back again

[[mr...]]

Hi Polenta,

 

Do u have your 25 hydroxy D levels in the optimum range of 60-80ng/mL?

Also, sometimes fibromyalgia is misdiagnosed when it might be osteomalacia.

http://www.benzobuddies.org/forum/index.php?topic=47920.msg1253215#msg1253215

 

[[po...]]

I don't have fibromyalgia any more, but the last time my Vit D level was tested it was 88 (I make sure to be out in the sun around mid day for 20 minutes every day in the Summer, and I always have done for years now. (I had a bad reaction to 2000iu Vit D3  a few years ago, it took months and months for me to recover, so I never touch any kind of supplement now and have not for many many years)  Have you read this blog:

https://www.blogger.com/comment.g?blogID=12575046&postID=2612696461249365197 it is full of info about Vit D, really useful.

 

[[mr...]]

I don't have fibromyalgia any more, but the last time my Vit D level was tested it was 88 (I make sure to be out in the sun around mid day for 20 minutes every day in the Summer, and I always have done for years now. (I had a bad reaction to 2000iu Vit D3  a few years ago, it took months and months for me to recover, so I never touch any kind of supplement now and have not for many many years)  Have you read this blog:

https://www.blogger.com/comment.g?blogID=12575046&postID=2612696461249365197 it is full of info about Vit D, really useful.

 

That's awesome, Polenta!

I have heard of some people having issues with taking D, but it is probably from the fillers, flow agents or gmo oils.

 

[[Fl...]]

Really glad to hear this. I started having the same reaction to alcohol when I was about 2 years off- up until that point I seemed to tolerate it just fine but then it turned on me and even a small amount started making me sick so I don't doubt that you could have a similar situation with caffeine.

 

Let me know if you post a success story. I want to add it to the Protracted Success Stories sticky thread on the protracted board.

[[je...]]

So glad to hear this!

[[po...]]

Really glad to hear this. I started having the same reaction to alcohol when I was about 2 years off- up until that point I seemed to tolerate it just fine but then it turned on me and even a small amount started making me sick so I don't doubt that you could have a similar situation with caffeine.

 

Let me know if you post a success story. I want to add it to the Protracted Success Stories sticky thread on the protracted board.

Thanks FloridaGuy, I might do that when I am sure it is truly permanent!!!!

[[po...]]

I don't have fibromyalgia any more, but the last time my Vit D level was tested it was 88 (I make sure to be out in the sun around mid day for 20 minutes every day in the Summer, and I always have done for years now. (I had a bad reaction to 2000iu Vit D3  a few years ago, it took months and months for me to recover, so I never touch any kind of supplement now and have not for many many years)  Have you read this blog:

https://www.blogger.com/comment.g?blogID=12575046&postID=2612696461249365197 it is full of info about Vit D, really useful.

 

That's awesome, Polenta!

I have heard of some people having issues with taking D, but it is probably from the fillers, flow agents or gmo oils.

 

No it is the Vitamin D, check that blog out!! That is where I found out the safest way to  tan in the sun as well….

[[mr...]]

I don't have fibromyalgia any more, but the last time my Vit D level was tested it was 88 (I make sure to be out in the sun around mid day for 20 minutes every day in the Summer, and I always have done for years now. (I had a bad reaction to 2000iu Vit D3  a few years ago, it took months and months for me to recover, so I never touch any kind of supplement now and have not for many many years)  Have you read this blog:

https://www.blogger.com/comment.g?blogID=12575046&postID=2612696461249365197 it is full of info about Vit D, really useful.

 

That's awesome, Polenta!

I have heard of some people having issues with taking D, but it is probably from the fillers, flow agents or gmo oils.

 

No it is the Vitamin D, check that blog out!! That is where I found out the safest way to  tan in the sun as well….

Did you ever try vitamin D2?

[[pr...]]

i'm so glad you're tlaking about the vitamin D issue Polenta. you had left when that discussion was getting going on my blog.

[[po...]]

Oh wow! That is awesome, Polenta!

 

Whenever I see 'polenta' on the shelves in shops, I think of you. I saw some the other day and realised how long it had been since I'd seen you write here.

 

I am looking forward to hearing all the details of your recovery.

 

Love from Xana x

 

Hello Xana,

 

I think of you often too, and I don't like to think of you still depressed and in pain.  I don't intend to be on BB for very long, so I will just post this info on Xanax for you to re read.  I know you say you had all you r sx before you took the stuff, but that is no proof that you are not suffering side effects now.  Anyway, I expect this post will anger you, (a lot seems to anger you these days - and  I can remember being like that myself, and it is so blissful when  it stops).  Please remember I am not trying to hurt you, all I want is for you to see what you are doing to yourself and give you a bit of hope that it could all end after a taper off Xanax.  There, I have said it - all hell will break loose now I expect……

 

much love,

 

Polenta

 

PS this has taken up the whole of the 20 minutes I am allowed to be on the computer, so I hope you are grateful(lol), and I have capitalised the 3 side effects that seem to trouble you the most.

