Occipital neuralgia caused by running?

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xyz
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Date Joined Jan 2007
Total Posts : 34
   Posted 1/3/2007 4:54 PM (GMT -6)   
Hi all,
 
I have recently recovered from my third bout with occipital neuralgia in three years.  I know this is not a common or widely understood ailment, but am wondering if someone here has experience with it.  Thankfully my symptoms are now dormant.  The main thing I'd like to know, and which the doctors can't seem to tell me, is what to do to keep it from coming back.
 
My symptoms originate from a nerve behind my left ear that seems to be getting repeatedly irritated, causing headachy/itchy sensations in my head and sunburny sensations on my neck.  (Recent MRI was normal.)  One of the things my doctor asked was whether I had any sports injuries, blows to the back of my head, car accidents, etc. and the answer is no.  But my first encounter with occipital neuralgia--which came about three years ago-- occurred about eight months after I decided to take up running several times a week for the first time in my life. I have continued my running habits since then and the symptoms have come back twice.  I have to wonder if there could be a connection, but I'd hate to have to give up running since I derive pleasure and health benefits from it.     
 
Any thoughts, anyone?  Thanks in advance! 

padukey
New Member


Date Joined Feb 2007
Total Posts : 12
   Posted 2/22/2007 11:24 PM (GMT -6)   
Dear xyz,

I recently had been diagnoised with Occipital Neuralgia also. I thought I was the only one on the earth with it! Mine started with a pain on the right side of my neck, then evenually caused pain in the back of my head. My scalp feels very tender and itchy also. My neuro had asked me the same questions-- car accident, blow to the head etc... I could not relate to anything. My neuro said it could have been something as simple as sleeping on my neck wrong. My symptons orginate from a nerve in my neck.

But believe me It all wasnt this easy. It probly toke 200 trips to the doctor and ER with weird head pain and tingling before I finally saw a Neuro and was diagnoised. My dr thinks I possibly could have injured my neck all due to stress. Whos Knows? all I do know was it was pretty stressful always being healthy then one night waking up with neck and head pains,I thought I had a tumor or something! !

Treatment: Chriopractor for 2 months --no help -
physical thearpy for 1 week-- felt worse
began steroid injections (anti-inflammatory) twice from Neuro- It has helped
massage thearpy on neck also helped alot!

My thoughts on your running are maybe you could be putting some strain on you a mucsle thats hitting that nerve again? I am not to sure myself. I seemed to get the same amount of info as you!
Have you ever had any problems with tingling feeling in your face or body? sometimes when I lay or sit in the same position for a while , It almost feels like Im being pricked by a needle?
I Hope I can be some help to you ! You can also e-mail me if youd like.

Thanks,
Carrie
padukey


holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 2/23/2007 2:02 PM (GMT -6)   
What are the symptoms of occipital neuralgia? I was in a car accident back in December and two weeks later my neck was so tense and full of pressure and I got the worse headache. Now I feel a pinching pain off and on at the back of my head. It comes and goes, but the headaches don't. It has been five weeks. Pain meds and preventatives don't. the chiropractor helps with the tense neck, but not the headache or the pinching pain. I am just wondering if it has anything to do with my occipital nerve because it is in the location of the pinching pain I often feel. I also get tension headaches, and my whole scalp hurts. Sometimes I just feel like someone hit me over the head with a baseball bat. I am just miserable. I see a neurologist on Tuesday, so hopefully I will have answers soon!

xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 2/23/2007 7:32 PM (GMT -6)   

Hi Carrie,

Great to hear from you.  No, you are definitely not alone...although you are the first person I have encountered who also has ON! So much of what you say rings a bell...frequent trips to the doctors and the ER...worried about a brain tumor...yes, yes.  The blank looks on the doctors' faces in the ER when I described my symptoms still bother me.  Even one of the neurologists I saw didn't know what ON was.  The weird pain, tingling, itching, pinpricks, etc. in the head are so hard to describe. Before I finally got diagnosed, the anxiety regarding whether the symptoms the sign of some horrible brain condition was overwhelming at times.  Yes, I also would occasionally feel the tingles/pinpricks elsewhere on my body, and on the side of the face near my temples, but not very often.  I had a lot of itching on the top/back of my ears though and once in a while one of my ears would turn deep red.

