Neuro: "free Floating" Anxiety Affecting Autonomic System

[abbyw]

Hi,

I don't know how many of you "know me" by now, but I live overseas and I had never found a doctor who knew about POTS and was "educating" my GP until now. It has been a year and 3 months since this started. I had/have classic POTS symptoms with sudden onset which stared with dizziness, exercise intolerance, presyncope and syncope, HR increases of over 30 on standing, jitteriness and chills. Prior to this, I had IBS, which is pretty much gone now.

I have been helped a lot by an SSRI.

I finally saw a neurologist today who has a "longtime interest" in dyautonomias.

His theory is that I have what he called free floating anxiety, which he says is different than acute anxiety and panic attacks. He says that this will affect various systems, and that it first affected my stomach, and then hit my autonomic system.

Not sure what I think about that.

He does want to start with a 24 hr Holter and then a TTT. That makes me happy, because I have never been checked for anything. However, he does not want me to be off the SSRI to do the tests. He says, I should wait till I feel stable on the SSRI before I do the tests. He does not believe that the SSRI would regulate the ANS, but that it would reign in the anxiety, which could be causing my symptoms.He just wants to check me out cardiologically.

I asked him about any connection to neck pain and he said "that's BS" - which was pretty funny because it wasn't in English....

Anyway, not sure what I think overall. I always get annoyed by the "anxiety" diagnosis, but this was a little different. Idon't like thinking of this as a physical manifestation of a psychological problem. My husband doesn't understand why I should be upset - so what if it is caused by anxety? As long as you find something that helps and you can get your life back, who cares if you have to take an AD for the rest of your life? SO you take on pill a day and you live your life!

Any opinions?

Thanks,

Abby

[Katybug]

Well, if the anxiety meds had fixed my problems I wouldn't have even pursued a further dx. I guess my concern would be getting the proper dx in case the anxiety meds do not do the trick. I think I would not be happy about doing the ttt on any meds though. My personal belief is that diagnostics are no good if you taking meds that could alter the results, and, particularly if you have hyper-pots those meds could give you inaccurate data. Again, just my opinion.

[FarmerAmy]

Hi Abby,

I think I can relate to the "free floating anxiety", although I haven't heard that term before. I think my long-term anxiety has caused my ANS to become disregulated. So it's not like if I just get my anxiety under control everything will be fine. I need to retrain my ANS so that my body doesn't have such an exaggerated response to stress and anxiety. You can see my recent thread on biofeedback and how this is helping me to retrain my ANS.

Amy

[lukgar1]

I'm sorry but this just doesn't sound right to me. From what I understand, you should be off your medication if you are doing a tilt table test and holter. What's the point of testing you if the medication masks your symptoms. Does the SSRI help with the fainting? And pre syncope episodes? In the Changes video on you tube they explain the reason ssri works is not because of an anxiety/depressive disorder but rather it affects the same neurotransmitters that are misfiring. I just saw a neuro on autonomic disorders and he scoffed at the diagnosis of anxiety. In my opinion the anxiety is a natural reaction to your body taking on so much physical stress trying to maintain homeostasis, hence your inability to handle external stresses as you had previously. Well good luck, I hope all goes well!

[abbyw]

I agree with you lukgar.I tried pushing him about the SSRIs in the office but I didn't get far. I know that Grubb and others believe in it, but there are some that don't. The paper from Vandy, for example, does not list it as a treatment. I got the feeling that pushing more would be an ego thing at that point.

I did just send him an e-mail asking him to clarify his stance on testing while on the SSRI. If he claims that I do have dystautomia, but it is caused by GAD, is he saying that if I treat the GAD, it is as if I don't have dysautonomia anymore? Then why bother doing the tests at all? I told him that it made more sense to me to do the tests as by body would naturally respond to get a clearer picture. We'll see what he says.

Meanwhile, big talker that am, I have no idea how I would wean myself off of the meds and let myself get so ill again for the purpose of the testing, and then have to wean myself back up, etc. Does not sound like something I want to do.

