Psycho-Physiological Dizziness Syndrome (PPDS)

Oh for God's sake. I've experienced a dash of this recently (after reading about it elsewhere on the forum) so I read this thread with interest, I follow @Gigalos' link to TMShelp and find my own reply to that post from way back then. It just goes to show how utterly ridiculous TMS is and how you can even forget how bad you've had it. I am so grateful to the people on this forum and those at TMShelp for giving me the lifeline I needed when I was desperate.

Thanks too to Sarah for her kindness. Such gestures transform lives.

 

Hi all. Just bumping this old (but great) thread and was wondering if anyone was working through ppds as their primary TMS symptom set right now?

Just wondering how people might be progressing with this. I’m 6 weeks into it... and have seen some signs of improvement. However, I think my body is sensitized and needs patience.

Anyone deal/dealing with this fun little condition?

 

I was diagnosed with PPDS about two and a bit months ago by Melbourne's top neurologists in Dizziness. I have seen some improvement after starting CBT. I'm in my 5th session at the moment. I've kind of plateaued at the moment as there are fundamental issues in my life outside of PPDS that I need to address to see a complete recovery. It's a work in progress but hopefully I can keep pushing through and making the right changes in my life.

 

Take your time brother, slowly the symptoms will fade away and one day you will realize that they are gone. Did your doc use the term PPDS or did he call it psychogenic or something similar?

 

Hey Brother, I have the same question as Gigalos... did your Neurologist actually use that term? Or did he just write it off to stress/anxiety (etc.) Either way, it's actually a very encouraging thing to hear real practitioners being attuned to this condition.

If you browse any anxiety message board... you just see hundreds, and I mean hundreds of people quoting these exact same balance/dizziness symptoms... all vague, all see docotrs (most) and few or none come up with a physical cause. It's among the top anxiety/stress symptoms actually. I've only had it in spells over the years, so it's a bit surprising or ironic to have it come towards what I would consider the end stages of my recovery from stress disorder. (anxiety/panic, etc.)

Great to hear you're working on a structured program though. I'm doing this on my own mostly... focusing on trying to reduce life stress... take pressure off of myself and increase my (already fairly established) acceptance of 24/7 symtpoms. (I've had a lot of practice at that lol)

Anyway, let us know how this is going. I agree with Gigalos... this goes eventually... when we allow it to. How/when exactly I'm not sure. But I know that living with the right attitude about it and reducing burden on oursevlves can only help.

 

After I explained what had been happening to the Neurologist (a period of acute stress along with about 2 years of un-diagnosed depression etc) he actually diagnosed me with PPDS and gave me the handout from Sarah that was in this thread. He explained that this kind of thing is quite common and can be observed in animals when they are under severe stress (I think he said there have been tests done on hamsters and the effects of stress, they will show dizziness or something). I'm working with a neuro-psychologist at the moment who basically works exclusively in this field.

 

Wow Brother, have to say I’m impressed with the level of understanding of these conditions your practitioners show there. What is it about Australia? Wasn’t Claire Weekes from there too?

Great to here you’re in this program and look forward to hearing how you are progressing. Do you mind sharing a bit about your symptoms? How this popped up? How you went about approaching it?
Had you heard of pPDS before visiting your neurologist?

 

Sure. I definitely hadn't heard of PPDS (despite anxiety causing me to Dr Google so hard that i was convinced i was going to go in and be diagnosed with something terrible) so it was quite a relief when he diagnosed it.

It basically came about due to unhappiness/stress that was sustained for two years, along with a period of severe stress toward the end of last year. I can remember the first time i ever felt that "slipping" sensation. It hit me super briefly and came with a wave of panic and passed just as quickly. as the stress got worse so did the dizziness until at the end of last year i had a complete breakdown and had the worst anxiety I have ever had to date, I spent the first 7 weeks of the year going to DR's appointments, scans, specalistst etc and when i wasnt doing that i was laying down freaking out thinking I was sick of dying. By the time I got to the neurologist the symptoms I was having were:

• Periods of unsteadiness or a feeling of the ground being unstable.
  
