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

Hard to say what caused my ME/CFS. I was under a lot of stress at the time, and then I got a cold that morphed into CFS. I just never got better until the following year, when I started the Amitriptyline, and it went into remission for many years.

The tinnitus is day by day, for me. Yesterday, I barely heard it, at times. Today, it is raging. So tonight, I will take some Ativan before bedtime and hope I sleep better. I find the better I sleep, the better the tinnitus. Do you find this, as well?

 

Apparently, I was so tired that I misread my results and I actually have severe sleep apnea. Going to get a machine to try at some point.

I wonder how much that has to do with my CFS/ME. A bit coincidental getting glandular fever (mononucleosis) and the tiredness developing at the time.

All fun.

 

Hi all,

I’m not new to this forum, I have been on here for a few years.

I experienced a worsening in my tinnitus 3.5 months ago that makes it so hard to cope.

I’m in desperate need of support because my ears are screaming. I’m also on Xanax every 3-4 days since 3 months. That might also be a factor.

Do you think medication induced worsening can get better? I’m so sad because my ears are so loud. I have 4 kids to care for.

 

@TLion, I am sorry for the troubles you are having right now. I do think it can get better, yes. It has for others as it has for me.

Anything else that may have had an effect on you back then?

Have you seen a doctor or psychiatrist since?

Wishing you well.

 

Yeah, sorry, I wasn’t doing very well.

It all happened when I withdrew from Paxil this summer. The withdrawal was very hard so I reintroduced Paxil after a few weeks. Tinnitus went through the roof but I didn’t understand it was the Paxil. I’m now 3.5 months in with 10 mg Paxil and am in the edge... I have four little kids but really don’t know how to go on.

 

Nothing to apologise for. I understand that Paxil is a tough AD, so take the necessary time to come off of it. Has no one spoken to you about cross-tapering with another antidepressant? I am not sure why this would not be possible with another SSRI - or just crossing over to another one by lowering the dose of Paxil and introducing another one to take its place. A small amount of benzo like Valium may also help if you are no longer taking the Xanax.

Are you seeing a psychiatrist?

 

Unfortunately, a psychiatrist is going to see everything as just a mental issue, that's what they do day in and day out. Doesn't surprise me a bit. Go to a dentist and they will see it as a dental problem, LOL. There's an old joke about this called "the law of the instrument", "the law of the hammer", or "Maslow's hammer".

If all you have in your toolbox is a hammer, you will see every problem as a nail. It's almost unavoidable when seeing any sort of specialists in any field. Just too much reliance on a one sided way of looking at things. Of course, the specialist has a way of putting down people who have a wide range of knowledge, they dismiss them as "a Generalist."

If there is anything like reincarnation, I hope I come back as something like a houseplant. They probably are smarter than your average college graduate human :>{

 

The problem was the reintroduction of Paxil. My tinnitus changed and is now very difficult to handle. I have days when I can only lie in bed and wait till it’s over. And I’m still on the Paxil. And also on Xanax every 3-4 days.

 

But have you spoken to a psychiatrist about changing to another SSRI?

 

No, because Paxil is so difficult to switch from to another one. I couldn’t take it right now.

I’m not an that of a high dosage (10 mg) but my ears went nuts.

 

Have you asked about switching? Are you seeing a psychiatrist?

You just lower one as you introduce and increase the other. And you can take something else like a benzo to help with any effect of reducing the Paxil. I think it could be an option. I did it when I went to a psych hospital. I would think you need to be on something that you are comfortable with.

The fear of the effects of taking Paxil on your tinnitus (and the effect itself) must be cancelling out any benefit. It doesn't seem productive for you...

 

Actually I am in a Psych Ward right now since one week because I was so uncertain about the medication. But they don’t seem to understand the difficulties with the Paxil. They wanted to change it on the spot (10 mg to 0 mg) which is not a good idea with Paxil, to be honest.

 

Nonsense. You are causing your own demise here. Listen to the psychiatrists, taper off Paxil, introduce another drug. Problem fixed.

