sunnylou: 1mg Risperidone 900mg gabapentin taper

[sunnylou]

Lex, wow. I mentioned piriformis just about 4 posts up, along with the pudendal nerve. I actually was rolling round on a tennis ball on the floor against my buttock to try find a tight piriformis. For a while I was thinking it could be this. The only reason I have swayed towards the pudendal nerve is because I get a lot of nerve pain inside privates, and rectum. It is difficult to cope with, burning and heavy feeling like a prolapse type of feeling from privates, almost like it could fall out, and burning in and at entrance of back passage. The pudendal nerve innervates these areas so It could well be that. 

 

I am shocked you found all this. I've done a lot of reading on this very subject aswell. Wonder how your massage will work if it is this. Piriformis renders people unable to sit aswell. Haven't watched the videos yet just wanted to get back to you quickly first!

[LexAnger]

Omg, I'm so sorry! That sounds truly awful! 

I have been doing all the streching recommended on youtube since last night i found the info, along with massage using a electrical massage board. I feel that streching serms helping more. Ut need more time to be sure. My pain got lots worse lately to unbearable level. Used to be ok with other postures other than sitting but now even lying down hurts a lot. Also the pain is much more intense when my pins and needles pain ramps up allover me from head down to the back/buttocks area. So I got 2 types of pain, one is more like the piriformis from the muscle (when being pressed) and the other pins and needles sharp type (there without touch). The pins and needles has Bern with me for years from lex but it never passed my middle back until recently since the back injury.

 

Is the gabepatin helping you a lot with the Pain? Do you feel the pain only when you sit? 

 

 

[sunnylou]

Hi Lex, I hope that alI the stretches will help you. From what Ive read its difficult to deal with. Theres a lot going on in the pelvis/buttocks isnt there. I suspect one problem could cause another. Ive read that a few times. I've lost my routine. I have been on my feet too much, and not laying down enough. I've started to keep a journal on all this pain by drawing diagrams of the leg/buttock/foot etc and marking with a circle where the pain is. I draw a box for morning, afternoon,tea time, and end of the evening. I'm starting to see a pattern of this being pretty good in the am, and worsening in the pm. Also it will help me to describe to any Doctors better as I have not been able to explain it properly.

 

When I was given Gabapentin and Amiltriptyline I just was so pain Free the Doctors haven't seen me since for 3 years. Because I couldn't feel it hardly I just stopped Persuing the cause. If I can be sure mine is pudendal there's hardly any point in Persuing a cure. They want to stick electrodes in privates and rectum to try innervate the nerve, also nerve blocks that may or not work, then if these have been successfull it can lead to decompression surgery which takes 1 year of more pain to recover from, and plus all the investigations I just mentioned can all make the condition worse!   I've read many stories of people getting worse. That's not all either another treatment that can be tried and is carried out regularly is internal trigger point therapy. A therapist literally massages inside your privates!! Just reading all this makes me worse. Hope this post doesn't scar anyone for life! It is really something if a patient can even  manage the symptoms ie: adiquate pain relief is what I have concluded,

 

 I think the Gabapentin is helping to some degree but not as well as it was yet. I did not feel all of this pain before I tried tapering it. Compared to how it was before I up dosed it is a bit better for sure. Its about 4 weeks now so there's time still I hope for more improvement. 

 

[sunnylou]

33 days since up dosing Gabapentin from 300mg back to 900mg. I wish I could say all is back to normal but it isn't. The slightest stress can make me burn up. Still unable to sit, and feeling really weak now I keep having to rest on the bed. The very hot weather here is not helping though. If this doesn't work, would going up more even help? Or could raising the Amilktriptyline help? Wish I knew the answers, Dread to think what the Dr will say. Still in fear they will make me taper off it to try something else, and what with drs mostly believing there is no withdrawal from this could make me do it too quick. I darent go as I do not know what to expect. I have no courage right now.

