Brain Fog

Feels like life is moving but I'm standing still..my brain just musing passively...parusing nothing.

Not a good time to make decisions although I can still laugh at jokes
which are all I want to hear.  The rest is mumbojumbo.

Someone else make the coffee, fix the dinner, make the drinks.  I can only do what you put in front of me.  Even then don't expect my best.

My get up and go has got up and went
And left what you see here.  A shell.  Inside is squishy jelly.  No brain cells here.

Just an ameba.  The most basic form of life.  My shell.  My armor. 
Guarding nothing.  Nothing but squishy jelly.  What a joke.

I'm not laughing, though I'd like to be.  Not smiling, though I'd like to be.  Not feeling, though I'd like to be.  Empty.  So empty.

Such is brain fog.  I didn't lose my keys.  I didn't forget to feed the dog and cat.  I don't know what I forgot...such is real confusion.  To have to put my day plan into others to take the first move.  My moves are secondary.  Time to jump up?  Just say so.  I can do that much.

There's a big open space like a field in my mind
And I'm on it grazing.  Nothing else.  The heat of the sun hits my back and feels good while it brightens up my skin.  The blue sky goes on forever.
I'm but a speck in a vast wilderness of green prairies and flatlands
The picture perfect clouds roll slowly by my emptiness
They all look the same.  Where is my voice?  My constitution? 
Why is my spirit so lost?

I'll have to ask the fog itself.  Release me and give me back my thoughts, I say.
They're mine and only for me.  What good are they to you?  Only I can turn them into meaningful words and actions.

Such is brain fog.

The windows in my apartment are covered not once but twice with blackout drapes.  No sun, yet the artificial light luminates the room enough for me to be fooled into thinking it's daytime.  What else is fooling me besides the light?

The tv chatters, the phone rings, the alarm goes off, the printer hums and the dog barks.  Even the keyboard clicks as the words hit the page, yet my mind is quiet.  Someone else attends to it.  All I can do is watch.

I'll jump when you tell me.  Put the words in front of me so I can reach them and I'll press the keys.  Free my entrapment, break the armor, expose the jelly and the joke.  I can face them.  At least I have that function.  That is true spirit.  That is my lifeblood.  That is what is left when the rest gets foggy.   My essence is safe. 

The fog is only a cloak hiding behind my double black out drapes.  It is I who fool the fog with my artificial  light.  I decide to make it daytime and my fingers press the keys with their orders from the very brain that thought it was incapable just a moment ago. 

The clouds now take shapes along the skyline and the blueness of the afternoon sky overwhelms my senses. 

Such is brain fog lifted.

I saw a NEW RHEUMIE today!!!!!!!!!!!!!!!!!

ent to see my new rheumie today, I'd been waiting months since I fired the last one.

I like him.  He wears a cute little bowtie.  He said it meant something that I have immune complexes interfering with my ANA labs lately and is sending me to an immunologist.
He said my kidneys need a biopsy to make sure they are ok now and really in remission.  He said with all my issues I need more help than just high doses of prednisone and put me on cellcept.

Bingo.  He hit my 3 main concerns all on his own.  Now THAT's a doctor.  The other one can go join his other little duck friends ...quack quack quack...  ;)

I'm so glad I went.  It was over an hour away and I left home at 6am without coffee.  I'm trying to catch up with that deficiency now.  Blessed be caffeine.

I should have switched doctors sooner!  Please if you are not comfortable with your doc or your treatment, see another one.  It doesn't mean the next opinion is the RIGHT one, but it may open some doors for you that previously were closed!  Do it!  I have a very good feeling about this one!!!

Ode to Decompression Surgery

There once was a girl with a whole lot of curl

and feet that just weren't right   

so one day she did scream

to her docs it would seem   

she really just wanted a fight.    

Then one kind ole doc  

looked at his clock  

and said we'll set up a room where we'll serve                

and we'll cut out your bad nerve...   

and take your pain all away.     

In other words my nerve entrapment in my right foot hasn't stopped for FOUR agonizing days and is sucking the life out of me so my neuro and pain doc r trying to get me admitted for surgery.      ........and thats that!                          

I eat enough pills to be FULL!

 This is a whine.  Every darn morning and afternoon and night I have to take the pills and need food with them.  Might not sound like a lot to you, but 24 pills a day (remember lupus is SYSTEMIC) but it's a real pain in the ass.  I'm organized, oh yeah, I have a vitamin thingy storage bin to take them from, but still it's a huge chore.

I'm tired of it.  In addition to the 24 meds are the vitamins and supplements.  It's just too hard.  I've always been good about it but the sick of it feeling is cumulative.  I'd like to chuck em ALL.

I can't though.  Have to truck on.  I will not have my family think I didn't do everything humanly possible to be in decent health.  Wish there was a better way... I don't know how my lupie friends do it day after day!

To catch up with my health...It was likely I had a tia a month ago, there is a small blockage in my right carotid artery and my MRI shows an abnormal occipital structure, whatever that means.  I missed my cardiologist appt and have to reschedule.  Bad move.  I see an opthamologist next week for my retinopathy and plaquenil check up.  I go back to the neurologist after I make my cardiologist appt.  I had a nerve block in my feet that did not work on the compression under my fourth toe right foot that feels like someone is lighting a match under it over and over 24/7.  I have blood vessel inflammation and pain in the occipital nerve that gives me a headache and puts me off balance.  Gives me weird feelings in my head.  I don't like it.  The other day my neck hurt so bad I couldn't turn it and when I went too far to the left it felt like it would snap off.  My cervical spine is much worse and I need to see an orthopedic surgeon.  I guess...  Too much.  It's just too much somedays.

The NERVE of those Occipital Nerves!

 As you may already know (per my complaining) I have multiple cranial neuropathies.  One is a headache that puts me extremely off balance and causes my neck and head many problems, like leaning toward the left, extreme pain, immobility and weird feelings in my head.  There is a connection between cervical spine problems and the occipital nerve.

One cause of chronic headaches that is often overlooked is occipital neuralgia. Occipital neuralgia is a type of headache that generally begins in the neck and then spreads up through the back of the head, causing throbbing, piercing pain. Often the scalp becomes tender, and sufferers may experience pain behind the eyes and become sensitive to light. Many people describe the pain as migraine-like, and the acute symptoms of occipital neuralgia can be at least as severe as those caused by migraine.

Occipital neuralgia is caused by injury or irritation to the occipital nerves, which travel up from where the spine connects with the neck to the back of the head. Trauma to the back of the head or nerves compressed by swollen or tight neck muscles are the most common causes of this type of headache. Pressure on the occipital nerves can result in a worsening of symptoms, and physical tension often triggers an attack.

Diagnosis of occipital neuralgia can be difficult, and is usually made based on clinical presentation alone. Often, pressing directly on the area over the nerve will cause pain, and this reaction is generally used as a first step in making a diagnosis. Some doctors will attempt to diagnose the condition by injecting a local anaesthetic into the area of the occipital nerve. Relief from pain after this procedure is very indicative of occipital neuralgia.

Other conditions that may cause or worsen occipital neuralgia include osteoarthritis of the upper cervical spine, cervical disc disease, tumors, diabetes, gout, inflammation of the blood vessels, and various infections. When a cause can be identified, treatment is aimed at the underlying condition. For most patients, no underlying disorder is found, and treatment is mainly symptomatic.
Treatment most often includes a combination of rest, heat, physical therapy, and anti-inflammatory medications. If those treatment options fail, local nerve blocks can be injected into the area of the occipital nerve and may provide pain relief for many people. For those dealing with chronic and severe pain, surgical intervention is a possibility, but is usually regarded as a last resort.

The headaches and inflammation of the muscles in the neck caused by chronic occipital neuralgia can be disabling if left untreated. Occipital neuralgia, especially when secondary to another condition, may eventually resolve on its own. The majority of the time, however, it is a lifelong condition requiring treatment by a neurologist and long-term use of pain and anti-inflammatory medications.

Crumbling and Grumbling (my teeth, that is! lol)

Hi guys!  I'm doing good, coming out of the lupus funk I've been in (tired and cranky, lol) but my back teeth on the top are crumbling.  Falling apart and falling out.  I had a gap back there where my filling fell out (was there about 30 yrs or more I guess) and it was getting worse and worse over the last 6 months but now the  tooth next to it is chipping (crumbling) away.  I've never had much trouble with my teeth till now so I'm a little nervous.  At least it's in the back.

