GLP-1 and Lowering CSF (cerebrospinal fluid)

This post is for patients who have high cerebrospinal fluid, which can complicate Tarlov Cysts treatment, and cause worse symptoms, with nerve compression on cervical cysts.

As always, talk with your healthcare provider about any medical decisions that you want to try.

In 2018 I had a very successful surgery on my sacral cysts, which gave me about 85% healing.

Prior to surgery I was partially paralyzed, had bladder disfunction, always felt like I had a UTI, I felt like I had a dagger up my rectum, my whole pelvic floor would go numb if I sat for more than 5 minutes, and was in constant 7-9 pain. I was “minimally functional’ from S1 down.

Though the recovery took a few years, I did get to a place of almost complete normalcy. I couldn’t play tennis anymore, but I could walk fine, and every other symptom was gone.

Unfortunately, I’m a more complex case, often considered a “worst case” by doctors, and have TCs throughout my spine (11 cervical), and other comorbidities like high cerebrospinal fluid, that started causes increasingly worse symptoms.

I would feel like I was having a stroke, when my whole face would go numb for 15-20 minutes. I would have a “heart attack” symptom, but my heart was in great shape. It’s called Cervical Angina, caused my the nerves sending wrong signals to the brain.

I can’t count the number of ER visits I had, walking away frustrated because they said there was nothing wrong.

I also started having severe central sleep apnea. A CPAP didn’t help, because it wasn’t obstructive apnea, but it was causes by wrong nerve signals again. I still used one, primarily to monitor how bad it was, even on the machine.

My Blood pressure would be completely random. One day it would be stubbornly high, at around 150/100, and meds wouldn’t bring it down, and then the next day it would be so low (like 90/60) that, if I took meds they could have killed me. I was constantly taking my BP, and taking meds, as needed.

I was also seeing double vision, that wasn’t eye related. I would see two copies of something, one on top of the other.

I made sure that I was completely tested by every ologist, just to make sure it wasn’t my heart, arteries, etc. but everything looked really good. My calcium score is actually zero! Other than my diseases, I am a healthy person!

It could only have been because of my neurological issues.

After consulting with one of the world’s is leading TC experts, that I had known for 9 years, she had recommended a low dose of Diamox. She said that it had often helped her worst case patients, which I was definitely worst case.

I began the Diamox, and it did help some. My problem was that it had to constantly be adjusted, because it can lower your CSF too much, which causes other problems, and it’s not the safest drug for long term use.

I decided to do my research on my own, again, and I found a bunch of new studies, mostly coming out of Europe, that had proven that some GLP-1s, particularly Tirzepitide, could lower CSF within 2 hours of administration!

I sent the research to the doctor, and she was very interested, and told me to give it a try.

Unfortunately, GLP-1s aren’t covered by insurance, for this particular issue, and I had to pay out of pocket to get started. It’s not cheap, but it was worth it, if it worked.

I started it in June of 2025, and the very next day my double vision was completely gone, so I knew that it was at least working for that.

Then the other symptoms began to go away, or get much better. I went from 50-70 apnea events an hour at night, down to below 10, and often 0. I was able to come off the BP meds that I’d been on for over a decade too.

I haven’t had a “stroke” or “heart attack” symptom since I began taking it either!

It doesn’t have to be constantly monitored, like Diamox was, and it’s wonderful to just take my shot and then not think about it again for a week.

I didn’t do this for weight loss, at all, because my weight didn’t both me, because it wasn’t due to eating. I used to joke with my doctors that I didn’t have “anover active fork”! I actually said it to an old friend who is a doctor, just yesterday, and he actually laughed harder about that than I expected….

Since having my thyroid lobe removed, and a complete hysterectomy in 2001, my weight has been out of my ability to treat.

I would also have hormonal issues with cyclical Cushings disease, which is high cortisol, because my pituitary had been crushed by my high CSF.

Well, a “side effect” of taking the Tirzepitide has been that I’ve slowly lost 30 pounds. I didn’t eat any differently, but I think that when my CSF was lowered, it took the pressure off of my pituitary, and now my body is actually working properly, for the first time in 25 years. It’s funny how the weight loss for me is a “side effect” for what I’m actually using the drug for!

It does feel good to be my old normal weight though. Not everything is in the same places that they used to be, but I’m fine with that.

I have had some different medical issues over the last few months, that are not related in any way with the GLP-1s, and what they’ve helped me with, but I’m getting well from those too now.

It’s my hope and prayer that eventually this drug will be approved by insurance for the multitude of other conditions that it’s showing promise in treating, like ours.

BTW, my doctor orders compounded Tirzepitide (they add B12) from an FDA approved pharmacy, and it comes in vials instead of the injectable pens. That way I can adjust the dose between the pre injectable doses.

It’s also much less expensive, at least for now. I believe that the pharmaceutical companies are working to bring down their pricing. I also don’t know how the new pill form would work for our situations. I would assume the same, but I’m sticking to what I know.

If you do your own research, there are many articles online that share this information. I shared one of those articles in some support groups I’m in.

As always, I pray that you find the treatments that are best for you. Keep becoming your own expert, because nobody else is going to do it for you! I try to give the best information possible, based on my experience, observations of others, research, and relationships with experts.

The longer I live with these things, the more of an expert of MYSELF I become. All of my team of doctors call me “The Quarterback” now, and they all treat me with respect, even referring their patients to me. That makes my suffering have meaning! I’m happy to help others who are follow after me.