☼ Hello. mammaP checking in!

[mattinsmom]

Honestly, the next time I am a a park I am going to waddle right up to a goose and say boo - just to see what happens!

 

I hope that things are settling down for you with your pain. Its about 9:00pm here so I am just getting my energy. I have never painted a wall during the night tho. Daytime, God only knows what my family will come home to, but not at night. 

 

My fingers are crossed that sleep stops by for a long visit. You could use it I think.

[btdt]

i hope you napping there are times I just give up any semblance of normalcy and sleep whenever I can if I had one hour and could nap you can be sure I would be napping.  Later is soon enough to figure out the sleep pattern.  It has happened many many many times and I no longer get my panties in a knot over it tho it is drag to have to cancel things cause of lack of sleep. 

[btdt]

I don't know what the geese are like where  you live but Canadian geese can be aggressive they once chased me when I was trying to feed them lol they got all the bread and did not have to deal with me handing out small bits to them lol maybe that was the master plan... goose are a gamble in my experience you just never know what kind of mood they will be in. 

They say antidepressants are in our water... maybe they were in withdrawal too... it has been affecting fish for years already.

[mattinsmom]

I don't know what the geese are like where  you live but Canadian geese can be aggressive they once chased me when I was trying to feed them lol they got all the bread and did not have to deal with me handing out small bits to them lol maybe that was the master plan... goose are a gamble in my experience you just never know what kind of mood they will be in. 

They say antidepressants are in our water... maybe they were in withdrawal too... it has been affecting fish for years already.

Maybe they were in withdrawal too - omg, thank you for the laugh!

[Meimeiquest]

I'm just catching up on the niacin...I am so sorry I didn't warn you! My husband was on 500mg four times a day at one time, and I accidentally took one. Wy-oh! At the flush point, it makes your body dump its skin supply of histamine, if I remember right. Dr. told my husband to use aspirin as an antidote, but it sounds like the anti-histamine worked. SHOULD you ever wish to try again, use just 100 mg and a slow-release form. Or not . Again, my deepest apologies!

[mammaP]

Thanks Meime but no need to apologise! I haven't tried it since but will be brave one day, lol. 

 

BT and Amy, It is a saying here when someone is so shy they wouldn't say boo to a goose, it 

is a funny old quote when geese can be very aggressive, even our UK geese!  Maybe they are

all on prozac! 

 

 

Are you feeling better today, mammaP?  One hour of sleep, yikes!  That would destroy me.  

 

Gummy snakes are good...although I think I prefer the gummy sharks.  You know the ones, they're blue and white?

Thanks for popping by Narcissus. I am so tired today, I went for my appointment with my therapist yesterday,

then for lunch with my daughter, grandaughter and great grandaughter ( always love it when 4 generations

of us get together.   After only an hours sleep the night before I almost cancelled but managed to go and

it was good but felt really rocky and thought I was going to faint at one point. 

 

As usual I started to come around at about 8-30 , and was sleepy at 2, I  think I would have gone to sleep but 

then the neighbours started fighting and throwing things around  .  It was 3.30 by the time they quietened 

down and then I couldn't sleep! It always has me on edge, and brings back memories I'd rather not revisit.

 

So today I want to cry, and feel like giving up, feel like going to the doctor and asking for sleeping pills. 

Not the answer I know, but I am just so so tired. My leg is really hurting and I haven't had a call back from the

doctor. I can't remember her name so can't call her! She is the radiologist and could be anywhere in several

hospitals. Not that speaking to her would make any difference anyway, this has been going on a long time so 

will wait till I go south next week and go to A&E there! 

 

I need to DO something, so I am going to take a break from the computer today and maybe watch a movie or

make a necklace. The house is a dump, my cleaning lady is sick and hasn't been for 2 weeks.   I need to tidy

up. Or maybe I will just sleep!  Will probably be back later, I  can never keep up my resolve to stay off the computer

for more than a few hours! 

[btdt]

I hope you get some rest Mamma.  

[cymbaltawithdrawal5600]

I hope so too but I am always glad you post so often, I love reading about how you are doing, even if the news is not so good..... you always sound so positive!