Anyone else have problems with their teeth?  Is it from lupus?  I know gums are connective tissue, but I also know not everything is because of lupus (unless it's my fault of course and then I can freely blame lupus, hahahaha)  I know many lupies have problems with teeth and their gums from Sjogren's and dry mouth.  I'll keep posting as I go, time to go see a dentist, YUK!  

Here's some info I found about teeth:

The accumulation of dental plaque and tartar is usually what causes gingivitis, and it's almost always the result of inadequate brushing and flossing.
If poor oral hygiene promotes the overgrowth of bacterial plaque, changes in the composition of the plaque occur. The bacterial balance shifts over to gram negative anaerobic bacteria, which are responsible for inflammatory diseases.

The bacteria also invade the crevices between the gum and tooth (sulcus) and infect the periodontal tissues. These bacteria that form dental plaque and tartar release toxins that stimulate the body's immune system to over produce powerful infection-fighting factors called cytokines.

The immune factors of the body, in their effort to fight the infection, attack the person's own infected cells and periodontal tissues. This way, the supporting tissues of the teeth - gums, connective tissue and alveolar bone - are destroyed.

25% of lupus patients develop Sjogrens Syndrome which is characterized by autoimmune attack on the tear producing lacrimal glands in the eye and the saliva producing glands in the mouth which results in a sensation of dry eyes, sometimes accompanied by a feeling of sand, grit or gravel in the eyes, and dry mouth. The reduction in saliva production is unhealthy and can promote dental decay as saliva has the function normally of cleaning teeth and also provides antibodies which can protect from bacterial damage to teeth and gums. Persons with this condition need excellent dental hygiene, should avoid smoking, receive frequent dental cleaning and checkups and can use sugar free lozenges to promote residual saliva production. There are two prescription medications that can be used, salagen/pilocarpine and evoxax that promote saliva formation.

Lupus and related conditions can cause the gums to recede, making them more vulnerable to infection and potentially exposing the lower parts of teeth which aren"t covered by thick protective enamel. For this reason, lupus patients should take extra care of their gums and, if possible, use an antibacterial mouthwash twice a day. A dentist may be able to cover exposed areas of lower tooth with artificial enamel. A patient in this situation should also avoid sugary fizzy drinks and acidic fruit or drinks which are especially damaging to vulnerable areas of the tooth.

Mini Strokes Not So MINI!

Mini Strokes Are Not Mini!

If you have a systemic disease like lupus, you’ve heard the word TIA before.  Did you Ever Worry if You Might Have Had a small stroke, also called a tia, transient ischemic attack ?

 TIA occurs when blood flow to a specific part of the brain is temporarily decreased. Even though a TIA occurs in the unseen reaches of the brain, TIA symptoms can be easy to spot. As a general rule, all the symptoms appear suddenly, and often there is more than one TIA symptom present at the same time. Therefore, a TIA can usually be distinguished from other causes of dizziness or headache.  A TIA is serious.  A TIA is a RED FLAG that can save your life!   It is a warning of an impeding stroke.  It is not to be taken lightly.  You may be having a stroke and have only a small window of time to get to the hospital and be treated.  It is not a condition in itself, it is a symptom and sign that you are going to have a stroke.

Is there anyway to tell if you have had a TIA after the symptoms subside?

Yes and No.  Almost always, the symptoms and signs of a TIA will have gone away by the time you get to the hospital. A TIA diagnosis may be made based on your medical history alone.  There are tests that can be done to determine why and if you had a tia episode or stroke.  EARLY INTERVENTION of a TIA OR STROKE in a hospital CAN and DOES SAVE LIVES!  Call 911 without delay!!!!

Exams and Tests

The health care provider will do a complete physical exam to check for heart and blood vessel problems, as well as for problems with nerves and muscles.

Your blood pressure may be high. The doctor will use a stethoscope to listen to your heart and arteries. An abnormal sound called a bruit may be heard when listening to the carotid artery in the neck or other artery. A bruit is caused by irregular blood flow.

Tests will be done to rule out a stroke or other disorders that may cause the symptoms.

•             You will almost always have a head CT scan or brain MRI. A stroke will show changes on these tests, but TIAs will not.

•             You will have an angiogram, CT angiogram, or MR angiogram to see which blood vessel is blocked or bleeding.

•             You may have an echocardiogram if your doctor thinks you may have a blood clot from the heart.

•             Carotid duplex (ultrasound) can show if the carotid arteries in your neck have narrowed.

