Hello everyone  [smiley=hiya.gif]

Apologies in advance for the long post but it I want to give you as much info as I can! I am a 30 yr old female living in Leeds in the UK and found your site after being dx with cluster headaches in A&E on Thursday. For the past few months I have been experiencing very severe headaches on and off; they are always on the right-hand side of my head around my eye and come on very suddenly. They have also woken me up in the night a couple of times and my right eye often feels ‘heavy’ during an attack. Prior to Thursday I had seen my GP about it a couple of times who thought it was probably migraines but as I also had raised bp she ran an ECG, bloods etc, all of which came back clear.

Fast forward to last Thursday travelling in the car with my husband (thankfully not driving!). Within what seemed like a split second I had my head in my hands experiencing the worst pain ever, again around my right eye, and I couldn’t keep my right eye open. After an hour or so the pain settled but my right eyelid continued to droop, hence our later decision to head to A&E. They ruled out a stroke pretty quickly but were concerned about viral meningitis. In the end the lead consultant suggested I try some oxygen prior to a lumbar puncture/head CT as he suspected it could be cluster headache. Lo and behold within 30 mins my face was back to normal, I was discharged and referred to a neurologist.

For some background my general health isn’t great as I also have 2 autoimmune diseases. I have had Crohn’s Disease for 9yrs and Ankylosing Spondylitis for 2yrs, both relatively severely. I am currently receiving the following meds for these:

40mg Adalimumab injections (weekly)
50mg Amitriptyline daily (to treat pain from AS)
30mg Lansoprazole daily
10mg Domperidone x3 per day
Calcium & Vit D supplements daily (for bone thinning)

As I have a relatively complex medical history I contacted my gastro consultant today and have been asked to attend an emergency appt. tomorrow as there is concern it could be caused by my drugs, in particular adalimumab.

So, apologies for all this info but I just wondered if anyone had any info/advice on the following:

1)      In your experience does this sound like CH?
2)      Is it possible for CHs not to follow an exact pattern (e.g. there has been a 2 week gap between attacks and I tend only to have 1/2 on any particular day)?
3)      Is there any connection between CH and autoimmune disease or the drugs I am taking?
4) Is it normal to get other headaches alongside CHs? I have a general headache everyday which is a walk in the park in comparison to the other one. They are often worse on the right side, though, so wasn't sure if they were connected or could suggest another type of headache?

I’d really appreciate any help you can give me. I feel so fed up with everything and coming to terms with yet another potential diagnosis is proving a bit hard to bear!

Thank you in advance and for taking the time to read.
Lucy

In my experience, you are truly lucky to have been diagnosed so quickly. I am still learning due to just recently being diagnosed. I hope you find all the help you need and get pain free soon.

Suggest you make contact with you excellent support group:   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I have never seen any reports associated autoimmune disorders with Cluster. And, yes, you can have other types of headache as well as Cluster.

I understand that you have the right to ask for referral to a headache clinic of your choice, by-passing the usual referral procedures. (Might confirm with the OUCH group, the original source of this information.)

That you have a neurologist in your camp is important. Hope he has experience with headache disorders for many of them have no skill working with Cluster.

See the PDF file, below. These are the kinds of meds which are commonly used for Cluster. If you are not being given meds from this list, it's time to discuss the doc's experience with him.

Educating yourself about Cluster is essential for knowledge gives you skill and reduces anxiety. Explore your OUCH site; the buttons to the left, here, starting with the OUCH site. Also,




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]
====
Follow your doc's guidance for some months before being tempted to try other treatments. It takes some time to adjust dosing on meds and to give them time to become effective before making any judgments about how effective the treatment plan is.

If you have a good paper supply, print out this free manual for a general overview. Written by one of the better headache docs in the U.S.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
====
Finally, read the messages here; ask specific questions.

---

Thank you Virginia. I can't say I feel very lucky given I already have two incurable, lifelong and very painful illnesses which I have been living with my whole adult life, but I think I understand what you mean!  ;) Unfortunately it is still early days as I haven't actually seen a neurologist and therefore have no ongoing treatment, but fingers crossed. I have already learnt lots from this site and OUCH UK, which is the good news...

