Omg!!! I've been on Gabepentin, 900 mg a day for 12 months! And Lamictal 150mg a day. Vistroyl 200mg a day, was on Effexor-depress too. Had severe sleep paralysis!! Terrifying!!! Off that, down to 1 300mg. Gabepintin, 50mg lamictal, 50mg vistroyl, going off all three completely! I'm 59, soon to be 60! I suffer with Fibromyalgia, Neuralgia, severe neck, back nerve, disc damage due to being hit twice by drunk drivers! Traumatic Brain injury at age 12! I suffer with RA as well! My hair is so thin, made my depression 100x worse!
I cry everyday!!! Hate to look in mirror! Scalp shows! Restless leh syndrome. Severe stroke on left side after 6 mo On all this med!!!!
Confusion, lost feeling, can't think clearly! Afraid to drive. And when I do, all of a sudden, nothing looks familiar!!!! Scares me to death! And I see that same scenery regularly! I fall a lot, due to off balance, equilibrium issues! Vision issues! Omg... on and On!
The side effects going off... can't sleep... losing weight... no appetite! Sleep deprived. Weak. Pain. But I'd rather go thru all this to get all out of my system... and try to be outside more, fill my awake time with brain challenging activities. Exercise, meditation, yoga, aromatherapy, music, to relax, to sleep... hot tea, pure cherry juice before bed, is excellent sleep inducer. Not cheap. But worth it. Very healthy! Try melatonin vitamins.
Definetly seeking lawsuit against "Gabepintin " drug, manufacturers!!!! Help!!! So sorry for all of you going thru this!!!
Should start my own wig company for people like us who've lost our precious hair!!!! Ty!
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Ntmnt2balne
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Do you have anyone around you to help? What does your doctor say, and going off all 3 meds at the SAME time is asking for misery. Should take things a bit slower, I know it is hard, all of them have to be weaned. Are you off the Effexor now? That is an SSRI antidepressant, well known to make RLS worse. Eventually, things will level out, hopefully, but going off all those meds at once, does your doctor know?
I haven't gone off all at once. Weaning off... just down to one of each... then hopefully every other day... and ... yes, my Dr. Knows, she has put me in the behavioral health unit 3 times, when I went for my appt., had security guard come from hospital, which is next door. She is a psychiatrist. But over medicated me starting from Jan. 2016 to now...
I'm diagnosed, BPD, PTSD, OCD'S, Bi-Polar Manic, chronic depression, Panic Anxiety Disorder, .... Omg! And I'm a SURVIVOR! This came about due to my mom not wanting me since birth! Because I was a girl! Left me with neighbors, from 1+ yrs old.. said be back few hrs, didn't come back for days, weeks, months...
Abandonment Syndrome , my bio dad, started molesting me, everyday from age 4-9!
This is what's wrong with the world!!! Children are innocent, not protected. Cherished! Why??? I am worthy to be loved! Have a happy life! Not ptsd!!!
Yours is truly a terribly sad story. And that is an understatement. I do hope you now have people around you who love you honestly and unconditionally. Bad starts in life like yours will probably always leave a hole in your heart. But I hope your survivor’s spirit will always win and make you look at the positive things in your life. However small they may be. Like this forum; we are here to listen, support and provide information.
I get the impression your are not only overmedicated, but also overdiagnosed. That doesn’t seem helpful. You apparently know what was and has been wrong. Now you need to make your life a good as possible. I hope you will find some help for that here.
Well said, nightdancer. And, Nt...etc, know that we are here to listen to you, in bad and good times. And loads and loads of good advice to browse through.
Geeze - that's a lot of meds. My old girlfriend had nightmarish withdrawal from Effexor and she's on it to this day. That said I had another friend on a large dose and she got off using a Prozac Bridge - you use the Prozac to help with the withdrawal from Effexor then it's relatively easy to get off the Prozac. RLS is associated with CTEs - one more complex biochemistry reaction in the brain. I just read of some supplements to help with CTE (concussion syndrome) - chief of which is Fish Oil - also an enzyme therapy called Serrapeptase - fascinating, read more here... earthclinic.com/cures/chron...
I at least hope your hair is coming back since you are off the Gabapentin. I only took it for a brief time until I noticed it was making my hair fall out like crazy. I guess this does not happen to everybody. I am so sorry for all your troubles.
Ty! Well, not sure if it's coming back in so much. Top is so thin. Can see my scalp when I try to style like I use to. Even tried teasing it. Omg. That was never a thought before Gabepentin. I slowly took myself off it. I was on 900mg, 3x300 a day. I had been on 900mg about 10 months. Been off all since 3/18. So over a year. Praise God.
But the damage was done.
I'm so angry, drug companies. Can cause such damage to innocent people. And that Dr.s dont even tell us side effects.
The makers of Gabepentin needs to have to pay, compensate. Even provide, pay for the PTSD, TRAUMA, this drug has caused. Emotional damage. Shame. Not wanting to go out of my house. Hurts so much to have lost so much of my hair.
