Jump to content
grandmaD

grandmaD: turtle here

Recommended Posts

LexAnger

So happy that you are getting good days Grandma!

You described it so well when we experience these cycles between bad and good days out of blue and how that tricks our poor brain for a complete perspective of everything!

 

After learned this lesson myself, I try to be just fooled when I in good time feeling all the good feelings, while in bed time I just wait for the good ones coming back.

 

You are doing great and as long as moving in the right direction being closer to zero, you will win eventually and gain your beatify like life back!

 

Hugs,

Lex

Share this post


Link to post
Songbird

About the phenylalanine label - it is possibly a warning because of the ingredient aspartame.  Aspartame (otherwise known as Equal or Nutrasweet) is an artificial sweetener that breaks down into phenylalanine, aspartic acid, methanol and I think a few other things.  There are warnings because people with a condition called phenylketonuria cannot metabolise phenylalanine and so must avoid it. 

 

Phenylalanine is an amino acid, and I think it is possible that taking it could affect neurotransmitter balance as it is a dopamine precursor.  Aspartic acid is another amino acid which can stimulate NMDA receptors like glutamate does.

 

There is some controversy about how safe aspartame is.  Some people consume huge amounts of artificially sweetened drinks every day.  I think it is possible that people whose systems are very sensitive (e.g. those in AD w/d) might have adverse reactions to it.  I always try to avoid artificial sweeteners whenever possible.

Share this post


Link to post
grandmaD

NZ11 and Songbird: Thanks for that info.  I try not to take anything artificial/synthetic and read all the labels, much to the annoyance of family members, so it is good to see other people like myself.  It is especially true of those with sensitised systems I believe.

Lex:  Thanks for dropping by, and I especially note the bit about getting down closer to zero.  Can you believe it, but I do forget it!  I had to get my diagram back out and show it to myself!  It is a mountain and here I am 3/4 of the way to the top, and I keep forgetting that!

 

This week was really bad with those 3 days of blah.  I am actually wondering if I lost a lot of fluid too suddenly with the laxatives, but of course it could also be w/d.  It was the worst week in the last 6 of this drop.

 

Despite the slow, heavy, lethargic, despondency and feeling super tired (5 days all up) when I compared it to the previous drop it was worse (6-7 days)!  So, overall I am much better than I was at that last week 6 drop including having less head vibes and less anxiety.  I was not impressed when head pressure returned again, but again, it wasn't as bad as it was in the previous week 6 drop.  I felt much better when I saw that!

 

the only things that were worse were dizzy, which is neither here nor there,RP,  batcave which was a result of feeling so blah and my hip.  My hip has been really good for ages now and then it played up for 2 days and one night was very painful and I couldn't walk to the loo very well, but today it is good again!

Share this post


Link to post
Songbird

You're doing brilliantly with your taper.  It's so hard when we feel so crappy after every tiny drop, and there are so many drops, but look at the progress we are making, that's what makes it all worthwhile.

Share this post


Link to post
grandmaD

Well I thought I'd put in a bit of an update and am glad to say, yes Songbird, we are making progress - I still just want to be off this poison NOW!  However, I am more patient than I was in the past.  Feeling better helps too. 

I had the best walk around the river that I've had in a long time, with no breathlessness, muscle aching, head throbbing, ribcage pain, etc.  How wonderful to be able to go for a walk an enjoy it!

The good

My ability to do housework is so much better lately.   Before it was such a heavy burden, extremely tiresome and difficult.  It seemed to take forever.  Now I do it quickly and easily and without thinking about it.  I have been doing the vacuuming and mopping again (that hubby was doing).

 

Quiet time – ability to sit and enjoy scenery to some extent has improved,

Pray – ability to focus and concentrate improved from being impossible.  This varies from 5 minutes to 20minutes.

 

I read that book of Claire Weekes and still amazes me that I can read again.  I think for 2-3 years I couldn't. 

 

Overall, I am coping much better these last 3 drops after doing that 6 month hold last year.

