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.

Things A Person With An Invisible Illness Hate To Hear

This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.

This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?

"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.

I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.

This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.

"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."

Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.

Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.

"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.

"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.

My friend Heather has a great little signature on her posts over at My Migraine Connection. It says: My disabling chronic illness is more real than your imaginary medical expertise.

I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.

I can't wait to hear what you all have to say! I'm sure this is not all of them!

Invisible Illness Week Starts TODAY!

Today is the start of Invisible Illness week.

I was reminded way too much recently that I have an invisible illness. I suffer from Migraine Disease. I also suffer from Depression.

The Depression may come and go, but the last couple weeks were just awful. It was brought back on by a drug, Inderal, that I was taking as a preventive for my Migraine Disease.

Yes, sometimes the drugs we take have adverse side effects that seem to put us back a few steps. I spoke with my doctor today and I am tapering off of it and seeing him next week.

And just for those of you who may think that living healthy or breathing deep will "cure" Migraines - I already do all of that.

I tried the natural approach for almost a decade as my Migraines got progressively worse. I hated the thought of having to be on a drug for the rest of my life. I tried to just suffer though an attack - not even take Advil - and you know where it got me? In the doctors office for some preventive medication!

If those things work for you - I really am truly happy for you. But please don't preach to me how your way is the ONLY way - I've tried it. The only way I can even somewhat function in my daily life at this time is with preventive medication.

Yes, we Migraineurs get a slew of different reasons thrown at us as to why what we are doing is not the right approach. That I can think of off hand, I've been told "no more caffeine", "get pregnant", "breathe deeply and relax", "try chiropractic", "try holistic healing".

Ya wanna know something people: I've tried it all!!!!! Well, except for the getting pregnant one. That one will have to wait for a very long time.

Having an invisible illness is a sad and lonely thing to go through in life. It take so much some days for me to wake up and face the day. I take a handful of supplements every morning, on top of my preventive medication. So it's not like I'm taking just the preventive. I take 6 different pills before my preventive, and that's just vitamins and minerals.

Sometimes we all just want to scream SHUT UP to the "have you tried" and "you are attached to your pain" people.

Walk a mile in my shoes and tell me that what I'm doing is wrong. Tell that to anyone with Cancer, Fibromyalgia, Diabetes, Depression, or Chronic Fatigue Syndrome. It SUCKS!!!

But, as my favorite saying goes:

"The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." Ben Okri

I will be greater then my suffering. This disease has made me want to make a difference for myself and for others.

Awareness is key. I intend to fight for a cure, to fight for better doctors, and fight for all of us out there suffering. "Safety in numbers" as they say. Together we will change the face of Invisible Illness.

Using a capital M

My lovely friend over at My Migraine Connection, number one patient advocate (yes, that's right, she rocks!), Miss Teri Robert, has written an awesome Share Post about the capital M.

What is the capital M you ask? Well, it's the first letter in the word Migraine!

I've spoke to Teri about this before, and I am in total agreement. Migraine should be capitalized!!!! It should not have to do with a person's name, if it is a disease, it should be capitalized! At least this is my feeling on the subject.

If you would like to read Miss Teri's Share Post, and I know you do!!, you can check it out: Migraine with a capital M

One heck of a week....

Just a little update here.

Up until now, I've been pretty lucky. I have been averaging about one migraine every sixteen days. This has been my pattern since January, when Dr. Greene put me on the Amitriptyline, which was added to my Topamax.

Well - this week has just proven to me that I can still take a step backward.

"Just when you thought it was safe to go back in the water." (for those of you who don't know, this is the famous tag line from JAWS, which is one of my all time favorite "horror" movies and the reason I don't swim in the ocean)

I had three - yes three, migraines this week, including today - right now. The first two this week started out at tension headaches that I could not get rid of with my normal Skelaxin, and then went into a migraine. After I took a Frova on both of these occasions, Mr. Migraine went away.

Today was a different story.

It started out very small and quiet. I thought, "oh, no big deal, I'll throw some Skelaxin at it while it's at a 0/1 and I'll be good to go". Well that didn't help so an hour later I ended up taking a Frova.

The Frova knocked the pain down from it's then 4 to about a 2, but the throbbing in my left eye was still there and reminded me every time I moved. Along with the oh so lovely nausea. Thank God I had learned earlier in the week from my girl MJ (see her blog at Rhymes with Migraine ) had mentioned something about how Ginger Altoids help her....low and behold we had them in the kitchen at work! So I ate my weight in them today.....

I get home and Mr. Migraine is still alive and kicking. I end up resorting to my rescue drug, Vicodin. I only take half tabs because of course, the whole pill will make me nauseous. So I had a half and was good for about 3 hours, now I feel it creeping back up again. Oh what fun it is!

I really can't think of what caused this sudden spike in migraine activity, except the change in the weather. Everything here in good 'ol New Jersey is in full bloom, although I don't seem to be having any allergy symptoms.

Oh well. Ya win some, ya lose some.

If this keeps up next week, I'm definitely going to call my neuro and see if I can get in a litter sooner then my scheduled appointment in July.

I hope the rest of you out there in migraine land had a better week then I did!!!!
Enjoy the weekend!!!!

