Actual Diagnosis? Please read

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tysmyboo
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   Posted 3/13/2009 12:24 AM (GMT -6)   
 
If you have an actual diagnosis, what "label" did they give your head pain?
 
(some of you will notice I use the term 'head pain' a lot because I am not convinced that all things are migraines :-)
 
I have "officially" been diagnosed with Occipital Neuralgia.
 
"Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head.  Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards.  Some individuals will also experience pain in the scalp, forehead, and behind the eyes.  Their scalp may also be tender to the touch, and their eyes especially sensitive to light.  The location of pain is related to the areas supplied by the greater and lesser occipital nerves, which run from the area where the spinal column meets the neck, up to the scalp at the back of the head.  The pain is caused by irritation or injury to the nerves, which can be the result of trauma to the back of the head, pinching of the nerves by overly tight neck muscles, compression of the nerve as it leaves the spine due to osteoarthritis, or tumors or other types of lesions in the neck.  Localized inflammation or infection, gout, diabetes, blood vessel inflammation (vasculitis), and frequent lengthy periods of keeping the head in a downward and forward position are also associated with occipital neuralgia.  In many cases, however, no cause can be found.  A positive response (relief from pain) after an anesthetic nerve block will confirm the diagnosis." (borrowed from NIDS, National Institude of Neurological Disorgers and Stroke)
 
Please share your diagnosis as it may help someone else who is here to understand a little more about your condition and help them understand their own!
Thanks
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Rooster427
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Date Joined Feb 2009
Total Posts : 56
   Posted 3/13/2009 2:54 PM (GMT -6)   
Spontaneous CSF Leak(Cerbrospinal Fluid Leak)

Symptoms:
Orthostatic HA which is CONSTANT
Stiff Neck
Tingling and Numbness on face
Nausea
Depression (obviously)
But what does it FEEL like?? Many people have different symptoms which can make diagnoses difficult. For me it is a constant feeling of head pressure that starts as soon as I get out of bed. I sometimes feel drunk or dizzy. The HA is caused by the brain sagging and pressing on nerves. It is an extremely weird feeling and hard to describe, but basically it f-ing sucks!

Relief:
Lying Down
Caffeine

Cause:
Usually from head trauma or lumbar puncture
Increasing Number of spontaneous leak cases(that would be me) for which cause is unknown

How is it Diagnosed?
Usually patient history is enough to suspect leak
An MRI usually confirms leak but NOT ALWAYS, things doctors look for (and often miss) include:
Sagging of brain(similar to Chiari Malformation , in fact symptoms may mimic this)
Engorgement of venous nerves( they found this on my MRI after about 5 doctors had looked at them and I specifically had to tell them to look for it!)
Something called Meningheal enhancement, i don't think i spelled this right.
Many others people actually leak fluid out of nose and ears
If you suspect a leak it is key to research and inform your doctor as many of them have no clue what to look for
And Above all find a HA SPECIALIST!

There is a CURE!
Most heal with substantial bed rest and hydration
If not an Epidural Blood Patch is used
Unfortunately some people are chronic leakers (very low percentage, hoping this isnt me)
"God won't take me to what he can't take me through"


tysmyboo
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   Posted 3/13/2009 9:57 PM (GMT -6)   
Rooster-
Thank you for posting. I think this may be a big help for a lot of people who are looking for answers. Thank you for taking the time to post scool
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Annuk
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   Posted 3/14/2009 11:37 AM (GMT -6)   
Hemicrania Continua
This takes the form of continuous pain 24/7 with 3 - 5 exacerbations of the pain in any 24 hours. For me the pain is burning in my left eye (sometimes changes side) and the burning sensation runs down the side of my head. During an exacerbation my eye feels as if it is on fire, and it droops (looks like I have had a stroke) and sometimes waters. I feel out of it and very weak, am sensitive to noise and light. I also find difficulty understanding what is said to me and speaking is difficult and my speech is often slurred. Exacerbations can be triggered by alcohol.

This condition is diagnosed with the 'Indo Test' together with patient history. This headache responds to Indomethacin. Sadly nothing else works very well for Hemicrania Continua.

At the moment I am unable to have Indomethacin due to tummy troubles, but my consultant is doing his best to reduce the pain for me with what is left!

Chronic Migraine
This gives me pressure in my eyes and a general headache that is often deep in my head and can make me vomit. I am sensitive to light and sound with this as well. I am also sensitive to foodstuffs, particulary things with preservative and flavourings such as MSG. Also cheese, chocolate, coffee, oranges etc.

Sumatriptan injections, and am waiting to go into hospital for DHE.

For both of these conditions I have spent many years trying many different abortives and preventatives to no avail. I would point out my local Neuro believed I just had Migraine and was a bit baffled why a lot of meds did not work for me! I have not looked back since I saw my 'Headache Specialist' and would highly recommend anyone with head pain to find one!!

take care

Ann

P.s. Sarah, think this is a good thread, great idea!!
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tysmyboo
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   Posted 3/15/2009 10:12 AM (GMT -6)   
Thanks! and thank you for your post, I hope more people can take a minute to post what their diagnosis is and what experiences they have had.
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tysmyboo
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   Posted 3/15/2009 10:15 AM (GMT -6)   

Ann-

I am amazed at the number of doctors who just say "you have migraines" and hand you medications and go on their way. I was told that many, many times and I ALWAYS felt like a freak or a failure because the medications did not work.

