Author Topic: The Fatigue!  (Read 1028 times)

KristenWS

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The Fatigue!
« on: August 30, 2018, 02:26:37 pm »
Hello Fellow ANAer's - I am almost two months into 1cm left side acoustic neuroma diagnosis. I have been to two specialists and both have agreed that the best plan for me right now is watch and wait with another MRI in six months and to do the best that I can with managing the symptoms (a very light word I would say).  Have been getting a bit better each day since my acute incident (paralyzing vertigo) in June but what I am dealing with now is balance issues, tinnitus and fatigue.  I have 35 % hearing loss in left ear, I am in PT for the balance and have tinnitus I just have to live with but the fatigue is overwhelming. Prior to this diagnosis, I was a real dynamo and super active at work, sports, homemaking, night owl.  Now I do one little task whether it be work or home and I am so wiped out.  Any tips besides napping (type A person, can't really nap) and does it ever get better?

Also, is there any information on why some folks only experience hearing loss and others have balance, fatigue, tinnitus?  When I had my acute incident, it started with the vertigo and the whole world going sideways for three days.  Hearing loss wasn't even an issue or a concern.  I would consider just hearing loss a blessing -- these other "symptoms" are killing me.
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

wasbjs

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Re: The Fatigue!
« Reply #1 on: September 04, 2018, 11:08:16 am »
Thank you for your post.  I was diagnosed with a 7mm AN in May of 2017. My cardiologist was the one who referred me for an MRI.  l was at his office for routine blood work and I mentioned walking into door frames, not walking in a straight line, nausea, "cotton head" feeling, and diminished hearing in my right ear.  Thank goodness for Dr. Ojeda.  He listens and actually spends conversation time with his patients, therefore, he said he knew I was not a complainer and thought my symptoms warranted investigation.

After my MRI and diagnosis, my ENT consulted doctors at Vanderbilt.  it was recommended to "watch and wait".  The diagnosis scared the "bejeebers" out of me so I did some research and sent my results to House.  A doctor from House actually called me and thought "watch and wait" was appropriate advice with a follow-up MRI in 6 months.

I joined ANA.  I contacted 2 different women listed on this site. I followed advice for trying Tai Chi to improve my balance and slowly, but surely became more positive about the diagnosis.  I learned it was necessary to concentrate on the task of walking whenever I was out and about.  I became accustomed to the slight dizziness.  The nausea diminished.  I learned to concentrate really hard when in a group because of diminished hearing capability.  My fatigue, I think, comes from the great need to focus on the task at hand.  I do think I became accustomed to my symptoms which I now know were basically slight.

This past March, I had a second MRI. The tumor had not grown.  I rejoiced and decided to just put it out of my mind--unfortunately, not literally.

However, for the last two weeks I have been very dizzy, very off-balance, nauseous, felt my head is actually heavy, and have lost more hearing on the AN side.  After feeling rather back to normal for over a year, these renewed and more intense symptoms have thrown me a curve ball.  I guess I should never have taken my adjustment and the lack of tumor growth for granted.

I am finding everyday activities much more difficult.  I actually have to "talk myself" into activity.  My head feels like it is a helium balloon.  Every chore seems to be exactly that--a CHORE.  Nothing seems automatic or easy.  It all requires concentration, which is very tiring.

I am attending the ANA seminar in Nashville on September 29.  Until then, I will just keep on keeping on and probably request another MRI in October.  I have found that direct communication with other AN patients is VERY helpful and most comforting.  I did join 2 AN support groups--one in Knoxville, where I live, and another one in Nashville.  It is extremely uplifting to talk with others who are on the same path for treatment and recovery. 

There is an abundance of information and support available, but each person has his/her unique symptoms and coping mechanisms.  AN's are capricious.  The best advice I believe anyone has ever given-- remain active and positive.  As with any malady, a positive attitude is extremely empowering. 

