So where do I begin? I am currently 24 years old, newly married, and a recent nursing school graduate. All my problems started after I got mono my senior year of high school. My Marist symptoms were extreme fatigue, tachycardia (constantly resting over 100, even saw 216 while exercising one day) I also experience near syncope and had a positive tilt table test. After about 10 cardiologists and neurologists and every beta blocker known to man, I finally had a cardiac ablation in June of this year. This is where things went crazy. I am now bed bound, unable to sit up for more than a few minutes without almost passing out. I have been to Vanderbilt and diagnosed with POTS. They also said I have like ZERO parasympathetic tone and overactive sympathetic tone. After returning home from Vanderbilt on a host of new meds (propranolol, florinef for a month now, and now we have added mestinon last week), I had a suprising new episode like never before. I turned blood red in the face with a burning sensation (felt like my face was on fire). Thinking this might be a reaction to my new medication I asked my physician. She said that she wanted to test me for MCAD. After doing research I am terrified that I will get this diagnosis. I have a huge fear of reacting to medications or foods (after a reaction to IV dye and lidocaine). I am awaiting results of a 24 hour n-methylhistamine urine and a tryptase test. I only notice the flushing when I am stressed or emotional. However, I do get tired and tachycardia after meals especially if I eat any carbs (but this has been happening way before any flushing or anything). I have totally restricted my diet but am very scared to eat anything outside a few foods I have deemed "safe" in the past few weeks. I know that beta blockers are said to make MCAD worse but I have been on some sort of beta blocker for almost 5 years now and am just starting to have the flushing episodes.  I have been told that I cannot take antihistamines due to the fact that they decrease parasympathetic tone and I already have pretty much none. Here are my questions while I face this possible diagnosis:

Can this randomly start occurring after years of what seemed to just be undisguised POTS symptoms?

I have been told my tiredness after eating (along with increase in resting HR and slight drop in BP) is most likely just postprandial hypotension, but could it be MCAD related? I can't seem to find a pattern with certain foods, and have never really had an allergic reaction to any foods as far as hives, anaphylaxis, or throat swelling.

Does anyone else deal with autonomic dysfunction (POTS) and MCAD that can suggest what to do if this is a diagnosis and I cannot take antihistamines?

I stay pretty hypotensive constantly since my surgery. I usually stay between 90/60-105/75 no matter what my heart rate is. When I have a flushing episode I tend to be 105/75-120/80. Does anyone get a BP increase with flushing episodes but decreased BP after eating?

Does anyone have POTS and dousing that is not MCAD related or know someone who has?

How do you get the courage to try new foods if you are not sure you will react? Do you have a time Frame you wait for a reaction before you allow yourself to eat it?

Is anyone else bedridden because of this? Or this combined with POTS? I could use some encouragement cause as a 24 year old who went from graduating college, getting married, starting a job to not being able to go anywhere, work, or get out of bed much is not fun!

I try to stay super positive but I am curious if This is a possible diagnosis for me. I enjoy reading all the posts.
I won't go on and on since this is my first post but I appreciate board like this where people are so supportive of each other.

Hi kc and welcome to the forum!  Sorry to hear you're having a rough time.  I will say first of all that I believe you should see a mast cell specialist to rule in or out a diagnosis of MC disease.  There are some things your doctor can rule out first, if you haven't already, like pheochromocytoma and carcinoid syndrome, because those can also cause flushing.  It does sound suspicious for mast cell disease, but an expert is needed to make the diagnosis and additional testing might be needed.

I'll answer what I can of your questions, and maybe someone else can jump in, too.....

Can this randomly start occurring after years of what seemed to just be undisguised POTS symptoms?  Yes.  As you've probably read, belief in a relationship of POTS and MC disorders is growing in the medical community.

I have been told my tiredness after eating (along with increase in resting HR and slight drop in BP) is most likely just postprandial hypotension, but could it be MCAD related? I can't seem to find a pattern with certain foods, and have never really had an allergic reaction to any foods as far as hives, anaphylaxis, or throat swelling.  It could be mast cell related.  Some people react to food triggers with hypotension.  It's not a true allergic reaction, as in an IgE problem, but foods can trigger symptoms often because they contain high histamine or they can directly cause mast cells to degranulate.

