Cherry season

It’s been quite a cherry season for me this year. I’ve been eating bags and bags of it (thanks to the sales!) for weeks. Cherries are special for me as they were the first fruit or any kind of food I was able to eat and even enjoy when I was still suffering from severe parosmia two years ago. They were expensive then too, but that didn’t stop me. I remember it was cherries first, then watermelon (even though with some bad after taste), and sushi that I was able to eat in the first 3-6 months following my head injury and loss of smell/taste.

After a little over 2 years, I’ve come a long way. I’d say I have my sense of smell and taste back 80-90% by now. I am not sure if it’s the ALA or just time healing and regenerating the sheared olfactory nerves or both, but I am grateful. It’s more than I was hoping for and a whole lot more than the doctors promised. I hope it gives hope to some of you on the same boat.

As of now, I can eat most foods except for fried foods. Most sweets still have an obvious bad after taste. It’s funny with desserts though, some are more tolerable than others, but who needs them anyway! I am thankful I am able to drink tea and occasional coffee. I am also thrilled that I can enjoy cooking again, with the onions and garlic smelling good and appetizing. There are some greens that still taste quite bitter but they taste bitter to other people I know too.

Oh, Coke still doesn’t taste right. It tastes more like medicine. I can drink Sprite or Mountain Dew ok, but not Coke. I am not a big soda drinker anyway, I rarely drink any, more as a test to check my taste progress. As for the perfumes, I can definitely sense some improvement, but I still don’t use any.

I wish you an enjoyable summer with pleasant smells and tastes.

Vitamins

I’ve been taking Alpha Lipoic Acid for about a year now. I wrote about its possible chances of helping with smell loss before. I am not sure if that’s what has helped me regain most of my smell back, but I still keep taking it as I read good things about it overall. I also take a whole food based multivitamin now. I quit taking synthetic ones.

After some research, I found this site www.iherb.com to have better prices and products than most places. I’ve been happy with my orders so far. They even sent me a code that I could share with friends. You can save $5 on your first order by using this coupon code: PEK346 at the bottom of the order page. Let me know if you know of a better place with better prices and service.

Strawberries and bananas, finally..

I can eat strawberries and bananas again! And I ate tons of strawberries in May as we went strawberry picking a couple of times. We picked about 20lbs each time! They still have some kind of an off smell/taste but much more tolerable and almost enjoyable. I can pretty much eat everything now, except for fried food and sweets. Well, who needs them anyway.

The things that I get bad smell/tastes from at the moment are narrowed down to arugula, parsley, some cereal (such as Kashi Heart to Heart or any Cheerios type cereal), fried and baked “goods”. I don’t eat any meat or processed foods any more (such as deli meat) so that helps, too.

I can taste and enjoy most fruit. I eat watermelon for breakfast almost every day. I love my green smoothies. I use apples, oranges, pears, mangoes, pineapple, kale and spinach a lot. I prefer green apples to red ones. Sweeter apples still have some kind of a bad after taste. I can tolerate most veggies, too. However romaine lettuce still has a bitter smell and taste. I can still eat it, but iceberg tastes better.

I can also eat fish, eggs, dairy, and most bread. I can even eat nuts which have been tasting rancid for the longest time. I enjoy eating almonds and pistacchios again. I remember not being able to tolerate them in January when we went to Turkiye. So even after 10 months after my head injury, nuts were tasting bad. But after 2-3 more months, things started to get better. So, try to be patient. It will get better.

The only dessert-besides all the fruit I have-is dark chocolate. Milk chocolate tastes too sweet now, thus no good for my taste buds any more. Although I used to eat and enjoy tiramisu in the past year, even shortly after my accident.

I don’t do anything special for my nose any more other than the occasional Nasonex and Saline sprays when it gets itchy from allergies. I keep taking multivitamins and alpha lipoic acid. I quit taking synthetic vitamins though. Now I only take natural whole food based ones. Now that I eat healthier, I don’t even take them every day.

I’ve been reading the comments and wanted to tell everyone to keep strong and hopeful. It can and will get better. I’ve probably recovered 80-90% in about a year. I remember how miserable I was about this time last year, so I certainly know what you’re going through. Try to stay healthy and it will come back!

There is hope..

I have wanted to post this for so long but somehow I couldn’t get around to it. However I’ve been reading all the comments and sharing your pain.

The good news is things are getting better. I’m still taking my daily vitamins and Alpha Lipoic Acid. I don’t know if they have anything to do with the progress, but there is definitely good amount of progress.

