Doctors still on the list to see.

Kinesiologist -

Chiari specialist -

Chiropractor -

Physiologist -

Cervical Kyphosis. & Forward Head Posture.

Intracranial HYPOtension.

Still a big possibility. One of the nueros I've seen said he would think more of a low pressure headache than a raised pressure headache. I was not able to see him again, he lives far from my town. He was looking for brain sag on my MRI and Intracranial Hypotension/csf leak. It can be spontaneous. To determine the pressure inside your skull is by lumbar puncture. I had one done in 2010, and it is in itself a dangerous procedure. My level was at that time normal. My headaches are no longer postural and they are not orthostatic headaches, but my symptoms are that of this condition, and many times its hard for them to find the csf leak, IF they even end up finding it. Usually a bloodpatch is applied, but noone of my doctors suggested the procedure unless they find the leak.

Good Information - 
http://www.medscape.com/viewarticle/467001
http://archneur.ama-assn.org/cgi/content/full/60/12/1713 

Intracranial Hypotension -

General Information

• Intracranial hypotension is a condition in which there is negative pressure within the brain cavity.
• There are several possible causes:
  • Cerebrospinal fluid (CSF) leak from the spinal canal:
    • A leak following a lumbar puncture (spinal tap).
    • A defect in the dura (the covering the spinal tube).
      • Spontaneous, sometimes following exertion such as swinging a golf club.
      • A congenital weakness.
      • Following spinal surgery.
      • Following spinal trauma.
    • Following a shunt procedure for hydrocephalus.
      • Lumboperitoneal shunt.
      • Ventriculoperitoneal shunt with a low pressure valve.
• In some cases, spinal CSF leaks can lead to a descent of the cerebellar tonsils into the spinal canal, similar to a Chiari malformation.
• Large spinal dural defects can lead to herniation of the spinal cord into the defect. 

Symptoms:
 - vertigo
- postural headaches
-facial numbness and pain
- visual disturbances
-nausea
-pain when sneezing,coughing or using the bathroom.
-vomiting
-hearing loss or tinnitus
-neck pain

 on MRI can show brain sag or acquired Chiari Malformation. ( downward displacement of brain matter. )

Intracranial HYPERtenstion.

Both intracranial Hypotension and Hypertension are still not fully understood.
Honestly, to me..either of them are a possibility with my symptoms. None of my neurologist have ever mentioned Papilledema, so I'm pretty possitive that I do not have it.

Papilledema - (or papilloedema) is optic disc swelling that is caused by increased intracranial pressure. The swelling is usually bilateral and can occur over a period of hours to weeks. Can create vision loss or vision disturbances.
  
Good information: http://webeye.ophth.uiowa.edu/educational-articles/item/172

Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri). This can cause serious health problems and brain herniation.


An increase in intracranial pressure is a serious medical problem. The pressure itself can damage the brain or spinal cord by pressing on important brain structures and by restricting blood flow into the brain.
Many conditions can increase intracranial pressure. Common causes include:

• Aneurysm rupture and subarachnoid hemorrhage
• Brain tumor
• Encephalitis
• Head injury
• Hydrocephalus (increased fluid around the brain)
• Hypertensive brain hemorrhage
• Intraventricular hemorrhage
• Meningitis
• Subdural hematoma
• Status epilepticus
• Stroke

Symptoms

Infants:

• Drowsiness
• Separated sutures on the skull
• Bulging of the soft spot on top of the head (bulging fontanelle)
• Vomiting

Older children and adults:

• Behavior changes
• Decreased consciousness
• Headache
• Lethargy
• Neurological symptoms, including weakness, numbness, eye movement problems, and double vision
• Seizures
• Vomiting

Specialists I've seen and their "findings."

Recap : Doctors, guesses and findings 

Findings that are 100% sure, by test results. >>

Vitamim b12 deficiency 

Really Low Vitamin D deficiency 

Some loss of the lordosis in my cervical spine
Infected molars, that need to be removed.

So, I have seen 5 neurologist one being a neuro-ophthalmologist, an infectious disease doctor, orthopedic surgeon, a sports medicine/spine doctor, a rheumatologist, a dentist and an oncologist.

1st Neurologist - Had thought it was a pinched nerve in my neck. Results came back normal, he gave me gabepentin because he said my neck muscles looked "tense." I took this medicine once, and it made me so dizzy I felt like I was going to run into the wall. After the MRI he pretty much wrote me off and said that it was stress.

2nd Neurologist - He was generally concerned and listened carefully to everything I complained about. He also got together with my primary care doctor and went over my tests. He ordered the extensive blood work in the hospital and found the vitamin b12 and vitamin D deficiencies. I also saw him when I was admitted to the hospital. After the "normal " MRIs he did finally say that he thinks nothing else is wrong with me. After seeing him so many times after my MRI he started to tell me " you should maybe see a psychiatrist. " and that maybe its anxiety.

