17 years and fed up

[GrandmaD]

I joined pp in June 2011 after crashing at 7.0mg
I am now back to 7.0mg after a year!

I have worked out this will take another 5 years. I can't think about that long going on the same way.

I think I will have 1 more go at a 5% taper and for the following year will try a 2.5%.

I just wish I cold get some feedback from some people to confirm that it will be easier and that I can taper every 6 weeks instead of every 12 weeks???

ANyone???

[pkj]

Grandma, I haven't been around pp much lately but just checking in to see how people are doing.

I'm sad to see you are still struggling with the headaches. Mine were terrible, day after day when I was between 7mg and 4mg. Days in bed, throwing up and too weak to sit up almost. Once I got below 4mg things started to get better. I wish I could come and give you a big old hug because it's so demoralizing to go through all this junk for so long. I really hope you soon come out into a better place. I can't imagine being on the road and going through all of that. Your'e one tough cookie!

Anyway, here's a ((hug)) for what it's worth.

Thinking of you,

Polly

[GrandmaD]

Thanks for the hug polly. It is so demoralising when you get headaches so much. They really do get to me and I feel like there is no way out.

But then, like yesterday and today, I have had 2 good days in a row, and I have forgotten the headaches and feel like I can do it, after all!

I went for a swim today in a heated pool. I had stopped swimming as it was making me worse, with muscle cramps and headaches, etc.

Today, I could tell I had some muscle soreness and I tried to use arms and legs, but not strengthless as in the past, so I might be able to start swimming again on a regular basis when we get home (going home tomorrow).

[GrandmaD]

Originally Posted by pkj

I can't imagine being on the road and going through all of that. Your'e one tough cookie!
Polly

Well, initaially, I was a bit sorry! We started out when I was 4 or 5 weeks into the taper, thinking I would soon improve. We saw some beautiful scenery, I knew it was beautiful, but it was like i was seeing in from inside a cave and not enjoying it properly.

I decided to enjoy whatever level I coud, because I was inspired by my dad who, as you know died recently and he knew he was and yet still went for a trip to NZ.

The other reason I chose to go, was because we did a trip in 2010 which was awful (that was when I was tapering by skipping days, not knowing any other way). When I found pp hubby decided not to go away in 2011 so that I could get better first.

I was hoping I might get off in 12 months and had not told him it could take 6 years! I could tell I wasn't getting off in 12 months, so I decided we would go anyway.

It was after 1weeks 10 and 11 into taper I started to come good and I had some good days and I had 1 VERY GOOD DAY and went for a very long walk and survived and both of us were absolutely stunnedd!

Now I have dropped again, so I guess it is understandable symptoms flare up again, but I am encouraged that I have just had a good couple of days early on.

[GrandmaD]

Originally Posted by pkj

Once I got below 4mg things started to get better.
Polly

Wow! That sounds good to me! I keep thinking that SURELY there must come a point where the med is not working any more, being such a low dose and that the body/brain can start to heal more quickly.

[GrandmaD]

Polly, how long were you on paxil for?

Is this a 5% drop you are doing?

Are you dropping every 2 weeks now?

[GrandmaD]

Originally Posted by pkj

I can't imagine being on the road and going through all of that. Your'e one tough cookie!
Polly

Well, when I thought about us going, I remembered that I was so fed up hre at home with all the pressure heads and I thought a change of scenery might help. I was already 4 r 5 weeks into taper and thought I wuld soon improve, but it was another 4 or 5 weeks before I did.

I recall the first place we went to and did a round trip drive along the river. I remember thinking it looked beautiufl, but knew I wasn't appreciating it 100%. Just the same, I was glad to be sitting i the car driving around, rather than sitting at home, where I couldn't do anything anyway!

After 10 weeks I began to enjoy things more and then after 11 weeks dropped again, and we headed home.

