Wednesday, August 17, 2011
Tuesday, August 16, 2011
Friday, August 5, 2011
The following observations should not be taken as medical advice, as I am not a doctor. All medical decisions should be put in a doctor's hands - if you are able to find one who will "deal” with this illness. On the other hand, many ME patients and their advocates are "on their own" with this disease and its peculiarities. Consequently the normal way of "doing business" does not apply. Most doctors take one look at this illness, and turn away.
Hyperacusis, or noise sensitivity, can be a nasty symptom or set of symptoms of ME. It is one of those neurological breakdowns, along with photophobia, sensitivity to touch and sensitivity to smell or taste that plague ME patients. The symptoms themselves can take various forms. Hyperacusis often is attended by tinnitus or misophonia, two other serious neurological hearing problems.
Noise sensitivity arrives either rapidly or slowly, stays or goes away, gets better or worse - and always follows a course of its own. In other words it is like everything else in this unpredictable illness that is ME.
Hyperacusis is one symptom in the large array of symptoms of ME that affect any and all organs of the body. For those who seek general information on hyperacusis read here and here and here. There are many other valuable information sites. Maiji Haavisto, who writes so well on ME medications in her book "Reviving the Broken Marionette", has an excellent article on photosensitivity and hyperacusis here.
In reading the internet one can deduce this:
Dr. Paul Cheney might suggest taking Klonopin or Neurontin to lower the threshold of excitotoxicity.
Abraham Shulman produced a study showing the benefit of taking Neurontin (along with Klonopin) for hyperacusis. Unfortunately there is also ample anecdotal evidence that Neurontin can make hyperacusis worse. So the patient or advocate is put in the usual bind. Will this drug make things better or worse? Do we want to take the chance?
Dr. Kenny de Meirleir would suggest that the trigger is excessive H2S in the gut. His treatment might be vancocin or rifaxin in short doses, combined with probiotics VSL3 and Mutaflor.
Dr. Dale Guyer might lean towards the idea that the hyperacusis is caused by low adrenal function.
Dr. Jamie Deckoff-Jones speculates on her important blog about sensitivity issues. "I was speaking to the father of a patient today who is having severe light and sound sensitivity, much like the very severe patients in the UK and Norway. Ali is being triggered by smells, even natural smells like essential oils. My light bulb for today was that these problems are all very similar, all extremely heightened responses to different sensory stimuli. My first symptom was heightened and altered sense of taste. Many patients, and autistic children, have problems with touch, can't stand tags in clothing, are hypersensitive to light touch, etc. I suspect it's a kindling phenomenon, less than seizures, but similar, a little less than a full-blown disease, as often happens in ME/CFS. Networks of neurons are being synchronized inappropriately by sensory triggers. Repeated stimulation leads to threshold reduction.”
Right away the patient, or advocate, is confronted with various "possibilities”, or causes, of the sensitivity issues: brain excitotoxicity, excess H2S, low adrenal or thyroid function, or continuous mini-seizures. To these can be added mercury poisoning, mitochondrial myopathies, and Lyme disease. What can one make of this? Perhaps the reader can add to the list? I know what ErikMoldWarrior might add - and he is correct.
Several interesting items surface on the internet. The first is the repeated connection of neurological sensitivity issues with Lyme disease. Certainly these issues are also associated with ME, but since no one knows what ME is (or it doesn’t exist), suddenly Lyme becomes a more interesting avenue to explore. Dr Brian Fallon, a noted Lyme researcher, conducted a very small (could hardly be smaller) study at Columbia using the drug Carbamazepine. (Please notice the name of Pawel J. Jastreboff on the study.) This study followed two Lyme patients who took Carbamazepine for hyperacusis and both showed improvement. There was no follow-up study. My email questions to Dr. Fallon went unanswered.
In reading about Carbamazepine, one notices that it has certain side effects, some of which are not pleasant. This includes Stevens-Johnson syndrome that you can read about if you want to get frightened or discouraged. SJS will resurface when and if Rituxamab becomes a real possibility for ME.
The prudent advocate will approach this very difficult Hyperacusis situation with caution. Hyperacusis is an extremely delicate issue, and it does not lend itself to a lot of banging around. Initial hopes will lean towards the noise sensitivity going away on its own- exiting from the stage in the same fashion that it made its appearance. The chance of this happening is low, but one can hope.
The next logical step is to rule out an ear infection. Having a doctor look into the ears rules this out pretty quickly.
It also seems reasonable to make a concerted effort to determine if any existing therapy or drugs are producing this symptom. This process involves getting off of all new (or old) drugs (or supplements) that might cause hyperacusis. This process in itself takes some time, and precludes moving forward at the same time. In order to be rational in these situations one must be patient and thorough and, as usual, the patient is on their own. If one has the privilege of asking a doctor about such neurological sensitivities, one gets a shrug of the shoulders.
One can read that Doxepin, Elavil, Lorazepam and various sleep/anxiety medications have side effects of sensitivity issues, particularly photophobia (or light sensitivity). The side effect numbers are very small, but they do have to be considered.
In terms of drug treatment one can read that Klonopin or Neurontin can both help and exacerbate hyperacusis. Does one want to take the chance with these drugs? It is a flip of the coin.
