CFS/ME and Mast Cell Activation Syndrome

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Please help does anyone here have hyperadrenergic pots  POTS or mast cell activation syndrome?

Hello I have been diagnosed with CFS/ME and POTS am wondering if I also have Mast Cell Activation Syndrome. I heard that if you have CFS or POTS it means that you are more likely to have mast cell activation syndrome. I have the symptoms of CFS but also have some symptoms that I don't think are explained by CFS and could be MCAS. I am frequently very itchy and I get flushing sometimes. The flushing is all over my torso, arms, neck, and face. During the flushing episodes I feel horrible and get an increase in heart rate, increase in blood pressure, feel dizzy and nauseous, a tightness in my throat, shaky, and in a panic . These episodes seem to mostly triggered by eating large meals, heat, and walking around, and sex. They also happen when I get anxious and it will start feeling horrible. I have been having a big problem with anxiety but I think that my POTS and possibly MCAS could be causing this. Basically I think that any kind of physical or emotional stress cause the episodes. I should also mention that I think that the type of POTS I have is the  hyperadrenergic POTS and I think that it is causing a lot of the symptoms. I have heard that MCAS can cause hyperadrenergic POTS and am wondering if anyone here has hyperadrenergic POTS or MCAS? DO you guys think that I have MCAS or just hyperadrenergic  POTS? 

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12 Replies

  • Posted

    Hi ME44 i dont know what pots or mcas is but cfs can cause those things well too much moving with it anyways ,,can happen to me. Guava

     

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  • Posted

    Gosh i have Pots. Experimenting with midodrine now. It does help but its just scary as my body is sensative to meds and supplements. Take low doses. But ive never heard of all your stuff. Had to look it up and its way over my head. Lol. Sounds complicated. I dont think i have that kind of Pots but good luck.
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  • Posted

    But i have also been experiencing anxiety ,i think. Its hard to tell if its the Pots and i need more midodrine or what cuz i tried to come off it. For weeks i thought it was my blood sugar till i figured out when i put my legs up on counter it went away. I hate being my own doctor with this crud😭😭😭.

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    • Posted

      Yes I have been having terrible anxiety. I have always been more of an anxious person but ever since I got POTS and ME it has gotten a lot worse. I'm sure I make it worse by worrying all the time but I am also sure that the pots makes it worse. I heard that POTS can make your stress tolerance worse and I think that's what has happened to me. I try to avoid anything that will make me anxious or angry because it will turn on my flight or flight response too much and I will start feeling horrible. I saw that there was someone on this forum who said that his heart rate was 170 and he was in the emergency room throwing up. He said that he was diagnosed with cfs and the doctors pinned his heart rate and throwing up episode on anxiety but I think that he has hyper pots too. I would like to hear how he is doing now. 

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  • Posted

    Hi.. I have Hyper Pots and ME also.  Mast cell issues are common with Pots they seem to go hand in hand. Ive had Hyper POts from the age of 20 after a bout of Glandular fever. Ended up in hospital with heart issues , but back then POTS did not have an official name. Started with Me after the birth of my second child 4 years later. Again did not get diagnosed. Its taken 20 years to finally get diagnosed with both. Just out of interest are you male or female and what is your age?
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    • Posted

      Hi little me! Just curious what heart issues you had. I have ME and POTs also. I experience bad heart pain if i do too much with my upper arms and or have one alcoholic beverage, rarely! But now ,never again. My last episode was too scary. My echocardiogram was shockingly normal!! Thought gor sure it was carditis or myocarditis. Hmmm. Anyway, maybe it is the POTS causing it. I am taking midodrine now and wear compression socks which do help alot with energy for my heart. What does hyperadregenic mean?
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    • Posted

      I am a 21 yr old guy. I have had POTS and CFS since I was 16 after glandular fever and got another infection a year later that made me worse. I never fully recovered but after I got out of High School I felt a lot better for about a year. I think that it was a remission  and heard that this can happen in cfs only for it to come back again.  Since then I have felt badly again and can't do very much. I think that I made myself worse by overdoing things because I did not know what I had. Have you been diagnosed with MCAS? The reason I was asking is because it can be important to know because if you have it then you take take antihistamines to help in addition to your pots regimen. 

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    • Posted

      Hyperadrenergic pots is the less common form of pots and it means over activity of the sympathetic nervous system. In hyper pots people release too many catecholamines, epinephrine and norepinephrine, that causes the body to go in flight or flight mode and feel horrible. It doesn't sound like you have hyper pots. I also have bad heart pain and chest pain sometimes and I heard that pots can cause this.  

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    • Posted

      In hyper pots there is an increase in heart rate and blood pressure when you stand. In the other types of pots there is an increase in heart rate and a decrease in blood pressure. What do you have Tracy? Also if your heart tests came back normal I think that your heart is fine. POTS can cause so many symptoms. 
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    • Posted

      Hi.. they have pretty much explained the Hyper Pots..it is different in many ways to standard pots. Mainly the blood pressure rises on standing, we tend to always have a higher rate ..rather than sudden rising on standing though it does go up about 40 points more when the syptoms are bad, also we tend not to faint, as that is caused by sudden drop in blood pressure, though i will say you do feel really awful and have felt close to fainting many times.  Arms above the head is a huge thing for me, struggle with that more than anything and yes you do get heart pain with all pots, but best to always have it checked as you have done.  My symptoms where constant raised heart rate, crazy high at times when resting, also extra beats missed beats just general tachycardia that was unexplained. Ive been on beta blockers most of my life to try and keep it contained.  I have had periods of time where my symptoms have been under control and have felt ok with only minor blips, mainly caused by hormones issues.
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    • Posted

      I have not been formally diagnosed with MCAS, but you can have all the symptoms and it does not show up in tests as there are many variations of it. My doctor agrees that i have mast cell issues that goes along with both the Hyper Pots and the CFS/ME   You can help your self with diet. i have far fewer issues now i have changed my diet. You need to look into high histamine foods and remove them and replace with anti histamine ones. It really does help , our systems are always on the verge of being overloaded so the slightest little thing can send the symptoms through the roof. Think of it as a cup that is full to just below the rim, it does not take much more to make it iver spill and that is what we live with every day, while a normal person has only a small amount of fluid in their cup so can take many more influxes of fluid before they have an issue.

      As for the the illness cumming and going, i can explain that also.. if you issues where caused by glandular fever then this will reactivate from time to time. When you have an increased viral load or are stressed etc , it leaves the door open for the virus to come out of hibernation and start causing trouble again. Thats what most people dont realise , it never leaves your body , just lives in your nerves waiting for the time that your immune system is under pressure. This in turn causes a relapse of the Pots and CFS i have long periods where my symptoms are very low, then wham its back, usually its caused by a flu or general poor health/stress . Hormones are also a huge factor for women and can bring on bad relapses.

      Food.. try and avoid large meals, eat small amounts often , also try and avoid processed carbs too as they take alot out of the body to try and digest, this will help with bad symptoms after eating.

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  • Posted

    Oh thank god the heart pain is normal. It will stay for days at a time! I swear sometimes its the EBV migrating and just lands there occasionally. (Or beginnings of Parkinson's -my mother had it and her main symptom was back pain. No shaking . Weird) Yes i have low blood pressure all the time and it decreases slightly upon rising- not enuf to cause fainting tho , just fast heart rate sometimes.

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