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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Newbie -undiagnosed
        
(Message started by: rai on May 18^th, 2004, 9:23am)

Title: Newbie -undiagnosed
Post by rai on May 18^th, 2004, 9:23am

Hi. My name is Rachel and I am 23.

I have been suffering from excruciating headaches above and behind my left eye for about 3 weeks now. I have had a couple of days pain free. But mostly I get them from 3-5 times a day. I thought that they were migranes, but realise after researching today that they may in fact be cluster headaches.

I get a very teary left eye and also a blocked or runny nose. Also a droopy eye lid and cannot lay still. Mostly when I am experiencing these headaches I cry and want to hurt another part of myself to take the pain away - but I never do...I just try my hardest to get through each one. Luckily I have a very supportive partner, who tries to nurse me through the pain.

However, I seem to have lost my appetite and have feel drained especially after an attack. I also feel very hot and sweaty, needing to drink emmense amounts of water, which never seem to quench my thirst. It doesn't help much that summer is finally happening in England.

Also, painkillers don't work and I always seem to find I attacks happen quickly and end quickly offen lasting 2 hours. Mostly I seem to get them before I go to sleep - which is usually pretty late because I am an insomniac and then early in the morning. If I don't have much sleep, I will definetely have more during the day. The first sign that I get is a slight pain and then it quickly gets more intense and I always know when it will end because the pain shifts a little and I get this pain in my ear and then back in my head and then suddenly it seems to hurt less and less and then goes.

The last time I had this same headache was about a year or two ago around this time of year and it lasted about 2-3months.

I also seem to be suffering from anxiety, irratibilty and lonliness. I feel confused after especially harsh attacks and my brain doesn't seem to work well. I have lost interest in my job and going out and find it hard to be around people at this time...I found it so hard to explain what I was feeling to my mum and older sister that I started too feel lost, confused, upset and even couldn't speak- developing a stutter and getting lost in mid-sentence.

I just need to know if this sounds like cluster headaches. I am going back to the doctor tomorrow and think maybe I need to be referred to a specialist to find out what is going on...I can't really continue like this. I need to be able to eat properly again - I am already underweight and struggle with food sometimes, and really need to get past this.

Sorry for writing so much, but it feels better to get it out and know that you'll understand how I feel, where everyone around me does not. Thankyou for listening to me and I hope that you'll reply.

Title: Re: Newbie -undiagnosed
Post by Racer1_NC on May 18^th, 2004, 10:07am

Those symptoms sound familiar sorry to say, but only a doc can tell you if you have CH. My advice is to find a good neuro and let him/her investigate. In the mean time, red all of what this site has to offer. Knowledge is power.

Bill

Title: Re: Newbie -undiagnosed
Post by Gator on May 18^th, 2004, 12:38pm

Hi Rachel, welcome to the website. I'm sorry that you had to seek us out, but glad you found us. Ditto what Bill said. You do need to get referred to a neurologist and also get an MRI to rule out anything in the old knoggin causing the pain.

In the meantime, read everything there is on this website and OUCH's site (links to the left), take the surveys and quizzes. An informed patient can better help the doc figure out what is wrong and how to better treat him/her.

You may also want to start a headache journal. Keep track of the attacks, date, time, pain level 0 (no pain) to 10 (worst pain you can imagine), what you were doing at the time of the attack and even what you ate. That will help the doc narrowing things down.

Again, welcome and good luck with the doctors.

Gator

Title: Re: Newbie -undiagnosed
Post by Filbert on May 18^th, 2004, 12:52pm

Hi Rachel
Welcome to the board but sorry you are suffering so much at the moment. Sad to say that your description of your symptoms sounds pretty much like CH to me but I am not a doctor.Bill and Gators' advice is very sound and I can only echo that your next goal should be to try and get officially diagnosed.
I e-mailed you earlier with other info cos I saw your entry in the guestbook.Hope you get some painfree time soon!!

Filbert

Title: Re: Newbie -undiagnosed
Post by Superpain on May 18^th, 2004, 6:06pm

I'm no doc either, but I'll bet my house I know what your diagnosis will be.

Sorry to hear it. Stick around and read up. Being informed is your best weapon.

Title: Re: Newbie -undiagnosed
Post by rai on May 19^th, 2004, 1:55pm

Thankyou for responding to my message. I went to see the doc and he said that it definetely sounds like its CH. I have been prescribed Pizotifen (Syrup) and solpadol (solubles) ( I have can't swallow tablets). Do you know if these are affective? He has told me to go back in a week to inform him of my progress on these. He said it was pointless to refer me to a specialist due to the waiting list - but I'm hoping that this helps.

If you have anymore advice, that would be great.

Thanks again for your support.
Rachel.

Title: Re: Newbie -undiagnosed
Post by vig on May 19^th, 2004, 5:30pm

"Pizotifen is used in the prophylaxis of migraine. It is an antihistamine and serotonin antagonist structurally related to the tricyclic antidepressants."

and regarding Solpadol

"This medicine contains two active ingredients, paracetamol and codeine phosphate. Paracetamol is a medicine used in the treatment of mild to moderate pain. It is also useful for reducing fever. It is not fully understood how paracetamol produces these effects.

Codeine belongs to group of medicines called opioids. Opioids mimic the effects of naturally occurring pain reducing chemicals (endorphins) that are found in the brain and spinal cord. They act on the opioid receptors in the brain and block the transmission of pain signals"

My experience with Trycyclic Antidepressants was, well, depressing, and codeine did NOTHING. There's better stuff. Read up and study. I think you can do better than that.

my $.02.

anybody else?

Title: Re: Newbie -undiagnosed
Post by Prense on May 19^th, 2004, 6:34pm

You hit it acurately Vig. Those might work ok for migraine or maybe tension. I would doubt highly that there would be any effect on CH.

The longer you wait to get on that waiting list, the longer you are going to wait to see a neuro. Suggest treatments you research here to your doc while you wait to see the specialist. You will learn very quickly that you must remain very proactive in your treatment of CH.

Chris

Title: Re: Newbie -undiagnosed
Post by pubgirl on May 19^th, 2004, 7:42pm

Rachel

It appears you are getting the standard Uk GP's "I haven't got a bleeding clue about cluster headaches so I'll treat migraine"
Your GP isn't even using particulary good migraine treatments either! These won't help you.

I suggest you arm yourself with all the info on CH treatment available on here and more particularly on OUCH UK's site as that has articles from the leading CH expert from the London Institute of Neurology on it (which UK GP's are less 'sniffy' about) You can also ring our Helpline if you want to talk to another Uk sufferer as all the helpline volunteers have CH and are very knowledgeable.

Also refer your GP to his own BNF (the latest edition of the GP's prescribing Bible which he should have in his office) which contains the details of the standard CH treatments in the UK (not painkillers OR pizotifen I might add) www.bnf.org is their website if you want to see the entry yourself.

I would ask primarily that your GP refers you to a good neuro specialising in headache conditions and in the meantime gives you some correct treatment.
If your GP is resistant to prescribing the correct treatment (Imigran injections/nasal or high flow 02 for abortives) and won't refer you to a neurologist, change your GP/ask to see someone else in the practice who knows about Ch or is at least prepared to find out.

Hope this helps, message me or ring the Helpline if you would like more info about treatment and support in the UK.

Wendy the Brit

Title: Re: Newbie -undiagnosed
Post by TxBasslady on May 19^th, 2004, 9:40pm

Welcome to the board, Rachel

I tend to agree with all of the above responses.

You need to find a doc that knows how to treat CH.

Read all you can......print out what you need.

PF vibes,

Jean