Jump to content

New to the group - Some questions


sam123
 Share

Recommended Posts

Hello!

New to the group and would definitely appreciate some insight. I've read quite a lot in here and elsewhere and I have a few questions I can't figure out. Also just nice to know that other folks can commiserate/understand. 

I've had cluster headaches since 2013 when I was 23. It was very clearly episodic for my first 5 episodes until 2020. It would come every 1.5 years or so and last a month ish. The first 2 times I found no relief at all and it was brutal, but then it stopped as quick as it started. The third time the doctor diagnosed me with CH and introduced me to verapamil and injectable triptans. Those both worked wonders and my cycle was stopped after a few weeks for episodes 3-5.

Episode number 6 was in January 2022 and was a little bit different. I didn't have so much success with the verapamil but the really painful attacks again only lasted about a month/6 weeks. In retrospect I think in this episode I only had access to prolonged release Verapamil, which I understand may be less effective. 

Now the weird part. Since that last episode in 2022 I've essentially had daily shadows (I referred to them as 'twinges' until I found this forum). I'd say less than 10 days in total where my head felt totally clear and normal since early 2022. Some days are better than others but essentially very few 100% clear days. Shadows come and go over the day. But on the flip side no full blown attacks either. This lasted for over 2 years which was both great (no real attacks) but also unsettling (daily shadows). 

Now, in late April a full episode again seemed to start and is still ongoing. I've been on Emgality since Fall 2023. I was trying to get the daily shadows under control at that time. When the full cycle started in April 2024 we then upped the Emgality dose to two shots (I’m in Asia so might be slightly different protocol). The cycle itself has been ongoing since then, now for about 6 weeks (second dose of two shots a month in). But the attacks have been milder than any previous attacks in the past (no red eye, only 1 or two where I ended up pacing, and only a few times I've needed to take a triptan, some days with just shadows). It's still pretty awful, but not as bad as any previous cycles.

So after all that, I have some questions:
- does anyone else have like episodic attacks but chronic shadows? If so, any specific tips for managing the ongoing shadows? I just started taking a ginger supplement a few days ago so we'll see if that helps. And did it ever go away for anyone? I used to have beautiful 1.5 years between episodes but now its a lingering thing every day. My current neurologist has been saying I'm now chronic but I'm not sure that seems correct seeing as I didn't have any actual attacks for over 2 years until this current cycle, just the daily shadows.
- has anyone had a similar experience with Emgality where it seems like its helping quite a lot but in some subtle ways (lower frequency of attacks, lower intensity, no red eye)? My neurologist here insists that Emgality is the way to go, although I did have more success with Verapamil in episodes 3-5. (Less so in 6). Although i don't think it did anything for the daily shadows in the fall. 
- during this recent episode since April I feel like my left Eustachian tube is quite blocked/crackly, which has never been a symptom before. It crackles and pops a bit when I open my mouth at all times, but then during an attack it is much more noticeable. Does anyone else experience this?
- I have one hope/theory for the daily shadows. I am now in Hong Kong where the weather is generally humid for most of the year. The daily shadows started about 3 months after I arrived here. I will leave in summer 2025 so maybe it will improve in my next location. Anyone experience similar and anyone find it gets better after a move?? I didn't think my previous cycles were weather related as they would happen at 18-20 ish month intervals, so at different times of year.  They are also always inconsistent at what time of day they occur, and almost never at night, which I know is an oddity.

 I haven’t done the high dose D3 or busting but am considering all the options at this time. I had little success with oxygen last time but I expect my set up wasn’t correct, and this time the attacks have been mild enough to bear without. I'm hoping the current cycle ends soon and ideally the shadows with it. 


Looking forward to hearing from any of you/also just really nice to get some of these thoughts/mysteries off my chest and on to the page.

Cheers

  • Like 1
Link to comment
Share on other sites

7 hours ago, sam123 said:

does anyone else have like episodic attacks but chronic shadows?

Hi Sam and welcome.. To answer your above question-Yep... Good that you found the ginger. I use a mixture of turmeric, ginger and turmerones which helps a good deal.

 

7 hours ago, sam123 said:

And did it ever go away for anyone?

It goes away sometimes and comes back sometimes<_<

 

7 hours ago, sam123 said:

has anyone had a similar experience with Emgality where it seems like its helping quite a lot but in some subtle ways

I have never used it but have read a few similar things. Unfortunately most of what I have read has been on the not so helpful side. 

 

7 hours ago, sam123 said:

during this recent episode since April I feel like my left Eustachian tube is quite blocked/crackly,

Maybe get an appointment with a ENT Doc. could be sinus related

 

7 hours ago, sam123 said:

haven’t done the high dose D3 or busting but am considering all the options at this time. I had little success with oxygen last time but I expect my set up wasn’t correct, and this time the attacks have been mild enough to bear without. I'm hoping the current cycle ends soon and ideally the shadows with it. 

I would start with the D3 ASAP! It has helped so many of us! 

  • Like 2
Link to comment
Share on other sites

  • 2 weeks later...
On 6/7/2024 at 4:23 AM, BoscoPiko said:

Hi Sam and welcome.. To answer your above question-Yep... Good that you found the ginger. I use a mixture of turmeric, ginger and turmerones which helps a good deal.

Thank you Bosco for the response. Really appreciated! Nice to also have some solidarity - this thing can be so isolating.

 

On 6/7/2024 at 4:23 AM, BoscoPiko said:

I have never used it but have read a few similar things. Unfortunately most of what I have read has been on the not so helpful side. 

I'm not sure how successful the Emgality has been, but interestingly the neurologist has suggested trying taking it as an IV infusion, so I might do that in the next while if the cycle hasn't ended. Apparently it's not that common of an approach yet so if I go that route and if I have any success I'll let people know. I'm not sure if that's an available option everywhere though or just in Hong Kong. Jury is still out if the cycle has ended and I'm back to just the daily shadows or if the Emgality IS doing it's job and once it wears off the cycle will be prove to be still ongoing. TBD. 

On 6/7/2024 at 4:23 AM, BoscoPiko said:

Maybe get an appointment with a ENT Doc. could be sinus related

Interestingly, I've been seeing an ENT regularly recently as i've done a few surgeries in the last while for sleep apnea. We were incidentally hoping that addressing the sleep problems might help with the headaches but so far doesn't seem to be the case. I saw the ENT a few weeks ago and he wasn't sure about the crackly ears but I'm going to ask again at my next appointment because it was just in passing before. 

 

Thanks again :)

  • Like 1
Link to comment
Share on other sites

8 hours ago, sam123 said:

I'm not sure how successful the Emgality has been, but interestingly the neurologist has suggested trying taking it as an IV infusion

...that struck me as good thought...why not? haven't heard of for Emgality before but seems might provide enough extra blood serum level to work. will never forget the first methylprednisolone IV that stopped a cycle mid cycle for me. seemed miraculous! alas, never worked again...

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...