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Rhiannon

"I had a level done and the result came back as <0-5 ng/mL (ref is 60-120).   I was told the level is 'undetectable.' (I thought I was taking 9 mg!).   Do you know what  undetectable means exactly?  Does it mean 0? or .5-4.9"

 

Well at least one question I can answer! In this case "undetectable" means "below the linearity cutoff for whatever instrument they used to analyze your blood specimen." And it looks like the cutoff is 5 ng/mL. At least, at the lab where I work, that's how results below linearity are reported.

 

Basically, the instrument manufacturer claims it is able to detect as far down as 5 ng/mL. In reality at those really low dilutions, meh, your mileage will vary a lot. It's probably most accurate between like 20 and 200. It's probably not designed to tweak out small variations at the bottom end of the range. Manufacturers always try to stretch out their reportable range to sell their machines, but in my experience with those damned things, I would definitely not bank on anything at the extremes of what they claim to be the reportable range. It could be give or take like 5 ng/mL at the bottom. Your result is probably more like 0-10 in actual fact and that is literally anything from zero to ten. I can't say for sure since I don't operate that analyzer, but on the analyzers I do operate, that's what I'd say.

 

The test is designed to measure the levels in people who are actually taking the full 40-60 mg dose and I think it's probably quite accurate in that neighborhood, although lab results are always more variable than people realize. Its always "give or take". The goal is to get a measurement that's within a certain clinically useful range so doctors can know what action they need to take if any. Lab results generally succeed in doing that.

 

i think you should not assume that when you started using the liquid form you did a CT. I don't think that's what the lab result is saying. If liquid compounds of duloxetine are unreliable, you may not be getting as much as you thought, or you may be getting erratic doses, but I don't think the lab result can be interpreted to say that you are not getting any at all, mainly because the lab result is saying "we have no idea how much she is getting because we can't measure very precisely at this level."

 

Which I realize is not especially helpful but I believe that having good information is important when you're dealing with these drugs and tapering, so at least I can give you information about blood chemistry analyzers and how the results are reported.

 

Why did you get the test done? What form of duloxetine are you taking now? 

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Rhiannon

Okay, just skimmed the last page of your thread. Are you still using the liquid or did you quit taking any form of duloxetine altogether?

 

 

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Erell

Oh sweet Guilietta 

 

I just read what you wrote on Shininglights thread and it feels sad.

You have To protect yourself : don't Feel obliged to come on my post, for example.

 

I don't know how To help you, but I wanna give toi hugs!

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Guilietta

Hi Rhi,

 

You are enormously helpful and knowledeable. Thank you. We have more information. The bottom line is that the lab results indicate that there is some drug in my blood but it is not known. Again, I believe the MD was incorrect when he said the results meant 'undetectable.'

 

I think I understand most of what you said about the lab results.   I had no idea you worked in a lab. I wonder if you like your work and have to draw specimens.

 

Interesting that lab analyzers are not more accurate in this day and age. I believe they also need to calibrated and maintained to be accurate as well.  If it matters here - This lab test is not FDA approved  and was performed at the Mayo Clinic (it took 10 days to process!).

 

1 hour ago, Rhiannon said:

Your result is probably more like 0-10 in actual fact and that is literally anything from zero to ten.

 

Interesting. That is a bigger span to derive dose informatiaon.

 

1 hour ago, Rhiannon said:

The test is designed to measure the levels in people who are actually taking the full 40-60 mg dose

 

Thanks. I was wondering what the reference range was based on. The lowest strength of duloxetine is 20 mg - which is what I was taking- so maybe the 60 ng correlates with 20 mg?

 

1 hour ago, Rhiannon said:

i think you should not assume that when you started using the liquid form you did a CT.

 

I agree.

 

1 hour ago, Rhiannon said:

the lab result is saying "we have no idea how much she is getting because we can't measure very precisely at this level."

 

The liquid is multiple things, including erratic. 😕 Even though I shake it vigorously before I take it - I think I don't injest the same amount of drug with every dose. In fact, on the bottle top - I find little flakes of powder.

 

More about the test:

 

1 hour ago, Rhiannon said:

Why did you get the test done?

 

To learn how much drug (if any) I might be getting (my idea) so I could plan to transition to pellets (also my idea).  I had been thinking that as I was getting closer to 0 (I believed I was at 9 mg at the time of the test) - I would benefit from the extended release pellets.  I wanted to transition to a dose in pellets as close as possible to what I was getting.

