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Coley32: off Amitriptyline still struggling


Coley32

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I was put on Amitriptyline originally for migraines. Over a 3 month period I tried 3 different drugs - 

 

Amitriptyline 25mg 10 days

Topamax (anti-convulsant) 25mg 28 days

Pamelor (TCA) 10mg 8 days

Amitriptyline 10mg - 20mg maybe a month (they told me I could take 20mg on bad days)

 

Two days after I stopped, I couldn't sleep the entire night. I called my doctor and they said because my dose was so low, it was fine to go off the way I did. I functioned for 3 weeks and then it hit me like the flu. 

 

It's been almost 7 weeks since and I have experienced:

 

Muscle spasms

Weakness in legs/parasthesia/leg pain

Electric sensations which feel like nerve pain in arms and legs

Insomnia

Body aches (worse in morning) 

Eye twitches

Loss of appetite

Light sensitivity - hard to look at anything on phone or computer

 

None of the doctors will acknowledge my health declined after I stopped. I have had so many tests including a trip to Columbia University for a neurological work-up, rheumatological tests, viruses, MRIs, thyroid, Lyme, glucose, etc. 

 

I am considering trying Lexapro liquid at 10 and then tapering down to see if it helps any of my symptoms. I am 32 years old and am not really functioning in my daily life. I just opened a business this year so I have to get my life back on track soon! My husband or family doesn't really understand and it makes it so much more stressful! 

 

Any thoughts or advice would be greatly appreciated! 

Edited by ChessieCat
formatted for easier reading

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

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  • Moderator Emeritus

Coley32 -- Welcome to Surviving Antidepressants (SA)

 

You are experiencing classic symptoms of withdrawal from a neuroactive medication. For more information about withdrawal symptoms, please read:

What is withdrawal syndrome.

Glenmullen’s withdrawal symptom list.

 

All psychiatric meds are neuroactive, including amitriptyline. Doctors are "mis-undereducated" about how people suffer when coming off these medications. I'm sorry that your doctor(s) believes the "no problem" rubbish. Please remember that any medication that acts on your CNS (central nervous system) should be tapered gradually to discontinue it. The discussions at these links explain why this is a good idea:

One theory of anti-depressant withdrawal syndrome

How your brain responds to psychiatric drugs - aka "Brain remodeling"

Youtube video, 4 minutes: Healing from antidepressants

 

We don't help people find new medications to treat medical conditions; our focus is on helping people "unpatient" themselves and on providing information so that people can safely taper off psychiatric medications. If you're looking for peer-support and ideas about migraine medications, you might want to head over to a site like Patients Like Me.

 

Some questions for you:

  • Why did you discontinue amitriptyline?
  • On what date (approximate is fine) did you discontinue amitriptyline?
Please include those details in a medication history signature:

A request: Would you summarize your history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-18 months particularly?

  • Any drugs prior to 18 months ago can just be listed with start and stop years.
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
  • Please spell out the months, e.g. "October" or "Oct"; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
  • Diagnoses and detailed symptoms are *not* necessary; they actually make it harder to understand your situation and history.
  • We ask for this information in your signature so that we can see it at a glance. A list is easier to understand than one or multiple paragraphs.
  • You can find instructions in this topic: Please put your withdrawal history in signature
  • If you are using a phone or mobile device, you need to switch to the "full" or desktop version of the site. Instructions are in Post 8 and Post 9
Adding a new medication such as Lexapro *may* not address your w/d symptoms because "Lex" and "ami" work in different ways on the CNS. Some people -- but not all -- get relief from withdrawal symptoms by reinstating a very small dose of the medication they discontinued. The links above (One theory, brain remodeling, healing from a/d) discuss why this is so. If you're interested in reinstating, please do not reinstate a dose just yet -- especially not your previous dose of 20 mg. Too high a reinstatement (RI) dose could worsen your symptoms. Please read about reinstatement in the discussion at this link:

About reinstating and stabilizing to reduce withdrawal symptoms

How long to stabilize after reinstating or updosing

 

 

I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but am glad that you found us.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Thank you scallywag, I REALLY do appreciate your time in sending me all of those informative links. I have seen the videos before but they were such a wonderful reminder as I ask myself daily if any improvement is being made. My family reminds me that it is but it is at a glacial pace.

