I have been terrible at posting lately (an understatement) but as I passed a somewhat dubious milestone in October of this year I thought it would be a great way to announce it!
It was 2 years ago, October 5th 2005 to be precise, that after years of terrible
allergies, sinus congestion and sinus infections, I lost my sense of smell and taste. My wife and I had gone to New York for a vacation and it was there that I noticed my sense of smell had disappeared. Some of the best restaurants in the world and I can't taste the food?? At least we made it through the better part of the vacation before it happened.
Well, as past readers of my Anosmia blog have read, I had subsequent nasal polyp surgery which didn't help, I'm currently in a maintenance phase of allergy shots which haven't helped (although they have done wonders for my allergies), I tried abstaining from all alcohol and cigars, I've learned to actually love nasal irrigation, have been on a steady regimine of Nasonex, Flonase, Veramyst or some other sinus spray and yet, I still cannot smell anything nor taste anything.
A dose of prednisone does bring back my sense of smell and sense of taste of course that goes along with it, but as we know, you can't live on prednisone. So the doctors (primarily my allergist) feel that there IS olfaction. It's not like a virus killed off my olfactery nerve. But why I can't smell after all this time is a mystery.
I can say that my allergies and sinus congestion has all but disappeared thanks to the allergy shots and nasal irrigation I do and I'm thankful for that at least but
I truly feel for anyone who has just developed this condition and I always try to talk with anyone who wishes to discuss it. I've learned to live with it yet still hold out hope that one day I will be able to smell.
13 comments:
Happy New Year -
I just surfed in here from wikipedia. I just got a CT scan today and had a renewed interest in any updates about our condition. I've read a few posts. I think I'm in about the same shape as everyone else. Occasional suprise smell 1-2 times a month. Presnesone for xmas so I can smell trees candles & kids. Anyway nice to know there are others out there. Thanks for posting.
I am wondering if any of you are still looking at this website- I cannot smell/barley taste for 3 months! You are right, prednisone works but 1 week later I backslide.
Is surgery going to help? Has anyone tried acupuncture?
Joan
I have had the polyps removed but still no smell. Taste is okay, I guess. I use prednisone for special occasions. Xmas, Thanksgiving, a trip to an exotic locale. I don't seem to have any side effects and I sure look forward to my days of wine,women, and prednisone. I take 5 or 10 mg over a period of about 2 weeks and then go into hibernation til the next time. Works for me!
Do you think there is any way ear candles would help ? Could there be a link ? The end portion of the tubes lead into the sinus area. Its just a thought, I'm going to try it. My mother gave me apple pie right out of the oven ! Well the texture was nice. Im not congested so what is the deal !! I'll let you know if it helps. K.K.
I have had a loss of smell for the past 3 years after a lifetime of allergies and runny noses. I think I have found a solution and am posting this that it might help others.
My MD daughter suggested a prednisone dose pack which was a miracle. Smell and taste returned within a few days. This made me realized there was no nerve damage in my smell centers. The results stopped a few days after the last pill.
I exercise on a regular basis and found that at certain times after stenuous exercise, some of my smell would return for 30-60 minutes.
A friend suggested nasal irrigation (neti=pot) with saline which did not seem to help.
Here is what is helping me. Its a combination of all three.
*** Initially I took prednisone for a week to open everything up. This I feel allowed the saline to reach the inflammed areas previously closed off. I do the nasal irrigation after an hour plus bicycle ride while the upper sinus' are still open. The key I feel is instead of pouring the solution in one nostril and letting it run out the other, I inhale through my nose and get the solution up where it is needed. It takes some practice, but if your head is pointed down (hair towards the ground) you should hear a gurgling sound from your nose. Much of the solution ends up in your mouth so must eliminate and "inhale" some more. I use 2 cups of water and one teaspoon of sea salt. I heat it in the microwave for a minute.
Hope this helps someone else.
I have had a loss of smell for the past 3 years after a lifetime of allergies and runny noses. I think I have found a solution and am posting this that it might help others.
My MD daughter suggested a prednisone dose pack which was a miracle. Smell and taste returned within a few days. This made me realized there was no nerve damage in my smell centers. The results stopped a few days after the last pill.
I exercise on a regular basis and found that at certain times after stenuous exercise, some of my smell would return for 30-60 minutes.
A friend suggested nasal irrigation (neti=pot) with saline which did not seem to help.
Here is what is helping me. Its a combination of all three.
*** Initially I took prednisone for a week to open everything up. This I feel allowed the saline to reach the inflammed areas previously closed off. I do the nasal irrigation after an hour plus bicycle ride while the upper sinus' are still open. The key I feel is instead of pouring the solution in one nostril and letting it run out the other, I inhale through my nose and get the solution up where it is needed. It takes some practice, but if your head is pointed down (hair towards the ground) you should hear a gurgling sound from your nose. Much of the solution ends up in your mouth so must eliminate and "inhale" some more. I use 2 cups of water and one teaspoon of sea salt. I heat it in the microwave for a minute.
Hope this helps someone else.
