Is Flushing Part Of Pots Without Mcad?

[summer]

I recently did a trial med change which I had to stop because it caused the return of some symptoms of POTS that I had forgotten I had! The major one was flushing. This happened every evening for 4-5 hours, and I had forgotten how really uncomfortable it is - like a burning in my ears and face. I also got that "internal tremor" feeling again which I had not had for a long time.

Can anyone tell me if flushing can actually just be part of POTS without MCAD, or does it always point to MCAD? Also, it happened each evening. Do those of you with MCAD have more flushing at certain times of the day?

One more question too, why is it that B Blockers are not good for MCAD.

Thank you to anyone who can help.

Summer

[janiedelite]

I have flushing and have tested negative for MCAD. My flushing is a little different than yours, though. It is triggered by stress or just by talking, and is accompanied by chest tightness, chest pain, head fullness, burning of my head and chest, and very high BP. However, since I've been on a combo alpha/beta blocker (carvedilol), I rarely severe episodes of this anymore. My cardiologist was very concerned about my elevated norepi levels on standing, and felt carvedilol would be the best drug to address that. I do take nitroglycerin occasionally during these episodes because the chest pain gets so severe. This also helps somewhat with the flushing, probably because it lowers BP.

I notice more flushing during any change of season, very warm or cool temps, stress, prolonged talking, or exercise. I don't notice a certain time of day provoking flushing episodes.

When I tested for MCAD, Mayo had me do a 24-hr urine test. I've heard from other patients here that it's more accurate to do a 4 hour test, and to try to wait til you have a flushing episode. Then you make sure to void when you notice the episode and then start saving urine. Please, Julie and other MCAD patients, correct me if I'm wrong!

[summer]

Thankful,

Thanks for your reply. I'm really glad to hear that you have had some relief with the carvedilol. The episodes you are describing sound miserable. And yes, different than mine.

I felt like the new med I tried was not really controlling my tachycardia very well.... or maybe at all. It seemed to me that I was tachycardic most of the day and by evening all the sympathetic overactivity resulted in flushing and fatigue. That's just my guess. I don't think it was related to stress or exercise because, if anything, I was taking it easy those days because my new med was not working.

First, I thought the flushing might be a temporary 'adjustment' kind of side effect that would go away, but after 2 weeks, I gave it up and went back to my B blocker (since it was not working anyway). After the second day back on my old med, the flushing went away. Now I feel like my tired, brain foggy "old self" again!!!

Maybe the fact that the B blocker seems to help it indicates that it is not MCAD. I believe that I read that people with MCAD shoud not use BB but I'm not sure why.

Summer

[iheartcats]

I wondered if I had MCAD as I have so many allergies/weird responses. I also get random hives. And I've had flushing. I still don't know for sure, but we're leaning to 'no' at this time.

I do get flushing on occasion and I think it's more a POTS thing for me. Annoying and hot and uncomfortable, but I do get it less now that I'm on my Beta Blocker (proprananol). And my Beta Blocker has made me BETTER. My heart rate isn't racing like crazy at 170 walking around so I can function more.

I hope you find something that works.

[summer]

I wondered if I had MCAD as I have so many allergies/weird responses. I also get random hives. And I've had flushing. I still don't know for sure, but we're leaning to 'no' at this time.

I do get flushing on occasion and I think it's more a POTS thing for me. Annoying and hot and uncomfortable, but I do get it less now that I'm on my Beta Blocker (proprananol). And my Beta Blocker has made me BETTER. My heart rate isn't racing like crazy at 170 walking around so I can function more.

I hope you find something that works.

Thanks. It's so hard trying out different meds because the way I feel can vary anyway so it really is difficult knowing for sure what is working and what is not. Sounds like perhaps flushing can be just a POTS thing and not neccessarily and indicator of MCAD. I really do wonder if the fact that the BB helps and decreases the flushing means that our flushing is not caused by MCAD. Glad the BB has improved things for you. I would have to say the same, overall.

Take care

Summer

[Troy]

I have very severe case of flushing without MCAD. My face is always hot and its been that way for the past 9 years since I developed POTS, Temperature dyregulation is my worst symptom, In that 9 years there was a only dozen times when my face actually went back to normal and felt cool to touch and I was so excited I was running around the house showing my parents that my fever had dropped after many years, course it didnt last

I have my coooling system on everyday, even in winter, and when I'm not I wear a cooling vest and always carry a pump spray water bottle to spray and cool myself down. I have ended up in hospital many times with fevers and hyperthermia and I have been told I have one of the worst cases of temperature problems my Autonomic Specialist has ever heard of, so don't underestimate POTS.

