grandmaD: turtle here

[ladybug]

Gran, I am curious as to how you track your symptoms? For instance, you say that breathlessness was the worst it's been since 2011. Do you count the number of days you have a symptom, add it up and then compare it to other drops that way or do you rate each symptom each day and then take an average? I've started a symptom journal and I'm wondering what would be the best way to track symptoms so that I can compare them to other drops like you do. For now I'm just describing daily symptoms and tracking number of days on dose and cycle days.

[divalee]

Grandma

 

I read what you wrote to AussieGirl and boy you are spot on. I am 3 years off and still struggling with WDs. You and AliG have convinced me to stay strong...cause sometimes I feel maybe I should go on something......I push that though away straight away but suffering makes you think that way....I am sorry for AussieGirl - everyone was against her trying to ride it out and I suppose she is suffering so much - that she just gave in.....

 

 

 

Thank you again for that post and to AliG too.......bless you.

 

 

 

Love

 

Lee (f)

 

If happy little bluebirds fly

 

Beyond the rainbow

 

So can.......you.....and.....I

 

 

 

tears are just flowing - as they do most days......xxx

[grandmaD]

That's exactly how I feel, that it seems it gonna to be like this regardless what I do, and only option is to continue the journey, enduring the pain until the end of it. Hopefully there is one.

I often wonder this you know - and often think that trying this and that and the other just gives us something TO DO during the process!  I think all we can do is to persevere and not give up and be determined to quit no matter what we suffer and to accept it if we can, I know that's not easy!

That is great to hear, that many of your symptoms are getting less over time! It give me hope too.

I'm glad you had good days to regenerize and lock some good memories!

Yes, this is the first year I have been able to say I could enjoy something!  I never dreamed when I began this that it would take almost 5 years to get to this point!

Is the breathlessness associated with energy level and / or heaviness/ sedation? I had milder version of that when I was heavily sedated, feeling my heart is heavy and slow to catch up. It always comes about 7-10 days after each drop when I know another drop is due, as the new drop will clear that up quickly in a day or so.

I'm not sure if it is associated with energy level, it does make me feel less inclined to want to do things when I have it, but I think there have been times I have watered the garden, which requires energy and still had it.  I'd have to check back thru my notes on that.  I have definite days when I wake up and I feel like a ton of lead, but I think that is different.    It isn't due to being sedated as I am not on any other medication.

Are you doing drops every 7-10 days???

I am going to post a bit more about the breathlessness later.  Hope you have some good days!

[grandmaD]

Ladybug, you got it right on both counts!  You are a very bright girl.  I will attempt to attach what my updates look like (blank ones) so you can use them as your guide.

 

First I have a daily update, with a list of all my symptoms.  If I have any of them each day I put a check next to them.  Sometimes I will add if it is mild, mod or severe - (intensity).You might want to put extra checks for the number of times it happens a day - (frequency). 

 

Then, as you guessed, I tally it up each week on a "totals" one.

 

Then I transfer the totals to another weekly update sheet, so that at a glance I can see weeks 1 through to 8 for each symptom.

 

I also have another weekly update sheet for all the tapers for week 1 and another sheet for week 2 and so on, so at a glance I can see how I am compared to previous weeks of that same week.

 

At the end of the taper, I have a  taper update where I add up all the symptoms totals' for weeks 1 to 8 and get an average.  That way I can see what my averages are for each taper.  This is very helpful because if symtpoms get bad, I can look back and if it is as good as or better than previous averages, I am encouraged to do another drop.  I can also tell if it is worse than previous symptoms and might want to hold longer.

 

Now, I hope the attachments will work, because it might be difficult to understand without seeing the tally sheets.  I will use a separate posting so I can put a heading on each one and that might also make it easier. 

 

I think you will find it very helpful to help you know where you are at exactly and that will help you determine when to taper or not.

