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Melissa5000

Melissa5000: nerve/muscle pain/burning after fast taper

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Melissa5000

Hello all! I have been reading a lot on this website. 

 

I am a 43 year old woman from the Netherlands. Because of face ache after a rootcanal at the dentist that caused extreme pains for over a year they gave me lyrica and amitriptyline. 450 mg lyrica and 50 mg amitriptyline was built up within a year. Because of many bad side effects I had to taper my meds. 

 

In 2017, 29 th july I tapered 25 mg lyrica. Everything was fine. My dose was at that time 100 mg lyrica and 25 mg amitriptyline. 

 

When I tapered my last 25 mg tablet in september 2017 everything went wrong! I got extreme muscle pains in my arms and legs and sometimes just all over! My pain specialist said that I just had to wait and be patient and that the pains would disappear. So I waited. My pains improved a tiny bit. But not much.

 

9 th february 2018 I felt so dizzy. I was dizzy for weeks. When I forgot a 25 mg pil of lyrica the dizzyness went away. I jumpt to the conclusion that the dizzyness came from the lyrica. So I decided to taper from 100 mg lyrica to 75 mg lyrica at that day. (Now I doubt if it was from the lyrica, maybe the dizzyness was withdrawal from the amitriptyline.) From then it became even worse. I have musclepain and nerverpain everywhere especially in my arms and legs. Sometimes I am burning all over or just in my torso. I cry a lot. I can hardly function and suffer a lot of pain every day. 6 weeks ago I spoke to my pain specialist. She wanted me to wait for improvements and did not like to updose. But the daily pain is still horrible. 

 

Some other symptoms have improved:

 

Insomnia (from hardly any sleep to a few bad nights a week)

Tinitus (only very mild every now and then)

being irritated (gone)

fear (only very mild every now and then)

tingling (only mild every now and then)

electric feeling in my head (gone)

 

Now I doubt what to do.

 

Should I wait (mayby a few years) and hope everything settles down?

 

Or do a small reinstatement on the lyrica?

 

Maybe a small reinstatement on the amitriptyline? (I doubt that because I am allready totally off the med since 22 september 2017)

 

I cannot make up my mind and don't know what the best option would be. So I hope you can give me some advice. 

 

 

 

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Altostrata

Welcome, Melissa.

 

It sounds like you tapered the Lyrica and amitriptyline a the same time? It's hard to tell which kind of withdrawal you have, maybe both. Do you have any amitriptyline left?

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Melissa5000

Thank you for answering Altostrata. 

 

In september 2017 I tapered my last tablet of amitriptyline. So I am totally off the amitriptyline. It gave me many bad withdrawals a few days after I stopped. The worst was extreme musclepain and tendonpain and some burning all over my body. So I know that it is withdrawal from the amitriptyline. I was hoping that it would dissappear in half a year or so. But I was so wrong! I do have a few bottles of Sarotex Retard capsules left.  (= brand name for amitriptyline). But unfortunately Sarotex Retard is off the market. My pain specialist can, if needed, give me 10 mg tablets amitriptyline. (a generic). But I am not sure my body is able to take 10 mg after all the time I quit. It seems a bit too much for me. 

 

In february 2018 I tapered a 25 mg capsule of lyrica. From then my muscle pain/tendon pain/burning became much more intense. I got also extra nerverpain all over mij body but especially in my arms and legs. Tapering the lyrica was not such a good idea. I do have extra withdrawal since I tapered the lyrica capsule.  

 

Before I quit the amitriptyline, I could taper every few months a 25 mg capsule of lyrica. That gave me many withdrawals but it always disappeared. Now the withdrawals don't fade in a few months time anymore. 

 

The last time (before 9th february) I tapered 25 mg lyrica, was 29th july 2017. The withdrawals faded in a few months. So I thought that I could taper an extra 25 mg capsule on 9th february 2018 because there were more than 6 months in between. What was I wrong!! 

 

So now I suffer withdrawals from both meds. 

 

 

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Altostrata

We have seen that often reinstatement of the drug at a very low dosage can reduce withdrawal symptoms. If you were taking 25mg amitriptyline as your last dosage, you might try 1mg to start, see if it helps a little.

