Are We Experiencing A Form Of Post Traumatic Stress?

[Lemons2lemonade]

I don't know about y'al but when i have a POTS attack, it is the scariest thing i could ever possibly imagine. It literally feels like i am going to die. Moreover, i feel completely out of control. And it seemed after one happened, they continued to happen more and more frequently until i was medicated. Even then, i feel like i am standing on the edge of a cliff at all times, trying to hold my pysche and body back from a pots attack. I was watching "Through the Wormhole" the other day and was surprised to hear that Propanolol had been found to be used in great effect to treat patients with post traumatic stress syndrome due to its side effect of memory loss. I am wondering of the great successes i have heard on this forum about propanolol and its memory loss capabilities related to ptsd. Have we wired our brains into having more and more pots/ncs attacks? Moreover, does this shine light on the relationship to our condition and its exacerbation by stress?

http://www.biologica...0412-8/abstract

[Lemons2lemonade]

Symptoms of PTSD:

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  Flashback episodes, where the event seems to be happening again and again(que pots attacks)
  
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  Repeated upsetting memories of the event
  
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  Repeated nightmares of the event (que waking up terrified)
  
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  Strong, uncomfortable reactions to situations that remind you of the event (que restaurants and busy places
  

• 
  Emotional "numbing," or feeling as though you don't care about anything (we have talked on the forum about this before)
  
• 
  Feeling detached(que out of body feelings)
  
• 
  Being unable to remember important aspects of the trauma
  
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  Having a lack of interest in normal activities
  
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  Showing less of your moods
  
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  Avoiding places, people, or thoughts that remind you of the event(que hiding at home)
  
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  Feeling like you have no future
  

• 
  Difficulty concentrating( i think we all know what this feels like)
  
• 
  Startling easily ( i do this)
  
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  Having an exaggerated response to things that startle you (yeah, like feeling like you are going to pass out)
  
• 
  Feeling more aware (hypervigilance)
  
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  Feeling irritable or having outbursts of anger (que anger bursts)
  
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  Having trouble falling or staying asleep
  

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  Agitation or excitability (check)
  
• 
  Dizziness(check)
  
• 
  Fainting(check)
  
• 
  Feeling your heart beat in your chest (check)
  
• 
  Headache (check)
  

So, if someone can have similar symptoms from PTSD what does that say about the psychology behind our illness?

[hippychic258]

OMGosh thank you so much for this post. I 100% agree with you I have told my Husband over and over I have PTSD from Pots!!!! It is exactly how you describe the most scariest feelings in the world like you are going to die and I do everything I can to avoid it so that is why I am so scared to walk I am bedridden and am just waiting for the symptoms so go so it will be safe for me to get up. It is horrible!!!!! Bring on the propanolol. My first flare 3 years ago was so bad It took me a year you get back to normal after the flare was gone.I didn't know what it was I just thought it was a nervous breakdown, as well did the doctors...surprise surprise actually they thought it was anxiety but it was way way beyond that so I thought nervous breakdown) anyways 3 years later here is a flare and it is 10 times worse than the first one and I know I will suffer the psychological effects from this for the rest of my life. I agree PTSD can be caused from a pots flare up.

Edited July 21, 2012 by corina

[yogini]

I definitely think I was traumatized over the first year or two of POTS. The symptoms are very scary and I was scared of my own shadow in living because I wa worried about triggering symptoms. Who can blame us. It is very scary. I have a much better perspective now that I am used to it, but still have those moments of fear sometimes.

[friday7]

I think it's pretty normal for us to be traumatized by these symptoms. Not only are they horrible and scary but people ignore them or tell you it's in your mind. It's hard enough experiencing scary symptoms again never mind feeling like no one will understand.

My mom just doesn't get why I get so panicky when I get bad symptoms..or rather even sympotoms familiar to times that I have had a horrible experiences. And she's the most understanding person I have around me.

I don't know if it's PTS, but when I get the symptoms of a certain kind i know I do get stressed out due to the past experiences.

[Dizzysillyak]

If we looked at our psych this way then every significant emotional event in anyone's life could be classified as causing ptsd. Childbirth, losing first tooth, falling off a bike, etc. What we learn from

these events is that we don't want them to happen again.

Fwiw, I wouldn't

attach any psych diagnosises to this illness or any other physical illness because from my experience the medical profession and general public won't see past this. We're much more educated on our

conditions than most.

