grandmaD: turtle here

[brassmonkey]

Hope you have a wonderful trip and forget all about us for a while. Taz is on my short list for future trips.

 

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

[doggiemama]

Hi granma I know having people around me at one stage was so stressful and I was anxiety ridden , but now I get very stressed when I don't have anyone around but I suppose its also because my husband has terminal cancer and is bed ridden and hardly sleeps so I'm on duty 24\7 and its good to have others to chat to. I hope you enjoy your holiday sometimes a change of senary really helps

[LexAnger]

Glad something got better for you Grandma!

Wish you a fantastic trip!

 

Lex

[grandmaD]

Hi there from the "ends of the earth"!  We are still in Tassie, on the last leg of our journey, so I thought I'd do an update. 

 

When we left I was in week 8 taper, thinking I may be a  lot better by week 8, but not to be and probably exacerbated by the excitement and stress of the upcoming trip.  I continued to go downhill, almost to rock bottom after we left.  All symptoms went sky high.  It was a horrendous week and I was sorry I had decided to go!  To a certain extent however, I was able to enjoy the scenery which is very beautiful and despite many days of DP/DR I was able to appreciate it better than all previous trips.  Coming across on the boat was probably an anxious/exciting/stressful event with very little sleep that night.  The crappy/hard beds in the first couple of places made things worse, with insomnia up to 5 hours for several nights causing backache and hip pain, and that just made everything else worse.  After that I learned to ask for a comfortable bed and from then on we did get better beds with insomnia only for 1 to 3 hours. 

 

The second week was not much better as several symptoms got worse, like pressure heads, insomnia, lethargy, palpitations and vibrations and very painful burning legs.  I found I did not cope with moving from place to place every 2 days and this also aggravated all symptoms.  When we arrived in Hobart and stayed with friends for 5 days in a row, I began to improve to "reasonably tolerable" after 3 days and had 1 or 2 fairly good days and was able to go for my first walk.

 

This last week has seen 2 fairly good days, with an improvement in head pressure which helps a lot with DP/DR but still difficult with insomnia most nights making me lethargic next days.  At last my pulse has come down from the 100's down to the 90's, still not good but at least an improvement. 

 

If you were in good health, Tassie is certainly a wonderful place to come to with constantly changing scenery from hills to mountains to rainforests, to the sea and sometimes all 3 at once!  Surprising for us is that it is so green everywhere.  We are from the country in NSW where it is usually dry everywhere and you drive for hours and not see anything, but everything here is close by, like just a few hours from the top to the bottom of the island.

 

We have just a few days left and back again on the boat, but this time a day trip, which I am glad for, as I wouldn't sleep.  I can only say I am looking forward VERY MUCH to going home!  I think I will need several weeks of rest at home to get over it!

[LexAnger]

So good to hear you GrandmaD. You have been missed!

We know those nasty symptoms won't go away suddenly but very happy you had some good time enjoying the beauty of nature! You did great indeed making each day out and around!

 

Hugs from the other side of the globe.

Lex

[grandmaD]

Thanks LA, that is so sweet!  Thanks for your hugs, too with hugs back!   Yes, I realise it is going to take some time, and that is my fault for not stopping a couple of tapers ago.  I guess that first ne that was bad, I was hoping was just a bad drop, because it does happen.  But then when the next one was bad again, I really should have stopped then, but I dropped again, and symptoms just continued to get worse and then with this trip all made worse.  It sure is insidious how it just creeps up so slowly and because of that, I believe it will be just as slow to improve.

 

Anyway, I am now in week 1 of holding mode, so I hold out hope for recovery and once I get home and back in my routine and my bed, I am sure I will cope much better.  Yes, you are right, and I can be proud of myself that I did at least attempt this holiday and get out and about.  When I stabilise I will treat myself to a trip away in our caravan!

 

I am happy for you that you are seeing some nice changes, that is always encouraging and gives us hope to keep going.  Turtling on....

[grandmaD]

Back home and now to recover from a whirllwind of a trip that was totally exhausting!

 

Update from last taper 3.5mg

 

THINGS THAT IMPROVED

Head banging sensation

Rapid pulse

Headaches

 

THINGS THAT GOT WORSE

Palpitations (worst result in the 5 years)

Insomnia (worst result ever)

Indigestion (due to the trip and eating wrong foods)

Lethargy

Number good days

Number bad days

Head vibrations

Head pressure

Breathlessness

Sore heads

Anxiety

Body vibrations

 

Now that i am holding, I hope to see some improvements in symptoms.  Those symptoms that worsened were exacerbated by the trip, I am sure as I didn't cope very well with it but just made the most of what I could.  I am very glad to be home and plan to rest as much as possible.  How are all you guys been since I left and how are you all now?

