lymed out

my quest to getting these suckas out!

There are absolutely no words for the title of this post.


Actually there are 2 other possible titles.

#$%@#$%^&

OR

!@#$#%$%^^^%$%^%$%^%^#$%

But then it would have definitely hit your spam folder. So, after my Friday night which didn’t go as planned, my Saturday, Sunday, Monday, Tuesday, Wednesday, and Thursday, didn’t go as planned either.

As you all know, I got a Spinal Tap/Lumbar Puncture a couple Friday’s ago. This was because I got a sudden headache on top of 3 weeks of unexplained burning sensations in my head. Mind you, I have had weird sensations like tingling and shooting pains, but never burning. My last head MRI and CT Scan was in March 2012 so I had this vision of a tumour growing in there since last year and decided to get it checked out. I was “talked into” getting the spinal because the headache was “sudden”. To rule out an aneurysm or meningitis. Which of course, it did.

When I wrote you last, I was beginning to get a headache, but I didn’t know what type of headache it would manifest into.

Yes. I was one of those that got the spinal headache.

What is a Spinal Tap
They inject a needle into your spine and take out Cerebral Spinal Fluid to rule out stuff like Meningitis and other bad things.

What is a Spinal Tap Headache
According to the Headache Classification Committee of the International Headache Society, headache after a lumbar puncture is defined as “bilateral headaches that develop within 7 days after a lumbar puncture and disappears within 14 days. The headache worsens within 15 min of resuming the upright position, disappears or improves within 30 min of resuming the recumbent position”. This definition helps to avoid confusion with migraine or simple headache after lumbar puncture. SOURCE

What this actually means
That the spinal fluid is leaking from the hole where they inserted the longass needle to take out your spinal fluid. This creates a passage for the spinal fluid to leak out, changing the fluid pressure around the brain and spinal cord. You get an excruciating headache when you are upright, like even sitting. It relieves instantly the minute you lie down on your back. This makes it literally impossible to do anything simple, you know, like eating, showering and walking.

What a Spinal Headache feels like
I read somewhere that only 30% of people get this. Then I read somewhere else that it is 50%. Then somewhere else 70%. There are no words to describe this headache. Kinda like there’s no way to describe The Matrix, you just have to experience it for yourself. But here is my attempt:


A Spinal Headache is one that makes you feel like you got trashed all night, woke up on the street, accidentally got hit by a mac truck, dragged 2 blocks, then some guy from an alley decided it would be fun to come and smash your head with a mallet continuously for 120 hours. In comparison, a migraine would feel like butterflies dancing in the sky.


To sum it up, this is a little drawing I did on my iPad while I was in horizontal position for most of the week.

photo

What they say to do
To relieve symptoms, take caffeine pills, or drink 100 bottles of Mountain Dew, or Coke, or anything that has caffeine in it. This “should” help with the symptoms. Did it help me? NO.

What they can do to actually get rid of the headache
A Blood Patch. They take blood from your arm and inject it back into your spine (not in the spine, but the area outside of it). The blood will then clot and form a “plug” that will plug up the hole. Almost like temporarily sealing a punctured tire. Your body will naturally seal that hole anyway, but this is a temporary reliever. The headache is usually INSTANTLY RELIEVED. Why isn’t this the first line of defence? Because it’s invasive and there small risks like Meningitis, infection, what not.

My concerns
Because I have Lyme, by taking my own blood and putting it back into my spine, will I cause even bigger problems? I asked my LLMD. She said that Lyme is all over our body, so nothing new to the spine. I asked Dr. Marty Ross on his online webinar. His response:

“I don’t know the answer to your question because we have never had any research done for the infection of the spinal cord. Having said that, to be honest, if you already have Lyme in you, it’s probably floated throughout your whole body and blood system and therefore gotten into the brain and your spinal system as well. So the likelihood is that it’s there and isn’t necessarily causing you any lesions on your spinal cord or your brain. I’m not sure if you take your own blood and if you are going to introduce more infection into that area, but again, there is no research done in this area.”

I did more research on Lyme and spinal blood patches, nothing came up really, but I did come across HIV Patients who got the same thing done. They were monitored for about 1.5 years after the blood patches and they seemed to do well after that.

Anyway, here are the events that unfolded. Sit down because it’s long.


Saturday – where I left you from my last post

Sunday – woke up, hmmm feel good! Sat down and ate breakfast. hmmmm not so hot. OMG I have to lie down. Like right now. Husband and Child, I don’t think I can make it to Church with you! Spent the rest of the day lying down. Tried to shower but had to do a countdown before the headache came in.