Fwiw, I hadn't read that people here were feeling better with propanolol. I have read that most of us have allergies particularly to food. Gluten especially.

And please don't think I don't appreciate your feelings here but While of course having a pots episode is alarming, I wouldn't say it's worthy of a ptsd diagnosis. No

more than burning my hand when cooking. Or stubbing my toe. Etc etc.

Being upright too long

induces elevated hr, petite mals and sob for me, but I know that these are completely controlled by laying down and allowing proper blood flow. So the scarey feeling is short lived.

Btw, I used to feel like crap 24\7 until I eliminated the toxins from my diet and lifestyle. I only

discovered how much laying down helped afterwards.

Tc ... D

Ps. Imho, the trauma brought on by the ignorance of the medical community in dealing

with cfs or pots or most chronic illnesses can be more damaging emotionally than the condition itself and could

actually lead to pstd. Blaming

the patient and /or not intelligently assessing the patient's health, is more than non productive, it's damaging. Not to mention, imho as a ex professional in computers, it makes doctors look ignorant and we all know that they're not.

But, If they had a working knowledge

of what's entailed and how to get to the root cause, we wouldn't feel so traumatized. And if

proper treatment happened quickly enough, imho many would heal. Bandaids only prelong the illness.

[Lemons2lemonade]

Dizzy, I totally understand where you are coming from. And I think that every one of us can share the sentiment of frustration with doctors telling us that it is psychological. Sometimes I feel like we all carry the memory of that battle for diagnosis so close at hand that we naturally become defensive when even attempting to entertain the idea.But I think that it is important to look at any avenue that may provide relief from symptoms because for me, that is the ultimate goal. When i first began experiencing symptoms, "i have no control over this" was burned into my brain because i tried to control it and was unable to. To me, there does seem to be a quite prevalent psychological component to this as well via perceived stress. Things that seem stressful like driving, going out of the house, being in large groups of people etc. bring on symptoms. What i have found, and i know that i am only one person, is that ignoring my symptoms, downplaying them, and continuing on with my life has not only improved my quality of life, but also reduced my symptoms dramatically. That being said, i also recognize that i had little control over this until i was medicated, and that being medicated enabled me to have more control. I think that this gap can be one of the toughest to cross with this disease--the gap between what medication can do for us and what we have to do for ourselves. Ultimately, i am not seeking a PTSD diagnosis, or hoping that anyone else here will. Instead, i am offering an idea, that perhaps the mechanism of PTSD and Dysautonomia may share some similar physiological qualities. And if a simple memory can cause such known and well documented physiological symptoms in individuals, what are the implications of this for people experiencing Dysautonomia? In people with PTSD it is their memory (as far as science knows this far) that is capable of triggering things like fast heart rates etc. So if it is doing it to them, what says that it isn't also our minds doing it to us? I am sure that if we looked at the physiology of PTSD patients we may find physiological changes. Here are some of the physiological findings of those with PTSD:

http://psycnet.apa.o.../2004-10639-002

http://books.google....%20ptsd&f=false

Moreover, those with PTSD show dysregulation in many of the same areas that those with POTS do http://books.google....%20ptsd&f=false "...hypothalamic-pituiatary-adrenal axis [hpa] axis) [is] known to be dysregulated in many individuals with PTSD"

I also recognize that there is also a chicken and an egg component here. Is it stress that brings on Dysautomnomia or is it Dysautonomia that is causing stress? I just find it very interesting how similar the two are. And people with ptsd also feel like what they are experiencing is real.

Here is an interesting article about stress in our youth and autonomic function: http://www.europeanneuropsychopharmacology.com/article/S0924-977X%2806%2900251-3/abstract

This article does a good break down and also examines mitochonrial dysfunction in PTSD: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2500154/

[brethor9]

stress can make this illness worse that is for sure! but I don't think that is the underlying cause of it.....otherwise everyone who is traumatized would have POTS or autonomic dysfunction. Personally I have tried lots and lots of medications and nothing has worked so far to get me even halfway functioning including beta blockers....in my case my specialist thinks neuropathy may be the cause in other people something else entirely........everyone's ANS is unique therefore the underlying cause of illness is unique...what works for one may not work for another

[Dizzysillyak]

Hi lemons,

Interesting discussion. Thanks ..