 

I stopped the Amitriptyline because after a month in, I noticed pins and needles in my arms. Later, after I would take it at night, I would notice pins and needles in my feet. By morning, it was gone. It kind of freaked me out. I also have been trying to get pregnant for 4+ years so I figured it was best to be off. 

 

I do not want to take anything for my migraines, just to be relieved of these new symptoms since coming off the med. The worst one for me is the weakness in my legs. I used to go to the gym 4-5 days a week. I just rode an exercise bike for 5 minutes which made my legs weaker and more painful. My last dose of Amitriptyline was Nov 13, 2016. 

 

Regarding reinstatement, I am scared that I reacted poorly to the drug so don't want to exacerbate symptoms but I have considered. My doctor suggested Lexapro since it for me would be new to my body with less side effects. I DO NOT want to be on any drug. I just want my life back.

 

Again, I can't thank you enough for your time.

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

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  • Moderator Emeritus

I urge you to read up on Lexapro or escitalopram.  In my non-medical, layperson's opinion, Lexapro is perhaps THE SSRI medication drug to avoid unless absolutely necessary because

  • Lexapro is far stronger than other SSRIs
  • Of the SSRIs, the people tapering Lexapro and Paxil on this site *seem* to have the most difficulties during tapering.

Here's a link to a list of introductions of folks tapering Lexapro: Search results for tag = Lexapro.
 
Also, Tips for tapering off Lexapro (escitalopram).
 

 

About reinstating:
 

The reason we suggest very small doses is to deal with the issue of sensitivity. Because each person's CNS returns to the "no-drug" state at its own unknown pace, it's difficult to know what the right dose is. An appropriate "test" or "probe" dose would be far below 20 mg, your last dose, and probably in the range 1-5 mg.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Thank you scallywag. I appreciate the advice on Lexapro. It might just stay at the pharmacy. 

 

Even if it has been 9 weeks, do you think a reinstatement of Ami might help? I have the 10mg tablets. I could cut them in half for 5mg. OR I don't know anything about scales besides what I have read on this site but maybe that is something to try. I am very tempted.

 

I can not express to you how much your responses mean to me. I feel like no one really understands what is going on so the support on this site means a lot to me.

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment
  • Moderator Emeritus

Reinstatement is more likely to be effective the sooner it is done after the last dose. As I posted earlier, it helps many people but not all. You are still within the window where it is more likely to work than not.  On the other hand there are people on this site who have reinstated 6+ months after last dose and got relief from symptoms.

 

Keep in mind that you are unlikely to get an overnight positive result. It can take longer than 2 weeks to see improvement; see the link above about how long to stabilize. That's another reason to keep the dose low, if you choose to stop the reinstatement before seeing an improvement the impact of stopping is likely to be smaller than if you had tried a larger dose.

 

It's okay if you don't have a scale. Making a liquid from tablets works just as well.  Amitriptyline is "freely soluble" in water. Have a look at these topics about working with a DIY liquid:

Making a liquid from a tablet or capsules.

Using an oral syringe and other tapering techniques.

 

I'll get thoughts from other moderators about a reinstatement dose. Then we can give you some tips about how to make the liquid, i.e. how much water to use to simplify dosing.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment
  • Moderator Emeritus

okay, I've got a suggestion for you related to reinstatement: 2.5 mg.

To make a liquid, dissolve a 10 mg tablet in 20 ml water. Then withdraw 5 ml (¼ of the total liquid) as a 2.5 mg. dose. Keep the liquid in the refrigerator and shake it before taking each dose.

If you choose to reinstate, remember that you may not see an immediate improvement in your symptoms. That may take several weeks: 4-5 days for the medication to reach a steady daily cycle in your body and then another week or more for your CNS (central nervous system) to adapt to the reinstatement.

If you have a negative reaction, for example a return of the pins and needles or worse, discontinue the reinstatement and let us know.

 

Please keep notes on paper of your symptoms and the times of your dose(s). This post has a useful format for a daily log:
Take notes of doses and symptoms.

Please let us know what you choose and how things are going for you.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Hi i have been tapering amitriptaline now for over 2 years.

