I'm at a Sleep Clinic — Dead Tired and Sleep Forever

[Uklawyer]

I'm at a sleep clinic to see if there is any other reason why I am dead tired all of the time and sleep forever (between waking up in the night and being aware of my tinnitus, drifting in and out of sleep and having different dreams in between).

I said that I am taking an antidepressant and know that that can trigger tinnitus. Guess what the response of the doctor was?

 

[ajc]

I said that I am taking an antidepressant and know that that can trigger tinnitus. Guess what the response of the doctor was?

Probably something uncaring and generalizing.

What tests are they giving you? Sleep apnea test?

 

[Uklawyer]

Yes - testing for sleep apnea. I told my psychiatrist that I sleep a lot and I'm tired and have ME/CFS - and I don't know if medication I take makes it worse.

Anyone else to guess the doctor's response?

 

[Ken219]

I said that I am taking an antidepressant and know that that can trigger tinnitus. Guess what the response of the doctor was?

Stop taking the medication?

 

[IntotheBlue03]

Yes - testing for sleep apnea. I told my psychiatrist that I sleep a lot and I'm tired and have ME/CFS - and I don't know if medication I take makes it worse.

Anyone else to guess the doctor's response?

I can only guess it was some form of patient blaming as that seems to be a favorite go to amongst these cold clowns. I hope you get some relief @Uklawyer. It's enough dealing with tinnitus.

 

[Uklawyer]

Probably something uncaring and generalizing

Generalising, yes.

Stop taking the medication?

Nope.

some form of patient blaming

Not blaming. And thanks.

I'll wait for another guess, then tell. Pretty obvious and not very exciting...

 

[DimLeb]

I told my psychiatrist that I sleep a lot and I'm tired and have ME/CFS - and I don't know if medication I take makes it worse.

I just returned from a psychiatrist appointment for an unrelated reason (not to help me with tinnitus/ear stuff). I told him my story with it all and asked him for educational reasons, if he has any tinnitus patients or if he can suggest anything that helps the actual problem (reducing the symptoms).

All he had to say was that he also had tinnitus for a long time, and maybe it's me that I give tinnitus too much attention, compared to other people who don't care at all and I don't need to look it up on Internet etc... I was like "Yeah, sorry that I annoyed you with my common sense and logic."

It's frustrating how easily they baptize an organic disorder as an anxiety/panic one, just because there is no treatment for it.

 

[Uklawyer]

I was like "Yeah, sorry that I annoyed you with my common sense and logic."

So funny!

When someone tells you they have tinnitus, you really want to know about it and understand (naturally) their experience of it and if they found ways to cope with it or if it got better/disappeared and any insight they can provide in relation thereto (that's lawyer language ). You feel like smacking them when they tell you they have it (or had it) and then totally gloss over it without providing any supplementary information whatsoever.

BTW - I don't know why I said "psychiatrist" - I was referring to the doctor (probably neurologist) that came in to ask me a couple of questions relating to sleep and medical history.

It's frustrating how easily they baptize an organic disorder as an anxiety/panic one, just because there is no treatment for it.

This is a more interesting question for me. I really wonder if it can be purely psychosomatic (or neurosomatic as I like to call it). Lots of people claim it came on during a stressful period with no apparent cause. Can a state of mind interrupt the biochemistry of the ear or of the auditory pathway? And can that resulting pathology be reversed if that state of mind can be. I think I just described neuroplasticity...

 

[DimLeb]

that's lawyer language

Fun fact: I also finished my lawyer diploma, but I haven't (nor I really want to) started working as one because of music production and then the ear problems lol. I appreciate and try to use nice vocabulary too!

I don't know why I said "psychiatrist" - I was referring to the doctor (probably neurologist) that came in to ask me a couple of questions relating to sleep and medical history.

Sorry that I hijacked your post, as my experience now seems a bit unrelated to initial post. My sleep is also very broken, with many (3-4) wake ups during the night and vivid dreaming (which I find it quite nice, to be honest). Even though I don't have that much anxiety about tinnitus anymore, I think it's difficult to break the habits however they formed (due to anxiety, stress etc). And I don't know how to break bad sleep habits, unfortunately.

Lots of people claim it came on during a stressful period with no apparent cause

Yeah all those are interesting questions and I'd like to find an answer sometime. However, I totally believe that stress alone can't trigger all these ear problems. Everyone lives in stress. To me, it happened during a period when I was happy and creative, with music, videos, doing YouTube etc. All good stuff. It's just that something breaks in the hearing pathway, due to idiopathic or external causes (acoustic trauma, medication etc).

