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FarmGirlWorks

Great news on the cut, @wantrelief! And good news that the curcumin is helping. I was just looking at your signature and you are now below 50% of starting dose -- congrats.

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wantrelief

Thank you for your message @FarmGirlWorks!  I have made progress with my taper, slowly but surely.  I was so scared I wouldn't be able to taper at all given how destabilized I am, so am pleased to have gotten to this point.  However despite this progress, I am feeling the same as I did when I started this taper so that is difficult.  I try try try to trust this process and have faith that there will be some positive change to my baseline at some point.  Your own recovery process has helped me keep the faith.  Thank you so much for your continued friendship and encouragement. 

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Rosetta

Wantrelief,

How are you?  I hope you are doing ok.

Rosetta

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wantrelief

Thank you so much for your message, @Rosetta.  I appreciate your thinking about me and asking how I am doing.  I am trudging along.  I am now dealing with a constant headache that varies in intensity.  I was hoping to make another cut this past Sunday but have been bombarded with some bad pain so am waiting until that subsides.  So my taper is going even more slowly than it was previously which is very frustrating given that I have so many symptoms that I believe are because of the drug. All of this can feel very overwhelming and impossible at times.

 

It sounds like you are coping really well considering you are still dealing with some intense symptoms all whilst navigating living in a different country. You are very brave, Rosetta!

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Gridley
On 9/24/2019 at 11:02 AM, wantrelief said:

I try try try to trust this process and have faith that there will be some positive change to my baseline at some point.

 

It's very good that you're able to taper.  I wouldn't worry about feeling the same as when you started the taper.  It's a slow, frustrating process.  

 

I understand your impatience at having to delay because of symptoms.  Delay is common, but you were wise to heed what your body was telling you.  I get impatient too.  It's a slow, slow process but you are getting there.

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wantrelief

Thank you so much for your support and encouragement, @Gridley - I really appreciate it. 

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Rosetta

Thinking of you -Rosetta

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Rabe

Hi WR...

As frustrating as it is I am glad you put your taper on hold until you feel better.  

I did the same recently and am so glad that I did and even now, feeling some better, wish I could put it off a bit more.  Our bodies can only take so mych

I think and the tapering and WD alone really push them to the max much less anything else.

Thinking about you so much.  Hope things have improved some for you my dear friend!💜

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wantrelief

Update:  This past week, the headache pain has been more manageable if I take curcumin throughout the day (meaning I haven't had to take any other pain relievers which I try not to take but when the pain is bad I do resort to taking something).  Last night was one month from my last cut, so given the pain was in a more manageable place I thought I would do another cut.  I was thinking of trying smaller more frequent cuts, around 1.25% a week for four weeks to see if this would keep the headache pain in a more manageable place and at the same time be able to make more than a 2.5% cut in a month.  

 

So last night I cut 1.26% and this morning woke up with a horrible headache.  I can't believe that small cut would cause such an immediate reaction and, of course, I don't know that it is the cause but it is concerning.  I will ride it out knowing at some point it will get back to a more manageable place but I am worried I am not going to be able to make much headway with this taper.  I am feeling frustrated and scared about how I am going to get off this drug which is paramount given it is no longer "working" and I am having pretty bad baseline symptoms as it is.

 

I am starting acupuncture next week to see if that can help.   

 

Basically this headache pain has taken an already difficult situation to an even more challenging place.  I am trying to keep up hope that this will all work out in the end  but it is not easy.  

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apace41

WR:

 

I'm sorry that the headache pain has reacted to the most recent cut.  Don't assume that this means you are destined for headaches all the way down.  I never cease to be amazed how symptoms start and stop with no apparent rhyme or reason.  All you can do is the best you can to accept them and deal with them.  In that regard, I'm glad the curcumin is helping.  You can try increasing your dose to see if it helps offset the increased pain.

 

Just remember -- you are doing this!

 

Best,

 

Andy

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wantrelief

Oh Andy, thank you very much for your supportive message.  

 

18 minutes ago, apace41 said:

Don't assume that this means you are destined for headaches all the way down.  I never cease to be amazed how symptoms start and stop with no apparent rhyme or reason.

This is true, there is the possibility the headache will stop at some point during the taper.  

