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Hack my headache after spinal tap

by (360)
Updated about 15 hours ago
Created June 17, 2012 at 7:07 PM

Wednesday evening I got a headache, I had eaten some store-bought sushi and I am guessing that something in there (probably gluten) triggered it. By 1 AM I was in so much pain I went to the ER, I have no history of headaches but a significant family history of brain aneurysms so it seemed like a wise choice at the time. They did IV fluids, pain medication, a CT scan, and then wanted to do a spinal tap. I reluctantly agreed to the spinal tap and it all went downhill from there. They had to do it twice because the Dr. missed the first time and couldn't get any fluid out. I went home Thursday morning and started to feel better thursday night. Friday morning I woke up and the second I tried to sit up I had excruciating pain in my head. This has continued, it is a regular headache if I lay flat but when I change positions it goes into worse-pain-of-my-life territory. I went back to the ER and they said I am leaking spinal fluid but the risks of fixing the leak through their usual blood-patch method outweigh the benefits in my case because of the 2 different puncture wounds and my crooked spine. They said it will slowly heal on its own with time. They prescribed zofran for nausea and vicoden for pain. I also have not been able to keep any food down since wednesday, although water is staying down fine. I am wondering if there are any supplements you would reccomend to help with the headache? Has anybody experienced this? Any other Paleo tips? Also, despite not eating since Wednesday I have put on 6 pounds, is that just water weight? will it go away when I stop the pain meds?

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3808 · September 07, 2013 at 1:28 AM

Yes, caffeine was going to be my suggestion. It's cheap, readily available, not a controlled substance, and not particularly harmful, so certainly at least worth trying. =

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1294 · June 19, 2012 at 1:22 AM

I think US wellness meats sell it? It is so easy to make in the crockpot!

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1288 · June 18, 2012 at 2:07 AM

Totally agree - I had an epidural leak after the birth of my second - they sorted it out with a patch - worked straight away. A friend at the same time had a leak too she was NHS and they would not do it to her . 8 wks of having to stay flat due to the pain with a 2 year old and a baby - not fun - go get the patch - benefit does outweigh risk - its the same risk as the tap itself! so if they thought it was so risky why did they do it in the first place. Push hard for it really worth it - that pain is no fun

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1288 · June 18, 2012 at 2:06 AM

Totally agree - I had an epidural leak after the birth of my second - they sorted it out with a patch - worked straight away. A friend at the same time had a leak too she was NHS and they would not do it - too her 8 wks of having to stay flat due to the pain with a 2 year old and a baby - not fun - go get the patch - benefit does outweigh risk - its the same risk as the tap itself! so if they thought it was so risky why did they do it in the first place. Push hard for it really worth it - that pain is no fun

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48 · June 18, 2012 at 1:16 AM

Also, I found that the longer I lay on my back, the more time I had to move around before the pain got to be too much. A little like a video game character being recharged!

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48 · June 18, 2012 at 1:14 AM

Pho from a local Vietnamese restaurant (check for MSG though!) might be a workable substitute. That's what I have used in the past. Also, the stomach issues may be from the medication, I doubt they are associated with the spinal tap (my experience is in one of the responses).

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360 · June 17, 2012 at 9:27 PM

Now if I could just convince the hubby to make some bone broth, I wish you could buy it somewhere.

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360 · June 17, 2012 at 8:36 PM

Thank you- unfortunately I live in a very rural area, my closest hospital is 30 minutes away, I am going to call the closest neurologist (which is 1.5 hours away) on Monday and try to get in with them, but waiting times for specialists in my area are unreal. I agree that this is no way to live, and I HATE pain meds, didn't take any with either of my child deliveries or my hysterectomy, this pain is worth than all of those!

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4100 · June 17, 2012 at 8:32 PM

They have IV caffeine at the hospital?? I am signing up for med school immediately!

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5 Answers

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20519 · June 18, 2012 at 2:54 AM

I've had two spinal taps, both 5 years ago, and completely understand the pain you're in. I literally felt like someone had taken a sledgehammer to my head and vividly remember having to crawl across the floor to get to the loo as I couldn't walk to it. I still cringe thinking about the agony - goosebump inducing.

Outside of the patch the hospital can administer IV caffeine OR send someone for OTC No-Doz aka Trucker Speed. I'm seriously not kidding. I believe 200mg was the dose I used, every 3-4 hours, and I was walking with the second dose. Make sure you are extremely hydrated as well. There are definitely many medical papers online, my nerd science friends went through a bunch and that's how I found/tried it.

Good luck and feel better!

306aa57660d911781231f8090c2a5619
3808 · September 07, 2013 at 1:28 AM

Yes, caffeine was going to be my suggestion. It's cheap, readily available, not a controlled substance, and not particularly harmful, so certainly at least worth trying. =

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24538 · June 17, 2012 at 7:53 PM

I'd push for the patch, I don't see how half a year of vicoden would be better for you. I've worked with women who have those same headaches after epidurals, the pain is debilitating, and it can take up to 6 months to heal. If it is going to be a tricky procedure for you shop around until you find someone who is an expert at doing those patches. Please don't accept having your quality of life impacted like this if there is a cure.