 

This topic explains how to take a very small amount of amitriptyline Tips for tapering off amitriptyline

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Melissa5000

Ok , clear. Thank you for the advice!

 

Now I'll have to try and see what happens. 

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Melissa5000

Here is an update.

 

I decided first to try to updose the lyrica. It was less than 3 months ago I tapered 25 mg lyrica. I estimated that reinstating that last tapered capsule would give me the biggest chance for succes. 

 

I started with 2,5 mg extra lyrica on my morningdose. I did not get a bad reaction. So I took also 2,5 mg extra on my eveningdose and my nighttime dose. So an updose of 7,5 mg lyrica.

The next day I clearly felt a small improvement. My mood lifted and my pain in mij limbs and body felt less intense. But the pain was still very severe. I also got a light nauseas feeling as a side effect on the second day of the updose. That lasted a few hours and then it faded away. Other side effects I noticed were a dry mouth, dry eyes and I felt slow and was a bit forgetfull and a little confused. 

 

4 days later I reinstated again 7,5 mg lyrica (so a total updose of 15 mg lyrica). 

 

4 days later I updosed again 7,5 mg.

 

Finally I updosed the last 2,5 mg.

 

So now I reinstated 25 mg lyrica. My current dose is 100 mg lyrica.

 

I still have muscle pain and nerve pain but the pain is less intense. I still have difficulties using my arms and hands. They hurt when I lift things up, do housekeeping or work on the computer. My legs hurt when I walk too much. That is allready after a few hundred meters. Even when I stand too long ( a few minutes) my legs start to hurt. The worst is the feeling of a storm of nevepain through my body when I moved a little too much. That is the worst. And also the burning pain in my fingers. My tendons in my fingers burn. (Or probably the nerves around my tendons.) My cryingspells improved a lot. 

 

In february 2018, when I was on 100 mg lyrica before, I did not have the feeling of the storm of nervepain tingling around my muscles (under the skin deep in the body). Now that I went back onto the 100 mg lyrica I stil suffer this symptom. I hoped it would clear up but it didn't. I wonder if I would have got this new symptom anyway when I would have stayed on 100 mg or not. Or that it was caused bij the taper of the 25 mg lyrica. The symptom started 2 months after I tapered 25 mg lyrica (around 5th of april). So it did not start immediately after I tapered. It showed up 2 months later. 

 

Now I am waiting and holding on this dose and hope to stabalize a bit more. 

 

I wonder if I should updose more or that the risk of a bad reaction would be too high. I am still very handycapped and I hurt all day every day. 

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Gridley

I would not updose any further but rather would hold where you are and wait to stabilize.  There is no way to predict how long this will take; it could be several months.

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Melissa5000

Hello Gridley, thank you for your advice.  I hope to stabalize a bit more on the storm of nerve pain.

 

The extreme muscle pain, burning pain and nervepain in my fingers I had allready before when I was on 100 mg lyrica in february 2018. Those symptoms will not dissapear with my last updose. They started in september 2017. But I am incertain if an updose to 125 mg lyrica would be dangerous. The last time I was on that dose was july 2017, a very long time ago. A small reinstatement of amitriptyline seems also risky because I stopped amitriptyline in september 2017. Is that too long ago? I read some people had a bad reaction when they were too far out.

 

I guess I will never know. The only way to find out is to try. I am not sure what I will do. At the moment I lean more towards doing a very long hold. I fear it wil take a few years before I can start to taper the rest of the meds. I feel handicapped and am in a lot of pain since september 2017. I hope it will improve. I did not see any improvement in musclepain, pain in my fingers and burning in the last 8 months. That makes me feel incertain. Other symptoms dissapeared since early withdrawal of faded. But these pains are exactly the same. No improvement! 

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Melissa5000

I am stil on 100 mg lyrica. 

 

Unfortunatelly I didn't improve any further. It stays like this.

 

My symptoms are: muscle pain, I get tired very soon when moving or standing or by using my arms, burning pain in my fingers/tendons in the fingers, a storm of nerve pain through my body and limbs whenever I dare to move a little bit. 