 

Note that the test was done 3.5 hours post dosing with food - if that is useful.

 

1 hour ago, Rhiannon said:

Are you still using the liquid or did you quit taking any form of duloxetine altogether?

 

I am still using the liquid and taking '6' mg (2 ml).

 

I  started reducing from '9' mg on 9/26.  I have had more anxiety, tinnitus, GI, some jitters and pins and needles.

 

Thank  you, Rhi. :)

 

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Guilietta

Hello all,

 

I modified my signature to be more accurate - or as accurate as I can be. I modified my dose too.

 

Thanks to  @Rhiannon's expertise and vast knowledge of lab results and devices -  the lab test results indicate that I am getting a low amount of the drug but doesn't know how much. It doesn't indicate I am getting zero.

 

I made dosage changes on 9/26 and today. Currently I am taking 7.5 mg. As most of this  7.5 mg is not being abosrbed - my lab value is low and I don't know the mg I am getting.

  • From 9/26 I reduced from 9 mg to 6 mg. I experienced increased anxiety in the afternoons and loud tinnitus and other symptoms. 
  • I added  1.5 mg and took 7.5 mg today and I hope this helps. I'll stay here for a few days as this tiny amount of drug gets in my system.

Sending hugs and thanks to you all.  😁

Giuilietta 

 

 

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Erell

Thank you sweet Guilietta for passing on my post! As you already know, all supports here is unvaluable!

 

Take care of you,  and only read other post if you Feel you can take it :)

 

Huge hugs

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Guilietta

Hello Erell,

 

I am glad you understand why I am trying to trim my hours. It is easy to become absorbed in this and it makes my situation worse now.

 

I did a little better yesterday with this but really should close down at 5 p.m. and try to forget about this.

 

On  a sour note -

I learned that my seizure medication -lamotrigine ER (the extended release formula - not just lamotrigine - will be unaffordable for me starting in January 2020 so I will have to change seizure medication. The insurance company has increased the price so that it will cost me $4000 more a year -at least. Lamotrigine is hard to get off of - as you will see from others on SA.

 

Another complication...

 

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Erell

Hi Guilietta 

Yes, I totally understand  : listen To your feelings.

 

I hadn't realized how different is the situation in USA before your post...

I'm not sure I understand what 'extended release formula" means.

Hope someone with more knowledges Will help you To build a plan for this change.

 

Hugs 

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Guilietta

Hello Erell,

 

Thank you for the thoughtful and sweet note.

 

2 minutes ago, Erell said:

I hadn't realized how different is the situation in USA before your post...

 

It's pricey. I like the words thievery and extortion.

 

Insurance (which we pay for or employers may) may not cover all diagnostic tests, including labs (blood tests), visits for specialists, 2nd opinions, procedures and medications (and anything else I don't know of I am sure!). The insurance is expensive. For people who collecting retirement or medical disability (called Social Security) - for insurance premiums they pay $134 a month for any hospital visit coverage. For medical visits and tests the cost is about $225 a month. Drug coverage is about $122 a month. On top of that there are 'co-pays' for patients for drugs (total: $481 per month). Ouch. For drug copays - or drugs out of pocket - I paid last year I think (about $350). My grand total for 2018 is more than $6100. And that's one person only.

 

Medicine is big business here. I think it accounts for about 1/6th of the US economy.

 

I hope you are having a pleasant day, perhaps getting outside a bit and slept better last night. :) 

 

Your friend - with big hugs 💓

Giuilietta

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Gridley
54 minutes ago, Guilietta said:

Medicine is big business here.

I'm so sorry you're having this Lamotrigine situation.  The medical system in the U.S. is truly perverse.

 

Since I don't live in the U.S., I have no drug insurance there.  I get my Lexapro here over the counter (not cheap).  Ativan can be a little iffy, as they are times when the whole country runs out, so I stock up as best as can.  Imipramine isn't available in South America and entails a visit to the U.S. where believe me it is not cheap, though nothing like your new drug price.

 

Good luck on switching to a new drug.

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Guilietta
1 hour ago, Gridley said:

I get my Lexapro here over the counter (not cheap).  Ativan can be a little iffy, as they are times when the whole country runs out, so I stock up as best as can.

 

I cannot imagine how much money drug companies need to make to be satisfied. The biotech companies that start out with novel drug concepts, research and develop them - and then are bought out by big pharma (a lot of these start ups do NOT want to be bought out).

