Before I bust, is it even cluster?

[MagicAces]

So I’ve been dealing with…whatever I have…since I was 12. I’m 39 now. 
 

I’ve read through these forums before, as has my wife, who is now pushing for me to trying a dosing protocol. I’m writing this now at the start of an episode. 
 

the problem is, as I read everything about cluster experiences on here, I question whether it’s even what I have. I’ve been diagnosed with Clusters, but over the years that diagnosis has changed multiple times, with it most recently landing on Cluster again. What is challenging for me is that it feels like I haven’t seen another experience quite like mine on here. So, I write this hoping someone on here looks at it and goes “yup, your dr was 100%…that’s cluster” 

 

- from 1996-2020, I’d have maybe 1-2 episodes a year. Extreme pain, always in my left eye. Out of all the experiences I’ve had, only once has it ever been in my right eye. A constant stabbing pain, maybe every 30-60 seconds  

- pain typically worst at night, would last 1-2 days max, and typical experience landed me in the ER where I’d receive dilaudid, toradol and zophran. It would usually abort. Nothing else worked. Oxygen seemed to make things worse (or perhaps it was perceived as my anxiety with it not helping made it worse?)
 

-eventually, this cocktail slowly stopped working for an immediate abort, and the pain would return resulting in a subsequent trip to the ER. Usually still would only last about 1-3 days. 
 

-Feb 6, 2020, everything changed. I still don’t see any reason to believe I had contracted Covid, but suddenly my headaches were lasting 4-7 days. Constant pain, though not as intense as they’d been through my life. Began taking Celebrex. Similar in the fact that it attacked my left eye. I’d get maybe 4-5 days of relief and right back it came. 
 

-in working with multiple specialists, I was put on 300mg of Emgality. Took it for about 4 months with no real change to frequency or duration. Shortly after, I began a low dose of Lamotrigine.  We slowly saw some longer periods of relief between attacks. 
 

- after several trials, I eventually hit 200mg of Lamotrigine and had gone 8 months without anything. When I did get an attack, days 1-2 were minimal pain, but constant. Ibuprofen, Tylenol and Triptans were used. Days 3-5 became more difficult and sleeping through the night was nearly impossible. Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point. It would then wind down days 6-7. Total time, about 1 week. 
 

- I eventually sought to see if scaling back on Lamotrigine would allow me to escape some of the side effects (difficulty maintaining a healthy weight, brain fog, reaching for words and coming up empty, tripping over words). I reduced to 150 under the guidance of my doctor and immediate popped one. We worked back to 200mg, but I began hitting them almost once every 2-3 weeks. 
 

- I’m now on 250mg lamotrigine. I just made it 9 weeks and am starting an attack … day 2 and I know my nights are going to get difficult.
 

I know many here have far worse experiences than I do. I have no right to complain, yet I feel lost, frustrated and confused. My quality of life feels stripped for me and I feel that things have gotten worse as time has gone on. 
 

moreover, I don’t even know if it’s truly what I have…clusters. The way they gradually increase in intensity and remain completely constant throughout those days. Every 30-60 seconds a thud or a stab inside my eyeball. Constant, even pushing through various pain meds. Increasing every day to a crescendo, before finally tapering to freedom. The anxiety waiting for the next one. Will it be a week? Or a month? Or finally a year? 
 

i have no known triggers…even after all these years … except maybe stress. Possibly dehydration, though I do my best to stay on top of that. 
 

does this frequency, and change in duration/intensity over time feel like a typical cluster progression during a lifetime? I don’t want to be concerned about a misdiagnosis before I begin thinking about dosing. 
 

I assume if I do try dosing, that staying on daily Lamotrigine would be okay since it isn’t a blocker. 
 

im sad, lonely and confused. I’m sure it’s cluster, but I just feel like you all talk about your experience differently. I just need to know I’m not crazy.  Any kind acknowledgment one way or the other would go a long way … and I appreciate what you all are doing to try to improve the QoL for the others in this community. 

[BoscoPiko]

Gosh MagicAces, your post wrenched my heart for you. CH can be so different for everyone and is known to change over time in various ways. Your description of the attacks does indeed sound like CH to me and the fact that you have tried the indomethicine rules out the CH lookalike (HC).  My CH started out very predictable, 3 month's starting in August but the predictability has gotten up and walked out on me this last year to the point of getting terrible one day attacks with over a month in between the next, then at times a weeks worth of daily attacks that at times have lasted from 6 to even 8 hours each. The stabbing in your eye is a pretty common CH symptom, my attacks are similar with the exception of the fact that my stabs are in my rt temple. I do get really bad pressure in my rt eye but the stabs come in the temple. I have also had some good and some bad experience with 02, sometimes depending on the breathing technique I use, I am able to abort but the last time I used it, I felt like it escalated the attack to the every 30 to 40 second stabs but truthfully it was most likely an odd coincidence but I am still left with fear of trying again. I did not see mention of you trying the D3 reg? If you haven't, it really is worth a try. I'm sorry your going through this and hope it passes soon!