Monday – woke up, ok good, maybe it’s going away. 15 minutes later. Ok maybe not. OMG, help me! husband is working, child is at school. Thank goodness for moms. Spent the remaining day lying down and trying not to puke from headache. Barely ate, appetite totally gone. Google is not a good friend at this point.

Tuesday – Our 13th Anniversary. Husband has a huge event for work, probably the hugest event of the year. I really wish he was home today.
6:45 AM – Mom, please take me to the ER, I need to get this damned blood patch or I think I will literally die later today.
6:45 AM – Probably the fastest shower I ever had in my life.
7:10 AM– Wolfed down breakfast.
7:15 AM – Saw Child off on school bus.
7:30 AM – Mom dropped me off at the ER.  She was sick herself from a bad cough and didn’t want to be in the hospital and infect everyone.
7:45 AM – Explained to Triage Nurse about spinal tap and spinal headache. Brought me into another room. Head is exploding at this point.
8:15 AM – Another nurse comes in and asks me the same questions.
9:30 AM – Doctor comes in and asks me the same damned questions. UM OK, are you all not reading your clipboards? or are you writing stuff to look busy but not really writing anything at all? Doc assess situation and tells me he will page the Anaesthesiologist (who is the only one that can do the Blood Patch). In the meantime, he will give me a pain killer shot in my bum. “Um these aren’t steroids right?” It’s called Toradol, a non steroidal anti-inflammatory pain killer. I am not convinced.
9:45 AM – Nurse comes and gives me this shot in my bum along with another shot of something else. Again, I am assured these aren’t steroids. I wasn’t feeling very good about this.
9:50 AM – Nurse now draws blood. They need to make sure my blood is good for the blood patch. If you are on blood thinners, a blood patch will not work on you.
10:00 AM – Please go back into the waiting room and wait for our call. It will take an hour to get your blood results.
10:30 AM – Ok. Headache is now killing me, can’t lie down, have to put my head back on upright chairs with 100 sick people around me.
10:35 AM – UM, stomach not feeling too hot. Infact, it’s starting to get upset. Run into the bathroom.
10:45 AM – OMG what’s wrong with me! Bathroom time again!! Must have been those damned shots!!!

At this point, I have never felt so sick and disgusting and wanted to crawl out of my own skin. I had no car to drive home, nor could I drive home, my stupid phone battery was already at 30% by 11:00 AM after being charged all night (thank you iPhone you suck). I called my mom to please come back and sit with me. I really needed some moral support. And the bum shots did nothing for me by the way. All they gave me was an upset stomach.

11:15 AM – Mom comes and sits with me although paranoid about her coughing.
11:45 AM – OK WHAT IS GOING ON
11:50 AM – “Hi Nurse, do you have a bed or something I can lie on, my brain is literally going to fall out.” “Absolutely not dear, we have none.”
12:00 PM – I was nearly at the point of lying on the floor.
12:30 PM – I find the ER doc and ask him what the hell is going on and he says “Oh, yes, I paged the Anaesthesiologist, however he is back to back in surgeries until 5 PM. And there is only one Anaesthesiologist in the hospital. You can come back at 5PM at which time he will be on call. But even then, we can’t guarantee that he will be available. He suggests that now you go and get some caffeine pills from the Pharmacy” CAFFEINE PILLS SMASHEEN PILLS!!!!!!!!!!!!!!
12:31 PM – I am now ready to go find a meat cleaver to chop off my head.

My mom drives us home, I was so exhausted and in so much pain, I passed out in the car. When we got home, I literally walked in and laid on the floor by the door.

12:45 – I call Husband crying and delirious.
12:47 – 4:30 PM
– Passed out on the couch.
4:30 PM – Mom takes Child (who’s now home from school), to his swim lessons.
5:00 PM – I hear the door opening in the midst of sleeping. OMG is that a burglar!? It can’t be Mom and Child, they are still at the pool? I see a figure, a dark figure approaching. OMG, is that our neighbour? or is that Child who grew 25 years? Am I hallucinating?

It was my husband who came home early!!! OMG! Thank the Lord!!! I was literally crying. I have never been so happy to see him in my life.

He came home at my distressed call, despite the huge event he has been working on for 6 months. He assured me he had all his guys ready to take over for him. I was relieved. Besides it was also our 13th anniversary. He asked me how I was doing, and came over with our anniversary gift. I was like “NO!!! NOT NOW! NOT WHEN I FEELING LIKE THIS!!”