Have you found any swelling on your neck near the injured nerve?  I noticed a swollen patch at the very top of my neck behind my left ear while my symptoms were bad.  The swelling went down vanished as my symptoms went away.  Even though my symptoms have been mostly gone now for over a month and a half, that area is still a bit "sensitive" to the touch.  My doctor thinks that is where the original nerve injury was. 

That is interesting to hear that the steroid injection helped you.  I will keep that in mind if my symptoms return.  I have read that nerve block injections can help too.  Basically, my experience was that nothing but time and patience helped my symptoms go away.  I tried Tylenol, aspirin, prescription Alleve, hot packs, cold packs to no avail. 

It is frustrating trying to glean information about ON on the web, because there just isn't much there.  One interesting thing I have discovered is some doctors have linked ON to bad posture and walking and exercising with the head down and forward.  Somehow, bad posture causes the occipital nerves to be impacted and injured.  That rang a bell with me because I have always slouched a bit and haven't been good about good posture when standing, running or sitting up.  Needless to say I have really been working on my posture now.  It is all so weird to be doing this for the first time at age 40, but anything is worth a try to keep the symptoms away.

Thanks again for writing and sharing your experience, it was very helpful to me.  Feel better soon and let me know how things are going!

Take care,

Brian

(P.S. holmesla, do these symptoms sound familiar?)      

    


holmesla
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Date Joined Jan 2007
Total Posts : 196
   Posted 2/24/2007 5:56 PM (GMT -6)   

I just have no clue what is wrong with me. I was in a vehicle accident the day after Christmas. I wasn't hurt as it wasn't that bad of an accident. I went on with my life as normal. about two and a half weeks later I began getting headaches. (could be beore that, but you get a headache, you take medicine and then forget about it).

Anyways, I kind of figured it was a migraine and just took iburprofen. That didn't work, so I tried Midrin, which I had for menstrual migraines that I get sometimes and that didn't work. I finally went to the doctor. I don't want to bore you with the details. I have been to the doctor a few times, been on multiple pain meds, including narcotics, and no preventatives, no abortives including narcotics help with the pain. I did decide to go to a chiropractor and he said I have whiplash. He has been working with me and seems to be helping with the pressure I was having in my neck and back, but not helping with the headaches.

The symptoms don't really sound familiar...I just have pain...everywhere, particular where my occipital nerve is.

As for the pain. I have had one headache for 5 weeks no. Constant nagging pain that never stops, but the intensity does change and somestimes the location changes. It is so hard to explain and understand myself. I have pain in the back of my head and many times I feel like a pinching in the back of my head, where it meets my neck. My entire head aches, from the back of the head to my forehead. My temples hurt as well. Every now and then they hurt so much it feels as if they are about to burst. There are also times when I just wake up and it just feels like someone has just beat my head with a baseball bat.

I see a neurologist this week so hopefully he will figure it out because this has gone on way to long.


xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 2/25/2007 9:04 AM (GMT -6)   

holmesla,

To clarify, I had some headache symptoms too that did not seem to respond to medication, but they were usually accompanied by scalp tingling, itching, or extreme sensitivity on my scalp and neck (almost a sunburn sensation).  If you don't have these additional symptoms, maybe it's not ON, or maybe it is and your symptoms are just different.   Another possibility could be an injury to the joints at the top of your neck which is causing pain to radiate into your head.  I have heard of that happening with whiplash injuries.  Hopefully your neurologist visit will shed some light on what is going on. 

Hope you feel better soon.

Brian


holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 2/25/2007 12:13 PM (GMT -6)   
No, I don't have any tingling or anything, just pain and pressure. I am so ready for the visit with the neurologist so hopefully he can shed some light. I will keep you all posted. Thanks for listening and your support! I love this site!
 

padukey
New Member


Date Joined Feb 2007
Total Posts : 12
   Posted 2/25/2007 9:03 PM (GMT -6)   
Brian,

Thats interesting that you said doctors have linked ON to bad posture, The only time I feel the pin-pricks the worst is when I am at my computer. I also feel it during the day time to time when I sit to relax. Any time I sit down I always slouch! Ive been more aware lately on how I sit or lay trying to maintain a better posture.

for my scalp pain, I cant pin point a certain position or situation that makes it better or worse. It still comes and goes as it wants to. Its been better for the past month or so, but its still their..When you feel it coming back how long do you have it for ? This is my first time with it and its been 5 months. I know are situations are a little different, But just curious.