 

18 minutes ago, apace41 said:

All you can do is the best you can to accept them and deal with them.

Yes, I am trying to do this.  It is challenging as the pain seems to automatically spike my already existing symptoms - particularly anxiety and SI - but I will keep working on the coping side of things.

 

18 minutes ago, apace41 said:

You can try increasing your dose to see if it helps offset the increased pain.

Are you referring to the curcumin or the citalopram?  I am already taking a lot of curcumin - 3,000 mg a day.  In my research I couldn't find anything that said there was a maximum amount or that a higher amount would be detrimental but am a bit concerned I am taking so much.  I was planning on asking the acupuncturist if she had any information as she is a naturopath as well.  

 

Unfortunately, when the pain is really bad, the curcumin (even at the amount I am taking) doesn't seem to help much.

 

18 minutes ago, apace41 said:

Just remember -- you are doing this!

Aw, thanks Andy.  I do remind myself that I am doing this, even if it is little by little.  I am just in such a miserable state as it is that I feel somewhat desperate to move this along.  But, alas, it does not appear my head is going to cooperate at this time.

 

I really appreciate your on-going support.  It helps to know you are there/here.

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apace41
7 minutes ago, wantrelief said:

Are you referring to the curcumin or the citalopram?

 

LOL, certainly not the citalopram.  

 

8 minutes ago, wantrelief said:

 I am already taking a lot of curcumin - 3,000 mg a day.

 

I've seen at least one cancer study that resulted in a recommendation of 3,600 a day.  I don't think I've ever seen a case of "curcumin toxicity".  The average Indian diet contains about 2000-2500 mg a day.  I think you can safely try a little more but you can check with your medical team.

 

Best,

 

Andy

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wantrelief
Just now, apace41 said:

LOL, certainly not the citalopram. 

I didn't think so but thought I'd double check!  🙂

 

Just now, apace41 said:

I've seen at least one cancer study that resulted in a recommendation of 3,600 a day.  I don't think I've ever seen a case of "curcumin toxicity".  The average Indian diet contains about 2000-2500 mg a day.  I think you can safely try a little more but you can check with your medical team.

Oh that is interesting....thank you for the information.  I will try a little more and see if it helps.  

 

Thanks again for all of your help!

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wantrelief

Update:  Last week after one bad headache day, the pain became more manageable so I forged on with my experiment of trying another small cut this past Sunday.  This week the headache has been really bad again, unfortunately.  I did increase my curcumin intake to 3,500 mg a day but it doesn't seem to help when the pain is bad.  I have had to resort to taking my migraine medication (Maxalt) most days this week.  Hopefully the farther away from the last cut I did, the pain will go back to a more manageable level.

 

I also have discovered that my generic clonazepam has changed manufacturers again.  UGH.  So I am going to start switching over tomorrow over a 9-day period.  This will be almost 1 week from my last cut.  Hopefully the switch will go smoothly.  I last had to do this in January and it was fine.

 

I will wait a bit before tapering again to make sure I am stable from the generic switch.  It is discouraging that my progress has been stalled over the last couple of months but at least I was able to taper a little bit.

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brassmonkey

Increasing your curcumin will probably make matters worse.  A common side effect of large doses of curcumin is headaches.  I would suggest greatly reducing it for a while and then take a much smaller dose if you need to continue taking it.

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wantrelief

That is interesting, @brassmonkey.....thank you for the information.  I don't think the larger curcumin dose is worsening anything but I'll keep monitoring it and will reduce it if needed.  

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apace41
On 11/3/2019 at 2:00 PM, brassmonkey said:

A common side effect of large doses of curcumin is headaches. 

 

I've only seen it referenced as an "infrequent" side effect, Tom, but you may be right.  I've never seen it have that effect on anyone that has used higher doses for what it's worth.

