I've never had most of those symptoms, and I can't remember whether or not you've seen a mast cell expert.  You or your local doctor should probably contact Dr. Akin, Dr. Castells, or Dr. Afrin to find out if this seems like a mast cell degranulation.  If Benadryl doesn't help, then H1 histamine receptors are unlikely responsible, but other receptors and/or mediators could be involved.  Many MC people react to perfumes and other strong scents to varying degrees.

It also sounds as though you think you have heart involvement.  Your doctor should rule that in or out, probably by giving you a 24-hour monitor to wear that will transmit heart activity so they can see if there are any rhythm abnormalities.

If you are "in shock" and your heart is "shivering," you should go to an ER or call 911.  What you describe may be atypical symptoms of anaphylaxis.  Regardless, collapsing and paralysis are serious symptoms that need to be treated by professionals.  It's important for a doctor to see your "reactions" and to document what is happening in your body when they happen.

Thank you very much for your responses. It is a little comforting to me (and I'm very sorry for you) that I'm not the only one that has had these symptoms in the mast cell group or EDS group. I was thinking I may have another problem too but have yet to find it. I'm now convinced it is all from liver enzymes.

In September it lasted for a solid 3 weeks and then took another 3 weeks to calm down some but never stopped. This last episode started 4 weeks ago, my mind cleared up 2 weeks ago from today when I woke up and had started my period. I thought that day, I will be better in a day or so. I recognized the change though I don't remember it ever being so drastic before.  But then I kept having reactions and my body kept hurting so terribly bad for the last two weeks though maybe a little better each day. I'm still having reactions but am so much better. I'm so thankful my mind has been clear the last two weeks. But now I'm a little concerned that I'm going back into the luteal phase of my menstrual cycle within the next few days

There is always another factor to cause an extreme episode and not just the high progesterone. A couple times this year I had tried a new medication. I now have some liver enzyme test results showing faulty genes and a list of medications I should never take. Unfortunately the meds I took were on that list.
But this last episode seemed to be from taking phenol enzymes called TriEnza. They are powerful but I never thought enzymes would treat me like that. Phenols (especially antioxidants) do seem to be a problem for me but it seems that breaking them down better might not have helped much.

I will ride this out with no meds and I don't think it is possible to find a doctor that will have any clue as to how to help me.
These episodes have been going on for 9 years but not like this. Only for the last year have I been going into shock. I don't think shock is dangerous. Not the way I'm talking about. I have had these shocky feelings for decades and my mom has them too. We just start shivering and cant get warm. One time my husband got hot laundry out of the dryer and put it on me - it helped! It just feels like all your internal organs are shivering. I don't think it is particularly dangerous for the heart.

I have had heart monitors (twice - a 24 hour test and a 3 week test) to try to see what was going on. It is dysautonomia. I have the usual PVC, SVT, ectopic beats, mitral valve prolapse... The doctors do not seem overly concerned about it but I go back in to get an ultrasound every 12-18 months to check it. I went early spring this year.

My bad episodes are triggered by illness, meds and some foods. My daily small episodes are triggered by heat, foods, smells, sunlight (even if I'm cold) and chemicals.

I'm on a crazy strict diet right now just trying to get out of this episode. Once I get regulated I can eat many of the foods again. Right now I'm eating no high antioxidant foods (that will be permanent since they cause reactions even when I feel good). Also no spices and have cut regular meats back to only a few times a week but I will eat organic meat more often if I can get a hold of it.  Rice is one of the few foods that doesn't hurt me at all. I can eat some vegetables but have cut out high sulfur foods for now too so that eliminates a lot of options. I am sure they will be fine to put back in my diet in a short time when the convulsions and severe reactions have completely stopped.

This is really hard but I feel like my body will find homeostasis if I give it a break and let it clear my tissue of the meds and 'toxins'. I have Benadryl for an emergency but I'm pretty stubborn and haven't taken any in 3 months now since I'm sure it is what helped to take me down this year to this point. It often takes 6 months to clear the body. I wonder if the enzymes may have helped to speed up the process though I wouldn't have done that on purpose.

Oh BTW, I know my symptoms sound just like porphyria and the doctor is convinced my mom has porphyria but I tested for that and my levels were not high enough for it to be the known types of porphyria.  I am not convinced it was right. Porphyria is a name given to those who have 1 of 8 liver enzymes messed up. There are thousands of liver enzymes that can mess up and they have just not figured them all out yet.

But I did read that they did a study on a cutaneous porphyria group and that they found their skin at the area of the blisters had very high mast cell levels. I don't have cutaneous symptoms except their symptom of nonblistering sensitivity (pain) from the sun and that is also a symptom of mast cell issues.  So I'm thinking porphyria symptoms are likely mast cell symptoms anyway. At least I believe it may be that certain chemicals are being released for that problem and that they are not releasing histamine. I sometimes release histamine and sometimes I don't. I believe that is why I have two types of reactions.

There are two types of porphyria - cutaneous and acute. Acute porphyria attacks the nervous system and causes extreme body pain.