Tinnitus and Now Visual Snow Syndrome and Extreme Insomnia for 3 Months: Please Help!

[Roserosie]

Gosh I wish I was writing some success story here but things are going from bad to much worse for me and I am at my wits' end. Seem to have developed visual snow syndrome (the afterimages and flickering vision and closed eyed visuals are the most disturbing. Saw a neuro-ophthalmologist - nothing wrong with my eyes.

However the most awful symptom at the moment is insomnia - I cannot sleep more that 2hrs a night if I am very lucky. I am also so anxious/agitated that I cant even lie in bed. I have tried - Phenergan (got tolerant after 2 doses and didn't work - scared it actually caused the visual snow) Valium and Temazepam (have taken 10 times- spaced out - but now have crazy tolerance - 10mg of Valium gave me 1 hour of sleep, then woke up with a panic attack.) My psychiatrist prescribed Seroquel - took 12.5mg - didn't work but had crazy hypnagogic hallucinations but no sleep, the tried 25mg the same result but worse (had an insane panic attack and wanted to die) and I think since then my visual snow is worse. I am also doing Feldenkrais, meditation, lots of hypnosis, and just started EMDR and yoga all to get my anxiety under control. I go for a bushwalk everyday.

Does anyone know of any reasonably safe medications I could take to help with my anxiety and insomnia? Very scared about the anti-psychotics making things worse. Also Remeron seemed good - but now I am scared that its MoA is similar to low dose Seroquel (antihistamine action) and could make the visual snow worse. I suggested Amitriptyline to my psychiatrist but he didn't think it would be good - however looking online it seems to be quite effective for insomnia.

Longing for the days when I "only" had tinnitus.

 

[Kendra]

The only thing I could think of would be Benadryl. But you're not supposed to take it long term. It might help in the meantime though.

 

[Bill Bauer]

Does anyone know of any reasonably safe medications I could take to help with my anxiety and insomnia?

I used to take Amitriptyline and it has helped me to fall asleep. It also didn't make me feel drowsy the next morning.

Have you tried playing nature sounds to give yourself something else to listen to besides your tinnitus?

 

[Orions Pain]

I'm sorry you're dealing with all this. I have visual snow too so I know how it is and how intrusive it feels to have your vision affected

I've struggled with insomnia a bit and at the time Benadryl and Melatonin helped me a lot. I'd still wake up 4 times a night but at least I got some sleep. Honestly the only thing that has helped me is tiring myself out during the day. I wake up super early, make sure to get exercise in and my sleep has improved drastically. Are you tiring yourself out enough during the day?

I was at my worst when I spent all day in bed due to being depressed over tinnitus and visual snow. Not sleeping but just laying around looking at my phone and once I changed that sleeping got easier. I hope you find whatever works for you! Hang in there.

 

[Roserosie]

The only thing I could think of would be Benadryl. But you're not supposed to take it long term. It might help in the meantime though.

I think Benadryl is similar to phenergan? Both antihistamines?

 

[Roserosie]

I used to take Amitriptyline and it has helped me to fall asleep. It also didn't make me feel drowsy the next morning.

Have you tried playing nature sounds to give yourself something else to listen to besides your tinnitus?

I asked the psychiatrist about Amitripyline but he said he doesn't think it would work...!!?? I would like to try it at least as it is a drug that I have taken in the past and I think it has even been used to treat VS. Unfortunately its going to take me 2 weeks to see a GP to try and get a script... hopefully i can hold on for that long.

 

[Roserosie]

@Orions Pain
Yes I do do a lot of exercise the other week I went skiing for 5 days (still hardly any sleep - but since the nthe onset of the VS) and I do a bush walk everyday but I suppose I could do more cardio. Hard when you feel like you have been run over.
I have tried Melatonin 300microg and 1mg extended release - it helped me fall asleep but I woke up both times an hour later with a panic attack and unable to sleep the rest of the night. (pretty much what happens every night for me now.) Wondering if it would be a good idea to take more when I wake up? Have you tried that? I don't think there is anything wrong with my circadean rhythm - I get very sleepy at nightime I just start wake up with my heart pounding and shaking and very agitated and can't stay in bed.

 

[Orions Pain]

@Orions Pain
Yes I do do a lot of exercise the other week I went skiing for 5 days (still hardly any sleep - but since the nthe onset of the VS) and I do a bush walk everyday but I suppose I could do more cardio. Hard when you feel like you have been run over.
I have tried Melatonin 300microg and 1mg extended release - it helped me fall asleep but I woke up both times an hour later with a panic attack and unable to sleep the rest of the night. (pretty much what happens every night for me now.) Wondering if it would be a good idea to take more when I wake up? Have you tried that? I don't think there is anything wrong with my circadean rhythm - I get very sleepy at nightime I just start wake up with my heart pounding and shaking and very agitated and can't stay in bed.

