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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #1 
For those with extreme ear pain &/or limited LDL's despite having worked for a long time with all recommended sound therapies, just an idea:

When I was in an earlier hyperacusis/tinnitus stage experiencing acute pain with sounds, my oto-neurologist prescribed Gabapentin (Neurontin).
This is in the anti-convulsant class, which limits nerve excitability.
He thought this might allow my ears a break from the effects of over-responding to sounds, especially my actual stapedial tendon (which might have been strained from too-forceful contractions of the stapedius, leading to such excruciating pain) & others.
But the nerve dampening effect would go to the whole auditory system...as well as (un-needfully) the whole body, I would assume.

There was a buffering quality while taking the Gabapentin.
I'm sure I could tolerate more in terms of sound.

One neurologist I talked to feels that the nerve easing effects might have actually provided some protection from damage.
Not sure what the medical concensus would be on this - but I can see the logic.

When I stopped the Gabapentin 3 months later,
I was past the extreme pain phase, possibly also due to physical healing of the eardrum-area tendons.

My situation as with all of ours was unique..not everyone has torn ear tendons.

But I do know of one other person from this board who feels anti-convulsants help enormously with that individual's sound tolerances.

I stopped Gabapentin because I'm wary of pharmaceuticals in general & in extremely rare cases, Gabapentin is liked with tinnitus, but I seemed to have had no problems with it (it is considered one of the most problem-free of such meds, although some report problems of course.)

There is a 'pure GABA' - without the chemical changes put into pharmacuticals - made by the Thorne Company and at least one other.
Still, a doc, even if a Natropath, has to order it.

Not sure if 'pure Gaba' would be different in terms of any possible side effects but I'd look into it if I would go back on a GABA medicine.

Sometimes I wonder...since I'm now much improved...would a form of GABA take me on the leap to 'normal' abilities now.

For those with hyperacusis who have reached a ceiling with sound tolerances after dilligently doing all recommended sound therapies, GABA or another anti-convulsant might be worth asking your ENT &/or oto-neurologist about - for your INDIVIDUAL circumstance.

I know many docs think of valium first...from a different class of drugs.

Just a thought on the anti-convulsants.

Debbie

PS I was told that 900mg, a low-moderate dose, would be a sufficient trial.
I worked up from one 100mg capsule per day.
Then 100mg 2X/day,
then 100mg 3X/day,
then slowly added 100mg doses until reaching
300mg 3X/day.
Then I got the 300mg caps (it comes 100mg & 300mg)
to take 300mg 3X/day.
It is important to acclimate gradually whether going either
on the drug or off of such drugs.

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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #2 
P.S. I believe that somatic therapies, targeted chemistry (not necessarily pharmaceutical) & broadband + other sound therapies may ideally make up a trio of approaches to hyperacusis/tinnitus.

As I have mentioned in other threads, I think body(particularly central nervous system)/mind/spirit results of somatic therapies can be an indespensible leg of treatments.

But I would bet a lot that adding the '3 pronged' approach (adjusted & tailored to each individual) might significantly raise the ceiling on improvements that are seen to be possible with sound therapies alone.


Debbie

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gardennut

Registered: 07/15/09
Posts: 70
Reply with quote  #3 

Hi Debbie, I agree that sometimes any drug that relaxes one helps with tolerance to sound. It seems logical as a tranq of any kind dulls one's senses. I will use  Florazapan if I'm planning on going on say a day trip by bus or car just so I can handle the noise and have some enjoyment. As I use it on a very occasional basis, not more than once or twice a month, often less, I don't worry about becoming dependant on it., and it's worth it to me to be able to participate in life, with my friends and relatives.    Donna


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Donna Keddie
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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #4 
Hi Donna,

That is interesting.
I am no expert on pharmaceuticals.
I do know that some are prescribable for episodic use as you described, and others must be titrated & acclimated to over days or weeks and so are not safe to jar the body with off/on.

