It’s Back

Tags

iih, ptc

It has been 5 days since I had a lumbar puncture to relieve some of the pressure and fluids. With the exception of the actual day of the procedure, I felt great for all of 4 days. The numbness in my face and neck is back. My hands feel like they are full of pins and needles trying to escape the very skin holding them in. The pressure behind my eyes feels like there is a tiny little being in them trying to force his way out by pushing on them. My head feels like it is stuck in a vise that keeps turning.

Yet here I sit at seven in the morning typing away my grievances while my daughter is getting ready for school. As awful as I feel right now I have to see the good, the bright, the functional side of things. There is no dizziness, no nausea, no pain, no headache. There is nothing that is debilitating me so far today. Just disappointment that the symptoms are returning so quickly.

So I will march on today until I can’t, then I will lie down and rest and wait until tomorrow to get up and do what I can. I am coming to realize that this may not be how I saw my life, but it is what it is and today I can smile and be ok with that. Tomorrow is tomorrow and I can deal with that when it comes.

Making Them Understand

Tags

ptc iih

This is only the beginning of the journey for me, and I have already learnt so much by talking with others who have been going through this longer then me. The toughest part of this is not the pain; it is trying to explain what is happening to people around you when you look ok. It’s hard to explain that you can’t cook dinner because you have a headache that is so bad your toenails feel as though they are being ripped off one at a time.

My husband is still trying to wrap his head around this. He is dealing with his own medical issues, as he is a disabled gulf war veteran. However, his inability to understand me hurts the most. Let me give you the back-story. About 12 years ago, my husband health started to go down hill. He went to doctor after doctor trying to find out what was wrong with him. They kept telling him it was all in his head. While at home, he would try to keep up with his job and help around the house. He wasn’t sleeping well because he kept being woken up by what he called brain lightening (we found out later that his synapses weren’t fireing right, which caused this effect.) He couldn’t even mow the lawn with out his legs giving on him. (I actually found him being dragged by the mower once.)

It took them almost a year to diagnosis him, the whole while everyone told him” you look fine”

So when I say there is something wrong with me and from doctor to doctor until they diagnose me and he says” it’s all in your head, you wanna be sick”  it hurts. He was the one person I expected to stand by me and help me deal with the doctors, the kids, and my parents.

I had a lumbar puncture yesterday, it was awful and for a few moments I thought I would rather have the symptoms and lose my eyesight then endure this ( feel differently now), I was sent home with clear decisive instructions.

Stay Flat On Your Back.

Do Not Lift Anything.

Do Not Bend Over To Pick Anything Up. 

My mother in law had to pick me up because he was still sleeping at one in the afternoon.

The first thing I did when I got home was to put comfortable clothes on and wake him up. I handed him the doctors’ instructions and went out to lay down on the recliner. He never came out of the room! He went back to lie down because he was tired. The kids came home, wanted this, and wanted that, they made their own dinner and cleaned up afterwards. When my husband came out, he said he was feeling like he just needed to be left alone. He didn’t once ask me how I was feeling, didn’t once ask if I needed anything. He just acted as if I was ok and nothing happened. Yes, I am angry, BUT I also understand that with his illness on top of the PTSD he has not yet come to terms with what is happening with me. He has to process everything in a strange detached way.

Does it help the hurt? NO

Does it help the anger? NO

Do I understand? YES

Do I want the world to be mad at him? NO

They why? Why did you tell us you ask? Because holding things in is not healthy and who am I going to talk to? This blog is two fold; One for me to share what I am going though and raise awareness and Two because Blogging helps me sort out what I am feeling and I have come to some shocking realizations.

I was so mad at my husband when I started writing this; I wanted to tell him to go spend a few days at his mothers’ house. Now I am writing and see it in a different light. I can see it though his eyes and mom’s eye, and the kids’ eyes. Does it fix it? Does it make the pain any less? Does it make me feel any better?

A little. I know it takes time for them to understand what I myself and learning and trying to understand.

~Thanks for reading my rant. I am going to go hug my family now, and maybe explain this to them again.

How I explained

This video helped me explain what I have and what it is like for me to my family. I hope it helps you understand as well as anyone you have to talk to.

What is it?

Tags

cerebrospinal fluid, iih, pseudotumor cerebri, ptc

What Is Pseudotumor Cerebri?

Pseudotumor cerebri is a condition in which the pressure around your brain increases, causing headaches and vision problems. The name means “false brain tumor,” since its symptoms are similar to those caused by brain tumors. It’s also known as idiopathic intracranial hypertension. It mainly affects women who are between 20 and 50 years old. This condition is treatable, although it can return in some cases.
The exact cause of this condition is unknown, though it may be associated with having too much cerebrospinal fluid in your skull. This fluid, which protects your brain and spinal cord, is normally absorbed into your bloodstream. Pseudotumor cerebri may occur when this fluid isn’t fully absorbed, which causes it to build up. This leads to increased pressure in your skull.

