Clairefmartin

I love this thread! No hijacking issues, I am learning lots! Carol - I am very sorry about your Mom, and I hope you get answers soon as well. I am still waiting on results from my 24 hour urine Methylhisatmine (sp?) and just had almost 20 tubes of blood drawn yeterday, one of which was tryptase. We'll see what happens. I had another attack when eating last night - pork loin with just sea salt, pepper and garlic, plain green beans, and this risotto that I have eaten for years. My entire back of my throat started itching and feeling tight, and I felt like someone was sitting on my chest. Totally random! The only positives with my IgE blood work were pecan trees, cats, shrimp, and dust mites. Why am I reacting to all this other stuff??? Very frustrating. Getting ready to call the allergist for the epi-pen script, and we bought some benadryl and zyrtec to keep just in case. I had a quetsion if any of you know anything regarding the MCAS/MAsto connection to the GI tract. I have had horrible GI issues and had to go gluten free 7 years ago. I'm now wondering if it is all related. My neuro-endocrine doc mentioned doing a pH test of my stomach - is this a mastocytosis test? Have any of you had it? It would really tie everything together nicely - I think I have hyperPOTS, the Gi issues, and the skin/food allergies. The only other Dx'ed issue I have is Raynauds, but I'm being tested for Cushings/Addisons and other autoimune stuff. I really am on the hunt for why I have POTS, I'm over being unable to function! I could handle te previous dizzy/tachy stuff, but this is out of control. Luckily a neuro from the Cleveland Clinic just relocated to my hospital group, I'm try to get an appointment with him too - trying to avoid the 12 hour trip to Vandi. Thanks for any input! Claire

Print these out and bring em to the docs! http://jnnp.bmj.com/content/80/3/339/reply#jnnp_el_4620 Dr. Raj differentiates between POTS and anxiety.

I am actually working with another POTS patient who is a lawyer on that very thing. We are trying to enlist a few specilists as well. We'll see what happens!

Did you see the new Levine article? http://hyper.ahajour.../58/2/167.short I won't share my more descriptive thoughts and language on this, but I am shocked the AHA published it. Excercise can cure us all because we ALL have small hearts. Yeah right.

This described me as well (before the horrid downfall of 2011 - still ongoing), and I was symptom free during my first pregnancy and while nursing. Second pregnancy took me down I relate with Rama as well, I always bounce back (usually), but this time is taking so much longer I'm really hunting for answers as to why I ave POTS. Anyhoo, gread thread, thanks for all the articles and research everyone!

That sounds horrifically scary! I'm glad you are "ok" and being treated in a facility!

Vandi is 12 hours from me. I think its worth the trip after so many years of suffering!

I was totally symptom free for a few years. But it always came back. And during those years I was not on any forums or groups online - I was out living So they are not on here probably...

Even of you have to travel, it is worth the trip to see an expert. There is a new site called www.giveforward.com, they help raise money for medical expenses if you need help with the funds getting there. I have been searching locally for help for almost a decade, and just am finding it. Going to a specialist compared to other docs is an amazing experience after all these years of blank stares. But I have a trip/apt at Vandi scheduled in late July just in case it doesn't work out, I am convinced that finding the CAUSE of POTS/Dysautonomia is the first step in successful treatment, and no one has bothered to do that with me here locally - and then I gave up, and ended up how I am now. They are finding more and more causes - even if you don't have an underlying disease causing it, a malfunction is happening somewhere! So don't give up people!!!! Fight for answers. That was my pep talk for the evening

I will work on my inner thug just for you Julie. Not sure what that entails, since I dont walk much I can't have my pants hanging off my butt very easily "POTS on the ground, POTS on the ground, looking like a fool with your POTS on the ground" (another song spoof -- I feel lyrics coming!)

