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sunnylou

sunnylou: 1mg Risperidone 900mg gabapentin taper

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sunnylou

Thanks for replying Gridley. The burning flashes to chest/shoulders/arms have lessened quite a bit, but my leg/buttock is the same. Not constant pain but I cannot sit down so the pain killing effect is less because I was able to sit before. Im now alternating between standing/walking, and being horizontal on my bed. About 50/50. Which is how life was before starting Gabapentin (and Amiltriptyline). I've improved a little tiny bit, I suppose is the best I dare say.

 

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Gridley

That is very encouraging, sunnylou, that some of your symptoms are improved.  Withdrawal doesn't follow a straight line, and there may be changes in the ways the drugs affect you from when you were on them before.  

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LexAnger

Hi Sunnylou,

 

found you by searching back pain as I'm going through the exact same sxs as you described about this very crippling and stressful sxs.

 

i had pains all these years tapering lexapro but never had it below my middle back. Two month ago I had a back injury by my therapist which caused lots pain on my back, sciatic joints, things, legs. Now even the back improved some, the strange pain is still flares up whenever my general nerve pain is bad. I don't think my current pain is the same as the one from the back injury anymore, rather it's more like nerve pain from WD only triggered by the injury. Like you, I haven't been able to sit ever since, only horizontal position. 

 

You mentioned your back pain started during your tapering of the first meds. Have you ever had back problems before that? Is it purely caused by WD? Is the pain constant or go with the other body pain? Mine comes and goes, goes with my burning, needling, pain and other old WD sxs.

 

I am heartbroken to hear you have been suffering this horrible pain for so long. I hope you find some relief from something and it will go away sooner than later.

 

lex

 

 

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sunnylou
2 hours ago, LexAnger said:

 Sunnylou,

 

found you by searching back pain as I'm going through the exact same sxs as you described about this very crippling and stressful sxs.

 

i had pains all these years tapering lexapro but never had it below my middle back. Two month ago I had a back injury by my therapist which caused lots pain on my back, sciatic joints, things, legs. Now even the back improved some, the strange pain is still flares up whenever my general nerve pain is bad. I don't think my current pain is the same as the one from the back injury anymore, rather it's more like nerve pain from WD only triggered by the injury. Like you, I haven't been able to sit ever since, only horizontal position. 

 

You mentioned your back pain started during your tapering of the first meds. Have you ever had back problems before that? Is it purely caused by WD? Is the pain constant or go with the other body pain? Mine comes and goes, goes with my burning, needling, pain and other old WD sxs.

 

I am heartbroken to hear you have been suffering this horrible pain for so long. I hope you find some relief from something and it will go away sooner than later.

 

lex

 

 

 

 

 

Quote

 

 

 

Hi Lex,  oh my goodness, cannot believe you have the same problem, and also found this thread. Thank you for your message. It is terrible being unable to sit. Its so confidence destroying. Yes it came on during my previous taper of Diazepam.I never had any of these problems before the taper, and still ask myself the same thing.....Did the taper actually cause this??? The Dr was pushing me too quick, I got strange sensations electrical, and burning feelings for a few days and wham! There it was. I couldn't sit for 3 years approx 

I was offered Gabapentin weeks after finishing the taper because it was unbearable. I couldn't stand on one spot, ihad to keep shuffling around with the burning  and ' needling' is a good description actually. As it is hard to describe but it runs down the back of leg, and inner thigh. Also real tight buttock pain.

 

When I was given Gabapentin it didn't stop it but it helped in some way at the time, I was then offered Amiltriptyline. I was reluctant as just done a most horrid long almost 4 years taper was ending up on 2 more meds but the Amiltryptline stopped it. But I don't know if it was a mixture of the two as I just tried to taper the Gabapentin, (stupidly too fast), and ive completely blown a delicate balance of what must of been containing it, because its back. Even though I've updosed back to my long term dose. I'm 50% on the bed. I also have problems with heel pain when it gets bad, and yes like you it comes and goes. I keep trying to sit, and I can't. 

