My last ditch attempt in trying to live...please help

Allergies, blood and immune system
1

Someone please help me Ive tried so hard to deal with these medical problems that it has led me here in a last ditch effort for help. Im going to be completely honest in hope that someone in the community can save me. Im on the verge of possibly commiting suicide because I can no longer see the light at the end of this horrid tunnel. I want to live so badly but I cant see a way out and living like this is complete hell. So heres the details...

I was diagnosed with marfans clinically at age 16 but showed variant on the genetic test. I possibly could have eds but the geneticist diagnosed me anyways in order to get me into the losartan marfans clinical trial.

 I had a pleurodesis on the left side at age 18 at ucla by a thorascic surgeon due to recurrent pneumothoraxes

I have had a border line aorta of 32 mm that never bothered me since I was 18 and now im 28. 

I had an small pneumothorax on the left on dec 2016 at ucla hosipital but I went home hoping it would heal on its own.

In march 2017 I had a similar air leak sensation and tried to wait it out  by taking percocet and codeine. Since then my life went to complete hell i started getting this horrible swelling in left neck and burning sensation like my blood was on fire, I couldnt swallow too well and developed a high pulse of 100 with a blood pressure of 100 top number. I went the ucla er fearing cardiovascular collapse then they took an iodine contrast ct and found nothing and sent me home. The next morning I woke up with the worst heart pain and swelling in my neck. This led to more percocet and more iodine ct er trips. Since then Ive had drenching night sweats every night with the worst sun burn sensation that wakes me up like 5 in the morning. In mid May I had numbness all over my fingers and feet and thought it was clots so i took some aspirin in case but it caused even more er trips because i would wake up with this painful burning sensation like heart failure or something then if i stayed awake i would just pass out and be instantly woken up by pain. My blood pressure dropped to 70 with a pulse of 105. I rushed to ER and they did another iodine ct scan and found squat. Ive gone to so many specialist and got placed on anxiety meds. Ive seen the cardiologist, pulmonoligist, ENT, endocrinologist, rheumatologist, dermatologist, and pain management but everything checks out. Ive even gotten so desperate with how sick i am every day that I even went to the psychiatrist and took the lexapro and klonopin for a while. Those made it horrible. I was mentally ok even though the flare ups were horrible and never went away but after the psych meds I got super emotional and twitchy. I got off them and dealt with the withdrawal painfully, but now recently Ive developed hives that just come and go anywhere between 5mins to a few hrs all over my body. I found out about mast cells from looking up allergies recently and realized that when I wake up to cold sweat and swelling my eyes are super puffy and my esophagus is super dried out like I used to get allergies and take benedryl. Ive become hyper sensitive to heat  and flush with a pulse that gets higher by the day. Every day that passes by my pulse consistently rises with a dull chest pain that I have no idea how to lower. Im taking benedryl, zertec and claritin and histablock within the last few days. My doctors refuse to see me anymore. They pretty much have forsaken me because its in the system that I have anxiety and been sent to a psychiatric ward. Its just happened so drastically I cant cope too well. I was a normal person that didnt have have any of these issues and now i cant stabilize my debilitating condition especially my heart and no one believes me because they think its anxiety disorder. I am struggling but thats because I cant get any treatment or help for 4 months of a nameless illness that randomly flares and wont get any better. Ive looked into the cancers but my cbcs are all normal and all the cts Ive had are so recent and show no tumors or anything. I feel like my blood is poison everyday because it spreads an inflammatory pain throughout my body causing me to sweat cold sweat and wear my heart out. I cant stabilize because no doctor seems to take me seriously enough to help me manage this. My last hope is that someone from the community can help me through this I dont know who to turn to anymore. My parents are sick of my crying and endless pain. Im so sick of this I just want to go back to how a was a few months ago. Is that even possible? Sorry for ranting things are beyond rough and Im so lost and the condition keeps worsening. Thank you for your time. 

2

Hi mystruggles

You are not alone in this, and there are people out there that can help.

If you are having these suicidal thoughts we strongly recommend you to speak to someone. The Samaritan offer a safe space where you can talk openly about what your are going through.