[grandmaD]

It is hard to believe we have been back a week now.  I feel more oriented some days and thought I was better in the head and more "with it", yet I still left the kettle on the stove and forgot it and it boiled dry both times.

 

I have had episodes of feeling weak, slow and heavy all through w/d usually for up to 3 days but I am feeling it now for a week, in fact worse, more like fatigue. I started the vauuming but couldn't do it or the moppiing.   I have forced myself to go for a 15 min walk each day and started to do 10mins weeding, but it knocked me up and I needed to lie down afterwards in the morning.

 

So it's out with another jig saw puzzle and hope that next week is a better update as far as energy goes.

[LexAnger]

I'm very sorry GrandmaD that things are continuously tough for you. It happened me before too after each trip I made, making me wonder if anything wrong with my house, as I usually could get some good days during the trip. It must be the extra energy used for the trip even we don't feel we worked harder. I hope you will recover very soon.

 

Hugs,

Lex

[grandmaD]

Thanks LA for that, I feel more reassured!  I was beginning to wonder if it was the house or my cooking or just all in my head!  It sure is strange.  I still have extreme lethargy and tiredness and doing as little as possible.  I think you might be right as I am amazed at how I was able to cope for trip, despite being in a bad place.  I think the body must be able to push on through like you said and then it plays "catch up" later on.  It made me recall how so many times in the past I would go to special events like birthdays, etc. not wanting to go but surprised at how well I coped.  I also remember how I would have a 3 day headache afterwards, so that explains that too.

 

I managed 3 or 4 fifteen minute walks this week, but got knocked up so have been having mid morning rests again.  The halter monitor I did before leaving for our trip didn't work so I had to do it again and suffered extreme itching for the whole week.  I an anti-histamine for 1 night but was still awake hours later and took another one and that did the trick to help me sleep and that gave me 2 days of beautiful inner calm from anxiety but didn't help itching.  It also made me even more lethargic, so I just had to put up with the stupid itching.

 

I didn't recall it itched me before we went away but I looked back in my notes and found it did and that I took an anti-histamine then but it didn't help with the itching.  This has got me rather scared, this forgetting things a lot.  Does our memory come back or is this w/d plus old age???  I am quite worried about this issue.

 

This week also saw a bad headache and needing 2 migraine tabs (codeine and doxylammine succinate) which gave me another 2 days of calm from high body vibes, palpitations and breathlessness, etc. but again, made me very dopey for 2 days.  Then, day 3, which I have noticed happened before, everything goes sky high again and is unbearable.  Despite being extremely exhausted at bedtime, I couldn't sleep because of the anxiety and the incredibly painful nerve burning sensation in my legs.  Over the next 4-5 hours I took 2 lots of panadol and ibuprofen to no avail and ended up getting up in the early hours and making a cuppa and having porridge and watching Joyce Meyer on tv!   As a result, I am quite fatigued again today, but I think my head is improving again in clarity.  Getting out another jig saw and hope next week is better....  by the way LA, can you remember how long it took you to get over a trip???

[LexAnger]

Hmm, I don't feel it was worse post trip then pre, more like the trip was a nice break from the daily usual pattern of symptoms, then the WD resumes after the trip and back to square one.

[grandmaD]

Weekly update: 

Now 3 weeks since returning from our trip and I am just starting to regain some energy.  I feel I have gone from bad fatigue to my usual lelhargy, heaviness, weakness and slow, tired state.  I was able to do most of the vacuuming this week so that shows some improvement in that area.  I have found I can only do 15minutes of energetic type things like walking (twice this week) and weeding (twice this week).  I had 2 afternoons that I felt almost back to my pre-gall surgery "normal" 15 months ago.  My plan is to up the energy requiring things to 20mins this week.

 

Just doing that couple of days weeding for only 15 mins. has caused muscle cramps with a couple of days all over aching and my hips are crook again.  In that direction, feels like muscle weakness bordering on spasms, so had a couple of days break from weeding until that comes good or at least better.

 

Sleep is pretty much the same, taking 2 hours to get to sleep but now wake after only 1 or 1.5 hours the first few times and then after every 2 hours.  As a result I feel like I haven't had any quality of sleep so feel tired when I get up and through the day.  This is usually because of anxiety/palpitations and severe leg pain.