Oh I'm sorry I totally agree that it's so hard to force yourself to do anything exercise related when this occupies pretty much all your energy!

If your problem isn't necessarily not being able to fall asleep, but the issue of staying asleep and waking up in a panicky state - it sounds to me like the goal would be to address the anxiety? When my tinnitus first started I was in a horrible state and probably got 3 hours of sleep a night. No issue with falling asleep but would wake up due to anxiety and my heart racing. This only resolved as I got my stress/anxiety in control which only time improved.

I was and still am very reluctant to take any sort of medication especially things that tend to help stress/anxiety (anti-depressants and benzos).

I still to this day take 10 mg of Melatonin.
Sometimes I'll also take it with Valerian root which is a natural supplement for anxiety.

Glycine is also an awesome supplement with many benefits. It boosts seratonin production which has links to Melatonin production so it helps you sleep, and it also has "neuro" related effects and can help calm you down. I also take this almost every night with my Melatonin. If you're interested I'd read up on it! A family friend in the medical field recommended it to me.

Something that didn't work for me at all was CBD oil and I got a pretty good, super potent one.

When I've woken up in an anxious state I found that laying there in the dark trying to fall asleep only agitated me more and I felt even more anxious. I'd usually get up, take a quick hot shower, and turn on a light and a tv show. Instead of laying there panicking in the dark I felt so much better mentally with a calm tv show and my lights on.

 

[Kendra]

I think Benadryl is similar to phenergan? Both antihistamines?

Yes Benadryl is an antihistamine.

 

[JasonP]

Gosh I wish I was writing some success story here but things are going from bad to much worse for me and I am at my wits' end. Seem to have developed visual snow syndrome (the afterimages and flickering vision and closed eyed visuals are the most disturbing. Saw a neuro-ophthalmologist - nothing wrong with my eyes.

However the most awful symptom at the moment is insomnia - I cannot sleep more that 2hrs a night if I am very lucky. I am also so anxious/agitated that I cant even lie in bed. I have tried - Phenergan (got tolerant after 2 doses and didn't work - scared it actually caused the visual snow) Valium and Temazepam (have taken 10 times- spaced out - but now have crazy tolerance - 10mg of Valium gave me 1 hour of sleep, then woke up with a panic attack.) My psychiatrist prescribed Seroquel - took 12.5mg - didn't work but had crazy hypnagogic hallucinations but no sleep, the tried 25mg the same result but worse (had an insane panic attack and wanted to die) and I think since then my visual snow is worse. I am also doing Feldenkrais, meditation, lots of hypnosis, and just started EMDR and yoga all to get my anxiety under control. I go for a bushwalk everyday.

Does anyone know of any reasonably safe medications I could take to help with my anxiety and insomnia? Very scared about the anti-psychotics making things worse. Also Remeron seemed good - but now I am scared that its MoA is similar to low dose Seroquel (antihistamine action) and could make the visual snow worse. I suggested Amitriptyline to my psychiatrist but he didn't think it would be good - however looking online it seems to be quite effective for insomnia.

Longing for the days when I "only" had tinnitus.

I have no idea if this advice will help but you may want to ask about getting thyroid hormones checked just to rule them out. I saw on a forum where a person had very bad anxiety and visual snow and it was due to a thyroid hormone issue. Maybe there are other hormones you could check as well just to rule them out if nothing else.

 

[Roserosie]

I have no idea if this advice will help but you may want to ask about getting thyroid hormones checked just to rule them out. I saw on a forum where a person had very bad anxiety and visual snow and it was due to a thyroid hormone issue. Maybe there are other hormones you could check as well just to rule them out if nothing else.

Hi Jason - I think you may be onto something. My thyriod is fine - but the psychiatrist wants me to see an endocrinologist as I have galactorrhea - which could be from stress but could also be a sign of some hormone dysregulation.
I have started on Amiltriptyline. 10mg first day then 20mg. Feel like it has made my palinopsia and VS worse. Tinnitus is louder (it was fairly quiet the day leading up to taking it) but it fluctuates so much its hard to know. Still only a few hours sleep. But at least I have been lying in bed drugged out and not having panic attacks and pacing up and down my house. Also was hungry today which was nice. @Bill Bauer - does it take a little while for the sedation to work with Amiltriptyline? My doctor want me to increase the dosage again tonight but because I think it might be making the VS worse I feel like going slow would be best BUT I really crave some actually sleep (as opposed to lying in bed half awake)
Worse sympom at the moment is constant dizzyness - like i am bobbing on the ocean, or slowly spinnig, especially pronounced when I am stttill/ lying down. I feel like my entire sensory apparatus has gone bizerk.