3rd Neurologist - He had thought outside the box a little more. He focused on the fact that these head pains were persistent. He thought maybe a csf leak, in which none of my doctors would listen to me when I had mentioned the possibility. He ordered a mri to look for venous sinus thrombosis, and brain sag. I could no longer see him though because he was so far from my city. << he was my favorite.

4th Neurologist - He was nice and has never mentioned anxiety once. He also wanted an mri/mra of the brain and neck. He is the Neurologist that said my neck was "very very straight." He said that my MRI's were normal though and gave me topamax, and said maybe I have atypical migraines but never officially diagnosed me with it.

5th Neuro-ophthalmologist - Saw him on December 14, 2011. He of course, saw nothing on the MRI's. He did say that there was some loss of the lordosis in my cervical spine. He said that there was still small bit of curve left though. He wants me to get a nerve conduction test in a month. He also sent me for physical therapy for my neck and posture.

Infectious Disease - Found ehrliciosis, but it was not definite when I had contracted it...he gave me doxycicline and said that there was nothing else that he could do after that.


Ortho Surgeon - Looked for a csf leak in the spine ( not brain or neck ) said everything looked fine. He rushed me out the door, I felt like he didn't really listen to me at all or look at my history.


Sports Medicine Doctor - He looked at my spine MRI's said that nothing looked abnormal and gave me a prescription for physical therapy....for what though? Oh doctors are so silly, he saw me for about 4 minutes.


Oncologist - She did a bunch of blood work, and told me that I do not have any cancer of the blood. She was really sweet and told me that after all the doctors I had seen maybe I should get a counselor.


Rheumatologist - Looked over my "history" and listened to my story. She bent my legs and arms, looked at some of my tests and said that she saw nothing and said it was most likely Fibromyalgia. She gave me Lyrica and I haven't seen her again. I don't really believe in unexplained pain.

Dentist - She took xrays of my teeth, told me that my molars were infected a little.I told her about my weird story of symptoms and she said that TMJD could be the cause and that it sounded like I had that disorder. She gave me antibiotics and then said to call an oral surgeon to get them pulled as soon as I got a chance.

My Symptoms in Depth.

• Tingling in my face, scalp, hands. - this occurs usually most in the morning on my face, but is always on going through out everyday. some days are worse than others.
• Hurts to strain, sneeze, use the restroom etc.
• Burning in hands and neck 
• Head feels heavy - My head often feels "heavy" weighting down on my neck.
• Head pains and neck pains/ my headaches - I have a daily persistent headache which is dull on a scale of 5 but then throughout the day, randomly I will get shooting pains for about 10 seconds or less. My headaches are not one sided and are not often "throbbing" type headaches. When I get shooting pains they are accompanied by the feeling of something pulling down on my head.
• Fatigue - I always feel tired and have no energy, could be due to my vitamin deficiencies though.
• Ears popping and pain- my ears have really been getting worse, popping and the pressure "feeling" really bugs me.
• Eyes - I get a feeling that needles are poking my eyelids, it is so strange and painful. It feels like someone is stretching my eyelids. :( 
• Facial Muscle Feeling - It is hard to describe but when I move my facial muscles, it is a tight feeling, it feels really forced and is sore when I do make a surprised facial expressions.
• Facial pain - I wake up feeling like my face is bruised on the inside. My forehead, chin, and cheeks feel like I've been hit.
• Feelingoff balance - often I feel off-balance. Not vertigo, as I dont feel like I am spinning but back and forth, like I am on a boat.
• Shock like sensations, pricks - I get pin like sensations in my face,scalp, head, fingertips,neck.
• Sometimes sore throat, feels weird when swallowing - At times its the back of my neck, but even the "front". I also feel like something is in my throat. I get jabs of pain in my throat all the time as well as my neck.
• Base of skull soreness - I always have persistent soreness and pain in the back of my head/ where my neck and skull come together.
• Sometimes jaw pain and tickling in ear with accompanied ear pressure - I do grind my teeth at night and wake up with them "stuck" together.

Adult Skull Sutures.

Soooo I've noticed that down my skull vertically is a soft crevasse. It is tender to touch, and it pretty weird to me. I don't know if this is normal. I have read everywhere that an adult would not have any soft spots. It's not really a spot per say its more of a line down my head that is soft and tender. My actual skull is a strange shape but I don't think that has anything to do with my issues. Just thought it was interesting.

There are new findings that certain diseases and conditions do cause separated sutures, even in adults.

here is a picture of a skull that LOOKS how mine feels to me.

Chiari Malformation.

