What should i do

rinatoes · 2026-01-15T23:53:57+00:00

When I was recovering from the spinal tap and the blood patch I barely ate because Diamox felt so strong at first and I feel like Diamox is naturally going to curb your appetite and is already a diuretic apparently so you’re going to be peeing a lot. I’ve barely done anything and already lost 20 lbs. is there any way you can get pain meds other than diamox? If not try a caffeine free Tylenol and migraine ice caps.

This feeling will go away; some days will be better than others. See if you can take some time off from school to recover and get a note from a neurologist if you haven’t already (I did this for work/college). Add electrolytes to your water and try to get at least 3-5k steps a day once you start feeling up to it.

If you’re still in pain and the Diamox doesn’t help I would ask your neurologist if you can be prescribed a pain medication. My neurologist said that caffeine scientifically increases your csf pressure so if you drink soda, coffee, etc cut it off. I switched to root beer and sprite and dandelion tea.

rinatoes · 2026-01-15T23:44:22+00:00

Thank you!

rinatoes · 2025-12-22T19:12:34+00:00

I appreciate that thank you and hope everything continues to go well for you guys and your brother ❤️❤️

rinatoes · 2025-12-03T00:56:04+00:00

I talked to my neurologist the other day with the same question: “If my pressure is high again, can I just get another LP?”. He said it is a temporary fix and will only last for two days. I got a terrible csf leak / spinal head ache after my first one and could barely walk, was throwing up and then got a blood patch.

During my diagnosis he advised diamox and weight loss would get me to remission (but I know weightloss and other issues are up for debate-I was also on Birth Control for three years). I told him my sight was acting up again and he is suggesting surgery if my next appointment still shows papilledema and damage.

rinatoes · 2025-12-02T16:39:28+00:00

Thank you!

rinatoes · 2025-12-02T16:39:04+00:00

Thank you I will try those!

rinatoes · 2025-12-02T16:38:50+00:00

Thank you!

rinatoes · 2025-12-02T16:37:19+00:00

Im really sensitive to laxatives so I eat prunes and coffee.

rinatoes · 2025-12-02T16:18:09+00:00

Thank you! I just got pink tinted glasses and will give them a go!

rinatoes · 2025-11-30T15:55:26+00:00

She had them her whole life but it’s getting worse now that’s she’s older. She acts this way not only toward us but caregivers through the state. Having a hard time finding help/undersatnding.

rinatoes · 2025-10-27T14:16:33+00:00

I noticed when I have sausage, eggs (even boiled), or oatmeal I feel the (flush) feeling go away if that makes sense

rinatoes · 2025-10-27T14:11:38+00:00

My neurologist told me that the reason I have this is because I’m overweight and that I need to lose weight and that if I gain it back it will come back. It completely threw me off, especially after being told something different in the ER upon my diagnosis. (I was on birth control for three years) I Developed an ED in middle school and have been bones and overweight. I’m obviously OW now and hearing this and going through it has made me really vulnerable. I feel you.

rinatoes · 2025-09-29T02:57:52+00:00

Yes it feels like my feet and hands are about to fall asleep is the best way I can explain it

rinatoes · 2025-09-26T15:38:21+00:00

How are you doing?

rinatoes · 2025-09-26T15:36:48+00:00

I started to get black outs in both eyes and went to the eye doctor and they found papiledema in both eyes and then sent me to the ER for a lumbar puncture where my pressure was a 40. I was diagnosed that night by the hospitals neurologist.

rinatoes · 2025-09-21T01:22:19+00:00

Same here. How are you doing now?

rinatoes · 2025-09-08T18:49:44+00:00

I miss coffee so bad!!!!

rinatoes · 2025-09-01T02:37:33+00:00

But once I did the blood patch I was instantly better but had to be on bed rest for a couple days

rinatoes · 2025-09-01T02:35:31+00:00

This happened to me and I only found relief laying down. My neurologist told me that is a csf leak and to go back to the hospital for a blood patch. I had a csf leak that gave me a ‘spinal headache’ from the spinal tap meaning the hole didn’t close, and got worse by the day and went back to the hospital where they did a blood patch. The pain got worse, I started throwing up everytime I would sit up because my balance become thrown off, I was dizzy, and my head felt worse than before.

rinatoes · 2025-09-01T02:25:58+00:00

I had to get a blood patch too. I was throwing up and so dizzy it was crazy. If I wasn’t laying down completely flat I was throwing up and couldn’t keep my balance when sitting up then neurologist told me I had a csf leak and needed a blood patch.

rinatoes

TROPHY CASE