How I'm doing on Lyrica / Gabapentin taper

I did quit Gabapentin entirely and went through a week of basically soul-crushing 'hardness' in my entire body.  It was as if a liquid went through me and then turned solid in my veins and muscles.  I was also really, abominably cold.  Like, didn't show my legs for a week straight because I needed clothing to cover them due to cold.  But also terribly hypersensitive to the feeling of clothing, so I basically only wore yoga pants.

Then I went on Lyrica.  It did make me feel like my muscles relaxed.  Although it was like a two-step thing.  I would feel it when I took it (the 25 mg), and it would make me feel something in my forehead and get really tired and kind of dizzy in my thinking.  That  lasted a while - like a few hours.  Then as that slowly subsided over several hours, I got more and more normal feeling. - less body pain, and less forehead pain.  However, My whole body was still incredibly tight due to how I felt after just having weaned off Gabapentin, and that did not go away.  So it was like having less pain on top of tons of pain.  I was wondering why I felt like that but I understand it now.  If I had taken Lyrica without all that excessive tightness from Gabapentin withdrawal it probably would have been better.

Anyways, I went from taking 25 mg Lyrica to 12.5 because of the dizzy tiredness.  I did not get the dizzy tiredness at 12.5  At first it seemed successful on my first dose, then, and perhaps I had poured out more than the time before, I just didn't feel it hardly at all.  Then I got withdrawal symptoms on that smaller dose, and thought, "NAH", and stopped taking it.

So, what occurred after that was interesting withdrawal symptoms- my body got kind of crazy feeling, then subsequently all hard (bad), then the ER thing happened for about a day where my thoughts were kind of flying, and my body STOPPED HURTING.  Then I woke up and felt normal, which for me is calm and back pain.  Which I haven't felt like in a month.  So the withdrawal may be coming to an end.  I'll miss you, ER stuff.  I'll miss how my body didn't hurt.


So, there is a middle ground.  I could have taken around 20 mg.  I think the issue is that it needs to last long enough to completely overlap with the next dose; it can't leave any wiggle room in between the doses.  That is a bit tough for me to figure out because at the 25 mg twice a day dose, I get too tired in the beginning.  (Although I did feel nice and calm for so many hours after that!).  So it's a crapshoot.  And I probably won't ever want to take it for the rest of my life and get addicted to it.

How I'm doing on Lyrica/ Gabapentin taper

I'm doing terrible, I'm unhappy, I'm in ALOT of pain which is not letting me go out and drive or do anything to speak of.  Although I have been to synagogue, it really hurts my neck and I can't stand during the standing prayers.

Okay so here's what happened:  I went to the rheumatologist and got prescribed Lyrica.  I was supposed to taper from Gabapentin at 300 mg every few days.

When I started the taper, I was surprised that my daily waking up in back muscle spasms stopped happening.  I had a few instances of side effects - headaches, but not too much.  It seemed like I was just in a generally huge amount of pain.  My muscles were all tight, I wasn't doing much besides staying home and occasionally walking Carly to get out of the house.  Its hard to explain - I was in more pain, but I was in less distressing muscle cramping.  So I thought I was doing fairly well, all things considered, as compared to how awful and horrible I was expecting.

But then a couple weeks in the stomach stuff really started.  Those fast bowel movements, light colored, and full of gas.  The gas wouldn't go away and it got terrible after a shit.  It was really weird. I'd wake up okay, but then as soon as I ate and had a BM, I'd be in pain for hours and hours.

I tried a slew of antacids over the counter, all of which didn't work for more than a minute.  I tried: Mylanta, milk of magnesia, TUMS, and Pepsid AC.  I had a funny week of trying them and feeling various muscle releasing (for just a few moments), which made me wonder if my muscle pain has something to do with stomach gas?  I mean what?  Why else would it cause that?  But on the whole, I couldn't figure out what was happening.  It didn't go away.  I went on Omeprazole, have been on it for 5 days.

Still taking Cymbalta.

Now as far as LYRICA:

I tried Lyrica once- 25 mg, and felt kind of helter-skelter pain relief.  I tried it because I was in so much pain from Gabapentin withdrawal, but didn't want to take more Gabapentin since I want to taper off it.  I tried it sincerely due to needing pain relief.  I am in more pain than I can tolerate.  Like I can't think or anything in this much pain.  I would if I had to, but its really horrible and I can't move and I can't be happy and I hate my life and should I kill myself, I don't know..?  etc.

I also tried 50 mg and that worked really well, gave me lots of pain relief.  I actually just laid down in bed and ended up napping a few hours. 

So Lyrica is giving me withdrawal symptoms too! After its initial pain relief- and boy do my muscles relax thank god.  Its like a feeling I don't even recognize, but it feels so right.  But anyways, with Lyrica, the pain relief has been sporadic - place to place to place, not all over.  Not only that, but it causes lots of cramping, at the same time as the pain relief.  And then yesterday, I took 50 mg, and got all wierd and pain relief, but,  when I slept i just woke up in pain with spasming muscles.  FUCK ME is how I feel.