 

I was originaly like you put on it for migraines and then CT by doctor when i was getting side effects after taking it for 11 months.

 

I reinstated after 2 weeks. It wasnt perfect at all although the extreme withdrawl and waves slowed for me after about 6 months in total.

 

I am now making up liquid which has made the reduction alot more easier.

 

I am reducing every 3-4 weeks at 10% rate.

 

First thing to do like already suggested is to try to get yourself stabilsed then after while you can taper at a rate that your body can cope with.

 

There is alot of advice on the forum and from the members

 

Hold in there i thought i would not get through this and i am still here as tuff as it is.

Amitriptyline 20mg for 11 months for migraines. 24.11.14 CT from amitriptyline by doctor to swop to Citrolpam as doctor felt side effects of drugs were mental health issues. 12.14 Reinstated back to amitriptyline 2 weeks later after cronic withdrawl. 19.02.2015 Droped from 25mg to 20mg as drugs causing adverse effects of heavy sedation and anestetic propertys.03.03.15 Reduced 18.5mg to try and deal with sedation again. 08.03.15 Reduced to 17.5mg  28.03.15 15.7mg 12.04.15 14.9mg 19.04.15 14.2mg 26.04.15 13.5mg  2.05.15 12.8mg 9.5.15 12.1mg 15.05.15 11.5mg 21.05.15 11.0mg 24.05.15 10.0mg 2.6.15 9.0mg 4.6.15 8.6mg 13.06.15 8.1mg 20.06.15 7.7mg 27.06.15 7.3mg 4.07.15 7.0mg 9.07.15 6.6mg 13.7.15 6.3mg 19.07.15 6.0mg 24.07.15 5.7mg 31.07.15 5.4 8.08.15 4.9mg 15.08.15 4.4mg 22.08.15 4.0mg 29.08.15 3.6mg 06.09.15 3.2mg 13.09.15 2.9mg 21.09.15 2.6mg 28.09.15 2.4mg 05.10.15 2.2mg 12.10.15 2.0mg 22.10.15 1.8mg 26.10.15 1.7mg 2.11.15 1.5mg 9.11.15 1.4mg 16.11.15 1.2mg 23.11.15 1.1mg 10.12.15 1mg 1.1.2016 0.9mg 17.1.2016 0.8mg 01.02.2016 0.7mg 08.02.2016 0.6mg 14.02.2016 0.5mg 21.02.2016 0.4mg 01.03.2016 changed to liquid 1:1 ratio 0.4mg 8.03.2016 0.38mg 15.03.2016 0.36mg 20.03.2016 0.35mg 27.03.2016 0.32mg 08.04.2016 0.29mg 14.04.2016 0.27mg 23.04.2016 0.25mg  30.04.2016 0.23mg 07.05.2016 0.21mg 14.05.2016 0.19mg 28.05.2016 0.17mg 06.06.2016 0.16ml 13.06.2016 0.15ml 20.06.2016 0.14ml 27.06.2016 0.13ml 04.07.2016 0.12ml 11.07.2016 0.11ml 18.07.2016 0.10ml 25.07.2016 0.09ml 01.08.2016 0.08ml 08.08.2016 0.07ml 15.08.2016 0.06ml 22.08.2016 0.05ml 12.08.2016 0.04ml changed to 10:1 ratio 02.09.2016 0.036ml 24.10.2016 0.033ml  14.11.2016 0.030ml 01.01.2017 0.024ml 22.01.2017 0.022mg 12.02.2017 0.020mg 05.03.2017 0.018mg 26.03.2017 0.016mg 17.04.2017 0.014mg 07.05.2015 0.012mg missed few sig updates 09.09.2017 0.005mg missing few sig udates 29.07.2018 0.0001mg 17.02.2019 0.000006mg missed few updates 12.06.2020 0.0000000064mg 27.11.2021 0.0000000048mg 04.2021 0.0000000018mg 19.12.2021 0.00000000025641mg

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Thank you, Freedom15. I just saw your post. It has been 2 1/2 months. I have not gone back on anything but I am going to have to do something. The leg weakness is my worst symptom & has completely taken away my life. You are right, I feel like I will never make it through.