[grandmaD]

Okay, couldn't find a way to attach stuff so will try and cut and paste:  First will be DAILY UPDATE

 

I haven't done each day, but I think you get the idea, that you have this same list for each day and the last one is a totals one:

 

Totals

buzzy head*                backache                     sore chest        low                  fed up

burning feet *              legs ache*                    achey chest      lethargic         teary

cramps/spasms          knees ache                   indigestion        slow                big effort

head pressure             arm ache                     tight chest       tired                no desire

ringing ears*                head vibes                   palpitations      weak               lounge

vibrations                    dizzy                             hot flushes*     achey all over

sore head                    crook hips                    breathless        heavy             insomnia

walks                           headache                     anxiety            batcave            jolts

tingling: *                     itchy                             nerve flashes   constip/diarr     naseau

achey gall                    achey round back ribs RS       pain/achey low right side stomach

achey under breasts round stomach                achey down sternum               stomach burning

achey ribs                    belly discomfit            Rapid pulse

p/k’s                Good Days:                 Fair Days:                    Bad Days:      

[grandmaD]

Weekly update

 

(61mg-59mg)                                                                /       /2016   -     /        / 2016          

1 week            2 weeks           3 weeks           4 weeks           5 weeks          6 weeks            7weeks            8weeks

Achey

Buzzy head

Pressure head                                                                                                                                                                                     

Headaches

Head banging                                                                                                                                                                                     

Tired & slow                                                                                                                                                                                      

Cramps/spasms

Backache/hips                                                                                                                                                                                    

Palpitations

Rapid pulse                                                                                                                                                                                       

Breathless

T.chest

Insomnia 

Vibrations

Indigestion/nausea                                                                                                                                                                                         

Low

Weak

Nerve flashes

Hip 

Itchy

Batcave

Sore head

Head vibes

Gall ache/pain

Stomach ache/bad wind

Anxiety

Bad days

Good days    

 

I draw in the lines and columns but you could probably do this on computer.

[grandmaD]

Week by week comparison - I'll just do week 1 as an example but I have them for each week up to week 8.  Draw in lines/columns

 

WEEK  1

 

                                        Drop:         Drop:         Drop:           Drop:          Drop:          Drop:

                                       /date:          /date:          /date:           /date:           /date:           /date:          

 

Tension heads

Pressure heads

Headache

Palpitatns

Breathless

Tight chest

Head vibes

Body vibes

Dizzy

Sore head

Head banging

Batcave

Lethargic

Indigestion

Insomnia

Nausea

Prickles

Cramps

Spasms

Backache

Hip ache

Nerve flashes

Tired & slow

Weak

Heavy

Low

Weepy

Achey all over

Itchy

Tingling

Shakes

Anxiety

Rapid pulse

 

Painkillers

Strng:

Reg:

 

Good Days

Bad Days

[grandmaD]

Averages for each taper looks like this.  I have a separate page for each symptom, but on the same page have year 1, year 2, year 3 and so on all in different colours.  I have just done year 1 as an example.  Being an accountant type person, all this might be right up your ally!

 

First 12 months            2 years              3 years           4 years       5 years

 

Head Pressure per week

Pre stabilizing:  2

Stabilising:   2.4

8.6mg drop:  5.6                                                                      5% taper - capsules    

8.1mg drop:  6.4*worst for drop (updose to 8.6 mistake) 4 week capsules/4 weeks tabs

7.7mg drop:  3.5                                                                                  4 week taper   

7.3mg drop:  4.7                                                                                  10 week taper

7.0mg drop:  4.1                                                                                  6 week taper

Head pressure all day every day.  The days without it are days I had a headache.

At times I had head pressure plus headache and other times head pressure plus head vibes at the same time.  It is these head issues that get to me and get me down.

Av hp = 4.9pw                  overall drop for year: 1.6mg

[AliG]

Hi Grandma.  Wow !  That's a lot of information. Well done.

I notice that you have mentioned Serepax a few times in your thread,and yet there's no mention of it in your signature. I'm just wondering if you're still taking it ?  I'm assuming that you're not , as it could have some impact on your situation , if you are. Just a thought.

Ali

[grandmaD]

Grandma

 

I read what you wrote to AussieGirl and boy you are spot on. I am 3 years off and still struggling with WDs. You and AliG have convinced me to stay strong...cause sometimes I feel maybe I should go on something......I push that though away straight away but suffering makes you think that way....I am sorry for AussieGirl - everyone was against her trying to ride it out and I suppose she is suffering so much - that she just gave in.....

Hi there divalee, thank you for your post, you made my day if I can just be of help to one person!  As you probably also feel, it is easy to fall into feeling useless on this journey.