[sunnylou]

Day 34. And I'm having a good day (so far) oh my gosh....please let it last. Can it be that the Gabapentin is starting to settle in again? I'm not in too much pain today. Its really hot but I am super calm, cool, and collected! I hope I'm saying the same thing tomorrow. My leg has been OK, my heel, buttock, hip OK as well. I just had a play of my guitar....except my brain is like mush from the meds and its so long since I had a go I forgot some things. I'm only a beginner really but it used to give me joy. So today I am happy right now!

[LexAnger]

Awasome, sunnylou!

My god, finally! I'm so happy for you.

 

Can you sit without the pain now?

 

May it stay forever!

Hugs

Lex

[sunnylou]

Hi Lex. Had a good day that day but now a few days on........ I feel like im having a prolapse. I've got a falling out feeling in privates, and when I Google it is saying prolapse. This has blown the rest of the leg/hip/buttock/heel pain out of the water. I knew nothing about this subject and yet 50℅ of 50 - 79 yr olds have a prolapse. Its terrible. If you have something removed the other organs can then prolapse. My life is just ruined. I could be wrong but I don't think so. Everything's happened at once.

[LexAnger]

I'm so sorry the issue didn't go away as we hoped! 

 

I trust your instincts as even for situation no one can truly give a diagnose that agrees with instincts, as we are the one feeling how our body feels and responds to every little different situation. 

 

I hope you can get more help in both a sure diagnose and treatment with this new finding.

I hope it's not a too complicated situation and it can be resolved.

 

This is so tough giving the already very complicated and difficult meds situation. I'm truly sorry for the extra stress and hassle.

 

You are in my prayer now.

Lex

[sunnylou]

Thankyou Lex, Your encouragement as always is greatly recieved. I will give it a few more days. Then if necessary go to the Doctors. 

[sunnylou]

My Dr believes there is a withdrawal syndrome coming off Gabapentin. I asked him today. So that is something....but his idea of tapering his way too fast and actually no different to what I did too quickly to end up like I did, This is the 2 tapers, mine and the Drs: 

 Dr: 3x300mg down to 3x200mg then a month later 3x100mg     (he didn't say the end but I presume then off.

Me: 3x300mg down to 2x 300mg then a month later 1x300mg.   So it was the same dosages I took

 

I didn't even finish the taper, I got to 300mg then went back to 900mg. 

 

I didn't get very far with my Gynecological problem. There was only a male Dr and I'd missed the cut off point for them to send any lab tests. I have to go see a female Dr on Wednesday. Huff...5 more days to wait. Maybe I'm wrong about the prolapse thought. I've had zero leg/buttock pains (though haven't been sitting), so its a shame I've got this other problem to confuse matters otherwise really in all fairness, apart from a couple of off days, and this extra problem things are not too bad at the moment.

[sunnylou]

The Dr says I haven't got a prolapse! I hope she's right! I have been referred to pelvic physio therapy, and a Gynaecologist. Still a few gynae issues, not as bad, not a falling out feeling thankfully. The leg/hipl/buttock/thigh pains are all back under control with the Gabapentin now. It took over 6 weeks to become stable again after the updose from 300mg back to 900mg. I have had no burning whatsoever for days on end now!! ... I never thought it would end. 6 weeks ago I thought I would never feel normal again. I should soon be able to resume tapering of the Risperidone. 

 

From here on this is what my thread will be about. Tapering 0.9mg of Risperidone!

[Altostrata]

Thanks for that good news, sunnylou. Please let us know how you're doing.

[sunnylou]

Well I did wonder if the Dr was wrong. I ended up going back to her after 10 days as I was still in a state. I asked her for a standing examination.....and she found prolapse. So my instincts were right. I am more than depressed over it, and am conscious of it every waking moment.

 

I should be thankful I am not feeling the pudendal (suspected) nerve pains at the moment as well as that would be terrible.

 

My plans to continue tapering Risperidone are now back on hold for the moment whilst I try and get my head together.😕

I'm not sure I can have a ring as its the anterior bladder wall and not the cervix.