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment
  • Moderator Emeritus

Hi Coley, I saw your post in the asthenia topic
 

Found this searching under "leg weakness" as this & pins and needles has been my most troubling symptom. I've already been off a low dose for 2 1/2 months. How long did it take everyone else for improvement? Any advice?
Thank you!


Did you come across the topic on parasthesia: Parasthesia -- pins and needles, numbness, tingling, burning, etc.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Thank you so much, scallywag. I wonder how long this weakness takes to go away. I feel like it never will or always fear it's something else.

Per my drs recommendation, I started 10 mg Lexapro yesterday. It made me so extremely nauseous...sick through the night & now...on top of the horrible body aches/weakness I already had.

If anything, I will try to re-instate 2.5 Amitriptyline in a couple days.

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment
  • Moderator Emeritus

coley, you are likely to be better off with a reinstatement of amitriptyline than with introducing 10 mg Lexapro. Although they are both anti-depressants, they work in different ways. Many people find Lexapro challenging to taper off of.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Can I just cut my pill in 1/4ths instead of liquid? Going on 11 weeks...still deciding but the body pain is so bad in morning. I just cry in pain every morning.

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment
  • Moderator Emeritus

You can do cut your pill in quarters. There is, however, a risk of inconsistent dosing because it's difficult to cut a pill into 4 pieces that are exactly the same. Some people are sensitive to those small variations; others aren't. There's no way of knowing how YOU will react without trying it.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Just idea

 

Could you just make up a liquid for the 2.5mg ?

 

One 10mg tablet with 10ml distiled water will give a 1:1 ratio

 

Then take 2.5ml of liquid by using a syringe orally and that would be your 2.5mg Amitriptaine that you are wanting to reinstate at.

 

This will also help with the longterm tapering as well as you can reduce easier on the liquid and more precise.

Amitriptyline 20mg for 11 months for migraines. 24.11.14 CT from amitriptyline by doctor to swop to Citrolpam as doctor felt side effects of drugs were mental health issues. 12.14 Reinstated back to amitriptyline 2 weeks later after cronic withdrawl. 19.02.2015 Droped from 25mg to 20mg as drugs causing adverse effects of heavy sedation and anestetic propertys.03.03.15 Reduced 18.5mg to try and deal with sedation again. 08.03.15 Reduced to 17.5mg  28.03.15 15.7mg 12.04.15 14.9mg 19.04.15 14.2mg 26.04.15 13.5mg  2.05.15 12.8mg 9.5.15 12.1mg 15.05.15 11.5mg 21.05.15 11.0mg 24.05.15 10.0mg 2.6.15 9.0mg 4.6.15 8.6mg 13.06.15 8.1mg 20.06.15 7.7mg 27.06.15 7.3mg 4.07.15 7.0mg 9.07.15 6.6mg 13.7.15 6.3mg 19.07.15 6.0mg 24.07.15 5.7mg 31.07.15 5.4 8.08.15 4.9mg 15.08.15 4.4mg 22.08.15 4.0mg 29.08.15 3.6mg 06.09.15 3.2mg 13.09.15 2.9mg 21.09.15 2.6mg 28.09.15 2.4mg 05.10.15 2.2mg 12.10.15 2.0mg 22.10.15 1.8mg 26.10.15 1.7mg 2.11.15 1.5mg 9.11.15 1.4mg 16.11.15 1.2mg 23.11.15 1.1mg 10.12.15 1mg 1.1.2016 0.9mg 17.1.2016 0.8mg 01.02.2016 0.7mg 08.02.2016 0.6mg 14.02.2016 0.5mg 21.02.2016 0.4mg 01.03.2016 changed to liquid 1:1 ratio 0.4mg 8.03.2016 0.38mg 15.03.2016 0.36mg 20.03.2016 0.35mg 27.03.2016 0.32mg 08.04.2016 0.29mg 14.04.2016 0.27mg 23.04.2016 0.25mg  30.04.2016 0.23mg 07.05.2016 0.21mg 14.05.2016 0.19mg 28.05.2016 0.17mg 06.06.2016 0.16ml 13.06.2016 0.15ml 20.06.2016 0.14ml 27.06.2016 0.13ml 04.07.2016 0.12ml 11.07.2016 0.11ml 18.07.2016 0.10ml 25.07.2016 0.09ml 01.08.2016 0.08ml 08.08.2016 0.07ml 15.08.2016 0.06ml 22.08.2016 0.05ml 12.08.2016 0.04ml changed to 10:1 ratio 02.09.2016 0.036ml 24.10.2016 0.033ml  14.11.2016 0.030ml 01.01.2017 0.024ml 22.01.2017 0.022mg 12.02.2017 0.020mg 05.03.2017 0.018mg 26.03.2017 0.016mg 17.04.2017 0.014mg 07.05.2015 0.012mg missed few sig updates 09.09.2017 0.005mg missing few sig udates 29.07.2018 0.0001mg 17.02.2019 0.000006mg missed few updates 12.06.2020 0.0000000064mg 27.11.2021 0.0000000048mg 04.2021 0.0000000018mg 19.12.2021 0.00000000025641mg