By posting on this site, you have reached out and opened the door to unlimited compassion, understanding, and information. 
My best wishes go out to you as you face this new challenge.
wasbjs

 

hapicap

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Re: The Fatigue!
« Reply #2 on: September 09, 2018, 08:38:37 pm »
Hi,
Reading your post describes what I have been experiencing for 6 weeks.  My balance was the main issue and was initially diagnosed as vertigo.  I have minimal hearing loss and my symptoms have all been related to balance, tinnitus and head/ear pressure.  I had 4 weeks of home vestibular training and I walk much better in my house.  I still go off balance somewhat in the bright sun and at night.  When I spoke to the 2 neurologists, they initially focused on hearing.  I was more concerned about my balance, as I only had a slight hearing loss.  I was told that it is likely the tumor compressing the vestibular nerve in the canal.

I too suffer from extreme fatigue, but I think it is how hard I concentrate on performing a task and training the left side to compensate for the right.  I used to be an energizer bunny and could walk for miles, now I seem to need a nap after every little task.  I did have an off weekend these past 2 days, more off balance and light headed than I've been in a few weeks.  I am trying to push myself harder to function as close to "normal," as I can, but everything feels so different.

It does help to hear that someone else has symptoms similar to mine, as I thought I was going a little crazy.  If it was just my hearing, I think I could handle that much better and I don't think I would feel so wiped out all the time.  Hang in there!

Michelle

Freelander

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Re: The Fatigue!
« Reply #3 on: September 25, 2018, 04:07:02 pm »
Hi,

From my experience, fatigue is one of the lessor talked about symptoms of AN, though I think it would apply to any injury to the brain and nervous system.   My recollection of its cause with a tumor like AN is that the brain needs to adapt to the competing demands of the usual AN symptoms such as, tinnitus, headache, balance disturbances, facial numbness, ear fullness, etc, and in a subtle yet concerted way, at least for me, the brain is working harder adjusting to these disturbances while it tries to self correct or reset.  This effort, all in the background, has an energy expense, and the easier it is to become tired, even when sedentary.   To overcome this additional drain, additional rest is key, especially if one is active. Since I enjoy being highly active, and as others have stated, we need to concentrate more when doing them.  Acclimating to the symptoms and making appropriate adjustments are key.  I don't know if this happens for everyone, yet it is part of my daily life, and I expect the same going forward.


mac84

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Re: The Fatigue!
« Reply #4 on: September 26, 2018, 07:00:01 am »
This is one of the reasons I got a hearing aid for my bad ear even though my hearing isn't that bad. I was worried that the continued tinnitus at 5000hz was causing me some stress 'in the background' since it was CONSTANT.  I have enjoyed less stress since I have the hearing aid and use the masking sounds.
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

gary.s

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Re: The Fatigue!
« Reply #5 on: September 26, 2018, 02:07:34 pm »
I think Freelander summarized the fatigue issue very well. Our brains are working very hard to accommodate all of the AN symptoms. My neurologist told me that an Acoustic Neuroma causes the brain to be like an overworked muscle, and it just gets tired from working so hard. When you add in the hearing loss, balance issues, vertigo and facial numbness, of course we are fatigued. It is important to rest when your body tells you to rest. 

Gary 
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

jami

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Re: The Fatigue!
« Reply #6 on: September 27, 2018, 10:03:21 am »
Thought i would chime in.

I did not have vertigo or hearing loss, but facial issues (and FATIGUE!).  I have used many times the fatigue summarization that gary.s mentions re: how our brain is working, and it gets tired.

I support all of these comments re: fatigue. Not talked about as much, but such a big deal. My life turned into work only (had a bit of a battle to get any medical leave before surgery....whole other topic. The lesson being need to be more vocal about my needs, vs depend on others) and in bed between 8 and 9 each nite, to make it through. Deciding when to make tough decisions and at what time of day was key.

It is so interesting how different the neuroma presents between patients. I appreciate this forum so much.
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment