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Topic: This place is fantastic!!!! (Read 652 times) |
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calisto
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This place is fantastic!!!!
« on: Sep 9th, 2006, 9:58pm » |
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Hi to everyone.My name simon im 36 and i live in england.
i found this site about 3 days ago and already its been a help.I dont know what the attitude is in the u.s. about C.H. but here in england it sucks!!Doctors usually greet me with a blank stare which just screams "cluster what?".Ive even had dr's be openly hostile because of the amount of times ive had to go back for meds.Ive just started a bout of episodic clusters after being in remission for around 2 years and boy o boy have they come back with avengance!!! My fiances never seen me with an attack before,poor thing looks worried sick but hey,it shows she loves me right? lol!!I seem to have a hot water bottle permanently stuck to my head,anyone else find it helps??Its 2.50a.m. here and im a little embarrassed to say im scared to sleep cos the shadows have been creeping in for hrs and i know whats on the way when i fall to sleep.Cant get into the drs til monday evening so im coping without meds right now.God damn my heads sore!!!!In the past ive taken verapamil and codine phosphate,but since my last attack ive been taking propanolol beta blockers,i only take these to stop my hands shaking but as im a hairdresser theryre quite important lol!! I know i cant take verapamil with the propanolol can anyone recommend anything else.For pain relief in the past ive been given imigran but found it to be unhelpful.I seen sumatriptan recommended has anyone else tried this? I start a new job in 2 weeks, i gotta get rid of the beast pronto!!
Thanks for reading folks,its a help to know theres others out there!!
please feel free to email me if you have any helpfull advice.
Simon.
Itll never beat me,but hell,it gets hard!!
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lincolnowl69
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Re: This place is fantastic!!!!
« Reply #1 on: Sep 9th, 2006, 10:16pm » |
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hi simon,
im new to this site too, just posted earlier and had fantastic advice straight away, im not in any position to give out advice as i have been quite naive to medication due to the lack of knowledge our gp's seem to show and they really do frown upon you when you return on a weekly basis, but you will get some great advice on here. i use imigran injections and i find them amazing and i also use oxygen and again find it fantastic especially for daytime attacks. i have suffered for 10 years and the past year i have been chronic and its starting to do my head in now as for the last 6 weeks i have had attacks every 2 hours but i really have been picked up on ths site by the positive and helpful attitude in the members i have had messages from, stu
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Dape
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Re: This place is fantastic!!!!
« Reply #2 on: Sep 9th, 2006, 10:18pm » |
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Hi simon,
Will start off by saying Imigran is sumatriptan.
When you took it was it the injection or tablets coz if it was the tabs then it would take too long to get in to the system and is a waste of time.
I can quite agree with what you say about the quacks in england although there are some good 1`s out there you just have to find them.
Have you ever tried O2 as this can be 1 of the big weapons in our arsenal against the beast?
When you were on the verapamil what dosage were you on and which type the sr or bp as if the quack gives the wrong type and dosage you may as well be taking smarties.
I have had sucsess with hot water bottles and also with ice packs and i know others also find some relief this way.
Where abouts are you in the uk?, i am just east of peterborough.
Sorry about all the questions but it just helps to get an idea, for the people who know a lot more than i do, of where to start with the advice for you.
Dape
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calisto
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Re: This place is fantastic!!!!
« Reply #3 on: Sep 9th, 2006, 10:39pm » |
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Hi Davyp,
Many thanks for the advice,ive no idea what kind of verapamil the doc prescribed,i didnt know there were 2 kinds!!
What kind should i be taking?
The imigran was taken in nasal spray form and it helped only once.The dr gave me four sprays and he expected them to last me a week,they lasted 2 days.The 3rd time i returned for them he point blank refused,telling me they were too expensive!I told him to "stick them up his arse" walked out and changed my dr.My new ones much more helpful but i dont think he's going to be happy when i ask for oxygen on monday!!
Have you ever tried exercise as a form of pain relief? The shadows are creeping in and i can feel the beast in my neck trying to crawl its way to my eyes.Im thinking of hitting the excercise bike!!
Thanks for the help.
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calisto
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Re: This place is fantastic!!!!
« Reply #4 on: Sep 9th, 2006, 10:49pm » |
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Hey Stu,
Thanks for the support.Ive been episodic for around 16 years.I cant imagine being chronic my heart goes out to you remember the bit in the film aliens where newt says ripley "my mother said there was no such thing as monsters but there are,arent there?!" I think i'd rather face an 8ft alien than go through a bout of clusters!!
Do you work? An episode takes me out of work for a fortnight.How do you manage when theyre chronic?
