Ladybug's Pax-hell Journey

[ladybug]

 

hi there ladybud

 

( on a side note,,, with regards tsh, my doctor told that the medical books state tsh should be between 0.5 and 5.0, however in her opinion for our thyroid to be working efficiently and our body to feel better she said it should be between 1.0 and 2.0) also my t3 and t4 were out of range..

 

you said your tsh was 4.9 which going by what she states is high even though medical books say that to be normal.. therefore It would suggest hypothyroidism.. however because it increased so much from 0.9 to 4.9 in three months it could also be hashimotos..((just my own opinion))

Mine went from 6.6 to 10 in four months 

 

Did you ever get your t3 and t4 checked or your antibodies test??

K x

Still reading thru your journal ... just for interest sake I checked up my thyroid results for 1995 and it was 1.1 and here in Australia they say normal is between .35 and 5.0.

In 2013 my result was 1.7 and now they say normal is .5-4.5.

How can you know what true "normal is when they change it?"!  I notice they have also changed the "normal" for glucose levels also!

Then in 2015 it was 1.3 with the "new normal" being .5-4.0!

 

Yeah, endocrinologists have been debating about what the upper limit of TSH should be so they keep lowering it. Ideally you want to be between 1-2 so you're perfect!

[ladybug]

 

Forgot to put that my TPO antibodies came out at 8. Under 25 is considered "normal." I finally got an appt. with an actual endocrinologist, but it's not until March!

 

Anyway, my question is: How do you know when to begin tapering again after a long hold? I have been at this dose range for six months now, and I'm still not as stable as I was in May, although I have improved. My sleep has improved the most as it was really bad for a while. The depression has improved greatly as well. Mostly my symptoms are a lot of mental anxiety and DR. If I dropped again it would only be the same amount I was dropping before, .1mg. I'm scared of making things worse, but on the other hand part of me wonders if a small drop might improve my lingering symptoms. This has been the case for me in the past, but who knows now. Patterns in WD seem to change without warning.

How long do you hold for and how do you know when to taper after a long hold, like 6 months?  A VERY GOOD QUESTION!

I note that this post was in 2013 and you were down to 6.3mg but the question is still a relevant one

Because:

you are now lower in dose and it is my opinion that for some of us, the lower we go, the worse it gets.

So:

I say keep holding until you DO see some improvement.

I will just add that, when I was at that dose, in that year I went from 6.6 to 5.6mg and overall it worse a worse year than the previous one.

The following year, overall was worse still.

The following year over all was even worse, so in other words, each year got worse and worse the lower I went.

So:

Again, I would say, hold longer.

 PS Like you, I have done .001 (by weight) drops up and down and it didn't seem to make any difference.

 

 

Well when I finally started coming out of that recent wave I decided to resume my taper. I only went from 5.15 to 5.1mg though. After a long hold I always like to "test the waters" with a small drop. So far, so good. I only dropped 1mg in that past two years so I don't know if I'm in danger of going too fast. But I do know it's surprising to still have a lot of issues while going so slow. That's why I've always related to you cause you are the same way, especially with your headaches. Another reason why I'm so glad to hear they have improved for you. That's huge!

[grandmaD]

. I was very disappointed to see in my signature that I only managed to decrease by ONE mg in TWO years. I've decided to try and speed things up a bit, and try .1mg drops every 6 weeks instead of 8. So I took a drop today.

 

I will be starting my last semester of school in a little over a week so that is exciting. Unfortunately, that also means I have to start paying back my student loans so I will have to return to work. I haven't worked in 4 years. My last job was part time and my WD got a lot harder so towards the end I was spending most of my work day in the toilet panicking and having diarrhea. It was awful. My stomach was so bad I had been carrying around a bottle of Pepto-Bismol in my purse for several months. For me stomach issues cause anxiety and vice versa. So I had to give my notice. It ended up being for the best as a month or so later is when I hit one of the roughest patches in my WD, where I had severe insomnia (2-3 hours sleep in 9 days) and then over a year of severe hypnic jerks that made my life hell. So of course I'm terrified of that happening again, especially since I am heading into a dose range most people seem to have difficulty with. I have no choice though.

 

Other than that, things are going ok right now. When I am in window I am forcing myself to go out more and socialize. I even joined an online dating site.   Is there a dating in WD thread here? Because I need it. LOL.

I am keen to follow you in this one - dropping 1mg (by weight, I assume) every 6 weeks.  Because of the LONG time this is taking, it is one of the options I have also considered,but not yet taken.  I haven't wanted to change things while I've had other procedures going on in my life like gall surgery, gastrophies and colonoscopies and cat scans and blood tests!

 

You must be doing somewhat better, going back to school, since last time I talked with you, you had to quit.  Wow, you jointed an on-line dating service!  I'm excited to see how this goes for you.  This must have been a HUGE step for you, considering your past shyness and trouble with social events, etc.  You are very brave, baby girl! x

 

I am keen to see how you go with the stomach issues as I also have had this problem since Dec. 2013 and that is what resulted in gall surgery, but I still have them.

[grandmaD]

 

 

Forgot to put that my TPO antibodies came out at 8. Under 25 is considered "normal." I finally got an appt. with an actual endocrinologist, but it's not until March!

 

Anyway, my question is: How do you know when to begin tapering again after a long hold? I have been at this dose range for six months now, and I'm still not as stable as I was in May, although I have improved. My sleep has improved the most as it was really bad for a while. The depression has improved greatly as well. Mostly my symptoms are a lot of mental anxiety and DR. If I dropped again it would only be the same amount I was dropping before, .1mg. I'm scared of making things worse, but on the other hand part of me wonders if a small drop might improve my lingering symptoms. This has been the case for me in the past, but who knows now. Patterns in WD seem to change without warning.

How long do you hold for and how do you know when to taper after a long hold, like 6 months?  A VERY GOOD QUESTION!

