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Loss of smell

Discussion in 'Neurological/Neuro-sensory' started by Mariah, Jun 10, 2016.

  1. Mariah

    Mariah Senior Member

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    I have experienced gradual loss of smell over the years as my illness has gotten worse and worse (on my eight year now). I couldn`t find anything about this in any symptom list, and was wondering if anybody else have experienced this? I actually found descriptions of it in some symptom lists for MS, and there it was ascribed to nerve problems. This seems like the more likely cause of it to be, that`s why I`m putting it under the neuro-sensory category.
     
  2. ukxmrv

    ukxmrv Senior Member

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    I had a sudden loss of sense of smell and never found out why. In a way it was a huge relief as I was very sensitive to smells before then. Took about a year to come back fully.

    In my case I get sinus infections and bad hayfever so wondered if was related. The year my sense of smell went I was no worse than usual.

    Will watch this thread and hopefully someone will know more.
     
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  3. Maria5005

    Maria5005

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    My sense of smell has been flickering in and out for years now. Sometimes over sensitive, sometimes gone completely. Sometimes I smell things that aren't there. Sometimes skunks smell good.

    I have no idea why. I haven't been able to link it to any particular thing.
     
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  4. Kati

    Kati Patient in training

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    Hi @Mariah this, in my own books, would be an excellent indication to have a brain scan.
     
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  5. Webdog

    Webdog Senior Member

    I nearly completely lost my sense of smell about 2 years ago. It's gradually come back to about 30% of normal.

    My MRI last month does not indicate MS. None of my doctors seem to have any explanation for my loss of sense of smell.

    ME/CFS affects all my senses to some degree.
     
    Mariah likes this.
  6. Hip

    Hip Senior Member

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    I almost completely lost my sense of smell after catching the suspected coxsackievirus B infection that also triggered my ME/CFS. The loss of smell was variable: on some weeks my sense of smell would return slightly, but then the next week it would more or less disappear again.

    After 2 or 3 years, my olfactory capabilities slowly improved, but even 10 years later have still not returned to their original form, so my sense of smell is still a bit weak.

    If you want to try an effective treatment for anosmia (the medical name for loss of smell), the over the counter drug theophylline 250 to 500 mg for 4 to 6 months is often effective. Ref: 1

    I tried theophylline on a short term basis (a week or two), and it did noticeably bring back my sense of smell; but as soon as I discontinued, I would lose my olfactory sense again. However, I did not take theophylline on a longer term basis of several months; had I done so, it may have more permanently fixed my anosmia.


    Theophylline increases vasoconstriction, so it can be useful for POTS as well (but I would guess it's better for high flow POTS, where there is too much vasodilation in the limbs, rather than low flow POTS, where there is too much vasoconstriction in the limbs — I have the latter).
     
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  7. caledonia

    caledonia

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    Check for zinc deficiency. White spots on the fingernails are another sign, as are frequent infections like cold and flu.

    Some medications deplete zinc - ACE inhibitors, thiazide diuretics, and acid-reducing drugs like Prilosec and Pepcid.

    Certain diets, such as vegetarian/vegan diets and high-grain diets, are low in bioavailable zinc and high in phytic acids, which impair zinc absorption.
     
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  8. Mariah

    Mariah Senior Member

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    Good to know I'm not the only one. Unfortunately I seem to have a progressive version of ME, and when I have gotten a symptom it stays and get worse over time. It does not come and go. It's like you say @Webdog , the ME affects all of my senses to some degree. Would be great to know exactly what causes it! Lost much of the feeling in my skin as well. Often, that worsens together with the smell. It's not completely gone, but as you say maybe 30% there.

    @Kati I did have a brain scan about 6 months ago because of the loss of feeling in my skin actually. Nothing came up. But I agree it would warrant a brain scan if I hadn't had one.

    @Hip Unfortunately this seems to be a prescription drug in my country. But thankful if anybody knows if it's possible to get it online. Seems interesting! I'm convinced it has something to do with the blood flow, either in the nose or in the brain.

    @caledonia Thanks! I'll try some zinc supplements. Couldn't hurt if it doesn't help.
     
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  9. Hip

    Hip Senior Member

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    These two online pharmacies sell theophylline:

    https://www.inhousepharmacy.vu/p-1093-nuelin-sr250-theophylline.aspx
    http://www.alldaychemist.com/catalogsearch/result/?q=theophylline

    In the UK theophylline is an OTC drug, though the pharmacist told me you want to be careful to stay within the normal dose range. There is also a more bioavailable form of called aminophylline:

    http://www.unitedpharmacies.com/Aminophylline-Aminophylline.html
    http://www.pharmacygeoff.md/product.php?productid=2415
     
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  10. Richard7

    Richard7 Senior Member

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    This was an early symptom for me. Long before I had been diagnosed, when the GP I was seeing thought I just needed a month or so off work, I went to stay with my mum and was having real trouble trying to make tea that tasted like tea.

