Anyone Diagnosed with PPPD/CSD (Constant Dizziness)?

[Dizzyhead888]

I developed constant sensation of imbalance / heavyheadiness after 2 weeks of my tinnitus onset.

My symptoms look like PPPD/CSD.

Any similar stories?

 

[Samir]

I did have what I would describe as false sense of motion. But it was transient, not constant. This was about a year ago, about 6 months prior to my tonal tinnitus. Before that I had been hearing a faint hissing sound. I have had a similar sensation a few more times since. For me the cause was most likely the acoustic trauma. Loud noises can have a damaging effect on the vestibular apparatus as well, not only the cochlea.

Have you been exposed to very loud noises prior to these symptoms of dizziness? Have you seen any doctor, have you done any tests?

For reference,
PPPD: Persistent postural-perceptual dizziness
CSD: Chronic subjective dizziness

 

[Damiano]

Sorry to bump this old post but I'm quite interested in this.

@Dizzyhead888, I have been diagnosed with PPPD too. It started about 1 month after tinnitus. Together with tinnitus this is a terrible combination, you try to relax lying down and tinnitus freaks you out, you try to get a walk outside to get distracted and you feel like you are falling or wobbling. When you work you are exposed to both and concentrating is extremely hard. May I ask you if the situation improved for you over time?

 

[Dizzyhead888]

@Dizzyhead888, I have been diagnosed with PPPD too. It started about 1 month after tinnitus. Together with tinnitus this is a terrible combination, you try to relax lying down and tinnitus freaks you out, you try to get a walk outside to get distracted and you feel like you are falling or wobbling. When you work you are exposed to both and concentrating is extremely hard. May I ask you if the situation improved for you over time?

Answer is complicated.

PPPD does not improve alone naturally. Needs medications SSRI/SNRI. Those medication are harmful for tinnitus and can have side effects such as fatigue. So in a nutshell, its all about luck. If you are lucky medication would help you without side effects. If not you risk worsening your tinnitus like in my situation.

I am not working. My situation is not good unfortunately. I did have some phases which i was doing better and considered returning to work until another setback.

So I don't know what to advise you to do. If you decide to go on an SSRI, go very very slowly.

 

[Damiano]

Answer is complicated.

PPPD does not improve alone naturally. Needs medications SSRI/SNRI. Those medication are harmful for tinnitus and can have side effects such as fatigue. So in a nutshell, its all about luck. If you are lucky medication would help you without side effects. If not you risk worsening your tinnitus like in my situation.

I am not working. My situation is not good unfortunately. I did have some phases which i was doing better and considered returning to work until another setback.

So I don't know what to advise you to do. If you decide to go on an SSRI, go very very slowly.

Thank you for your reply and sorry to hear you are still struggling.
I don't react well to SSRI, and SNRI are notoriously difficult to get off.
PPPD is probably just a label, they don't really understand what's happening in detail but I had read that sometimes it goes away or can be reduced to a level that is fine for practical purposes.
I hope you can see some improvements soon.

 

[Dizzyhead888]

Thank you for your reply and sorry to hear you are still struggling.
I don't react well to SSRI, and SNRI are notoriously difficult to get off.
PPPD is probably just a label, they don't really understand what's happening in detail but I had read that sometimes it goes away or can be reduced to a level that is fine for practical purposes.
I hope you can see some improvements soon.

What set if off for you (how did it start)? Did you have vertigo attack? Panic attack?
PPPD is not a label. It is a maladaptation (i.e. failing to 100% recover) to an incident that triggered dizziness.

 

[Damiano]

After a big cold I got tinnitus, so probably a ear infection. A few weeks later I got the balance problems. By "label" I meant to say it's not a clearcut diagnosis. They can't see directly the vestibular organ so they go by inference. I agree re: maladaptation. I have a great specialist who explained the condition well. No medication was suggested though. Mostly rehab exercises at the moment.

 

[Joanne Philps]

I'm a bit late to the party, but just want to add to this that SSRI's are not always used to treat PPPD, that was my last diagnosis and whilst the jury is still out on whether it's actually a condition, some refer to it as wastebasket syndrome, personally I'm not convinced, I have bilateral tinnitus that came on a few hours after my rocking vertigo ( that happened as I got off a plane) I saw an audio vestibular physician and he prefers not to use SSRI's, hallelujah!!!! Through VRT at home I'm a lot better, the tinnitus is still the killer and I wear maskers that are a godsend during the day, I do not take any medication, my brain is ( slowly) compensating

 

[IntotheBlue03]

Hello all,

Hoping to bump this thread and get an update on how everyone is doing and your valued opinion on what I'm experiencing. So happy to have found a link to tinnitus and PPPD on here as I suspect mine go together.

