Weaning off of Seroquel

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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 442
   Posted 7/25/2006 8:39 PM (GMT -7)   
Has anyone ever experienced any unpleasant or strange symptoms while trying to wean off of Seroquel?
 
I'm talking about body jerks, strange breathing patterns...& just strange feelings. 
 
If so, please get back about this & how long it lasted & the particulars about your symptoms.
 
Looking forward to any & all responses---Thanks--Robert

CATNIP
New Member


Date Joined Jul 2006
Total Posts : 5
   Posted 7/26/2006 9:10 PM (GMT -7)   
:-) Hi Wotan, I have been on Seroquel for 4 months and it is the only thing that helps me to sleep. My Dr. is weaning me off because he said one of the long term effects is body twitching and he doesn't want that to happen. Sounds like yours might stop as soon as you get off it. Wish you the best.

LUVBYTES1212
New Member


Date Joined Aug 2006
Total Posts : 8
   Posted 8/7/2006 12:57 PM (GMT -7)   
I WAS ON IT LARGE DOSES OF IT AND DIDNT LIKE THE WAY IT MADE ME FEEL! I ALWAYS WOKE UP WITH MASSIVE HEADACHES SO I STOPPED IT MYSELF!I DONT THINK YOU SHOULD DO IT YOURSELF IM JUST KIND OF A I DONT CARE WHAT HAPPENS KINDA PERSON WHICH IS NOT SO GOOD!
~~~TINA~~~


domaincat
Regular Member


Date Joined Nov 2005
Total Posts : 59
   Posted 8/25/2006 2:55 PM (GMT -7)   
CATNIP said...
:-) Hi Wotan, I have been on Seroquel for 4 months and it is the only thing that helps me to sleep. My Dr. is weaning me off because he said one of the long term effects is body twitching and he doesn't want that to happen. Sounds like yours might stop as soon as you get off it. Wish you the best.
This I find most interesting both the topic and this quote about the long term effects being body twitching.  I was on Seroquel for years and I did not like the way it made me a zombie and so sleepy and could hardly stay awake at work, etc.  Although it helped me to sleep at night and calm down, etc.  Since around the time I was started on Seroquel was when I started having legs movement and now restless leg syndrome, shaky leg.  One night when my legs were real bad I got up and realized that it was the bad Seroquel that was making the RLS syndrome much worse.  You mean to tell me that this body twitching is a long term effect?  And here I told doctor after doctor about the legs jumping and not one of them told me it could even be the Seroquel.  I have been off of that drug now for quite some time and I still to this day have the body twitching of restless leg syndrome, although I have found natural treatment for it. 

CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 8/27/2006 10:51 AM (GMT -7)   
Hi Wotan,

How are those withdrawal symptoms doing?

Rosie x
********************
People are not like fish: they do not work better battered.
 
********************


Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 442
   Posted 9/11/2006 6:07 AM (GMT -7)   
Hi Rosie, Domaincat & all others here---
 
I need some feedback!      OK, I stopped taking the Seroquel---July 17---nearly 2 months ago.  At that time, I was taking only 25 mg, for 4 months  (after 7 months of 50 mg)---so, i was taking this terrible stuff 11 months total.
 
Here's where i need some feedback from as many of my HWfamily as possible --to hopefully, give me some peace of mind.
 
I went off of it (from my pdoc's instructions)--after i was having horrid...body jerks...strange breathing sensations & vocal grunts (i had gone over that).
 
Pdoc had instructed me to go up a bit on my Valium---so, now i take 7.5 mg at bedtime---rather than 3 or 4 mg.
 
Initially...right afterward...in July...i was sleeping well......& fairly well consistently....until around September 1st.
 
  At that time...i started noticing...right before going off to sleep----jerks (small)--of my hands & .....at times, feet...& sometimes shoulder (always on left side)----before falling off.   Also, at times...."brain shocks".....sometimes going down theu my entire body...not "heavy"...very mild...but disturbing.
 
Called my pdoc.......he assured me it was nothing to worry about.   Then saw my neurologist...she gave me a "neuro" exam.....everything OK.    Then she asked if i wanted an MRI of brain....she said she did not feel i needed it. At first i said "no"...then changed mind...& got it--my Brain MRI was perfectly normal!  Great!
 
Now---Has ANYONE...anyone here---ever heard of these neurological symptoms....occuring....like SIX WEEKS AFTER stopping a medication? (Seroquel)-----does it take THAT LONG to get out of ones system?     I have gotten so disgusted..I even stopped my Neurontin (Was only taking 200 mg/day)------just to clean out my system..of the meds--only thing i now take---is good ol' Valium!