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360 · June 17, 2012 at 8:36 PM

Thank you- unfortunately I live in a very rural area, my closest hospital is 30 minutes away, I am going to call the closest neurologist (which is 1.5 hours away) on Monday and try to get in with them, but waiting times for specialists in my area are unreal. I agree that this is no way to live, and I HATE pain meds, didn't take any with either of my child deliveries or my hysterectomy, this pain is worth than all of those!

286a4ff7c362241c5c4b020df4972212
1288 · June 18, 2012 at 2:06 AM

Totally agree - I had an epidural leak after the birth of my second - they sorted it out with a patch - worked straight away. A friend at the same time had a leak too she was NHS and they would not do it - too her 8 wks of having to stay flat due to the pain with a 2 year old and a baby - not fun - go get the patch - benefit does outweigh risk - its the same risk as the tap itself! so if they thought it was so risky why did they do it in the first place. Push hard for it really worth it - that pain is no fun

286a4ff7c362241c5c4b020df4972212
1288 · June 18, 2012 at 2:07 AM

Totally agree - I had an epidural leak after the birth of my second - they sorted it out with a patch - worked straight away. A friend at the same time had a leak too she was NHS and they would not do it to her . 8 wks of having to stay flat due to the pain with a 2 year old and a baby - not fun - go get the patch - benefit does outweigh risk - its the same risk as the tap itself! so if they thought it was so risky why did they do it in the first place. Push hard for it really worth it - that pain is no fun

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48 · June 18, 2012 at 1:12 AM

Hi Tessa Jo,

Sorry to hear of your situation. I can relate because I've been through something similar.

My experience: When I was 24, I inexplicably had the worst headache of my life. As someone with no history of any health issues (looking back, I may have begun my gluten intolerance by then, though), it was surprising to have a headache so bad that I felt the need to go the ER. The doc said that a healthy 24 yr old with the worst headache of his life should do a spinal tap because the problem may be neurological, so I agreed.

I was quite angry when I later discovered that he did not tell me the associated risks before recommending it - namely an even worse headache, possible immobility that may last up to a number of weeks, and that these symptoms are more severe the younger you are. Had I known, I would have given the original headache at least another day.

Right after the spinal tap, I felt fine but began to get worse when I got home. The real kicker was the next day at work, however, when things got so bad that my whole body was eventually in excruciating pain. I requested a couple colleagues to drive me home because i didnt feel competant to drive and then started reading up while lying on my back and awkwardly supporting a laptop.

My recovery: Basically, it went away on its own in a few days. My symptoms were inability to move without intense pain in any position other than lying flat on my back. It was an interesting experience because I consider myself to have a high pain threshold and good health, but the spinal tap still made me feel immobile without Advil. I had pain medication on hand (advil) to get to the bathroom and kitchen, and just stuck it out for 3 days after which time I had gradually increased mobility with full recovery in a week. Until then, the key was lying absolutely flat on my back and minimizing any movement.

I know this is very little to go on but I figured providing any details I could remember in case there is some small nugget of information in there that might help. If nothing else, some hope from the fact that I went through something similar and it fixed itself in a few days, I hope that is the case for you too! Get well soon.

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48 · June 18, 2012 at 1:16 AM

Also, I found that the longer I lay on my back, the more time I had to move around before the pain got to be too much. A little like a video game character being recharged!

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1294 · June 17, 2012 at 8:41 PM

Bone broths with lots of gelatin and animal parts to build your body fluids back up for sure. Also, depending on how comfortable you are with alternative medicine you can try acupuncture and cranio-sacral before doing any more surgical interventions.

C77c5f4ef811f3f10476499975db747d
48 · June 18, 2012 at 1:14 AM

Pho from a local Vietnamese restaurant (check for MSG though!) might be a workable substitute. That's what I have used in the past. Also, the stomach issues may be from the medication, I doubt they are associated with the spinal tap (my experience is in one of the responses).

3ab63fb5ddb0180f2ebb077c487fbbc4
360 · June 17, 2012 at 9:27 PM

Now if I could just convince the hubby to make some bone broth, I wish you could buy it somewhere.

B23318c968ac589b87131d5b489d6e16
1294 · June 19, 2012 at 1:22 AM

I think US wellness meats sell it? It is so easy to make in the crockpot!

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191 · June 17, 2012 at 8:22 PM

AH! This is EXACTLY what happened to me a few years ago. Well, about the MASSIVE migranes after a spinal tap, I mean. It was torture and I felt like my head was in a vice grip for many days after the procedure. I also could not eat, and ended up losing some weight. After trying to wait it out for a few days, I couldn't stand it any more (the pain did not seem to be getting better) and went back to the hospital. They gave me a caffeine IV and it greatly reduced the pain in my head immediately! I was able to walk out of the hospital (after barely being able to walk at all) after a few hours and a few bags of the IV drip. Maybe this is an option for you? Ask your doc. I cannot speak for the spinal tap leak part of your situation, but I hope this at least helps the headaches. All the best.

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4100 · June 17, 2012 at 8:32 PM

They have IV caffeine at the hospital?? I am signing up for med school immediately!

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