chronic pain in head everyday!!!!!

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islandgrown5
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/20/2009 11:02 AM (GMT -7)   
I have had chronic pain in my head everyday for over two years now and it is getting progressively worse!!!  I am 28 years old and have finally been referred to a neurologist, I was wondering if anybody else who has this same experience could provide me with some feedback on the procedures you went through or if any diagnosise was found, So far for me this is just the beginning I am on new meds AGAIN!!!  I have been on too many to list....  The pain is sooooo debilitating I have not been able to work as when the pain increases I feel so faint and actually do faint sometimes.
 
Any feedback anyone has would be greatly appreciated...... I feel so lost and just dissapointed with the fact that every doc or specialist I have gone to has no answers for me!!!!  Daily life is becoming more and more difficult!!
 
Thank you very much,
Jen

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/20/2009 11:34 AM (GMT -7)   
Islandgrown5
 
I would like to welcome yot to HW forums.  Sorry you have so much pain.
 
I had the same type of headaches years ago I lived on Staydol spray for two or three years.  I had all kinds of medications for the headaches.  Finally we found out I had cluster headached and I had constrictures in the veins.
 
My headaches just dissappeared one day.  I know there are a few members who have been dealing with headaches.  They will be along soon to help you out.
 
Best wishes
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/20/2009 6:29 PM (GMT -7)   
Welcome to the Chronic Pain Forum of Healing Well
 
Unfortunately, many of us go for years seeking a corrrect diagnosis.  I can tell you that it took me over 5  years before i received my diagnosis.  The search can be long and tiring.  I hard to seek out many specialists from many different areas before we were able to narrow down what was going on.  The only advice that I can give to you is do not give up.  If the answer does not sound right to you = keep searching.  I ended up at a major medical teaching institution and they were able to make a diagnosis that made sense to me.  If you health problems are extremely complicated, sometimes local doctors are not experienced enough to recognise rare diseases.
 
We are all hear for you.  Neurology sounds like a great place to start.  Good luck and keep us posted.

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 7/20/2009 8:04 PM (GMT -7)   
Jen, I want to welcome you to the forum. I am sorry to hear about your severe pain. I do think that you came to the right place. We will give you support, understanding, love, hope and friendship here and so much more. I know that this forum has been a tremendous help to me, personally. You will soon get to know people, get comfortable and feel the same, I hope.

I do think that neurology is a great place to start looking for answers. I do not know exactly what they will do or what tests they will run. I would think possible a MRI and a EEG to start with. And there are proabably many other test that may be done. I simply just don't know. But it seems like the best and logical place to look for answers. I know you want a diagnosis, a name for your condition. I agree that one should be given. Before your appt. it may be a good idea to start (if you haven't already) a headache journal. Describe your pain (sharp,stabbing,dull,aching,etc), rate your pain number (0-meaning no pain at all and 10-meaning the worst possible pain imagineable), how long it lasted, anything that helped or made it worse,etc. You get the picture. The more information you can give the better it will be for the doctor to help him diagnose your problem.

I do wish you the best. Are you being followed by a PM(pain management doctor)? That may also be an option for you. Talk to the neuro. about that. Ask questions you may have. Write them down before the appt. so you won't forget anything. When is your neuro. appt? I do wish you the best. Please feel free to post as olten as you need to. We all look forward to learning more about you along the way. One thing for certain, remember you are not alone. We are here to lend a ear, and help you if we can. I do wish you all the anwers you are searching for very soon.
Anice

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/20/2009 10:52 PM (GMT -7)   
I've had chronic pain in my upper back, neck, right shoulder, and head for 12 years. I have permanent muscle damage to my shoulder girdle. The head pain used to come infrequently, once or twice a week. Since I was in a car wreck 2 years ago and suffered whiplash, I've had the same pain, only worse, sharp pain in my head (right side only) nearly every day. It runs from the base of my skull to my ear and into my eye. I go to a manual physical therapist who loosens and readjusts my upper spine just under my skull and that helps for a while, but it's a temporary fix. I haven't had an MRI, but X-rays showed nothing unusual.

The only solution I have at the moment is adequate pain medication, which allows me to function. I take Opana ER (extended-release oxymorphone) for the upper back/head pain every 12 hours, and have extra regular Opana for the breakthrough pain, which is always my head and comes once or twice a day, and I take the breakthrough meds nearly every day. The pain feels like an icepick sticking through my skull.

My multitude of doctors haven't found a cause that we can fix, yet. I remain ever optimistic that eventually we will, but in the meantime, having sufficient pain meds is the best that they've come up with. I had a neurologist who was touted as "best in Denver Metro area" but became sadistic after a few years of treating me. She undermedicated me with pain meds (Norco-similar to Vicodin) and told me that I was crazy (her exact words) and that I had so much emotional pain mixed in with my physical pain that I couldn't tell the difference. That may have been true, but in the meantime I needed adequate pain relief to function at work and wasn't getting it from her, so after a 10 year relationship with her, which started off well, I found a new pain management specialist and finally have real relief from the pain.

Sorry I can't offer anything more positive than just getting on decent pain meds, but this has been my experience. It seems related to my upper neck, but at the moment no one is sure what to do about it. I wish you well. Keep checking back, because once we isolate and fix the root problem I will be crowing it from the rooftops. Good Luck!!!
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


islandgrown5
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/21/2009 9:55 AM (GMT -7)   
Thank you all!!!
I had my first Neuro. Appt last thurs he has prescribed me new meds (of course) And preformed that needle in the spine procedure..... dont know what its called. I am to be hooked up to a 24 hr heart monitor on thursday. He gave me some sample pain meds to try one called Frova that did absolutely nothing I might as well have taken a sugar pill..... It actually might have gotten a wee bit worse. The other called Relpax that has made me totally high and felt horrible no pain relief either, either way trial and error I guess I am documenting this for him as well. Needless to say I wont be taking anymore of these meds as I just see no point!!! The actual medicine I am on is called Topiramate which takes months to work apparantly the only problem is I have been on other Migraine type meds that have never worked, my family doc has steered away from the fact that this is migraines quite a while ago and now the neurologist is back on this kick..... Such a long haul!!!
Thank you everyone who is listening I really feel soooo alone!!!
I hope everyone is doing well I know how it feels hang in there its not easy!!!! :) :)

Jen

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 7/21/2009 10:36 AM (GMT -7)   
Jen
You are not alone here!, we are all here to support you! I am glad you have found us, and this HealingWell Chronic Pain Forum! I do hope you stick around and post ofter. As I said You really are not alone here at this forum we all know what it is like to experience Chronic Pain and we can all emthazie with you and share in the experience with you! Yes it isn't always easy to "hang in there" but we are "hanging in there " with you!

Welcome to our family at this Healing Well Chronic Pain Forum!
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

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