Primary or secondary POTS?

[lthomas521]

I'm glad that people have been listing their diagnoses and interventions. It's been revealing an interesting pattern. Most people seem to have other disorders that could predispose them to POTS: Ehlers-Danlos syndrome, Lyme disease, Chiari malformation or other problem with the cervical spine, celiac disease, and problems with carbohydrate metabolism.

If your POTS is caused by some other condition, it is considered to be "secondary" to that other condition. Of course, if the POTS is resulting from a condition that has not yet been diagnosed, the POTS would be classified as "primary."

[DancingLight]

I think about this a lot too...

I am currently (under the direction of my POTS doc) pursuing two of the possibilites as actual causes of my POTS...cervical stenosis and Lyme disease. I also have gluten intolerance (never able to verify celiac b/c i had already gone gluten-free and it makes me way too sick to try to go back to gluten just to get a test right now!) and dairy hypersensitivity.

I was originally diagnosed with CFS and NMH--with the NMH as secondary.

Then, I was diagnoses with POTS and EDS with the EDS as primary, the POTS secondary.

Now, we have ruled out EDS and see other possible causes of the POTS. I have been searching for seven years and we still haven't quite figured it out, but I do feel that it is closer and closer every day!

I do wonder about POTS and how many illnesses it will some day be divided into. Like CFS and Fibromyalgia...I just thing we are missing something still with all of these and eventually they will be broken down more specifically with more sub-goups...and of course, hopefully better treatment!

Emily

[corina]

I think I've had POTS my whole life, although not knowing. I've had periods where I was extremely tired, dizzy, fainting, but after a while (half a year, a year) I always got better. Although after every surgery I became worse (not knowing what was wrong). In 2001 I had my coccyx taken off/out (after breaking it while skating) adn during/after that surgery the POTS really hit me. I became worse over the years. Meds help me but aren't giving me my life back. I hope one day they'll find a med (or a cause!) to help us all.

Corina

[Ernie]

HI,

I think I have secondeary POTS but I don't know what is the cause of it. I am still under investigation.

[Lukkychrm42]

Hi, I don't think it's always clear cut, and I don't know exactly what caused my POTS. I think I have had some form of dysautonomia since birth from genetic factors... I can trace my earliest POTS symptoms at least to middle school (12-14 years old), but probably before that. In my case the actual POTS might be from Mast Cell Activation Disorder, or a virus, or something- I think it got worse after I rapidly lost weight 4 years ago, but it's so hard to tell. I knew I didn't feel right, but there was noting visibly wrong withme, and at the time I was really into alternative medicine and took it sort of to an extreme thinking that if I was sick it was because of what I put into my body. I had just become vegan (coinciding with the weight loss), and I was afraid my parents would get mad and tink that it was the veganism (though I had been vegetarian for 2 years already), so I didn't tell anyone. I thought I could handle it. Ooops! My bad! As you can see from my signature, I got diagnosed at age 21, so I've had it for a while beforehand.

It's also hard to tell if you have other illnesses in conjunction with dysaut. or because of- like for instance, do I have POTS because I have low blood volume because I have dysaut and can't retain water? or do I have GERD because I have dysaut or MCAD? I guess it doesn't matter in the short run as long as there's medicine out there that helps.

[AJVDK]

I was recently at my doctor, who thinks my POTS was caused a a chemical exposure in 98, when I was in collage. I was going to colleage for photography, and I worked work study to help pay for books ect. I was mixing the fixed, and someone put the wrong lables on the boxes. Needless to say I enede up in the hospital for a few days, and was told that I should change my major, as I could not be around the dark rooms. So about 6 month later I start having odd this happen like passing out, my gal ballder stop working and need to be removed, starting having uclers, I think could have been strss from dropping out of college, ect. but anyways I never thought that could play into my heart problems that started in 2000, and got worse over time, after see my family doctor, heart doctors in Des Moines, then going to Mayo who seemed to be on the right track to ending up at the UofI they think it could have been the POTS, and all of things could have been casued due to the chemical stuff back in 98. I turly am not sure but it make since as I never had things this bad untill after 98, I even had many hard times of depression, that could have been caused my this (HA anf was starting to think I was CRASY!) I know some of the doctor sure thought I was. But looking back now I can't help to think the doctor is right, I will be intersted to see what they say in Cleavland on the 18th.

Have a great day!!!

Amy

[Guest Finrussak]

Hmmm...maybe for some of us, we are predisposed to BOTH the POTS and the other stuff as well??? Its just that once we are faced with a bunch of things ( like a specific illness or condition) we become less able to keep the other tendencies in check???

For example an interesting correlation came about with Lyme pts. It has been found that those who had experienced more mouth sores during youth(canker type, not herpes) are often harder hit and longer to go into remission with Lyme!!!

And Dr. Grubb recently pointed out that the mouth sore thingy is very related to Connective tissue disorders too...so maybe its all linked?? or just a group of tendencies that when they pile on...wham...we "get" sx.