I note that this post was in 2013 and you were down to 6.3mg but the question is still a relevant one

Because:

you are now lower in dose and it is my opinion that for some of us, the lower we go, the worse it gets.

So:

I say keep holding until you DO see some improvement.

I will just add that, when I was at that dose, in that year I went from 6.6 to 5.6mg and overall it worse a worse year than the previous one.

The following year, overall was worse still.

The following year over all was even worse, so in other words, each year got worse and worse the lower I went.

So:

Again, I would say, hold longer.

 PS Like you, I have done .001 (by weight) drops up and down and it didn't seem to make any difference.

 

 

Well when I finally started coming out of that recent wave I decided to resume my taper. I only went from 5.15 to 5.1mg though. After a long hold I always like to "test the waters" with a small drop. So far, so good. I only dropped 1mg in that past two years so I don't know if I'm in danger of going too fast. But I do know it's surprising to still have a lot of issues while going so slow. That's why I've always related to you cause you are the same way, especially with your headaches. Another reason why I'm so glad to hear they have improved for you. That's huge!

 

I agree it is a good idea to "test the waters" with a tiny, drop and I reckon you were wise to do so.

That's what I did both times I did the 6 month taper.  Here's exactly how I did it:

You mentioned in your journal how you can weight a tablet one minute and it is 110 and next time it is 112mg.  My experience also, so:

My tablets for that drop, of say 111mg all weight between 110 and 112mg.

I do 3 weeks worth in one go and put the 110's (7) in my weeky container, then the 111's and then the 112's.

In any given day I could be taking any of the 3 weights, but over the 3 weeks, I reckon it spans out okay.

After those 6 month drops, but now, after ANY DROP, this is what I do:

I do 2 weeks of tablets and on any given day they will weight 110 or 111mg for week 1

For week two, they all weight 110mg.

The following week, I drop again, with the 3 different weight variations.  This seems to "slide" me easier into the next drop (a variation of Brassmonkey's slide)

and seems to be working well so far for most things, not everything though. 

I started doing this after the last 6 month drop and have only done 2 drops since the hold. 

[ladybug]

 

. I was very disappointed to see in my signature that I only managed to decrease by ONE mg in TWO years. I've decided to try and speed things up a bit, and try .1mg drops every 6 weeks instead of 8. So I took a drop today.

 

I will be starting my last semester of school in a little over a week so that is exciting. Unfortunately, that also means I have to start paying back my student loans so I will have to return to work. I haven't worked in 4 years. My last job was part time and my WD got a lot harder so towards the end I was spending most of my work day in the toilet panicking and having diarrhea. It was awful. My stomach was so bad I had been carrying around a bottle of Pepto-Bismol in my purse for several months. For me stomach issues cause anxiety and vice versa. So I had to give my notice. It ended up being for the best as a month or so later is when I hit one of the roughest patches in my WD, where I had severe insomnia (2-3 hours sleep in 9 days) and then over a year of severe hypnic jerks that made my life hell. So of course I'm terrified of that happening again, especially since I am heading into a dose range most people seem to have difficulty with. I have no choice though.

 

Other than that, things are going ok right now. When I am in window I am forcing myself to go out more and socialize. I even joined an online dating site.   Is there a dating in WD thread here? Because I need it. LOL.

I am keen to follow you in this one - dropping 1mg (by weight, I assume) every 6 weeks.  Because of the LONG time this is taking, it is one of the options I have also considered,but not yet taken.  I haven't wanted to change things while I've had other procedures going on in my life like gall surgery, gastrophies and colonoscopies and cat scans and blood tests!

 

You must be doing somewhat better, going back to school, since last time I talked with you, you had to quit.  Wow, you jointed an on-line dating service!  I'm excited to see how this goes for you.  This must have been a HUGE step for you, considering your past shyness and trouble with social events, etc.  You are very brave, baby girl! x

 

I am keen to see how you go with the stomach issues as I also have had this problem since Dec. 2013 and that is what resulted in gall surgery, but I still have them.

 

I drop .1 mg active ingredient which is 2mg pill weight usually.

 

I actually graduated from school (finally!) and I was blessed to find a job that allows me to work from home most of the time. I hadn't worked in 5 years so it was a huge step but it was truly an answer to my prayers since I am still able to work when I'm not feeling well. And now I can pay back my student loans! Finally being able to make my own money again has been huge for my self esteem. I'm so grateful and hope I can keep this job for as long as possible because I really enjoy it.

 

The nausea seems to be better lately. It was pretty bad on and off throughout 2015. Crystallized ginger has been a huge help and I always have a bag on hand. I notice a lot more sensory issues, like vertigo, etc. but I know it could be a lot worse so I'm fine with it. Symptoms seem to come and go throughout dose ranges so hopefully those will go too one day.

[LexAnger]

Great discussion ladies!

I'm on the same boat, been holding for 4 months with better energy and less needling pain, but my brain is totally dead ver,y scary. I could not write a simple email or make a simple conversation when it's bad most of the time today until like 10:30 pm. Feel kin like a brain coma.

 

It's almost a daily debate weather or not to make another cut in hopes that my brain may wake up, even I decided to hold forever since the last hit 4 months ago, but now it seems even worse with brain dead as I can do nothing for my work.

 

Too scared to make any changes though, so still holding.

 

I found my self with lower expectation and high acceptance and endurance after each worsened hit. Amazing how much human being can endure and adjust.

 

Wish you both feeling better.

Lex

[grandmaD]

I drop .1 mg active ingredient which is 2mg pill weight usually.

 

 

Yep, that is exactly what I worked out.

I actually graduated from school (finally!) and I was blessed to find a job that allows me to work from home most of the time. I hadn't worked in 5 years so it was a huge step but it was truly an answer to my prayers since I am still able to work when I'm not feeling well. And now I can pay back my student loans! Finally being able to make my own money again has been huge for my self esteem. I'm so grateful and hope I can keep this job for as long as possible because I really enjoy it.