[GrandmaD]

Well, at then end of our trip I had 4 GOOD DAYS IN A ROW! That was good, because I was able to help unpack the van (amazing, how much stuff you can get in a van!) and do a load of washing and of course could not visit my garden without pulling out some weeds.

Next day, I was good again - THIS IS MIRACULOUS - esp. after weeding to have no aches and pains, so I helped hubby wash the van.

Next day! Bingo! Aching all over and a big headache that has lasted 2 days and today the headache is just a dull head...

I have to learn to take it easy on the good days but I am still glad to see some improvement.

[GrandmaD]

Oh boy, not good today. Pressure head is back as is feeling, low, heavy, slow and weak. Still achey all over (I presume from washing the van) And those thistles in my garden....... aaaagghhh......I wish I had a gardener! I just want to get out and play in my garden.

I have realised that the "batcave" comes with pressure heads, along with all the above. I am starting to be able to sort out symptoms a bit more now, as they aren't all at once all day every day, so I guess that is something!

[GrandmaD]

Yesterday I wound down and down and head was bad. I had my usual rest after lunch and I think I went to sleep. After that I came good and by tea time felt much better. It is unusaual for me to experience feeling good and bad in the one day.

Still takes me 2 hours to get to sleep and then waking every 2-3 hours. Last night I only woke once but was awake from 2 - 4am. The vibrations were worse, that real strong vibe that goes thru the whole body (does anyone know if that is the body "craving" for the drug???) and my legs were aching bad.

Woke again with the pressure head which I still have. Maybe it will go away again this arvo ...

[GrandmaD]

Woke with pressure head again today. Yesterday it went away after my arvo rest. This is improvement. Even if I have half days without them, that is good.

I was walking this am and thinking (I realised I am thinking a lot more now, and think that has to do with coming out of the "batvave")

Because I was struggling to walk in our area (it is hilly) and I remembered during our travels recently I didn't have trouble walking because it was flat ground, but here is making head pressure worse and breathlessness worse.

ANyway, I have to slow down gong uphill. So I realised I can go faster downhill. That relates to taper - just slow down like going uphill when it is bad. When good, go faster. I don't grumble and complain when I am walking, so no grumbling during taper! Eventually get back home every day from walking, so eventually get home - to the top of this tapering mountain one day.

[GrandmaD]

Originally Posted by eileen

I found a compounding pharmacy the last yr so was able to cut it by .5mg every four weeks the last 10mg that I was on. It was uncomfortable and I had symptoms but I did it and have recovered.

Poop out means that you are having withdrawal symptoms even while you are still on the drug. I used to get muscle spasms in my legs and feet and before I found this wonderful site had a muscle spasm in my back that just wouldn't leave until I went to see my doctor. I had three of these immobilizing back muscle spasms before I was totatly off. I mean I had to stay in bed for a couple of days and take muscle relaxers, don't know if I would do that now. The three of them were when I was on a high dose.

I had head pain and joint pain in withdrawal but it was worth it to get off Paxil.
Eileen

As I am coming up to 12 months of tapering this time, I have decided to go back and re-read my journal.

I like what this person posted and want to read it again..

I can say that the last time I had muscle spasms in back/hip/legs was back in October 2011. Since then had "icky" sensation like it will spasm, but didn't.

Still trying to get my head around what poop out is.

[GrandmaD]

I am indebted to TryingtogetWell for her vital input regarding weighing tablets and help with understanding that the weight of the tablet is not the same as the actual active ingredient weight. I consider myself extremely fortunate to have her wisdom and help as I started tapering.

[Timinjapan]

Hi, Grandma,

I just want to say I admire your courage and fortitude. As someone who is putting up with less than a twentieth of what you are having to deal with, I find you an absolute inspiration. When I feel myself wanting to grumble about head buzzing or stiff muscles, I'll try to bear your example in mind.