I understand what you're saying but I'm not sure I understand ptsd. I'm not one to buy into psych

diagnosises tho. Imho, their info is heavily skewed by poor research. Actually, just saying we had psych

problems instead of real physical problems is a great example of bad info.

Fwiw, I can relate memories of stress related symptoms to at least a hundred

different experiences in my life. For example .. I have total recall of natural childbirth with my dd 24 years ago down to the

breathing I did to slow down her birth, her smell, her first nursing and the way her face looked. This doesn't

mean I was traumatized tho. It just became an emotionally significant event that I will never forget. Getting stuck

in traffic in my first brand new non automatic car on a rainy night haunts me too. These feelings

are real .. And I experience them again just writing this.

Traumatic experiences include being rear ended at appr 40 mph.

I'm a wreck if cars start slamming on their brakes in front of me still tho. But that's just me remembering

how bad it was. Still no ptsd tho.

Personally I feel anxious driving, in crowds, etc because my brain isn't working well from hypoperfusion

and I'm confused and embarrassed. Sure I could take something for this but they make me too

loopy to function. I'm glad you found one that works for you tho.

Unfortunaty, No drug can stop my blood from leaving the upper part of my body which causes my heart to pound harder, brain stops working,

kidneys suffer, lungs begin to shut down, etc.

Tc .. D

[issie]

If this were true, then why don't all active military people have PTS - they have seen some horrendous things. Some of them do have it. It may be some people process trauma and stress less efficiently than others. But, with people who have had POTS since near birth - how could PTS be at play with them. The trauma of being born???? Not thinking this is it. There may be some genetic component at play - with how our bodies hormones function and therefore how we process a stressful situation. We know that stress makes us worse.

But, even if someone were to have PTS . . .unlike what was said above ------It is real. It is real to them and it is real to the medical community. Our brains are attached to our bodies and we can not separate the two. When doctors figure this out and stop trying to put a "mental" label on people and realize that what ever our minds and the chemicals affecting our minds do, also affect our bodies and those functions ----all this, "it's all in your head", stuff will go away. It's just as real as any other dysfunction our body may have.

Interesting idea - but, not thinking it's the case with everyone with POTS. I do however, think that if we all could learn to handle our reactions to stress better - things would probably be a lot better for all of us. Really, we have no control over what happens . . .the only control we have is how we "react" to what happens.

Issie

[POTLUCK]

General information on PTSD not meant to agree or disagree:

PTSD is normaly caused by a trauma outside the realm of normal human experience. This is in fact a requirement for the diagnosis. The percent of individuals who will develop it increases in proportion to the degree of the trauma.

For example an individual who is raped has an increased chance. An individual who is raped in a more horrific way is more likely to have PTSD but still not 100% will.

For another example those soldiers who experience combat are more likely to develop PTSD than those who do not, those who witness trauma to a friend ( such as explosive injury next to them ) are more likely yet to develop PTSD, those who are captured by the enemy higher yet, and the % who later develop PTSD for Prisoners of War with time approaches the 90 % range.

There are many studies of this. This shows that although some people may be less likely to develop PTSD from a trauma and some less likely to develop it, given a strong enough trauma nearly all people will develop PTSD.

The symptoms of PTSD do not include changes in HR with standing. POTS patients usually do not experience reocurring thought of their trauma, avoid thinking about their past trauma, have flashbacks of their trauma, startle easily ( might be seen in POTS due to the adrenergic system being on high ) There is absolutely no reason why a person could not experience PTSD and POTS.

I also agree with dizzy to be very careful about presenting any slight possible idea to physicians that POTS has to do with psychiatric illness as "some" doctors seem to jump to the conclusion it is all in our heads!

[yogini]

I don't think anyone here intends to (or can) diagnose anyone with any condition or imply that POTS causes PTSD or the other way around. We are all sensitive to having any link between POTS and a psychiatric/pscyhological condition. POTS is a physical illness.

[jangle]

Certainly I can imagine POTS being dramatic enough to induce PTSD. I don't think I have it as I don't have nightmares, flashbacks, or any of the other typical symptoms.

[POTLUCK]

What I find interesting is the way the mitochondrial genes can be physically changed by outside things ( like trauma in the case of PTSD. )

[issie]

I find the studies on epigenetics interesting. If something can turn a gene on and cause a mutation - then very possibly something can turn it off. Studies are continuing, and it will just be a matter of time. Hopefully, that will translate into a study on POTS and we will get some answers.

