In February of this year I received a call from my local police Dept. That my 23 year old daughter had been airlifted to our nearest trauma hospital, she had been the victim of an attempted murder, she was in a coma for 5 days, she now suffers from dizziness, she is deaf in her right ear, and probably worst of all cannot taste or smell anything, she is so depressed over not being able to taste or smell, can anyone here give me any information on how I can help my daughter. Thank you, Jan

It sounds like your daughter is luck to be alive. I know others with no sense of taste or smell from head injuries. It is not the end of the world plus she is still early in her recovery.

Try to just be there for her to help her make it from one day to the next. I know it is difficult for both of you. She has a mind that gets frustrated easily. It is a symptom of the injury.

I wish I had more to offer.

Does she have access to a rehab counselor? A good TBI rehab counselor would be a big help.

My best to you and her.

You are so right when you say we are lucky to still have our daughter, I thank the Lord everyday that we still have her. Thank you for your advice about a rehab counselor, that's a great idea. Mark may I ask you another question, you said you have heard of others without taste or smell, did any of them regain those senses, and how long did it take? I know everyone is different, but we just need some hope. Thanks, Jan

Luke 1:37 For NOTHING is impossible with God.

My friend Justin has been without his sense of smell since his injury in 1994. His wife is pregnant so she looks forward to him doing diaper duty for the stinky ones. He has taste sensation but without smell, nothing tastes the same.

I don't know about the others. It is not uncommon in the brain injury support group I am a member of. We do not meet again until late August. There is a woman who had a similar life threatening injury from an assault who, despite her limitations that leave her totally disabled from paid work, appears to be able to live an enjoyable life. Many do volunteer work that helps them get past their limitations and struggles.

How are her speaking, cognitive, and memory skills?

Hi Mark,
Cognitive is a problem for her, I try to encourage her to go to speech therapy but right now she refuses. I think if she could just get some taste or smell back she would do better. I am taking her to Washington DC to the Taste and Smell Clinic, to a Doctor Robert Heinkin, actually I emailed him a couple of weeks ago and to my surprise this past Monday he called me personally to talk about my daughters case, he spent about half an hour on the phone with me and I was very impressed with him, although he can't make any promises he has a higher success rate with TBI patients then anyone else in the country. If you have a chance visit his website it may be helpful to the people you come in contact with. Please would you also pray for Kristen, we both love and trust the Lord. Thanks for answering my questions I really appreciate it. Blessings, Jan

The hormonal/Thyroid issue makes lots of sense.

Getting her hormones in balance can make a lot of things better.

I hope he can help your daughter.

Liftyourhands7.
I posted on this before so I try to be short.

I had a injury with bleeding on the brain about 3 years ago.
Regarding your daughter's loss of smell and I can completely understand since I lost my sense of smell and taste which I noticed only few days later since I was so confused with what was going on. Ofcourse I was bleeding on the brain.

My sense of smell and taste was not completely lost but every smelled and tasted nasty and very depressing. I even wished it was completely gone. I lost lot of weight because I hated most of the food which didn't help my recovery. I completely understand your daughter's suffering. It can be depressing too.

After 2 months I tried non-volitional Neurofeedback and immediately after my session my sense of smell and taste improved where I was able to enjoy some food. It also helped other symptoms to come down. Dizziness, headaches, fatigue etc., But didn't last long. My Psychologist mentioned some of her patients who lost the sense got it back after the therapy. Anyways when it comes to tasting flavor, smell plays a significant role.

Then I tried HBOT for about dozen session after a year but didn't see any change immediately.

Has taken B12, B6 consistently for about 2 and a half years. Latest test showed I am very close to maximum range with B12 so my neurologist wants to stop it for a while so I don't get toxic.

After about 2 and half year my smell and taste started to improve and still improving. About 4 months ago I started a new anti-seizure medicine called Trileptal and also went for Cranio Sacral Therapy. my smell and taste improved further and now it is about 80% during the day and close to 100% during night. I have no idea why it alternates. Overall my symptoms goes down after 9 pm. No one has a clue.

As for as I know Doctor Robert Heinkin is one of the best and I live only 15 mins away. I got in touch with the doctor office who is a specialist in this area 2 years ago. He doesn't accept any Insurance except Medicare and tests and treatments are intensive. Like he put you in an fMRI and ask you to smell and look at the brain. Tons of blood tests. Probably they gave you the bloodwork needs to done which you can do it prior from your PCP to save some money. Not sure he changed any of the policies.

I heard treatment wise it can be anything from Transcranial magnetic stimulation, asthma drug seems to help if there is a problem with biochemicals.

Glad to know he is honest about the treatment. No one can guarantee. Only way to know whether it works or not is to try.

I even think if I go to him he can make it perfect but at this point I am handling other ****** symptoms like dizziness, pain etc., and paying lot of money since Insurances doesn't pay for the stuff I am trying. Also my smell and taste recovered to a good point where I can smell and enjoy food so I am not depressed anymore.

Be positive and also cautiously optimistic.

Please keep posted and let us know how everything goes.

Cheers!



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Pcslife,

Oh my goodness thank you for your post, I am so glad you have your taste and smell back, you have gone through so much! My daughter has absolutely no smell or taste, Dr. Heinkin asked me if she had any taste or smell at all, when I said no it was a little more concerning for him, so I think the fact that you had some smell and taste even though it was nasty, you had a better long term prognosis. There are times when she describes a burning taste, did you ever have anything like that? Other then that burning taste which has pretty much not happened for a while, she has nothing. We live a long way from Washington DC, and besides that we are on an HMO, but I am changing her to a PPO in September, it's open enrollment on our insurance, then I will be bringing her to DC. Any help or encouragement you can continue to give me will be greatly appreciated. Thank you for being so open and informative, hope you don't mind if I come back here and ask you more questions as I think of them. Blessings, Jan

Liftyourhands7,
You can ask all the questions you want. Your information after your meet up with the doctor also may help folks who suffer from this condition. You are right about my smell (which I didn't lose completely). Though it was very nasty and especially if someone smokes I felt very nauseated in spite of my normal nausea. I dont have that much nausea because of cigarette smoke and avoid smokey environments now.

Regarding burning smell many people reported (from other site) but I don't think I had that. Probably Phantosmia (though all are clubbed under Anosmia). Very few in this forum has smell disorder and I remember one more person with severe diffuse injury also lost and got it. Few reported spontaneous recovery too. For some weird reason docs come out with the number - 6 months. Mine improved only after 2 years.

Dr. Heinkin asking the right questions and seems like honest about it. Even though you have PPO, does he accept? For me they told I have to pay all in cash and I have to bill the insurance later. It can cost few thousand dollars. As I mentioned I am dealing with other debilitating symptoms like dizziness, pain, fatigue etc., (like many others in the board) I thought I can come to this condition later. At this point I don't see a need. Losing a sense and getting it back (though not 100%) is a profound experience.

I was very depressed so I can understand your daughter's feeling. One way I handled was I thought this is better than losing Vision. Unfortunately there is no a good workaround for this condition. Some docs suggest spicy food but I don't think it is a great idea. It messed up stomach even though I can handle spicy food decently. Also you don't taste the spice but the chilli hot in it. But you are saying your daughter can taste nothing? I was like that for about a week after my TBI and I had no idea what was going on. If she is frustrated/depressed only thing you can do is just listen bcuz suggesting something can make her more frustrated.

If her depression is too much then doctors will suggest anti-depressants. One good thing is she is young and that can help in recovery. Also tell her it is not over since you are doing the best for her recovery.

Keep up your spirit and send my positive feelings to your daughter. Come back and ask anything anytime.

Cheers!