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Still Trying To Understand Myself


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Hi everyone , I often have questions come up in my mind about my condition

and thought I would just put it out here instead of worry about it at night.

For 8 years I have suffered terrible dizziness

was told it was anxiety then it was Migraine *** vertigo.

Then I had some passing out episodes and couldnt go shopping without it happenening.

Then a year ago my neurologist discovered I had orthostatic hypotention and said the

episodes I have are NMH/vasovagal.

So now I am salting & watering myself and still on beta blockers.

I tried fluro pills and got headaches ,

I tried paxil pills and felt more shakey and nervous.

So I am still having episodes and dont leave the house much at all.

When I read about NMH/vasovagal it says the sufferer usually starts getting episodes in the teenage years and then it goes away and comes back later in life. This got me thinking about how I was as a teenager ( I am 42 years old now), I can remember lots of things that were not right and I will list them here ....

when I was 11 years old I remember going on a long train journey to see my grandparents and when my mother said to me "we are nearly there " I came over really excited and suddenly fell to the floor with severe stomach pain that made me sweat and dizzy.

This then became the norm for me ,

when I got a new boyfriend and felt nervous I would get griping stomach cramps that were so painful I would nearly pass out.

When on holiday in Turkey and it was hot I passed out.

I passed out a few times with this and then I got better when I got to 22 year old.

Had my first child at 25 and then I started getting odd episode of dizziness which calmed down again.

Had my second child at 29 then would feel shakey alot when out and about ,

I would have afternoon sleeps to cope.

Then when I was 34 years old, my world turned upside down with constant floaty headed dizziness

and fainting , when I was taken into hospital they said I was dangerously low in potassium

and was put on a drip.

So I am wondering

have I been suffering from dysautonomia all along ?

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Hi mirry- I am 41 and have just been diagnosed with POTS. Learning about the condition has also made me realize that I have had symptoms of dysautonomia for decades. I am being investigated for a mast cell disorder now as well. My experiences and episodes seem a lot like your description, except I don't actually pass out.

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Thats really interesting Sarah I will be really interested to hear how you get on, because 99% of the time

I do not pass out, I have symptoms daily and have alot of pre syncope.

I would really like to know more about the mast cell thing,is there anywhere I could read about it ? Am I right its to do with histamine ?

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Similar here in that I had horrible social anxiety is how I would describe it that started as a teen and then weirdly subsided in my early 20's. It mostly made me feel sick to my stomach but I would feel horrible in those situations. I remember having probably panic attacks during tests in school. And I remember my heart pounding and then basically it would stop or I would calm down for a while and then go through another wave.

Also I could not eat in public. It would really make me feel sick. It all seemed to center around my stomach like I would get instant diarrhea at the drop of a hat and sweat would roll down my arms. My shirts would be drenched all the way to my elbows. This anxiety was terrifying. Home was my safe place I relaxed there and generally didn't feel any of this. I never passed out or took it to the level I do now. It all stopped with the maybe sick feeling, floaty feeling, and stomach issues, heart pounding etc.

Fast forward 20 years and it's all back with a vengeance and I've taken it to a whole new level. But I remember that sick feeling in social situations, much of it is the same. Instead of my stomach being triggered it seems it transferred to my heart and the vasovagal activity.

It really *****.

I do think I have an anxiety panic issue that was never treated or addressed. It is to a point now for whatever reason that it is physically debilitating and may have turned into POTS for me.

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I have been reading about mastocytosis and related conditions on the Mastocytosis Society of Canada website, and also at tmsforacure. It's a bit confusing so far, because the MCAD diagnosis is apparently controversial. Some doctors think that Mast Cell Activation Disorder is a separate condition, in which mast cells degranulate too easily but conventional tests for mastocytosis come back normal. However others feel that MCAD is actually indolent systemic mastocytosis that is not detected by the tests, because the tests are somehow inadequate or not sensitive enough. I have been taking the anti-histamines and sodium cromoglicate recommended and these meds do seem to be starting to help.

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I had a look online about this condition and was shocked to read smells can bring on symptoms - this has always happened to me , I would smell perfume or someone smoking and then my stomach would hurt & always made me ill.

What antihistamines do you take and what is sodium cromoglicate ?

lieze, its strange how it was in our stomach first , then went to our head and heart.

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I just started with the antihistamines MacksMom/Julie recommends, then saw a doctor familiar with mast cell disorders who has prescribed others for me. I started with Zyrtec/Reactine and Zantac in the mornings and Benadryl and Zantac at night. Sodium Cromoglycate is a mast cell stabilizer - here in Canada it is available over the counter as a nasal spray, but I have a prescription for the oral version, Nalcrom, which you dissolve in water and take before eating. It has helped with my GI symptoms, and the whole combination has been enough that I don't feel like I am dying every minute of the day. However I am still quite unwell and hope that the new regimen I start today will help more.

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