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Old 08-14-2006, 02:41 PM   #1
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Anyone with MAV??

I'm looking for anyone with MAV to share their experiance. I'm wondering if MAV just ever goes away? Does VRT help? Any insight would be very helpful.

Thanks,
Kat

 
Old 08-14-2006, 02:48 PM   #2
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Re: Anyone with MAV??

try taking magnesium supplements and coq10 together for MAV. They have really worked for me, over anything else I have tried.

good luck

 
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Old 08-22-2006, 06:08 AM   #3
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Re: Anyone with MAV??

I've only been diagnosed with MAV for a few months, but I am finding some slight relief taking Beta Blockers and following a migraine trigger free diet.
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Old 08-22-2006, 07:32 AM   #4
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Re: Anyone with MAV??

Ldumont,

Thanks for your reply. I also am trying diet control. Can I ask what kind of beta blocker you are on and dosage? How long did it take to get some relief? I also tried taking one and not sure that I gave it time to work. I was freaked out by the side effects.

Thanks,

Kat

 
Old 08-22-2006, 09:51 AM   #5
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Cool Re: Anyone with MAV??

PART I

Hello,

I have been informally diagnosed with MAV, and continue to deal with symptoms (going on 12 years).

I am including two excerts here from older posts on MAV that I wrote, that you may find helpful:

From 2003:

"What is it?
Migraine is a problem where blood vessels in the head contract and relax abnormally. Depending on which blood vessels are acting up during a migraine event, different symptoms can occur. Headache is the most common migraine symptom, nausea and sensitivity to light are probably next on the list, followed by balance symptoms and visual aura.

Migraine Associated Vertigo is caused by poor blood circulation in the arteries in the head or to the blood supply that leads to the inner ears. It could be one or the other, or both areas involved that could cause balance symptoms.

This is the THIRD most common cause of vertiginous (having a sensation of whirling or falling: dizzy, giddy, lightheaded, reeling, woozy) symptoms.

Can this restriction/poor blood flow cause permanent damage in any way?
Migraine patients are at slightly greater risk for stroke. There is some research data indicating that migraine can cause ear and eye damage.

What causes it?
Sometimes a root cause is hard to determine. There is definitely a genetic component involved in migraine (for me, I have blood-relatives who also have some type of history involving vertigo). And migraine symptoms can be triggered by many things, including trauma, hormone levels, foods and barometric pressure changes. But causes are different for different people, and it’s more common to treat the condition than look for the real cause. An FYI that you may never know the reason you have them, or the reason why your symptoms get worse or feel better.

What are the symptoms?
From a balance perspective: Balance symptoms vary, and a person with Migraine Associated Vertigo will usually end up having a myriad of unexplained balance/vertiginous sensations/symptoms which tend to multiply the longer you have this condition. Symptoms fluctuate in sensations and severity. Sometimes you may have them very severely and they will come on all of a sudden, and sometimes you may carry them on some level throughout your days and nights and can feel them starting to worsen or alleviate.

Symptoms can also include feelings of rocking/swaying, spinning, elevator feeling, and unsteady gait, to name a few. Usually some type of headache is present with symptoms, but not always. Symptoms can come and go, sometimes going away for months at a time. And, you may not have all symptoms, or you may have more than your share – it can vary.

The primary symptom for women is an increase of symptoms during or around menstruation.

Migraine Associated Vertigo can also cause or trigger some inner ear conditions such as (for example) Benign Positional Vertigo (BPV, BPPV), so a person can have BVP on top of Migraine Associated Vertigo. How’s that for a double whammy?!

This also can lead to panic attacks and feelings of anxiety, which most people may experience due to their balance problem.


(continued)

 
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Old 08-22-2006, 09:52 AM   #6
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Cool Re: Anyone with MAV??

