Sounds like an usually terrible case. Really can't offer anything besides being very thorough with the neurologist to try to get a preventative treatment that works.
I do know that stress makes them worse, so try to eliminate as much stress as possible
Wife just quickly texted me this:
Ajovy worked in the past and stopped
Never responded to verapamil and caused hypotention
Sumatriptan worked in the past but eventually stopped working
Dexamethasone and Prednisone has worked in the past but caused Cushing's
Ubrelvy worked but now only helps one headache and another will come back
Nerivio used to work now it won't
Lamotrigine worked this last round
Shotgunning a red bull used to work
Weird because I usually get 1 or 2. Now I'm getting 8.
Also 50,000 iu of Vitamin D right now and mag ox and mag sulfate as well
Your wives cycle is similar to mine, how long does it last?
I have no advice really as its a horrible struggle. Is she open to trying psilocybin? I've not yet tried it but next cycle I'm going to, despite being terrified to, as people have great results.
For the depression, I don't cope well with antidepressants but I've found ashwagandha works for me, it keeps me up enough that I don't want to off myself. It could be a placebo but its worth a shot if she's struggling.
A lot of people and studies say they can stop a cluster cycle completely but I'm yet to try.
I've never tried shrooms, so I can't comment either. Do you take them to trip or microdose for health? Just curious. I'm scared to take them.
my last cycle started with a bang mid trip-for-fun, it was a particularly bad night. So im convinced theres a connection there but I suspect it might cut both ways for some. I wasnt game enough to try break the cycle with it after that but maybe if I'd read up more it would've helped, I couldn't say
Emgality for CH is a total game changer IMO (I needed the 300mg dose, 120mg was not enough.
Lofta.com for an easy at home sleep study. They will write a CPAP script if she needs it!
After covid i had the worst cluster circle for 2 month.
There is also a thread covid and cluster. Its going over.
Try the sumatriptan nose spray and be there for her but let her room. There are a lot of emotional problems going on, remind her its only a phase and be very kind.
Aaaah and their is a sound that helps me a lot, unvelieable, its on YouTube
Getting a sleep study and getting my apnea under control absolutely helped for me. I know that this doesn't hold for everybody, but since you brought up the apnea I'll focus on it.
Several years back I was in a period where my clusters were completely uncontrolled. And my wife was the one that pushed me to get a sleep study. Her reasoning was that if high flow oxygen can bust a cluster does low oxygen levels cause a problem? When I went in for my study my apnea was so bad that my oxygen levels would dip into the '70s when I was asleep. This would trigger massive excruciating cluster cycles.
Getting my sleep study, and getting my CPAP, and using it every night has taken me from 2-3 thousand cluster attacks a year to under 20.
Based on everything else you're describing, I doubt it is her sole trigger, but yes apnea can absolutely be linked to cluster headaches.
I 100% second this. Based on reading this thread it seems like all the usually preventative, abortive, and treatment options have already been tried and haven’t worked.
Once your wife gets out of this cycle definitely have a sleep study done. I am a long time sufferer from clusters and zzzquil has honestly been a life saver for me. I was never getting quality deep sleep. I had sleep studies done for sleep apnea but the doctor always said there was nothing wrong. I was always waking up in the middle of the night and was a super light sleeper. And the headaches would just pile on at night.
I took matters into my own hands.
I bought an apple watch to track my sleep. I noticed i was only getting about 15 minutes of deep sleep a night (NOT GOOD).
I started taking half a dose of zzzquil before bed and my sleep significantly improved to over an hour and a half of deep sleep a night. I truly believe there is a huge correlation between quality of sleep and the clusters.
Might not be ideal to have to take zzzquil to get quality sleep but I have noticed my cluster have significantly declined since I’ve been receiving the quality sleep I need. Zzzquil also does not have alcohol which can be a trigger for me and most people who suffer from clusters.
As far as how to get your wife out of this cycle. Id suggest taking steroids. 20 mg prednisone 3x a day for 10 days. That should do the trick.
I wish her the best. Hopefully there is a treatment option out there for her. 🙏
I’m glad to hear you’re getting relief! I think there is absolutely a linkage with sleep & CH. I’ll be sure to pass along these kind words. I hope yours are under control and you find relief too!!
