Just getting worse lately.

In A LOT of pain lately.

Seing floaters.
Neck pain.
Teeth and jaw pain is at its worse.
Tinling and numbness in my face.
Feel like I just want to close my eyes all the time.
Feel like I have NO energy.


I just want to live. There are still a lot of things that it could be caused by. Some people from seing my MRI's have suggested that it still looks like possible crowded posterior fossa.( tonsils look a little pegged  ).....

I have realized and thought back that when I was 9/10 I had horrible headaches. I never got it checked out and used hot washcloths on my forehead. For many years they had gotten better. I think during some time in highschool I also felt a lot of pressure in my head. Around that same time I think in 2004, It was difficult for me to sing. I could not sing high or strain too hard, I never thought about it being a medical issue.


Lately, I take deep breaths and my head hurts. Ugh, I am trying trying to stay positive that I will figure out what it is that is giving me so much pain.



Still could be -

• TMJ related. teeth related.
• Chiari Malformation.
• CSF leak.
• Cervical Khysosis. 
• Pagents Disease.

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.