 

The bad

Trouble with guts ache and pains and constipation still.  I still don't know if it is the IBS or I am still getting over the gall surgery, but my belly still feels tender all the time.   I'm better if I stick to the IBS diet but constipation got to be the last 2 weeks and I didn't want to take anymore laxatives or suppositories so I had some onions and cheese - and was I sorry because of the wind and belly ache - but it did work!

 

The ugly

The insomnia is always there and for the last 2 or 3 years takes 2 hours to get to sleep and then I wake every 2 hours sometimes after only 1 hour.  When it gets to 4am it is impossible to get back to sleep so I usually get up and have my porridge.  I am thinking of taking my tablet at that time and going back to bed to see if i get back to sleep better...

 

It's been a few weeks since I took the sleeping tablet, so I think tonight is going to be one of those nights.  We really need our sleep so that our bodies can heal better/quicker.

Share this post


Link to post
ladybug

It makes me so happy to hear of your improvements, Gran!

 

Sorry the sleep is still awful. When I initially looked up the tablets you take I thought "Codeine?! That doesn't sound safe to take regularly" but then the more I read about them I learned the amount of codeine is actually quite small and they are sold over the counter. Knowing that they are stricter there than over here (for instance I've heard you can't get Melatonin over there without a prescription whereas here it is OTC) I figure they are probably quite safe. I did read that some people do abuse them, but since the amount of codeine is so small they have to take upwards of 40+ a day. Crazy. Hope they help and you can get a good sleep tonight!

Share this post


Link to post
grandmaD

It sure is nice to see some improvements.  I actually had the best week EVER last week with a good day EVERY DAY and that is the first time in all the years of w/d and the 5-10 years before that when I was trying to get off myself (too fast).

 

Because I was doing so well I decided to drop after 7 weeks.  The last 3 drops have been 8 week ones.  It hit hard yesterday when the head banging, returned full force!  That was a shocker because for the last 3 drops it was less frequent and very mild.  Today I even resorted to an aspirin and had to lie down.  I am feeling more tired too.

 

As for the Mersyndol with the codeine in them, I have been taking them since 1995 when I was on them 4 times a day for the back spasms and did that for about 2 years until I was put on Aropax instead.  I then got 2 headaches regularly every week, sometimes 3 and would take them for them and that was for years.  Then when I started w/d on my own, I took them more frequently and again when I did a slow taper.  It has only been this last year since the headaches abated (which I put down to the Reme'D Capsules) that I take them infrequently now, and I don't believe I have an addiction or problem with them.  Before I got the Doxylamine and then the Serapax I was using the Mersyndol to help me sleep at night once a week as a treat.

 

I meant to to take Serapax the other night and next day realised I had taken a Doxy!  I am sure my head is so much better, but little things like that show me I am still not in my right mind!

Share this post


Link to post
ladybug

Wow!! That is some great news, Gran. Super happy to hear of all your improvements, you definitely deserve it with all you've been going through these past five years. :)

Share this post


Link to post
grandmaD

Thanks babygirl!  I have posted this elsewhere but will copy it for here also:

 

I have tried magnesium several times, first a whole tablet, then half and then quarter.  Next, crushing i1/2 tablet and dissolving it in 1/4 tsp vinegar and then added to 1L water.  I was diluting that by half but still think it was upsetting my guts.  I am trying one more time, this time diluting it even further.

 

I was crook again yesterday after visiting a friend and having a couple of pancakes.  She makes them with spelt flour which I believe I can tolerate, at least better than wheat.  I have had them before but yesterday I ended up with nausea and indigestion and had to take an antacid.  The only difference in these ones was she used cinnamon and nutmeg.  Could these cause gut problems too???

Share this post


Link to post
grandmaD

I thought I'd better continue this subject from Ladybug's journal here about tripping about/visiting etc.  I had decided it was not worth going away again until I was much better, butI want to say thank you Lex, because you have reminded me of some good things that did happen during those trips that were horrendous, symptom-wise.