They can help you explore your options, understand your problems better, or just be there to listen.

Their contact details are on our patient information leaflet > https://patient.info/health/dealing-with-suicidal-thoughts which also offers lots of other advice on how you can access the help you need.

Please do reach out - the team at the Samaritans, and the other people in our leaflet, will understand exactly what you're going through and will be able to help.

Kindest Regards

Patient

3

Ok, it's possible that you have some mast cell stuff going on. It's also possible it could be allergies. Or both. The symptoms can be so similar that it can be hard to determine where allergies leave off and mast cell stuff begins.

What you are describing definitely sounds like some sort of anaphylactoid reaction. Keep in mind, while not everywhere lists a feeling of impending doom as an anaphylaxis symptom, I can attest that it is. It's possible your anxiety could be a symptom, or a trigger for the start of symptoms, or both.

My own experiences with the "feeling of impending doom," is a feeling like I'm about to lose everything and everyone. Or perhaps like I've already list them and everyone is going to realise it soon. It is utterly crippling, and hands down the worst symptom to me, as it destroys all my hope, and for me has taken anywhere from 1-5 weeks to fully subside.

The FIRST thing to do is to make an appointment with an Allergist/Immunologist. Make certain your health insurance will cover specialist visits without a referral. If it won't, schedule an appointment with your regular doctor. Even if he doesn't believe you, he will probably write out a referral if you annoy him enough, just to get you out. The next thing is FIND A NEW DOCTOR. You want to see the allergist first before you see a new doctor, so that anything the allergist says will be a point in your favor.

Type up a description of these attacks/flare ups. Don't speculate as to the cause of it, just type up a "play by play" description as to what symptoms you experience, in what order they start, how long they last, etc. Be as detached and clinical as possible. If you have that of low blood pressure, I assume you have an at home bp monitor. Take pictures of your bp readouts, and picturesof the position of the cuff as it's on your arm. Video is even better. Evidence that you are telling the truth is hard to refute.

Pictures of the hives, or flushing or any visible swelling is important too. Anything that is visible and obvious, take a picture of.

The allergist is critical for more than one reason. First, they have the most experience recognizing anaphylaxis. Second they can prescribe you epi-pens which you clearly NEED to have on you,. Third they can test for allergies. Even if it's a mast cell disorder, you start the journey towards diagnosis with ruling out, or confirming, ant allergies. If you once had allergies, you could have some again. Allergies WILL act as a trigger for mast cell disease, so it's vital either way to identify any.

Last: start a "food journal". But record everything you eat, also any exercise you do, time you spend outdoors in the heat, showers: hot warm or cold, etc. Be as detailed as you can. Also write down ANY symptoms. You want times you eat, times you have symptoms, times for everything, down to the minute. This is how you discover your triggers. You read back, and look for patterns. If it's a mast cell disorder, then you will have triggers, these are things you will need to avoid. Like you have no doubt read, they can be environmental, food, stress, emotions, etc. But they WILL be there. So document, document, document EVERYTHING. Seriously I hope you get to feeling better!!! Nothing sucks worse than feeling terrible and not having your own doctor take you seriously!!!

4

Thank you for responding, I made an appointment with an allergenist outside the system who was listed on a different mast cell website who works with a a mast cell immunologist. I got an appointment at the end of august hopefully I can have her look into it. Ill try my best to keep track of everything even when im dysfunctional. Im just not sure why it triggers randomly sometimes like when I wake up in painful cold sweat with a high pulse and low bp. It feels like my heart skipped a beat and my lung just spasmed because of it then i get this swelling in my hands and feet and a numbing pain in the back and side of my neck. I have the ppl around me monitor me when this happens but they keep saying its not ER heart attack. Its so hard to stabilize because the symptoms are systematic and just completely unexpected. I know for a fact I didnt have this nerve pain thats on the back of my neck that feels like someone is pressing really hard on the sensor of my brain and sciatic nerves until they put me on the lexapro and klonopin in the psychiatric ward. I have been off those meds for about 3 weeks but that issue still hasnt subsided. I wish they didnt put me on those anxiety meds it makes it so much harder to rule out what is what. So its not like I dont want help preventing suicide its just the last time I mentioned that it just made it alot harder to get the proper treatment. They just put me on tranquilizers and ignored everything I said. I do get hysterical when the flares get horrible but when it subsides I do alot self reflection and try to make better decision for the future. I want to get better and get everything under control so bad it comes off as desperation at times. I would like to ask anyone if the conditions of mast cell can be undone and is it possible for me to have my old life from a few months back. Its just with all my symptoms I cant seem to find many self limiting conditions. Its hard to know what to hope for because alot of this diseases seem to come up uncureable and living my life since its occured has been horrible every single day. I just hope that if mast cell is what I have that at least there are ways to make my life quality manageable or undo the initial trigger. Thank you for helping me. Its alot less distressing having a path rather than wandering aimlessly not knowing where it would lead to.

