brethor9

I agree with Jangle! after almost 4 years of having the crazy label thrown at me I am now in the hands of knowledgeable specialists and every one of them have stressed that POTS is not a psychological illness....as my one specialist says..stress cant turn your legs purple and he says we need to stop blaming ourselves for having this illness as that just makes everything worse....good advice I think! and just my 2 cents

Bren

My specialist also just recently mentioned Celexa as the next step; although 2 years ago I was put on several types of those drugs and they just made everything worse so I am really hesitant to go that route again; I think I will wait until the MCAD testing is done

Bren

Count me in too!!! Used to work out like a demon and run almost 2 miles everyday......now on my worst days I practically have to be carried up the stairs ;( this illness is so weird!

Bren

yes! my knees are one of my worst spots for pooling....they go deep purple and ache like crazy! its definately related to POTS for me HTH

Bren

Me too! and major fluttering and palps....think its all just part of having POTS.......

I worked in a cancer clinic for almost 5 years....started getting sick about a year after I started...mmmm.....interesting!!!

me too! sometimes it feels like something is being constricted....and I also get the horrible head pressure.....is it because we don't dilate and constrict vessels properly maybe? I also find when I get that constricted pressure feeling it causes my heart to beat irregular...I HATE it!!

Bren

I hate to sound negative but perhaps the reason Dr's don't prescribe saline is more because there is no money to be made in it.....not for the Dr's or the drug companies.....medications are big business!! I mean seriously I have spent ridiculous amounts of money trialling all of these next to useless medications for this illness....when I told my Dr how much saline helped he just said to keep drinking more and the only reason to ever need saline is because I am not hydrating properly (yeah like 3-4 litres isnt enough?)

Bren

I crashed completely after a partial hysterectomy....kept my ovaries....I have no doubt that hormones are somehow tied in to my illness somewhere...I just dont know how and none of my specialists are willing to connect the dots ....it seems so obvious to me ;(

Bren

Good luck Brye!! Hugs

Bren

Has anyone tried the D-drops?

Bren

Sorry Rama! lol to throw in the MCAD stuff......

Bren

Corina

That is a valid thought about the GA.....I also have gotten worse after every GA surgery I have had....I have had 4 in the last 9 years......my neurologist once told me that anasthetic is incredibly hard on the nervous system and that it can affect it long after you think it has worn off. My very first symptoms started not to long after giving birth.....just another piece in an unsolved puzzle.....

Bren

Rama, I agree with the hyper pots...beta adrenergic part.....this is what I tested positive for and now I am being investigated for Mast Cell issues....I strongly feel they are all related that way.... I just wonder like everyone else what sets it all in motion to begin with?

I agree Rama....I think its etiology just hasnt been stumbled upon yet as it is a fairly new syndrome that is just starting to come into the mainstream of valid medical illnesses. Hopefully with more attention being focused on it more specialists will become interested in studying a cause and treatment for it.

My most helpful meds so far have been; Florinef, Ativan, Zantac and magnesium....I am struggling to find an antihistamine that doesnt have terrible side effects although they do help with vasoconstriction

Beautiful Issie

love coconut water....much better than yucky Gatorade

carbs, sugar, dairy, gluten....to be honest on some days I am afraid to eat anything for fear of setting off a flare..... I swear sometimes all I have to do is look at my system the wrong way and off it goes ;(

I believe POTS is just how our illness manifests itself and that it is likely secondary to some unknown etiology specialists have not figured out yet....personally I will never be happy with just the POTS diagnosis or MCAD.....I truly believe that something else is the heart of the problem and when that is discovered everything else will fall into place. I think of it like my son's Autism....it is a syndrome also and symptoms manifest differently in every child along the spectrum which makes a cause or treatment so difficult to define....when we nail down the true triggers then we can find a better treatment for these illnesses

WOW interesting so far that we were all high acheivers........ sometimes I wonder if this didnt somehow contribute to my illness....I worked so hard....way too hard! always put in 110% and was always the one to stick it out to the end if there was a stressful project that just had to get done....or when it came to advocating for my autistic son, worked out like mad, multiple surgeries,etc.....maybe I just burned my nervous system out? the body can only take so much ....just wish I could figure out how to reset the system

Bren

I have a few but none on my stomach mostly my lower back but I gained 72 pounds with my boy (all water weight! crazy I was 110 pounds prebirth......

Ernie

I am so sorry that you have to continue dealing with ignorance from so many doctors regarding your son's illness ........Have you tried traveling outside of Montreal? The specialist I see is in Hamilton and he is very good....if not for him diagnosing me I would likely be in a padded cell and completely bedridden. I do believe the Hamilton clinic sees young patients as whenever I go for followups there are young people there for testing..... I also heard there is a specialist in Ottawa? that would be closer to you....

Bren

Hoping stopping the magnesium gets you out of this awful flare......poor Issie! Big Hugs!!!!! hang in there.......

Bren

Totally understand Dani!! Last week was my good week...clear head...no pain...energy, etc but at night I was having more adrenaline surges again so I should have seen this weeks crash coming one of my docs refers to it as catecholamine dumping.....he says because my body isnt able to regulate the adrenaline properly (produce way too much) I crash harder because it takes longer for it to disappear from my system. Normal people who can regulate may only feel the crash for a few hours where in people like us it can last days even weeks. The theory kinda makes sense to me.....

Bren