losing my minds ability to think

[candie]

folks, my mother is typing this for me. I need your help right now.I am literally losing my mind, thought process. memory, concentration and the ability to think straight and clear. I need a way to block my inner ear canal now. I wear rifle range headphones but they do not block the inner ear canal and close up sounds. I suffer from severe ME and am totally bedridden for a year. I live in darkness and now I have hyperacusis. It is so bad that I cant even stand to listen to a pen writing on paper. If anyone has any ideas I could sure use your help. I do not have a doctor to help me as none will come to my house and I can not travel. Thank you so much , any advice is welcome

 

[meandthecat]

candie my heart goes out to you. I can't offer advice as it was not so bad for me but I hear you.

 

[candie]

thank you, im candie, the mother, my son, Billy is sick, hes only 26

 

[Raindrop]

Candie and Billie,
I am so glad you managed to reach out to this group. I am greatly moved by how difficult this must be.
I will immediately get in contact with someone who is very familiar with severe
ME cases such as yours. In the meantime, I would recommend going to the "Hummingbirds Foundation for ME"
which is a world-wide education, support and information group which addresses the needs of severe ME, if you
haven't already. Posting there might be a start and you will find they have many really excellent links and resources.
I really feel for you so much, and I will be trying to help with other future ideas. Although Billie is at the far end
of the ME severity scale right now, there IS hope and he is NOT alone. We are WITH you!

 

[lansbergen]

I think the nerves are inflamed/infected. Probably other cranial nerves are too.

You could try Benzydaminehydrochloride cream in and around the ear at night and at other times when it is quit. It might help a bit.

 

[minkeygirl]

I know someone else who also has this problem. If she gets too much stimulation she has "seizures". Hers is the last link I posted. I know her and she's really cool. Always has a positive attitude.

There are several groups on Facebook for people with Severe ME. I don't know much about them but here's one. Also a blog from a guy on another forum who is a carer for someone with severe ME

https://www.facebook.com/groups/severemechatandsupport/

http://www.carersfight.blogspot.co.uk

https://www.facebook.com/m.e.myselfandwhy.contact

 

[Valentijn]

candie
I don't think there's any clear answers for what causes hypersensitivity or what can help with it. But one possibility is inflammation, as mentioned above. Fish oil (with a good amount of DHA and EPA omega 3) can reduce chronic inflammation. 2-3 grams of fish oil per day is the only thing that touches my otherwise constant headache.

Another possibility is an excess of glutamate, which can create the sensation of the brain being "wired"/overstimulated or on fire, even when exhausted. N-acetylcysteine (NAC) and/or glycine can help to bring that down.

If testing is an option, it might help to check for neurotransmitter levels: glutamate, GABA, epinephrine, norepinephrine, dopamine, and serotonin. Those can be done via urine or blood.

 

[justy]

Hi Candie, i'm sorry i don't have any advice for you, beyond what has already been mentioned. Contacting groups that are specifically for people with very severe M.E may be your best bet. In the UK there is the 25% group

http://www.25megroup.org/home.html i am sure that even though you are in the states they may be able to help with specialist advice and support.

I am a woman with moderate/severe M,E, but also have a daughter who has been very ill with possible M.E and needed me to care for her (although she is much better now) so i can understand something of what you and your family are going through.

I mainly wanted to respond to ask you if you could give messages to Billie of hope and supprt from us (when he is able to have contact with you) Please do tell him that even though he feels alone i am thinking of him and holding him in my thoughts and wishing strongly for some improvements for him, even if they are small.

For me being improved enough to sit and talk with my children,watch a movie with them and play a board game with them was amazing after finding it too hard to hold a conversation or sit at the dinner table with my family.

Now i am able to cook for them, chat to my hearts content (mainly) and even though i still feel ill while i'm doing it it is great to be at the heart of my family again. I can also go out now once or twice a week for a couple of hours and use a wheelchair for 'walks'.

I also send my warmest wishes to you, his mother, i understand how hard it is to care for a sick child and how distressing it is to see your child so ill.

Take care,
Justy.x

 

[caledonia]

I had horrible hyperacusis from SSRI withdrawal syndrome. It was so bad that I could hear people mowing their lawns blocks away even with earplugs in. It was driving me crazy.

