Lyrica

[helenlegs 11]

Agree Calluna,
As you have the 25mgs, I would start with those Kathy just as Calluna said and go from there. Give it a good try, as mentioned the side effects are fairly quick to dissipate. I'm up to 75mgs a day. WooHoo! . . . not really, so I will be taking this up too. I realised that my ' bonkersness' was because I had forgotten my cymbalta 2 days in a row. Crying at the news reminded me, as this is what happened similarly when I decided to stop taking them before, I have also realised that they help
I read somewhere recently that people often don't realise that a medication is making a positive difference until they stop taking it, although you do wonder what any with drawl side effect may be going on to influence that decision. That is probably over complicating things. As mentioned it is all such a balance which does need monitoring.
So glad for your input Calluna, very knowledgeable and sensible.

[calluna]

Hah I don't feel very knowledgeable and sensible right now, I feel stupid and very spaced out. Perhaps the right word is drugged.

I did tell the GP I would give this a good try at 200mg. But with the dose this high, and I think it is important to bear in mind particularly as I am taking it together with 100mg topiramate, it seems that each time I take the dose up, the side effects take longer to settle down. It was different at low doses. Having a lot of problems typing now -making lots of mistakes - previous post was earlier this morning, just before I took my morning dose. Felt ok then, not stupid. I took the dose up by just 25mg on Friday last week, so today isday 8 at this level. Will I stick it through the weekend, I don't know... maybe... Also I have gained 4lb in weight. Grrrr.

However must admit that pain relief is absolutely brilliant. Just the occasional tiny little twinge that I can just feel, to remind me it is still there in the background and hasn't gone away. When I recall the tearing cutting dreadful pain of February, that 40mg of oxycodone was not dealing with - incredible! That is so valuable. I want to keep this pain relief - of course! - I need to find a level that works in terms of pain relief and also me not being spaced out of my head. (And not gaining weight.)

Helen, my symapthies with the bonkersness.

Kathy, let us know what you decide, yes?

[kathyd]

Hi Calluna and Helen
Its nice to talk to you both about this med and get your feedback and opinions. Calluna it sounds wonderful the pain control you're feeling with your meds--hope the side effects wear off.
Tho my pain doc rx'd 75mg Im going to start it again at 25mg ( I have these pills) and work up. I have been having such horrible retention and bladder ( God Knows why?) and I haven't even started the Lyrica yet. I cut back on the Clonepin I took at bedtime last night and I still had retention... so maybe its not meds doing it.
Based on my history I can never tell if its a med, a food , a result of the illness itself, or my anxiety fear/ habitual bracing from the trauma of years of pain and constant searching etc.
I am actually breathless a lot from fear (like panicked) but the pain levels are so high each day lately that its unreal. So scared! Not sure why lately its gotten worse
Mentioned Hyperalgesia and CNS uptake to my new pain doc...(he seems very good) but he didn't say much with regards to those..Guess he didn't want to make any conclusions just yet.
So.. Im scared to start Lyrica again (I used it in Feb for almost 3 weeks , a bladder flare occurred with urge, burning and retention) So I stopped it, but the flare never went away.. so probably wasnt' the Lyrica.
There are some other aggressive options we are looking at (I will PM you so the post won't be too long!)
Anyway Im also thinking of contacting a local urologist that has seen me in the past. He knows I have IC...He doesn't' get too invovled in IC and PN and referrs out to a faraway specialist..
But I figured he could check to make sure I don't have a UTI and also maybe show me how to self -cath in case I get too much retention. The latter (or maybe I'll call it urinary hesitancy, has kept me from getting relief, to a point.
Thinking I can cath if necessary would make me feel less fearful of that side effect..Does that make sense? I can pee enough to be safe but not enough to feel comfortable ..I wonder if cathing would help with that? Never done it and For sure I don't want to have to do this.
But I need relief from this anal pain more than anything else... so I have to be able to stick with a med for good amt of time
What do you guys think?
Sorry for a long post!
appreciate your wisdom and hoping the Lryica continues to show you boht more benefit and less side effects!
hugs to you!