As for tapering, I've decided not only to taper off Paxil, but also to taper off some of the bad habits that helped get me to the stage when I started taking the med in the first place. So, less grumbling and griping, less obsession with all the things in life that I thing aren't perfect, less worrying and less thinking about me, me, me. me, me.

Keep tapering at a slow and comfortable-as-possible pace, and I hope and pray your body and brain will produce less and less of these disconcerting experiences as time goes by.

[GrandmaD]

Originally Posted by GrandmaD

I have noticed that dry eyes is a symptom of aropax. For years I had to use eye drops. Dry mouth is another one and dry in other places...

Now, I have a question: If aropax causes dryness in various places, could it be the cause of osteo-arthritis? I was diagnosed with this in my 40's and was amazed because as kid and an adult I drank gallons of milk - in fact, my husband just can't believe how much I drink! I would have to say I got plenty of calcium.

I am thinking this because it says that my bones are dessicated and to me, desssicated coconut is dried coconut ie dried bones!

Even at school, in my day, you got a little bottle at morning tea time. Some kids didnd't drink theirs, so I would have 2!

This is a post from when i first joined. Now, 12 months later, I don't have dry eyes problems. Nor do I have dry mouth - in fact, I can feel the saliva pouring into my mouth! It is rather odd sensation. I swallow it, but then more pours in and I don't know whether to keep this swallowing thing up or just let it build up and then swallow it! Perhaps after a while I will get used to it and do it automatically.

[GrandmaD]

Originally Posted by GrandmaD

Does anyone else experience vibrations going through their body? I really can't be sure this is aropax. I always put that down to my crook back also,however scans say there is no neural compromise in the discs, even though several are slipped (prodtruding) and some are broken and spilling out (can't remember the right terminology).

I have had this for 17 years and at times it is severe and other times it is mild, but never gone away. At its worse it is like someone with a jack-hammer in there. It is quite annoying, but not painful.

This post is from June 2010 when I first joined. I am now beginning to believe the vibes are from the aropax. They are still there, but nowhere near as intens (like a jack hammer back then). Now they fluctuate from mild to modrate every day and some days go high/strong. All these things I put down to my back... may not be ... I do still have tingling every day, though in my legs and burning feet and ankles. My legs ache and I am thinking that is because the tinglingand vibes is not so bad so I am noticing the aching more.

[GrandmaD]

Originally Posted by GrandmaD

Do others experience ringing in the ears. I have had this for a long, long time now and suspect it may be from aropax also. If so, does it go away after withdrawal is over?

I still have the ringin in my ears. I can cope okay with that because for a long time it went up to 3 higher levels of sound, like a siren. Sometimes it goes back up to 1 higher level but it is not every day like it was a year ago.

[GrandmaD]

Originally Posted by GrandmaD

Does anyone experience feeling very heavy, walk very slow, find it difficult to walk uphill (even a very, very, slight incline). I have trouble walking 10mins now. Is this a result of tapering too quickly? If so, will that improve after I start my 5% taper?

ANother post from 12 months ago.

I m still struggling with hills but can walk more than 10mins now- at least 20mins and often 30mins depending how I am that day. I am not heavy and slow every day any more. I have noticed the heavyness and slowness comes with the pressure heads and breathlessness.

[GrandmaD]

Originally Posted by TryingtoGetWell

So many of these sound like withdrawal symptoms and/or medication side effects and if that's the case, they'll get better as you recover (taper and subsequent healing), but some will go away sooner than others. We don't know why some symptoms heal faster than others, but it's the way it is with most of us, so don't worry when some get better and the others persist. When that happens, you need to be patient and give those stubborn symptoms more time.

Some of the great advice from this precious lady a year ago! I need to read it again.

[GrandmaD]

Originally Posted by TryingtoGetWell

The problem seems to be that after a certain point in time, the med has pushed the body as far as it can go so one stops getting the desired effects.

But the body has still been altered and until that heals, which it does by tapering off and then there is still varying amounts of time of continue healing (recovery)... until that healing happens, the body is not back to normal and therefore feels the effect of not getting the dose it's accustomed to.

