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        Cluster Headache Help and Support >> Cluster Headache Specific >> hello again 
        
(Message started by: agonymum on Jul 2^nd, 2007, 5:58am)

Title: hello again
Post by agonymum on Jul 2^nd, 2007, 5:58am

everyone ..

ive not been here for a long time i suppose i have been in denial trying to resist acknowledging that these vile headaches are a part of my life for ever .
ive been episodic since 2001 , and more recently think i am now chronic :(((
i am on 240 mg verapamil , and it keeps the attacks down to a less frequent , less painful level, but it doesnt give me any complete pf days anymore, i am wondering if i am becoming immune to it - is this possible ?

i shadow what seems like all day long and the past week have an attack at 5am , which is ruining my sleep pattern again , ( it was ok for a few weeks )
next is 8am , then lunchtime ish 12 or 1 , then teatime ish 5 or 6 , then 11 /12 midnight .
pain relief consists of banging with fist in the right places , shoving vicks up my nose and smearing ralgex on my head and neck so it burns ---mmm not pretty .
i used to use a searing hot water bottle but figured that made the ans symptoms worse , the heat made me palpitate and sweat more , so i got more and more panicky and couldnt breathe properly .
i have an o2 consent form to send off , i havent sent it , again im in denial ( one day with 2 mild attacks and i think im cured )
i will have to send it off , im stupid i know thinking that it will just go , its not .
ive been suicidal recently , i cant stand the torture of being chronic , i have no quality of life . im either having an attack or im recovering form one , or im trying to catch up on my normal life when not in pain , and i can catch up , it just knocks me down again .
i cry alot
im 41 , my family are sick of me , they have lost sympathy now , they dont understand
im going to see the doctor later today , i want to tell him how i feel and see what he suggests
i just feel like there is no hope , how do you live with chronic pain day in day out?

just one more moan ( sorry) but the pain has shifted , its still behind eye , over eyebrow , in face bones etc... but has also radiated into my neck , it feels stiff , like i havea board down my back and cannot move neck properly . ive heard this is the carotid artery ?
would acupuncture help this atall , has anyone tried it ?

road to diagnosis was teeth , ( had 4 out unecessarily ) , then ent . sinus problems ? not - medication side effects , mental illness symptoms ? eye problems etc..........

diagnosed last year , after 5 years . gave up smoking a year ago , dont touch alcohol ,and try to stay active , have my own horse so ride most days if i can ( my only salvation )

apologies for the woe is me attitude of this post , i dont want to be like this .

hugs and love and of course pf time for everyone x

Title: Re: hello again
Post by agonymum on Jul 2^nd, 2007, 7:14am

[smiley=huh.gif]paranoid

16 views and not one hello !

ah well :'(

Title: Re: hello again
Post by Redd on Jul 2^nd, 2007, 7:21am

The view numbers are most likely from visitors who are not registered and can't post. Please don't take it personally.

I'll be back later this morning to post more, but must get ready for work right now. Hang in there...rough cycles can bring us all down, but you can't let this thing win.

And by the way...... Hello.... ;;D

Title: Re: hello again
Post by agonymum on Jul 2^nd, 2007, 7:23am

:-[ thanks redd

Title: Re: hello again
Post by Kate in Oz on Jul 2^nd, 2007, 7:25am

Hello ;)

I'm so sorry to hear that you are hurting! Get your 02 consent form into the mail - or whatever. I was like that too - holding on to my gp's letter thinking oh, I'll be alright.... but no I wasn't!

I really don't have any good advice to offer and I wish I did, cos I can imagine the pain you are suffering. I've been a bit the same this cycle, if I'm not getting hits it's just been constant shadowing - however I do find that doing physical stuff - like moving the furniture around ;;D helps.

Have you seen the letter to collegues and friends? I gave a copy to my tutor at uni cos I felt bad that I was being so grumpy and not able to get my work in on time etc etc and she was so supportive, it really made a world of difference. I also asked her to watch the clip on utube to see what my headaches were like. Perhaps you could educate your family a bit, and they might be more supportive of you? If not, you've got family here ;)

I do hope you haven't gone chronic!! Perhaps you should see your doctor about changing the medication?? At the moment verapamil is working for me, but in the past I have found meds that worked for a cycle or two and then stopped, maybe if you tried something else you might get some relief?

I hope this helps a bit - I just got on to see if anyone had responded to my thread - and even just getting a reply - feeling like you've been heard - can be a good thing :P

I really hope you get some relief soon.... send off your consent form 8)

Kate

Title: Re: hello again
Post by michael on Jul 2^nd, 2007, 7:29am

Hi there

Sorry to hear you are going through such a bad patch.

How long has this last cycle been. Some cycles can be vicious and seem to be never ending but you must stay positive and be convinced they will end.

Stay strong. Pain free vibes are on their way to you

Mike

Title: Re: hello again
Post by Redd on Jul 2^nd, 2007, 7:56am

I'm done getting ready for work, and it appears I was seeing the clock wrong. I have almost an hour before I need to leave. (I need more coffee)... [smiley=laugh.gif]

Anyway.

First things first, we aren't doctors here, but we can pass on info that may help you.

1) 240 of verap a day seems somewhat low. Many people take as much as 800+ per day if tolerated. takes time to taper up on it, so that may be a good option to talk to your Doc about.