[kathyd]

Helen
I forgot to add my good wishes to you that I hope that Lyrica can help you and that those dang side effects keep diminishing.
You are in my thoughts! Thanks for your ideas and advice!
Sorry for typos
Have a good weekend
Kathy

[helenlegs 11]

Reading your post Kathy I just wanted to come round to yours with some marijuana, not that I've got any, or smoke it, do anything else with it , wouldn't know what to do but I have absolutely no problems with it's use *. Would probably need to bring a friend who did know, to keep us right.
I'm not the type of person to stress, at work I was famous for being laid back in a sometimes stressful environment (targets, sales, benchmarks. . . oh do shut up, please. i'm just doing my job and extremely well ) But I have still had a couple of panic attacks so understand. I remember them so vividly, they came from no where as far as I could tell. . . . once while out shopping so very public I say from no where but my, now ex was having an affair and kept on having it!!, don't think I was at divorce stage then. The affair devastated me. . . .the divorce (eventually) made me
Now a bottle of wine . . . that I do have and know exactly what to do* .

Cheers,

Helen

Disclaimers. * sensible and monitored, strictly recreational use. . . .oh do shut up, please

[calluna]

I think I'll come round to yours as well, Kathy. With a big hug, definitely a nice bottle of wine. Or a cup of tea, maybe the wine wouldn't mix too well with all those meds...

Can you go and talk to your therapist? If you could work out what you are scared of, would that help? - you've worked out already that the Lyrica did not start the flare in Feb... but fear doesn't have to be rational, does it...

One thing. And yes, I know we're all different. But I have had problems with urinary retention for a while now, basically it is just very very difficult peeing. I get there in the end but it does take me a while. Anyway, I have been wondering if it is my imagination for the last week but today, well, it does seem to be getting easier. Maybe the nerve is not jumping so much? It all seems calmer. I'm certainly calm. Not so spaced right now because I haven't taken my evening meds yet - must do that now... oh dear, then I shall be falling asleep again.

I do hope things get easier for you Kathy.

And Helen, my other half agrees with you about marijuana. He had a misspent youth...
I was laughing - well, you know, not really! - at your story about taking the 150mg pregabalin instead of 25mg. That must have been quite an experience. Do you think it has worn off yet?

[helenlegs 11]

I'm not sure if it has worn off or not quite yet. . . . and I was blaming my bonkersness on a lack of cymbalta now that is mad!
I really do need to take a step back and reassess. Have only had 150 mgs today, so no overdose Had a little snooze this pm, well it's Sunday and Colin was out on his bike, it made me wonder how on earth I had managed to function at all on 2x and 3x this past week. Saying that, as I am typing this quite a few of the lower keys are spongy on my keyboard, shift spectacularly so, due to the fresh orange WITH BITS that I threw over it and me the other night when I missed the sofa arm. Maybe I functioned but not that well. I worried all night that I was to be lap top less, as only 3 months old, so phew!
With regard to marijuana, I went to art college and thought i was so cool. I remember sitting, crossed legged of course, in a circle with friends passing a joint, and they would miss me out!! was far too Ms goody two shoes back then.

[calluna]

Ah, but back then I was the one who never got invited to parties like that in the first place. I was a physics student, remember. Geek, me - then. Not so much now.

So you're up to 150mg, that's really good going. Are you getting any actual pain relief yet, do you think? First time round, I was just starting to notice a little bit of difference at that level. But it wasn't until I took it up to 200 and then 250 that it started to kick in properly.

It is different with topiramate running as well. I'd like to go back to 150, truly I would. I was not spaced out of my head at that level. And I don't really feel any difference in pain relief from 150 to 200. Or if there is a difference, I'm too spaced to notice it. Today is day 11 and I still feel so out of it.... Also, have discovered that I cannot count. Was counting stitches in my knitting - 57, 58, 59, mental blank! what comes after 59? No idea. Quite a strange thing really.

Btw I have lost the 4lb I gained. So that's ok.

Glad the laptop has survived!