 

Thanks for your kind wishes.

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Rhiannon
On 10/2/2019 at 12:21 PM, Guilietta said:

Hello all,

 

I modified my signature to be more accurate - or as accurate as I can be. I modified my dose too.

 

Thanks to  @Rhiannon's expertise and vast knowledge of lab results and devices -  the lab test results indicate that I am getting a low amount of the drug but doesn't know how much. It doesn't indicate I am getting zero.

 

I made dosage changes on 9/26 and today. Currently I am taking 7.5 mg. As most of this  7.5 mg is not being abosrbed - my lab value is low and I don't know the mg I am getting.

  • From 9/26 I reduced from 9 mg to 6 mg. I experienced increased anxiety in the afternoons and loud tinnitus and other symptoms. 
  • I added  1.5 mg and took 7.5 mg today and I hope this helps. I'll stay here for a few days as this tiny amount of drug gets in my system.

Sending hugs and thanks to you all.  😁

Giuilietta 

 

 

 I want to be clear here: a lab result of "less than linearity" does not NECESSARILY mean zero, but it CAN mean zero. It doesn't literally mean "undetectable" but it does mean "unmeasurable by this testing system." It doesn't mean that it couldn't be detected by a different testing system that was designed to measure very low levels. But it does literally mean "we have no answer for you with this testing system."

 

I'm sorry this is so indefinite but it's just how those analyzers work.

 

If it was done at Mayo, those instruments are probably being maintained well and the result is probably pretty accurate, so the answer it is giving you is saying zero to 4.99999 and it can't tell you what it is in that range. (please don't tell your doctor I said it could be as high as 10, that's a very unofficial guess and if you say that, anything else you quote from me will have no credibility. Unless your doctor has worked in a lab he or she probably doesn't understand about linearity at the low end of the range.)

 

On another note:  When you cut from 9 to 6 (more or less)--that is a 33% cut which is much bigger than the recommended "no more than 10%." I am not surprised that you had WD symptoms. Please hold on your current reinstated 7.5 mg dose (which is a 16% reduction from 9, still quite high) until you have a chance to recover. 

 

And yet another note:  About the lamotrigine, can you get the regular non-extended-release form? The half life of lamotrigine is 29 hours, so if you take it twice a day you should be able to keep a pretty good steady state. There will be an adjustment period, of course, but that would be much easier than trying to switch to a completely different drug, I should think. What does your doctor say about that?

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Guilietta
2 hours ago, Rhiannon said:

"we have no answer for you with this testing system."

 

I see. Thank you.

 

2 hours ago, Rhiannon said:

so the answer it is giving you is saying zero to 4.99999 and it can't tell you what it is in that range. (please don't tell your doctor I said it could be as high as 10

 

No need to be concerned about my mentioning to the MD re: 10, Rhi.

 

2 hours ago, Rhiannon said:

Please hold on your current reinstated 7.5 mg dose (which is a 16% reduction from 9, still quite high) until you have a chance to recover. 

 

I will hold - thanks.  I am notating my symptoms. I will update my signature with the decrease from 9 to 6 then up to 7.5.

 

2 hours ago, Rhiannon said:

About the lamotrigine, can you get the regular non-extended-release form?

 

This is the good news. Insurance covers the the non-ER at an affordable price. I had taken the non-ER form but it didn't work as well as the ER. I will discuss with my MD when I see her in November.

 

 

 

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Erell

Hi sweet Guilietta 

 

Well i must say I'm really dumbfounded...I really did not realize how different our situation was. 

I have never paid anything for my meds or for a médical appointment. Actually I do by paying taxes To french state, but not directly. 

I already thought you were  strong, but now that I understand, all American people on WD are my heroes. Truly.

 

That is definitely a motivation for feeling better : beat these evil drug companies and win!

 

Lot of love!

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Frogie

Guilietta:

 

I have been reading your posts to other people and just wanted to say that you are a beautiful person inside and out.

 

You say such kind words to have people feel better and better about themselves.

 

 I’m glad I was able to read such kind posts. 

 

Thanks for being you😊

 

Take care,

 Frogie xx

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Guilietta

Hello @Erell

 

8 hours ago, Erell said:

Actually I do by paying taxes To french state, but not directly. 

