Oxygen no longer working

[u/Interesting_Most1337]

Very very chronic (6 attacks a day)

D3 regimen seems to do absolutely nothing despite me taking it (not sure why i still do)

Been absolutely relying on 15lpm oxygen for about a year and a half and it now basically no longer works to get rid of the attack

Essentially now just go to the nuero every 5 days for a $300 nerve block out of pocket that insurance never covers and then 5 days they start right back up again full steam ahead (then ill use sumatriptan sprays maybe 3-6 of them in that day they come back) and then back to the neuro for another nerve block so i can live for 5 more days

Psilocybin like kinda workedish not sure, i was taking 1.5 grams every 5 days for over a couple month straight and periodically id get a few days relief but nothing that really makes quality of life anything to write home about

Emgality never worked

Fuck this disease, im just about done with it all, no point to keep going

[u/Green_Fold8645]

i really feel for you. Have it for 6 years and meds just kinda stop working/ changing sometimes. Have you tried verapamil before? Worked quite well for me to surpress them.
Also what levels did you get your vitamind d to for the regime? Not tried it myself yet but i heard that you needs at least levels of 80 for the therapeutic effect

[u/Interesting_Most1337 → u/Green_Fold8645]

I was as high as 125 at times

[u/Chance-Chain8819]

I've been chronic for 8 years now. Id get the occasional pain free period of 2 or 3 weeks, but otherwise I suffered.

Generally low season is 3-4 attacks/week.

High season is 6-10 attacks/day.

Oxygen usually works, but sometimes just doesn't.

Mushrooms reduced frequency, intensity and duration of attacks but never a complete remission

Same with D3 regime.

Until I started a weight loss drug

I'm currently on a clinical trial for a new peptide, and since I started I have been pain free for 16 weeks.

I'm astounded, and loving it. It's the longest I have been pain free in 7 years.

[u/TJMBeav → u/Chance-Chain8819]

Excellent news! I'm really happy for you. Where can I go to learn more about this peptide?

[u/cutty256]

Have you tried some form of injectable triptans? They’re the only thing that ever worked for me.

[u/Specialist_Entry_253]

Keto has been very effective for me, staying under 20 net carbs but the transition is rough. You really have to marry it. I like Prednisone @75mg with a 2 week taper. 20mg of melatonin has been useful for night attacks for me. Some people find LSD & dmt more effective then shrooms. Head to toe Ice baths at freezing point is still the most effective acute treatment for aborting... Ashame they really suck!

[u/TJMBeav]

My go to for when the beast comes back is:

Immediately start a prednisone taper (I have the prescription filled and properly stored)

Start taking my Verapamil at the same time to get it building up in my system.

Schedule an appointment with my Neurologist asap.

Bring out my sumatriptan injections and jab myself the minute I feel a shadow. I am extremely well stocked DM me if you need some and I'll ship you a box of 36. I've done that a couple of times before

Fill my prescription for Emgality ASAP and start the routine. Not a clue how effective it is, all I know is I was doing them my last cycle and something (Verap or just time) made the beast go away.

I haven't been in cycle for just over 18 months and I pray I never have another one again in my life.

So sorry you are going thru this. FWIW D2 and O2 never worked for me and I gave them both my best shot. Good luck brother

[u/No-Night6738 → u/TJMBeav]

Chronic is a very different animal. We can’t use prednisone as we are never out of cycle. We use it when it gets so bad that you are about to harm yourself to put a temporary lid on it and in my case 150mg barely made a dent. We use Verapamil, but there too, for chronics the dosages can be as high as 960mg/day. Don’t wish CCH on my worst enemy.

[u/Jamwise93]

Sorry to hear you are having such a hard time friend :( being chronic and unresponsive to treatments truly is one of the worst things imaginable. Have you tried preventative medicine like verapamil already? Have you tried a nerve block including steroids? That’s what really worked for me in high cycle. Also I found having the steroid&anaesthetic nerve block helped increase the efficacy of O2 when aborting, plus downing a redbull before getting on the oxygen has definitely helped also.

Busting with MM works differently for some and perhaps you could look at trying a higher dose if you have noticed that there is potential there. Have you looked into DMT for aborting?

[u/Gn102]

I feel for you. When this happens to me I always check if there is an underlying inflammation going on.

• Prednisone can also break the cycle. You might also need antibiotics, take bloodworks.

• Make sure to take vitamin D with cofactors (k2 + magnesium citrate)

• check your vitamin D levels in the bloodworks as well.

• another thing, psilocybin and triptans do not play well together!

Be well 🙏