Things I couldn’t tolerate smelling or eating before such as orange juice, hot tomato sauce, chicken, meat, baked goods (and a lot more) taste much better now, some of them pretty close to the actual taste like pizza. I remember having a hard time walking into restaurants and pizza places in the first months following my head injury because of the horrible smells. Now I can even enjoy the smell of pizza once again.

Chicken and turkey are still hit and miss but I can eat them better. Fish is another story though. I’ve been eating mostly fish since my accident since it was one of the few things that didn’t have any bad smell or taste for me. However recently I’ve been getting a bad fishy smell from both raw and cooked fish which isn’t appetizing at all. It’s very weird how my sense of smell has been changing over the months. I really hope this bad smell doesn’t last as I really like fish. That’s about the only negative change over the past weeks.

I can finally tolerate the taste of onions in food. Garlic is ok too. I even started eating some meatballs (from red meat that I stayed away for months).

I also started drinking coffee for the first time after months as coffee had an unbearably strong spicy smell for so long. Now it smells somewhat pleasant but still far from the actual smell I should be getting. Still, there’s progress.

Sweets are still not very pleasant. Rarely, I’ll find something that I enjoy eating (like tiramisu) but most cookies and cakes still taste funny, and so does chocolate. However most everything is edible by now except for some weird tasting greens and spices. I can even eat some fried food although there is always that unpleasant after taste. It usually depends on the food and who makes it.

Oh, I still can’t stand the taste of coke. It tastes like some bad medicine!

So hang in there, there is definitely hope. I could smell hardly anything right after my accident and then went through the horrible stages of bad and distorted smells. Now things have calmed down and got much better. I still have a lot of distorted smells but they are more bearable and you get used to them. I can still detect cigarette smoke as soon as I walk into a restaurant even with the new distorted version of it. It’s still a very disturbing smell. On the other hand, there are times that I still have a hard time detecting my son’s poopy pants. Or that I get bad stinky smells from some cereal. But I feel that I’ve come a long way and I’m happy for it. Please don’t lose your hope.

5 month update

It’s been a little over 5 months since my head injury (3/31/07) and I can say that I am doing better than I used to. That’s not to say I can smell/taste right again but there is some improvement to speak of. The only ‘right’ smell I get at the moment is from roses. Funny eh? I still can’t tell my son’s poopy diapers apart from oatmeal cooking on the stove! Well at least I don’t have the horrible exhaust smell in my nose any more, so that’s a big relief. Of course I still miss a lot of ordinary smells such as the ocean, rain, fresh-cut grass and the list goes on…

My taste is improving too I suppose although it’s hard to say. It could be that I am getting used to the new and weird smells/tastes. I can tolerate strawberries better now but I still can’t eat bananas. Cherries and raspberries have been the best-tasting fruits so far. Watermelon tastes almost normal too. However onions, garlic and cucumbers are another story…

Fried food is the worst tasting and I am not really missing it (except for calamari). Most cooked or hot food taste bad. I eat a lot more sushi now as that seems to be the easiest to tolerate. I haven’t had a burger in months… I still eat pizza even though it doesn’t really taste good. I guess that’s one thing I can’t give up; bread and cheese.

I can enjoy drinking tea again. I could even tolerate some wine recently. Coffee though is still too harsh. It doesn’t smell or taste like coffee at all. It’s a disturbing one.

So overall I want to believe that I am getting better and hoping for more as I approach the 6 month mark when doctors say to expect some recovery. Then again, what do they know?

Alpha lipoic acid

Besides trying to eat healthier, I started taking alpha lipoic acid this month. I’ve read that it might help with smell disorders. We shall see… I also try to take my multivitamin daily. I’d like to hear from people who have benefited (or not) from taking alpha lipoic acid. I would also LOVE to hear from those who have been lucky enough to see some recovery from their smell disorders, especially those with a head injury history like mine.

My smell/taste situation is pretty much the same. Everything is greatly distorted. On top of that I started getting tingling and numbness in my hands and arms lately. I am not sure if it’s related to my injury or not, but it’s starting to concern me. I get intense ‘pins and needles’ feeling in my fingers in both hands even after little activity such as carrying grocery bags or brushing my teeth. I am definitely going to see a neurologist to find out more.  

3 months already…

I’ve reached the 12 week mark this month when I was hoping to see some recovery. I can’t really speak of a recovery yet but there might be some improvement with my sense of smell.

