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Newbie (Read 1948 times)

saz

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Newbie
Mar 27^th, 2013 at 12:18pm

Hi my name is Sarah and I am 29 , I am new to this site, I really do feel for everyone but I am so glad I am not alone, here is the short version of my long drawn out experience

The first bout of headaches I had was in 2006 where the headaches would wake me up at almost the same time each night not long after falling asleep around 2am, I battled with this evil pain for around 4 weeks wth no pain relief as I just put these down to headaches, having the odd day off work from lack of sleep, no tablets would take the pain away, it was pain like I had never felt before, I decided to go to the doctors who referred me to a specialist who said it sounded like cluster headaches and put me on some tablets which seemed to help and the headaches became less and less until finally I was pain free..thank goodness that was over!!!

Then in 2011 I was hit with the worst attack imaginable, Somedays I was having 10-15 attacks a day the longest one lasted for over an hour, I went back to the doctors and asked for help and they gave me migralieve, codiene,other headache tablets and put me on antidepressants, one told me to take paracetamol, as you all will know nothing works, I begged them to look back over my notes from 2006 and give me what the specialist had given me and I said that he mentioned injections and oxygen, all the doctor said was "I don’t have a magic wand" that’s a bit extreme for "just a headache" I was ready for giving up, I couldn’t cope with another attack..

The pain got worse and worse, it was like someone turns a tap off and the pain is gone, I used to have a few hours of being pain free then the pain was back, on a scale of 1-10 I would say the pain was 11 and this pain would be so intense within a split second, no warning or anything, then it would go in a split second too, I could only describe this as someone drilling through the left side of my head and sticking a knife in my eye, the back of my head would hurt too and sometimes my neck, but all on left, my eye would feel bruised and be blood shot and it would appear I had a black eye…was I going mad or having a stroke I was so scared, the doctors were useless and left me feeling so alone, I would bash my head against anything close, pace around the room, roll around on the floor crying, screaming and begging my mum for more tablets, I thought eventually they have to work, I would have taken the whole box just to get rid of it... but I just had to ride this out and wait for it to go.

All in all this bout lasted for 6 weeks, I was off work for 6 weeks and luckily my bosses were great. I went to see every doctor at our surgery and it wasn’t until the 6th week that one doctor listened to me and looked back at my notes and said "oooh if Dr Sharrack said they are cluster headaches then that’s what they are and you need injections…finally someone has listened…

I never had to use the injections or order the oxygen as this bout had passed, but I had suffered for 6 weeks with nothing because of the doctors.

I went back to see the specialist who drew me up a management plan for next time..

Next time arrived this weekend, 2 or 3 attacks on Saturday, I rang out of hours docs up and they faxed me a prescription for imigran injections with no problem, I collected them and used both in one day, finally a tempory cure, they work Monday morning I was straight to my GP and I TOLD him what I wanted this time, I was ready to kick off…he's given me Verapamil, 20 injections and oxygen ordered and that was with me within an hour, I finally feel I have received the help I need and it's been one hell of a journey trying to get it.

I am still fairly new to CH as im only on my 3rd bout and know people suffer more than myself, I have read loads about them and everyone has my deepest sympathy, No one should have to go through this pain..once is enough…I hope everyone is getting the help they need….xxxxx

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Bob Johnson

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Re: Newbie
Reply #1 - Mar 27^th, 2013 at 1:03pm

Glad that you found us. If you have done much reading you will have seen that there is much experience and knowledge to be shared. Developing personal knowledge of Cluster is a majo tool for coping. This especially true because finding a skilled do, in this area of medicine, is oftendifficult.

But a cople of suggestions:
==
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
=====
When you write about a medicine you've used, always give the name (no guesses on spelling!), dose, duration of use, and your evluation of helpfullness.
====
If you have the option, working with a headache specialist is your best bet. Many docs have meager experience/education with Cluster.

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.
=====
Get some basic information under your belt.

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

(Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
=====

Three sites which are worth your attention: medical literature, films, plus the expected information
about 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

Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
a careful read.
======
Lastly, if you line up a specialist, stick with his treatment program before you start using any of the many suggestions you'll find here. If you combine seveal treatments at the same time it's impossible to tell which one is working (or not). Tral-and-error, one at a time is the watchword.