5

I did end up discussing it with my psychiatrist and he understands I'm going through some really difficult and terrifying things but unfortunately he's got about as much answers when it comes to my condition as the guys at the er. It's hard being able to to separatensure which symptoms come from what issues. My primary doctor even gave me the chances are you will never find out what's wrong with you speech. I trust that she will try her best just as I will on my part but a lot of my symptoms and how long they have lasted point at a lot of non curable rare diseases in which very little is known about them aside from the people who go through them. I was hoping someone could give me an outlook because living like this is torture without an end. Thank you for your concern I'll make sure to use it when the depression gets too bad.

6

I feel your pain. 2 years ago everything went to s**t in my own life too. I am 41 now. At it's worst I was starting to get dizzy and lightheaded just being out in the sun too long, even driving in an air conditioned car. I had hives appear and cover most of my body, armpits, groin, buttocks, legs arms, abdomen, and last for up to 10 days. Even taking benedryl constantly wasn't enough to help me get much sleep. Trouble swallowing, with food impaction, constant itching. Constant GI problems, and brain fog. Seriously the itching was everywhere but especially my legs, it never went away. I had problems when I exercised, always had a problem with the heat and sun (my whole life). Chemical smells etc. I also got these "attacks.". They started with this feeling I describe as anxiety, followed by *severe* GI distress (diarrhea, vomiting, abdominal pains), brain fog, flushing, fatigue, mental disorientation so bad I would spend hours where I don't know if I was awake or asleep. Cold sweats, feeling like I'm burning up, then freezing again. One of these attacks would hit hard, last for ~ 10 hours, then slowly subside. The anxiety would fade slowly over a period from 1-5 weeks, as would the GI distress, and the chills/hot stuff. It felt like the worst flu or something ever, coupled with soul crushing anxiety. I also have had a lifelong history of joint problems/hypermobility/neuropathy, which runs in the family on my mom's side. (Possible EDS, but undiagnosed).

After more drs appointments than I care to list including scopes shoved up/down various places, biopsies etc. I picked apart (mostly) what's going on with me: I have allergies, and eosinophilic esophagitis, and some nice fun mast cell activation thrown in for good measure. Add in low testosterone, and a vitamin D deficiency for good measure. Now I avoid many many foods, I take way too many pills per day, but.... I fell lots and lots better than I used to. I still have problems if I eat the wrong thing, or exercise too long/hard. Or if I'm out in the sun for too long. However the symptoms are much more mild than they used to be

I find that if I forget a single done of Zyrtec/Zantac I start to have symptoms flare up, but these symptoms arent as bad as they used to be. Ive had 2 of those "attacks" this year, both felt muted and mild by comparison, with symptoms fading

in 2 days. Treatment has never made things go away, it just dialed the stuff waaaayyy down. I still have the joint problems. Nothing changed there. (My right jaw joint has been slightly out of place since Sunday, so 6 days now, which is a new record.). But that's stuff I've had my whole life and I'm used too.

The TL;DR of this comment is:. I felt like I was dying 2 years ago. Now I feel while not all better, at least relatively OK. I feel like I can live a normal life . So there is hope.