Hang in there bud,dont let the beast win,it knows youre weak right now and its having its fun.But in the end you'll win!!
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Dape
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Re: This place is fantastic!!!!
« Reply #5 on: Sep 9th, 2006, 10:57pm » |
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Hi Simon,
It should be the BP verapamil with a start dose of 240mg a day with an ECG carried out before starting the course and further ECG`s carried out before uping the dosage.
The only liscenced meds for CH as listed in the BNF (the doctors presribing bible) are imigran injections and O2.
The O2 should be the high flow rate up to 15ltr`s a min using a non-rebreathable mask.
Have you been given a diagnosis by a neuro? i ask this as i have heard a few stories about GP`s saying they can no longer prescribe O2 that it has to be prescribed by the neuro.
You would have had a good case with your last doctor as they can not use the cost of a drug for the reason they will not give it and if you new doc tries that he has made a big mistake.
I have tried exercise to get rid of the beast but for me it is a trigger but i know there are people who have had benefit from exercise, check out the masterbation thread in the meds section as,( i am not recomending this course of action it is just that several of the posts explain about exercise).
Dape
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George_J
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Re: This place is fantastic!!!!
« Reply #6 on: Sep 9th, 2006, 11:17pm » |
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Hi Simon,
Welcome to Clusterville.
I'm in the US, but I'm sure the UK contingent will be contacting you soon--especially LeLimey (Helen) and chopmyheadoff. You'll get great information from the two of them, as well as many others.
I'll defer to their greater medical knowledge, but I first want to point you to the "oxygen info" link on your left. Take a look--this is a powerful and safe abortive that may work wonders for you.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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lincolnowl69
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Re: This place is fantastic!!!!
« Reply #7 on: Sep 10th, 2006, 5:25am » |
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hi simon,
yes i do work and its a nightmare, i work as a forensic photographer for the met in london, they are good as gold with me and understand what im going through and i try to keep my injections for when im working as the pain relief is almost immediate, but when it does get me down and im just so knackered a cant physically stand i just ring in and they send someone round to make sure im ok and stuff like that, so im very lucky really, even though this last few weeks i have been seriously considering medicl retiremant but hopefully that will pass when this has started to ease a little, stu
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LeLimey
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Re: This place is fantastic!!!!
« Reply #8 on: Sep 10th, 2006, 6:05am » |
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Hi Simon and welcome
Lets see what we can do to help you.
First off, how long do youre cycles usually last? I as this for a good reason as verap for instance can take up to six weeks to get working depending on how far you have to go increasing dose until you get to the point where you can maintain. You might find that verap would be more effective than the propranalol but I say that as I'm confused.. is the shaking hands because of the CH or something else? If it IS then there are treatments which will be more effective than the prop for CH which should then stop the shaking too. It's potentially a vicious circle there but I won't speculate I'll just give you all the info! It won't just benefit you but anyone else reading this.
Verap is commonly started in conjuntion with a prednisolone taper. Pred is a steroid so you need to be aware of it in case of other conditions. It works very well for CH but you shouldn't realy be on it for longer than three weeks as its a nasty old drug. You need to start it at around 80mg for it to be effective. If you want any more info on that then say and I'll get it to you.
You might want to consider Lithium too, thats very effective for CH. There are many alternative options too for non conventional meds which have had a lot of success and you may want to read through some of the threads on the meds boards. We'll answer all the questions you have with pleasure so don't worry about that!
You say your doctor is hostile.. change him hon, you deserve better than that. Do you see a neuro? If not you need to so ask for a referral. Its your right to be treated by someone who specialises in your condition. Its rare and its outside your GP's expertise - don't be fobbed off. I'll help you with that if you need it.
We've all done the nights of staying awake because we're afraid to sleep and we all still do too. You're not alone in that. Your poor fiancee isn't alone either. We'll all help support her as much as she wants if she wants to come along and post. CH is tough but seeing someone you love suffer is even worse in my opinion. Knowing they are in such agony and not being able to stop it is horrific.
I don't want to post too much all at once and overwhelm you. Take some time to read about and come back and we'll help all we can as I said.
I feel like a rose between two thorns here. There's you in Staffs and Stu in Lincs and I'm in the middle of you both in Notts! Up the midlands eh?! 
Helen
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Cathi04
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Re: This place is fantastic!!!!
« Reply #9 on: Sep 10th, 2006, 7:10am » |
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LOL>..Well, what have we here?? The Limey contention??
Seriously, Gentlemen, welcome, and I am sooo sorry you suffer CH, but very glad you found us!
Helen is a wealth of support and information.and, as she stated, she IS the rose between 2 thorns now! Perhaps we should change her name to Rose???