With Gabapentin, perhaps a doctor would ok quickly titrating up to a relatively small, 300 mg dose for episodic use if one a) already knows how it affects them and b) wanted to attend an event - perhaps a wedding or something? and experience less reactivity from it, then titrate down 1 mg at a time over a few days.




Then again...when possible, my thought is that the best use of any ear sensitivity 'buffering' drug would be to first choose one carefully with a doctor for the effects & safety sought,) then do somatic therapies during it's use.

The stress pattern which a carefully prescribed drug might interrupt might include messages to tighten muscles & the membranes they affect, thereby restricting fluids, etc. causing a cycle of stressed neurology.

Somatic therapies might take advantage of a break in the cycle of re-triggered neurological stress to reach some of it's physical mechanisms (which may or may not also have been triggered by or entertwine with emotional overload.)

With a calmer/clearer playing field - in someone whose neurology keeps getting re-triggered,) somatic therapies might be able to reach one step further and return the 'ball' of natural homeostasis (normalizing) abilities back to the body from 'team crisis.'
With it's natural healing abilities 'unfrozen' the body may then be able to run with the ball out of the cycle of stress itself, and back to a normally functioning (self healing) state.

Some elements behind symptoms may be 'healable' some others MAY not be...but perhaps many fewer than we think.

In either case, in my opinion, our experience of our maladies goes beyond the obvious symptoms to the subtle effects of freedom or restriction on the central nervous system.

The side-effects of treating imbalances from a wholistic standpoint are that we might become stronger & happier in dimensions of wellness beyond the symptoms which brought us to self-care.

Debbie

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saab1216

Registered: 08/10/09
Posts: 256
Reply with quote  #5 

With me it isnt so much the ear pain as it is a terrible sharp pain on the top of my head! So far,no pain killer in the world has stopped it.


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Paul H
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rjmckiernan

Registered: 04/11/08
Posts: 29
Reply with quote  #6 
Hi Debbiem
My daughter is 15, Autistic and is homebound (unable to attend school) because of her collapsed tolerance to sound. How I wish I could get more details from her, so we could help her, as her communication is good but far from what would be needed for the retraining therapy. Her neurologist did recently suggest an anticonvulsant to help with the anxiety of the Tinnitus. Side effects from drugs have caused both Diabetes and enuresis, so you can imagine my reluctance. Did you find a great deal of relief, as compared to before you took the drug? Do you feel that it didn't do any harm to your ears? any comments would be greatly appreciated!
Many Thanks, Joan-Katies' Mom 
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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #7 
Hi Joan,

It sounds like Katie might be extra sensitive to chemicals to have had those responses.
Have her doctors discussed why she may have responded the way she did?

There are ways - albeit a bit strange sounding - that some people 'test' the compatability of a substance before introducing it.

One is muscle testing; must be with someone 'blinded' to the substance being tested for, plus the patient must not know which is which either.
You can look up 'muscle testing' in the web.
Possibly "NEAT" is another method - there are practioners of this.
NEAT also is said to help people quickly drop allergies & sensitivities.

As for GABA, might want to look into a 'pure' form such as made by Thorne.
You can research that company and the differences between pharma (Gabapentin/Neurontin) & pure GABA.

Perhaps one is less likely to cause problems.
Although again Gabapentin is considered safer than most meds of it's class.
Yet of course some have had problems.

I don't think I personally had any problems.
The first days of adding doses have a weird slight lack of motor control feeling about them (like hands/fingers feeling slightly rubbery when trying to do fast things with dexterity).
And a little sense of loopiness.

But actually it otherwise had a relaxing, calming effect.
As for my ears, it seemed to help raise tolerances.

I was doing craniosacral therapy 1X/week during the course of Gabapentin too & I think that helped a lot also.
Hard to say how much of which helped most, it would be a matter of further trial.
But definitely pain & sound threshold relief during that period.
I was much better by the time I stopped Gabapentin 3 months later.

I did do muscle testing too beforehand & was told the natural GABA would be better for me.
If I did Gaba again I'd try that route.

Have you looked into Feldenkrais &/or cranial therapies also?
Both seem worthy of looks.
I have a thread with links in the very recent past (early August '09) if you are interested.
Good luck,
Would be interested to hear how Katie does.

