Hyperacusis and Myelin Antibodies

In the sake of trying to identify commonalities between pain hyperacusis sufferers, I thought I’d share a finding from a recent autoimmune lab that I had done. It turns out that I have “myelin antibodies” which are most often associated with MS. Thankfully, I don’t have any other MS symptoms, but it’s still disheartening news none the less. The antibodies could also be associated with other inflammatory demyelinating diseases of the central nervous system which I suppose hyperacusis could be all on its own.

I’m already working with a nutritionist and already eating a very strict anti inflammatory/AIP diet without any improvement. For some reason that is still unknown, supplements like B vitamins, fish oil and Curcumin only make me worse so I’m in kind of a hard spot.

I’m tempted to pass these findings on to my medical doctor (the test was run by the nutritionist), but I’ve lost so much faith in medical doctors recently that I don’t know what good it would do.

Has anyone else had tests like this done? It would be interesting to know if anyone else with pain hyperacusis had these myelin antibodies, too. Maybe it could help explain why some of us are more sustainable to this hell than other people...

 

I have felt that for a portion of tinnitus and hyperacusis sufferers the problem may be related to autoimmune disease. I don’t want to oversimplify things but I have a theory that I’ve developed after seeing family and friends with different autoimmune diseases:

I believe that most AED are caused by trauma to the system (likely CNS or ANS). This trauma can be physical, mental, emotional, viral, etc., basically a stress of sorts. I had this theory long before getting tinnitus and for quite a few years now but I think the theory is becoming more and more accepted in the medical community. Many of the people I know with Chron’s, RA or MS have been through a traumatic event or had their AED triggered after a viral sickness so maybe this is happening with many tinnitus/hyperacusis sufferers; the trauma sets off an AE reaction of the peripheral auditory system.

There is likely a reason why some people develop hyperacusis (or even tinnitus at all) and that factor may be a genetic predisposition to AED or ear damage. It’s possible that for all AEDs that there is an underlying genetic marker that makes certain people susceptible.

The bad news is AED is a complicated disease and difficult to treat, especially when it pertains to the nerves. The good news is we have made significant advancements in treating these diseases not just from a symptomatology perspective but also from the root cause of the illness. 15 years ago, MS was a death sentence, today most MS patients can live full lives with little loss of life expectancy and a very high QoL, if treated early.

I am of the opinion that we can regenerate our CNS and PNS albeit very slowly. I think we will have medical advancements in the next decade or two that will help that process along and help us regenerate faster and better. In the meantime, bio-electrical and neuroprostethics like cochlear implants and vagus nerve stimulators will bridge the gap to improve QoL for patients as those technologies get better as well.

@Marin, have you considered your antibodies might not indicate MS specifically but might be related to GBS as a current or past infection? I believe I read once that GBS can even be very mild and can go unnoticed yet still produce antibodies though I believe the appropriate diagnosis comes from measuring the protein from a spinal tap. Have you gotten an mRNA vaccine by chance?

 

I would get a consult with a rheumatologist and see what they think. If the antibodies are significant, they may want to start you on an immunosuppressive and they could also do further testing to rule it in/out as a co-factor.

 

Thank you! I’ve been on a doctor merry go round, and just wasn’t sure who to even start with. I’ll give that a shot.

 

Thank you, @Lukee. I had not considered GBS, nor have I been tested for it. I’ll bring this up with the Rheumatologist, too. I sure wish the doctors would think of this stuff on their own instead of us having to be our own doctors, sigh.

I agree with everything you said about how an illness or traumatic event could bring on an autoimmune disease. Before my acoustic trauma, I didn’t have any of these problems. Now there seems to be a snowball effect of things getting worse with more and more strange symptoms.

 

I've never had a myelin antibody screen (and probably don't have it), but Sjogren's can also mimic MS as a demyelinating disease. Have you been tested for ANA, SSA, SSB, RF? Do you have any other inflammatory markers like ESR,CRP or abnormal C3 and C4 proteins?

MS can be a cause of hyperacusis. It usually has an early presentation of vision problems, bladder problems, and weakness, but then again, I'm not really in a position to rule out abnormal presentations...

 

Thanks, @Zugzug. I do believe I’ve had those tests. Everything was normal/negative except my C3 was a little low, Cardiolipin IGM was a little high, and I did test positive for ANA with a speckled pattern.

@Zugzug, @FGG, @Lukee, I sincerely appreciate all of your feedback. It’s so frustrating when doctors do the bare minimum testing, and then they shrug their shoulders when they can’t find an obvious diagnosis. Your suggestions help me feel like I’m not crazy for thinking something else could be going on or at least contributing to the severely of my condition.