[Altostrata]

I am sorry you have to deal with this, sunnylou. You are wise to stop make drug changes while you address this medical condition.

[LexAnger]

I'm so very sorry sunnylou! This is so unfair! 

 

I can imagine how you feel. I have been depressed ever since the back injury and more later when it's not improving, keep thinking it will never do. It is on my mind all the time more than the whole wd horror! 

 

I hope they can be treated giving the sure diagnose.

 

Sending you warm hugs!

Lex

 

 

 

 

[sunnylou]

Thankyou Altostrata and Lex. Its lovley to hear from you. Your kind words mean a lot. Its nice to have met some lovley people here during these last few weeks.

 

I found website the lady is a Dr and had prolapse herself. All her workouts are prolapse safe and she says grade 1, and grade 2 can be reversed. I have to give it my all. Its strange how it happened when having WD issues due to the Gabapentin. Feels like every time I try to kick a drug I get bitten by some physical ailment.

[LexAnger]

I Pray for you sunnylou for this doctor to be able to cure it quickly and painlessly!

 

Keep the positive thinking and safeguard the wd process without over thinking it.

 

I would guess avoiding standing and sitting helps. 

 

Please let us know how it goes.

 

Lex

[sunnylou]

Well I'm still feeling a bit sorry four myself but at the same time have had to take a positive step forward. There's a physio therapist on YouTube who had mild prolapse herself and now does lots of exercise routines all specifically for the problem. She managed to cure hers. I am hoping it is mild, and by doing this and the physio I am being referred to, that maybe I can heal it. I'm looking at a 3 month wait for my Gynae appointment though as its been cancelled, and it was 9 weeks ahead as it was. They will arrange physio.

 

I figured I would have to do something to help myself between now and goodness knows when. I'm finding the pelvic floor exercises hard though as I have literally no butt muscles! Just thin and flabby. I wish I'd thought of getting in shape before now. Having so little muscle everywhere might be a reason for prolapse. I'm still suspicious it happened after 6 weeks of Gabapentin wd and losing weight so rapidly due to nausea. Also washing the bath out too often at the time ( family of 5).

 

I used to wash my hair over the bath, as we have no shower. The bathroom has a sloping roof above the bath so we can't fit one. I don't like washing it in the bath as its difficult as its long and thin. I now am trying to wash it at the kitchen sink....but that isn't easy either!!

One day I hope to read back through my thread and think.... things are much better now, as this past 3 months or so have been quite trying.

 

Was looking at my Risperidone tonight though and started feeling a bit of willpower coming on. It was easy having to switch to the smaller different shaped tablets after running out of my original ones. I have only taken 10℅ off of 1mg so far, and that was a while ago now. 3 months I think.

[sunnylou]

Well I dropped from 1mg on 21 st April (first 10% cut). I am only just tonight on the 21st August dropping again another 10%. My new smaller pills weighed 0.92mg. I  was taking 082, and now tonight its 073mg. It just felt right tonight. I've had some right ups and downs but need to move forward with the taper. I so hope I will not feel the drop. I also hope I get more of these size tablets given, I've already had to change types once and already have been given one prescription of yet another size. Because I am supposed to be on 2mg I get twice as many as I need and am grouping them together according to weight. I have quite a few of the ones I'm using now though thankfully but hoping for more.

 

So glad to be dropping again!

[sunnylou]

4th day of 2nd 10℅ cut from 1mg risperidone 0.092mgpw to 0.82mgpow to 0.73mgpw.

 

Feeling OK. Thankfully no problems so far. 

 

Going to be on this dose for 1 month.

[sunnylou]

13th day of 2nd 10℅ cut from 1mg risperidone 0.092mgpw to 0.82mgpow to 0.73mgpw.

 

Still OK. Not experiencing anything bad.  Hopefully this continues. I am prepared to take this as slow as possible to avoid any withdrawal symptoms. Not going to read any horror stories, although I have in the past. I need to stay calm about this. Its so important to me to get off this particular drug. 