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Freedom15- thank you! Been doing the 2.5, I have to be honest I took a 10mg pill the other night because I wake up in so much pain on 2.5. My legs feel weak. I'm so distraught and want my life back. I'm tempted to start back the 10 for a couple months then slow taper.

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment

One thing to be aware of is not to rush with changing the dose all time.

 

It takes 4 days for body to register the dose and will take few days to weeks for a stable dose to build up in your body.

 

It will take a while for you body to stabilise and you dont want to reinstate to high to then have to reduce again.

 

This was a mistake i made and have payed its price with such a long reduction now.

 

Its up to you tho as to what you feel is right..

 

Just be aware its about long term goals and not short term gains.

Amitriptyline 20mg for 11 months for migraines. 24.11.14 CT from amitriptyline by doctor to swop to Citrolpam as doctor felt side effects of drugs were mental health issues. 12.14 Reinstated back to amitriptyline 2 weeks later after cronic withdrawl. 19.02.2015 Droped from 25mg to 20mg as drugs causing adverse effects of heavy sedation and anestetic propertys.03.03.15 Reduced 18.5mg to try and deal with sedation again. 08.03.15 Reduced to 17.5mg  28.03.15 15.7mg 12.04.15 14.9mg 19.04.15 14.2mg 26.04.15 13.5mg  2.05.15 12.8mg 9.5.15 12.1mg 15.05.15 11.5mg 21.05.15 11.0mg 24.05.15 10.0mg 2.6.15 9.0mg 4.6.15 8.6mg 13.06.15 8.1mg 20.06.15 7.7mg 27.06.15 7.3mg 4.07.15 7.0mg 9.07.15 6.6mg 13.7.15 6.3mg 19.07.15 6.0mg 24.07.15 5.7mg 31.07.15 5.4 8.08.15 4.9mg 15.08.15 4.4mg 22.08.15 4.0mg 29.08.15 3.6mg 06.09.15 3.2mg 13.09.15 2.9mg 21.09.15 2.6mg 28.09.15 2.4mg 05.10.15 2.2mg 12.10.15 2.0mg 22.10.15 1.8mg 26.10.15 1.7mg 2.11.15 1.5mg 9.11.15 1.4mg 16.11.15 1.2mg 23.11.15 1.1mg 10.12.15 1mg 1.1.2016 0.9mg 17.1.2016 0.8mg 01.02.2016 0.7mg 08.02.2016 0.6mg 14.02.2016 0.5mg 21.02.2016 0.4mg 01.03.2016 changed to liquid 1:1 ratio 0.4mg 8.03.2016 0.38mg 15.03.2016 0.36mg 20.03.2016 0.35mg 27.03.2016 0.32mg 08.04.2016 0.29mg 14.04.2016 0.27mg 23.04.2016 0.25mg  30.04.2016 0.23mg 07.05.2016 0.21mg 14.05.2016 0.19mg 28.05.2016 0.17mg 06.06.2016 0.16ml 13.06.2016 0.15ml 20.06.2016 0.14ml 27.06.2016 0.13ml 04.07.2016 0.12ml 11.07.2016 0.11ml 18.07.2016 0.10ml 25.07.2016 0.09ml 01.08.2016 0.08ml 08.08.2016 0.07ml 15.08.2016 0.06ml 22.08.2016 0.05ml 12.08.2016 0.04ml changed to 10:1 ratio 02.09.2016 0.036ml 24.10.2016 0.033ml  14.11.2016 0.030ml 01.01.2017 0.024ml 22.01.2017 0.022mg 12.02.2017 0.020mg 05.03.2017 0.018mg 26.03.2017 0.016mg 17.04.2017 0.014mg 07.05.2015 0.012mg missed few sig updates 09.09.2017 0.005mg missing few sig udates 29.07.2018 0.0001mg 17.02.2019 0.000006mg missed few updates 12.06.2020 0.0000000064mg 27.11.2021 0.0000000048mg 04.2021 0.0000000018mg 19.12.2021 0.00000000025641mg

