Does anyone else out there have Sinus Tachycardia from SM?  I have had it now for several years and it seems to be all the time.  When I wake up in the morning and take my bp and pulse my pulse is never lower than 95 and as soon as I get up go to the bathroom its usually about 125 or higher.  Before it would just race when I was having an attack but now its all the time.  It really wears me out.  I have been told by the doc, no physical exersion, yeah right, that sets off the anaphylaxis.  Now just walking my chi's around the block and my heart is jumping out of my chest and I can feel it in my neck.  And I don't walk fast, my chi's only have 3 inch legs.  Also since its summer the heat is here and its really killing me. The winter was pretty hard on me this year too.  I use to do better during winter but no more

Joan said it all so clearly

Sorry you're having this trouble

I developed POTS symptoms after anaphylaxis and had no clue what was happening at first. It seems to stabilize when my reactions stabilize. I am now trying to be as active as I can be within the confines of the extra flushing etc in case it will help my POTS.

I am on H1, H2 blockers, mast cell stabilizers and weaning of steroids.

Do you have hypermobile joints, EDS, or any known connective tissue issues? If so it seems these can also predispose to POTS

When I have my worst POTS flares I try compression hose (though make me itchy), lots of fluids, salt pills, sometimes extra antihistamines but it seems time is the biggest healer of the flares. Eating small frequent meals helps as I would get big flares right after eating. Also resting after eating to let my body digest before taxing it. I would also put a chair in the shower.

I'm glad you're watching your vitals.

Certain foods triggered severe spells for me and I am still sorting this out. If you're rates are getting scary fast or you are feeling chest pain, light headed etc, you should consider being seen by a doc

keep us posted!

Wow I just googled POTS and OMG I have most of those symptoms but most are from my ASM.  But that could definately explain how my heart rate goes way up just from standing up or walking across the room.  Should I see a cardio doc or just let me reg doc know.  I see there is not much you can do about it.

Hi Wendy!

I´m sorry you´re having such trouble with the tachy, it´s indeed troubling!!   I can´t help but think that your doctor needs to speak with some other cardiologists who are more experienced with masto patients to see if there is any way to get this more under control.  It is possible that the combination of your antihistamines is creating issues, or that you´re not on the right combo of meds and they aren´t being effective enough to bring your reacting down.   There are some cardiologists who work with Dr. Castells and Dr. Akin and who are very familiar in working with us masto patients and I think your doctor should speak with them.  

As to your having ASM, I really find that hard to believe especially when you say you´ve been having tachycardia for YEARS.  ASM is the malignant form of masto and they say that the patient normally doesn´t live more than 2 years from the point of diagnosis of ASM.  This form of masto doesn´t usually progress from ISM, but usually comes out of hiding, already angry and aggressive, which is why most patients will die within about 6 months of this finding.  

Unfortunately for us, too many of our doctors don´t know and thus confuse the aggressive nature of our symptoms as an indicator of the stage of our disease and they don´t know that this is one disease which contradicts itself in this manner.    There are enough cases cited in the literature of patients who died from ASM but who never even knew, nor did their doctors know, that they had ASM!!!  The finding was ONLY upon autopsy!!!!   And then you have those masto patients who have the non-clonal MCAS and nary an aggregate of mast cells can they find and these patients take such a beating that they can no longer live normal lives!!   This is something the authorities and researchers can´t figure out yet, for logically those who are sickest should be the ones with the most dangerous and aggressive form of the disease, and this is just not so in masto!    I´m a good example of this contradiction - I am constantly reacting and had three big attacks within the past 6 weeks!  Yet, we´ve hunted high and low and can´t find a single trace of the MC aggregates.  We know they are hidden there somewhere, but my trytpase level is very low and everything indicates that I´m an MMAS patient.  I have an excellent prognosis with this form of masto and yet I take a constant beating in spite of my meds being high doses.   And yet, I can assure you, it has been hard work for my doctors to pin my diagnosis down.  

Wendy, the diagnosis of ASM is fully dependant upon the bone marrow biopsy.  You´ve got to be showing some very serious invasion of the bone marrow of MC aggregates.  Your CBCs must also be compromised as well as having organ involvement like your spleen and lymphnodes.   It´s a very serious diagnosis and demands very serious and aggressive treatment in order to combat it.  

I can´t help but think that perhaps your doctors may have judged your symptoms as the indicator and this is important, for if your doctors are not quite on top of masto, then it may be that you´re going through all kinds of tachycardia because they are also not knowing how to medicate you properly.   The tachy may be controlable, but their lack of practice of treating a masto patient may be the problem here.  

I hope this helps.


Lisa

What Lisa says about ASM has been true, but Midostaurin (PKC412) appears to be changing the prognosis for ASM patients!  Some have been on it for more than 18 months and have a reversal of organ enlargement and many symptoms.  They are active again and enjoying life again.  One patient is said to be down to 3% mast cells in his bone marrow, the last time I heard.

Antihistamines can become less effective over time.  Are you able to use  any other, e.g., Xyzal (for H1) and Pepcid (for H2)?

One more thing....

Bone marrow biopsies can vary widely, depending on exactly where in a bone they take their samples.  If they catch it in between clusters, it could look more normal, and if they go directly into a cluster, the % of abnormal cells can be higher.

We aren't supposed to give out Dr. Akin's phone number here, but if you Google "Cem Akin MD", a number will come up.  Or, Google "Cem Akin Brigham and Womens Hospital