Dizzy while standing in queues or standing and talking

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DarrenC
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Date Joined Feb 2011
Total Posts : 8
   Posted 2/24/2011 8:30 AM (GMT -6)   
Hi everyone,

This is my first time here and I saw this post by Andrew59

"More often than not, I feel light-headed while I'm standing. Sort of like if it got much worse, I'd pass out. It also feels like I'm spaced out. I sometimes get this sitting down, but much milder. And almost never when I'm lying down. One doctor told me over the phone that my blood pressure is probably dropping too low. But when I visited the doctor's office I asked the nurse to take my blood pressure while I was standing up, it was normal. And I was feeling very light-headed when she did this. So this is all very confusing to me."


This sums me up and after 2 or so years I still have the same problem

I've had blood tests - Stood up and sat down - All fine
My Adrenal - All fine
Cholesterol - All fine

I'm gonna see the doctor again, who will look at me cockled again. She'll tell me its vertigo but I am convinced it is something else.

I find it difficult to stand and talk to someone - I wanna fall over
I hate queues - I feel so unbalanced

Its as if I have to keep moving to keep myself balanced

Supermarket lights and space make me feel easy

I get the same problem in the gym. Instead of feeling invigorated I feel unbalanced and very tired

Generally I feel tired all the time but I get plenty of sleep.
I eat a balanced diet and perhaps I am about 1 stone over weight
I am 42

Some of the posts on these boards are quite old and I am wondering if anyone has got over this.

DarrenC

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 3/16/2011 8:36 PM (GMT -6)   
google neurolly mediated hypotension or go to this web sitetp://www.ncf-net.org/forum/orthostatic98.htm
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

pluslouie
Regular Member


Date Joined Feb 2010
Total Posts : 55
   Posted 3/21/2011 12:11 AM (GMT -6)   
Check out POTS. Postural orthostatic tachycardia syndrome. http://www.dinet.org/pots_an_overview.htm My doctor did a orthostatic test (I'm not sure if that's what he called it, but something similar.) He took my BP laying down, sitting, and standing up. They also say it can take 10-30 minutes before your BP drops enough to matter. Certainly something to ask about.

JMR01
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 10/18/2011 3:56 PM (GMT -6)   
DarrenC,
 
I have never written to one of these boards but I had to ask you if you discovered any treatment because I have had the same symtoms for several years now.  It seems to be getting slightly worse every year.  I have been to two balance and dizzy centers and have had all the typical tests from an ENT to the neurologists.  All is well.  I am otherwise very healthy 44 year old.  I have to hold on to something when I enter any store.  I cannot have a conversation while standing.  I must always be moving or I feel unbalanced.  No doctor seems to understand the cause.  It is not BP related.  I am sure of that.  It is not that kind of feeling.
 
I notice that I can make it go away for seconds if I humm ( and kind of direct it to my one ear).  I believe this is somehow related to vibrating the nerve in my ear drum.  It sounds silly but it seems to help a little.
 
I would welcome any feedback you may have.
 
Thanks
 
 

realkazoo
New Member


Date Joined Nov 2011
Total Posts : 6
   Posted 11/21/2011 5:28 PM (GMT -6)   
Boy do I know how you feel. Any doctor that I have spoken about the feelings to have just looked at me like I am nuts. I don't know what causes it but I can tell you if you try to focus on ONE spot when you stand up or begin to feel dizzy/heavy it can help divert the fuzziness.

Leellaa
New Member


Date Joined Dec 2011
Total Posts : 3
   Posted 12/6/2011 10:54 PM (GMT -6)   
Orthostatic intolerance is not well understood by many doctors, and like ME/CFS, is often missed! I also went to vestibular rehab and they did not pick it up... was sent to neurologists, headache clinics, orthopedic surgeons, cardiologists! even! and still it was not detected....

It may not feel like a BP issue, but it most likely is. And there can be some overlap with other conditions, including ME/CFS....

Get it checked out. Watch Dr. Peter Rowe's YouTube video on orthostatic intolerance, the different forms, treatments, and how to get a diagnosis.. even articles you can take into your doctor...

Don't dismiss the possibility that you have some form of orthostatic intolerance... you'll feel so much better if you find out you have it, and what you can do about it.