[kathyd]

Hi Ladies-- Calluna and Helen.
Thx for your replies ... would dearly love to hang out you guys and sit and drink a nice glass of wine..What fun that would be! Before this illness wine was my favorite drink.
Hubby and I would try new ones all the time..Then the dreaded IC came on and I basically drink water ( which I used to hate) as the acidic stuff can burn....so depressing,..one reason I tried soo hard to find answers for the IC bladders issues....but the more docs treatments I had the sicker I got!....sit pain came on after about 3 years of treating ,,and so on...Should've left it alone and maybe IC would've resolved on its own!
About y "pot" idea we considered it ..Hubby has some from friends from back in the day and he got some stuff a few years back...I was not into it in college, (goody two shoes!) so never learned to smoke it right... it burned my throat.. anyway hubby got some a few yes aog..I tried to 'inhale' but guess I didn't do it right again! cuz it didn't work..
Anyway medical mariujuana is legal in my state so we are goin to look into it ...have to find out how!.. docs of course have never brought it up. ---

About fear, Calluna, my fear is--- Not getting well.This level of pain would be impossible to live with for years.. Im down to under 100 lbs as is.
Im basically traumatized due to 6 years of searching (esp the last 3 with sit pain the worst pain, and the horriblesurgical experience with that awful man (Dr Dellon) which put me into the pain Im in now
I also wonder if my fear of not getting better--- is making nothing work? like a self fulfilling thing... I think the trauma of the past 6 years has become like PTSD post traumatic stress disorder...thing... with my bladder reacting poorly to some meds ( lie elavil back in 2006 and anti-cholinergics, were the first time this happened
it kinda set me up to 'expect the can't pee reaction to all new meds.. sub consciously.... expecting it to happen!.. Im probably bracing.. ( I belong to a site called happy pelvis ..lot of gals with pelvic floor issues and many of us brace unsconsciously.. it tightens the muscles. We try to do pelvic floor drops, etc.
Also like many of us Ive had some very bad experiences with docs....(incredibly rude and hopeless thing said, ) hard to forget...makes you feel hopeless./useless .. and afraid of living in god-awful pain... or of nothing working...
If you read"lotta nerve's" posts I feel the way she did at times in the past...

I do have a cool therapist...we talk by phone due to logisitics (shes in NYC) ..and a so I can be comfortable. She says its hard to do cognitive behavioral therapy by phone which I need to re-train my brain to stop thinking catastrophically. She is not an MD,or PHD.. shes a licensed therapist; she's so suppportive and helps advocate for me when Im too exhausted to fight for myself..but Im not sure if she's actually does CB therapy.
I will keep trying the Lyrica...can't be sure whats causing the flare...its gone on since Feb but started when I took the Lyrica the first time.
thats' the problem with IC or nerve driven bladder issues.. you take a med,,,you definitely feel tight and bound up but it could be the "nerve" doing it ...or many other factors... I want to figure out how to fight retention--- as the feeling of not getting relief when you pee is prettyl- tortuous... but the anal pain is worse than anything.
There a compouding druggist in the states in CA who is making up various rectal and vaginal supps for issues like ours ...waiting for my new doc to contact him as he has some more supp ideas fore me ...long story.

It sounds like tho the pregablin- Lyrica makes you dopey etc... it's helping with pain right? Hang in there with it! Drowsy is better than pain... Good luck and thx so much
Nice talking to you as always! Hugs to you both! Have a good day/evening.
Hugs
Kathy

[helenlegs 11]

At 150mgs (1 pill a.m) I am just a bit more 'relaxed' I think is the best way to describe it, although it could be 'dumbed down' too. I definitely think I create less restrictions in my day as things don't seem to be as much of struggle but that is mentally more than physically . Of course the mental process is the key anyway. (Heavens I wish I did have central sensitisation, I'm sure I could deal with it fairly well ) Maybe I'm not keeping the focus on poor me, even secretly to myself so much?? I do need a more assessment (more focus back to poor me )as we just had a nice day yesterday and went to a fun Dog show, which was more to do with saving a green space from more infil housing. I was SO busy chatting to and buying from a lady with a card stall that I missed (well not me precisely) the puppy class which my Tilly would obviously have won paws down! We (sorry she) did enter gorgeous girls later but no glory!!???!! FIX!! Then later some friends called round. . . .lovely.
I think I would rather have some lesser dose Lyrica too as I really don't want to do another 150 later in the day but I know I need something more. Still have tramadol with which I do have a love/hate (constipation) relationship and cymbalta, no worries.
Trouble is the strange muscular skeletal nips and pains in the night or more early a.m. similar but not as bad as I had last time I tried this stuff. I just need to move about a good bit (but its a get up and move not just a wriggle) and they go.
I really do think that there will be a good or better outcome, once I get the balance right.
Keep on keeping on girls