Simon and Stu, you are not alone any longer. You have family all over the world now. Ask away, get all the support you neeed........and , one little favor, please? Join in, when you can. It's a big boat and everyone tries to help with the rowing.
Wishing you BOTH PFDAN.and you too, Rose,
Cathi 
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lincolnowl69
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Re: This place is fantastic!!!!
« Reply #10 on: Sep 10th, 2006, 7:23am » |
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hi cathi,
your spot on about helen, and this site in general, i can't believe for 10 years i have suffered alone not wanting people to know and slinking off to a dark sound proof corner for fear of embaressment of being seen in a so called 'weak state', and taking all the s**t from our over paid gp's about cost and time wasting, i actually feel for the first time i have some back up and feel ready to go down to my doctors and tell him whats going to happen from now in...icant thank you all enough, stu
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Cathi04
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Re: This place is fantastic!!!!
« Reply #11 on: Sep 10th, 2006, 11:49am » |
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YESSSSSSSSSSSSSS! Stu! Now you've got it!! Clusterheads are the very strongest people I know!
Now, go out there and get what you need!
gET YOUR 02, and get a clustermaxs(I'll never get it right Helen), and be sure your Dr knows you're not a drug seeking creep....rather, you a person who endures more pain than that Dr will ever even fathom!
PF, gents!
Cathi
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calisto
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Re: This place is fantastic!!!!
« Reply #12 on: Sep 10th, 2006, 7:59pm » |
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Hi Helen,George and Cathi
Thank you all for your support,Helen ill try to answer some of your questions a little better.
I dont take the propanolol for cluster headaches,i take them to stop my hands shaking,I think my body releases too much adrenalin or something like that.I find that i cant work properly unless i take the propanolol (I take a very low dosage 40mg) .It tends to put the shit up folk if your cutting their hair around their ears and your hands are shaking lol!!
The pharmasist has told me that i cant take the propranolol and the verapamil at the same time do you know if theres any other preventatives that i can take in conjuntion with the propranolol?
During a particularly bad bout a few years back i decided to try a&e at stafford hospital.What a joke!! After 4 hrs waiting the very very young dr proudly told me that i had cluster headaches,which i told him i already new and had told him in the first place.He prescribed codine phosphate. The success of these has been a little hit and miss,they make me feel like shit after a while but if it stopped the beast id happily hammer a nail into my skull, u know?!
The dr i use now isnt too bad,Ive only seen him once during a bout of C.H 's but he's the only one in 16 yrs who referred me to a neuro but by the time i got the appointment my cycle had ended.She made do some funny tests like going cross eyed,touching my nose,walking like a penguin - you know the drill,and thankfully no tumors but yes i do have cluster headaches.She was the one who first recommended the verapamil.
I'll take this opportunity to say that i had to find out myself that i had cluster headaches,or rather my mom did.During one attack in my late 20's she wrote to the migraine trust and in the magazine they sent back was the symptoms of cluster headache and some discription of the pain we suffer.I could have cried when i saw it written down!!This was what was wrong with me,i wasnt being a baby it really was this painfull!!
My appointment is monday (tomorrow) at 6.10 ,Ill let you know how it goes but i dont think he's going to be very happy about giving me the O2.Im hoping the verapamil will solve the same problem as the propranolol (Trembling hands) then i can kill 2 birds with 1 stone.The dosage of verapamil i took last time (first time) was 40 mg then 80 mg then 120 mg.If i remember right it kicked in after about a week.
I cant thank you guys and this web site enough.Ive had this for 16 years and ive learnt more in 3 days than in all that time.I read the post about excercise last night and decided to give it a try,ive been shadowing all day so when it finally hit home i hit the excercise bike.Fantastic!! It gave me something to do with my legs and stopped me writhing around on the bed or pacing like a loony polar bear!!after 3 and a half miles the C.H had gone!! It was gone in 7.5 mins!!My fiance was laughing at the look of incredulity and joy on my face!!Gone in 7.5 mins!! The next one hit about 2 and a half hours later,soooo back on the bike but this one took 6 miles to get rid of but hey,it was gone in 20 mins!!At this rate im gonna have thighs like a wrestler!!Boy are my legs gonna be stiff in the morning!! At this rate Helen i could pedal up to say hello but i dont think sonya (My fiance) would be very happy on a tandem!!
Guys thanks for reading my ramblings,I aint quite ready to face the beast yet tonight and it really helps to get some of this down!!
Wish me luck with the doctor!
Simon.
Hang on.....oo yow callin' a thorn like?
The midlands rock dow they!
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calisto
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Re: This place is fantastic!!!!
