Jump to content
ClusterBusters
Sign in to follow this  
Siegfried

Officially re-diagnosed: CH -> Paroxysmal hemicrania

Recommended Posts

Hello Friends,

How would you feel spending several years on a CH forum, convinced you have CH but then it turns out you have something else  ? :unsure:

Well that is what happened with me today. Some of you maybe remember my earlier posts where I was always talking about my kind of a-typical CH that maybe looked a bit like CH but was a different beast all together.

Today I came back from my new headache specialist (the best I ever encountered) and after going over my headache diary and especially my indomethacin test responses it turns out I have Chronical Paroxymal Hemicrania or CPH. And all the "shadows" I had is all migraine, as the indomethacin do not respond on that (otherwise it could have been hemicrania continua). 

Disadvantage of this is that, if they change my diagnosis, I will loose my compensation for oxygen (something that served me so well the past years) so I will maybe have to pay it myself. Apart from the indocin there is not much that can be done. I consider to try the Vit D regimen again but let it fine-tune by Batch so it has maybe a chance of working and I am glad to be a test case for CPH :)

Is there anyone else here on the forum with CPH ? If yes, it would be nice to know these people as CPH is much more rarer than CH.

Anyway it feels kind of weird... having always felt very good with this community but what I thought what bound us (CH) is now not there anymore. But as CPH is often called, CH's "ugly little sister" I am sure I am still a very welcome part of the family here.

All the best !

siegfried

 

  • Like 3

Share this post


Link to post
Share on other sites

Siegfried quick question? What effect did busting have on clusters ugly sister?

  • Like 1

Share this post


Link to post
Share on other sites

You most certainly are still family here Seigfried! No need to bail on us. :)

 

  • Like 1

Share this post


Link to post
Share on other sites
19 hours ago, Rod H said:

What effect did busting have on clusters ugly sister?

Hi Rod,

Good question ! I have actually never tried one of the busting methods mentioned here so I do not know if it is going to work. 

But does busing also work for chronic headaches ? Mine is chronic, which is most common with PH. In CH most are episodic with a minority chronic but in PH it is the other way around. Doesn't mean I have headache 24/7... just that I never have +3 month remission.

siegfried

Share this post


Link to post
Share on other sites

I don't know about chronic because I am episodic. So any answer I would give would be pure speculation. 

  • Like 1

Share this post


Link to post
Share on other sites

Siegfried,

Why does your neuro think you can't have CH, CPH and migraine ? Or do you think that ? We have encountered so many cluster headache patients (all female) who also have CPH in our finnish FB group that we created a sub-group for them. Some may have even more than three headache disorders going on.

From what I have read it looks like very few are able to tell which disorders are happening simultaneously but I think pure CPH does not respond well to oxygen. I might be wrong though ! But I'm thinking if you get cluster-like pain in future while on indomethacin it might be CH partly responsive after all.

You're more than welcome - you're not going anywhere ;)

I'm happy you found clarity and wish you would not have to suffer at all.

  • Like 1

Share this post


Link to post
Share on other sites
13 hours ago, Tony Only said:

Why does your neuro think you can't have CH, CPH and migraine ?

Hi Tony,

That can indeed be a possibility. All these different headache types react on each other and I agree it is very difficult to differentiate. I heard of women who have CH and migraine, they sometimes can not tell the difference which one is active at which moment. And that is also my problem. 

Oxygen in my case works very well for migraine if I am early enough. And as a migraine attack is always a trigger for a round of PH attacks, so it also indirectly works as a preventive for PH. I can abort 80 % of my migraine attacks with oxygen. That is why my triptan usage is very low compared to the number of attacks I have per month. But once the PH started, you are right the oxygen is not working anymore. Simply because the attacks are too short. Most attacks are average 7-12 minutes. In a very rare case, it can last 20 min.  That is why oxygen is more or less useless as by the time you are on the oxygen and start breathing, 10 min have already passed and the attack stops by itself. But oxygen takes the sharp edges off the attacks and bring it down from 9 to 5-6. So it is a bit useful somehow. But during the attacks I am so busy trying to stand the pain that I am not able to focus on the oxygen. 