 

Where are you @TLion? What country?

 

Germany.

I had taken Paxil for 5 years. I have tapered it til Summer 2022 and had the worst withdrawal. That’s why I reintroduced it. All the problems started from the reintroducing. My tinnitus is now soooooo high and unpleasant. My nervous system is still in shock from the tapering.

 

@TLion, I have no wish to argue with you, but it does seem like you need to try something else. I am not sure how long you did not take Paxil, but you tapered off it, so it should not be so long to taper off of it now. You can also replace it with something else. Can you explain the concern to your psychiatrist and ask to taper off over a longer period - a couple of weeks maybe as you introduce something else? Or ask to speak to another psychiatrist in the hospital if you are not comfortable with the one you have?

Have you heard of Dr. Michael Golenhofen? He is an ENT that works a lot with tinnitus and he seems like a nice, understanding doctor (he has a website and I have seen him interviewed online). I don't know if you could try to have a call with him, explain your situation and ask for his advice on medication - perhaps he could send a letter to the psychiatrist/hospital if needed.

I can only suggest that you try these things and take something else if needed whilst you are in hospital. I took higher doses of Valium initially, as you can see in my thread, and it felt as though it saved my life. I do not take any benzos at the moment as I cope much better than I did back then. You need to calm your nervous system and your fear response. Any body movement, relaxation, talking, being with other people who can understand you in hospital right now - it's very important - as is carefully managing your medication.

Keep strong, speak openly and try to find some measure of calm around you.

 

Thank you for your time and answers! I was on Paxil for 6 years. I was off of it for about 2 months, then reintroduced it, unfortunately. I’m on 10 mg since 3.5 months. A time long enough for withdrawal. A few days ago I tried switching to Paxil drops in the Psych Ward, from 10 mg to 8 mg drops. My reaction wasn’t very good, panic etc. So I’m hesitant to switch to another SSRI.

Paxil made my tinnitus so much higher that it feels like overpressure. I really don’t know how to handle it. It’s like a sensation of the nervous system, everything feels overly tensed.

Do I have a chance that after 3.5 months of taking Paxil, tapering off or switching will reduce the tinnitus?

 

@TLion, you know yourself what is driving this: "My reaction wasn't very good, panic etc."' "It's like a sensation of the nervous system, everything feels overly tensed." It is not the medication changes that are causing this perceived increase in the tinnitus - it is your fear response. And I don't believe that 3.5 months at 10 mg of Paxil would require a long taper.

I get the fear. I was there myself. I did not want to touch another drug. But you are taking something now that is not helping. Lowering Paxil from 10 mg to 8 mg is not the cause of increased anxiety. I think you need to try something else to provide some calm. Are they giving you any other meds there?

For me, absolutely. Time, on its own will help. Coming off Paxil should help on a psychological level. Mixing with other people and spending less time focused on your tinnitus will help.

 

I’m on Dipiperon (Pipamperone) for the night, Ambien (Zolpidem) for a week or so, and Paroxetine 10 mg. I usually have 2-3 days that are manageable, followed by a day when I can’t do anything but stay in bed because the ringing is so intrusive. It’s gradually developed to this state during reinstatement of Paxil. Feels like my life is over. I have 4 little kids to care for...

 

I read an article just yesterday about sleeping, brain, and how it could be the key to tinnitus disappearing

I could not agree more as, like for lots of people, some of my tinnitus could disappear for a day or be hell for a day depending on how I wake up, meaning my brain was doing something while I was asleep.

I hope you get better.

Also I feel like my life has come to an end right now. Just after I turned 30 and just before buying my first apartment.

But, this already happened once before. So I try to push myself, thinking I already survived it once, I can do it twice. I always feel it's a losing battle but I also find that last time, I let tinnitus won, by giving up and that's how I actually won...

 

Do you know why you are taking an antipsychotic plus an antidepressant? Any reason why you have not been given a benzodiazepine?