Congratulations!  How amazing you have achieved this and come this far, you have done very well and I am proud of you baby girl!  I am sure being able to work will add another dimension to your life, give you something else to concentrate on and like you said , give you that much needed self-esteem.  I hope it continues to be truly satisfying and fulfilling and becomes easier as you keep tapering.

The nausea seems to be better lately. It was pretty bad on and off throughout 2015. Crystallized ginger has been a huge help and I always have a bag on hand. I notice a lot more sensory issues, like vertigo, etc. but I know it could be a lot worse so I'm fine with it. Symptoms seem to come and go throughout dose ranges so hopefully those will go too one day.

i gather nausea was your stomach issue then?  It is definitely a w/d symptom - I had it for 7months straight in 2012 and then in 2013 I think for several months.  I'm glad it has eased off for you.  It was strange how I had it for so long and then it just suddenly went away!  It sure makes you appreciate being able to eat and to enjoy it - I never stop being grateful for that!!!

 

[PoetJester]

Ladybug,

 

I read your  intro last month and  sent you a message a few weeks ago that remains in your message box unread.  It's the little envelope icon in the upper right of this webpage.  The letter is just regarding your post on fatigue as a constant companion to both psych pill use and withdrawal.  Since I wrote you the letter I have been looking in to Yeast Candida Infection as a possible source of my fatigue.    I had a particularly nasty yeast  infection for quite a few years that really taxed my liver and probably has something to do with my post wd fatigue.  Anyways, check your inbox some time.    PoetJester

[grandmaD]

Great discussion ladies!

I'm on the same boat, been holding for 4 months with better energy and less needling pain, but my brain is totally dead ver,y scary. I could not write a simple email or make a simple conversation when it's bad most of the time today until like 10:30 pm. Feel kin like a brain coma.

 

It's almost a daily debate weather or not to make another cut in hopes that my brain may wake up, even I decided to hold forever since the last hit 4 months ago, but now it seems even worse with brain dead as I can do nothing for my work.

 

Too scared to make any changes though, so still holding.

 

I found my self with lower expectation and high acceptance and endurance after each worsened hit. Amazing how much human being can endure and adjust.

 

Wish you both feeling better.

Lex

Just a quick scan of your signature seems you were coming down too fast.  Seems to me you pay for it down the track, like I see you had to up-dose. 

I am so sorry to hear what you are going through and it makes you mad to see so many others suffering in this way.  When you feel like this is can be overwhelming, but as you can see, Ladybug and myself have plodded through the thick of it, and still going.  You have been on a/d's a lot less than we have, so there is a good chance your healing will be quicker also.

 

You are still in a bad state of w/d if you are feeling brain dead and I felt like that for a long time, exactly how you describe.  I could only hold a conversation for 5 minutes.  Go as slow as you can is all I can say and be kind to yourself/body and brain which is trying to heal itself at the same time.  Be patient, I know that is easier said than done, but this process takes determination and endurance on our part.  Don't give up!

 

Like you, when I did a hold, I got more energy.  Sometimes some symptoms got worse and then improved!  I will be putting up more of my results in the hope it will help others like yourself, on my journal after I finish my history.

 

I know the fear that comes with it all.  If your brain is dead, and it was me, I would give it longer, but see what others have to say and what Ladybug thinks.  It always took me 6 months but even then, not all symptoms had improved.  You have to take some risks sometimes and for Ladybug and I when we tapered after holding, we always did it in a tiny, tiny dose, not the regular taper.  Keep a journal so that next time you have to hold, you will know what worked or didn't work.

 

If you decided you want to taper again soon to see if your head improves, keep a journal so you will know next time if your head improved or not.  If things get worse you can always go back up to the previous dose.

 

I agree about how much a human can endure.  I had high hopes and high expectations like you and when things got worse and worse, I got quite depressed and miserable.  I really don't know how anyone can cope with it all!  But I am surprised at what I did put up with and that I am still here, so our bodies and brains are truly amazing.  I have such awe and respect now for my poor body and brain at how it has managed all this, yes we are fearfully and wonderfully made! 

[LexAnger]

Thank you so much grandma for spending time, assuring me for the long hold with your own wisdom, and encouraging me with your own experience! This is life saving to me at this moment knowing how critical the right decision/movement can be in midst of this turmoil. It's so encouraging that the brain nonfunctional can eventually lift up.

 

I have been keeping a journey since day 1 of my taper, as a matter of fact, since the updose last June, I have been taking notes every hour or less as symptoms change within minutes. Sometimes I found it hard to see any pattern or get a clue even with the In depth journal for years.

 

I will be the first reader of your story. Your effort putting it up will help a lot here and I admire what you are doing to help others!!

 

Sorry ladybug for hijacking your thread. Thanks both for your help!

 

Take care and best wishes!

 

Lex

[grandmaD]

Thank you so much grandma for spending time, assuring me for the long hold with your own wisdom, and encouraging me with your own experience! This is life saving to me at this moment knowing how critical the right decision/movement can be in midst of this turmoil. It's so encouraging that the brain nonfunctional can eventually lift up.

 

I have been keeping a journey since day 1 of my taper, as a matter of fact, since the updose last June, I have been taking notes every hour or less as symptoms change within minutes. Sometimes I found it hard to see any pattern or get a clue even with the In depth journal for years.

 

I will be the first reader of your story. Your effort putting it up will help a lot here and I admire what you are doing to help others!!

 

Sorry ladybug for hijacking your thread. Thanks both for your help!

 

Take care and best wishes!

 

Lex

 

It might be a while before I get to post my results for holding, so I copied just these head issue ones, so you can see how it can be difficult to predict!

