TNF Alpha and Brain Inflammation

Hi All,

Just an update. I am in dire straits with my reactive tinnitus. While I had good relief the first few days of the high dose (60 mg) Prednisone, that has quickly begun to wear off as I’ve continued to taper.

@DebInAustralia & @Uklawyer, while I consider the response to Prednisone a good sign regarding an inflammation issue I am now urging my PCP to prescribe me LDN. I will keep you posted as this is really the best option for me with the PRP treatments I have scheduled coming up as well. He initially prescribed me Topiramate and Nortriptyline that I filled but never took and continue to stare at on my counter day after day as my anxiety mounts but am still holding out.

 

@IntotheBlue03, I am sorry to hear about your downturn. If Prednisone does not do it for you, I am unsure what route others normally take regarding anti-inflammatories.

Do you know why Topiramate was prescribed to your rather than something like Gabapentin or Pregabalin?

I am ambivalent around antidepressants because I have been a long-time user of them for anxiety but, at the same time, I am unsure whether something I took in December 2020 was the reason why my tinnitus tipped over from being slight and easily managed in the evening, into something that prevented me from sleeping and resulted in me no longer being able to work and having to go to a psych ward. I am currently trialling different meds under the care of a psychiatrist, but it is not easy for them to understand fears around aggravating tinnitus. I also take Valium at night and have been trying to taper, but my psychiatrist thinks I need to take between 5 and 10 mg every night (I take c. 3mg at the moment). In my case, antidepressants probably stabilize my mood in general, but hearing it at night and in the morning essentially brings down all the time - they do not work on the tinnitus and direct response in any way if you like.

I cannot comment on your levels of anxiety, but it might be worth seeing a psychiatrist, explaining the background, seeing what they say and prescribe, taking your concerns into account, filling the prescription AND THEN trying LDN first, if possible, to see if it helps If not, you always have the medication to start (including a second opinion from a psychiatrist - in addition to your PCP).

If you have not trodden that psychotropic path yet, it might be worth holding out just a little bit longer if you can. But be aware of your mood in general. Do you have people around you that can provide support also?

Is the tinnitus only reactive? Do you sleep okay?

Best wishes

 

Hi @Uklawyer,

Thank you kindly for reaching out. Full disclosure I am definitely hanging by a thread and a hair away from being committed myself. My tinnitus is extremely reactive and paired with some level of hyperacusis so even my own voice sets it off. I am unable to mask it hardly because of its reactiveness and high frequency (14-15 kHz) and going into public makes it completely beyond my control as I’m at the mercy of the sounds around me. I’m increasingly isolated and at home in low sound and feeling unable to cope which has resulted in me now reaching out to my PCP to prescribe some type of anti-anxiety relief.

I have great support with my mother who is at my side 24/7 but I am barely able to sleep or function. This has definitely turned my life upside down over the past 6 weeks with my job on the line despite having the ability to work from home currently.

Correct me if I am wrong but I assumed my response to the high dose Prednisone over the first few days was a good sign that inflammation was at work and that continuing under a safer option like LDN might be a good long term solution? Only as I was tapering did the Prednisone start to become less effective which I read was common. Still hoping that is the case as the first few days lowered both tinnitus tone and perception for me.

I think my PCP is just not that knowledgeable as he feels the Topamax will be most effective to reduce my anxiety and quickest to deliver relief but I have not come across one single good review on this forum or elsewhere regarding this drug and I am terrified of the side effects. In addition I have Nortriptyline which seems to be safer but from what I understand takes weeks to take effect?

 

Hi @IntotheBlue03, thanks for the clarification. I understand your difficulties as when my tinnitus became intrusive, I could barely sleep, and the thought of having that, alongside the fatigue that comes with ME/CFS drove me into a horrendous tailspin.