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/8/2011 11:36 PM (GMT -6)   
It sounds like pots to me. I was diagnosed in Oct after suffering for 3 years. You can have your dr do a simple orthostatic bp, or you can do it yourself if you have a bp monitor. Mine jumps up by 30 with every position change. My GI diagnosed me surprisingly. I seen him for reflux and first appt he was asking me weird questions...if I had dry eyes, hands and feet always cold, dizzy, checked my pupils which didn't react to the light. For me, it's worse if I'm standing still, blood pools in my legs and feet. I have to constantly be moving or laying down. It's not a well known disorder but it's definitely something to ask about.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

liongirl22
New Member


Date Joined Jul 2011
Total Posts : 4
   Posted 2/25/2012 5:35 PM (GMT -6)   
I have this same problem.  Whenever I'm in the grocery store or other store like Walmart, etc I get very dizzy, shaky and hot.  It's not anxiety.  I also can't stand up for too long; if I'm upright I have to be moving otherwise I experience the above.  And forget about doing anything that requires having my arms over my head.  I'd fall over for sure. 
 
I also recently read something about POTS and a relationship to CFS. 

DarrenC
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 7/6/2012 3:54 PM (GMT -6)   
I was feeling more unwell than usual so I started googling again and came across the post I forgot I posted unaware that you good people replied.

To JMR01, I wish I could give you something positive but I still don't feel any better than when I first posted this. It's bearable and I can get by but sometimes it overwhelms me and I have to get away.

Now that I have seen your suggestions I have now got something to show my GP so thanks for that. I wish I could just turn the clock back a few years before all this started.

I'll be back once I've seen the Doc.

Hamid.infotech
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 1/27/2014 6:03 AM (GMT -6)   
Dear friends,
after googling my problems i have found this topic, actually i have almost the same symptoms for about 3 years, sometimes it getting worse and sometimes better. it is getting worse when im in a meeting speaking to a person or standing and not moving while talking to a person. seeing too many moving objects or sometimes while driving. my eyes goes too heavy, feeling unbalance...
im a programmer and i usually spend 7 to 10 hours per day in front of my computer!

all of my check up tests are fine also i did MRI and it was fine too.

@DarrenC, @JMR01
i will be pleased if you tell me how is it going after this years and share your experiences.

Thanks in advance
:)

DarrenC
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 1/27/2014 9:23 AM (GMT -6)   
Hi Hamid.infotech

If I'm honest I would say over all things haven't really improved, some aspects of it have got better and others worse. Standing in queues or standing in one spot and talking to someone still makes me feel spaced out and unbalanced. I can drive my car alright, although I won't do the motorways because everything moves to fast and the straighter and more open the road, the more uncomfortable it is.

Since I last posted, I had a MRI scan and the results were all fine, so along with my blood results and blood pressure, on paper, I shouldn't be unwell.

The annoying thing for me is that although the web is full of people like me, and yet it seems doctors are clueless !! My GP thinks its normal to get a bit dizzy, because she gets a bit dizzy herself?? What I would really like her to do is use her experience as a doctor and try to fathom out what is wrong with me and make use of her knowledge and the specialists that are available to her but that ain't going to happen. She is hampered by the fact NHS specialists pick and choose who they see. I think my doctor had to write to 3 hospitals just to get me a MRI scan. So I guess its not all her fault.

I am in no doubt that this all stems from an inner ear problem. When you get a problem with your inner ear, the eyes have to over compensate which leaves them heavy/ achy/ tired and if you have to stare, like you and I do, at a computer 7 hours a day, must take its toll. Now if your eyes were weak to begin with, then you've got double trouble. Which I guess makes sense but my argument is that if the human brain is good at "compensating" why after all these years....hasn't it?

There is a bit of me toying with the idea that I have fully compensated but what I have been left with is anxiety. As a process of elimination I'm going to ask the doc for some anti-anxiety meds and see if that helps.

Hamid.infotech
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 1/28/2014 4:02 AM (GMT -6)   
i have visited two different doctors about inner ear problem 6 month ago and they agreed these symptoms are not too much related to inner ear!
actually im in doubt with my eyes, especially my eyes muscles, i feel my eyes can not capture perfectly fast moving objects in front of me specially when im not moving! as i know eyes muscles send some signals to brain about current position and something like that, and when the signals are not correct it can cause balance problems.
my other symptoms in these situation is my eyelid start flicking! do you ?