7

It gets really confusing at time because Ive had that lung surgery that acts up from time to time. Im not really sure if this is a reaction from the talc that is in my chest cavity causing the tachycardia or the mast cell issue. Recently I get this bruising pain on the lower left side that doesnt hurt when I press on it just when I change positions and deep breathing. I tried to contacting the doctors im supposed to but because I got labled as anxiety disorder they no longer take my issues seriously. I know when this first occured I wasnt the calmest of people because the symptoms seemed confusing and the life quality was completely horrible. It seemed like red flags were going up left and right. So naturally I panicked and went to the er multiple times cried in doctors office and tried desperately to get every test under the sun. So now when im after all the results have come back ive managed to eliminate and carefully analyze the symptoms that I have. My heart acts up pulse goes up and pressure drops usually about 110+ pulse and pressure of 100. It is definitely affected by the heat and stress but can happen anytime at any mindset. Then the left side of my neck swells and I get the burning skin sensation around that area and swelling in my hands and feet which causes the numbness. Then I get the difficulty swallowing and breathing and break out in cold sweat which triggers the hives and itchy sensation. I wish I could figure out what is causing my heart to go nuts multiple times through out the day. Ive never had heart issues before april. I started one morning after I took a percocet for chest cavity pain and then the morning after night sweats and neck swelling and burning up with no fever. Thats they unique symptom ive had no fever but im burning up like eye balls feel like there melting and neck gets super sweaty making me think it was thyroid reaction to iodine contrast. Either way i need to get a diagnosis for whatever it may be. Thank you for responding it makes me feel like theres hope if I could just hang out for a bit longer. Its scary when systematic symptoms occur and nothing seems to relieve the symptoms while doctors ignore your cries for help. Is there any way I can tell if its a anaphalaxis issue from the symptoms because everyone keeps insisting its anxiety and im not so sure its panic attacks. Would they see evidence of mast cells activation from a skin biopsy because I had once done last week?

8

ok, to answer the questions: first there are some general things that suggest anaphylaxis.  Anaphylaxis can make your blood pressure go down, while you heartrate goes up.  this is called shock

http://www.medicinenet.com/shock/article.htm

anaphylactic shock is where your blood pressure crashes and it's a serious symptom.  Though there are those with mast cell disorders that can experience high blood pressure instead of low,  and those with conventional allergies, who don't experience a drop in blood pressure. (who can experience elevated blood pressure when the panic hits, as a severe allergic reaction can easily cause panic in anyone)  

Anxiety tends to make the blood pressure go up.  but there are a few who experience blood pressure drops.

So as you might guess, this is more suggestive of an allergic type response, but hardly conclusive. 

Panic however, does NOT cause angioedema 

https://en.wikipedia.org/wiki/Angioedema

this is likely the swelling you are mentioning.  it's a classic allergic response type symptom, there IS some literature claiming it can be caused by anxiety, but this is not substantiated well at all.  Hives are also highly suggestive of an allergic type response.  (keep in mind, by allergic type response, read: allergies, OR mast cell disease)  Your story sounds MUCH more like an allergic type disorder than an anxiety disorder.  

For evidence of mast cell activation in a skin biopsy.  no chance at all.  unless you have cutaneous mastocytosis.  So unless this biopsy was specificly looking for mastocytosis, they wouldnt see it even if you had that.  If you don't have skin lesions that have hives appear when you rub the lesion, it's highly unlikely you have CM.   If hives appear everywhere when you rub your skin, that's dermatographia. NOT mastocytosis.  dermatographia is a common mast cell symptom, it's different from cutaneous mastocytosis in that in CM the hives only appear over the spots on your skin, with dermatographia, the hives appear anywhere.

Did you have a major flare of symptoms shortly after they gave you the iodine for your scan?  Keep in mind, in mast cell patients, radiocontrast dye can cause significant reactions.  My mother has gone into anaphylactic shock from radiocontrast dye.  (only other thing to make her blood pressure collapse like that is her allergy to halibut)

As for the percoset, most mast cell patients can't handle opiods at all.  Even ibuprophen can cause major problems with some.  Perscription pain killers and mast cell disease often conflict with each other.  Me and my mom both can handle opiods to an extent.  They cause severe itching for both of us, but that's better than many others can handle.  This is with percocet, lortab, whatever.  Anaphylaxis with opiods isnt that uncommon for a mast cell patient.