 

To be honest I don't feel better than in september 2017 when I crashed after I stopped the amitriptyline. Back then I was suffering severe muscle pain. I started to practise with a fysiotherapist. I did some modest fitness. It was tough but I could do it. Afterwards I surrfered heavy musclepains for 3 days. 

 

3,5 months later My system went into overdrive when I tried to do some fitness with the fysiotherapist. After an hour of light fitness I felt some dizzyness and a feeling of internal movement. That stayed for hours. So my situation became worse.

 

After a little over 6 months out my situation became even worse. After the lightest movement like walking a bit inside of the house or washing the dishes I feel a storm of nervepain through my limbs and body. That stays for many hours. Sometimes all day. 

 

Now I am very worried. People seem to improve over time. But my situation became worse. Is it more common that a person's situation gets worse even at 8 months out? Even worse than in early withdrawal? I am so worried that I will stay like this and that I will never heal. Since the beginning of april I am at my all time low. 

 

 

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Gridley

Since 2017, you have had three dose reductions, including a 50% drop of Lyrica, basically a cold turkey of 25mg Amitryptiline, and a further 25% drop of Lyrica.  Withdrawal symptoms can often be delayed after a too-fast taper, and it is likely that you are feeling worse as these drops catch up with you, making you feel worse instead of better as time passes.  So what you are experiencing, while certainly unpleasant, is not abnormal and in no way indicates that you will stay like this and never heal.  On the contrary, the fact that your pain is less intense and your mood improved is encouraging.  I would hold where you are for several months, making no further changes.

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Melissa5000

Thank you for answering Gridley.

 

I did not do a 50% drop of lyrica.

 

Since  22 september 2017 I stopped the amitriptyline.

 

9th februari 2018 I tapered 25 mg lyrica, a 25% drop. 

 

At the beginning of may 2018 I updosed 25 mg lyrica. ( So I did undo it).

 

The painful withdrawal symptoms are for the most part from the amitriptyline. The 100 mg lyrica helps a bit to soften those symptoms a little. So I intend to keep the 100 mg lyrica as long as needed for my withdrawal. 

 

Can I experience delayed or new worse withdrawal symptoms at 8 months out after stopping the amitriptyline?

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Melissa5000

By the way, the pain is less intense because of the updose. Not because it healed on its own. That's why I am worried. I don't see spontaneous  improvements over time. 

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Altostrata

Hello, Melissa.

 

I agree with Gridley, the updose in Lyrica is helping a bit. I would not increase it further.

 

It could be most of your symptoms are from going off amitriptyline. How old are the tablets you have? Look carefully at the label for the expiration dates.

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Melissa5000

I get every month a new prescription for lyrica. (So I always have fresh pills.)

 

The last bottle of Sarotex retard came in july 2017 from the pharmacy. 

A box with generic amitriptyline tablets is from september 2017. (Because Sarotex retard went from the market they gave me a generic.).

 

I did not know that it would be dangerous to take pills over date. I didn't think about that. Thank you so much for warning me.

My painspecialist in the hospital could however prescribe new amitriptyline pils if needed. 

 

But I never touched the amytriptyline anymore. (8 months out now)

 

So I should stay on 100 mg lyrica. Still suffering a lot. I hope it will improve one day. In this condition waiting to improve feels like ages. If I ever will improve of course. 

I read at this forum about people who are not improved (much) after a long period like ten years out. That scares me. 

 

 

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Altostrata

Please look at the Sarotex and amitriptyline packages for the expiration date. If it has not passed, you may wish to add a very small amount, perhaps 1mg, to the Lyrica.

 

It could be some of your symptoms are amitriptyline withdrawal.

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Melissa5000

The Sarotex retard 25 mg expires at july 2018. (One capsule contains 105 beads) (This brand is off the market.)

The Apotex Amitriptyline expires at july 2021. These are still available today.  There is a coating around the Apotex. Can I make a liquid from it in despite of the coating?

 

Question: Is it possible to reinstate medication that you didn't take for 8 months? Is it not too long ago? 

 

 

I allready know that most of my current withdrawal symptoms are from amitriptyline. That is for sure. 

 

 

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Altostrata

Great, it has beads in it. If I were you, I'd take 10 beads (that's about 2.5mg) of Sarotex Retard.

