I see many people discussing the blood disorder aspect of Pernicious Anaemia but as yet have not seen many people who talk about the other problems it can cause!
I have had, since being diagnosed with PA, terrible tinnatus. At times I can imagine someone wanting to exit the planet because it can really get you down. At the same time that developed I also suffered a dramatic loss of hearing (60%) which is extremely dibilitating. For those who don't suffer this, may I offer you something to consider-- It is night time and you are just putting your head down on the pillow; the property is very quiet and likewise it's quiet outside, so you could possibly describe that as silient, but with tinnatus there is noise (described as ringing but I prefer to use the sound of a noisy sea shell). That noise is so loud that you find it hard to believe you will sleep at all. That noise is apparent every day; your birthday; christmas day; every darn day and it does not go away.
What can you do about that situation. For me there was 2 choices I had which was from about 12 years ago now, which was slash my wrists or live with it. I chose the latter.
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Akidma
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I don't know if tinnitus was the name of what i had but every night was like trying to sleep with a mini mri scan going of in my head, banging, whirring, clicking, buzzing, pulsing. It happened alongside restless legs and whole body buzzing. Thankfully Gabapentin seems to reduce it so i can only guess it is to do with excess brain activity as the Gabapentin works to reduce that as it is an anti epilectic drug. You chose the right path and turning all the negatives into positives is hard when you are unable to sleep. Restful music as Jillymo said helped me as well as trying to do some tai chi moves which calmed me down in the wee small hours.
Tis said, 'where there's life, . . . there's 'dope' ?!' ( - or something like that?!).
You may like to explore the known connection btwn insulin ( - esp. HI, hyperinsulinemia) . . . & tinnitus.
One detailed, easy to follow intro is the ytbe vid 'The Bittersweet Truth' by Dr P Jamnadas. Does reducing any HI, ... easily done as the vid explains, reduce the tinnitus ??! And then, the views of the two Drs mentioned therein: the late Dr Kraft, . . . & the very much alive Dr Fung.
ONE 'quick start' point wld be:
a) to get yr fasting insulin & fasting blood glucose measured ( - likely to require private testing as the NHS won't like testing the insulin!), ... &
b) put the figs from the above into the 'HOMA-IR' calculator ( - easily found with a 🔍 online).
A HOMA-IR value requires careful interpretation, but in the metabolically healthy ( - so, those N⛔ with 'HI') it may be abt 1.5. A value of >2 is likely to indicate reducible HI, in many ( - if not all) cases !
S🍥, HI - ONE thing to consider b4 any . . . more drastic, wholly irreversible measure, . . . one might suggest! 😊 New avenues to explore too . . . towards making our remaining days here more comfortable !
Cognitive thought therapy worked for me when I started to have tinnitus following ear surgery in 2000, Amazing. After 3 weeks I suddenly realised I hadn't noticed it for a while and from there could ignore it. They retrain your brain ! My Tinnitus was so loud, I was like you Akidma. I have suffered from PA for 10 years, this site and all the wonderful people on it have saved me ,given me so much information, thank you all
. . . plsed to know a 'cbt'* helped ease yr tinnitus ( - I'd not heard that before ! Interesting !) . . . but you've replied to my reply, rather than to Akidma's original post ( - as I'm sure you intended to; not to worry, . . . as me mention Akidma in this reply will 'alert' him, ... I think ! 😊).
* - do know there are a bunch of closely related 'cbts' . . . & sometimes not even the 'therapists/practitioners' are too aware of that. Clearly yr therapist knew enough of one for it to be taught effectively to you ! 😊
This is a fairly new symptom for me. My tinnitus sounds more like a distant car horn which affects either, or both ears. It’s constantly in the background and nights are the worst, I go to bed with it, wake in the middle of the night with it and then it’s back when I get up in the morning. I can’t remember what a full, restful nights sleep looks like. I know my hearing has reduced as I am forever asking people to repeat what they’ve said and for the tv to be turned up. I was unable to see my GP and was instead seen by a “health practitioner “ (physio? nursing aid?), who prescribed a steroid nasal spray. Needless to say it had no affect whatsoever. I feel your pain and admire your tenacity. My overriding feeling is a sense of being totally bemused by the whole PA situation - diagnosis, symptoms and treatment.
Try to relax more when you go to bed (I know its easier said than done) I find trying to meditate with a singing bowl helps to take the edge off, or if thats not your cup of tea some music very low in the background can help as Jilymo suggested other than that ask to see an audiologist who should be able to help, hope you get some relief soon I have lived with all sorts of noise in my head for 30 years and yes its very hard to get used to good luck👍
I have had it when I did not have the PA diagnosis.
After3 years injecting each day, the tinnitus stopped. It comes back when I forget to inject, the terrible noise in my ears start again. Mostly after 2 injections, 2 days later the sounds stop.
I have had it for over 10 years now so doubt that it will ever stop. Sometimes for no apparent reason it does intensify considerable, so I refer to it as TT (Terrible Tinnatus) during those times.
My Brother suffers from it and he has had his dire moments, and I know he went for acupuncture for quite some time. It didn't help though, so I doubt there is a real cure.
I have read that vagal nerve stimulation can help with tinnitus. This can be done by meditating in those sorts of things or you can also use a tens unit to apply a small electric current to the regular branch of the vagus nerve. It innervates the really inside part of your outer ear and your tragus, which is the little flap between your cheek and ear canal. Stimulating the vagus nerve strengthens your parasympathetic nervous system tone. It gets you out of that fight or flight and into the rest and digest and repair mode. It’s been shown to decrease inflammation and increase Nuro plasticity. I think that’s how it improves tinnitus. It helps your body heal. I think I read if you identify what tone you’re hearing and listen to other tones while you’re doing the vagal nerve stimulation, it works best. This website can help you with that. tinnitracks.com/en. Here is a video of an OT describing how to do vagal nerve stimulation with a $40 tens unit. youtu.be/Rf9X9OJNbsE
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