 

I'm so sorry you have to deal with this, its so terrible. I just don't know what to do now if it doesn't improve and I'm scared the Dr will say I have to taper off this Gabapentin as its stopped working, and that is going to be a nightmare. Why ???? Did I mess with it. I saw lots of specialists, muscular, skeletal, spinal, rheumatologist, MRI, x-rays, nurologist. None of them could diagnose.

 

I hope this doesn't last for you, maybe it could improve somehow without medication. I am also heartbroken for you. It affects everything. Its a very sitting world we live in. Its awkward, and it makes you have to lie down because its the only way to get off your feet. I know its the pits.

 

Sunnylou

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LexAnger

Hi Sunnylou,

 

my god, so you also slow tapered dizapam for 4 yrs still were harmed so badly? this drugs are truly the most evil and damaging thing in the whole world! 

 

Is that the two new meds purely for the nerve pain from tapering off dizapam? do you have similar pain on other part of your body? If so did the new meds help? It pains my heart you were put into this horrible situation. 

 

My my pain is exactly as you described, they are on hips, back, thigh, legs buttocks on both sides. How I figured it's not my original pain caused by the back injury ( another agony from the medical professionals, my therapist)? It goes with my other body sxs from WD. When I have muscle spasm on my head, upper back, it's the spams on those parts too, when I have needling or electrical pains, it's the same on those parts too. When I don't have any on other body parts, none on those parts either.

 

in the past 2 months, my only postures are on my back, on my stomach, standing, or walking. It seems the best is walk, 20-30 min walk actually can help quite a bit ( to overall pain along with those areas). Sauna helps too for me.

 

now I'm pretty sure with the assurance from you that these are the nerve pain caused by the drug or WD. I'm almost certain no one can help except for the natural healing of the body over time. If you look up my recent update to my thread, I was hurt multiple times in the past two months by various things, MRI, therapist, MSG, aspartame. I won't go back to anyone or any meds except for my alcupuncture doctor for massage which I found helpful.

 

so I have been researching day in and day out since the aspartame reaction. This substance and withdrawal of it can cause many nerve damage and sxs including nerve pain. I'm 10 days since stopping aspartame so in severe WD of that on top of previous MSG reaction and the original WD from lexapro. Things are very complicated now with all these plus the back injury. We will see what is what soon. I hope it's aspartame related and it will go away once I'm recovered from that.

 

Also, I wonder if my all time severe needling pain maybe partly caused by aspartame that I have been taking for couple years from a fiber drink everyday. do you know anything you might take regularly that contains this poison?

 

so far I found we two are the only ones with extremely similar pain. I know how horrible it feels and can't believe it has been three years for you, on my, poor thing.

 

please let me know if you'd like to talk over Skype.

 

wish you a better day!

lex

 

 

 

 

 

 

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sunnylou

Hi Lex, no I don't use aspertame. I've known it is poison for years. I only drink tea, and coffee with no sugar,no shop bought cans, juice, bottles. I remember during my last taper I felt sensitive to MSG, and many other things, and have felt the same internal reactions from southern fried chicken ( must be the coating), and spicy burgers in the past couple of weeks since tapering Gabapentin. 

 

Yes I ended up on 2 meds due to the last taper, and I wouldn't be surprised if I end up on something else now due to trying to get off Gabapentin. It will depend on how I can cope again now with this pain. I'm certainly going to try without anything else. It radiates to my hip, and front of hip as well, and feels so delicate. Not even going to try to sit today. It just goes straight to buttock pain 😠 Hope you're feeling as well as can be today.

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sunnylou

So today is day 7 of up dosing, and I woke up burning. I didn't actually wake up burning for 2 days straight so I thought that might have stopped but no It happened this morning again, and will come, and go as it pleases throughout the day. Its waking up with it that freaks me out. 

I take them at 8am 4pm, and 11pm 

My Risperidone taper is history at the moment. I've messed up big time.