 

Being forgetful

changes in patterns and rhythms of speech

clumsiness or unsteadiness

difficulty with coordination

DISCOURAGEMENT

drowsiness

FEELING SAD OR EMPTY

irritability

lack of appetite

lightheadedness

loss of interest or pleasure

relaxed and calm

shakiness and unsteady walk

sleepiness or unusual drowsiness

slurred speech

tiredness

trouble concentrating

trouble in speaking

trouble performing routine tasks

trouble sleeping

unsteadiness, trembling, or other problems with muscle control or coordination

unusual tiredness or weakness

Less common

Abdominal or stomach pain

blurred vision

body aches or pain

burning, crawling, itching, numbness, prickling, "pins and needles, or tingling feelings

changes in behavior

chills

clay-colored stools

confusion about identity, place, and time

cough

dark urine

decrease in frequency of urination

decrease in urine volume

diarrhea

difficult or labored breathing

difficulty in moving

difficulty in passing urine (dribbling)

difficulty with concentration

dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly

dry mouth

ear congestion

environment seems unreal

fainting

fear or nervousness

feeling of unreality

feeling warm

fever

general feeling of discomfort or illness

headache

hyperventilation

inability to move eyes

inability to sit still

increased blinking or spasms of the eyelid

irregular heartbeats

itching

JOINT PAIN

lack or loss of self-control

loss of bladder control

loss of coordination

loss of memory

loss of voice

mood or mental changes

muscle aching or cramping

muscle pain or stiffness

muscle weakness

nasal congestion

nausea

need to keep moving

painful urination

problems with memory

rash

restlessness

runny nose

seeing, hearing, or feeling things that are not there

seizures

sense of detachment from self or body

shaking

shivering

shortness of breath

sneezing

sore throat

sticking out of the tongue

sweating

swollen joints

talkativeness

tightness in the chest

trouble in breathing, speaking, or swallowing

trouble with balance

twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs

uncontrolled twisting movements of the neck, trunk, arms, or legs

unpleasant breath odor

unusual drowsiness, dullness, tiredness, weakness, or feeling of sluggishness

unusual facial expressions

unusually deep sleep

unusually long duration of sleep

vomiting of blood

wheezing

yellow eyes or skin

Rare

Actions that are out of control

attack, assault, or force

chest pain

continuing ringing or buzzing or other unexplained noise in ears

decreased awareness or responsiveness

deep or fast breathing with dizziness

ear pain

false or unusual sense of well-being

fast, irregular, pounding, or racing heartbeat or pulse

feeling jittery

feeling unusually cold

generalized slowing of mental and physical activity

hearing loss

hoarseness

lack of feeling or emotion

loss of control of the legs

loss of strength or energy

nightmares

numbness of the feet, hands, and around mouth

severe sleepiness

shakiness in the legs, arms, hands, or feet

sleep talking

sleeplessness

swelling

talking, feeling, and acting with excitement

thoughts of killing oneself

unable to sleep

uncaring

unusual weak feeling

voice changes

Incidence not known

General tiredness and weakness

light-colored stools

stomach pain, continuing

upper right abdominal pain

decreased appetite

decreased interest in sexual intercourse

decreased sexual performance or desire abnormal ejaculation

difficulty having a bowel movement (stool)

inability to have or keep an erection

increased appetite

increased in sexual ability, desire, drive, or performance

increased interest in sexual intercourse

increased weight

loss in sexual ability, desire, drive, or performance

stopping of menstrual bleeding

watering of mouth

weight loss

 

Abdominal bloating and cramping

blistering, crusting, irritation, itching, or reddening of the skin

change in taste bad unusual or unpleasant (after) taste

cracked, dry, or scaly skin

cramps

double vision

feeling of warmth

heavy bleeding

menstrual changes

pain

pelvic pain

redness of the face, neck, arms, and occasionally, upper chest

seeing double

sudden sweating

unexplained runny nose or sneezing

Acid or sour stomach

belching

bigger, dilated, or enlarged pupils (black part of eye)

change in color vision

difficulty seeing at night

feeling of constant movement of self or surroundings

feeling of relaxation

heartburn

hives or welts

increased sensitivity of eyes to sunlight

indigestion

redness of skin

runny nose

sensation of spinning

stomach discomfort, upset, or pain

stuffy nose

 

Blistering, peeling, or loosening of the skin

red, irritated eyes

red skin lesions, often with a purple center

sores, ulcers, or white spots in the mouth or on the lips

swelling of the breasts or breast soreness in both females and males

unexpected or excess milk flow from breasts

 

[[Ja...]]