• A feeling of rocking or swaying, or feeling like you are veering to the side when walking.
  
• A feeling of ‘fullness’, ‘cloudiness’, ‘fogginess’, or ‘heaviness’ of the head.
• Dizziness in response to particular movements, such as turning head from side to side, getting up from a chair, looking up, bending over, lying down etc..
• Tinnitus (ringing, buzzing or hissing sound on one or both ears)
  
• Visual disturbances (sensitivity to bright light or to motion stimuli; episodically out of focus)
  
• Numbness, tingling or ‘electrical’ sensations in hands, feet, face or scalp (often one-sided)
• Momentary dizziness or internal ‘shift’ sensations that last for a couple of seconds.
  
• Nausea
  
• Headaches
  
• Feeling hot or flushed
  
• Wobbly legs
  
• Tightness or clenching of the jaw.
  
• Heart palpitations or missed heart beats
  
• Body or situations may at times feel different or unreal
  
• Frequent fatigue

Literally everything that was on that handout I was experiencing at one point or another (smileys are what i would consider the primary symptoms). I also get super tight shoulders that cause what feels like nerve pain going up into my neck, a spasm in the neck occasionally and also a lot of nervous arousal. The Neurologist said its a classic case of PPDS and the Psychologist confirmed this when she read the letter from the Neuro.

 

Back when I posted this I added the pain and tightness in the neck/upper back/shoulders part myself, although it wasn't mentioned in the original article. Surprised to see that your neurologist came with this exact diagnosis, as for years the only thing that came up on Google has been this thread and a couple of dead links to the article. But now that I think of it... I believe Sarah Edelman is living/working in NSW! With only 25million people, the medical community is relatively small and that may be the reason that your doctor knows about it.

 

Surprisingly when this first started it actually started with my neck seizing up completely. I wasn't able to turn it to the right at all. This was fixed up with a bit of physio, but it comes back from time to time, especially when i get super stressed.

My psych was telling me about why a lot of people don't have much luck with this diagnosis. I can't remember he exact explanation but it basically came down to not finding anything wrong physically and so a lot of the time it gets brushed off as being "all in your head" so to speak.

 

• Periods of unsteadiness or a feeling of the ground being unstable. (10)
  
• A feeling of rocking or swaying, or feeling like you are veering to the side when walking. (10)
  
• A feeling of ‘fullness’, ‘cloudiness’, ‘fogginess’, or ‘heaviness’ of the head.(10)
• Dizziness in response to particular movements, such as turning head from side to side, getting up from a chair, looking up, bending over, lying down etc.. (10)
• Tinnitus (ringing, buzzing or hissing sound on one or both ears) (8)
  
• Visual disturbances (sensitivity to bright light or to motion stimuli; episodically out of focus) (8)
  
• Numbness, tingling or ‘electrical’ sensations in hands, feet, face or scalp (often one-sided) (3) (Though I've had this in the past as as stress symptom)
• Momentary dizziness or internal ‘shift’ sensations that last for a couple of seconds. (5)
  
• Nausea (7) (More when it started, but on and off)
  
• Headaches (6)
  
• Feeling hot or flushed (2)
  
• Wobbly legs (8)
  
• Tightness or clenching of the jaw. (7)
  
• Heart palpitations or missed heart beats (3) (No more than usual with stress/anxiety disorder from the past)
  
• Body or situations may at times feel different or unreal (4)
  
• Frequent fatigue (7)

On a scale of 1 (lowest) to 10 (most accurately describes) .... mine are above in ( )

I was pretty shocked when I saw that list, like you. And unlike most other "inner ear disorders" or things of that nature, there aren't lots of major symptoms that I simply don't have. I have all of these listed, 100% of the primary ones.