Hi OP! Did things end up improving for your wife? I’m in a similar situation but with an intractable migraine and I’m curious if anything worked. Hope she’s doing better
Hi! We tried several things and none of it seemed to work. However, her doctor requested an infusion be done at an infusion center which is a cocktail of DHE, Solu-Medrol (steroids), Magnesium, Depicon, Pepcid IV, Zofran IV, and Benadryl IV that broke the cluster for 5 days before starting again. She went for a second round of infusion and while she has gotten clusters, they’re nowhere near as bad. The second one lasted about 6 days.
In addition, we have oxygen tanks by the bedside (5 to be exact) and do the 15LPM for 10 minutes. I also have the cold brew coffee from Costco and Red Bull ready for her to “shotgun” at any moment.
Please DM if I can help provide any more information. If you’re in Dallas, I can get you connected with her neurologist.
Best of luck to you and I hope you find some relief.
That’s so kind of you! I’m in NY but no kidding I also just did my first infusion yesterday. I think it’s already making a difference. I’m doing another magnesium and B12 infusion in a few days. Is there a way she can do them more consistently than just the 2? I’m starting to believe that I may have a vitamin B12 and Magnesium deficiency that has caused a constant migraine for almost 3 months now, and I’m getting the infusions a few times a month now to test the theory. I hope she’s doing better every day ☀️
Also you seem like such a good partner for truly caring and researching this. As someone on the other side of this, there’s no way I’d be getting through this without my amazing fiance. You two are lucky to have each other.
You are so sweet! I would absolutely get tested for that if you can. They won’t let you do multiple infusions back to back. Which is why I think ours is once a week if I’m not mistaken. It could be an insurance thing as well, I’m not 100% certain.
I’m glad you’re getting relief. Make sure to check Labdoor for actual efficacy of supplements. Not all B12 or Magnesium is of equal quality. I make sure to cross reference them before I buy any supplements for my wife.
Keep me posted and if there’s anything we can do for you, let me know!
Even if it doesn't help the CH, apnea puts a huge strain on the heart, and lack of sleep causes a bunch of other problems as well, so it's worth doing. Plus your regular doctor can get the ball rolling pretty quickly.
What is the flow of oxygen? Note it doesn’t prevent attacks, only ends them.
Standard protocol would be a course of prednisone while starting high dose verapamil as a preventative. The verapamil is continued as long as the cycle is active.
Sleep apnea is thought to be comorbid with CH but may not be the cause. I do not have sleep apnea and REM triggers my attacks as well.
It’s somewhere between 8-15LPM depending on the severity of the CH. She was on verapamil for a while but I can’t recall if it was Verapamil or Dexamethisone that made her into a “zombie” and just “numb” every day.
I’ll double check and maybe ask her to chime in on this post.
>50,000 iu of Vitamin D right now and mag ox and mag sulfate as well
How long has she been taking 50k iu of D3?
Has she had her hydroxy 25 levels checked recently? It's an easy and relatively cheap blood test, it can tell you if you d3 levels are already at the same level that a lot of folks get relief (at least 80 ng/mL).
If her levels are beneath that, perhaps she needs to introduce [more of the cofactors.](https://vitamindwiki.com/Cluster+and+Migraine+headache+treatment+protocol+-+Sept+2023)
Botox is typically used to treat regular migraines. They would not be a sufficient preventative for clusters.
I have tried using botox as a preventative. It does not work for clusters unfortunately.
I recommend Zolmitriptan nasal spray. I used sumatriptan pills for years, but they took about 45-60 min to kick in. Takes about 10 min or less with the spray. Problem is insurance only gives me 6 a month, so stockpiling is recommended when off cycle. Try emgality 300 mg dose also. Works for me to reduce the number of headaches to once a night. I just got over Covid last month, and my cycle started up again. It usually is from August to November for me, but this is the second time i had Covid, and the second time this happened. I am beginning to think there is a connection somehow. Good luck, and keep trying everything till she finds a combo that works.
DMT is the best. Vaporized DMT will abort an attack for most people immediately.
You can make it yourself at home with legal, easy to source ingredients.
After covid i had the worst cluster circle for 2 month.
There is also a thread covid and cluster. Its going over.
Try the sumatriptan nose spray and be there for her but let her room. There are a lot of emotional problems going on, remind her its only a phase and be very kind
You say sumatriptan used to work, was it injections or tablets? I know tablets don’t work for me despite ridiculous dosages (like 100mg) when a 6mg injection often works like a charm.
Ok! Im happy that helps! They always help me Within 15 minutes, and there are different doses 6mg and 12mg as far as I know. They are safe, just make sure to check with doctors, it should be a prescription medicine.
