"that's Normal, It's Just Pots" What Does That Even Mean??

[Maisie87]

This post is NOT in any way trivializing the POTS, at all. Just the opposite.

ok POTS is a syndrome. The term "syndrome" refers to the compilation of symptoms, a description of how a person feels. It is used when a group of characteristics run together but the cause has not yet been found.. or the pathophysiology should I say.

There is a common denomenator among all of us. There is an underlying cause to this. I'm writing this post because I've just seen so many doctors say "it's just POTS", and tell me I'm silly for searching for reasons or causes. silly. .? They don't even know what causes POTS, it is certainly too soon to say there is no cure.

POTS isn't what's wrong, it's how we feel.

anyone else feel this way?

Maisie

thanks for listening to me rant. hope you all are feeling up to par today

p.s. I know there are some amazing doctors out there searching and searching for answers. bless them.

[Guest tearose]

I too am not trivializing POTS/Dysautonomia and when my doc says some issue I have "is the POTS" it is also him saying...there is nothing else he can do. I think mine says it with frustration because the research does not offer any new help or insights...yet! I am still hopeful and so is he!

We do need to keep searching but I think some PCP's don't keep up with the research as much as we do.

This is our life, our body and we continue to search for answers and that is not silly.

[Brye]

I find myself with all these symptoms and I just figure they're POTS related. For me it's partially because after seeing so many doctors and getting this answer "just pots" I've started using it myself. I also know there are certain things that if I complain about them they'll require a whole different specialist and I don't have the energy for any more work ups right now. The worst part for me is when they look at me and tell me "of course you faint ... you have POTS" The last cardiologist I saw reminded me there is no cure and there's nothing he can do for me. That's a whole lot of bologna ... I'm not expecting a cure ... just some help with the awful symtoms!! I share you're frustration and I also feel better now that I've vented!!! I am thankful to my PCP who has taken the time to do his research and isn't afraid to admit when he walks out of the room some times it's to google for some suggestions!! At least he's trying!!!

Brye

[lissy]

hey all,

In a way I believe since so many of us come here with this condition we should start doing our own research because look theres how many doctors are specializing in this and how many of them communicate and work together to get more in depth for causes and all the other important stuff. We all have more than one thing in common POTS is not the only thing we all share. Really doctors and researchers probally come to this site just to get more information I'm serious thou...They don't focus to much on this condition because its non-life threatening and I think It shouldn't be a syndrome most syndromes don't even have SIGNS just symptoms . And we all definitely have SIGNS ( tachycardia, OI, blood pooling<so on and so on) Maybe we need a foundation to demand more research and easier times with getting this condition being taken more seriously by Doctors and the government its actually a disability and thats probally one reason they call it a syndrome and not a disease because thats more disability money to hand out. But you can work around that depression/anxiety is a disability and you can get it for that and you know you all have that as one of your symptoms in your syndrome.

Lissy

[Maisie87]

I'm glad to know others are searching, too.

[juliegee]

There is a common denomenator among all of us. There is an underlying cause to this. I'm writing this post because I've just seen so many doctors say "it's just POTS", and tell me I'm silly for searching for reasons or causes. silly. .? They don't even know what causes POTS, it is certainly too soon to say there is no cure.

Silly for searching for reasons or causes???? If they were as disabled as you, Maisie, they'd be searching night and day. Don't let anyone tell you differently!

I've looked st the definition of a syndrome before & in some ways I don't think POTS even fits. As I recall, in a syndrome symptoms are not consistently demonstrable. Many of us here can easily demonstrate a high HR upon standing. That is a quantifiable symptom. The reason behind the high HR certainly varies among us, but resaerchers have identified subgroups of causes:

EDS (connective tissue disorders)

MCAD (overly reactive mast cells)

Chiari Malformation (compression of the vasovagal nerve)

I'm sure there are more, please add to my list. Additionally, I realize that there are many more of us, like you Maisie, who may not fit into these categories. BUT couldn't your multiple accidents have compressed your vasovagal nerve (like in CM), or stirred up your mast cells (like in MCAD)? Just thinking out loud- before my coffee Dangerous.

Julie

[firewatcher]

Maisie,

I'm right there with you! My doctors, not knowing much about POTS itself, are simply using it as a "waste-basket" diagnosis for symptoms they can't explain. They are happy that I am functional and stable and tell me I should be happy with what I've got. Now my doc at Vandy has said that he believes there is something else going on......but NO ONE BUT ME is looking. My OB/GYN puts a very practical spin on it: "well something has got to give out sometime and then we'll know what it is." I don't begrudge the comment, at least he was honest with me. Both he and my GP suspect my pituitary and are prepared/preparing me for it's destruction (whether from my immune system or lack of blood flow.) I also have had prior thyroid issues and while all my tests show OK now (except anti-bodies), the levels are fluctuating and it is the first thing my doctors grab for during an exam, they've given up on a pulse! I have a reduction of symptoms on an MCAD anti-histamine regimen and my PT says she suspects some sort of connective tissue disorder because of my flexibility................but there is no one to report that to, and nothing more than I am already doing to treat any of it. My docs tell me that any "formal" diagnosis would be "academic" and do nothing but satisfy/frustrate my investigative personality.