Great, thanks Bob, I will get researching. I have been in touch with Ouch UK and hope to find a good neurologist v. soon  :)

loochieloo wrote on Nov 21^st, 2011 at 11:54am:

1)      In your experience does this sound like CH? - Yep 2)      Is it possible for CHs not to follow an exact pattern (e.g. there has been a 2 week gap between attacks and I tend only to have 1/2 on any particular day)? - Yep 3)      Is there any connection between CH and autoimmune disease or the drugs I am taking? I don't recall seeing that before, I doubt it. 4) Is it normal to get other headaches alongside CHs? I have a general headache everyday which is a walk in the park in comparison to the other one. They are often worse on the right side, though, so wasn't sure if they were connected or could suggest another type of headache? Yep, normal enough. Sometimes you might be experiencing what we call a CH "shadow". I’d really appreciate any help you can give me. I feel so fed up with everything and coming to terms with yet another potential diagnosis is proving a bit hard to bear! Can't blame ya for feeling fed up, please keep in mind though that many of us here do find significant CH relief.  :)

Keeping fingers crossed is a good thing....and also remember that most neurologists, unless they are headache specialists, do not seem to "realize" that these are Cluster headaches. They try to rule out everything which is definitely good but some also give up when what they try doesnt work, or they basically make you feel stupid. I hope you dont have to go through what a bunch of us have gone through with some seriously asinine doctors. Oh btw I am sooooo not bashing drs in general or even neurologists, just saying that more often than not, they seem to think cluster headaches are even more rare than they thought before. I have learned though that there are tons of us out there.....too many in my mind....

Thanks all for your advice. I am now waiting to get an appointment with a neuro, though I have been told it could be a while until that happens. In the meantime I have had to come off my adalimumab - the only drug controlling my Crohn's and Ank Spond - just to be on the safe side. I really hope it doesn't take too long as I'll be in a real mess if everything starts flaring! I have been doing some research and will be seeing my GP on Monday to request some oxygen, as advised by Ouch UK. Thanks for all your help, hope you're all doing okay  :)

Hi there Loo
Sorry to know you, in the nicest way as its crap when one has to find their way here. Im no doctor, it may be your drugs, or it may be CH. But as I live just down the road from you, I can offer one solid piece of advice, ask for a referal to Dr. Aldin at Pinderfields. He certainly knows his stuff and has been a godsend to me.
Hope everything goes well

Best wishes

Andrew

Be careful....I truly hope its not your meds as I know it must be difficult to come off of meds u actually need...and good luck with the appt, let us know how it goes

Hi Loochie,

I wish I could volunteer some useful advice but I'm also relatively new to the community. I just wanted to say that I think you're tremendously brave soldiering on as you do, I just wish I had your stoicism. Good luck and I'll be keeping my fingers crossed for you! :D

Apologies for taking so long to reply, I haven't been online as much for the past few days.

Thank you so much for the advice, Andrew, it's really helpful and good to know there's a neuro locally who understands what he is dealing with.

And Taciter, thank you for your kind words, that means a lot  :)

Hi Loochie,

That's interesting that you bring up a CH/autoimmune connection. It really struck a chord with me...I'm not officially diagnosed, but I've been told I have "soft symptoms" for lupus, but that at this point it could also possibly develop--if it develops at all--into fibromyalgia or rheumatoid arthritis.  I also remember my doctor telling me he's seen a few patients who have CH and fibromyalgia.  I know Crohn's is different than these conditions (I'm sorry but I am unfamiliar with your other condition). However, I wonder if there's a connection to inflammation? I'm pretty new here myself and still absorbing all of this information, but thanks for bringing this up. You've got my wheels turning!

Hi ck

Yes, I wondered about the inflammation link myself. I have a lot of inflammatory symptoms alongside my Crohn's and Ankylosing Spondylitis (which is an inflammatory type of arthritis but slightly different to Rheumatoid Arthritis). I have Raynaud's, have trouble with eye and skin inflammation and am prone to lots of soft tissue probs, such as tendonitis etc. Interesting that you potentially have fibro or RA, too. Could be a link, or maybe we're just special?!  ;)

Lucy

lucy,

special is nice  ;D let's go with that!