Link to comment

This is SO hard to know what to do!! 

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment

I'm going to ask a stupid question....can reinstatement help physical symptoms (leg weakness) as well? I am discouraged when I read someone else's comment that her legs were weak 4 years later but she had been on different drugs for year and years. It looks like Tigger (who I messaged) had leg weakness, reinstated and then it went away. As I'm sure you all know, when experiencing a physical condition, your mind plays tricks on you making you think it is something that will be permanent. 

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

Link to comment

Its vary hard to know if reinstatement will help any of the symptoms.

 

That is why its best to start low and give it some time to see if theres an improvement or if need to stop due to adverse event.

 

I reinstated and have been left with loads of side effects from medication that i didnt have prior to the CT by my doctors.

 

And its hard to know if they will be permanent or go once i finish my taper.

 

The key for you tho is to not juggle medication about and stick to one thing and deal with that at a time and like already suggested

maybe reinstate at 2.5mg and wait for few weeks/month to see if theres any improvement.

 

I know how hard it is when you feel really ill and want to just do something to quick fix the situation and with these meds and our bodys that

doesn't happen.

 

Hope you get some break from it soon.

Amitriptyline 20mg for 11 months for migraines. 24.11.14 CT from amitriptyline by doctor to swop to Citrolpam as doctor felt side effects of drugs were mental health issues. 12.14 Reinstated back to amitriptyline 2 weeks later after cronic withdrawl. 19.02.2015 Droped from 25mg to 20mg as drugs causing adverse effects of heavy sedation and anestetic propertys.03.03.15 Reduced 18.5mg to try and deal with sedation again. 08.03.15 Reduced to 17.5mg  28.03.15 15.7mg 12.04.15 14.9mg 19.04.15 14.2mg 26.04.15 13.5mg  2.05.15 12.8mg 9.5.15 12.1mg 15.05.15 11.5mg 21.05.15 11.0mg 24.05.15 10.0mg 2.6.15 9.0mg 4.6.15 8.6mg 13.06.15 8.1mg 20.06.15 7.7mg 27.06.15 7.3mg 4.07.15 7.0mg 9.07.15 6.6mg 13.7.15 6.3mg 19.07.15 6.0mg 24.07.15 5.7mg 31.07.15 5.4 8.08.15 4.9mg 15.08.15 4.4mg 22.08.15 4.0mg 29.08.15 3.6mg 06.09.15 3.2mg 13.09.15 2.9mg 21.09.15 2.6mg 28.09.15 2.4mg 05.10.15 2.2mg 12.10.15 2.0mg 22.10.15 1.8mg 26.10.15 1.7mg 2.11.15 1.5mg 9.11.15 1.4mg 16.11.15 1.2mg 23.11.15 1.1mg 10.12.15 1mg 1.1.2016 0.9mg 17.1.2016 0.8mg 01.02.2016 0.7mg 08.02.2016 0.6mg 14.02.2016 0.5mg 21.02.2016 0.4mg 01.03.2016 changed to liquid 1:1 ratio 0.4mg 8.03.2016 0.38mg 15.03.2016 0.36mg 20.03.2016 0.35mg 27.03.2016 0.32mg 08.04.2016 0.29mg 14.04.2016 0.27mg 23.04.2016 0.25mg  30.04.2016 0.23mg 07.05.2016 0.21mg 14.05.2016 0.19mg 28.05.2016 0.17mg 06.06.2016 0.16ml 13.06.2016 0.15ml 20.06.2016 0.14ml 27.06.2016 0.13ml 04.07.2016 0.12ml 11.07.2016 0.11ml 18.07.2016 0.10ml 25.07.2016 0.09ml 01.08.2016 0.08ml 08.08.2016 0.07ml 15.08.2016 0.06ml 22.08.2016 0.05ml 12.08.2016 0.04ml changed to 10:1 ratio 02.09.2016 0.036ml 24.10.2016 0.033ml  14.11.2016 0.030ml 01.01.2017 0.024ml 22.01.2017 0.022mg 12.02.2017 0.020mg 05.03.2017 0.018mg 26.03.2017 0.016mg 17.04.2017 0.014mg 07.05.2015 0.012mg missed few sig updates 09.09.2017 0.005mg missing few sig udates 29.07.2018 0.0001mg 17.02.2019 0.000006mg missed few updates 12.06.2020 0.0000000064mg 27.11.2021 0.0000000048mg 04.2021 0.0000000018mg 19.12.2021 0.00000000025641mg