Remember, anytime your blood pressure drops, you should expect tachycardia.  your drop in bp requires your heartrate to increase to maintain oxygen to the brain.   while I realise you are immediately thinking of your heart as the cause, (I probably would too with Marfan's) know that the drop in blood pressure is caused by the dilation of your blood vessels, NOT anything your heart does, and the tachycardia is a direct response to the drop in blood pressure.  This does put a mild strain on the heart, but the heart is NOT the "cause."    If your heart races without a drop in blood pressure, then something else is at fault.  but a rise in heartrate at the same time as the low blood pressure is typical of shock.   While cardiogenic shock IS a thing, before you assume that, it's usualy caused by a severe heart attack, and you would already be dead by now if that was the cause of your shock.

9

for some reason, my reply is still awaiting moderation. =/  I suspect because I added a couple links.  the Gist of it is this:  When your blood pressure drops, and your heartrate increases, this is called shock.  it's typicaly NOT your heart causing it.  (google medical shock)  It's far more likely anaphylaxis than anxiety causing it.  (anaphylactic shock is a common symptom of anaphylaxis)  the difficulty swallowing, breathing, sweats and hives all scream anaphylaxis, NOT anxiety,  but the real kicker is the angioedema. (the swelling you get.  google angioedema)  This is a common anaphylactic symptom, but NOT an anxiety symptom.  there is SOME information out there trying to claim that anxiety can cause angioedema, but ithese are not medically substantiated, and they are unlikely to be accurate, and highly likely in my opinion, to be cases that are misdiagnosed.   MCAS is a newly recognized disorder, so any cases prior to 2007 would be impossible for them to take MCAS into account, and most cases after 2007 still dont, as most doctors havnt heard of MCAS yet.

As for the skin biopsy.  unless you have cutaneous mastocytosis, and they biopsied one of your skin lesions, and were specificly looking for mastocytosis, there is pretty much a zero percent chance they would see anything. and the odds of mastocytosis are like 1 in 200.000 people.  don't count on anything mast cell releated being discovered by a skin biopsy.

 

10

One of the biggest mast cell disorder reaction signs that it isnt anxiety induced is that Ive had a full on mental panic attack and it felt nothing like when I took the aspirin or the morning after iodine contrast. The problem now is how to get tested for this so i can get the right diagnosis so I can stop getting the whole ucla medical system treating me like im an anxiety case. Im hoping that I might get some doctors at the eds vegas convention in september to take give me some directional guidance. Its extrememly frustrating when people around me keep insisting its all in my head when the daily symptoms of hot flashes and throat swelling occurs with the sinus block and neuropathy. I guess thats when I lose it and the anxiety actually happens. Its like everyones silencing me because im a victim of a single persons misdiagnosis just because they happen to be a doctor and a heart doctor for that matter. By the way the only thing the anxiety meds have done is make me break down emotionally more and gave me this nervous twitch in my arms. What doctors should I go to in order to put me on the right track? I cant rely on the system anymore because of that one misdiagnosis that pops up everytime someone pull up my account. I feel like that guy thats been falsely accused and found guilty for a heinous crime I didnt commit. Since then people blame me for looking for help and tell me to blindly take the anxiety meds and shut up. It really makes me want to die at times because I feel like I cant get out and living quality is like hell. Thanks for clearing up my symptoms it really helps me get a better grasp of the differences between the two. I just wish that society didnt value a doctorates like the word of god, indisputable truth. Is it possible for me to go back to how I was before the initial activation or is my life just alot more of how its been? In other words can I make the mast cells calm down and stop degranulating all the time? At least I know whats wrong with my body now its just a matter of trying to get the system to see it somehow. 

11

Yeah, the reaction after idodine contrast is pretty strongly suggestive of a mast cell condition.  My mother needed epinephrine the one and only time they gave her iodine contrast.  immediate anaphylaxis.  

