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tonanty

Am i the only person that usually gets one headache a day during cycles?

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Hello guys,

does anyone also get the headaches only once a day usually? when im in cycle i usually just get it once a day in the morning around 6:00 am 

maybe its not CH after all...

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during a cycle do you know if its common for the time to shift for example the first week i may get them at 6:30 am and then the next week it moves up to 8:00 am everyday ..

 

also thank you for being so responsive on this blog 

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For some Cher's, the time can change like that, yes.

How long have you had Clusters? Any Scans done when you were diagnosed? I see from other posts that you are young, so perhaps you have not had many cycles? 

CH can and likely will morph as you go through the years. So, it sucks, but is easier to accept that it will likely change on its' own. 

 

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My current cycle is one hit per day... usually in the afternoon. Sometimes 2...

if I take a nap after the first one goes away I’ll wake up with another one just as bad or worse.

Also I usually have shadows all day before and/or after.. sometimes a migraine all day.. during a cycle my head feels cloudy all the time.

In my opinion clusters are night and day between anything else.. and I can easily tell when I’m having one... my right eye kills, gets puffy and nose gets runny..

the time for me seems to switch . I would say yes the times do change.

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Yes but CH runs the gamut. You’re not alone but rare. There are some that cycle 2 times a year , every other, every 3 rd year... we all have a different number of attacks....

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On 8/1/2019 at 2:05 AM, spiny said:

For some Cher's, the time can change like that, yes.

How long have you had Clusters? Any Scans done when you were diagnosed? I see from other posts that you are young, so perhaps you have not had many cycles? 

CH can and likely will morph as you go through the years. So, it sucks, but is easier to accept that it will likely change on its' own. 

 

i am 23 now..... i do have childhood memory of being maybe 5 or 4 and experiencing one sided pain one morning.... it never came back until i was 15 and i had the same one sided pain every morning for about a week.. then it was totally gone until my last year in high school (4 years after the last) it was terrible lasted 2 months i thought it was permanent and that i would have to live my life like this....ever since ive been getting them every 2.5 years they lats between 2-4 weeks... although i do recretionaly experiment with pschadelics alot so that may be the reason why my cycles are so far apart and usually bearable.  do u know if CH gets worst with age:( ?

i live on a small Mediterranean island so i dont really trust drs with such rare condition so i will be going to another doctor in america on august 15th! and will get scans also...

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Terrific about getting the scans work done. it is to rule out other medical issues.

CH often will become more intense over time. Then, for some, it backslides into a moderated hit that is easier and lower on the pain scale. Aging out has been stated for decades. I wonder if they just gave up or it reduced in intensity and they dropped the meds and just carried on alone? 

Your cycle may become yearly or they may become longer, but on a tri-annual schedule. You may get a ten year reprieve! There is no telling for certain. Everyone is different and yet the same. I would not worry about it, just stay prepared. You will manage it.

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If you don’t mind us asking who are you going to see in the states, there are plenty of good CH Docs here and a lot that are a waste of time....

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When my clusters first started, I would normally get them on a Tuesday evening between 7pm and 7:30pm. Sometimes at 7pm, then another at 7:30pm. Once 7:40pm rolled around, I could actually feel myself relax as I knew I wasn't going to get one that night.

I'd also get hit sometimes on a Wednesday or Thursday evening too, and the weekends of course. But Tuesday was like clockwork.

It's actually a defining factor of clusters. They are linked with your hypothalamus, which controls your body clock. 

Mox

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My CH was only during the day for the first 15 years then I got the nightmare on Elm street condition. The last big cycle before I got into MM I was waking up every hour six times a night.

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On 8/2/2019 at 4:06 PM, Freud said:

If you don’t mind us asking who are you going to see in the states, there are plenty of good CH Docs here and a lot that are a waste of time....

Its called diamond head clinic in chicago

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Diamond is fine.  My only big question about making such a journey would be whether If they give you prescriptions (for oxygen and medications), you will be able to get them filled where you live. Maybe you're coming to the US for other reasons besides going to this clinic.  

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On 8/7/2019 at 9:24 AM, CHfather said:

Diamond is fine.  My only big question about making such a journey would be whether If they give you prescriptions (for oxygen and medications), you will be able to get them filled where you live. Maybe you're coming to the US for other reasons besides going to this clinic.  

yes i study in Chicago so i live here... Just had my appointment with dr diamond and diamond clinic after a fe months of waiting. Apparently Emgality is a very effective treatment for stopping cycles for both episodic and chronic.Its a new drug so not many people know about it. Hopefully they dont come back but if they do ill see if it actually works

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How long did you wait for your appointment with Dr Diamond? What tests/scans did he require? Have you actually had the emgality injection? I recently read on the site it had been FDA approved. When i contacted the company, i was advised it is approved in Canada as well but there are supply chain issues and to keep checking in so it is not yet available where i am.  Does anyone know if a GP can prescribe and give the emgality injection?    I have been considering traveling to the Mayo clinic in MN but am concerned their neurologists will require MRI, CT or other scans and tests before they would give me an injection which will significantly raise the costs without knowing if this will actually be effective for me....  Thanks to all!  

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I have taken Emgality for 2 months, I just started the 2nd. That's 3 shots the first, and 3 shots the second. My headaches reduced (after a one day spike) from about 5 a day to 2 a day, and now I'm pain free for almost 3 weeks.

As I said in a previous post, there could be some change of season at play here as well, but the reduction in hits was definitely noticeable 24 hours after the first injections.

 

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On 9/20/2019 at 12:41 PM, Transcona gal said:

How long did you wait for your appointment with Dr Diamond? What tests/scans did he require? Have you actually had the emgality injection? I recently read on the site it had been FDA approved. When i contacted the company, i was advised it is approved in Canada as well but there are supply chain issues and to keep checking in so it is not yet available where i am.  Does anyone know if a GP can prescribe and give the emgality injection?    I have been considering traveling to the Mayo clinic in MN but am concerned their neurologists will require MRI, CT or other scans and tests before they would give me an injection which will significantly raise the costs without knowing if this will actually be effective for me....  Thanks to all!  

The wait is usually about a month but i constantly had to push it back because i travel between Europe and America constantly so it took me 3 months.

I'm off cycle so i did not have the injection i was told to keep them in my fridge and take it as soon as i feel a shadow 

she only requested an MRI. i recommend her i feel like she has a lot of experience w ch especially from her using terms like shadows and stuff that we use here. Both my uncle and aunt are doctors with 20+ years experience and they cant distinguish a migraine from a CH because they are simply just not aware of the condition.i lived 5 years thinking i would have periods of migraines that would suddenly disappear now it all makes sense to me it was cH all along..so seeing a specialist is important!

 

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On 8/5/2019 at 1:35 PM, xBoss said:

My CH was only during the day for the first 15 years then I got the nightmare on Elm street condition. The last big cycle before I got into MM I was waking up every hour six times a night.

six times a night ? that sounds absolutely AWFULL that what i imagine hell looks like. whats ur CHs now with MM?

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3 hours ago, xBoss said:

I ended a 60-80 day cycle on day 6 last year and this year I had no CH! I have a full bust report coming soon.

i cant wait to read this bust report!! please provide details like what kind of MM and doses too (if you remember)

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Hi Tonanty,  I have been a clusterhead about 45 years.  Once a day for around 6 weeks.  7:30 pm to be exact.  From the posts I read we are the lucky ones.  I have been pain free for about 3 years now but started the beast again last week. (right after a flu shot).  The D3 regimine works very well for me. 

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