It feels good having someone else to talk to about it. Well, We can swap treatments and hope for the best for all of us!

Holmesla...Good luck at your appt ! keep us updated.
padukey


xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 2/26/2007 7:50 PM (GMT -6)   

Hi Carrie,

My symptoms seem to last for about 3 months.  I think the first time I may have had the symptoms longer, but can't recall for sure.  They are mild the first month, then get worse in the second month, and then at some point in the early part of the third month they start to get better again.  At a certain point I don't notice them anymore for days, from then on I still get a tingle/itch or two every few days, but nothing major.

You are absolutely right about sitting at the computer--that is when the symptoms get worse for me also.  Since my job requires a lot of computer time, it makes things difficult.  I am pretty sure now that the posture of leaning forward looking at the screen must be part of what triggers the problem.  I find sometimes if I get up and walk around, I can clear my head for a little while.  During my last bout with ON, I started avoiding using the computer while not at work (hard to do since I am an internet-aholic).  I am not sure if that sped up my recovery, but it seemed to help.

Are you feeling at all better now? Do you think the anti-inflammatory shots are causing the symptoms to improve for more than a short period of time? Anyway, you should be feeling better soon, I think!  Or if not, we can keep comparing notes until you do.  Hang in there and please keep us posted.   

Brian
 
p.s. good luck tomorrow holmesla!

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 2/27/2007 12:36 PM (GMT -6)   
Well, he didn't say anything about ON, but here is what he said.....
 
and yes, it was as a result of the vehicle accident I was in. Basically I have muscle damage along with the whiplash. During the accident my muscles were stretched, and my occipital nerve was irritated and is inflamed which is causing my migraine and neck pain and inflamation. He went ahead and gave me an occipital nerve block on both sides. I have no relief yet, in fact I feel worse, but have heard that it could take a few days before I feel relief. I hope so much this works, because I am going on 6 weeks of constant agonizing pain.
 
Thanks for caring so much. This site is great and so are you guys!

xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 2/28/2007 8:02 PM (GMT -6)   

holmesla,

Very interesting! I'm glad the neurologist was able to identify the problem so quickly and precisely.  Even if it's not ON, it sounds very similar.  Let us know how those occipital nerve blocks work for you.  I had read that they can be very helpful for ON patients.  I'm sorry to hear you don't feel better yet, but you are right, these things take time.  Hope you feel some relief very soon!

Take care,

Brian

 

padukey
New Member


Date Joined Feb 2007
Total Posts : 12
   Posted 2/28/2007 11:11 PM (GMT -6)   
Hi Brian,

I found a website tonite about ON and it was pretty interesting. It was about a decompression procedure that can be done to ON sufferers. Besides this procedure, I ve only heard of the one that cuts the nerves which can lead to permanent numbness. It made me feel good their is actually another procedure being done to help cure ON sufferers.
I had emailed this institute and requested more infomation, Im not to sure yet how successful it is ! just thought I'd share it with you. Hope all is well...

www.drjho.com


P.S - Hang in their Holmelsa, sometimes you feel worse before you get better ! Im sure you'll feel relief soon
padukey


xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 3/1/2007 8:17 PM (GMT -6)   

Carrie,

That was a nice find, thanks for sharing it!  I wasn't aware that this surgery was an option for ON, although it makes sense that it would help.   Let me know if you hear back from the institute what the success rate is.  FYI, I found a reference to a drug called Neurontin being used for treating ON.  Even though I'm symptom-free at the moment, I want to learn as much as I can so I'm going to research it some more.  I'll let you know if anything interesting turns up.   Did I mention that the first time I had ON, it was misdiagnosed as an infected subcutaneous cyst? I don't think many doctors are trained to recognize it.  Anyway, hope you're feeling better.