It's possible to reduce your symptoms.  Everyone responds to treatment differently, so keep that in mind.  Part of it depends on how many triggers you have, and what they are. as you NEED to avoid them. (hence the start keeping a food journal and write down everything. seriously everything you can, not just food.)   Part is the antihistamines, and mast cell stabilizers. (cromolyn sodium) and probably monoleukast etc.  *shrug*  how much reduction you see depends in part on how well you can identify what you need to avoid.  google "low histamine diet"  a lot of people notice a huge benefit from that as an example.   Again, I'm wayyyyyyy better than I was a year ago.  but I still have issues.  however they are much much more managable and a fraction of what they were a year ago.  If I start to be bad, and cheat a bit, I pay for it though. So yes, you can get a lot of your life back, how much though, depends as much on you as on your doctor.  you can't just take pills and have this go away. it does require lifestyle changes to avoid triggers for most mast cell patients. 

12

Would you know what kind of test and doctor for mast cell issues? Is there anyway to tell if I have mast cell activation or mastocytosis from the symptoms? Id go and get a bone marrow biopsy but I rather not if it can be helped. Its just im not really in any position to ask any of my doctors for anything. I couldnt even get a simple cbc from my primary care doctor cuz i have to prove im not still suffering from anxiety. Its hard for me to tell any doctor anything nowadays without getting the psycho somatic stamped on my head. I do alot of research about medical stuff but its not cause im paranoid its because i get sick and the doctors are serious pushing me in the wrong direction. The more I fight it the more im apparently hurting my case. In fact I tried so hard I got sent to a psychiatric ward for like 4 days in june. WORST place to be ever when your already constantly flairing up from the aspirin they gave me. I convince them I had anxiety and promise to take the meds otherwise they wanted to extend my stay to 14 days. I was sent there because I begged the ER doctor not to discharge me after taking and aspirin the night before and waking up with a blood pressure of 70 and a pulse of 105 with burning numbing pain every time I was about to pass out. Its been like this for 4 months so Im really careful about the kind of doctors im seeing or what im saying. I will definely keep a log of the foods and other stuff in my life along with my symptoms. Hopefully I can find some reoccurring causes. Thanks for the wisdom its been a big help.

13

The symptoms between MCAS and Mastocytosis are pretty much identical. Keep in mind normal easily tested for allergies can also cause nearly all of the same symptoms. For instance an allergy to corn could easily explain all kinds of random reactions, (including many pills) or as another example, onion or garlic allergy or soy allergy or sunflower are so common as to produce many random times reactions. If you look at any bags of chips, they all list several oils possibly present. So if you are allergic to one of them, you can be fine eating the chips sometimes, but not others, so then it's easy to assume it's something else. If that makes any sense. This is why my recommendation is start with an Allergist as these are by FAR the easiest to test for and rule out.

Mastocytosis is the second easiest to test for. It starts witha serum tryptase test. If your tryptase is normal, then it's unlikely (but still possible) to be mastocytosis. This is the logical first step for MCAS too.

MCAS there are two main test routes. First, you have the tryptase. You get the first tryptase test, drawn when you are NOT flaring badly. Then a second tryptase test when you are flaring badly. I think it's like a 20% +2 increase or something like that. But this requires going to the doctor to get your blood drawn when you are at your worst.

Tryptase can also test for anaphylaxis. As anaphylaxis of any sort will spike your tryptase up for a couple hours. This = hard irrefutable proof of anaphylaxis. So if you can get a Dr to draw blood and send it off for the test during any major flare, you might be able to get them to immediately take you seriously.

The other method is still an unpleasant one. This one requires 24 hour urine collection. You get to carry a jug around to collect ALL your urine for 24 hours. Best done on a day you don't need to go to work, as nobody wants to open the work fridge/freezer and see a jug of pea in it. They test a part of it, and if the urine sample isn't kept cold enough, you can get a false negative. Takes more than one 24 hour collection test to confirm.

Neither MCAS test is fast. Nor are they 100% reliable. Keep that in mind. There is NO official MCAS test criteria from the WHO yet. Some drs believe in tryptase only, some believe in the urine test. There are pros and cons to both.

