Old 12-17-2006, 01:26 PM #1 (permalink)
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Default Taking Rilutek - head pain?

Hi - my Doctor prescribed Rilutek last June before he went on a Sabatical to Israel for six months. I started getting head aches about three months later at night only which wake me up. I called his assistant and she told me that if it was a reaction it would have started right away.
I only get one now and then but I had a strong one the other night. If I keep my head still and prone it helps. Next time I have one I am going to sit up and see if it goes away. I am fine when I go to bed and fine when I wake up. That plus the fact I have never had anything like it before, makes me think it is the Rilutek. IF it is and is not doing any damage, I will continue to take the darn pill......ruby from vancouver (surrey)
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Old 12-17-2006, 02:06 PM #2 (permalink)
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Hi Ruby. Sorry I can't recall but are you on Bipap? One of the things that signifies a need for it is waking up with headaches caused by elevated CO2 and decreased oxygen. If you are not on Bipap try sitting up and taking deep breaths and see if that helps the headache go away. AL.
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Old 12-17-2006, 05:55 PM #3 (permalink)
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Default Rilutek, headaches & Bipap....

My husband is also taking Rilutek, but has had no headaches. Ruby, I hope your doctor is able to discover the cause your problem soon and provide a solution! Your question and Al, your response brought a question to my mind.

My husband does have some trouble sleeping. I think it is due to lack of oxygen...he is unaware of how he struggles to breathe when he is asleep, but I'm all to aware of it! We are supposed to go to a pulmonologist next week, and my husband doesn't really understand why because he doesn't realize he has breathing problems. Not wanting to upset him by arguing, I'm choosing to let the doctor explain and prove to him that he probably needs bipap.

That brings me to my question. What exactly is bipap? I know it isn't invasive like a vent, but I don't know what to expect, and I need to be prepared so I can help him accept it if the doctor feels it is needed. We have already decided together that he doesn't want to go on a vent, so I need to know as much as possible ahead of time to help him understand and not get depressed.

Thanks for any info you can provide.
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Old 12-17-2006, 08:02 PM #4 (permalink)
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Hi Pollyanna,

Bi- Pap is a device very similar to a C-Pap, a machine worn at night by millions of people for sleep apnea. The primary difference is that a C-Pap delivers constant pressure to keep the airway open. A Bi-Pap alternately delivers two levels, a high level to fill the lungs and a low level during which the lungs empty. It is similar to a vent, except the interface is through the nose and/or mouth instead of the more invasive tracheotomy.

Most people with ALS first reach a point when they have trouble breathing when they lay down, due to the way gravity acts on their diaphragm. A Bi-Pap is a very convenient "non-invasive" way to solve this problem. Most people report more energy during the day after beginning night time Bi-Pap use. This is because usually the quality of sleep improves dramatically.

There are many interface methods available to achieve a seal against your face. I found nose pillows with a layer of KY Jelly to be the most effective and comfortable. Eventuality I found it difficult to breathe even when sitting. At this point I used Bi-Pap 24 hrs./day. During the daytime I used a "Nasal Aire" interface. I liked the aesthetics of this model, and was more comfortable going into public. Using Bi-Pap 24 /7 gave me an additional two full years before having to get trached. Looking back, this step was not really necessary, but psychologically, it was helpful.
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Old 12-18-2006, 11:38 AM #5 (permalink)
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Hi Polly. I use what they call up here a full face mask. It covers the nose and mouth and kind of looks like the ones you see the fighter pilots wearing in the movies. Very sporty and macho I think. Not sure if that was behind the design but it works for me. It is an Ultra Mirage by ResMed. The Bipap machine sits beside the bed and it quite quiet. Usually doesn't make enough noise to bother your other half. Takes a bit to get used to but most can adapt in a few days. Using it while sitting up or just resting in the day is a good way to get used to the mask and the breathing cycles before putting it on and trying to sleep with it. Hope this helps. AL.
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Old 12-18-2006, 12:26 PM #6 (permalink)
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Quote:
Originally Posted by ruby ben
Hi - my Doctor prescribed Rilutek last June before he went on a Sabatical to Israel for six months. I started getting head aches about three months later at night only which wake me up. I called his assistant and she told me that if it was a reaction it would have started right away.
I only get one now and then but I had a strong one the other night. If I keep my head still and prone it helps. Next time I have one I am going to sit up and see if it goes away. I am fine when I go to bed and fine when I wake up. That plus the fact I have never had anything like it before, makes me think it is the Rilutek. IF it is and is not doing any damage, I will continue to take the darn pill......ruby from vancouver (surrey)
Why don't you stop taking it for a while to see if the problem clears up? Simple test. The value of the Rilutek is debatable anyway so you are not going to hurt from missing a few weeks of it.

