Worst headache after spinal tap

Worst headache ever after my spinal tap 

Hi everyone, 

I hope you are all enjoying the weekend! 

I have news. I received my first shot of the COVID-19 vaccine yesterday!💥💥

In my last post, I told you that I will probably get my vaccine next week. For once things happened a lot faster than I expected. My past experience of dealing with my neuropathy has taught me that I need to be patient, or at least try to be patient, because usually everything moves sooo sloooow. 

The vaccine was pretty much done 5 minutes after I got there. They made me wait for 15 minutes afterwards just to check for any major allergic reactions, and then I was ready to leave. It's kind of strange because such a big thing feels so unspectacular when you actually do it. Just like getting the flu shot at the hospital I work at every year. 🎆

I got the Pfizer/Biontech mRNA vaccine. So far I feel fine - in terms of vaccine side effects at least..... My arm started hurting a bit last night about 2 hours after the jab. This morning I woke up with a slight headache, but nothing major. 

After all, feeling these reactions means that the vaccine is doing its job, which is good to know for sure! I've heard from other people, that the symptoms are a lot stronger after the second jab, which I will get in 3 weeks....so we will see.  

The vaccine will delay my new treatment though

I'm happy I got the vaccine, which I really didn't expect I could. On the downside though, this will postpone my infusions by another 7 weeks😖😖 

Here we are again....most things take a lot of patience. I totally understand that I have to wait for the vaccine to work, but when you are in constant discomfort and having trouble walking, 7 weeks are sooooo looooooonggggg.....

However, I have accepted it now and will do my best to distract myself. Maybe we will move our home office into the mountains somewhere again for another week or so....

But back to the neuro talk and to my spinal tap in 2014

I left off saying that Dr. Soland signed me my up for a spinal tap in his office to do some further testing for my neurological symptoms in 2014. 

Why a spinal tap?

The main thing he wanted to test for i was whether or not I had either of the autoimmune inflammatory neuropathies called Guillain Barre syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP). GBS and CIDP are autoimmune neuropathies, which lead to paralysis of the limbs. In GBS, it may even lead to paralysis of the muscles required for breathing. CIDP is basically the chronic form of GBS. 

Both diseases mainly affect the large nerve fibers. We had already ruled out that my large nerve fibers were damaged with the electroneurography (ENG). However, in rare cases, people with CIDP or GBS have a special subtype, which only involves the sensory nerves. 

If you have CIDP or GBS you can usually find a specific protein in the cerebrospinal fluid, and this is what he wanted to test for. Since we were doing this anyway, Dr. Soland also wanted to check for neurological Lyme disease and multiple sclerosis (MS) again. 

Neurological Lyme disease is a late complication of a tick bite, which can cause a huge range of weird and debilitating neurological symptoms. Basically, it's a diagnosis that is always brought up whenever someone presents with weird neurological symptoms and doctors have no explanation for them. Given that I did not even have antibodies against Lyme bacteria (i.e. I had apparently never been in contract with them), it was pretty unlikely they would find anything...but better to double check right?

I read a bit about it, and if you do have neurological Lyme disease, they can actually see these bacteria, which look like little worms, swimming around in your cerebrospinal fluid, which I think is quite freaky. They look something like this. 

I am not going to talk about this more, because obviously I don't have it. But if you are interested, here is a youtube video of the singer Avril Lavigne talking about her battle with neurological Lyme disease. 

The spinal tap itself was not pleasant but also not terrible.....

So I went into Dr. Soland's practice one morning in late March 2014 to get my spinal tap done. From what he'd told me before I expected this to be smooth and to be out and about in a blink. 

Dr. Soland did tell me before the procedure, that it can sometimes lead to a headache. He also said that young women with normal body weight are at the greatest risk of developing a headache after a spinal tap. But I thought that a little headache was no biggy and surely I could put up with this no problem, as I do whenever I have a cold or so. 

I had to sit on a bench facing the wall and Dr. Soland aimed a needle to go between my vertebrae into my spine. The mere thought of this is extreme creepy, so i tried to think of something else, as I did not see it anyway and it was not meant to be painful. 

One of his practice assistants was also in the room to hand him the supplies. At one point I heard him saying to her 'I can't get in, I think I'm on the bone.....'.🤮🤮🤮  I have to say, he should have kept this thought to himself or at least say it so that I can't hear it. 

I am not the best at dealing with wounds and blood, especially when they are on myself. So when I heard this, I noticed how I started to feel dizzy and my ears started ringing. 

My first thought was, that if I pass out now, while he had this needle stuck in my spine, this will rip quite a whole into my spine..... This thought made me even more sick, so I told them that I wasn't feeling well and I thought I had to lie down. 

At this point, the atmosphere in the room started to get a bit hectic and they moved me over to the side to lie down, all while this needle was half-way stuck in my spine.... After a while they had me sit up again, so that the liquid could come out. Somehow, I managed not to pass out and they managed to get the liquid out and the whole thing was done. 

But after the spinal tap was done it got bad.....

Steve came to pick me up at the practice and we ordered a cab to drive us home. We took the elevator downstairs and stood on the street waiting for the cab to arrive. As we were standing there, I could feel that my head felt kind of strange. A weird dizzy vertigo feeling with slight nausea. 

