Sleep issues..... help!

[Esperanza]

Hi, I was wondering how people cope with any imsomnia issues that arise after symptoms become marked or from diagnosis?
It is not quite three weeks since I had my vertigo attack and then the sudden profound loss of hearing on my AN side - I have not had one full nights sleep since.  The noises in my head make it very difficult to relax and I don't seem to be able to get comfortable lying dowm any more. 
My balance is nigh on normal now and I want to get some normality back into my life but I don't see that happening when I am running half empty....  I don't want to go down the medication route.  I had no sleep issues before this and certainly the little tinnitus I had before was not a problem.  Not sure how I cope with this. 
How is it for other people - is what I am going through considered 'normal'...  Any suggestions/advice would be very welcome.

Thankyou (in desperation!)

[Larry]

Hi Esperanza,

Your issues are not uncommon. My wife (unrelated to AN's) went through a severe depression era when both her mother and brother died of unrelated cancers. She also had digestive issues, was wrongly diagnosed  and ended up not being able to eat. She got very thin and as a result, could not sleep either.

She went to numerous people about the sleep issue and got a lot of bad advice (hindsight is a wonderful thing). I can only pass onto you what worked for her. This may be very different for you.

She found that she had to keep busy during the day and stop her mind from thinking about not sleeping. She made sure that there was no deadline to get up in the morning (put pressure on when looking at the time in the middle of the night. She then got rid of a watch or clock by the bed. again, that puts pressure on you. Soothing music - well, jury is out on that one as to its benefits. when she lay in bed, if she couldn't doze off after around 20 minutes, she would get up and have a glass of water or tea and then try again. The longer you lie in bed not sleeping and worrying about it, the worse it got.

All of the above worked but i think what contributed equally as well was the cocktail of drugs that she was on (not on now) and talking to a shrink that specialises in that field.

Hope the above helps


Laz

[waypoint]

you have to stay up and push yourself to be active during the day. That why when you put your head down at the end of the day, you be too tired and will go right to sleep.

[Charlotte Lady]

I read an article recently about insomnia.  It was interesting.  One of the  things mentioned was selecting a wake up time and a bedtime and sticking to them, even if it makes you tired for teh first couple days.  They also recommended a nighttime relaxing ritual...for instance reading a couple pages in a book, watching a small amount of TV, drinking a small glass of milk.  That's supposed to give the body clues it's time to sleep.

My doctor told me some people find Tylenol helps them sleep, others used benadryl.  As for me, I prefer Tynlenol PM (Acetomenophen with benadryl) as my sleep aid. 

Donna

[HeadCase2]

"It is not quite three weeks since I had my vertigo attack and then the sudden profound loss of hearing on my AN side - I have not had one full nights sleep since...... I had no sleep issues before this...."

Esperanza,
  All of us here know what it's like to find out about having an AN, and the concern of finding a new symptom.  We worry about how that will affect our quality of life.  My non-professional quess is that you're having sleep issues because of stress, worrying about your health and what's next.  As you said, you had no sleep issues before finding these new symptoms three weeks ago.  Anything you can do to relieve stress may help.  Hopefully your stress level with decrease as time moves forward.  I think it usually does for AN patients, as we disover that AN is unlikely to do us in, and life is still pretty good -- especially good dark chocolate. 
Regards,
  Rob

[Sefra22]

I find that having a fan  on at night helps immensely. Even on the "low" setting, it drowns out noisy traffic, and helps to diminish the tinnitus.  After a while, the sound will help to signal "this is sleep time" .  I live in a cold climate, so I just make sure the fan is not blowing on me.
Lisa

[Samantha n Adrian]

I actually had the opposite effect from my AN.  I was constantly tired and would fall asleep very easily.  I could be on the couch talking to Sam and would fall asleep in mid sentence while she was talking to me.  She would just stare at me in amazement.  She also said I used to twitch a lot and snore heavily.  Both of which have stopped post op.

Adrian

[lori67]

Adrian,

Sam must be very understanding if she didn't clobber you for falling asleep while she was talking to you!   

Lori

[Samantha n Adrian]

She didn't get mad before, because I had a TUMOR (Arnold Schwarzenegger voice).  Its when I do it now, that she gets a little ticked off! 

 

[ppearl214]

She didn't get mad before, because I had a TUMOR (Arnold Schwarzenegger voice).  Its when I do it now, that she gets a little ticked off! 

 

use the old "well, brain tumors/treatments are known causes for extreme fatigue" excuse... works like a charm for me and my bloke!

[4cm in Pacific Northwest]

Esperanza,

The “insomnia thing� has come up a few times on the forum

I too started a link
http://anausa.org/forum/index.php?topic=5359.0

I can now tell you that I am now back to a more normal sleep pattern and I actually bought a new cappuccino espresso machine and thanks to Lorenzo (a treatment  success story) I am hooked on Peet’s coffee now (and still sleeping at night with that morning consumption – wow!).

There are a few things happening here...