 

[JasonP]

@Roserosie

I have a question for you. Is your pulse lying down much lower than your pulse when standing up? You should be able to check that with a blood pressure monitor. It may not be the case with you but I found out I have dysautonomia which can cause anxiety as my pulse can be a lot higher when standing. Although with me, I can get lightheaded on standing but usually not when laying down. Also, have you looked into Ménière's disease? I hope you feel better asap.

 

[Roserosie]

So I am now on Mirtizipine (Avanza, Remeron) and finally getting some sleep. Hooray! But ever since starting it (I was amiltripyline for 1 week wasn't helping me sleep very much but I did feel calmer at night) my tinnitus has been the loudest it has ever been. By evening now it is like an alarm going off in both ears. Don't know what to do. Now my tinnitus is so loud NOT taking the mirtizipine scares the crap out of me because I can not cope with having to listen to the tinnitus- whereas before I was getting to a stage where I could cope in a quite room with just my tinnitus ( I think it was getting quieter over time and I was starting to habituate a bit).

Any opinions whether it is the Mirtizipine or the coming off the Amiltripyline?

 

[JasonP]

Gosh I wish I was writing some success story here but things are going from bad to much worse for me and I am at my wits' end. Seem to have developed visual snow syndrome (the afterimages and flickering vision and closed eyed visuals are the most disturbing. Saw a neuro-ophthalmologist - nothing wrong with my eyes.

However the most awful symptom at the moment is insomnia - I cannot sleep more that 2hrs a night if I am very lucky. I am also so anxious/agitated that I cant even lie in bed. I have tried - Phenergan (got tolerant after 2 doses and didn't work - scared it actually caused the visual snow) Valium and Temazepam (have taken 10 times- spaced out - but now have crazy tolerance - 10mg of Valium gave me 1 hour of sleep, then woke up with a panic attack.) My psychiatrist prescribed Seroquel - took 12.5mg - didn't work but had crazy hypnagogic hallucinations but no sleep, the tried 25mg the same result but worse (had an insane panic attack and wanted to die) and I think since then my visual snow is worse. I am also doing Feldenkrais, meditation, lots of hypnosis, and just started EMDR and yoga all to get my anxiety under control. I go for a bushwalk everyday.

Does anyone know of any reasonably safe medications I could take to help with my anxiety and insomnia? Very scared about the anti-psychotics making things worse. Also Remeron seemed good - but now I am scared that its MoA is similar to low dose Seroquel (antihistamine action) and could make the visual snow worse. I suggested Amitriptyline to my psychiatrist but he didn't think it would be good - however looking online it seems to be quite effective for insomnia.

Longing for the days when I "only" had tinnitus.

I thought of something else...what is your pulse when lying in bed at night before you want to sleep? I have had the hypnagogic jerks and one time I had hypnagogic hallucinations too very briefly and right now I am thinking it may have something to do with adrenaline levels at night. The two nights I had it bad, I had gone out and done some jogging an hour or two before bedtime and I heard that exercising before bed can cause it. A couple of times I used propranolol which is a beta blocker to help stop it. I'm not saying you should use it, but I am curious if maybe your pulse was high at night due to adrenaline. Also, do you drink caffeinated beverages at night?

 

[Sayeed]

I'm sorry you're dealing with all this. I have visual snow too so I know how it is and how intrusive it feels to have your vision affected

I've struggled with insomnia a bit and at the time Benadryl and Melatonin helped me a lot. I'd still wake up 4 times a night but at least I got some sleep. Honestly the only thing that has helped me is tiring myself out during the day. I wake up super early, make sure to get exercise in and my sleep has improved drastically. Are you tiring yourself out enough during the day?

I was at my worst when I spent all day in bed due to being depressed over tinnitus and visual snow. Not sleeping but just laying around looking at my phone and once I changed that sleeping got easier. I hope you find whatever works for you! Hang in there.

Hi there. Just checking if your Visual Snow Syndrome has gotten any better? I just got tinnitus and now I'm experiencing Visual Snow Syndrome. I wonder if it's my meds or something else. It sucks dealing with both as a long time anxiety sufferer.

 

[Orions Pain]

Hi there. Just checking if your Visual Snow Syndrome has gotten any better? I just got tinnitus and now I'm experiencing Visual Snow Syndrome. I wonder if it's my meds or something else. It sucks dealing with both as a long time anxiety sufferer.

Hello. So unfortunately my visual snow has not improved but after about a year with it, it has gotten easier to deal with, especially in comparison to tinnitus and hyperacusis. My VSS mainly bothers me outside at sundown/at night and during the day it doesn't bother me a lot. If it doesn't progress too much (and it usually doesn't) after a while it should become less bothersome.

For some reason people with tinnitus tend to develop it gradually. I wasn't taking any meds when I developed mine.

 

[Ava Lugo]

I'd usually get up, take a quick hot shower, and turn on a light and a tv show.

You can watch tv just fine?

 

[Orions Pain]

You can watch tv just fine?

With very low volume and captions it's doable for me.