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Hello from Key Largo. (Read 6045 times)

nebusoi

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Hello from Key Largo.
May 6^th, 2016 at 10:07am

Not a CH newbie, but new to this forum. Sometimes I just want someone to understand what I go through and I think this is really the best place to start.

I've had clusters for 13 years, being misdiagnosed with migraines and trying many different medications for about 3-4 years. Once I learned I do not have migraines I stopped all medication.

My main trigger is alcohol, but this cluster period it has been sleep more than alcohol triggering them. I only drink on the weekends. I do not use any treatments other than breathing techniques to endure it, though after reading today I will try some out. As I am aware that smoking is thought to make them worse, I find that it helps relieve mine most of the time. I also sit outside in the warm, humid air, rather than inside as the cold a/c seems to hurt when I breath it in. If it gets to what I call "full force", I have no other choice but to sit inside, indian style, on the spare bedroom bed. It's like my SPOT. I need the dim light, quiet, and alone time to get through it.

I am curious though, if anyone might get something like a song lyric or line stuck in their head that keeps repeating to an obnoxious level when they have one hit? This happens to me more often than not, and the only thing that stops it is if I am saying, "please go away", or if the CH subsides.

Anyway, nice to know I now have somewhere to turn to if I need advice or just someone to talk to about this.

Also, my sister has them too, but not to the same degree. I am also a female.

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Potter Ex Member	Re: Hello from Key Largo. Reply #1 - May 6^th, 2016 at 10:22am Have you seen a neurologist and gotten diagnosed? Potter
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nebusoi CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello from Key Largo. Reply #2 - May 6^th, 2016 at 10:35am Haven't been sent to a neurologist, but have been diagnosed by my primary doctor at the time.
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Potter Ex Member	Re: Hello from Key Largo. Reply #3 - May 6^th, 2016 at 10:55am You need to see a headache specialist. Potter
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nebusoi CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello from Key Largo. Reply #4 - May 6^th, 2016 at 11:04am Ok... May I ask why? A medical professional diagnosed me with them and didn't find it necessary to send me to a neurologist or specialist, so I am somewhat confused as to why it needs to be a headache specialist? I know I have the CH's, it's been 13 years. Am I not welcomed here without seeing a headache specialist?
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Potter

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Re: Hello from Key Largo.
Reply #5 - May 6^th, 2016 at 11:16am

nebusoi wrote on May 6^th, 2016 at 11:04am:

Ok... May I ask why? A medical professional diagnosed me with them and didn't find it necessary to send me to a neurologist or specialist, so I am somewhat confused as to why it needs to be a headache specialist? I know I have the CH's, it's been 13 years. Am I not welcomed here without seeing a headache specialist? Undecided

Would you see a gp for heart problems or a gp for cancer? You need to rule out other problems with your brain that mimic clusters.

Potter

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nebusoi CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello from Key Largo. Reply #6 - May 6^th, 2016 at 11:25am I figured my doctor would have sent me to one if he found it necessary so I never did. I will find somewhere else where I am welcomed until I see a specialist. Slightly disappointing, I was only seeking support. Thanks, I guess.
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Potter

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Re: Hello from Key Largo.
Reply #7 - May 6^th, 2016 at 11:33am

nebusoi wrote on May 6^th, 2016 at 11:25am:

I figured my doctor would have sent me to one if he found it necessary so I never did. I will find somewhere else where I am welcomed until I see a specialist. Slightly disappointing, I was only seeking support.

Thanks, I guess.

Someone will be along shortly that will support you , in the meantime take the quiz.

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Potter

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nebusoi

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Re: Hello from Key Largo.
Reply #8 - May 6^th, 2016 at 12:07pm

I already have. I had one yes on the 1-8 which was #4 and one no on the 9-16 which was #16 because while I may walk or pace, I do not bash my head or thrash about and scream.

I understand you are probably skeptical of people who have not been officially diagnosed by a neurologist, and I do understand the point you are making about seeing a specialist. But perhaps be a little more gentle with people who are only looking for some help. You honestly made me feel really sad and hurt, feeling like I need to prove my case to yet another person who doesn't believe or understand what I am going through. When the whole reason I joined was to discuss it without needing to do that.