•             You may have EKG and heart rhythm monitoring tests to check for irregular heartbeat.

Your doctor may do other tests to check high blood pressure, heart disease, diabetes, high cholesterol, and other causes of and risk factors for TIAs or stroke.  Your doctor may use these tests to check for hypertension, heart disease, diabetes, high blood lipids, vasculitis, and peripheral vascular disease.

Other Tests to diagnose a TIA may include:
* CBC and PT tests to rule out a blood disorder
* Head CT scan or cranial MRI
* Carotid duplex (ultrasound)
* Echocardiogram
* Cerebral arteriogram
Additional tests and procedures may include:
* Blood glucose
* Blood chemistry
* Serum lipids
* ESR (Sedimentation rate)
* Tests for syphilis
* ECG
* Chest x-ray

Specific TIA Symptoms

For a person having a TIA, the symptoms will vary depending on which part of the brain is affected.

 Examples of specific symptoms include:

•             Sudden numbness or weakness of face, arm, hand, or leg, especially on one side of the body

•             Sudden confusion

•             Trouble speaking or understanding speech

•             Sudden trouble seeing in one or both eyes (such as double vision, blurred vision, or blindness)

•             Sudden trouble walking, dizziness or lightheadedness

•             Sudden loss of balance or coordination

•             Sudden severe headache with no known cause

•             Vomiting

•             Loss of consciousness

•             Spinning sensation (vertigo)

•             Sudden collapse

•             Seizures (in a small number of cases).

If you suspect you or someone you know is experiencing one or more of these TIA symptoms, do not wait for the symptoms to worsen or improve. Call 911 immediately. It is impossible for you to know whether these are symptoms of a TIA or signs of something more serious, such as a stroke.

A TIA is different than a stroke. After a TIA, the blockage breaks up quickly and dissolves. Unlike a stroke, a TIA does not cause brain tissue to die.

The loss of blood flow to an area of the brain can be caused by:

•             A blood clot in an artery of the brain

•             A blood clot that travels to the brain from somewhere else in the body (for example, from the heart)

•             An injury to blood vessels

•             Narrowing of a blood vessel in the brain or leading to the brain

High blood pressure is the number one risk for TIAs and stroke. The other major risk factors are:

•             Atrial fibrillation

•             Diabetes

•             Family history of stroke

•             High cholesterol

•             Increasing age, especially after age 55

•             Race (African Americans are more likely to die from stroke)

People who have heart disease or poor blood flow in their legs caused by narrowed arteries are also more likely to have a TIA or stroke.

Treatment

The goal is to prevent a stroke.

If you have had a TIA within the last 48 hours, you will likely be admitted to the hospital so that doctors can search for the cause and observe you.

High blood pressure, heart disease, diabetes, and blood disorders should be treated as needed.

You may receive blood thinners, such as aspirin, to reduce blood clotting. Other options include dipyridamole, clopidogrel, Aggrenox or heparin, Coumadin, or similar medications. You may be treated for a long period of time.

Some people who have clogged neck arteries may need surgery (carotid endarterectomy).

Outlook (Prognosis)

TIAs do not cause lasting damage to the brain.

However, they are a warning sign that you may have a true stroke someday. More than 10% of people who have a TIA will have a stroke within 3 months. Half of these strokes happen during the 48 hours after a TIA. The stroke may occur that same day or at a later time. Some people have only a single episode, and some have more than one episode.

You can reduce your chances of a future stroke by following-up with your health care provider to manage your risk factors.

When to Contact a Medical Professional

A TIA is a medical emergency. Call 911 or another local emergency number right away. Do not ignore symptoms just because they go away. They may be a warning of a future stroke.

When to Contact a Medical Professional

A TIA is a medical emergency. Call 911 or another local emergency number right away. Do not ignore symptoms just because they go away. They may be a warning of a future stroke.

What a PAIN in the NECK!!!!!

