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No diagnosis yet (Read 6040 times)
diamorrow
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No diagnosis yet
01/10/14 at 16:22:36
 
Hello everyone. I have learned more here in a short week than I have from any doctor i have seen so far...here is my story:
I have had allergies all my life but over the past few years I have had what I now understand to be maybe pre mast cell issues.
Labor day 2013 I awoke with burning hands, diarrhea and cold sweats. I got up to go to the bathroom and when walking back I passed out. Husband was able to wake me and my bp was 70/40 I told him to call ambulance. I thought i was having another allergic reaction to who knows what. A Ct in the ED showed blood clots in both lungs. They also treated me for the allergic reaction with benedryl and pepsid. Spent 3 days in the hospital and was put on anticoagulant. I have also had irregular heart rates with the allergic reactions over the past year. So I was hesitant to use the epi pen my regular PC doc gave me.
Went to allergist and she did some preliminary tests and suggested  mast cell....my 24 hour urine HIAA and prostaglandin tests were high...blood trypase normal. She wants to do the urine over again. I had read somewhere that the urine should be cold and stored cold.
I can not figure out any triggers. But I had the summer from hell. So I am wondering if stress could have caused this...I had to clean out my folks house of 59 years, move my dad into an Alzheimers facility and auction off all of their worldly possessions...I ate way too much fast food and drank way too much wine trying to cope. As I have read any/all of the above could have caused the trigger...
I am very confused and concerned with the possible outcome of all this. Every time I itch I worry..allergist has me on Zyrtec, I take the Costco generic and am on a BP med for the irregular heart beats and an anticoagulant for the PE's.
I was a very healthy 59 year old before this all started...
Thanks for reading and your input on tests etc would be greatly appreciated. I live in Ohio and don't really know where to loof for a doctor...have the name of hematologist to try.
Glad I found this place!!
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DeborahW, Founder
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Re: No diagnosis yet
Reply #1 - 01/11/14 at 03:19:20
 
Hi! Suggestions: go get the brand Zyrtec (no generics) and also buy some regular 180 mg Allegra and some 150 mg Zantac (if you have any GI symptoms at all). Right now you apparently do ok with the Zyrtec. You want to be taking the antihistamines twice a day, morning and evening. I take Zantac and Allegra in the morning and Zantac and Zyrtec at 4pm every day. It has helped me immensely. You could easily try adding one of the new meds I mentioned and try that for a few days. If all is well (which it should be), then add the other one in.

You might find that these basic meds help you tremendously as well! I suggest that you also read the "Start here" category for other tips I have posted.
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Feel well!
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Jacahu
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Re: No diagnosis yet
Reply #2 - 01/19/14 at 13:18:25
 
I definitely think stress can bring this all on.  My problems all began during a particularly stressful time in my life and before that was perfectly healthy in my book.  I hope you find answers and help soon:)
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sarahkay1111
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Re: No diagnosis yet
Reply #3 - 01/20/14 at 12:54:09
 
Hi diamorrow!  Glad you found this site--it is what helped me the most as well.  My reactions started at a very stressful time in my life as well, but I had a lot of stress before that too, so who knows?  I was just wondering what b/p med you are on?  I have heart rhythm issues as well, diagnosed with PSVT (very fast heart rate at times).  I tried a beta-blocker and it made me worse.  I now know antihistamines help my heart rate stabilize, so if it's going crazy, a little Benadryl helps me.  I hope you get a lot of your questions answered here and I hope you are feeling good!   --Sarah
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diamorrow
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Re: No diagnosis yet
Reply #4 - 08/07/14 at 15:37:50
 
I have had 4 hot flashing rashes in the last 2 months. I cant figure out anything that could have triggered it.
I still dont have a doctor to follow up on what is causing this. I take 2 benedryl and it all subsides in about 30 minutes.
What type of specialty doc should I see?? Right now I feel little prickly points on my arms but they are not red. I am very frustrated and afraid.
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Joan
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Re: No diagnosis yet
Reply #5 - 08/08/14 at 18:01:35
 
Hi diamorrow,

Welcome to the forum and so sorry to hear you've been suffering.  If you have a mast cell activation problem, being on a regular regimen of H1 and H2 antihistamines should alleviate many of your symptoms.  

There are other meds you can add to address any that the antihistamines aren't covering.  It's pretty much trial and error to get the meds right, both when to take it and how much.

You indicated your prostaglandins were high, so you might want to try taking something to inhibit those.  That would be aspirin or ibuprofen, if you can take one of those without reacting.  If you're allergic to salicylates, then Tylenol might be a better choice.  I have had really good luck with Tylenol for that.  I don't take it regularly, but as soon as I start to feel hot or flushing, I take Benadryl, Pepcid or Zantac, , 1/2 an Ativan, and a Tylenol.  That seems to be a good combination for me.  Tylenol can be dangerous for the liver if taken in high doses or with alcohol, so be sure to be careful not to take too much.

The prickly feeling on your skin is not uncommon in mast cell patients.  The meds will be helpful, but so might adding magnesium to your diet or magnesium salts (Epsom salts) to a soaking bath or foot bath (Soak around 20 minutes in it.)  

Of course before you change or add meds, do run it by your doctor, since you're on prescriptions, too.

If you've had anaphylaxis, it's best not to take beta blockers unless absolutely necessary.  You may find, as mentioned by sarahkay, that the other meds resolve the rapid heart rate problem.  If I'm having a real problem, sometimes I'll take Ativan to calm everything down.

Most people would say that stress is their number one trigger, but foods and environmental triggers are also very common.  Some people start with a low histamine or other elimination diet to figure out what foods are contributing to the reactions.  Doing that for 2-4 weeks and then adding foods back in one at a time, every 2-3 days, will make clear what, if any, foods are causing trouble for you.

Since you're close to the east coast, you can go to see either Dr. Cem Akin or Dr. Marianna Castells at Brigham and Womens hospital in Boston.  They are top experts in mast cell disorders. Another expert is Dr. Lawrence Afrin at the University of Minnesota in Minneapolis, I believe.  Any of those doctors would be of great help to get you a true diagnosis and treatment plan.  I went 16 years without a diagnosis, so believe me when I say it's worth the effort and money to travel to see someone who knows a lot about this.  Good Luck!  Let us know how you're doing!
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Joan
 
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