Hi,

Just gone through a very fraught and ambiguous seven weeks of bad pain.  Went back to see the doctor yesterday due to a change/escalation in symptoms, this wasn't my usual GP as she was off ill.  (Yep, even doctors get sick.)  Upon asking me what my symptoms consisted of, the replacement doctor began to cross-reference between a few of her books, performed a small physical exam around my eyes etc and thought the most likely cause was Cluster Headaches.  (Please bear in mind that I have now been waiting to see a neurologist for around seven weeks now with no sign of an appointment as of yet.)

I have had a look at a lot of the posts on the forum and concede that my symptoms seem to match those of other CH sufferers on the site.  However, what is troubling me slightly is that my symptoms started out in a different way and have since seemed to mutate into those associated with CH.  I was wondering if this had happened to any other members of the forum?  Basically, it started out like this:

Continuous low pulsing/pressure headache located exclusively around RHS temple area with occasional brief pain spikes.
extremely bad tremor in both hands, eventually working its way up my arms after around 5 days.
Numbness in RHS cheek below eye.
Episodic/brief confusion.

This ended up with a trip to hospital and, CT, MRI scans etc - all came back mercifully clear.  I was discharged and given, Propanolol, Diclofenac and Cocodamol 30/500's to take to combat the pain.

Around three weeks ago, I started exhibiting the usual CH symptoms, increased intensity headaches lasting between, 15-mins to 1-hr, waking up at the same time every night with/from headache pain, feeling shadows quite often, stuffed nose on one side and tearing of RHS eye.

I would probably say from using the Kip scale that I haven't experienced anything above a 6 or 7 as of yet, but having read about the experiences of the other folks on the site I am absolutely dreading the looming eventuality of a 10.

As mentioned, I would be extremely grateful if anyone else out there could share whether they have experienced a similar sequence of events that have precipitated the run-up to having CH.

Many thanks

GD

Welcome,

Just my opinion and surely others with far more experience will soon be responding. One thing I'm sure of: Get another opinion. You need to be seen by a headache specialist or a neurologist or a pain specialist who treats cluster headache. The hand tremor and confusion seem to point to some other neurological disorder. If the drugs you were given (migraine medicine, anti-inflammatory and narcotic) work, you probably don't have CH. First order of business: Get a proper diagnosis. Read enough here that you're knowledgeable about CH. You may find that you'll have to educate your doctors.

Good luck,

Ron

welcome G D
can't say any thing about your other symptoms other than what Ron said  althoe CH dose start differently for different people .
I my self questioned whether i had ch or not cos my attacks were not clock work regular to start off with.

any way a good and straight away form of relief is to drink a can of red bull or similar as quickly as possible at the start of an attack , this can reduce pain levels or even abort a low kip attack.

good luck

Nigel

Hi, GD,

When you were initially hospitalized, were you given a diagnosis?

I agree with what Ron said: you need to see a good neurologist, preferably a headache specialist, to get a proper diagnosis and better meds.  You may have a couple different things going on.  The symptoms you say started 3 weeks ago do sound like CH, but the initial symptoms you describe (pressure headache, numbness, and confusion) are not typical CH symptoms and need to be checked out by a specialist to make sure nothing more serious is going on.

I also agree with Ron that the meds you were prescribed are not the typical meds prescribed for CH.  If you have CH, you need to get different meds.  Cocodamol contains codeine and acetaminophen.  Narcotics are an extremely bad choice for CH pain control; they are slow, not very effective, and addictive.  The acetaminophen is useless for CH and will to bad things to you if you take too much too long.  If you have CH, oxygen and imitrex shots are the abortive meds of choice, and you will need to work with a neurologist to get a preventive medication that works for you.

Regards,
Laurie

G D wrote on May 8^th, 2010 at 6:55pm:

...Please bear in mind that I have now been waiting to see a neurologist for around seven weeks now with no sign of an appointment as of yet....

I don't know if the other responders noticed that part, but clearly you are trying to get an appointment with a neurologist - hopefully a headache specialist (?)

I'm sorry to hear you're having to wait so long for an appointment, but I'm not at all surprised. This is both typical and crimminal. What's the name of this Neurologist? The headache specialist in my town also has that special way of dealing with CH patients - requiring them to wait months for an appointment. Name: Jan Lewis Brandes, MD.

Headache specialists who make a CH patient wait months like that are rejecting the people who absolutely need treatment most urgently, and should be called out by name for their sheer arrogance, greed, callousness and mockery of the "do no harm or injustice" prohibition of the hippocratic oath. IMO.

Although CH has a tendency of sometimes taking years before crystalizing the classic hallmark symptoms, your initial symptoms do appear unusual.

Right call to have it diagnosed by a neurologist (who hopefully specialises in headaches) or better still a headache specialist.

The O.U.C.H. website can help you to locate a specialist near you (in the US and UK). Perhaps that will be a quicker way to get an appointment.

In preparation of your appointment I would keep a detailed diary of all your attacks and their length, pain level, possible triggers, medication that worked or didn't etc.

Best of luck.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Folks,

Thanks for the kind words and support so far - very grateful. (And slightly appalled at the treatment/scepticism some CH sufferers appear to suffer at the hands of trained medics.)

I should probably have been clearer on a few things first time round:

In terms of meds, I have now stopped taking Cocodamol and Diclofenac, although I do still take Propranolol - this is for tremor but the doc thinks this is unrelated to the headaches.

In terms of the confusion, this stopped around 5 weeks ago and has only reared it's head twice since then - but not in the last three weeks or so.

Upon leaving the hospital first time round, I was not given any diagnosis or attempt at an explanation - just sent out the door with a prescription for codeine, and the promise of a follow up appmnt with a Neurologist.  (This shook me up slightly as this is the first time I have ever been admitted to hospital in my life, I also hadn't been to see a Doctor for around six years leading up to this.)

I then went to see my GP, she nodded complacently as I told her what happened - she then prescribed Diclofenac/Propranolol - as well as Cocodamol.  (I have now been off the Cocodamol and Diclofenac for around 2-3 weeks, could be a rebound headache but from what I've read they don't last that long, are not recurring and don't exhibit many of the symptoms of CH.)

So after all of this, I then began to experience the CH symptoms, intense localised pain, waking up at the same time every night, tearing etc.  I booked a follow on appmointment with my GP but as mentioned, it was not my usual Doctor and she seemed to think the symptoms exhibited were close to those associated with CH.  (The tremor appears to be unrelated.)

She gave me a prescription for Sumatriptran, which thankfully, I have not had to use yet as most of the attacks since seeing her have been shadows or low-medium grade.

The Doctor is also in the process of chasing up my appointment with the Neurologist, this is at the Southern General Hospital, Glasgow, Scotland.  This place is actually quite well renowned for it's Neurological work - I believe there's some sort of Neurology institute on the campus.  I'm pretty loathe to go searching for someone else at the moment but I think if this drags on for any more than another couple of weeks at present condition, I could be sorely tempted.

Re: Red Bull - any alternative energy drinks you could recommend that have the same effect? (Had a bad experience with Red Bull [mixed with Vodka and Tequila incidentally] in my younger days - haven't been able to look at the stuff since...) 

All, once again - thanks for your help and input.

The Red Bull Brand doesn't seem to be necessary at all. As long as any other brand of energy drink has large amounts of both caffeine and taurine - similar to Red Bull - you oughta be good.

Relentless tropical - the green one tastes like lilt and has the required ingredients and amounts, and it's cheaper than red bull.

Nigel