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  • 2 weeks later...

Just to report....I went back on 5mg for a week. It was still miserable (body pain) so I went back to the 10mg for the last week. How long should I hold here to see if it helps any? My legs still feel weak and I still have shooting nerve pain. Muscle spasms aren't as bad.  EXCEPT now when I wake up in the morning, both arms are completely asleep. It is such a scary feeling. STILL not back to work or doing much of anything around the house. 

2016: 

Aug 15  - Aug 25  - Amitriptyline

Aug 26  - Sept 26 - Topamax 

Sept 27 - Oct 4  Pamelor

Oct 13 - Nov 13 - Amitriptyline

 

Currently taking Alprazolam .25 at night to sleep (have only been since Jan. 7)

 

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Hi Coley32

 

I think you need to stop at a dose and let your body try stabilise.

 

It may take quite while for everything to settle if its going to poss weeeks or months.

 

It took me quite few months for this to settle down to what i would call stable within the situation.

 

Also my stable has been not to be symptom free its been about being able to function still in life and being able to slowly reduce.

 

You may find that things may or maynot subside.

 

Plus what i found was adding the drug to my body after it had time to alter the neuro chemastry little mean that it reacted differently and

and i was plaqued with side effects and still am.

 

I am not saying this will be the case for you at all its just to be aware of what people consider as " stable " ver well.

 

Its really hard cause each case is different all people told me at the beginning when i first come here was to be patient and not chop and change

and its a slow process.

 

I am still here 2 bit years on and still fighting this situation so it is possible.

 

Hardest thing i have ever done to be far and never want do this again which is why i am going slow and steady.