Steroids
I read back on your other posts that you were on a steroid for a stint. Prednisone? This stuff stays in your system for a while (many of us had shots of mega steroids with surgery) and really messes up the sleep pattern.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html#side-effects
Some have nightmares – and our dear Adrian was found filmed (on a you tube clip) laughing his head of just after surgery. Steroids do mess with one’s brain.

Tinnitus
http://en.wikipedia.org/wiki/Tinnitus
Tinnitus caused by the AN can come in many forms (ranging from mild high pitch rings, to knocking, to an electrical shock sensation) - this can interrupt your sleep. Try getting some good soft ear plugs. Often tinnitus is related to input sound going into the good ear and ringing into the AN ear (my ear is dead but still rings when I am in a noisy environment).

Location (Brain Stem?)
My tumor was pushing on the brain stem (however I was 4 cm). The brainstem controls sleep. After surgery there was still lots of irritation where the tumor was and I had some dura fluid build up… so pressure and irritation at the brain stem was there after surgery. Now I am really improving and additionally sleeping better. Ask your physician as to where your tumor is located in relation to the brain stem. (Now remember these tumors do not grow into the brain – they just push up against it)
http://www.mayoclinic.com/health/central-sleep-apnea/DS00995/DSECTION=3


Stress
Finding out you have a brain tumor is freaky. I would wonder about any person who did not get a little stressed out about it. Try to power walk for at least 20 minutes a day. (Being in good health and fitness is important) and it is especially important for a patient to be strong and fit prior to treatment as this improves their chances of a good recovery)

The vicious caffeine cycle
"There is nothing like a lovely cup of ____ " ....for comfort during the winter and a stressful time. Try to watch your caffeine intake – particularly after the morning is over.

Know what you are experiencing has been experienced by other AN’ers. You are not alone.

Last May (when I found I had a tumor) I was in a state of shock. We actually indirectly found the tumor via a sleep clinic techy who implored me to see and ENT. August I was in trauma as I woke up after surgery: suddenly single sided deaf (SSD), with facial palsy, partial blindness, walking like a drunken sailor… and I also was still not sleeping (which seemed to magnify everything)

Now I am hiking, driving at night (i.e. my vision is back), 50% of my facial movement has returned in 5 months… things are finally on the up and up … and I hope to continue to improve.

Build up a good support network of local people- if you can. Try to get lots of exercise to help you deal with the stress of all this.

You are in the UK so you do not have to worry about medical bills and insurance. With a small tumor “wait and watch� is a great option. Remember size is not always a factor- sometimes it is location. With a 4cm I had “great� hearing and balance with my AN side- others with a 4mm tumor can have no hearing and their balance teetered.

I think you sound like you are in a good position with you’re AN. Try your best to relax- and hopefully the sleep will fall into place.

Keep moving forward.

Cheers,

4

[Esperanza]

Thank you for your words of wisdom!
..and thank you very much '4' for your very comphrehensive and informative reply!  How have you all found the SSD - still feeling devastated by my sudden loss - my specialist said not to avoid doing anything as the more i do things the better my brain will compensate.   It is hard though.. will this really get better?

What would have I done without this site and you wonderful people at the moment...

[goinbatty]

Within the past week, I've started having the strangest dreams.  Nothing bad.  Just off the wall crazy.  To give you an example, last night I adopted a brown bear as a pet.  I highly doubt my cat would like that if it was true - HA!!  Since having CK, I've noticed the tinnitus is louder and with clicking sounds on occasion more than before treatment.  A few nights ago, it was loud enough to cause me trouble falling asleep.  But for the most part, I just try to ignore it just like I did before. 

[Samantha n Adrian]

The SSD is actually better than I thought.  When I still had 30% hearing in my right ear, just before surgery, it was worse.  What I heard sounded like a bad speaker.  In noisy situations……restaurants, parties, etc…..it was very bad.  Post-op is so much better even though I’m totally deaf now in the right ear.  At parties people always want to talk to me in my bad ear.  I just have to tell them that I’m totally deaf in that ear.  Clubs with loud music are no fun.  TOO much noise going into one ear.  Musician’s ear plugs cost about $70 which is very reasonable….I just haven’t had one made yet.  Esperanza, AN’s are not as bad as one initially thinks.  There are many people who would love to trade what they have for an AN!

Adrian

[Esperanza]

Thanks Adrian,  I know you are right about people swapping their condition for an AN.  I don't want to do the 'poor me' route.  My sister has MS and she has already said she would swap me!

I just need some practical coping mechanisms to help me deal with what's happened so suddenly and with the fuzzy/can't concentrate/wooshy/high pitched/clickiness on that side - you say the SSD is better than you expected, did/do you experience any internal head noise now? I feel if I can somehow reduce that it wouldn't interfere with what's coming in on my good side. 
Reading about what everyone does/has experienced helps..     Did you find any feeling of pressure ceased post-op?

I am generally the one who gives practical and emotional support to others so this is a bit of a learning curve...

Not usually one for feeling sorry for myself, just not feeling myself at the moment.