Thanks Julie and Carol and Anaphylaxing (and everyone!). I spoke with the allergists PA, he will be back in the office on MOnday and they are most likely going to call in the epi-pen then. She had reserached POTS and read what seems like a good starting point - and that was what I have read on here - Zyrtec! I was so happy to hear she read up on everything, what a chnge to deal with concerned docs that want to help. I am officially done with peeing in the bucket, we'll see how the results come back. I did get some interesting IgE results though, was wondering what you guys thought: -total level was 127, she said normal was below 114 -barely positive for shrimp (knew that, make me itch, haven't eaten in years) -positive for cats, REALLY allergic to dust mites, and positive for pecan trees. -negative for birch tree, which shocked me, because I react to a lot of the foods that are typical to oral allergy syndrome, like carrots and other random stuff like melons -Neg for all nuts! Have broken out in hives from eating almonds, itched from peanuts, flushing for everything....really weird that my IgE's are neg. If I understand correctly, that may point to mast cells? Who knows. Anyways - my body is whacky as always. Thanks again for all the encouraging words - I need them I try to keep my sense of humor during all this (Drop it like its POTS, gangsta style), but its tough! Oh, and Julie, I don't really listen to much rap - only older stuff, but I taught high school so I was down with the homies

Thank you all! My parents are actually moving down here from DC and my Dad will work remotely in April to help out and be nearby, so that shoudl be a big big help. I called my allergist this morning, they are calling in an epipen and will give me recommendations for ans H1 blocker. I also called DR. Vinik - my new POTS neuroendocrine doc who i LOVE, and asked for advise as well, since they are testing me for mast cell issues too. They want to do a pH test of my stomach relating to mast cell overactivity (I think). We also just hired (courtesy of my generous family, cause we are broke!) a family friend/college student to be here 3 days a week for a few hours, so I can take a break and go to Dr apts. That is a huge relief, after my Mom left when the baby was 6 weeks old I have been on my own - home and bed bound raising her, it has been the most challenging thing yet (besides surviving the pregnancy and the PEs). I think I am not prgressng in reconditioning because I spend all my (limited) energy on the baby care, and God knows what I'm going to do once she's mobile. And Julie - I was in the hospital for almost my entire pregnancy, my POTS went nuts and I was falling left and right, HR and BP went crazy, had vasovagal fainting for the first time, O2 sats and HR dropping before I fainted, and the only way I would stay hydrated was by IV. Then they put a pick line in, didn't flush it with heparin while I was bed bound, pregnant, AND have the heterozygous factor 5 Leden gene, and I had double digit DVTs, a 2 cm clot in my right atrium, and over a dozen bilateral PEs that almost killed me. It was no fun. Then physical therapy wouldnt work with me because of my HR and BP not being stable, and me being pregnant and on blood thinners - fully thinned - was a real fall risk liability. So they let me rot in bed in a hospital, and I am now trying to recondition with the help of a very nice home PT that knows nothing about POTS. Anyways, thats why I blog so much now, it was quite a journey and my care was terrible to say the least, and I think I have PTSD from it This mast cell stuff is all new since leaving the hospital - I have always had the dermatographism and really really sensitive skin and allergies, but the random food reactions and increase in my skin's reactions are recent. Thank you all again for all the input!!! I'll let you know what the docs say. I go on Monday for my first (in almost a decade of POTS) autonomic workup and a huge blood work panel for all kinds of stuff, including more mast cell testing, autoimmune testing, and neuroendocrine testing.