 

We thought it was the anxiety of going away in the van, having to pack it up, etc, so we went away for a week and hired a cabin, but then you have the problem, that Ladybug talks about - anxiety about a different environment, bed, etc.  At least the van was familiar.  Well, that didn't work, and after 6 days of continual headache, we came home a day early than planned - and as we travelled home, the headache went away!

 

There was another time on another trip with the nausea and all I wanted for tea was spinach.  We used to grow it at home, but on the road, we didn't have any.  That night a man (stranger) knocked on our door and offered us a bunch of spinach!  It is amazing that my memory is really quite bad, but there are things like this I have never forgotten.I know it's a balancing act, but I am not considering going away again, even if I do get worse again.

 

I took the plunge just a month ago and we went away for the first time in ages, but just for 2 nights and stayed with rellies that we get on real good with, who are easy to live with and that was the first time I have gone away and felt almost normal and didn't have a headache for the 2 days - I got it when I got home!

 

Anyway, Lex, you have challenged me to re-think this whole thing, so I am considering going away again in the van for a week.  Of course, the headaches have improved, so that's one good thing that makes that decision easier, but there is still the anxiety, insomnia and now the head vibes and sore heads are back, plus the burning leg pain, but I still think I'll go.  People say we should try and enjoy whatever we can while we can - who knows if we will be here in 3 years time!

 

I do hope and pray I am because my dad gave me money to go for a cruise to New Zealand before he died.  He got a payout because he had cancer from asbestos and sick as he was, he went and I really admire him for that.  he die a month after he got back which was so sad.  He said N.Z. was beautiful and he knew what I went thru with w/d and wanted me to go, but I really would like to wait until I know I can enjoy it - not to mention to be ABLE TO EAT ALL THE NICE FOOD HE SAID THEY HAVE ON THE BOAT!  At the time, I told him i would go the next year (2013) believing I would be OFF THE POISON!  Well, I just got even worse, so I decided it would be in 2014 - not so - more worse!  Surely in 2015 I will go!  Nope!  perhaps in 2016?  No.  This is when it gets depressing, eh?  (I am practising being a New Zealand, eh?)

Share this post


Link to post
grandmaD

The Good

The previous 2 tapers for this year were good compared to before and I coped quite well with them.  I am still alive.

 

The Bad

Week 1 of this drop not so good.  I think I got to used to having good days and it was a shock to the system to feel crap again!  The sore heads, the head vibrations, head banging sensation, lethargy, indigestion, feeling low, all back again, but not every day like before.  I had really hoped they had all gone for good!  Stupid me.

 

The Ugly

Palpitations are practically every day and for several days the prickling/burning sensation on legs and back was horrible and both these then caused worse insomnia. 

Share this post


Link to post
Songbird

All the improvements are an encouraging sign.  It's such a pain when you've been doing well so you drop again and then feel like crap all over again.  Hey, if you come to New Zealand, you can come and visit me, eh?

Share this post


Link to post
grandmaD

You are so right Songbird!  It is weird how by the end of the drop the symptoms have gone down to mild and you forget how bad it gets!

 

Sure Iove to meet you whenever we get to NZ eh!

Share this post


Link to post
grandmaD

(I didn’t post week 2 as I was feeling too down and couldn’t be bothered so here it is now:)

 

The good

Average lately of 2 headaches per week and the good thing is that they are dull, and I don’t need to go to bed.  It has been ages since I had a migraine, which is wonderful.

 

The bad

Less energy, with increase in rapid pulse, breathlessness, feeling low (in my Batcave), more bad days and less good ones and my hip is acting up “icky” but not painful.

 

The ugly

Week 2 saw pressure heads increase slightly.   I notice now when I get these heads, I feel brain dead and go into my batcave.  I have had pressure heads since I started to taper in 2011 just about every day.  The days I didn’t was when I had a migraine or a headache. 