DarrenC
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 1/28/2014 5:36 AM (GMT -6)   
No I don't get eyelid flicking. Yeah you are probably right about the eyes. I know exactly what you mean. All I know for sure is that there are a few things that all work together to keep you balanced with the inner ears and eyes being the key ones.

I would definitely get your eyes checked !!

A question for you. How do you feel in large supermarkets, like Asda or Tesco?? Personally I find the lighting and bright colours and busyness overwhelming. I've mentioned this to my optician but he just looks at me cockled.

One thing I've been trying recently (just this week in fact) is wearing my glasses properly. Out of laziness I was wearing my distance glasses for everything. Now I just wear those for driving and TV and wear close up glasses for everything else including computer work and reading. I'll let you know how I get on.

Although there seems to be a lot of sufferers on the web, these same sufferers don't seem to come back and say, I did this, this and this and now I'm fixed and what with the doctors scratching their heads because they don't really know its down to us work it out through a process of elimination.

I'm going to stick with wearing my glasses properly and get some anti-anxiety meds of the doc and if that don't work at least that's two more things I can tick off my list.

Keep me updated with your progress !

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 674
   Posted 1/29/2014 1:55 AM (GMT -6)   
Darren, I have Chronic Fatigue Syndrome & your symptoms mimic mine. People with CFS have a hard time standing in lines or standing in general. I do best seated or laying down. I like to sit with my feet up if possible, otherwise I get really tired & my legs feel really heavy. I will begin to get so exhausted while standing & I just want to sit down. I feel dizzy & lightheaded often. I need lots of sleep, I sleep about 10 to 12 hours per night but that is with medications. Without the meds I have bad insomnia & I wake up often during the night. Lights, noise & crowds overwhelm me & I have a hard time dealing with that. I feel very irritated & I have to calm myself down, my grandkids & the TV blaring will put me on edge, all my muscles feel tight. This will use up any energy I have so I have to watch it & keep pacing as best I can. I hope you can find out what you have & what you are dealing with. I know how hard it was for me before I was dx'd, just knowing helps. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

DarrenC
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 1/29/2014 4:41 AM (GMT -6)   
Hi Denise

CFS has crossed my mind and since my symtoms mimic yours, I'm going to mention it to the Doctor next week. I always feel drained despite getting at least 8 hours sleep. I am pretty sure I've mentioned this to her before but she sent me down a different path. ME has also crossed my mind which I think is closely related.

It really annoys me because doctors hate patients that try to self diagnose but what are you supposed to do when they aren't exactly forthcoming with answers or solutions.

When you were diagnosed with CFS, did the meds they give you make 'standing in queues' normal again and if you don't mind me asking, what meds did they give you?

Thanks

Darren

Hamid.infotech
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 2/2/2014 1:26 AM (GMT -6)   
almost same as me, in crowded places like supermarkets and highways i feel balance disorder when seeing too much objects moving in different directions! in these situations my eyes become too heavy i feel like im going to fall down.

tomorrow i have appointment with a ophthalmologist, i will give you the result.

also let me know about your wearing glasses progress. hope it works.

DarrenC said...
No I don't get eyelid flicking. Yeah you are probably right about the eyes. I know exactly what you mean. All I know for sure is that there are a few things that all work together to keep you balanced with the inner ears and eyes being the key ones.

I would definitely get your eyes checked !!

A question for you. How do you feel in large supermarkets, like Asda or Tesco?? Personally I find the lighting and bright colours and busyness overwhelming. I've mentioned this to my optician but he just looks at me cockled.

One thing I've been trying recently (just this week in fact) is wearing my glasses properly. Out of laziness I was wearing my distance glasses for everything. Now I just wear those for driving and TV and wear close up glasses for everything else including computer work and reading. I'll let you know how I get on.

Although there seems to be a lot of sufferers on the web, these same sufferers don't seem to come back and say, I did this, this and this and now I'm fixed and what with the doctors scratching their heads because they don't really know its down to us work it out through a process of elimination.

I'm going to stick with wearing my glasses properly and get some anti-anxiety meds of the doc and if that don't work at least that's two more things I can tick off my list.

Keep me updated with your progress !

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 674
   Posted 2/2/2014 5:14 AM (GMT -6)   
Darren, sorry it took me so long to reply, I only post on days I am not so sick.