The one thing that helped me was Neuromedulla Complex from Professional Health Products. I believe I was only taking 1/2 of a pill as 1 whole pill was too sedating.

I also suggest earplugs as opposed to ear muffs. I get mine from the Earplug Superstore. My favs are E-A-R Classics. http://www.earplugstore.com/eclpvcfopln2.html

In general, do you feel wired, anxious, stressed or revved up?

 

[taniaaust1]

Hi, , I want to give you and Billie a message of hope.

I had severe ME to and bad noise sensitivity was one the symptoms I suffered (I used to wear ear plugs all the time at one point). Has he tried BOTH wearing good earplugs AT THE SAME TIME as wearing good ear muffs (I know ear plugs arent all that comfortable but if the noise is such an issue they can bring relief and one can get used to them some).

I couldnt handle my children speaking to me (I had much trouble speaking/understanding language anyway) and hence went to communicating in our own form of sign language. Sounds eg someone mowing the lawn neighbourhoods away would impact me so severly that I'd start shaking and completely overloaded my brain, good earplugs used at the same time as good earmuffs for me worked quite well thou didnt help at all if neighbours were playing music (the vibrations I could feel from the music and throu my walls caused brain overload too). I couldnt handle light or even touch (my young children couldnt hug me, sheets on my bed hurt me).

Anyway.. I'd like to let you and Billy know that I recovered from being that bad. About 4-5 years later, after being very severe where I needed to be almost completely cared for (couldnt get myself to a toilet) I did have a full remission for 2-3 years (I even ran a marathon in that time).. I did thou get a common virus and ended up with ME again due to not resting as Id had no issue with this illness for years didnt think I needed to rest from a normal virus, but Im nowhere near as bad as I once was.

When Billy gets down, remind him there is always hope.

best wishes to you both
ps (I got this illness when I was in my 20s).

 

[Snowdrop]

Hello Candie
I too am sorry to hear of how ill your son is. I only have the most general of advice.

If he's in pain or wants help sleeping a good way to use any meds he might be given is to 1) use a half dose at first, it may be enough as we're a sensitive lot 2) I mix things up to help relieve symptoms sometimes a pain reliever sometimes a muscle relaxant or combining them. This requires some careful thoughtful experimentation I've always been an underutilizer of meds.

Vitamin D3 is inexpensive and may help in general especially as Billie probably doesn't get much sun. You can take several at a time (6-10) without overdoing. I think several people here have done so.

Valentijn's suggestion of Omega 3 fish oil is another general suppl that won't harm but may help. I don't know anything about others except perhaps magnesium which has a calming effect on the nervous system. I have used New Roots Mg bisglycinate to good effect.
best regards,
Snowdrop

 

[Seven7]

Hello I wanted to tell you that I was as bad and wanted to give you some hope. My brain is back after Orhtostatic intolerance treatment and treating confections with antivirals. It has taken about 2 years of treatment to get me where I am and has been a long journey. Try to see a Good CFS specialist since they can help you faster, I tried by myself for 3 years and ended up in bed. Now Even though I am still sick, I hold a full time job and can lead a pretty normal life most of the time. Hang in there.

 

[Snowdrop]

I

Hello I wanted to tell you that I was as bad and wanted to give you some hope. My brain is back after Orhtostatic intolerance treatment and treating confections with antivirals. It has taken about 2 years of treatment to get me where I am and has been a long journey. Try to see a Good CFS specialist since they can help you faster, I tried by myself for 3 years and ended up in bed. Now Even though I am still sick, I hold a full time job and can lead a pretty normal life most of the time. Hang in there.

I think from the initial post that Billie cannot leave the house and is bedbound. Finding a specialist isn't an option.

 

[Hip]

The best supplements and drugs I have found that seem to reduce my hyperacusis are:

Amisulpride (drug) 25 to 50 mg daily (not on sale in the USA, but available from overseas pharmacies like this one).
Vinpocetine (supplement) 30 mg daily.
Piracetam (supplement) 1000 mg daily (aniracetam 1000 mg is a similar alternative).
Bacopa monnieri (herb) 3 grams daily.