I will take your advice however, and be officially diagnosed. I wasn't worried about it for years until the pattern changed last year and again this year.

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Peter510

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don't give in.

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Re: Hello from Key Largo.
Reply #9 - May 6^th, 2016 at 12:58pm

Nebusoi,

Welcome to CH.com. We are glad you found us.

Potter is correct in advising that you see a headache specialist as soon as you can. The reason for his insistence comes from bitter experience.

It is not uncommon for CH sufferers to go undiagnosed for years, with consequential incorrect treatment, because most General Medical Practitioners are not trained to differentiate between the different types of primary headaches.

Therefore it is the first piece of advice any one of us would give you.

Yes.... Potter has his own unique style that is often taken the wrong way, but I can assure you that he only means the best for anyone who comes here with headache concerns.

All headaches are horrible and we are here to help and support anyone who asks for it. There are CH sufferers from all over the globe here, with a wealth of experience to share, at any time of the day or night.

So, post here anytime. It is quite possible that your Primary Care Physician has the diagnosis correct ( mine did) but it is important that this is confirmed by a Neurologist who specialises in Primary Headaches, before any treatment is embarked upon.

Mind yourself and keep us posted.

Peter.

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

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thierry

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Re: Hello from Key Largo.
Reply #10 - May 6^th, 2016 at 1:17pm

Nebusoi,
OF COURSE YOU ARE WELCOME HERE,
and thank you for sharing your story.
We understand what you are going through and the pain you are suffering.
This is the best place to be to get info to treat/ relieve cluster headaches.
Ask all the questions you want and we'll be happy to help/support/listen.
I remember going to my doctor with the headaches for a few years before i self diagnosed with the help of this website/forum. I then told my doctor that i think i have cluster headsches, she hadn't diagnosed it herself but then agreed with me. She then sent me to a neurologist who confirmed the diagnosis and wrote me a script for Oxygen.
All the best

« Last Edit: May 6^th, 2016 at 1:22pm by thierry »

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Hello from Key Largo.
Reply #11 - May 6^th, 2016 at 5:20pm

Hi Nebusoi and welcome

The reason for people wanting to make sure you have had a diagnosis from a neurologist or headache specialist is that it is not straightforward to correctly diagnose CH or many of the more complex headache types.

The diagnostic criteria can be found at - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

.
Quote:

A. At least 5 attacks fulfilling criteria B-D
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated
C. Headache is accompanied by at least one of the following:
      ipsilateral conjunctival injection and/or lacrimation
      ipsilateral nasal congestion and/or rhinorrhoea
      ipsilateral eyelid oedema
      ipsilateral forehead and facial sweating
      ipsilateral miosis and/or ptosis
      a sense of restlessness or agitation
D. Attacks have a frequency from one every other day to 8 per day
E. Not attributed to another disorder

It is easy for almost anyone to see if criteria A-D apply, but what is really hard to do is the last one which is making sure that nothing else is causing the symptoms. There are multiple other causes that can give the exact same symptoms which can include brain tumours, brain bleeds, eye problems, other headache types and more. We have had people post here on the forums with classical CH symptoms and having been diagnosed by a GP or often an ER doctor only for a neurologist or headache specialist to identify a different cause. Whilst it is most likely that you have CH, some of the other potential causes can be life threatening.

GPs are trained to be a generalist and do not get much training in headaches at all. This can be as little as 10-20 hours in total at medical school. When you consider that there a large number of headache types (you can see them on the IHS link), for many it could be down to just a few minutes coverage in their training. Neurologists get more training, but even they often have limited experience in complex headache types.

So what people want is for you to have the correct diagnosis so that you can get the correct treatment.