Does anyone else deal with autonomic dysfunction (POTS) and MCAD that can suggest what to do if this is a diagnosis and I cannot take antihistamines?  I'm not aware of anyone who can't take any antihistamines, but maybe someone else knows more about that.

I stay pretty hypotensive constantly since my surgery. I usually stay between 90/60-105/75 no matter what my heart rate is. When I have a flushing episode I tend to be 105/75-120/80. Does anyone get a BP increase with flushing episodes but decreased BP after eating?  Yes, some people become hypertensive during mast cell degranulations.  I've experienced it, but sometimes I get hypotensive instead.

How do you get the courage to try new foods if you are not sure you will react? Do you have a time Frame you wait for a reaction before you allow yourself to eat it?  A lot of people test foods by going on an elimination diet.  Most start with a low histamine diet that you can find on this forum.  Sticking strictly to it for a month or more should tell you whether food is an issue.

Is anyone else bedridden because of this? Or this combined with POTS? I could use some encouragement cause as a 24 year old who went from graduating college, getting married, starting a job to not being able to go anywhere, work, or get out of bed much is not fun!  This is why it's so important to see a doctor who can rule in or out a mast cell disorder.  If you look in the doctors section, you might find one in your area.  If not, it's worth it to travel to see one, IMO.

Let us know what you find out, and hope you feel better soon.

Ok have more time now. . .

I can relate to many of your symptoms. I'm so sorry you're having them. There is hope.

Regarding POTS vs MCAS vs who knows what, it depends on which physician you talk to and what their area is. Some say POTS is secondary to MCAS, some say the other way around, some say entirely separate. The main thing is your symptoms are real and the main goal should be improving them keeping all the possibilities in mind.

It sounds as though you've had an extensive medical work up but perhaps have not yet been seen by a mast cell doctor. The best are in Boston and South Carolina. Not sure where you are but you could also have a local doc relay with them to sort out any extra testing you need. Has mast cell related bloodwork been drawn?

Fatigue was one of my earliest symptoms. What happened with the ablation? Did you react to the contrast? My downard spiral began with CT contrast anaphylaxis. I get facial flushing and burning too and you saying that is sure suspicious of mast cell issues though other things like carcinoid and pheochromocytoma need to be excluded. If you can start keeping a log of everything you eat, if you're overheated, exercise, stress level, meds etc and try to pin point any triggers for your issues that might help. I'm still sorting out all of mine, but the big ones are stress, heat, contrast, hazelnuts (IgE), many raw fruits/veg, scents, cleaners, strong cooking smells etc.

I was bed bound when my POTS was at it's worst as standing would induce hypotension and tachy ~150 bpm. I started eating small meals, drinking heaps of water, got out of the hospital, sleeping loads, and doing an elimination diet and slowwly things improved. I tried to walk or stand as much as I could (staying cool) and this built up gradually and now I'm able to hike and walk for hours which seemed impossible for a time. I tried FLorinef for the POTS but reacted. I tapered off steroids and my POTS improved. My mast cell meds were the same for 6 months before my POTS flare and my POTS symptoms improved gradually after that point with no change in my mast cell meds.

The specific details of what causes what are not entirely clear in the science yet, but it is clear that there are many people with issues like yours of orthostatic tachy and reactions to things like I've mentioned. Whether they're all the same thing or not time will tell, but working at treating each of your symptoms, identifying triggers, and treating the whole picture is key. Seeing a doc who sees you as a whole picture can be so helpful for this.

I would seek a second opinion on the "not allowed to take antihistamines" ideally from a mast cell doc or a knowledgeable POTS expert like Dr. Grub. If this were actually the case I would be very shocked. But do keep us posted as it is not my place to tell you anything is impossible. If they end up being contraindicated and it seems like you have mast cell issues (which would be my gut feeling based on how similar we are!) perhaps mast cell stabilizers and antileukotrienes would be something you could try.

Postprandial hypotension could be part of a mast cell reaction or could aggravate your low intravascular volume by diverting it all to your GI tract worsening your tachycardia even without mast cell issues, or both! What helped mine was the elimination diet, eating small amounts, and drinking lots of water.

