Does it really matter what causes my POTS?

[LindaJoy]

Hi.. It's me again. Just wondering. My doctor at the Cleveland Clinic doesn't seem to be too interested in what's causing my POTS. I want tests to see if we can find out the root cause, but she won't order them. My question--does it really matter what's causing it? I read some information on one of the POTS websites that said it was important to try to find the root cause. What should I do? Any suggestions would be most appreciated.

Linda

[Frank]

Linda,

I spoke with Linda Smith of the NDRF (651-267-0525) and found her very informative and personable. I think she could provide you with a greater perspective and answer some of your questions.

Frank

[morgan617]

I used to want to have all the answers, but then realized it was not only cost prohibitive, but it doesn't really matter to me. Even if I knew all those very specialized tests were out of whack, it wouldn't change anything, except I could fling it in the faces of the several doctors who's diagnoses were less than optimal. If you get my drift. There are so many diseases out there, that there are so many unknowns for. I'm just one more of them I guess. I think in time we come to terms with things. But in our own time. I think my doctor is more upset about it now than I ever was, simply because it makes him feel helpless and not in control of the situation. I think that was me, along with feeling like maybe I really was crazy. But after being on this board and realizing that just about everyone can relate to everyone else gives me all the validation I need. You are all people I have never, nor will ever meet in this lifetime, but you all understand any symptom I want to put on here. I've discovered that is validation enough for me. However, that being said, if you really want more answers then you just have to fight till you get them. I frankly don't have the desire or the energy to waste on it anymore. But it took me over 3 years to reach this point. Good luck, whatever you decide! morgan

[MomtoGiuliana]

I think you should pursue all of the information about your condition that you feel you want to know. I guess the most important thing to rule out would be POTS caused by a secondary illness like diabetes or lupus, b/c you would want that treated too. It is also prudent to rule out infections, allergies or intolerances (e.g. Lyme disease, celiac) that could very well be exaccerbating POTS for you. If indeed you have no secondary illnesses or conditions and your POTS is "primary" POTS, you may or may not be able to pinpoint the real causes, as so little is still understood. But, tests would probably be able to determine whether or not your POTS is caused by partial dysautonomia or hyperadrenergic activity or EDS. The treatment for primary POTS is the same, though, regardless. This is probably why your doctor isn't recommending further testing.

I never had any testing beyond the tilt table and tests for Lyme, diabetes, celiac and lupus.

Good luck with testing and treatment.

Katherine

[DSM3KIDZ]

I am also going through this with my neurologist. She did the autonomic neuropathy testing (tilt tablt, sweat test etc.) and plans to start treatment based on those results. So when I researched this site I found all the test that the doctors can do and I feel the same way as you. Shouldn't the doctors rule out or find imbalances so that they can give you proper treatment? I read in the previous post that all treatment is the same regardless so I guess as long as I can get her to rule out the majors lupus etc. than I will feel okay with that. My neurologist didn't even mention vitamin B testing. Isn't that important? Also my blood sugar or glucose (I forget which one) always came back abnormal but the doctors said they were within normal range. This always makes me wonder re: diabetes. Should I be concerned about pre-diabetes? The doctors never seemed to care about it. (Just wondering)

Does anyone know the tests they do at MAYO?

[KathyP]

Hi LindaJoy;

I've been waiting to see how your tilt table test went. Obviously you got a diagnosis of POTS!!???!! I hope the test wasn't a terrible experience for you. I remember how concerned you were about it.

I have researched Dysautonomia and I know that my POTS is a factor of that syndrome. Along with POTS I was diagnosed with Vasovagal Depressor Sydrome. When I was diagnosed my cardiologist told me that I had it since the day I was conceived. This makes sense to me because my Dad has Neuro CardioGenic Syncope.

