I havnt seen many people talk about EXTREME insomnia, but just by chance I looked up medical mysteries as I find some of them facinating, and the first one I saw was, the toddler or boy (or something like that) who didnt sleep, after watching turns out it was due to chiari malformation, and this is something I have dealt with since I was a child, I am on HIGH doses of a few medications and even then it doesnt always help. I guess I just wanted to know if this was something a lot of people experience with CM or is it just sometimes? Please share your experience!
Robin...
I am so glad you posted this....Sweet Jesus...I was the poster child for INSOMNIA....It was awful...when I tell you I was up for 5 days and nights straight..I am not lying.....It effected me and my entire family....from the lack of sleep..I was so on edge ect..
The docs gave me EVERY MED there was..at high doses to boot...NOTHING HELPED....I would just sit and cry...rock back and forth in dispair...as well as the insomnia I was feeling the nasty, painful effects of untrested Chiari.
Well....FINALLY..I had the decompression surgery....and guess what? RARELY do I go a night without sleep...and when I do have a restles night it is usually becasue of life issues that anyone out in the entire world would toss and turn.
I suggest you read this book called "Contents Under Pressure" by Ray D'Alonzo....he suffered with this too..along with many other things..great read and it is a book from the heart, by the patient...so uplifting.
I am sorry that I do not have any suggestions for you now..to help with your insomnia...seems like you have tried them all.
Have you talked to your NS about this? I had only talked to my primary about it in the begining..becasue I did not think it had anything to do with Chiari!!!
Let me know how you are doing.
Lori
thanks guys, I go to see the neuro surgeon this friday, just 2 more days! Seeing dr Ellenbogen, I know this sounds strange but my symptoms are bad and continue to get worse where I can not funtion, or at times have to use a walker, or wind up in the ER, I cant live like this being a wife and mom of three, ages 10, 4, and almost 3! Just doing normal tasks have become daunting. So I know it sounds crazy for anyone to WANT surgery but I have to say with my symptoms and quality of life that I would rather go through with this fairly low risk surgery so I can heal and possibly have some clue as to what it might be like to have a normal life, to be the mom I should be, the wife I should be. I figure the sooner the surgery happens the sooner I can heal and get passed all of this, and be happy.
I had been given pain meds and nausea meds and sleep meds and everything else under the sun but during a really bad attack those things dont help if not make it worse and I dont want to be on MORE meds, I am on about 7 meds as it is, blah. Anyway, thank you for you imput
I average only 4-5 hours of sleep a night, and I still got to get up and handle my 4 year old. The nerve pain won't allow sleep at a healthy bedtime. I usually have to burn my eyes out on video games or movies, and even that doesn't always help. Don't get to sleep till 3 usually, and have to be up by 7 am. It may not be too extreme, but it sure is exhausting.
Thank you all for your imput it gives me hope, I am just nervous now that the NS I see on the 4th will want to put me through other hoops before surgery and I really dont want to go through that, since I have been trying to manage my symptoms for many months now, and its NOT HLEPING. And if he says yes to surgery I hope that it will not be months out, I am hoping for ASAP. I dont want to struggle longer than need be, I am tired, hurting, in pain, and cant function, I dont know how people deal with other more serious diseases that have no cure, like my dad just recently got bells paulsy, and its heartbreaking to see him like this! But there is no cure or deffinite timeline of how long he will have this, they said it could be weeks or years, and not much helps him :(
I think that lack of sleep may be a symtom of cm, but I have a hard time sleeping I think due to anxiety, depression, and pain that also is a symptoms of cm
I typically have not had a difficult time falling asleep, but staying asleep is a nightmare. Not uncommon to wake up 6-10 times every night. I was prescribed muscle relaxers and Ambien which helped, but now that I’ve had surgery I hope to discontinue those medications and pray my body will fall into a more normal sleep pattern!
BTW - my surgery was just 3 weeks with Dr. Ellenbogen, so please don’t hesitate to message me if you have any questions about him.
thank you SOOO much, yeah my insomnia started before I had any other problems, as a small child, I am now on 900mg of seroquel, 12.5 ambienCR, and 3mg ativan, just to help me sleep and even then it doesnt always help, I would LOVE to not have to take medicine to sleep and be able to wake up rested! not that that is the only symptom, dear goodness, I have much to bennefit from surgery and nothing to lose. I just want a normal life!
I have CM and insomnia. I do not take any prescriptions for it. My Doc. offered but I declined. I take melatonin..the herbal kind not so much the pill by itself. I found out the staright melatonin(supplement) gives me a headache ontop of the one I have and weird dreams(side effects) I found a dissolvable kind with other herbs in it that helps aot. I also drink Sleepytime tea from Celestial Seasonings or just chamomile tea.