[EternalOptimist]

As supportive as it is to be on this site and researching, etc., it is stimulating to be on the computer.

Hope you find that balance MP.

[mammaP]

I had a very lazy day yesterday and was in and out of bed like a salmon jumping up river!

 

Didn't sleep very much but just rested, fell asleep in the afternoon then was woken by the phone.

I was most annoyed because I was sleeping and was woken up after an hour when I could have

slept on but that's the way it goes!  Went to bed at 9pm still feeling yucky  but didn't go to sleep.

Took 3 melatonin too! I've tried half a tablet, 1 tablet, 2 tablets and now 3 tablets and still didn't

get sleepy, so did some light reading, Read 4 chapters of Genesis, fascinating stuff!

 

  Got up again at  11 and had a lemsip, was in pain and had taken tramadol earlier.  That helped

the pain but still didn't sleep until 3 or 4.  Lemsip is the only way I can take paracetamol (tylenol),

probably the anti histamine in it, tablets make me very sick.  Even then I can only take them very

occasionally, not even once a week. 

 

I did feel a lot better this morning, not as agitated but still couldn't bring myself round to doing

anything. It was a beautiful day and the sun was shining so eventually decided I was going for a walk.

Planned my route round the block, which was down a steep hill then along the street, stop off at the

cafe before attempting another, even steeper hill to get back to my street.  A five minute walk for

someone fit and healthy. 

 

Got to the bottom of the hill and was waylaid by a charity shop selling stuff to save the little kitties, 

where I found the perfect little footstool! Bought the cute little stool and manhandled it in a black bin bag,

me with my walking stick in one hand and black bag containing footstool in the other   made it to the cafe

ready to collapse in a heap and have a lovely cuppa. Guess what???

 

IT WAS CLOSED!        So I hobbled up the hill and my back went into spasm half way up 

Finally arrived back home 90 minutes after leaving home, not bad for a 5 minute walk ! 

 

Anyway, sore joints and aching back or not, it was GOOD to go for that walk, I will suffer for it and probably will

not sleep again but I am now laughing out loud at the image of me and my footstool trudging up that hill!

My family will be thinking I've lost the plot when they find out 

[Wolfhound]

Well, you really are courageous!

It seems that you have nice weather across the ocean...Are you able to feel it?

And mammap, talking about akathisia, all meds gave you the akathisia feeling?

[mattinsmom]

You went for a 90-minute walk. That is awesome. It doesn't matter that someone else may be able to do it in less time. You were out and moving your body. Allow yourself the positive credit for that. I was out snow shoeing today and a couple flew right by me. Honestly, my first thought was that I "should" be able to go at the clip they were but you know what? I wasn't. It doesn't matter why because I was out going at my own speed and that was enough to celebrate. I wasn't on my rear watching tv. Who cares if I wasn't fast? So Cheers!!! mommaP for going out today. I think you rocked it. 

[mammaP]

Well, you really are courageous!

It seems that you have nice weather across the ocean...Are you able to feel it?

And mammap, talking about akathisia, all meds gave you the akathisia feeling?

I am not really courageous Wolfhound, I am not in the same state you are in now, YOU are the courageous one!

I honestly can't remember what meds caused the akathesia, there were so many of them.  I remember that

seroxat/paxil was the first and the effect was very quick. I was put on it after about a week in the hospital, after

a period of 'obvservation' . After 2 weeks I went home and things got worse. It was just 4 weeks later that I was 

in a terrible state and sectioned.  I ran away, couldn't keep still, couldn't sleep, ran away again. I was given my

own room because I was so bad. I remember crying and telling the doc that she didn't understand, there were 2

of me and they were fighting inside my body. I couldn't cope with that fighting. I thought it was me and my conscience,

but my conscience was fast disappearing. 

 

There were a lot of drugs after that and they all had side effects but that was the absolute worst of all. 

I was in hospital for 6 weeks that time . It was a hell of a time and I  thought it would never end.

 I started to get better when I was off the drugs, would go home but then would relapse and be back in there, on more,

it was obviously  withdrawal but doctors never believe that! I can see the pattern now I know about drugs and the

side effects of them, plus withdrawal..