I developed severe tinnitus 3 months ago and have been trying everything under the sun as you can see from my profile and post history here on Tinnitus Talk. However, as of a couple weeks ago, the severe tinnitus calmed down to a 1-2 in volume and intensity but I got the PPPD symptoms in its place. I had already been dealing also with severe PTSD that the severe tinnitus triggered but that had started improving once I started Neurofeedback. Now of course that anxiety is creeping back up thanks to the PPPD.

Has anyone had this resolve completely? I've been prescribed a course of Zoloft and Lorazepam but just weaned off Clonazepam for tinnitus and was hoping to avoid the dirty game of Russian Roulette when it comes to SSRIs and Benzos.

Thank you all - @Samir, @Joanne Philps, @Dizzyhead888, @Damiano.

 

[Chinmoku]

Hi @IntotheBlue03, I was also diagnosed with PPPD. It lasted a few months, then resolved spontaneously. It often does. I took no specific medication for it.

I agree with the wastebasket syndrome comment. It's not a diagnosis but a repackaging of symptoms that shows how poor the medicine of the cochlea and vestibular system is.

 

[IntotheBlue03]

Hi @IntotheBlue03, I was also diagnosed with PPPD. It lasted a few months, then resolved spontaneously. It often does. I took no specific medication for it.

I agree with the wastebasket syndrome comment. It's not a diagnosis but a repackaging of symptoms that shows how poor the medicine of the cochlea and vestibular system is.

Thanks @Chinmoku, very happy to hear this resolved for you. I was just more accurately diagnosed with vestibular ocular reflex dysfunction. This has proven to be much more devastating than anything else for me unfortunately. I hope it resolves but I am doubtful.

 

[Chinmoku]

Thanks @Chinmoku, very happy to hear this resolved for you. I was just more accurately diagnosed with vestibular ocular reflex dysfunction. This has proven to be much more devastating than anything else for me unfortunately. I hope it resolves but I am doubtful.

Sorry to hear, but I would take these diagnoses with a pinch of salt. I was diagnosed by three specialists, one said PPPD, a second one said vestibular migraines, a third one told me she didn't believe in PPPD in general but only offered physiotherapy. Then it went away on its own. We don't know much here. I'm not discounting your suffering but I'm wary of these diagnoses that label and repackage a collection of symptoms without offering any insight on the condition. I really hope it solves spontaneously for you.

 

[IntotheBlue03]

Sorry to hear, but I would take these diagnoses with a pinch of salt. I was diagnosed by three specialists, one said PPPD, a second one said vestibular migraines, a third one told me she didn't believe in PPPD in general but only offered physiotherapy. Then it went away on its own. We don't know much here. I'm not discounting your suffering but I'm wary of these diagnoses that label and repackage a collection of symptoms without offering any insight on the condition. I really hope it solves spontaneously for you.

Thank you so much. I hope the same as I feel the BVD symptoms I'm dealing with may be the more distressing symptoms and can hopefully be helped by prism glasses. This has been a triple tragedy for sure.

 

[in_LA]

After a big cold I got tinnitus, so probably a ear infection. A few weeks later I got the balance problems. By "label" I meant to say it's not a clearcut diagnosis. They can't see directly the vestibular organ so they go by inference. I agree re: maladaptation. I have a great specialist who explained the condition well. No medication was suggested though. Mostly rehab exercises at the moment.

How are you doing now? Did it go away on its own?

 

[in_LA]

Hi @IntotheBlue03, I was also diagnosed with PPPD. It lasted a few months, then resolved spontaneously. It often does. I took no specific medication for it.

I agree with the wastebasket syndrome comment. It's not a diagnosis but a repackaging of symptoms that shows how poor the medicine of the cochlea and vestibular system is.

Does it come back to haunt you or have you been dizzy free for years?

 

[Chinmoku]

Does it come back to haunt you or have you been dizzy free for years?

Never came back. The tinnitus, on the other hand, is murdering me.

 

[in_LA]

Never came back. The tinnitus, on the other hand, is murdering me.

How many years have it been since you last had the dizziness? Mine is still ongoing, some days I'm ok, some days I'm dizzier. I noticed sleeping on my right side makes it more noticeable.

