The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Adrenaline rush from MCAS?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Misfit Toy, Sep 21, 2017.

  1. Thinktank

    Thinktank Senior Member

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    I feel there's a connection between certain pro-inflammatory substances like histamine and a rise in adrenalin / noradrenalin.

    Whenever i take a H1 inhibitor during an "hyperadrenergic" episode it calms me down and reduces inflammation.
    When i take a beta blocker it does calm me down but the inflammation stays.
    Using a beta2 agonist reduces my allergic / mcas symptoms.

    So... antagonizing H1 receptors = decrease in adrenalin / noradrenalin? With less histamine binding to its receptors the body senses less need for adrenalin/noradrenalin.
    The same goes for cortisol, low cortisol drives high adrenalin/noradrenalin.
    Please correct me if i'm wrong.
     
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  2. ryan31337

    ryan31337 Senior Member

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  3. Misfit Toy

    Misfit Toy Senior Member

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    So, I am googling everything MCAS and CVID and here I am! It keeps leading me back to my posts. I think this is good if anyone else has similar issues they can google them and up it comes and it may help them and vice versa.
     
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  4. Jasper80

    Jasper80

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    My Body instantlly reacts with Adrenal Ruches. It did all My life and unfortunately in the passt i thought it is something good, because i felt so clear in My Head and Full of Energy. I didn‘t know it was something bad. Now I do, behause My Adrenals are close to failure and i don‘t tolerate any cortison or Adrenal Support, not any mastcellstabiliser. It Really feels like close to Death, without dying.

    Sometimes I take Adrenal grandular and I feel quite fast, that I have more Energy etc. But i react to it. So... what to do? Sometimes i think, i should Force My Self for a Little Marathon and Then the Adrenal Crash and it s done, but it‘s was to unsere.

    Hard when there is nothing left to do.
     
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  5. AndyPandy

    AndyPandy Making the most of it

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    @ryan31337

    I noticed your post about elevated blood pressure.

    I have been experiencing some histamine reactions recently - facial flushing, constructed throat and tingling lips. Then the past day or so I've also had a feeling of pressure in my head during these reactions.

    Tested my BP and it was elevated - 179/80. Has come down a bit since then as the histamine reaction is easing but BP still elevated.

    I might start experimenting with tiny doses of antihistamine. I'm pretty reactive to most meds.

    Just wondering if anyone else has elevated BP with histamine reactions.

    @Gingergrrl I thought you might know something about this.

    Best wishes Andy
     
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  6. ryan31337

    ryan31337 Senior Member

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    Hi @AndyPandy,

    Sounds familiar. We're in the minority but not alone, there are a few others in MCAS groups with a similar hypertensive reaction that I know of.

    I do well with Cetirizine in syrup form, it's OTC. It made me feel like a complete zombie for the first week but the side effects soon passed.

    I would consider a specialist appointment though, best not to self manage if experiencing what sounds like early stages of anaphylaxis.

    Ryan
     
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  7. AndyPandy

    AndyPandy Making the most of it

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    Thanks Ryan

    I'm being very careful and am now carrying antihistamines. I mentioned the histamine reactions to my GP a while back but the BP spikes are new I think. Or more noticeable.

    I'll keep monitoring the situation until my next appointment.

    Best wishes Andy
     
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  8. Misfit Toy

    Misfit Toy Senior Member

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    I just reread this thread and I want to say...this is exactly what happened to me 2 weeks ago. I took Tirosint for thyroid and I had this insane burst of clear brain. It was the best. I thought to myself..yes! But, along with it I had goosebumps, feeling manic and realized, this is a reaction. I went from being dead to flying high.

    I thought it was great but because completely sick and loaded with histamine.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for tagging me and I am sorry I did not get to reply last night. I hope that you are feeling better today, Andy.

    The facial flushing, narrowing/constricted throat, tingling lips, and feeling of pressure in your head all sound like signs of anaphylaxis to me. When I had anaphylaxis (in 2015 and early 2016), I would get the histamine/adrenaline surge but it was my heart rate that would increase and my BP would actually drop. My HR could be in the 60's and within a few minutes of the histamine surge starting, it could jump 100 bpm and be in the 160's or higher. But my BP would always drop and never raise. (I had other symptoms, too, that you did not mention but the throat constriction is the most concerning and was a terrifying feeling).

    I think you should carry Benadryl with you (or something of equivalent strength which for me was Atarax) as an emergency rescue med and also try to get an EpiPen.

    I agree.

    Is your appt coming up soon? The symptoms you described are very concerning to me. Are you able to identify what triggers them or is it random and unpredictable at this point?
     
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  10. AndyPandy

    AndyPandy Making the most of it

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    Thank you @Gingergrrl

    At this stage I think the reactions are due to various foods. Sometimes pretty much straightaway. Other times possibly an accumulation of histamine containing foods where I reach my threshold of tolerance.

    I'm going to work on reducing exposures.

    My HR does go up too during a reaction.

    As a child I was on daily antihistamines due to allergies/hay fever. I've always had multiple sensitivities but since having ME things have ramped up. And more so lately.

    I'm not sure about Benadryl. I recall having it as a child and it made my heart race. I also don't do well on antihistamines.

