Author Topic: Energy Rollercoaster  (Read 3464 times)

Echo

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Energy Rollercoaster
« on: August 15, 2013, 07:07:31 am »
Tuesday I had a really bad wonky head day, far worse than what I normally experience.  I blamed it on a sudden change in the weather.  It's not uncommon for me to experience headaches with changes in barometric pressure.  It was all I could do to get through my work day and get home to rest.  Wednesday I was in great shape.  Probably the best day I've had in months. Lots of energy, felt good all day with minimal balance issues.  I was able to keep busy all day and into the evening without feeling tired. This morning I'm exhausted.  I feel and look like I haven't slept in days.  How can I wake up so exhausted after such a good day and a good night's sleep?  I know enough to pace myself on difficult days and rest when I feel the need, but I now wonder if I should allow for a short rest even on good days.

I'm 4 weeks away from having Gamma Knife treatment so I'm sure the rollercoaster will continue.  Just thought I'd throw this issue out there and see if anyone has any tips on managing their changing energy levels.

Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

CHD63

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Re: Energy Rollercoaster
« Reply #1 on: August 15, 2013, 11:08:35 am »
Hi Cathie .....

I'm a slow learner ...... I have discovered that I simply cannot run around like the Energizer Bunny on my good days, or I will "pay for it" the next day.  So, yes, I think we should all allow for short rests, even on good days.

Thoughts and prayers .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Kathleen_Mc

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Re: Energy Rollercoaster
« Reply #2 on: August 15, 2013, 11:34:05 pm »
naps, even on a great day, are a must for me (even if I don't sleep just lie still for a period) and I'm many years post op!
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Echo

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Re: Energy Rollercoaster
« Reply #3 on: August 16, 2013, 06:41:28 am »
Thanks ladies!  I was beginning to suspect I need to take extra care of myself on the good days.  Perhaps grabbing 15 minutes feet up, eyes closed, quiet meditation or nap at noon may be a good habit to try and get into on a daily basis. 

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

MDemisay

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Re: Energy Rollercoaster
« Reply #4 on: August 16, 2013, 08:23:44 am »
Dear Cathie,

I agree with Clarice here.. And with Kathleen......Rest when you can I remember up to a few days before my Gamma Knife I had my off days and then there were my revved up let's get this over with days. I want to stress that proper exercise should be maintained daily as proper rest needs to be taken. It will soon be over make plans to meditate and pray( or spend some quite time) each day.

If you prepare yourself for what comes on the day of Gamma Knife you will be less anxious. Nobody told me how effortless and easy it would be, as a result I was very fearful.

What I was most amazed at was how silent the machine was, I had brought in a CD of meditation and I was startled when in the middle of the session (the Cd stopped and I said when will you turn it on Dr.Sisti laughed and said only 20 more minutes to go! The whole thing lasts for about 40 minutes.

You will soon be a postie toastie, and we will welcome you into our exclusive club!

Prayers till then!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

james e

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Re: Energy Rollercoaster
« Reply #5 on: August 16, 2013, 09:20:23 am »
Let me weigh in with my experience. My surgery was 41 months ago. I am still wonky 24/7...it never goes away, but you  get used to it. I am a physical fitness type of person and I still lift weights at age 64...still buff.

But, I have my bad days with fatigue. I have really studied what is going on with me, and I spend all day long just staying vertical. It is almost impossible for me to close my eyes and stay vertical for longer than 30 or 40 seconds. I use my eyes instead of my ears for balance. Staying vertical for most people is easy, just like breathing just happens. If your muscles need more oxygen, your brain tells your lungs to breath deeper and more often.

My brain is telling me you are falling over, and my legs and feet are always trying to keep me vertical. After a full day of doing this, I just feel worn out. Minute to minute it is not a huge effort, but hour after hour, it is fatiguing.

It is not barometric pressure that is causing your rollercoaster...it is your brain...and your first statement was you were having more wonky days. It takes a lot of energy to stay vertical when you are wonky. It might help if you can stay seated most of your day when you are wonky.

Physical fitness is really important. It will help you recover from your procedure  and it will help you deal with your fatigue.

Echo

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Re: Energy Rollercoaster
« Reply #6 on: August 17, 2013, 06:44:53 pm »
Hi James,

Thanks for the tip to remain physically active.  By your description, your balance issues are much greater than mine and it's helpful to know that you find the physical exercise helpful. 

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

ajb010

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Re: Energy Rollercoaster
« Reply #7 on: August 18, 2013, 03:42:06 am »
Cathie,

I want to agree with what most of the above have said, but also add a bit. Rest is so important! Our bodies are so miraculous at giving us little clues as to what we need to do when we are not feeling our best. If everything is spinning and you just don't' feel well, there is nothing wrong with taking a nap! Exercise is also important, but you also need to be very mindful of what you are putting into your body. The food we choose to ingest is what gives us the energy to get through the day. If you are choosing to eat meals that are highly processed, high in fat, high in sodium, etc., you are not going to feel your best throughout the day. I had a really hard time while I was trying to recover after my surgery because I always felt so terrible... Why??? Because I was eating terrible food all the time! It's crazy how much better you can feel by just eating healthy foods. I started drinking Shakeology and it really helped in giving me the energy to get through the day. Maybe you should look into this, or other protein shakes to help in giving you that boost, while getting tons and tons and TONS of vitamins. We all have to take care of our bodies for them to function the way we want them to. :)
Diagnosed 5mm AN 11/2011
Middle Fossa Surgery @House 3/2012
Bells Palsy 4/2012-10/2012