It is a battle many of us have faced and I am glad that we have moved beyond that to more in depth, accurate information!!


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SmurfyShadow
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   Posted 3/17/2009 4:47 AM (GMT -6)   
OMG Ann, get to an eye specialist at a teaching hospital right away. I had the same thing last year...I just found out with a biopsy I have the following 1. Necrotizing Gramultous Inflamation 2. Auto Immune Disease 3. TUMOR My clinic took 2 weeks treating me for different things. I hurt so much after that I triggered into a migraine cuz of the pain, had no sleep. Called the doc crying cuz how much I hurt. Had the oncall doc so I demanded she read my chart history past few weeks. She gave me my cocktail, and shipped me to the hospital for a MRI. MRI revealed inflamation... got admitted for a week more tests and drugs whoopy. got discharged with "We dont know but you can lose your eye. We're sending you a world known eye insitute called Casey Eye Insitute". Lots to digest... I went twice got knocked under biopsy and diagnoses! You need to get second opinions and a MRI stat...um that means right away. (sorry Im one of the worse patients around, I got some medical training myself lol)
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications:  Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


tysmyboo
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   Posted 3/19/2009 7:38 PM (GMT -6)   
Anyone else?
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Kala UK
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Date Joined Oct 2006
Total Posts : 54
   Posted 3/20/2009 12:05 PM (GMT -6)   
Hi, I was diagnosed at the age of 7 with Sporadic Hemiplegic Migraine. I have listed the symptoms below:

- Episodes of prolonged aura (up to several days or weeks)

- Hemiplegia (paralysis on one side of the body)

- Fever

- Meningismus (symptoms of meningitis without the actual illness and accompanying inflammation)

- Impaired consciousness ranging from confusion to profound coma

- Headache, which may begin before the hemiplegia or be absent

- Ataxia (defective muscle coordination)

- The onset of the hemiplegia may be sudden and simulate a stroke.ยน

- Nausea and/or vomiting

- Phonophobia and/or photophobia

I experience all of these symptoms, although vomiting I experience rarely and in all the years I have suffered from these migraines I have only experienced photophobia once.

It is my left side that is affected.

I have recently been diagnosed with Chronic Hemiplegic Migraine (rather than Chronic Migraine) because Hemiplegic Migraine is my first diagnosis, after numerous other headache conditions have been ruled out, after over 11 years of suffering.

Also, only three weeks ago I was diagnosed with SUNA (after suffering from this condition for the past 5 to 6 years). I'm still researching this condition myself.

Kala

tysmyboo
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   Posted 3/23/2009 2:14 PM (GMT -6)   

Thank you Kala...someone may read that and understand their own condition better. Thank you for taking the time to post!!!

 

How are you feeling these days?

 


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nurse2
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Date Joined Jul 2005
Total Posts : 229
   Posted 3/27/2009 11:31 PM (GMT -6)   
Hey Everyone,
This is all so interesting as I too suffer from headaches 24/7, some of which are chronically debilitating. People look at you like you are drunk or something because you have that "lost" look in you eyes like you are removed from the human race. I've had 4 cervical spinal surgeries from herniated discs and degenerative disc disease and I attribute the biggest part of my headaches to this. Somedays I feel like running in front of a bus (figuratively, not literally) because it couldn't hurt any worse. They doc just increased my dose of Neurontin to 2700 mg. a day which has put 5lb. on me in the last week and it is messing with my vision and making me more tired....but that said...today is the first day in years that I haven't been watching for that bus. My spine certainly can't stand a constant weight gain no matter what the benifit of the med but it is something to think about. Hope you feel better.......it's sad when pain becomes such a part of your life that it seems like your closest friend!
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


nurse2
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Date Joined Jul 2005
Total Posts : 229
   Posted 4/1/2009 1:03 AM (GMT -6)   
Heaven help me but I think that this physical therapy is going to be the death of me! I couldn't even go today because I had sat upin the chair all night with chest pain and a headache and then since about 2 p.m. the afternoon it hit.....the headache to beat all other headaches. I've voited since 6 p.m. and have had every prescribed medicine I have. NO RELIEF!!!!!!! I just took some Phenergan and hopefully that will relax me enough so that can maybe get a nap. I haven't had a headache this bad in years. This is almost unbearable, even for me.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


Annuk
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Date Joined Jan 2006
Total Posts : 1308
   Posted 4/1/2009 1:28 PM (GMT -6)   
tysmyboo said...
Ann-

I am amazed at the number of doctors who just say "you have migraines" and hand you medications and go on their way. I was told that many, many times and I ALWAYS felt like a freak or a failure because the medications did not work.

It is a battle many of us have faced and I am glad that we have moved beyond that to more in depth, accurate information!!


Oh boy, that is such a good description of how things have gone for me too! My turning point was finding a Headache Specialist, who took me very seriously! This took about 30 years for me shocked I am still suffering but I am now equipped to manage my condition so much better, not just physically but mentally and emotionally too!!
Co-Moderator of the Migraine/Headache Forum


Annuk
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Date Joined Jan 2006
Total Posts : 1308
   Posted 4/1/2009 1:33 PM (GMT -6)   
Hi Smurfy,

Hey don't worry about my eye, the pain I experience in my eye with Hemicrania Continua is typical phenotype for this condition. The droopiness and eye watering is all a part of the autonomic symptoms that come with this condition!! But thanks so much for your concern!take care

Ann
Co-Moderator of the Migraine/Headache Forum

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