Withdrawal from psychotropic meds is not like most withdrawal from street drugs or alcohol. It's about healing the changes made in the nervous system, which affects the functions of the entire body.

More good advice from TTGW. I still grapple with the poop out thing!
Intresting that these drugs are different to street drugs in this respect.

[GrandmaD]

Originally Posted by TryingtoGetWell

The nervous system produces its own chemicals that enable the body to do all it needs to do, but in w/d it gets out of balance and may produce way too much or way too little (and that can change frequently and suddenly as it tries to regain its normal balance). That can feel very disturbing, but usually it's the body working hard on healing, or just overreacting because it's over-sensitive.

Tapering more slowly reduces that for most people, but when we tapered too fast (and/or alternating days/doses) the nervous system needs time to heal and these surges of cortisol and adrenaline and things, alternating with tremendous fatigue and weakness, can happen for a while. Once we recognize them we learn to wait them out.

Muscle spasms and weakness are not universal but are very common in w/d.

I am now beginning to grasp the fact that my nervous system needs to heal! I am enjoying reading these posts again. I think back then I was not able to completely grasp/understand it all because of my brain condition.

This is a good exercise to see where I have improved and that I am thinking more clearly now (on my good days, that is!)

[GrandmaD]

Originally Posted by GrandmaD

From my notes it would appear that the headaches did improve as I dropped the dose.
From 18-17mg(this is by scale weight, remember, so half a tablet) average of
6 headaches per week
From 17-16mg: average 5.4 headaches per week
From 16-15mg: average 3.7 headaches per week
From 15-14mg: average 5.2 headaches per week
From 14-14mg: average 4.5 headaches per week
From 14-14mg: average 4.4 headaches per week

Slow going, but I guess they are improving!

This post June 2011. Average headaches per week is now 2-3

[GrandmaD]

Originally Posted by TryingtoGetWell

y different.
Since you've had various medications and different doses (as many of us did, not realizing the effect that can have), you might need a while of staying at the dose you're now starting your taper from (the 9 mg.). That's okay! You're needing to stabilize from years of medication chaos, and you're not the only person here who has!

There's no guarantee of being symptom-free during the healing process you're starting to go through. But the med was causing you a lot of problems, and the idea is to get off it and heal while minimizing the symptoms as much as possible.

Given how long your body has been put through huge fluctuations in daily dose and other med changes, you're doing amazingly well (whether it feels like it or not!). So I think you're made of strong stuff and you're going to amaze us in healing. But don't let bad days get you down. Your body is trying to regain normal balance, and that can cause a lot of ups and downs for some time.

More good advice

[GrandmaD]

Originally Posted by GrandmaD

I forgot to add I have a pain under L breast and the whole chest area (across the top of chest) is sore and achey.

Also the thumping heart, breathlessness and buzzy head and electrical imulse through body.

From July 2011
I think the thumping heart is palpitations which I still get from time to time, the buzzy head I still hve but tha is nothing compared to everything else. The electrical impulse thru body still have, but sometimes is mild to moderate to hi and not hi all day every day anymore.

[GrandmaD]

Originally Posted by GrandmaD

List of all symptoms that go from mild to severe:
buzzy head; sore head; funny head; pressure head; tension head; ringing in ears; body vibrations; backache; legs ache; hips ache; left upper arm hurt; shoulder pain; achey all over; sore chest; achey chest; pain in chest; chest pains; tight chest; breathlessness; palpitations; hot flushes; shakey; feeling low; lethargic; slow; heavy; tired; weak; loss of appetite; idigestion;naseaus insomnia; fed up; no desire; everything too hard; teary; bloodshot eyes.

From July 2011
The things that have improved: tension heads, backache, hips ache, left upper arm (now have sore r. shoulder), shakey, lethargy, being fed up, teary.