Sorry to say, I also don't think neuroplasticity plays any role. I imagine tinnitus and all as a pain in the waist or a headache. There is some neuro process going on trying to fix the problem (since neurons are also living flesh), but not having to do with any cognitive process.

 

[BuzzyBee]

All he had to say was that he also had tinnitus for a long time, and maybe it's me that I give tinnitus too much attention.

Yeah, there's the patient blaming.

Tinnitus Week started today. Kent Taylor has been on my mind. He was a productive member of society who didn't sit around trying to fix tinnitus all day long. He had a life, a family, a business, and was tortured by his auditory system to the point he felt he had to take care of it himself. So for all you health professionals out there who think we're just a bunch of babies who can't stop Googling our symptoms, maybe take a moment to think about Mr. Taylor. Do your job. Take some time to read the literature. Look at the latest research. Stop treating your patients like garbage.

 

[DimLeb]

@BuzzyBee, exactly... All these disorders are real problems and they are still dealt as "overthinking" or "obsessions". Even from people who they have tinnitus themselves (or so they say). I always suggest all the doctors I have visited that they should look into this upcoming drug and that promising new research etc, but all I have gotten is disbelief looks and "meh I don't think that's happening". It's really heartbreaking...

 

[Bruce NH USA]

I'm at a sleep clinic to see if there is any other reason why I am dead tired all of the time and sleep forever (between waking up in the night and being aware of my tinnitus, drifting in and out of sleep and having different dreams in between).

I said that I am taking an antidepressant and know that that can trigger tinnitus. Guess what the response of the doctor was?

I also have ME/CFS and my PCP calls it depression. I don't think he really believes it exists.

Most doctors don't really believe that AD's have oto-toxic properties, so my guess is that you were told it isn't the AD, it's something else. Doctors also would typically say that AD's only cause temporary tinnitus as a discontinuation syndrome and resolve quickly. Again, they don't get it.

Interestingly, I saw a top tinnitus specialist in Boston (USA), today, and he suspects my big tinnitus spike (3 months and counting) is related to my Moderna COVID-19 booster in November and should resolve to baseline in 6-12 months. I've had very low-level tinnitus for decades (like a 1 or 2 out of 10, currently at an 8 or 9). So I hope he's right...

Oh, and by the way, the only thing that helps me sleep is Lorazepam. Due to being a benzo, I only take it twice a week, and never back to back. The other five nights I get lousy sleep and am a zombie, the next day...

 

[kingsfan]

All he had to say was that he also had tinnitus for a long time

He probably only hears it in dead silence and is easily masked by every day sounds. Yea I had that for nearly two decades. It's not the same thing as severe tinnitus.

 

[Uklawyer]

Fun fact: I also finished my lawyer diploma, but I haven't (nor I really want to) started working as one because of music production and then the ear problems lol. I appreciate and try to use nice vocabulary too!

Well I hope you can get going and enjoy a fun music career. Let me know when you are famous so I can join you! If not, you can always do something with entertainment law!

And I don't know how to break bad sleep habits, unfortunately.

Temporary sleeping pills? Meditation?

Re stress, I think in some people that the nervous system can just break down in some way. Stress causes heart attacks, affects sleep and our mental state. So I think that, given the mind-body connection, an unhealthy mind can certainly affect the nervous system - and, therefore, the auditory system. How it does so (issues with bloodflow, affecting chemistry in nerve cells, lowering immunity or causing inflammation) is, for me, the question.

And there are interesting studies on pain management and signalling and parts of the brain that process pain and how the brain can rewire itself to reduce the memory given to that pain. Looking at how something acute becomes something chronic is pretty interesting. Essentially, it all comes from the brain, so this is the area that needs to be addressed as part of removing the percept of tinnitus.

Keep positive @DimLeb.

 

[Uklawyer]

so my guess is that you were told it isn't the AD, it's something else.

BINGO! It cannot possibly be the AD.

In my case, I am hoping that it was not the AD, because I had a shitty year going from one AD to another and blaming myself, and the doctors and psychiatrists that suggested doing so without thinking about the possibility of stress. I kept running the whole scenario back and wondering how I got to that point of, essentially, poisoning myself for life.

I just don't know whether medication aggravated the tinnitus. I don't know how it arrived in the first place. Stress? Noise-cancelling headphones? Wearing a headband with earphones in for sleep? Long-term use of medication? Guess I am not alone in that uncertainty.

I am sorry that you have ME/CFS @Bruce NH USA. It's a nasty one and so debilitating. I think some doctors have a god complex and, if they don't have an answer, they will put the problem down to depression (despite not being psychiatrists or psychologists). I do not know why some of they stubbornly persist in refuting the basic principle that something can happen in the body that then triggers a neuro-immune response, which can then push these systems out of sync and lead to dysfunction in the body. Again, it's a mind body thing. The brain is involved, but that does not mean that a person has to be clinically depressed.