 

We do that too! I wish they covered my medical expenses (or more of them).  To give you an idea - as you have the unique perspective of a French citizen -

 

Personal income taxes are based on personal income, and vary according to the state you live in (the 50 states). Tax deductions and loopholes save people some money. Taxes we pay (there are a ton more too):

  • Federal government (USA),
  • State government (each of the 50 states -with the exception of 2 or 3)
  • Local governments (town or city). 
  • Social security and medicare (medicare is the US pension system)
  • Taxes on sales - in the UK this was the VAT

Americans pay a lot of taxes but people don't realize this. The average American pays more for government than they pay for food, clothing and health care combined. Yikes!

 

That being said - I think peole everywhere pay too much in taxes. 😂

 

Drug companies develop some products that treat or cure illnesses and enable very sick people to lead normal (or some semblance of normal) lives. It is about cost/benefit for each individual. These ADs and benzos, however, create far more problems than they solve! 

 

@Frogie

49 minutes ago, Frogie said:

You say such kind words to have people feel better and better about themselves.

 

 I’m glad I was able to read such kind posts. 

 

What kind words. I hope my words help you and others. They even help me. :) Sometimes we need a lot of understanding emotional support. And maybe some words from all of us can help us think more positively about ourselves and know that our situation will improve - and we are making that happen.

 

I am grateful for the strength and support of everyone in my long journey. 💗

 

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Frogie
1 hour ago, Guilietta said:

Hello @Erell

 

 

We do that too! I wish they covered my medical expenses (or more of them).  To give you an idea - as you have the unique perspective of a French citizen -

 

Personal income taxes are based on personal income, and vary according to the state you live in (the 50 states). Tax deductions and loopholes save people some money. Taxes we pay (there are a ton more too):

  • Federal government (USA),
  • State government (each of the 50 states -with the exception of 2 or 3)
  • Local governments (town or city). 
  • Social security and medicare (medicare is the US pension system)
  • Taxes on sales - in the UK this was the VAT

Americans pay a lot of taxes but people don't realize this. The average American pays more for government than they pay for food, clothing and health care combined. Yikes!

 

That being said - I think peole everywhere pay too much in taxes. 😂

 

Drug companies develop some products that treat or cure illnesses and enable very sick people to lead normal (or some semblance of normal) lives. It is about cost/benefit for each individual. These ADs and benzos, however, create far more problems than they solve! 

 

@Frogie

 

What kind words. I hope my words help you and others. They even help me. :) Sometimes we need a lot of understanding emotional support. And maybe some words from all of us can help us think more positively about ourselves and know that our situation will improve - and we are making that happen.

 

I am grateful for the strength and support of everyone in my long journey. 💗

 

I appreciate all the kind words you say and the help and encouragement you bring to the site. I am very appreciative of it.

 

Even though they are not directed to me, when I read them they always make me feel better, even on my darkest days.

 

Thank you very much💜😊

 

I hope you are doing well.

 

Take care,

 Frogie xx

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Rhiannon

Hi Guilietta, just checking in, about to go start my busy day and back to work after my vacation. Thinking of you, have a great day!

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Guilietta
2 hours ago, Frogie said:

Even though they are not directed to me, when I read them they always make me feel better, even on my darkest days.

 

Hello Frogie - they are meant for everyone. :)   I also read posts of others, and even though they are not written to me, they are positive, give hope and direction for healing and wisdom about handling life's ups and downs.   I hope you are going to have a pleasant afternoon.

 

Giuilietta :)

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Guilietta

Hello Rhiannon,

 

I hope you had a very pleasant first day back at work. I am sure your coworkers were happy to see your shining face. :) Did you get the massage too? I wonder if you use the hot stones. 

 

I am doing OK. 😊   I am up late working  - but want to finish this post. I can't wait to go to bed. 😴

 

I feel really terrible about this long post. I feel guilty because I know you support other people and you also have a day job.   When you have a chance - would you mind taking a look and letting me know what you think. 

 

I have hypothesized that I may be at .9 mg - or that I may be at none - based on some facts and assumptions.

 

********************

Hypothetical - .9 mg (+/- 5%)?

  • Assumption:  I am swallowing what I believe is 9 mg of drug.
  • About 90% of the drug is released in an acid environment if the enteric coated beads are damaged - in a lab setting. I don't know how this differs in a human subject.  ;)  This is in the apple sauce article in cymbalta tapering on SA.
  • Assumption: ~10% of my duloxetine dose survived
  • The lab reference range is 60-120 and Lilly PI's recommended dosing is 60 mg/day up to 120 mg/day. 
  • Assumption:  60 mg = 60 ng/mL, thus 1 mg = 1 ng/mL
  • My test result indicates I am between 0 and 10 ng/mL - and .9 ng/mL fits in that range.