Take care,

Brian


padukey
New Member


Date Joined Feb 2007
Total Posts : 12
   Posted 3/1/2007 10:09 PM (GMT -6)   
Brian,

Within my first few months I had ON I developed a small lump on the right side of my head. My neuro had told me it was "just" a subcutaneous cyst. I still have it and it causes slight pain or pressure occasionaly. I never inquired any further about it . Do you think you could tell me a little bit more about it?

Im glad to hear your symptom-free. Ive been dealing with alot of scalp pain the past few days. Sometimes pain behind eyes. Nothing I cant deal with !

Thanks again...
padukey


xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 3/2/2007 7:13 PM (GMT -6)   
Carrie,
 
I think we have the same thing, and received the same misdiagnosis.  I get an area of swelling on my neck each time I have had ON, behind my left ear, just below where neck meets skull.  The swelling isn't noticeable when the symptoms first emerge, but as my scalp irritation etc. get worse, I start to feel "the spot" forming.  At first it is vaguely defined swelling, but after a while it forms into a small oval shaped cyst-like spot beneath the skin.  It is pliable to the touch, not hard.  Like you, I sometimes feel pain and pressure coming from it.  The pain/pressure is more noticable if I bend over to pick something up, or turn my head in a certain way.  I also feel a "pulsing" sensation coming from the spot when I touch it with my finger.
 
As my head symptoms improve, the spot gets smaller and smaller.  Then one day I find the swelling is completely gone, and my symptoms are gone as well.  Even after all head symptoms are gone, the spot is still sensitive to the touch every once in a while, and I sometimes feel a twinge there.
 
Based on discussions with my doctor, it seems that this spot is the source of the ON.  It is there that the nerve has been impacted, causing swelling.  As the nerve heals, the swelling goes down.  Apparently, the pain and pressure there are actually caused by little spasms in the nerve.  Weird stuff!
 
Anyway, I hope this is helpful and that you feel better soon!
 
Take care,
Brian

padukey
New Member


Date Joined Feb 2007
Total Posts : 12
   Posted 3/2/2007 9:49 PM (GMT -6)   
Brian,

Thanks for the reply... your right, we have the same thing and the same misdiagnosis! Only my cyst is located on the bottom right side of my head. It scary to feel any swelling on your head. I also get pain or a tender spot right where my neck meets my skull.

My scalp pain is minimal now, I usually just have it bad for a few days then it starts to subside slowly. But it doesnt take more then a week or so to come back again. Im trying to figure out what Im am doing around the times I do feel it, and it seems to come back sooner the more active I am. I think even when I am driving for a long period it seems to aggervate it. It must be the position Im in ? I dont know.... I guess sometimes it just comes about and who the heck knows why ?

I'd like to thank you again , You have been extremly helpful to me. It's nice to talk to someone that understands. I will definately fill you in with any new information I find. I'm still waiting on that doctor to email me more information on that procedure, Did you ever check that website out? If so, how did you feel about it ?

Thanks again...

Carrie
padukey


xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 3/4/2007 6:51 PM (GMT -6)   

Hi Carrie,

Glad to hear your scalp pain has mostly gone away, for the moment at least.   I found that the other symptoms (pinpricks, tingles, itching) were more constant, and the scalp pain/sensitivity tended to come and go more.  At the end of my ON "cycle" I end up with just the other symptoms, no scalp pain, and then those symptoms finally disappeared too.   Yes, it is very scary to find any swelling on or near your head.  I was very worried, but after the MRI of my head came out normal I felt much better. 

When you are driving, are you keeping your head back?  It sounds crazy, but I think that posture is key to ON.  I recently tried to confirm this by walking uphill with my shoulders slumped and head forward, and I could actually feel the muscles higher up in my neck--near the irritated spot--becoming constricted and tense.  Then I corrected my posture while walking up the same hill and noticed the main part of the tension/stress moved downward to the middle of the top of my shoulders area.  It was fascinating because it seemed to confirm that bad posture plays a role in creating muscle tension/stress in the occipital region. 