Thank you all! Julie - I really appreciate the info! I am in a weird situation in that I am home bound, and fairly bed bound, without local family, and all of my local friends work. I can't drive to the ER, I actaully have not gone anywhere except to doctors and the hospital (spent 9 months in patient last year) in over a year and have to go by medical transport because of the stairs into my building. I have to call 911 if anything happnes during the day, and try and find someone that can leave work and come take care of the baby. Its very frustrating!!! I worry that I am over reacting, and dont want to bother my husband or anyone else if it turns out to be nothing. I am calling my allrgist tomorrow to get an epi-pen. I have been having all these random reations to things I am not allergic too, and have severe GI issues, big time dermatographism, random rashes and hives, and am having my tryptase tested next week. I'm peeing in a "bucket" right now for the 24 hour test, which I guess is good since I had an episode today. I'm pretty sure something mast related is going on, but I do have traditional allergies as well (cats, dust mites, pollen, etc...). I just found this article http://www.jhoonline.../content/4/1/10 and sent it on to my allergist, he has been wonderful with reading what I give him and did his fellowship at Mayo so knows about dysautonomia. Anyways, I am going to talk to them about what to stock up on, I take Zantac, and I guess I'll get Zertec start? I have not taken any decongestiants or cold related meds besides benadryl because I react so badly, but you are right, I need something in case of an emergency and to take regularly. Oh, and my neoroendocrine doc is testing my for it as well after he saw my skin reactions and I have been taking pictures of these weird flushing things and rashes. Thank you all again, this is very scary and frustrating!

Nope, I gutted it out. Lasted over 2 hours...was very scary. I'm wondering if mast cell issues are progressive???

Naomi - Yes, IV Saline worked wonders. The fluids helped me regain some osmotic balace and decreased the retention. My doctor agreed, and also agreed it was weird. I was also pregnant at the time, so my body was all out of whack. We should do a poll on the ear thing and see how many actually have issues.

I have the ear thing too. Actually when I was pregnant and came off Klonopin too quickly, I developed what they thought was Meniers (sp?) because I had such bad vertigo, tested positive for it with the audial test, and for a month straight my ears felt full and had no sense of gravity the vertigo was so bad - I couldnt hear over the noise and ringing. Then they upped my IV fluids, and it started to go away. I then restarted Klonopin at a very low dose later in the pregnancy when I came off fluids, and the vertigo stayed away. But i can't sleep in a quiet room because of the ringing, I block it out with background noise, and my ears always feel "funky". My ENT was actually who first told me he thought I had dysautonomia and to look it up many years ago, and he can't find anything now. WEIRD!

Hi all, My throat is currently "tight" feeling as I just had what I think was another MCAD/Masto attack. I'm currently being tested for both, don't know what i have , but the attack I just had scared the heck out of me. I think it was set off by touching an air filter - things like that and insulation have always irritated my skin, but nothing like this! I have only eaten the same old things I always eat today that don't bother me. I wheeled back to my room after touching th filter (have infant I care for in bed), and my ear went nuts itching and going numb, half my face then followed suite, and then my tongue started itching and my throat started feeling swollen. Of course I panicked, I am alone with a baby with no local family. All my friends and my husband work. My husband has to be pulled from his classroom by an administrator if I call in a panick, so I try to wait things out before calling - he has missed a lot of work because of me. I called my home health PT, she said call the allergist - so I spoke with a PA who wanted me to go to the ER. She said with mast cell issues, the anaphylaxis can last a long time. I take klonopin, so I don't take benadryl (have to care for baby AWAKE) and antihystamines make me feel tachy and anxious, so I dont even have any here. So she said go to the ER so they can monitor my throat, and that they were just starting to get my bloodwork back, and that my general IgE levels were high, so they will give me an epipen. No other specifics at this point, I just had the bloodwork done. As you can tell, I am still at home trying to wait it out and not in the ER. Its been about an hour, and my throat is still tight, I am burping as well which is weird (I took Zantac earlier) and that started when my throat started closing, and I do have a hiatal hernia which I think can make your throat feel tight as well. I took more Klonopin to calm down, this episode really scared me. Anyways, the weird thing was that I usually react on my right side of my face, but this all happened on the left - wondering if I touched my skin on that side after touching the air filter. Does anyone have any thoughts on this? Also - I read a post where poeple were talking about your tryptase levels and getting a diagnosis- my allergist said they have to be above 20 for mastocytosis, wasn't sure what the criteria is for MCAD. I remember a few of you debating the tryptase thing as well, was wondering if there is any literature on it - I have only found the one article on the link between hyperpots and mcad. Thanks! If it gets worse I'm going to the ER. Hopefully it won't.

