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Fidelity

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Another year, Another cycle?
Aug 6^th, 2015 at 4:59am

So its been a while since Ive been on this board, but Im back upon my dads recommendation.

I first started getting cluster headaches back in 2012 when I was 18, and every year since they have returned around August. Now its August and Im getting anxious, and worried, and scared, and Im just a bit of a mess. Ive tried most of (all?) the first line medications, and they have either been ineffective or I've had nasty responses to them (low BP on Verapamil, severe mood changes on Topamax).

Im just feeling a bit hopeless about the situation. I have a lot of other things going on in my life at the moment, so its likely that Im being overly pessimistic, but I just feel like I can't deal with this again. I don't want to take medications anymore, I don't want the side effects but I also don't want pain. I don't know what to do.

How do you deal with knowing that you are about to be struck down with pain over and over again, night after night. And knowing that you probably aren't going to be sleeping a full night for the next couple of months. Ive never felt this negatively about it and I always thought I could deal with it but not this time. Does it get easier to deal with over time?

Ive got my oxygen and prednisolone ready for when I need it, but am yet to find a preventative that works for me.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Another year, Another cycle? Reply #1 - Aug 6^th, 2015 at 5:45am Hi, Welcome. Have you tried the D3 regimen. If not , read up on it here under " 123 days pain free", the ask loads of questions. It's been a life changer for many of us. Best of luck. Peter.
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AussieBrian

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Re: Another year, Another cycle?
Reply #2 - Aug 6^th, 2015 at 6:05am

G'day, welcome, and I promise we know exactly how you feel just now. All of us here are ClusterHeads, or Supporters, and we understand completely.

You have no need to explain.

It's terrific you already have Oxygen but how do you have it set up? Certainly it's not a preventive but used to maximum effect it can help out big time when the true fight begins. Tell us about your system and perhaps we can suggest improvements.

Also there's energy drinks like Red Bull chugged down straight away and it's helping a few folks.

Then there's the D3 attack system as mentioned by our good friend Peter which is giving great preventive results to many.

You're amongst friends here, mate. We care.

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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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helliknowpain

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Re: Another year, Another cycle?
Reply #3 - Aug 6^th, 2015 at 8:17am

Man we share so much in common. I, like you am a aug - November guy, I started at your age.
Let me say to you it does get easier as you get older. You learn to live in the moment. You learn not to anticipate and fret about your upcoming cycle, but instead enjoy every pain free day.
Young age is tuff on us, I know. Friends don't understand why you don't want to go for a couple beers or camping or a football game etc. People think your exaggerating or looking for attention. Don't blame them, they have no idea!
If we are truly alike you can expect to go pain free for years. When/if it comes back you just feel better equipped to deal with it.
You also enjoy the fact that you are young and in your life time they will find a cure.
We're different, we're tougher.
You're dad is right about this site, read, read and read some more. Try the D3 and other defences, but give them a chance to help, don't give up on them prematurely, cus you don't want to overlook the fix by not giving it a chance to work.
Stay tough, be a warrior

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BarbaraD

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Hugs to ya

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Re: Another year, Another cycle?
Reply #4 - Aug 6^th, 2015 at 9:44am

D3... it's been a lifesaver for so many of us... I've been chronic since 97 and since going on it I've been pain free almost two years now...

If you don't understand the regimen (and you have to do it right for it to work) pm Batch and he'll get you going in the right direction.

But it's worked for so many of us.. it's definitely worth a try.

Hope you skip this cycle.. Kiss

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What don't kill ya, Makes ya stronger!

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Fidelity

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Re: Another year, Another cycle?
Reply #5 - Oct 14^th, 2015 at 1:53am

Not long after I posted this I did start another cycle, and its been difficult few months. I have seen my neurologist a few times, and I feel like he doesn't really know what to do at this point either.

We're back to trying verapamil, but the short release formulation, and Im tolerating it slightly better than the extended release, but on a fairly low dose my blood pressure is too low at times, and I feel like Im going to pass out. While this isn't ideal, I feel like the verapamil is my best option at the moment.

What are some of the more successful preventatives? So far we've tried verapamil, lithium, topamax and propranolol.

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Hoppy

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Re: Another year, Another cycle?
Reply #6 - Oct 14^th, 2015 at 4:12am

Hi Fidelity,
Sorry to read your still doing battle with the beast, but I agree with Peter, Aussie Brian, Helliknowpain, and Barbara. The vitamin D regime has lots of us here CH free, including myself, you can find the link under Medications, Treatments, Therapies. 123 Days PF And I Think I know Why, Batch.