I did read the website and am not sure what to make of it.  I have always been squeamish about surgery, so I probably will not pursue that unless my symptoms come back and more conventional treatments don't help.  I think I would seek a second opinion before doing any surgery.  The problem may be finding a doctor with enough expertise in ON to actually give a second opinion.   Please keep me posted on your progress and research.  Yes, it is great to have someone to talk with who understands the VERY unique symptoms we have experienced with ON.  At least we know we aren't crazy!  Thank you also.

Take care,

Brian


babyboomer
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Date Joined Mar 2007
Total Posts : 3
   Posted 3/5/2007 6:10 PM (GMT -6)   
This thread of discussiond has confirmed that I am not crazy, psychosomatic or a hypochondriac. I have been experiencing bouts of numbness and tingling down my left face, jaw, arm and leg for 2 months now. I have gone to the ER thinking I was having a heart attack or a TIA. I have had a MRI and MRA of the brain and a Cervical CAT scan which shows some degenerative disc disease. I have been to a neurologist, cardiologist who put me on MICARDIS for high blood pressure under stress, an endocrinologist ( thyroid may be a little hypoactive) and a orthopedist who has just referred me to a pain manage Dr. who is reading my report and will get back to me. I get a little nervous when these episodes happen. I have tried to use a orthopedic memory foam pillow but that just seems to make the problem worse. The Occipital neuralgia comes close to what I am experiencing. Has anyone received any other confirmation of their symptoms. THANKS

bob-o
Regular Member


Date Joined Mar 2007
Total Posts : 37
   Posted 3/6/2007 11:06 AM (GMT -6)   

I am so excited that I found this forum!  I don't know if I have ON or not, but the symptoms sure do sound like what I'm experiencing.  It all started the first week in Nov. when I had a bad bout with my sinuses.  I coughed violently for 2 nights, and I remember how bad it hurt to cough.  After a week, all the sinus symptoms left except the headache - and it's STILL here!  From that time on, it hurts to cough or sneeze or bend over.  In Jan. I had 2 weeks of physical therapy, with the dr. thinking it was something in my neck.  But it was much worse after the 2 weeks.  In fact, after my last session I had my first episode of tingling, weird head things going on.  (All they did in therapy that day was heat and the electric impulses on my neck)  It felt like someone was blowing my head up like a balloon - it kept getting bigger and bigger, until I honestly thought it was goint to burst!  Very scary!!

Since then I've had an MRI on my head and neck.  The only thing they found is osteoarthritis (which I knew about) and bone spurs on my neck.  But the neurosurgeon said my neck looked like any other neck my age.  He thought I was either crazy or depressed.  One of my triggers is bending my head just slightly, like when I'm writing something or bowing my head for prayer.  And when I told him that I was really hurting from filling out the form in his waiting room, he suggested that often when we fill out a form like that, it reminds us of how bad we feel and that makes us feel worse!!  (Thanks for caring, Doc!)

When my symptoms are bad, I can't lie down.  That's when the "balloon-blowing-up" symptoms start, and I have to immediately get up.  The only way I can sleep then is sitting up, and one night I found that I couldn't even rest my head against the back of the sofa.

I've read that an MRI can't detect it if it's ON.  Have y'all found this to be true?

My family dr. (actually, she's a nurse practitioner) is willing to try anything and will investigate until she finds what's wrong!  Can you give me a particular website that would be helpful for her?  I don't know if what I have is ON (I've also looked up "cervicogenic headache"), but it's exciting to know that other people are experiencing something similar to me!  (Sorry, I don't mean to rejoice in your pain!!!)

If it is ON, do you think that "violent" coughing (MY terminology) could have started it?  And could the electric impulses from the physical therapist have made it much worse?
 
Please don't stop this thread - I need to hear what you all have to say!!!
 
Thanks so much!  Nancy

babyboomer
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Date Joined Mar 2007
Total Posts : 3
   Posted 3/6/2007 7:25 PM (GMT -6)   
I am still waiting to see a pain mgt. MD referred by the orthopedic. I too am worse when lying down. My neuro wanted to prescribe anxiety med which i declined. 18 Months ago I has severe vertigo which I believed happened when a chriopractor adjusted my neck. So I believe the neck is a fragile piece of body that has millions of nerves runing through it so yes I think the therapy could have aggravated something. I spoke to the pain mgt nurse and she assured me he uses no harse or drastic procedures to treat numbness and tingling. I see him on the 19th. I curently take 880 mg of inuprofen 3 times a day for the pain. My headahes are now a dull aching throb. I still get tingling in the head and often the face when I sit too long or lay down.