 

What is amazing is that 3 drops ago, they went away for 8 weeks in a row.  This is when I noticed I felt different – alive.  It made me realise I had lived with a dull head for so long, I got used to it and I forgot what it was to be normal.

 

Insomnia for 3 nights waking at 5am, then 4am and then 3am for a couple of hours.   This is a juggling act, deciding whether to lie there for hours and try and get back to sleep or get up and have a hot milk and go back.  I find if I go back it takes an hour to get back to sleep and if it is close to daybreak, usually impossible.

Share this post


Link to post
grandmaD

Week 3

The good

Only 1 h/a, an improvement in hips and feeling low/despondent, head vibes improved and more good days and less bad.

 

The bad

Worse this week for feeling tired and slow, head banging sensation (it also went away for 8 weeks in a row a few tapers ago), sore heads and batcave.

 

The ugly

Week 3 saw pressure heads level out at 4 a week.  Very bad week for palpitations, rapid pulse, breathlessness, 5 nights of insomnia along with the “prickles” sensation coming each afternoon, early evening and at bedtime which drove me crazy. 

 

As a result of the prickles sensation,I resorted to ¼ Serapax at 2.30am thinking it would calm the nerves/prickles and help me sleep, which it did for 6 hours and I took another 1/4 that following night  but woke again at 2.30am and decided not to take any more.

Share this post


Link to post
LexAnger

Hi grandma,

 

Good summary!

I found similar patterns each round of cutting dose, and interpret the change of symptoms later after drop as due for another drop. Usually each new cut starts another cycle, so like dancing between the two evils.

Share this post


Link to post
grandmaD

Yes, Lex, it's crazy really.  How many people would bash themselves in the head and give themselves brain damage, take 8 weeks to recover and then do it all over again!!!  But that's what I do! 

Share this post


Link to post
grandmaD

WEEK 4

 

The good

The severe prickle sensation eased off in frequency and intensity, a great relief.

 

The bad

Pressure heads were slightly better, but more often than not, so still a problem.  These always seem to come with no energy - feeling weak, heavy, slow, low and lethargic.

Head vibes at times were worse in frequency but not there all day like I used to get.

Head banging/jolts worse in frequency but mild enough to cope with.

 

The ugly

Insomnia was still a problem for 4 nights for 2 and 3 hours;

For 3 full days days I had difficulty breathing and couldn’t catch my breath.  It is such a horrible feeling, not being able to take a deep breath.  Pulse was up to the 100’s for 4 days with anxiety and palpitations every day causing me to feel stressed out no end.

 

Overall

The worst week so far this taper, but that is probably normal for me, as week 2 was worse, week 3 worser and week 4 worserer which is how I seem to go.  Next week should even out or at best, begin to improve.

Share this post


Link to post
ladybug

Sorry to hear about the increase in symptoms, Gran. :( Are you trying to drop every month now? At least your drops have a pattern! My drops used to have a definite pattern too, but the lower I get the more random it isThe only definitive pattern I have now is related to my cycle. Wonky hormones make this whole process that much crappier. I hope your pattern holds true and you see lots of improvements this week. XX

Share this post


Link to post
grandmaD

Hi ladybug, thanks for dropping by.  No I am not dropping every month!  Every 2 months.  The signature is not looking accurate because the first one was Dec/Jan and next was Jan/Feb and then Mar/Apr (that was a 7 week one, not 8 weeks because I felt good at week 6).  I am happy to say that my pattern looks like it has returned because I had a better week this week, but it was wonky for ages before I did that 6 month hold and just went down, down, down.  I hope Songbird can be strong and hold out a bit longer and hope that it does improve, but I know it took me that 6 month hold before I improved.  You know, we really are a lot stronger than we realise we are.  I just have no idea how we have done this for so long.

Share this post


Link to post
grandmaD

The good

This week saw improvement in many areas, including pressure heads!

One bad night of insomnia for 4 hours and 1 day of waking too early and not getting back to sleep.

Better week for head banging, feeling tired, head vibrations, anxiety and palpitations.

