Saturday, September 3, 2011

Basilar Migraine or Not?

Not sure where to begin with my latest update...or lack there of because I still have no answers. 


On my birthday, July 27th, I noticed strange sensations in my left leg and foot.  I shook it off and thought it was because I sat on my ass in a 10 hour computer class all day.  It was numb and tingling...a "pins & needles" feeling. 

Over the next week or so, I noticed it getting worse...and it was not going away.  While it is very was also beginning to be painful. 

Eventually I started feeling the same sensations in my left arm and hand.

On August 17th, I had my second 10 hour computer class.  I realized throughout the class that I could also not hold up my left arm or write.  I am left handed, so not so good.

It just so happens that sitting next to me was my Neurologist's wife, our hospital Stroke Coordinator.  While we chit chatted about our common history of Migraine, I told her the other symptoms I started experiencing.  She sent her hubby a text, and he called me with an appointment for the following morning.

He was of the opinion that my left sided deficits were due to Basilar Migraine.  While yes, my head hurt as it does every single day, I did not feel like it was Migraine.  Although he explained it was still probably symptoms of one even though I didn't have any aura as I usually do.  That kinda made sense so we came up with a plan.

He gave me 2 IM injections right then and there.  One was DHE, the other, Reglan.  I was to come back to his office every 8 hours for the next 2 days to have the injections.  So...I did and I wanted to jump out the window.  I felt like I was crawling out of my skin.  I felt so jacked up and anxious.  I now realize it was from the Reglan and I will never consent to getting that medication again!  For a week I had full blown panic attacks.

Anyways...he also sent me for yet another brain MRI...which was normal as always.

Over the weekend he sent me home with a "rescue cocktail" of Lortab 10/500 mg and Ativan 2 mg to take every 8 hours.

They did nothing for my symtoms, as I knew they wouldn't.

On Monday the 22nd, he called me and asked if my arm and leg were magically cured...of course, they were not.

So...he had me direct admitted to the hospital for "Status Migrainosus".  Which I still did not believe I was experiencing...but really, who am I?

So I VERY reluctantly went.  All the while continuing to have severe panic attacks from the Reglan.  I was quite literally a basket case! 

I was given cocktails of IV Depakote, DHE, Phenergan and Benedryl for 3 days.

It sucked.  The DHE made me so sick.  But if there is any was I couldn't eat or keep anything in my stomach and I lost 5 pounds!  Gotta keep looking at the bright side, right!?!

I also had an MRA/MRV the 2nd day I was there.  The results came back with a possible blockage in my left transverse sinus (back of brain).  So the Neuro (oh and not mine because he failed to come see me at all while I was in the hospital, even though he admitted me) explained that I would need a CT Venogram to confirm and if there was a blockage, I would need a shunt placed.

I had the CT Venogram on my 3rd day there.  The report came back as asymmetrical transverse sinus, probably congenital. I was told that could be normal and that a shunt was now not necessary.

I had had days of medications that were not helping my symptoms and my diagnostic tests appeared to be normal, so I requested to be discharged on Wednesday.

I continue to have left sided weakness and numbness and tingling.  I continue to have my usual daily headaches and all the other wonderful accompanying symptoms I have been experiencing for years.

I have yet to have a follow up with my Neuro, and I have been calling everyday for a week, with no return phone calls.

I went and picked up all my medical records, discs of MRI's and reports of all my testing and sent it off to a specialist up hopefully I will hear something next week!

I got a kick out of reading the progress notes written by the neuro who saw me in the hospital.  He made numerous mention of decreased strength and sensation on my left side...yet no one seems to think it is abnormal for a 34 year old female to be experienceing this, nor is anyone coming up with a plan of care.  Again it was said to be a characteristic of Basilar Migraine.  Really?  Since July 27th?  Doubtful.

I went and saw my Rheumatologist so I could  feel like I was being somewhat proactive.  He, of course, said he believes it all to be neurological, however ran a bazillion labs, which I hopefully will get the results on Tuesday.

Meanwhile, I have been off work since August 9th and have no clue what I am supposed to do now.


steph said...

Hugs, lady.

Just to cover your butt, I'd suggest making sure your ducks are all in row for possible disability applying. If you aren't doing the fmla, do it, and give social security a call. If things improve, awesome! Cancel the process and move on with your life! But if they don't, you'll be glad you had this already in the works.

Migrainista said...

Wow. What an ordeal they have put you through, and without even an attempt at solutions. Troubling.

I hate that this is happening to you. Hopefully this doc up north will be willing to see things through to a diagnosis or at least some relief of your symptoms.

Jessica said...

Well one of my docs still thinks it may be a Chiari malformation compressing my I sent my scans to the Wisconsin Chiari Center. Hoping to find something out soon!

Steph...I don't know that I'd even get approved for any kind of disability without a diagnosis other than basilar migraine??? Not to mention I wouldn't be able to support 2 children on it! It's definately stressing me out. I think I'm going to have to just go back to work on Tuesday regardless of how I feel.

Heather and Kathy said...

oh my Jessica! I take Reglan on a regular basis several times a day to help my stomach digest properly. I didn't realize they could give panic attacks! I do hope they find something. I, too, have my left arm and legs go numb for no reason, but I think mine is from Fibromyalgia or so the neuro dude says. I really hope they get this under control. I find my numbness happens more when I am working on the computer. It happens frequently and often when I am on the computer. I have to stop and flex my arm or stand up to "wake" them back up. Oh, also, you are right about the disability. I have it but it doesn't cover all the bills so to reasonably expect to raise the kids, that might be an issue. Although for me, I will never really be able to work full time again, it is very helpful and I am GLAD I have it. Also, it takes months (more than what they tell you) just to get a caseworker and then months and months after that to find out if you are approved or not. If you do decide to go with the disability, my advise would be to break all the symptoms down instead of lumping them together. For example, I put Fibromyalgia, concentration problems, memory problems, headaches, arthritis... you get the point. I think it helps them realize what is really going on instead of just writing Fibromyalgia. I could be wrong, but I think this is why I was approved right away.


Jessica said...

Thanks Heather. As for right now...I have no intention of going the disability route. If I do need more time off from work, I will use my benefits through work. So far I have had enough paid time off and extended leave benefit hours to cover the last month. If worse comes to worse...I may eventually go part time or change positions so I do not have to do 12 hour shifts.

I'd love to just have a reason why I am having these symptoms! Somehow it's got to be related to my head!

S.I.F. said...

I'm so very sorry Jessica! There is just no way anyone should ever have to go through any of this without getting real answers. I'm just so very very sorry.

Della said...

I hope you get to the bottom of this soon. Make sure all of your docs know about the numbness and tingling. Sometimes the smallest things added together make the whole picture.

Reglan never bothered me the way it does you. I take it for nausea.

Take care, and I hope you get some relief soon.

Sue said...

Oh my goodness, I'm so sorry. I hope things improve really soon.

Heather said...

Your symptoms sound scary...I'm glad you're taking this seriously, although the doctors don't seem to be! I hope you're able to see a new doctor soon. I'll keep you in my prayers!

Photos By Mamie said...

oh, i am so sorry. i know it is frustrating and painful.

i'm always amazed when i read my doctor's notes.
my favorite is when it starts out, pleasant 31 year old female. once i'd like it to say, pissed off lady wants to feel better.

Jessica said...

Omg...I know! Cracks me up what they right!