Amitriptyline 20mg for 11 months for migraines. 24.11.14 CT from amitriptyline by doctor to swop to Citrolpam as doctor felt side effects of drugs were mental health issues. 12.14 Reinstated back to amitriptyline 2 weeks later after cronic withdrawl. 19.02.2015 Droped from 25mg to 20mg as drugs causing adverse effects of heavy sedation and anestetic propertys.03.03.15 Reduced 18.5mg to try and deal with sedation again. 08.03.15 Reduced to 17.5mg  28.03.15 15.7mg 12.04.15 14.9mg 19.04.15 14.2mg 26.04.15 13.5mg  2.05.15 12.8mg 9.5.15 12.1mg 15.05.15 11.5mg 21.05.15 11.0mg 24.05.15 10.0mg 2.6.15 9.0mg 4.6.15 8.6mg 13.06.15 8.1mg 20.06.15 7.7mg 27.06.15 7.3mg 4.07.15 7.0mg 9.07.15 6.6mg 13.7.15 6.3mg 19.07.15 6.0mg 24.07.15 5.7mg 31.07.15 5.4 8.08.15 4.9mg 15.08.15 4.4mg 22.08.15 4.0mg 29.08.15 3.6mg 06.09.15 3.2mg 13.09.15 2.9mg 21.09.15 2.6mg 28.09.15 2.4mg 05.10.15 2.2mg 12.10.15 2.0mg 22.10.15 1.8mg 26.10.15 1.7mg 2.11.15 1.5mg 9.11.15 1.4mg 16.11.15 1.2mg 23.11.15 1.1mg 10.12.15 1mg 1.1.2016 0.9mg 17.1.2016 0.8mg 01.02.2016 0.7mg 08.02.2016 0.6mg 14.02.2016 0.5mg 21.02.2016 0.4mg 01.03.2016 changed to liquid 1:1 ratio 0.4mg 8.03.2016 0.38mg 15.03.2016 0.36mg 20.03.2016 0.35mg 27.03.2016 0.32mg 08.04.2016 0.29mg 14.04.2016 0.27mg 23.04.2016 0.25mg  30.04.2016 0.23mg 07.05.2016 0.21mg 14.05.2016 0.19mg 28.05.2016 0.17mg 06.06.2016 0.16ml 13.06.2016 0.15ml 20.06.2016 0.14ml 27.06.2016 0.13ml 04.07.2016 0.12ml 11.07.2016 0.11ml 18.07.2016 0.10ml 25.07.2016 0.09ml 01.08.2016 0.08ml 08.08.2016 0.07ml 15.08.2016 0.06ml 22.08.2016 0.05ml 12.08.2016 0.04ml changed to 10:1 ratio 02.09.2016 0.036ml 24.10.2016 0.033ml  14.11.2016 0.030ml 01.01.2017 0.024ml 22.01.2017 0.022mg 12.02.2017 0.020mg 05.03.2017 0.018mg 26.03.2017 0.016mg 17.04.2017 0.014mg 07.05.2015 0.012mg missed few sig updates 09.09.2017 0.005mg missing few sig udates 29.07.2018 0.0001mg 17.02.2019 0.000006mg missed few updates 12.06.2020 0.0000000064mg 27.11.2021 0.0000000048mg 04.2021 0.0000000018mg 19.12.2021 0.00000000025641mg

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Coley,

 

Wanted to add my 2cents worth.  I reinstated seroquel after 3 months off in early December 2016.  The first month showed NO improvement. Second month I began having short windows, but new symptoms of wd.  I'm just beginning the third month and I am seeing longer windows.  But I am far from healed; yesterday was a horrendous day, but today was much better, better than in a long while.  I suspect it will be at least two or three more months before I can even think of tapering.

 

My point is that, as Freedom suggested, you need to hold for a while, especially if you are not seeing adverse effects of the reinstatement.  Since you had been off ami. for a while, it may take several months for you to feel "normal" again.  Get into the mindset that what you are feeling will go on for a while, but it WILL get better.  I have had many on my thread telling me this and it was so hard to believe them at that time because I was feeling so bad.  I thought that I would never feel OK again.  And here I am, with life becoming slowly livable again (touch wood!).

 

To reiterate, hold at that dose for a while until you see improvements.  And don't even think about testing the waters of tapering yet.  Twice I decided to drop minuscule amounts to see if I could handle tapering, but my body was not having it and I scurried back to my original dose, my confidence shot. 

 

Hope this helps.  Good luck.

PAST

Gabapentin:  about 6 months in 2015, 300-900 mg, cold turkeyed Sept 2015 (at same time dc'd Klonopin)

Klonopin: June 2014- Sept 2015; 1mg tapered over 6 mths, dc'd at 0.25mg, withdrawal hellish (perhaps because of concurrent dc of gabapentin)

Mirtazepine: Jumped off at 2.4 mg. (stable in 8 months).

Seroquel:  June 14 - July 24, 2016, 25 mg alternate nights; smaller doses for shorter periods. Total use about 3 months 

Lamictal: March 19, 2018 - 1 mg; March 23 - 1.25 mg; April 6 - 2mg. Discontinued at 2 mgJuly 1, 2018 due to Steven Johnson Syndrome.

 

CURRENT

Supplements: Vit D, turmeric

Naturethroid: 65 mcg for hypothyroidism

Trazodone: Oct 2015 - June 2016; 75 mg tapered over 2 mths, intense w/d after 3 weeks. Reinstatement: 07/25/16 - 25 mg; updosed 08/03/16 - 50 mg;  10/01/16-  62mg; 03/24/17 dropped to 50 mg (stable in 2.5 months)

                           Current psych meds: Trazodone 50 mg

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