[sunnylou]

Its 31 days so a month since my 2nd 10℅ drop. I feel great about this taper so far as I've felt absoloutly fine. So fine that 31 days has crept up without even realising till updating this thread.  Now I will start to get ready to drop again. I'm so looking forward to getting to 0.5mg. A bonus at that stage is I got quite a few 0.5mg tablets and won't have to weigh anything for once at night for a while. I've come off Diazepam in the past, dropping in 10℅ drops from 10mg down (took 4 years) so this is just 1 mg and I've done 2 10℅ drops. I think it works out at 0.81mg that I'm on now...hooray! The next drop will be a step nearer to that goal.

[sunnylou]

My goodness time flies so now I am 51 days, about 7 weeks since I made a reduction and still feel absoloutly fine. I just need to focus again now and make another reduction. I keep waiting for perfect opportunity but there's always some appointment or other thing coming up, and there's never really a stress free time so yes its time to drop again tomorrow night. I think I've been really carefull. I'm not in a rush. I just want to achieve getting off Risperidone without developing involuntary body movements which I read about. That is my main concern! So my 1mg Risperidone weighed 0.92

                                                                                                                    . I dropped to 0.82 then

                                                                                                                                             0.73, and now

                                                                                                                                             0.66  😃

Here's hoping this drop runs as smoothly as the others. I will be delighted if that happens, Best of luck to everyone  on SA battling WD, its a great place to document a journey that could one day help someone else, and in a safe way as SA recommends by reducing by no more than 10℅ of current dose.

[carefulprayerful]

sunnylou, 

 

I am so glad you are tapering after only a year of taking Risperidone and that you are making smooth progress!

 

I am also concerned about TD, but I have to respect the pace my body can go at. 

 

Did you know Risperidone is available in liquid form?  I switched to the liquid in stages as it can be bumpy for some.  

 

Thank you for your message and best of luck for your taper!

 

carefulprayerful

[Emilsen]

Dear Sunnylou,

I found your thread as I have a lot of the symptoms you have endured through your taper, including the “falling out” sensation you mention. I have been told that I only have minor prolapses, and that they should not be able to cause the severity in symptoms that I have... Can I ask how your issues in that departement are going?

[sunnylou]

Thanks for your encouragement carefulprayer.  I will be watching your progress too! I really hope this taper goes well for us both!. I am aware of liquid risperidone but am managing excellently just chipping a bit off the tablet and weighing on a milligram scale. I get it bang on most nights now. The remaining bits and pieces I keep in a tub incase I need a tiny bit if I crush the tablet a bit too much. I then dont need to cope with trying to weigh loose powder. It is an extra chore of the day I can't wait to get behind me although I am doing this very slow just to be safe. 

[sunnylou]

Hi Emilsen. Thanks for messaging. My prolapse is classed as mild to moderate so far as it is not stage 3 yet. I bet there are many who would suggest the same to me that the prolapse isn't advanced enough to cause this amount of symptoms but if they did I would be annoyed. It is awful walking round every day with all the strange feelings down there. I didn't know how I would carry on living feeling like this when it happened in June, diagnosed July. The most persistent symptom of the feeling of bubbles coming out or getting stuck especially after bending or peeing is really getting to me now, If I cough I feel it goes through a big hole to nowhere...its awful. I feel like I've had the plug pulled right out of me! I'm 46 and had 3 vaginal births, Can I ask what age you are? Do you have any idea what caused yours? I'm so sorry to hear of another soul going through this. I had never heard of it before so it was and is still a huge shock.