Still a possibility although my neurologist shrugged it off and said that my tonsils are not 5mm below the foramen magnum. I need to see a specialist that is for this condition. I have a lot of the symptoms.

This picture is not of my actual brain it is a googled image.

Arnold–Chiari malformation, or often simply Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating ^[1] hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow.<sup>[2]


http://chiarione.org/anatomy.html</sup>

One of my fears.

When you don't know what is causing you to feel so bad, you can develop health anxiety. I know that I am constantly worried now that I'm going to have a bad pain in my head or neck.

Brain herniation is one of my biggest fears.

This is not my brain, it is a googled image.

Brain herniation, also known as cistern obliteration, is a deadly side effect of very high intracranial pressure that occurs when the brain shifts across structures within the skull. The brain can shift by such structures as the falx cerebri, the tentorium cerebelli, and even through the hole called the foramen magnum in the base of the skull (through which the spinal cord connects with the brain). Herniation can be caused by a number of factors that cause a mass effect and increase intracranial pressure (ICP): these include traumatic brain injury, stroke, or brain tumor.^[1]  Wikipedia.

Dentist ( TMJD ) - Decemeber 2011

After 8 years, of not going to the dentist, I finally had good enough insurance to go. I didnt have any cavities, surprisingly.  I told my dentist of my weird pains...she suggested I might have TMD/TMJ now. I am scheduled to get my three molars out and see an Oral Surgeon next week, I am going to talk to him more about TMD.

TMJD : Temporomandibular joint disorder (TMJD or TM), or TMJ syndrome, is an umbrella term covering acute or chronic inflammation of the temporomandibular joint, which connects the mandible to the skull. The disorder and resultant dysfunction can result in significant pain and impairment. Because the disorder transcends the boundaries between several health-care disciplines—in particular, dentistry and neurology—there are a variety of treatment approaches. from Wikipedia. 

Here is a picture of my daughter before and now. She is 7 1/2 months.

August 2011 - November 2011

So many medical conditions ran through my head each day. I saw a 3rd neurologist, he scheduled me for another MRI/MRA of my brain. He wanted to cancel out venous sinus thrombosis and brain sag/ csf leak.

In August I found out that I was 8 weeks pregnant. So I decided to wait on the MRi. I had so many things to think of. I had been with my boyfriend for 4 years...we had been through so much. I am a christian, and morally I just could not get an abortion. I never technically was diagnosed so I assumed that I could handle it.

The months I was pregnant, I noticed a decrease in a lot of my symptoms. I still hand random tingling but not so much burning in my neck. Not so many bad pains in my head. My family then began to think that " It was all in my head." " How does an illness just all the sudden get better?" " I think it's because your mind is on something else." - Ugh. Maybe they were rite....my mind was off of feeling so sick..but I could not completely ignore my pains. I had my daughter April 11, 2011. Not epidural or meds because I did not want to take the risk of another headache.

Ive yet to go to a Chiari Malformation Doctor, it is still on my list. My daughter was healthy and after I delivered and quit breastfeeding it was on to the 4th neurologist. I needed a closer neuro to my city.

2 months after my daughter was born I started having severe headaches again.I had the MRI/MRA without contrast done, and everything came back normal. *Sigh. All he said was " your neck is really straight! " - I thought that was a good thing....untill I researched cervical kyphosis and loss of cervical curve.

                                  The above picture is not of my mri, it was a google image. 

Definition of Cervical Kyphosis:

Cervical kyphosis is a name given to the condition where the normal curve of the neck begins to straighten. Cervical kyphosis can progress to the point where the curve in the neck actually reverses, going in the opposite direction from its normal, healthy state.

I was given Tompomax at the time but did not have insurance to get it.

November 2009- July 2011

I'll write the story of the on-set, specialist I've seen, their findings, and their "guesses." Over the years, I have been in numerous accidents...Not to mention, I have horrible posture. If blogger had a timeline, it would help greatly to explain in short terms.The doctors/specialists I've seen are highlighted.


November to Early December - Around this time my family and I were planning a winter vacation. We decided to visit Deep Creek, Maryland in Dec,  2010. I was 19 at the time.

After the vacation, I had really bad constipation and stomach pains. A gastroenterologist doctor prescribed me Nexium for acid reflux. Note : being a bad patient, I didn't take it and it started to get better. At that time I also experienced facial tingling short after. I personally don't think they have anything to do with each other. Called my doctor and told her about the tingling, she told me to make an appointment with her and a Neurologist.

December 15, 2009 - I was just sitting in my room. I kept feeling a dull pain in my neck, but ignored it. A couple minutes later I felt a sharp pain on the left side of my neck that radiated to the top of my head. Mind you, this was thee worst pain I had ever felt in my entire life. It felt like someone was pulling down on my head. My boyfriend called 911, as a screamed in agony on the floor. It lasted under a minute, I passed out for a few seconds but remained able to comprehend the medics.

