Old 03-24-2011, 07:41 PM #1 (permalink)
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Default Am I the only one?

I'm 38 with bulbar ALS...I suffer with severe nausea (which baffles my neuro), and just have zero energy. I have 4 year old twins that are my world and I want to have as much energy as I can for them, but I feel like I have weights attached to my body. The nausea also keeps me from alot of things. I hate this disease. Everyone says to fight, but it's like swinging at the air without hitting a single thing. Am I alone here?
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Old 03-24-2011, 08:13 PM #2 (permalink)
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Default Re: Am I the only one?

I am so sorry to hear you are going through this. You are not alone. Many of us feel the same frustration you do at this awful disease. I am a caregiver of a husband with ALS. Yesterday we cried and he was angry at not being able to do the simplest task for himself. My heart goes out to you . You are so young and I can't imagine how you are coping with looking after children through this. I hope you have good family and friends at your side helping you. I just want you to know you are not alone.
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Old 03-24-2011, 08:20 PM #3 (permalink)
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Default Re: Am I the only one?

Have you checked the meds you are on. Many times the neuro's don't realize what side effects there are and if you're taking more than one what interactions can result. My GP was a pharmacist in the Army, so he tells me what I should and shouldn't take. My neuro told me to take Benadryl while I was taking Flexeril. Read the side effects or call the pharmacist and ask. Will be praying for you.
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Old 03-24-2011, 08:26 PM #4 (permalink)
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Default Re: Am I the only one?

it could also be the stress. i dont have als, but i often get sick to my stomach when i am extremely stressed out.
im sorry this is happening to you.
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Old 03-24-2011, 08:26 PM #5 (permalink)
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Default Re: Am I the only one?

hello twinmom... so sorry to hear you have ALS so young, and with two wee babies. utterly cruel. Are you taking rilutek and getting your liver function done on a regular basis? lots of PALS can't take rilutek cos it sickens them (my mum is one of them.)

Do you ever get dizzy spells or feel faint? does your nausea come at certain times in the day? low blood pressure in the mornings of immediately after rising from a seating or resting position can cause feelings of dizziness and accompanying nausea.
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Old 03-24-2011, 09:16 PM #6 (permalink)
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Default Re: Am I the only one?

I wondered about drug side effects, too. And oddly, my sense of smell seems heightened. I wonder if you no longer can tolerate something--like coffee, for instance, something which has always been a favorite. I will add that other than sleep meds used for years, I'm not using any medicine... Just a thought.

Another off the wall thought is to try wearing "sea bands" on your wrists. The nerve being pressed is said to be near the place in the brain telling you about the nausea. I found them really helpful years ago. Search for "Sea Bands".
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Old 03-24-2011, 09:28 PM #7 (permalink)
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Default Re: Am I the only one?

Ann, I forgot about the bands but they do work. I used them with one of my pregnancies and was able to eat EVERYTHING. If those don't work, you could ask for a low dose of phenergan. Pray that you find something that helps.
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Old 03-25-2011, 08:54 AM #8 (permalink)
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Default Re: Am I the only one?

I'm not taking any meds. I tried Rilutek but couldn't tolerate it. The nausea hits me first thing in the morning, and when I try to do something too fast. It also hits me when I get upset. They have tried every med out there with no success. I want this disease to disappear as fast as it arrived! Thank you all for helping me. Hugs xoxo
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Old 03-25-2011, 08:52 PM #9 (permalink)
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Default Re: Am I the only one?

sounds like either low blood pressure or perhaps the sensation of being thrown off balance owing to weakened muscles.

i'd suggest talking with an ALS specialist nurse -- they generally know more about the everyday living with ALS than the neuros! if possible have a caregiver/nurse to monitor your blood pressure at different intervals in the day.

you might also want to have your breathing checked just in cause the nausea could have something to do with CO2 build-up. mention these issues to your nurse.

my PALS had for a time fainting/nausea issues related to her low blood pressure but thankfully these episodes don't occur much anymore. Another odd inexplicable symptom of this lousy disease -- and how typical! to turn up, frighten you, and then leave again.. in fear of it returning again with greater severity!

Hope your little ones put a smile on your face today, twinmom. keep your chin up!
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Old 03-26-2011, 01:15 AM #10 (permalink)
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Default Re: Am I the only one?

never think you are ever alone in this. i too battle with the fight concept many people say. true its hard to fight what knowone can see. all we can do is live in the now. do what our body alowes us to do, but plan for the worse. stay one step ahead of this. . ask and ask again. someone here has gone through what you are going through now or will be in the future. for better responce put ? in titel so we all know first off what help is needed.
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Old 03-26-2011, 02:00 AM #11 (permalink)
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Default Re: Am I the only one?

Hi smwelder,

Hi my name is Elizabeth. I just wanted you to know that you are not alone at all.
I have been there from the first stage of this most shocking disease to the end and I understand where you are coming from.
I felt as if I myself had MND the only difference was I had movement and ability to move around and do stuff. I spend 17 months caring for my dad and now I am here to help anyone else that needs support and my knowledge..


Please email me at butterfly.silverwings@gmail.com if you have any questions.

Elizabeth
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