 

Did you used to take amitriptyline in the morning or evening?

 

Did it make you sleepy? If yes, I'd take it in the evening, perhaps with dinner.

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Melissa5000

The Sarotex retard worked steady for 24 hours because of the delayed release. The time of the day I took it didn't matter. But I took it always at 22.00. I think my best option is to devide the beads in 3 dosis a day. That immitates the delayed release. I guess that without the capsule the beads lose the delayed release. Just as a test I will take (with trembling knees) 1 bead and see what happens. If nothing bad happens I want to try 3 beads a day to begin with. (Just to make sure I don't get a very bad reaction. Updosing is always an option if nothing bad happens.)

 

Thank you very much for your advice. It is so hard for me to decide what to do as I am in the middle of this mess. As I am too involved I can't think always clear enough about my withdrawal situation. 

 

I will try a tiny bit of amitriptyline. So 1 bead to begin with. I take it easy. Now I have to wait and see what will happen. 

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Altostrata

No need to divide doses. The beads themselves have the delayed release on their coating. If you wish, you can put them into another gelatin capsule.

 

Trying 1 bead is fine. Please let us know how you're doing.

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Melissa5000

I took one bead and nothing has happened.  No bad reaction. I didn't notice anything. 

 

I took a second bead. 

 

Today I'll take three beads as a test. 

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Altostrata

Very reasonable. It will take at least 4 days for the drug to ramp up.

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Melissa5000

Yes amitriptyline takes a few days before it starts to work. It can even take upto 4 weeks for a maximum result. 

 

I want to try 3 beads a day for 4 days. 

 

I don't notice an improvement yet. But no bad reaction. The dose I try as a test is probably too low. Or maybe it starts to work later. 

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Altostrata

For a good test, take the same amount at the same time each day. Please let us know how you're doing.

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Melissa5000

I take my beads 3 times a day together with the lyrica. 

 

Today is al horrible day. I didn't sleep enough. And my right hand is burning very intensely. Also all my right fingers are burning. I can't use that hand. 

I cry al lot. I feel so hopeless. I am afraid  that the  reinstatement of the amitriptyline is too late because I am 8 months out. I am afraid it won't work. But still I want to try. 

But what are my chances? I am so afraid I will never heal.

 

Today I took  2 times one bead. Still no bad reaction. I want to updose to 6 beads a day because I think the dose is too low. ( 3 beads) Can I take tonight 2 beads instead of 1? 

 

 

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Melissa5000

Today I will take 6 beads.  No bad reaction.

 

I slept better last night. My right hand is still burning.

 

I had a dry mouth when waking up.  My toes burn. My left leg gets stabbing nervepain if I stand a little too long. I have musclepain and my body feels tired from a short trip on my bicycle to the supermarket. 

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Altostrata

Sounds like that's an improvement. It will take 4-7 days for the drug to get to full effect. Perhaps you should take 6 beads a day for 4 days, see what happens.

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Melissa5000

Thank you for your reply. I will try a few days 6 beads. The dose is very tiny. I don't know if this low dose can cause an inprovement?

 

I want to try to slowly updose to the 10 beads you suggested. I did not dare to take 10 beads in one step because I am 8 months out. But slowly updosing is what I want to try. I will stay on those 6 beads a day now for some days. Just wait and see like you said. I am so happy with your advice! It is very hard to overlook your situation when you are in the middle of this mess. 

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Melissa5000

Today I took again 6 beads. No problems.

 

My pains are still there. I feel a storm of nerverpain through my body when I move a little like walking inside the house or standing in the kitchen and making dinner. 

My right hand is still burning. I felt stabbing nervepain through my arms and legs. Mostly I sit at my desk. Typing is painful. 

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Altostrata

If you feel you want to updose to 10 beads, do it gradually as you've planned. Please be sure to keep notes on paper about your dosage and symptoms so you can see what works.

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Melissa5000

Today on 6 beads.

 

Painful burning hands/fingers/toes. 

 

Tired and musclepain after standing or walking inside the house. 

 

I am still suffering a lot. I don't notice  an improvement yet. I am so worried. What should I do?

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Altostrata

How about 10 beads?