Symptoms:

Headaches
A common symptom of this condition is a dull headache that starts behind your eyes. These headaches can become worse at night, when you move your eyes, or when you first wake up.

Vision Problems
You may also have vision problems, such as seeing flashes of light or having brief episodes of blindness or blurred vision. These problems can become worse as the preasure keeps increasing. This can lead to double vision or permanent vision loss.

Other Symptoms
Other symptoms include:
ringing in your ears
pain in your neck, back, or shoulders
nausea
vomiting
dizziness

How Is Pseudotumor Cerebri Diagnosed?

Eye Exam
Your doctor will check for swelling of the optic nerve at the back of your eye. Your vision will also be tested to see if you have abnormal blind spots.

Imaging tests
Your doctor may perform a CT or MRI scan of your brain to look for signs of spinal fluid pressure. These scans can also be used to check for other conditions that could be causeing your symptoms.
A CT, or computed tomography scan, combines several X-rays to make a cross-sectional image of your brain. An MRI, or magnetic resonance imaging scan, uses radio waves and magnets to produce a highly detailed image of your brain.

Spinal Tap

Your doctor may also perform a spinal tap, or lumbar puncture, to measure the pressure of your spinal fluid. This involves placing a needle between two bones, or vertebrae, in your back and drawing a fluid sample for testing.

Treatments:

Medications
Medications can help control or reduce the symptoms of pseudotumor cerebri. Your doctor might prescribe:
migraine medications to provide headache relief, such as tryptans like sumatriptan (Imitrex) and naratriptan (Amerge)

glaucoma drugs, such as acetazolamide, which cause your brain to produce less cerebrospinal fluid. These drugs can cause fatigue, kidney stones, nausea, and a tingling sensation in your mouth, toes, or fingers.

diuretics, such as furosemide, to make you urinate more often. This causes you to retain less fluid in your body, which helps ease the pressure in your skull. These may be used in combination with glaucoma drugs to make them more effective.

Surgery
Your doctor may recommend surgery if your vision becomes worse or to drain excess cerebrospinal fluid. Surgical procedures include:
optic nerve sheath fenestration, which involves cutting the membrane around your optic nerve to let extra fluid out. According to the Mayo Clinic, it’s successful at relieving symptoms more than 85 percent of the time (Mayo Clinic, 2012).

Spinal fluid shunt, which involves placing a thin tube in your brain or lower spine to drain extra fluid. This procedure is usually done only in severe cases. According to the Mayo Clinic, it has a success rate of more than 80 percent (Mayo Clinic, 2012).

The Beginning

Tags

iih, pseudotumor cerebri, ptc

How it all began…….

Around Thanksgiving (November 2013), I started having headaches, and blurry vision. I thought at first because they were at night I was just tired. The headaches started to get worse and the blurry vision continued, but I also noticed other things happening. My eyes hurt, they felt like some one punch them and I was walking around sporting 2 black eyes, but there was nothing there. Then night driving became so difficult that I just didn’t do it anymore. Eventually I thought I needed to get new glasses so I set up an appointment for January 3, 2014 with Vision world now known as Vision works. Sure enough, I needed new glasses, but the doctor also sent me to see an Optho-neurologist because my optic disks looked slightly inflamed.

A week later and a bunch of eye tests and eye pictures later I am told that I have pseudo tumor cerebri (PTC). Scary word that makes me call my doctor and request an appointment. A week later and a 4-hour wait in the doctors office I am off for tests, specifically and MRI and an MRA.

A Magnetic resonance imaging (MRI) is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body.

A magnetic resonance angiogram (MRA) is a type of magnetic resonance imaging (MRI) scan that uses a magnetic field and pulses of radio wave energy to provide pictures of blood vessels inside the body.

A Week after the tests are done I am once again waiting in the doctor’s office to get the results. I have come to the conclusion, that my doctor (who is just a family doctor) is a nitwit, a true blue dumb*ss. By this point in everything I have done my research on what exactly Pseudo tumor cerebri is. By definition, it is a false tumor in the brain. Your brain has fluid in it for protection, this fluid is created and distributed and then reabsorbed. For someone with PTC, the brain just keeps filling up with fluid. None of it get’s reabsorbed into the body, so that every nook and cranny is filled with water, and then more water tries to fill up and there is not outlet for the water, which puts pressure on your nerves and blood vessels. It causes your optic nerves to swell, which can damage your eyesight. There is no Tumor; someone with PTC is symptomatic of having one though.

 Now that you know what PTC is, you can understand that when I say my dr. is a nitwit I mean it. He told me there is no tumor, so you don’t have PTC, you have swelling, and that means you have been suffering from sever sinus infections all your life. I have never had a sever sinus infection, that I know of, in my life. Yes, I have had a regular sinus infection; I think just about everyone has, but never anything more. No only that but hello Pseudo tumor = false tumor.

 I fought with my doctor for 3 weeks to get into see a neurologist. With that first meeting, I now am on a medication that is supposed to help but has side effects that are as bad as, if not worse then the symptom of PTC.