 
THIS week(Friday) i see my pdoc again!    And next week...i see my neurologist again.    
 
I had asked them...if i had something like "tardive dyskinesia" (i'm a terrible hypochondriac)----they ASSURED me --i do not!     Here again---these symotoms occur--ONLY RIGHT BEFORE FALLING OFF TO SLEEP!  NEVER..ever...during the day!   
 
I'm HOPING...& praying they go away eventually--& hoping & praying some people here---can relate to what i have said--AND can.......explain if they have had...a "delayed" reaction (like 6 weeks later)----from going off Seroquel!
 
(A quick "PS"....my therapist has been sick & i have not seen  her for 4 weeks.....at a time i really need her---hopefully she'll be back this Wednesday--our appt day)
 
Thank you all--& PLEASE...someone...anyone responding will help!    Blessings-Robert   

Ellie 1
Veteran Member


Date Joined Apr 2005
Total Posts : 1291
   Posted 9/11/2006 6:45 AM (GMT -7)   
Yes, that does seem like a long time to be having problems, but many of these drugs take weeks if not months to come completely out of your system. It also may have a little to do with being a self-fulfilled prophecy. You expect it to happen and so it does. If the doc and neuro, plus mri, (man have you had a workup) say normal. I would relax and assume all will return to normal soon. And I bet the sooner you relax, the sooner this will clear up. (wayyyy easier said than done I know, read some of my recent posts, I don't even know why I'm giving anyone advice, I'm a mess)
You take care Robert
Hope that doc is better and back day after tomorrow.
Ellie
Good judgement comes from experience and alot of that comes from bad judgement.
 
You just have to accept that some days you're the pigeon, and some days you're the statue. 
 


CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/11/2006 6:46 AM (GMT -7)   

Hi Wotan,

I've no experience of Seroquel myself, but I have seen a lot of posts (especially on the anxiety-panic board) about this kind of withdrawal symptom from meds -- "brain shocks" is exactly the way people there have described this feeling. There may have been someone there who had this coming off Seroquel (I remember it for things like Prozac). To me it sounds like one of the "Acute Withdrawal Reactions" listed on the following webiste:

http://emc.medicines.org.uk/emc/assets/c/html/displaydoc.asp?documentid=2295

I don't know how long this takes to clear up. -- Did your doc have any suggestions?

All best,

Rosie x


********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


tangerine bear
Veteran Member


Date Joined Aug 2005
Total Posts : 941
   Posted 9/11/2006 7:26 AM (GMT -7)   

Dear Friend Wotan,

I've been worrying about you lately, not having heard anything on A/P forum for a long while...

I'm sorry you are still going through all this misery with your sleep. I did a bit of reading just now to see if I could find anything on the internet, and it seems I just found mostly the same things you have already been reading ... nono ... not good for you to do that LOL (don't feel bad, I do the same thing!! My doc tells me "don't go on the internet" every time she give me a Rx). If your doctors (and your friend Bear...haha) are telling you that you don't have tardive dyskinesia, then you should stop worrying about that... if you had that I'm sure you would have it a lot more often than when you are falling asleep. I know you did a sleep study already, and I was wondering if you have given your sleep doc a call about this. I found something on the web about "myoclonic jerk", also called "Periodic Limb Movement", which is completely normal and benign. The article even mentions the vocal grunt sounds you mentioned. As for the brain zaps, they may be a withdrawl symptom, I know they are for SSRI's... and may take a while to go away, but I'm glad to hear that yours are mild. Here's a link to an article I found about myoclonic jerk:

 http://www.discovery.com/area/skinnyon/skinnyon971114/skinnyon.html

I know that all of us anxiety folks tend to worry excessively, but I hope you will try not to worry too much. Hope you are feeling better soon. (((Hugs)))

Bear :-)


It's a jungle out there.....
 
Theme song from "Monk" by Randy Newman
 
 


SUNSHINY
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 9/12/2006 5:07 PM (GMT -7)   
Hello All,
 
I am supposed to start Seroquel tonight 25mg. and being the hypochondriac that I am this thread is scaring the bejesus out of me...lol.
 
Before the weaning part, are there any GOOD things about SQ????

Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 442
   Posted 9/12/2006 5:11 PM (GMT -7)   
Don't be afraid.   Most people love this med.   You'll sleep well.   My pdoc thinks it's just my nerves---take care--Robert

CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/12/2006 5:32 PM (GMT -7)   
Hi  Sunshiny,
 
Ok, that's the danger with sharing this kind of info -- when someone has a bad experience everyone hears about it, but when things are going smoothly people tend to just tick along and few shout about great med experiences (except me -- citalopram is great for me!! -- but that's just for depression and anxiety). I won't say that I haven't heard about people having these body jerks coming off Seroquel before Wotan's post, and I won't say you shouldn't discuss this with your doc/pdoc before taking the meds, but if your doc is still sure this is the one to try, I *would* recommend you do -- because even body jerks are better than the potential scenario with your bipolar if you go without medication.
 
Have a look at the link I posted before, and the Seroquel pages -- http://www.seroquel.com/ -- and talk to your pdoc if you're still unsure.
 
Let us know how you go.
 
Rosie x
********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


SUNSHINY
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 9/13/2006 5:41 PM (GMT -7)   
Thanks for easing my worries about taking SQ...I always freak myself out when I go researching on the net about a new script. I also like the SQ site, I printed out the med calendar it will help a lot. The only side effect I noticed so far is I woke up in the middle of the night with my mouth as dry as cotton balls!!! I can deal with that though....I also take Xanax 3 tx a day at 0.25 mg. Sometimes I only take it twice a day cause the anxiety is not as bad as when i first started.
 
I really like this board and hope to have more to add soon.

CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/13/2006 5:53 PM (GMT -7)   
Good for you Sunshiny! -- I get dry mouth the first few days on meds too -- but it passes -- and in the meantime my water intake goes up many notches, which is never a bad thing (lots of toilet trips, but clearer skin!!)

Looking forward to seeing more of you here -- it's really helpful to have peeps around to support you during times like this, and the support here has been wonderful for me: I hope you find the same for yourself. :)

Rosie x
********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


PsychoChronie
Regular Member


Date Joined Sep 2006
Total Posts : 40
   Posted 9/15/2006 11:34 PM (GMT -7)   
My daughter, who was diagnosed with Bipolar disorder in October of 2003 at the age of 9, was started on combo of Lithium and Seroquel. But her Seroquel was started at 100 mg per day and within a few months she was up to 300 mg per day. Talk about zombie. She did this med combo for two years, at which point she had gained a ton of weight and started wetting the bed at night. Weaned her off of lithium first and onto Topomax, then weaned the Seroquel and switched to Geodon.
What I remember the benefits of the seroquel for her were...sleeping through the night, not feeling the creepy crawlies and diminishing the restless leg syndrome. Not seeing 'ghosts' and odd shapes in her room at night...during the day not 'reading peoples minds' and saying everyone hated her...the seroquel really helped her automatic thought distortions...now the geodon is doing a great job as well, and with the new combo, we are not seeing any weight gain (she's actually lost about 8 lbs) and the bedwetting has stopped.
With the 25 mg of seroquel, Sunshiny, you should not notice weight gain, and according to Megan's pdoc, the lower doses actually have more of a sleep effect than the higher doses...it definitely depends on the body's chemistry, thought. Seroquel is one of the tried and true atypical antipsychotic classification drugs....used a great deal with a great deal of wonderful results. Good luck and I am rooting for you!

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/16/2006 12:44 AM (GMT -7)   
I don't want to endorse a site and don't know if I can even post this. A moderator will have to tell me. But there is a site that I visit a lot that has to do with medications of all kinds. IT's called remedyfind.com. On this site consumers like us rate medicatons for different illnesses, on their effectiveness, side effects, ect. I find it very helpful. Professional information is given on all the illnesses and medication. Then you can go to an area where the patients discuss and rate the medications according to its unefulness in for them. Medications work differenty for all of us, and we take differerent combinations of medicaton. I believe we should be very aware of any and all side effects and interactions with other meds we are taking.
As far as seroquel, I have not taken it. I take lamictal and lithum for bipolar 2, as well as an antidepressant. I do know people who have taken it and have had success and some who have had problems. I would not indorse it or tell someone not to take it. Information and knowledge and powerful tools that we can use to help us better manage our illnesses. I have had mental/emotional problems for years so I know more about them than the physical problems I am facing now.
But I am trying my best to learn as much as I can about the new health issues I have.
The long term effects of seroquel should be looked at, and the short tem too. It is widely prescribed, but few doctors discuss the long term side effects with their patients.
