Episodic to chronic

[funk_mandy]

Has anyone else gone from episodic to chronic? My husband used to be on a pretty reliable schedule of being in cycle from October - May, then be in remission for 1.5 years before starting back up again. For some reason, he has not gone into remission now for almost two years. He should have come out of cycle in May of 2017 but never did. If he backs off of his Verapamil, the headaches are back within two days. I'm worried this is going to be his new normal. It used to be he could remain somewhat positive during a cycle because he knew there was an end coming to it. Not he's having a very hard time dealing with it and has sunk into somewhat of a depression.

Another odd thing happened to him the other day: he got what claims was the second worst CH he's ever had, and after giving himself a Sumatriptan injection, he said his hands and fingers when totally numb for a few minutes. Has anyone else ever experienced that?

It's frustrating that Sumatriptan injections seem to be the only way for him to get any relief, as I have read from others' experiences that they get rebound headaches from them and think that their cycles actually last longer when they're using the injections. He's had very mixed results with oxygen. It doesn't abort the headaches, only dulls the pain a little. He has the correct mask but can't seem to find an affordable source to get tanks of oxygen. He tried the D3 regiment last fall but stopped after getting blood work done because his doctor told him his D3 levels were way too high. Has anyone else had to stop the regiment because of that? He also tried mushrooms with no help, although maybe he needs to take it more often to get the results. I feel so overwhelmed by all the information out there that I'm not even sure we're doing any of this correctly!

[CHfather]

'mandy, I'm sorry for your husband's situation, and I know it's very rough on you, too.

Let's start with O2.  I take it he's not using it at all right now, because he can't get tanks affordably.  Not sure exactly what that means, but many people find that welding oxygen is easy to obtain and less expensive over the long run than medical O2.  Can tell you more about that if you want.  You say he has the correct mask: Do you mean the "Optimask" or "ClusterO2 Kit" that is made specifically for CH, or do you mean he has a standard non-rebreather mask?  I'm going to say that 90-plus percent of people who use oxygen in the most effective way get excellent aborts -- flow rate of at least 25lpm; special mask; tanks (not a concentrator); effective breathing technique; and quickly drinking an energy shot at the start of the attack.  If he wasn't doing it all that way, he should try again.  We can walk you through it.  (I'm going to guess that it might be hard to get him to try O2 again -- It's a perfectly reasonable but sometimes frustrating thing about people with CH: they just don't want to get their hopes up again and then be disappointed.)

I can't comment on that effect of the Trex injection, but do you/he know that the injections can be split so each one is a smaller dose?  Most autoinjectors deliver 6mg; but virtually no one needs more than 2mg, or 3mg max, to stop an attack.  A lot less expensive, too. Here's a file. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Note also that many people are getting sumatriptan in vials with syringes so they can administer their own doses.  

His doctor was almost certainly wrong about his D level being too high.  Strongly urge you to directly contact Batch (who developed the D3 regimen, and who will be happy to help you -- do not hesitate to reach out to him).  Send him a message from here: https://clusterbusters.org/forums/profile/17422-batch/

Shrooms have to be taken every five days, usually at least three times and generally more for people with chronic CH.  Triptans block the effectiveness of shrooms, so he can't use the Trex while busting with MM. 

 

[Racer1_NC]

I second CHFather's O2 statements.

To the first question...yes.....someone can go from episodic to chronic....and back again. I know first hand because it happened to me.

Now...I want you to take the following as just another piece of information from someone's experience, not as full on truth. Keeping that in mind I'd like to address Verapamil. Verapamil if often one of the first drugs a doctor will prescribe for CH. I know it sure helped me.....at first. I was on it for several years. At first when the cycle ended I could taper off and be drug free until the next cycle. After a time that changed.....the cycle would appear to be gone but if I tried to taper off, the CH would return. Enter the "controlled chronic" stage...and then the "not so controlled chronic" stage.

After having quite enough of my head hurting I decided to make changes....tapered off verapamil during a low cycle while trying every known alternative...repeatedly. It took a while....a good while....but my head is now clear enough to just use D3 to stay PF. I know the CH is there.....just below the surface. Those "funny feelings" come every once in a while causing me to up the D3 for a while. I'm not cured. CH changes, adapts and never really is far away. I know that tomorrow I could wake up running for the O2 tank, but for now....head wise life is good.

I'm not a doctor. Just someone with CH that believes continued Verapamil use turned me chronic for a while. As stated before...this was my experience. Everyone else in the world could be different.

[funk_mandy]

2 hours ago, CHfather said:

'mandy, I'm sorry for your husband's situation, and I know it's very rough on you, too.

Let's start with O2.  I take it he's not using it at all right now, because he can't get tanks affordably.  Not sure exactly what that means, but many people find that welding oxygen is easy to obtain and less expensive over the long run than medical O2.  Can tell you more about that if you want.  You say he has the correct mask: Do you mean the "Optimask" or "ClusterO2 Kit" that is made specifically for CH, or do you mean he has a standard non-rebreather mask?  I'm going to say that 90-plus percent of people who use oxygen in the most effective way get excellent aborts -- flow rate of at least 25lpm; special mask; tanks (not a concentrator); effective breathing technique; and quickly drinking an energy shot at the start of the attack.  If he wasn't doing it all that way, he should try again.  We can walk you through it.  (I'm going to guess that it might be hard to get him to try O2 again -- It's a perfectly reasonable but sometimes frustrating thing about people with CH: they just don't want to get their hopes up again and then be disappointed.)