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Old 12-19-2006, 07:32 PM #7 (permalink)
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Default My Dad's taking Rilutek

My dad started taking the Rilutek about a month ago...and he is not experiencing any headaches, but he is experiencing a lot of bowel problems (diarrhea all the time).... with painful cramps in his stomach....he has called his doctor who told him that it is neither the drug nor the disease that is causing this....he went off the drug for a couple of days and the cramping and diarrhea stopped he then went back onto the Rilutek and the cramping and diarrhea has started again......I am thinking it is the drug but I could be wrong....

Is anyone that is taking Rilutek experiencing the same problems or similiar problems....

Thanks
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Old 12-19-2006, 09:37 PM #8 (permalink)
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Hi Lisa. Does your dad go to Sunnybrook? I did find that when I started the Rilutek it bothered my stomach but it got better with time. Two of the listed side effects for the drug are diarrhea and stomach cramps so I wonder why the doctor told him it is not the medication. AL.
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Old 12-20-2006, 05:55 AM #9 (permalink)
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quadbliss

i like your attitude and helpful explanatiions

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Old 12-20-2006, 08:51 AM #10 (permalink)
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Hi Al.....yes my dad does go to sunnybrook his doctor is Dr. Lorne Zinman....and when my dad called Zinman he said he doubted it was either causing the pains..thank you very much for your response...it is most helpful.....

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Old 12-20-2006, 11:42 AM #11 (permalink)
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Hi Al, Lisa, Quadbliss & all...

As usual, everyone is so helpful. Quadbliss & Al, thanks for your explanation of the Bi-Pap. I'm almost positive that's what my guy needs. I sorta mentioned it today, and he didn't seem thrilled, but that's typical. It takes him awhile to accept any new treatment...he still can't get used to the fact that this is always gonna get worse, not better. And I have to agree...it's like living in "Opposite World"...all the things that usually help a situation (muscle strength, for example), have the opposite effect with ALS. And usually, when you take a medication, you expect it to make you well, but we all know it's just not gonna happen with ALS...at least not now. BUT, I'm so thankful for all the little devices and even the meds that do help in any way. We are discovering that even the smallest assistance is HUGE when you have ALS.

And that goes for the assistance you folks always give on this forum...always HUGE, and I thank you all.

Merry Christmas everyone!
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Old 12-20-2006, 03:00 PM #12 (permalink)
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Default Change

Pollyanna,

One of the fundamental characteristics of every object in our universe is change. From the individual cells in our bodies, to the stars that produce and sustain life, everything is in perpetual flux. Nothing stays the same for even one second. If we understand and accept this feature of reality, we will be happier and more content with our lives. If we deny this, or try to cling to the way things “should be”, we will suffer needlessly. This is especially true when confronting a progressive disease like ALS.

Let go of the past and live in the present moment. It is all we really have. The past and future only exist in our minds. The moment we recognize this, we can begin to live life more fully.

Mike
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Old 12-20-2006, 03:10 PM #13 (permalink)
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Hi Lisa. I go to Dr. Zinman and don't know your dad or his case but do find it surprising that he would discount Rilutek as a possible cause of the problems. Maybe he has other issues that you are unaware of. AL.
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Old 09-07-2007, 09:17 PM #14 (permalink)
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My mom took Rilatek for one month and for a while she was worried it was giving her headaches. The real problem though was that her diaphragm was already so weakened by ALS that she was retaining too much C02 just like Al said. If you are not using a Bi-Pap machine PLEASE demand one from your dr or whoever is in charge of your care and PLEASE try very hard to get used to using it. Best wishes to you.
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