GET THE O2 FILLED...please...denial won't tame the beast.

Although I happen to disagree with the INHS criteria, it does state that Chronic is defined as 1 year of CH with no remission peroid lasting 30 consecutive days. That said, how long has this cycle gone on without remission? Do you have any other abortive? Imigran injections? Anything? Red Bull and other energy drinks high in caffine and taurine. Slammed at the first sign of an attack can abort or halt the progress of the attack. Many people find ice rather than heat on the face or back of the neck helps to cope. While tapering up on the verap at your doctor's instructions these tips can possibly help you cope better.

Please do use the collegues and friends letter, so that your family understands a bit better.

Any other questions just ask.

Title: Re: hello again
Post by ordinary_joe on Jul 2^nd, 2007, 8:10am

Hey Hello Again,

Without O2 I would be lost. I have had CH for many years. The one thing I can rely on - MOST of the time- to abort is O2. I keep a tank at home and one in the office. I am also getting a portable compressor to take on trips. I have done all the meds... they work for a while.
O2 has been my constant winner in this never ending- it seems - battle.

Title: Re: hello again
Post by agonymum on Jul 2^nd, 2007, 9:04am

THANKYOU so much :)

i am going to the doctors this afternoon (have already said that ) but now i feel less defeated and will have a better attitude for my appointment so thanks all again .

i will send off the form too and look forward to letting you know that i am a bit better instead of a crying little baby . :-[

Title: Re: hello again
Post by BarbaraD on Jul 2^nd, 2007, 9:18am

I hope you've not gone chronic, but if you have, you cope. I've been chronic since 97 - it's not easy, but you cope. You lead a fairly normal life and you cope. With or without family support (and I don't have family support - it's just a headache mom - get over it!)

HERE people understand - but unless someone goes thru this they just can't understand what we go thru. It doesn't seem possible that we can hurt this bad and then look just fine (oh yeah, I hear that all the time - you look ok! - yeah right and I'd like to punch your eyeballs out!).

Just hang in there.

Hugs BD

Title: Re: hello again
Post by agonymum on Jul 2^nd, 2007, 3:10pm

thanks BD , i think i may have gone chronic , it was a year in August since i was last at the docs , and ive been on the roll since then .
hugs to you for coping , my partner has just said to me try some of my ventolin , it works for my asthma . i just said no thanks its ok , ill wait for the oxygen , he then went in a mood and said well the pain cant be that bad , i would try anything if it was me . >:(

anyway ,
i went to the gps , he is re-referring me back to the neuro and doing an ECG on wednesday to see if we can safely up the verapamil .
also has faxed my 02 form off for me , so hopefully relief will be on its way soon.

thanks for all my replies , i appreciate the feedback so much . i do feel at the end of the road , you can only take so much :'(

i really admire and respect all other sufferers for coping so well and giving support on here , thankyou , lots of love to you all xxx

Title: Re: hello again
Post by LeLimey on Jul 2^nd, 2007, 4:47pm

I see you've mentioned verapamil - does your GP have you on any abortives such as Imigran or other triptans' at all?

You mentioned heat made things worse, you might want to try ice packs (wrapped in a tea towel!) or eve a bag of frozen peas. I've even sat in a car withthe air con on full whack and my nose near the vents - cold helps me alot.

Non med options that help are strong coffee and red bull - or cheaper equivalents! Caffeine is a vaso constrictor and thus very useful for aborting hits if you can get on it early enough. You need to drink them quickly though, no being ladylike LOL

I see you're in Warrington, ask for a referral to Dr Silver, he is a neuro and very highly recommended in the CH community.

Have you ever tried O2? Its a godsend for me, I wouldn't be without it. DEFINITELY speak to your GP about it asap.

If you need anything please shout, I'm only down the road in Nottingham and I'll happily call or pm you my number if you'd like to chat anytime :)
Take care
Helen

Title: Re: hello again
Post by agonymum on Jul 3^rd, 2007, 6:01am

hiya helen ,,

thanks so much for your reply. i have the O2 on order now so fingers crossed it works for me .
would love to chat sometime with you x

(btw , i tried the slugs of coffee at 5 this morning , i think it helped , it didnt last as long ( about 30 minutes ) but i might be confused .
brain is on a go slow , feel fuzzy :-/)

love to you xxx

Title: Re: hello again
Post by agonymum on Jul 3^rd, 2007, 6:17am

my name is debbie btw ;;D

Title: Re: hello again
Post by Wayne on Jul 3^rd, 2007, 6:35am

Hi Debbie

Sorry to hear you're going through such a bad patch, best way to get out of it though is to tackle it head on hey. The beast loves fear.

increasing the Verapamil seems like an excellent first line to take, I'm on 720 /day, no side effects and PF for 3 weeks now bar a few minor shadows.

My defence line 2 is Redbull, swallow a can high speed with the first hint of a hit and it chases it away. before the Verap took hold properly I used an OTC drug called Migril - Just caffiene and Ergotomine- in conjunction with the Redbull to kill the beast and it never failed.

I dont use O2 but many do and swear by it so I hope it helps you too.

Other than that a positive attitude (which I know is very difficult in your circumstances) is very important. you can and will beat this but you need to fight it hard hey.

Good luck and remember you are not alone.

Cheers,

Wayne