 

You are off the drug that caused this terrible thing and will start to get better

for you too..  It will not last forever even though it feels like it will never end.

 

I am with you every step of the way, we all are. Huge mamma hugs for you, you are a  very strong and loving person,

and you will get through this, one day at a time. 

[mammaP]

You went for a 90-minute walk. That is awesome. It doesn't matter that someone else may be able to do it in less time. You were out and moving your body. Allow yourself the positive credit for that. I was out snow shoeing today and a couple flew right by me. Honestly, my first thought was that I "should" be able to go at the clip they were but you know what? I wasn't. It doesn't matter why because I was out going at my own speed and that was enough to celebrate. I wasn't on my rear watching tv. Who cares if I wasn't fast? So Cheers!!! mommaP for going out today. I think you rocked it. 

Thanks Amy, I do feel pleased with myself, I am suffering for it now but what the heck, no pain no gain right 

The house is still a mess, it was either clean the house or go for a walk, I'm glad the walk won 

[Wolfhound]

Walk is always more important than cleaning...

well, you are my hero, truly. Because you had the stamina to carry on the burden. What did help you to put you out from the lowest despair? I mean was it a drug? Or simply time? You wrote me once that during the most terrible years, you were in and out hospital. I admire you so much.

[btdt]

Hi Mamma I had not hear of the lemsip drug so looked it up. 

 

http://www.netdoctor.co.uk/aches-and-pains/medicines/lemsip-max-coldflu-direct.html

 

Lemsip max cold & flu direct lemon sachets contain two active ingredients, paracetamol (1000mg) and phenylephrine hydrochloride (12.2mg).  

 

I am sure you have already.  When I read this a couple of things came to mind one was they did not know how it worked after all these years.  

Paracetamol -  Despite its widespread use for over 100 years, we still don't fully understand how paracetamol works to relieve pain and reduce fever. However, it is now thought that it works by reducing the production of prostaglandins in the brain and spinal cord.

As for taking it with tramadol there is a medication that contains them together. 

Acetaminophen acts by blocking prostaglandins which cause inflammation. ....Acetaminophen is a less potent pain reliever that increases the effects of tramadol.

 

Acetaminophen-tramadol is a combination product used for the short term treatment of acute pain. Acetaminophen acts by blocking prostaglandins which cause inflammation. Tramadol acts via the opioid receptors in the nervous system to block pain... The exact mode of action of tramadol is unknown.

 

Seems to me they don't know much. I think I have an answer to all of this finally how to beat the system... it is time travel... come back in 500 years when they have figured out how these trial and error drugs work. 

 

 I am a bit concerned about what is causing this pain... and wish the people responsible for your health care would give you an answer.  I

[Nikki]

He MamaP....sorry I cannot keep up with all the posts in a timely manner.  Have to catch up with people due to lack of time.

 

Bless your heart for going for that walk.  A friend of mine went to a seminar and the guest speaker is a Neurologist at Hrvard and the University of Jerusalem and he spoke about studies involving walking.  Simple walking on a daily basis to alleviate anxiety, depression and for other things like RA, etc.  Best medicine around.

 

I need to take this advise myself.

[mammaP]

Thanks for checking in Nikki  . The neurologist is absolutely right! Walking is by far the best exercise there is

and it is the thing I miss most of all. I used to walk for miles and when we moved here and had to go 40 miles 

to the shops I started to drive and would park the car outside of town and walk in. Not for me driving to each shop!

I had arthritis as a child but got over it. It left me with a damaged knee joint but I still walked everywhere. 

 

When I started the drugs merry go round I walked and walked, then became physically ill with it all and stopped walking

so often.  Gradually things deteriorated, now arthritis is everywhere.  RA OA AS and now what looks like infections in

the bone. A lot of pain and only able to take tramadol once a day. Side effects are awful so can't take the SR.  I would

love to go for walks again, I live in a beautiful place with the beaches and wooded areas just a short distance away if only

I could walk there! 

 

I would strongly recommend to everyone to walk each day, it keeps the joints supple and well oiled. Walking draws fluid into

the joints, and without it the body becomes like a rusty old engine machine, creaking and clunking! 

