Does anyone else have feelings of paranoia, or suicide whilst on Pregabalin?
It isn't there all the time with me (otherwise I'd see the GP), but when the feelings come...they are very, very strong. and all consuming.
Generally Pregabalin has been a good drug for me, I've been on it for a year and a half now (225mg per day), and there was a vast improvement with the fibro/ME symptoms. But lately I seem to be suffering with return of symptoms, plus these other feelings.
I'm loathe to give up on the drug as life was very restricted before it, and I don't want to go back to being house/bedbound again, but I'm feeling scared and vunerable at the moment.
I'd appreciate any feedback please.
I wish I could help but, I've only used it for three months. I occasionally get a little "weird" feeling, (i.e. strange feelings that are momentary like paranoia) I take Sertraline, (Zoloft) for anxiety which may help control the "paranoid" feelings, heaven forbid the lyrica should make me paranoid, I get enough of that without it. I have noticed it takes more zoloft these days since starting lyrica to keep my anxiety in check. I have some of the more common side effects now at 225 mg/day bloated feeling, little trouble catching a deep breath when sleeping, (which REALLY triggers a panic attack) weird dreams, (more negative than usual) and longer sleeping periods. The pain relief though is at least 75 percent better, with some days better than others. Talk to a GP about an SSRI like zoloft, (or better cymbalta) could be your one of us with a serotonin issue, which can cause all kinds of issues in the balance of neuro-transmitters, and mess seriously with your perception of reality, and a real pain in the ass with anxiety/paranoia/depression and suicidal ideation.
Good Luck, and remember, the issues of paranoia/suicidal ideation can be handled with some really excellent drugs today, that don't make you a zombie...
grey 0417...Thankyou very much indeed for your reply.
You started by saying 'I wish I could help'...well you have! The advice you gave was excellent. I am reluctant to go on any more drugs, but life isn't pleasant at the moment, so I may bite the bullet, and go to th GP and discuss these issues (more talk about myself..I hate it!).
My thought patterns are all over the place, plus with the ME and 'fibro fog' seems to make even small decsions seem like climbing a mountain. But I appreciate your advice and will act on it.
I've forgotten what it's like to think like a 'normal' person, I tend to bluff my way through each day and hope for the best, which on reflection isn't good.
I wish you well with your health/life etc. Thanks again for taking the time, kind regards H
Always glad to help Heather, we're all slipping on the same slope, it's nice sometimes when somebody takes the time to look back and pull on the person behind them. It may sound funny to you but I actually work in an E.R. in the States, and, you cannot believe the level of human depravity I see every day. You sound like you really want to give it a go, which is the number one reason you have an excellent chance of beating your issues. I deal with methheads/bathsalt freaks/narcotic drug abusers every day, (the latest is spraying raid bug spray on a window screen, taking the dried chemical and shooting it up, I thank God every day that Krokodil hasn't hit the states so far.
My point is, your chance for health and hapiness is directly related to your attitude to see it through, which I believe you do, you're just a little discouraged.
Remember: the mind controls the body, I've seen patients with nearly the exact same pain and depression/anxiety or suicidal thoughts, you can almost always tell even after a short visit in the E.R. who's gonna win and who's going to circle the drain.
Get the meds and leave behind any fear you may have, (it's the most worthless thought/emotion you can cultivate.)
I'am getting off the soapbox now, I just wanted you to know that I'am there too, and I see it in many others as well every day, (hard to think beyond pain isn't it? gotta fight it with meds, faith and intellect.)
Don't give up!
Grey....
Well Grey0417...you've done it again...hit the nail on the head so to speak! You seem very intuitive, obvioisly comes from experience. Though, as we know, not everyone is so generous in their thinking and attitude towards others. So, once again...I thank you very much.
I wondered if you were American, because I took your advice and saw a GP yesterday. I mentioned the drug Zoloft, and straight away she said it was an American drug.
She's trying me with a different anti depressant, plus I'm booked in to see someone to 'talk to' next week. Don't really want to say much more because this site is open to anyone that wants to read it. Suffice to say that I wish more people would be so open and honest with their generous opinions, I think it would help enormously. There must be loads of people out there trying to manage on their own.
All the best to you Grey. Very kind regards H
Yes, I am American, (we're #1 on medical spending, #25 in health care quality, sheesh what a world.)
Yes, Zoloft is an american drug from Pfizer, (which is actually multinational) Pfizer produces Zoloft, Lipitor, Celebrex, Zithromax, Lyrica, (Pregabalin) and my favorite, "Viagra" (LOL, just kidding)
I have to ask, at what level has your me/cfs stabilized, or has it?
Narcotics don't offer much in the way of any long term gain, other than make you calm and somewhat more comfortable for the short term.
There is a very old drug called Amitriptyline, an old tricyclic antidepressent, that also helps in your case, low cost, and minimal side effects, (just watch out when adding this to other antidepressents as the cumulative effects may case a "Serotonin Storm" which can case short term psychosis and other issues.