Part II (continued)

How is a diagnosis formed?
The “usual” tests for dizziness (ENG) are given and other dizzy-causing conditions are looked for (sometimes through MRI or blood work, to name a few). Sometimes the Rotary Chair test is given, especially if other tests came back “normal” (I did not have this one test). Other “dizzy” conditions are ruled out - for example, diagnosing Benign Positional Vertigo is ‘easy’ due to the way the eyes move upon examination, an ENG will determine if the cause is (for example) labyrinthitis, an auto-immune illness of the inner ear usually results in rapidly progressive hearing loss (this was a specific question I had, as I was exposed to a virus infection in the late 1980’s), and so on.

If all tests come back stating “normal” then other factors are taken into consideration to make the diagnosis of Migraine Associated Vertigo: #1 a positive reaction to one of the medications used to combat Migraine Associated Vertigo (in my case, my symptoms completely disappeared within three days on the medication), and #2 a look at the symptoms (headache with balance symptoms), as well as for me the fact that my symptoms were so much worse the week before and during my cycle. I have all the CLASSIC symptoms of Migraine Associated Vertigo.

Who can make the diagnosis?
My diagnosis was made by a Neuro-opthalmologist and my second opinion was confirmed by a Neurologist. That’s not to say that another specialist cannot make this diagnosis. It’s always good to start with your primary care physician. I learned that if an ENT suspects a migraine-related condition, they will usually recommend a neurologist because that type of specialist deals with migraine conditions. Migraine Associated Vertigo for some specialists is little known, so a diagnosis may not be given consideration initially.

Can Migraine Associated Vertigo be cured?
No. Migraine is often ‘outgrown’, particularly with menopause. This is not universal though - in a few women migraine gets worse after menopause. There is no cure, but the symptoms can often be effectively controlled with migraine preventatives.


What are the medications used to treat Migraine Associated Vertigo?
These 2 articles cover much (but not all) of the medications used in migraine. The first talks about the problems of using analgesics (like aspirin and many others) too frequently in migraine. The second is an in-depth discussion of several preventative medications, including Amitriptyline.
[url="http://www.aafp.org/afp/971115ap/moore.html"]http://www.aafp.org/afp/971115ap/moore.html[/url] [url="http://www.aafp.org/afp/971200ap/noble.html"]http://www.aafp.org/afp/971200ap/noble.html[/url]

A few more preventative meds have come out since the articles were published. Your primary care doctor may want to work with a local neurologist to find the right preventative for you. My own personal opinion on medication would be to try something in a low dose first, and definitely refrain from the “higher power” medications initially like Imitrex, which is also used to treat migraine, but is well known for some awful side effects.

How do these medications work?
The “usual” medications used to treat migraine conditions work as spasm alleviators to stabilize the spasms of the blood vessels.

However, there are some other medications that are used to treat migraine conditions (like the Amitriptyline) that are more commonly used a pain alleviators – however the Ami (for example) has different components than a “usual” migraine medication, and the effect on the brain is on the neurotransmitters. It is not known why a medication like Ami works so well on this type of migraine condition. Another medication (for example) very similar to the Ami is Nortriptyline. However, since the properties of the Nori are slightly different than the Ami, if a person gets great results on the AMi and then they try the Nori, they may get NO alleviation from their symptoms on the Nori. Because every one is different, a person may need to try a few different medications before finding one that alleviates the symptoms with tolerable or no side effects.

(continued)

 
Old 08-22-2006, 09:54 AM   #7
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Re: Anyone with MAV??

Part III (continued)

How do I know all about this?
I didn’t. If you read my posts on here starting with the Archives, you will see that I have had these symptoms for a VERY long time.

Years ago when my symptoms were almost intolerable, I went to a gamut of specialists. There were two specialists out of the group that suggested I was experiencing Migraine Associated Vertigo. I really didn’t know what it meant, as no-one took the time to completely explain it to me. I thought “migraine” only meant those truly bad headaches where you had to lie in a dark room and vomit until it passed. So, I blew it off as another misdiagnosis and continued my search. Back then, I was very emotional over my symptoms and fuzzy-headed, so I can only think that these were also some of the reasons why I didn’t pursue learning more about this condition.