 

I am paying dearly for my walk yesterday, in a lot of pain today and didn't sleep at all last night. It was good though and if I

never do it again I'll remember it     

 

 

Walk is always more important than cleaning...

well, you are my hero, truly. Because you had the stamina to carry on the burden. What did help you to put you out from the lowest despair? I mean was it a drug? Or simply time? You wrote me once that during the most terrible years, you were in and out hospital. I admire you so much.

 

I think it was just time Wolfhound, and I am sure the time would have been less if they hadn't kept pushing more meds on to me,

telling me I as very ill and only meds can help   I was very ill but meds were causing it not making it better! 

[btdt]

I did not say it before but it is on my mind hard ... still. 

If you have an infection in the bone is it still a good idea to walk?  I wish those doctors would get back to you. 

[mammaP]

I did not say it before but it is on my mind hard ... still. 

If you have an infection in the bone is it still a good idea to walk?  I wish those doctors would get back to you. 

I wish they would too BT, but this is typical!  I go to my daughters at the weekend and will go to emergency 

if the pain starts to get bad.  Walking aggravates everything. Today my shoulder is really painful from 

leaning on my stick for my walk on Saturday, on top of everything else. 

 I feel bad today and just wish I knew what it is. Withdrawal? Infection? Effexor?   Exhaustion?

Everything rolled into one? 

 

Can't concentrate, weepy and lump in my throat all the time, headache, sinus stuffed up, aches everywhere, 

chills, fever, joint pains, completely exhausted. If a doctor offered me a general anaesthetic to put me to sleep

for a week I'd jump at the chance, but then I reckon we all would!

 

There's so much to do before I go away, I might find a place there and only be back to pack up so need to be 

ready for that  possibility.  All I have to do is say the word and an army of volunteers would be here to do it for 

me but I want to do it for myself. Last time I moved I was in hospital and had no control over the move. I'm still

finding things I thought were gone forever because someone else did the packing. 

I made this decision when I had a brief window, now I'm not sure I can do it, but I need to go to another hospital.

[Nikki]

MamaP are you moving to another house and neighborhood?  I am not sure I understood.

 

Were the doctors able to definitively able to tell you if you do have an infection and what it is.....

 

I have heard that Meditation or mild stretching (yoga) is marvelous for arthritis.  Maybe you can substitute.  It sounds lovely where you live.  I am trying to picture this in my mind.

[mattinsmom]

I am sorry that you are in so much pain. I'm glad you got the walk in though. 

Have you decided to move in with your daughter or is it still just on a burner? I know you were struggling with that. 

 

I wish there was something I could do to help you feel better. Silly questions but have you tried massage or energy work to help with the pain? I've had success with both but I'm biased. 

 

I hope that sleep visits you tonight. The world is an easier place to be in when not exhausted. 

[btdt]

I know that feeling well making a decision in a window and getting hit with second thoughts when the wave comes it keeps me here actually as I need the stability.  

If you feel unable or unsure for now maybe you can just keep the place you have and get the medical help you need using your daughters address for now.  It may be that the care you need can't wait in which case the move goes on the back burner as you can't do everything as in healing what ails you and moving both.  

I find when circumstances push me around I am grumpy for sure but I also tend to do nothing as decisions are hard when you don't know how you will feel when the time comes around. 

I wonder if there is a way to find the name of that last person you talked to maybe she needs a nudge. Shame to have that last visit be wasted as she did not follow up. 

I know what you mean about the symptoms 

"Can't concentrate, weepy and lump in my throat all the time, headache, sinus stuffed up, aches everywhere, 

chills, fever, joint pains, completely exhausted"

I have had all this in withdrawal and I too was often worried if I were sick I would not be able to tell as I was so use to it being withdrawal... 

it is hard to know.  they say get checked anyway but when you feel like that so often doctors start to look funny at you ... I know mine does. 

 

I wonder how many of us let things go... for those two reason

our doctors are tired of us getting checked when it is withdrawal and no longer take us seriously when we are sick or symptoms are not a big deal to them as we often have symptoms and they can't find a cause for... so eventually we are tried of seeing them and being made feel like head cases we stop going when really there are things wrong with us.... seems to be a viscous cycle. 

