The Continuing Saga of 'Is It All in My Head or Am I Just Getting Old?'

2 August 2010

The exercise is continuing! I am now on day 19 of 21! Following the Family Circle Walking Challenge and I have been able to keep up without any real issues. Also doing the ab crunches and have upped that number to 35 for this week. It's all good.

I saw the neurologist and had to go for a brain MRI. It was not nearly as bad as I imagined it was going to be! My cousin Lizzie told me to have them put a towel over my face and this helped so much. There was a  cool breeze inside the tube. Rather than allow the noise to freak me out, it sounded like a cacophony of musical notes, much like an angry Mahler piece being played by a sad tormented machine. Of course, the anti-anxiety meds helped me through it all. My husband says I babbled all the way home, but in all honesty, I do not remember this. I do remember, though, that my babbling caused him to have a headache!!

The results came back the next day. The positive result was that the MRI was negative. Completely negative other than I do have a brain!! There was not even any evidence of my brain aging...a real fear given my mom's condition before she died. Great, great news. The downside, I now need an MRI of my spine and neck as well as an ultrasound of my carotid artery. They really do not know what is wrong with me or why I am having these headaches. But, in order to have these tests, I have to no longer be taking the Prednisone (yippee!!) so I am getting weaned off that now.

For those of you who have only had a burst for asthma or a very short regimen of this medication, when you are on it for more than 40 days, there is a weaning off process because taking this med, stops the adrenal gland from working. The adrenal gland needs to be jump-started back to work. So, my doctor has me going from 30mg to 20mg and starting tomorrow I am down to 10mg for four days and then I get four days at 5mg, and then I will be done, at least for now. I also discovered that another side effect of this process is the continued feeling of acute anxiety and rebound headaches!

16 July 2010

The only good thing about all of this is that I am on an exercise roll. Completed the fifth day of aerobic exercise in a row today, in addition to doing ab crunches. I may be fat, but underneath this chubbiness, muscles are forming and getting into shape. Exercise helps to take the edge off the meds.

Am also cooking for my family, lunching with my girlfriends (from school, my life as a twins' mom, neighbor and new friends from FV), as well as cleaning out the dysfunctional disorganization that is my house. (I should post photos of before and after!)

The Prednisone is making me feel as though I want to crawl out of my skin. It is the most uncomfortable anxiety-provoking feeling. My heart beats so rapidly and it will not slow down. It is especially bad late at night as I lay there waiting for and willing sleep to pass over me, and help me to get some respite from this journey of an unknown destination. The current solution is Lorazipam, which definitely is curbing the anxiety. Good grief, my pill intake looks like an old lady's...perhaps because I am approaching my dotage??

Sed rate came back. Initially it was at 34 (normal is 0 to 10) and now it is at 4. Does this mean the Prednisone is working? Does this mean it is TA and the treatment is working? Does this mean the whole headache could have been from some unrelated cause which doctors like to blame on a virus of unknown origin?

I am seeing the neurologist on Monday at 8:30. What will be the result? More questions or perhaps some answers? My one doctor told me the best possible result of all the tests is that they find NOTHING! That way it becomes a little House mystery. Nothing good, nothing bad. One thing in my favor is that the initial headache spans more than one sphere of the brain. Apparently this is a good thing.

15 July 2010

Big day on the doctor front. Went back to the eye doc today. Pressure is good...blah, blah, blah. Now he seems to be getting on the TA band wagon by telling me the biopsy does not always give a positive result and even though my blood vessels are not bursting in my right eye, TA could very well be the cause.

Turns out that a year ago, the vision in my right eye was 20/20 (my left and stronger eye is 20/15). When I saw him in June it was 20/40. The change was virtually overnight. Now, with corrective lenses, my sight is only at 20/25. The scariest aspect about this journey into the unknown is how quickly my vision changed.

Intense numbing headache for weeks, not like a migraine, odder, weirder, numbing, and then you wake up one morning and your vision is blurred and they cannot really fix it.

I can honestly say I am scared.

13 July 2010

Went back to see my doctor today. She is keeping track of my progress or lack thereof, and she is insisting I get to a neurologist. So not looking forward to the MRI that I just know is waiting for me in the offing. I did get another blood test for the sed rate (my understanding is that this has something to do with the way the blood drops while in a test tube...yeah...right!)



