but not all. Your treatment should be focused on building fluid volume- lots of water, gatorade, salt. Many with NMH benefit from florinef. Also, life style modifications can be very effective. Lots with NMH feel better in the evening. Maybe plan to shower then with warm, not hot, water. Drink plenty of fluid before showering and after. This is an old link from Hopkins about NMH. Chock full of good info http://brendashue.tripod.com/nmh2.html

I'm with Jackie on this one. Ask yourself HOW this could potentially change your treatment. If it means adding eye drops or something equally as benign- why not just give them a whirl and see if they help. IF it means a change to your med regimen that could have possible systemic implications- go for it. I love open-minded, experienced (aka old) docs, who will run empirical trials. So many young (less experienced) docs are so focused on testing that they forget to look at the bigger picture. Let us know what you decide

Aha, thanks Rama. I guess I must be "normal-flow" after all. Any stress (orthostatic or otherwise) will set off my Raynaud's, but I can usually get blood to my extremities when I lie down. It's intermittently cooling off here in the South- we've dipped to freezing a few times and so far NO EXTREME vasospasms of my fingers and toes yet. Last winter I sported black fingers much of the time. The only thing I'm doing differently (as I can't tolerate any traditional treatment) is magnesium. It's relaxed my vasculature tremendously and even improved my tachy. My wonder mineral

Thanks, Dizzy- I am still going for it, but inadvertently making mistakes- like my Ezekial bread. I can't say I feel better, if anything a little worse. My tummy aches and gnaws for something soothing. I suspect I've upped my veg intake (already high) and my slow GI tract is yowling. Brown rice has been able to satisfy that almost burning feeling. I SEE how a definite DX would make a huge difference in stick-to-it-iveness. Once I get either my GI or Allergist to test, I do plan to break the diet to stack the odds of a true result. Gluten-free hasn't yielded any positive results yet, but my symptoms are of a very l-o-n-g term duration and realize I can't expect things to turn around immediately. But, I DO appreciate the warning. IF things greatly worsen at that point- THAT (in itself) will be very telling. Lara bars are my only convenience food- I've enjoyed them for ages. Let's see if I can truly avoid the apple and pumpkin pie this Thanksgiving. That's my plan I greatly appreciate all of the tips and encouragement. Julie

Thanks for sharing, Ana!