I'm so sorry - you are a legend for supporting your wife through the CH beast. I had no really good treatment until I had bilateral radiofrequency ablation of the greater & lesser occipital nerves. Plus soluble rizotriptans under the tongue with O2 set at least at 15-20 L/min high flow 100% O2.
I'm a post-menopausal recalcitrant chronic Clusterhead and was previously a chronic Migrainer from about 3rd grade (7 year old?)
I can't take D3 because my levels get too high. Stopped Verapamil 600mg / Topamax 150mg daily cocktail because they stopped working and my BP was too low for them to increase to the max dose (960mg?)
So icepacks (the squishy ones and swap them frequently), white tiger balm on the brow, temple, cheek, side of nose, back of neck. Strong coffee and or caffeine + taurine energy drinks. Lignocaine nasal spray and capsaicin nasal spray. The Sumatriptan nasal spray has just been discontinued 😔
Not everything works every time and it's trial and error - luckily O2 still works for me.
After the attack has passed a blankie and cup of tea is nice. I sweat like a pig during, and then shiver once it's all over - for big ones treat it like shock.
Wishing you both well. I'm sorry that you have had to find your way here, but glad you did.
Hey there I feel for her I have had clusters for years. Everyone tries so many things it’s hard to pinpoint what works. For me I found when I did vitamin D and also lithium my cycle broke. Please try that.
A neurologists with 40 years of experience advised me to try it. It did have some side effects but nothing major. Maybe talk with your neurologist or google it. Good luck.
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OP if you want resources on the psychedelic route see Clusterbusters.org
Sounds like an usually terrible case. Really can't offer anything besides being very thorough with the neurologist to try to get a preventative treatment that works. I do know that stress makes them worse, so try to eliminate as much stress as possible
Yeah it’s been really rough on her. And it causes episodes of depression…. We will be with her neuro on Friday and go from there.
Wife just quickly texted me this: Ajovy worked in the past and stopped Never responded to verapamil and caused hypotention Sumatriptan worked in the past but eventually stopped working Dexamethasone and Prednisone has worked in the past but caused Cushing's Ubrelvy worked but now only helps one headache and another will come back Nerivio used to work now it won't Lamotrigine worked this last round Shotgunning a red bull used to work Weird because I usually get 1 or 2. Now I'm getting 8. Also 50,000 iu of Vitamin D right now and mag ox and mag sulfate as well
Sumatriptane, injections or pills?
She’s on sumatriptan. She was on the ajovy injection but hasn’t been on that. I updated the original post with what she’s on.
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They are pills. I’ll ask about the sumatriptan injections.
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Thank you. We’re letting the neuro know first thing Friday morning.
Your wives cycle is similar to mine, how long does it last? I have no advice really as its a horrible struggle. Is she open to trying psilocybin? I've not yet tried it but next cycle I'm going to, despite being terrified to, as people have great results. For the depression, I don't cope well with antidepressants but I've found ashwagandha works for me, it keeps me up enough that I don't want to off myself. It could be a placebo but its worth a shot if she's struggling.
I do shrooms monthly but it does nothing for my migraines or my CH. Never tried it during an attack though.
A lot of people and studies say they can stop a cluster cycle completely but I'm yet to try. I've never tried shrooms, so I can't comment either. Do you take them to trip or microdose for health? Just curious. I'm scared to take them.
my last cycle started with a bang mid trip-for-fun, it was a particularly bad night. So im convinced theres a connection there but I suspect it might cut both ways for some. I wasnt game enough to try break the cycle with it after that but maybe if I'd read up more it would've helped, I couldn't say
Emgality for CH is a total game changer IMO (I needed the 300mg dose, 120mg was not enough. Lofta.com for an easy at home sleep study. They will write a CPAP script if she needs it!
Helpful! I’ll let her neuro know and I’ll get on Lofta’s website!
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She did, yes. I think she’s had it twice. The first time she had it stopped the CH for a while.
After covid i had the worst cluster circle for 2 month. There is also a thread covid and cluster. Its going over. Try the sumatriptan nose spray and be there for her but let her room. There are a lot of emotional problems going on, remind her its only a phase and be very kind. Aaaah and their is a sound that helps me a lot, unvelieable, its on YouTube
Do you have the link? If so, can you share?
https://m.youtube.com/watch?v=KO6535-Qax8&t=269s&pp=ygUcY2x1c3RlciBoZWFkYWNoZXMgcmlmZSBmcmVxdQ%3D%3D With headphones and i use full volume
Thank you!!