6:00 PM – My awesome cousin stops by with some soup for me and I was feeling pretty good now, but 15 minutes in upright position clearly confirmed I was wrong.
7:00 PM – Husband, please take me back to the ER.
7:30 PM – Hi Ho, Hi Ho, it’s back to the ER we go.

photo

8:00 PM – See the Triage Nurse for what seemed to be the 100th time. Explained again.
8:30 PM – Go inside to that other room. Encounter the same ER doc in the hallway who did the original Spinal Tap on me last Friday. “Hi!!! I’m back!”
9:00 PM – ER doc finally comes into the room. “Ok young lady, what happened now!” He knew what was coming. He said by the way I walked in smiling, that I looked fine. My husband piped in “She holds her pain well, she went to 6 cm without uttering a peep during labour”. I threw on the theatrics at this point. I wasn’t leaving the hospital without a blood patch. The ER doc tells me that the Anaesthesiologist will probably not do it. I said “WHY! You told me you would do it last Friday!”. He says, normally people with Spinal headaches can’t walk and are vomiting all over the place. But he pages the Anaesthesiologist again and asks me what pain relievers I want. Tylenol 3 or Percocet. I asked what the difference was. He explained once he had Percocets and when the pain wore off, the Percocets made him dance on a bed. I decided to take the two Tyelonol 3’s.
9:15 PM – OMG headache is gone. Thank you Tylenol 3. But now I had this severed stabbing pain in my stomach from them. UGH!!!!!!!!!! SERIOUSLY???!
9:30 PM – “Ok young lady! we convinced the Anaesthesiologist to do the blood patch!” oh thank the stars.
11:30 PM – Anaesthesiologist enters the room. I wanted to kiss him. He asks me if I was the same girl that was waiting for him in the morning. I said yes, but went home. I explained that I have a 6 year old, I can’t work, I can’t cook I can’t sit up for more than 10 minutes without wanting to puke. He looks sympathetic.
11:45 PM – He gets 2 nurses, and starts to gather all the medical stuff and starts explaining the whole blood patch procedure. I’m like Yes, I know all this already, what do you think I’ve been doing for 4 days lying on my back? There’s something called Google. Infact, I am pretty confident I can do this procedure myself. I mention then about the Lyme. He asks if it’s a blood-borne infection, because there is concern about injecting infectious blood back into your spine. I said I think so? He said that Lyme is usually considered an acute infection, but in my case (1.5 years of treatment) that is is chronic and should be ok. At this point, I didn’t care.
11:55 PM – I am now hunched over, ready to have the long needle inserted again. Then he rushes to my arm and draws blood there. The he rushes back to my spine and injects it there. I could feel pressure, lots of it. It was 20cc’s of blood.
12:00 AM – All done. Lie down for 3 hours on my back. This time, I. DID. NOT. MOVE. A. MUSCLE.
12:05 AM – Husband sleeps in the car outside.
1:30 AM – Nurse comes in to check on me. All good.
3:00 AM – Nurse wakes me up, husband comes and gets me. We go home. Nightmare over.

Wednesday – Feel so much better. Lingering headache but not Spinal headache. Difference? If you lie down and still have a headache, it’s not a Spinal Headache. Just a regular old headache which I now view as a blessing. Was lying down pretty much all day again to make sure the blood patch didn’t dislodge.

Thursday – Oh so much better, still minor headache. Still laying down.

Friday – Took it easy. Was able to work for a little bit and sit at my desk. When I get up, I get about 3 seconds of spinal headache. Then it goes away.

Saturday – Still took it easy. Did some laundry but made sure not to lift anything heavy. Started getting this weird pain in lower back right by bum… when I get up, it really hurts. Maybe this will go away.

After That until Today – Getting better each day. Had an acupuncture session about 1.5 weeks later. I told her what went down and to be mindful of that area and the acupuncture needles. She says “OMG, spinals are very invasive! And normally acupuncture needles don’t even go near that area, so don’t worry”.

Acupuncture Update: She said my head and neck area are releasing very well. I told her about the lower back and bum spasms when I get up from a seated position (probably due to the whole Spinal Tap ordeal). It’s now painful enough to cause me to stop what I am doing and start the labour breathing to get through it after I stand up. Then it passes. She said the reason for the nausea and all that stuff is because everything is located in the head area. This is where all the signals are and my head is very bad, but she is very happy at my progress.


