Hi all,
I started new meds last night and my RLS was still for the first night in a solid month!
But.....i still couldn't sleep because i.kept anticipating that the RLS was coming but never did. I'm calling it rls ptsd.
Anyone else have this 'issue'. I'm still grateful for a night off with my legs.
Hello!
Unfortunately yes. Both my mom and I are convinced that I have some PTSD going on. The traumatic event was in 2015 when I augmented and got very little sleep for about 7 months on end. Now, every time I get even the slightest bit tired during the day I start panicking inside. Sometimes I start to hyperventilate and my chest feels heavy, almost like lots of pressure is being put on it. My mind races with all the awful thoughts and emotions of that time. It is not fun at all.
Thanks for writing this. I'm over the worst, off pramipexole, finally have med combo that works morphine 12 hour extended release 30 mg, plus 300 mg gabapentin. But I also begin to panic sometimes with the memory of almost 7 months when experimenting and failing.
Congrats on getting through it!!!! I barely made it through mine, which I believe is a big part of the reason why I react so strongly.
The reactions we now have are awful, aren't they? What do you do to calm yourself down? I go someplace quiet, put my headphones on, and enjoy the music. I also have a puzzle book that I work through and I cross stitch.
I cry a little and then do something that really engages me, like a podcast I love or reading a book, I do a lot of audio books or talking with a friend. I know that this stress reaction will fade over time. My doctor encouraged me to give up my morning coffee caffeine source, so now I only have decaf. This week ive been sleeping 9 hours a night, might be partly that i'm on vacation. Or maybe it is catching up on sleep lost during all the experiment time.
Wow, that's great with the sleep this week! I hope it continues!
What do you like to read? I like mysteries.
Enjoy your vacation! I am on vacation as well; this is my last day. The only upside to that is getting to see my husband on the other end (he had to go back early)!
I suffer from PTSD after suffering from defib after heart stopped on emergency room table. My new neuro wants me off prami but not sure what she has in mind yet. I have been relying on lavender to shortcut my hyperventilating. I have a lavender nasal inhaler, an essential oil diffuser to use with the brand name "Good Nite" (Nature's Truth company) essential oils: lavender, tangerine, bergamot, cypress, and a few others. Diffusers for rose oil and lavender. I am surprised - it really works. I am an old man - 69 - and not given to 'natural' stuff. But I am using Tea Tree Oil on my diabetic neuropathy pain in my feet all with good results so far. But I start breathing hard like I am going to teeter into hyperventilating and inhale a few whiffs of lavender and it does slow it down. I really have to concentrate on breathing - in thru the nose on count of 3 and out thru the mouth on count of 4. THAT takes a lot of work at first when my mind is about to start spinning like a top but I am looking to other natural stuff to add to my RLS regimen, iron, magnesium, and others noted on this site.
Keep on Keeping On
Thanks for the reply!🙂
I too rely on lavendar and breathing. I do 4-7-8 (breath in to a count of 4, hold for 7, and let out to a count of 8) 3 times. This is a method of breathing introduced by Dr. Andrew Weil. It does wonders for me! I go to my room, etc. where there are no disturbances, do this, then put my headphones on and listen to music. I also go to sleep if I can.
I had to hang up on my friend the other day because panic was setting in. We were trying to arrange a get-together which me managed, but proved to be harder than it should have been. I was tired and didn’t want to think, then, to make matters worse, I started thinking of my awful time when I was a zombie for those 7 months and had to think despite that. I had to go on with life and couldn’t very well shut down. That started my panic, so I had to hang up (I quickly told her that I was hanging up). Awful!!!!
It recent happened when I was holding my little niece. I had to quickly put her down, make sure mom was near, and go upstairs to rest. It’s awful when it’s so bad as to interfere with family time!
My sister & her husband drove 1 1/2 hrs for a visit. We walked out to go to a restaurant, I got into our car and bam!!! One hit. Had to quickstep back into the apartment. I felt really bad for the time they wasted. But there was nothing I could do about it. I finally got some meds to help head off, hydroxyzine pamoate (50 mg). Has done wonders - for the three times I taken it. It is for as needed but it is encouraging. Keep on keepin on (Vietnam War soldier slang to be able to bear it)
I knew that sounded familiar!!! The dad of the friend I'm talking about is a Vietnam War vet. Are you one too?
Oh man, so sorry! It's so frustrating!! Now that I'm back home (my attacks were while visiting family in the States; flew back home to Norway a couple days ago) I saw my neurologist who was baffled that I was talking about panic attacks when Lyrica is supposed to help with anxiety. My response was that, in hindsight, vacation was probably not the best time to start Lyrica because of the anxiety-induced situation I was constantly in with so many people. I don't have to deal with that over here since it's just me and my husband, so I'm expecting my attacks to gradually diminish.
Yes I am A Vietnam era Vet. Hopefully your symptoms will calm down. I sure would like to see Norway. It looks so great on TV. I have an appointment with new neurologist on the 30th. I am going have to get off pramipexole. Hopefully she has a whiz bang med to go on. Great chatting. If ever you need my email is: Craig.martineau@gmail.com.
Nice chatting with you as well. Good luck with your appointment!!
Stress is a major factor in not being able to get to sleep.
In the short term it would be advisable to try some shortacting sleeping pills, such as Zolpidem.
Long term, try practising mindfulness.
It takes time but well worth it.
Sleep music on a timer can help some people.
Good luck.
What meds Dogdoo?
I am taking cymbalta 60mg and remeron 15mg.
Last night was awful with the legs, i think the remeron isn't agreeing with me and i know both meds are on the no no list.
So frustrating. I maybe slept fitfully for 2 hours total last night, i was awake for nearly 24 hours straight. I desperately need sleep.
That is not good news. Those meds are not helpful. And Cymbalta is one of the most questionable drugs on the planet, and it can cause insomnia. (I took Cymbalta for a few years, it made me very, very sick).
And why two?
The anti-depressants listed as safe by the RLS Foundation are Wellbutrin, Trazodone, and Lamotrigine, amongst others.
Please change - your situation may not alter otherwise.
I definitely had PTSD after horrible Augmentation and withdrawal from Ropinirole. It took me about a year to deal with it. Lots of yoga and listening to a calming mindfulness tape every night helped me enormously. I now know stress triggers my RLS so avoid as much as possible.
Parminter has given you excellent advice- avoid the meds which make RLS worse & practise mindfulness as Jess advises. That will improve your situation enormously.
I’m actually afraid to go to bed most nights cuz I’m afraid the legs will start up.
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