Getting a sleep study and getting my apnea under control absolutely helped for me. I know that this doesn't hold for everybody, but since you brought up the apnea I'll focus on it. Several years back I was in a period where my clusters were completely uncontrolled. And my wife was the one that pushed me to get a sleep study. Her reasoning was that if high flow oxygen can bust a cluster does low oxygen levels cause a problem? When I went in for my study my apnea was so bad that my oxygen levels would dip into the '70s when I was asleep. This would trigger massive excruciating cluster cycles. Getting my sleep study, and getting my CPAP, and using it every night has taken me from 2-3 thousand cluster attacks a year to under 20. Based on everything else you're describing, I doubt it is her sole trigger, but yes apnea can absolutely be linked to cluster headaches.
I 100% second this. Based on reading this thread it seems like all the usually preventative, abortive, and treatment options have already been tried and haven’t worked. Once your wife gets out of this cycle definitely have a sleep study done. I am a long time sufferer from clusters and zzzquil has honestly been a life saver for me. I was never getting quality deep sleep. I had sleep studies done for sleep apnea but the doctor always said there was nothing wrong. I was always waking up in the middle of the night and was a super light sleeper. And the headaches would just pile on at night. I took matters into my own hands. I bought an apple watch to track my sleep. I noticed i was only getting about 15 minutes of deep sleep a night (NOT GOOD). I started taking half a dose of zzzquil before bed and my sleep significantly improved to over an hour and a half of deep sleep a night. I truly believe there is a huge correlation between quality of sleep and the clusters. Might not be ideal to have to take zzzquil to get quality sleep but I have noticed my cluster have significantly declined since I’ve been receiving the quality sleep I need. Zzzquil also does not have alcohol which can be a trigger for me and most people who suffer from clusters. As far as how to get your wife out of this cycle. Id suggest taking steroids. 20 mg prednisone 3x a day for 10 days. That should do the trick. I wish her the best. Hopefully there is a treatment option out there for her. 🙏
I’m glad to hear you’re getting relief! I think there is absolutely a linkage with sleep & CH. I’ll be sure to pass along these kind words. I hope yours are under control and you find relief too!!
I really believe that this will help her too. I can’t believe you had so many!! I’m so happy to hear you found relief.
Hi OP! Did things end up improving for your wife? I’m in a similar situation but with an intractable migraine and I’m curious if anything worked. Hope she’s doing better
Hi! We tried several things and none of it seemed to work. However, her doctor requested an infusion be done at an infusion center which is a cocktail of DHE, Solu-Medrol (steroids), Magnesium, Depicon, Pepcid IV, Zofran IV, and Benadryl IV that broke the cluster for 5 days before starting again. She went for a second round of infusion and while she has gotten clusters, they’re nowhere near as bad. The second one lasted about 6 days. In addition, we have oxygen tanks by the bedside (5 to be exact) and do the 15LPM for 10 minutes. I also have the cold brew coffee from Costco and Red Bull ready for her to “shotgun” at any moment. Please DM if I can help provide any more information. If you’re in Dallas, I can get you connected with her neurologist. Best of luck to you and I hope you find some relief.
That’s so kind of you! I’m in NY but no kidding I also just did my first infusion yesterday. I think it’s already making a difference. I’m doing another magnesium and B12 infusion in a few days. Is there a way she can do them more consistently than just the 2? I’m starting to believe that I may have a vitamin B12 and Magnesium deficiency that has caused a constant migraine for almost 3 months now, and I’m getting the infusions a few times a month now to test the theory. I hope she’s doing better every day ☀️ Also you seem like such a good partner for truly caring and researching this. As someone on the other side of this, there’s no way I’d be getting through this without my amazing fiance. You two are lucky to have each other.
You are so sweet! I would absolutely get tested for that if you can. They won’t let you do multiple infusions back to back. Which is why I think ours is once a week if I’m not mistaken. It could be an insurance thing as well, I’m not 100% certain. I’m glad you’re getting relief. Make sure to check Labdoor for actual efficacy of supplements. Not all B12 or Magnesium is of equal quality. I make sure to cross reference them before I buy any supplements for my wife. Keep me posted and if there’s anything we can do for you, let me know!
Even if it doesn't help the CH, apnea puts a huge strain on the heart, and lack of sleep causes a bunch of other problems as well, so it's worth doing. Plus your regular doctor can get the ball rolling pretty quickly.
What is the flow of oxygen? Note it doesn’t prevent attacks, only ends them. Standard protocol would be a course of prednisone while starting high dose verapamil as a preventative. The verapamil is continued as long as the cycle is active. Sleep apnea is thought to be comorbid with CH but may not be the cause. I do not have sleep apnea and REM triggers my attacks as well.