 

I can't believe this, but the 2nd time of doing the 24 hour halter monitor has failed again.  I told pathology I'm not doing it again as it was stressful each time with severe itching from the leads.  I see the Dr. in a few weeks time and hope that is okay because apparently my ECG showed the |Wenkeback thing was worse.  I am also hoping that perhaps if I went to the big smoke (city) they have something similar they can test me with that doesn't make me itch like crazy.

[Reflex]

Hi Grandma D

I have scanned your thread and notified that you have been tapering for a long time but also had surgery on your gallbladder . Am I right?

Was this during tapering and withdrawal?

Did you notice your withdrawal was worse following surgery?

 

I have been tapering from Prozac for 22 months following a failed taper from citalapram. I had a hip replacement five weeks ago . Now that I have stopped taking the codeine as a pain killer which masked everything I feel my body is adjusting. It is no way as bad as the withdrawal from Citalapram. I feel anxious in the mornings on waking, sick throughout the day and have no appetite. I am worrying that this is the start of withdrawal from the codeine, the effects of the operation or a wave from the Prozac although I have held on this small dose for four months now.

I hope you have a better day today.

Reflex

[LexAnger]

Hi GrandmaD,

 

Sorry I have been in constant surviving mode not being able to catch up with you.

 

I'm glad you regained some energy from the tiredness of the trip. I admire you still trying to do some work around the house! God have mercy on all of us, speeding the healing!

 

I remember you mentioned itchiness allover moving around before, and now it sounds you got itchy from using the monitor. I just wonder if they are the same type, and did the original itchiness went easy by its own fro a while?

 

Lately I started having the same just like you described, here and there mipoving around without rash or any abnormal looks, also feels like spider webs on my skin, sometimes feels like a hair on my face. My skin is very dry too, but the itchiness is different from the normal dry skin type.

 

I don't have enough experience to tell if it's from WD or drug reaction. I searched around hearing ppl saying they got it when they start taking lex, and also heard ppl having it when they stop taking SSirs any kind.

 

Hope you have a better day today, and hang in!

Hugs,

Lex

[ladybug]

 

 

Weekly update: 

Now 3 weeks since returning from our trip and I am just starting to regain some energy.  I feel I have gone from bad fatigue to my usual lelhargy, heaviness, weakness and slow, tired state.  I was able to do most of the vacuuming this week so that shows some improvement in that area.  I have found I can only do 15minutes of energetic type things like walking (twice this week) and weeding (twice this week).  I had 2 afternoons that I felt almost back to my pre-gall surgery "normal" 15 months ago.  My plan is to up the energy requiring things to 20mins this week.

 

Just doing that couple of days weeding for only 15 mins. has caused muscle cramps with a couple of days all over aching and my hips are crook again.  In that direction, feels like muscle weakness bordering on spasms, so had a couple of days break from weeding until that comes good or at least better.

 

So glad to hear your energy is improving! Sorry about the muscle cramps though. I have also noticed that I get aches from doing things that aren't even that strenuous! Like lifting a heavy laundry basket will give me sore arms the next day. I am very out of shape due to always being fatigued and not being able to tolerate exercise though so it could just be that. But yes, please be easy on yourself and work your way up slowly.

 

Sleep is pretty much the same, taking 2 hours to get to sleep but now wake after only 1 or 1.5 hours the first few times and then after every 2 hours.  As a result I feel like I haven't had any quality of sleep so feel tired when I get up and through the day.  This is usually because of anxiety/palpitations and severe leg pain.

 

When you wake up does it always take you a long time to fall asleep again? I know I never sleep through the night but in windows I wake up like 3-4 times but fall back asleep within 5-10 minutes. In waves the time it takes me to fall back asleep gets longer and can sometimes take hours. I'm sorry about the palps and leg pain. I wish you could tolerate magnesium. I know I'm sensitive to it too so I don't take it either. I know there is a lot of magnesium in nuts, I wonder if that would help at all?

 

I can't believe this, but the 2nd time of doing the 24 hour halter monitor has failed again.  I told pathology I'm not doing it again as it was stressful each time with severe itching from the leads.  I see the Dr. in a few weeks time and hope that is okay because apparently my ECG showed the |Wenkeback thing was worse.  I am also hoping that perhaps if I went to the big smoke (city) they have something similar they can test me with that doesn't make me itch like crazy.

 

My mom also did a holter monitor and had the same horrible itching and she had to do it for 48 hours! I remember when she got it taken off she had big red welts where the pads had been. I guess it's the glue that people react to but I remember Googling it and many others experienced the same thing. I hope you can find an alternative so you can get to the bottom of what's going on.