What the fuck to do?  When I go off my meds, I get the stomach problem that doesn't go away, and gets worse with time.  And pain.  Which of course I need the meds to help with.  Dear god.  

I am so fuckign frustrated.  I hate that these meds cause me so much pain and cause me to feel like I am in a spiral of increased pain that i am never going to get out of. 

How I'm doing as of 12/18 on Gabapentin

I am on the max dose of Gabapentin - 600 mg, 3x/day.
So far I like Gabapentin, however I'm confused by my pain really hurting me a lot still (can't stretch, can't walk much), and by it working better and worse.  It doesn't give me any side effects, which is good.  I'm also on 20 mg Cymbalta, since November.

Every time I take Gabapentin, I need it.  That is, I am tight and sore and in pain and, I tend to expect that Gabapentin will make it better, which it often dos.  Sometimes, I really feel a period of pain relief, when I am lying down and ahh- all those spasming (cramping, pulling, tight) muscles relax. Its funny because I try to get them to relax all day by doing stretches/purposeful releasing, and yet its not until Gabapentin that I actually feel - oh, THATS how its supposed to feel.
I often wake up with a ton of spasms throughout my back that just get worse the longer I go without Gabapentin.

However, I don't feel that much better for very long.  And seriously, even though better is much better than spasming (much, much much much better than spasming, it makes me feel terrible), its not very good!  I'm starting to go crazy thinking that this is my quality of life- waiting for my meds to work, then going back into pain, and all the while not being able to run or stretch my hamstrings.

However also, of note- my experience is that Gabapentin works better when I combine it with Vicodin (from the ER)- which is 5-325 acetaminophen-hydrocodone, which I take just a half tablet at a time.  I really notice a difference.

Also of note-I had a few times where I took Gabapentin a little too close together.  What happened was really surprising.  I had a period where I was like thinking-thinking-thinking-thinking, my thinking was just off the wall crazy and I felt anxious.  But then when that subsided on its own, I became extremely at peace and "here" and could socialize with less problems than usual.  (as in, at the synagogue, and that one time at the pizza place after my neurologist appt)

So with those things in mind- I am going to try Lyrica.  While I do obviously expect it to help, that is why I am taking it, it likely won't help me in the incredible way that the anti fungal did, where my body started relaxing big time, not just a moderate decrease is spasms, but actually my muscles breaking open and letting go.  So... its probably not going to cure me, you know?




How I'm doing on Lo-Loestrin -- I had the least bleeding period ever, had absolutely no need for a tampon.  However, I felt that my blood really really smelled, stunk, and that was kind of gross.

Another incidence of the ER thing; but it was a short one

I felt the pumping feeling, after having gotten muscle spasms in my neck and jaw.

It wasn't a bad one, it only lasted an hour.  The pumping/rushing feeling actually felt good.. pain relief.

The very last thing I had eaten was a box of raspberries and a sip of wine.

Didn't get my period on 09/22

Didn't get it, it would have been a month from the last time.

So I took Brintellix and we will see what happens, if I get it again.  I took Brintellix 10 mg for 3 days only.  I had bad dreams but I also think I was having bad dreams before it too.

So-- update in a couple weeks..
I hope I get it!  It makes me happy.

Times I went to Moishe House (and thus had alcohol)

The first date, I'm not sure. Possibly: May 8

The following dates:
July 20
Aug 17 (I think I skipped this one when I was feeling really bad with symptoms..)
Sept 15

edited: nah, I tried some more wine but it didn't bring on any symptoms.  hmph.

Another incidence of the muscle spasms /wierd ER head thing

Began 09/16.
To go into a few details:

I was constipated beginning 09/15.  It was odd but I didn't think much of it.
Day of 09/16 - Was doing perfectly fine.  Took codeine along with Neurontin, something I had tried out the last two days.  Around 4 pm, got really nauseus, threw up, and then also had all this pain relief throughout my body, but sick feeling.  Figured that it was due to the Codeine, a side effect of Codeine is nausea, but I had taken Codeine the day before and not had nausea.
Head started really hurting, enough that I was vocally going 'ahh, ahh', and staying out of light from the TV.  I was nauseus.  I forced myself to eat a chocolate bar and I felt better a few hours later and went to sleep.  I woke up at 6AM which is strange for me.

Currently- getting muscle spasms, ow!  Not very nauseus, but a little.  Definitely not getting that rushing feeling which is also pain-relieving.

I'm getting tested for Variegate Porphyria today.. hope to heck that it IS so that I can get a diagnosis!.

If not, then WHY AM I GETTING MUSCLE SPASMS INTERMITTENTLY 


edit: I am not on birth control so its not that.  I didn't change my meds significantly.. I did try codeine, could that have been the culprit?  But, I didn't have codeine the other two times it happened this year.

EDIT: Test for Porphyrins was negative, so its not Porphyria :(