Hi T.  Woke up in the middle of the night with my neck twisting and locking up again.  These spasms are the worst.  I yelled outloud and while my head was locked sideways (accessory nerve damage-cranial nerve 11) I told John to get the camera.  By the time he had it and the lights all on he realized I had already gone back to sleep.  LOL  hahahaha  "well, shiver me timbers...ach ack ack"

When I got up it started up again but the worst of it was my left eye.  It was way at the end of the eye so you could see a bunch more than you should of the whites of my eye.  To me it felt like my eye was loose and the muscle was just bouncing the eye around.  Believe it or not the feeling from my brainstem to the front of my neck was WAY worse then worrying about my stupid eye.  I get so mad my neck and jaw and head are going to get stuck that way and I won't be able to straighten it up and I'll have cervical dystonia forever and be deformed.  (with tonus)

It's amazing what nerves can do to the body and because these control neck muscles it's a real pain in the neck.  Get it?  hahahaha  I made another funny.  I shall have to have a long chat with my neurologist after I see the cardiologist about my carotid artery. 

My question has always been WHY this damage to my nerves?  I think I'll start getting some answers after I see the opthamologist.  Real answers.  He can do an orbital MRI and get a nice 3D close up shot.  I'm really excited about that.  Is it really lupus damaging the myelin sheath?  I personally don't think so.  I've got that pain and squishy feeling right in my brainstem on the left and I believe herein lies my problems.  There's something going on in there and it's affected all the cranial nerves which is why I have intermittent problems with so many of them.  Mainly, 5, 7 and 11.  I think the carotid artery is involved but not like they think it is.  I do not think I have a heart problem of any kind.

Sometimes a hunch is right.  Now to get the docs to listen and have the right tests.  I'm getting somewhere finally.  Yeeee Haaaaa!

"We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty."

Maya, Angelou, US author & poet

EYE Yai YI !

hehe...like the sub line?

My MRI came back as abnormal orbitals.  The EYES have it...(OH I made another FUNNY)...

Hahaha...I know I already have retinopathy, but I do think this has to do with the problems seeing I have been having lately, problem with details, my nighttime vision is GONE and colors don't look as bright.  BAD STUFF for a graphic designer, lol.  I'll just turn up the monitor contrast!  There ya go.  Fixed.

I'm not jumping ahead and hitting the panic button.  It could be from my possible TIA last month.  It could be optic neuritis (lupus) it could be something else.  For quite awhile I've had this weird feelings behind my left eye, like it's filling up with heavy hot liquid.  It's probably somehow exactly what's happening physically.  It lasts about 2 minutes or so and then my eye vessels break and eye goes red.  I thought it was related to my cranial nerves but EYE (haha did it again) think it might just be my EYE.

LOL  I have not been drinking..haha I have no idea why I'm so silly today..???
I also have TN.  I have hfs during TN attacks that linger about 4 wks afterwards lowering in intensity as it goes.  I don't have an answer why I have cranial neuropathies btw.  Not yet.  (I also have systemic lupus which is speculated is destroying the myelin sheath on my nerves)

Anyway like many before me, I've gone screaming into my neurologists office before!  LOL  After an attack that involved all 3 branches of the trigeminal nerve I found out why tic deloroux is called "the suicide disease".  It is unfathomable pain.

My neurologist specializes in migraines and MS and dx'd my PN (peripheral neuropathy) about ten yrs ago and I've been seeing him ever since.  He is willing to learn and sends me usually for the appropriate tests, MRI's, cartotid ultrasounds (last month TIA scare and sudden outrageous headache) so I feel in pretty decent hands so far.  He also is not familiar with the damage lupus can do as a connective tissue disease and autoimmune one, but he's hanging in there with me.

For anyone who says to go see a neurologist who specializes in cranial neuropathies, GOOD LUCK finding one.  I'm in Phoenix and so far NO LUCK.  I know of neurosurgeons from the hfs site, etc, but not a one neurologist familiar with cranial neuropathies and lupus.  Please feel free to let me know if anyone knows of one.  (then I have to figure out if he's in network)

My MRI came back today with orbital abnormalities.  I have retinopathy and have been having weird eye symptoms lately.  A feeling of hot fluid behind my left eye and then the blood vessels pop and my eye goes red.  My vision is worse at night, I'm losing some detail in my sight and my eye muscles hurt.  Does anyone know if this is cranial nerve related?  Or an eye thing?

Anyway I see an opthamologist and retinal specialist end of this month. 

Thank you for listening and your time.

Julie
TN, hfs, cranial neuropathies (GN, bells palsy (recurring), BMS (burning mouth syndrome) vagus nerve issues and accessory nerve muscle tonus with TN attacks, Phoenix, AZ

(these are excerpts from my emails today)