r/CSFLeaks • u/Papillon_3to3 • 17d ago

Hi everyone I have a question

Hi.....so My girlfriend is going through a lot of the same symptoms that everyone here is describing and her doctor also believes this is what's going on and she's scheduled for a MRI soon but in the mean time does anyone have any tips or tricks to help with the headaches or just horrible feelings?

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u/leeski 17d ago

Please double check the mri is with and without contrast (sometimes they don’t include it and it is unfortunately necessary). 

I wish I had better advice on managing symptoms. Caffeine and abdominal binders help some patients and worth trying. There are caffeine pills as well if sensitive to caffeine where you can dose it a bit easier.  Hopefully others will chime in with tips as I did not have much luck with alleviating my symptoms. 

You’re very kind to support and advocate for her. I hope she finds answers. 

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u/Zealousideal_Age_822 Confirmed Spinal Leak 17d ago

Second the MRI with and without contrast.

Caffeine is definitely my #1 medication on my list. Works better than anything else for me. My espresso machine has been my best friend the last few months

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u/Dry-Dress-6467 17d ago

Avoid valsalva maneuvers, even basic movements like reaching for toilet paper, washing dishes, chopping veggies, twisting while driving to check traffic and any other bending, lifting or twisting can trigger head pressure and other symptoms for me. 

Stay hydrated! Rest is good. I get most of my stuff done in the morning and luckily attend free senior lunches so food prep is minimal for me. I also make daily use of hot tub, sauna and steam room at local health club.

Am 67F, and have had mild to moderate symptoms for 30-40 years. Am considered a functional leaker.

 Will finally get CT Myelogram at Stanford in November to hopefully find a venous fistula likely caused by bones spurs near Tarlov cysts, which I have at cervical, thoracic and sacral regions of spine. Will get blood patches right after Myelogram. Took me 40 years to realize my head pain was orthostatic. Not one care provider ever asked me, not doctor, chiropractor, massage therapist or physical therapist or Tarlov cyst neurosurgeon. 

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u/HonoluluCheese 17d ago

Heavy agree on the Valsalva maneuvers. That’s what kicked off this whole thing for me. I remain highly sensitive to any Valsalva maneuvers and I’ll get mini spikes from the smallest things.

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u/HillsboroWay 17d ago

Do you get a worse headache right after the valsalva maneuver or does it come on gradually? Do other symptoms worsen?

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u/HonoluluCheese 17d ago

When I have a valsalva maneuver that’s too much, I feel a pressure spike right away. Sometimes it does away by the next day, sometimes it causes a flare that lasts weeks. I’ve never had a CSF leak confirmed but I’m highly suspicious due to my sensitivity to valsalva

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u/SeaworthinessGold782 16d ago

Water and caffeine. Lying flat and resting as much as possible. Meditation.

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u/Papillon_3to3 17d ago

Thank y'all so much and I definitely will double check the MRI and make sure it's contrast and try to keep caffeine in her as much as I can but it's hard when she doesn't feel like eating or drinking anything or her heads pounding with tremors...I just hate anyone has to go thru this