Allergic Reaction To Beta Blocker

[Sunshinegirl]

I tried a beta blocker again for the second time in quite a few years. I have a history of angioedema but had more under control these days. I started the beta blocker a few days ago and I am a swollen mess. My throat was somewhat swollen last night and it scared me. This is the rather quick reaction I get to most OTC medication. I have had nothing new except the beta blocker and only ate vegetables to make sure any reaction was not likely food related.

Anyone had this?

[Katybug]

Beta blockers are contraindicated for people with mast cell problems as it causes mast cell degranulation. If I remember correctly, I think you said you might have mast cell issues?

[Katybug]

P.S. My breathing became terrible when I was on a bb (prior to my mcas dx.) I was in a constant state of air hunger.

[Sunshinegirl]

Yes, it is highly suspected that I have mast cell involvement. I was asked to do labs during an attack but the attacks are always so severe that I cant drive or do anything. By the time he gets home, the walk in labs are packed. They tell me they wont be able to get to me before they close. Its a lame excuse. My not so lame excuse is that only a few labs have the stuff it needs and know how to take the blood and store it properly so that the specimen does not degrade. On the occasion I have made it to a lab, I was turned away.

I think I could have been properly dxed years ago if it was not for poor handling of specimens or a more timely arrival on my part.

I had not had too many bad attacks since I started a low histamine diet last spring and live on antihistamines. In years prior I took out all xenoestrogens and many phytoestrogens. The swelling attacks have been more mild and with all that's been going on, its like a "normal" state. Iv been so fed up that I detached from my physical experience because I have felt so hopeless. I think my dr had it in his mind that it was just all in my mind at times.

Also, the high HR and other nerve issues keep clouding the picture. I have maybe 15 symptoms that cascade into one big ball of mayhem, none of which point to any one condition. My dr. admitted that 10 yrs ago when we started this journey that not many knew much about this family of issues that overlap in many cases. Every year or so, I give up then eventually believe in myself and try again. Unfortunately, I think some nerve damage has occurred that cannot be undone.

Like you I am also hypermobile and have weirdly stretchy skin but I don't have strange scars. Do all people with ED have scarring? I have had the majority of my symptoms since childhood except nerve damage and high HR.

[Katybug]

I don't have any scarring issues. I think that is a more prevalent feature for classic EDS (Type 1). Although I can't swear to that.

[Sunshinegirl]

Yes. I just looked it up. That scale of bendiness.. I can do all of that and much more! My father also had a mitrovalve issue and died very early. I think it was sloppy and then he got an infection in it and that's what did it.

With all your findings and treatments, have you been able to work a regular job very well? I find that the allergic reactions to "life" and staying hydrated enough for the POTS makes it very hard. Not responding well to medication is not helping.

I have learned so much from you in such a short time. I cant thank you enough for your patience!

[Psalm 23]

Hello Sunshinegirl,

I'm sorry you are having to deal with such scary symptoms. Katie is correct in that beta blockers are generally contraindicated for those with mast cell issues. While I did not have an angioedema response to the use of beta blockers I did experience such severe episodes of chest pain I felt as if I was having a heart attack. Since we have mast cells everywhere any number of symptoms can be experienced by one with a mast cell disorder. Don't ever give up on believing in yourself. It took me many years to get the correct diagnoses and treatment.

Janet

[Katybug]

No Sunshinegirl, unfortunately I haven't been able to go back to work. I still have 3-4 bad (as in keep my self on the couch or in bed except for food and potty breaks for me and the dog). And of course when those days will happen is unpredictable so I can't give an employer any sort of schedule.

But, this still is an improvement from where I was when I had to stop working. At that point I had deteriorated to the point I was sleeping 20 hours a day and when I was awake I was a shaky mess. I couldn't drive, I sometimes couldn't speak more than one sentence at a time without choking, I was unable to walk my dog at all, and I had to move in with my mom and stepdad because I couldn't meet my own needs....no cooking, cleaning, laundry. They drove me to doctor's appts, brought me food on a tray when I was too weak to walk, and cared for my dog and cats. Now I can usually get 2-4 hours of "useful" time a day. That might only be a doctor's appt that's close to home but it's something. I am back in my house and can manage most things myself although there is always careful planning and I have learned to accept that things may not get done when I wanted or planned them to. I still have to have them drive me to a couple of docs that are 40+ minutes away. I have a fenced yard but I can get my dog out for a walk for 15-20 minutes 2-4 times a week. She's old now so that suits her needs.