But know that (i) you are not alone; and (ii) I believe that there is hope on the horizon. I believe most people that this happens to go through this period of high anxiety and fear of losing control: it is a natural reaction to this perceived threat and is maintained by the inability to resolve that threat in quick time. If you can, try to remind yourself that it is this response to this unknown stimuli that is at work here - but that there is no actual danger - and tell yourself that it will calm down soon.

For what it is worth, please don't feel afraid of the thought of seeking help as an inpatient in a hospital. This is how I felt when I went, but realised that it is simply another establishment where you get support and doctors try to help with psychological aspects of a problem. I felt safer there eventually, than in the outside world - and was given higher doses of benzos before they were tapered right down - and, believe it or not, I actually had lots of success with my tinnitus. I am still trying to figure out the psychological aspects of it.

As for Prednisone and inflammation, I can only assume that your hypothesis around inflammation is correct - but I cannot speak directly to it, since I was not aware of this protocol until after having had the intrusive one for a while, so never tried it myself. Maybe someone like @Stacken77 or others can tell you more about this.

Nortriptyline is a tricyclic antidepressant. As far as I am aware, nearly all antidepressants take a few weeks to kick in with AD effects. I know that Mirtazapine is an atypical antidepressant which will usually help with sleep at lower doses - I took one dose years ago and it knocked me out. It, along with Nortriptyline and Amitrityline are cited on here as the most beneficial for tinnitus, but, as always with this stuff, some have complained of them worsening tinnitus (or even being the cause). It's a minefield and I was shit scared of taking anything else after mine became intrusive.

I would try seeing a psych if you can quickly, as stated above. And take time off your job. Tell them it's a medical emergency - do what you have to do. Now is time for you and nothing else.

Oh, and tell your mum that she is a saint.

Keep the hope.

Best

 

Hi @Uklawyer,

I cannot tell you how much I appreciate your comforting words and advice along with the community I have found here on TinnitusTalk. This is absolutely the most terrifying and difficult issue I have dealt with in my life, and that’s after having been a severe chronic pain sufferer with dozens of spinal injuries for a decade. I think I would be faring better if it wasn’t reactive as that’s taken a whole different toll from isolating me from loved ones as well as things I used to enjoy like music and movies, plus not having the full ability to mask is quite maddening.

As an American I unfortunately don’t have the option of inpatient hospitalization both due to lack of benefits and the cost, and as much as I take your advice to heart I am a contractor with very few labor protections so this has only upped my anxiety as I’ve struggled to continue to work (though I am lucky enough to work from home currently) but am performing horribly. I feel like I am very much living the nightmare those of you around the world envision when it comes to working Americans who get sick with no social safety nets.

Please excuse the politics though and thank you for the information regarding tricyclic antidepressants. I agree that my natural reaction daily is making this worse so while I’m on the fence about antidepressants I am seeking to get prescribed LDN as I feel that’s a safer route and might be more effective with the autoimmune issues I am dealing with and due to my positive response to Prednisone.

I also have a meeting for TRT scheduled and while I feel it won’t be very fruitful I will give it a go.

Is your tinnitus still intrusive at this point?

Couldn’t agree more about the minefield btw - I’ve definitely spent more time googling medications than working up the nerve to take any lol.

 

None of that.

Lyme lit naturopath treated me with TCM largely based on Buhner's protocols.

Stopped everything since my relapse. Only thing I'm taking is Magnesium L-Threonate

Symptoms predominantly heart... lung... joints... fatigue... mood.

 

@DebInAustralia, have you had a look at these programs and the theory behind these conditions - i.e. immune/neurological response to a virus that then does not return to baseline once the virus has effectively left the body/is no longer a threat - i.e. it gets programmed in the limbic system and keeps the body in a hyper vigilant state (sympathetic state of fight and flight), which means that the body cannot rest and repair?

Does any of that resonate with you?

I am not sure whether the person that is doing Vital-Side had Lyme. She did write back to me directly the other day after I enquired whether her program helps people with tinnitus (she said she is seeing more people with tinnitus recently).

If of assistance, I can try to make an introduction if she gets back to me!