LESSON + TIPS ABOUT SPINAL TAPS AND HEADACHES

  • You don’t need to get a spinal tap to get the headache. Usually this is also for moms who do C-Sections because they go into your spine. This makes sense as every time I went back to the ER, they asked me if I just had a baby.
  • The blood patch isn’t that painful. At least for me it wasn’t. The staff at the hospital were really good and I didn’t have a terrible experience with them. The Anaesthesiologist assured me over and over that they are very good at what they do. And he was right. (BUT, I wish they gave me better instructions about laying flat).
  • If they use smaller gauge needles, you may not get the spinal headache.
  • After you get your spinal tap, make sure you LIE DOWN FOR 24-48 HOURS. Actually, make that 36 hours  – a week to be safe. I am seriously not kidding. I would rather take a week off work then to go through that torture. They neglected to enforce this rule on me. Because I was up in 30 minutes eating, running to my car, and moving furniture. DO NOT, I REPEAT DO NOT DO THIS.
  • Drink lots of fluid, like water and caffeine to replenish the fluid while the hole is healing. This didn’t help me at all, but it may help you.
  • For a visual on the headache, if you have ever watched Mission Impossible 3 when Tom Cruise was trying not to let that bomb explode in his head. That kind of pain. Yes.

This has got to be the absolute WORST experience of my life. It was mentally and physically draining. I would equally compare this to the first time I was sick with Lyme, except with this, I knew what was wrong but the real stress was getting them to perform the blood patch as well as knowing you may be injecting spirochetes back into your system.

Thank you to all my friends and family who stuck with me, listened to me complain, and to God, who I must have talked his ear off that whole week. He is my source of hope and peace and I really wouldn’t have gotten through this week without HIM.

One thing I forgot to mention: They never figured out why I had the burning sensation. UGH!!! I am scheduled for a head MRI in November and then to see a Neurologist as well. I complained to them that they sent me to see a 1 star rated Neurologist and she chuckled and booked me in to see another one instead. YAY.

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13 thoughts on “There are absolutely no words for the title of this post.

  1. robin shideler on said:

    I had that after my c-section in 1990. My husband treated me like I was a drama queen. That lead to our divorce.

    • OMG I hope u are joking!!!! lol

    • robin shideler on said:

      I wish I was joking. You know how bad spinal headaches are and mine was just as bad as yours but my husband didn’t show me any care or understanding and eventually that and other similar issues lead to our divorce.

    • oh my goodness….!!! That is so awful and I’m so sorry to hear that… u must have went through alot… thanks for sharing and again, I’m speechless… half my battle of going through that was the support from my hubby and mom, I don’t know if I would have made it without them… Hugs to you!!!

    • robin shideler on said:

      I also want to tell you how much fun and laughter your crazy blog gives me. You are going through so much that I can relate to. You have such a great ability to tell us your horror stories with an incredible sense of humor and lots of heart. Thanks so much for all you do for me and others.
      I take some of the same meds and have some same symptoms from my Lyme disease. I’ve been sick for 20 years and finally got diagnosed with chronic lyme two years ago. I know it doesn’t seem like it but you are so very lucky you got diagnosed so quickly. I was told for many years that it was all in my head while I slowly died. My slogan was I’ll find out what’s wrong with me during my autopsy.
      Take care and keep writing, please.

    • Awww… thanks so much. I try to make it funny because then it wouldn’t be fun. lol that is a long time, but I am glad u finally figured it out. Same thing for me, I have a type A personality and wouldn’t let these stupid docs tell me it was in my head either.

  2. Wow. What a week it has been for you. Glad you are feeling better. I truly enjoy your blog and your sense of humor. I have been sick for 7 years and just a month ago got a positive IGM result from Igenex. I am pretty terrified of the treatment and the long unknown road ahead of me. Your uplifting style of blogging gives me hope. I wish you better days ahead.

  3. There are no words, I literally had years in my eyes reading about your suffering. I am hurting for you right now and praying for you. I am glad you got some advice from Dr Ross (he is my doctor). I pray for your healing and that you never have to suffer this badly again.

    • Thank you so much for your comment!!! Are you doing ok? I love Dr. Ross, he is such a wealth of info… please let me know how u are doing.

  4. Hope everything works out for you
    And remember, even on your worst days, that you’re one of the lucky ones getting treatment

  5. Pingback: there is no spoon | verse33

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