@Bruce NH USA - did you not have an appointment a month or so ago to find out about something else to do with the tinnitus? I remember asking if you would report back on it...

 

[Bruce NH USA]

@Bruce NH USA - did you not have an appointment a month or so ago to find out about something else to do with the tinnitus? I remember asking if you would report back on it...

I have had two appointments about my tinnitus with noted specialists in Boston (USA). They both think my spike in tinnitus is from the COVID-19 vaccine, and that there is a very good chance that it will resolve in a 6 to 12 month time frame. But they don't know for certain because this is all so new. I received two jabs of Pfizer with no issues, but one jab of Moderna as a booster. So frustrated.

I'm also on the waiting list to see Dr. Donna Felsenstein, who is a noted CFS doctor here in the States. I have been on the list for over a year, so hopefully it is soon. She probably will recommend an SSRI... you can't make this stuff up!

 

[Uklawyer]

She probably will recommend an SSRI... you can't make this stuff up!

Lol. So you suspected that Paxil made tinnitus worse, but tinnitus doctors believe it was the Moderna vaccine? Did they say anything about antidepressants and tinnitus?

 

[Bruce NH USA]

Lol. So you suspected that Paxil made tinnitus worse, but tinnitus doctors believe it was the Moderna vaccine? Did they say anything about antidepressants and tinnitus?

Initially, I felt it was the Paxil. The problem is that I had the vax the second day I took Paxil, so they were concurrent. Did Paxil exacerbate the vax, or vice versa? Was it just the vax?

I have spoken with at least a half-dozen doctors, from my PCP to psychiatrists to ENT specialists. They all say that 10 mg of Paxil three days in a row, then stopped, should not cause the spike in tinnitus.

We do, however, have documented instances of tinnitus spikes occuring due to the COVID-19 vaccines. Interestingly, in the UK, tinnitus is actually acknowledged as a side effect. In the US, they will not admit it. Hmmmmm.

I will also say that I restarted Amitriptyline for sleep. I took it for years for CFS, and initially, 32 years ago, it gave me a full remission. It doesn't do that, now, but it does help me sleep and feel less edgy. It's a good drug and not known to be ototoxic, FYI.

 

[Uklawyer]

@Bruce NH USA, I wouldn't spend any time trying to establish the cause, but I suspect it may also be the vaccine, for what it's worth. There are, indeed, many reports of tinnitus after taking the vaccine, so it would be the more likely candidate. Strange the US won't admit that tinnitus is a side effect of being vaccinated. Concern about anti-vaxers I guess - but it is not helpful to withhold information from the public.

You say that Amitriptyline put your CFS into remission? I have never heard that before. I know is is taken at night and can have a slightly sedating effect, but I'm not sure how that alleviates symptoms of CFS, other than helping to promote better sleep. How did you get CFS? Hopefully, it can have a beneficial effect on your tinnitus also. Fingers crossed!

 

[DebInAustralia]

You say that Amitriptyline put your CFS into remission? I have never heard that before. I know is is taken at night and can have a slightly sedating effect, but I'm not sure how that alleviates symptoms of CFS, other than helping to promote better sleep. How did you get CFS? Hopefully, it can have a beneficial effect on your tinnitus also. Fingers crossed!

Amitriptyline is meant to be a potent anti-histamine.

 

[Uklawyer]

Amitriptyline is meant to be a potent anti-histamine.

@DebInAustralia, are you saying that the antihistaminic effect explains why you can feel tired taking Amitriptyline - so that's why it can help with sleep?

 

[Derek26]

Antidepressants don't cause tinnitus?

 

[Uklawyer]

@Derek26, correct! But @Bruce NH USA beat you to it! He gets first prize, um... access to a tinnitus neuromodulator device once I've successfully used it. You are 2nd in line to use it!

 

[Lane]

Re stress, I think in some people that the nervous system can just break down in some way. Stress causes heart attacks, affects sleep and our mental state. So I think that, given the mind-body connection, an unhealthy mind can certainly affect the nervous system - and, therefore, the auditory system. How it does so (issues with bloodflow, affecting chemistry in nerve cells, lowering immunity or causing inflammation) is, for me, the question.

Hey @Uklawyer - From my many years experience of living with and researching ME/CFS, it seems pretty apparent to me that not all brains and neurological systems are created equal. This plays out in the degree that CFS affects a person's life, and I think it's the same way for anybody dealing with tinnitus and/or hyperacusis. The reaction is going to be be highly individualized, based on some core things going on in a person's body, and/or psyche for that matter.

