gjensen Posted October 9, 2014 Report Share Posted October 9, 2014 I wanted to bring this topic back to the surface. I suspected a mast cell component to my illness early on. Over time I became skeptical and dismissed the idea. My first complaint becoming sick was a sore throat, and trouble swallowing. I only went to the doctor once I could not eat. It was the first time going to a doctor in my adult life. Little did I know what was coming. I was diagnosed with GERD and put on PPIs. As they upped the dosage, I got worse. I constantly had what I know now is post nasal drip. I did not know that then. I did not tolerate PPIs at all. Along the way I reacted poorly to medication after medication. Often the reaction was rather severe. I only tolerated Clonidine. Recently, I have been on a calcium channel blocker. I noticed some post nasal drip upon taking it but I had no severe reactions so I tolerated it. It has gotten worse and worse. I have had a prescription for Ativan and Valium. With ongoing spasms I trialed them to "keep everything calmed down". Ativan did not help the spasms, but it did keep me calm. Then I started having reactions to it. Itchy watery eyes, post nasal drip, itchy sore throat, trouble breathing etc. I tried Valium and it did the same thing. I had a few breathing spells taking the calcium channel blocker when it would first kick in. Then it got bad. I dropped the dosage and it is more tolerable. It can still be a problem. The post nasal drip is ongoing and a lot of it. For a long time I did not recognize what it as because it drains into my mouth and not my throat. I have had bad reactions to 8 out of 10 medications that I have tried. Even Claritin that I did well with before, now I seam to be allergic to. An antihistamine of all things. Interesting enough, the reactions are short lived, but the post nasal drip and sore throat does not go away. I am going to try Benadryl in a little bit. I was going to see an Allergist. Is that a waste of time? Quote Link to comment Share on other sites More sharing options...
Jon6945 Posted October 9, 2014 Report Share Posted October 9, 2014 I am unable to comment on the mast cell issues. Don't know much about this but I wonder if it is a problem I am suffering from as well and hope to get around to testing or med trials for it.What I would say from reading your post is it is actually a good thing you were allergic to the benzos. I do not recommend taking these under any circumstances as I think it will cause many more health problems for you in the long run. I personally believe benzos are the most dangerous drug on earth and in many cases the damage they cause is irriversible. Quote Link to comment Share on other sites More sharing options...
blueskies Posted October 9, 2014 Report Share Posted October 9, 2014 Hi gjenson,from my experience it sometimes is not the actual drug that can cause mast cell activation, but one (or more) of the excipient ingredients . It can be the drug, of course but not always. I have found some fillers and colorings to be problematical. The excipient ingredients in the same type of pill can be different from one manufacturer to another, I have learned.I want to want to make clear I am not a doctor or chemist - this is just a bit of what I have learned about mast cell overaction in regards to myself.I have an allergist and she has been extremely helpful over the 10 or more years that I have seen her. She was that good that she was the one who suggested I also see another spcialist she knew of. I did, and that specialist was the one who diagnosed me with POTS and ERYTHROMELAGIA 8 - whoops its 9 now years ago, now. I tend to lose track of time passing. Until I look into tge mirror and see my getting older face, I have developed many allergies over the past 12 years. I also have adverse reactions which can be painful and nasty but so far, not thought to be life threatening. I have not developed an allergy to an antihistamine - knock on wood. I have read about it happening, though. Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 9, 2014 Author Report Share Posted October 9, 2014 Thank you Blue. I do not doubt at all that misc. ingredients could be problematic. I have never switched manufacturers. My reactions have been upon trialing the drugs originally or later without switching. I have an appointment with an allergist in a few weeks. I figured that I would start there. I am happy to hear that you were treated well by yours. I am concerned about having trouble with the calcium channel blocker. I do not know of any other options to deal with my coronary spasms. Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 9, 2014 Author Report Share Posted October 9, 2014 I am unable to comment on the mast cell issues. Don't know much about this but I wonder if it is a problem I am suffering from as well and hope to get around to testing or med trials for it. What I would say from reading your post is it is actually a good thing you were allergic to the benzos. I do not recommend taking these under any circumstances as I think it will cause many more health problems for you in the long run. I personally believe benzos are the most dangerous drug on earth and in many cases the damage they cause is irriversible. I am no fan of benzos, but I am no fan of coronary vasospasms either. Heck I am no fan of medications at all. LOL. Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 9, 2014 Author Report Share Posted October 9, 2014 I apologize for the misspelled title. I did not see how to make the correction. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 10, 2014 Report Share Posted October 10, 2014 I don't know about mast cell problems either. But I've had on and off swallowing problems for 12 ys. Who knows why-it's very complex w an autonomic component, too. But when you are having trouble swallowing, you can go in and swallow drinks w a tracer in front of some X-ray (or whatever) machine to see where exactly you have the problem. When I was experiencing MS like symptoms a long time ago, it was the back of my tongue not pushing food back. Most often these days, my epiglottis doesn't trigger and I choke/burp on water (!). The doc said it was usually seen in 70 yo; never mind I'm in my 40s..Good luck! Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 10, 2014 Author Report Share Posted October 10, 2014 I don't know about mast cell problems either. But I've had on and off swallowing problems for 12 ys. Who knows why-it's very complex w an autonomic component, too. But when you are having trouble swallowing, you can go in and swallow drinks w a tracer in front of some X-ray (or whatever) machine to see where exactly you have the problem. When I was experiencing MS like symptoms a long time ago, it was the back of my tongue not pushing food back. Most often these days, my epiglottis doesn't trigger and I choke/burp on water (!). The doc said it was usually seen in 70 yo; never mind I'm in my 40s.. Good luck! Thank you. There is more to my swallowing than this topic. I have had an abnormal and normal swallowing test. For this topic and the swallowing issue I have the most of now is a sore raw throat that I presume is from excessive post nasal drip. It makes my troubled swallowing worse. LOL. I have went from being careful to struggling to do much at all. Quote Link to comment Share on other sites More sharing options...
corina Posted October 10, 2014 Report Share Posted October 10, 2014 I fixed the title for you gjensen (it's something only moderators and admins can do). Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 10, 2014 Author Report Share Posted October 10, 2014 I fixed the title for you gjensen (it's something only moderators and admins can do). Thank you very much. Quote Link to comment Share on other sites More sharing options...
blueskies Posted October 10, 2014 Report Share Posted October 10, 2014 After I take and swallow a bite of food I have to have a sip of water to feel like the food has gotten down. I'm nearly59 and for the past year ot two I've noticed that i often now have to wash the food down to stop a choking sensation. Sometimes I have trouble getting fluid down - it is a sort of lack of coordination in swallowing. If feels like muscls in my throught are out of sync or something. So far it hadnt stopped me eating - often eat too much but food i chose now is softer. Eat way too much of homemade icecream (it sort of slides down the throat) when I'm having a very tired day and dont want to be bothered by the whole ' having to think about act of eating' while I am doing so.blue Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 12, 2014 Report Share Posted October 12, 2014 Hi Gjensen,I bumped up a post for you. Dr. Afrin is an expert in this field. One of dinet members has taken their son to this doctor and I think there may be other members that have seen this doctor. It is a long paper but worth the reading time. Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 12, 2014 Author Report Share Posted October 12, 2014 Thank you Rachel. Dr. Afrin was practicing here in the State that I live in. I understand that he has moved on. I have wondered if another hematologist at that office could be helpful. I wish that I would have pursued this when I first considered this and he was still here. I was working right down the road when I first became sick. I am supposed to follow up with a hematologist for MGUS anyways. Maybe I can get a referral there. Quote Link to comment Share on other sites More sharing options...
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