Whatever it may be for you. What are your releases from TN?

1

Kind of an off non direct TN topic but I am curious of others things that make there day maybe just a little better. Pain has kept me in the dark of negativity and as I sit here feeling quite good listening to my favorite music(heavy metal, not everyones cup of tea, but it's mine).

Of course my daughter is my number one purpose for keeping on dealing with this. Being with her brings out the best in me, even when I feel bad. But as for her. That is a given and could be written about for pages but for the sake of keeping this somewhat short this is just a known fact.

Music is a huge personal therapy for me. The right song can turn my day around. If I'm home it's usually constantly on. I have mellower tastes too, as well as a cheesy love of 80's music. It's by no means a cure all but a great distractor and gets creativity and things running through me and that always makes me feel better.

And while you would think this would be the most terrible thing to go out and do I never feel more free than when I'm at a concert. I've probably been to over 500 in this lifetime. I'm always looking forward to shows. I love being down on the floor, getting sweaty and being in the mix of craziness. It's the greatest release I get without any meds or any TN garbage. I leave drenched, drained, and feeling great. Better than any drug can make me feel. I guess I'm passionate about it and that probably helps a lot. Haven't been to one in a while and as funny as this is the next show I'm seeing is Huey Lewis and the News(I don't care what anyone says, they rule). A good time band and that is exactly what is needed right now.

Acting and doing theater is another but that one is a little tougher to do and maintain, maybe one a year if I'm lucky. But with 2 months of rehearsals and a month of run it's another thing that keeps you busy and when it is possible to keep and stay busy it seems easier to manage living with TN. This is a much harder one to accomplish though. I pretty much have to learn to ignore the pain as much as possible as once you're in. You're needed and depended on and maybe that makes it easier, having a purpose.

I realize I've posted a lot of stuff on here and not a lot of it is positive. In parts but not as a whole so I just wanted to throw out a subject that will hopefully get some people thinking about the things they love and forget TN for a few minutes.

Sorry if this is a stupid off topic but it was on my mind and am just kind of curious of what makes others tick. I only have here as I know no one I can talk to face to face who has it so curiosity picks at me. Hope you all don't mind.

2

I discovered, purely by accident, that smoking clove cigarettes help. I don't even smoke, but tried one, got some relief. Tried again, helped again. Did some research, turns out clove oil has anesthetic properties. I try not to use them often, because they are half nicotine, and a smoking habit is the last thing I need to add, but it's something to add to the arsenal.

I have a friend who swears by an asian tea called Kratom. He's sending me some to try, I will let you all know.

I also find that when I can eat, not much is better than a good comfort food - I am particularly fond of any ice cream with cherries or raspberries and chocolate, but ymmv :) (I keep my weight down by the fact that chewing can be a trigger, so I sometimes go days without eating).

Playing my guitar, reading, writing, drawing, all help. I've sketched my pain on more than one occasion, it works much better than words in trying to explain what this is like. Also wrote a few poems about it. Having people understand, even a little, helps.

And it's not a stupid topic, it's a great topic! I look forward to reading more responses.

1 Like
3

Clove cigarettes? Really? I used to smoke those a long time ago. That is interesting.


Matthew Tabb said:

Ah, a musician too. I forgot to add that in on mine. Would've hammered the music love home a little more. I play bass and drums mainly but can work a guitar enough to write songs, just not solo. And what I write is a varied as what I listen too. Good stuff. Thanks for sharing.

Jan Luchinsky Hensley said:

I discovered, purely by accident, that smoking clove cigarettes help. I don't even smoke, but tried one, got some relief. Tried again, helped again. Did some research, turns out clove oil has anesthetic properties. I try not to use them often, because they are half nicotine, and a smoking habit is the last thing I need to add, but it's something to add to the arsenal.

I have a friend who swears by an asian tea called Kratom. He's sending me some to try, I will let you all know.

I also find that when I can eat, not much is better than a good comfort food - I am particularly fond of any ice cream with cherries or raspberries and chocolate, but ymmv :) (I keep my weight down by the fact that chewing can be a trigger, so I sometimes go days without eating).

Playing my guitar, reading, writing, drawing, all help. I've sketched my pain on more than one occasion, it works much better than words in trying to explain what this is like. Also wrote a few poems about it. Having people understand, even a little, helps.

And it's not a stupid topic, it's a great topic! I look forward to reading more responses.

4

Hi Matthew,

The reason I will never give up is my 3 grandsons. To get relief I sit quietly reading a book, while holding a heated pad to my face.