Your life is not over. I was there too. What happens during those good days? What do you do? Do whatever relaxation programs you can. Speak to others. Focus on them and their lives when with them. Can you watch some TV? Are there some board games there?

You're not alone.

 

I’m also taking Xanax every 3-4 days (today 1 mg) but it doesn’t seem to help. On the good days I try to be distracted. But on the bad days I can’t do anything but lie in bed with crickets masking.

How loud is your tinnitus? Mine is moderate, but it can be severe and intrusive, cutting through.

I also seem to still have withdrawal symptoms from tapering Paxil the first time. My nervous system still feels shocked. If I take a nap in the afternoon I wake up with panic and anxiety big time. This happens every single time. It’s like exploding head syndrome without the actual exploding sensation. And on top is the tinnitus.

 

Wow, I'm surprised to see how many people who have tinnitus also have ME/CFS. In my case the CFS (or rather PVFS since it only lasted a year) started after a COVID-19 infection, and the tinnitus showed up two months later.

Yes, many pathogens can cause ME/CFS, the reason why some people develop it after Mononucleosis, COVID-19 or a tick bite (Borrelia/Lyme) is thought to be related to the person's genetics (we all have strong or weak alleles against different pathogens) and the state of their immune system at the time of contracting the infection.

There's a very interesting peer-reviewed paper from an ME/CFS patient who was a medical student and couldn't finish his studies due to the illness, but he has put all his efforts into trying to unravel the reason behind this horrid disease. He's also now involved in a clinical study that tries to find a biomarker for ME, which is what patients desperately need in order to be believed by their doctors since currently there's no way to prove you have it and 99% of doctors don't even believe the disease is real.

Here's the study if you want to have a look at it (published in 2021 so pretty new):

Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

 

Since last night I’m now on Atosil (Promethazine) instead of Pipamperone. Sleep was great but the tinnitus is loud.

 

I now read that Promethazine has also the potential of worsening tinnitus which could explain why my tinnitus is through the roof today. Did I mess up again?

 

I prefer Valium. Are the psychiatrists there against taking too much benzo? I needed high amounts to help break my racing thoughts and anxiety.

My tinnitus was never loud - moderate at its worst, though I did have one sound that was like a chainsaw which was pretty horrible. It was the fear that was killing me, the view that I could live like that; that everything was over. That constant anxiety, that constant telling yourself that it is unbearable, that constant attention; constant hypervigilance. That is what is most likely causing your tinnitus to "rage" or for your brain to register it as louder right now.

Again, try to get away from it. If you can manage to have an ok night of sleep, can you not get out to speak to others and do some activities - even if you need to have some background sounds like crickets?

I do not know about the effects of Promethazine. You will have to stop, try to calm down and think whether the noise is worse. If you feel that is clearly is, then say it to your psychiatrist and ask if you can try something else. But the rest of the time, try to let go and to focus on other things.

Are there some interesting therapies you can do there? What are the other patients like?

 

Thanks for your answer.

I’m on Xanax on and off every 3-4 days since 3 months. So the doctors here don’t want to give me high doses of another benzo but to get me down from Xanax. I’m very anxious that I’m already dependent on Xanax because I’ve never been a week without it since 3 months.

@Lane, I found your posts about Promethazine. Did I mess up by taking it? My tinnitus seems louder today but I’m not panicking as much as I was when I took Pipamperone for sleeping. I’m very uncertain if I should take the Promethazine today or just take the Ambien and speak to the doctors tomorrow.

 

They seem very conservative. You are not addicted to Xanax from 3 months of taking 1 mg every 3-4days. You are not going through severance, you are are there to treat anxiety from tinnitus. Just my opinion.

 

Hi @TLion -- A single dose of Promethazine on February 4, 2018 gave me chronic tinnitus. -- So sorry to hear how much you're struggling, especially with 4 little ones to take care of.

 

@TLion, no, I think, given your struggles, it is helpful. You may be better off with extended release or a longer one like Clonazepam.