 

Thanks so much for your encouragement - gratefully received!  I was never going to join up after PP closed as I never had anything worthwhile to say, I was just so crap day in and day out.  Now that I have gotten somewhere with headaches, or should I say A WHOLE LOT LESS HEADACHES, I am in a much better place.  If I can encourage others, that is worthwhile because you end up feeling like you are useless, have no worth or value and that life has no purpose.  So, God bless you for YOUR encouragement!

 

Yes, sorry babygirl your thread has got hi-jacked!  Lex-Anger, do you have your own journal where we can talk?

 

I am truly astonished and amazed at my brain's ability to recover, even if it is slow.  It is good to rememeber not to listen to our emotions but remember that the body and brain has a powerful ability to heal itself, well, with God's help, of course!

 

I'm pleased you keep a journal, it may not make sense most of the time - I couldn't see any patterns either, but it is invaluable to compare notes from time to time or year to year.

 

Thanks too, for your best wishes, received them also with gratefulness! 

 

 

2014  6 MONTH HOLD

Head Pressure  -  Worse till 24 weeks.  Improved next drop.

Sore heads  -  Worse, worse and worse after 24 weeks.  Improved next drop.

H/a’s -  Worse, worse and worse after 24 weeks.  Improved next drop

 

2015   6 MONTH HOLD

Head pressure  -  Good improvement after 12 weeks then worse 12weeks.  Imp. next drop.

Sore head  -  Improved after 23 weeks.  Imp. next drop

Headache  -  Improved after 16 weeks then worse until week 24.  Imp with next drop.

[LexAnger]

Thank again so very much grandma!

Yes, let's move to my/your thread for further talks! I will see you soon in your thread.

 

Lex

[grandmaD]

Wanted to add that I am very sick of all of this. I first started tapering from 40mg in 2006! Yes, 2006! I think I may hold the record for slowest taper ever, so why do I still feel so awful? Things finally started to look up a bit this year and now I feel like it's coming down all around me. I just want to be a healthy, normal person. It's so hard to see a light at the end of the tunnel when you've been doing this so long. I can't tell you how frustrating it is to see so many people begin and end their tapers AND heal from it all while you are still just trudging along, no end in sight. Now that I am heading into what everyone says is the hardest part of a taper, AND being expected to work during that I don't know how I'm going to manage. This is so hard.

Sorry, got distracted there for a bit, but back to reading through your journal:

 

Sounds like a familiar song!  Oh how we get so fed up, right?  For you it has been so long and it sure does get the better of us.  We all just want to be normal and healthy.  I know what you mean about other people - that was one of the other reasons I didn't join for so long!  It was so discouraging to see others racing past!  My girlfriend told me "don't look at other people in their lanes as they run - stay in your own lane and look ahead!"  I've never forgotten that. 

 

How are you today?  What is this about having to work?  How are you coping now?  Hugs

[ladybug]

Yeah, I guess I'm resigned more or less to the fact that this is going to take a long time, but I guess it's better to have the "luxury" to go at your own pace than have to taper off quicker than your brain can handle for whatever reason. That doesn't mean I still don't get mad as hell about it or that I'm not bitter. Cause, believe me, I am! LOL.

 

Yes, I wrote this in the midst of one of my bad weeks which was also in the midst of a bad wave, so like a wave within a wave! I've mentioned here before, or maybe in another thread, how wacky my hormones have been the past couple of years. The week after my period I seem to get a big increase in symptoms and it's not uncommon for me to spend a couple of days in bed sobbing, wanting to die. Just dark depression. Then the the week of ovulation it's like the clouds part and I feel more and more like myself, until PMS hits then I get another increase in anxiety and insomnia, which eases when I start and then on day 5 the cloud begins to descend again. This happens every single month and I hate it.

 

I do believe the stress of starting a new job triggered that last wave which lasted about 2-3 months but it does seem to be getting better. Right now I'm in the post menstrual awfulness so my anxiety, poor sleep and stomach issues are peaking. No sobbing in bed though so that's good! Hopefully, things settle down in a few days and I'll be able to enjoy the little bit of normalcy I get every month. But even that is far from symptom free, I'm just in a good enough state of mind where I try hard to push it to the side and live as much as I can. I'm grateful that I get days like this at all cause I know so many here suffer with no windows at all.

 

So to answer your question, I'm coping ok. I just take every day as it comes and try not to worry TOO much about the future. HUGS

[grandmaD]

You expressed my thoughts exactly - I think I have started to come to that place where I have to accept it and get on with life the best I can and like you, it also means that at times I get fed up to the whatever it is and hate it all! 

 

I don't have to cope with the hormone issue every month, that's pretty crook, but I guess you understand what it is and that it will pass - but every month can come around pretty quickly!  I will pray for you that this will begin to ease off soon.

 

Are you still working then?  No doubt that will add to your stress levels.  I only have to do one little thing different to my routine and up goes the anxiety, insomnia, palpitations and breathlessness, etc.  Make sure you get plenty of rest and increase your relaxation/breathing exercises.  I have had to increase them to 3 times a day and it does help.  Hubby bought a pulse/oxygen meter on line for only $15 from China and my pulse was 112, so I lay down and did my exercises and it went back to 72!

 

I wish you all the best as you try and cope with this and work, Bless you, x

[grandmaD]

 

.Could it be that what I've always considered WD symptoms are actually side effects from the drug? I've been considering that lately.

 

Hi Ladybug, I'm still going thru your journal, so forgive me if you have answered this in following posts I've not yet read.

 

I never thought about some symptoms being side effects - well, except for headaches, which I do know are a side effect.  This is something to really think about - I will try and keep an eye on when my headaches increase, because it could mean I need to drop.  Of course they are also a w/d symptom, so it's a juggling act.

 

Anyway, what symptoms do you think might be a side effect for you?

 

I wonder if that would explain why, after holding for 6 months, many of mine got worse?

Hope you are still coping x

[ladybug]

 

 

.Could it be that what I've always considered WD symptoms are actually side effects from the drug? I've been considering that lately.