I am just a big advocate for learning all you an about all the medicatons you take. Also, we cannot depend on the medicaton to solve everthing. It takes work on our part too. Changes in our lives, working through issues with a therapist, whatever it takes to acomplish good mental & physical health. I used to think that if I took medicine that it would make everything ok. I now believe the medicaton helps us to get to a place mentally and emotionally where we can deal with things and work through issues in our lives that cause us stress that can bring on these symptoms. I might be healthier physically now if I had eaten better, gotten more exercise, checked out the psych. drugs I took for long term side effects, and in general known more about my body and mind. But, it's never too late.
That's the good news.
I wish I had done more of this with my physical health. But, better late than never!
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/16/2006 5:40 AM (GMT -7)   
Hi Judyinky,

No problem with info like that at all -- very useful in fact, and I've seen a couple of people refer to this site as helpful (can't remember if it was in this forum or a-p). So a big *thank you* for bringing this in!

I think your approach is a very sound one -- educating ourselves on the condition and the meds that are used to treat it is very important. Yes, many of the side effects will only touch a few people out of the many who take them (I think the rule is that if 1% of patients get these side effects then they have to be listed). The trick is to be vigillant but not paranoid. If you spot a disruptive side effect, and that side effect is not one of the ones that clears up early, you can save yourself a lot of time and discomfort by alerting your doc to the problem (having the back-up of the info you've found can be a great help here too) and working out a change.

I also think that your concept of the place of medication in the treatment of this illness as a whole is spot on. All my reading on bipolar and its treatment supports what you say: sufferers have to learn to use their meds as *part* of their recovery, not see them as the one-stop solution. Yes, it's so anoying that it so often takes mistakes in our own lives to give us the clarity of learning from them, but you have done this and you are a stronger anmd wiser person for it: I salute you. I hope others can learn from the knowledge you've gained: that's what makes this site so helpful.

Thanks again for your post -- hit the nail on the head.

Rosie x
********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 442
   Posted 9/16/2006 6:21 AM (GMT -7)   
Well---i've been off Seroquel for 2 months 7 ALL my symptoms are gone.     Yesterday saw my pdoc just to update things---he knows everything that i went thru...& he insists...it was NOT the Seroquel!    Said it has very few if any extrapyrmidial symptoms (NOT like the "old" anti-psychotics--like Haldol, Thorazine & Mellaril)-----------He still feels it was just my anxiety---tho i feel differently---it's over now!
 
I now just take (at nite)--5 mg Valium & a Benadryl--& i am fine!
 
He DID say....maybe i was.."one in a million" of people who reacted negatively to this med (esp. since i was taking only 25 mg)---that's it. 
 
My therapist said the same thing....& next week, just gonna talk w my neurologist (i made a short "consultative" exam)---so, I'll ask her some questions & get her take---then....that'll be that!
 
Thanks for all of your input.  Bottom line is.............no one here really wrote of any bad or similar side efects from the Seroquel...like i had.-----again, thank you all--Robert

CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/16/2006 6:25 AM (GMT -7)   
Hi Robert --

So glad all those yucky symptoms have beaten a retreat. What a relief for you. Seroquel or anxiety, it's been horrible for you (and even if it is "just" the anxiety, I know how bad that can get -- you have my big sympathy). Just glad it's over -- may the next chapter be a sunny one for you!

Rosie x
********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


SUNSHINY
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 9/16/2006 5:58 PM (GMT -7)   
CounselorWCrohns said...
My daughter, who was diagnosed with Bipolar disorder in October of 2003 at the age of 9, was started on combo of Lithium and Seroquel. But her Seroquel was started at 100 mg per day and within a few months she was up to 300 mg per day. Talk about zombie. She did this med combo for two years, at which point she had gained a ton of weight and started wetting the bed at night. Weaned her off of lithium first and onto Topomax, then weaned the Seroquel and switched to Geodon.
What I remember the benefits of the seroquel for her were...sleeping through the night, not feeling the creepy crawlies and diminishing the restless leg syndrome. Not seeing 'ghosts' and odd shapes in her room at night...during the day not 'reading peoples minds' and saying everyone hated her...the seroquel really helped her automatic thought distortions...now the geodon is doing a great job as well, and with the new combo, we are not seeing any weight gain (she's actually lost about 8 lbs) and the bedwetting has stopped.
With the 25 mg of seroquel, Sunshiny, you should not notice weight gain, and according to Megan's pdoc, the lower doses actually have more of a sleep effect than the higher doses...it definitely depends on the body's chemistry, thought. Seroquel is one of the tried and true atypical antipsychotic classification drugs....used a great deal with a great deal of wonderful results. Good luck and I am rooting for you!