Sincerely,

Debbie

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Dan

Registered: 01/31/09
Posts: 164
Reply with quote  #8 
From the prescribing information for Neurontin (gabapentin):

Quote:
Gabapentin is structurally related to the neurotransmitter GABA (gamma-aminobutyric acid) but it does not modify GABAA or GABAB radioligand binding, it is not converted metabolically into GABA or a GABA agonist, and it is not an inhibitor of GABA uptake or degradation.

In other words, while gabapentin is related to GABA, is has no effect on GABA receptors, it isn't converted into GABA or a substance which acts like GABA, nor does it affect how GABA is metabolized.  In fact, it is unclear exactly how gabapentin or pregabalin (Lyrica) works.

Regardless, GABA itself is not a substitute for gabapentin or pregabalin.

- Dan
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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #9 
Thanks Dan.

So the mechanisms of Gabapentin are unknown.

I wonder if it is known how 'natural' GABA works & what, compared with Gabapentin, that it tends to 'do' for people.

I know that Thorne is considered a good company, and only doctors can access their products.

Debbie

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Dan

Registered: 01/31/09
Posts: 164
Reply with quote  #10 
Endogenous GABA (at least in the brain) binds to GABA receptors and down-regulates neural excitability.  I doubt it is all that effective when ingested.

- Dan
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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #11 
That's interesting, Dan.
Thanks for posting this info.

I will also dig around a little to see what Dr's/patients who use GABA have to say & if there are any clinical studies.

Debbie

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LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #12 
Hi Debbie, (((( Smiles ))))

I have a few products from Thorne perscribed by an M.D plus some other companies for my kids they have autism.
Plus they do take and have taken for along time now Gamma Aminobutyric Acid with L-Theanine from the Allergy Research Group as it's HypoAllergenic and you know how that goes for Autism..
The gut the immune system allergic reactions..
Some worse then others with that.. 
My one child has taken a few mind altering medications before with very bad reactions from it.
It didn't make it better she became more hyper stiffening broke out in purple spots ect..
On a very low dose of and even cutting that in half.
She was diagnoised by another doctor specialist as being a heavy reactor to medication and with low brain reserve and there was a name for that condition..
We have to be carefull with her but recently she was on a herbal type medication as she's seeing another specialist this one is for Lyme not sure that she has it but they are running more tests from IGenex INc trying to break down what did show a positive for..
It's positive undetermined and inconclusive..
And they thought they should test her because we lived in a hill area with deers and something bit me in my yard and I got flu like symptoms from it..
This was before my T & H..
Not real long before but..
I was tested by my HMO long ago and we decided not to go that route again because there tests may not be good enough for her either.
But she was on this herbal medication perscribed for her and broke out in a body rash and we stopped and then we lessened the dose and she started breaking out again.
She is so sensitive to medications this is going to be a challenge.
But because of the possibility for me now I'm takeing Olive Leaf Extract and Grape Seed Complex for starts..
But yes only doctors can access their products.
But I order alot of products from Dr Becker too..
I think he's really good his products too.. 
I like to go as natural as possible and avoid the side effects one can get from medications.
I know alot about medications too as I've had a slight case of dystonia for years decades, like my TMJ as well..
Been down that road before in lots of different ways.
Autism, Dystonia, TMJ, Hyperacusis ect..
I've had alot to deal with over a big spread of time.
Lyme... Hmmm.. Not looking forward to that one we shall see..
We all got our scars otherwise..
Life is pretty good...
I'm still here..... ((((( Smiles ))))))     
        
Quote:

I know that Thorne is considered a good company, and only doctors can access their products.