I forgot to mention I also have worked in a pharmacy, kinda been round prescription meds for a while and their uses.
Good luck H. and remember there is always somwone out there for you, on earth and above
Grey0417
Hello Grey
Thanks for info yesterday, very interesting. You definitely sound like you know your stuff!
I'm not feeling 100% at the moment, a combination of new meds and ME, but just wanted to answer your question. ME/CFS is better than when I first became ill 6 years ago (thanks to good ol' Pregabalin...great thanks to our NHS!). I'm at the stage where on a 'good day' I can manage about 2 hours of activity.
I wonder how ME/CFS is viewed in America? There isn't a great deal of useful help here from the medical profession, and still many who think it's 'all in the head'. My view is that everything is in the head, our days are full of thoughts...and yes, of course what goes on in the mind is connected to the body, so will have an effect. But this condition is very, very real.
I'm also curious as to why there haven't been any other fellow suffers joining in this conversation. Seems odd to me, because the literature says there's 1,000's of us (as an estimate, 250 - 300,000).
So if there is anyone else out there reading this, and feeling like they're the only ones suffering, I hope they join in the conversation too.
All the best Grey, sending you lots of love and light. H
Older Doctors in the states consider fibro/me as a dodge to get on disability, "it's all in your head" defintely applies. Younger Doctgors recognize fibro/me as a real and chronic disease, with many effects on quality of life and emotional well being, but the mounting evidence is forcing even the old guard to acknowledge fibro/me as legitimate.
I glad your condition is stable, fibri/me is accumulative liken to rheumatoid arthritis, once the damage is done all you can do is minimize furthur damage. I am distressed that your level of daily activity is so short, with my diabetic neuropathy I know how the bed can become a prison sentence.
I had to decrease my Lyrica to 75mg/twice daily as 225mg was just making me to fuzzy for normal activity, (it really started to affect my short term memory) but I'am still getting significant pain relief from before Lyrica, so don't mind a litlle confusion now and then, (hey, I'am american, aren't we suppose to be confused?)
All of you sufferers out there join in, express your opinion, share info, or just blow off some steam, it's an open forum !
sending your warm thoughts and hope...Grey...
Heather:
I forgot to mention a serious problem with Pregabalin, I'am suffering a very noticable loss of memory, both long term and short term, have you had this issue?
This last week in conversation with others I often cannot express myself in the words in which I wish to speak, I'am well educated and articulate in speech as a rule, but this has completely failed me at times, and I must make excuses for not being able to formulate my thoughts in a rational/smooth manner unless typing like I am now, (which is a constant delete/backspace exercise.) I can format my thoughts, just not at anywhere near the rate of normal conversation, and stumble constantly with the correct wording in which I wish to speak.
Have you had this issue with Pregabalin?
This is a new one to me, and kinda scary, as, I rely on my powers of speech and thought in dealing with others in my profession of higher learning.
Love and light back to you....Grey....
Hello Grey, nice to hear from you again.
Yes, most definitely it's a massive issue with memory/retrieval problems. We just call it 'fibro/fog', which , as you know is just one of the cognitive problems that goes with ME and fibromyalgia. I too previously never had a problem talking/spelling/studying/sorting problems etc...it's not the case now!
Interestlingly though, I''ve these issues way before I started on Pregabalin (though it's much worse now), so I wonder if it's a problem that comes with a chronic condition? Possibly anything were pain takes over your thoughts? Can't even think how to explain this.
This will be a short reply because it's one of those days where it's nearly impossible to think, let alone type. And there's no spell check whilst on the forum, so it's back and forth etc etc! I can barely function, but wanted to reply.
Love H
No worries Heather, actually your spelling and grammer is far above those who normally use a forum, you must be very well read and educated, and yes, I'am having the "FOG" today as well, pains is ok, but only after a few hydrocodones which I cannot take at work.
Love back at you....sleep well and I'll send a prayer your way, just wait for the answer....
Grey...
Heather,
The "FOG" has lifted today, but the memory issues are increasing, also numbness in my right arm and tingling. I hate this side effect, I'am a musician on my spare time, (go to youtube and look for my channel "shadowfax0417" and the song "Riding the Storm Out" look for the guy in shorts and a polo style shirt, that's me.) I can't remember the music or the chords/notes without having to stop repeatedly.
The pain has almost decreased by 80 percent, but, I ask myself am I still the person I was?
What price do we pay for the decrease in pain? I've spent a large part of my life in the learning of music, is it worth the loss?
Love to you, and peace and happiness
Grey....
Hello Grey
Glad the 'fog' has lifted...one less thing eh!
Re your numb/tingly right arm, I really don't know if it's a side effect of Pregabalin or not, could it be part of your original condition? With your medical background, I suppose there's no one better than you who knows this stuff.