[grandmaD]

Weekly update

I think energy is returning, I am not so fatigued but still have had several days of lethargy.  I only made 1 attempt this week to weed for 10-15mins and it resulted in a 2 day headache.  Perhaps it is from bending up and down.    Only 1 good day again for this week.

Headaches, Pressure heads, head banging sensation and head vibes

All these had seen major improvement during the last 12 months but since holding, they have all got worse, along with tiredness.  This seemed to be the case with the 2 previous holds in the past 2 years.  I am not sure why they would get worse unless they had got used to the drops and are now over-reacting to the hold?  Anyone else have this experience when holding?

Insomnia

Same as last week at 3 nights but instead of 2-5 was 2-4hours.  I notice that quite often there is some improvement in symptoms, but the change is so slow it is exasperating!  Just the same, any slight improvement is still good!

Anxiety issues

This week saw a huge jump in palpitations, breathlessness and anxiety.  I think this was provoked by an invitation to a 60^th birthday in the big smoke, an hour away.  I really didn’t want to go and as it turned out, had a headache the day before (which I put down to weeding the day before that) and the day of the birthday, so I didn’t want to go.  I know you all also struggle with events like this and the thoughts going round and round “should I?’ or shouldn’t I?”  In the end I thought it was “the right thing to do, to go” so I took my strong migraine painkillers and I went but was dopey as anything.  The nice thing about them is the resultant calm in body and body and mind and better sleep for 2 days!

Minor issues

Despite my holding, I still have experienced the same old regulars like itching in various places, lumps that come up on my face that are itchy and the red pimple like things that come up, also itchy regularly with each drop.  Again, this is surprising as you would think they would stop when holding.

[grandmaD]

Hi Grandma D

I have scanned your thread and notified that you have been tapering for a long time but also had surgery on your gallbladder . Am I right?

That's right

Was this during tapering and withdrawal?

Yes, withdrawal was still happening but I had stopped tapering and did a hold before surgery and afterwards

Did you notice your withdrawal was worse following surgery?

Initially all symptoms were good, that is not noticeable, due to the anaesthetic and the strong codeine tabs and then panadol for weeks after that.  I was extremely fatigued for a good 6 months and could do NOTHING and doing NOTHING also helped with symptoms of stress.  Many sympoms improved as time went by, but put that down to the hold (6months all up)

I have been tapering from Prozac for 22 months following a failed taper from citalapram. I had a hip replacement five weeks ago . Now that I have stopped taking the codeine as a pain killer which masked everything I feel my body is adjusting. It is no way as bad as the withdrawal from Citalapram. I feel anxious in the mornings on waking, sick throughout the day and have no appetite. I am worrying that this is the start of withdrawal from the codeine, the effects of the operation or a wave from the Prozac although I have held on this small dose for four months now.

I am sorry your taper failed - how quick was it and will you try again?  Did you taper from the codeine?  I am sorry I don't know much about its affects/dependency/withdrawal but I do take it fairly regularly (weekly) but only if I have a bad headache or high anxiety and often wonder if I may have a dependency, but reluctant to stop it because I get 2 days relief with it which helps me get through the week and to sleep better for 1-2 nights.

I hope you have a better day today.

Thank you!  How have you been?

Reflex

[grandmaD]

Hi GrandmaD,

 

Sorry I have been in constant surviving mode not being able to catch up with you.

No worries LA!  I know how it is to be just treading water trying to keep your head above the waves and catch a breath!

I'm glad you regained some energy from the tiredness of the trip. I admire you still trying to do some work around the house! God have mercy on all of us, speeding the healing!

Amen!  This is our only hope!

I remember you mentioned itchiness allover moving around before, and now it sounds you got itchy from using the monitor. I just wonder if they are the same type, and did the original itchiness went easy by its own fro a while?

Different itchies.  The others come and go with each taper.  This has happened every time I have the halter monitor put on and from the bandages after gall surgery.  I was through the roof as I had to leave those on for weeks (until they fell of) and crazy with itching.  I thought the halter was only on 24 hours and I'd be okay, but the itching continued for a week after!

Lately I started having the same just like you described, here and there mipoving around without rash or any abnormal looks, also feels like spider webs on my skin, sometimes feels like a hair on my face. My skin is very dry too, but the itchiness is different from the normal dry skin type.

This sounds like my w/d itchies.  Come and go - various places.  Most annoying in bed at night when I get warm.  A good moisturiser does help.  I started using coconut oil all over my body.  I didn't realise a/d's dry up your skin until Dr. couldn't put the needle through the skin in my face when doing stitches as it was so tough!  He put me onto moisturisers.

