family member with CH, not diagnosed yet, very scary

[ams11355]

my son has an appt with a neurologist on fri 10/14. this is his 3rd cluster episode, he goes for 4-5 years with no CH between each episode. this one has lasted 5 days so far. the worst day he had 3 CH. he has not been able to go to work, he is a driver. The last two episodes lasted  between a few days to about a week. he had a CH at 2:30 am, very severe, could hardly talk. he just moved out of the house, lives alone so his dad and I have been going over when he has an attack, he doesn't seem to like to be alone when they occur. can't blame him. we are about 20-25 min away. yesterday I left work early when he had a CH at noon. he also suffers from anxiety and depression so this is hitting him hard. any advice is appreciated. he is on meds for the mental illness and is concerned about having to take more meds.

[Pebblesthecorgi]

Very sorry he is going through this war.  First and foremost he must avoid becoming a victim.  What I mean is remain perceiving himself as a normal productive person who has a problem that needs periodic attention.  Stay strong and defiant.  Do not tlet the beast control his life.  Encourage optimism even though in the middle of an attack things seem helpless.  It is not a helpless situation.  He needs to take cantrol and educate himself on available treatments and then partner with a provider to get access to the resources needed to do battle.

 

First and most important get the correct diagnosis. Cluster headach diagnosis can usually be made on history alone and the absence of other findings.  Most folks nowadays get an MRI or CT scan but they are almost always negative.  If the doctor is equivocal on the diagnosis get another opinion.  Avoid a "lets see if this works first" approach

 

If you get a cluster headache diagnosis  get the Oxygen right away:  Presciption for high flow O2 at 12-15 LPM with a non rebreather mask to start.  If your doctor doesn't want to prescribe or waste your time with other things first; get another doctor who reads and stays up to date.  There is not a single credible source in the medical literature that doesnt suggest O2 therapy as a primary abortive.

 

Have him read about the D3 regimen and start it.  Follow the protocol to the letter.  I'd link it for you but I dont know how.  Someone will.  Imitrex injections may be offered and do work but try and cut the dose in half or a third.  Nasal has some effectiveness but not like a subq injection.  Pills are worthless to abort..   Imitrex is a two edged sword and best to avoid is possible; sometimes it is not possible so don't feel bad if it comes to that.   Prednisone will help kill a cycle but must be used aggressively and there are side effects.  Same for Verapamil, depakote and lithium.

 

There is no new information in what I have written here.  This site is well organized and accessible.  There are many members with lots of experience and wisdom.  It is a strong tight community.  Read the pinned info and take notes.  Go through treatment options systematically and consider busting alternatives only after careful research, self education and proper reflection.  Busting can be a godsend but it doesn't work for everyone and everyone doesnt have to bust.

 

It is good your son has strong family support and he is lucky you love him so much.  Help him direct his own treatment and encourage him to live normally with the beast doing battle at times.  Encourage him to educate himself and participate in his care.  Discourage him from becoming a victim.  He might lose a few battles but he has the resources, like this site, to win the war.

 

Good luck

[ams11355]

Very sorry he is going through this war.  First and foremost he must avoid becoming a victim.  What I mean is remain perceiving himself as a normal productive person who has a problem that needs periodic attention.  Stay strong and defiant.  Do not tlet the beast control his life.  Encourage optimism even though in the middle of an attack things seem helpless.  It is not a helpless situation.  He needs to take cantrol and educate himself on available treatments and then partner with a provider to get access to the resources needed to do battle.

 

First and most important get the correct diagnosis. Cluster headach diagnosis can usually be made on history alone and the absence of other findings.  Most folks nowadays get an MRI or CT scan but they are almost always negative.  If the doctor is equivocal on the diagnosis get another opinion.  Avoid a "lets see if this works first" approach

 

If you get a cluster headache diagnosis  get the Oxygen right away:  Presciption for high flow O2 at 12-15 LPM with a non rebreather mask to start.  If your doctor doesn't want to prescribe or waste your time with other things first; get another doctor who reads and stays up to date.  There is not a single credible source in the medical literature that doesnt suggest O2 therapy as a primary abortive.