[Baby Moth]

Just wanted to say that my heart goes out to you. This is a long and sometimes lonely road. @BoscoPiko knows a lot! There is also a lot of resources on this site and in the community. I know it can be hard to read through sometimes, perhaps there is someone who can help you read and organize all the protocols and experiences.  That was really helpful for me b/c reading and being on the computer was really hard sometimes. I have found that meditation and learning to deescalate my fear cycle has been really helpful. There are some good resources / apps such as Balance (free for a year) and Curable (also has a lot of free resources). Those were, and continue to be helpful for me. 

[FunTimes]

19 hours ago, MagicAces said:

pain typically worst at night, would last 1-2 days max

Is this a constant pain with no pain free time at all?

19 hours ago, MagicAces said:

I was put on 300mg of Emgality. Took it for about 4 months with no real change to frequency or duration.

This has been reported by others as well 

19 hours ago, MagicAces said:

Oxygen seemed to make things worse (or perhaps it was perceived as my anxiety with it not helping made it worse?)

Were you using the proper non rebreather mask and flow rate up around 25lps?

19 hours ago, MagicAces said:

im sad, lonely and confused

Has happened to just about everyone on this site, We are all here to help you out at any time of day or night! Great place to vent.

 

19 hours ago, MagicAces said:

i have no known triggers…even after all these years … except maybe stress.

A good test that works for most of us is drink a beer- get a attack. When in cycle for episodic and any time for chronic. Some are lucky and can drink with no effect but it is still a good test. 

 

19 hours ago, MagicAces said:

I know many here have far worse experiences than I do. I have no right to complain, yet I feel lost, frustrated and confused. My quality of life feels stripped for me and I feel that things have gotten worse as time has gone on. 

I does not matter if you get one a month or 5 a day, it all sucks and everyone has the right to talk about it. Spill your guts here and we will help clean up the mess

[CHfather]

22 hours ago, MagicAces said:

Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point.

Great questions and comments from FunTimes.  It's not clear to me whether that rotation you described helped.  Can you tell which (if any) of them did make a difference?  I'm particularly wondering about the triptans: what form were they in (pill, spray, injection) and did they help?  Some of these things should have helped right away -- trudesha and triptans.  The rest had no likelihood of helping if it was CH.  I wouldn't be too quick to say that the Indomethacin eliminates hermicrania as a possibility: How much did you take, and for how long?

[BoscoPiko]

37 minutes ago, CHfather said:

I wouldn't be too quick to say that the Indomethacin eliminates hermicrania as a possibility: How much did you take, and for how long?

Good catch CHF!

[Mike OB]

On 4/9/2024 at 6:02 PM, MagicAces said:

So I’ve been dealing with…whatever I have…since I was 12. I’m 39 now. 
 

I’ve read through these forums before, as has my wife, who is now pushing for me to trying a dosing protocol. I’m writing this now at the start of an episode. 
 

the problem is, as I read everything about cluster experiences on here, I question whether it’s even what I have. I’ve been diagnosed with Clusters, but over the years that diagnosis has changed multiple times, with it most recently landing on Cluster again. What is challenging for me is that it feels like I haven’t seen another experience quite like mine on here. So, I write this hoping someone on here looks at it and goes “yup, your dr was 100%…that’s cluster” 

 

- from 1996-2020, I’d have maybe 1-2 episodes a year. Extreme pain, always in my left eye. Out of all the experiences I’ve had, only once has it ever been in my right eye. A constant stabbing pain, maybe every 30-60 seconds  

- pain typically worst at night, would last 1-2 days max, and typical experience landed me in the ER where I’d receive dilaudid, toradol and zophran. It would usually abort. Nothing else worked. Oxygen seemed to make things worse (or perhaps it was perceived as my anxiety with it not helping made it worse?)
 

-eventually, this cocktail slowly stopped working for an immediate abort, and the pain would return resulting in a subsequent trip to the ER. Usually still would only last about 1-3 days. 
 

-Feb 6, 2020, everything changed. I still don’t see any reason to believe I had contracted Covid, but suddenly my headaches were lasting 4-7 days. Constant pain, though not as intense as they’d been through my life. Began taking Celebrex. Similar in the fact that it attacked my left eye. I’d get maybe 4-5 days of relief and right back it came. 
 