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Melissa5000

I think it is a very good sign that you don't have the burning every day. And also that it is not the entire day very intense. I would consider that as a few short windows!

I don't have any windows for the burning in my hands yet. But sometimes the storm of nervepain in my body is less intense. And there were a few days that I did not have that symptom. That really gives me hope!!! But the burning in my hands is still worrying me. 

 

 

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sunnylou

Melissa I'm  worried for you too. With no windows. How the heck are you coping? Also if I had taken out Amiltriptyline as well,  I can't even imagine. I'm thinking of you all the time.

 

I had a root canal problem. The dentist broke a file in the canal and never mentioned it. He also did it in the wrong tooth. I went through agony. Another dentist (same practice), x rayed and found it out. I had to have a hemisection which meant cutting the tooth in half, rare , and have an 'unideal long bridge' now as I already had another bridge next to it.He had to pay me compensation. £9000 settled out of court, was worth up to £25,000 if Id have waited it out and gone to court. The practice itself told me to file a claim as they were so annoyed at their employee. Surprised I didn't end up on Gabapentin then like you. That's what breaks my heart about you as it was because of a root canal. Makes me wonder just how many of them cause devastating consequences!

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Melissa5000

So you also had a horrible dentist experience. Shocking!!!

 

I can't use my hands properly for 8 months. My toes start to burn if I walk 1000 meter or less.

 

I can't cope anymore. I am too disabled. That's why I wanted to updose. I probably need to updose a little more lyrica. Maybe to 125 mg. I'm not going to updose all the way  to 450 mg of course. But I feel I need just a bit more so I can survive.

 

I always thought it would pass if I would wait and see. But it didn't happen. I realize that I tapered too fast. Now I need some partial relief so I can be strong enough to wait. It may take years to stabalize. And then I have to taper the rest of my meds.......... I don't know how many years I will be waiting and tapering? Maybe like 10 years?!  

 

Today my arms and hands are sore and burning. I try not to use them (so  they can rest) but that is impossible.

 

 

 

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sunnylou

8 months!   You must be in absoloute despair by now. So the Amiltriptyline is still not showing signs of working yet at all? I'm really hoping on that for you. The moderators might come up with a suggestion for you regarding possible Lyrica updose. Its knowing how long to give each idea a chance isn't it.

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sunnylou

I'm so sorry if anyone comes across this thread looking for an experience of a Risperidone taper. I don't know what I was thinking. I tapered 10% of 1mg, but now  I am having problems stabilizing the Gabapentin I'm not sure what I'm going to do now. I wish I had never tapered Gabapentin. It seems I need it to cover my chronic leg pain, although I dont know if its going to work again. So sad I am now stuck like this and instead of only being on Risperidone 9 months, its turning into a year.

 

Day 10 of updosing Gabapentin, and still feeling the same. Wondering if there's still hope that this reinstatement will work. Didn't wake up burning this morning which amounts to 2 days out of 10 now, the other 8 days I did. Beautiful summers day, and I'm on the bed as I still cannot sit down, and just want to be pain free and keep cool. If I didn't manage self composure I would be terrified at how much I've messed my life up

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LexAnger

All my fingers crossed for the burning never return! 

 

 

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Melissa5000

Hello SunnyLou, how did you wake up today?

I hope your burning is less. Has your legpain allready improved a little since you updosed?

 

It is horrible to be bedbound. I am housebound so I have an idea how it must feel for you. Lets hope improvements come quick!     

 

 

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sunnylou

Hi Melissa, I woke up with the burning again,  im so fed up. Also eating or drinking something can set the burning off as well in the stomach area. If I just don't try to sit at all my leg is much better so I'm just going to keep like this, half on feet, half on bed. Its very hot here today much like yesterday which is making things worse. Feeling so low worrying this updose isn't going to work. I'm 46 but feel 66. Is the Amiltriptyline having any effect yet? 

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LexAnger

I am sorry you are struggling so much with both. 