 

[Chinmoku]

How many years have it been since you last had the dizziness? Mine is still ongoing, some days I'm ok, some days I'm dizzier. I noticed sleeping on my right side makes it more noticeable.

Almost three years without symptoms now.

My experience is that the Harley Street clinics organized more tests than the NHS, were more thorough, and much more quickly, but these tests are not actionable, and essentially the type of intervention was the same, physiotherapy oriented to balance problems. Rarely they throw in a SSRI but not in my case.

NHS Guy's hospital has Dr. Murdin, who is excellent and has a PhD on these issues. Uclh has Dr. Kaski, very research active neurologist specialized in vestibular issues, and Charing Cross hospital has Dr. Seemungal, who is also a neurologist and research active in vestibular issues.

However, there is no cure, all they can offer is teaching you how to limit the impact of symptoms and how to manage them. Long term, the NHS is the best solution, that is correct, especially if you go to a place like Guy's hospital where they are very well organized for physio. However, it can go away spontaneously, as it did for me. Fingers crossed.

 

[in_LA]

Thanks @Chinmoku, very happy to hear this resolved for you. I was just more accurately diagnosed with vestibular ocular reflex dysfunction. This has proven to be much more devastating than anything else for me unfortunately. I hope it resolves but I am doubtful.

How are you doing now?

 

[in_LA]

Almost three years without symptoms now.

My experience is that the Harley Street clinics organized more tests than the NHS, were more thorough, and much more quickly, but these tests are not actionable, and essentially the type of intervention was the same, physiotherapy oriented to balance problems. Rarely they throw in a SSRI but not in my case.

NHS Guy's hospital has Dr. Murdin, who is excellent and has a PhD on these issues. Uclh has Dr. Kaski, very research active neurologist specialized in vestibular issues, and Charing Cross hospital has Dr. Seemungal, who is also a neurologist and research active in vestibular issues.

However, there is no cure, all they can offer is teaching you how to limit the impact of symptoms and how to manage them. Long term, the NHS is the best solution, that is correct, especially if you go to a place like Guy's hospital where they are very well organized for physio. However, it can go away spontaneously, as it did for me. Fingers crossed.

I think mine started from all the stress i went through with the palinacousis I had. It was strange because it started when I felt like I was bopping my head, but I never had full blown dizziness. Then one day I smoked two joints and was just lying down, when I got up I lost a great deal to my balance and would need to hold on to things.

It was the only time I ever felt unbalanced like that. Afterwards I've just had this residual dizziness. I'm seriously confused. I still get the bopping in the head when I sit, some days more noticeable than others. I've had bad posture for a while, I even gave myself TMJ from it, but the TMJ has largely gone into full remission.

Ironically my palinacousis has gotten so much better but now I have to deal with this. I also have a bad tendency of picking my ears which may not have helped. I do take Viagra but now I take very small amounts, basically just enough to get the job done.

I'm sorry I keep bumping this thread but yours going away gives me hope that mine will get better.

I will say that BPPV maneuvers did help me which leads me to believe I may just have a loose crystal in there. I feel a lot better in the morning for some reason, and I don't get dizzy if I sleep on either side or lying flat.

I never had full blown vertigo, just dizziness. However, I have started developing migraines that I never had before, particularly in one side. It may be related to upper cervical issues due to terrible posture and always being on my phone looking down.

Thanks for giving me hope that it'll just go away.

 

[tniuf]

Almost three years without symptoms now.

My experience is that the Harley Street clinics organized more tests than the NHS, were more thorough, and much more quickly, but these tests are not actionable, and essentially the type of intervention was the same, physiotherapy oriented to balance problems. Rarely they throw in a SSRI but not in my case.

NHS Guy's hospital has Dr. Murdin, who is excellent and has a PhD on these issues. Uclh has Dr. Kaski, very research active neurologist specialized in vestibular issues, and Charing Cross hospital has Dr. Seemungal, who is also a neurologist and research active in vestibular issues.

However, there is no cure, all they can offer is teaching you how to limit the impact of symptoms and how to manage them. Long term, the NHS is the best solution, that is correct, especially if you go to a place like Guy's hospital where they are very well organized for physio. However, it can go away spontaneously, as it did for me. Fingers crossed.

I see you did lots of ENT tests, and you also had dizziness. Have you noticed your dizziness within only a few days of having some of these tests, and if so, have you considered whether it was a direct result of some of these tests?