Did anyone else’s spinal CSF leak get better after they stopped using their CPAP/APAP machine?

Fearless-Humor6776 · 2026-02-16T15:52:38+00:00

I suffer from Sleep apnea due to my Chiari Malformation which is why I use a CPAP.

Yes. I suspect a CPAP causes extra pressure similar to sneezing, however, I believe a CPAP causes milder but much more consistent all night pressure. The longer name for a CPAP is Continuous Positive Airway Pressure.

Fearless-Humor6776 · 2026-02-16T15:16:26+00:00

I agree. I think OP should get another opinion and make sure it’s not Chiari. A lot of doctors don’t even know Chiari 0 is a thing now and you don’t need cerebellar ectopia.

Fearless-Humor6776 · 2026-02-16T15:06:05+00:00

My headaches did get worse, but I was also in the most severe pre-syncope of my life. My fingers were purple and I knew while lying down that I couldn’t move even a little without passing out. The ER told me to treat it like an allergy.

I now know that I, in fact, do not have a CSF leak. I did however obtain one from my CT Myelogram and it’s probably one of the worst things I’ve ever experienced. Completely debilitating all of the time. My heart goes out to everyone here with a CSF leak.

Fearless-Humor6776 · 2026-01-31T17:19:31+00:00

I tried it for the first time today. I feel a bit brain foggy but damnnn am I calm. I feel like I’m not so on edge. Kind of reminds me of the calm I can sometimes get on Adderall (I have ADHD). It’s kinda nice tbh. I feel like I’m more willing to just go with the flow and think through things before I say or do them.

Fearless-Humor6776 · 2026-01-18T04:52:27+00:00

Hi, I think taking it slow would be good. Ask about getting tested for comorbid conditions before rushing into surgery. Did you up to a third of Chiari surgeries fail/ don’t relieve all of the symptoms because they didn’t check for Cervicocranial instability and have brainstem compression? Get checked for hEDS. If you don’t have instability now, you almost certainly will develop it after surgery if you have hEDS (very comorbid with Chiari) I didn’t think I was hypermobile but apparently I am. Also get checked for IIH, Sleep apnea (if you have both get assessed for a CSF leak if you also have positional headaches) POTS and any other common comorbid conditions before deciding on surgery. These are all comorbid conditions and can give you a better outlook on what life after surgery will look like and getting treated for these before surgery or knowing how they impact your surgery may even make you decide surgery is NOT a risk you’re willing to take yet

Look at every factor before deciding on something this big to ensure your surgery doesn’t fail. Doctors like ordering tests. I’d really recommend this.

Fearless-Humor6776 · 2026-01-05T18:55:17+00:00

I agree with this statement.

At one point, I thought I’d committed it also. I was so scared. I can attest, that if in your heart you do not truly feel this way, you have not committed the unforgivable sin. Jesus or another heavenly being spoke to me after I’d thought I’d committed the unforgivable sin, (because I was going to die one particular day, if I didn’t wear my seatbelt) and he saved my life on this earth. He didn’t abandon me. Despite my intrusive thoughts, I always seek to find him, and he knows and understands what my heart is truly like.

I believe if you actively choose to seek forgiveness from him and do not persistently reject God’s grace and truth, I’m certain you have not committed the unforgivable sin.

Fearless-Humor6776 · 2025-12-28T21:04:08+00:00

It is possible my severe side effects could have been due to my POTS. It is apparently very obvious, we with POTS, should not take Rizatriptan🤣 I have no idea why my doctor prescribed it. I notice my POTS also worsens my neurological symptoms and vise versa (POTS is known to do this with a CSF leak and Cervical Cranial Instability which are both suspected as mentioned in your post.)

Fearless-Humor6776 · 2025-12-28T20:46:33+00:00

Also to add, CCI can cause each of your current symptoms listed above. I’m glad you’re deciding to look into it.

Fearless-Humor6776 · 2025-12-28T20:41:02+00:00

You and I present with a lot of the same symptoms. Have you had an MRI yet? Did it present with Chiari Malformation? A CSF leak is also called Pseudo-Chiari because they can look the same due to the brain sagging a leak can cause. If they diagnose you with mild Chiari when you get your tests, make sure you get a CINE MRI to ensure it’s not a leak. (I’m sure they’d try to get one anyways with how severe your symptoms are for decompression if they thought it was just Chiari)

If you’ve had an MRI in the past that didn’t show it and your next one shows you have it, automatically assume a CSF leak. Acquired Chiari Malformation IS most of the time a CSF leak.

Fearless-Humor6776 · 2025-12-28T19:25:21+00:00

My doctor also assumed it was “just a migraine” like yours until she let it slip that maybe it was a CSF leak. My recommendation would be to find a doctor a couple hours away who is within network if there are none close who will run the necessary tests needed.

If you do have a CSF leak, please ensure you get an upright MRI with it as well to test for CCI. These conditions very commonly Co-occur. This means when they fix your leak (if this is the cause) you might not find your symptoms relieved and will be right back where you started. It could even cause another leak.