    I first hypothesised that mum's tea was stale and went out and bought dilmah pot bags (large tea bags for pots) and was still not making something that tasted like tea when I was using two bags per cup.

    I then tried to make a curry and found that I could not smell powdered cloves with my nose in the jar, or the crushed garlic or anything and worked out that it was not the tea but me: I was smelling and tasting nothing.

    I have found that it has returned over time but it varies like my vision or I don't know what to call it but my sense of my own body. As of last November I can just dimly sense that I have fingers. If I do not move them I just have a a sense of something being there, if I move them I can feel the thumb, pointer and pinky and that there is something else there. But it is all still really faint.

    Back in November, when this sensation came back I had forgotten it was possible.

    When I had anxiety (and major POTS) issues the previous summer, around the time I joined the forum, I was doing bodyscan meditations as a kind of imaginative mental exercise and was completely unaware that most people could really feel their toes.
     
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  11. Mary

    Mary Senior Member

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    As @caledonia pointed out, loss of sense of smell is a very common symptom of zinc defiency, though of course there can be other causes.

    Re the skin numbness: I'm wondering if B12 deficiency is involved. I think it's worth looking into, if you haven't already. I know B12 deficiency can cause numbness and tingling and other neurological symptoms, my sister, a former vegetarian, had numbness and tingling on various parts of her body which went away with B12.
     
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  12. Hip

    Hip Senior Member

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    There are quite a few causes of anosmia (loss of smell), but I think the two causes of anosmia in ME/CFS patients will likely be:

    Viral upper respiratory infections. This leads to viral damage to the olfactory receptors and the surrounding cells.

    Nasal-sinus diseases, such as chronic bacterial or fungal sinus infections, or allergies. Inflammation and swelling of the nasal tissues may damage or impede the function of the olfactory receptors.


    For viral upper respiratory infection-triggered anosmia, this article is interesting. An excerpt:
     
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  13. Mariah

    Mariah Senior Member

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    @Mary I already take b12 shots, so this is not the cause in my case. But definitely worth checking out if you haven't.

    @Hip Thanks for the links to the pharmacies! I don't think I agree with you about the two likely causes for anosmia in ME patients though. I think a more likely one for permanent loss of smell is nerve problems, either inflammation/damage to the olfactory nerve, inflammation in the brain itself or damage in the blood supply to these parts of the body. I know loss of smell is a symptom for some with MS, and there it's got to do with inflammation of the nerves.
     
  14. Hip

    Hip Senior Member

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    It does mention nerve damage in the article listing the causes of anosmia, but only in the context of a physical head trauma.

    It does not mention nerve damage in the context of viral infection or sinusitis (which are very common in ME/CFS), but says that in these cases, it is damage or disruption to the olfactory receptors and surrounding cells that cause the anosmia.
     
  15. Hip

    Hip Senior Member

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    Incidentally, for the theophylline treatment of loss of smell, this paper says:


    And interestingly, this study found that intranasal theophylline treatment of hyposmia (reduced ability to sense smells) was more effective, and took effect much more rapidly, than oral theophylline.

    For the intranasal theophylline, they used a dose of 20 mcg of theophylline each day in each nostril (although in fact in the study they used 20 mcg of theophylline methylpropyl paraben for intranasal application).
     
    Last edited: Jun 13, 2016
  16. Mariah

    Mariah Senior Member

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    @Hip I have symptoms that prevents me from reading longer passages of text, so I am thankful for the excerpts! Interesting. I haven't had many infections since I got ME, not even once a year, and have had two MRIs to scan for sinusitis, and don't have that either. I do have some non-allergic rhinitis problems with dripping nose and an overproduction of mucus. However, I doubt this is the whole explanation. Something is wrong/damaged/inflammed in the nerves I think. It did get worse one time when I had an infection, which as said is extremely rare for me. But all the other times it has progressed it has not been in connection with any infection.

    Would really love to try the theophylline. Unfortunately it does not look like they will ship to my country, and I can't find it anywhere else either. :-/
     
  17. Mariah

    Mariah Senior Member

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  18. Hip

    Hip Senior Member

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    You can try goldpharma.com, they also stock theophylline.
     
  19. Mariah

    Mariah Senior Member

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    None of them will send to my country, I think because it`s a prescription drug here.
     
  20. Mariah

    Mariah Senior Member

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    Think this is related to the chronic neuropathy that I am experiencing throughout my body, with several parts of the skin of the body being numb or partially numb. Noticed that the skin inside my nose is numb as well, so I think that must be the explanation. Weird and also a little scary I think.
     

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