Along the way, I did make additional calls to other medical fields – like Physical Therapy. Two of the physical therapists that I spoke to out of state who dealt with vestibular conditions also told me that I "probably had a little known condition called Migraine Associated Vertigo".

So, I started making some calls to states nearby to locate a Balance Center that I would be able to drive to.

I found a Balance Center in Indiana, and placed a call to see if I could speak to someone there about treatment. The people there were very sweet, and instead of speaking to a receptionist (which I anticipated, or at the very most, the Office Manager), I was put in touch with the Director of the entire facility. This gentleman took the time to listen to everything I wanted to say, including my idea for going to a Balance Center. He was very patient, and waited until I took a breath, and then told me that he hears about my symptoms all the time. He then went onto state that I didn’t need to pursue a Balance Center, because it was pretty apparent to him that I probably had Migraine Associated Vertigo.

I asked him a zillion questions, like (most importantly) how did he know that? He explained about how certain inner ear conditions are diagnosed (some of which I didn’t know); but now I know why I didn’t have some of the “inner ear conditions” that I thought I might have. We went over my history of testing and the specialists that I saw.

He was kind enough to send me some links via e-mail about this condition, as well as some other links pertaining to additional questions I had. In addition, one day I sent him an e-mail asking him if I could pick his brain with more questions, and we spent one full day e-mailing back and forth. I received more information from him in one day, remotely, than I did in speaking to a specialist in his office. What a blessing to have been put in touch with him.

I followed this up with a call to my neurologist, who knows me well. He told me that he was in agreement with the initial diagnosis of Migraine Associated Vertigo that I had received so long ago.

I also followed this up with a call to an Apothecary (they are a type of pharmacy that deals with providing special combinations of medications to people) – I wanted to talk to someone more in depth about migraine medications.

An aside about my medication experience: I got great results with the Ami that I mentioned – within three days my symptoms (wooziness and headache) were completely gone. But after a while, I developed side-ffects of a racing heart beat and difficulty swallowing. I had the racing heart beat checked out by my cardiologist, who told me this a usual side-effect and that it wouldn’t harm my heart. The swallowing issue was caused by this medication as well; I didn't realize it but this med is also used to "sedate" or delay the esophageal muscle But, I went off of it due to fright, and soon my symptoms came back. I am pretty nervous about taking medications, so I stayed away from thinking about that until recently.

At the suggestion of my neuro, my doctor, and the Apothecary, I will probably be trying the Ami again since I received great results, only at a lower dose or an every-other day dose to see how tolerable the side-effects are that way.

(continued)

Last edited by Wowwwweeee; 08-22-2006 at 09:58 AM.

 
Old 08-22-2006, 09:55 AM   #8
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Cool Re: Anyone with MAV??

Part IV (continued)

One last popular question: Can I fly with Migraine Associated Vertigo?
Yes, but the symptoms may be heightened for a while until things settle. I did fly out to Las Vegas in 2004, and the flight (for me) was VERY unsettling, as my dizziness symptoms increased. But once I got off the plane (both times), I was left feeling slightly "tipsy", but nothing that I couldn't handle.

My answers on here were based on the information I gained from my discussions and reading about Migraine Associated Vertigo, and my own experience with my symptoms."

From 2005:

"Been talking and e-mailing with the director of one of the balance centers, and he provided me some additional information on MAV, which, although was short in description, really hit home for me.

He said to think of "migraine" as not so much "headache" but rather "poor flow flood". This is why some people get confused when they hear the term MAV, because they immediately think of having headaches, rather than the other symptoms.

MAV is a condition where there is a spasming of arteries, which reduces blood flow, which causes symptoms. Yes, these symptoms CAN be headaches, but these symptoms can also be the myriad of bizarre sensations and imbalance that so many deal with.