No migraines, sore heads and no pressure heads!

Improvement with no real bad days and one good day.

Prickles continue to improve but itching was worse, but is tolerable.

 

The bad

Still daily are breathlessness and rapid pulse.

 

The ugly

Lots of problems with GI issues that may be a result of lemon balm I have been taking for insomnia/anxiety.  I also think the psyllium husks (for constipation) cause stomach ache/cramps.

Share this post


Link to post
grandmaD

You got me to wondering if I had my dates right, so as I woke at 5.30 again this morning and lie there for an hour I got up and had breaky and checked them.   Not an easy task, since I coudn't find them in the drawer!  GRRRRRR!!  I went through the drawer 3 times, searched my desk and couldn't figure out where they had got to.  I only had them all out yesterday doing that weekly update!  This is just one example of what happens A LOT with my short term memory.

 

We were thinking about going away at the end of the week for a "trial" to see how I cope with a week away.  We have never been away without me having a headache every day until last March when we stayed with rellies for 2 days and it was the first time in 10 years I felt good and was able to enjoy it. 

 

Anyway, off the track a bit, but what I had done was to put all the stuff for updates in a bag to take with me so I didn't forget it!  Of course, I forgot I'd done that.

Anyway, then I had to find the info that changes the amount I'm on - because I go by the weight and I know that, but don't always know the active ingredient weight.

 

Anyway, this is more exact and I will look at the signature later and see if I need to adjust it.  I think it got confusing because the 3.9mg drop started in Dec.

The previous one 4.0 drop started in Oct 2015 and then before that was 4.1mg from May to Oct 2015.

 

Oh boy, what a hassle!  I then lost what I posted (but so glad grandma has learnt to copy everything now!) and then I couldn’t get back onto SA and has taken an hour plus hubby is up and closed it all down and started from scratch… and got it up again, so here goes again..

Share this post


Link to post
grandmaD

Overall

A better week, with a surprise visitor from days long ago who called in out of the blue which was nice, but too long a visit and I didn’t cope.  Besides the breathlessness I had mild anxiety, etc and ended up with a h/a.  It is times like this that make me so frustrated and angry when I cannot do something normal. 

 

I have definitely improved in that area from half hour visits to 1 hour and now I can even push it to 2 hours sometimes, but 4 hours was just way too much.  I have been trying not to take anything for the anxiety, but because of the bad h/a I took 2 Mercyndol.  For the first time in years, I didn’t have a dull head next day, but felt like I had a decent sleep, which was SO NICE and then for all the next day I was dopey/relaxed which was A NICE RELIEF from feeling stressed out all the time!

 

If only there was something to take like that ALL THE TIME that is safe to take on a daily basis!

Share this post


Link to post
ladybug

Oh Gran, I know that frustration all too well. But so glad to hear you are even seeing improvements in that area. How great it will be when you can do 4 hour visits without any issues. I wonder what it is about the visits that ramps up your nervous system. I remember when I started being social again after that first bad patch I couldn't sleep at all afterward. After I began doing it more it slowly improved, as if my system was able to get used to it. I hope it's the same for you.

 

So glad to hear you got a decent sleep! I really hope your sleep begins to improve soon. I definitely agree with what you said in my thread, that you would be able to cope better. Just like headaches, poor sleep just really affects your whole day in a negative way. This year I feel like I've gotten a taste of stuff you've been dealing with for years and I'm just in awe. Not to mention the other stuff you've been dealing with like high anxiety and racing heart. I just hate that you have to go through any of this. It's not fair what these drugs do. Your strength and resolve really do inspire me. Keep on kicking butt, Gran!

Share this post


Link to post
grandmaD

Thanks babygirl, okay, this sword yielding butt kicking turtle is plodding along, one step at a time!  I didn't cope last night, when I was awake for 3-4hours. This was due to the rotten prickling sensation all over that is like torture. I got angry and so that ramped up the anxiety and palpitations so I got up at 1am and had some porridge and ended up taking 1 codeine tablet to see if helped, but after 2+hours I was still awake and should have taken the 2 tablets.  It is not just the physical symptoms you have to battle but the emotional, of being angry, annoyed and next day I am irritable and cranky not to mention being tired, slow and so on!