I can't comment on that effect of the Trex injection, but do you/he know that the injections can be split so each one is a smaller dose?  Most autoinjectors deliver 6mg; but virtually no one needs more than 2mg, or 3mg max, to stop an attack.  A lot less expensive, too. Here's a file. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Note also that many people are getting sumatriptan in vials with syringes so they can administer their own doses.  

His doctor was almost certainly wrong about his D level being too high.  Strongly urge you to directly contact Batch (who developed the D3 regimen, and who will be happy to help you -- do not hesitate to reach out to him).  Send him a message from here: https://clusterbusters.org/forums/profile/17422-batch/

Shrooms have to be taken every five days, usually at least three times and generally more for people with chronic CH.  Triptans block the effectiveness of shrooms, so he can't use the Trex while busting with MM. 

CHFather,

This is the mask we bought for him:

http://www.clusterheadaches.com/ccp8/
I will ask him to look into welding oxygen. The last he looked into getting an Rx for oxygen, our insurance wouldn't cover any of it, and it was over $100 per canister. I will also reach out to Batch and get his thoughts on being too high in D3. My husband's sister is a nurse, and she told him it would be about impossible to do any sort of damage to himself on the D3 regiment, but his doctor was pretty adamant that he cut down on the D3. If he can get to where he's been off Sumatriptan for 5 days, I'll have him try the MM again. I think he tried them twice over a several week time period. But does Verapamil block the MM? And we just had a new pharmacy built in the next town over that will carry vials and syringes for him to get the Sumatriptan at a cheaper price and lower dose. We hadn't had any luck getting one of the big chain pharmacies to do that previously. He sees his primary care doc again on Wednesday, so he can get a new script for it to send off to the new pharmacy.

Thank you for your advice and words of encouragement. My husband isn't techy, so I'm trying to research and get as much info for him as I can. I sure wish someone would come up with a cure for this!!

[funk_mandy]

1 hour ago, Racer1_NC said:

I second CHFather's O2 statements.

To the first question...yes.....someone can go from episodic to chronic....and back again. I know first hand because it happened to me.

Now...I want you to take the following as just another piece of information from someone's experience, not as full on truth. Keeping that in mind I'd like to address Verapamil. Verapamil if often one of the first drugs a doctor will prescribe for CH. I know it sure helped me.....at first. I was on it for several years. At first when the cycle ended I could taper off and be drug free until the next cycle. After a time that changed.....the cycle would appear to be gone but if I tried to taper off, the CH would return. Enter the "controlled chronic" stage...and then the "not so controlled chronic" stage.

After having quite enough of my head hurting I decided to make changes....tapered off verapamil during a low cycle while trying every known alternative...repeatedly. It took a while....a good while....but my head is now clear enough to just use D3 to stay PF. I know the CH is there.....just below the surface. Those "funny feelings" come every once in a while causing me to up the D3 for a while. I'm not cured. CH changes, adapts and never really is far away. I know that tomorrow I could wake up running for the O2 tank, but for now....head wise life is good.

I'm not a doctor. Just someone with CH that believes continued Verapamil use turned me chronic for a while. As stated before...this was my experience. Everyone else in the world could be different.

That seems to be what's happening to him.... Verapamil at first was like the miracle drug that made them go away. But he's had to up his dose and can't wean himself off of it without the headaches coming back with a vengeance. Thank you for the advice. He got off of the D3 regiment due to his doctor thinking his D3 was too high, but I think I'm going to tell him just to get back on it. It can't be any worse for him than pumping himself full of Sumatriptan every day.

[CHfather]

'mandy,

Yes, that is the mask.

Verapamil at fairly low doses (less than 360mg/day) doesn't seem to block the effects of busting, or at least not to block them fully.  I think we just don't know about the effects of doses higher than that.

Getting back on D3 will almost certainly help him, as Racer said.  Gotta take the whole regimen, as I'm sure you know.  

There might be an effective pharmaceutical treatment available soon.  Erenumab (sold as Aimovig) has shown itself to be quite effective against migraine, and studies have shown that it should also work against CH.  It's available now for migraine.  The long-term effects haven't really been studied at all. For now, it seems like D3 is a better alternative. 

[Blackbird]

Mine CH morphed from acute to chronic and stayed chronic for years. Unfortunately, I was busy being pregnant and nursing and couldn't treat with anything but Tylenol and Advil. Over the past two years they've slowly changed back to episodic, after aggressive treatment with every medicine, alternative and otherwise, I could think of:)

[jon019]

Hi mandy,

….yup... what CHf has already said...and I am alive and sane because of oxygen....and the D3 regimen sure can't hurt.....

….episodic to chronic occurred for me...after 23 yrs....it wasn't nearly as bad as I anticipated...

….verapamil worked well for me for yrs.....tho I had to increase dosage from 480 mg/dy (reported sweet spot for clusterheads) to over 1000 mg/dy in high cycle...and back to 480 in low cycle.  The immediate release worked whereas the sustained release did not. Have seen many reports that reflect Racer1's experience....i.e. they felt that verapamil was instrumental, or at least a contributor, to going chronic from episodic. I was never sure...but could be...

….one other note....I use Zomig nasal spray (5 mg) for my "last resort abort" triptan....99+% effective for me in 5-8 mins, without side effects and rebounds....none of the effects I've seen or heard re sumatriptan (Imitrex)...may be just me...just as expensive but worth a try....

Best

Jon