Yes there are types of POTS that are unrelated to mast cell disease. Most articles however describe flushing as a red flag to suspect underlying mast cell involvement.

Courage waxes and wanes for me depending on the recency of a scary reaction. The elimintation diet and introducing one new thing at a time really helped with this as you can take it at your own pace.

I ssoo sympathize for your life crumbling before your eyes and being stuck in bed. But keep hope and keep fighting. Try to think of your recovery as a long term process so you dont get too frustrated day to day. Most people find ways to get back to leading semi normal lives.

Last thing, I know it's scary but try not to be terrified of this diagnosis. There is something going on with you that needs treatment whether you name it or not. Whatever the specific names are on paper be it POTS, MCAS, or both it doesn't change that you need a comprehensive treatment plan for meds, trigger avoidance and lifestyle alterations to try and get you back to leading a more enjoyable life. "A rose by any other name would smell as sweet" as they say Though, I realize nothing about your current situation is rosy or sweet.

You will get there. You are at the most difficult part...the start. But you're doing the right thing to find out everything that you can and seek expert help.

Oh I forgot to say! My cardiac ablation was an attempt to control my constant tachycardia because beta blockers would not (I was resting 110-120 and would sometimes get up to over 200 with exertion). They did not use contrast during the ablation but I had it before during a chest CT. After the ablation I seemed to do Ok for about two weeks then got to where I could not sit up without almost passing out, much less walk anywhere.  I then went to Vanderbilt on the suggestion of an AWESOME autonomic neurologist in my area and they officially diagnosed POTS. After I returned home from Vanderbilt I started experiencing my first flushing problems.

 I went to vanderbilt this week for my follow up appointment and the doctor ended up admitting me directly from the clinic since I have had no improvements. They did medication trials which SUCkED and pushed my body to the edge. My doctor does not feel that I have MCAS because my flushing is so sporadic (maybe once a week maybe once every two weeks) and my only reactions to foods are fatigue and a slight BP drop which she attributes to post prandial hypotension because of the severity of my POTS. My physician back home was supposed to run a n-methyl histamine on a 24 hr urine they did last time I was in the hospital. Which I got back and they tested for everything under the sun except that! (no pheo, carcinoid etc)  Ugh. I'm not totally convinced my reactions are just that. I have been very carful with what I eat at home but while in the hospital I really ventured out to try to produce a reaction for them to see. I ate things like bacon, cheeseburgers, wheat toast with cream cheese, rice crispies with milk, baked potato chips, chicken and ham sandwiches of which none really produced any of my symptoms I have at home (doesn't it always seem to go that way) not even a flushing episode from all of the stress!! No reactions to alcohol swabs either.  Crazy When the smallest things trigger them at home sometimes. I follow up with my doctor at home next week and will drill him on why the n-methyl histamine was not run when I clearly had a flushing episode from the stress of going through the ER and I feel that they would have shown up then if they were there. I appreciate the responses and encouraging words. I will continue my low histamine diet at home with my "safe" foods until I have been given a definite all clear on the MCAS stuff.  
I tend to react to eating with extreme fatigue and a drop in BP (85/55 range) about an hour after meals. But it is not every meal and not every day despite having a very limited diet. I reacted to contrast dye after all my pots symptoms started but have not had flushing until recently (about 3 years after the dye incident that was stopped with IV Benadryl) My pots is extremely severe. They have diagnosed me with POTS, inappropriate sinus tachycardia, and small fiber neuropathy. Of course they tell me I am deconditioned, to which i want to say "you would be too if you felt like this".  I am just not convinced that the way I feel after eating is all pots related, though it may be because I have to take my medication with food and the meds that drop my HR and BP tend to peak at the same time my digestion would. I just don't know what to think.
For example:. I ate cheese slices and wheat bread in the hospital with no problem, so last night I had toast and a cheese slice for dinner with my meds and did ok. I did the same thing this morning for breakfast and an hour later could barely stay awake I was so fatigued (i felt like i didnt have the energy to breathe) and my BP was 89/58 HR 83 so I had to take midodrine to bring it back up. I am just now starting to feel awake again. Gotta love our bodies sometimes.