Can I ask, has yours felt more constant or fleeting? I think what has really taken me off guard about this is how constant it's been.
I have to admit, there does seem to be a physical element to this. It's an always-on condition that may fluctuate a bit, but it's got a much more constant feel than most of my stress/anxiety symptoms from the past.

I'm also about 8 years into knowing a great deal about stress/anxiety disorders... and have made great progress. So, to be knocked down this late in the process was quite surprising, I admit. That said, I don't feel like I panicked about it early on... I rolled with it OK. I think it became disturbing to me when it stayed around a month or so without real improvement. Then my brain started to get involved with the "when will this go, will it go?" type questions.

I saw an ENT last week. He didn't have much to say. Suggested a hearing test or MRI. My hearing is fine. I've done self-test with apps and I use my ears for my living. (Audio producer for a TV network.) I'd know if there was an issue there immediately. Maybe I'll get an MRI some day, but... I've never heard of it helping a case like this.

I think for me it's about now shifting my mindset to live with this for as long as it needs to be around. I'm so used to stress sx clearing up in a timely manner these days due to the progress I've made. But, this seems to need time. I do believe I overdid it for a couple of months, and this actually came on when I was doing heavy weightlifting.
(Was doing an inverted lift and stood up and got dizzy) So, there's some logic in the notion that the body may need time to sort this out.

IMO... PPDS is just a title. It's not rare. This is extremely common. (Dizzy/balance issues that can't be explained.) It's just few people have classified it as an actual title.
Jim Folk over at anxiety center has been talking about this for years, and how it's a primary symptom... maybe one of the ones they hear the most in their polls/questions.
So, the occurrence of this isn't unusual... but finding folks like yourself who are experiencing it and understand that it's not something "broken," rather a process to work through is rare. So, it's good we can progress through this and hopefully others can learn from our trials as well.

 

Sorry, and one that's not on this list as much... looking up or down at sharp angles, straining to look at something or tilting the head and looking up (etc).... can really set it off badly. That should be on the list for me. It can be doing OK... and ramp way up when I do these movements.

 

It's definitely a physical thing. I believe it has something to do with the constant arousal of the limbic system, not being able to process information correctly due to constant scanning for threats.

To answer your question regarding frequency: It's definitely a constant thing for me at the moment and has been for the most part. I've felt the symptoms fluctuate and since having the breakdown and onset of the symptoms I have had one day where i was almost symptom free. Unfortunately the anxiety around these symptoms is holding me back, even though I know they are benign (thanks to an MRI of the brain) I still have trouble accepting that the symptoms aren't something sinister. This is slowing down my recovery for sure and it's something I'm trying to be mindful of.

 

sounds like the following point:

• Dizziness in response to particular movements, such as turning head from side to side, getting up from a chair, looking up, bending over, lying down etc.. (10)

i get symptoms when look up (head moves back) also when I'm walking if i turn my head left or right i tend to veer off to one side. I also get symptoms like rocking a bit when standing either back and forth or side to side which is the vertgo part of the syndrome at work.

Edit:
And yes I have to admit it is pretty nice finding something who is going through this as well . I'm new around this forum and had never heard of anyone having this (although my psych says its surprisingly common)

 

I agree with your observation. It isn't rare at all. I think it helps people to put a label on it like PPDS, as they are more open to such a diagnosis than more commonly used terms like 'psychogenic' and the seldom accepted 'it's all in your head'.
TMS, or anxiety disorder if you like, has a much broader spectrum of symptoms; PPDS is simply a common combination of certain symptoms. It helped me to read the article, as it enforced my belief that almost any symptom I had was mind driven.

Don't underestimate the self-perpetuating effect in this condition. Key in recovery is to try not let fear about the symptoms rule your world. When you feel a shift or other symptom, try to smile and laugh about it. Tell your mind to give it its best shot, tell it that you aren't impressed. And... give it time... be patient, as it is my experience that it can take a while to dissolve.