[tigerbomb]

That theory sounds a bit "unconventional" to me

It was once thought that POTS patients were more anxious, but current research does not support that:

Patients with POTS are sometimes clinically diagnosed as having anxiety disorders such as panic disorder. Indeed, patients demonstrate elevated scores on the Beck Anxiety Inventory [10] (23±10 vs. 7±8; P<0.001), a commonly used instrument that quantifies the magnitude of anxiety symptoms [11]. Unfortunately, this questionnaire includes somatic anxiety symptoms (such as palpitation) which can result from a hyperadrenergic state such as is seen in POTS. When a newer, cognitive-based measure of anxiety (the Anxiety Sensitivity Index [12]) is used, there was a trend toward less anxiety in the patients with POTS than the general population (15±10 vs. 19±9; P=0.063) [11]. Thus, much of the anxiety attributed to patients with POTS might be due to a misinterpretation of their physical symptoms. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/)

That being said, plenty of people have found anti-anxiety meds helpful for controlling POTS symptoms. As someone who had a pre-existing anxiety diagnosis (and had been on an SSRI for years) when I developed POTS, I am sure that these random adrenaline surges aren't helping my mental state. And my POTS is definitely worsened by both physical and mental stressors. So it's not a cut and dry relationship at all.

So, IMO, anxiety can be a part of the equation, but it's not going to cause dysautonomia unless your ANS is dysfunctional to begin with.

FWIW, I had my initial TTT without weaning off my various meds (though I didn't take them the morning of). I'm symptomatic regardless, so I really just needed a positive result so I could get referred to specialists and get more extensive testing. I'll probably have to go off my meds at some point, but I'm not looking forward to it either.

Good luck!

[corina]

Abby I'm not sure what to think of this. Maybe give it a chance?

I was wondering where you are located as I';m currently working on updating the European Physician's list for DINET. If you are in Europe feel free to pm me and I might be able to help you find a doctor (that is IF you'd want to change of course!)

[abbyw]

Hi,

Here was our e-mail exchange: I wrote him the following:

Thank you very much for your time and explanations today.

I apologize in advance for taking some more of your time, but there is something that I still don't understand.

I know that when I am on the SSRI, I feel significantly better. Without it, when I walk a few buildings away to get my daughter from gan, I feel like I am going to faint, and standing and washing dishes makes me feel so ill, that I take my pulse and find it over 120.

If this is from anxiety, and the SSRI is helping it, then when I do the 24 hr. holter while on the SSRI, you will not get the same results as you would have gotten while off of it.

Are you saying that if anxiety causing the dysautonomia, and we treat the anxiety, it is as if I don't really have the dysautonomia anymore? If so, then, if I feel (mostly) well while on the SSRI, why bother doing the testing at all?

I feel that if I am going to do the tests, they should test what my system does "naturally". (Although I would be very nervous to put myself back in that extremely ill state.)

And as you said, we can't give a diagnosis based on anecotdal information, but it would seem that basing it on tests while a person is medicated would not work either.

Can you please explain?

Thank you again for your patience,

He responded:

If you have indeed POTS , SSRI would not mask the signs .

If you are happy with SSRI regardless of why you are taking it its fine and there is relay no need for further testing at this point.

[corina]

For me personally, the SSRI does mask the POTS signs, as it slows down my heartrate. My doc explained how the SSRI works in POTS (dysautonomia) and made me understand but unfortunately I'm too brain foggged right now to help you understand but remember It has something to do with neurotransmitters.

[jangle]

Ssris made my tachycardia worse...take that for what its worth?

[res]

My own experience is that POTS plus difficulty maintaining adequate caloric intake caused enormous free-floating "anxiety" that Florinef greatly relieved. In retrospect I think the "anxiety" was mostly actually physiological arousal. When I have anxiety now it usually has a clear cognitive component, whereas the free-floating anxiety wasn't "about" anything.

That said, medication prescribed for anxiety has been *extremely* helpful for me, although it doesn't affect my heart rate. It greatly reduced my severe anxiety-type experiences, and helped blunt intense emotional reactions to stressors. I was taking seroquel at a high dose (800 mg) although on Florinef I've been able to reduce the seroquel to 300 mg without a return of symptoms. I also take other psych meds which have been helpful. I'm not currently on SSRIs, although they were partially helpful in the past.

Any actual anxiety also makes it harder for me to cope with POTS symptoms, as well as making eating harder.