Trouble sleeping
 

I'm wondering what other MGer's out there do to truly get a good nights rest. I am currently on 20mg of hydroxyzine per night, yet, I don't wake up feeling rested. (I am sleeping 4-6 hours per night.) I've tried calming teas, epsom salt baths before bed, no eating, and other things. What are some of the things/medicines you all have found to be effective? I go back to my neuro on the 30th and would like to discuss other options. Any input would be wonderful. I've struggled with MG for 10 years now, and it only seems to be getting worse...not ready to just give in though. I need sleep...I need to wake up feeling refreshed. :/

This may sound like a bad thing but i was desperate.

I haven't had a good night sleep in like 3 months, i am always sleepy and tired. i am 23 but lately ive looked like i'm 35.

I recently visited a friend and he was smoking marijuana... i smoke a little bit and i slept 10 hrs straight and woke up feeling like a baby. The next day i took my dose of mestinon(a pill and a half) at around 7am and didnt need another one until 7pm. i am in NO WAY saying we should all go out and get stoned, but I AM open to the possibility of using this as an emergency type of thing.

-G.

I use Lunesta. Insomnia totally sucks. :(

Does Lunesta leave you with a drugged feeling? I've tried ambien, and it works, just don't like the drugged feeling.

Sunshine...I'm scared of pot! Yet, I've wondered!

I googled it... lol

a lot of people are pro cannabis others are against it. i am neither.
All i know is that i smoked friday night and saturday i only needed to take mestinon twice. Today i didn't need to take it until 1pm.
(i usually need to take it at around 7 am so by the time i get up at 8 it has kicked it already - and i take a pill and a half every 4 hours or the leg weakness and slurred speech begin)

i stay away from sleeping pills, they relax me too much and i feel like a raggedy doll. it makes me feel worse.

Hope you find something that helps, i know how sucky it is to be tired ALL THE TIME!

The Lunesta does not really leave me "drugged" feeling. I take it around 9-10 pm and usually stay in bed until 6:30 or 7 the next morning. The worst side effect is an odd taste in my mouth but I've learned to work around that.

There are some good coupons available for Lunesta. I've had 12 mos with $0 copay--a whole year free! Pretty nice.

My neuro prescribes Lunesta. It doesn't have a bad taste and I'm not groggy in the morning.

Oops ... I meant Sonata.

Thanks...I'm going to discuss these options with my neuro. My joints are starting to hurt, and my face is swelling a bit. I'll be bringing that up too. I doubt the joints aching are MG related. I'm 37, it may just be age! Lol

Before I was diagnosed with Myasthenia I was having a job reading my book in bed so I got an iPod and downloaded some audio books and listen to them instead.

I find during sleepless spells that listening to my iPod audio books either sends me off to sleep, or I lay there resting listen to the story. (I always set the iPod Timer for Sleep Mode of 30 minutes so that if I do drift off I don't lose my place)

Rainbow...that is an excellent suggestion. Thank you :)

I got on Ambien, and it made me go totally insane. Whacko. I would totally forget stuff from one second to the other. If I can't sleep, I just lay there. I read on my Kindle and it helps just so the book isn't too interesting.

I like pot, but I am terrified of the legal problems. If I get a drug arrest, I will lose my job, my insurance, and life will not be worth living. If it becomes legal, I will certainly try it for the MG. It is not worth the risk since it is illegal. I wouldn't even have to be convicted to get fired. And I will never find a job as easy as this one.

Wondering, can pot be any worse than the rest of the meds I'm been on for the past ten years?? Lol

Sleeping pills, benzodiazepams, narcotic pain killers, tobacco, and alcohol are all legal. Does that make them safer than pot? I seriously doubt it.

I find I have trouble shutting my eyes completely. Also, prednisone keeps you awake (and I took 20mg accidentally tonight as it looks exactly like my new medicine, hence why I'm still up). I used to use a light mask to help sleep. My new medicine regime is putting me into deep sleeps, though. Its also making the MG worse, though, as they've found I have one disease that makes muscles weak and another that makes them tight.

Instead of spending billions fighting the stuff, they should regulate and tax it. When I was growing up, I had a pediatrician who told me that if I ever started smoking something, to choose pot as cigarettes would kill me.

(Just to be clear, I don't use pot for my MG or SPS as I could lose my job over it and get randomly tested now and then).

Maybe others that are pretreated with Benadryl prior to having IG infusions have the same experience as I. I sleep most of the time. Antihistamines make you sleepy.

I have trouble sleeping and maybe 1 or 2 times a week when I want to get a good nights sleep I take 1 and sometimes 2 Benadryl.

Tony

But Benadryl is an anticholinergic. It does the exact opposite thing that Mestinon does.

It seems to really be a no win situation for us MGers. One pill helps one way but hurts in another. I do have a wonderful neuro that listens and isn't afraid to try new things. Hoping for an improved solution for sleep come my appointment Monday!