 

Thanks Gigalos,

Agree completely. This mirrors much of what I’ve been through with stress disorder to date. And the same mindset/treatment of these symptoms is in order.

I do believe however there is a purely physical element to this as well. Not that a mechanism broke or anything... but much of stress disorder relates to the body actually being worn down. Stress hormones take a huge tax on our bodies when sustained. In fact I think I helped bring on this current bout of ppds by pushing so hard in work/life/exercise etc.

So I think giving the body space to heal does have some merit in this case. (And many with stress disorder). That doesn’t mean hiding away or living in fear. We have to do the best we can to keep a normal look to our day. But I’m finding that when I push too hard, the symptoms push back. When I give it space... I see to see some positive change. It’s s literal depletion of the CNS in my opinion.

This weekend was crazy busy for me and last night I was as dizzy as I have been. So it does seem there is a sweet spot to balancing challenging yourself and overdoing it. Wondering if you had the same experience at all?

I’m the type that will just run myself into the ground if I’m not mindful not to. I sometimes wonder if stress disorder is my brains way of expressing its discontent with that.

 

I agree with you, BinLA. Where some symptoms can disappear in a day, hour or even instantly, other symptoms can take weeks, months or even more than a year to die down. People with a burnout for example need months or even years to get back on their feet. Real physical changes have taken place and some of them need time to reverse. I am not educated enough to tell you exactly what they are though.
Psychogenic symptoms are always a mix of the 'mind' influencing the 'body' and vice versa. Often it is pretty difficult to say which of the two is holding you back at certain point during your healing process, because they are so intertwined.
In essence the mind needs to get out of the 'survival mode' that it is in before positive physical changes can occur, it needs to get in a state where it doesn't need to be hyper-vigilant anymore. This can partly be achieved by convincing yourself that the symptoms are benign, but it may also be necessary to deal with what set it off in the first place; suppression of certain emotions (anxiety, anger, guilt, etc.) that get triggered in certain situations are often at the core of 'psychogenic' symptoms. And then there is the fact that certain things cannot be changed in an instant. I cannot run a marathon when I simply lack the physical endurance and strength, I need time to make the necessary physical changes to be able to do that.

Try to be patient and push yourself to a limit that you feel is right for you. Have faith in what your body is capable off, but be reasonable and kind towards yourself too. Try to not let set backs set you back, as they are normal and sometimes even valuable as you can learn from them. For example, if you get dizziness when you enter the gym, try to figure out why the gym triggers your brain to do that.

I can go on and on, but the point is that recovery is a personal process. Hope you can recover by this PPDS article on its own, if not I suggest to read the program by Alan Gordon to get an idea about what tools there are to make more progress. http://go.tmswiki.org/newprogram (Pain Recovery Program)

To answer your question: Yes, I had the same experience and sometimes still have (mind you, my symptoms nowadays are just a shadow of what they used to be in strength and frequency). Personality is certainly part of the equation. You might ask yourself why you tend to run yourself in the ground, where others are more kind towards themselves and simply stop and take a break. Often a big part is the result of your childhood, the time during which your brain develops itself and creates many mechanisms to deal with certain situations. The good news is that the brain stays plastic during your lifetime, so to a certain extent you can change it. Don't expect that you can change your personality completely, but you can make changes to sharp edges of it by being more mindful for example. You might also want to read one of the books by Steve Ozanich, as in my mind he has a similar personality of pushing through whatever it takes.

that's it, need to eat now

 

Thanks Gigalos,

I'm working through Alan's pain recovery process right now again, just to re-familiarize myself with it all.

I think what is hardest about this for me is having come so far in recovery from so many things in stress disorder. It was a mess of high end symptoms, panic and intense anxeity for years, along with the physical stuff. But, life has improved slowly but surely as I've learnd to let it all be there, try to find space for rest and tried to view it all for what it is. So, to be pulled back by something that has such a "fixed" feel is really tricky. I went from about as good as I've felt in 8 years... to pretty bad, and pretty bad full time. I'm just so used to allowing it all to be there... and having it work itself out. That's what makes this feel more like a phyiscal "injury" or something . Add the fact that it came on when I was straining, and you can see how the mind would have trouble with it.

