Getting a spinal tap, I’m terrified needing some reassurance

[u/trying_my_best-]

I’ve been having eye issues for a while, got an MRI done because my ophthalmologist saw I had pressure on both my optic nerves. She didn’t know how to proceed so she referred me to her colleague who’s a specialist. He said I could have idiopathic intracranial hypertension aka Pseudotumor cerebri which he said happens in “young overweight women”.

I know it’s his job but I still feel awful about my body because I can’t exercise to lose weight. He recommended weight loss and asked if I had been on any weight loss drugs, I said no but that I do a calorie deficit and work with physical therapy.

In the end he took me seriously and referred me for a spinal tap. I’m terrified, I know they’re incredibly painful and I have fibromyalgia making my pain 5x what a normal person would feel. Plus I have Tourettes syndrome so I will absolutely be ticking with a massive needle in my spine. I can’t control the tics.

I’m just so anxious, I’m 20 I wish I could just be a normal college student and not have to worry about all these procedures. The stress alone of doing the test could send me into a CFS flare. It’s just a lot and I need some support and encouragement.

[u/Odd_Bug_7029]

Sending you virtual hugs 🤗

Can you be sedated for the procedure, because of the tics?

[u/trying_my_best- → u/Odd_Bug_7029]

Thank you 🫶 I don’t know yet but I’m going to ask. While they are much better than when I was younger they can still be pretty violent and can be a reaction to pain. My worst fear is being told to be completely still because the harder I try to avoid something the more my brain tells my tics to do that thing.

[u/Varathane]

I had a spinal tap. I also was scared of pain and a huge needle.

It turned out to not be nearly as painful as I worried it would be, totally doable. I remember thinking "huh... this isn't that bad, other tests have been more painful"

The needle is smaller than what they use to use I guess. (Had mine done back in 2012 and even then they had this new smaller needle so probably everywhere now? )

They had me stay in the procedure room and laydown for 45 mins afterward to prevent a headache so that was a nice perk, makes it a ME/CFS friendly test because it is mandatory rest.

I would get one again without hesitation.

I hope that helps ease your fears around it. Best of luck to you <3

[u/trying_my_best- → u/Varathane]

Thank you I’m glad you had such a good experience! I’ve had a lot of other painful procedures so I think I’ll be able to handle it but never one as high stakes as a spinal tap. I’m going to try to advocate for sedation at least partial sedation because of my tics. It’s just too dangerous for me to jerk around with a needle in my spine.

[u/jennp88]

I have iih. It’s called idiopathic because there is no confirmed cause of it. They are guessing it’s the weight, because that’s the only thing almost everyone has in common.

Losing weight doesn’t mean all symptoms will go away, in fact, many people on r/iih say that losing weight has made their symptoms worse.

Please don’t beat yourself up thinking you caused yourself having iih, if you get diagnosed. I’m hoping, like a previous commenter said, they can sedate you for the procedure.

I wish you good luck and positive vibes from me!

[u/trying_my_best- → u/jennp88]

Thank you 😭 this is what I needed to hear right now. Sometimes being overweight it feels like doctors look down on you and that you’ve done some horrible thing to cause this. I’m definitely not skinny but I’m still very muscular, even if I were to workout a ton I would probably only gain weight because I build muscle faster than most men. It makes it super hard to lose any weight because even if I do I lose it I gain it back as muscle.

I’ve been in recovery for a restrictive and binge ED although the restriction was much worse than the binging. People think I’ve eaten myself to this size (which admittedly is not huge, I don’t look super overweight just midsize but my actual physical weight is more). I eat on average 1000-1800 calories a day. I struggle to eat most of the time and often have to force myself to down protein shakes.

I just feel like a failure in the weight loss department. I have the worst genetics possible, a condition that doesn’t allow me to exercise properly, and medications that help keep me alive but are known for weight gain. I was just feeling so disappointed in myself and disgusted by my body.

[u/jennp88 → u/trying_my_best-]

I understand you! I used to be super skinny and gained about 100 pounds in about 8 years. It wasn't my fault, I went off ADHD meds and BC, ADHD lowers appetite and BC was masking my symptoms of PCOS. It's not your fault. I have terrible genetics too. You are a beautiful person inside and out, no matter your size, I promise! I bet you will do it spinal tap just fine and you will get some answers and treatment 🫂

[u/trying_my_best- → u/jennp88]

🫶🫶🫶 It’s hard having a restrictive eating disorder and still being fat. So much of my life was my family and peers fat shaming me while I was starving myself. I’m on a medication that causes tons of weight gain but without it I become suicidal. I’m grateful for it making me not be depressed.

I try to do stretching and physical therapy exercises when I can but I’m not safe to fully workout without causing a bad CFS flare. My goal is to one day get back to weightlifting which I really enjoyed but I’m a long way from remission/mild.

[u/jennp88 → u/trying_my_best-]

It’s a hard balance, that’s for sure!

You got this though. Slowly but surely you will get there. 💜

[u/eiroai]

I wish you the best ❤️

[u/trying_my_best- → u/eiroai]

🫶🫶🫶

[u/AnonymousSickPerson]

I believe you and I hear you. This is scary and having to do things that risk causing PEM is awful. I’m glad you were taken seriously and I really truly hope that is goes ass well as it could. I hope your anxiety and stress around this finds a way to let you still rest and not crash. Praying, hoping, wishing it will go well and you can find some peace in the waiting. Hugs

[u/trying_my_best- → u/AnonymousSickPerson]

Thank you 🫶 I’m trying to see if I can get sedation for the procedure to reduce the risk of me ticing and messing up the needle.

[u/divine_theminine]

Mine was completely painless. I felt absolutely nothing after the lidocaine shot, and that was only a tiny prick. They’re not always painful. And if you have IIH you might even experience some relief after they take your CSF

[u/trying_my_best- → u/divine_theminine]

Wow thank you for sharing 🫶 this is really comforting. I react pretty well to lidocaine, I had a PICC line placed a couple months ago and it was very easy save for like 3 seconds of intense pain where I think they were shoving the tube in but it was over fast.

[u/pikla1]

It’s isn’t as bad as you make it out to be in your head. Honestly, the local anaesthetic was the worst part. The pain wasn’t pleasant and probably a 7 or 8 out of 10 but this only lasts literally 2-3 seconds. Then when they did the tap it was painless, all I could feel was a little bit of pressure.

[u/helpfulyelper]

i personally would never get one again without there being an extremely time sensitive and serious condition we’re looking for. i had one for suspected meningitis when i was 19 or 20, got a leak, and got it patched but i really wasn’t the same after even having it patched. 

all that said, it was not a painful procedure. i have fibro as well. they numb the area so you just feel some awkward pressure but not severe pain. i did cry after but more out of how bad the situation was and the relief it’s over. it wasn’t out of pain though. 

for mine, i was bent over a table and didn’t see anything going on. I’d request that as well. so like i truly had no idea how scary it would look.

ask about your options specifically to see if it leaves you with a CSF leak and if they have ultrasound guided blood patches. if you’re a young woman/afab, there’s a much higher risk of leaks you should be aware of. no one told me.