I'm not sure how good my neurologist is, but at least he is not trying to kill me by over-medicating me. This makes him an unusual doctor. They always want to drug me to death. So I guess he is good.

I used to use it for sleep, but have stopped taking it because I felt like it really messed with my thinking and took more than six hours to wear off. I've since done research and found that MG patients may have less acytocholine (sp) in the brain and the benadryl blocks what we do have so I only take it for allergic reactions now.

I suspect that I have less acetylcholine in my brain. I went through a stage where I had terrible memory problems. That problem is now gone. My neurologist thinks that it was all the drugs that I was on, and benadryl was one of them. I don't take it any more.

southblues, just wondering what the other drugs your neuro had you stop taking?

We may all learn something to dicuss with our own neuros.

scrubbs

I was the victim of bad diagnostics............

Cymbalta - I was diagnosed with depression based on tiredness. I do not feel that I am depressed.

Clonezepam - This was given due to sleep issues

Ambien - Also for sleep issues (I quit this one myself)

Then I switched from ambien to Benadryl

I am very convinced that these drugs almost killed me.

I was also on Ranexa which is a cardiac drug that is prescribed for chest pain. I quit taking it on my own after I fainted and got injured. (This is a typical side effect of the drug.) The new cardiologist said that I never should have been on that drug.

MG won't kill you
a toxic liver will get you instead.

Lunesta, mest. pred. tylenol aspirin, advil , ambien it is all poison and you are digging your grave early.

FDA
the fraud and deception association

the AMA
american malpractice assoc.

s

Myesthenia gravis can kill you. It can totally suppress respiration until you die.

If my liver dies, it is probably more related to other substances that I abused in my younger days................

Yes, MG can and does kill. I have almost lost my life due to the fact that MG shut my lungs down. I'm blessed that I'm so close to a hospital in times of crisis. Drugs aren't the only option, but sometimes they are the best option.

As someone who has experienced life with both the right combination of meds and the effects of a disease without meds...I choose the meds, even if it means an early grave. What's the point of life if you can't live it.

Not to say you don't have a point about fraud and issues with the FDA. But these are all things that have to be fixed. Unfortunately, we will probably have to vote in an entirely new congress that is not beholden to lobbyists before things will change and I don't see it happening anytime soon.

On September 11, 2007, Sepracor signed a marketing deal with British pharmaceutical company GlaxoSmithKline for the rights to sell Eszopiclone (under the name Lunivia rather than Lunesta) in Europe.[22] Sepracor was expected to receive approximately 155 million dollars if the deal went through.


However, on average, Lunesta patients still met criteria for insomnia and reported no clinically meaningful improvement in next-day alertness or functioning.

so the study shows it really does not work, except to poison your liver.

http://en.wikipedia.org/wiki/Eszopiclone

Neither will cancer, plague (and other severe infections).

In fact without modern medicine and its poisonous medications we would all live to be 100, staying young and healthy.

Without modern medicine there would be no diseases at all.

This guy you keep on citing is a fraud. He sells pseudoscience and illusions.
He uses half truths to convince you with very wrong conclusions.

Possibly (and hopefully) your MG is relatively mild and under good control without any medications. But, you are still at risk of having a more severe exacerbation which could endanger your life.

Please watch this movie of an MG patient, prior to there being any medical treatment for this illness. The mortality rate at the time of Marry Walker when patient with MG received no "acidic poisons" was very high.

http://www.youtube.com/watch?v=uRoRs...eature=related

Just curious, but if Prostigmine already existed when she did her experiments, what was it developed for?

It was developed to defend against nerve gas attacks at the end of WWII, specifically "Soman".

http://www.infobarrel.com/What_is_Py...ine_Bromide%3F

Try Drinking Tart Montmorency Cherry Juice
 

I have found Tart montmorency cherry juice to be very helpful for helpin me sleep. You can find in most health stores. It should be unsweetened, no additives.
:hug:

Curare was used by the Indians as a poison on their arrows.

It caused paralysis of the person hit by it.

This led to physiological studies in the 19th century. It was later used in surgeries to stop patients from moving (and its derivatives are still used for that purpose today).

physiostigmine is a natural substance produced by the calabar bean.

It was coincidentally found to reverse the effect of curare in anasthesized dogs. http://www.nickalls.org/****/papers/...urare1985a.pdf

Marry walker noticed that patients with myasthenia have symptoms resembling curare poisoning. That is why she tried physiostigmine.
But, this natural substance had significant side-effects.

The pharmaceutical company Roche developed a synthetic substance which was more tolerable-prostigmine. (later the name was changed to neostigmine and is still used by anasthesiologists to reverese muscle relaxation after surgery)

This was given to another MG patient with better results.

http://www.ncbi.nlm.nih.gov/pmc/arti...0680-0107b.pdf

Pyridostigmine was developed later as an oral medication. As was oral prostigmine and mytelase.

Thanks. I find the history of all this very fascinating as nothing was developed specifically for MG, they just found other things that worked. Its a shame that they're limiting our choices now by taking the other two off the market.