How Many Of You Believe Your Pots Was Due To Ptsd

[Angela]

that's what i was told by a m.clinic dr. I don't buy it or don't discredit it completely. I didn't have a perfect childhood (who does) but for those who have gone thru testing or not of causes to rule out idiopathic pots, do you think post traumatic stress disorder could be a factor. seems not likely to me, but would just like input for interest sake.

[arizona girl]

That seems a bit far out to me. I had symptoms as an infant. Unless you consider being born a ptsd event. I'm sure though stress doesn't help an already faulty mechanism. I'd want to see this docs evidence based medicine and have him prove it.

Thats not to say that ptsd victims don't also have symptoms of dysautonomia.

[Rachel Cox]

I was diagnosed with PTSD before my original POTS diagnosis. Thing is, that many of the symptoms of PTSD could also be symptoms of POTS. I did have terrible recurring nightmares... overall though, since finding various treatments and understanding what my body is doing more, the PTSD theory seems to hold less water, for me. I do believe that our bodies and minds are inextricably linked in terms of our wellbeing. But it was interesting to me that when I had a medical diagnosis and stopped seeing a psychiatrist, the worst nightmares went away. Perhaps, when the PTSD dx was given, I had an explanation for the fear I felt, when in fact the fear was because I knew my body was not working properly? It's murky.

[Batik]

Angela, do you a) have a history of some traumatic event or series of events, and b ) a diagnosis of PTSD? Because it sounds a bit like you're saying the doctor is suggesting that you have PTSD when you haven't been diagnosed with it. I've heard of some people who will chalk up pretty much anything to PTSD, which is in itself a bit dodgy, but I'm talking about in patients who don't actually have a PTSD diagnosis or any reason to think they have PTSD. There have been problems with people running quack "treatments" for ME/CFS where they tell every patient that they are ill due to unremembered trauma, in some cases telling people in perfectly healthy marriages that they are being abused, whether they know it or not. I believe it's going on for other medical conditions as well. I hope you've not run across one of these, as it's a thoroughly unprofessional way for anyone to behave.

In answer to your question, yes, I have PTSD, and I think it's exacerbated my physical symptoms a certain amount. But it doesn't coincide with the start of the ME/CFS (16 years ago), it started a few years later. As for POTS, I'm still trying to sort out getting diagnosed, so I'm not 100% sure I had it or when it started. The POTS-type symptoms got markedly worse after I had surgery a year ago, which I understand is common. The PTSD is mostly residual by now, it flares up now and again.

[boymommy3]

It's interesting that you bring this up. My SIL who is a nurse has said for years that she thought I might have PTSD from a very traumatic set of events my husband and I went through early in our marriage. He seems fine but my body seems to have somewhat fallen apart in the time after our event. It's not something I have ever been dx with though. As for my POTS symptoms, if I had it before two years ago, it was mild, but I had a full on set of symptoms then. Our trauma happened almost 15 years ago, but is was and is something we have have to deal with still. To further complicate things for me, I have had hyperthyroid issues for years so it becomes very difficult to pull apart symptoms.

[Kellysavedbygrace]

I don't have any evidence or suspicion of PTSD in my case.

I do understand as mentioned above that some patients w PTSD may have symptoms similar to Dysautonomia. I agree with B above and wonder why this would even be suggested unless you've already been diagnosed with PTSD.

[Batik]

I think it might be worth outlining what PTSD actually involves.

To begin with, you are involved in or witness a traumatic event, something that puts you in fear for your life (e.g. a car crash) or personal integrity (e.g. rape). PTSD can also occur after repeated events, sometimes lower-level ones, such as child abuse or domestic violence. Feeling helpless seems to be a key part of it.

* Re-experiencing the event(s). This includes nightmares, flashbacks and intrusive thoughts about the event.

* Avoidance. There are various ways of trying to avoid being reminded of the event(s). A uni tutor of mine had PTSD after being in a car accident, and it was a long time before she could cross the road again, for instance.