GOOD LUCK !! I 'll keep updating this thread as I get more info.

HormoneJ
New Member


Date Joined Mar 2007
Total Posts : 6
   Posted 3/7/2007 7:50 PM (GMT -6)   
Hi all... I won't repeat myself, but will point you to the post I made called "Strange Headaches".  I seem to have a mix of the description of both Cervicogenic Headaches and Occipital Neuralgia, along with what may well be a new type of migraine (new for me anyway).
 
Has anyone experienced this?  Place your hands on the back of your neck just to the side of the spine with fingers pointing toward the spine.  There's a soft spot, dented sort of place just below where the head and neck come together and next to the spine.  When I press gently I get the same sort of "full head" sensation that I would get if I pressed on my carotid arteries.  It's like my head is filling up or something.  Now, of course I'd never done this prior to having my "strange headache" so no idea if it has anything to do with anything.  I just fine it interesting.  I mentioned it to the neuro and got a blank stare.
 
Jeanne

SC4Bucs
New Member


Date Joined Feb 2007
Total Posts : 9
   Posted 3/8/2007 5:09 PM (GMT -6)   

Bob-O,

Yes, I beleive the severe coughing could have been what caused your ON. I have had it now for over 1 1/2 years and have no reasonable cause of mine that the DR.'s can find except for the coughing. I had a severe sinus infection before all of this started and coughed like crazy. Not long after I started having a severe headach that lasted for just over 6 months with no break. I was diagnosed with ON right away that lead to maybe cluster headaches and back to Occipital Neuralgia. I have had a Brain and Cervical Spine MRI's done with nothing found. I have also had 5 nerve block injections performed with little releif. I have tried neurontin, mobic and several migraine medications with no relief. The only thing I have found to work is Cymbalta. I have been on Cymbalta now for over 4 months and I can still feel the pain now and again but with the cymbalta I guess it does not seem to bother me as much. I thought the Dr. must have thought that i was depressed and that is why he tried that drug. But I have done research to find others that have found this drug helpful. There are a few side affects at first but I made it through them and now I don't really notice any of them.

Maybe this might help...ask your DR. yeah

 Rick

 


xyz
Regular Member


Date Joined Jan 2007
Total Posts : 34
   Posted 3/8/2007 6:55 PM (GMT -6)   
Baby boomer,

The fact that you are getting the tingles etc. in your face could mean you have trigerminal neuralgia. Maybe look that up and see if your symptoms fit.

Rick,

That's interesting that the Cymbalta helped your ON. I remember reading somewhere that someone was claiming that a muscle relaxant drug helped their neuralgia. I can't recall whether it was occipital or trigerminal neuralgia. Personally, I find that hard to believe, but maybe it relaxes the nerves (?) The frustrating fact is that so many remedies seem to be hit or miss depending on the individual trying them.

Take Care,
Brian

SC4Bucs
New Member


Date Joined Feb 2007
Total Posts : 9
   Posted 3/8/2007 8:53 PM (GMT -6)   
Brian,

The Cymbalta was origanaly designed for Severe depression. The FDA has just recently approved its use for nerve pain. It is not really a muscle relaxer.

It is what they call "a balanced and selective serotonin and norepinephrine reuptake inhibitor (SSNRI), and that it affects two naturally-occurring chemicals in the brain and in the spinal cord, serotonin and norepinephrine. Research suggests that these chemicals play a role in depression and pain."

In other words it blocks nerve pain or at least it works for me. Check it out...do some research...Let me know what you think.

Thanks,

Rick

bob-o
Regular Member


Date Joined Mar 2007
Total Posts : 37
   Posted 3/8/2007 9:02 PM (GMT -6)   
Rick, what were some of your side effects with Cymbalta when you first started it? How long did you take it before you felt any relief?
I'm going to see my family dr. tomorrow and will mention that to her.

Nancy
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