I am sorry you are still struggling after 3 years.  Did you do a slow taper?  I will try and have a look at your journal.  Oh yes, I know how strongly is that urge to have "something" and I allowed myself to do that just once a week - still do, but doesn't always help and in fact I am wondering if is rebound affect and is making things worse.  I am coming to the place where I think I'll just have to walk through it and allow my body to try and cope.  You just don't know what your body and brain are doing to make adjustments and I am beginning to think it is trying, but I muck it up by taking something else!

If happy little bluebirds fly

Beyond the rainbow

So can.......you.....and.....I

Somewhere over the rainbow!  yes! let us keep our thoughts on the glory, the colour and the good things - beautiful song!

tears are just flowing - as they do most days......xxx

Tears are healing - good on you, at least you can cry, that's good.  I still cannot cry, but I did get a tear a couple of times when I listened to John Farhnam singing "You'll never walk alone"

Blessings

[grandmaD]

Hi Grandma.  Wow !  That's a lot of information. Well done.

I notice that you have mentioned Serepax a few times in your thread,and yet there's no mention of it in your signature. I'm just wondering if you're still taking it ?  I'm assuming that you're not , as it could have some impact on your situation , if you are. Just a thought.

Ali

Thanks Ali, yes a lot of info and it was very painstaking gathering all the data to begin with, but I think now that it gave me something to do, because I couldn't do much else and there were many days due to head issues I couldn't even do that.  Anyway, it has paid dividends down the track for me to be able to guage where I am at with my symptoms.  Ladybug, if you are reading this, I forgot to mention that once you have a year of results you can then make  graph of each symptom which is easier still to see at a glance where things are going!

 

Thanks Ali for mentioning the Serapax.  I got it initially back in Feb. to help cope with extreme anxiety over my son who tried to commit suicide.  he asked for my help and I felt I HAD to go and visit him ( 5-6hour trip).  I only took it for 3 nights in a row and it worked wonders - SOOOOOO TEMPTING to take it every day, but the info said only now and then and the chemist said no more than 3 days a time.

 

After that, I took 1/4 once a week just to get a good nights sleep.  That was okay the first 2 or 3 times and after that I noticed anxiety and palpitations ramped up even worse, and that's when I read about rebound effect.  I probably tried again another 2 or 3 times, but then looked up side effects and decided to go back to the doxylaminie succinate but then started having similar issues with it so then back to the night meyrcyndol and it also wasn't working like it used to either!  The mercyndol is what I've been on since start of tapering for migraines and headaches, but it also helps you sleep.

 

So, in all, you may be onto something.  I did take night mercyndol again 2 nights ago (no headache - just to help me sleep) and I woke up with a THUMPING GREAT HEADACHE!   I think it was trying to tell me something!  HOWEVER, strangely enough, the breathlesssness is a lot better!  It is all just so confusing!  So I am thinking I have come to the point to try and get through and not take anything!

[grandmaD]

Breathlessness

I have been trying to determine whether this is w/d or related to gall surgery or my crook guts or whatever!  I don’t know if it is physical or anxiety.  I guess I have been hoping all this time it would improve with time after gall surgery.

 

I have gone back over my notes and it appears that taking codeine or serapax does not make it better or worse.  I did find something very interesting though when I went back and discovered that almost every time I took Naprogesic, I got arrhythmia.  I also had anxiety and palpitations, but have them a lot, so hard to blame it for those.

 

I went back over my results and have had breathlessness since I began to taper, so perhaps it isn’t gall related at all.   Inititally it was manageable, the worst being after my first 10% taper crash at 4 months in 2010 when it went sky high. 

 

It came back down to manageable levels until 4.9mg taper in Dec/Jan 2014. 

 

Then it came back down to mangeable levels until 4.6mg taper in Jun/Jul 2014 which is when I went downhill with many symptoms and had to hold. 

 

After a 6 month hold it went back to manageable levels but after 3 tapers rose again and at the 4.1mg taper in Jun/Jul 2015 which led to anothr 6 month hold. 

 

It dropped back down to better than manageable this time for only 1 taper and has gone sky high again (daily) for the last 4 tapers. 

 

At present I am trying to manage my diet a bit better, have read up about stomach issues and so on and will see if that has any affect on it.

 

The weird thing is that I still get the same aching around my middle, pain in lower right side of abdomen, aching where the gall was and a pain that radiates around to my back on the right side  (all these symptpoms I was reassured by the Specialist would GO AWAY after I had the gall bladder out!). 