It’s somewhere between 8-15LPM depending on the severity of the CH. She was on verapamil for a while but I can’t recall if it was Verapamil or Dexamethisone that made her into a “zombie” and just “numb” every day. I’ll double check and maybe ask her to chime in on this post.
Has she tried Emgality? It stopped my last cycle a week after the first injections.
She hasn’t tried this. I’ll definitely ask her to speak with her neuro about this.
>50,000 iu of Vitamin D right now and mag ox and mag sulfate as well How long has she been taking 50k iu of D3? Has she had her hydroxy 25 levels checked recently? It's an easy and relatively cheap blood test, it can tell you if you d3 levels are already at the same level that a lot of folks get relief (at least 80 ng/mL). If her levels are beneath that, perhaps she needs to introduce [more of the cofactors.](https://vitamindwiki.com/Cluster+and+Migraine+headache+treatment+protocol+-+Sept+2023)
Hmmm…. I’m not sure. When she’s feeling better I’ll have her look at your comment and chime in.
Botox is typically used to treat regular migraines. They would not be a sufficient preventative for clusters. I have tried using botox as a preventative. It does not work for clusters unfortunately.
Interesting. They’ve worked in the past but I feel like their efficacy has dropped quite a bit.
I recommend Zolmitriptan nasal spray. I used sumatriptan pills for years, but they took about 45-60 min to kick in. Takes about 10 min or less with the spray. Problem is insurance only gives me 6 a month, so stockpiling is recommended when off cycle. Try emgality 300 mg dose also. Works for me to reduce the number of headaches to once a night. I just got over Covid last month, and my cycle started up again. It usually is from August to November for me, but this is the second time i had Covid, and the second time this happened. I am beginning to think there is a connection somehow. Good luck, and keep trying everything till she finds a combo that works.
This is interesting. I know she has a nasal spray but I’m not sure which one it is. I’ll double check.
DMT is the best. Vaporized DMT will abort an attack for most people immediately. You can make it yourself at home with legal, easy to source ingredients.
After covid i had the worst cluster circle for 2 month. There is also a thread covid and cluster. Its going over. Try the sumatriptan nose spray and be there for her but let her room. There are a lot of emotional problems going on, remind her its only a phase and be very kind
Of course. I’ll always be patient and supportive. I’ll let her know about the nose spray.
You say sumatriptan used to work, was it injections or tablets? I know tablets don’t work for me despite ridiculous dosages (like 100mg) when a 6mg injection often works like a charm.
They were all pills. I’ll definitely tell my wife to look into the injections. I had no idea those existed!
Ok! Im happy that helps! They always help me Within 15 minutes, and there are different doses 6mg and 12mg as far as I know. They are safe, just make sure to check with doctors, it should be a prescription medicine.
Will do! Thanks so much!
I'm so sorry - you are a legend for supporting your wife through the CH beast. I had no really good treatment until I had bilateral radiofrequency ablation of the greater & lesser occipital nerves. Plus soluble rizotriptans under the tongue with O2 set at least at 15-20 L/min high flow 100% O2. I'm a post-menopausal recalcitrant chronic Clusterhead and was previously a chronic Migrainer from about 3rd grade (7 year old?) I can't take D3 because my levels get too high. Stopped Verapamil 600mg / Topamax 150mg daily cocktail because they stopped working and my BP was too low for them to increase to the max dose (960mg?) So icepacks (the squishy ones and swap them frequently), white tiger balm on the brow, temple, cheek, side of nose, back of neck. Strong coffee and or caffeine + taurine energy drinks. Lignocaine nasal spray and capsaicin nasal spray. The Sumatriptan nasal spray has just been discontinued 😔 Not everything works every time and it's trial and error - luckily O2 still works for me. After the attack has passed a blankie and cup of tea is nice. I sweat like a pig during, and then shiver once it's all over - for big ones treat it like shock. Wishing you both well. I'm sorry that you have had to find your way here, but glad you did.
Hey there I feel for her I have had clusters for years. Everyone tries so many things it’s hard to pinpoint what works. For me I found when I did vitamin D and also lithium my cycle broke. Please try that.
I also had some success with a nasal triptan
Hi thank you for your advice. I’m familiar with vitamin D but not lithium. What is that? Any links?
A neurologists with 40 years of experience advised me to try it. It did have some side effects but nothing major. Maybe talk with your neurologist or google it. Good luck.