The meds I take are not for CFS but for different symptoms I have like depression, insomnia & sleeping issues. There are no meds for this illness but I do take some supplements to help with my energy & cognitive issues. CoQ10, magnesium malate, I am going to go back on B12 to see if that will help. I tried it for awhile but went off of it during a really bad bout of depression & I don't think I gave it a good try. Others take D3 & L-Ribose just to name a few. I take dark chocolate daily which helps with brain fog & energy. I used to eat 20 grams of 85% dark chocolate, Lindt brand, twice a day. This really helped me but I have switched to Hersheys dark chocolate powder due to the fact that it is cheaper & I am on a fixed income. I am on disability. I haven't seen much of a difference but I may go back on the bars to double check, I just may not be seeing the difference if it is gradual.

Please let us know how things are going with you & when you see your Dr. I dx'd myself with Fibro but didn't believe it when my Rheumatologist said I had CFS, as well as Fibro. It took me about a year & going back to her again to be re-dx'd that I finally gave in. Now, I don't know why I questioned it but I think I didn't want another illness that Dr's just don't get. Oh well!! Take care, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

DarrenC
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/7/2014 8:59 AM (GMT -6)   
So I saw the doc and she nearly laughed and got cross when I asked if there was a chance I could have CFS or ME. She said she don't care what other doctors diagnose their patients but she won't be diagnosing me with that. She thinks these are made up names and a load of nonsense.

I asked her if I could have anxiety and she said yes. I asked her if I could have some anti-anxiety tablets and she said no. Instead she is sending me of for some CBT (Cognitive behavioral therapy). So this is all in my head then?? Not sure what I can expect from this but I'll keep an open mind.

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 674
   Posted 2/11/2014 4:35 AM (GMT -6)   
Darren, you are not the first & you certainly won't be the last to be told "it is all in your head". Many people with chronic illnesses have been told that. I think you need another Dr, one who is open minded & up on the newest info out there. Obviously, she is not keeping up with the times. CFS/ME & Fibro are now known to be actual illnesses, some Dr's just chose to remain in the dark ages. Since there is no specific Dr who treats these illnesses you might try an internist or a Rheumy. CBT will not help if your problem is CFS/ME or Fibro but could make it worse, so just a heads up. Keep us posted on how you are doing. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

rjb_1985
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/20/2014 3:40 PM (GMT -6)   
At last, someone with the same symptoms as me and a recent post. I am a 29yr old male, who wears glasses and works on the PC 8hrs a day. I have been having the same feeling of unbalance/light headedness on and off for the last 2yrs. This has been ever since I had a panic attack 2 yrs ago and had to phone an ambulance. I had never previously thought myself to be an anxious person (sure enough, going to an interview or before going on stage when I did amateur dramatics or perhaps before going on a long journey) but that is to be expected. I thought I was having a heart attack at the time, tight chest, muscle cramps, sweaty palms, struggling to breath (My tongue even went blue). I was unaware it was a panic attack because shamefully I thought that anxiety was a made up term for people that should just "get on with it". I since discovered I was wrong and after having 10 sessions of CBT therapy (last year) I am now much better at calming myself down and no longer live in fear of having another attack......that said....the unbalance feeling/vertigo remains and I still believe this is the cause of the anxiety. I never used to feel nauseas or unbalanced at the supermarket, but now I do. Even at home, or sat at my desk, or stood talking to someone. This comes and goes though on a daily to weekly basis. I am off to the doctors for the first time again since about 8 months ago...I got fed up of returning and being told the same thing. I understand when I can be anxious and the CBT helped me figure out how my body/fight or flight/adrenaline etc works but I swear down there are plenty of times I have nothing to be anxious about yet I feel unsteady/light headed etc.

My Bloods came back normal when tested. I have changed my diet, lost a stone and a half and bike to work daily. I no longer work night shifts. I have had both a stressful and non stressful job in these last 2 years and it makes no difference to me shaking this dizzy feeling. I am going to demand the doctor test me for inner ear/balance issues. Also I think I will return to the opticians to get them to check my eyes. I have read a number of forums that suggest anything from anxiety to CFS/ME/POTS/Diabetes/Hypertension/Blood Pressure. I did read something interesting about "Vertical Heterophoria Syndrome" where both pupils do not focus on the same point which can give you a blurred/distorted view leading to unbalance...The website specifically mentioned the lighting and spacing in large supermarkets making you feel uneasy as one of the symptoms. But anyway...there are a million and one reasons out there if you look on the net. I just hope between the people on this post we can try to understand a little bit more.

