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Newbie.. (Read 2949 times)

samantha86

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Newbie..
Dec 29^th, 2013 at 7:52am

Hi its so good to find this site,
Ive been trying for ages to get my gp to take me seriously. At first they said it was just tension headaches and put me on beta blockers but when I looked them up I realised that none of the symptoms matched what I am experiencing. That's when I found that cluster headache symptoms matched exactly. So I went back to my gp and she is finally taking it seriously.... Im a mum of four young kids and at times I feel like the worst mum ever as I just cant cope with the pain....I would quite happily give birth over this any day. It just seems like a never ending pain. Ive had this attack for four weeks now and I don't know how much more I can take.Excuse the typing ive forgotten what sleep is... Cry

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Guiseppi

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Re: Newbie..
Reply #1 - Dec 29^th, 2013 at 9:01am

Welcome to the board Samantha. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson

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Re: Newbie..
Reply #2 - Dec 29^th, 2013 at 12:21pm

If you think that you will be sticking around for a time....

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
==================================
You don't appreciate how many women have made your statement--pain worst than child birth without anesthesia!

Don' be upset with you doc. Very few docs receive training/education in complex headache disorders. While the odds are that you have Cluster, this is a condition which is not cured (sorry!) but can be effectively controlled. That suggests that lining up a headache specialist now would be wise for you will need the skills & knowledge such folks have for a long time.

AND there are a number of disorders which mimic Cluster which are not headache disorders. This means you should not try self-diagnosis and/or self-treatment. (We have clinical studies showing how folks have wandered about for 5-6yrs+ before they found effective treatment, trying one doc after another. So, get a good start now!)
=====
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

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

; On-line screen to find a physician.

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

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

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

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
==============
But let's assume it's Cluster. As you seek a specialist you can also start to learn about how it's treated, etc.

Print the PDF file, below. It's a list of the most comonly used meds and, while these names won't mean anything now, when you start dealing with a specialist, this infro will be a good tool to discuss your options.
======
Spend time getting familiar of the material here--just dig around in the various boxes. Also explore:

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

. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
[Likely a bit deep right now but a good resource as your knowledge gows.]

Bottom line: don't lose your cool! The pain doesn't translate into seriousness! We've all gone thru this one and survived once we learn how to control the problem.

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

(96 KB | 16 )

Bob Johnson

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AussieBrian

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Re: Newbie..
Reply #3 - Dec 29^th, 2013 at 2:53pm

G'day Sam, and welcome. Yes, there is hope and there is also help.

First thing is to get a sure diagnosis as this will rule out certain other problems, some of which are quite serious, and means you can start a management routine to give you your life back.

Importantly, don't let anyone tell you it can't be CH because you're a woman. Not even Guiseppi!

Let us know how you're getting on and we'll help you every inch of the way, then kiss the kids for us,

Brian.

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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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Newbie.. Reply #4 - Dec 29^th, 2013 at 4:21pm Importantly, don't let anyone tell you it can't be CH because you're a woman. Not even Guiseppi! Let us know how you're getting on and we'll help you every inch of the way, then kiss the kids for us, Brian. EVERYONE knows girls only get migraines!! Joe..(hoping Linda doesn't see this! )
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Mike NZ

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Oxygen rocks! D3 too!

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Re: Newbie..
Reply #5 - Dec 29^th, 2013 at 8:10pm

Guiseppi wrote on Dec 29^th, 2013 at 4:21pm:

EVERYONE knows girls only get migraines!!

Guys get migraines too!

There have been far too many women told that they can't possibly have CH since "only guys" get them. This even appeared in some text books in the 1980s, along with the description that the guys who get them have lion like features.

Welcome Samantha

You've some great advice in the posts above from people who really understand what it is like to get headaches like you describe and the effort it takes to get a good, accurate diagnosis.

If you've not started a headache diary then doing so would be a good move as it can help with the diagnosis. Each time you have a headache take a note of the time / date, intensity of the pain, duration, location of the pain, other symptoms and anything else that may be connected (as this can help identify triggers).

Also start a list of questions you want to ask the headache specialist, write them down and tick them off as you go through them, taking notes. It is very easy (from experience) to finish and appointment and suddenly remember something important you wanted to ask.

Read up all you can about CH and other headache types, ask all the questions you can think of and people will try to answer them.

