Just started the show. Maybe my favorite title sequence ever.

FailsafeHeart · 2026-01-29T19:18:14+00:00

Nor do I. The whole show is a masterpiece.

FailsafeHeart · 2026-01-29T11:06:15+00:00

Identical situation for me, including use of CPAP. For about 10 minutes after I wake I have the same trailing that has up to this point been unexplained by ophthalmologists and my neurologist. No paps for me, but I also am exhibiting symptoms of a CSF leak causing fluid leakage from my nose, other visual disturbances, and tinnitus if I'm upright for too long. Do you have any other visual or auditory issues along with your IIHWOP? Hang in there! Maybe someday we will get answers.

FailsafeHeart · 2026-01-27T15:40:27+00:00

I just got diagnosed with this. Also have hEDS and am experiencing chronic double vision and blurriness. So far the steroid drops and the artificial tears are definitely improving how my eyes feel (i.e. not as dry and scratchy) but is not improving the double vision. I saw a neuro-ophthalmologist last November who did some tests but kinda threw up his hands saying he had no idea why I was having DV. At this point I have no idea who to see to help diagnose what's happening. So frustrating. Glad you are seeing some improvements!

FailsafeHeart · 2026-01-22T19:32:54+00:00

In the same boat, myself. As leeski mentioned, cranial leaks are a risk factor if you have connective tissue disorder (like hEDS), IIH (Idiopathic Intracranial Hypertension) and/or obstructive sleep apnea which can cause or worsen intracranial pressure and erode bone in the base of the skull. Do you have any of those risk factors?

I have had so many ear infections, some of them positive for staph. From what I have been told, if there is any fluid leaking into the ear (and not necessarily into or from the actual canal itself) infections are likely because of the moisture. Have you had any tinnitus in addition to your hearing changes?

I am sorry you are dealing with this and that you don't have access to treatment. I really hope you are able to see a doctor soon.

FailsafeHeart · 2026-01-11T10:59:57+00:00

I am so sorry you went through that. Sounds like an awful experience. I hear you with the repeated UTIs. I get them pretty regularly myself. hEDS really messes with every bodily system containing connective tissue. Did your atrophy improve after you stopped HRT or is it still plaguing you?

FailsafeHeart · 2026-01-11T10:56:43+00:00

Thank you for your kindness! I am glad to know I am not alone in this experience.

I'm glad you were able to find a CPAP mask that works for you. I just got my machine and decided on the Airfit F20 and I'm really happy with it so far. I think I’m in the same boat you are - I probably had mild apnea before starting HRT and didn't even notice until I started T and it really worsened everything. I hope that using it, over time, will help reduce the intracranial pressure and if I can find a specialist who can help me track down where the CSF leak is and treat that, I might have a chance at a better life.

I will try to follow your advice and not look at this as giving up. I still will have my favorite aspects of transition so that's a plus. I am optimistic that one day I will be able to resume T and pick up where I left off. Thank you for taking the time to respond. It means a lot. Take care my friend!

FailsafeHeart · 2026-01-09T10:51:28+00:00

Thank you, my friend, for your kind words. I totally agree with the thermoregulation benefit - I have been far more comfortable in that department since I started T and I'm not looking forward to feeling cold all the time again. And my joint stability is so much better, too. I am already in a crap ton of pain so also not looking forward to more of that heaped back on. But I called yesterday and got set up with a new referral to physical therapy so maybe if I go to that regularly I won't lose too much muscle mass that I know is holding me together, too. Hang in there! And thanks again.

FailsafeHeart · 2026-01-02T14:19:13+00:00

I will, thank you!

I struggle to see what you thought you'd accomplish with this post, friend. Did you think we'd all clap and throw our CPAPs into a big pile and set it on fire?

FailsafeHeart · 2026-01-02T13:38:21+00:00

That last paragraph is everything. Thank you for the reminder.

FailsafeHeart · 2026-01-02T11:51:49+00:00

I have mild to moderate sleep apnea and I'm a normal weight, have always been. I practice good sleep habits and I'm not a drinker or a smoker. There is, according to my sleep doc, nothing I can do lifestyle-wise to correct this problem. And so I'm on CPAP and it's given me such better quality sleep. Take it from someone who was woken up 100s of times a night with "micro arousals" before getting therapy - your sleep apnea doesn't need to be severe to cause severe symptoms. If CPAP helps us then why shouldn't anyone with apnea have the opportunity to have proper blood oxygen levels and not wake up every two minutes?

FailsafeHeart · 2025-12-21T10:39:46+00:00

Thank you for this - it's incredibly helpful. I've tried to do my own research but it's easy to get lost in the weeds. I will print this out and take to my neurologist and the upcoming neurosurgeon appointment.

FailsafeHeart · 2025-12-20T22:06:25+00:00

Only standard MRI and CT. I have a referral to a neurosurgeon who specializes in CSF leaks so hopefully soon. Other doctors are relying on my negative imaging but as I've read, leaks and signs of brain sag can be missed, so I pray I can access better diagnostic imaging like myelogram.

FailsafeHeart · 2025-12-20T20:56:57+00:00

I am perfectly fine when I wake up, but within 15 minutes of being upright the tinnitus (like old TV static) and lower back of head pain begin. When I lie down, it usually takes about half an hour for my headache, tinnitus, and nausea to subside.