I listen quietly to the radio, or try to watch grand designs on tv.

I find just being quiet helps.

I love swimming, but the water has to be very warm, or my tn will start, along with my other aches and pains.

Being able to write it down on this site also helps. People on her are alway prepared to help you.

I seem to have lost you on face book, think something went wrong with the site.

Hope you are ok

Margaret.

1 Like
5

I sing in our local choir and we put on a few shows each year. I love that. For 2 hours a week I forget my job stress, forget my home life stress, forget the stress of being super-mom and try my best to forget the bad day or week I had with TN or my migraines. Lately, the migraines get in the way, but they lessen when I am there and if I am fighting one I sit in the back and remind myself that this is MY time.

Unfortunately at the last concert, I had a TN attack about 1/3 way through. It started mild and got worse as the concert went on. I won't let that stop me and I am hoping I can get on some new meds so I don't have to back out of my solo next year.

Oh yeah - Huey rocks!

6

My release is for sure the casinos and slot machines in Tunica, Ms. Unless I am in a total meltdown…they take all my cares away…they take my money away too…lol

7

my kids - human (x1) and fur babies (x2) as they give you unconditional love, cuddles and wet kisses!

Also swimming has helped me lately - just the ability to float and drown out the noises of the world and I find it relaxes and refreshens me all over.

8

Hi Matthew,

I have a daughter and 4 grandkids living with me. Sometimes, they are a great distraction. Others, not so much.

I love to read a good novel. Seems to take my mind somewhere other than TN.

I am in a writing group. That seems to be able to help me write on paper what I feel. Sometimes, I start on a negative topic, then realize I'm going to share it and start over, ending with something completely different. However, on a day that I can't drive to group, I really miss it.

Chocolate! One of the few luxuries that seem to melt in my mouth, no matter how much pain I'm in!

Jackie

9

Matthew,

I am a dance, so I know how hard the crazy schedule can be on your body. I have actually had to stop dancing as much. I wanted to continue dancing professio nally, but my body would not allow it. I have this dream of being a Rockette..I have done summer workshops and shows with them so I have a taste of my dream. That keeps me going. Not to sound silly, but dreaming and hoping can go a long way!!

My boyfriend,mom, and sister are the ones who keep me here. I could not ask for more from them. I think that we need to lean on the few that we do have!

Journaling helps me unwind as well. Do you write music? With your love of music and experience with TN I think that would be a great idea. I only know of one other sound specifically about TN, " I need a miracle" by Heather Marcott. Her husband has TN.

At times exercise helps, but at times exercise hurts. Just another suggestion.

Best wishes for a pain free day.

10

Hi Matthew,

Firstly, my little 15 month daughter is the reason i keep going and also keeps me from thinking about TN whenever possible. She's keeps me on my feet most of the day. lol

I also enjoy reading, swimming, watching films and walking (whenever its not too cold). These things provide me with a release from TN sometimes.

Take care,

Una

11

Hi Matthew,

In response to your question, i enjoy the more recent films. Love lord of the rings, slumdog millionaire,shawshank redemption, twilight etc.

Also love the girlie films such as pretty woman, mama mia, the break up and love actually. Only recently got into watching films as im spending more time in the house. :)

Una

12

Did I see you talking about MOVIES? Let me name just a few of my favs....


Um, here we go....

Uncle Buck

Grumpy Old Men

Grumpier Old Men

Tommy Boy

The Great Outdoors

The Benchwarmers

Fletch

Airplane

Big Daddy

Smokey & The Bandit

Ace Ventura When Nature Calls

Step Brothers

The Hangover

The Ringer

Madagascar & Madagascar II

Open Season & Open Season II

National Lampoons Vacation
National Lampoons Christmas Vacation

(You GOTTA LOVE Chevy Chase!)

Pretty Much Love comedies, especially ones with "adult humor"! I'm a sucker for a kids movie, with adult humor! If I can watch a movie with my kids, and have it be just as funny for me as it is for them, I'm sold!!!

13

Hi Matthew,

Let me say first up - fantastic topic! :-) I started with TN in my teens and never knew what it was, it was never this bad then - but by 30 years of age it had changed my life forever. I'm 37 now, on a disability pension and living every day in my house, excursions are few and far between.