 

Didn't want to say much about the updose effect I experienced with lex. It brought up huge side effects and many crazy sxs including the needling pain, cognitive issue etc. I really hope it's not going to cause problems to you. 

 

As for the back pain, it's a constant stressor for me for the past 2.5 months. I am doing exactly the same taking only those 2 position really depressing.

 

God I hope there is a magic button I can tune off all these suffering for us.

 

 

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Melissa5000

Awfull that your burning is still there! I had it too when drinking tea that I felt it burning down my throat and in my stomach!! Very weird.

 

Nasty that you can't sit anymore. 

 

A magic button would be very welcome Lexanger!!!

 

 

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sunnylou

Today is day 16 since updosing back to where I started 900mg Gabapentin. My original leg/buttock/hip pain is still back, and I'm still unable to sit, and still with the leg pain. Still 50/50 on the bed or standing. Also still getting burning episodes, though a but milder in the mornings upon waking now for the last 3 days. Feel really wired upon waking as well. It is strange taking all that Gabapentin yet being in pain. Feeling really low & depressed and worried about the future.

 

 

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Altostrata

sunnylou, have any of your symptoms improved since updosing gabapentin?

 

Have you discussed your pain with an orthopedist or rehabilitation specialist? It could be sciatica from misalignment.

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LexAnger

I am so sorry sunnylou! 

I know exactly how you feel with the pain and frustration living with this condition for so long! 

I got very depressed often whenever I think what it took away from my life and the suffering. The negative mental impacts are as horrible or more than the physical pain. I hope the dose increase will reduce or eliminate the pain soon.

 

I had huge difficulty accepting this condition ever I tried hard to think in a way making it easier to accept.  

 

As fir the burning, I hope it goes away soon. These drugs are so unpredictable in so many ways. At least for this one, be good for God sake.

 

Hugs,

Lex

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sunnylou
10 hours ago, Altostrata said:

sunnylou, have any of your symptoms improved since updosing gabapentin?

 

Have you discussed your pain with an orthopedist or rehabilitation specialist? It could be sciatica from misalignment.

 

 

Hi Alto, I haven't seen an orthopedic yet. So far I have seen: 

Musculoskeletal specialist

Neurology specialist

Spine specialist, .....had MRI, perfect spine according to it, and X ray, so its not discs.

Rheumatology specialist

Vascular Specialist

 

None of these could diagnose, and I've seen also about 3 different Drs as we have a large surgery with about 7 Drs and always get appts with different ones so there becomes no consistency with which Dr one sees. Its been 5 years now with this leg/buttock/hip/heel pain. It came on during Diazepam taper in 2013. I will have to ask if its possible to see an orthopedic.

 

Have symptoms improved since updose? The burning is a bit fainter in the mornings. The leg pain is also a bit fainter in the mornings, as both were raw to start with. So that is a small improvement. However like yesterday the pain can ramp right up around 4 o clock so its not consistently milder, Its a long time since I've felt all this pain again, and its so confidence destroying. Being unable to sit is terrible. Given up trying as it is too painful. So tired of being on the bed.

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sunnylou

Thanks Lex,

      It sure is difficult navigating around this all consuming condition. Its taking up all my thoughts. Still trying to stay positive, Not one specialist has suggested sciatica. I found 2 more things that sound similar, pudendal nerve entrapment, and piriformis syndrome. Just researching this unable to sit condition makes it hurt even more.

 

I wish you lots of courage, and patience to succeed with all this Lex, you are a lovley person, and you don't deserve this after everything you've already gone through!

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Altostrata

Many MDs are not attuned to alignment issues, DOs (Doctor of Osteopathy) are better.

 

Can you find osteopathic manual therapy in the UK? That would be my first choice. I'd look into physical rehab therapy. Even gentle exercises might help.

 

 

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Melissa5000

Hello Sunnylou, how are you today?

