Wednesday, October 26, 2016

This Is Spinal Tap.

Since the last time I wrote about that "thunderclap" headache........

I am lying flat in bed with no other options. Because of that I can't write a lot (bad angle for the laptop and my head), but I'll try to give you a taste of what is going on here.

Since last Tuesday, October 18th, I have not had a break in headaches. At all. Not one minute. And many times it's worse than it is now (because I am trying to lie flat, which is when it feels the best, but still hurts).

Friday I went to the emergency room. The headache was so bad, and ongoing since Tuesday. It was by no means a migraine, though, it felt different than my migraines. We looked on line (Dr. Google), and there was talk of a possible hemmorage with the way the headache on Tuesday came about. There was talk about mortality; that people can die from this. The only way to rule out that particular hemmorage was to have a special CT (angio), and a spinal tap. It got scary, so I went to the ER.

I was there for t h i r t e e n  hours. Bright lights, tremendous noise, lots of sick people moaning, vomiting, talking loudly, yelling. It was.... yeah, not fun. I was alone for almost all of the time, except for a visit from a good friend for a few hours in there. That was good, thanks, BD!!

It's a long time, though.

Thankfully the ER doc was on the ball with what I was telling him about how the headache came on and it's symptoms, and knew immediately what tests to order and what we were looking for.

Anyway, eventually they got the CT done, then they did the spinal tap. I could give you an account of how things really went down there in the ER, but I literally cannot be in this position typing for very long. Suffice it to say that I was scared out of my wits to do a spinal tap; Robert had one a long time ago when he had meningitis, and I saw (and heard) him suffering from the test itself, and the lasting after-effects. During the whole procedure, I was praying to Hashem to guide the surgeon's hand (local anesthesia), and please save me from bad side effects, please be with me, this is my time of need, I'm scared, please guide the neurologist's hand, and so on....

Well, we never know how our prayers get answered. I may have been spared something much worse than what I am suffering with now, but this is what is going on:

First of all, the tests were Negative for the big bad hemmorage. Thank Gd.

I don't know which part of this picture is the primary headache, but what I have now seems to be spinal tap after-effects.

The main one being that I cannot stand up, or even sit (especially not sit) for more than about 15 or 20 mins. At all. A huge headache starts to take over my entire head, and a solid block of steel pain invades my neck, and I am desperate to lie down. Only lying down can give me relief. But not lying down on pillows with my head at an angle... down. As in flat. Try drinking and eating in that position. And the relief it delivers is not total. I still have a headache 24/7. For a week. Now. Always. When I wake in the night to use the bathroom, it hits me like a lightening bolt, even though I stand up slowly. I reluctantly wake in the morning, knowing that I have to deal with this reality again for a day.

I honestly don't know how I'm going to do life in my coming days/weeks.... obviously I can't drive. How is Azriel going to get home from school? Shifra has rehearsals with the show she is in, "Annie". I also have certain responsibilities to my friend's 6-year-old daughter. My friend is sicker than me. Life is complicated.

How am I going to stand in the kitchen enough to make dinners, salads, laundry, anything?

OK, One Day At A Time.
This will heal. I will heal. The spinal tap effects will heal. They are normal occurrences. People on the internet say, however, that it can take from two weeks to six weeks to totally clear up.

I don't know how long.
I have to just rest and give my body a chance to get better. The spinal fluid has to be replaced from where it was taken, and that takes time. That is what causes the headaches while standing upright.

I won't get into any more details. I need to go to sleep. I've been a bit fevery the whole time, too.
Please body, get strong, heal, return to me the gift of movement. I'll be patient. I'll try my hardest to be patient.

28 comments :

  1. Dearest Sarah I am sorry that you are going through this. May you be healed very quickly and have the grace to get through this.

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  2. Big Quiet Hug. Love. Hope just the thought will help you heal.

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  3. Hugs and prayers, Sarah. I wish I were there to try to support you.

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  4. Hugs. (I had one too when I was younger, because of a fear that I had menengitis).

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  5. I remember my mom's spinal tap years and years ago. They kicked me out of the room and I could hear her howling with pain. May this pass as quickly as possible. These words are nothing compared to my love for you. The strange thing is, even though you are suffering you are strong and up have great family support. I am confident in your abilities to heal.