14

Would you have any idea how to deal with the third spacing issue. Its probably one of the worst symptom I have. Its like I have POTS but seems to be getting worse day by day. my pulse is now like 100 lying down and 110 sitting up. I really cant seem to get it down no matter what I take or do. It makes my neck swell up and my breathing feels like theres water pressing against my lungs. Should I go to the ER for this? I feel like I should but everyone keeps telling me they arent gonna do anything for me. I have made an appointment with an allergist at the end of this month just gotta last that long and hopefully they will give me the appropriate tests. Thanks for the help.

15

So I was able to get a nurse practioner to let me do a triptase blood test and a 24 hrs urine test for mast cell and protein and an allergy test so hopefully I can get some clear answers for some of these issues. Im not sure what I want at this point being ill for 4 months straight without any answers is really horrible but I kinda dont want mast cell issues either. I just want to get better so badly. Either way thanks for all guidance it made it possible for me to even get this far.

16

great! sorry been a bit busy the past couple days.  Good luck with the results!  I hope you get to feeling better soon!

17

I've been going through a similar situation as you -- they wanted to put me on anxiety medication.   I had been diagnosed with anxiety and prescribed xanax ONE TIME in my entire life, at age 29 or 30 -- and the doctor even wrote it was "situational anxiety" (I had a client at work threatening me and stalking me), and once the doctors got a hold of that, all of a sudden anxiety became a potential trigger/cause.  They told me I needed to be on anti-anxiety medications because it would help me not be so anxious when I had acute attacks/anaphalyxis.  They wanted to put me on Valium in the hospital (and did-- until the pulmonologist came back and said I had eosinophilia and eosinophilic asthma, which goes along with mast cell issues apparently.   The allergist still maintains that anxiety makes it all worse, so they tried me on Zoloft for two days and it made the itching worse.  Switched it to buspirone, which I managed to take literally ONE dose of and ended up in the hospital diagnosed with an allergic reaction to it.   At this point, my PCP decided to give me .5 mg of xanax again, twice a day.  I hate the stuff, and it just makes me sleepy and knocks me out, so I only take it  when I feel the burning of histamine release that I know for sure is caused by fear or anxiety.  For reference, I'm on a regular daily dose of anti-histamines multiple times a day -- there's four of them; some are H1 & H2 blockers.   I've done the tryotase tests, but never during one of my BAD flares.  It was only obtained during mild flares both times and was never higher than four or five I don't think.   The range is up to 11, so that's unhelpful.   Hang in there.   You're not alone.  Let me know what you find out.  

18

So I did get my results after tons of horrible waiting and the tryptase blood test came out 3 so its pretty much negative though Ive been having some pretty bad tachycardia and heart palpitations. The urine test for some reason only looked into proteins which came back also normal. I pretty much begged for the histamine test but they put it down for protein. I dont know why I specifically asked for mast cell test. I did get the allergy test back and pretty much negative also except for a few weeds and minor things. The tsh test came back also normal even though i was hoping so hard it would show hyperthyroid because that would just be the best curable explanation I could have for all this but nope. I really have no idea at this point. Ive had 5 ct scans this year and a folder of at least 50 blood test and im sitting on month 5 of these horrible symptoms with no diagnoses except anxiety disorder which funny enough didnt come from my psychiatrist it came from my cardiologist. My psychiatrist actually said he doesnt think its anxiety its a medical issue. Yep pretty much a huge mess and its gotten to a point I have no clue where to look next. I guess i could do a brain mri or a bone marrow biopsy or a spinal tap but its kinda shot in the dark now. Based on my symptoms I was so sure it was hyperthyroidism or mast cell because of the night sweats, the high pulse, the swelling puffy skin on the left side of my neck near the collar bone, difficulty swallowing, the itchy hives that come and go, the burning skin on left neck and shoulder, the burning eyes and increased body temperature that always shows up normal on the thermometer, the prickly sharp pains in my feet and hands and the heat intolerance. Its so systematic and flares like a chemical release. I dont know at this point I just want to stabilize some how but I still cant find the triggers regardless of what im eating or drinking. It just happens regardless or meds or diet. Maybe someone else has went through this or I tested false negative on something.

