Tuesday, September 15, 2009

Lumbar Puncture - the good, the bad, and the very painful

It's been a month since I had my lumbar puncture. It has taken me a while to feel "normal" again - although my normal and a healthy persons normal are two very different things.

I wanted to get my experience about my LP out there because if one other person can learn from my experience, then I feel like my experience was worth it.

Let me start by saying the lumbar puncture itself went great. I didn't feel a thing. It really was one of the easiest tests I've ever had done. I would even say it was easier than a CT, just because I didn't have to take off all my jewelery. I was having a lumbar puncture to rule out Pseudotumor Cerebri, aka, Idiopathic Intracranial Hypertension. IIH is increased spinal fluid that can trigger Migraines. I had quite a few of the symptoms: no trigger Migraines, tinnitus (ringing in the ears), headaches or Migraines upon waking, preventives that did not work, or worked for a short time, neck and shoulder pain, pain behind the eyes and nausea.

So I have the LP which, as I stated went very easy. Actually, the test itself was fantastic. I get back to my room feeling great. I'm laying down, which I was told I would have to do for at least two hours until they would release me (I did this as an outpatient in a hospital, which is where most of these tests are done).

I was feeling fine for the first hour or so.....then the pain started. The head pain was not like my typical Migraine or Tension Headache pain, this was different. It felt like the cloggy feeling you may experence when in a plane - but to the extreme. I let the nurse know and she wanted to give my Tylenol - yeah, Tylenol. I don't even take that for a TTH, much less THIS! I thought it would pass or not get worse. The nurse left and I took a Vicoprofen that I had with me.

On the way home (the hospital I went to was about 45 mins away from my house), the pain increased. I had Shawn stop for a bagel and some tea, so I could at least eat for the first time that day (it was about 1 or 2 pm by then) and also have some caffiene. My doctor had said caffiene may help with the spinal headache.

I rested the rest of the day - the Vicoprofen did nothing. The next day, Saturday, I felt a little bit better - at least for a while. By Sunday, I could not lift my head off the pillow without getting sick. The pain in the back of my neck and head upon standing was so intense, I would vomit almost immediately.

I spoke with a friend of mine who I knew had some difficulties with this test and she said go to the ER and get a blood patch. I called my doctors office and spoke with the covering doctor, who said my doctor would be doing rounds in the morning, and if I could wait, go to the ER first thing Monday.

Monday morning we were back at the hospital. I could hardly stand or walk and the only way I felt halfway comfortable was laying down flat.

The doctors took me in right away - pretty much as soon as I was checked in. I got some Zofran to start with an IV and went up to have the blood patch. For those who don't know, a blood patch is when they go back into the spine, just above where the LP was done, and inject your own fresh blood back into your spine to help stop the spinal fluid from leaking. Most of the time your body will heal quickly and close over the hole from the LP, but if not, a blood patch can fix that.

I was told to sit upright with my legs hanging over the bed. I crouched over and hugged a pillow as the doctor numbed the area with lidocane. By now, I had an IV in my right arm and the doctor was taking blood from the side of my left arm. He injected 20 CC's of my blood into my spine and said I may feel pressure when he does this. I felt the pressure, but also relief. My head was feeling better, or so I thought.

Again, I though I was "good to go". I returned to the ER - now taking 2 full bags of saline in less than an hour and a half. I was so dehydrated from getting sick all day, every day, for the last 2 days. I went home and rested thinking I would go to work on Tuesday and everything would be fine. Wishful thinking!

I went to work on Tuesday - even drove myself! I felt ok in the morning, but by about 11 a.m. I could tell I should not have attempted working. I was bent over my desk between trips to the bathroom to get sick. I called Shawn to pick me up. I stayed home on Wednesday and again thought I was o.k. to return to work on Thursday. Wrong again! I had called my doctor during all of this - and spoke with a covering physician. I did speak with my doctor on Thursday, and by that time, I was out of my mind. I was hysterical and didn't know what to do. She told me "go home, stay in bed, and don't even think of moving until at least Monday". And that is what I did.

My doctor also called in a prescription of Prednisone, to help get rid of the spinal headache. I was to be on a Prednisone taper for about 16 days, taking one less pill every four days until there were none left.

By about Wednesday that week, a week and a half after my lumbar puncture, I was finally starting to feel like I was human again.

I wanted to get my story out there to let anyone who has similar side effects know - if you feel as bad as I did after your LP, call your doctor and get a blood patch. Don't wait like I did. I wish I had known earlier, I could have saved myself a lot of pain and money by acting earlier than I did.

So I'm sure you want to know the result of my LP as well, right?

As it turns out, I don't have Pseudotumor Cerebri. My opening pressure during my LP was only 14. Even with the Diamox that I take, that is on the normal side. This was a disappointment to me at first. I thought that having IIH that it would answer so many questions about my Migraine Disease. I thought if I only had IIH, then I can finally treat my Migraines in a different way and know what some of the cause of my Migraines were.

Although I am happy that I don't have IIH, I knew I had to have this test to know for sure if I did or not. The only way to be tested for IIH is with a lumbar puncture.

I do not regret having this done. I would do it again if I had to, but maybe would be quicker and realizing my symptoms were not the norm for the test. Only about 10% of patients who have an LP get a spinal headache. It really was hell for a week and a half, but at least now I know 100% with no question, that I do not have Pseudotumor Cerebri.


Anonymous said...

Thanks for posting. I was just recently diagnosed (23) with migraine headaches and your blog really helped me understand the situation. I wish the best of luck to you!

Eileen said...

I'm glad you are researching your new diagnosis! The more we know about this disease, the better we can fight for ourselves.

You may also like http://www.mymigraineconnection.com if you have not been there yet. It's a wonderful site with lots of info!

Good luck to you as well!

Manicured Slayer said...

Thank you for posting your experience w/ an LP and the hell you went thru!!

After 7 yrs of complex migraine disease, I'm at the end of my medical rope. No preventives or abortives work. Only one rescue keeps me out of the ER--and even now I'm having a status migraine (day 8) and had to get steroids for that.

I'm supposed to see a partner neuro to discuss Botox but I've never been tested for IIH/PTC (even though we did mention an LP at one point). So....scared as I am....I'm going to mention it. Better to know.

I have a friend online who went thru hell like you, she's promised to "virtually" hold my hand the whole time. And knowledge of what to do just in case, really is power!


Angela said...

I want to thank you for your story. I read it before going through my spinal tap and, thus, knew what to look for so I could seek help early on. I, too, had the extreme intense pain - mine began upon walking to the car. It grew worse every day and was excruciating (and that is coming from someone who gets about 25-28 migraines per month). Because of you, I called the doctor the second day and had the blood patch done on the third day. I also insisted on pain pills on the second day (which did very little). THANK YOU SO MUCH!!!!! If it weren't for your post, I would not have been so proactive with the blood patch!

Nihou said...

Thanks for your post. I am currently going downhill again 20 days after lumbar puncture, having spent 6 days horizontal. I'll be talking to my GP about the blood patch.