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        New Message Board Archives >> 2002 Posts >> A new sufferer?
        
(Message started by: WendyHowe on Nov 14^th, 2002, 5:20pm)

Title: A new sufferer?
Post by WendyHowe on Nov 14^th, 2002, 5:20pm

Dear Everyone. I have just registered on this site from the UK. You will not need the details as you all know, but I have just been into my own personal hell for the last two weeks and had no idea what was going on (have been a migraine sufferer but this was totally different). Having surfed around I was stunned/ecstatic to find that everything that has happened to me is here on the site. Thank god, it isn't a brain tumour which is what I thought.
I am seeing my doctor tomorrow to discuss what has been happening (she previously has been treating me with Zomig but this new 'thing' that has happened which I now know is cluster headaches does not respond that well)

Is there any good advice anyone has about what I should say to her as I don't think she will appreciate me going in and saying 'It's OK, I know what it is because I've found this great website which explains everything'
What should I try as first treatment as this really is the first time this has happened to me. I hope to God the last.

Thank you for listening everyone

Wendy

Title: Re: A new sufferer?
Post by fubar on Nov 14^th, 2002, 5:41pm

Wendy,

Just approach it as if you're NOT convinced it is CH. Ask your doctor if your symptoms (decribe them in detail) could indicate CH. If the doctor looks befuddled, then find a new doctor, or try to steer your doctor towards CH info. We have all had to educate our fair share of doctors.

You may or may not actually have clusters, so going in convinced of your own self-diagnosis is surely going to put most doctors off, but if you approach it as described above you'll have better results.

-Fu

Title: Re: A new sufferer?
Post by WendyHowe on Nov 14^th, 2002, 5:48pm

Thank you very much. Sensible advice . Is is likely she will not recognise what it is? I couldn't be more sure about the self diagnosis. And I couldn't be more frightened than I have been by what has just happened. Old cliche probably but I've done childbirth and this is worse.

Title: Re: A new sufferer?
Post by Charlie on Nov 15^th, 2002, 5:03am

It's probably too late but perhaps the best thing to do is to ask your doctor what he knows about CH because you think it may be a possibility but you want his professional advice. Give him time to believe he came up with the idea. They like that kind of thing.

Good luck and let us know how you made out

Charlie

Title: Re: A new sufferer?
Post by WendyHowe on Nov 15^th, 2002, 8:16am

Just got back from Doctor. She says my migraine has just taken on a new form and has prescribed anti serotonin medication and Brufen powders (can't see the point of the latter as normal pain relief of any kind has no effect). Oh well. Lets see if the anti serotonin works.

Title: Re: A new sufferer?
Post by Ree on Nov 15^th, 2002, 8:25am

OK GUYS DONT GET MAD... I JUST FIGURED I'D HELP HER OFF THE BOARD IF ITS NOT CLUSTERS...Migraine expert here (and supporter hubby is a sufferer of CH) I am a Chronic sufferer of Migraine... email me if you would like maybe we can toss around some ideas Ree16angel@aol.com and just write in the subject line that you are from Ch.com... Ree

Title: Re: A new sufferer?
Post by WendyHowe on Nov 15^th, 2002, 8:35am

Thanks Ree. Will email you as I don't want to clog up the site if it really is my migraine just changing its spots.

Wendy

Title: Re: A new sufferer?
Post by Charlie on Nov 15^th, 2002, 7:31pm

I hope what you have isn't CH. If these headaches do not wake you up or you can lie down durning an attack, they are almost certainly not CH.

For me this is a very reliable indicator. Let us know. Great news if your doctor is right.

Charlie

Title: Re: A new sufferer?
Post by WendyHowe on Nov 16^th, 2002, 1:01am

The reason I posted on the website is that I had a massive barrage of headaches where with migraine I only get one or two a month and I now had all these weird new symptoms. I did the CH quiz and found almost all the common factors (i.e. three or four headaches in 24 hours of incredible intensity. Almost all woke me up from deep sleep and were very hard to get rid of. I couldn't stay still, where with my migraine I lie in a darkened room)
The worst bit was the sheer number of them. Every day I had at least two , sometimes more. I got to the point where I felt like the kids on Nightmare from Elm street as I was too frightened to go to sleep in case 'Freddy' got me again.
The good news is that although my Doctor didn't even appear to know what CH was and insisted it was just migraine, I took the pill (Pizotifen) that she gave me and have had 7 hours uninterrupted sleep which is so wonderful. I feel very 'drugged' though.
Anything is better than getting that pain though so I am keeping my fingers crossed that she is right.

Having read all your awful stories I cannot imagine what your lives must be like and pray for my sake that I have had a one off event of cluster headaches.

Thank you to everyone, especially Ree for her kind and helpful email.