 

Hi Ladybug, I'm still going thru your journal, so forgive me if you have answered this in following posts I've not yet read.

 

I never thought about some symptoms being side effects - well, except for headaches, which I do know are a side effect.  This is something to really think about - I will try and keep an eye on when my headaches increase, because it could mean I need to drop.  Of course they are also a w/d symptom, so it's a juggling act.

 

Anyway, what symptoms do you think might be a side effect for you?

 

I wonder if that would explain why, after holding for 6 months, many of mine got worse?

Hope you are still coping x

 

 

Yes this is something I wonder about when certain symptoms seem to improve after dropping, mainly DR and depression. I really don't know though. Everyone here seems to believe that if you hold long enough all your symptoms will improve and that just hasn't been the case for me. DR seems to be the one that gets worse the longer I hold.

 

Thanks for thinking of me. I am still coping but this week has been very stressful at work. I worked all day today even though it was Saturday and it just became too much and I burst into tears while in a conference call with my boss. Thankfully, I don't think she noticed. I'm super worried that I am pushing myself too much and that I will crash but at the same time I need this job. To top it all off my mom is sick and is thinking of quitting her job to apply for disability which means I would have to pay ALL the bills, mine AND hers which I doubt I can afford on my measly salary. That is just so much pressure I don't even know how I can begin to cope with it all. Of course in her eyes I am "young" so I must be healthy, forget about WD. No one gets it and it is so frustrating and disheartening. Oh well, I will cross that bridge when I come to it I guess. Hope you are having a better day.

[romina95]

Hi ladybug,

I am new here. Wow , your patience and strength is admiring! I am sure you will make it, you are almost there!! I can relate to doctors telling you its a relapse, and that you need the drugs.I started at a young age so i grew up with the drugs and now as a young adult i dont know who the heck i am.. Lol. They told me it was my anxiety creating aaaall those symptoms, well i basically CT'd after 4,5 years and it was truly the worst thing ever i prayed everyday to just die in my sleep and it was horrible for half a year.. i had to start another drug and now im terrified to quit , i am on a cocktail of zoloft welbutrin and seroquel... paxil is truly an evil drug

[ladybug]

Hi ladybug,

I am new here. Wow , your patience and strength is admiring! I am sure you will make it, you are almost there!! I can relate to doctors telling you its a relapse, and that you need the drugs.I started at a young age so i grew up with the drugs and now as a young adult i dont know who the heck i am.. Lol. They told me it was my anxiety creating aaaall those symptoms, well i basically CT'd after 4,5 years and it was truly the worst thing ever i prayed everyday to just die in my sleep and it was horrible for half a year.. i had to start another drug and now im terrified to quit , i am on a cocktail of zoloft welbutrin and seroquel... paxil is truly an evil drug

 

That is very kind of you to say, Romina. Trust me I feel the opposite of strong most of the time and I guess it's easier to be patient when you feel you don't have a choice! I'm often very sad about how long this is taking me, but there is really nothing I can do. If I tapered faster I'm sure I would feel even worse.

 

I can totally relate to you as I was put on these drugs at 18 and now I'm 35. It's so odd to think that I've spent my entire adult life medicated. And, like you said, it's hard to know what is the real you when it's been so long.

 

I can also relate to your fear. I had a bad crash in 2002 after tapering too fast and the memory of that reminds me why I need to go slow. I totally understand the fear of beginning a new taper, I was also afraid but I truly believe as long as you go as slow as your brain needs you to, then it can be done. And it definitely helps to have a place where you can get support from others in similar situations, so you won't be alone in your journey.

[Songbird]

Yes this is something I wonder about when certain symptoms seem to improve after dropping, mainly DR and depression. I really don't know though. Everyone here seems to believe that if you hold long enough all your symptoms will improve and that just hasn't been the case for me. DR seems to be the one that gets worse the longer I hold.

 

I often feel better soon after dropping - usually a period of mild hypomania when I have increased energy and motivation, and better mood.  With tiny drops, this effect is very mild, so I tend to just enjoy the feeling of feeling better for a while.  If I start to feel too good, I get worried, because I was feeling really great just before my big crash, which in hindsight I realise was hypomania from the drop.

 

My theory on the long holds is that they tend to work for people who have never hit poop-out.  For people who did hit poop-out, there tends to be a period of some improvement after a drop, followed by feeling worse again.  This is based on all the threads I read over the years at the 'prior place' forum.  Since long holds don't tend to work for people who hit poop-out, it seems to be more important to make sure that the drop amounts are small enough not to create severe w/d, as updosing often doesn't seem to help in these cases.  At the other forum, I saw members who worked out their optimum drop amount and hold length so that they could stay relatively stable throughout their taper.  I say relatively stable, as it seemed that people in poop-out never reached true stability, just a kind of balance between w/d symptoms and poop-out symptoms that was bearable.

 

I have no idea what actually happens in the brain during poop-out, but I don't think it is the same as tolerance withdrawal of meds such as benzos and opiates, which can be alleviated by updosing.  When an SSRI hits poop-out, updosing works for some people for a short period , although often it doesn't, and when it does, once poop-out is reached again on the higher dose, further updosing doesn't tend to work.  I guess the brain can no longer maintain the artificial imbalances created by the drug.

 

Anyway, enough of my rambling.  I can't believe I never found your journal until now, Ladybug.  That was remiss of me.  I can really relate to your stress about work and making ends meet as I've been going through similar.

[ladybug]

 

Yes this is something I wonder about when certain symptoms seem to improve after dropping, mainly DR and depression. I really don't know though. Everyone here seems to believe that if you hold long enough all your symptoms will improve and that just hasn't been the case for me. DR seems to be the one that gets worse the longer I hold.