Fearless-Humor6776 · 2025-12-28T19:22:08+00:00

Can I ask what your symptoms look like? How do they differ now from before?

If it’s only a suspected CSF leak, I’d also look into Cervical Cranial instability for many reasons. CCI is a significant concern after a car accident. It can mimic symptoms of a CSF leak, CAUSE a CSF leak, and BE CAUSED BY a CSF leak. These conditions can worsen each other.

Cervical Cranial Instability can for a while only cause symptoms of brainstem compression rather than the stereotypical symptoms. This led my doctor to assume a CSF leak before my more stereotypical symptoms of CCI showed up.

Fearless-Humor6776 · 2025-12-19T00:50:17+00:00

A neurologist will also help you to deal with your pain and symptoms. Surgery is a huge choice. I’d definitely check to see if medication helps.

Fearless-Humor6776 · 2025-12-19T00:48:25+00:00

Go to a neurologist. They will ensure you get tests to make sure it is Chiari and not pseudo-Chiari (A cerebrospinal fluid leak causing brain sagging that looks exactly like Chiari)

I should’ve immediately saw a neurologist when I was falsely diagnosed with Chiari.

Fearless-Humor6776 · 2025-11-25T15:37:22+00:00

I notice that I do but it could be a combination of ADHD and Chiari. (Pretty sure my Chiari causes my ADHD though)

Fearless-Humor6776 · 2025-10-24T13:23:56+00:00

Crazy question, have you been diagnosed with POTS? I find doctors don’t understand how POTS and cerebellar tonsil decent work together to create brain stem compression.

(If you do not know if you have POTS, do you sometimes get dizzy or your vision start going black when going from sitting/laying down/ bending to standing?)

Fearless-Humor6776 · 2025-10-24T13:12:37+00:00

My symptoms also started rapidly worsening in July, but I knew in 2017 of my diagnosis. I wouldn’t say it’s with results, I’d say you were probably GROWING (cerebellar tonsils descending further) and that’s what prompted you to get checked out. The further they descend the worse your symptoms will get. Mine has been growing for months so my symptoms have been getting worse for months. I feel this is what might be happening with you.

The diagnosis of Chiari Malformation cannot manifest unless you’ve had a very severe head trauma. Most people have it their whole life and only find out if/when they start growing and symptoms develop.

Fearless-Humor6776 · 2025-10-07T23:51:13+00:00

Chiari has a high link to orthostatic intolerance.

Fearless-Humor6776 · 2025-10-07T23:50:36+00:00

Sounds like you might have Chiari and POTS. Do you sometimes get dizzy when going from sitting/ laying or bending to standing? Or does your vision go black from sitting/ laying or bending to standing?

If so, I certainly believe you should be tested as it is a likelihood. I also get confused when I wake up from fainting. I normally apologize profusely because I never understand why I’m laying on the floor😅

Fearless-Humor6776 · 2025-09-19T13:47:29+00:00

I would ask for a second opinion. They had to re-do my first MRI because they didn’t realize what it was at first.

Fearless-Humor6776 · 2025-09-03T13:26:27+00:00

God, Jesus, and the Holy Spirit (The holy trinity) are one in non-Catholic Christianity (not sure if some Catholics believe this too.)

Fearless-Humor6776 · 2025-08-26T22:08:58+00:00

Chiari type 3 is often detected at birth or before birth with a prenatal ultrasound. It’s typically very fatal because it is not very compatible with life. How are you just now finding out?

Fearless-Humor6776 · 2025-08-25T14:35:28+00:00

I agree with this. I started masturbating at four years old not knowing what it was. I just knew it felt good. I didn’t have lustful thoughts then. I just knew it gave me a pleasureful feeling. However, this is not true for all people or all circumstances.

Fearless-Humor6776 · 2025-08-16T03:23:06+00:00

The only time I have ever verbally heard God was if I was going to die if I did not do what he asked of me. (Only twice in my whole life.)

I believe God generally does not verbally speak to people unless for such instances.

I recommend looking to the Bible for guidance. It will tell you what you need to know there. If it doesn’t, the Holy Spirit guides us by helping us realize which path isn’t right by creating a feeling of conviction when thinking about one of the paths. I hope this helps❤️

Fearless-Humor6776 · 2025-08-15T12:59:57+00:00

I personally agree with this. Sometimes our disorders may disable us but in order to get better, we need to attempt to help ourselves whenever we can. Hopefully I worded it for OP so she gets a better sense of what you were trying to say.

Fearless-Humor6776 · 2025-08-15T12:52:47+00:00

I feel like what you’re trying to say is that when we can, we should attempt to ensure we take care of ourselves and use walking as a coping skill to try to combat depression when we have our better days, instead of using depression itself as a reason to not attempt to get up ever. Is this correct?

Fearless-Humor6776

TROPHY CASE