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Melissa5000

Today I am on 9 beads. 

 

Still in a lot of pain. When should I expect an improvement?

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sunnylou

Hi Melissa,

                  Just wanted to say that I have just tried to taper Gabapentin too quick which is similar to Lyrics, and have unlike you updosed to my original doses in panick.  I am now struggling with horrible burning torso, arms, and shoulders even upon waking. Also my chronic leg pain came back so am unable to sit at all. That was why I was given it.

 

I am also on 30mg Amiltriptyline at night which I havent altered at all. The burning started 2 months after my first drop as well. It gets bad when I'm due to take a dose. I like you am worried I will be stuck like this forever. Its my 5th day of updosing so my body has had the 4 days to register it. I really sympathise with you, and hope to follow your progress to wellness. If I improve I will let you know.

Best Wishes

Sunnylou

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Melissa5000

Today I went to my general practioner. I told him about my pains. He said that I tapered a lot in the past years. Maybe too quick. I asked him about withdrawal. I said I thougt I had 8 months out still witdrawal pain from amitriptyline. 

He said it was not possible to have withdrawal 8 months out. He said withdrawal only lasts a few weeks. He did not want to give me amitriptyline. He said it was an old fashioned medicine. He said that nortrilen was alsmost the same but a newer better medicine. So he gave me 10 mg nortrilen. 

 

The nortrilen can be split. I crushed them in a pilcrusher to powder. I made a liquid from it. It is possible for me to updose this medicine very slowly. Or take a smaller amount. 

 

The  Satotex amitriptyline beads won't last for ever. 

I had problems in the past with generic amitriptyline. I tried it from 3 different factories. When I took it it caused sun allergy. I could not walk outside even in cloudy weather. I would get a horrible itch and tiny bumps on my skin. 

 

So trying nortrilen might be a good solution for me. What do you think? 

 

 

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Melissa5000

Hello SunnyLou!

 

You are suffering the same symptoms! Yes Gabapentine and Lyrica are in the same group of medicine. 

 

When I taper a capsule of lyrica or a capsule of amitriptyline my original problem, the face ache, becomes worse. I recognize that. After time the face ache improves again. 

 

That's interesting you said the burning started 2 months after your drop. 

 

When I tapered from 100 mg lyrica to 75 mg lyrica, 2 months later I had a new symtom, a storm of nervepain through my body. (I still have this symptom but it is less intense since I updosed to 100 mg.)The burning started to get worse immediatelly the next day. 

 

When I tapered from 125 mg lyrica to 100 mg lyrica I seemed to be fine. Almost 8 weeks later I dropped the 25 mg Sarotex amitriptyline. A few days later my burning hands and toes and torso started for the first time. I assumed the burning was from the amitriptyline. Now I am confused, maybe it was like you 2 months later from the lyrica.................

 

Maybe I need to try to updose some extra lyrica later. Thanks a lot for you reply. I will follow you too! Let's hope we improve soon a bit to make it more livable. 

 

 

 

 

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dj2010
20 minutes ago, Melissa5000 said:

Today I went to my general practioner. I told him about my pains. He said that I tapered a lot in the past years. Maybe too quick. I asked him about withdrawal. I said I thougt I had 8 months out still witdrawal pain from amitriptyline. 

He said it was not possible to have withdrawal 8 months out. He said withdrawal only lasts a few weeks. He did not want to give me amitriptyline. He said it was an old fashioned medicine. He said that nortrilen was alsmost the same but a newer better medicine. So he gave me 10 mg nortrilen. 

 

The nortrilen can be split. I crushed them in a pilcrusher to powder. I made a liquid from it. It is possible for me to updose this medicine very slowly. Or take a smaller amount. 

 

The  Satotex amitriptyline beads won't last for ever. 

I had problems in the past with generic amitriptyline. I tried it from 3 different factories. When I took it it caused sun allergy. I could not walk outside even in cloudy weather. I would get a horrible itch and tiny bumps on my skin. 

 

So trying nortrilen might be a good solution for me. What do you think? 

 

 

 

adding new drugs to a already compromised nervous system is risky, especially another antidepressant, are wanting to get off all drugs? if so then this seems like a bad move

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