This is a process that all of us have gone through. Some of us had our GP diagnose us and had it confirmed but others have spent years getting incorrect ones. So we know just what it is like.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Hello from Key Largo. Reply #12 - May 6^th, 2016 at 8:26pm Yes! It's always best to seek out a Headache Specialist! As Doctors and neuro's have limited knowledge in this field! When it comes down to diagnosing and treating CH's. Hoppy
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nebusoi CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello from Key Largo. Reply #13 - Jun 28^th, 2016 at 7:36am I have an appointment with a headache specialist this Thursday. Thanks for the advice everyone, I feel better about having it confirmed.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Hello from Key Largo. Reply #14 - Jun 28^th, 2016 at 10:11am Hi, that's great Nebusoi. We are and will be happy to help anytime Please let us know how you get on with headache speciialist. All the best
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Hello from Key Largo.
Reply #15 - Jun 28^th, 2016 at 6:40pm

nebusoi wrote on Jun 28^th, 2016 at 7:36am:

I have an appointment with a headache specialist this Thursday. Thanks for the advice everyone, I feel better about having it confirmed.

Good move.

Before the appointment I'd write down all the questions you'd like to ask so you can make sure you cover everything in the appointment. Otherwise it is all too easy to remember things you meant to ask 5 minutes after the appointment ended.

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maz

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Re: Hello from Key Largo.
Reply #16 - Jun 29^th, 2016 at 3:05am

Hi nebusoi
the reason you need to see a headache specialist is because although your doctor may have diagnosed you, he has not treated you. You have been given med that did not work, and have stopped taking them.

There are different "headache" types which mimic CH, but they do not respond to the same meds, so it's impostant to get a diagnosis from a specialist who will know how to treat you.

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: Hello from Key Largo.
Reply #17 - Jun 29^th, 2016 at 3:45pm

Hey Nebusoi,

When you get to the headache specialist, be sure to ask for a lab test of your 25(OH)D. That's the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL.

80% of CHers are vitamin D3 deficient or insufficient. The other 20% fall between 30 and 40 ng/mL. CHers taking at least 10,000 IU/day vitamin D3 and experiencing a significant reduction in CH or a lasting pain free response all have reported an average 25(OH)D serum concentration around 80 ng/mL.

The following normal distribution curves illustrate 25(OH)D serum concentrations before start of regimen and after a favorable response. This data comes from a survey of CHers taking the anti-inflammatory regimen to prevent their CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

You can read about this regimen and its capacity to prevent CH at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Take care and please keep us posted.

V/R, Batch

« Last Edit: Jul 6^th, 2016 at 10:12pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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nebusoi

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Re: Hello from Key Largo.
Reply #18 - Jul 1^st, 2016 at 10:41am

I had my appointment yesterday and after an hour with the neurologist, she is convinced I have cluster headaches. She was skeptical at first, saying that it's so rare for women to have them. She believes that oxygen will be the way to go for my treatment. She wrote a prescription for a pill called Indocin for me to have on hand for my next cycle. She said many people respond well to these, but not all. She wanted me to have something until I am able to get into the office so she can get me set up with the oxygen prescription. I am to call when I have another cycle.

Thanks for the help everyone. I feel much better now being evaluated by a professional and also learned some things I haven't been aware of by reading online.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: Hello from Key Largo. Reply #19 - Jul 1^st, 2016 at 12:53pm Hey Nebusoi, Did you ask your neurologist for the 25(OH)D lab test? If you didn't, call your PCP and ask for this lab test. If he asks why, say you think you may have osteoporosis due to taking steroids for your CH. True or not, this usually works to get this lab test. Take care, V/R, Batch
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nebusoi CH.com Newbie Offline I Love CH.com! Posts: 8	Re: Hello from Key Largo. Reply #20 - Jul 5^th, 2016 at 8:31am I didn't ask while I was there. I didn't see your message until after. I'll look into it, thanks!
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Javi

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Re: Hello from Key Largo.
Reply #21 - Jul 12^th, 2016 at 2:11am

Hi Nebusoi, welcome in the forum.

Oxygen works well for many people in that it can stop most attacks in their tracks. Not sure if you can get oxygen delivered at home in the US. In my home country this is very uncommon.

Seems like D3 vitamin has helped many here, if you finally use it, please let us know how it went.

Regarding the lyrics getting stuck in your head, do you think it is related ot the hits? Does it happen to you in other circumstances? It happens to me whenever I feel anxious but I don´t think it is related to CH.

Good luck

« Last Edit: Jul 12^th, 2016 at 2:15am by Javi »

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