Because the arteries that spasm change (meaning different arteries can go into spasm at different times), symptoms can vary, which is why (for example) some people may experience feelings of leaning to one side, and then have that change into feeling another form of imbalance OR disappear. Symptoms can fluctuate depending on what artery is spasming. Symptoms can disappear if there is no spasming.

Spasming can be triggered by things like food allergies, diets, stress and tension, environment (weather), and hormones, to name a few. Most people who have MAV probably have had it longer than their head symptoms started, and sometimes can be triggered by other disequlibrium issues.

Most MAV symptoms can be controlled by medications AND since other disequlibrium conditions usually arise with this, should always be treated with a course of Physical Rehab.

Why Physical rehab? People with MAV are usually overly sensitive to forms of motion, which leads to over-compensation of this sense. Many people with MAV may tend to have some "spinning" episodes AND deal with the same types of vertiginous issues that people with true inner ear disorders experience - physical therapy helps to get this over-sensitivity back under control."

Kat, what questions do you have specifically? xo

 
Old 08-22-2006, 10:51 AM   #9
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Re: Anyone with MAV??

Wowwwweeee,
That was a great post with great info!!! I have not been formally dx w/ MAV, but strongly suspect due to my symptoms and what a few Drs have mentioned. My question to you is...what age did this start for you?
I am 34. I have had this imbalance/rocking/nausea thing for 19 months. Been to a myriad of specialists. Had MRI of the brain twice. Mine came back with white spots which were suspected of previous migraine headaches. Back in my late teens, early twenties I got migraine headaches...some with aura, some w/out. Head crushing pain. for the past 10 years or so, I only get them maybe once a year. My symptoms I have now with the dizziness,swaying thing is almost all the time, with days of more severe and others I don't really notice it. But I never really have headaches with it. I notice sometimes it's more severe around mentrual cycle, but not always. I feel like crap for a few days after I fly. I cannot go into grocery stores, etc without feeling weird. Driving is actually okay for me. I excercise too.
I have anxiety over MS since they had to test me for that due to the spots ont the MRI, but they are not in the right place. 2 neuros said probably not MS. A neurotolgist said possibly MAV. My ENG came back normal. Never did a rotary chair. I am wondering if past migraine headaches manifests into this awful balance thing!

 
Old 08-22-2006, 11:36 AM   #10
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Re: Anyone with MAV??

OMG, I am so not worthy! That information posted above was amazing, Wowwwweeee! Nice to meet you!

Reading your post and others like it sure make me feel like I am less alone in this battle.
__________________
MAV w/symptoms since 1999.
Dxd 2006.

 
Old 08-22-2006, 02:45 PM   #11
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Re: Anyone with MAV??

Wowwwweeee,

Thank you, thank you!!! You gave me so much info. It really helps to have info from someone who has been there. I'm so grateful. This has been such an awful experiance for me and others.

Here go some ??? How would you know if you developed another condition in addition to MAV? Does your MAV have to be under control to do some kind of PT? When you are really struggling with imbalance should you push on or rest? Have you heard of anyone feeling like they are falling side to side when they walk? What is it that makes it hard to be in certain places, like the grocery or big rooms? Can an anxiety med knock out MAV? Have you had years (in your 12 of dealing with this) that you have been fine? Do you explain your "condition" to other people when you are having problems? Did you have "dry eyes".

I'm sorry for all the ?'s. There are days that I can hardly get out of bed. I'm trying to find acceptance and make a new normal for myself, while enjoying the things I can when I'm feeling up to it. I hope that makes sense. I wasted to much energy being upset about it....its time to move on and make the best of it I can while being realistic.

Again thanks! You made my day.

Kat

 
Old 08-23-2006, 08:19 AM   #12
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Re: Anyone with MAV??

Hi Rachel,

My symptoms started around age 29 (I am now 42). If you do a search on my old user name (Wowwweee), you can read a (very long) post about my symptoms, when it started, etc.

