Difficulty with doctors taking you seriously?
Posted , 2 users are following.
Hi everyone. I'm new here. I have not received a formal diagnosis yet, but am in the testing process. It's a little unnerving because I have virtually all the symptoms and signs.
The "allergy attacks" started on 6/28. I had a ten day span where I had anaphylactic reactions scout four or five times, even without exposure to what we thought triggered the first one, and was in the hospital 8 of those ten days. I even had an anaphalytic reaction to solumedrol, they steroid they use to treat anaphylaxis! I was released on July 8. Following my release from the hospital, I went to an allergist who suspected that I had a mast cell problem and sent me to this specialist about an hour and a half away. He has brought up the mast cell thing as well and is currently reviewing my records and running tests.
I was discharged from hospits on Zyrtec and Singulair at night. The specialist bumped up the Zyrtec to twice a day.
Since being out of the hospital on July 8, I've had to more attacks in this 14 day period. The first I was able to manage with Benadryl. It happened after a kid got into my car smelling like a ash try. I got a bit lightheaded, headache, and that AWFUL burning and stinging sensation all over my body.
The second one started on Thursday of this week. I could feel light burning and tingling but it wasn't unmanageable. Friday, after exercising for a few minutes, when I stopped, the burning and tingling started getting severe. I was also a little short of breath and started coughing. I took my rescue inhaler and Benadryl. After a while I thought I was in the clear. But like two and a half hours later, I was driving and it hit me full on. Chest pain, unbearable burning/stinging, couldn't swallow, getting dizzy. I was taken by ambulance to hospital from the side of the highway. My heart rate was hitting 150s, nauseated, blood pressure extremely elevated.
I overheard the paramedic telling the nurse that besides the Benadryl he had given me a placebo to lower my heart rate to see if I was faking I guess? His words were "to see if it was some kind of pseudo reaction." However when he gave me whatever it was he gave in the IV, I *did* have more burning in my chest. When I get the Benadryl in the IV in the middle of the flair, it often feels like so much pressure in my chest I gasp for air. Anyway the hospital kept me on Benadryl, zofran, Pepcid, and Ativan (to lower my heart rate) and let me go after like five hours instead of keeping me.
I also got copies of my medical records from the two prior hospital visits. I noted on record says I "have a lot of complaints even though I look fine" and another says rule out allergies, anxiety, withdrawals, and that I was drug tested twice. (Negative of course). Between reading that and how the paramedic handled it yesterday, I'm hurt, irritated, and frustrated. This isn't "anxiety" or some kind of psychological response. I'm also afraid to eat anything or exercise now because there seems to be no consisten trigger.
After yesterday, hydroxyzine has now been added to the regiment.
Does anyone have any advice they can give me? This is seriously screwing up my life and I can't live like this. 
1 like, 3 replies
CodyJ azmia
Posted
Azmia,
Although I cannot claim to be any expert in this area, I can certainly relate as I first began experiencing similar symptoms about 3.5 years ago. A little over a year ago the reactions became more and more frequent and the result of the steroids, antihistamines, epinephrine and all other medications the ER doctors were pumping into me nearly claimed my life. I had one of the admitting physicians at the hospital send me home after 3 days and when I said I did not feel stable, was told it was a "Benadryll hangover" and that I would feel better in a few days. The next day I had a cardiac collapse and suffered a stroke while at my clinic for my post-hospital follow-up with my primary physician (had my husband not been so diligent in making me go to the doctor first thing in the morning, I would likely not be here). Needless to say that is what started getting the doctors to really start peeling back the onion on what was driving these anaphalactic reactions. Like you I would go from normal to airway closing at the most minimal of exposures to various triggers (body spray, dairy products, gum, etc).
After seeing a variety of specialsts for the numerous secondary symptoms that developed (Haematologist & Vascular Specialist - pulminary embolism, clotting of the carotid artery; Cardiologist - syncope collapse; Allergy & Anaphalactic Specialist - reocurrent anaphalaxis; Oncologist - elevated lukocytes, white cell and mast cell activation) finally they started to separate the symptoms from the root cause.
Why I am sharing this with you is to say, stay diligent and don't be afraid to say "No" if you feel the medical community is throwing darts blind-folded. I sit here over a year later counting my blessings that I am still here. Fortunately because of the fast action of my primary physician and her team of nurses at the clinic they recognized the symptoms of stroke and cardiac collapse which prevented irreversible effects (other than partial muscle control on my right side). Might I add that I am only 39 years old with no other contributing factors (non-smoker, non-drinker, and active mom of 4 beautiful kids). 6 months ago I was faced with making a decision of how to proceed as my liver and kidney functioning were at dangerous levels, if I proceeded with the course of medicines (steroids, blood thinners, H1 & H2 blockers, etc.) it was not going to be just the anaphalaxis I would have to worry about taking my life, but renal failure as well. With the help of my Haematologist at the University of Minnesota, he recognized the symptoms I was experiencing and shared my medical history with a colleague who specialized in Mast Cell diseases. From there I was put in touch with resources to aid in managing the symptoms (with minimal use of medicines to allow my kidneys and liver to rebound). I wish I could tell you life has been perfect since that day 6 months ago, it has not, but I feel like I have more control and say in the process. The key that I have learned in this whole ordeal is keeping my histamine levels lowered, I have done hours of research on maintaining low histamine diet (Mayo Clinic has a great cook books and dietary literature on how to do this), I have also done much in regard to controlling my external environmental triggers as well (I wear masks when in large crowds where perfumes, colognes, or even food smells are much more concentrated). I know you might be envisioning a life living in a plastic bubble, but I promise you it is not that extreme. I feel like I am able to function normally, it's just a much more "clean eating" less fragrant normal. I do still have reactions (typically 2-3/ month), however it has been 6 months since one has sent me to the hospital in an ambulance which is more than I can say a year ago when a small exposure would cause my body to go into a reaction that required IV epi drip and benadryll and a minimum of a 3 day in the hospital. The long term prognosis of my liver and kidneys is still yet to be determined, part of the issue with this disease is that it can cause issues with multiple systems so I often deal with digestive and pulmonary effects, the key is to slow the progression of such effects.