I initially investigated something called Perilymph Fistula which is a membrane tear which can be caused by lifting/straining. (Though usually more direct head blow or injury.) It shares a lot of the sympotms, but not all... not nearly as many as PPDS and would seem quite rare to be a fistula given all circumstances. But admittedly, my brain is having a bit of a hard time totally letting go of the notion that I may have done soemething physically. I told and ENT... he had nothing to say except "get an MIR" and my wife is in medicine and she isn't concerned with a physical cause given the symptom set.

So, onward we go.

I've had a few times of feeling a bit better. Better energy, this week. But, also some rotational anxiety/deprssion popping up to say hello at random it seems. There seems to be a cycle to it and I'd just guess it's partially due to the longevity. It's been almost 2 months now, without many real "wow" moments of feeling better... and very consistent balance issues/ringing mixed in with the nausea at times.

I suppose it's better than 6 weeks ago though. So, trying to work through it and live life. I'm going to work every day, getting done what I need to.
Hard to feel like you went from being almost recovered to living in this territory again. But there's no script this stuff follows. We have to work with it as it arises.

 

My wife is in medicine and she loacted some literature from a neurologist who specilizes in treatment of dizziness-related disorders/injuries, etc.

Wanted to post it below as it has some very interesting aspects...

(I've pulled exerpts from the entire report which can be found here: https://www.consultant360.com/article/dizziness-step-step-through-workup (Dizziness: Step-by-Step Through the Workup | Consultant360) )

Keep in mind, this is a medical journal for other neuorologists so it's jargony at times.

But in some ways, I found this to be one of the more notable reports from a medical doctor I've ever seen. He's in many ways
stating clearly what many TMS practitioners and anxiety experts have for a long time. (But the medical community either doesn't understand or rejects.)

DOUGLAS J. LANSKA, MD, MS, MSPH
Veterans Administration Medical Center, Tomah, Wisconsin
Dr Lanska is a staff neurologist at the Veterans Administration Medical Center in Tomah, Wisconsin.


Chronic nonspecific dizziness. In the final category, chronic nonspecific dizziness, the dizzy sensation is often a vague giddiness, which is typically protracted or continuous, varying in intensity, and often associated with periodic exacerbations. Although patients may develop anxiety and depressive symptoms in response to any type of dizziness and the associated fears of falling or injury, anxiety is a significant causal factor for many patients with this category of dizziness. Indeed, chronic nonspecific dizziness is often attributed to impaired central integration of sensory and motor signals in patients who have acute and chronic anxiety, although similar findings can be seen in patients with previous well-compensated vestibular lesions.8,9

---

In some cases, additional diagnostic tests will be required. These should be ordered selectively depending on the type of dizziness and suspected underlying etiologies. Unfortunately, studies have suggested that diagnostic testing is often ordered indiscriminately and that the frequency of ordering multiple expensive tests is increasing, particularly in emergency departments.23,24

Brain imaging should not be ordered routinely for dizziness complaints.9,25 The clinical value of CT scans for patients who present to the emergency department with dizziness is very low and appears to have declined over time.23 Patients who are more likely to have abnormal findings on head CT are those with severe headaches or some neurologic deficits in addition to dizziness, whereas those with isolated dizziness, lightheadedness, or monosymptomatic positional vertigo are very unlikely to have acute, life-threatening abnormalities.26 With MRI, in particular, structural abnormalities of the brain and neck are common and nonspecific, and routine MRI is unlikely to identify specific etiologies for dizziness.25


Structural abnormalities are common.... and unlikely to identify or relate to the reported problem.


Where have we heard that before???

 

that's a very nice find, BinLA.