Why Isn't It All The Time?

[julieph85]

I know some of us do have OI all the time and are bed ridden etc, I've been there myself so I'm with you 100% since I have seen improvement since my initial onset during pregnancy, I've noticed my OI is not every time I'm standing, and there seems to be no rhyme or reason to it. I feel immediately short of breath and dizzy upon first standing, every time I stand up. It is also worse the longer I've been sitting or laying. However it stops after the first 30 seconds and my HR returns to semi-normal levels (80's). At that time I would consider myself to not be experiencing OI. However there are plenty of times during the day that I have trouble standing and my HR stays in the low 100's and I'm short of breath. If it is a true dysautonomia, why isn't it all the time? I would say 50% of the time I'm standing I'm OI and 50% feel almost normal. What gives?

[Mytwogirlsrox]

I don't know, but I wonder the same. I generally have a large increase when standing, then normalize to 85 ish after 10-20 seconds ...

[hippychic258]

Julie, were you ever bedridden?

[Birdlady]

Yes sometimes I am normal and I've asked myself this same question too! Usually my HR's are significantly lower when I'm tired or when it's near the end of the day. But then other times I have 100bpm increase when I stand, so go figure that one out!! hahah! I don't even feel faint when I stand though, so who knows what is going on in my body. I wish I could hook myself up to a machine, like what they do for cars when the check engine light comes up, and it tells you exactly what is going on! lol

[HopeSprings]

Are you on any medication? Could it correlate with timing of medication wearing off or something? Has it always been like this... could you be getting better?

[yogini]

It could be anything like fluid intake, how much rest you had the night before, what you ate, the weather, etc. I gave up trying to figure it out. Up and down symptoms are not unusual, though!

[misstraci]

Hey, mine is come and go as well. I can be looking and acting normal one moment and then the next moment, i'm standing there about to pass out. I do not understand either. I'm not sure what is happening on that moment i feel fine as oppsed to the one i feel faint. I like what Dana said about hooking up to something like the car machine that can tell us "check engine" but for people symptoms!!

[MomtoGiuliana]

My symptoms, tho typically mild, come and go as well. Typically my symptoms are the worst in the AM and I feel best in the early evening. I can also feel worse after eating, especially in the AM.

[julieph85]

Hippychic- yes. After I delivered my twins my pots was terrible. I wa able ro get out of bed and take care of them but I had major shortness of breath issues. Then my doc put me on a beta blocker that literally knocked me on my butt. It made the shortness of breath and dizziness so bad I could not even sit up. After a month of that I stopped it and my pots greatly improved and since I go through periods of flares and then slight remissions

[julieph85]

Naomi- no meds here. I don't even salt load. The only thing I do is drink lots of h2o and avoid sugars till the evening. This has helped my OI immensely.

[futurehope]

Why isn't it all the time? Well, in my case I have Mast Cell Activation Syndrome which is probably contributing to the POTS.

The doctors do not understand why sometimes the mast cells are triggered and sometimes they are not. Sometimes there is no obvious reason at all. They are doing research to understand this syndrome better. In any event, when mast cells are inappropriately triggered, they release mediators (chemicals) into the bloodstream which can cause all sorts of symptoms, POTS being one of them. Did you ever notice that even if your blood pressure an heart rate are okay, you still feel bad? In my case, it's probably due to my mast cells being triggered.

So, I am currently working on experimenting with various meds to hopefully prevent my mast cells from degranulating (or releasing mediators) inappropriately. Hopefully, on the correct meds and the correct dose, many of my symptoms will dissipate. This is an experiment that takes patience, persistance, and a methodical approach. Tune in next year to see how this all worked out for me.

[misstraci]

Futurehope... that is interesting about the MCAS. I've heard of it before but never could understand too well. Do you know how that is diagnosed? Did they do specific tests on you and was it a specialist or a PCP?