 

I often feel better soon after dropping - usually a period of mild hypomania when I have increased energy and motivation, and better mood.  With tiny drops, this effect is very mild, so I tend to just enjoy the feeling of feeling better for a while.  If I start to feel too good, I get worried, because I was feeling really great just before my big crash, which in hindsight I realise was hypomania from the drop.

 

My theory on the long holds is that they tend to work for people who have never hit poop-out.  For people who did hit poop-out, there tends to be a period of some improvement after a drop, followed by feeling worse again.  This is based on all the threads I read over the years at the 'prior place' forum.  Since long holds don't tend to work for people who hit poop-out, it seems to be more important to make sure that the drop amounts are small enough not to create severe w/d, as updosing often doesn't seem to help in these cases.  At the other forum, I saw members who worked out their optimum drop amount and hold length so that they could stay relatively stable throughout their taper.  I say relatively stable, as it seemed that people in poop-out never reached true stability, just a kind of balance between w/d symptoms and poop-out symptoms that was bearable.

 

I have no idea what actually happens in the brain during poop-out, but I don't think it is the same as tolerance withdrawal of meds such as benzos and opiates, which can be alleviated by updosing.  When an SSRI hits poop-out, updosing works for some people for a short period , although often it doesn't, and when it does, once poop-out is reached again on the higher dose, further updosing doesn't tend to work.  I guess the brain can no longer maintain the artificial imbalances created by the drug.

 

Anyway, enough of my rambling.  I can't believe I never found your journal until now, Ladybug.  That was remiss of me.  I can really relate to your stress about work and making ends meet as I've been going through similar.

 

 

I'm very happy you found my journal, Songbird! You always have such great advice and I value your opinion so much. You've been supporting me in my journey for so many years now, and I am beyond grateful. <3

 

But, yes I did make it a bit difficult to find as my name is different than it was at PP, although I started this journal when it was still around and I wanted a more anonymous name than I had there, now I wish I would have just kept it the same lol. There is also another Ladybug here so I'm sure it makes it even more confusing.

 

Anyway, as always, I think your opinion is SPOT ON. I noticed that over at PP there were more people who had similar experiences as mine, with the holding not necessarily helping as much as one would think and I always thought it had something to do with poop out. One situation that does make me question that is the experience of one of the mods here, Rhiannon. I think she might have been at PP at one time too, but she has been on multiple drugs for 20+ years and you would think that after that long you have pooped out to some degree, but she is one who always feels better the longer she holds, to the point of having no symptoms. I think Brass also feels better the longer he holds and he was in poop out when he started. Now that certainly doesn't mean I am against holds, if I am feeling particularly bad then of course I hold longer, and I do see some symptoms improve with a long hold, usually insomnia. But I do think, for some people, it's unrealistic to think that ALL your symptoms will improve significantly with a long hold. If you expect that every time, you might be waiting for years. At some point you just have to say "good enough" and try another drop.

 

Your comments about hypomania scare me a little though as one of my biggest worries is that all my windows are really just hypomania! Because sometimes it seems there is no middle ground between feeling awful and feeling better and wanting to enjoy every moment. I think I posted about it in a hypomania thread here. When I feel better it's almost like feeling too good, suddenly I have energy and I want to go out and enjoy it fully, I become very chatty, etc. And yes over at Prior Place I saw more than one case of someone feeling great right before a crash so I'm always scared of that. HOWEVER, my new opinion on the subject is that whether it's just feeling good or being hypomanic which may or may not lead to a crash, shouldn't I enjoy it regardless? Either I'm feeling good and nothing's going to happen or I'm feeling good and  it's the last time I'm going to feel good for a long time so might as well make the most of the experience.

 

Sorry to hear you are in a similar boat with the work stress. It's definitely a new thing for me as I was out of work for 5 years due to WD and before that I was on a high enough dose that stress didn't affect me the way it does now. I hope it eases for the both of us.

[LexAnger]

hi Songbird, I echo ladybug on your wise thoughts about the long hold for ppl reached pop out!

Great insight!!

 

Hope you both soon get a nice window and find the right strategy in your tapering!

 

Lex

[ladybug]

Well I've had a new and worrying symptom pop up lately. For the past two weeks I have had a headache every day, all day. Feels like my brain is being squeezed. It's causing light sensitivity and increased vision issues like floaters, visual snow, afterimages, jumping vision, etc. Most worrying is I will get this sensation like my brain is moving in my skull, like shifting. When I consult Dr. Google it tells me it's a sign of Multiple Sclerosis. NOT what I want to hear. Of course, Dr. Google once suggested I had the plague too...

 

Grandma D, I know you had an awful time for years with headaches, is this what they felt like? They started a couple of months since I've began working at home. I don't have a proper work area, so it's just me on my bed on my laptop for several hours. Not good. A couple of times while typing I started getting electrical shocks and tingling down my arms but that stopped. For months before that I'd been having issues with stiff neck, etc. My posture has always been horrendous. I also tried wearing my retainer less often (every other night) and though I got my braces off years ago, my teeth still shifted quickly so my retainer got tight again and I assume my bite is off. I don't have dental insurance so can't afford to see an orthodontist right now. Even when I had my braces on I never had headaches this frequently though.

 

I just think it's odd to have this brain pressure all day. It's really wearing me down, cause when I have it I can't do anything but lie in bed and hope it passes. If I take an aspirin it helps, but I don't think it's safe to take every day and I would only be treating the symptoms not the problem.

 

I just took an Epsom Salt bath and it helped for like 10 minutes and then brain pressure and moving was back. I booked a massage for tomorrow in hopes that this is just a tension issue or something.

 

Could this be WD, despite the fact I'm going so slow? I'm starting to get worried and feel like I should try and get an MRI or something.

[brassmonkey]

Hi Ladybug-- I'm sorry to hear about the new symptoms that have cropped up. I have had mild headaches for most of my taper, but nothing like you're talking about.  But I have read about a number of others who have.  One thing you can be pretty sure of is that it is not MS.  MS is one of those slow creeping sicknesses that you don't feel as it develops.  It doesn't just spring up over night.

