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Well, not exactly new... I joined years when I started working on a methylation protocol.
I have a lengthy history that I won't completely unburden here at once. The big issues lately include advanced joint degeneration (with accompanying bone spurs and compression fracture) in my spine, also in my knees (sans the fracture, but joint instability), glaucoma, cataracts, liver enzymes bumping, chronic GI complaints (Celiac was negative, though I have all the symptoms), labile thyroid (high to low) with multiple nodules (goiter)... asthma & allergies, too. There is more, but I am trying to be sort of brief.
Why I am here: First, it is worth mentioning that my eldest son (#2 of our 8) was killed by a drunk driver 2 weeks before Christmas. I know this plays a role. The few years leading up to that were also incredibly stressful (lawsuits, moving in elderly MIL, 2 kids leaving home... craziness) so whatever reserves I might have had were already spent. We still have 4 kids at home, and are doing all we can to make life as normal as possible for them. It is a struggle most every day. I am shattered, and yet I have no choice but to get up everyday and try to make our lives better for them.
I have a history of multiple allergies since childhood, but pretty much ate what I wanted anyway and just took a daily Zyrtec and Singulair. Things had already been escalating, though, as late last year I had started reacted strongly to *something*... I would wake up, usually after eating out, with puffy eyes, runny nose, sometimes puffy lips. Sometimes I would notice itchiness and irritation the night before, taking some Benadryl helped, but I would still awaken looking beat up. I finally had another allergy scratch test done Aug 2016 by my ENT, who was trying to help me work out my chronic sinus issues and who also monitors my thyroid. I reacted to a LOT more than I realized but one that was popping out was pineapple. I often had a fruity drink on date night and the pineapple wheal was rather large. In between the test and the appt to actually discuss the results with my doctor, I absentmindedly had a mega mai tai. By the time we got home, I was in a histamine mess. Itchy throat, itchy ears, asthma. I took a bunch of Benadryl and then my nightly meds (including Zyrtec and Singulair)... I believe I had some prednisone, too, that I took as well. The next morning I was still quite puffy, too. The lightbulb went off and I visited my GP, who prescribed me an EPI pen.
I did finally get into the ENT and he basically told me that I needed to just really watch my symptoms. He told me not to avoid if I did not seem to react, as the scratch test will sometimes pick up things that aren't "true allergies"... and remember, I reacted to a lot on the test, some things that I consumed regularly with no apparent reaction. He agreed that the pineapple was serious and was glad I had the EPI pen.
My first full blown adult ANA was 18 days after my son's death. I was eating some fried shrimp and hush puppies, driving down the road. My nose was running, I felt congestion and I remarked to my husband that I wish the weather would break (it was rainy) because it made me feel so stuffy. By the time I got home, I felt I needed a breathing treatment, which I started. It was then that I realized I had hives in my mouth and that my throat had begun to close. I told my hubby something was very wrong, to call 911 and I self administered EPI. The ambulance took forever (15+ minutes) and I required more EPI in the ambulance. They also did what I now know is their standard, IV Benadryl and Solumedrol. By the time I got to the ER, my throat was STILL closing and I required a 3rd dose of EPI as well as more steroids (I was at 250 mg+ by then), more Benadryl (over 200 mg), IV Zantac and they gave me some Ativan (I think) to "calm down" because I threatened to get my own extra EPI pen if they didn't bring me more because my throat WAS still closing and they were watching the monitors and not watching me. I choked on an ice chip because I was losing clearance in my throat. I was terrified, I was sure I was about to die and they are watching the frickin monitors telling me to calm down. Ha, no.
Making a longer story shorter, I made an appt with another allergy/ asthma specialist to get another opinion, since "watching myself" wasn't quite cutting it. Unfortunately, I live in a very underserved area and it was 6 weeks to get into him. I was unable to stay off antihistamines long enough to get the scratch testing done again, yet, though. We had a very mild winter, and by the time my appt came, we were in full blown pollen hell here. I reacted strongly the first time to all tree mixes, all grass mixes, dust mites, cockroaches, pretty much
all the "environmentals". This is not new, I have known my whole life I am allergic to these things. I minimize exposure as best as I can, but it is impossible to completely avoid.
On that allergist visit, he did order the adult blood panel RAST as well as RAST to all the "positive" proteins on the scratch test that were not on the standard panel. He also drew a V on my arm with a closed pen while we were discussing possible mast cell disease. I did a raised, red, puffy V on my arm where he did this... weird. He also checked my tryptase and IgE levels. ALL came back negative (less than 10) and my tryptase and IgE were normal. I found this VERY frustrating. Even the shrimp, the blood work, completely negative. I am supposed to get another scratch test in April, if I can manage 5 days off of antihistamines.