Fighting the good fight.

The road to "recovery" or just I guess a better word would be "managing" migraines can be a very twisty, windy road, with lots of branches and speed bumps in your path.

I started on my journey to gain my life back from my head about 3 years ago now, when my migraines grew out of control. Back then, I didn't even know what a migraine really was, or even thought that I had them.

All I know is that I would be at my office every day with tears streaming down my face, not because I was crying (well, sometimes) but because the pain was so intense and the lights so bright, that my eyes would tear from the pain.

I thought this is something I just have to deal with, it's just a "bad headache". In a way I'm so glad I was wrong. At least now, I don't suffer alone.

I have found through education, which, sorry to say, really didn't start with my first doctor - all they did was throw some Zomig at me and say "try this when you feel your head start to hurt". Yeah, thanks for your time!!!!

Between doctor #1 and doctor #2 - I found the site and the woman that helped me change my life (holding back tears now). My Migraine Connection is the site, and the lovely Miss Teri Robert is the woman. This lead me to Teri's book, Living Well with Migraine Disease and Headaches. I think I read it in like 2 days! I couldn't put it down!!! It was everything I needed to know about migraines that my doctor didn't or wouldn't tell me (yeah, that's part of the title too! LOL)

So between the website, the book, and Teri - I knew that there had to be more out there for me. I saw another doctor and was scripted my first preventive.... Topamax.

Topamax became my life saver....but it didn't last long. I found myself on the MMC forum every day, asking questions, talking with people with migraine and going through the same things I was going through. I kept reading, learning and educating everyone I could on this disease, as fast as I could learn about it!

Now, I am trying to not only be my own advocate, but be one for others. I now host on MMC with Miss Teri who is the end all, be all of migraine knowledge, among other things she is one of the nicest people I've ever had the pleasure of speaking with.

So you ask me how I cope with what I know know is a neurological disorder that effects over 36 MILLION Americans?

I learn. I teach. I fight. I educate.

I go to sites everyday to see what's what with the latest on migraine - blogs, MMC, email alerts anytime Migraine is mentioned ANYWHERE on the web!!! Yes, maybe it's become a little obsessive, but this is not like any other disease, at least not that I know of.

There are hundreds of different preventive medications currently being used for migraine treatment....it can take a very long time for a migraineur to find the one - the one that works. I try as hard as I can to be my own advocate. I learn about this disease, sometimes to the point where I know more then the doctors treating me (and that's when they get fired!).

I am out there, fighting not only for myself, but for all of us migraineurs - fighting to get us more funding, by sending out emails and posting about the AHDA. I'm leaving the flyer's in my office, giving them to friends, family, my doctor, pretty much anyone who will take one and give me two seconds to explain how important this really is.

This is how I cope. I cope by fighting the good fight. I cope by knowing, we can and we will make a difference.

We are one voice united, and if we all fight together, together will succeed.

Ugh - Monday!

So, It's Monday - after a nice long weekend and I'm tired! I can already feel my head throbbing. It's up the left side of my neck and into my left eye. I was in to work about an hour and a half before anyone else. I thought if no one else showed up I would leave, but alas, they did.

My aunt is doing ok. The doctors found nothing after her turkey day fiasco. She stayed in the hospital till Friday evening. It's just so strange.

I think it is going to be a Frova day today. That and positive thinking. It's a gross, rainy NJ day out there. My migraine is probably weather triggered. That's all I can come up with at the moment. I'd much rather be here:




But for now - I'll sit here in dark glasses, try to go unnoticed and down a Frova.

Here we go!

So I decided to start a blog....

Here's a little about me. I am a migraine sufferer. For those of you who don't know, Migraine is a neurological disease that strikes 36 million Americans. I have had the honor of hosting at a wonderful site - My Migraine Connection which is run by the lovely Miss Teri Robert!



After reading her book, Living Well with Migraine Disease and Headaches I can honestly say it changed my life. I went from being just a sufferer to being an advocate. I am now so much more involved with my health care then I ever was before. Her book gave me my life back.
And, the forum setting she has created on that site is so comfortable - it's like talking with family - only they actually "get it"!

Since this is my first "blog" and I'm just learning my way around this thing - I'll just start with this.

If you are suffering from migraine - know there is help out there. You do not have to suffer alone. Migraine is a silent disease. It can also be very depressing. I know for me, there are many times when I feel alone and sad, depressed and like no one understands. Trust me - people do.



There are so many medications out there now to help control migraine - it's amazing. There are over 100 different preventives, in almost every drug family, Anticonvulsants, Beta Blockers, Anti-depressants, SSRI's, Muscle Relaxers, ACE inhibitors, Calcium Channel Blockers, just to name a few!



My current regimen consists of 75mgs of Topamax (anti seizure) which I take in a split dose, 25mgs in the morning and 50mgs in the evening. I also take a multi vitamin, 250mgs of Magnesium, Frova 2.5mgs to abort, Skelaxin 800mgs as needed, and Meletonin every night at bed.



That's just a bit about me - I figure that's good for a first post right? But because of my obsessive nature, I'm sure I'll be back on here later to post again!