 

Even with a nice slow taper like you've been doing there will be times that the WD shows up.  I had a lot of different things show up when I got into the 5mg range.  One would think that because the dose is getting so small that things would get easier, but it just keeps throwing stuff at you.  At least the waves will give way to nice windows, which keep getting better and longer.

 

(((((((((((((((((((((HUGS))))))))))))))))))))))

[ladybug]

Thank you so much, Brass. I teared up a little just reading your post. Of course, the rational part of my brain says "it's probably not MS" but I'm a master of the "What if's".

 

I've always known I had a problem with hyper vigilance, but never considered myself to have an issue with Health Anxiety. Now I understand a bit more how that can become an issue in WD. You just experience so many odd symptoms!

 

I've definitely always dreaded this dose range as it seems to be one a lot of people have issues with so it makes sense that no matter how slow you go you could still experience significant symptoms. I pray it's short lived like some other symptoms I've had.

 

Thanks again, Brass! You've really calmed my fears (for now). Haha. ((Hugs))

[grandmaD]

Well I've had a new and worrying symptom pop up lately. For the past two weeks I have had a headache every day, all day...

 

 

Oh, babygirl, so sorry to hear about getting headaches.  Did you get headaches before, or are these just different ones?

 

Ha, ha!  I thought I had MS for years and even had a friend tell me I probably had it!  last week my symptoms told me I had Parkinsons!  We need to stay away from Dr. Google!

 

They don't sound like my headaches.  The really bad ones I called migraines or tension heads, like there was a tight metal band around my head, putting pressure on.  Migraines got worse and increased until the 6.0mg drop at 3-6 migraines per drop.  Usually spent 1-3 days in bed with them.

 

Headaches were mostly bad, sore heads.  I didn't need to go to bed, but they were so bad I couldn't do anything.  These got more frequent at the 5.6mg drop (2.5 days a week) and then at 5.1mg drop (3 days a week) and again at 4.8mg drop (3.5 days a week) then at 4.6mg (3 days a week) and worse still at the 4.6mg hold (4.5 days a week).  All other times they were 2 a week and continue to average 2 a week.

 

Not a believer in supplements, but at the 6mg point I got desperate (with either a headache or a migraine every day PLUS pressure heads)  I got some tablets called "Migraine Reme-D" made by Blackmores - not sure if available in U.S.A. from chemist. I swear this stuff must work!

 

Migraines:  Every month after (except one month -  I saw improvement every month over the next 18months until last month, I had zero migraines!

Headaches:  Same deal, gradually came down each month (except one month) in frequency and in intensity.

 

I have noticed that they do go up and down but never as bad as at the 6mg drop.  I notice this was during times of stress (endoscopy, colonoscopy on two occasions and gall surgery).  Are you stressed as a result of w/d plus working?  That would do it.

[grandmaD]

.A couple of times while typing I started getting electrical shocks and tingling down my arms but that stopped. For months before that I'd been having issues with stiff neck, etc. My posture has always been horrendous.

.

If you have trouble with your back, then it is not good to sit on a bed and do anything.  You need a good chair with lumbar support.  You probably remember I had a lot of backaches in the past and this is my best advice.  This is a good place to start, so change this and see what happens to your headaches.

[grandmaD]

.I also tried wearing my retainer less often (every other night) and though I got my braces off years ago, my teeth still shifted quickly so my retainer got tight again and I assume my bite is off. I don't have dental insurance so can't afford to see an orthodontist right now. Even when I had my braces on I never had headaches this frequently though. 

I stopped wearing my retainer also and had to use it again just recently due to anxiety making me grind my teeth again.  My teeth had moved too so it didn't fit!  I persevered and persevered and wore it anyway and tried to get it into place.  My teeth hurt for a few weeks as a result, but I can now wear it.  It hasn't caused any more headaches so I doubt it is that.

 

You might want to get your eyes checked, however.

[grandmaD]

I just took an Epsom Salt bath and it helped for like 10 minutes and then brain pressure and moving was back. I booked a massage for tomorrow in hopes that this is just a tension issue or something.

 

Could this be WD, despite the fact I'm going so slow? I'm starting to get worried and feel like I should try and get an MRI or something.

You mention pressure here - is is head pressure do you think?  Is it painful?  That is how I differentiate.  If it is head pressure, that is different.  For me, head pressure is like a headache but without the pain.  You still cannot think properly, talk or function, it is quite debilitating I find.

 

I found Epsom salts made my head pressure heaps worse, but then I read you should introduce magnesium very, very slowly.  I also took just 1/2 magnesium tablet and ended up with bad head pressure.

 

Yes, it is probably w/d!  What do you mean by going slow, because it looks to me like you dropped about a week ago.  Your dates are all backwards to us here in Oz so I get confused trying to read them.  If you did drop last week, that could also explain it.

 

At the very least, see a doctor but I doubt you need an MRI but if you need to relieve your worrying, you could do it.  I was convinced I had a brain tumour!  It took 3 visits to the dr. before he would agree to do a brain scan and of course, there was no tumour!

 

I'll be praying for you babygirl, and hope that by the time we hear from you again, you are much better. x

[ladybug]

 

Well I've had a new and worrying symptom pop up lately. For the past two weeks I have had a headache every day, all day...

 

 

Oh, babygirl, so sorry to hear about getting headaches.  Did you get headaches before, or are these just different ones?

 

Ha, ha!  I thought I had MS for years and even had a friend tell me I probably had it!  last week my symptoms told me I had Parkinsons!  We need to stay away from Dr. Google!

 

They don't sound like my headaches.  The really bad ones I called migraines or tension heads, like there was a tight metal band around my head, putting pressure on.  Migraines got worse and increased until the 6.0mg drop at 3-6 migraines per drop.  Usually spent 1-3 days in bed with them.