So, my dear Watson, we are here, you and I, sleuthing for ourselves.......you can borrow my magnifying glass anytime!

It's Alimentary!

Or Hypothalamic!

Or maybe I've just gotta be less flexible!

[MightyMouse]

May be an "out", but you can print out the following article from Mayo about the poor quality of life many POTS patients experience.

here's the abstract from pubmed/medline:

"Mayo Clin Proc. 2002 Jun;77(6):531-7.

Quality of life in patients with postural tachycardia syndrome.

Benrud-Larson LM, Dewar MS, Sandroni P, Rummans TA, Haythornthwaite JA, Low PA.

Department of Neurology, Mayo Clinic, Rochester, MN 55905, USA. benrudlarson.lisa@mayo.edu

OBJECTIVES: To quantify quality of life and identify demographic and clinical correlates of functioning in a well-characterized sample of patients with postural tachycardia syndrome (POTS). PATIENTS AND METHODS: Prospective patients were those seen at the Mayo Clinic Autonomic Disorders Laboratory from September 2000 to June 2001. Neurologists made diagnoses of POTS according to established criteria. Patients completed a questionnaire packet that included measures of quality of life (36-Item Short-Form Health Survey [sF-36]) and symptom severity (Autonomic Symptom Profile). Additional clinical information was abstracted from medical records. RESULTS: Ninety-four patients (89% female; mean age, 34.2 years) were enrolled in the study. Patients with POTS reported impairment across multiple domains on the SF-36. Physical functioning, role functioning, bodily pain, general health, vitality, and social functioning were all significantly impaired compared with a healthy population (P<.01 for all) and similar to that reported by patients with other chronic, disabling conditions. Hierarchical regression analyses revealed that symptom severity (beta = -.36, P<.001) and disability status (beta = -36, P<.001) were independent predictors of SF-36 physical component scores, with the full model accounting for 54% of the variance (P<.001). None of the variables examined accounted for a significant amount of the variance in SF-36 mental component scores. CONCLUSIONS: Patients with POTS experience clear limitations across multiple domains of quality of life, including physical, social, and role functioning. Treatment should address the multiple and varied impairments experienced by these patients and may require a multidisciplinary approach. Future research must further delineate factors, both disease related and psychosocial, that predict functioning and adjustment in this population.

PMID: 12059122 [PubMed - indexed for MEDLINE]"

AND, the article's full text is available for FREE here:

http://www.mayoclinicproceedings.com/content/77/6/531.long

I will also post this as a new topic on the board, b/c this article is an "oldie but goody" that all members should take a look at when they need a reminder about exactly *why* they feel so bad so often.

Nina

[masumeh]

I think sometimes we are so happy to have a name to call this experience, POTS, we forget that there should be something after diagnosis---called TREATMENT. As my POTS doc told me a few years ago when diagnosing me, diagnosis of POTS is tricky and treatment is even more difficult. But it is possible...and getting at the root of the symptoms is part of erasing the disease...it CAN be beaten...we can win.

There has to be a way. There is a cure somewhere.

I didn't believe that before...7 years of yuck had me thinking there's no cure for POTS just like there's no way to regrow an amputated arm...I just accepted being tired and fainting etc. But I kept trying whatever the doctors threw at me, and I have now recovered to almost my normal self. Actually I would say I am as healthy as a normal 28 year old (but I'm waiting pesimistically for the other shoe to drop, some illness to show me how much reserve I really have). I've posted before about the meds and therapy techniques that helped me recover. But there are so many etiologies that cause POTS symptoms, what worked for me wouldn't necessarily work for others...but you never know until you try. Keep trying. You'll find the right one!

[Maisie87]

Julie,I have been reading about Chiari Malformation. What kind of doctor diagnosis this?

masumeh I found your story about recovery. Interesting and very encouraging*

Reading all of your posts has been very validating for me. Thanks.

[janiedelite]

Yes, my doctors have also stopped searching for the reason behind my POTS symptoms. One of the symptoms I've been complaining about for 18 months has been chest pain and tightness, a very common POTS issue. But last week it became much worse, which prompted a visit to Urgent Care where I hoped they'd send me home, assuming that this was "just POTS". But nope, off to ER where my troponin was elevated which is a sign of heart muscle damage! If I had just stayed at home, riding it out, my heart could have been further damaged.

The cardiologist who was assigned to my case saw me in the hospital and admitted he didn't know what to do with me. He started talking about referring me to someone else when my husband spoke up and said "We don't expect for you to fix her, just please try to help her symptoms." The doctor seemed to take a deep breath at that and agreed to try to help me.

I went to an infertility specialist this past summer and during our first visit, he read all of my Mayo Clinic notes. He came into his office, my chart in hand, and said "Well! It looks like you now have your symptoms diagnosed!" At first I was mad because I worked hard just to get my symptoms named! But I realized he was right... we still don't know WHY our bodies behave this way.

