Does this sound like Mast cell issues/Mastocytosis?

[Gingergrrl]

Hi Gingergrrl - Cardiotoxic hypotension: when a (drug) causes a steady and precipitous drop in blood pressure. It can be deadly if severe enough and not treated. My first one followed some outpatient surgery. As I was checking out I started feeling faint and then unsteady and like I was starting to black out. I was offered a dark place to lie down until I felt better, but offered no further help. No doctor I reported it to afterward ever told me what it was.

@melamine Thank you and I was not familiar with this term. Do you know how low your BP actually went after the surgery or the other incidents with meds, dental work, and going to the ER? Does your doctor recommend anything specific that you can do to avoid this happening in the future (if you need surgery or dental work?)

In my case, I keep having weird reactions to things that at the first treatment or dose seems neutral or even helpful but by the 2nd or 3rd treatment, I have horrible side effects and in the case of IV saline, had to get rushed to the ER for flash pulmonary edema. It is almost as if after 1-2 tries of something of something, my body finds a way to reject it and this week it started to happen with certain foods.

But I am not sure if any of this relates to mast cell disorders or another process is going on? I've never had a rash, hives, or the skin symptoms that seem to be part of this diagnosis.

 

[melamine]

@melamine Thank you and I was not familiar with this term. Do you know how low your BP actually went after the surgery or the other incidents with meds, dental work, and going to the ER? Does your doctor recommend anything specific that you can do to avoid this happening in the future (if you need surgery or dental work?)
In my case, I keep having weird reactions to things that at the first treatment or dose seems neutral or even helpful but by the 2nd or 3rd treatment, I have horrible side effects and in the case of IV saline, had to get rushed to the ER for flash pulmonary edema. It is almost as if after 1-2 tries of something of something, my body finds a way to reject it and this week it started to happen with certain foods.
But I am not sure if any of this relates to mast cell disorders or another process is going on? I've never had a rash, hives, or the skin symptoms that seem to be part of this diagnosis.

@Gingergrrl - Your symptom development sounds like the kind of increasing sensitization associated with allergy development, and the pulmonary edema sounds like it could be dangerous.

I don't believe that "classic" signs off allergic intolerance are always useful in making a diagnosis, but my impression is that most doctors and even many specialists don't understand less classic presentations, and may not be interested or qualified enough to investigate. If after researching mast cell disorders you think it is worth pursuing, I would recommend seeing a sub-specialist rather than a general allergist, at least for a second opinion if you think your symptoms fall into a less than typical class or are not happy with the first evaluation.
With the exception of dentists, various doctors I've seen over the years have more often been as uninterested in this symptom as every other. It's also one of the lesser ones on my long list, and one that I can at least do something about, so I hadn't pushed it.

 

[Gingergrrl]

@Gingergrrl - Your symptom development sounds like the kind of increasing sensitization associated with allergy development, and the pulmonary edema sounds like it could be dangerous.

I don't believe that "classic" signs off allergic intolerance are always useful in making a diagnosis, but my impression is that most doctors and even many specialists don't understand less classic presentations, and may not be interested or qualified enough to investigate. If after researching mast cell disorders you think it is worth pursuing, I would recommend seeing a sub-specialist rather than a general allergist, at least for a second opinion if you think your symptoms fall into a less than typical class or are not happy with the first evaluation.

With the exception of dentists, various doctors I've seen over the years have more often been as uninterested in this symptom as every other. It's also one of the lesser ones on my long list, and one that I can at least do something about, so I hadn't pushed it.

@melamine Thanks for your feedback and I feel that I am having some kind of increased sensitization lately to different treatments and food although from reading more, it doesn't seem to be a mast cell disorder per se. I have Zyrtec so I guess if it gets really bad, I can take one in the future.

The pulmonary edema was a horrible reaction to one liter of IV saline and I can't find anyone else out there who has had this experience. Luckily it is over (and I know it has nothing to do with mast cell disorder) but it was another example where my first treatment was great and by the third my body had find a way to make the treatment no longer work and the reaction could have been fatal. It's like my body finds a way to go back to this weird set point or homeostasis except that it is wrong!

 

[melamine]

but it was another example where my first treatment was great and by the third my body had find a way to make the treatment no longer work

I know what you mean about something seeming to help initially, only to cause seriously new symptoms a day or two or a treatment or two later. Is it possible your bad experiences with the saline IVs might have been due to bad judgment by whoever ordered or administered it? That could explain not getting an adequate explanation:

"Inappropriate administration of intravenous fluids — either the incorrect volume (too much or too little) or the incorrect type of fluid — is a significant cause of patient morbidity and mortality." https://www.mja.com.au/journal/2008...problems-associated-intravenous-fluid-therapy

 

[Gingergrrl]

@melamine

I know what you mean about something seeming to help initially, only to cause seriously new symptoms a day or two or a treatment or two later.

This seems to happen to me a lot lately and I don't know why.

Is it possible your bad experiences with the saline IVs might have been due to bad judgment by whoever ordered or administered it? That could explain not getting an adequate explanation:

It is so hard to know but as far as I can tell, everything was administered correctly. It was one liter of normal saline each time and the horrible reaction happened the third time. I don't want to get this thread too off topic but all my weird reactions to things lately made me think about the mast cell stuff. It also scares me if I am ever in a situation where I need to have surgery or get saline, what I will do since my reaction was not like a normal person.

"Inappropriate administration of intravenous fluids — either the incorrect volume (too much or too little) or the incorrect type of fluid — is a significant cause of patient morbidity and mortality." https://www.mja.com.au/journal/2008...problems-associated-intravenous-fluid-therapy

Thanks for the link and it was scary to read it and know that many people probably have died from fluid overload and I was very lucky that I was able to recover from it.

 

[melamine]

@Gingergrrl - at least if you ever need surgery now, you can request that the problem you experienced previously be noted in your record so that extra precautions can be taken.

 

[acrosstheveil]

let me know if anyone ever finds a solution to this. I would love to go visit friends and travel again without fearing for my life due to reactions.

 

[rosie26]

Cardiotoxic hypotension: when a (drug) causes a steady and precipitous drop in blood pressure.

This makes one feel 120 years old. Thanks, I didn't know it was called cardiotoxic hypotension. It feels so bad - this is what scares me about trying new things.