 

Best,

 

Andy

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Rabe

Hi WR,

Oh WR I am so sorry about your headaches!  I hope that your migraine medicine and/or reducing the Curcumin is helping you some.  You have been 

tapering so incredibly!!  Perhaps the generic change came at a good time in the sense that you will be holding a bit and perhaps that will help your headaches? (not that there ever is a 'good' time to switch generics! 😡🙄

When I had to switch the CLonazepam to Actavis I have to say that it went well...I hope that is the case for you as well.  The pharmacist told me that if you look at the ingredients (inactive as we know the main) the amount of them is in the order they are listed.  It helped me find a generic that had the same ingredients in the same order which was unusual.  Obviously they are not exactly the same but I found it to not be too bad switching.  Just wanted to share that for what its worth.  It meant going to another pharmacy but its been worth it.  And then my doctor wrote the rx for a larger dose of the CLonazepam even though I dont take a larger dose.  That way we are being able to build a stock of this generic so that if it happens again we will have a little leeway.

Always thinking about you, WR, and will be more so with prayers that your headaches and switch go well!

On 11/1/2019 at 10:26 AM, wantrelief said:

I will wait a bit before tapering again to make sure I am stable from the generic switch.  It is discouraging that my progress has been stalled over the last couple of months but at least I was able to taper a little bit.

Im sure it is discouraging to have your taper stalled.  When you say your've been able to taper a little bit I want to tell you that I think you have continued to taper A LOT!  You have so much strength and courage and resilience, WR!  I hope you can own that and be truly proud of it, as we all know it is so so challenging!  I personally think it amazing all the progress you have made, WR, in the midst of so much.  

Take care my friend.  Love and hugs to you!!💜  

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wantrelief

Hi @Rabe!  It was lovely to receive your sweet and supportive message.....thank you so much for everything you said - it really helps.  I recognize that I have made some progress with tapering.  I think it is that I have felt consistently unwell for awhile now and when I am not tapering I tend to feel more stuck/hopeless plus overwhelmed with having such a long journey ahead.  But there isn't anything I can do about it at the moment so am trying to accept that and will carry on with tapering when I can. I do hope you are right and holding during this generic switch will help ease the head pain so maybe it is a blessing in disguise. Anyway, Rabe, your message came at a good time as I was feeling kind of down about this process and where I am at so your words helped lift my spirits.  I will pop by your thread and see how you are doing.  It is good to "see" you here again. 💖

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Rabe

Hi WR...thank you again SO much for stopping by with your always lovely support.  I am so grateful!

On 11/15/2019 at 10:17 AM, wantrelief said:

some progress with tapering.

You have made such incredible progress...I mean in less than two years you are below half your dose.  That is remarkable and I want you to know that you offer  me so much hope as I too have such a sensitive system and pretty much feel unwell no matter tapering or not...just a matter if how unwell.  And I too must taper slowly...has been 3% so far with the Viibryd but I know that will drop, as you have, as time goes on but thats ok.  It is still moving forward and that is what is most important..and you have done that.   I will say  this SIBO news in itself has hit me hard as I fear moving backward with meds and foods and infections historically setting me back along the way.  But have to believe in long run it will be better.  

On 11/15/2019 at 10:17 AM, wantrelief said:

I think it is that I have felt consistently unwell for awhile now and when I am not tapering I tend to feel more stuck/hopeless plus overwhelmed with having such a long journey ahead.  But there isn't anything I can do about it at the moment so am trying to accept that and will carry on with tapering when I can.

I am so sad for you when reading this WR...it is SO hard! My heart is so with you!!😢 but 👍as well for you my dear friend.  The hopelessness is challenging to say the least and it is good to share it and talk about it I think.  Stuffing all that doesnt help.  Getting it out is helpful...I hope so anyway.  I wish you could do it more often, though I understand as I tend to kind of 'hide' when not feeling well...have always been that way I guess.But I want you to know because I do understand you can be up or down and its ok with me because I think you are truly a most special lovely person and I love hearing from you and talking with you no matter what...its all acceptable to me.

 

On 11/15/2019 at 10:17 AM, wantrelief said:

will carry on with tapering when I can.

and that's all you can do WR.  I think it is good to listen to your body and you do that well and feel that speaks to where you are now with your taper!! Yay for you!!  Many, including myself, have had faster tapers but in the end I think time is lost because the system is SO upendedm so you are wise!

 

On 11/15/2019 at 10:17 AM, wantrelief said:

I do hope you are right and holding during this generic switch will help ease the head pain so maybe it is a blessing in disguise.

I hope so too, WR...I really really do.  Take care.  Let me know, ok?  Love and hugs to you!  And continue to take good care of you!!💜 

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