My second ANA came just 2 weeks ago. This time it hit as a sudden drop in BP accompanied by a racing pulse. I had been eating Doritos and drinking the first sugared soda (not HFCS) that I had had in weeks... again, EPI, but this time everything went so much faster. EMS was faster, IV meds on board faster, etc. I was released after being observed for a couple of hours and was given a steroid taper. A few days ago, I had a very similar reaction (no known allergic foods consumed) but I checked my BP and it was 204/105... I was too worried about having a heart attack if I tried the EPI. I did the steroid/ Benadryl/ Zantac as I had been instructed and called EMS anyway (my hubby was not here, or I might have had him drive me). In the ambulance, they had a hard time getting my BP, but it read 245/ 110 and my pulse was 140s. I was given more Benadryl and Decadron in the ER, and yet they still called this one a "panic attack". I did find that my K was quite low (2.9) and that it could have caused these symptoms, but you know how quickly we women tend to be labeled as hysterical and anxiety means they don't have to dig deeper. This last one, I felt very dismissed.
So here I am. Dr 1 (who I happened to have an appt with the day after ANA #2) thinks it may be a mast cell thing, but has not offered any new testing to prove that theory. Dr 2 and I did not discuss it further, but I see him again in about a month. Dr 1 gave me a Gastrocrom script, but insurance does not want to pay and it is over $2300/ mo.
After 2nd ANA, I put myself on an elimination diet. I stopped all grains, all the "positive" scratch test allergies and quit alcohol (red wine is my favorite, but I can certainly see times where I have reacted to it, even recently). That was 13 days ago. The "anxiety" episode happened even in light of all of this. I am getting to the point where I am afraid to eat about anything. I have done a lot of reading on HI lately (some here, some elsewhere) and I fit the profile. I am 45, may be perimenopausal and have had a LOT of stress in my life recently. Or is real allergies?
How did you all figure things out? Is there any testing I should be asking for? Help me try to work through some of this, please. I just want to feel better and I want to be able to eat.
Thanks in advance!
I have a lengthy history that I won't completely unburden here at once. The big issues lately include advanced joint degeneration (with accompanying bone spurs and compression fracture) in my spine, also in my knees (sans the fracture, but joint instability), glaucoma, cataracts, liver enzymes bumping, chronic GI complaints (Celiac was negative, though I have all the symptoms), labile thyroid (high to low) with multiple nodules (goiter)... asthma & allergies, too. There is more, but I am trying to be sort of brief.
Why I am here: First, it is worth mentioning that my eldest son (#2 of our 8) was killed by a drunk driver 2 weeks before Christmas. I know this plays a role. The few years leading up to that were also incredibly stressful (lawsuits, moving in elderly MIL, 2 kids leaving home... craziness) so whatever reserves I might have had were already spent. We still have 4 kids at home, and are doing all we can to make life as normal as possible for them. It is a struggle most every day. I am shattered, and yet I have no choice but to get up everyday and try to make our lives better for them.
I have a history of multiple allergies since childhood, but pretty much ate what I wanted anyway and just took a daily Zyrtec and Singulair. Things had already been escalating, though, as late last year I had started reacted strongly to *something*... I would wake up, usually after eating out, with puffy eyes, runny nose, sometimes puffy lips. Sometimes I would notice itchiness and irritation the night before, taking some Benadryl helped, but I would still awaken looking beat up. I finally had another allergy scratch test done Aug 2016 by my ENT, who was trying to help me work out my chronic sinus issues and who also monitors my thyroid. I reacted to a LOT more than I realized but one that was popping out was pineapple. I often had a fruity drink on date night and the pineapple wheal was rather large. In between the test and the appt to actually discuss the results with my doctor, I absentmindedly had a mega mai tai. By the time we got home, I was in a histamine mess. Itchy throat, itchy ears, asthma. I took a bunch of Benadryl and then my nightly meds (including Zyrtec and Singulair)... I believe I had some prednisone, too, that I took as well. The next morning I was still quite puffy, too. The lightbulb went off and I visited my GP, who prescribed me an EPI pen.