911 had arrived and took me to the local hospital. The ER preformed a CT of my neck and brain and gave me some painkillers. The scans were negative. The doctor asked if I wanted to get a spinal tap done, to make sure that it was not Meningitis. I opted out of that because, I did not have a fever.

The last weeks of December - I was having tingling in my face, hands and neck. I had a burning sensation in my neck and shoulders. I finally saw my primary care doctor and a Neurologist. He ordered a MRI/MRA of the neck ( only neck ) and told me that he suspected a pinched nerve. ( wish that was the case! )  The MRI/MRA was completed and my neurologist did not see anything on the scans. All he said was that my muscles looked tense.

January, 2010 - Over the following three weeks I developed what I learned later was "ataxia." Before I was unaware and said that I had felt unbalanced. I had multiple trips to the ER, and of course there was nothing found there. My body felt weak at times and the tingling had worsened.

Decided to see my primary care doctor again and a second neurologist. The both agreed that I should get blood work done, and an MRI/MRA of the brain with contrast.

The tests came back negative and my cbc was okay.

I was then dismissed for awhile and over the course of January into February I had episodes of the horrid pain at the top of my head. Many times I had to take a trip to the ER. My parents finally insisted that the hospital admit me. The ER doctors agreed because my symptoms were debilitating. My Neurologist ordered EXTENSIVE blood work and more MRIs. I will post the MRIs later on. Results below.

MRI of brain - normal
MRI of cervical - normal
MRI of thoracic - normal
MRI of lumbar - normal

Spinal Tap results - normal

Blood work came back with abnormal antibodies within the Lyme disease test. b12 deficiency and severely low vitamin D deficiency. I did not have pernicious anemia. Levels were


I went then to an Infectious disease doctor, he did extra test and told me that I did not have Lyme. He said that he saw in my blood at SOME point I had Ehrlichiosis is a tickborne^[1] bacterial infection. He said that they could not tell when I was exposed and said that it doesn't cause long-term effects. He gave me doxycicline, just to try it.


March 2010 - I was getting really depressed and anxious. I just wanted to know if I'd ever feel better. I did start getting b12 shots and took vitamin D supplements as prescribed. I felt I little better after taking the doxy but the symptoms came back.



I had on-going pain and numerous episodes that resulted in ER visits, only for them to send me home with painkillers and the number to a few psychiatrists. 

Introduction.

Hello, everyone. My name is Megan. I am a 21 year old who has been suffering from undiagnosed symptoms for over two years. It has truly been a difficult journey for me. I made this blog not so much to find out what's wrong with me ( giving up for a little ), but to reach out to others who have never been diagnosed or are in chronic pain. After seing 5 neurologist 1 being a neuro-ophthalmologist, an infectious disease doctor, orthopedic surgeon, a sports medicine/spine doctor, a rheumatologist, a dentist and an oncologist. Maybe it is just " all in my head? " No! I know my body and I know how I felt before the on-set of symptoms.

An actual mri of my brain, I'll add more close-up ones later. You can click to make it bigger.

My "head pains" are hard to describe and they aren't always the same every "episode."
They are persistent with random jabs of short pain. Was never diagnosed with migraines as my symptoms are Atypical.

Some of my symptoms ( short story ) : Here they are in Depth http://all-n-your-head.blogspot.com/2011/12/symptoms-in-depth.html

• tingling in my face, scalp, neck, hands.
• burning in hands and neck
• head pains and neck pains/ headaches
• fatigue
• straining to use the bathroom hurts, sneezing, coughing..even singing
• ears popping
• facial pain
• shock like sensations, pricks
• visual disturbances
• sometimes sore throat, feels weird when swallowing
• base of skull soreness
• sometimes when I move my neck a pain shoots up to my head
• sometimes jaw pain and tickling in ear with accompanied ear pressure

My History of accidents and 2 surgeries. I have asthma. 

Broke my ankle riding a bike.
Broke my wrist on roller blades.

In 2000, I was in a horseback riding accident. Fell off and suffered a compound-fracture to my left arm. Had to be flown to John Hopkins Hospital air vac. Had pins and a cast for 11 months. So lucky to even have my arm.

I had my appendix removed in 1999.  



I know how it feels to be afraid and have anxiety over health. All the tests that had/have to be done, are hardships in itself. Not only do I suffer from pain but, the fact that I don't know why...drives me crazy! I've been called crazy and been judged and treated in many hurtful ways due to this...Chronic pain can truly change the person you are. It's sad and its hard to deal with and keep healthy relationships. I don't want to give up, I think making some friends with the same issue would be very beneficial.