 

I have just done a drop and the breathlessness has improved which is also weird.  I went back to see how I went with breathlessness after the previous holds and it was also confusing with it getting worse at the first hold in 2014  but better with the second hold in 2015!

[divalee]

Brilliant information Gran -  thank you.   Yes well it took me a year and a half to taper but Sertraline comes only in capsule form of 25, 50 and 100 mgs.  I dropped 25mgs each time and stayed on that for four months then dropped another 25 and so on...

 

I fear I will feel this way forever and it is so scary....

 

Thank you so much for all your efforts

 

Love

Lee

[brassmonkey]

Hi GrandmaD--  I just posted some thoughts in ladybugs thread but had some others just now.  Have you had a chest x-ray to rule out lung damage etc?  Shortness of breath is also a classic anxiety symptom, part of the fight or flight response.  Although breathing is an automatic response some people just stop for a few moments while doing other things, then have to huff and puff for a second to catch up.  I have a bad habit of doing this when I concentrate on a project. I've also had chronic bronchitis since I was a kid.  Taking Guaifenesin every day has really helped with that, along with learning to "belly breath".

[grandmaD]

Brilliant information Gran -  thank you.   Yes well it took me a year and a half to taper but Sertraline comes only in capsule form of 25, 50 and 100 mgs.  I dropped 25mgs each time and stayed on that for four months then dropped another 25 and so on...

 

I fear I will feel this way forever and it is so scary....

 

Thank you so much for all your efforts

 

Love

Lee

Thanks Lee for your kind words!  I'm so sorry you have also been caught up in this and due to no fault of your own, had to drop very quickly. 

 

Yes, it is scarey and I probably felt that I would never get off this horrible path and that I would stay like that forever.  It has only been since this year, maybe the last 3 months, really, that at last I think I might be able to get off!  I am having better days and more good days than bad and so I am feeling more optimistic.  Not only that, something in my head has changed for the better.  Along with being able to think more clearly, focus and concentrate better, I think the part of my brain wherever optimism comes form is healing also!

 

You will get there yet - it's only early days, but has taken me almost 5 years to get to this point, but I was on for longer, played around for 10 years upping and down-dosing in my own attempts to get off which causes havoc with the brain and I am in my 60's.  You weren't on for that long and I do know Paxil is the hardest one to get off so yours might be heaps easier and if you are young, that will help you get off quickly.

 

Just don't give up or give in!  Blessings

[grandmaD]

Hi GrandmaD--  I just posted some thoughts in ladybugs thread but had some others just now.  Have you had a chest x-ray to rule out lung damage etc?  Shortness of breath is also a classic anxiety symptom, part of the fight or flight response.  Although breathing is an automatic response some people just stop for a few moments while doing other things, then have to huff and puff for a second to catch up.  I have a bad habit of doing this when I concentrate on a project. I've also had chronic bronchitis since I was a kid.  Taking Guaifenesin every day has really helped with that, along with learning to "belly breath".

Thanks Tom for your post and suggestions.  yes, I had an x-ray about a year ago which was clear.  I haven't ruled out anxiety as yet either, as my pulse is always in the high 90's and 100's so that is something I am going to post about in symptoms shortly to see what I can do about that.  What do you mean by "belly breathing?"

[grandmaD]

I am on the warpath with my symptoms at present!  I spent 2 days reading up about stomach issues, feel like a dog chasing my tail becausse it could be SO MANY DIFFERENT THINGS! 

 

Stomach/guts issues

I have gone back on a very strict IBS diet to see if that helps.  I read that chamomile, lemon balm and licorice tea are calming.  I have tried lemon balm and I do think it helps with the palpitations, but I think it didn’t agree with my stomach.  I read licorice is an anti-inflammatory and to have that with it but a couple of times I felt the anxiety got worse and the last time I had licorice tea before bed and I was stressed out no end, restless and after nearly 3 hours still high.  Next day I looked it up and found out licorice is a mild stimulant on the andrenals!  

 

Anyway,I will start with having chamomiole tea and take an IBS capsule (basically peppermint oil) before meals.  Apparently peppermint can give you heartburn.  What does that feel like?  Last night I had pain in my chest (L) so I knew not heart - and ribcage was very achey.  I don't know if this from the peppermint or not, but I will keep taking it for a week and monitor the chest symptoms, as I have had pain and aches in that area before.