Hope you have a better day today, and hang in!

Thanks Lex.  I'm getting there, but it is so slow.  Fatigue is heaps better, just some lethargy and feeling tired about an hour after getting up!  How are you now?

 

[grandmaD]

 

So glad to hear your energy is improving! Sorry about the muscle cramps though. I have also noticed that I get aches from doing things that aren't even that strenuous! Like lifting a heavy laundry basket will give me sore arms the next day. I am very out of shape due to always being fatigued and not being able to tolerate exercise though so it could just be that. But yes, please be easy on yourself and work your way up slowly.

Oh, wow!  That is good to know you have same thing because I started to worry I have MS or something, but maybe it is just w/d.  I have cramps and muscle weakness before but not for so long, but I think the trip contributed to this somewhat.  Yes, you are right, trying to walk each day again now, started today for 15mns to keep fit and hubby has suggested when sitting watching tv  to lift up cans of fruit (like a bar-bell) to strengthen arms!  It is pouring rain again today, so that helps me not get so agitated about the weeds!

 

When you wake up does it always take you a long time to fall asleep again? I know I never sleep through the night but in windows I wake up like 3-4 times but fall back asleep within 5-10 minutes. In waves the time it takes me to fall back asleep gets longer and can sometimes take hours.

Yes, it takes up to 30mins to fall asleep again the first 3 times.  The 4th time I wake up is when I have difficulty getting back to sleep at all and can be awake from 1-5hours.

It really sucks doesn't it.  I have to keep telling myself at least I am resting, but I am sure the lack of quality sleep contributes to daytime symtoms worsening.  I used to sleep for 2 hours but now that has gone to 1 hour the first time and then 2 hours the next time.

I'm sorry about the palps and leg pain. I wish you could tolerate magnesium. I know I'm sensitive to it too so I don't take it either. I know there is a lot of magnesium in nuts, I wonder if that would help at all?

Which nuts?  At first I thought you meant magnesium-nut type people!  Oh, the poor brain!  Yes, I have tried magnesium lots of times but I could try again with another foot bath with a small amount of epsom salts.  MY hip has been really bad lately and yesterday so painful I took some strong anti-inflammatorys and I noticed that also helped a bit with the leg burning and cramps last night.   Unfortunately like many meds that do help, you cannot take them more than 3 days.

My mom also did a holter monitor and had the same horrible itching and she had to do it for 48 hours! I remember when she got it taken off she had big red welts where the pads had been. I guess it's the glue that people react to but I remember Googling it and many others experienced the same thing. I hope you can find an alternative so you can get to the bottom of what's going on.

Surely they have some other method??  I go to the Dr. in a few weeks so will ask him then.

How are you doing now?  Are your symptoms improving as the weeks pass?  What week are you in now?

 

[LexAnger]

Hi GrandmaD,

 

You are always so kind responding in such a detail with kind consideration!nthank you so much for taking time and making great effort helping me and others by sharing your experience and thought!

 

That helps a lot! Now I know the new itchy thing is from WD, time to hold!

It's been my constant struggling separating WD from Reaction even since I was caught in between the two evils.

 

Have you find the recent long hold provided good stability?

 

You are always in my thoughts and please continue hang in.

 

Hugs,

Lex

[doggiemama]

I stopped ADs in september 2014 and went to a beautiful part of my country in the desember and all I can say is I hated every minuit of it could not wait to get back . Everything terrified me , and what was so strange is at the same time it was beautiful but I could not appreciate it

[grandmaD]

Hi GrandmaD,

It's been my constant struggling separating WD from Reaction even since I was caught in between the two evils.

Thanks LA for you kind and beautiful words, you are a wonderful source of strength of comfort!  It must be very difficult trying to decipher between reaction and W/D.  I think headaches were my only side effect from the a/d but I had so many w/d symptoms I simply could not go faster because of them.  Headaches are also a w/d symptom, so that made it even harder!  You have to do what you believe is working best for you!

Have you find the recent long hold provided good stability?

Sadly, NO!   Actually, that's wrong, I have STABILISED.  I give myself a 'score" compared to how I was at the previous crash last year.  And when I crashed this year it was 2, so very, very low.  I went up to 4 and 5 and now at 5 and 6 but stayed at that place for the last 4 weeks.  This same time in previous hold (2015) I had scores of around 8, 9 and 10.   When I get to 11 and 12 I am coping and my highest ever was 13 when I called that "excellent" and almost normal!