Traci

[futurehope]

Misstraci,

I, for the longest time, had no idea about the MCAS stuff. The little I knew from reading this board had convinced me that I did not have this syndrome. After all, I had never gone into anaphylactic shock, a hallmark of mastocytosis.

It is only in the last two years that researchers have determined that there is another form of mast cell disease besides mastocytosis. Masto is a proliferation of mast cells. MCAS is a dysregulation of mast cells.

I learned all this by frequenting a mastocytosis/mast cell disease forum.

I listed all my various medical anomalies and asked the people on there whether there was any possibility that I had a mast cell disorder? They said "yes".

I then found out the name of a leading researcher and emailed him the same question. He also said I should pursue the diagnosis.

It takes a 1 1/2 hour airplane ride or a ten hour car trip for me to see him. But I do feel that someone has finally tied together all my disparate symptoms into an underlying disfunction. Like my research doctor told me after hearing my history, "either you are incredibly unlucky, or there is an underlying problem that can explain your varied symptoms."

He is a hematologist. He specifically studies MCAS. There are many tests he did on me which are not the "usual". He told me that many doctors are not taught about these things, so I cannot expect them to understand. He is willing to work with a doctor of my choice locally, if they are willing to consult him. I chose to continue in his care at least until I consider that he has gotten me stable.

I cannot list all the blood tests and the 24 hour urine. It would take too long, and probably be meaningless to other physicians.

There is not one specific blood test that I know of to test for this. There is a blood test that measures serum tryptase that many doctors are aware is associated with mastocytosis if the result comes out elevated. But other than thryptase and mastocytosis, many dcotors are not aware of dyregulation of mast cells.

I was told I have MCAS because I have all of the following:

my history of problems in different areas of my body

medical confirmation of elevated mast cell mediators in my blood and urine

additional elevated markers that he commonly see in his patients

a positive response to anti-histamine therapy, in my case hydroxyzine HCL

no other diagnosis that account for the problems better

[Birdlady]

When I say mine isn't all the time, don't think I go days or weeks without POTS. I am symptomatic every single day, but every once in a while when I stand my HR's are 80-95. Usually they are 160+ so I'll take what I can get....haha

[jangle]

I have no idea but I can definitely relate to having relapses/remissions. I personally think it has to do with the immune system which is always fluctuating.

[Katybug]

julie,

I am on and off, too. I can be fine in the morning and then, boom, I stand up in the afternoon and all of a sudden I am in trouble and it lasts the rest of the day. Then, sometimes, I wake up in awful condition, not even able to pour coffee and put cream in it, but, by the afternoon, I am well enough to vaccuum the house. Some days are a complete wash and I can't do anything but be in bed or on the couch and other days I manage a whole day with very minimal symptoms that don't affect my activity. And, there seems to be absolutely no rhyme or reason to it...except for this: If I keep my daily activity to 2-3 hours of upright activity, I can usually count on those 2-3 hours consistently although the time of day may vary. But, if I do more or less than 2-3 hours one day, there is no telling what the rest of the week will be like. It is very weird.

[yogini]

Katy, that is such a great description. I too going from not being able to get out of bed in the moening to suddenly feeling like superwoman later in the day. Someday they will figure out what switch goes off in our bodies to cause such a crazy change in things.

Edited July 13, 2012 by yogini

[ramakentesh]

Mine varies dramatically from days where I can stand all day at concerts and drink beer to days where i cant drive. Many patients report this strong variation. I go through bad peruods and good periods where my symptoms are generally less and I have the very rare bad day, to months of bad days most days with random good days. Its a weird thing and my doc suggested it might indicate some sort of autoimmune or autoinflammatory cause as a guess.

Some docs have now linked the possibility of increased pro inflammatory cytokines effecting NET gene expression in sympathetic nervous system (both central and peripheral)

[ramakentesh]

mestinon is a good med for these variations at least in my experience. You can up the dose or lower as needed without any adverse effects in my case.