I used to work in the medical/physical rehab arena, so I also thought that I had MS, as some of my symptoms are not only inner ear related, but seem neurological in nature. I still have follow-up check-ups with my primary MD and neurologist. Sadly, my sister-in-law was recently diagnosed with MS – and her only symptoms at the time were occasional wooziness/dizziness, and some neurological issues with numbness/feeling like she was walking funny/pins-n-needles in her arms and legs. I also have been told that I do not have MS, however, I still consult with my neuro when my symptoms are really bothersome. You can definitely tell if you have MS by a spinal tap, however, if your neuro is comfortable that you do not have MS – I would try your best to relax about it and stop second-guessing that ruling out. It will only increase your stress, and increased stress (at least for me) = heightened symptoms.

I honestly cannot tell if my symptoms have settled over the years, I am compensating, or I am getting used to them, as I still have them on some level every day, but I am able to “function” better and be not so emotionally limited with the symptoms.

Currently, I am dealing with some inner ear congestion (according to my doctor), and my symptoms have not only increased, but have changed, so that I feel like I am tipping to the left but my body is being pulled to the right. Very scary.

Remember, with MAV, you can have the vertigo (wooziness, etc.) WITHOUT the headache. So many people hear the word “migraine” and automatically think “headache”.

Yes, spacially, I have a very difficult time – so things like stores, malls, movie theaters, and even the shower can be challenging and anxiety provoking for me. Some days I even have to change the way I do something (like shave my legs in the sink), so I don’t have to bend or look down in the shower.

Driving (especially at night) is very difficult – obviously, moreso on the days I am worse with symptoms, than others.

Yes, MAV can actually provoke or trigger other inner ear/imbalance issues, AND vice versa.

I’m sorry you are dealing with this awful concern. I was supposed to start a new job this week, but my symptoms are so increased (probably due to the inner ear congestion), that I am home. Blagh.

xo

 
Old 08-23-2006, 08:20 AM   #13
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Re: Anyone with MAV??

Hi Ldumont,

When you are dealing with symptoms for as long as I have been, you have A LOT to say, think about, and post! You ARE worthy, and definitely not alone in this battle.

Do you also have MAV?

xo

 
Old 08-23-2006, 08:44 AM   #14
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Re: Anyone with MAV??

Hi Kat,

I have read some of your other posts, and know that you are feeling depressed and anxious over this – as so many do and are. I also continue to deal on occasion with depression and anxiety, purely from the standpoint of having to deal with something not only baffling, but scary and limiting.

How would you know if you developed another condition in addition to MAV?
For me, after having symptoms for so long, if they change or increase, then I will usually make an appointment to see my doctor or neuro. To this day, I still experience heightened or “new/strange” symptoms that can physically and emotionally upset me. I have learned that sometimes certain symptoms are “just what they are”, meaning they have to run it’s course, and some symptoms I feel more comfortable getting checked out to ensure that it’s not something else.

I was told that MAV can produce a myriad of odd symptoms, sometimes they seem neurological, and sometimes they seem inner ear related. With time, I know when I feel that I should call my doctor, or when I should just ride it out.

Does your MAV have to be under control to do some kind of PT?
I think PT is good any time (my opinion only). I opted to let nature take it’s course, and have not done any PT to help with compensation. I’m just too nervous and worry about anything provoking my symptoms. My advice is that it never hurts to try, but I don’t take my own advice because sometimes (simply put) I am not that brave.

When you are really struggling with imbalance should you push on or rest?
For me, if I am spinny-dizzy, I stay right where I am until I can up without me or the room spinning. However, if I am woozy, with other symptoms (like feeling that I am going to tip over, lean to one side, pass out, etc.), I will make myself get up and do something close to home – so I will garden (pulling weeds is very therapeutic) or vaccum (for examples). Both things can make me feel woozier (all that bending and looking down), but sometimes emotionally pushing myself to do something physically gets me moving and more able to be more physical.