 

I hope you getting some sleep tonight. If not at night then in naps.. any sleep is good sleep. 

Try not to worry about the move just now and focus on a proper diagnosis just to make sure the leg is ok. 

peace to you mamma I wish you sleep

[mammaP]

Feel much better this morning thank you everyone. Had a couple of hours sleep.

I do think I have sinusitis, suffered badly with it years ago. I had a hot bath last night

and inhaled menthol crystals. Today I can feel the congestion starting to break up, it's

like crackling and bubbling in the sinuses, weird but it's a good sign! 

 

The leg stuff is very complicated Nikki.  12 years ago I had a hip replacement.  It was complicated and

didn't go well but it was done and I had to get on with it!  8 years ago I had an MRI on my knee 

(same leg)  It showed a lesion in the thigh and was told it was cancer. Metastatic cancer in the bone, from either 

my old breast cancer or a new one.  This was 4 MONTHS after the scan!!   All hell broke loose, family

threatened to sue, it was huge! Then without any tests, someone decided it wasn't cancer after all.

A repeat scan showed the lesion was still there but unchanged. It was tiny and could be anything but

no-one wanted to do a biopsy so it was left. 

 

2 1/2 years ago  had a bone scan after I started having severe pain in that thigh. Scan showed what was 

thought to be infection at the BASE of the prosthetic hip. I saw it on screen, it was quite a large 'hot spot' .

They sent me for a scan to check the actual joint, not the base!  I was waiting to go back for a follow up

and the day before that I collapsed at home and was rushed to a different hospital seriously ill with septicaemia. 

I was critically ill with multiple organ failure.  Doctors there could not find the source of that infection. I told them 

repeatedly that it was in my leg but they were convinced it was my tummy, even when their own resident ortho

doctor advised them to move me to the ortho hospital as soon as I was stable enough to be moved.

 

I never received another follow up from ortho and a year ago had to ask my gp refer me again.  The pain had settled

after the sepsis but was starting up again.  A lot of to-ing and fro-ing  since then and my last x rays showed more

lesions that they said indicated infection.  So now I have 3 large lesions in the same thigh bone, all that could 

be infection and what scan did they order???????????? One to check that the JOINT is not loose!  

I've been thinking about moving South for years but had grandkids here who needed me. Now they are all teenagers

and doing great I can go south and be there for my daughter and her 2 little ones, watch them grow up. 

 

The timing is good if it wasn't complicated by withdrawal. They want me to move in with them but I don't think that 

would be a good move so will be looking for my own place. The very best hospital in the UK for this type of thing is

quite close and that is why I am doing it now.  I'm going at the weekend for a few weeks to look around,  I will do that

anyway, it's months since I've seen them and looking forward to that   .

[btdt]

Glad you slept it makes such a difference to have sleep  

Enjoy your trip  

[mattinsmom]

Yes, yay for some sleep. 

 

I happen to agree with you that moving in might not be the best idea but I certainly understand why you are looking around. I wonder what exciting things you will find?!?!?! 

[mammaP]

Much better today, I moved my pillow to the other end of the bed and went to sleep!

Maybe nothing to do with it but thought I would try it, feng shwotsit and all that  .

 

I also decided last night to try an extra bead. I crunched it in my teeth then removed it 

so I only got the slightest bit on my tongue.  And feel so much better today. I only slept

for 2 hours but it was so badly needed and that would have helped a lot but the dizziness

has gone, that feeling that if I move my head too fast it will fly off my shoulders  .

 

I knew that going from 4 beads to 3 was too big a drop but there are no other options right

now.  I have ordered a pill crusher that has a pointed end that sits in a pointed base, so I

can crush a bead and add water to it. The bead shell turns transparent in water but doesn't dissolve 

so can just lift it out with tweezers.  I ordered it in Amazon UK weeks ago and just tracked it to

discover it is coming from the US and has been delayed by weather conditions. I hope it 

arrives before I go away! It took hours of searching to find the right one. The things we do for

our tapering  .    Until then I will crunch a bead to get a teeny amount from it but not the whole

bead. Not accurate or precise either but it's all I have!