I did have a good laugh when I broke down and finally consulted a psychiatrist after the neurotologist kept insisting I needed psychiatric help. The psychiatrist told me my hyperacusis was a physical problem and not a psychological one. DUH! FML...

 

I saw a psychiatrist early on, too (at my ex husband's insistence, not another doctor's--they didn't push that since I had abnormal otology results).

I was pleasantly surprised when she told me that I had some PTSD symptoms but (and she directly said this) it sounded like one of my biggest problems was that my ex was dismissing my physical symptoms as psychological and that wasn't helping my stress levels. I was kind of surprised. I assumed they would err on the side of giving you a mental health diagnosis.

It's nice to have the psychiatrist on your side though, I do think it will help in not having your otologist dismiss you.

 

What was your ANA score? People with MS don't usually have positive ANA. Also, 1:40 and 1:80 are so low that many doctors don't even count it.

I tested positive for Sjogren's from a biopsy with consistently negative ANA, SSA, and RF. My ANA was tested many times over 7 years and only scored 1:80 once. Weird stuff can happen.

I actually had a similar experience with a psychiatrist. We sat and talked (whispering) and he basically told me I was seriously depressed from a major medical problem lol. Surprised me as well.

 

@FGG, thanks for sharing your story. I’m happy that you had a positive experience with the psychiatrist. I’m also so sorry that you didn’t get the support from your ex that you deserved.

The PTSD one can develop from serious ear problems is unbelievable. I think that is probably true for any life limiting injury. While the SGB I had didn’t help much with the pain from sound, I do think it temporarily helped with the PTSD that I’ve developed from this and my fight/flight reaction was dampened which was a relief while it lasted.

Agreed, hopefully having consulted with the psychiatrist will keep the neurotologist from continuing to use that as his fallback suggestion. At the very least, it was nice to get that validation from the psychologist that I’m not overreacting.

 

Huh, well that’s interesting that you tested negative for all those years and that a skin biopsy was needed to get a firm diagnosis. My ANA was 1:32 and speckled. My nutritionist said my low RBC counts indicate that I’ve probably had some type of autoimmune issue for years. Of course the medical doctors have all been dismissive of those results because they aren’t low enough to be dying.

That is a relief to hear that most people with MS don’t have positive ANA. Thanks!

Sounds like your experience with the psychologist was just like mine. He asked if I was depressed before this and I told him absolutely not. I had a wonderful life before this, and now it’s in complete ruins. Not to mention that all of the usual coping mechanisms for depression (music, going out in nature, visiting with friends or family) are completely off the table. What’s not to be depressed about?!

I saw in another post that you were trying LDN. I sincerely hope it helps you

 

Hmm. Maybe I will look into SGB myself. My fight or flight in the last few months has been insane. I literally wake up from a dead sleep with a racing heart every single morning now. I had that early on and it lasted 8 or 9 months but with the new noxacusis symptoms, it's back in full force and just makes everything worse.

You don't feel it had a lasting effect? Do you think it was still worth it?

 

I'm also eating an AIP diet. How long have you eaten AIP? I had the same antibody as positive, the doctor it was a clotting factor. Everything else was normal or negative for me.

twa

 

Hey @Marin, you didn’t answer about vaccine. Did you happen to have a Pfizer or Moderna vaccine? The reason why I ask is there is a significant number of reports of increased ANA from the mRNA vaccines.

 

Have you tried all the parasympathetic protocols? I don’t want to sound stupid, you obviously know what you are talking about but I found that a few things really helped calm my ANS. Breathing exercises (ironically), fish oil, cold water on face many times per day, light stretching of my shoulders and neck. I used to wake up in the middle of the night heart racing and sometimes in the morning. Very rarely happens now even though I would argue I’m more consciously anxious. My fight or flight seems controlled and my heart rate and HRV looks like it’s optimal.

 

I take Fish Oil, and already stretch. I can do breathing exercises as long as breath holding isn't involved as I'm trying to increase middle ear oxygenation.

Weirdly, it's only when I wake up. Last it went away on its own. I just think I'm prone to this everytime I get a new "hell" to deal with.

 

Yes, definitely no breath holding, I learned this the hard way. The breathing is easy, 4 counts in, 8-10 counts out. Do this for 5 minutes at a time or as many times throughout the day as you’d like. I noticed after actively doing it for a week all the symptoms of sympathetic response went away.

By the way, if blood flow to the middle ear is so important, why is inversion a bad idea? What about Vasobral? Do you think it could help us?

 

Blood flow good, pressure bad is probably the best way to explain it.