I mostly wanted to write in response to your post to let you know that you are not alone, it may feel that way, and there are those in the medical community who may make you feel as if you have lost your mind, but you have not. You just need to find doctors who know the right questions to ask.
My prayers are with you and I hope that this response proves helpful to you, if only that it reminds you that someone is listening.
azmia CodyJ
Posted
Hi Cody, thank you for sharing. I've had several more attacks since my last post. I ended up spending literally half of July in the hospital and three days out of August so far. I'm having a colonoscopy on Friday to look for mast cell aggregates, and I'm now on FOUR antihistamines at any given time, to cover both H1 & H2 blockers. My PCP is pretty convinced it's mast cell issues. I tried going to the Mayo Clinic here (rather my mom tried dragging me) but they don't have anyone in the Florida office that treats mast cell issues. I've gained a tremendous amount of weight in the past few months as well. if you don't mind emailing me whatever tips/tricks and more info about how and where you got treated I would really appreciate it. This is wrecking my life and now I have anxiety on top of it bc I can't swallow normally (need to clear my throat, whatever) I instantly get nervous I'll have an attack. I'm afraid to eat sometimes and I'm terrified to do exercise or get out of breath.
CodyJ azmia
Posted
Azmia,
I'm so very sorry to hear about your recent hospital stays. I can certainly relate to the stress and anxiety this can induce. I've been in your shoes and still struggle at times with anxiety over the unknown.
In regard to tips on managing I will send some follow up links with low histamine diet suggestions, from the specialist I've seen at the Mayo Clinic. diet can play a major role in keeping your histamine levels lowered. The Mayo has a great list of foods and their histamine ranking, for myself I have gone to a largely vegan diet as dairy and meats tends to be triggers for my anaphalaxis.
In regard to your weight gain, that likely is a result of the treatments they give you (especially if they are using prednisone). I have found that for myself I have now been dropping significant weight due to the clean eating I really need to adhere to, I'll be honest it's not always easy and there are times I venture off the list of recommended foods however the consequences are not good.
One other suggestion my Anaphalxis Specialist at the Mayo in Minnesota recommended was to try and control the airway swelling using an inhaler (Asthmanephrine) this can be found over the counter at your local pharmacy and is a battery operated nebulizer style inhaler. The reason he suggested this as my step one action plan was to try and reduce the need for having to use the epi shot which was taking its toll on my heart. Often when I start getting that tickle/ cough and tongue swelling I will use the inhaler and a dose of Benadryll and this seems to calm my symptoms without having to use my epi shot. I would certainly recommend discussing with your PCP.
In regard to Mast Cell Specialists there are very few that are experts in the field as there is still so much unknown, however being from Minnesota I was fortunate that one of few in the world was located at the University of MN his name is Dr Lawrence Afrin, as of July he no longer practices at the U of M as I believe he has gone independent. He does have a site that might prove helpful to you and your PCP (mastcellresearch.com). The other suggestion I would recommend is seeing a Haematologist if you have not already seen one as that is who first recognized my symptoms and happened to be colleagues with Dr Afrin who began in Haematology/Oncology.
Stay diligent in seeking answers and know that getting a formal diagnosis can be tricky as Mast Cell disease is like a mole as my doctor at the UofM told, it can pop up and reak havoc and then go underground meaning they can do one test and its comes back positive and another could come back negative, it can mask itself in many different ways thus making it hard to catch. For me it was a bone marrow biopsy that revealed the mast cell activation as they thought perhaps it was Leaukemia based on some of my blood tests. Some days I question which is worse cancer or dealing with having unpredictable anaphylactic reactions. This is where I have to remind myself to stay positive, not give up hope and to seek more knowledge on what I can do to take back control of my life. Just remember that stress itself causes histamines to be released and as such will cause various system responses including airway construction, so find ways to relax (meditation, prayer).
I sincerely hope this information is helpful to you. I sympathize with where you are at physically and emotionally, I've had days that make me feel defeated, but now I am focusing on the better days and creating a new normal and trying not to worry about tomorrow until I need to.
Prayers and best wishes to you and please don't hesitate to reach out anytime, even if it's just to have someone listen and understand the struggles you are faced with.
Sincerely,
cody