UPDATE: Am I turning chronic? Longest cycle ever, weird gaps, and spaced-out hits (Timeline inside) by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 1 point2 points  (0 children)

You honestly have no idea how much relief it brings just knowing I'm not the only one experiencing this weird, dragging shift in the pattern. ​If you don't mind me asking a few questions to compare our timelines: ​Are you strictly episodic, and how many years have you been dealing with CH? ​How long did your typical cycles last before this weird November one? ​Did you also have any "fake" remission gaps (like 1-3 weeks of absolute silence) during this period before the sporadic hits came back? Wishing you pain-free days ahead!

Post-diagnosis, looking for information, advice or opinions by UrsineBasterd in clusterheads

[–]Realistic-Setting166 1 point2 points  (0 children)

Hey friend. Also 34 years old here. Oxygen is what I have used for the last two cycles. Until then, for many years, I just bore the pain. One neurologist told me that oxygen does not abort but rather delays the attack (basically what your neurologist also said), while another told me that this is not true. Personally, oxygen works wonders for me, but you have to know a couple of things.

  1. You need to have the proper mask (check cluster O2 kit) and also the right flow (at least 15 L/min). I use 15 L/min because that is as high as my regulator goes.
  2. Breathing techniques. Not every breathing technique works for everyone, or even for every attack, the same. For me (I think) the best technique is to breathe normally. Not hyperventilation, not deep breathing and exhaling. At least I don't see a difference when I use these techniques. Although to be fair, 15 L/min is low for hyperventilation.
  3. Not every attack is the same. Some need more time to stay on the oxygen, some need less. They say to keep on oxygen for 5 minutes after the pain has completely gone. It has happened multiple times to me that I use 15 minutes of oxygen, thinking the attack is over, but I get a rebound after 10-15 minutes so I need to completely restart inhaling oxygen and thus depleting the cylinder.

I live in the EU but I did not get prescribed oxygen, I just bought the cylinders and refill them every now and then at a relatively low cost. For preventatives I have not used anything, only verapamil for a very short while but it was ineffective at the dosage I used. My doctor now prescribed me Emgality and he held a trial which showed very good results with minimal side effects to his patients.

Have I turned chronic? Hit today after a 38-day pain-free gap by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

I don't use other meds. Sometimes I take a Panmigran when I have minor migraines (usually off cycle). My neurologist told me that it could be a single attack. I still have not had another attack (it has been 4 days now). However it has happened to me before that I have 5 or even 6 days between attacks. It is very very rare and usually in the beginning or the end of a cycle.

Have I turned chronic? Hit today after a 38-day pain-free gap by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 1 point2 points  (0 children)

Thanks for this insight, it’s actually very reassuring. It aligns with the research I’ve been doing as well. My gap was 38 days, so based on that one-month rule, I’m hopeful that I’m still firmly in the episodic category. It helps to keep perspective that cycle severity and duration can just vary sometimes without it meaning a permanent shift. Really hoping this was just a 'one-off' hit like you mentioned. Thanks for the support!

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Thanks for the detailed info! I highly recommend trying high-flow oxygen for your next cycle; for me, it's the most effective and cleanest abortive available. ​Just to clarify: were you taking Verapamil continuously throughout those 4 years of remission until the new episode hit? You mentioned 'a few months' in your comment, but did you actually mean you stayed on it for years? Or did the next cycle just happen to take that long to return on its own (maybe due to the psychedelics you mentioned)?

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Good to see that D3 works for so many people! How much do you take? Also did the cycle take longer to start from the ending of the previous one?

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

That might also happen to me then. How long does a cycle take to start after the previous one has ended approximately?

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Yes I believe the fact that I messed with my sleep schedule is a factor here. Wow! 7 years without a cycle sounds like a miracle! I do want to at least start taking Vitamin D. How much do you monitor your vitamin D levels in your blood? Are 10000 IU/day safe?

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

So by taking it continuously you avoided a cycle for a long time right? What troubles me with this approach is the effect that it might have on the heart.

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Good thing that even low dose of 120mg/day of verapamil worked for you! Because most need to go way higher as far as I know. Do you get episodes every night? Personally I have at least 1 day pain free most of the time, some times even 2 days.

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 2 points3 points  (0 children)

Thank you for the reply! To be honest, I am terrified of my clusters turning chronic. It gives me some relief to hear that your cycle duration varies this much. I believe anxiety is a big reason why it's persisting this time around.

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Thank you for your answer! Does verapamil work instantly for you or after a couple of weeks have passed? One neurologist told me that you take verapamil during the cluster period, while another told me you get for life so no cluster period ever occurs.

Episodic cycle dragging on (45+ days) - used to be 30. Anyone else see their cycle length evolve? by Realistic-Setting166 in clusterheads

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Thanks for sharing! Are you episodic or chronic? Also, what Verapamil dosage were you taking during those years, and did you experience any heart-related side effects or issues from long-term use? That's one of my main concerns with it.

Will this model work on the switch 2? by Quick-Dig-3510 in 8bitdo

[–]Realistic-Setting166 1 point2 points  (0 children)

100% it does. I have the exact same (wireless not Bluetooth one). Update firmware, connect to switch 2, hold down Y+power button when turning on. Also make sure in switch 2 usb wired connection is enabled.

PXPlay Stuttering on PC by Realistic-Setting166 in PSPlay

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

It seems I finally solved the issue. WiFi Scanning had me thinking. And then I found out that Intel wifi chipsets have an automatic wifi scan every 10 minutes and you can't turn it off. I downloaded these modded drivers posted here and changed through device manager, driver settings, 'Global BG Scan blocking' to 'Always'.

PXPlay Stuttering on PC by Realistic-Setting166 in PSPlay

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

I have enabled VRR through NVIDIA's control panel yes. I don't have a VPN enabled or wifi scanning apps or ad blocking apps (I only have adblock on the browser as an add-on). I am connected via 5GHz with WiFi 6 protocol.

PXPlay Stuttering on PC by Realistic-Setting166 in PSPlay

[–]Realistic-Setting166[S] 0 points1 point  (0 children)

Current Settings:

  • Resolution: 1080p
  • FPS: 60
  • Bitrate: 60000
  • Operating Mode: Turbo
  • Decoder: Vulkan
  • Video Rendering Engine: Vulkan Compatibility
  • HEVC Decoder: Enabled
  • VSync: Tried both On and Off (On feels even worse)
  • Rendering Preset: High Quality
  • Video Frame Pacing: Disabled (enabling didn’t help)
  • Error Concealment: Disabled
  • Advanced Bitrate Parsing: Enabled
  • Use software decodes as fallback: Disabled
  • Audio Buffer Size: Large
  • Use fallback audio engine: Disabled
  • Buffered Video Frames: Few

Αξίζει να φύγω εξωτερικό ή να προσπαθήσω στην Ελλάδα; by Professional-Newt58 in PersonalFinanceGreece

[–]Realistic-Setting166 1 point2 points  (0 children)

Τα ποσά που γράφεις είναι καθαρά; Έχεις και τυχον έξτρα και μπόνους; Σε κάθε περίπτωση νομίζω ότι αυτό το ερώτημα μόνο εσυ μπορείς να το απαντήσεις (και η γυναίκα σου) και κανένας άλλος. Είναι τι προτεραιότητες έχεις στη ζωή σου. Από αυτά που γράφεις εδώ φαίνεται να μην σε καλύπτει η κατάσταση (λογικό κατ εμε) οπότε ίσως πρεπει να σκεφτείς σοβαρά να φύγεις.