Defintely a LAWSUIT!! My Before and after pictures, tell the damage, physically, emotionally, Pyschologically. I demand justice. We all need to ban together. Petition for every user, past, present, of this horrific damages this drug has done.
If "WEN", hair care products, by CHAZ DEAN, also causes major hair loss. There was a mutiny million $ settlement. I used that product for 4 yrs. Then stopped, when this lawsuit came about.
And I'm sure, The Use , prescribed Gabepentin is 1,000x worse!!
All in my prayers, for you that are suffering, have, Dr.s, get a $ kickback from these drugs companies, that's why they over prescribe, over Medicare, without caring about side effects.
Praying for Strength, for those that are trying to ween off of it. Be Strong, diligent. Pray. You CAN DO IT!! I'm in, for lawsuit. I'll be checking with my State Legislature, I live in Jefferson City, Capital, of Missouri.
PLease respond back. Also I suffer with RLS, from this drug!! And to top it off, those are my initials!😱😇🙏🤝💜👵💊😳🤯👴😵😭😭😡🤬
Can't believe those are your initials! Funny but not really. Mine are LSD, so we both have interesting ones. But don't tease your hair - that is weakening to it - just comb it over to the side. It will hide the scalp better that way.
I started taking iron after quitting the gabapentin, and after about 10-12 months, my hair got stronger and started filling in again - in addition, most important, to helping my RLS greatly. It was a very severe case, but I still have bad insomnia.
I'm now going to add magnesium and see if that helps me sleep better.
Best of strength to you with everything you are trying to accomplish!
Lol. My middle name is Lynn! I love Allentown!!! Beautiful there, stones houses galore. Rich in history. Antique Capital of the world !
Wow!
I hear you on the Insomnia. Chronic. My circumkadum body clock, completely opposite. No normality. Dr tried effector, amitriptyline, trazodone, few others. Had Sleep Paralysis, thought I had a demon in my house. Terrifying, eyes open, cant scream, cant move, once I could move, I was so afraid to fall asleep, didnt know what it was. Omg!
I was born w major iron, and calcium deleted from my body. I was born when I was 3 mos., early. 2.6lbs. 1958. Incubator back then.
Always anemic. I'll try the iron. I take centrum silver w xtra iron. And I take calcium. Collagen w xtra C. Probiotic w melatonin.
So.... I'll be 61, July 1st. Yay! Survivor!!!! Fibromyalgia Warrior, Neuralgia Warrior. 4 massive strokes. Traumatic Brain Injury @ 12, drunk driver hit me and my brother on our bike. I was in coma 4 mis. Brother dragged on pavement, right side from face down skin gone. No broken bones between us. God was there.. 2 heart attacks . 31, 40. Strokes 22, 37, 49, 59. I'm still here. This last stroke the worst. Brain blank spots. No info there. Made me feel very fragile. On tons of blood thinners.
Hi I’m Jan just wanted to say what an amazing testimony you have and you still have faith!! God bless you for sharing your truth you have given the courage to keep going - thank you 🙏❤️🙏❤️🙏❤️
You are a indomitable spirit. If you are taking blood thinners it might be worth considering using dipyridamole (if you aren't on it already) as there is a study which found it helpful for rls sufferers so it could potentially perform a dual function for you.
Wow Roseanna, you sure are a survivor! I can't imagine how one comes through everything that you described, except the end of your message says it all. You are a true fighter. I love that spirit and also have to have a major positive attitude to keep going.
I'm 66 and have multiple conditions, among them Essential Tremor, which is like a cousin to Parkinson's. It's very bad in my voice and also my left arm and less so in my right. Also Spasmodic Dysphonia in my voice, (whiich causes a raspy sound) then a condition in my eyes - blepharitis - which makes them super sensitive to light, ultra high blood pressure, and this raging case of RLS. A freak accident in my 30's left me with a right ankle that is badly twisted, so I walk with a limp which is getting painful as I age. Other details too numerous to mention. I take 12 prescriptions now, plus various vitamins (the iron etc.) and just keeping all those things going is a part-time job!
But I have a great church and a few nice friends. Enjoy my city of Allentown - glad you do too - and used to own a lot of those beautiful antiques you mention. But I sold my big home and downsized, so almost all the antiques are gone. An apartment satisfies me now and of course it's lots less work.
I'm waiting now for the magnesium to arrive. Anxious to see if it will help me sleep. I've tried so many things, but nothing has gotten me past the 4 to 5 maximum hours I get nightly - and those are the good nights! But I was doing worse than that before I started taking the iron, because like you, I always ran anemic, even in childhood. The iron has definitely helped quiet the RLS but not the insomnia.
Maybe it will help you too. Solidarity in strength.
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Should take things a bit slower, I know it is hard, all of them have to be weaned. Are you off the Effexor now? That is an SSRI antidepressant, well known to make RLS worse. Eventually, things will level out, hopefully, but going off all those meds at once, does your doctor know?
RLS really getting me down
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