 

************************

Duloxetine decomposition - From Lilly's PI -

  • "In extremely acidic conditions, cymbalta, unprotected by enteric coating, may undergo hydrolysis to form naphthol."  I don't know if if this is all of the drug or a portion of it  (could this be the 90% like the apple sauce article?). Napthol is a chemical compound 'used chiefly in dyes, drugs, perfumes, and insecticides.' 😳
  • If 100% of the drug breaks down into napthol - then maybe my lab result is zero.

Depending on the likely outcome - or your judgment - this comes to taking  0 beads or as many as  5 beads a day.

 

Thanks again. I hope you have something nice planned for the weekend.

 

Giuilietta 🤗

 

 

 

 

 

 

 

 

 

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Erell

Quick kiss To thank you for your strenght 😙

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Guilietta

Doing OK today other than rining in the brain (tinnitus). 

 

Bit of apprehension about this weekend's activities and unnecessary work and grief - when I would rather be doing other things important to me. Hate to sound selfish - but I do not like jumping through hoops and walking over egg shells. This means no time to relax, sit and write gratitude, stretch, etc.

 

Trying to be positive - At the same time I am glad to help others - even though I would appreciate using my time as I want to - not as others do. I am also grateful that I can do these things - when others perhaps can't now but wish they could.  🤔

 

There is still laundry to do and some errands to do today - before starting dinner. Gulp. And I'm running out of steam. OK then. Enough whining from me.

 

Have to dash. Hugs to all.  🤗

 

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Erell

Hi sweet Guilietta!

 

I don't know if I'm right but I think I've read somewhere that you had moved back To your parents ' house. 

 

Would you agree To tell me how it goes with them? How you deal with their fears? How it is To live with them? ...

 

If you don't Feel comfortable about speaking of it, It would be ok. I really don't wanna upset you. 

 

Have à nice day ! What is this work you're talking about? And these weekend activities?

 

😙

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Guilietta
2 hours ago, Erell said:

I don't know if I'm right but I think I've read somewhere that you had moved back To your parents ' house. 

 

Would you agree To tell me how it goes with them? How you deal with their fears? How it is To live with them? ...

 

Good day, dear Erell,

 

I am living with my parents for the moment, yes, and I am glad to be here. My father has been sad - as yours - he has said, 'I hate to see you going through this.' It does make him sad.  This is a little long. Sorry about that andmaybe some repeats.

  • My confidence AND determination that I will win this battle. I told him I am going to 'win'.  I reminded him (and myself and others many, many times) of this when he saw me having a lot of  pain from anxiety, jitters, insomnia, panic, struggling to function, focus on conversation (listening and responding), etc.  -
  • Continued explanation that getting off these drugs is a struggle for at least 50% of peole (I think about that many - maybe more) . I think he was in disbelief. I gradually expalined this - and how these meds affect the brain and why recovery is so hard.
  • How these drugs work - in my limited ability - that you get off them too fast - feel so terrible and then the MD says you have a relapse or unmasking. I hold him this was another LIE fed to me and others - and perpetuated by the medical establishment. 
  • I told him that I had been advised by the MD that this would be very hard so I had chosen to do this in spite of this. I ws going to stay the course even though it was hard. 
  • Continued to show strength and defiance about this whole situation. That I was not going to be victim of the medical establishment
  • After I learned about SA - I told him about it - and there are people around the world who are struggling with this - and SURVIVING. And I would too.
  • Failure was not an option. :) 

When I had good days - I showed that I was finding happiness and slowly gettign better.

 

The 'last' VERY bad wave was a month in the summer. I told my sibling because I thought I might need his help. He was mad at the whole situation. He doesn't understand why tapering is important and the consequences of CT. But I was glad I told him so he knew I might need his help and support. 

 

A weight lifts when we come out and tell people.

 

I hope this helps you. It is a lot of words.

 

Have you decided about staying with your parents for a while? Maybe letting them know that WD is part of stopping a medication (prescribed legally!) and it does make us 'sick' while our bodies adjust to living without it.

 

Giuilietta

 

 

 

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Erell

Hi Guilietta 

 

Thank you very much, I really appreciate.