Bob Johnson

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saz

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Re: Newbie
Reply #2 - Mar 27^th, 2013 at 1:17pm

I live in England, The GP's that i have seen know nothing about cluster headaches or what treatment to give, the specialist I saw diognosed me in 2006 and I was tablets for 3 months, I dont remember the name of these though.

Until now I havent had any medication as I havent had any help what so ever.

Over the last 5 days I have been using Imigran Injections 6mg which have got rid of the beast within 10mins.

I have just had oxygen delivered to my home, which is 15ltr using a non re-breather mask...i was told to use this for 15mins which really has helped too..

I have also been given Verapamil 80mg to take but will need an ECG if i start taking them, which ive not yet, the O2 and injections seem to be working.

« Last Edit: Mar 27^th, 2013 at 1:19pm by saz »

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Potter Ex Member	Re: Newbie Reply #3 - Mar 27^th, 2013 at 2:12pm See if you can abort using nothing but the Oxygen. Lots healthier. Potter
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Guiseppi

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Re: Newbie
Reply #4 - Mar 27^th, 2013 at 2:52pm

What Potter said!

Start the oxygen as soon as you feel the beast tingling. Breathe deep, try and hyper ventilate. I find I can abort mnost attacks in about 6-8 minutes. It's all but eliminated my use of imitrex!

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 30 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 glad you found us, my only other suggestion is to check out Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; they have some specific info on navigating your medical system that might prove helpful.

Joe

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

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
Gender: male

Re: Newbie
Reply #5 - Mar 27^th, 2013 at 11:55pm

Hey Saz,

Potter and Joe have it spot on... Use the oxygen, use it early at the first sign of an approaching CH... and use it even before the pain starts. Don't worry about stopping after 15 minutes... Most physicians and even neurologists are clueless when it comes to the effective use of oxygen therapy as an abortive for CH...

You can suck on oxygen till the cows come home and not hurt yourself... You'd need to be breathing 100% oxygen for 12 hours without a break breathing room air before you'd start feeling the symptoms of pulmonary oxygen toxicity...

I'm an old US Navy fighter pilot with over 3000 hours in Navy fighters and all of that flight time was spent sucking down 100% oxygen from takeoff to trap aboard ship...

The average flight time was 1.8 hours for most missions, but I had several extended missions where they kept pumping me with JP from an airborne tanker for up to 7 hours before they let me trap back aboard ship so I could have a bladder break...

I always passed my flight physicals... so the bottom line is simple... don't sweat the time it takes to abort a CH with oxygen therapy... Keep on sucking/trucking until the beast is gone...

Take care and please keep us posted.

V/R, Batch

« Last Edit: Mar 28^th, 2013 at 12:27am 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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Mike NZ

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Oxygen rocks! D3 too!

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Re: Newbie
Reply #6 - Mar 28^th, 2013 at 5:49pm

saz wrote on Mar 27^th, 2013 at 1:17pm:

I have also been given Verapamil 80mg to take but will need an ECG if i start taking them, which ive not yet

80mg a day of verapamil is a very, very low dose for CH and at that level it is unlikely to be effective. Most people with CH need about 360-480mg a day but some go to over 1000mg a day.

If you do start it, it takes about 10 days for it to take effect so don't write it off before 10 days have passed. Similarly if you increase or decrease the dose (always do this in consultation with your doctor) it again takes about 10 days to take effect.

The reason for the ECG, which should be done on starting it, dose changes and every 6 months or so when taking it long term is that it can impact the PR interval which is associated with how the heart works. But if it is changed then stopping the verapamil is normally all that is needed. So the ECGs are there to look for potential issues.

Since it is medication that is used for treating high blood pressure, it will also drop that, so if you've already got low blood pressure and it drops further that can also be an issue.

However just about the only problem most people get with it is constipation as I'm sure the tablets contain a bit of concrete dust!

Having said all that, it can be a pretty effective preventive.

I also recommend the vitamin D approach too. This has had me CH pain free for over a year and it has had similar results for lots of people.

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