I read a book many years ago called "Adrenal Syndrome" (a term the author used to describe CFS). A lot of the book touched on the residual resiliency of people's adrenal glands as they respond to life's stresses. Very low resiliency often resulted in months/years of chronic debilitating exhaustion following a stressful event(s) in their lives. Very high resiliency indicated essentially the opposite. The author broke this down into some rough numbers:

25% of people have low resiliency, meaning normal life stressors will often send them into some degree of a tailspin.

25% of people have high resiliency, meaning that no matter how severe a stressor comes into their lives, they will be able to cope without becoming debilitated to any degree.

50% of people fall somewhere inbetween.

I believe there are some kind of corresponding numbers for a person's brain and neurological resiliency as well, which can greatly affect the ability to cope with tinnitus. I believe adrenal resiliency also plays a major role in our ability to cope. -- BTW, the highest concentration of Vitamin C in the body is found in the adrenal glands. Also, BTW, I knew the answer to your question in your initial post right away. I've been around the block a few times in dealing with conventional health practitioners.

 

[Uklawyer]

it seems pretty apparent to me that not all brains and neurological systems are created equal.

@Lane, "neurological and immune" I believe. We are, indeed, all different, but share many common traits - and with epigenetics, scientists are finding more ways to find these common traits and, hopefully, to treat illness. Regardless, I hope that, in the case of tinnitus, we are looking at creation of sound through the auditory system that be tracked to a specific part of that system - hopefully the DCN - and that, therefore, no matter where the issue originates (IHCs, OHCs, ribbon synapses, auditory nerve), nor where it is processed, we will all find relief in from the same place (or different places if different approaches like drugs and neuromodulation can be used to achieve the same outcome).

Out of interest, did you ever come across the theory that ME/CFS is caused by EBV? I had glandular fever, so makes sense to me in part, but some people (e.g. Anthony William) think that it comes from EBV proliferating in the body and hiding in places where it is undetectable through current testing.

Also, BTW, I knew the answer to your question in your initial post right away. I've been around the block a few times in dealing with conventional health practitioners.

I daresay you did - but you didn't respond fat enough. So you have to settle for being third in line for my device .

Be well.

 

[Lane]

Out of interest, did you ever come across the theory that ME/CFS is caused by EBV?

Yes, in fact, in the beginning of the CFS saga in the early 1980's, the evidence appeared so strong that EBV was the culprit, that it was often referred to CEBV, Chronic Epstein Barre Virus, or something like that. When they later discovered other viruses can also cause it, they began referring to it as CFIDS, Chronic Fatigue Immune Dysfunction Syndrome, which I think is likely a more accurate term than CFS, and perhaps even more accurate than the current ME/CFS.

What I've noticed over the years is that just about anything that traumatizes a person can bring on ME/CFS. I think the main culprit is the immune system becomes compromised by that trauma in some manner. I think we're all swimming in an ocean of microbes, most of which have yet to be discovered by modern science. When a person's immune system is healthy, these microbes are non-factors, and are easily tolerated, expelled or in some manner or another, taken care of, or eliminated. I think a person's ability to deal with stress is a very important factor in this whole scenario.

Interestingly, what really helped me turn the corner on ME/CFS was discovering a thoracic extension exercise I found on YouTube. I began to see significant improvements within just 3-4 days. The following :37 second video shows how a rolled up towel or foam piece can be used for the upper thoracic area:

Thoracic Towel Stretch

Below is a link to a 5-minute video which goes into more detail on how to use a towel or foam piece to loosen up the upper back:

The Simplest and Most Effective Exercise For Thoracic Extension

I don't know exactly why this was so effective for me (which took me from 20-25% functionality for about 30 years, to about 75%). But I suspect it's because the nerve supply that runs from these vertebrae goes directly to the top part of the GI tract, which is primarily where the immune system of the body is located. I do know that in some kind of indefinable way, my immune system felt stronger and more resilient after starting this.

I think there are other factors involved in immune system health that should always be considered, such as diet, exercise, etc. But in my case, it appears improving the nerve supply going to my immune system area was key.

 

[Bruce NH USA]

@Bruce NH USA, I wouldn't spend any time trying to establish the cause, but I suspect it may also be the vaccine, for what it's worth. There are, indeed, many reports of tinnitus after taking the vaccine, so it would be the more likely candidate. Strange the US won't admit that tinnitus is a side effect of being vaccinated. Concern about anti-vaxers I guess - but it is not helpful to withhold information from the public.