 

Headaches were mostly bad, sore heads.  I didn't need to go to bed, but they were so bad I couldn't do anything.  These got more frequent at the 5.6mg drop (2.5 days a week) and then at 5.1mg drop (3 days a week) and again at 4.8mg drop (3.5 days a week) then at 4.6mg (3 days a week) and worse still at the 4.6mg hold (4.5 days a week).  All other times they were 2 a week and continue to average 2 a week.

 

Not a believer in supplements, but at the 6mg point I got desperate (with either a headache or a migraine every day PLUS pressure heads)  I got some tablets called "Migraine Reme-D" made by Blackmores - not sure if available in U.S.A. from chemist. I swear this stuff must work!

 

Migraines:  Every month after (except one month -  I saw improvement every month over the next 18months until last month, I had zero migraines!

Headaches:  Same deal, gradually came down each month (except one month) in frequency and in intensity.

 

I have noticed that they do go up and down but never as bad as at the 6mg drop.  I notice this was during times of stress (endoscopy, colonoscopy on two occasions and gall surgery).  Are you stressed as a result of w/d plus working?  That would do it.

 

 

Thank you, Gran. No, I can't recall ever having headaches this frequent. I will look those supplements up. Might be better than taking aspirin every day.

[ladybug]

 

.A couple of times while typing I started getting electrical shocks and tingling down my arms but that stopped. For months before that I'd been having issues with stiff neck, etc. My posture has always been horrendous.

.

If you have trouble with your back, then it is not good to sit on a bed and do anything.  You need a good chair with lumbar support.  You probably remember I had a lot of backaches in the past and this is my best advice.  This is a good place to start, so change this and see what happens to your headaches.

 

 

I don't really have trouble with my back, more with my neck. But yeah I am looking into getting a desk and work chair for when I work from home.

[ladybug]

 

I just took an Epsom Salt bath and it helped for like 10 minutes and then brain pressure and moving was back. I booked a massage for tomorrow in hopes that this is just a tension issue or something.

 

Could this be WD, despite the fact I'm going so slow? I'm starting to get worried and feel like I should try and get an MRI or something.

You mention pressure here - is is head pressure do you think?  Is it painful?  That is how I differentiate.  If it is head pressure, that is different.  For me, head pressure is like a headache but without the pain.  You still cannot think properly, talk or function, it is quite debilitating I find.

 

I found Epsom salts made my head pressure heaps worse, but then I read you should introduce magnesium very, very slowly.  I also took just 1/2 magnesium tablet and ended up with bad head pressure.

 

Yes, it is probably w/d!  What do you mean by going slow, because it looks to me like you dropped about a week ago.  Your dates are all backwards to us here in Oz so I get confused trying to read them.  If you did drop last week, that could also explain it.

 

At the very least, see a doctor but I doubt you need an MRI but if you need to relieve your worrying, you could do it.  I was convinced I had a brain tumour!  It took 3 visits to the dr. before he would agree to do a brain scan and of course, there was no tumour!

 

I'll be praying for you babygirl, and hope that by the time we hear from you again, you are much better. x

 

 

I have head pressure when I don't have the headaches, which are actual pain. Right now I have the head pressure, in the front of my head, with intermittent pain. I dropped after the headaches began in hopes that they were a sign that I had been on the dose too long or something. They haven't improved though. I taper at a rate of 1-2% every 6-8 weeks. I guess I will make an appointment with the doctor, but they probably won't be able to see me for at least a month.

[grandmaD]

 

 

 

 

Thank you, Gran. No, I can't recall ever having headaches this frequent. I will look those supplements up. Might be better than taking aspirin every day.

 

I don't know about aspirin, just that it is bad for your guts so make sure to take it with food.

 

These supplements have a lot of B vitamins in them which are supposed to be good for nerves.  I recall my step-father being told to take Vit. B complex (he was an alcoholic) so no doubt they would help in w/d.  before I found them, I read in my herb book that feverfew was good for headaches and i tried to buy it to grow - it said just chew one leaf a day!  Anyway, I was surprised to discover that is what is in this supplement.  I swear by it and am too scared to go off it!   Not until I am well and truly drug free, anyway!

[ladybug]

 

.I also tried wearing my retainer less often (every other night) and though I got my braces off years ago, my teeth still shifted quickly so my retainer got tight again and I assume my bite is off. I don't have dental insurance so can't afford to see an orthodontist right now. Even when I had my braces on I never had headaches this frequently though. 

I stopped wearing my retainer also and had to use it again just recently due to anxiety making me grind my teeth again.  My teeth had moved too so it didn't fit!  I persevered and persevered and wore it anyway and tried to get it into place.  My teeth hurt for a few weeks as a result, but I can now wear it.  It hasn't caused any more headaches so I doubt it is that.

 

You might want to get your eyes checked, however.

 

 

I was thinking about this and I think you're right. If it was my retainer my actual teeth would be sensitive but they aren't really. A little bit, but they were much worse when I had braces and I didn't have the headaches then. I've thought about getting my eyes checked so that is next on the list for sure.

[grandmaD]

 

 

.A couple of times while typing I started getting electrical shocks and tingling down my arms but that stopped. For months before that I'd been having issues with stiff neck, etc. My posture has always been horrendous.

.

If you have trouble with your back, then it is not good to sit on a bed and do anything.  You need a good chair with lumbar support.  You probably remember I had a lot of backaches in the past and this is my best advice.  This is a good place to start, so change this and see what happens to your headaches.

 

 

I don't really have trouble with my back, more with my neck. But yeah I am looking into getting a desk and work chair for when I work from home.

 

It really sounds like a posture problem.  I sometimes wonder if my headaches are from bad posture,but have not documented that one!

[ladybug]

Well I had the massage today and it hasn't helped with the headaches like I hoped it would. Only helped temporarily with the neck tension and he really worked me over! Sigh.