 

I bought some digestive enzymes today, but will wait until the week is up with the peppermint first and see how that works out.

 

After that, I will have to address whether it is anxiety and see what I can do to help myself more in that area.

[grandmaD]

Palpitations

Again, there are a multitude of things that contribute to these guys, but one I found was quite intereresting was iodised salt.  I LOVE my salt, but I will cut it out or down, and just see what happens there over the week.  It assume the iodine is man made, so it could be like many other things our sensitised body cannot handle.

 

These too, could also be from anxiety.  I often feel that high vibrating, electrical surge sort of feeling that my brain tells me is my body reacting to not having the drug.  So it could just be withdrawal.

 

It has been good to have a near normal head after nearly 5 days so I can read and do research, but I am not sure it all helps, in fact, I think it can add to the anxiety, so I have to watch that.  I think I will give it a rest now and get my jig saw puzzle out.  Any comments, however would be much appreciated.

[Jlynn]

Is the breathlessness like you can't catch your breath or more like you have to remind yourself to breathe? I am just curious if it is more systemic or anxiety related. 

 

I have not had palpitations but it could be numerous things. I have seen it listed as a common withdrawal symptom in a couple of different places. 

 

My stomach has been on the fritz for about 3 months now, ever since the dizziness started really and nothing I do seems to reset it. I had someone recommend the licorice root but I have not tried it yet so I will have to let you know on that. 

[ladybug]

That is an amazingly detailed and thorough system you have, Gran! I love the idea of listing symptoms that are common to you and then checking which ones you have each day. I think I will start by doing that.

 

Edited to Add: Gran, when was the last time you had your thyroid tested? The fact that you had a reaction to Iodine made me think of thyroid since Iodine is important for a healthy thyroid. Btw, you can get non-iodized salt at the grocery store. Anyway, heart palpitations, increased anxiety and loose bowels (not sure if this is the stomach issue you are talking about) are all symptoms of an overactive thyroid. Lord knows long term use of these meds and WD can throw off thyroid function big time.

 

Here are the symptoms of hyperthyroidism:

• Sudden weight loss, even when your appetite and the amount and type of food you eat remain the same or even increase
• Rapid heartbeat (tachycardia) — commonly more than 100 beats a minute — irregular heartbeat (arrhythmia) or pounding of your heart (palpitations)
• Increased appetite
• Nervousness, anxiety and irritability
• Tremor — usually a fine trembling in your hands and fingers
• Sweating
• Changes in menstrual patterns
• Increased sensitivity to heat
• Changes in bowel patterns, especially more frequent bowel movements
• An enlarged thyroid gland (goiter), which may appear as a swelling at the base of your neck
• Fatigue, muscle weakness
• Difficulty sleeping
• Skin thinning
• Fine, brittle hair

Of course so many of these symptoms can be attributable to WD too, but if you haven't gotten your thyroid checked this year it might be worth looking into. If you do, make sure to get a full thyroid panel that tests TSH, Free T3 and Free T4, as well as TPO, TGab and TSI antibodies.

[AussieGirl]

Grandma D. I have found reading the details of your journey so helpful & informative & can relate to much of what you shared .

 

THANKYOU for posting it all.

 

How are you feeling currently & what dose are you on ?

[grandmaD]

Hi Aussie girl, here is my latest update:   HOW ARE YOU GOING SINCE YOUR SWITCH? 

 

Week 1 at 3.6mg Aropax

 

The Good

A few symptoms the same with many slight improvements and many slightly worse.  3 good days and no bad days.

 

The bad

Big jump in the number of sore heads, but they are only mild or fleeting, sos not really all that bad.  Rapid pulse is still in the 90’s and 100’s each day, but I am coping.  Insomnia for 3 nights from 1 to 2.5hrs.

 

The ugly

Still trying to find answers to my guts aches/pains.  Just wish I knew if it was physical or pyscological.

 

Overall

A slightly better week than week 8, which is usually the case.  It is weird how the first week of a drop is quite good and often better than week 8.  I have often been tempted to reduce again the next week, but because I have observed that I get worse in week 2 and moreso in week 3 and begin to improve again from about weeks 6 and 7, I have to realise that the drop just doesn’t hit me until weeks 2-4 when it is at its worst.

 

Compared to previous week 1, insomnia is about the same, palpitations had improved, which is reassuring but worse for rapid pulse.