 

I forgot to mention something you mentioned on your thread about being despondent.  I have come to realise that other  mental issues I struggle with regularly are despondency, discouragement (which usually comes first thing in the morning when I sense one of my symptoms still being there), despair, disappointment and so on.  I started actually "refusing" to entertain any of them (thanks to Mama Joyce Meyer!) and I did think it helped (for a while anyway!)  But then there are times it seems nothing helps!  Then I begin to question whether I was just better those days or whether it did help!

 

I don't know what it is about the visits that would cause anxiety, there is no reason I should be.  I have started to visit another friend I had "dropped" during the past 4.5years, just on a monthly basis for 2 hours.  If I'm not too bad, I look forward to it and cope reasonably well, but I do notice that after about an hour, I want to go, I have had enough.  Last month I thought I wouldn't go any more, but I feel a bit different this month and will go again tomorrow.  It means a trip to the "big smoke" and that shouldn't cause stress, because I'm just sitting in the car for the hours drive there and back.  Like you, I seem to cop the anxiety that night with worsened insomnia or the next day.  Like you, I hate the fact this poison dictates my life to me!  It is such a juggling match.

Share this post


Link to post
LexAnger

Hi Grandma,

 

I haven't been posting for a while although I still check on my followees, just felt so demoted/sedated to do anything including posting.

As bad as things go with all of us, I'm glad you made a few drops in the year, faster than the last couple years which I want to congratulate you for the achievement. I now in full acceptance that regardless what we do and how slow we reduce, suffer. Is unavoidable so just keep reducing the damn poison. Eventually we will be free of the evil power.

 

You are in my thoughts everyday and having you on the road as a company gives me strength and comfort.

 

Hugs!

Lex

Share this post


Link to post
grandmaD

LA your right there - there will always be suffering involved.  I think I gave up the idea ages ago that by going slower I would have a better quality of life.  In fact, despite going so slow, each year just got worse and worse.  For the first four years I felt like I was drowning pretty much most of the time and for the last year at least I feel like I am treading water and keeping my head above water (mostly)!

 

Still struggling to find relief from the anxiety which causes insomnia, breathlessness, and rapid pulse, GI aches and pains, chest ache/pain and body and head vibrations.  I really don’t think the Serapax or the Doxy is the answer as I wake with a dull head from both the next day and then anxiety seems to ramp up high again fairly quickly.

 

In an effort to find something more natural to deal with the anxiety I have gone back to the lemon balm.  I think it helped with the palpitations which usually start thumping the minute I relax in bed and try and go to sleep.  Also the ones that come thumping first thing in the morning when I wake up, occurred just once and that was it, so definitely fewer.

 

However, the lemon balm (I think) ramped up the bellyache and chest ache and pains and I remembered that it did that to me before.  I finally got the idea to google it and discovered it can cause heartburn, etc, despite the fact it is good for stomach problems!  I found a suggestion to take peppermint and/or licorice with it, so I will try that out.  I also thought about having it with food to see if that helps.

Share this post


Link to post
grandmaD

Week 6

The Good

Many symptoms similar to last week with some slightly worse and some slightly improved.

2 good days

No sore heads, head vibes or migraines and only 2 dull headaches.

 

The bad

Stomach issues were bad with aching, pain, cramping.  I began to think it was the lemon balm so stopped that briefly.  I do think the lemon balm helps with palpitations.  I wasn't any better so began to think it might be the psyllium husks and think that they gave my stomach aches in the past.  They certainly help with constipation so if I stop it I'll have to increase other fibre.

Aching around ribcage and around to back ribs on right side every day was frustrating.

 

The ugly

Daily aching around ribs was a pain along with daily breathlessness.

3 nights of insomnia for 3-4 hours (but this better than weeks 3 and 4).