Polenta,

 

Did you have alot of nerve pain, or was it mostly fibromyalgia type?

 

Hope you don't mind me asking.

 

              Thank you, Jadetortoise

[[po...]]

I  had short bouts of nerve pain but it was usually more general fibromyalgia, even so, the pain used to make me cry when it came back after a window, until I got used to it again…..

 

 

[[Mt...]]

This is beautiful beyond words!  this is probably one of the happiest bits of news Ive ever read on this website. I'm so happy you are loving and living life--you so deserve it. I wish you the most profound health, wellbeing and happiness any human being could ever have! :) :) :) :)

 

mtnhigh

[[po...]]

thank you so much Mountain!!!!!

 

Here is the email from H Ashton for anyone interested.

 

I was mistaken about the fibro going at that point.

 

From: "C.H.Ashton" <c.h.ashton@ncl.ac.uk>

Date: Fri Jun 01, 2007 

Subject: Re: recovery from benzodiazapine addiction

 

Dear ,

 

  Unfortunately, some people experience protracted withdrawal symptoms from benzodiazepines and these can last for many years.  They do, however, gradually recede, and it is a good sign that at least some of your symptoms have improved and that you have managed to get back your career as an artist.

 

  I cannot guarantee that all your symptoms will disappear but I think that they will continue to improve, even after all this time.  It is good news that your aches and pains ("fibromyalgia") seem almost to have resolved recently.  I think you can look forward to a slow continued improvement, punctuated by (temporary) "bad patches".  Do not lose heart but try to let the bad patches roll over you and look forward to the better times.

 

  It is possible that some psychological help such as cognitive behavioural therapy (CBT) may help you to cope with some of your symptoms if you can find a suitable therapist.

 

  I think that, after all the courage and determination you have shown, you can still expect a good outcome.

 

Yours sincerely,

C.H. Ashton

 

----- Original Message ----- From:

Sent: Wednesday, May 30, 2007 2:24 PM

Subject: recovery from benzodiazapine addiction

 

 

Dear Professor Ashton,

 

I spoke to you briefly many years ago at the conference at Croydon and

you told me never to give up hope.  I do hope you will be able to give

me the same encouragement now.

 

When I was 23 I was first prescribed the earlier benzodiazepines when I

sought help for my mother after years of domestic violence.  I stopped

pretty quickly but experienced what I now know were withdrawal symptoms

and was the put on a steadily escalating mixture of drugs

(anti-depressants, anti-psychotics and tranquillisers including, as soon

as it came on the market, Ativan, which was the one drug that stayed

constant). I steadily deteriorated for the next 27 years until I read

about the side-effects of benzos.  I came off all drugs over 6 weeks and

have been experiencing all the usual symptoms since then.

.

These have been gradually getting less extreme and for the last few

years I have been getting about 3 months of respite.  However, the

long periods when I do have these symptoms, even though they are at

least 20 per cent milder than they used to be, are still  unbearable,

and I am wondering if after 14 years of being drug-free, I can hope for

any further improvement.

 

I have managed to get back to my career as an artist (which ceased when

I started taking drugs), and although I have not been able to start

painting again, I now show my  ----------  in Europe, America and London.

The frustration of only being able to work for 3 months a year is

extreme.

 

I should add that my GP prefers to diagnose me as having "fibromyalgia"

and my refusal to take anti-depressants etc. ensures that I get no

support. I am now 64, have been drug-free for 14 years, and feel that I

do not have the strength to go on much longer. I have been in this, my

latest "bad patch"  some months now, and although the aches and pains

seem almost to have disappeared for the first time, have lost heart. I

am experiencing extreme anxiety, extreme lethargy, extreme exhaustion,

tinnitus,  double incontinence, involuntary movements,extreme sensitivity to sound and light, constant negative thoughts, insommnia, IBS, confusion, catarrh, breathing problems, inability to experience pleasure, depersonalisation, derealisation,

inability to concentrate, periods of very blurred vision, feelings of

hopelessness, bouts of inexplicable hostility and anger, depression.

 

Do you think I will ever recover? I would be very grateful if you could

find time in your busy schedule to let me know.

 

Yours sincerely

 

 

 

--------------------------------------------------------------------------------

 

PS I can't get the format right, editing out my personal details has wrecked it.

 

 

 

 

 

[[Ja...]]

Polenta,

 

Did you have increasing dizziness? Mine has gotte extremely severe the last few weeks. I didn't see you mention this.

 

Thank you for sharing Professor Ashton's email with us.

 

I didn't know you are an artist. That must be so cool.