Wendy

Title: Re: A new sufferer?
Post by Charlie on Nov 16^th, 2002, 5:43am

Yikes.......sorry to hear that your attacks sound like clusters...at least to me. I am glad that you are getting a break. It's not unusual that your doctor knows little about CH. I believe some of them hate to diagnose it because it's very frustrating for them. There isn't a magic bullet.

Keep in touch.

Charlie

Title: Re: A new sufferer?
Post by brad267 on Nov 16^th, 2002, 8:44am

Charlie,

Nope, nothing magic about a bullet. An early-morning-black-coffee-toast to all those that had a bad night.

... And here's hoping the beast has better things to do today than to bother us.

Brad

Title: Re: A new sufferer?
Post by Ree on Nov 16^th, 2002, 4:58pm

Wendy your attacks do sound like CH attacks... talk to your doctor again and take information from this site.... good luck... ree (ps I did email you)

Title: Re: A new sufferer?
Post by WendyHowe on Nov 16^th, 2002, 6:32pm

Thanks everyone for good wishes, and thanks Ree, I got your helpful email.
Q1. How long are these 'preventatives' (I have Pizotifen) supposed to prevent for?
Q2 Do they normally make you feel weird? I stayed headache free for about 10 hours but felt very odd indeed (felt as if I was hungover and incredibly stupid and clumsy) and got blitzed by another headache again this afternoon when I mistakenly thought I was safe to have a restorative nap. Woke up after an hour with another blinder, and Zomig took over an hour to have any effect. Then I passed out for another hour or so and woke up feeling awful. This is worrying me as Zomig was my migraine 'lifesaver' in the past and ALWAYS used to work pretty quickly.

You are the experts as far as I can see so, is it back to the Doctor for something different or should I persevere with Pizotifen and Zomig for a while? i.e. do the preventatives take a few doses before they really work?

Wendy

Title: Re: A new sufferer?
Post by eyes_afire on Nov 16^th, 2002, 7:54pm

Hi Wendy. I was not familiar with Pizotifen so I decided to do an internet search. Some sites classify it as an 'antimigraine' med. According to one site Pizotifen is "an antihistamine drug that has a chemical structure similar to that of the tricyclic antidepressants... and has a blocking action on histamine and serotonin". Of course one always has to be careful about the information obtained online as we all know it is not always so accurate for clusterheadaches. Some sites did mention it to treat clusterheadaches (however they also called clusterheadaches 'histamine headaches' or 'Horton's syndrome' ??? ::) so those sites may be a little out-dated). I don't recall anyone here having success with Pizotifen. I'm not saying that it couldn't help you, I'm just saying that it is not exactly a first-line preventative of choice for clusterheadaches.

The sites also mention that Pizotifen has a sedative effect, so it doesn't surprise me that it makes you feel hungover and clumsy.

In my opinion, your doc is not very familiar with clusterheadaches and is probably 'in over their head'. Verapamil (calan) is the first preventative of choice because it has the best chance of success and very few side effects.

BTW... nice analogy: Nightmare on Elm Street. You know Freddy's got ya (CH beast) when you wake up at 2am and his claw hand is mincing and grinding your eyeball from within. Then thinking 'damn shoulda never went to sleep'. Sorry, didn't mean to be gruesome, that's just what I have compared it to in the past.

Title: Re: A new sufferer?
Post by WendyHowe on Nov 16^th, 2002, 8:02pm

Eyesafire!
Thanks, I looked it up too as I don't like taking drugs at all (apart from nice smoking ones)
Apparently it is a very 'British' thing that GP's here give out a lot of. so far it is crap.
Is the drug you mentioned a USA one?

W

P.S. I put the Freddy Kruger analogy elsewhere on the site because I can't believe that a Brit sees it like this when Freddy is part of your culture now isn't he? I saw my headaches like that from the outset. The fear of going to sleep and all that.

Title: Re: A new sufferer?
Post by eyes_afire on Nov 16^th, 2002, 8:23pm

Verapamil is a calcium channel blocker most commonly used to treat high blood pressure (but Verapamil does not help clusterheadaches by lowering blood pressure, but rather it helps through a different mechanism by blocking calcium channels). In the USA, the brand name Verapamil is the most common term. Generically it is know as Calan, so that is how it may be marketed in the UK, but I don't know for sure. It seems that for many people the regular release Calan is more effective than the sustained release Calan (Calan SR).

Hmmm... was the author of A Nightmare On Elm Street a clusterhead? ??? ::) The author sure does have the fear of sleep concept represented accurately. After watching that I thought: 'imagine that, being afraid to go to sleep'. Little did I know what I was in for...