 

Not at all - that is what this place is all about I believe. I am with you on this being terrifying. None of us deserve this, but that is the way it is. We have to believe we will get through it. I see that you have been highly active on this board since your situation became worse. I think it's great that you are looking for advice and support in order to try to find something that can ultimately help you with your progression - and I sincerely hope that you find that something. If you are able to, during this difficult period, I would also try to see if there is anything you can do take your mind away from the noise as much as possible: i.e. take breaks from here, slow down, try to do something that you can focus on a little. Can you watch TV (at low volume) or with subtitles?

If you don't mind me asking, what CAN you do if you needed to be in a hospital for a period of time? You would have to be committed/can't go voluntarily? I don't understand the US system and how you could have no safety net whatsoever.

In answer to your question, I see intrusiveness as being anything that has a negative impact on your life - and that certainly applies to me. I am a slightly stranger case in that it is not generally the volume that upsets me as much as the mere presence of the tinnitus. With my comorbidities of long-term anxiety and then ME/CFS, from which I have suffered for 20 or so years, the intrusive tinnitus, essentially, pushed me over the edge of a cliff, with no way to work with lack of sleep, fatigue, anxiety, depression and tinnitus. It is, for me, a lethal cocktail. But I am trying to work on some of these things in tandem, whilst hoping for reduction of noise to a point where I can easily mask and sleep soundly, in order to allow me to be able to resume normal activities.

You have done great to hold on to work up to now. Do what you can. Try to forget about other stuff for a bit though and focus on your well-being. As stated above, try to let yourself wander elsewhere. Deep breathing apps to activate the parasympathetic nervous system; any meditation/relaxation exercises; TV...

Best

 

I think the LDN is a good idea.

I know of 2 people, who have responded significantly to steroids, but experience an increase to baseline after cessation.

Your improvement to steroids is a clue.

My friend also responded to high dose Curcumin (3 g), but not as dramatically.

Samantha is on 1 mg LDN, and her tinnitus has practically been eliminated (cochlea hydrops post IVF attempt).

For you, it could be somatic or brain inflammation from hidden hearing loss.

LDN dosing (0.5mg - 4mg):

http://www.ldnresearchtrust.org

 

Thanks so much @DebInAustralia, just curious but in your opinion do you think that there was an increase in baseline or potentially their perception had changed since being on LDN? I had that impression as I was tapering off Prednisone but now believe it was only my altered perception to the amazing 3 days I had in addition the stress response of dealing with it returning.

I actually booked an appt with LDNDoctor.com on Monday so I don’t need to deal with my PCP anymore hopefully at this point.

 

Hi @Uklawyer,

Forgive me as I’m still learning my way around posting and am unsure of how to individually quote your questions to respond to.

I greatly appreciate your tips and concerns as I know most of us if not all here feel like we are in an utterly bottomless black void. Ironically I use to tell people when you suffer in chronic pain there is no bottom but the grave. I realize I must make some adjustments to my mindset at this point in that regard. In the past 6 weeks I’ve at least taken the steps to let everyone know I am in a major crisis and cannot be around them/assist them in the ways I had to before. This was a huge step as I’ve always been the “go to” person in my family and circle of friends. The isolation and limitations of reactive tinnitus have definitely been the more distressing aspect of this as I don’t feel I have an activity to “wind down” to. I have had momentarily relief from high frequency ACRN tracks and continue to search that kind of thing out. If there are easier resources or audio engineers/folks you can recommend across Tinnitus Talk that would be great, as that’s the next avenue I am looking to go even if it’s to pay for custom high frequency tracks as a form of “Sound Therapy”.