 

Overall, symptoms are panning out.

Share this post


Link to post
grandmaD

Week 7

 

The Good

More improvement in evergy level and guts aches.

No migraines, only 2 brief dull headaches, with no real bad days and 3 good days.

Insomnia, pressure heads and headaches the same.

 

The Bad

A few symptoms slightly worse, including anxiety, palpitations, head vibes and sore heads.

 

The Ugly

The breathlessness is a pain.  I have a new exercise to try.  You hold your breath for the count of 10 and breathe out and then breathe in for count of 3 and out for count of 3 doing this 10 times and then repeat.  Supposed to help slow down breathing and slow down pulse.

 

Overall

 Some slight improvements and some slightly worse, but overall slightly improved, but not good enough to taper.  Usually week 7 is much better than this so no tapering yet.

Share this post


Link to post
grandmaD

Week 8

 

The good

Good improvements for pressure heads and headaches (same as starting taper)

 

The bad

Rapid pulse was worse than last week and worse than start of taper, but not as high as weeks 3 & 4.

Insomnia 4 nights for 1-4 hours, but was worse in week 2.

Prickles were back, high in frequency but not as bad as intensity as in weeks 1 & 5

 

The ugly

Breathless worst for entire drop in frequency (every day). The new exercise hasn't helped much obviously.

Anxiety was worse for entire drop

 

Overall

A few minor improvements and many symptoms the same.  A lot of symptoms worse with breathlessness and anxiety being worst in week 8. 

 

I normally taper now.  I have many symptoms that are as good as or better than when I started the taper, such as pressure heads, headaches, head banging sensation, energy level, palpitations, vibrations, indigestion, prickles, sore heads, head vibrations and no bad days and 4 good days.

 

Based on that, I think I could drop, but I am concerned about the anxiety and the breathlessness.  So I compared these week 8 results with the previous week 8 results and found that anxiety was much the same, but this result for breathlessness is worse and in fact the worst since I started slow tapering in 2011.

 

I decided that since a large majority of symptoms have improved since I started this taper and it is really only the breathlessness that is a big issue, I feel confident about tapering.  I will just have to see how I go next taper. 

Share this post


Link to post
LexAnger

Hi GrandmaD,

You are in my thoughts and prayer!

Fingers crossed for a milder cycle of a new cut!

 

Big hugs,

Lex

Share this post


Link to post
grandmaD

Thanks LA!  All prayers and thoughts much appreciated (and needed!) esp. for a milder taper this time round!  How are you doing?

Share this post


Link to post
LexAnger

Not too great as expected but staying strong and living this life I got.

 

I just watched a documentary movie called ' prescription thug' on Netflix. Wow, such a great documentary revealing the darkest crimes behind the biggest epidemics! It's something every single person should watch for life protection. then I found it on YouTube and tried to share it here on the forum, but everyone of those on YouTube was disabled for play/share. It must be the government trying to recent people from knowing.

 

I will try to see if any other ways I can share it with as many ppl as possible.

 

Did you make the cut? How are you today?

Share this post


Link to post
grandmaD

Sorry you are still not good, but I guess we do get used to it after a while and it becomes the new normal, doesn't it?

 

I normally taper now.  I have many symptoms that are as good as or better than when I started the taper, such as pressure heads, headaches, head banging sensation, energy level, palpitations, vibrations, indigestion, prickles, sore heads, head vibrations and no bad days and 4 good days.

 

Based on that, I think I could drop, but I am concerned about the anxiety and the breathlessness.  So I compared these week 8 results with the previous week 8 results and found that anxiety was much the same but this result for breathlessness is worse and in fact the worse since I started slow tapering in 2011.  I decided that since a large majority of symptoms have improved since I started this taper and it is really only the breathlessness that is a big issue, I feel confident about tapering, so I will.

Share this post


Link to post
LexAnger

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

 

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

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

 

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

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×

Important Information

By using this site, you agree to our Terms of Use.