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sunnylou

Sorry Melissa, I missed your above post! Today however has been quite OK. It is 23 days since up dosing..I've had no burning flashes for a couple of days.  They are calming down. I just hope it continues. Anxiety has improved immensly during this time to being very near normal. I just need the leg pain to go as well now. Of course I could be speaking too soon. I could be just having a good couple of days. 

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sunnylou

Thanks Altostrata,

                                I am going to ask for a referral to a pain clinic, and try to get some physio. I think I have pudendal nerve problems due to my inability to sit, and by connecting with others with identical symptoms am almost certain. If it is then it is quite rare and many just dont find any relief. Even nerve blocks often last only a short time, and many don't work at all. Sufferers spend so much time, and money, get proded, and poked around but never benefit. This is the sad story I am finding out.it comes wih psycho social problems as well, and is a full time job dealing with the pain, and symptoms, which sounds about right.  

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sunnylou

Today is day 26 of up dosing the Gabapentin from 300mg back to 900mg. There has been massive improvements in anxiety, palpitations, and burning nerve pain which was a couple of weeks ago, very intense and happened on and off all day. Now it is happening here and there, and approx 1 out of 3 or 4 mornings upon waking. This I am extremely grateful for. 

 

There have also been improvements in how the Gabapentin is covering my original leg/thigh/buttock/hip/heel pain. It is much better in the morning again. 2-3 weeks ago I was almost limping first thing in the morning. Now I am getting through to 3-4pm before breakthrough pains occur, and they have been mild in the scheme of things. I have not been sitting down yet though, and have been laying on the bed regularly to get the weight off my feet. So maybe the Gabapentin might work like it once did given a little longer. I have to be able to sit without pain to declare this to be so.

 

Once I am stable I can then continue with the Risperidone taper. I have been taking 0.9mg as I made the first 10% drop from 1mg. The only problem is my bigger pills are running out so I need to start practicing breaking the smaller 'teva' brand up, I must attempt this in the next couple of days to avoid panick at the last moment. I nearly went back to taking the full 1mg out if frustration with this Gabapentin problem, and feeling so futile, but glad I didn't. Feeling like tapering Risperidone is possible today. Things must be looking up a bit!

 

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LexAnger

What a relief! Thank god!

I'm so happy to hear the updose is working well for you! 

 

Hope you will be able to sit without pain soon and move forward from here never return to the agony!

 

Hugs,

Lex

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sunnylou

Thanks Lex, 

                     Its great to hear from you.  Your encouragement means a lot! Hope you are as well as can be. I haven't bought a special cushion yet to try sit on as there are so many. I am still researching others experiences of different models. By the time I've read about them all I may not need one thkugh.....hopefully! 

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LexAnger

Hi again sunnylou, 

 

About the cushion. I mentioned earlier that a hard/firm chair is better than a soft one. I feel I didn't make it clear. For me, a solid wood chair with cushion is the best. I can't sit on a bear wood chair at all, neither the ones made of soft nylon. So if your chair is the hard wood type, a cushion will definitely help.

 

I'm seeing a new therapist. He said my pain is mainly caused by muscle spasm. I'm getting massage and doing strength exercise now. I will let you know if that helps.

 

Hope you are doing even better today.

Lex 

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sunnylou

Hi Lex.

        Iovley to hear from you. I wonder whether mine is caused by muscles contracting and affecting the nerves as well. Great to hear your having some massage on it. Can't wait to hear how it goes, excellent! The strength exercises sound interesting too. Hope it works amazingly!

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LexAnger

Without sure diagnose from all doctors and alike I saw, and for my complicated condition (injury to sciatic joints, muscle, lambar, and the pins and needles from wd), I searched up and down and found something I feel very likely the closest diagnose, at least partly. 

 

I'm going to share the info with you in the next few posts in case you feel it might be the case for you too. 

 

 It's called piriformis. A well defined condition.

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LexAnger

 

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LexAnger

 

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LexAnger

 

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LexAnger

Actually this is a better one for testing

 

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