My POTS is slowly worsening, and I told my primary care doctor that it will probably take some time before my symptoms escalate enough so that my docs come to a true diagnosis. She agreed, but said that for now we have to try to treat my symptoms as it's all we know to do.

I do believe that many POTS patients, especially teens, have the classic post-viral neuropathic POTS which resolves eventually. Maybe for those folks POTS is more of a true diagnosis?

[juliegee]

Julie,I have been reading about Chiari Malformation. What kind of doctor diagnosis this?

Maisie,

I think you would see a neurologist knowledgeable about Chiari Malformation. My guess is that not ALL of them are. Many here have that DX. Maxine is one. Read different folks signature lines to see who else. I know they will have the best info.

I did a little research for you and, YES, Chiari Malformation can most definitely be acquired post trauma. It was originally thought to be only congenital in origin, but recent studies have shown differently. Google Chiari Malformation & Post Trauma. There is a plethora of info out there.

The bad news is that the "treatment" from what little I know is surgery and often NOT successful. There may be other folks who know more effective treatment measures who will chime in and share. I agree, in your case, this warrants further investigation.

Julie

[MightyMouse]

You can also look at the website of the World Arnold Chiari Malformation Association (WACMA)

http://www.pressenter.com/~wacma/

they do have a medical resource list here:

http://www.pressenter.com/~wacma/usdocs2.htm

rather than a neurologist for evaluation, most of the diagnosing and treating docs are actually neurosurgeons. I know the one I saw, Dr. Heffez, treats chiari patients. I cannot recommend The Chiari Institute, listed on the WACMA site, as two of their doctors have had some serious legal issues related to ethical concerns. Not sure what the final call was there, but I looked at the WACMA site, and at least one of the names of those docs is no longer there.

Nina

[Brye]

Thanks so much Nina for sharing that article about quality of life with POTS!! I hadn't seen that one before!! I may share that one with my husband. He tries to understand but it's hard because I don't look like an unhealthy person!!

Brye

[ladyt]

i am so feed up whit oo thats becuse of our syndrom, here they dont even use pots diagnose, because it doesnt exist.. And the docs har so happy that i have a syndrom they can blame everything one.

But helping me finding out why (i am in my 30is and have it since litle girl), thats of no importanse. My life quality is of no importanse it seems.. I should ust be lucky to have some sort of diagnose...

it can gett a bitt old, and very very frustrationg.. I think docs whit couriosity is very very fare between, and i have not incountered any yet. but e few nice one, i gess better then non. the nice ones u can force some sort of help out ..

best of luck to u all

[Maisie87]

Julie,

I will be calling around to find a doctor who is familiar with CM. Thank you. And thanks for letting me know about

Maxine- I'll send her a message.

I googled post trauma CM like you said. . I think you may be onto something. You are right, it is definitely worth investigating.

So within the next couple weeks (hopefully) I'll have an appointment for Chiari Malformation and an appointment with an endocrinologist to test me for malfuction of my adrenals/pituitary. Hopefully some answers coming soon. . I used to try not to get my hopes up, but why not! My hopes are totally up**!

Thanks Julie. How is Mack doing? How are you feeling?

Hope to meet you soon

Maisie

[wareagle]

I'm feeling the same way. I KNOW there's something else going on besided the POTS but having a hard time getting answers. My thyroid started going hookey on me about a year ago. Initially the Endo wasn't going to treat me but I was feeling so sick (not just POTS sick) that he agreed to start me on Levothyroxine. I was a bit more stable then last April became really sick again...to the point where I could barley function. Again...it wasn't my "typical POTS" nastiness. My TSH levels were technically normal but I decided to cut my dose in half. That helped for a while...but now I'm starting to feel that sick feeling again. My POTS doc ordered cortisol and ACTH...both of which have come back elevated. So now I'm going to try and go back to the Endo. to see if they have any ideas.

I've been on small doses of Florinef for several years and I've taken B/C pills for over 10 yrs now so I don't know if that's what's messing with my hormones or if this could be an underlying issue that's been there for awhile. I've found that over the years I've grown a bit complacent and just attribute everything to this mysterious thing we call POTS. But there are a lot of other things that seem to be coming into play....persistent B12 deficiency, IC, Thyroid, and now cortisol. Guess I'll be playing the what came first game...the dysautonomia or these other things.

It is very encourageing that there are some many amazing people on this board that are doing the work for us and searching so dilligently for answers. Keep it up my friends....your efforts are much appriciated!!!

[MightyMouse]

In addition to Chiari, there is another syndrome that can cause similar problems called "normal pressure hydrocephalus". This can be diagnosed via MRI and a really good Neuro. I know they treat it at a few of the major hospitals-- Hopkins, Cleveland Clinic, Boston. I can get names from a friend who works with those teams it's something that you'd like to investigate.--just send a pm

Nina

[ramakentesh]

The word dysautonomia is a problem in a way - it just suggests the nervous system is haywire and thus potentially anything can go wrong.

Just as an aside - AIDS - the s stands for Syndrome but the cause is now accepted as the retrovirus HIV

[Maisie87]

good point..

[shadesofgrey49]

Very good point...

This is a good topic. I wish you could "like" things as on Facebook.