Okay, that was short-lived! The headache came back so I am back on 40mg of Prednisone. Not sure how much more of this I can handle. The meds make me so hyper...at least I have a lot of energy and getting some work done around the house!

The doctors now have me taking Ambient at night to offset the Prednisone. I've been able to get to sleep by 3 AM and then up by 8 or 9. It's an interesting world, this world of the sleep deprived and insomniac. I have never fully appreciated the ability to fall asleep until it was taken away.

7 July 2010

The biopsy results came back negative for TA BUT the Prednisone did help the initial headache. Daily dose lowered to 30mg and will have another blood test on Tuesday for the sed rate. My doctor still thinks the TA was caught early but wants me to see a neurologist. Blurred vision no better and no worse so that is a good thing. Learning to deal with it. I just want to feel well.

5 July 2010

I want these meds I am taking to get under control! I feel like Judy Garland and Marilyn Monroe without the talent! Meds are messing up my sleep cycle. Need to get back into some kind of routine. Cannot play solitaire all night, night after night...

The side of my head, from the incision, hurts big time but the initial headache is gone which makes me think the doctor is correct in her diagnosis. Getting used (if you can!) to the Prednisone and hopefully my sleep cycle will adjust. Want to get into an exercise regime and cooking!

30 June 2010

I made it through the biopsy surgery although the 3-inch incision at my temple is kind of scary (looks like the lobotomy incisions from One Flew Over the Cuckoo's Nest), plus they used derma-glue to close it. Feeling a lot better today. Should have the test results early next week at the latest. Good news: the original headache is GONE! Getting my glasses next week. What if all I needed was glasses for distance?

The biopsy was done at Providence Tarzana Hosptial as an outpatient procedure. They took me down to the operating room and there was a delay. It was a odd lying there, alert, watching all the comings and goings that take place, bodies being wheeled in and out. People lying in giant ice packs to lower their body temperature, their faces with the waxiness of the dead. And, it was bright! Why do they TV shows make the ORs look like dark moody rooms when the reality is that they are bright, as bright as being outside in the sunlight. I spoke with the vascular doctor and the anesthesiologist while I was waiting. The anesthesiologist was kind of funny and I began babbling, much as I always do when I am nervous.

Once I was wheeled into the OR, I could hear music playing. The anesthesiologist was playing the MONKEES! Who the heck plays the MONKEES? I asked for the Goos and fortunately he had them. Nothing like being sedated to the Goo-Goo Dolls.

The vascular doctor had me go under general anesthesia rather than the twilight sleep option. Not sure why. They shaved the side of my head, luckily when I was out, and made the incision. I am guessing they take little samples of the vein for the biopsy. It is one nasty looking incision, but kind of cool in a let's scare and gross out the kids kind of way!

Keep your fingers crossed. I can even deal with months of Prednisone if the original diagnosis of temporal arteritis pans out. I am just not prepared for neurologists and MRIs. = (

28 June 2010

Saw the vascular doctor. He is not happy with the sed rate, location of the headache, and he, too, thinks it is TA. Have the biopsy set for Wednesday. Should be an interesting day. There go my lunch plans for Thursday and Friday.

Interesting thing about this doctor. He reminds me of the perinatologist who delivered the twins. Very kind and gentle. I am fearless around him!

26 June 2010 (my 56th birthday)

YES! Given everything I have read, I am hoping for the TA diagnosis as it is treatable. The Prednisone has taken away the initial headache. Do not want an MRI due to intense claustrophobia. I can deal with this. My doctor is getting me in with dietitian to help with the side effects of the Prednisone. May just be G-d's way to get my act in gear, lose weight and get into shape!

24 June 2010

I went to the eye doctor today. He did not see signs of temporal arteritis. Says I need glasses. He did this awesome retinal scan that showed the inside of my eye...no need to dilate! My other doctor still wants me to see the vascular doctor on Monday, but cut the Prednisone dose by 20mg to 40mg from 60mg. Yippee!!

22 June 2010

Went to the doctor who thinks I have temporal arteritis. It's something that has to do with an inflammation of the temporal artery which explains the headaches and the change of vision in my right eye. Her office made appointments with the opthomologist and vascular doctors. Had blood tests. Prescribed Prednisone... (YUCK!) and pain meds (no more Advil). Good news: can still go to the gym.