The alpha blocking properties of Vasobral possibly could help but the central serotonin and dopamine effects can worsen tinnitus so I personally wouldn't take it.

The absolute best thing you can take for your middle ear perfusion is probably Magnesium. Helps relax muscles as well. I like liquid oral Magnesium chloride (not topical).

 

Have you tried Vinpocetine? I guess it would fare similar to Vasobral in that sense since it seems to hit serotonin and dopamine receptors:

“Vinpocetine is a selective inhibitor of phosphodiesterase type 1 (PDE1) has potential neurological effects through inhibition of voltage gated sodium channel and reduction of neuronal calcium influx. VPN have noteworthy antioxidant, anti-inflammatory and anti-apoptotic effects with inhibitory effect on glial and astrocyte cells during and following ischemic stroke (IS). VPN is effective as an adjuvant therapy in the management of epilepsy; it reduces seizure frequency by 50% in a dose of 2 mg/kg/day. VPN improves psychomotor performances through modulation of brain monoamine pathway mainly on dopamine and serotonin, which play an integral role in attenuation of depressive symptoms. VPN recover cognitive functions and spatial memory through inhibition of hippocampal and cortical PDE-1with augmentation of cAMP/cGMP ratio, enhancement of cholinergic neurotransmission and inhibition of neuronal inflammatory mediators. Therefore, VPN is an effective agent in the management of ischemic stroke and plays an integral role in the prevention and attenuation of post-stroke epilepsy, depression and cognitive deficit through direct cAMP/cGMP-dependent pathway or indirectly through anti-inflammatory and anti-oxidant effects.”​

It looks promising otherwise. I would have to say that I have taken it for a few days but haven’t noticed any discernible difference and if anything it’s possibly spiking my tinnitus. I’m going to run it a little longer and see if any positive effects otherwise I’m going to cut it out.

 

I get that waking up with my heart racing, too, and I hate it! I think the calming effect of the block only lasted about two weeks. I’m actually getting another today hoping the calming effect will last longer this time. They are supposed to build up and last longer with each one.

I’m also getting it again because I have horrendous neuropathic itching in my ears and face, and I think the block helped with that even though it didn’t really help with pain from sound.

 

I’ve been on a strict AIP diet for 2 months now. I’m actually trying out carnivore this week because sometimes I’d feel even worse after a green smoothie with coconut milk or big serving of veggies. I LOVE fruit and veggies, but if cutting them out provides any relief that’s a sacrifice I can live with. I’m also intermittent fasting.

I’ve seen that you’ve felt improvement on the AIP diet and that’s wonderful! I certainly wish I’d been more strict about my diet earlier on.

 

Sorry I missed that! I don’t think I’ve had one, but I’m not sure how I’d know. I haven’t had the COVID-19 vaccine which is the only mRNA vaccine that I’ve heard about. I did get flu shots the last couple of winters before my ear issues. Is it possible any of those were mRNA?

That is interesting about the increased risk of ANA from mRNA vaccines. Good to know!

 

Ya the only mRNA vaccines right now are for COVID-19. So if you haven’t received one then it wouldn’t be related. Was just curious.

 

Ok, good to know, thanks! Since my ears get pissed off by simple vitamins there’s no way I’m getting any vaccines anytime soon.

 

How is the Vinpocetine working out? I just recently saw that it is also a sodium channel blocker which could help with pain. Can you remind me, do you have any pain hyperacusis and if so, have you noticed a difference since starting the supplement?

I did see the recent thread about Vinpocetine and improving hearing loss which was interesting.

 

Hey @Marin.

I did have some hyperacusis over the last couple months but it was monstrously aggravated by certain frequencies rather than loudness. It has gotten a lot better over the last 2 weeks. My ears don’t “resonate” much anymore when my kids speak to me and most sounds don’t bother me much.

With that being said, I don’t think Vinpocetine helped with that as I only took it for 3 days.

What might’ve helped was the abundance of Magnesium and MSM. Those were basically the only things I have taken for the last two weeks.

 

I’m happy to hear your hyperacusis is doing better! That’s also interesting that MSM could be helping as I’ve looked into that before. Would you mind sharing how much MSM you’re taking?

UGH, I swear I’m the only person on the planet who reacts so badly to Magnesium no matter what form it is (liquid, transdermal spray, etc). I get dizzy, low blood pressure, headaches, and it even makes my exploding headache symptoms worse. So freaking weird.

 

I have head pressure, ear pressure, headaches and ear aches along with just general uneasiness in my ears. Don’t feel bad about it.

I’m taking about a teaspoon daily divided into two doses. I think it’s a total of about 5 grams a day.