 

                    Love, Jadetortoise

[Guest [to...]]

Hello Polenta,

 

 

I am enjoying your positive thread    and would like to add another positive note.  I am in Australia, my Dr is the equivalent of Prof. Ashton in Australia.  She is instrumental in the major changes and shift in prescribing guidelines in Australia.For the most Dr's here are all over the dangers of prescribing benzos  outside of emergency situations.  I owe my life to her and her colleges

[[po...]]

Polenta,

 

Did you have increasing dizziness? Mine has gotte extremely severe the last few weeks. I didn't see you mention this.

 

Thank you for sharing Professor Ashton's email with us.

 

I didn't know you are an artist. That must be so cool.

 

                    Love, Jadetortoise

 

I did, I had a positive tilt test and suffered several serious falls over the years, I have had head injuries and lot of facial scars to show for it.  But that has all stopped now.  It was and is so hard to remember everything, even when emailing H Ashton, I didn't remember all my sx.  Maybe there were just too many to remember?

[[po...]]

I hope that I have been able to pass on a bit more helpful info on BB.  I won't be back for a bit, but will update again in the future.

 

very best wishes to all.

[[Li...]]

 

Thank you so much Polenta for you hopeful posts here.  It means a great deal to me tonight to celebrate your healing with you!

 

When the time is right for you, I greatly look forward to hearing more of your journey.  May it be wonderful for you!

 

Love and very best wishes to you, too,

Lily

[[...]]

Hi Polenta

That is really great news! I'm so happy for you

Bart

[[po...]]

Thanks Lily and Bart,

 

I am still feeling good and  I had a Stroke scare a few days ago, I was kept in hospital hooked up to things all night and having zillions of blood tests etc, I was thinking how ironic it would be to croke from a heart attack just when, for the first time for decades and decades I actually cared whether I lived or died! Luckily there is nothing wrong with my heart - the sx are caused by caffeine wd.(chest pain spreading into the arm)  I checked out as completely normal.

 

It is bliss just doing ordinary things like being able to read a newspaper in a relaxed state, or to be able to think without the intrusive thoughts - although I still do have some cognitive issues.

 

Anyway, thank you again for your good wishes

 

:smitten:Polenta

[[Li...]]

 

Polenta,

 

I am so glad that your heart is fine!  It must have been very hard to be in the hospital and have all the tests though.  My thoughts are with you today.

 

It is wonderful to hear you say you can "read a newspaper in a relaxed state, or to be able to think without the intrusive thoughts".  I so look forward to that day.  It is coming - just not here yet!  Thanks again for your posts.

 

Blessings,

Lily

[[we...]]

Polenta, I always believed you and your story was so shocking that you were, in my mind, the poster child of protracted.  It's funny how we impact people without knowing it and as it is you had a strong impact on me although you probably don't know me.

 

I have thought about you a lot in the last three years and I am so grateful that you came back and posted your success story.  You have made my day, heck, let's make that my week.

 

I don't know of any other buddy who can truly say " if I can heal, so can you ".

 

Thanks for posting and I hope you continue to see increased improvements in your health.

 

 

 

[[po...]]

thank you so much for that wellness and lily again (sorry I missed your last post here lily) - I am just off to the vet to collect a sick cat, wioo be back later

 

P

[[po...]]

Wellness, I just want to report that my health is improving in leaps and bounds at last, since I came off caffeine(related or not i don't know but i suspect it is) I have only had one cold which only lasted 10 days in stead of dragging me down for months and months, plus I have had  a nightmare week with my 2 cats at death's door after nibbling at a chilli pepper plant a friend bought me, I thought it was out of reach on the fridge freezer but it wasn't and it is in the deadly nightshade family.

 

So for the last week I have been carrying cats back and forth (on public transport) to the vet, waiting for life or death calls from the vet, and I have managed to get some sleep on every single night apart from the first night when one of the poor cats was screaming in pain ( a sound I NEVER want to hear again).

 

Plus, to celebrate the news that they were both going t o survive and were off the drips etc, I had a huge glass of organic cider (cold from the fridge) and it had no effect on me, so I have tested it again and my sulfite sensitivity has gone, plus the alcohol didn't have any illl effects either, so I am going to slowly test all my other sensitivities and hope they are going too.

 

It is so good to know that my benzo friends are still here for me, as you can imagine, nobody else will ever understand…..

 

so thank you again for your good wishes.

 

PS I still have dreadful fatigue from coming off caffeine, but according to a book about it I just read, it takes 3 years for your body to metabolise all the caffeine stored in every organ of the body, and I  am only 1yr 4 months off it, the author of the book said that at 2 years and 6 months all the mental stuff had stopped from the caffeine wd but she still had the fatigue…...