Health update

Post started 12/3/12

Today was a scary day.  I went to see neurologists #2.  I finally have some answers to a majority of my health problems. It appears I have something called pseudotumor cerebri.  It’s sad that I am sort if happy about it.  It makes me feel like I am not crazy.  My body is thinking I have a brain tumor but I don’t.  This can explain why I have terrible headaches, dizziness, darkening episodes, tremors in my hand, tingling in my feet, I could go on and on.

This past weekend was VERY scary.  I started getting a headache on Wednesday afternoon.  Thursday I had group (I will talk about this in a bit) and had to leave early to get a spinal tap.  By the time I had to leave group for the appointment the pain was almost unbearable.  I made it home to have my sister drive me to the appointment.  I have never had pain like that before.  The best way to describe the pain is that it felt like a constant brain freeze.  HORRIBLE!  As long as I didn’t move AT ALL the pain would be tolerable.  This continued through Thursday, Friday and into Saturday.

Post continued on 12/6/12

What a week!  So, Saturday became so unbearable I asked my dad to take me to urgent care.  On the way to urgent care I began shaking and sweating like crazy.  The first urgent care we went to was closed.  We headed to a second urgent care.   I could not talk or even open my eyes at this point.  We finally got to the second urgent care and I went back to the room almost immediately.  They took all my vitals and the doctor came in.  He explained that their really wasn’t anything they could do for me at that clinic and he highly recommended I go to the emergency room by ambulance because it was a headache like I had never had before.  I of course started crying and asked the doctor to go get my dad.  I agreed this was the best idea.  They called for the ambulance.  shortly after we heard TONS of sirens.  They sent an ambulance AND firetruck code 3!  (I am a huge nerd and like to listen to our local police scanner-code 3 means “Emergency-proceed immediately with lights and sirens”).   My dad and I started joking that we should turn the scanner on and listen for my call.  Needless to say we didn’t, I was in just too much pain.  Most everything from that moment until we were most of the way to the hospital is a blur.  When I got to the hospital I was not thrilled.  I felt like people thought I was there just for drugs.  NO, I do NOT want any more medication in this poor body of mine.  After what seemed like forever I was put in a room.  It took 4 pokes to finally get an IV started because I was so dehydrated.  Luckily I don’t have any issues with needles.  The doctor came in and talked with me about everything that has been going on.  He then called and talked to the on call doctor at my neurologists office.  He ordered an MRI to confirm I had no tumor/clots/pinched…anything.  Part of the joy of everything happening in my life has been weight gain.  Well, that hindered my scans.  I was too fat to fit into the standard MRI machine!!!!!!  I fit inside but it was not comfortable and I started having a panic attack almost immediately.  They pulled me out and sent me back to my room.  At this point my dad and brother joined me in my room.  The doctor gave me some pretty good pain meds- dilaudid.  Sadly it didn’t take the pain away.  I had a CT scan (including 2 more pokes for a different IV) which came back negative WOOHOO but still had no relief.  Since Saturday evening I have had a little improvement.  I have to lay totally still, flat on my back to make the pain bearable.  I called my neurologist today and we both agree it sounds like I have a leak where the spinal tap was done.  I am going in tomorrow to do a “patch”.  It sounds simple and at this point I will do anything and I mean ANYTHING to get rid of this pain.  I have had to put my life totally on hold.  I can’t go out, heck, I can’t even leave my bed.  I can be upright for no more than about 2 hours and that is if I am sitting totally still.  My depression is getting worse because I am so alone sitting in here.  There really is a limit to how much one person can lay in bed watching tv and playing on their phone/kindle.  I AM AT THAT POINT!

About group I mentioned above…  My depression became so bad I was on the verge of total meltdown.  I have THE BEST doctor in the world!  I was crying uncontrollably in her office and she said she is going to do something about it.  She made a call and got me into what they call “intensive outpatient behavioral therapy”.  This has been the best thing ever!  I wish this was more readily available to people.  Basically the way it works is I go to group therapy Monday through Saturday from 9-3:30 for group therapy.  There are 4 sessions throughout the day which focus on coping strategies for whatever depression/anxiety issues each attendee has.  It has been so nice being with others who feel the EXACT same way I do.  After about 2 weeks you cut down (if you are ready) to 3 days a week.  Slowly you cut down until you “graduate”.  Each week you meet with a therapist a minimum of 2 times and a psychiatrist at least once.  Part of the program is to help you find a therapist, psychiatrist and general doctor before you graduate.  Along with the daily group therapy having these people in line when you leave “should” help a person be successful in managing their life/depression/anxiety.

I am so upset though.  I have had to withdraw from group.  Because I have not been able to go they took me out.  My counselor in the program said as soon as I am well they will bring me back to group.  I just hope I can go back into the same group with the same counselor and the same psychiatrist.  I felt a connection with each of them.  I think by Monday, if the patch works tomorrow, I should be back in group.  I am so ready to get my life back in order.  My psychiatrist at group is working with me to get into a health program.  Part of the treatment for the medical condition pseudotumor cerebri or idiopathic intracranial hypertension is weight loss.  She knows of programs to work with people like me who really HAVE to lose weight to save their life.  These groups work with patients by setting them up in group therapy (another group-yeah :)), nutrition counseling, psychotherapy with weight loss specific professionals, personal trainers and even physical therapists.  I am so ready.  I just have to kick the headache and I am in 100%!

One rant and I am done.  I have been working with the same therapist for nearly 6 years.  I feel like when I have needed her the most she has bailed on me.  I was supposed to have an appointment with her but had to reschedule because I had to get into the eye doctor for the cysts on my eyeball.  I went in and saw her the week before I had my big meltdown.  She said she was going to be out-of-town the following week but to contact her “when I need to talk”.  When I texted her and left her a voicemail her response was “I am out of the office”.  That REALLY pissed me off.  I was less than pleasant with my response to her.  She then said she was going to call me on Monday of this week.  Instead of calling she sent me a text that said she couldn’t call and would get in touch with me either Friday or next week.  Honestly, I have truly needed her this past 3 weeks and she has not been “available” when she said she would be.  I am a big believer in signs and I am starting to think maybe she is just not the right person for me anymore.  Last time I saw her she knew how “on the edge” I was and then has “blown me off” the past 2-3 weeks.  Now is when I need my counselor most.  It is disappointing to say the least.  It has taken me this long to really start talking to her.  Now I feel like it is all just a waste of time and money (a LOT of money-I pay for her out-of-pocket as she does not take insurance).  I guess I will feel things out as I get through the process with group and make a decision from there.  I can say this, I will NOT be reaching out to her for anything.  I will be reaching out to my “peeps” at group for any support/crisis needs that arise.

If anyone reading this has any information on pseudotumor cerebri also known as intracranial hypertension I would appreciate any feedback you have.  Thank you!!!

~ by emilysdailyadventures on November 28, 2012.