 

Have him read about the D3 regimen and start it.  Follow the protocol to the letter.  I'd link it for you but I dont know how.  Someone will.  Imitrex injections may be offered and do work but try and cut the dose in half or a third.  Nasal has some effectiveness but not like a subq injection.  Pills are worthless to abort..   Imitrex is a two edged sword and best to avoid is possible; sometimes it is not possible so don't feel bad if it comes to that.   Prednisone will help kill a cycle but must be used aggressively and there are side effects.  Same for Verapamil, depakote and lithium.

 

There is no new information in what I have written here.  This site is well organized and accessible.  There are many members with lots of experience and wisdom.  It is a strong tight community.  Read the pinned info and take notes.  Go through treatment options systematically and consider busting alternatives only after careful research, self education and proper reflection.  Busting can be a godsend but it doesn't work for everyone and everyone doesnt have to bust.

 

It is good your son has strong family support and he is lucky you love him so much.  Help him direct his own treatment and encourage him to live normally with the beast doing battle at times.  Encourage him to educate himself and participate in his care.  Discourage him from becoming a victim.  He might lose a few battles but he has the resources, like this site, to win the war.

 

Good luck

Thanks for your reply. I have been reading about the different treatments including the alternative ones. Do CH sufferers keep O2 around at all times? Even people like my son who have episodes once every few years?

[Rod H]

Yes I always have o2 on hand. You never know when the beast will show.

[Pebblesthecorgi]

In my home, in my office in my car.  Its cheap, effective and works best if you get on it early.  The tanks might get dusty but they are a security blanket.  Better to hit it early and not have needed it than wait for the beast to set up.  Multiple regulator are cheap on Ebay, Amazon and other sources so don't rent one if you can help it.  Usually the supplier (if they know the diagnosis) will give you 4-6 tanks to start.  Some folks buy a big M size tank to handle the volume while in cycle. 

[CHfather]

Here's the D3 link: https://clusterbusters.org/forums/topic/1308-d3-regimen/

He should think about "triggers."  Here's a list (and more in the follow-up posts): https://clusterbusters.org/forums/topic/4568-triggers/

He should consider melatonin at night, starting at maybe 6-9mg.

Here's a paper about oxygen: https://clusterbusters.org/oxygen-information/   As others have said, oxygen is the best thing he can have for aborting attacks: highly effective, no side effects. (While I agree with Rod H's post, you/he might be concerned about the monthly cost of having O2.  There is a tradeoff there for people with cycles that are typically years apart.)

Drinking an energy shot (such as 5-Hour Energy) at the first sign of an attack will often reduce the severity of the attack, or even sometimes abort it.  A very strong cup of coffee can sometimes be enough.

Experiences with oxygen suppliers are not always positive, because often they have not had a customer with CH before.  If he gets an oxygen prescription, please check with us. You will want to call the O2 supplier and make sure they know what they're doing before they bring you anything. There's a good likelihood that they'll give him the wrong stuff if you don't.  Please work hard to get this prescription.

Some people find that putting their feet into a bathtub with very hot water will ease an attack.

This is a thorough discussion of treatments and of the current activity to develop better treatments, written by the founder of ClusterBusters:  https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

 

A note to you.  My daughter has CH.  It's a horrible thing for a parent to have to see.  You can help make it much better for him, but he is still going to suffer from time to time.  If he wants you there with him, that's good.  Be aware that he might want you to leave him alone during an attack, and don't let that hurt your feelings.

[ams11355]

Here's the D3 link: https://clusterbusters.org/forums/topic/1308-d3-regimen/

He should think about "triggers."  Here's a list (and more in the follow-up posts): https://clusterbusters.org/forums/topic/4568-triggers/

He should consider melatonin at night, starting at maybe 6-9mg.

Here's a paper about oxygen: https://clusterbusters.org/oxygen-information/   As others have said, oxygen is the best thing he can have for aborting attacks: highly effective, no side effects. (While I agree with Rod H's post, you/he might be concerned about the monthly cost of having O2.  There is a tradeoff there for people with cycles that are typically years apart.)

Drinking an energy shot (such as 5-Hour Energy) at the first sign of an attack will often reduce the severity of the attack, or even sometimes abort it.  A very strong cup of coffee can sometimes be enough.