I don't have any children, nor do I have a partner. I live by myself as the only human anyway, I have four dogs, as of today 2 cats (am picking up my 2nd cat today, it was found abandoned in a house by it's former owners) about 30 chickens and 2 ducks. I live on 3 acres of land :-)

I spend too much of my time on the computer, it has become my number 1 distraction - but my best distractions are exercising or training my dogs, well the younger 2 anyway, the older dogs I've also had since pups and need no further training, they are 12 and 10 years now. The other two are 5 years old with the youngest just 8 months. I used to train and instruct dogs in competitive Agility, now I just train at home when I am able and compete much more rarely - but my dogs love their training time, they get excited and happy so this makes me happy.

When I cannot train, I too love listening to music - I like so many kinds of music, but for me heavy metal is not one of them :-) I read when I can, but sometimes the effort of reading is impossible. I used to read constantly, but find now my concentration and focus slide too much to get very far and the pain seems to dim my already bad eyesight further.

Caring for the land I live on and the animals takes my time also, and I enjoy nothing more than the physical labour I use to maintain my property.

I have small weights and an exercise bike at home that I use for light training of myself - I need to do more as my ability to endure much exercise is also greatly reduced, I suffer fatigue so badly this past year and will sleep 12 hours at a time - ironic as last year I was an insomniac as some here may remember.. I also use the exercise programs on the Wii console my mother bought me, to try and encourage me to exercise more and indoors stuff when the weather was bad outside. I walk my dogs, one at a time - this makes me walk four times as far but any and all exercise will make me sleepy even more - so it's a matter of compromise so I don't sleep the whole day away.

I have built up an extensive DVD collection - excellent distractions - movies, and tv series I enjoy - I'm a big sci fi fan and absolutely love my 10 year series of Stargate SG-1, plus the 3 movies of the Stargate Franchise. I currently just finished watching the fourth series "again" of my Farscape collection and today will start watching the movie that finalised the series "Farscape: Peacekeeper Wars". I've lost count now how many times I've watched the SG-1 and Farscape collections, over & over & over! Also, Prison Break, Supernatural, Harry Potter collection (OK, yes I am a big kid at heart) and many many more...

Movies - Umm, well if I start listing my movie collection here we'll be here all day and half the night :-) but some recently released blockbuster movies I LOVE <3 to bits would be: Avatar, Shutter Island, Clash of the Titans, Sherlock Holmes, Tron, Prince of persia & The Tourist just to name a few.

I do volunteer work for pet rescue organisations and am also a registered pet foster carer. All but one of my pets is adopted / rescued.

This Sunday I'm helping my friend with her fundraiser for the victims of the Queensland (Australia) floods.

In March I'm shaving my head to raise sponsorship money for the Leukaemia Foundations event "The Worlds Greatest Shave"

And that's me or part of me to some extent :-) I have already written too much, lol - we'll be here too long! Thanks for reading this much.

Thanks again for the topic! It's kind of a release. And Journalling as someone else has said is great. For some reason it's so much easier to write than to speak and even when i am able to speak, the language skills are not there anymore. Brain fog is my typical name for it, names of places, things, people etc., all gone - even common everyplace names elude my spoken language skills. When I am on meds or even when I was off meds for 6 months...

Cheers everyone - wishing you all pain free days!

Kerry xx

14

Thank you, This is good. Some times we can lose focus on the good things.

Love you, Rose

15

This might be a boring reply, but moist heat, hot baths, humming (and the odd looks I get from those who pass me in the store are often entertaining), meditating, and Lamaze breathing…

16

Hi there,

There are some great ideas here. I use pottery as a release. I cannot throw on a wheel as my hands suddenly lose strength from my medications, but I do hand building. And if I mess up, I just start over. . its just clay. But I can get lost in it. And occaisionally, I make something I am truly proud of. Other than that, movies. But usually I fall asleep while watching them.

Debbie

17

Hi I am Gina and I love Music and Children well if you read any of my post you saw I have a few children LOL! Here we love music if it playing the keyboard DH or his guitar or listening to some good old school. I find music to soothes my mind and the pain from this TN with out meds. I can listen to a story my eight old would read to me or my ten year old. I think anything that can make you smile with out it hurting is Great!!

When I am not drain from fighting off my attacks I love to work out all my children play some type of sport. Me and my Husband have always worked out. If it a good game of basketball or lifting in the gym or some type of cardio.

So this post I think is great one!!

18

MMMMM, Chocolate. Life doesn't get any better than a great piece of chocolate!


Jackie M said:

Hi Matthew,

I have a daughter and 4 grandkids living with me. Sometimes, they are a great distraction. Others, not so much.

I love to read a good novel. Seems to take my mind somewhere other than TN.