I still have the non-stop foul odor in my nose but it’s not as strong or unbearable as it was back in April. It’s not like a poisonous exhaust smell any more. It’s more like a rancid snot, sweat, rotten food or trash mixture. I feel it stronger first thing in the morning and at different times of the day. Heat definitely makes it worse. I am not sure if  the saline I try to use daily is really helping either.

I am still severely hyposmic; that is I get very distorted smells and tastes. I can detect an odor around me but I can’t tell you what it is. I can sometimes tell that it’s a sweet smell, but that’s only because I get the same smell from most sweet things. That is not to say it’s a normal sweet smell or the same smell normosmic people get from sweets. I’m just learning and getting used to the new smells I get from things. It’s neither horrible nor pleasant.

The worst part is that most food tastes like the foul smell in my nose. My taste is very distorted too since taste is 90% dependent on smell. Everything has a new smell and taste for me. I can taste if something is sweet, sour, bitter or salty, but I don’t get any flavor. I taste the nasty smell as I swallow food. Therefore, eating is still not an enjoyable task. It’s more of an experiment each day to see ‘if things will taste somewhat normal today’..

I was having little muffins with colorful pieces in them the other day. I thought it was some kind of a fruit cake. It turned out they were ‘pepper muffins’. Red and green pieces in them were actually peppers, not fruit. That’s a summary of how my taste is right now. I wouldn’t be able to tell what I am eating if it wasn’t for the texture. I definitely wouldn’t get it right if I were blindfolded.

Fried food still tastes bad but maybe a bit more tolerable? I normally stay away from it except for just trying a few fries every now and then to test my taste. Surprisingly, french fries tasted a bit better last night. Broccoli on the other hand was a disappointment. Most fruit still tastes rotten. I really miss strawberries. Cherries and grapes taste edible, but I still don’t get full flavor. If I can tolerate a food then I consider it good at the moment. Some sweet cereal tastes really foul. Most sweets including chocolate taste very similar, but not at all like the real thing. Some are more bearable than the others.

I had the courage to get back in the kitchen and cook more lately. That’s an improvement I guess but I am still not getting any normal smells. I still get a very distorted and unpleasant smell from onions, garlic, and most spices. I can’t smell most of my favorite spices like mint, cumin or oregano. I get some kind of a smell but not a pleasant one or like the real thing. Even yogurt tastes weird. I try to cook and eat more healthy and kind of rewire my brain and teach it to like the foods I used to enjoy. I quit eating beef altogether (especially after watching ‘Fast Food Nation’)! I don’t enjoy chicken either. I only cook or order fish and veggies. I still eat pizza and pasta too but pizza still smell and taste funny. I usually get it without the tomato sauce which tastes quite unappetizing. I always loved tomatoes and still insist on eating them fresh but they smell/taste really unpleasant when cooked since my head injury.

The only good smells I get are from roses and rose scented candles. I thought I could almost smell them ‘right’ the other day, but then again I am not sure if I’d really be able to tell they were roses if I didn’t see them. I get somewhat of a pleasant smell from Speedstick deodorant although vague. Most alcohol based stuff like cologne, perfumes and sanitizers don’t smell right or pleasant. Soap and shampoo still smell pretty bad too.

I do miss a fresh clean smell very much like freshly cut grass, clean clothes, ocean breeze or baked bread and mostly the smell of my baby…

SEVERE HYPOSMIA

This is what it says on my Olfactory Function Test results. Olfactory function testing was administered using the butanol odor detection threshold test and the seven item odor identification test. My butanol detection threshold scores were 10/50 on both the left and right sides.

In the odor identification test, I was unable to correctly identify all seven of the common test odorants except for one, baby powder. Trigeminal nasal sensations were evaluated using Wintergreen, Vicks and Ammonia and were found to be intact bilaterally. Test results indicate that I have SEVERE HYPOSMIA on both the right and left side. My score is 20/100 (too close to anosmic!).

This is how the scale goes;

0-10       Anosmic
20-40     Severely Hyposmic
50-60     Moderately Hyposmic
70-80     Mildly Hyposmic
90-100   Normosmic

I am still only getting distorted smells. I haven’t had a ‘normal’ smell so far. The bad smell in my nose is still always there but not as horrifying as it used to be last month. It’s still rusty, rotten and rancid; not a pleasant smell to wake up with every day at all.