« Reply #13 on: Sep 11th, 2006, 4:19pm » |
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Ok guys ive been to the docs......
Ill start by saying i took a huge printout that i got from this site that documents all the various treatments and their success rates.
As i said earlier ive had verapamil in the past but i couldnt take them with the proranolol i have to take now.This time he's put me on something called pizotifen all be it at half the dosage recommended in the printout im on 1.5mg.He said it was what a lot of specialists were prescribing now.Ive checked on the medication survey but cant find anything about it. Has anyone else tried this or can tell me a little more about it.
Ive also got the imigran injections u guys advised me on,he tried to give me the nasal spray form of this again but i havent had any luck with this in the past so i stuck to my guns and got the injections,but only 4!Hey he only gave me 2 at first 'til i asked him for more.Will there be a leaflet with these about how to inject them?do i use them as soon as i feel the pain or can i use them once the beasts in residence?If i try the imitrex tip on the left do i have to use the remainder of the drug in a certain period of time?
Ive even been given the O2 i asked for,although begrudgingly but seeing as how id got a printed and hand written letter from a neuro telling me to use it he really couldnt say no.It took the receptionist 20 mins to find the form then she didnt know hot to fill it in so just left me with it,then pulled a face when i asked to borrow her pen!!moody cow!! One of the more helpfull receptionist who know me there finally came across and sorted it.It should hopefully be with me in about 3 days.The chemists didnt have the imigran they've got to order it, i should get it tomorrow.So still no pain releif for tonight so i guess its back to the excercise bike,hell my legs are aching!!4 miles already today,my heads sore,ive lost my voice because ive been awake all night,im irritable,pissed off and really,really dreading saying hello to the beast tonight!!
What a ray of sunshine i am today huh? lol
Simon.
a p.s. for Helen....sonia (my fiancee) says a big thank you for the offer of support.Nice of ya was that!!
I try to get out of the way when i have an attack,i dont like her seeing me like that!!
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LeLimey
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Re: This place is fantastic!!!!
« Reply #14 on: Sep 11th, 2006, 4:32pm » |
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Your doctor has a point Si, pizotifen is what all the neuros were prescribing. 40 years ago! Its a very old med and not particularly effective. Having said that different things work for different people.
There is a leaflet in the imigran box. You should never inject it above the waist though and most people tend to stick themselves in the thigh. Its an auto injector so you literally jab the thingummydoodah (technical term) into your leg (another technical term) and press the button on the top. It can be quite stiff (the button) so don't be afraid to push hard (I wish I could think of better ways to phrase this but at least I know you won't forget it!) Hold it for about a count of ten so that you get all the contents into you.
When you use it is a matter of trial and error, you don't want to do it too soon but you don't want to leave it too long either. I used to inject at the point when I knew it wasn't just a shadow but was ramping up.
Have you got the Air Products phone number? If not its
0800 373 580.
I would suggest you phone them tomorrow and check they have your hoof. (home order oxygen form)
If not chase the doctors and get it sent asap. Ring air products daily to get updates and a delivery. You need to stay on top of this or it drifts. If you need any help with O2 then shout. I'm going to IM you my phone numbers so please don't be afraid to use them okay? I truly want you to get o2 asap and if it comes to a choice of you getting nagged by me or air products getting nagged..  I knew you'd see reason!
Give Sonia my love, that offer is permanently open! Stu is going to come over with his wife while Matt and Mary are here so maybe you and Sonia could join us and we'll have a mini meet and greet. The O2 is on me! LOL
Take care for now
Helen
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Dape
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Re: This place is fantastic!!!!
« Reply #15 on: Sep 11th, 2006, 4:49pm » |
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Hi Simon,
Ahhhh pizotifen, just like mini white smarties and about as useful (in fact i found the smarties helped me but that could have been the sugar rush from the 40 packs a day )
Yes there will be a info leaflet in the imi pack showing you how to inject, in to the top of the leg. It is fairly simple, must be if i can do it when i have a phobia of needles, just make sure the auto injector pen is primed screw it on to the vial holder and pull it out, it can be quite stiff, then you just press the auto injector against your chosen point press the button and hold for a count of 10. I tend to grab the imi when i have got to the point that i know it is going to go through the roof, it used to be when the O2 wasnt working which now seems to be all the time.
Which O2 supplier is your area covered by as it might be worth giving them a ring to make sure they received your hoof and that it was filled out right so that you get the high flow and both home and portable canisters.
Am sure others will be along to answer your other questions.
 Dape
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Dape
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Re: This place is fantastic!!!!
« Reply #16 on: Sep 11th, 2006, 4:55pm » |
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HMMMMMMM
Beaten again by she who knows best lol
Dape
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LeLimey
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Re: This place is fantastic!!!!