Unfortunately in my situation and for many Americans I’m a breadwinner in my household and to be without a job would also mean being without healthcare. I was very politically active prior to this in the fight for universal healthcare after what I had suffered during my decade long fight with severe chronic pain due to spinal injuries, so this very much feels like PTSD in addition to the stress and shock of reactive tinnitus. I have unfortunately been a contractor for 13 years and the lack of labor protections has meant they can simply eliminate my position when I go out on “leave”. As far as inpatient hospitalization goes most of us fear the debt and potential bankruptcy that goes along with that. As you already know life as an American today is ridiculous and insane and certainly not suited for anyone dealing with severe tinnitus.

In any event I appreciate the space to vent and express all of these fears and concerns. I am sorry to hear that intrusive tinnitus had such a devastating impact on your life.

When you say antidepressants don’t have a direct effect, do you mean regarding your emotional response to tinnitus? While I don’t expect the volume to change I’m hoping a Nortriptyline can better help me cope and calm down.

You’re an absolute wealth of knowledge and compassion and I thank you.

 

Sam's tinnitus is no longer an issue since taking 1 mg LDN daily since her cochlear hydrops experience (may be linked to the progesterone used during her IVF attempt in 2020).

She has since given birth to a beautiful girl, and I recall her telling me that her tinnitus had ramped up during her pregnancy; requiring her to take 2 mg for a while.

It has all settled down since birth, so stays on a maintenance dose of 1 mg.

I think if your tinnitus has fluctuated with the steroids, it is likely that it appeared to worsen during your taper when all it was doing was returning to baseline.

I totally empathise with you. You are not alone. Even for people like myself, who have lived with tinnitus for many years, it can be challenging and anxiety provoking.

My relapse occurred at the end of October 2021. Back to insomnia, panic attacks, severe anxiety, depression, lack of focus... etc.

Things I am doing to help with habituation and relaxation...

-Tinnitus focused meditations (Jennifer Gans runs an online mindfulness tinnitus related course, Glenn Schweitzer has written a book about rewiring tinnitus and offers consults - relies on tinnitus focused meditations and body relaxation meditations to help facilitate habituation).

-Back to Silence technique by @I who love music on here who had trashed his ears, suffered terribly for 40 years, and has completely habituated by using CBT mindfulness technique. Quite remarkable what the brain is capable of.

-A psychologist with severe tinnitus but habituated, has suggested 2 things:

1. Focusing on listening to tinnitus mindfully

2. Thinking and saying positive things through the day when it intrudes, fake it till you make it.

 

Just highlight the relevant section you want to quote and the word "Quote" should come up automatically, allowing you to copy that section only.

It does not surprise that you are the go-to person who has taken others people's problems upon yourself. I think people with this kind of nature are prone to suffer with stress-related conditions. Have you heard of the Karpman Drama Triangle? If not, have a look and see if you recognise yourself somewhere in there. At any rate, you have done well to put people on notice that you need to be more available for yourself at the moment. In your acute phase, I would just do what you can to keep as calm as possible - and try your best not to worry about anything else.

I am a contractor too. I did not take out insurance initially, but I then had a policy put under my own contracting company. I don't know if you can do that in the US. Here in France, the system is very generous. You have your social security which can cover an in-patient stay at a clinic and your insurance which can fully cover the overage for a single room (if it's a good one). These are not 5-star places, with daily therapy from a psychologist, but you will have a psychiatrist that will come to see you 4-5 times a week, talk you you a bit, see how you are getting on and monitor medication. You will also have a weekly session with a therapist and do other activities like art, music therapy, expression, relaxation sessions etc. Anyways, I appreciate your position with American healthcare. It is certainly a blight on the nation's reputation - the concept of the land of freedom and ability to have what you want provided that you work for it implicitly denies any support for those who have disabilities that prevent them from working. It's a horrible shame - as is, in my opinion, the difficulty of passing new laws under the 2-party system. But that's politics.