You say that Amitriptyline put your CFS into remission? I have never heard that before. I know is is taken at night and can have a slightly sedating effect, but I'm not sure how that alleviates symptoms of CFS, other than helping to promote better sleep. How did you get CFS? Hopefully, it can have a beneficial effect on your tinnitus also. Fingers crossed!

Yes, Amitriptyline (45 mg at night) got me into remission, 31 years ago. Mind you, I was only 28 years old, at the time, so I think youth had something to do with it. I also was getting married, and had a very positive outlook on life.

I kept taking the Amitriptyline for the next 24 years, albeit at only 20 mg a day, and finally 10 mg at night. In 2015 I stopped taking it.

It helped me sleep in 2020/21, which was huge. Then I got off of it, again.

I find Amitriptyline to be a pretty mild drug and very effective for sleep, which is rare. Not a benzo, a Z or hypnotic, so it can be taken long-term.

Not sure how I got CFS, initially, but I do know that stress absolutely played a huge role. I now am working with medical providers who specialize in stress management and reduction.

I also just got my appointment with Dr. Felsenstein for April 27. So I'm hoping that will help. Dr. Grundfast (ENT) thinks that the tinnitus could be an auto-immune response, which seems to be a part of CFS, as well, so maybe I can he this all wrapped up in the spring. That's my hope, anyway!

How is your CFS going, lately? Has it been worse during COVID-19?

 

[Uklawyer]

@Bruce NH USA, what was the cause of your tinnitus when you were 28 years old?

My CFS was fine during confinement - but my tinnitus first became apparent round about when it was first imposed (March 2020). Since it got worse in December 2020, the CFS wasn't much worse, but I did stop working and did not look for further work because of the state I was in. I went to a hospital in February 2021 and, whilst taking Valium, was sleeping 11-12 hours there. It got a bit better when I got off of the Valium, but I retook some Valium after and a couple of months ago I started to feel pretty exhausted, even when sleeping c.11-12 hours a night. But with tinnitus, you think about it when going to bed; you become aware of it when waking in the night; and you become aware of it when you wake up. Sleep is a bit broken and it is hard to gauge the quality of the sleep. Sleeping in the hospital for this sleep test was awful, but we will see if they come with anything. My guess is that they will not - it's ME, what can you do?

 

[Bruce NH USA]

@Bruce NH USA, what was the cause of your tinnitus when you were 28 years old?

My CFS was fine during confinement - but my tinnitus first became apparent round about when it was first imposed (March 2020). Since it got worse in December 2020, the CFS wasn't much worse, but I did stop working and did not look for further work because of the state I was in. I went to a hospital in February 2021 and, whilst taking Valium, was sleeping 11-12 hours there. It got a bit better when I got off of the Valium, but I retook some Valium after and a couple of months ago I started to feel pretty exhausted, even when sleeping c.11-12 hours a night. But with tinnitus, you think about it when going to bed; you become aware of it when waking in the night; and you become aware of it when you wake up. Sleep is a bit broken and it is hard to gauge the quality of the sleep. Sleeping in the hospital for this sleep test was awful, but we will see if they come with anything. My guess is that they will not - it's ME, what can you do?

I developed CFS when I was 28. I have had the tinnitus for many years, just at a low level.

I played in loud rock bands when I was a teen, but did wear hearing protection. I had a few incidents when I forgot my plugs, or walked into a loud situation, unknowingly, and lost some hearing, there.

My hearing, all in all, is pretty good for an old fart entering his 60th year. My new hearing aids do help, though.

As for tinnitus, I am starting to hear it less and less, as it has been three months. It is a struggle, but it is less of a factor at night, these days, and I try to ignore it, during the day----basically the habituation process. I have had very low-level tinnitus for years and it didn't affect my health, so why let it affect me, now?

Still, it is annoying and I want it to abate, which it might, if it was the vax.

Do you still take the Valium? I will take Ativan, in occasion, if I need a really good night's sleep. Only .5 mg, and only once a week or so...

 

[Uklawyer]

I developed CFS when I was 28. I have had the tinnitus for many years, just at a low level.

Sorry @Bruce NH USA - that's what I meant. What was the cause of your ME? (Sorry, brain fog and all that, as you know ).

Good to know that it is becoming a bit better. Would you say the volume has lessened at all?

I do still take Valium. I tapered down to zero when I came out of the hospital in April of last year. Then, in October time, when I was still finding life hard, my psychiatrist (and family) suggested that I change antidepressant and take 10 mg Valium at night to help me. Since then, I have cut down again, and am currently on about 1 mg at night. Still sleep for forever. Worst is when I wake up in the night sometimes and am exhausted, with head buzzing that makes me feel like I'm in a hellish place.