I am currently paying the price because my horse is sick (she's old and retired too) and I've been pushing myself to go take care of her daily. I should have talked to my barn manager last week (this is wk 3 of sickness) about paying her or one of the girls extra to do the daily treatments but I've been worried about her. Today I paid the price and crashed badly in the afternoon. I had to call my mom to come over as I was on the edge of fainting and was by myself. She stayed for hours because I was too weak to stand for a while after the worst of it. I think today wouldn't have happened if I had been honest with myself and everyone else about what I could handle.

I also have finally been working with a hematologist and we are finding some strange blood work. I have one test that says I am at risk for not clotting and bleeding out and another that is a gene mutation that puts me at high risk for inappropriate clotting/thrombosis. That is on top of the MTHFR gene mutations and 3 blood tests since Sept showing low Ig counts and elevated lymphocytes. While some might see this as doom, I actually feel like maybe we're finally going to get to the heart of the matter.

I guess that was the long answer. Thanks for listening to all that. My point is, I haven't given up. Each thing we find leads to some treatment that gives some improvement. If that leads to another useful half hour in my day, then I can live with that.

[gjensen]

I reacted horribly to beta blockers. Twice to two different ones. Once was pretty scary. If you suspect, or your doctors suspect a mast cell activation problem, I would not recommend it.

My airway is especially reactive. I do not have visible skin reactions. My reactions are chest, throat, nose, and eyes etc. Only occasionally do I get visible flushing. I do have digestion problems to some food and drugs.

[Sunshinegirl]

Thanks all. I stopped the beta blocker last night and my HR is off the charts again this morning. What can you use to decrease your HR?

I stopped eating and drinking for the most part until this passes. I sip of pedialyte and put a little more sugar in it. Its either that or go to the hospital and get an IV. They don't understand what is going on, so they wont give me one.

I too have only a few good hours a day and several days of the week that are pointless. Some days I want to sleep 20 hrs but I cant even if I need to because of the kids. I don't make any plans anymore. I feel like my bed is my best friend.

I get things done 15 min at a time.

I am about to try to get my student loans erased because I cant work....but this requires a complete dx. I guess I could qualify with untreatable severe IBS. Nothing I have tried to stop this has worked.

I too have funny blood work. Some things are low and others are high.

You are very blessed to have your parents to bring you places.

Thanks for being friends through this journey!

[Psalm 23]

Sunshinegirl I take clonidine and pyridostigmine for tachycardia. For the few who can tolerate it pyridostigmine is very helpful in reducing heart rate and other PoTS symptoms. And of course if you can tolerate it salt and fluid helps especially if IV fluids are not an option. Sounds like you better see your doctor though to be evaluated.

Katie I'm so sorry about your horse being ill. I hope she's doing better. I'm a horse chick as well. I hope your hematologist can figure out what is going on with you. I'm like you in that when abnormalities are detected it means moving in the direction of answers. I hope you've been resting today and letting others care for your horse.

[Katybug]

Hi Sunshinegirl,

We all need all the friends we can get through this...you are welcome but there is no need for thanks. That's what we do for each other. On a different note, they have me on verapamil, a calcium channel blocker, to help with my heart rate as an alternative to beta blockers. It can lower bp but I have not had that problem.

Psalm,

Ha! No rest for the weary....she has lymphangitis as the acute issue. She got it, got mostly better but has had 2 more flare ups. This second one is bad so vet decided to switch antibiotics. They had to be overnighted to my house so I was off to the farm again today. I was feeling better though. In the meantime, we tested her for Cushings as it can compromise the immune system. I wanted to do that last spring and the vet insisted she didn't present as Cushingoid. Now I wish I would have insisted and we probably could have avoided this mess we're in. I got the "look for horses, not zebras" speech. I was standing there thinking to myself, "wrong person for this speech because I can recognize my own kind!" Lol! He's a good vet but he was taught to look for horses and I have learned how to recognize zebras. What can I say? I did work out a plan with the barn manager so i will only be going up there 2-3 days a week and not back to back days. That will help. Anyway, the hematologist said my blood work was "nothing short of strange." She repeated the test and added some new ones. I find out in a couple of weeks. I wonder how weird it has to be to make a hematologist diagnose you as "strange". They see comparatively strange stuff everyday! Take care!