Title: Re: A new sufferer?
Post by WendyHowe on Nov 16^th, 2002, 8:30pm

Eyes afire
I saw somewhere on here or Ouch a chart with all the names of all the drugs in different countries so I will go away and search, then, as it is now 2.30am, and my husband is already getting very very unhappy with me as he does not understand (how can he?) I had better go to bed and try and avoid Freddy or give him a kicking if he tries anything. I quite like the idea of fighting a person, it is better than feeling helpless or being tempted to turn the pain on myself.
Bet the author was a 'clusterhead' as you all say.

Title: Re: A new sufferer?
Post by Ueli on Nov 16^th, 2002, 8:52pm

Wendy,
From what I've read, Pizotifen is some sort of "happy pill" (mood enhancer), that is also used to boost appetite. More as a side effect it can sometimes prevent meegraines.
Zomig is used to abort M., but is much to slow for CH.
And last but not least, since you live in the UK, have you already visited the site of OUCH-UK at http://www.clusterheadaches.org.uk/?
There you can get lots of help in untangling the red tape of the NHS. If you don't live too far from London (you 'forgot' to write in your profile where you're from ;D) they may even hook you up with the team of Prof. Goadsby, the guru of CH.

eyes_afire,
Bayard Taylor Horton (1895 - 1980), while working at the Mayo clinic, described as one of the first (together with Bing) cluster headaches. I've heard there are a few countries in the world where they don't speak English, and for these it is not entirely without reason to call it 'Horton's syndrome'.
BTW, Horton reported already in 1938 the usefulness of oxygen, but for some morons something 64 years old is not yet news. >:(

PFNADs
Ueli

Title: Re: A new sufferer?
Post by SommelierCH on Nov 17^th, 2002, 2:42pm

Welcome to the most useful site on the web. I was prescribed Zomig ZMT 5mg. just last week because my insurance won’t cover Maxalt MLT 10 mg. any more (haven’t tried it yet, because I bought more Maxalt MLT, out of pocket, I know that works). They are both in the triptan family as is Imitrex. The Zomig ZMT is a (relatively) new form of Zomig that is a fast dissolving tablet that you hold on or under your tongue the same as Maxalt MLT, which has worked great for me the last 2 cycles (in conjunction with oxygen). Some people that say Zomig didn’t work fast enough for them might have been taking the regular tablets, since these are labeled for use on migraines speed might not have been the first priority at that time. The dissolving tabs go to work much faster, sometimes less than 10 min. During those first 10 min. you need to hit the oxygen to keep things under control while waiting for the drug to kick in. Since you can’t take more than 2 tabs of Maxalt or Zomig in any 24 hour period, you have to save them for the Big One. The oxygen is essential to control the shadows creeping up on you all the other times. Oxygen is prescription by the doctor and very safe to use, with little or no side effects. Go to the search button in the top right corner and search for oxygen, Maxalt MLT, Zomig ZMT and “triggers” (avoiding triggers goes a long way towards cutting down the intensity, duration and frequency of attacks). Also, go to the left column and read each category, read it all, you just can’t have enough knowledge about the Beast.

Good luck, and let us know how you are doing,
David

Title: Re: A new sufferer?
Post by WendyHowe on Nov 17^th, 2002, 2:58pm

David

Thank you so much. I will ask the Doctor for different type of Zomig as suggested as 2.5 mg tablets really are too slow, also I have had an email after registering on Ouch UK telling me how to get hold of the oxygen, and I'm keen on this as it seems more 'natural'. Probably very good for the skin too!.
Those Pizotifen really are pig useless as I have had three attacks in 10 hours since taking them, and they made me feel bad too so double useless!

Thanks to everyone as I am now as sure as I can be that this is cluster, not migraine and without this site and all of you, I would never have known and would probably just suffer with whatever the Doctor gave me for migraine.

Wendy (sorry for taking so long to come back but am on different time zone to all of you and have been doing headache free retail therapy!)

Title: Re: A new sufferer?
Post by Drk^Angel on Nov 19^th, 2002, 4:49pm

Welcome to the board! Sorry that the beast is slashing at your cranium with Freddy's glove. Good luck!

PFDAN........................... Drk^Angel

PS... BTW... Verapamil is the generic name of the drug, so you might have better chance that a doc will recognise verapamil, although the brand name Calan may be used there as well.

Title: Re: A new sufferer?
Post by WendyHowe on Nov 19^th, 2002, 4:50pm

Final post and thanks to everyone here. Second visit to Doctor. She says now definitely not migraine and 'probably' is cluster headaches. She says we will work together to find the best treatments for me and she is open to ideas (you all have given me plenty!)

I feel positive now that my Doctor and I are talking the same language and hopeful that we will find a way to stop this.

Thank you all for your kind words of support and advice to a 'newbie'.

Wendy