[tezza]

Yes, indeed, the things we do for our tapering! I'm sure most of us have spent a small fortune looking for help or relief but at least the drug companies are not getting it.

 

I don't know how you keep going on so little sleep for so long. I'm saying a prayer that tonight will be much better. I feel bad while my sleep is short but it's been a while since I only got two hours. I usually get at least four and that doesn't feel like enough. I do have some better nights, too, though not often.

 

You amaze me, I don't think I could function as well as you.

 

Hugs!

[btdt]

2 hours  counts every little bit counts. 

I was reading some place on here I think in Johns posts about the shell of the pill maybe being part of the time release with beads... that does not help with the slitting a pellet... which is another issue... but was wondering if you read that about the shell... pill casing whatever it is called the word escapes me just now. 

 

I was wondering if your getting it all at once and maybe that is part of the issue... I really don't know as I did not taper.  

 

I know what you mean about those head swooshes aren't they a treat... hate them it is rare that I ever have them now usually only have them when i have a headache glad to see the end of them. 

 

Hope you have a good day today almost time to prepare for you wkend away hope it is a good day for you. 

peace Mamma

[mattinsmom]

Every little bit of sleep mommP, every little bit!

 

Your ingenuity with med tapering is amazing. Wishes from the US that your crusher arrive asap  

[Narcissus]

Praying to the sleep gods for you.

[mammaP]

Thank you all for your contributions, I love it here, we all understand each other  .  No change on the sleep front,

very fragmented with 'naps' rather than sleep but I am coping for now. It's when the sleep goes completely that I am worst.

Even an hour makes a difference. I've been sleeping an hour in the daytime too which helps.  

The bead coating must be part of the slow release and yes it is a rush of the drug. I can't find a way around it but did feel better 

after crushing it then spitting it out, getting just a miniscule amount.  I did that a couple of times and found the rush was too much

and gave me side effects so last night decided to updose back to 4 beads. I was fine at that dose but never stabilised on 3, with

just a very brief couple of windows in 4 months.  I feel better already and hope it stays that way! 

 

I was at 4 beads for about 8 months I think, and was ready to drop but 1 bead was too much. I am going away tomorrow for a few

weeks and will stay put until I get back. Then hopefully my pill crusher will be here, it still hasn't arrived! 

I'm thinking of crushing the 4 beads, making the liquid each day and removing a tiny amount, then splitting the dose into 4 or 6 doses.

That is the plan for now. 

 

I have to sign off for now, need to finish packing and go for a LITTLE walk, no 90 minute marathons, I don't have a week to recover, just

a few hours   . May be in later but if not will be a few days. 

[tezza]

Mamma,

 

If you think the bead coating is is the 'slow release' (that seems logical) and get a rush of the drug from a small amount of one bead, four beads at once, seems to me, would be an even bigger rush. You'd be taking the slow release off all four.

 

I know it wouldn't be easy but I'd try to only crush one bead for the liquid.

 

Have a safe and happy trip!!!

 

HUGS!

[tezza]

Even splitting into four or six doses, you'd still likely be getting a lot more than you did from a small amount of one bead.

[Altostrata]

If the Effexor XR beads are too strong for you, you might want to try making liquid from regular Effexor.

 

Yes, the extended-release is in the coating on each bead.

[mammaP]

Thanks Alto, problem is I can't get regular effexor. I was on them at one time and didn't

do well on them. The doctor switched me to slow release because I was getting too much at once. 

That is down in my records.  My doctor was very annoyed with me because I insisted on tapering

slowly and grudgingly gave me the liquid which I had an allergic reaction to. 

 

I can imagine the scenario trying to explain that I want to make a liquid from tablets  .

I have got an old pack of generic (winfex) venlafaxine, which are slow release capsules that contain

2 tablets.  Do you think it would  be ok to make liquid from those? They are dated 2009 but I'm not 

convinced sell by dates are anything more than a ploy to sell more of everything! 

 

I found an online pharmacy that might carry them without having to go through my doctor but have

never used one of those before so not sure how reliable they are. They cost a fair bit but would

last me a long long time.