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30-something female w CH since teens, first post (Read 779 times)
ErikaLane
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30-something female w CH since teens, first post
Jun 13th, 2021 at 2:32pm
 
Hi all,

Though I've read a lot on spaces like this in the last 10 years since being diagnosed, this is the first time reaching out myself.  Usually 1.5 years between episodes, and in a particularly bad spell this time, I think its week 6 or going on 7 maybe, with 2 headaches per day as oppose to my usual 1 in the middle of the night.  The added one midday has really been pushing me over the edge lately, along with the extended time this spell has been(usually 4 weeks or so).  I take zomig or zolmitriptan dissolving tablets, tablets during day when can feel it coming, spray when I wake up near full headache.   In this episode I've taken 3 rounds of Dexomethasone, which did help for a day or two each time, but years ago one round of that would end a spell. 

I cry while reading everyone's stories, I could've written half of them myself.  Crying silently in the middle of the night, craving the cool air, prying at my neck and pressing on my face til its numb, the fire behind my right eye, the showers, the massager on my back.  I dam near crashed my car yesterday driving home from the grocery store, headache hit while in the aisles, took my spray up my nose at the til, cried, squinting while driving home repeating, please. stop. got home, jumped in the shower and in true form, it was gone 2 min after that.  Sorry for the rant.  Hope my story help others like theirs have helped me.
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Peter510
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Re: 30-something female w CH since teens, first post
Reply #1 - Jun 13th, 2021 at 6:16pm
 
Welcome Erika,

You mention lots of abortive meds, but what preventative treatment are you using?

Let us know.

Peter.
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ErikaLane
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Re: 30-something female w CH since teens, first post
Reply #2 - Jun 13th, 2021 at 8:15pm
 
Hi Peter, thank you!
I was first prescribed Verapamil but they just gave me a regular headache all day, and since my cycle is about 1.5-2 years, I didn't want to have to take it all the time.  I have also taken Prednisone but cannot recall what happened w/ that. So I guess nothing really.  I literally just took 2.5 mg Zolmitriptan dissolving tablet as my midday one is coming right now.
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AussieBrian
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Re: 30-something female w CH since teens, first post
Reply #3 - Jun 13th, 2021 at 9:57pm
 
G'day,  Erika,  and Peter's right about preventatives,  as he's right about most things,  so you might also like to look into the Vitamin D regimen which was developed right here among ClusterHeads and is showing great results for many, many people.

There's also a button on the left side of your screen marked  "Oxygen Info"  and as abortives go it's the first one to which many CHeads turn.  Can be a bit of a headache getting it set up to start with but a lot of people swear by it.

I noticed your comment about showers and it's often been discussed here as while most have their shower freezing cold there's others who have it scalding hot.  Personally I just stand there switching between the two but it shows that while we also suffer the same dread disease there's none of us really the same when it comes to successful remedies.

One day there'll be a cure but in the meantime we just battle on as best we can,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Peter510
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Re: 30-something female w CH since teens, first post
Reply #4 - Jun 14th, 2021 at 11:57am
 
Erika,

Oxygen at a flow rate of 15LPM is the standard abortive for Cluster Headaches and I would advise that you discuss this with your Doctor as soon as possible.

Brian is absolutely correct about the D3 Regimen. You can read up on it in the Medications and treatments section here. It is also referred to as the Anti-inflammatory Regimen.

I am a Chronic Cluster Head, so I get hits every day, all year round, and I am not exaggerating when I say that the D3 Regimen saved my life, few years ago.

I suggest you read up here as much as you can, and come back with lots of questions.

Good luck,

Peter.
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ErikaLane
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Re: 30-something female w CH since teens, first post
Reply #5 - Jun 16th, 2021 at 10:46am
 
Thank you so much Brian and Peter!

I am so happy I made this post and found this website.  I'm sure all of you understand the inability to talk freely about what we experience, without being judged or doubted.  I am back on Verapamil from my GP, who has referred me to a new Neurologist since I moved out of province.

This cluster has been unique in many ways, its been longer, I am getting more than one, sometimes more than 2 per day, the other night, I got my night one earlier than usual, went to bed, and was up 3 more times that night, couldn't take my meds as was at my daily limit, but the those after ones went away pretty quickly. 

I could tell my GP finally did some research into CH by the questions he asked.  He was empathetic and more urgent in his suggestions.  I did appreciate that.  He talked about Oxygen, and said it is hard to get but he will try(!!). 

The Oxygen thing explains why I crave, I mean NEEED nice cool air during a hit, if winter, im outside, if summer, my face is in a fan or an ac, slowly breathing in and out.

I feel a connection to everyone of you and I pray for relief for all of us.
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Traveller
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Re: 30-something female w CH since teens, first post
Reply #6 - Jun 16th, 2021 at 6:47pm
 
Erika - another possible issue to discuss with your doc is sleep apnea.  There is growing evidence that depressed Oxygen levels resulting from Sleep Apnea can trigger nighttime attacks.  And medications like Verapamil can lead to more deep sleep and hence more attacks.  May not be relevant in your case, but since I was put on a CPAP machine 6 years ago my CH have disappeared completely.  Good luck.  There are lots of smart and experienced people here who can help!
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AussieBrian
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Re: 30-something female w CH since teens, first post
Reply #7 - Jun 16th, 2021 at 9:07pm
 
Also,  as you've a neuro visit coming up,  you might consider starting a headache diary as the information you start building up can be invaluable.

What time each headache started, length, severity  (we have a Kip Scale worth looking at).  What you were doing at the time,  what you'd been eating/drinking etc.

It's a delight what sort of thing can come out of it such as possible triggers you hadn't noticed and it makes the neuro's job so much easier.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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ErikaLane
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Re: 30-something female w CH since teens, first post
Reply #8 - Jun 17th, 2021 at 1:25am
 
Thank you both!

After reading on here the last few days, I regret not tracking not only individual headaches, but the clusters, etc. I shall start now.
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AussieBrian
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Re: 30-something female w CH since teens, first post
Reply #9 - Jun 17th, 2021 at 1:56am
 
ErikaLane wrote on Jun 17th, 2021 at 1:25am:
...tracking not only individual headaches, but the clusters, etc.

The time of year might be relevant as many CHeads are triggered by various pollens while changing weather can blow others out of the water,  especially approaching storms.

Some crack up as the air pressure drops while others,  like myself,  have problems with increasing pressure and even coming down a mountain can pose a problem.  (Oddly,  I was never bothered while skydiving.)

If nothing else,  you're diary allows you to take control instead of being controlled by a beast.  This is important.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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ErikaLane
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Re: 30-something female w CH since teens, first post
Reply #10 - Jul 27th, 2021 at 7:22pm
 
Thank you again to those who posted.

Update here, my cluster ended about a week into July. Absolute worst, longest, with more frequent headaches as well. Was upped on Verapamil to 480 mg/day. Went for an ECG haven't heard back so assuming all was fine there, my doc did sched an MRI for early next year too.

Really Really happy I found this website.  Expecting to be back around dec/2022(   Shocked  ) 

My thoughts are with everyone on here. Even when ppl might not reply, we REALLY appreciate the replies and insights.

Take care all.
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Peter510
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Re: 30-something female w CH since teens, first post
Reply #11 - Jul 28th, 2021 at 8:57am
 
Erika,

Glad to hear you’re through it and things are better.

Now would be a good time to start the Vitamin D Regimen. You never know, the last episode could be the LAST episode.

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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