Having set aside the idea that drug or supplements are the cause of the hyperacusis, one has to keep looking for a way out.
There is evidence, slight, that magnesium can help, especially if it is combined with high dose B6. There is one study of autistic children that shows some benefit of this therapy. There is also some thought that thiamin deficiency has something to do with hyperacusis, and this can be seen in another post. Sleep deprivation can certainly exacerbate sensitivity issues, leading one to fix problems with sleep.
In the meantime, the patient has to be protected from loud or unexpected noise. This can take many forms - including building sound blocking rooms and windows, using drapes, getting rid of noisy neighbors, shutting down the nearby lawn mowers. Once one enters this business of trying to avoid or limit sound, one notices that certain problems arise. For instance, it is very difficult to silence birds or children's playful voices, or traffic moving by on the street, all of which cause great distress in the patient and the advocate, neither of whom really knows what is happening or where this came from or where this is going. Welcome to nightmare land.
Ongoing, severe hyperacusis can be life altering. One ME patient with serious hyperacusis says that it “twists the soul” (or "warps the soul"). The situation can be worsened by other sensitivities, the inability to tolerate light or the inability to speak above a whisper, or indeed, speak at all. The consequence of hyperacusis, especially if it is attended by photophobia, is that the patient is "walled up"- completely cut off from reality, unable to have information moving in and out of themselves. Can you imagine the effect of such isolation? Most of us would go right off the deep end. It takes an unusually strong person to withstand this peculiar tortuous form of brain sensory attack. At its worst, hyperacusis is a living nightmare.
Floating in the background is one treatment approach, one that indicates a way to overcome or neutralize hyperacusis, no matter the cause. This treatment - Tinnitus Retraining Therapy (TRT)- places hyperacusis in a category of being something that can be reversed.
An ENT doctor, a friend, was kind enough to look at my daughter’s ears (determining that there was no infection). He wrote this to me:
“One thought about noise sensitivity - the typical remedy for that is to gradually increase a white noise exposure over time. It is based on the body’s ability to accommodate: when you are in a noisy room full of machines, but you don't notice the sound until someone turns them off - that is because your body accommodates and recognizes that it is not important sound. So noise isolation can TYPICALLY make the sensitivity worse. What we would generally recommend is that the person get a very quiet, non-irritating white noise - such as soft radio static, a fan, or a baby sound generator. The person very gradually increases the volume as they find they have tuned the sound out. If one couldn't tolerate it on the lowest setting, you could put it on a timer to start at night while sleeping, and turn off in the morning for a while, and eventually to be on when you wake up and so on. Just like being in the dark all night makes the bright bathroom lights hurt at 3am, total sound isolation can have the same effect.
The heavy-duty sound isolating head phones may be causing her pain - they work great, but put a lot of pressure on the ear, which can make it tender.”
The advice was welcome news as it reinforced the direction that I was moving. I had been aware of TRT for years, in relation to tinnitus.
TRT is fully and completely adaptable to hyperacusis. TRT is a tinnitus/hyperacusis therapy that was invented by Margaret Jastreboff and Pavel J. Jastreboff. It is taught and practiced across the US (and I assume other countries). It is fully adaptable to ME and Lyme patients, and in many ways fits well other treatments with which ME patients might be familiar – meditation, resting and pacing, and amygdala retraining, among other things.
An article by Pavel Jastreboff and his wife Margaret on hyperacusis is here.
The treatment protocol is very specific - yet time consuming, and slow. It is available in two forms – either with the guidance of a doctor or an audiologist, or done on one’s own. Information on doing it on one’s own can be found at the Hyperacusis network where you can order a pink noise cd and receive full instructions on how to proceed.
The key to success in TRT is discipline over time. Often it takes months to see improvement. Baby steps are the name of the game.
Fear of the unknown rears its ugly head with these sensitivity symptoms. They are terrifying in themselves, especially since so little is known about them. Overcoming the fear and uncertainty is the first step to take to escape hyperacusis.
Several key ideas are important. Most patients suffering from hyperacusis try to protect themselves by covering themselves up with earplugs and noise blocking ear protectors. While this is a natural reaction - to pull back into an avoidance mode - this protection only heightens the problem. The patient must get off the ear protection devices. This might take time, and it is also dependent on several other things.
The second important point is that the patient must learn (or know) that noise (what they perceive as loud noise) will not "damage" the ears (unless, of course, it is over the OSHA levels that will damage the normal person’s ear).
The third essential factor of recovery is that all “control” of noise must be in the hands of the patient. The patient must have the confidence that they can control the level of incoming noise. TRT uses either pink or white noise machines to create a constant level of tolerable sound to the patient. This can be agonizingly low (imperceptible) at the beginning. Brookestone makes an excellent “sound machine”. This has a volume control that can easily be adjusted by the patient.
A fourth key principle is that all sound associations need to be “positive”. This can involve listening to favorite music or recordings of sections of the Philadelphia Phillies games (of whom my daughter is a great fan).
These are the bare bones of the more elaborate but relatively simple and direct process known as TRT. Further information about TRT is available on the internet, or preferably from an audiologist who knows how to guide it.
Please be aware of the possibility of functional thiamine deficiency, low functioning magnesium and/or B6, and sleep deprivation issues.