 

I am now struggling with the discouragement this brings with it.  I have to keep on top of this one as I have come to realise that my disappointment leads to discouragement which leads me to despair and then depression - a downward spiral.  It is extremely difficult to keep my thoughts positive and to keep on trying and to have any hope., but I know I must fight it.  I hope to update next week with a comparison of all symptoms since the previous drop.

You are always in my thoughts and please continue hang in.

Thanks LA, you continue to encourage me to keep going, especially in light of what you are coping with and battling on yourself!  You are such a blessing!

Hugs,

Lex

[grandmaD]

I stopped ADs in september 2014 and went to a beautiful part of my country in the desember and all I can say is I hated every minuit of it could not wait to get back . Everything terrified me , and what was so strange is at the same time it was beautiful but I could not appreciate it

Did you cold turkey?  What a/d were you on?  I am sorry to hear about your experience.  I didn't realise how glad I was to be back home until I got back!  At least I was able to enjoy some of the beautiful scenery, but  you always think how nice it would be to be fully well and enjoy it more fully.  I have come to the place where I am wondering if I will ever get to that place and I think I better just do stuff and enjoy what I can while I can.  How are you now?

[grandmaD]

Weekly update

Many days of lethargy (5) and one day of fatigue with only 1 good day again this week.

Pressure heads, headaches, head vibrations and head banging sensation worse, just about every day, which has been quite debilitating.

 

I am surprised I have got so bad for so long.  I realise it was firstly due to the crash in August and made worse I believe by going on that trip to Tassie.  However we have been home 5 weeks now and I really thought I would see some improvement by now.  I have stabilized, but not at a good place and seem to be stuck in that same low place for the last 7 weeks.

 

There was a good improvement this week for insomnia and rapid pulse which has come down in the last few weeks from 100’s to the 90’s and now in the 80’s which surely must help everything else.  Palpitations and breathlessness were pretty much the same – daily.

 

The other major issue has been muscle weakness in legs and the severe burning leg pain and aching.  Also aches/tightness around ribcage, so no walking much.  This causes aches and pains with a lot of painkillers this week (18).  On to another week … working on results of the hold from previous drop.

[Altostrata]

Are you able to do at least 1/2 hour of walking every day?

[grandmaD]

Alto thanks for your suggestiion, but I am strong believer in walking, so don't worry about that.  I always walk when I can for as long as I can.  I used to do 30mins but that's a while ago now because I kept going downhill and couldn't walk at all, trying to conserve energy - due to fatigue lately.  I just started back again this week for 10 - 15mins trying to build it up again, so I'm getting there (again!).  Just keep going round and round that mountain!  I miss it if I don't because I enjoy it and it seems to help me when I can see nature, the sky, trees, etc.

[grandmaD]

Doctors

 

I noticed that I was “running out of scripts” quickly which was very odd as I don’t get them filled every month any more.  The chemist keeps them and said that the 12months were up, and that was why.  That means either a visit to the Dr. just to get a script (more money and time) or ring up (and they still charge a fee for it).  So I got annoyed about that!  But then my script “ran out” again and the 12 months was definitely not up!  When I checked it, I saw that the Dr. had only given me 1 repeat instead of the usual 5.  This means having to go back more often more scripts, so I’m not impressed.  I already resent paying for the rotten drug that has been killing me and now extra drs visits!  In all fairness to the Dr it could be because I am only taking ¼ of a tablet now, and don't need so many scripts, but I began to wonder if it was a way of making me go back for more visits!

 

He has had me go back recently more often for a visit, just to get results from tests which I also find annoying.  Then when I told him about doing the hold, he wanted me back in a month.  This is quite absurd because for 6 years now I don’t go to him about withdrawal, only for regular tests or check-ups (which is not very often at all) if something is wrong.  Also, it would have made more sense to have regular check-ups during tapering, not during holding.  However, I thought perhaps he cared about my progress, but no, after today's visit I think he still does not get it.

 

Back from my Drs. visit today and feeling quite annoyed again because I took my comparison chart from previous taper showing what had improved and what had worsened and he wasn’t very interested!  I thought he might keep it and put it with my file, but no.  I thought he wasn’t even listening, but he was because he suggested I “take some Endep to help with the head issues.”  That sounded to me like: “this is a special med/painkiller that helps with head issues.”  No mention of it being another a/d.