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  6. And through it all, what you gave us first [on Facebook] was Dov's birthday... the joy of the birthday of your firstborn. Awesome ima.

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  7. I know the pain up close and personal. You are out of the torture time. May it be a kapara to spare you much further inner and outer suffering. Your spirit saves you time again through this healing adventure so PLEASE indulge in humor, treats to yourself and the compliment that other people gladly fill in for you when you need recovery time. Hugs. HUGS. HUGS!!!!!

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  8. So glad they didn't find anything but sorry it has such long aftereffects.My son had a spinal tap at 6 weeks old without anaesthetic and they never even mentioned that he could be in discomfort or pain after it. Be well. Perhaps week of Nov.7 I could come help one day if you still need or want a visit.

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  9. I'm so sorry you're dealing with this intractable pain.

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  10. Except for the headache that typically follows, the procedure sounds worse then it is.

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    1. What do you mean? The procedure itself was doable because I had the local anesthesia (which itself was no picnic), but what do you mean about "except for the headache that typically follows"? I can't stand up without my head assaulting me with pain. I'm on my back all day. That's the reality of my experience post spinal-tap.
      The procedure just takes out some cerebral spinal fluid to test. What makes the pain is the space in the lower back (lumbar) that is without CSF until it is regenerated. It's a fluid/pressure imbalance. I know you know this, just explaining for anyone else who may be reading.
      And of course you mean "worse 'than' it is...."

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    2. Thanks for the grammar correct. I had actually expected worse in terms of the procedure itself given the location of the puncture and the size of the needle. I definitely didn't have the kind of reaction you describe, but for an hour or two I was pretty sedentary from the headache.

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    3. An hour or two? You got off lucky.
      I didn't actually have the headache when I left the hospital, 4 hours after the procedure. I had the same headache I walked in with, but not this one.

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    4. I know that I have gotten off lightly with most of my medical stuff - not to say that I couldn't have been better off.... As I routinely tell people with regard to health and disease, there are two kinds of problems, with pain and with disability. The former can and often does come with the latter, and disability can also occur without pain. But the degree of suffering is exponentially greater when pain is involved, with or without disability.

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  11. perhaps some CranioSacral Therapy can alleviate the pain. CST is all about promoting optimal CerebroSpinal Fluid flow.

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  12. My thoughts and prayers are with you.

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  13. I know how it feels, Sarah. I had an "epidural headache" after my daughter was born when they nicked me, causing spinal fluid to leak. Flat on my back for 3 weeks with a newborn. Excruciating pain. I'm so sorry you have to go through it on top of everything else.

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  14. Sorry, friend. But I'm so glad this didn't result in scary findings. You're incredible- you endure so much and keep right on going. I wanna be like you when I grow up.

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  15. Not to play internet doctor, but don't they give a "blood patch" for the spinal headache from the patient's own blood? I think the blood fills the space of the fluid removed and it works within a half hour. Also have heard of giving large amounts of coffee to treat.

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    1. I have read about the blood patch. They didn't give it to me, but maybe I should somehow try to pursue that. Thing is, it's hard to pursue anything from my vantage point of not being able to travel. I should try to call my neurologist, but he's impossible to reach. I usually put myself in his office without an appointment when I need him, but I can't do that now.

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    2. I can't drink coffee, even in small amounts. There goes that idea. I read about that, too.

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    3. Good luck. I hope you get relief, soon.

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  16. Wow, I just took a wild-card chance to call my neurologist, and by some quirk of fate, he was available to take the call and his secretary (who does not know me at all) put me through. That has *never* happened. So I talked to him. He said he saw my case from the ER last week, so he knew why I was calling. He basically said that he'll do a blood patch on me if things aren't better by Sunday. The spinal tap was on Friday, so he said wait a week, and after Shabbat if there isn't enough improvement, come on Sunday and he'll do the blood patch. I'm so glad I called! Alice, you got me thinking about contacting him. Thanks. :)
    It's also yet another reminder how my neurologist is an amazing mentch.

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  17. Hope you feel better soon, Sarah. Wish I were close by so I could come see you.....

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  18. Hope you are feeling better soon and get the help you need to get your kids where they need to be, etc. Sending positive thoughts for healing and the help you need to you!

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