As for POTS, it can be a secondary symtom to several different things. Was there any other diagnosis that your doctor gave you during your tilt table test that accompanied POTS? If not, I would have other tests done to be sure there isn't anything else going on. If the doctor at the Cleveland Clinic refuses to do them then it's time to look for one who will. Your insurance will pay for the testing not the doctor and it never hurts to check things out to be sure. I would ask the doctor about the possibility of any heart problems or diseases, and the hormonal balances of adrenelin, cortisol, and estrogen. I've read about POTS being brought on from a virus. So, there can be many reasons why.

These are just suggests. I am also the type that needs to know how and why. The more you know the better you will handle what you have and the better you will feel. I was going crazy for 8 years because I had a doctor that just brushed me off and sent me on my way. He never gave me my what or why and never did any testing on me. He just told me I had a panic disorder and pushed drugs on me. I now have a doctor that gave me a why and how and is willing to work WITH me. You'll make it through. You'll find the answers you need.

I know what you are feeling and I want to reasure you that you are not alone.

Take care,

KathyP

[Richland acres]

Kathrine,

I know of a wonderful doc. at Mayo in MN if your interested. he is a nurologist, his name is Dr. Brian Crum. he diagnosed my pots and is very helpful in looking for a cause, just push on him a bit. feel free to e-mail me if you have any questions.

Brenda R.

[Guest tearose]

How long have you had POTS and how bad an impact are your symptoms to your life? I wasn't treated for my pots nor did I take it seriously until my symptoms grew increasingly more disrupting to my life. Then I wanted to do something to make them go away for good. Ha! As we all know, that doesn't seem to happen.

My symptoms began to make be curtail my normal activities. Since I had become allergic and sensitive to drugs, it was important to me to get a good completed set of tests to learn as much as possible about what was going on. I am glad Mayo ran a dozen+ different tests. The treatment for POTS is NOT the same across the board! I should not take Beta Blockers, not take SSRI's...these could do me harm in fact. It was hard to go through all the testing and have to be very focused on understanding all they were telling me...but it was worth the fatigue and exhaustion to get to some answers. I may not ever know the original cause of my POTS but I have a more clear understanding about what is triggering it in my body and how to treat without adverse effects.

It is a decision you will have to make. You may not have the energy or resources to do more testing now. You may need a year or so "off" from dealing with the medical maze...it is more a personal choice I think. On my last comprehensive visit in Feb of 2003, Mayo wanted me to return for a follow up and to see how I was progressing in Feb of 2005. I couldn't do it! I felt so weak from getting sick in late Dec. , that still by Feb, I knew I was too weak and disinterested in making the trip. Now, as I get stronger, I am beginning to consider following up again somewhere.

take care, tearose

[LindaJoy]

Thank you, everyone, for your suggestions. KathyP, oh, yes, I definitely showed POTS. The test wasn't bad, but my reaction to it was awful. I don't remember ever feeling that bad in such a short time. After six minutes, my bp dropped to 26 / 14. Then, I started to cry. Dr. Fouad just said POTS--she didn't say anything else. I do have mitral valve prolapse.

I called Cleveland, and Dr. Fouad is going to run a blood volume test and an autonomic test this upcoming Monday. I'm still tired, but I really want to take advantage of the opening, since it's so hard to get in.

I don't think I care as much about the exact cause of my POTS as I want to know what kind of POTS I have, like hyperadrenergic, or mast cell involvement, or low blood volume. Then, we can treat it directly.

Hopefully, when I'm back next week, I'll have more answers to share.

Again, thank you everyone for being so supportive. This site is such a blessing. I can't tell you!!!

Linda

[Ernie]

Doctors still don't know much about dysautonomia and so far it's a trial and error with the medication. I have been trying to find the etiology of my disorder for the past 2 years and it seems that no doctor care about it.

Doctors used to put all my symptoms as psychiatric and now that I have POTS and NCS they put all of the symptoms under that disorder.

It is very frustrating to realise that doctors just don't care. I am still trying to find the cause and I keep telling myself that I will search all my life. Maybe one day I will change my mind.

Ernie