-in working with multiple specialists, I was put on 300mg of Emgality. Took it for about 4 months with no real change to frequency or duration. Shortly after, I began a low dose of Lamotrigine.  We slowly saw some longer periods of relief between attacks. 
 

- after several trials, I eventually hit 200mg of Lamotrigine and had gone 8 months without anything. When I did get an attack, days 1-2 were minimal pain, but constant. Ibuprofen, Tylenol and Triptans were used. Days 3-5 became more difficult and sleeping through the night was nearly impossible. Ativan, ibprophen, tylenol, Celebrex, indomethicine, and Benadryl, triptans and trudehsa are all in the rotation at this point. It would then wind down days 6-7. Total time, about 1 week. 
 

- I eventually sought to see if scaling back on Lamotrigine would allow me to escape some of the side effects (difficulty maintaining a healthy weight, brain fog, reaching for words and coming up empty, tripping over words). I reduced to 150 under the guidance of my doctor and immediate popped one. We worked back to 200mg, but I began hitting them almost once every 2-3 weeks. 
 

- I’m now on 250mg lamotrigine. I just made it 9 weeks and am starting an attack … day 2 and I know my nights are going to get difficult.
 

I know many here have far worse experiences than I do. I have no right to complain, yet I feel lost, frustrated and confused. My quality of life feels stripped for me and I feel that things have gotten worse as time has gone on. 
 

moreover, I don’t even know if it’s truly what I have…clusters. The way they gradually increase in intensity and remain completely constant throughout those days. Every 30-60 seconds a thud or a stab inside my eyeball. Constant, even pushing through various pain meds. Increasing every day to a crescendo, before finally tapering to freedom. The anxiety waiting for the next one. Will it be a week? Or a month? Or finally a year? 
 

i have no known triggers…even after all these years … except maybe stress. Possibly dehydration, though I do my best to stay on top of that. 
 

does this frequency, and change in duration/intensity over time feel like a typical cluster progression during a lifetime? I don’t want to be concerned about a misdiagnosis before I begin thinking about dosing. 
 

I assume if I do try dosing, that staying on daily Lamotrigine would be okay since it isn’t a blocker. 
 

im sad, lonely and confused. I’m sure it’s cluster, but I just feel like you all talk about your experience differently. I just need to know I’m not crazy.  Any kind acknowledgment one way or the other would go a long way … and I appreciate what you all are doing to try to improve the QoL for the others in this community. 

 

[Mike OB]

Hello,

I have been dealing with Clusters for about 11 years now. The longest I have ever had one is 4 hours. Now I have had multiples in one day and my cycle that I am currently in started in November. Currently I take Verapamil, Depakote, Balcofen, Lithium, and Emgality. I use a Sumitriptan auto injector when I get a really bad one. The mild ones if caught quick enought will usually be taken care with oxygen. Are you seeing a board certified headache specialist? If not I highly recommend it.

[CHfather]

@Mike OB, that is some combination of unpleasant meds you're taking!  As a small suggestion, I would consider splitting your sumatriptan injections.  Most people can get good relief with a third or half of what's in that injector. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

As a larger thought, the vitamin D3 regimen has worked very well as a preventive for hundreds of people, and might allow you to get off a couple of your current meds.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

And then there's busting, which of course is the primary reason this site exists. You can read about that by clicking on "New Users -- Please Read Here First" at the top of any page.

Lithium usually is only prescribed to people with chronic CH, because the rebounds from stopping it can be severe (and of course many people have unpleasant side effects).

I would imagine that if those meds are working okay for you, you might be very reluctant to experiment with alternatives.  I'd only suggest that the absence of negative side effects from D3 and generally from busting would almost certainly be better for you in the long term.

 

[cryptoclusterhead]

Hello,   new poster here,  long-time CH sufferer;  13 years now  just wanted to drop my opinion 

 

Based on your description,  I think it is not cluster headaches ( again only in my opinion, not a doctor  )

 

The reasons why I don't think it is CH is because:

1)  Odd timing of first occurrence ( 12 as opposed to 20's+ )

2)  Length of attack period lasting only days and not weeks/months

3)  Possibly not responsive to oxygen 

4) No known triggers ( as another poster pointed out,  many have a strong reaction to alcohol )

5)  Traditional antiinflammatory and painkillers seem to have some effect at least for awhile ( many report they have no effect at all or extremely stunted effect )

 

Individually they would not rule out CH,  but taken together it doesnt seem like it is CH.       Im not a doctor but it seems from what you described more similar to a migraine type attack than clusters.