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Lynn
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gardennut

Registered: 07/15/09
Posts: 70
Reply with quote  #13 
Hi all , this discussion is getting interesting. I noticed one person mentioned her child's sensitivities to medications. I also have that, in fact before I developed tinnitus and hyperacusis I had many years of Chemical Sensitivities. I often wonder if the T and H are another symptom of that. I mentioned using Florazapan on an occasional basis. I can make do on a much lower dose than is normally prescribed, and the medication is O K for me. However I must be very careful with all medications as some give me various reactions including sometimes 'ear' symptoms. It's been a long process of trial and error to come up with what works for me.
 I also have tried many herbal and homeopathic remedies and again I tolerate some and not others. For help in sleeping I sometimes use herbal teas [ they are milder usually than other capsules etc.] I have found St John's Wort a good relaxant and also Passion Flower [ no it doesn't make me passionate it just puts me to sleep]    Ciao for now,   Donna

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Donna Keddie
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LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #14 
Hi Donna, (((( Smiles ))))

My child that is supersensitive to medications.
Was more noise loud sound sensitive hyper as my other child was more hypo.
She use to cover her ears with her hands and had other symptoms too.
The teacher at school made some comments about it long long ago.
But I believe so many things when it comes to this myself.
And in trying to do so many different things and my other child has improved so much she has been on the principle honor roll 8 quarters..
And is no longer hypo with hearing and has overcome so many different symptoms..
As autism is a symptom of something gone wrong on a spectrum.
Of harm..
Thats what I truely believe so do others..
I'm so out of the box on this but had to be so to try to figure this thing out..
How to fix it somehow.
Their auditory problems have been improved big time..
Trying to now to heal fix my other childs bowels gut ect..
I think somehow that will be the key to a bigger improvement.
As it was for my other child in getting more better..
This one is more of a challenge though there has been some improvements overtime but this is a harder case..
But so worth it to try to help her improve somehow.. (((( Smiles ))))   

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Lynn
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Nemi

Registered: 02/16/09
Posts: 128
Reply with quote  #15 
Hi Debbie
Just going back on this older posts regarding natural gaba.  I am interested in ordering it online thru a company called Vitacost....  do you think that this is the same ''medication'' that you were told to try (you mentioned that a prescription is normally needed)?  I see it sold in 750mg and 1000mg...  ohh I also see Gaba calm, that looks good too (with N-Acetyl-L-Cysteine -Acetyl L-Tyrosine)!
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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #16 
Hi Nemi,

I regret the lag time between your post & this reply.
Feel free anyone to e-mail me if I don't reply to a post.
My PM account is full & will not take further activity.
I haven't been able to delete the old messages, will try from a different computer system at some point.

1st, I would suggest of course investigating whether any GABA products are safe during breast feeding.
This is a redundant comment as I'm sure you already planned to do so.

2nd. Since my last inputs in this thread,
yet another medical professional - a reputable
local TMD (tempero-mandibular joint dysfunction) dentist - recommended GABA products.
He did not think I have TMD
but believes as I have from the beginning that a major complication of my original sound-initiated ear trouble is musculoskeletal.
I strongly think involuntary musculoskeletal & cranio/sacral responses to auditory traumas of many kinds (whether initiated by a sound, chemical input, immune response to a pathogen (germ), a hormone, or whatever,
are often at cause of symptoms reported on this board.

Gaba can be one tool in interceding in excitatory/constrictive muscle/tissue responses, by calming the nerve reflexes.
The TMD dentist said his 1st choice in a GABA product would actually be a liquid tincture, a natural/pure one, available at various holistic stores.
The natural (powdered form) GABA I tried for a short time while returning to louder daily actitivites in my life sometime after this above thread seemed to work a bit too.
It was much different & subtler than the Gabapentin.
He thought the liquid would be much more effective & healthfully superior to the pharmacutical Gabapentin.
I have not yet looked into natural liquid Gaba brands.
If the liquid is not sufficiently effective, he said to then switch to 300 mg Gabapentin, divided into 3/100 mg doses/day.
I'm not sure if the two could be taken concurrently, the medical concensus I've heard is that there are few conflicting substances with Gabapentin, it is unusually safe in that way for a drug.