 

I realise now more than ever what I have been reading all along – that is that Drs. are there to sell you drugs, just like the butcher wants to sell you meat and the baker wants to sell you bread! Perhaps that is why he is so nonchalant, because he sees it as his job to give me drugs.  He wanted me to switch to Prozac last year which I declined because when I researched this site, I couldn’t find sufficient evidence that it was successful.  He says it is successful because of its longer half-life.  However, that is only half the story, as we know here so I asked about the guarantee that withdrawal symptoms wouldn’t worsen by going right off the Paxil!   I now realise now he has to make money somehow – and that’s to keep you coming back to him.

 

Now if I was tapering I would be even more tempted by the Endep but at this point, where I am holding and hoping to see some improvement, I don’t think it is a good idea, but if others think it wouldn’t do any harm, let me know!  My rationale is that my brain is now trying to adjust to a hold after getting worse and worse from previous couple of tapers (and the first 4 weeks hold have been worse than the previous drop for many symptoms) and to add more serotonin would only confuse the issue I suspect.

 

It does make sense to take something to help and the desire to feel “normal” and the temptation to take something artificial to alleviate my suffering is definitely a strong pull.  I can see now that his job is to help alleviate pain and he does that with drugs – that’s his line of business.  He earns a living selling drugs.  I think this is just one of the issues I (and all of us) have to come to terms with!  So at last I get it!

[Altostrata]

Did he give you a prescription for the full 12 months?

[LexAnger]

It's sad the whole society is becoming more and more profit/ self benefit oriented. This is consistent with the crime of the psych drug, from pharma companies, FDA, doctors.

 

I never told my physician what dose I'm at, and don't see him ( or any doctor) for the med caused issues. So I get the 5mg/5ml liquid all the time which can last 2-3 times for the prescribed duration as I taper down. In US, there is also a mail-in order type of prescription for 90 day supply per script.

[grandmaD]

Did he give you a prescription for the full 12 months?

As far as I know the script is good for 12 months.  I have figured that perhaps because I am now down to about 1/4 tablet that he sees that instead of a script lasting 1 month, it will last 4 months so maybe that's why he did it.  Normally you get a months supply of tablets with 1 script and you get 5 repeats which means that particular script will last 6 months on a whole tablet.  I hope that makes sense.

[grandmaD]

UPDATE FROM PREVIOUS 3.5mg drop to 8 WEEK HOLD

 

Things that improved:           

Indigestion

Insomnia

Rapid pulse

Breathlessness

Sore heads

 

Things that remained the same:

Palpitations

Head vibrations

Bad days

Anxiety

 

Things that got worse:

Head banging

Good days

Head pressure

Headaches

Tight chest                   

 

• Other things worse include muscle weakness with aches and pains, especially burning leg pain and tingling.  Also joint aches, (hips, knees, back, ankles) shooting pains and sore bones. Ear ringing shot up to high and is extremely intense at times. 
• Belly, guts, chest and ribcage aches and pains remain the same.
• Other minor symptoms remain the same at a mild level.

[grandmaD]

Tapering, time and choices

 

This week, yet again, I faced another one of those times when I was tempted to take yet another drug.  The nice kind doctor doctor offered me Endep to help with my head issues.

I interpreted that as “here’s a painkiller to help ease your suffering.”  And no, he did not mention that this was another a/d!  I think everyone knows the huge desire to escape the pain and suffering and this was so hard.  It was only after visiting my friend who practically jumped off her chair saying “no, no, don’t do it!”

 

When I began to think more clearly I realized that adding another a/d would only increase the serotonin and put me backwards as far as tapering went and probably confuse my brain even more!

 

I have found it takes A LONG, LONG, LONG, LONG TIME for the brain to adjust to the changes and I think that has been my biggest problem.  I would have to say in a nutshell that not being prepared to put up with the agony is one of our biggest issues and the other one is a lack of patience and endurance.

 

For example, after a drop, when I feel so crap, the temptation is very strong at that point to switch drugs or up-dose or do something stupid like CT or drop again!  It is at this point we are very vulnerable and when the doctor offers alternatives, we jump at them, but that often creates a circus of taking this, and then that and then the other, only to end up back on our original poison!  It has been very surprising to me that it takes at least 8 weeks to adjust and many times 12 weeks and sometimes even longer.  I think the time issue is the biggest thing we have to deal with – and the patience and long suffering required to meet it. 