Thanks

Rob

DarrenC
New Member


Date Joined Feb 2011
Total Posts : 8
   Posted 2/21/2014 5:44 AM (GMT -6)   
Hello Rob ...Please to meet you !!

Anyhow an update from me

I still haven't booked my CBT sessions yet because I can't help feeling its a load of old tosh. I am sure I don't need someone to tell me the whys and where fors and how to learn to deal with it by someone who has never had it. I've dealt with this since 2009 and I have had good days and bad days and I personally think CBT is only good from the GP's point of view because it means you are out of their hair for a few months.

This has to be a physical problem and through a friend of a friend I'm off to see a chiropractor. Now I don't know about you guys but I suffer with a achy neck and shoulders, which maybe consistent with poor posture. A dodgy neck can cause unbalance and lightheadedness. Now this chiropractor reckons she sees a lot of people like me and she reckons more often than not it's a neck thing......so watch this space.

Trade
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/22/2014 2:38 PM (GMT -6)   
you very likely have vasovagal syndrome causing syncope when standing. it happens from prolonged standing especially in one place. some believe its a sodium deficiency leading to arythmia. have a cardiologist do a 'tilt table procedure'
http://www.hopkinsmedicine.org/healthlibrary/test_procedures/cardiovascular/tilt_table_procedure_92,P07985/

Trade
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/22/2014 2:46 PM (GMT -6)   
This describes everything you have listed along with other posts on here including pots

http://en.wikipedia.org/wiki/Vasovagal_response

rjb_1985
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/22/2014 3:40 PM (GMT -6)   
Hi, Let me know how you get on at the chiropractor. I too have an achy neck quite regularly from sat at my desk, or if i have been sat in an uncomfortable position for a while.

I did check out "vasovagal syndrome". I have never fainted though, or lost consciousness , despite sometimes feeling like i might. That is very rare though. Normally the feeling of unbalance. I do also have bouts of extreme tiredness where i just want to sleep. Again, this is a rarer symptom. Interestingly the symptom around forming words/mild stutter i relate to. Only mild and not all the time; it's not a stutter but i may mix my words up or get caught up in conversation. Seems to be worse the more i think about it.

I find though i look at a number of illnesses/syndromes online and find if i REALLY think hard about any of the symptoms i can find an occasion it matches. So many crossover symptoms it makes it difficult to know where to start with any diagnosis. My Doctor just seems to want to fob me off. I have my appointment on the 25/02

ihsan
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/1/2014 2:55 PM (GMT -6)   
hi peeps ,I am 27 and i am new here,i cant speak good English as like you people though i have the same symptoms as Darn and Hamid has,i got the white spread pains long ago then i went to a doc he gave me medicine and i got fine.after many years i got that problem again but actually white spread pain was not so bad though i got the other problems like neck getting tired and feel like i am not present in this world brain is sleeping and thinking alot which made me tired....unluckily i got these problem 2 years ago but was not very rare.but i did not know what to do cause no body knows it.i thought lets see doc he is psychiatrist.i was in the initial stages and my problem was not very bad though he told me to do EGG for brain,so he checked then he told me that my brain got weak so he gave me a medicine and that med made me like i am died but i was still in this world..i called him and told my doc the med made me more sick but he told i must take it.so i followed him and i got fever and i was not able to eat anything for many days after few days i started eating etc but i was still like sleeping and brain and head problems,then i had to go back where i work and doc told me i have to take his med for one year so i followed his med and i completed his one year course but that helped me only with two things like i can walk in rush and when some one talk i can hear him and dont feel very bore like was before.but the other stuff got weird after taking his tablet.i never have never woke up after taking his tablets and i cant stand on one place alot i have to walk or sit down or lay down.when i lay down i feel good but when i stand my put and back of my puts hurts.i cant concentrate on things.i feel very angry over little things...brain getting tired and food allergies,i feel good some times and some times feel very bad....i am in the other country and i know here are know good doc for this kind of illness.but i have recently searched and many symptom is related to fibromaylgia and i think i got it because i have ruined my sleeping timetable for many years but not sure about though it can be cause to....if some one find any good cure plz post here thanks for reading this...
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