But I would wean off one, use a few days lag time (the natural stuff lingers more briefly in the system than the Gabapentin) then start the 100 mg Gabapentin, slowly increasing to the full 100 mg 3/day
Just to be safe about any cross reactivity until/unless more info on this is gathered from a knowledgeable source.
300 mg is 1/3 of the ultimate, and relatively moderate Gabapentin dose I was previously taking.
It is a low dose.

If you or anyone does due dilligance & tries the liquid GABA, please let us know what symptoms you were dealing with & add your experience with this substance to this thread.
P.S. Gaba is considered by docs to be safer than asperin, and products like Gabapentin are very widely prescribed.
Even my osteopathic/holistic practitioner felt it could be a great compliment to our work, and as I said above, the TMD dentist, who believes in holistic alternatives, also widely prescribes it while trying to help people relax the muscles affecting their jaws.
However, there are some who claim & seem to have had nervous system reactions to the pharma drug Gabapentin.
Any substance, "even" (and in my opinion often) a regularly taken vitamin, food additive, and many other 'normal' everyday things can be harmful to a given individual, given a certain genetic makeup.
When we can most obviously control for it, such as when trying a supplement or med,
always best to do due dilligence with own research, professional advice where indicated,
+ start gradually, observing responses along the way, and during a slow taper off later as well.

Debbie

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Nemi

Registered: 02/16/09
Posts: 128
Reply with quote  #17 
Hi Debbie, 
Thanks for your reply and ideas.  I am really excited about trying GABA, and I will wait until I finish breastfeeding (very soon).  I will order them and get back to the message board with how they worked for me.
Also, when you said:
I strongly think involuntary musculoskeletal & cranio/sacral responses to auditory traumas of many kinds (whether initiated by a sound, chemical input, immune response to a pathogen (germ), a hormone, or whatever, 
are often at cause of symptoms reported on this board.
It's funny I was really thinking the same thing, actually feeling tension in neck and having headaches all the time.  I would like to go back to see an osteopath (a different one haha) and see what can be done. 

all the best 

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autisticaplanet

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Registered: 10/19/09
Posts: 21
Reply with quote  #18 
I wonder if some form of GABA would work for my severe hyperacusis enough to work with a phobia specialist? We are all out of answers now, as all interventions have failed. I am reduced to existing inside my house with the windows and doors shut. My mother wrote a letter, which I typed and posted. She is at her wits end, too.
-autisticaplanet



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aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #19 
Hi AP,

You mention many things in previous posts.
Some people have some different symptoms with their hyperacusis, and it may help to get an idea of what yours really are.Can you please tell us what  symptoms you notice, or experience from hyperacusis?

Also has this gotten worse for you recently? And if so is there any reason you can think of that may have happened? Such as exposure to loud sound or anything that has changed, compared to when you were doing better (if you had been doing better previously)

I know very little about the medication or supplement you are asking about, or other medication  for that matter - but
Something to consider with any medications, and / or supplements is that they can interact with other medication, in ways that are important to know about and be aware of - and the same is true for nutritional supplements, they can sometimes interact with medication or have an effect on conditions that is very important to be aware of.

I have read many of your posts and hope you find some ways forward in dealing with these challenges that will be very helpful to you.

Wishing you much better days, and much improvement.
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TenTanToes

Avatar / Picture

Registered: 04/21/10
Posts: 1
Reply with quote  #20 

Quote:
Originally Posted by Debbie
For those with extreme ear pain &/or limited LDL's despite having worked for a long time with all recommended sound therapies, just an idea:

When I was in an earlier hyperacusis/tinnitus stage experiencing acute pain with sounds, my oto-neurologist prescribed Gabapentin (Neurontin).
This is in the anti-convulsant class, which limits nerve excitability.
He thought this might allow my ears a break from the effects of over-responding to sounds, especially my actual stapedial tendon (which might have been strained from too-forceful contractions of the stapedius, leading to such excruciating pain) & others.
But the nerve dampening effect would go to the whole auditory system...as well as (un-needfully) the whole body, I would assume.

There was a buffering quality while taking the Gabapentin.
I'm sure I could tolerate more in terms of sound.