I admire so much your détermination!

1. Actually,  I don't have To convince them about tappering because I don't know if I Will have the confident To tapper again. I have to convince them that the best for me now is To hold my current dose,  even if I'm misérable. And they don't get the slow part.

I fear that if I would live with them they would try To convince me To take other drugs. My mum wants me To take benzos To Feel better. Or they would try To convince me To updose again. 

 

2. I sent some articles To my dad and told him about this forum, but he hasn't practiced English for years and he doesn't understand. + they trust doctors and all their théories.

 

3. I don't want To stay with them for a while, at least not until i get better. I couldn't bear their fears and sadness. 

 

 

I'm curious : do you work ?

 

Ps: I'm sorry I'm realizing this maybe shouldnt be on your thread but on mine.

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Guilietta

Could you copy/paste your messsage to your thread? And I will respond thre? I was told by mods it is best to keep thigns about your situation on your thread so it is all in one place. I think that makes sense. Then I will respond to you later if I have time - or else tomorrow. I am going out this afternoon. Does that make sense about copy/pasting? I thinkif you mention me like @Guilietta then I get a anotification to reply to your thread?

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Guilietta

Hello @Rhiannon

 

I hope your week is going well and the reinstatement is going well.

 

My status;  OK except for anxiety and related symptoms on Sunday night. It was at dusk - starting to get darker- I am not sure of where I am to find the freeway home. I don't like being out at night (which is somethign I would like to overcome) as well.

 

Stress over past few days - emotional morning (ie., sobbing) - without apparent trigger. Other nuisance symptoms.

 

On 10/4/2019 at 10:31 PM, Guilietta said:

I have hypothesized that I may be at .9 mg - or that I may be at none

 

Is my hypothesis logical/reasonable on my dosage reasonable?

 

Thanks

 

Giuilietta 😊

 

 

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Guilietta

Notes about dosage: currently taking 7.5 mg (2.5 ml) - however likely dosage absorbed is extremely small (labs far below reference range) since 10/2. Previously dropped from 9 mg to 6 mg around 9/28 - maybe caused WD symptoms so went up to 7.5).

 

Symptom update:

 

10/3 - 7.5 mg

  • 6.30 am Get up.
  • 7 am Breakfast and morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.15 am duloxetine ~3 mg (1 ml)
  • 12 pm lunch
  • 1.00 pm gabapentin 300 mg. Auras. Anxiety. Irritable. Generally overwhelmed.
  • 2.00 pm duloxetine ~4.5 mg (1.5 ml)
  • 4.45 pm Auras, tinnitus, irritable, lots of nausea, tingling on scalp, chills, tinnitus
  • 6 pm dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed

10/4- 7.5 mg

  • 6.30 am Get up.
  • 7 am Breakfast and morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.15 am duloxetine ~3 mg (1 ml)
  • 11 am. Lightheadness/dizzy/leg stiffness-ache - trouble to balance/walk - foggy thinking
  • 12 pm lunch
  • 1.00 pm gabapentin 300 mg
  • 2.00 pm duloxetine ~4.5 mg (1.5 ml)
  • 4 pm. Anxiety, nausea, pins/needles on arms and hands and scalp; tinnitus
  • 6 pm dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed

10/5- 7.5 mg

  • 6.30 am Get up.
  • 7 am Breakfast and morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.15 am duloxetine ~3 mg (1 ml)
  • 11 am. Tinnitus
  • 12 pm lunch
  • 1.00 pm gabapentin 300 mg
  • 2.00 pm duloxetine ~4.5 mg (1.5 ml)
  • 6 pm dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed

10/6- 7.5 mg

  • 6.30 am Get up.
  • 7 am Breakfast and morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.15 am duloxetine ~3 mg (1 ml)
  • 12 pm lunch
  • 1.00 pm gabapentin 300 mg & duloxetine ~4.5 mg (1.5 ml) (note: out this afternoon - took dulox early)
  • 5-5.30 pm. Anxiety, auras; tinnitus; pins and needles; auras and anxiety decrease when heading home
  • 6 pm dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed & donut. sugar craving.