 

The same thing goes for the time it takes to get worse.  When I CT I was fine for several months and able to deal with it, but what I didn’t realise is how insidious it is and how it creeps up on you super-slowly and you just get worse and worse and worse and by that time you begin to panic and I also believe that by that time, there is nothing that is going to help you.  So I guess because it takes so long to deteriorate, it makes sense that it takes a long time to improve as well and it is this area that I don’t think we give sufficient time to.  We are even more vulnerable after a CT and I believe we cannot think straight or make wise decisions at this time due to our intense suffering and so we often panic and make a wrong choice.

 

I see others make the same mistake and after only a few weeks of tapering think they are doing okay and taper again and I believe this compounds the worsening of symptoms and you have worse problems.  In the same way after CT and many weeks you think you are okay so you keep going but when it gets severe, by then is often too late to re-instate and you have big problems again.  I had to re-instate back to a full dose and lost all the ground I had made. 

 

In the same way, when I did a switch, I began to deteriorate and when it got worse and worse, I put it down to the new a/d’s.  I was switched to other a/d but again, never gave them the time that was necessary for them to work.  With the knowledge I have gained I have learned it probably wasn’t the new drug causing the problems, but w/d from going right off the Paxil.  Again, I ended up back on a full dose of Paxil, wasting yet another year.

 

So, if I could put all that in a nutshell, it would be to give yourself  LOTS and LOTS  of TIME and while it’s easy to say, try and persevere, suffer long and put up with the crap!  Many a time I said “it couldn’t get any worse” BUT I learned the hard way “it can!”

 

I also believe it is so important to have a reliable friend you see regularly who is sympathetic and understanding because at those times of vulnerability, we need someone who is thinking straight and can keep us on the right path.  Of course, this is also where SA comes in to help and give us the right advice. 

 

I just hope someone else can gain some help and insight from what I have learned!

[Happy2Heal]

thanks so much for sharing that! It will help me as I am going thru my journey and feeling the urge to rush things or make changes too quickly

 

I agree, when we are in a fragile state, it's very hard to think clearly and also to resist the temptation of what is seen as a "quick fix" but never really is

:/

[O2bhappy]

grandmaD -

 

Thank you for sharing the insight that you have learned.  Your comment...

 

 "I would have to say in a nutshell that not being prepared to put up with the agony is one of our biggest issues and the other one is a lack of patience and endurance." 

 

..really hits home.  It is tiring dealing with all the different withdrawal symptoms that are thrown at you.  I find that I can manage for a little while and then I break down.   

 

How do you deal with the lack of patience and endurance? 

[grandmaD]

Thanks guys for the replies and encouragement.  i found it helped me to put my frustrations in writing.  What I need to do is pin it to the fridge to remind myself often!

 

How do I deal with the lack of patience and endurance?  GOOD QUESTION!  You made me think hard, because I certainly still lack it.  For one thing, my husband keeps reminding me about endurance (I know he's right, but I growl at it on the inside!).  Another is my strong determination to get off this drug that I should never have been put on in the first place.  Probably my anger about being put on a poison (it says this on my script, by the way) and on something that interferes with my head/brain.  The other one this past week was my friend who strongly urged me not to go "backwards" by adding another a/d to the mix.  I think having a good friend who understands is the most benefit because they can think straight when you can't.  Reminding me that adding another a/d could make the time to get off it all longer still and so on.

 

Having said that doesn't mean I get free from that desire which is still a daily temptation at present.  I am feeling so discouraged that I am still in a low place after 8 weeks of holding.  I have to admit I did resort to the sleeping pill twice this week which gave me such a nice relief for 2 days/nights but then I always get the xtreme anxiety afterwards and as a result couldn't sleep last night.  It's these after-effects that we easily forget in our desire for a bit of relief.

 

O2Bhappy, I looked at your signature!  Oh how my heart goes out to you, how do you cope?

[grandmaD]

I probably should note that as for my daily list of symptoms, 5 of them have improved and I have noticed that, another 5 have got worse and for the most part I am coping with that.  Just this week my head issues have eased up a lot and that helps.  What gets me down is that I read these people have waves and windows, where I presume a window means feeling pretty near good for a while, however I cannot relate to that.  I find that when one symptom improves, another gets worse and could be in multiples usually so I never feel very good and that is hard to bear.  How I do it, I really don't know when I try and think about it.  I think a lot of the time I have probably learned to put up with it like a person does with a chronic pain - I don't have a life and keep it as simple as possible.

 

What I am struggling with the most since this last crash has been the incredible tiredness, lethargy and fatigue along with very sore, aching muscles and joints.  I have experienced these things sin the past but probably only for a few days at a time with relief in between and then again for a few days on a regular basis.  It is amazing what a few days of relief can bring.  But this has been going on now for 3 months straight.