* Hyperarousal. Feeling on edge, intensified startle response, being very jumpy. For instance, jumping a mile if someone opens the door. Irritability is common as well.

* Emotional numbness. Feeling detached from others, losing interest in activities and life in general.

* Sleep problems are normal in PTSD, as well as other symptoms common to anxiety. Other common features are suicidal ideation and/or substance abuse.

It's normal to have some level of response like this after a traumatic event. It's not called PTSD unless it turns into a longer-term thing.

If you've been through something traumatic in the past but you're not experiencing these symptoms, I think it's a lot less likely that you have PTSD. Trust me, PTSD is not subtle. For instance, another student tried to dangle me off the edge of a building in my first year at uni. I was pumped full of adrenaline for a bit, I remember being quite angry, but that was it, and I was fine by the next day. It didn't affect me as a trauma, even though my aunt kept telling me it should have.

I would also say that a PTSD panic attack is nothing like a physical POTS-type reaction. If I have a PTSD panic attack, I'm curled up in a ball feeling terrified and I can't keep my mind from running on a hamster wheel on the topic of the trauma. Chances are I'm also having very frightening nightmares at night. I attempt to deal with the symptoms by anti-anxiety meds, by talking to people, and by generally taking care of myself, making sure I'm warm and well-fed. If I'm having a purely physical episode, then it's usually triggered by something obviously physical such as a meal or standing up or having overdone it the day before, and I don't feel panicky. At most, I'm a bit jittery.

[lynnie22]

i find this question very interesting. I recently decided to return to psychotherapy in order to tease out traumatic events that happened several years ago from the worsening POTS symptoms. Although I do not think the PTSD caused the POTS (there are several years in between), I do think traumas can have a profound effect on our nervous systems and certainly leave us vulnerable to a breakdown in its proper operation. Hyperarousal as one of the symptoms of PTSD seems to cross over in some way. I also have thyroid issues (no thyroid) and do attribute the POTS partly to that.

Ultimately I do not think PSTD is responsible for POTS but can contribute to it.

[Altruism]

My childbirth gave me severe PSTD and POTS, so I'd agree. To a certain degree. I'm doing EMDR to cope with both and it helps.

[azmusiclover]

This topic is also interesting to me. I have both POTS- dx'd in 1999 and PTSD along with lots of chronic daily stress (kids with special needs) My POTS started after I had Mono in college, although I had mild POTS issues as a teen. POTS went away during my mid and late 20s, early 30s and then I had my daughter (rough traumatic pregnancy), had my gall bladder out, dietary problems, got an intestinal bug and BAM- back to POTS. I've been working really hard this past year to get back to my level of functioning and now am treating both the PTSD and trauma stuff from growing up as well as working from a medical standpoint and playing with diet and exercise. I'm doing a program for the next 19 weeks to work on the mental-medical connection and I am willing to share my experiences on how it works with my POTS symptoms if anyone is interested.

[Chaos]

No history of trauma so can't have PTSD. That said, I've had 3 different medical professionals tell me at different times that my body reacts like a PTSD patient even though I don't have a history of trauma.

When you're talking about the same neurotransmitters involved with both the physiological and the psychological, it's hard to separate out what's doing what, especially when you're talking to people who are not specialists in the area.

http://www.ncbi.nlm.nih.gov/pubmed/18942064 This is a link to a study that shows that lactate levels in ME/CFS patients' brains were nearly 300% higher than patients with generalized anxiety disorders and over 400% higher than in controls. That might account for why a lot of us have ANS issues and "feel anxious" physically, despite not having an emotional component to it.