[grandmaD]

Is the breathlessness like you can't catch your breath or more like you have to remind yourself to breathe? I am just curious if it is more systemic or anxiety related. 

I only just posted the answer to this on Ladybugs journal if you can look there, otherwise, let me know and I'll try and copy it and paste it here!

I have not had palpitations but it could be numerous things. I have seen it listed as a common withdrawal symptom in a couple of different places. 

Ok, I am hearing that it is a common  w/d symptom a fair bit now, so I think I will just have to accept it! 

My stomach has been on the fritz for about 3 months now, ever since the dizziness started really and nothing I do seems to reset it. I had someone recommend the licorice root but I have not tried it yet so I will have to let you know on that.

Yes, I read licorice is good for the stomach.  My herb book says it is a tonic, expectorant, laxative, and used mostly for disorders of the chest and lungs, coughs and colds.  There is a precaution if you have high blood pressure not to use it too often or too long.  

What issues do you have with your stomach?  What have you tried or found helpful (if anything! lol)

[grandmaD]

Hi Jlynn I just took a look at your signature - yet another one been on for 20 years, same story as mine, tried yourself to get off, failed, crashed, re-instate, etc until discovered slow taper!  I guess we can be glad we at last found a way to taper.  I will try and read your journal (what is it called?).  I have been readying a few others lately and find it so depressing and then I can't remember who is who!

 

Are you doing a 10% taper now as suggested?  It looks like you are dropping every month, is that right, because you say you get worse after 40 days into the taper which is like almost 6 weeks.  I find it difficult to understand the way they write the dates here, it is backwards to us here.

 

How do you cope with your symptoms? I see you also have the internal shaking which could be what I call body vibrations and don't see a lot of people with that.  How do you deal with that?  Do you find they get really strong, hard and high at times or all the time?

[grandmaD]

That is an amazingly detailed and thorough system you have, Gran! I love the idea of listing symptoms that are common to you and then checking which ones you have each day. I think I will start by doing that.

It didn't start that way.  Originally I just listed daily symptoms but the system grew through necessity, I guess.  Yes, you just need to edit my list to suit your symptoms.

Edited to Add: Gran, when was the last time you had your thyroid tested?

I'll have to go look that one up.  Perhaps a year ago and it was okay back then.

The fact that you had a reaction to Iodine made me think of thyroid since Iodine is important for a healthy thyroid. Btw, you can get non-iodized salt at the grocery store.

Not sure yet if the salt causes the palpitations because I'm not good at going CT and found I just had to have it on my eggs and meat!  I don't want non-iodised salt because the whole reason for having iodised salt is FOR MY THYROID to get the iodine because I live in the country.  I just have to find out if it is man-made.  The other option may be to get sea salt and crush it finely myself.

Anyway, heart palpitations, increased anxiety and loose bowels (not sure if this is the stomach issue you are talking about) are all symptoms of an overactive thyroid. Lord knows long term use of these meds and WD can throw off thyroid function big time.

My big problem is constipation and has been all along.  Loose bowels I could count on 1 hand in the last 5-10 years.

Here are the symptoms of hyperthyroidism:

• Sudden weight loss, even when your appetite and the amount and type of food you eat remain the same or even increase I can't say my weight loss has been sudden.  25kg over the last 3 years and the doctor wasn't concerned.
• Rapid heartbeat (tachycardia) — commonly more than 100 beats a minute — irregular heartbeat (arrhythmia) or pounding of your heart (palpitations) Yes
• Increased appetite  definitely not
• Nervousness, anxiety and irritability Yes
• Tremor — usually a fine trembling in your hands and fingers No
• Sweating No
• Changes in menstrual patterns n/a
• Increased sensitivity to heat Yes
• Changes in bowel patterns, especially more frequent bowel movements No
• An enlarged thyroid gland (goiter), which may appear as a swelling at the base of your neck No
• Fatigue, muscle weakness Yes
• Difficulty sleeping Yes
• Skin thinning Probably due to age
• Fine, brittle hair Yes

Of course so many of these symptoms can be attributable to WD too, but if you haven't gotten your thyroid checked this year it might be worth looking into. If you do, make sure to get a full thyroid panel that tests TSH, Free T3 and Free T4, as well as TPO, TGab and TSI antibodies.