Thank you so much for giving me info on your daughters experience with Seroquel. I am esp.  relieved to hear that weight gain shouldn't be a concern since my dose is fairly low. That was a big worry but I didn't want to sound whiny bringing it up...lol.
 
 
Sunshiny

CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/16/2006 6:36 PM (GMT -7)   
Not a whiny thing at all Sunshiny. It's a concern with meds, and I reckon we all get that. But a couple of pounds, if you gain them, is getter than manias and depression -- and I speak as an ex-anorexic/bulimic! Well, ok, I also speak as a 30-something whose teenage-boy-type metabolism disappeared some time ago!!

Rosie x
********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


PsychoChronie
Regular Member


Date Joined Sep 2006
Total Posts : 40
   Posted 9/16/2006 7:34 PM (GMT -7)   
Sunshiny...you are allowed to be whiny if you want to be! I am pretty whiny myself as I have crohn's disease and will probably have to start taking steroids next week to get it under control...I am deathly afraid of 'blowing up'! Just keep an eye on the seroquel..do you keep a 'feeling' diary? It doesn't have to be anything big...well, if you do, about once a week weigh yourself (use same scale if you can) and keep a record, and just remember, you CAN take steps to discourage negative thoughts. And we are all here to root you on!
Soichiro Honda, the founder of Honda Motor Company, once said, "Success is 99 percent failure."


SUNSHINY
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 9/16/2006 9:32 PM (GMT -7)   
Funny you should mention journaling....no more than an half hour ago I entered my first entry for my "DRug Diary". I decided to keep a record since I never seem to remember anything once I go to the pdoc.I just spent the past few hours on the site one of the posters mentioned earlier the remedyfind.com and it is really interesting. It is absolutely amazing how side effects or lack thereof vary, from person to person, and sometimes on the same exact dosage!
My SQ is not working tonight and I took another one and still am awake(bad I know, but I have to go to sleep!) I have an appt in a few days and will tell the doc I took matters into my own hands one night only...
 
On another note...CounterClockwise, is there a Xanax thread? I can't find one.
 
CounselorWCrohns, I don't keep a scale in the house...it would malfunction from all the tears I'd get in it!!!   Seriously, weighing myself gets me too depressed, so I usually don't know until I go to the doc, last I checked I lost 4 pounds...thats when one of my meds made me very ill (Abilify).
 
Sunshiny

CounterClockwise
Veteran Member


Date Joined Jul 2006
Total Posts : 1529
   Posted 9/17/2006 4:36 AM (GMT -7)   
Good for you Sunshiny! -- Counselor's journalling idea was a really good one and I'm so glad you had already started doing this -- all invaluable infor for you and your pdoc. There are some good mood charts out there too -- just do a "bipolar mood chart" Google search and you'll find a load of them that you can download/print off. These can be really handy for keeping records on your bp and spotting any triggers -- and again they're great for the pdoc to see how you're progressing.

I hope you finally got some shut-eye last night. I'm glad you're going to tell your pdoc that you took an extra Seroquel -- it's not something you should have felt you had to do and it's worth being 100% honest with your pdoc at all times so that they have the clearest possible picture of how you're doing. To be honest, though, it takes a bit for these meds to get into the system and do their funky stuff, so taking an extra one for a night probably made no difference (though I hope it did help!).

I don't think there's a Xanax thread on this board, but there are definitely Xanax threads in the anxiety-panic forum that you could check out -- some useful info there. If you wanted to start your own thread here though (on Xanax or anything else) please do so -- just click on the "New Topic" button underneath the "Log in/Log off" link at the top of the page.

Rosie x
********************

People are not like fish: they do not work well battered.

When I'm not in my right mind, my left mind gets pretty crowded...

********************

 
Co-Moderator, Bipolar Forum


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 9/17/2006 2:52 PM (GMT -7)   
:-)  Hi All, i am posting this info for my daughter who is bi-polar and sitting next to me, she wanted me to write for her, so here goes    I would like to say that i have been on seriquil for about two years and the way it works effectively for me is to take it just bdfore i go to bed and then it puts me to sleep all nite. in the morning i do not feel any of the symptoms you have mentionsed, so i guess i am on e of the lucky ones. but i would like to ask you all a question,, i go to bed at 6 pm and am totally fatigued at that time. i sleep til 7 am in the morning so i do a lot of sleepin.  i am pretty active though, i get out of the house within a n  hour and just do things since i no longer can work(i am 38 and on ssdi), do any of you sleep lots of the hours in a day away because you are so tired?
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