I had to sit down on the side of the street, and thankfully the cab arrived just in this second. As we were sitting in the cab I could feel that I was really not feeling well. I felt really dizzy and sick. 

On a side note, it was the biggest coincidence, that we actually had the same cab driver who drove us home after our wedding party three and a half years earlier. What are the odds right.....?? I still can't believe he actually remembered us.... but he did, and started chatting away how nice it was to see us again and how we were doing.....and I felt like death but did not have the nerve to explain what was going on....💀

Dr. Soland did tell me that if I did get a headache, it was best to lie down. So I rushed through the door of our apartment and headed straight to bed to lay down. As soon as I lay down, my head felt a bit better, so I just stayed in bed to rest. 

I would not call it a 'headache', more like a brain implosion...

At some point I had to go to the bathroom. So I got up and made it about half way to the bathroom when my vision went black and I kind of saw stars shimmering. My head felt like it imploded - a type of pain I had not felt before. I really don't think the term 'headache' is an accurate medical description of what I had. It was more like a head implosion - as if a vacuum was trying to suck your brain out from behind or so. 

I automatically bent down to lower my head which made it a bit better. So I walked / crawled to the bathroom bent over to keep my head down and sat on the toilet with my head between my knees. 

I could not get back into bet fast enough. After I had made it back to bed, I felt really sick and in so much pain..... I tried not to drink too much, so I would not have to get up too often. The next two and a half days I basically spend in bed in terrible pain that stretched from my head all the way down my spine. I was unable to get up at all, so I literally had to eat in bed while lying down only to crawl to the bathroom when absolutely needed. 

Steve made me food that I could eat in bed while lying down....I am glad we do not have any videos of this week..... 

Dr. Soland had told me not to take pain medication like ibuprofen, because they could increase the risk of bleeding. However, at some point the headache got so bad, and paracetamol did absolutely nothing. I called a colleague of mine, who is also a pharmacist, and asked her to go to a pharmacy to buy me some prescription codeine pills to help get the pain down somehow. 

Thankfully, she got them quite quickly and brought them over. I took some and they did seem to help a bit. At least they put me to sleep, which is all you want in that moment anyway. 

I was actually meant to fly to Stockholm with my friend V (the one who is talented at radiology😀). We had planned to visit our Scandinavian friends, we met while travelling. I was really looking forward to a weekend away with the girls, so I was determined to get better and make this flight. I think the flight was on Saturday and the spinal tap was on the Wednesday before. 

By Friday it was pretty obvious that there was no way I could go, but somehow I did not accept this and still hoped I would make a miraculous quick recovery over night. So in the morning I got up, determined to have a shower and go to the train station...... well, I did not even make it to the bathroom and had to surrender and go back to bed.... I was sooo frustrated about that....

Thankfully, at some point it got better.....

After a few days, it started to get a little bit better and I could at least make little trips to the bathroom and back. But I still could not be upright for more than a few minutes. Basically, I lived in bed for the whole week lying flat. Every time I got up I could feel this weird suction feeling, which pulled on my brain down my spine. I think I literally did not have a shower for about a week and my bed was full of stains from eating in bed....just overall a great experience.💜 

Eventually, I thankfully started to feel better, and about 8 days later I managed to get up and the headache was gone. This first shower felt soooooo gooood!

But I can tell you, this was definitely one of the worst weeks of my life for sure. And the craziest thing was - I did not see this coming at all! I probably should have researched this before and be a bit prepared but I was just (naively?) optimistic....

So apparently, what I had is called a post dural puncture headache, and is quite common. What happens is that spinal fluid leaks out into the surrounding tissue at the spot where the needle went in. This then causes the pressure in your spine to drop, which causes the headache....nice thought I know.🤮 

In the worst cases, they need to close these leaks with a blood batch, but thankfully mine eventually resolved on its own. When I called Dr. Soland after a few days telling him that I could still not get up and needed a sick leave, he did sound a bit concerned and I was worried I might need such a procedure - which temporarily put me into deeper crisis....but thankfully then it started to get better..... 

What did my clever friends say about this....?

My friend V💜, who is an anestesiologist, later told me, that in anesthesiology they intentionally use much thinner needles to do spinal taps on young people, because these headaches are so terrible and really frequent. But annoyingly nobody has told this to the neurologists yet😡 If I ever need a spinal tap again, I will have one of her colleagues do it for sure - although I really really hope I never need one again....🤞

I can assure you, that this was definitely the worst test of all the ones I had done. And I just realised I did report it in quite some detail... The next ones will be a lot more harmless to report😜

And once again, all results came back normal....

On the bright side, once again all the tests came back normal/negative so i did not have GBS or CIDP and Lyme disease and MS were definitely ruled out. Although, whether or not this is a positive aspect can be debated, because having symptoms without an explanation is about equally frustrating as being diagnosed with something. 

But I have a definite bright note😁 I did get the money for my flight back from my travel insurance. I figured I might as well spend it to treat myself after this Odyssee. So I bought myself some really nice earrings, which I am still wearing a lot today.😃😃 Retail therapy just always works for me.....(I know also not the best habit....)

And with this great cheerful story, I will let you all go into to the weekend and hope you enjoy your day off. I just realized that this post turned in to a reaally long one - so for the ones who read until the end - thank you for the effort and I promise the next one will be more manageable😃

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Categories: test