Issie

be very careful about presenting any slight possible idea to physicians that POTS has to do with psychiatric illness as "some" doctors seem to jump to the conclusion it is all in our heads!

I so agree with this statement - it has taken people years with POTS to make the doctors take us serious and try to look for a physical reason for the dysfunctions going on. We don't want to take 10 steps backwards on this one. Science is finding legitimate physical reasons for the dysfunctions and we need them to focus more on other possibilities and not just label us with this "it's all in your head" label, and stop searching for the real "reasons" for the problems.

Issie

[Katybug]

I think this is another example of how POTS has many different etiologies and that PTSD could be one of them for some people. I know a few people that have been disabled by PTSD and they do experience some dysautonomia symptoms. And, vice versa, I have to think that this illness (dysautonomia) could be traumatic enough to cause PTSD in some people. The brain is such a complicated organ and so little understood...

[Millerla]

What I understand is that the chemicals released by stress and the chemicals released by an off-balance autonomic system are pretty much the same and very intertwined. So when we are more stressed, the autonomic system gets more stress signals, which sends more back to your nerves, which send more stress to the AS... Which means that if you start thinking about attacks and getting anxious about them; you will be more stressed, triggering more attacks, making you more stressed, and so on.

So anything that can get your mind off of the attacks should help quite a bit.

[peregrine]

From a treatment point of view - the spaciness that I experience with POTS is very similar in its effects to depersonalization, which is very common in folks with PTSD (and is something I get, rarely, during mood episodes, which is why it was so familiar when it started). Unfortunately, the ways that depersonalization is treated in PTSD are typically anxiety-based treatments - cognitive-behavioral therapy, anti-anxiety medications, some other mood stabilizers - and none of those are effective towards my POTS-spaciness. My autonomic neurologist actually suggested I talk with my psychologist about cognitive-behavioral techniques to deal with the spaciness, but the psych and I agreed that there's nothing she and I can do together, since the issue is not incorrect thinking (as in PTSD) but lack of cognitive ability/thought process due to not having enough blood in the brain (in all likelihood). I think there's some knowledge to be gained from understanding how PTSD originates and why it does cause some autonomic symptoms, but I'm wary from the treatment point of view as stated above (in addition to the social/medical problems) - I think it might lead us (particularly when considering physical PTSD symptoms) towards less effective treatments. But still, interesting points.

[Lemons2lemonade]

I was interested mostly that they were using propanolol to treat ptsd to great effect

[peregrine]

The memory effects they mention are interesting - I'm on propranolol (have been for about 5 months now) and haven't noticed any, but it might be the dosage - I see that the article you linked to in the first post was 40mg 3x daily, and I'm on 15mg 2x daily (max was 30mg 2x daily which caused dyspnea and bradycardia). I'm glad to not have the memory loss, but I could see it being useful in that case - and wouldn't have thought of propranolol as a medication for it. Neat!

[ramakentesh]

No, although PSTS patients also seem to have abnormal NET expression and norepineophrine reuptake. Not many of these patients describe dizziness and tachycardia that is postural as an example.

[freelemons]

I would think the psychological part of PTSD triggers a nervous system cascade that results in a number of the symptoms that are so similar to ours. I.e. If you are terrified, you get a massive adrenaline surge. Not to oversimplify PTSD but I would imagine that a lot of the overlap is more about the nervous system's reaction to the memory/psychological trigger. If beta blockers can tamp down some of that nervous system response by slowing heart rate, it makes sense that it would lessen symptoms and maybe also prevent some kind of circuit (when you feel your heart race and other symptoms, you get more anxious which makes it race more, etc.).

[Angela]

Funny topic. A mayo clinic neuro told me he thinks I developed POTS due to PTSD. He said that he is getting vietnam vets in who have just recently developed PTSD, it can take time for it to hit and just one little trigger to set someone off, even after over 20 years.

[Kay107]

My father has severe PTSD and spent his career studying PTSD and treating combat vets for it. He feels convinced that I have 'secondary' or 'intergenerational' PTSD from living with him and his PTSD and that my POTS is how I manifest it.

I would have to spend years studying the idea in an academic setting to really come to a credible opinion on the topic, though. It would be interesting.