Seeing as I don't have all the symptoms, it may not be that.  Oh, yes, it is VERY SURPRISING, in fact DOWNRIGHT BIZAARRE how w/d can mimic SO MANY symtoms of other diseases, this is where it gets downright complicated and confusing and frustrating!!!

 

Anyway, i do recall you did have thyroid problems.  Did it turn out to be thyroid or was it w/d?  What did you do for it?

[ladybug]

Ah, ok. Most likely not an overactive thyroid then. I also have problems with constipation, no doubt another side effect of the pills.

 

Yes, I am having issues with my thyroid. My TSH level would go from abnormal to normal and back again. They even prescribed me medication for it at one point, until I demanded to be retested with a FULL panel and when that came back the TSH had gone back down so they were like "Oh, I guess you don't need meds then." Is that what they pay you the big bucks for, doc?

 

Because I had done my own research I made them give me a full panel and when I did my T4 was always in the optimal range which means I have subclinical hypothyroidism which is usual left to the patient or doctor's discretion as whether to medicate it. Which is fine by me because I am terrified to take any additional medications while withdrawing. I usually get it tested when I'm having worse than usual hair loss and fatigue since those are classic symptoms of an underactive thyroid. Thankfully, my hair has stopped falling out for the meantime and the fatigue isn't worse than WDnormal so I haven't felt the need to get it tested lately to see what it's up to. Probably the same.

[grandmaD]

Oh Ladybug, you went through all that for nothing!  This just shows we have to take charge of our own health.

 

My results - Aug 2015: Thyroid result: TSH 1.3 (normal range .5-4.0)

 

You sound confident about tapering, so go turtle go!  Under 5mg now, nearly home!!!!  You CAN DO IT!

 

About the chamomile, I think I've misunderstood the meaning of stimulant.  It seems to mean it stimulates the part of the body it is supposed to be good for.  In other words, it is good for gastro-intenstinal issues, meaning it stimulates that area.  I did google that licorice does stimulant the adrenals mildly.  I only had the chamomile once, but I had the licorice and peppermint tea with it, at the same time, not a good experiment!  I will try it again by itself!

 

This is a link about foods good for the adrenals.  I heard chocolate was a stimulant, but this link reckons dark chocolate is calming!
 I finally worked out the best way to find out was to google adrenals with the food/herb to see the affect on them, because I think that may be what affects anxiety.

 

http://clearyourstress.com/deal-with-stress/11-best-foods-to-lower-stress/

[ladybug]

Thank, Gran!

 

Your TSH is right between 1-2 which is optimal.

 

So if you're problem is constipation then it seems the gastro-intestinal stimulation would be a good thing? I've used peppermint before for nausea and it worked well.

 

I thought dark chocolate was a stimulant! LOL. I know chocolate contains theobromine which is a caffeine-like stimulant and dark chocolate has higher concentrations of theobromine vs. milk chocolate. Hmm.

[Jlynn]

Hi Jlynn I just took a look at your signature - yet another one been on for 20 years, same story as mine, tried yourself to get off, failed, crashed, re-instate, etc until discovered slow taper!  I guess we can be glad we at last found a way to taper.  I will try and read your journal (what is it called?).  I have been readying a few others lately and find it so depressing and then I can't remember who is who!

 

Are you doing a 10% taper now as suggested?  It looks like you are dropping every month, is that right, because you say you get worse after 40 days into the taper which is like almost 6 weeks.  I find it difficult to understand the way they write the dates here, it is backwards to us here.

 

How do you cope with your symptoms? I see you also have the internal shaking which could be what I call body vibrations and don't see a lot of people with that.  How do you deal with that?  Do you find they get really strong, hard and high at times or all the time?

Hi Gran

 

Hope you are feeling good today! My taper has been up and down really. I was doing every 30 days but that got to be to fast so I slowed down to 45 days. That also caught up with me so I have been holding more. Finding am going to have to slow down even more as well as probably make smaller drops going forward.

 

As far as coping I have to say I don't really know how I get through some days. I pray a lot, walk a lot, take my supplements, and try and distract myself from ruminating about withdrawal. It is hard but I try and focus on one day at a time. The internal shaking has resolved thank God!

[Jlynn]

Oh and my dates are month/day/year format if that helps.

[grandmaD]

 

Hi Jlynn I just took a look at your signature - yet another one been on for 20 years, same story as mine, tried yourself to get off, failed, crashed, re-instate, etc until discovered slow taper!  I guess we can be glad we at last found a way to taper.  I will try and read your journal (what is it called?).  I have been readying a few others lately and find it so depressing and then I can't remember who is who!