One neurologist I talked to feels that the nerve easing effects might have actually provided some protection from damage.
Not sure what the medical concensus would be on this - but I can see the logic.

When I stopped the Gabapentin 3 months later,
I was past the extreme pain phase, possibly also due to physical healing of the eardrum-area tendons.

My situation as with all of ours was unique..not everyone has torn ear tendons.

But I do know of one other person from this board who feels anti-convulsants help enormously with that individual's sound tolerances.

I stopped Gabapentin because I'm wary of pharmaceuticals in general & in extremely rare cases, Gabapentin is liked with tinnitus, but I seemed to have had no problems with it (it is considered one of the most problem-free of such meds, although some report problems of course.)

There is a 'pure GABA' - without the chemical changes put into pharmacuticals - made by the Thorne Company and at least one other.
Still, a doc, even if a Natropath, has to order it.

Not sure if 'pure Gaba' would be different in terms of any possible side effects but I'd look into it if I would go back on a GABA medicine.

Sometimes I wonder...since I'm now much improved...would a form of GABA take me on the leap to 'normal' abilities now.

For those with hyperacusis who have reached a ceiling with sound tolerances after dilligently doing all recommended sound therapies, GABA or another anti-convulsant might be worth asking your ENT &/or oto-neurologist about - for your INDIVIDUAL circumstance.

I know many docs think of valium first...from a different class of drugs.

Just a thought on the anti-convulsants.

Debbie

PS I was told that 900mg, a low-moderate dose, would be a sufficient trial.
I worked up from one 100mg capsule per day.
Then 100mg 2X/day,
then 100mg 3X/day,
then slowly added 100mg doses until reaching
300mg 3X/day.
Then I got the 300mg caps (it comes 100mg & 300mg)
to take 300mg 3X/day.
It is important to acclimate gradually whether going either
on the drug or off of such drugs.

Hi Debbie and all reading,

I have had cervical dystonia and taken-- it was definitely an off label use for it then-- Neurontin/gabapentin for over 13 years.  It, along with Klonapin (a cousin to Valium, and both do work as anticonvulsant. In GB, Valium is the first thing one is given for dystonia.  In the US, Klonopin is the first tried.) Oh, also took baclofen before and in addition to the others, but don't like to take that much stuff...weaned myself off the Baclofen quickly, but the others cannot reduce dosage without feeling horrible again.

Anyway, I have severe hearing loss, inability to tell words apart easily, and have had sound sensitivity since I was a toddler or earlier...worsening to the maddening point after a plane ride/pressure build up in one ear. I'm 52. I read many cases here worse by far, and also different, from mine.  My own voice hurts me, have to cough 'quietly' captioning only on TV, ear plugs when drying my hair, etc. 

I would hate to think, since I take Neurontin already..how bad my hyperacusis might be without taking it. Or, if it prevents from being worse (worse??). Just like a few other pains show up if I am late on my dose of it.  

My dystonia and the crippling pain it caused has been very very successfully treated almost immediately with first capsule, and after many other things did not or made it worse or me sick! 

It is very interesting reading about the help you get from it in your post here, and so glad you wrote.  Perhaps a google search by someone with dystonia (twisted neck) who has not had a doctor that knows what they have or knows to let them try gabapentin will find this.  
And those that have our mutual sound problem will be helped by it.

Blessings,

P.S. My audiologist gave me boxes of MaxGXL for me to take, chronicle my hearing and other feelings if any, and just started it yesterday.  The reading on-line of the ingredients in it IS encouraging...I see him next week (this is not costing me anything and he ASKED me if I would do it!) for detailed testing and then will have an appt. with him and an MD specialist at the hospital.  I am sort of an unofficial guinea pig, and quite glad to do it.  I had NO hope of improvement, but he is telling me not to give up. If you keep in touch, I will let you know if it is helping, and in the meanwhile you can read about the supplements on the website


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pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #21 
dear debbie
hi there,
i was wondering if you are currently taking liquid gaba?
if so how much and where does one get this - assuming it is a good thing to try.
your opinion?
warmly,
pattiluv

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