Hi all
I have started the trileptal.Took my third half pill last night-150mg.
Makes me so nauseous-I don’t think I can continue.
Also my medical marijuana oil that I take at night has not been working to get me to sleep.
Does anyone have any suggestions?
I really need something to work-don’t want to be a wimp and stop so soon-but I just want to hide the bottle on a high shelf right now.
If I take it with something will that help.
I have the generic brand.Is name brand better?
Thanks
Happy Friday
Good morning Ellen
My experience with the drug was serious nausea and vomiting and low sodium and had to be hospitalized. Please let your dr know so you can be monitored closely. Kristi
Thanks Kristi
Also
I have peed my pants 3 times since starting it.I have panties hanging on heat registers all over the house.
Sexy???
NO
Anyone have experience with lack of bladder control on this drug?It was not on the fact sheet that I got.
Ellen. You sexy thing!!! That’s priceless. Lol. I know for me I had to constantly go to the bathroom in the night and I had resorted to wearing a pantry liner to catch it. You know that weird thing that when your eyes lock on to the toilet and you have no control??? Maybe it’s just me. I have to laugh at myself. If it’s a new problem then I would suspect the med. I know of all the medications I took and failures with them and the ones I’m on now I know it’s affected my ability to hold it. I don’t get out and walk for exercise unless the weather is perfect. That would help. Also with years of holding it while working on the clinical floor and not able to leave patients I know that didn’t help. Yesterday Ellen I had a pity party staring at the cases of ensure and poise pads in my room. Just needed some geritol. Hope your “problem” gets solved. Kristi
The new problem is if i go shopping and don’t go to the bathroom in the
store,when I go to put stuff in my car it is standing still,pull the pants
up.crouch a bit.Wait.And HOPE.
And then have the spill.I have a pretty cover with a plastic bag
underneath,ready to throw on my car seat when the river comes.
For me walking for exercise,I need to know where the McDonalds and Tim
Horton’s and gas stations that don’t lock their doors are.And knowing where
the pine trees are in the park to rush behind helps.just so many guys out
with binoculars looking for owls.They get to see a full moon,not hooters.
I thought I was the only one breaking down.I hope you feel better today.
I am in the process of putting a kiddy tent set together .Challenging.Get
stuck in a tube and have to pee.
Kristi-are you coming to Alaska with me,once we beat this thing?. Imagine
the sky and the mountains and the birds.
My wife has had TN for quite a number of years. She is not a fan of medications, and through experience, trial, and error, continues to evolve her philosophy.
One thing she has determined is the battle to live a constantly pain free life might not be in the cards. Accordingly, she looks to keep her life as low stress as possible, but importantly, she has determined there is a level of pain that she is willing to live with. She only turns to medications for those periods when the pain truly becomes intolerable. In this way she both helps reduce the effect of increasing tolerance to the meds, requiring higher and higher doses, but also minimizes negative side effects.
It has not been an easy decision. She’s a fighter, and for years was determined to find out how to live pain free. Her philosophy right now means accepting a degree of pain. In the meantime, she continues to look for non-invasive, long term solutions. She knows this will require patience, as it’s a journey that may take years. And she does have some promising leads right now. When one does not pan out, she moves unto the next. It looks like she might be coming out of a period of remission. Frankly, I think I am having a much more difficult time with that then she is, which i think is a good testament to the place of peace she is coming to.
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I am glad that your wife has found a way of managing the pain.
If I could write my own trial prescriptions I think I would be better off.
Or get advice.Example-the first drug that helped was amitryptiline-but as I increased the dosage I had side effects and was given something else.No one suggested that I try and space the 10mg pills out during the day instead of taking them all at night.Stupid stuff that I would normally think to do-but with the drugs can’t manage.So I have started that myself using my leftovers.Still taking my other stuff but my pain level has gone down 70% from last week
Hi Ellen -
My experience with Trileptal was unabating nausea and stomach pain. I toughed it out for a couple of weeks and it never got any better, so I gave up on that drug…plus I never got any relief from my pain.
my wife is starting to come out of a 3 month remission (she had scrambler therapy treatment, which we think put her into the remission), so she is going to have an opportunity to put into practice her new philosophy. We’ll see how it goes.
It is a b of an illness.Support her no matter which she reacts.So many times I have said I will meditate and reduce the pain but the pain stays in the background while meditating but is magnified afterwards.
Wow this was very uplifting to read. Your wife is amazing. I agree with Ellen that we need to stop and think of how to listen to our own bodies. I think I’m putting words in her mouth but that’s how I understood it. I do believe we have to come to a place of a level of pain that we can tolerate and if it goes beyond that then deal with the mess carefully. I get anxious and start wanting anything to help.
It is hard on the caretakers especially the husband or wife. I commend you and you are inspiring others!!! Who read your post. I hope I made sense. I’m so tired and hurt. Kristi
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The reason for nausea when starting trileptal is a sudden drop in sodium. It does get better if you canget there.Possible helps are taking the medication with a sports drink and increasing your overall fluid intake with sports drinks. Also good is chicken broth (not the low sodium variety)
TJ
Oil comes from different sources. If its not Indica it likley wont work so you need to ask, your prvidor may not know but he should. Indicas contain more terpenes than its sativa relatives. Whether or not its CBD is not as important as the terpenes for sleep… Also it needs to aged as the the real CBN comes from polymerization of the THC (Or so I have been told)
TJ
Sean1,
I’m trying to develop the same philosophy of your wife. I have a lot of admiration for
her way of thinking. I wish the best for her. Please keep us posted. I think we all appreciate some uplifting posts.
Hi TJ
The oil had been working well before and is working well again now.I have had weird reactions to meds.
The old provider for the marijuana oil did not say what kind it is-they just test for the components after and ship it out.
I wanted to try a new provider and the doctor said to get their sativa for sleep-which goes against everything I thought I knew.So I got a sativa oil for night and an indica for day.He wrote it out on the paper I took home.I can always switch them around.I will let people know how they are when they arrive next week.Thanks
Hi Ellen5
This is all so interesting about the oil. TJ sounds so knowledgeable about all this. I had no idea. I need to live in a state that this is legal. I do not know the different laws about oils and the actual marijuana people smoke. I hope it helps you. I’ll be watching. Hope all is well for you Ellen. Goodnight
Hi Kristi
The sativa thing really got me,too.Even the producer says the sativa oil
is good for night time.
I have found the oils to be great for the night.I would not want to have to
be woken up by a fire alarm though.
My experiment with taking the amitryptiline during the day instead of at
night did not work out.My hands are shriveling up in pain at night.I had a
one week break.I hope you are well.
HAPPY VALENTINE’S DAY EVERYONE