Food has no flavor. I don’t even know why I still have the urge to eat at all. It’s mostly to experiment if things will taste somewhat different and better. Fried food is the worst. I can’t stand the smell, I don’t eat it at all. (Well I try a couple of fries once in a while to see if there’s any improvement.) Fish is still the easiest to tolerate. Salad is good, refreshing and crunchy. It’s all about texture now anyway. The worst part is fruits even don’t taste right. Strawberries and bananas still smell/taste rotten! I can somewhat enjoy apples and red grapes (green ones are too sour). It’s odd because I normally like sour, and don’t care too much about sweets.

Of course another bummer is I can’t taste chocolate! Sweets seem to have the same weird smell and taste. I can tell if there’s an ice-cream shop around from the waffle cone smells, but it’s nothing like the real smell of the waffle cones which I used to love. Desserts, cakes, cookies all taste the same!

I’ll go try my husband’s crepes with chocolate sauce now which used to be one of my favorite breakfasts. I wish I could smell/taste at least some of the food somewhat normal. The smell I am getting from the kitchen so far is nothing like it should be.

Smell and Taste Tests

I had my appointment at the Smell and Taste Clinic at VCU in Richmond today. I didn’t do well in the smell test at all. I got 20/100 right and some of those were just guesses.

I thought chocolate and coffee were spices. Ivory soap smelled like rubber or burnt something. Peanut butter and cinnamon were too vague for me to even detect a smell.

The only ones I got right were baby powder, Vicks, wintergreen, and ammonia. The only pleasant smell was the baby powder. The other three burnt my throat. Ammonia was the worst! It hurt my nose and throat with even a quick whiff.

Dr.Costanzo was really nice and friendly. He tried to encourage me about my condition, however, he didn’t have a miracle cure to bring back my smell either. He thought my trigeminal nerve was still working and that was why I could still differentiate between some smells – even though all my smells are distorted. I need my damaged olfactory nerves to regenerate so, maybe, I can  get a normal smell again. He said it was still too soon for a full recovery. In a study he did that included 700 patients, 1/3 of them got better in 3-6 months time. He thought I had made some progress. The foul odor in my nose is not as horrid as it was a month ago, but everything is still greatly distorted. I haven’t had any familiar or ‘correct’ smells since my injury.

Dr. Costanzo didn’t think the controversial zinc would help either. I am not taking anything other than regular vitamins at the moment. They didn’t prescribe anything today either. They just told me to be patient and wait.. and be careful in the kitchen and with gas etc..

It’s been over two months, 65 days to be exact, without ‘normal’ smells and taste. I did well in the taste test today, however since taste is 90% dependent on smell, I still have no flavor. I just taste the basic four and the same stink in my nose that gets carried onto my food too. I am anxiously waiting for the ’big day’ when things will smell and taste right again.

Chances of Recovery from Post-Traumatic Smell Loss

My condition seems to be more unique and difficult to recover from due to its cause. These articles don’t give me much hope but facts are facts. There is a slim chance that I might get my sense of smell back in months or years–that is if I am lucky enough..

 Recovery of olfactory function following closed head injury or infections of the upper respiratory tract: 
“During an observation period of approximately 1 year, more than 30% of patients with post-URTI olfactory loss experienced improvement, whereas only 10% of patients with posttraumatic olfactory loss experienced improvement. Furthermore, age plays a significant role in the recovery of olfactory function. “
 

 Treatments for olfactory loss from Head trauma(HT)/ Post traumatic injuries:
“…the olfactory system has the ability to regenerate. Indeed, there is the potential for recovery after a head injury and animal studies have demonstrated that recovery is possible. Costanzo recorded cells from the olfactory bulb of a hamster and demonstrated recovery within nine months. However, in humans the prognosis is much lower and the estimated possibilities for recovery vary widely from 15% to 39%.” 

“It is generally believed that this aetiology can not be treated with drug therapy. However, approximately a third of sufferers do recover with the most likely cause being natural regeneration of the olfactory system. The onset of regeneration usually occurs within three months of the trauma ; beyond one year then the chances of recovery are slim. Early recovery may occur due to mechanisms such as the disappearance of blood clots, and later recovery, due to regeneration of neural elements. Complete recovery may take approximately five years. 

CAUSES of OLFACTORY LOSS

Aetiology	% patients
Head injury	19*
Post URI	17*
Nasal/sinus disease	16*
Idiopathic-nasal	17
Toxic exposure-nasal	5
Multiple	5
Congenital	2
Age	1
Idiopathic-oral	9
Miscellaeous-oral	6
Toxic exposure-oral	1

* Main causes of olfactory loss, which accounted for >50% of the reported cases. (Original data obtained from Seiden, 1997). (ANOSMIA by Helen Gatcum and Tim Jacob)