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Firmagon and insomnia

GeorgeG
Posts: 127
Joined: May 2017

I am in month three of Firmagon and have developed a wicked case of insomnia. Wake up 1 - 6 times a night all edgy and uncomfortable and do the zombie walk as we call it. Anyone else have this and solve this problem? I have developed a nasty case of cumulative sleep derprivation.

 

Thanks,

 

George

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I had the same from HT.  I used to take a walk for 20 minutes before sleeping.  I also use a technique that I invented.  If you can just lie there and not move a lot, you will get some benefit.  You can use sleep meditation tapes to pass the time, there are many on youtube.  What I do is go to what I call half way house - a place 1/2 way between sleep and awake.  I do not try to go to sleep from halway house, but often that does happen.  If not, I just lie peacefully and meditate usually without music. I also use self hypnosis for this, info on youtube as well.  This is very hellpful as well, and I do this every night -https://www.drweil.com/health-wellness/body-mind-spirit/stress-anxiety/breathing-three-exercises.  A lot of Osho Meditations involve breath therapy.

And, now at 85, I am not afraid of sleeping pills so I sometimes take 7.5 mg dormicum.  Do your research about this.  It works great for me.  I have to get up about twice a night to pee, and I have no problem going back to sleep.  On the Keto diet, I have to drink huge amounts of water.  Also some say a few tokes of Weed will help.  I smoked a lot when young, but now I do not want to do anything to affect my consiousness.  Good luck---

Love, Swami Rakendra

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

I would take Rakendra's advice instead of looking for solutions with pills. I believe that meditation can solve simple issues like this case of insomnia caused by LHRH drugs. Pills could increase further the problem affecting our natural body signaling system under the brain's control. Firmagon impedes the pituitary from doing its job, stopping the functioning of the testis, and the lack of testosterone in circulation ignites systems to request the brain to down regulate orders for its manufacturing, in a vicious cycle. The situation deregulates many of our clocks (time, temperature, vision, etc) leading to constant brain activity and to a series of nasty symptoms. Meditation manages to interfere with those clocks and alter the way the brain reacts to the dysfunction.

Using tactics to change the life style also improve the occurrence. Afternoon naps earlier dinners with lesser liquids intake, and stressful physical exercises like evening brisk walking, etc.

Best wishes,

VG

GeorgeG
Posts: 127
Joined: May 2017

Thank you for the suggestions, I am working to impliment them. One of the differences between Firmagon and Lupron, at least on paper is that Firmagon lists a much higher rate of insomnia. It did not kick in until the second month. Is anyone experienced with multiple months of both Firmagon and Lupron and if so was there any difference in sleep problems. I am asking because I have the option to switch either now or in the future should additional hormone treatments be necessary.

 

Thanks,

 

George

 

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

My experience is with leuprolide (Lupron, Eligard, etc) however I read that guys experienced different symptoms with different drugs. You can try substituting Firmagon with Lupron and later return to Firmagon if you get worse effects with Lupron. Both drugs have the same purpose in the treatment which is to avoid the pituitary from sending down the signal requesting testosterone production (leading to chemical castration), but Firmagon acts as an LHRH antagonist (fakes the FSH) while Lupron acts as an LHRH agonist (produces FSH).

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I've been on Lupron for six months and the worst side effects have been mood swings and hot flashes. Fortunately I have been spared any weight gain or gynomastia, which are common for some men but so far not for me... probably related to one's attitude toward food, as I eat to live, rather than live to eat.

Initially night sweats were a big problem (the nighttime version of daytime hot flashes).  There is a ceiling fan over my bed but that proved impractical, for as soon as I would fall asleep I would wake up cold and shut it off, then cover up and sweat, so the fan went back on, and so on.  I did a lot of reading to learn what has helped other guys and eventually requested the antidepressant Venlafaxine from my RO who had started me on Lupron. He refused, however my GP was willing to prescribe it for me.  It also helped tremendously with the mood swings.

Because of a potential drug conflict I had to stop taking a narcotic that I had been using for over a decade for a severe leg injury. That was not easy, but was necessary. Subsequently I developed restless leg syndrome which disrupted my sleep as well. My doctor prescribed Gabapentin, which reduced the leg spasms and also helped with the leg pain from that old injury. I have read that it also is often prescribed for hot flashes. For me it also induces sleep. I take it an hour before bedtime and it pretty well knocks me out.  The Gabapentin leaves me feeling a bit dopey in the mornings so I make sure to walk carefully and stay close to hand holds until fully awake.  I do get up 2-3 times a night to urinate and a large volume at that. I have read that increased nighttime urination is a common side effect of Lupron, so I don't know if that is the cause.

I should mention that I had been experiencing frequent bouts of crying ever since my PCa symptoms first appeared several years ago, and I probably should have been put on an antidepressant back then. But that did not happen until just recently, and then only at my own insistence. Just how much the Lupron contributed to or exacerbated my newly recognized emotional instability I do not know, but results over the past three months with the combination of Venlafaxine in the morning and Gabapentin in the evening has brought about much improvement in my daily state of mind, as well as much better sleep. I had been reluctant to become dependent on any drug and other than an occasional Tylenol that's all I use.  I figure at my age I am fortunate to not be on a lot more.

 

Grinder
Posts: 438
Joined: Mar 2017

I don't know if this would help or not, but it was recommended to me to apply topical magnesium cream to my legs for RLS. I have had it since I was a kid, and would often keep me awake at night, and long trips in a car and traffic jams were were awful. But now I just take a dab of magnesium and spread it on my leg and RLS disappears within a few minutes, and for the rest of the night. And taking in magnesium into your body, even through your skin is not a bad idea anyway. I use the Ancient Minerals version of Magnesium lotion from Amazon. It may not work for you as there may be different causes of RLS, but hey, it's just a few bucks for a bottle.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thanks Grinder, I may give it a try.  I have long taken magnesium supplements to counteract the mg deficiency caused by long term use of PPI's for Barrett's esophagus, and have used magnesium maleate (also sold under the name CALM and others) for RLS and other muscle spasms before the Lupron SE's brought about an entire change to many of my daily routines. I see on AZ that the lotion also has melatonin, which I suppose promotes sleep. Lowest price there is $18. I may go for the gel and add it to my monthly subscription order. Thanks for the tip.

GeorgeG
Posts: 127
Joined: May 2017

One thing that I have discovered is that reducing or eliminating sugar, especially after 2pm helps. So does milk before I go to bed.

on a separate note, my blood tests before my fourth Firmagon shot show that my testosterone is now undetectable. The standard for testosterone suppression is to get under 50 with many people of the opinion that under 20 is the target. To the extent that lowest possible testosterone is good, you can't get any better than undetectable. In my case, Firmagon is working well so I am sticking with it at least through neo adjuvant therapy during radiation. My starting level was 635.

George

 

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