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steve1964

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Re: Newbie..
Reply #6 - Dec 30^th, 2013 at 12:10am

Greetings Samantha, have been a sufferer for about 25 years now. The first five were the worst. I was sent from one doc to another and misdiagnosed for years. Then one day I typed my symptoms into the internet and bang it was there. everything about my headaches, it was me. Along with the imitrex injections, I have found relief from taking steroids. they are a pill form my neurologist prescribes. Sorry I cant remember the name at the moment it has been about a year and a half since I wnet through a major cycle, but the steroids give me about a week of relief before he takes me off them. then after about thirty days my doc will give them to me again for another week. My cycles start with about one headache every six months then progress to one a month then one a week then every night then every time I shut my eyes for two hours. Those cycles last about three months before they finally go away so the steroids help me get some sleep for a week during my ugly few months of hell. On top of that I am a epileptic so sleep is crucial so I do not have a epileptic seizure. Sorry I cant remember the name of the steroid I am not at home at the moment and don't have the bottle with me. also find a good doctor who is willing to help and try anything that may help you. While my doctor is polish and I can barely understand him at times, he is willing to try anything and is especially helpful when I am in the middle of a cluster. Good luck steve. If you have any questions I don't really check this board very often, I just wanted to check in and wish everyone good luck. Ps try crushing up four aspirin and eating them also when the little thump is letting you know the beast is around. If you want to hit me up I am at lars231@yahoo.com

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Newbie..
Reply #7 - Dec 30^th, 2013 at 3:00am

If it is CH then aspirin or even the strongest narcotic pain killers make little real impact on the pain. Instead the emphasis is on killing the CH using an abortive like oxygen or imitrex.

Steve - have you got any preventive, like verapamil, lithium or topomax, which can prevent many of your CHs which will avoid you having to use steroids (probably prednisione) every few weeks for months, which can potentially cause health issues plus cover you all the time, not just one week in four.

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samantha86 CH.com Newbie Offline I Love CH.com! Posts: 2	Re: Newbie.. Reply #8 - Dec 30^th, 2013 at 5:14am Thank you everyone for all the help. I was at the out of hours gp last night and they gave me Zolmitriptan but that did bugger all and so it was another night of waking after an hour and a half with excrutiating pain so I am back at my own gp this afternoon. I don't think I can take much more...
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maz

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Re: Newbie..
Reply #9 - Dec 30^th, 2013 at 7:30am

Hang in there Samantha. There are treatments and drugs that work, it's just a matter of getting it right. Before I say any more, I'm guessing from your post that you are in England. Let me know if not.
If you have definitely been diagnosed with CH, then ask your doc for sumatriptan auto injections. They work for most people in 5 minutes and are my new best friend. But be warned, you may only be prescribed 2 at a time and most pharmacies don't have them in stock so you will have to go back the next day when they've got them in for you. If they work, then ask your doc to put them on a repeat prescription and when your cycle ends, keep collecting them for a few days so you stock pile a few and that will see you through the first few days of your next cycle.

Also check out "oxygen info". Highlighted yellow tab on the left of your screen.
Try out the energy drinks tip in Guiseppi's post - it's a big help for some people.
And finally look for posts by Batch about vitamin D3. If you send him a personal message he will give you all the info you need. I was sceptical about this at first because I've never been a big believer in suppliments. I always thought if you had a good diet then you were getting all you need, but I was wrong there. This regime of suppliments works for 80% of people who try it. It has certainly made a difference for me. Again, pharmacies don't stock the high doses you will need but I get mine from iherb.com.

Hope I've helped a little, and good luck with it all.
Maz.

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wimsey1

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Re: Newbie..
Reply #10 - Dec 30^th, 2013 at 9:01am

samantha86 wrote on Dec 30^th, 2013 at 5:14am:

Thank you everyone for all the help. I was at the out of hours gp last night and they gave me Zolmitriptan but that did bugger all and so it was another night of waking after an hour and a half with excrutiating pain so I am back at my own gp this afternoon. I don't think I can take much more... Cry

Yeah, we've all been there. Our visits to the ER aren't much more successfully than was yours. You really need to take control of this yourself and then pull doctors alongside to help. Read up on CHs and cluster like conditions, demand a headache specialist, keep a headache diary and bring it with you. Then, you can begin to make progress against the pain. Ask any questions and keep us informed. blessings. lance

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Mike NZ

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Re: Newbie..
Reply #11 - Dec 30^th, 2013 at 3:19pm

Hi Samantha

If you're in the UK check out Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

- it is UK based and has forums plus a phone helpline. It can help you with the NHS.

Since we have CH we totally understand the pain it can give better than anyone. This is something you need to work actively on, exploring all options to get to see a doctor with the skills and experience to diagnose and treat you. Find out who to see in the area you live (post it here and there may be someone local who can give a suggestion) and then work on seeing them. Phone up asking for cancellations.

Once you're the diagnosis then CH can be treated pretty effectively with a range of medications to prevent CHs and to abort CHs. You just need to get that first step with an accurate diagnosis.

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pubgirl

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Re: Newbie..
Reply #12 - Dec 31^st, 2013 at 12:22am

Samantha, I developed CH when I had a baby so I have a small idea how tough this is for you- I urge you to ring the OUCH Helpline 01646 651 979 (manned by specially trained fellow sufferers- they will call you back) they will understand the pain you are in, establish if your symptoms fit CH as your description of "never ending pain" isn't indicative, then help you get the right treatment . WtheB

« Last Edit: Dec 31^st, 2013 at 12:27am by pubgirl »

Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together

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