Its true that you can't live on Prednisone. However, if prednisone returns your sense of smell, then there probably is something much safer you can take regularly: ALPHA LIPOIC ACID and L-Carnosine. I know this first hand. When I stop taking them - my olfaction ability goes down. Alpha Lipoic acid has been proven to increase olfaction in a recent University of Dresden Study. Not only that, it is an amazing antioxidant and safe for daily use. 400 to 600mg per day should be used. (The study used 600, I use 400). L-Carnosine is also a smell booster and is abundant naturally in the normal olfactory bulb. Both are safe and available at any vitamin store. You can use these safely on a daily basis. Just don't over do it, because the studies show that mega doses of these substances are not needed to return your sense of smell.
Its true that you can't live on Prednisone. However, if prednisone returns your sense of smell, then there probably is something much safer you can take regularly: ALPHA LIPOIC ACID and L-Carnosine. I know this first hand. When I stop taking them - my olfaction ability goes down. Alpha Lipoic acid has been proven to increase olfaction in a recent University of Dresden Study. Not only that, it is an amazing antioxidant and safe for daily use. 400 to 600mg per day should be used. (The study used 600, I use 400). L-Carnosine is also a smell booster and is abundant naturally in the normal olfactory bulb. Both are safe and available at any vitamin store. You can use these safely on a daily basis. Just don't over do it, because the studies show that mega doses of these substances are not needed to return your sense of smell.
I have suffered from anosmia for the past six years. This is characterised by total loss of sense of smell and flavour, interspersed by short periods of complete normality.
Two years ago I had a cortico steroid injection for long term back pain. This cured the back pain, but also immediately revived my sense of smell and flavour. The effect lasted for six weeks. Subsequently my doctor treated me with occasional doses of predisone, but is reluctant to continue with this because of the long term risks.
An ENT surgeon has recently recommended an operation on my ethmoid sinuses by way of an endoscopy. I don't suffer from sinusitis, but do have
daily periods of nasal stuffiness. The surgeon was at great pains to explain the risks of the operation, which has alarmed me.
Has anyone experience of ethmoidectomy as a treatment for anosmia. Are the risks as serious as suggested?
Nigel,
I have had 2 seperate surgeries on my sinuses. These were to remove polyps that were blocking normal airflow, causing severe problems with nasal drainage and were also a contributing factor to my anosmia.
I'm not sure what your doctor told you was involved but I would hope that if he were performing any type of surgery on your sinuses, it would be using the FESS (Functional Endoscopic Sinus Surgery) method.
There are risks as with all surgeries of course but this procedure is extremely easy on the patient. I don't know what risks your doctor explained however. The biggest risk is that since the procedure is close to your eyes there is a risk (EXTREMELY SLIM CHANCE) of damage to that area.
Please google this procedure or "fess surgery risks".
My first FESS was a piece of cake. 40-60 minutes, no bleeding, no packing of my sinuses and the only discomfort was a somewhat raw feeling in my nose. Similar to breathing in through your nose on a sub-freezing day.
My second FESS was just 6 weeks ago. Unfortunately my recurring polyps had become extremely hard to deal with and the surgery took longer than expected, I had to have some packing for 2 days and overall was just a more complicated procedure.
In neither case was there any pain involved whatsoever. Unfortunately, my sense of smell is still fleeting and after coming off the prednisone, has once again diminished.
But living the way I was was not what I call living. I am very happy with the outcome in the fact that I can BREATHE!
I would urge you to consider all options. Good luck!
Mike
Thanks for your information and reassurance. I shall see the surgeon again soon and check on the method.
Nigel
I had nasty sinus problems for 2 years, and was diagnosed with polyps. I had no sense of smell for about a year, due to the polyps. In March 2010, I had FESS to remove the polyps. My surgeon does not 'pac' the nose, which was great. Two days after surgery, I was making a cup of Cappuccino, and I was able to smell it. I was stoked. My sense of smell came back 100% right away, and remained so for about 4 months, then unfortunately dropped off quickly, until I was back to zero. Polyps are not present, and I can breath fully. I do not get strong reactions to seasonal allergies. I started to see an allergist and this week I started prednisone. (Flonase did not work). After 24 hours, I shoved my nose into a pickle jar, and wow, I was easily able to detect it. I read in more than one place where if you take flonase, but right after shooting it in your nose you lay on edge of bed with head down for 5-10 minutes, allow the stuff to flow into upper cavity, it works better. I am doing all of this now, and it seems to help. Will wait and see after prednisone is finished (2 week regminine) if the upside-down flonase thing does the trick.
I read alot where, after sinus surgery most patients cannot smell, but it later returns. I have the opposite. I was able to smell 100% within a week of surgery, but 4 months later it went away.
2 years no smell or taste. Tried it ALL nothing. Irrigation makes me worse. Surgery did nothing. Must be chronic swelling and polyps because prednisone does the trick. I take it once per year during the holidays to smell and taste turkey and trees etc also when I travel to smell the country. Flonase helps me breathe but does nothing for smell. I still use it cuz at this point not breathing is VERY frustrating! Had to choose my battles. I'm used to it all now I just ask people what things smell like.
Also have sumpters triad (sp?) Allergic to aspirin and polyps will continue to grow no matter what unless you're desensitized. I don't want to live on aspirin so I have adjusted and look forward to the holidays!!
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