Cheers Hoppy

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« Last Edit: Oct 14^th, 2015 at 4:14am by Hoppy »

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Kiki

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Re: Another year, Another cycle?
Reply #7 - Oct 15^th, 2015 at 9:25am

Do anyone felt an unusual tightness or heart palpitations occasionally from taking vitamin D3? Undecided

I take 10.000 i.e. along with the magnesium. My latest blood tests were on 4. September and it was 41.7 ug / L. But this is not enough ...
The new thing that I have read and still trying is nettle tea. I read that we should drink 3 liters a day, at least 8 days in order to have an impact. So today is my third day and we'll see what happens. However, I note that my attacks are lighter.
Really scares me... pressing/tingling around the heart? Could it be from vitamin D3? Anyone know? I am 30 years old and I have a cluster for 15 years.

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Bob Johnson

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Re: Another year, Another cycle?
Reply #8 - Oct 15^th, 2015 at 10:01am

Are you working with a headache specialist or a doc will real experience/skill? Crucial....
---
Ask you doc for a sample of this one: became my only med after I experienced its consistent, quick action. And it's inexpensive on a per dose basis.
====
Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====

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Bob Johnson

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Another year, Another cycle?
Reply #9 - Oct 15^th, 2015 at 2:06pm

Hi Kiki and welcome

Kiki wrote on Oct 15^th, 2015 at 9:25am:

Do anyone felt an unusual tightness or heart palpitations occasionally from taking vitamin D3? Undecided

...
Really scares me... pressing/tingling around the heart? Could it be from vitamin D3? Anyone know? I am 30 years old and I have a cluster for 15 years.

For anything like this I'd consult your doctor. Whilst this may be connected with what you are taking for CH, it might not, so do get it checked out.

I've not heard of using nettle tea before, although Google finds a few places where it is suggested as providing relief for CH (plus multiple other conditions).

I did find one website where it warns of a potential risk of using it along with anti-inflamatories (the D3 approach is anti-inflamatory) - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

.

Quote:

For theoretical reasons, there are some concerns that nettle may interact with diabetes, blood pressure, anti-inflammatory, and sedative medications, although there are no reports of any problems occurring.

This might be a possible explanation of the issues you are seeing, but do see your doctor and explain what is happening and what you are currently taking.

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Kiki

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Re: Another year, Another cycle?
Reply #10 - Oct 16^th, 2015 at 7:53am

Yes I am working with neurologist. But I'm from Slovenia, and here we have a completely different regulation of health. First you need to visit your personal doctor (such here have no idea what is CH) then he writes a referral to neurologist. Time duration to get to a neurologist is about six months, when i don't have cluster anymore.
I am currently taking Imigran 50 mg, I think it's the same as Imitrex that you are using in your country (sumatriptan).
Mike NZ thank you so much for sending me all that documents and for quick response! I appreciate that. I'll go check my vitamin D, calcium and magnesium again and then decide or I will quit drinking nettle tea and start taking vitamin D.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Another year, Another cycle?
Reply #11 - Oct 16^th, 2015 at 1:40pm

It isn't uncommon for people to face a delay of months before they can see a neurologist. What I'd do is to find out which neurologists have experience of dealing with CH and get the referral to see them as far too many neurologists have limited experience of dealing with CH.

It is also worth inquiring about cancelled appointments, so if one comes up you can get that one instead of waiting the full six months.

Imigran amd Imitrex are trade names for sumatriptan. So they all have the same active ingredient. However the 50mg dose means that you're using the tablet form, which can take 20+ minutes to kill off a CH, which is a long time. The injection and nasal spray versions work a lot faster, typically in around 5 minutes, so these should work better for you if they are available.

Do also look at using oxygen to abort CHs. Read up about how we use it at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

.

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MDR

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Re: Another year, Another cycle?
Reply #12 - Oct 28^th, 2015 at 11:36am

I found this and copied and pasted it for you.

Tell your doctor if you experience any of the following after taking Imigran tablets:
pain, tingling, heat or flushing in any part of the body.
feeling of sleepiness, dizziness or tiredness.
nausea (feeling sick) or vomiting.
a change in blood pressure.
feeling of faintness.
problems with your eyesight.

Mark.

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