 

Are you doing a 10% taper now as suggested?  It looks like you are dropping every month, is that right, because you say you get worse after 40 days into the taper which is like almost 6 weeks.  I find it difficult to understand the way they write the dates here, it is backwards to us here.

 

How do you cope with your symptoms? I see you also have the internal shaking which could be what I call body vibrations and don't see a lot of people with that.  How do you deal with that?  Do you find they get really strong, hard and high at times or all the time?

 The internal shaking has resolved thank God!

 

THis is SO GOOD to hear!  I still have the inner vibrations, but not high like they used to be, more mild to moderate, but I have also noticed with each drop there is a period where they are very strong and hard. 

[grandmaD]

Posted this elsewhere and just wanted to put it in my journal:

 

Petunia and btdt I find this anxiety/depression swing very interesting because I think this is what I am now experiencing.  Like you, I was getting these days that I felt very low, despondent, heavy and weak in body and dull and heavy in head and on those days I felt suicidal.  It was having those thoughts that really brought me to my senses, because the previous day I was okay, so I got sus about it and disregarded them.

 

The other thing I thought it could be was the days I used to regularly get a 3 day migraine every week, but now I was just having this low, heavy feeling and ;not the pain of the migraine.  I actually now do welcome these days, even though I feel like a dead person walking, I also feel more calm.

 

I am beginning to notice now that after that comes the high anxiety and stress and insomnia and so on, which I find so hard to live with! 

 

I am now beginning to hope my body is trying to get stable, swinging between the two and hopefully, eventually it will even out!!  I hope this goes for you guys as well.

[O2bhappy]

grandMaD-

 

I have also been experiencing the internal shaking.  When it first started it was actually tremors and internal shaking.  The tremors, which were in my hands have resolved.  The internal shaking is pretty much constant.  I noticed it is worse in times of stress or when I am hot.  It doesn't seem like anyone has answers as to how to lessen the shaking.  I pray that this is one of those things that goes away over time.

[grandmaD]

It does help to find someone else experience this same thing!  At the beginning, I put it down to the back problems I had with 3 or 4 slipped discs, ruptured and so on and another diagnosis was sciatica which explained it for my legs, but not inside my body.  So  even up till now, I still don't know if it is my spine or from w/d as I haven't seen too many people with this problem.

 

It has improved from the first 3 years when it felt like a jack hammer inside me.  Now days it seems to fluctuate from mild to moderate to high.  I pray too, that one day it will go away and I often now wonder how it would feel to not have this internal vibration going on and to actually feel calm and peaceful inside!  I'm sure it would be soooooo nice!  Let me know if it goes away for you!

[O2bhappy]

grandmaD -

 

My gp thought my internal shaking was caused by my thyroid.  I have hypothyroidism and coming off Prozac actually made me have hyperthyroidism.  My gp has lowered my thyroid medicine twice.  It has not improved the internal shaking at all.  I have moments when I don't shake and it has been wonderful.  I have had an MRI and CT Scan and both came back normal.  I have seen on other post that internal shaking could be a withdrawal symptom.  I have actually seen it as a symptom of menopause.   

[grandmaD]

A quick update as I am in now in week 5.  Out of the blue I got a severe stiff neck and couldn't move my head.  I had not done anything, got up that morning and it was okay but an hour later - bingo! 

 

I have had similar muscle spasms in my back in the past.  That is when I would go into panic mode thinking my "original condition" was back, because that is why I went on aropax/paxil in the first place.  It has been absolutely amazing when I would get them and they would go just as suddenly in a day.  It was then I realised it was w/d.  I am wondering if this is a similar thing.

 

I took painkillers and anti-inflammatorys for a couple of days, along with a hot pack and dencorub.  The severity is gone and I have better head movement, but not completely better yet after 5 days.

 

Added to that, the following day I woke up with severe muscle aching everywhere, mainly my right leg, hip, and butt and my knee so that I couldn't walk!  This was an added shock as it has been ages since I experienced the back spasms, but I do get cramping regularly in my right leg, which I am still not sure is w/d or from my spine.  I guess only time will tell.

 

I was just wondering what you other guys have experienced in the way of spasms in various places that come out of the blue?