Experiences with oxygen suppliers are not always positive, because often they have not had a customer with CH before.  If he gets an oxygen prescription, please check with us. You will want to call the O2 supplier and make sure they know what they're doing before they bring you anything. There's a good likelihood that they'll give him the wrong stuff if you don't.  Please work hard to get this prescription.

Some people find that putting their feet into a bathtub with very hot water will ease an attack.

This is a thorough discussion of treatments and of the current activity to develop better treatments, written by the founder of ClusterBusters:  https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

 

A note to you.  My daughter has CH.  It's a horrible thing for a parent to have to see.  You can help make it much better for him, but he is still going to suffer from time to time.  If he wants you there with him, that's good.  Be aware that he might want you to leave him alone during an attack, and don't let that hurt your feelings.

I appreciate all of the replies and suggestions. We went to the MD yesterday and got the definitive diagnosis of CH, and got 2 prescriptions: Topiramate and sumatriptan spray. The spray would be for when he is at work and wants to abort an attack. (He is a driver). The spray wasn't covered, needs authorization. I don't know if insurance will give the auth, we paid out of pocket $300.00 in the meantime. He is afraid to use it do to the side effects he has heard of. (a tightening feeling in the chest). The MD told my son that some patients have told him they would rather have the CH!! Also, it will take some time for the Topiramate to take effect. Has anyone had experience with sumatriptan and did not get the side effects? My son just had a CH at 3:30 am and would not try the spray do to his fears of getting a panic attack from the side effects!

[Erikaleigh12890]

I am so sorry to hear about your son. I have been using Sumatriptan injections for the pst five years during my cycles. In my opinion the injections can be a life saver but they are also extremely dangerous. I have felt the chest tightness, can't really breath, overwhelming feeling. If you read through the boards or in the files you may read that 2ML of Sumatriptan is enough to abort an attack rather than the 4 or 6 ML his injections probably are. Personally I keep them on me but would only use them if I didn't have anything else to turn to like oxygen. Hope that helps a little. He could always try it so he knows what to expect if he does need to take one at work. He may need about 5-10 minutes to just chill out and calm himself down but within that time the attack will go away.

[ams11355]

I am so sorry to hear about your son. I have been using Sumatriptan injections for the pst five years during my cycles. In my opinion the injections can be a life saver but they are also extremely dangerous. I have felt the chest tightness, can't really breath, overwhelming feeling. If you read through the boards or in the files you may read that 2ML of Sumatriptan is enough to abort an attack rather than the 4 or 6 ML his injections probably are. Personally I keep them on me but would only use them if I didn't have anything else to turn to like oxygen. Hope that helps a little. He could always try it so he knows what to expect if he does need to take one at work. He may need about 5-10 minutes to just chill out and calm himself down but within that time the attack will go away.

Thank you, I will continue to encourage him. As a side note, he has been having good luck with energy drinks and Excedrin. Topiramate has some side effects too, no appetite and a tingly feeling in your hands and feet. The doctor warned us of these side effects, says patients on this medication usually lose weight.

[CHfather]

Glad the energy shots are helping.  Most of us would doubt that the Excedrin is contributing anything. Excedrin Migraine has caffeine in it, so if that's what he's using, it might be helping a little but he's taking in a lot of caffeine between it and the energy shot.

 

Many people also experience drowsiness and a kind of overall dopiness with topiramate. You might want to check www.goodrx.com for reduced prices on the sumatriptan, if he decides to use it and if your insurance doesn't cover it (which it should).

 

As I and others have said, he really should be testing oxygen as an abortive.  He can have it with him in his vehicle as a driver. Works great for most people, NO side effects.

[jms]

Oxygen - definitely. My son also has been having CH for about 15 years. He's tried several medications and now only does the oxygen. He's also starting the D3 regimen and some busting. He's had very bad side effects from the medications. He started meditation several years ago and that has helped. We still fight the beast but thanks to the people on this forum we've increased our arsenal of weapons. It can be very frustrating when things seem to be working and then suddenly they don't work anymore. I try to think positively. There is a lot more knowledge about CH now than 15 years ago. Hopefully someone will solve this mystery soon and we can all find relief. I know it's painful to be a parent with a child who suffers from this.