« Reply #17 on: Sep 11th, 2006, 5:00pm » |
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Just for that you're coming to my mini meet and greet at my house too Dapeybum!
Cos if you don't I'm going to ring you every day and sing to you....
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Dape
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Re: This place is fantastic!!!!
« Reply #18 on: Sep 11th, 2006, 5:03pm » |
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on Sep 11th, 2006, 5:00pm, LeLimey wrote:Just for that you're coming to my mini meet and greet at my house too Dapeybum!
Cos if you don't I'm going to ring you every day and sing to you.... |
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sounds good ive never been serenaded(sp) 
Any idea when you are planning this?
Dape
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LeLimey
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Re: This place is fantastic!!!!
« Reply #19 on: Sep 11th, 2006, 5:09pm » |
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20th or 21st? While Carrie is here as well as Matt and Mary?
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Dape
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Re: This place is fantastic!!!!
« Reply #20 on: Sep 11th, 2006, 5:23pm » |
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You are lucky i have checked my diary and i appear to be free on both those days (so far) In fact i am free any day after friday as this is my last day at work as i am no longer fit to do the job, 3 hours sleep a night isnt healthy when traveling 1500+ miles a week.
I look forward to meeting Carrie, Matt and Mary and of course You.
Dape
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LeLimey
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Re: This place is fantastic!!!!
« Reply #21 on: Sep 11th, 2006, 6:54pm » |
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Dapey I'm home all day tomorrow and I'll be back from Thursday afternoon.. give me a shout and we'll put the world to rights hon 
Has that appt come through yet or do I have to come and light a bomb under your doctors chair?
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calisto
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Re: This place is fantastic!!!!
« Reply #22 on: Sep 11th, 2006, 7:40pm » |
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Hi helen and dape.
Many thanks for replying to the latest.I gotta say my heart sank when i read what you said about the pizotifen...more crap!!!
If it does work am i going to have to wait like u do with verapamil?
been a bad day today,i guess staying awake all night again didnt help.Used the excercise bike again with success i cant believe it makes them go away.My legs are killing me,17 miles in one day is more than my legs are used to lol!!At least itll get me fit!!
Well im off to sleep and a dance with the devil in the pale moonlight!!Hey you never know i might not get one.............yeah right and my ass might grow wings and fly me to florida!!
Tomorrow dudes.....
Simon
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hell hath no fury like a cluster headache ignored!!
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tanner
CH.com Alumnus
New Board Hall of Famer
Adopt a POW/MIA I have
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Posts: 2449
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Re: This place is fantastic!!!!
« Reply #23 on: Sep 11th, 2006, 7:48pm » |
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Calisto, welcome and I too am very happy you found us. I think following my latest visit with an " expert" head pain management specialist today that the misunderstanding and sometimes trivializing of what Clusters actually do to a persons life is a global problem.
You are very lucky in that you have one of the "Cluster Angels" right there on your side of the pond. I will leave it up to you to figure out which of the many great UK members I am referring to because to single anyone out might just get me a dinner invite that I may not survive
Sorry to meet you here, but very happy to make your acquaintance!........Tim
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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calisto
New Board Newbie
I get knocked down,but i get up again!
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Posts: 37
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Re: This place is fantastic!!!!
« Reply #24 on: Sep 12th, 2006, 9:37am » |
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Thanks tim nice to meet you to!
Well......Last night was pure hell,8 hits in 12 hrs.Im dreading the next one,my heads sore to the touch and im exhausted.I get the imigran injections tonight,hopefully ill get a little reprieve.The docs rang this morning to find the name of the neuro which precribed the o2.They said they would fax it across this morning.
My mom rang this morning to see how i was then burst into tears when i told her.Which made me feel even worse.So i guess im back to telling her "im fine".
I keep snapping at sonia,i know shes only trying to help but when the beasts banging all i can do is bark!!I appologise lots later,she's so good - never holds it against me.Ive already decided im taking her somewhere special after this to make up for it,ive got a good un there!!
Theyre put a kitchen and new windows in two doors down drill,drill,bang,bang i swear i almost got out of bed and murdered them all with the drill this morning!!
As you can tell,im not a happy chap today lol......
...........but....
......i get knocked down,i get back up again,its NEVER gonna KEEP me down!!
he says through gritted teeth!!!
Simon.
P.s My legs are like jelly today after using that sodding bike so often lol. C.H or not i cant use it again today.
Anyone know the best way to use red bull?Do i drink it just as the shadows are creeping up or a can every few hrs?
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hell hath no fury like a cluster headache ignored!!
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