All I can say is that I too get painful arms, can't exactly put it into words..but very painful to the point of not being able to use them, kind of nerve pain, deep aching, and generally wanting to rip it off from the socket (ok slight exageration, but you get my drift?!). It happens in both arms, though thankfully, as yet, not at the same time!
I feel the same as you in as far as how much of my personality has disappeared in the last 6 years. It seems it's always going to be a juggling act with pain/meds etc. Have you tried other meds for your pain? If so, how did you get on with any side effects?
Listen to me...asking you this stuff...this is your job!! All I know is that life is altered with a chronic condition, and it takes a long time to adjust. It's like a bereavement in a way.
Enough for now. Chin up. Love H
Oh by the way, someone else responded to a Pregabalin question, but it came up on a different page, which is a shame because you may have more luck with another opinion?
I'll look at youtube later.
Dear Lady H.
I fear that I may have given you a false impression of myself. My medical/pharmacology training is not that extensive. In former years I was an aircraft weapons, and nuclear weapons specialist, (in the military) after that I did robotics and CAD/CAM work in the electronics industry, after that I did an eight year stint as an operations manager for Greyhound Bus Lines.
I know this is isn't a personal forum, just wanted to get the facts straight.
I so damn tired, the Lyrica is messing with me big time, I just want to pull the blankets over my head and tell the world to leave me alone, I'am hoping this is just a side effect, (short term) but I'am struggling.
I miss the ability to be me again, just as you have said, it seems that the pain and the Lyrica have taken a large part of me, is the reduction in pain an equal trade-off for losing yourself? and that which you love to do? (my music)
I will not lose faith no matter what, and I will never give in, it's not in my nature, it's just at this moment I want to scream and punch in the walls, which is not in my nature.
Sorry to vent, I am normally not like this, and feel very vunerable.
Love to you H. and a wish for better days for both of us.
H.
I forgot, (again) to ask if you're in the U.K. or Scotland/Wales/Ireland (you mentioned an NHS)
I live in northern Idaho in the states in a very nice rural community, lots of trees and mountains.
Love, Grey....
BTW I'am Scottish by birth, 100 percent decendant of Highlanders.
Hello Grey
Sorry to hear that you're struggling so much with the side effects. I feel that fatigue every day with the ME, and forget how hard it is for other people to cope with.
I can't offer much comfort I'm afraid, other than to say I understand how you feel. You see...it's no comfort at all is it?!! Seriously though, it's taken me years to accept this as part of my life, and I appreciate how difficult it is for you, especially as you have work and a social life to factor in.
Maybe you should pay a visit to your doctor (or even phone for advice), you never know, there may be something else you can take that doesn't make you feel this way. We started this conversation with asking about paranoia and Pregabalin, so mustn't forget that it's a side effect, and not a personality thing.
Good luck with it, chin up. Love H
ps Even though Heather is a Scottish name, I'm English
Heather:
Sorry I vented, a very bad day indeed. Like you it waxes and wanes, some days good, some bad. I don't really want to say this, (because of your struggle) but, I awoke this morning feeling much better, and more positive than in a while. I've noticed since we started talking in this forum that I get depressed, and even have had suicidal ideation at times, very unlike me, but, it makes me understand how you feel at times, I've increased my zoloft to counteract these gray periods, and it is working.
I'll toss this in as a topic for possible viewers of this conversation, and as well for you and your pain. I have in the past used Marijuana for my pain, it surpassed all other pain medication I've used, (which are many)
In my current position I cannot use it as we are subject to the most intense drug screens possible, (having access to morphine/dilaudid/vicodin etc.) It was about three years ago that my previous job allowed the use of Marijuana, and I used it daily, (but, just as with any other drug, safely and with prudence.) Have you ever tried this? My friends turned me on to this, (using an old drug reference) and I would still use it if not for my job.
Lots of love and positive thoughts for you....Grey....
BTW, English girls accents are the hottest !!! Grey....
H.
Had some unusual side effects from Lyrica, short, but intense hallucinations for a brief period upon awakening, scary as hell, and totally freaked me out, (animals in the air attacking me.) Let me say I was extremely shaken.
I don't know if this was Lyrica, or other drugs I take, But I sure as hell don't like it, (thankfully only one episode.)
On the positive side, my pain continues to decrease at a rapid rate, seems I've hit a set point for this drug, and hopefully continues.
How are you?
Grey....)
Hello Grey
No, I don't have hallucinations on Pregabalin, but I did have them every night for years whilst I was on Amitriptyline. Yes, they are very scary, but once you get over the shock of it and realise the animals,or whatever it may be, aren't actually real (and your heart rate goes back to normal after the shock!)...then hopefully you'll feel better, and get used to them.
Glad to hear that your pain has eased.
Thanks for asking, but I'm not so good at the moment, so I'm not really up to replying to emails for a while.
I wish you well, and hope that you get some other people to join in this discussion.
All the best, H