    I'll ask my GP what he suggests. He was talking about a referral to a specialist if the reactions continued. Which they have. So I'll make an appointment.

    Best wishes Andy
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Since your reactions are triggered by food (or an accumulation of histamine containing foods), can you follow a low histamine diet? There is a ton of contradictory info out there and my MCAS specialist told me to choose one low histamine diet and stick with it. The one I had chosen (which he thought was a good one) was called the SIGHI diet (from Switzerland) and it lists all foods and additives from "0" to "3" and for 1.5 years I only ate foods that were zeros or ones. It listed other "amines" besides histamine and listed if the food contained histamine or liberated histamine from the mast cells etc. It was an easy diet to understand and was free to print out (in English) at the time but now I think you have to pay to join the SIGHI website?

    I don't do well with Benadryl either although I would not hesitate to take in an emergency situation. I took Zyrtec (Cetirizine) as my H1 blocker and ultimately found the Pepcid worked best as my H2 blocker. I tried many things that were epic failures but the first med to get the reactions under control was Ketotefin (a mast cell stabilizer). And my rescue med was Atarax (instead of Benadryl). I also took a lot of natural antihistamines and histamine-lowering supplements but no longer need them (but continue to take Quercetin b/c there is no down-side to it for me).

    I would definitely get the referral to the specialist and even if they are not familiar with MCAS, most doctors take anaphylaxis very seriously and (I would hope) be willing to prescribe the appropriate meds.
     
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  12. AndyPandy

    AndyPandy Making the most of it

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    Thank you @Gingergrrl

    What were the natural antihistamines and histamine lowering supplements that you took?

    Best wishes Andy
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    I took Quercetin w/Vitamin C, NeuroProtek (which has Quercetin, Rutin & Luteolin), and Daosin. Daosin is only helpful if you take before eating (and if not eating food, it wouldn't do anything). Also, at one point Daosin became unavailable in the US but later you could buy it again but exclusively from a company called Umbrellux DAO. But this might not pertain to Australia.

    I stopped taking NeuroProtek and Daosin a long time ago but they were VERY helpful for me when I needed them. I used to take 2000 mg per day of Quercetin but now only take 500 mg. I don't know for sure if I still need it but see no down-side.

    I still take one Zyrtec (Cetirizine), 1/2 Pepcid, and one Ketotefin (2 mg) every day. We are not certain if I still need them but I am not willing to risk finding out that I did and relapsing! I also still take Cortef, which played a huge role in controlling the allergic reactions, but I hope to taper off of it in future. The true test (for me) will be to see what happens when I stop IVIG.

    Hope this helps and not too much info!
     
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  14. Misfit Toy

    Misfit Toy Senior Member

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    @AndyPandy -as simple as it sounds, Vitamin C can be a great way to calm down a reaction. Also, Tri-salts. Baking soda and a few other harmless (to me) minerals.

    Something that has also helped is called, D-Hist by orthomolecular products.

    I saw my MCAS doc here today and he said I must take Zantac twice a day and Zyrtec. That since mine are food related mostly and anything I swallow, to absolutely take Zantac twice a day at 150 mg.

    BTW, I am not sure I told you guys.....Dr. Castells is coming to my town on June 8th. She and Dr. Afrin worked together. She is at Brigham and Young hospital in Boston and people go to her for when they can't take medication like chemo with MCAS. She helps them get on meds that they can't take. She is a leader in MCAS and she is coming to my town and I will go to the meeting and get to meet her.

    I am meeting other MCAS members for dinner the night before, which should be interesting since many of them can't eat! o_O

    I will let you know what she says.

    @Gingergrrl -the MCAS doc here has worked with Afrin. He said that many do not tolerate IVIG or IGG when they have mast cell. Go figure. You do! I don't. :bang-head:
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    I don't know if this will be helpful in any way but I did not do well with Zantac (and took it exactly as you described) for quite a while. I did much better once I was switched to Pepcid and only take a tiny dose of it. I do, however, do very well with Zyrtec.

    This is great news... all of it! I am glad that you will meet Dr. Castells! I have never met her but she is an MCAS legend like Dr. Afrin. And how cool that you will meet other members for dinner. I've never had dinner with another MCAS patient but can imagine the poor waiter/waitress if they are all like me... "Can you please check that there is no yellow dye in the butter and if not, can everything I order be cooked in olive oil and... "

    I have no idea how I tolerate IVIG so well and it put my MCAS into remission. My MCAS doctor says it has happened to many of his patients and I am not alone (but I did not expect it to happen to me). We are all unique snowflakes as you said...

    upload_2018-5-23_23-48-32.png
     
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  16. Misfit Toy

    Misfit Toy Senior Member

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    All I care about is that you do tolerate it and it has helped you so much. I wish it worked that way for me.

    I like Pepcid. I like Zantac, too. I switch it up sometimes and take Pepcid. I do fine with Zyrtec. Some say it makes them very tired. It does not affect me that way. Xyzal makes me so tired and gives me tinnitus. Go figure!
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I tried everything known to man to stop the anaphylaxis in 2015 but somehow, I have never tried Xyzal! Is it new?
     
  18. AndyPandy

    AndyPandy Making the most of it

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  19. Gingergrrl

    Gingergrrl Senior Member

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    No problem and hope you get some answers soon, Andy :hug::heart:
     

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