[Tdg4]

On 3/10/2013 at 9:44 PM, azmusiclover said:

This topic is also interesting to me. I have both POTS- dx'd in 1999 and PTSD along with lots of chronic daily stress (kids with special needs) My POTS started after I had Mono in college, although I had mild POTS issues as a teen. POTS went away during my mid and late 20s, early 30s and then I had my daughter (rough traumatic pregnancy), had my gall bladder out, dietary problems, got an intestinal bug and BAM- back to POTS. I've been working really hard this past year to get back to my level of functioning and now am treating both the PTSD and trauma stuff from growing up as well as working from a medical standpoint and playing with diet and exercise. I'm doing a program for the next 19 weeks to work on the mental-medical connection and I am willing to share my experiences on how it works with my POTS symptoms if anyone is interested.

Hello! I'm interested to learn about your experience dealing with PTSD and trauma, if you still monitor this site. I started addressing trauma with a therapist about a month ago and I'm in the worst flare of what I think is POTS (never diagnosed due to the issue going away the first time this happened, though Mayo in Scottsdale suspected "pots or something similar").

I haven't been able to return to work and waiting to get into a doctor has sucked.

[Pistol]

@Tdg4 welcome to the forum! You have an interesting question about PTSD, Trauma and dysautonomia. I have HPOTS ( thought  to be genetic since it affects women in three generations in my family ) as well as PTSD and ADHD. I have underwent extensive neuro-psychologic testing, am currently and have been in counseling for the PTSD. I also was positively diagnosed for POTS with lab tests and TTT. The neuro-psychologist states that my symptoms are NOT related to anxiety or trauma. 

I went through a rough time emotionally a year and a half ago but it has not affected my POTS, or worsened the symptoms in any way, neither has the therapy. However - therapy for PTSD can be very scary and stressful since the goal is to have you come to terms with the trauma and learn healthy ways to deal with it. This will trigger the trauma recall and the pure stress of this can potentially trigger an abnormal autonomic response, as ANY stress can.

What is always best when going through a flare is ample rest, mild exercise and lots of fluids, as well as good self care and diet. To most breathing exercises can be helpful, your therapist may be able to teach you some. Be gentle with yourself, and talk to your therapist about your symptoms as well as your doctor. Let us know how you are getting along - be well!

[bumpkin]

Seems like POTS/PTSD could be sort of a chicken-or-the-egg type thing at times too

I had been dealing with mild dysautonomia and MCAS symptoms due to mold exposure for years, but my full blown POTS and panic symptoms only began after I overdosed on nootropics and energy drinks (and subsequently quit caffeine cold-turkey) one night five months ago. (I was trying to be productive and thought I'd overcome the chronic cognitive impairment with brain supplements, bad move..)

When I was frantically researching during the inexplicably panic-filled weeks that followed, I found this study that mentions how excess acetylcholine can trigger PTSD-like symptoms:

https://pubmed.ncbi.nlm.nih.gov/9620801/

 

Turns out upsetting your neurotransmitters can make your body think it needs to be on constant alert 😭

[MaineDoug]

I believe that my Dysautonomia/POTS was caused by trauma. Specifically the loss of 2 beloved dogs and my cat, unexpectedly in one month. They were my World and I was so distraught that I became ill. I am more careful to process grief and other emotions now. 

[Relax86]

Not at all for me. My Pots has waxed and waned since I became a member here during my worst and most significant flare (2011ish ??). I got Covid for the first time in August 2023, my Dad had a brain bleed, my Mom who has dementia stopped ambulating and I needed to have her and her home outfitted for a wheelchair, my dog was DX with cancer for the second time and subsequently passed away about 2 weeks ago. And despite all of this being a pretty terrible run of events my POTS hasn't raged, and my mental health has been what I think is appropriate through these stressors. 

This isn't a flex, but more of one persons response to multiple stressors NOT resulting in a POTS flare. I know that stress can provoke my symptoms but it doesn't always. And I fully predicted through all this to have a major crash. It's been emotionally a total mess.

These days my POTS is provoked by heat, lack of sleep, and usually stress. I'm getting close to being considered fully in menopause and going through that has been a little rough but as I'm getting there I think my Pots is actually a bit better. 

Hopefully this helps some folks not worry that extreme stress might not always mean a POTS flare.  Because before this series of bad events I would've never guessed I could get through it without flaring.