I just wrote an article on my blog about this exact thing - called a year spent in a room not complaining. that title about sums it up. i defriended all the annoying people on facebook who whine, and stopped following them on twitter. my blog post actually helped some of my family understand what was going on more because i finally let loose and explained how miserable it has been, and the constant struggle with "it could be worse" vs "this *****". I definitely try and keep in mind that i don't have cancer, I am not dying, i do not live in a hut in Africa in a draught ridden area, etc.... But that doesn't make it suck any less. I was in my early 20's when this hit, and worked around it for many years and continued to live life, but since it has truely become disabling its been surreal. I can not imagine being a child or teenager and dealing with this - i thank God I was a bit older and really admire those tough kids dealing with this. Anyways, Venting is healthy I hope we all feel better soon.

I use my iPhone calender - I set alarms that make my phone buzz and remind of everything. I also have an app for taking meds that I love. I also keep a notebook next to me, I have ADD art brain and my head really gets going with to-do lists and ideas and I have to hand write those down constanty. Also maybe ask for help! Do you have anyone that can act like an assistant while you adjust? I need one of those Take care and good luck!

Twitter and blogs. There are many tweeps I have met with POTS, and there are blogs/facebook sites that are state specific.....

I have nothing better to add - I think both corina and anna had great suggestions/explanations regarding your husbands reaction to the situation. I did want to ask how your husband was fired? What about the Family Medical Leave Act? You can not be fired if you, a spouse, or child is sick - employers are required by law to keep the position open and available - I believe no pay is required, but they can't fire you for a year or 100 days missed (I can't remember). Please look into this - they had no right to fire him BY LAW for missing work because you are sick. I went through this with my husbands work as well. Good luck and I hope you get some treatment soon, I have been reading your posts and I can't believe Mayo didn't do more. Have you thought of maybe trying another center like Vanderbilt? Claire

Me too. I feel robbed of my life, especially over the last year or so. Hang in there, and there is hope in all the new reserach and treatments coming out.

Excellent! Glad you got in so easily! I think I'm going to be tested by that neuro-endo you mentioned earlier in the thread, they wanted to review my 4 hour glucose and see what my insulin was doing - I have reactive hypo as well, with some major triggers...they have caught low blood sugars with me, once at my GP I stumbled in and it was in the 50's. Since then I eat high protien, low sugar (with an occassional splurge). I really feel the swings, but get kind of scared to do too much monitoring because it just freaks me out. Anyways, I'm excited to see what Mayo says and that you got an appointment - I hope you get some answers! Claire

Wow that is great to hear! Are you local in Hampton Roads?? I have yet to meet/connect with anyone with POTS around here. I REALLY liked him, and was wondering if he diagnosed your Autonomic Neuropathy? I think I have either that or Small Fiber Neuropathy, and thought I would need to see a neurologist for this, but if he can do it, that'd be great! I've had no luck with Neuro's here, had to go to UVA, and even that was kind of a wasted trip. Thanks!

This is simiar to me - first episode was Dec 2002 (had major spinal surgery in 1999, haven't been the same since), then waxed and waned for many years and had one successful pregnancy. Successful carreer, fairly normal life, kind of just dealt with it. Actually joined DINET in 2006 in a flare up, then felt better and dropped off for 4 years. Then Dec 2010, second pregnancy and blood clots took me down completely, am now homebound and not able to be upright for more than a minute or two due to complete deconditioning. I really think that me staying so active for those years helped ward off the worst of POTS. I am on the hunt for answers now, never found out the cause of my POTS or other symptoms, but I have to cling to hope that I will get my life back in some form.