Of course, there are days when I simply need to sit quietly because my head is so “off”.

Have you heard of anyone feeling like they are falling side to side when they walk?
OMG, this is my MAIN symptom. It’s especially bad in stores, long walks, and after exercising. Try putting some cotton in your ears and see if that helps you feel more balanced. On my very bad days, I do this, with some good results. It does get very tiring feeling as if I am always being pulled or compelled to sit or walk to one side. Try explaining that symptom to someone! Ha.

What is it that makes it hard to be in certain places, like the grocery or big rooms?
I do not have a medical reason for that, as I am not a medical person, but for me, I think it’s all about the way my brain now perceives incoming data and my surroundings – so certain layouts, spaces, colors, and floor textures mix me up, causing over stimulation. Also, I think anxiety plays a part, as I am more “at peace” in surroundings that are familiar and “less tedious” to encounter.

It’s hard fighting head symptoms all the time, and I believe that I feel that I am fighting harder when in different surroundings, making not only my brain work harder, but my anxiety. I also feel that when I become more anxious, that probably incites more arterial spasming, causing heightened symptoms.

Can an anxiety med knock out MAV?
No. There is no cure for MAV – it is what it is. My opinion only, but among other results, the majority of anxiety meds mask the anxiety part, so you are able to better cope with your head symptoms, even when you still have them. Of course, MAV can be triggered by anxiety, so if you are dealing with high anxiety and go on something to help you with that, your MAV symptoms may lessened simply because the anxiety lessens.

I did seek out counseling to deal with my head symptoms, as they were causing me much distress. My counselor at the time said that although these types of meds have their important place in getting healthy, they do not teach a person to cope with their issues. I opted to not go on any meds because I wanted to learn coping mechanisms to deal with this condition without depending on anything pharmacological.

I did trial one anti-anxiety med, which did help alleviate my symptoms, and the underlying constant anxieties I carried with me. But I stopped it due to side-effects,

Have you had years (in your 12 of dealing with this) that you have been fine?
I have had about two symptom-free years spanning a few years in between. My symptoms though, are usually with me on some level, though on many days I am able to still do what I want with minimal issues. The past few months have been poor however, as my symptoms have been very bothersome and limiting.

Do you explain your "condition" to other people when you are having problems?
My close friends and family members know the whole story. Usually, I will simply tell people that I deal with “dizzy spells”, so sometimes I don’t do a lot when my head is feeling poorly.

It was a life change for me, and for my friends, who were used to me being fearless and the life of the party. But love me, love all of me – and that includes accepting me as I am NOW. Wooziness and all.

Did you have "dry eyes"?
No, but that doesn’t mean that your symptom of dry eye is abnormal. I have had symptoms that no-one else on this board seemed to have, and vice versa. Plus, your dry eyes may not even be related to your current situation.

I hear you on you last paragraph. Counseling helped me learn ways to accept and cope with the changes and limitations – it was a very challenging time for me. I continue to struggle, but I also continue to have good days now as well.

Post anytime. xo

 
Old 08-23-2006, 11:13 AM   #15
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Re: Anyone with MAV??

Thanks Wowwweee!.. I will look at your old posts.
I know I should get the MS out of my head, but it's hard to do that. Glad someone else can relate. Both neuro's said they didn't think I needed to do the spinal tap, just get follow up MRI's. I even went to a MS specialist. He says he thinks it's possibly MAV, some sort of vestibuopathy. He said he cannot say in writing that it's not MS, but stongly beleives it's not since my symptoms are not classical, nor does the MRI show it.
One last thing, what are your other neurological problems? Do you have any visual problems or anything muscular? I sometimes get RLS and I get a lot of muscle tension. My one nuero said it's anxiety. Anything weird that happens to me, I assume it's b/c I possibly have MS and I don't believe the Drs! I know...it's a bad way to be...

 
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