I did finally get into the ENT and he basically told me that I needed to just really watch my symptoms. He told me not to avoid if I did not seem to react, as the scratch test will sometimes pick up things that aren't "true allergies"... and remember, I reacted to a lot on the test, some things that I consumed regularly with no apparent reaction. He agreed that the pineapple was serious and was glad I had the EPI pen.
My first full blown adult ANA was 18 days after my son's death. I was eating some fried shrimp and hush puppies, driving down the road. My nose was running, I felt congestion and I remarked to my husband that I wish the weather would break (it was rainy) because it made me feel so stuffy. By the time I got home, I felt I needed a breathing treatment, which I started. It was then that I realized I had hives in my mouth and that my throat had begun to close. I told my hubby something was very wrong, to call 911 and I self administered EPI. The ambulance took forever (15+ minutes) and I required more EPI in the ambulance. They also did what I now know is their standard, IV Benadryl and Solumedrol. By the time I got to the ER, my throat was STILL closing and I required a 3rd dose of EPI as well as more steroids (I was at 250 mg+ by then), more Benadryl (over 200 mg), IV Zantac and they gave me some Ativan (I think) to "calm down" because I threatened to get my own extra EPI pen if they didn't bring me more because my throat WAS still closing and they were watching the monitors and not watching me. I choked on an ice chip because I was losing clearance in my throat. I was terrified, I was sure I was about to die and they are watching the frickin monitors telling me to calm down. Ha, no.
Making a longer story shorter, I made an appt with another allergy/ asthma specialist to get another opinion, since "watching myself" wasn't quite cutting it. Unfortunately, I live in a very underserved area and it was 6 weeks to get into him. I was unable to stay off antihistamines long enough to get the scratch testing done again, yet, though. We had a very mild winter, and by the time my appt came, we were in full blown pollen hell here. I reacted strongly the first time to all tree mixes, all grass mixes, dust mites, cockroaches, pretty much
all the "environmentals". This is not new, I have known my whole life I am allergic to these things. I minimize exposure as best as I can, but it is impossible to completely avoid.
On that allergist visit, he did order the adult blood panel RAST as well as RAST to all the "positive" proteins on the scratch test that were not on the standard panel. He also drew a V on my arm with a closed pen while we were discussing possible mast cell disease. I did a raised, red, puffy V on my arm where he did this... weird. He also checked my tryptase and IgE levels. ALL came back negative (less than 10) and my tryptase and IgE were normal. I found this VERY frustrating. Even the shrimp, the blood work, completely negative. I am supposed to get another scratch test in April, if I can manage 5 days off of antihistamines.
My second ANA came just 2 weeks ago. This time it hit as a sudden drop in BP accompanied by a racing pulse. I had been eating Doritos and drinking the first sugared soda (not HFCS) that I had had in weeks... again, EPI, but this time everything went so much faster. EMS was faster, IV meds on board faster, etc. I was released after being observed for a couple of hours and was given a steroid taper. A few days ago, I had a very similar reaction (no known allergic foods consumed) but I checked my BP and it was 204/105... I was too worried about having a heart attack if I tried the EPI. I did the steroid/ Benadryl/ Zantac as I had been instructed and called EMS anyway (my hubby was not here, or I might have had him drive me). In the ambulance, they had a hard time getting my BP, but it read 245/ 110 and my pulse was 140s. I was given more Benadryl and Decadron in the ER, and yet they still called this one a "panic attack". I did find that my K was quite low (2.9) and that it could have caused these symptoms, but you know how quickly we women tend to be labeled as hysterical and anxiety means they don't have to dig deeper. This last one, I felt very dismissed.
So here I am. Dr 1 (who I happened to have an appt with the day after ANA #2) thinks it may be a mast cell thing, but has not offered any new testing to prove that theory. Dr 2 and I did not discuss it further, but I see him again in about a month. Dr 1 gave me a Gastrocrom script, but insurance does not want to pay and it is over $2300/ mo.
After 2nd ANA, I put myself on an elimination diet. I stopped all grains, all the "positive" scratch test allergies and quit alcohol (red wine is my favorite, but I can certainly see times where I have reacted to it, even recently). That was 13 days ago. The "anxiety" episode happened even in light of all of this. I am getting to the point where I am afraid to eat about anything. I have done a lot of reading on HI lately (some here, some elsewhere) and I fit the profile. I am 45, may be perimenopausal and have had a LOT of stress in my life recently. Or is real allergies?
How did you all figure things out? Is there any testing I should be asking for? Help me try to work through some of this, please. I just want to feel better and I want to be able to eat.
Thanks in advance!
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