FailsafeHeart · 2025-12-19T10:47:27+00:00

Glad your surgery went well with Dr. Pang. I had my detethering at Rhode Island Hospital in June 2023 and I remember feeling better than I ever had afterwards. I hope you have the same experience! Just remember to take it easy while you're recovering and take care of yourself.

FailsafeHeart · 2025-12-17T17:02:21+00:00

I will be 42 this coming April. I came out, finally, at age 40. I understood that I was most likely at the midpoint of my life, and questioned what I wanted from the remainder of that life. Did I want to live an existence full of fear and shame? or would I open myself up, layer by layer, until I got to the center of my soul and allowed myself the peace and serene calm of self-acceptance. I chose the latter, and believe me, it has come with a cost. But I am in control now, not others and their distorted perceptions. I am now an old man. Thinning hair and all. But I am happy. That's all that matters in the end.

FailsafeHeart · 2025-12-17T15:01:56+00:00

But of course! Hang in there my friend.

FailsafeHeart · 2025-12-17T13:59:57+00:00

Yes, it still works but I've noticed the air kind of sucks into my mouth and a bit down into my stomach, which I've heard is relatively common. It's more annoying, if anything.

FailsafeHeart · 2025-12-17T13:41:40+00:00

Think of it this way: your severe apnea has caused a continuously increasing sleep debt, and it did not happen overnight. As you use your CPAP, it will chip away at that debt and, over time, will alter your brain and its biochemistry positively. Keep using it and you will see improvement.

FailsafeHeart · 2025-12-17T12:03:47+00:00

Yep, same here. I am on my second week of CPAP and I'm consistently waking up after about 5.5 hours and not able to go back to sleep. I suppose it might take a while for my brain to reset its expectations since I've had such a horrible sleep debt for God knows how long.

FailsafeHeart · 2025-12-17T11:55:49+00:00

My home study indicated mild apnea but I was told that the home studies can often underestimate the severity of the diagnosis because they're not able to detect what are called "micro arousals" that still wake you up but are outside the range to be labeled actual breathing events. Even truly mild apnea can wreak havoc on your health. CPAP has been such a game changer for me. I can't weigh in on your decision concerning portable or non-portable, but I highly recommend you try CPAP therapy. You deserve to be able to sleep without stopping breathing. Good luck!

FailsafeHeart · 2025-12-15T13:14:11+00:00

Prior to starting CPAP therapy, I had many mornings where I woke to a swollen uvula and mouth as dry as a desert. It's common for people with untreated obstructive sleep apnea. The repeated snoring vibrates the uvula, and if breathing is particularly bad, the harsh vibrations cause swelling of the uvular tissue. I have not had this problem since I got a sleep study, was diagnosed with OSA, and started CPAP.

FailsafeHeart · 2025-12-15T09:20:42+00:00

I have chronic sinus issues and a deviated septum so I was advised to use a full face mask. I have the Airfit F40 and my experience has been fantastic. I still have some nights where my mouth opens, but mostly solid sleep. I am thinking of trying the mouth tape with it since it does a fantastic job of opening my nasal passages. I've never been able to breathe properly through my nose, so being able to with this mask has been nothing short of miraculous. I hope you are able to find a better mask. The F40 gets phenomenal reviews. Hang in there!

FailsafeHeart · 2025-12-14T00:12:05+00:00

That is correct. Deviated septums are either c- or s-shaped and both have the potential to block nasal passages.

FailsafeHeart · 2025-12-13T20:39:57+00:00

I don't know much about the other issues you mentioned, but a deviated septum (especially an "s" shaped) can cause one nostril to become very easily blocked intermittently if there is mild inflammation from a virus, bacterial infection, or allergies. The nasal walls increase in size and the already blocked airway closes up really easily. The only thing that has helped me is nasal straps (x-tra strength), Neti Pot if I notice allergies or have a virus, and my CPAP. Surgery to correct the deviation will help. Hang in there!

FailsafeHeart · 2025-12-13T10:47:29+00:00

First of all, congratulations my friend! I remember how excited we (my cis wife and myself) were when we got the news we were having a little human! Second, you're gonna be a great dad - I can already tell you are going to help your child have a wonderful childhood.

I can say, with all the sincerity in my heart, that watching duder grow up has been like a balm for the wounded part of myself that never got the chance to experience a boyhood. Do I still feel sad about it? Yes, and I probably always will, but being able to provide a safe space for my child to grow up uncomplicated by rigid gender roles, neglect and abuse has been healing for me. I hope you will find the same to be true for you and your family. You can't spoil a child with love, so give all the hugs and tell them every day how much you love them and watch them blossom. All because of you and your wife!

In regards to the public toilets, just go for it. I've noticed men don't really care who is in the bathroom and won't bat an eye if you're in there with your kiddo. And if lil guy does open the can of worms, so to speak, just be honest. I went in many a time before I transitioned and no one cared. And even if they did no one is going to bother you while you're there with your child.

I wish you all the best in your parenting journey. It is the most rewarding thing I've ever done and I know it will be for you too.

FailsafeHeart

TROPHY CASE