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Dlions20

Does anyone else experience this?

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I’m new here and to cluster headaches so I’m still trying to learn. I’m noticing lately that during a bad attack, I get about 3 attacks per session. It gets really bad for about 20 minutes , dies down for a few minutes to almost nothing, picks back up intensely and then repeats 3 times. 
 

they almost feel like aftershocks to an earthquake. Is this something others experience? Or is it normally just one bad attack and it’s done for that attack. It seems like as the days go on they are getting worse in strength and length. 
 

Appreciate any experiences here. 

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Hi Dlions,

Welcome to this excellent forum !

I am having clusters  not exactly in your way but something more or less similar. First one starts, then have nothing  or some kind of migraine-like background pain from 5 min up to 1 hour and then the second attack starts. This process repeats itself non-stop for 2 up to 6 days. Then it stops and for me that is then that my cluster is over. I can then have one, two or 3 weeks break up to the next cluster. That is going on for the entire year except for an October-November break of 1,5 months. Very often these clusters will also trigger migraine attacks... so have to deal with 2 problems at once, which is a horrific experience.

From what I have already heard here and there, this pattern is not the normal pattern but definitely not uncommon. Every headache expert is familiar with this pattern. But your are right, most CH sufferers have like 2 to 5 attacks every day for the time their cluster takes which can be several months. I have 12 to 15 attacks/day for just a few days. I have seen someone on Youtube who explains her attacks also in this fashion.

There are many types of patterns that can occur and everybody is a bit different. You will learn that while reading trough posts in this forum.

That is what I can tell you about it

Best Regards !

siegfried

 

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In the way back machine, when I had no abortives, my pattern was:

8pm the first hit arrives. It lasts 2.25 hours - untreated.

10:30pm the next hit arrives. Repeat of 2.25 hours of misery.  15 minutes of pain free between the two

1am the third hit arrives. Repeat the same pattern for 2.25 hours

3:30 the fourth hit arrives and does the same as the previous three of the night

6 to 8am Sleep - in a recliner. 

So, that was my nightly schedule for 6 months if nothing else got into the mix. Then I was pain free till the next Equinox. This went on for years before I got help here. I cannot take triptans and the Verap had quit working at the low does I could tolerate. For the first few cycles, I was able to get an hour nap in the afternoon. Then, the dreaded 'No Naps' hit me. A nap would deliver a daytime hit!

The beast will morph over time. It just does.

Hang in there!!!

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Amazing how ch can differ. My attacks began with Kip zero (not having an attack) chronic this was every night/morning: 11pm sound asleep: 11:30pm Kip 9, 5 mins max till it hit Kip 10. 2:30am done Kip zero sleep for 30mins: 3am Kip 9, 5 mins max till it hit Kip 10. 5:30am done Kip zero sleep 30mins: 6am Kip 9, 5 mins max till it hit Kip 10. 6:15am (*in low cycle) done Kip zero time to start the day. *In high cycle the last began exactly the same but ended at 6:45am Kip zero time to start the day. The only daytime attacks I've had were during high cycle & always from no pain to 'Is this the one that will kill me?'. Glad I found clusterbusters is an understatement.***All of that was untreated***

Edited by Brain on fire

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Hi am new here but not new to cluster migraines. I have been dealing with cluster migraines since a teenager and I am now close to 50 yrs old. However, from the age of 19 yrs old to my mid 40's, I was in remission but when they returned, they returned with a VENGEANCE. When they first started happening again, I experience these migraines daily for 6 months straight with absolutely NO relief. I had several ER visits which included shots in my temples, finally I went to a neurologist that started me out on Nortriptyline that only worked for about a year. Now here I am several years and several medications later and I am now experiencing several clusters per day for a few days, a day or two relief; this cycle repeats. I must be honest, I rather be giving birth than to be dealing with these cluster migraines.

 

Can anyone else relate?

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Welcome Lady Graham, the term cluster migraines is often used by docs who know little about cluster headaches. Based on your user name I'm guessing you are female. Females with cluster headaches are often misdiagnosed with migraines. All thr more reason to avoid using the term 'cluster migraines'. 

Edited by Brain on fire
Keyboard again

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Hi Lady Graham!

I know what you are talking about. Mine began at 22 as chronic. Low level pain and lasted 20 minutes. I took Enderal (sp) and another drug for them. Doc's could not make a diagnosis. I would get hit about 8 times a day when in high cycle. Then a reprieve! 10 years pain free. During that time, the beast changed and grew. When it returned, it was M.A.D. I then began with the cycles I described above. Now I am over 70 and still have the lovely things. Glare.....

Please.look into the D3 Regimen. It is over the counter vitamins that you take daily. It is best to get a blood work up including your D3 levels. This can be a huge help in reducing the level of pain.

What are you taking now? Do you have O2 and a non-rebreather mask with a regulator that goes up to 15lpm? Or are they treating you for migraines not clusters?

ATB

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My clusters can sometimes come in waves, although I wouldn't say they die down to almost nothing, but might fluctuate between 3 and 9 on the KIP scale. But, other times it can just be raw, unrelenting pain.

Mox

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