[sunnylou]

So due to the above embarrassing problem, and other things I did not reduce the Risperidone as I had planned to 0.66mgpw. I am trying to get the willpower to do it. I was given it by a Dermatologist for a condition called Morgellons. Once classed as delusional. Fibers emit from the skin and are not textile in origin. They can be seen on the skin,clothing,home with the use of a Ultra violet light (cheap 9 led UV torch eBay £3 is what I used) They fluoresce bright green. I thought I was a rare case and freaked right out. The Risperidone was to calm me down. Since then I have found these fibers everywhere with my torch, Hospitals, Holiday complexes, my Drs surgery, brand news clothing in stores, Its everywhere, I am sure at some point others put on Risperidone for this reason will find this taper and it may help them.

 

I threw half the contents of my house away and the whole of my wardrobe bar 2 outfits. I rolled up and disposed of my carpets. I bought stacks of super sticky lint rollers, allsorts of remedy's on the web including Borax and, Kleen Green. Nothing could get the fibers off the clothes. It is all over electrical equipment, TVs,game consoles,hoovers.......everything, and nobody knows hardly. Babies must be touching it and getting it in their mouths.

 

It wasn't everywhere in the late 80s early 90s as I used to hire sunbeds to use in my bedroom. It would have shown up, Also in the pubs/nightclubs around that time there were lots of UV lights, and again it wasn't there or everyone would have had fluorescent green strands on their dark clothing.

 

Now I am used to its presence, I've given up the meticulous cleaning, and lint rollering. It still iritates me that its on everything but I want off the medication. 

[sunnylou]

My Dermatologist has seen the Morgellons fibers with her own eyes in patients skin and with UV on their clothing. I am therefore not being treated as delusional. She says Morgellons is a national and international problem at the moment and that nobody knows the cause. There is still a lot on the internet though questioning whether Morgellons is real. Its so annoying. Even though its visible with a cheap £3 UV torch off eBay.

[Melissa5000]

Those morgellons sound very scary. 

As we have no influence on them we can better accept them. They are just there. 

 

Sad that the doctor gave you meds for it. 

[sunnylou]

Hi Melissa! The Dermatologist tricked me though as she said the Morgellons  would disappear. When I questioned her many months later if she was meaning just the symptoms would go away she said yes! Therefore I feel a bit deceived, and left with a Risperidone taper.  You are right though. I have to just accept these Morgellons fibers are everywhere. Just wished I hadn't pulled my stairs/landing carpet up as until I've replaced that I still feel the bad memories of my discovery of this bizarre phenomenon. I pulled it up as it was dark brown and under UV light it was covered in them. 

 

Is there anyone else happening to read this who is aware of this Morgellons? Please do contact me!

[carefulprayerful]

sunnylou, 

 

Although there's more to the story, I was first given Risperidone for panic attacks/PTSD. 

 

It is noteworthy that antipsychotic withdrawal can cause 'psychosis' even in people who have never had psychosis before (as Dr. Breggin explains). 

 

I got off Risperidone after 1 year via a fast taper (i.e., 2-4 weeks), and I experienced withdrawal-induced 'psychosis.'  My thinking didn't make sense, and I blanked out for hours.  After this experience, I thought something was wrong with me and I just had to stay on the drug.  Here I am 4 years later (that's a total of five years on the drug).  I wish I could go back 4 years and try the 10% taper.  It would have been so much easier to do a slow taper off this drug after 1 year of exposure than it is now after 5 years on the drug. 

 

You are in the right place!

 

💜 carefulprayerful

[ChessieCat]

Hi Sunnylou,

 

Morgellons  Would you like to start a new topic in the Symptoms and Self Care forum?  Other members have mentioned similar sensations which, naturally, have been attributed to withdrawal, so it would be helpful for them to check for this, especially since it is very simple and cheap to prove or disprove.

[ChessieCat]

Have you seen this?  http://www.morgellons-research.org/morgellons/morgellons-intro.htm

[sunnylou]

Bi Chessie Cat. Yes I stumbled across this website, and although I thought no eay is this my skin condition, I tea you could buy a usb microscope. I thought that to be a good idea though and bought one for £12. I got a huge shock! Here's one of my own photos I took with the microscope

[sunnylou]