treatments

I was recently (Jan.22) diagnosed with Idiopathic Sudden Hearing Loss (100db) with vertigo.

I have seen five ENT doctors and consulted with another dozen around the country. In the hope of helping others let me share what I have learned:

1) At the first sign of hearing loss or imbalance see an ENT doctor immediately. Tell the receptionist it is an emergency and you need to be seen today. Sudden hearing loss will alow you to jump to the head of the line in almost any ENT office. Once you have seen your first ENT doctor, make plans immediately after to see a second, third or fourth, especially if you are not certain you are getting the best, most aggressive, most thorough care.

2) Almost every doctor will put you on oral steroids. But they vary greatly on the dose and duration. Some do the traditiobal 60mg a day. Others use the formula of 1mg/kg/pd... which for a 200 pound man works out to 90mg a day.
Many prefer a two-week dose followed by a rapid one-week taper. Others like a full month before tapering down.
There are no studies showing one approach better than another but it would make sense to get as much steroids for as long as possble. Keep in mind that prior to 1980, studies showed styeroids were not effective. It was only when Dr. William Wilson in Boston in 1980 increased the dose to 60 mg and the duration to 10 to 12 days did the first proof of efficacy emerge. In short, there does appear to be a dose response. There is no evidence that an extra week or two will increase side effect risks but it just might make the difference in regaining some hearing. Again, this is why you need three or four doctors. If one wants to be conservative and you want a more aggresive approach, you don't want to be stifled. When all is said and done, you want to be able to look back and say I did EVERYTHING possible in a timely fashion.
(FYI-To make it easier on your stomach, many doctors recommend taking two Prilosec each morning.)

3) Intratympanic injections. If you're going to do them, they should be as soon as possible. Do not wait for completion of oral steroid therapy. These steroid injections are relatively new and controversial because their efficacy has not been proven, but the concept makes sense (getting more steroid directly to inner ear)and the risks are relatively small. Many doctors won't do them until there is convincing data.
Studies are now underway at Harvard, NYU, Cleveland Clinic and NYU. Unfortunately, you canot afford to wait. If you believe this is something you want, you need to push doctors at these and many other medical centers offering the injections to get them now... while onset of symptoms is still relatively recent.
The streroid many centers use is methylprednisolone. It stings. You can ask for dexamethesone, also an effective steroid but much easier to take. Again, it's your ear. You should have a say.

4) Anti-viral drug. Acyclovir is the most common. This should be given at the first symptoms, usually for a week. Again, randomized controlled studies have not proven a benefit and more studies are needed. But most reasonable doctors will give you this because there is little to harm.

There are several other treatments, unproven but many doctors are prescribing because they make sense and have limited side effects.

5) A one or two-month course of a simple diuretic to reduce any blood pressure in the ear.

6) Niacin to increase blood flow. You can get Niacin 500 mg time release at any health food store. This version will NOT cause flush in most people after the first or second day.

7) Antioxidants to minimize oxidative stress in the inner ear. High doses of Vitamin C (up 3 grams a day) or as much as your stomach can tollerate. Co enzyme Q-10 for cellular energy. (An effective and affordable version can be found at some large discount shopping chains.) There is no evidence of toxicity at 600mg to 900mg a day. Indeed, these doses are used in cardiomayopathy patients.
Alpha lipoic acid (600 mg per day) which significantly increase glutathion, a potent scavanger.

8) Fish oil capsules. Another effective anti- inflammatory. Six grams a day, if your stomach can handle it... will usually supply you with about three grams a day of EPA/DHA.

9) Hyperbaric oxygen. This is one of the few where the benefits do NOT appear to be worth the risks. There are studies underway in the US but so far there are no good data suggesting it can imrove hearing much more than 20 db. And even those cases are rare. The data from these trails are good, however, on ear infections and complications caused by this treatment. If you have one good ear, you need to think long and hard about any risks to the other.

In closing, I am still waiting for any sign of improvement but coming to grips with fact there may not be.

I cannot emphasize enough how focused and driven you must be to get any and all the therapies you want and deserve. Become informed. This is your ear. These should be your decisions. Time is of the essence. You cannot afford to be passive. You cannot afford to be patient.

For many, there is simply no effective treatment. But there can be some degree of consolation knowing you did all you could. Good luck.
And keep sharing your stories.