I am in a writing group. That seems to be able to help me write on paper what I feel. Sometimes, I start on a negative topic, then realize I'm going to share it and start over, ending with something completely different. However, on a day that I can't drive to group, I really miss it.

Chocolate! One of the few luxuries that seem to melt in my mouth, no matter how much pain I'm in!

Jackie

19

Hi Jan,

I have been using Kratom tea for a couple of weeks now, and it really does help. Especially when I get TN pain that is persistent and morphs into a migraine. I have been on many different meds, most didn't help, I'm severely allergic to Tegretol and had a nasty reaction to Topamax. I finally had MVD surgery last June which relieved the pain for about 3 months. I don't have as many attacks as I used to, but they have become as painful as they were before surgery, unfortunately.

I heard about Kratom from Lance Armstrong's "Livestrong" website, decided to try it since it seems to have been used for centuries without harm. It is a leaf from a tropical Asian tree, mostly used by peasants who chew the leaves to enhance their ability to work long, hard hours. In lower doses, it is an effective pain reliever and imparts a pleasant feeling of well-being. I put a teaspoon or so in a cup of green tea, and in 20 minutes or so I feel a sense of relaxation, pain reduction and my mind seems to turn to happier thoughts. The pleasant feeling lasts about 4 hours, I haven't noticed any ill-effects. Chemically, kratom works on the same brain cell receptors as opiates, and the sensation is similar. However, it doesn't seem to cause dependence as opiates. Probably because the effects are much milder, and higher doses cause sleepiness but not the "high" one would get from opiates. It does give you a bit of a buzz, and I do not drive after using it, but it doesn't mess with my head the way some of the prescriptions I've been given have.

I wish the medical community would investigate this herb more thoroughly. It absolutely has helped my pain, and I haven't experienced any ill-effects. I'm sure it is different for everybody. I don't think drug companies would be interested because they can't patent it since it is an herb, and they can't make big bucks since it literally grows on trees.

That's great that you have creative outlets to help you cope. I have sketched my pain too, kind of like putting a "face" to the monster that plagues us! Maybe we should start a TN art gallery on here! ~Suzanne~

Jan Luchinsky Hensley said:

I discovered, purely by accident, that smoking clove cigarettes help. I don't even smoke, but tried one, got some relief. Tried again, helped again. Did some research, turns out clove oil has anesthetic properties. I try not to use them often, because they are half nicotine, and a smoking habit is the last thing I need to add, but it's something to add to the arsenal.

I have a friend who swears by an asian tea called Kratom. He's sending me some to try, I will let you all know.

I also find that when I can eat, not much is better than a good comfort food - I am particularly fond of any ice cream with cherries or raspberries and chocolate, but ymmv :) (I keep my weight down by the fact that chewing can be a trigger, so I sometimes go days without eating).

Playing my guitar, reading, writing, drawing, all help. I've sketched my pain on more than one occasion, it works much better than words in trying to explain what this is like. Also wrote a few poems about it. Having people understand, even a little, helps.

And it's not a stupid topic, it's a great topic! I look forward to reading more responses.

20

My attcks are not that often, but when I have them, I have to admit... unlike everyone on here... I completely loose it. My attacks are extremely violent. The pain is so intense, I literally want to pull my teeth (luckily my husband stops me, not sure I have the guts to do it anyways;)

I can't talk at all. I scream and cry from pain, but it makes it worse, so inbetween screaming and crying I try to sit with a warm sweater in my face, as I lay crying silently.

I can't move around or it get's worse. I can't communicate with my husband with out talking, so it's difficult to do so, and have him feel that he is being supportive and loving during an attack. He wants to pull my hair from my face, but touching me, makes me scream louder. And I feel bad he has to see me like this.

I normally kick the corners of the walls with my legs (shins) to divert pain... but if my husband see me, he throws a pillow inbetween them.

I cannot understand how I am so differnt in this aspect as others. :(

I have felt such a personal connection with a lot of people on here.... but wondering if ANYONE goes through this like I do, or if I am just a BIG BABY?

Once I get the medication that works for me (right now it's tegretol), it takes about 45 minutes to an hour to kick in and then.... almost in a whisper.... gone.

I am fine, can smile at my husband, but reluctent to even brush my teeth for several hours in fear that it will come immediately right back.

Am I alone here?

I hope someone will post something about how they are DURING their attacks. (P.S. I also have had facial swelling after an attack along with drooping. You can see my photos I posted... warning, I do not look good. lol)