19

This sounds like mast cell issues to me. I would keep pursuing that path if I were you. Try to get a BMB. I had lots of those symptoms and finally got a colonoscopy and endoscopy. I got the doc to test for mast cell using the special tryptase test, and sure enough I have way too many mast cells in my digestive tract which they call mastocytic enterocolitis. Then I saw a hematologist and she said it's almost surely systemic masto. But I tested negative on my BMB and tryptase. Either way it's mast cell disease. 

Keep using your xanax for symptoms because the mast cell docs believe it helps block the mast cell chemicals that degranulate in finding their home. And that it may keep the chemicals from circling back and causing a second reaction. Many masties use xanax and liquid childrens (alochol and dye free) benedryl during a bad reaction, to keep from going into anaphlaxis. I carry those plus epipens in my purse everywhere.

Another thing to try would be sodium cromolyn (called nalcrom here). It can help a lot of symptoms. Same with Doxepin, an old antidepressant with huge antihistamine properties that can cross the blood brain barrier.

And on a final note, I've been diagnosed with anxiety disorder since I was a kid (many years ago -- now I see that my anxiety disorder symptoms directly correspond to mast cell triggers. It all seems so clear in hindsight, knowing now what I do about the disease. Anyway, keep on searching and fighting! I think you're on the right track even if some of your tests have been negative so far - like I said, all of mine have been too except for the colonoscopy. If I hadn't had that, they would be telling me it was all psychiatric, too!

20

My doctor also thinks there's a correlation between anxiety and flare ups.  Not necessarily that anxiety is the only or primary trigger, but that I possibly get anxious during episodes or anxiety gives me episodes.    I have only observed that once, and it wasn't a flare up that sent me to the hospital.  I was able to control it.  I'm also on xanax.   It's prescribed .5 two times a day, but I only take it when I feel acute anxiety.   I don't have anxiety on a day to day basis where I need it.   They tried me on Zoloft and Buspirone in hopes of alleviating the anxiety during acute phases but I had reactions to both of those -- in line with mast cell issues.  So very interesting that the xanax doesn't make me react.    I also tested normal on tryptase. They are now amping up my hydroxyzine because the doctor has seen me still have reactions to the "scratch tests" where you can basically draw on my skin like an etch a sketch.   It used to occur only during flare ups but lately is a regular occurrence.  I moved from having acute episodes only to more like persistent symptoms.  My hydroxyzine dose is doubled and I go back in three weeks.  I also had a colonoscopy on the 18th; waiting for results.   There's also a lump on my left ankle that is itchy (I scratch myself there at night A LOT) that the doctor wants looked at and possibly get a pathology/histology on, although it is not presenting as a mastocytoma.   I'm pretty sure I had a mild reaction to the anesthesia this time.   I had a sore, itchy, scratchy throat for a few days after, itchy skin, and stomach issues.  But they didn't tune me to my knowledge.   I ate mangos the other night at they made my tongue tingle.  I hope to God I'm not allergic to mangos.  The wheat allergy thing is already killing me, lol.   This morning for some odd reason I woke up with swollen lips.   After almost two months of this stuff, it's just becoming a fact of life and more of an annoyance versus a total disruption.  I am slowly regaining my confidence to eat, be in the heat, and exercise, since those have all been triggers.  

@mystruggles -- you do NOT want thyroid issues.  I know you were hoping that's what it was for the sake of answers but trust me, be happy.  I only have half of my thyroid (I had a nodule and was treated in 2011 for

Thyroid cancer with thyroid suppression therapy from 2011 to 2014).  Your thyroid controls everything and a thyroid that is off will ruin your life more than this.   However, do know that just because your levels are "normal" doesn't necessarily mean your thyroid is functioning properly.  Lots of doctors are poorly versed in thyroid health and use TSH as the end all, be all.  Make sure the doc checks the other thyroid values as well, such as T3, T4, free T3/T4.   I hope you feel better!!!!  I promise you are not alone in this mess.  

Ask to try a hydroxyzine dose.  To my understanding, that can be anywhere between 25 mg and 800 mg safely.  I save the Benadryl for acute episodes and I use the tablets and liquid.  If I feel it's a more severe or rapid reaction, I use the liquid Benadryl.  It's important to vary/stagger because you don't want to take Benadryl on the regular and then build a tolerance to where it doesn't work when you need it.