Not sure of diagnosis

26 Feb, 2014 - 5:52 pm

Hello Everyone

I have recently been diagnosed with cluster headaches that is also causing occiptal neuralgia to occur at the same time by my Neurologist. Maybe it is wishful thinking but I am not too sure if I have been diagnosed correctly. If someone could have the patience to read my long explanation below and answer my questions it would be greatly appreciated.

Basically what is happening is that I first experience a tightening of my neck rapidly followed by a headache centred behind my right eye. Soon after that all my muscles tense on the right hand side of my face starting in my lower jaw and working it's way up to my upper jaw, cheek and eventually the region around my eye and forehead. As it works it's way up the pain intensifies until it becomes "all consuming". All the time this is happening my sinuses gradually fill up with mucus.When it reaches my eye region my right eye begins watering profusely. When it begins to receed it seems to follow in reverse order to the above. The neck loosens and the headach behind my eye reduces followed by the pain in my face slowly receeding down and lastly the jaw starts to loosen up.

The pain level is not always the same, All of them make me "down tools" but I have sorted them into 4 categories. Minor, Intermediate, Major and Extreme. The longer the epsiode the higher the pain level. They tend to last from a minimum of 20 mins to a maximum of 1.5 hours although on occasion the headache remains at a low level and the jaw and neck remain tight for a couple of hours after. I also find it beneficial to avoid light and noise.

In the first week they started, they were only occuring at night at around 6.30 pm every couple of days. The pain level was major. By week 2 the frequency increased to 3 per night (around 8:00 pm, midnight and 3:00 am) and the pain level varied. By Week 5 they had changed to guaranteed 2 per day (One around 1 pm and another around 8 pm) with the odd random one thrown in for good measure. If they happened during the day the pain level was generally minor or intermediate and at night they were major or extreme. Week 6 they still followed the same pattern but I started to get a reprieve. After an Extreme attack on the Monday the pain level went down to either minor or intermediate.

At his point in time I finally got to see the Neurologist and was put on Epden and Anpec. Since then the episodes have continued to occur once per night at an intermediate/major level of pain so I am not sure if the medication is working or if I have to wait for it to 'kick in".

After about week 2 I also begun to experience ongoing problems which continue inbetween episodes. My right jaw is out of alignment, my back and neck are continually sore and I have a tightness around the right hand side of the back of my throat. When I swallow I experience a "clicking" sound in my ear. Effectively I feel like someone has beaten me up.

In regards to pain relief, Panadeine Forte is useless for me. It does nothing. Mersyndol does help a little but only because it has the effect of putting me into a mild drug induced stupor. The only thing that I have found reduces the pain is shoving my head under a hot shower. Although this reduces the pain while I am under the hot water, I am actually wondering if it lengthens the time of the episode. It has yet to finish while I am in the shower and it seem to have a need to reach "critical mass" before the episode starts to recede. These days I am jumping under the shower only if it begins to become too much to cope with and I need a break from the extreme pain. it doesn't stop the pain but I think it does reduce the level.

So here are my questions....

1. Is it normal to experience different levels of pain with cluster headaches or are they always of the same intensity?

2. Is it normal with cluster headaches for the times in which they occur to change week to week (ie: started at certain times of the night changing to one in the day and one in the night guaranteed) or does the times they occur remain static during the cycle?

3. Does anyone else experience a tigtening of the neck before the onset of a cluster headache?

3. Does anyone else experience a tigtening of face muscles and the jaw moving to the right during a cluster headache?

4. Does anyone else on occasion ever have some of the symptons continue for a few hours (such as a minor headache and sore facial muscles) after the episode finishes?

5. Does anyone else find hot showers useful in relieving the pain or are they not a good idea?

Thanks to everyone who helps me in answering these questions.

Kind regards

Vaughan

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27 Feb, 2014 - 7:38 am

Hi Vaughn,
I'm also new to the sight and have found it most helpful, the answer to all your questions are on the left try the diaries first then have a look through the comments in some of the forums....cheers Tony

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01 Mar, 2014 - 4:27 pm

Cervicogenic headache?
Diagnosis by a headache specialist of correct type of headaches is essential.
Have a read of this one.
http://www.jaoa.org/content/105/4_suppl/16S.full
http://www.jaoa.org/content/105/4_suppl/16S.full.pdf+html

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01 Mar, 2014 - 9:39 pm

Hello Gothic

Thanks for the tip it is much appreciated. I actually raised this with the Neurologist as it had been suggested by someone else. Further research has forced me to agree with the doc now. I think I was just hoping it was something else as CH is not something I would wish on anybody. Fortunately for me either the new meds are working or I am coming towards the end of the cycle as it is Week 8. Still getting once a day headaches at around the same time but they a baby stuff compared to the hell that was occurring before!

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09 Mar, 2014 - 4:43 pm

Hi Vaughan,
My opinion only, from my experiences with CH.
1. I find they are always the same inhumane intensity.
2. Mine are always nocturnal, starting usually around 7-8 pm
3. Yes, my neck and shoulders are like rocks, I try to massage them to try and loosen things up.
4. I find my episodes are continual during the night, just get rid of one and back in 1-2 hours
5. I think everyone tries to find what works best for them, I haven't had the warm shower as I generally feel overheated in the face and use continual cold face washers.

About 2 years ago, once I finally knew the name for this evil condition, I found on a UK website, that oxygen therapy works because their research has found that there is a lack of oxygen in the blood.
Anyway, I gave it a go and to my relief it worked instantly and I did not have another CH episode until now.
Yes, I have ordered in the oxygen again and although I still have the dreadful bouts, usually 10 -,15 minutes on the oxygen is all it takes to stop it in it's tracks.
I may have to do this several times a night but it is a relief to know it is not going to go on and on and on.
I also found that Relpak works but only once the CP epsiode has started can you take it, it won't stop it from coming on.
I have been told that the oxygen therapy doesn't work for everyone but anything is worth not suffering mate, give it a go.

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