As for my list of "others" I too now suspect I had dysauto type stuff going on since at least age 8...WAAY before Lyme etc--standing on line-up in school playground caused me to feel suddenly nervous and puke-y...yet I was "happy" and perfectly comfortable. Of course 40 yrs ago all they said was "must be school phobic"...yet I LOVED school..." its a nervous stomach". Thus started the lifelong branding of psychosomaticism.

NO one picked up on my "ability" of double jointedness having anything to do with it until good ol' Dr. Grubb.( last spring)

So maybe there can be predisposing factors that share in the cause of the numerous afflictions; plus other factors that ARE actually causative ( like autoimmune damage or toxin exposure)...then you can get into the murky area of " But what makes one person so open to toxin damage and not another" question???

In physiology nothing is as simple as it looks....

take diabetes...either not enough insulin OR cant uptake/use what is there. BUT why??? there are so many theories and often it gets back to the ol' " chicken and egg" scenario as to cause vs effect.

and one last thought just to add to the confusion...perhaps we belong to a select group of people who are more "sensitive" to body changes??? Some of us can even sense drops or increases in blood pressure while most of the world is oblivious!!! we are "gifted"...now where can I exchange some of these "gifts"???

[melly4]

I am still "under investigation", also. But I truly believe that mine and my son's symptoms started after a bout of fifth's disease ( caused by human parvovirus). It's just my theory, not proven.

Melly

[dizzygirl]

Hi..I am not sure about my pots...I blieve that I have had a dysautonomia thing going on since birth.. I was born 3 /12 months premature. and at less then a month old i had a PDA closure (patent ductus arteiosis).. and needless to say I have had a rocky road since then!

But my mom told me that I have always had tachycardia.. that I even had it as a wee-bitty infant. (and I was wee-bitty at 1pound and 5oz...)

I think that my pots may actually have some genteic factors going on.. that need to be further investigated..

But as for finding that "cause" of my pots.. we (me& docs) have no clue..

I was not diagnosed with pots until I was 20.. and the first times I "blacked out" I was about 11-12 yrs old..

[JenniferInOhio]

I have no idea. I hope it is primary. I don't need anything else to deal with. My aunt had ms, so I've always been afraid of having it.

[Dizzy Dame]

Cool post!

I've been thinking about this alot since I got POTSy. I became very, very ill with parasites about two years ago (I was living in amazonian Ecuador at the time) and despite good treatments, my system has never fully recovered. I regularly get diarrhea, and nausea since I got better. Now the POTS (I began getting sick about three months ago, but in hindsight I've been symptomatic for about a year if not longer).

The parasites devastated my body. During the thick of it, I lost 30 pounds, and began to slough my mucus membranes (my tounge began to shed as well as my lips, and intestines). I was unable to digest anything other than oatmeal and rice for about three months while my digestive system healed. I became anemic and developed a severe heart murmur. I know that my POTS hasn't been officially linked with my "infestation" but I'm sure they have something to do with one another.

Great question though, it's interesting to hear what people have to say about it

[morgan617]

Geez, that's the million dollar question isn't it? I can think of all kinds of reasons..

!. my mom smoked and drank during my gestation

2. I was a preemie due to placenta abruption at a time when about 1 out of a zillion moms and babies survived that

3. I ate two bottles of baby aspirin at age 2 and was on a vent for a few days, the doctor said I would die and when I didn't said I would be brain dead (waalaa)

4. Sometimes I look at some of my relatives and think...inbreeding

Chicken before egg or vice versa. Genetic, who knows. No one else in my family has it.

I have been sick for as long as I can remember. I was accused of attention seeking from a doctor at the ripe old age of 8, when I couldn't stop vomiting all the time. So my mom would give me an entire bottle of castoria anyone here remember that stuff?

Any number of things could be causal, or they don't have a thing to do with it. Just crazy wiring for no apparent reason. A person could go crazy trying to figure this horror of a disease out. It's not wrapped in a neat package with a pretty bow, it's spread it's ugly claws every where. So sometimes I wonder, but most times I just deal. Can't change any of the above, so who knows. morgan

[melly4]

Morgan, sometimes you say the funniest things that just make my day when things are going wrong or I'm feeling sick, but you just told the saddest story, and I want to send you a big cyberhug. I'm so sorry you have been through so much, since even before your entry into the world. But I'm glad you're here to charm us with your wit.

Melly

[yogini]

Lthomas,

I am so glad you posted this. I actually meant to post about this, because I have been wondering about this ever since we added the signatures. It seems like almost everyone else here has listed other conditions in their signatures. Most of these seem to be conditions that probably caused the POTS and/or conditions resulting from the POTS. As far as I know, POTS is my only medical condition. I was basically very healthy and this whole bascially hit me out of the blue following a virus. So I am interested in reading the responses to this post.

Morgan, you are hilarious!

[faithinspires]

million dollar question...i agree!

morgan, you truly are witty...love your posts!