[valliali]

I, too, am a flusher without MCAD. I had never flushed a day in my life, till one day, BAM! That was my first symptom. I spent about a year with the worst flushing and burning; now it is more tame with a beta blocker. My flushing is really only triggered after my body temperature is cold then becomes warm. But during the summer when the temperatures are consistently warm, no flushing at all. When I flush, my body temp. literally does shoot up, into the 100s sometimes. When I am not in a flush, it's around 97. So it's pretty bizarre. I also think mine must be a temperature dysregulation thing.

[summer]

I have very severe case of flushing without MCAD. My face is always hot and its been that way for the past 9 years since I developed POTS, Temperature dyregulation is my worst symptom, In that 9 years there was a only dozen times when my face actually went back to normal and felt cool to touch and I was so excited I was running around the house showing my parents that my fever had dropped after many years, course it didnt last

I have my coooling system on everyday, even in winter, and when I'm not I wear a cooling vest and always carry a pump spray water bottle to spray and cool myself down. I have ended up in hospital many times with fevers and hyperthermia and I have been told I have one of the worst cases of temperature problems my Autonomic Specialist has ever heard of, so don't underestimate POTS.

That's interesting... I don't think I've ever checked my temperature when it happens. I tend to feel really cold a lot of the time (but not when I'm flushed), and have considered that to be a temperature regulation symptom for me. I wonder if both could happen. Thanks for your reply.

Summer

[summer]

My flushing is really only triggered after my body temperature is cold then becomes warm. But during the summer when the temperatures are consistently warm, no flushing at all.

Seems that it is very possible that the flushing I'm having is not MCAD. Sounds like it certainly can be a symptom of "just POTS". You know, this could well be what I'm experiencing too - flushing after my body temp has been cold. I'll have to pay more attention. I'm sure that I do not flush like this in the summer. Could it be related to raynaud's - vasodilation following vasoconstriction?

Something to think about. Thanks for your response to my post!

Summer

[flop]

Hi Summer, others have already answered about flushing being part of general POTS as well as it being part of MCAD.

You specifically asked about beta-blockers and why they are a bad idea in people with MCAD. I think that in general beta-blockers and allergies don't mix well, my allergies were worse when I was on bisoprolol. MCAD is like an allergic response but without true allergy as the attacks happen without an allergic trigger. Severe MCAD and allergic reactions can both cause anaphylaxis (medical emergency). Anaphylaxis is treated by an injection of epinepherine (often an epi-pen or ana-pen). Taking beta-blockers means that the epinepherine injection can't work on all the pathways so might not treat the attack fully. There is no definate rule - each person shpuld have their risk worked out by an immunologist and their POTS physician to come up with an individual treatment plan.

Flop

[juliegee]

Hi Summer, others have already answered about flushing being part of general POTS as well as it being part of MCAD.

You specifically asked about beta-blockers and why they are a bad idea in people with MCAD. I think that in general beta-blockers and allergies don't mix well, my allergies were worse when I was on bisoprolol. MCAD is like an allergic response but without true allergy as the attacks happen without an allergic trigger. Severe MCAD and allergic reactions can both cause anaphylaxis (medical emergency). Anaphylaxis is treated by an injection of epinepherine (often an epi-pen or ana-pen). Taking beta-blockers means that the epinepherine injection can't work on all the pathways so might not treat the attack fully. There is no definate rule - each person shpuld have their risk worked out by an immunologist and their POTS physician to come up with an individual treatment plan.

Flop

Just to add on to Flop's reply. I have MCAD. Before I was DXed, I was prescribed a beta blocker. My symptoms got MUCH worse on it. I even had to use my epi-pen while on the BB's. It initially stopped all anaphylaxis symptoms, but 30 mins later they returned- most likely because the BB prevented the epinephrine from fully working. Very scary. Luckily, I was already in the hospital when my 2nd attack struck.

My allergist says that calcium channel blockers are safer than beta blockers when a patient has severe allergies or MCAD- as far as exacerbating allergy symptoms. Neither is the safest bet.

Julie

[summer]

Flop and Julie: Thanks for answering my question about B blockers. This makes sense and sounds like a pretty dangerous combonation.

It's interesting too, Julie, that the BB actually made your symptoms worse. I know for sure that I do get some improvement with a BB. I'm wondering if there are symptoms that are particular to MCAD that do not happen in POTS. I am prone to rashes, sun sensitivity, random hives (but rarely in bunches). I'm guessing that these things would be more characteristic of MCAD, but I could just have sensitive skin.

Thanks, everyone, for sharing your thoughts and experiences. It's great to have all this "first hand" knowlege at our fingertips. Much appreciated!!

Summer