Stopping Medication
Does anyone ever feel as though they would prefer to live without medication?
Sometimes I don't take it because I enjoy sleeping. It's like taking a vaca. I don't get rebound symptoms or night terrors or hallucinations anymore. I take Adderall.
That's interesting! I might give that a try! Thanks for the tip! Take care, Iris xxx
I never thought I would be able to live without medication until I was forced to come off my stimulants because of a heart problem. I have met two people who have. Both are retired and have less obligations and commitments than when they were younger. As a result, they can sleep when they want to.
I look forward to being at that stage in my life when I will be able to have a mire peaceful and stress free life.
(Team Member)Share the sentiment hun! Thanks for reading! xxxx
I used to think this. My doctor of 20 years retired last year and I’ve had a hard time finding another doctor. Last October I went through the worst withdrawals and I struggle everyday to stay focused and my 7am-3pm job. I work in a kitchen so there are plenty of risks but the bills need to be paid. I’ve never had much of a mental health issues but since being off my meds I’ve noticed an increase in anxiety, short temper, insomnia and depression. Oh my gosh! Working in a kitchen is definitely a dangerous job for those of us with narcolepsy! Have you worked with this for a long time? Have you had any problems? I can completely relate to going through withdrawal when you go off the meds, it was one of the worst periods of my life! And I also completely understand what you mean about the mental health issues. I'm the same! Have always been quite a balanced, calm person but this year I experienced periods of heavy anxiety for no reason, insomnia has become my new normal, and I've had some very bad bouts of (what I believe was) depression.
It's so hard to navigate a lot of times unfortunately.
Thanks so much for sharing you story! I really appreciate it!
Hope to hear from you!
Iris xxxI hope you find another doctor soon . Insomnia is hard on me too. At the moment I'm off some of my meds. I'm not sure how this is contributing to my insomnia though.
Looking forward to hear of improvement in your situation.
(Team Member)
I have been medication free for a while because of struggles getting access to my prescription. I think it depends on what meds. I have had issues with the vast majority having worse side effects than the benefits (especially stimulants and Xyrem when I had the option) and decided to come off anything that was supposed to help with sleepiness (Pitolisant was also awful!), they all caused all manner of varying absolutely horrific side effects! I'm about to go back on clomipramine (helps with cataplexy, hallucinations and nightmares) because personally it's the only medication that has had better benefits than side effects but it was starting to wear off before I came off it and I have just been told that I will have to wait 5 to 7 years to see a neurologist (no joke!) so I might end up being med free again. It's really hard to weigh up when you have the choice though and there's really no one size fits all with them! I hope you find the right balance for you and sending solidarity! Wishing everyone on this thread the best at finding what works for them and sending support to everyone struggling with this and who are struggling getting access to meds as well! Best Wishes, Lauren (Team Member)
Aww thank you so much hun! I actually have never heard of clomipramine. I'm going to check it out! So wait you have to wait 5 to 7 years to get the prescription or just a normal consultation with a neurologist??
Jesus, I thought mine was bad! I've been waiting since November 2020 for my sleep study in London...apparently should be getting scheduled soon hopefully but still ridiculous! 2 and half years!!
Thanks so much for sharing hun...it really can be such a long and frustrating road just to find the right medication and even when you have it's not guaranteed to actually last.
Thanks for reading and I wish everyone well too!! Take care, Iris xxx
