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~ Side effects from anti-anxiety meds (Lamictal)~
I am sitting here both relieved and thankful. Ever since I had my RTKR and then the revision, it doesn't hurt at all, but my balance is way off. I have to be extremely careful or I will fall, and some of them have been real hurtful ones......like on the garage floor which is concrete and I landed on my back, hitting my head, into the coffee table sending everything there flying, including my water and tea, walking up a slight hill on some grass, and many, many, more times. I haven't said anything to you all because I was terrified it was something awful .... a brain tumor, Parkinsons ....
Well .... I got the Mayo Clinic Guide to Integrative Medicine and in the section on Stress and Mood Disorders, page 177, it talks about anti-anxiety medications. It says "side effects include unsteadiness, drowsiness, reduced muscle coordination, and problems with balance. These medications can also cause memory problems." I cannot tell you how relieved I was .... these side effects are primarily from the anti-anxiety meds.
I know that taking Lamictal, causes my hands to shake, and for that (they call them essential tremors) I have to take a small dose of propanalol, which is a beta blocker.
Anyhow, if any of you folks are experiencing any of this, as I have been, take heart .... it may not be at all what you think.
abby
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Hi @minajo
I am very sorry to get this news from you and your daughter.
She probably is aggressive because she is not sleeping. This happened to me when I took Lamictal because I also could not sleep. Though it is one of the AEDs with fewer side effects, as I have already mentioned, it can interfere with sleep. Not sleeping was the worst side-effect I have experienced with AEDs. Desperate to get some sleep, I have tried many sleep medications (natural and allopathic medication, acupunture). None of them really helped me to get a better sleep. I could sleep with some allopathic medication, but the sleep was not recovering and I had nightmares. What has helped me to restore my sleep was to get off the AEDs and change to medical cannabis. Yoga nidra practices during the day were very important to me at that time, as 30 minutes of yoga nidra can correspond to up to 3 hours of sleep. But because of autism, this is a yoga practice that perhaps would be difficult for your daughter to do.
Again, if I were in your place, I would ask the doctor about Epidiolex. There is another person in this group (or in another one), who also has a son with epilepsy and autism and got much better with Epidiolex. I can not remember the name she uses in the group, but I do have her personal contacts. If you are interested, I can ask her is she is willing to talk to you. If you are interested, private message me.
My best wishes!
Christine
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2 ReactionsThis is not a sophisticated solution, but maybe your daughter will comply with a daily dose of prunes -- either 5-6 whole or chopped (any brand but I prefer Italian) or 8 oz. juice, for constipation caused by PD, does the trick for me. I also take a fair amount of Lamictal daily for depression with no side effects. I'm plugged into this group because close family members suffer from epilepsy. Challenges with your dear daughter are immense and I wish you my very best.
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3 ReactionsThank you, yes, she's on Lactulose, Miralax, Colace .. too much..
Her behavior escalated after she went into status epilepticus three weeks ago, but has been seizure free since those seizures at 250 mg Lamictal
Her autism complicates so much as she's nonverbal roo so g i. pain can cause behavior too..
Not much sleep even with Melatonin and that makes matters worse
We're hanging in day to day and just hope she gets a break soon, from seizures and her g. i. issues.
Thank you for your support!!
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2 Reactions@minajo
It doesn't sound like the Lamictal is controlling her seizures, especially if she goes into status epilepticus. I also have a history of Status with long term comas. I hope they didn't have to put her into an induced coma to stop her seizures. Was this her first time having status seizures?
Have you mentioned to the doctor about changing, increasing the Lamictal dose or an adjunctive medicine?
Can your daughter communicate, perhaps in some type of distressed behaviour she is having drug side effects?
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2 Reactionswhile I was taking Vimpat, I had severe constipation. What helped me was a daily drink recommended by my family doctor: cole, dry prunes and papaya. It helped me a lot!
Chris (@santosha)
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3 ReactionsHi @minajo
Perhaps your daughter is having this aggressive behavior because she can not sleep well. As I mentioned in another post, insomnia was the worst side effect I had while taking Lamictal. I also became aggressive during the period of insomnia.
Chris (@santosha)
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2 ReactionsI want to try your concoction of prunes and papaya because I like variety and I always look for natural or organic remedies. Many thanks!
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3 ReactionsYes, big issue with autism is sleep problems.. rhen sleep deprivation can lead to seizures.. she has been on 10 mg Melatonin, last year a dr put her on Trazadone which caused things to get worse.. had to get her off ..
Course being 48 now perimenopause , soon menopause.. she is on Prednisone ..
Her care home provider is against the marijuana rx as is the neuro..
Her autism/ neuro dr recently discharged her as he wasn't happy we took her off Dilantin( many problems with blood levels, seizures after 10 years on it) said it caused the status epilepticus so now isn't even addressing her autism..
So now i just have her epileptologist who ordered zonisanide, ( caused severe constipation, impaction) now lamictal.. but she won't handle the behavior meds.. really quite a mess and so i can only hooe lamictal will work!
Thank you for all your support..
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2 ReactionsMinajo,
I agree with @jakedduck1, Lamictal does not seem to be working well for her, unfortunately.
There are still many doctors who are against medical cannabis because they have not studied the endocannabinoid system. Epidiolex (pure CBD) is a medication that was approved by the FDA.
It seems that the medications your daughter has been and is on are bringing her more harm than benefits, just like it happened to me. If I would be in your situation, I would check for a second opinion. This friend whose son is autistic and also has epilepsy went to Mayo Clinic for a second opinion, having Epidiolex been prescribed to her son. It changed her life as well as her son's life. I have sent you her e-mail in a private message in case you are willing to exchange experiences with her.
Chris (@santosha)
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2 ReactionsMy daughter is at her target dose 300 mg lamictal and we will try to get lab level done this Monday, she will need Ativan as of course the side effects known for drug insomnia and aggressiveness are present
Her epileptologist states we knew we'd have issues but to keep going rill target dose
She suggested Klonipin for sleep but daughter did awful on Trazadone..
Shes on 10 melatonin but i wonder if Valerian root could be added? Some supplement instead of another addictive controlled med? 😵💫
She wouldn't get in bed last night, care home has rules!
She fell asleep in big comfy chair, i said let her just get sleep, no matter where
Sometimes my. hands tied with carehome as with the medical cannabis, they are against it.. oh my..
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