As Valentijn says above, anti-inflammatory supplements may also help. I found N-acetyl-glucosamine 750 mg daily to have powerful anti-inflammatory benefits that kick in rapidly.

 

[Shell]

Candie - can't add more for you and Billy than what's been said here. I certainly recommend Hummingbirds though.
I'm glad you've joined us here. I hope you can feel supported.

 

[peggy-sue]

I found sublingual vitamin B12 stopped the agonising unbearablenss of trying to think - the feeling that my head was about to explode, that my brain was vacuum-sealed inside a pressure cooker and the heat turned up...

It has to be in the sublingual form. Solgar make an excellent one - and it is not expensive.

It is very highly unlikely to do any harm. It might help with the unbearableness of the hypercacusis, but I cannot make promises.

Each one of us can react in different ways to the same things.

I take a high dose of EPA fish oil, which does help me a lot.
(I have "proof" from the 3 month period I stopped and went badly downhill, which perked up again after starting again.)

During that period, I was only able to get hold of a make which contained DHA - and it did me absolutely no good whatsoever - I got far worse despite the small dose of EPA I was still getting from that make.
I won't be taking DHA again - and it is not recommended by Prof. Basant Puri.

But some, like Valentijn, do find it helps.

I hope you do find some good help, very soon.

 

[alex3619]

DHA has almost zero antiinflammatory effects. The antiinflammatory component of fish oil is EPA. DHA is needed for nerve repair though.

I hope you find the answers you are looking for, billie and candie.

 

[peggy-sue]

I started taking the EPA because I knew at least that that is what the body needs most, for making good, well-functioning cell and mitochondrial membranes.
I didn't know if it would help my ME, just felt that it would help me be the healthiest I could be with ME.

Billie and Candie - my very kindest good wishes for something helpful and good for you both.

 

[Raindrop]

Billie and Candie,
I have written to people I know who are familiar with some very serious cases of ME.
One friend wanted me to share the following, which one person wrote when having some of
the same difficulty with sound. Please note that the ingredient which she speaks
of which is in the cough surup is NOT to be taken if you are on an MAO Inhibitor type anti-depressant.
(Hopefully you will look into combining anything you try with any medications taken presently)
Here is what was written:

> SOMEONE WROTE THIS IN MARCH 2009
> this is from a friend of mine... note what she wrote about her hyperacusis going down from using Naturade Expec
>
> i have found something that seems to help *slightly* with my stimulation sensitivity. it's still horrible, but it was so much more horrible and some things have toned down slightly. the solution came from researcher martin pall, who i emailed with not long ago. some of you might know of him: dr. cheney is really interested in his theories and he has a pretty interesting paradigm around cfids and mcs.

anyway, he suggested the stim sensitivity had to do with NMDA hyperactivity, which i know is a factor for a lot of people who are chemically injured as pesticides and other chemicals injure the NMDA system in the brain. his antidote for this was an ingredient in cough syrup called dexmethomorphan (sp?) which is an NMDA antagonist.

i also read in dr. jay goldstein's book tuning the brain that guaifenessen, the ingredient in natural cough syrup that a lot of fibro people use, has a similar action as an NMDA antagonist (pall disagrees with this but goldstein is quite firm on it). so i began experimenting with both of them -- the chemical one is robitussen cough and the natural one is Naturade Expec. and i think they are helping with the stim. sensitivity.

definitely my hyperacusis and vibrational sensitivity have gone way down. for awhile if someone was walking outside of my house, just on the ground, the vibrations would feel so intense (on the second floor) i would feel like i was being violently shaken like a boat in rough waves and i would get super sick just from that. it got to a crazy level of intensity and sounds in the house like the hydronic heater making little clinking noises were deafeningly loud and i was wearing earplugs all the time.

those things are much better. i still get sick from people in the house/in my room but the cough syrups were what really made the difference. they also kind of mellow me out in general -- i'm mostly taking the natural kind, don't worry -- so i think they might help with sleep and might be worth trying for that.
>

 

[Raindrop]

Billie and Candie,
So sorry for this copying twice! I am thinking of you and hoping that you have the ability to make a
decision about what to choose to try. I am sure that with all of us suggesting so many things, that
it must be very difficult. My heart is with you and if you are able, please let us know how you are doing.