In terms of effects of antidepressants, I feel that they can definitely help lower the anxiety and help somewhat to get you towards being on an even keel. And if, in doing so, they can get you to a place where you can accept the tinnitus, let go some and be able to function again, albeit with some limitation vis-a-vis the way you were prior to having it (or it being a problem), then they would have done a good job. In general, they don't seem to work directly on the level of tinnitus - they, rather, can help you to feel less anxious about the tinnitus by calming you down somewhat. However, in having this effect, some people may notice that their perceived level of volume of the tinnitus has decreased too. In addition, some people seem to have witnessed an actual reduction in the volume of tinnitus. It is hard to say, but since some hypothesise that tinnitus comes from overactivity of excitatory neurotransmitters like glutamate, it might be possible that playing with the neurotransmitters a bit using antidepressants that work on serotonin, dopamine and norepinephine, amongst others, has some therapeutic effect. For me though, hearing the noise at night or when waking up just depresses me. That's what I mean by ADs having no direct effect on the tinnitus for me. Conversely, valium helps me to sleep and taking it then tapering to 2 mg whilst in hospital seemed to take away the noise for me. It's very strange, and I might have to go back there and do the whole thing again and try to get down to zero or on v low dose for a while to see if it makes a difference. Hope that makes sense. you can read the SSRI thread on here for more info.

Thanks for the compliment - just trying to support. Wishing you well.

 

How does focusing on tinnitus help?

 

Focusing on tinnitus with curiosity (mindfulness) rather than judgement, is thought to help remove fear and anxiety. I don't mean to constantly focus on it though. I suppose it is an attempt to desensitize (habituate to reaction) to tinnitus through repeated exposure.

 

Sorry for the delay.

Haven't heard of any of those...

Having one of those *I can't believe this is happening days...*

I've abandoned EDMR.

I'm starting Baikal Skullcap today... I'll let you know how it goes.

 

I have the Baikal Skullcap.

Going to start it today.

May add in Resveratrol later.

I read Baikal Skullcap is an antihistamine too...

 

This study is now starting next month. With a location close to me. I plan to inquire.

 

Good luck!

 

Please keep us posted. Sounds promising!

 

Heard back already. At this point the site near me is only planning to enroll veterans. They certainly deserve a first shot anyway. Looks like the remaining sites aren't at VA hospitals so people should apply!

 

I pray everyone is doing better in this thread.

 

This trial is still recruiting for blast-induced tinnitus and an audiogram is included.

TNF-α Treatment of Blast-Induced Tinnitus

May be worth a bump for new members. Multiple locations in America available.

Completes September 2024.

 

Give me Etanercept or give me death.

 

I took Enbrel (Etanercept) for 10 years and first developed tinnitus (noise induced) while on it. I came off Enbrel in 2018 due to being in full remission for my rheumatoid related condition but didn't notice any difference to my tinnitus (it was quite mild at the time).

I've been tempted to see what might happen if I started taking it again now that my tinnitus is an order of magnitude worse, but I wouldn't wish my previous condition on anyone either so I'm glad to be off the medication - it carries a black box warning for a number of serious risks.

 

I may be able to be put on a TNF-a inhibitor since my arthritis came out of remission recently. Not Enbrel but Cimzia. My other option may be Kevzara, an IL-6 inhibitor. My third option is doing nothing for now because it seems to be settling down.

Anyone have opinions on whether I should be gunning for the TNF-a inhibitor? For some background, I basically had stable tinnitus for almost 7 years until I took Naproxen for 5 days in mid January for the arthritis. Now the tinnitus is 10x worse but the main problem is pain hyperacusis which has developed over the last 3 weeks (prior to that I had gradually worsening loudness hyperacusis).

Not sure if the TNF-a hypothesis would apply to my situation since the trigger was an ototoxic drug and not noise.

 

Hi @yeezysqueezy -- Sorry to hear you're dealing with arthric pain (on top of tinnitus no less). In case you're interested, this link will take you to quite an extraordinary article on how boron can often be extremely effective in reducing or eliminating arthritic pain.

 

@Lane, wow, thank you for this - fascinating! I think I will give it a try.

Also sorry to hear your ear troubles were also triggered by a medication I hope you're doing a bit better now.