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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!

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?

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.  

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…

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.

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)

nose32.jpg nose2.jpg nose1.jpg

1. Which cranial nerves and/or part of my olfactory system are damaged that cause my loss of smell (anosmia) and distorted smell (parosmia)?

2. Why did parosmia start two and a half weeks after my injury? I didn’t have this nasty burnt flesh like smell the first 19 days after I fainted.

3. What is causing this God-awful nauseating smell? Could it be the nerves regenerating? (wishful thinking!) Could it be caused by Prednisone? (The first 6 pack of it didn’t cause anything.)

4. Why did I faint? I was weak and dehydrated from throwing up the night before, and it seems like a stomach bug that hit the whole house since other family members got sick that weekend too. However I can’t help wonder why it hit me so hard.

The only other times I fainted in my life were; once when I was pregnant. That was after a trip to Turkiye when I was 3-4 months pregnant. I was jetlagged for almost a week (it seems to hit me harder the older I get. Of course it was expected to be worse while pregnancy). I went for a walk with my aunt and on the way back, I got dizzy and nauseated as I was going up the stairs. I fainted while my aunt was trying to open the door, but luckily she was there to hold me. I didn’t collapse and hit my head or crack my skull like this time. After the incident, I didn’t worry much about it, thinking it was normal during pregnancy.

And the other two times were years ago when I was in high school and college. I passed out whenever I was given a penicillin shot; one by a nurse, one by a pharmacist. So now I make sure to put down that I am allergic to penicillin on any medical records.

So this was really the only time I fainted kind of out of the blue. I wonder if there were any other underlying causes. My husband thinks it was normal after throwing up so much and being dehydrated. I don’t think he can handle any more things going ‘wrong’ with me. Temporal bone fracture, BPPV, anosmia, parosmia; all due to head injury. I think I got more than enough to deal with.

BPPV

“In Benign Paroxysmal Positional Vertigo (BPPV) dizziness is thought to be due to debris which has collected within a part of the inner ear. This debris can be thought of as “ear rocks”, although the formal name is “otoconia”. Ear rocks are small crystals of calcium carbonate derived from a structure in the ear called the “utricle”. While the saccule also contains otoconia, they are not able to migrate into the canal system. The utricle may have been damaged by head injury, infection, or other disorder of the inner ear, or may have degenerated because of advanced age. Normally otoconia appear to have a slow turnover. They are probably dissolved naturally as well as actively reabsorbed by the “dark cells” of the labyrinth which are found adjacent to the utricle and the crista, although this idea is not accepted by all.

BPPV is a common cause of dizziness. About 20% of all dizziness is due to BPPV.

The symptoms of BPPV include dizziness or vertigo, lightheadedness, imbalance, and nausea. Activities which bring on symptoms will vary among persons, but symptoms are almost always precipitated by a change of position of the head with respect to gravity. Getting out of bed or rolling over in bed are common “problem” motions . Because people with BPPV often feel dizzy and unsteady when they tip their heads back to look up, sometimes BPPV is called “top shelf vertigo.” Women with BPPV may find that the use of shampoo bowls in beauty parlors brings on symptoms. An intermittent pattern is common. BPPV may be present for a few weeks, then stop, then come back again.

What causes BPPV?

The most common cause of BPPV in people under age 50 is head injury . There is also an association with migraine. In older people, the most common cause is degeneration of the vestibular system of the inner ear. BPPV becomes much more common with advancing age. In half of all cases, BPPV is called “idiopathic,” which means it occurs for no known reason. “

To read the entire article, click this link: Benign Paroxsymal Positional Vertigo

I had my ENG test at DePaul Hospital’s Hearing & Balance Center in Norfolk yesterday. It took over 2 hours. The first part was the easiest. I had to wear huge goggles over my face and follow a red light on a bar on the wall. They recorded my eye movements through the goggles onto the computer to check my balance. I did fine in that part of the test.

The second part was the worst. They held my head and laid me down real fast with my head hanging down the table, to catch the spinning at its best and watch my eye movements. This wasn’t fun at all! It scares me when I spin that fast. It’s a very disturbing feeling. It only lasts for about 30 seconds or so but it’s long enough to freak me out. I’ve been trying to avoid this spinning by lying very slowly and on raised pillows since my accident. I still can’t prevent the spinning. It spins fast for a minute or less every time I lie down. If I do it fast or move my head around, then it spins faster. It was much worse the first days right after my injury. Now maybe I got used to it or it’s getting better, but it’s still there. I strongly held onto the audiologist’s arm with fear when the spinning escalated as he laid me down. They had to repeat it several times because they made a mistake and recorded over the first trial which was the worst one. It didn’t spin as bad on my left side, my right side was far worse.

The third part of the test was very uncomfortable too. They blew warm and cool air into my ears, and held it there for a long time. After that, she asked me random questions like ‘name countries or food starting with this letter’ and going down the alphabet, just to make sure my brain was still functioning! At the end, she had me look through the goggles which had been kept shut throughout the second and third parts of the test, and stare at her thumb which she was holding over a flashlight.

I passed the first and third parts of the test as far as I know. The second part was where the problem was. I was diagnosed with BPPV: Benign Paroxsysmal Positional Vertigo. They said I had my ‘crystals’ moved out of their place where they should be in the middle ear and moved to another area. They said it was one of the ‘better’ problems to be diagnosed with as a result of this test and it was treatable. They did the treatment right away which was a lot like the test itself. They kept moving my head to different areas in a certain sequence, to move the crystals back to their place.

Now, I’m having to wear a soft cervical collar for the next two days as a reminder to refrain from bending over or looking up. Also, for the first two nights, I need to sleep on a reclining position at about 45 degrees. They recommended a Lazy Boy or other upright chair, sleeping with the collar on. After the first two nights, I may take the collar off but I still need to be careful with my head movement and activity. Starting on the third night , I need to sleep on my left side, the opposite side of the procedure, for the next 5 nights.

After completing all the directions for one week, I need to call the hospital to let them know how I feel. I should not experience any true vertigo (room spinning) during this week if the treatment was successful. They say this procedure has a 92% success rate. If not, they’ll repeat the treatment. We’ll see how lucky I will get this time.

skull4.jpg

Temporal bone fracture is what I have on the left side of my head, next to my ear. That must be where I hit the ground real hard when I fainted on March 31. The link below seems to have some good information about it, including my symptoms of vertigo and cranial nerve damage as a result of a temporal bone fracture.

Temporal Bone Fracture

As it is suggested on this site, I need an MRI, more than just a CT scan to show the nerve damage. “Although CT scanning may be appropriate for assessing complications, magnetic resonance imaging (MRI) is useful for identifying vestibular hemorrhage, determining the extent of brainstem injury, and demonstrating nerve compression.” The hard part is to find the right doctor to take the necessary steps towards some answers and recovery.

postskull.jpg extbaseskulll.jpg temporalbone.jpg

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