Indomethacin was not fully conclusive at 150 mg (some attacks still came through) but then they increased it to 225 mg. Then the response was absolute. There was not any symptom left of these attacks and all what was left was classic migraine that went easy away with a zomig pill. 

Now, 225 mg is a too high doses to take permanently (indocin is not the kind of med to take permanently anyway) and what I do now is if I feel it coming I start with 100 mg indocin and then 50 mg every 8 hours for around 3 days. Mostly these PH rounds take around 3 days with on average 20-30 attacks per day. So what I try is to cover this with indomethacin which is working well now. Indocin starts to work already in 1-2 hours and stop the attacks completely.

I asked about CH, if I can still have it but my neurologist told me that attacks that last on average 10 min with +20 per day in the active period and fully indocin responsive can not be labeled as CH. I agree with this.

But we will try to do some administrative trick to keep the compensation for my oxygen, which is exactly what you mention. Having 3 conditions so the CH diagnoses is still valid, and thus my right for oxygen compensation. Indocin by the way is also not that cheap. I pay every time 16 € for 60 pills. That is good for around 1,5 months.

Thanks and Best Regards !

siegfried

 

  • Like 2

Share this post


Link to post
Share on other sites

@Siegfried

im glad you finally found some answers. Must be a relief. I am frustrated because I tried indomethacin for a very short time. Not enough time to see any results. It made me so sick and dizzy. Any other neuro I’ve seen has dismissed my suggestion to try it again and play with the dosage a bit. I think I could see some positive results with it. My history; shaddow like pain all day every day since last July. Has been improving with 50 mg of metoprolol. Last 2 days I’ve been having orbital pain (not sure if it is stress related). Sometimes the pain turns into a severe throbbing on the other side of my head behind my eye. Still going strong with metoprolol. It’s not giving me any side effects so I might as well keep at it. I hope you have continued positive results. 

Kat 

  • Like 1

Share this post


Link to post
Share on other sites

@kat_92

Yes I know, indomethacin can be though and it is actually poison. Once I cut open a capsule to see what was inside and it was a kind of white powder but when I put a bit on my tongue, my tongue was burned and saw red ! So not very healthy stuff ...

I did the first indocin test 150 mg just before Christmas and I remember on Christmas eve, I was ill the entire day, pain everywhere, dizzy and vomiting the entire day. It was horrible but I did not want to give up as it is the only way to know what I have. 

So one week later, I tried it again and ... surprise.. no side effect what so ever. Only quite some pain in my stomach that last for 2 days but that went away. Now I can easily take 225 mg without any side effect ! So maybe you can insist to try it again. As happened with me, can be you react totally different on it when taking it a second time.

The biggest problem is hemicrania continua, because it can look like everything else. There is an extensive study on the internet about it and they say the exacerbations can look like CH, PH, migraine, tension headache and SUNCT. So for people who have a continuous background pain with attacks that change character all the time, it is good to try the indomethacin to see what it does.

I have also lots of background pain 24/7 with the short attacks superposed, so hemicrania continua was what we had in mind first but the indocin worked only on the short attacks but did nothing on the background pain. So that is why HC was ruled out and a PH diagnoses was made. The background pain is now believed to be part of the migraine spectrum or some kind of tension type related headache. Yes, an indocin cure can reveal/rule out quite some things.

I have been very good for the last 2 month with very few headaches. I am sure it is because of the COVID lockdown that I am able to work permanently at home and life is more quiet and regular in general. Apart from getting some food and basic necessities, I haven't left my home since 10 March. 18 May some limited mobility will be allowed again.

siegfried

  • Like 1

Share this post


Link to post
Share on other sites

@Siegfried 

so glad to hear. And it’s great you have an understanding neuro. I hope for continued success for you! 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×