10/7- 7.5 mg

  • 6.30 am Get up.
  • 7 am Breakfast and morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.15 am duloxetine ~3 mg (1 ml)
  • 12 pm lunch
  • Binge carbs & sugar
  • 1.00 pm gabapentin
  • 2.30 pm duloxetine ~4.5 mg (1.5 ml)
  • 2.30 - rest of afternoon: pins/tingling on limbs and scalp; bad tinnitus
  • 6 pm dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed

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thelegend

Hey @Guilietta, do you find your symptoms decrease later in the day. From your notes you don’t mention them as much later and I was curious if that was because they got better.

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Guilietta

Anxiety and tinnitis are generally worse later in the day (mid to late afternoon).  I think has been the case throughout this roller coaster ride except in the 'beginning' when things were bad most of the time. One thing I've tried to do to ameliorate this is to have a snack of protein & 20-30 g of whole grains.

 

I don't know if this is due to cortisol levels or glucose levels or just something else.

 

do you have any ideas about this

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Cocopuffz17
28 minutes ago, Guilietta said:

Anxiety and tinnitis are generally worse later in the day (mid to late afternoon).  I think has been the case throughout this roller coaster ride except in the 'beginning' when things were bad most of the time. One thing I've tried to do to ameliorate this is to have a snack of protein & 20-30 g of whole grains.

 

I would say cut out the whole grains. The nutrition plan I follow says they are terrible for causing inflammation in the body. Throw some millet, sorghum, or hemp seed in there instead. 

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Guilietta

Thank you @Cocopuffz17 for the suggestion. I am going to look into dietary recommendations on SA.

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Cocopuffz17
1 hour ago, Guilietta said:

Thank you @Cocopuffz17 for the suggestion. I am going to look into dietary recommendations on SA.

No problem, you are welcome. 

 

I know 100% nutrition changes from The Plant Paradox by Dr.Gundry are the only reason I am off this medication this time. I tried in the past and was not able to. Even now when my nutrition slips I pay the price with withdrawals. 

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Guilietta

@Cocopuffz17

 

Both diabetes specialist and an RD re recommend whole grain consumption as I do not have celiac or other 'officially' recognized illnesses (i.e., prolonged WD). I do eat soy milk/goat milk yogurt and don't know how inflammatory these are.

 

Do you have htoughts on xylitol vs sugar (to sweeten yogurt)? I don't know which is worse....or if honey is better.

 

I do better when I abstain from refined carbs and sweets. However I have a lot of days when I crave refined carbs and  sweets so this is really hard to avoid - esp as fall is here. I had been eating biscotti (nonni's brand) which doesn't have a lot of sugar - but does have refined flour.

 

I have information on food which I can post later.  I have been told that lots of protein is important to activating receptors.

 

 

 

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Cocopuffz17
3 minutes ago, Guilietta said:

@Cocopuffz17

 

Both diabetes specialist and an RD re recommend whole grain consumption as I do not have celiac or other 'officially' recognized illnesses (i.e., prolonged WD). I do eat soy milk/goat milk yogurt and don't know how inflammatory these are.

 

Do you have htoughts on xylitol vs sugar (to sweeten yogurt)? I don't know which is worse....or if honey is better.

 

I do better when I abstain from refined carbs and sweets. However I have a lot of days when I crave refined carbs and  sweets so this is really hard to avoid - esp as fall is here. I had been eating biscotti (nonni's brand) which doesn't have a lot of sugar - but does have refined flour.

 

I have information on food which I can post later.  I have been told that lots of protein is important to activating receptors.

 

 

 

 

No offence to your doctors, but they are taught wrong. I was told for years my nutrition was fine and was not the cause of my health issues. I changed my nutrition and have myself a healthy microbiome and boom I felt the best I’ve ever felt in my life. Which gave me the courage to come off the medication(which I thought I would never ever do because I was told I needed it for life). 

 

Yes, the addiction to sugar is hard. With WDs being the hardest thing in my life to go through, eliminating sugar was the second hardest thing and the WDs from that were extremely tough, but can be done! I am proof! 

 

Xylitol is way better and recommended in the book I follow. 

 

I would spend the $15 and read the book The Plant Paradox by Dr.Gundry, it saved my life. It challenges everything we know about food and in the end it’s the only reason I am off my medication, my autoimmune disease is reversing and still employed full time. 

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Guilietta

I found this link -https://gundrymd.com/plant-paradox-shopping-list/

 

A year ago I quit sugar (although it has been creeping back and will be expunged (again) starting today).

 

Do you have trouble with 72% cocoa?  It still has a lot of sugar - and 72% gives me the shakes - even if I have 1 oz.

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