Hey,

I don't really no where to start, so I guess the beginning would be a good place..

About 4 years ago (aged 23) I started getting really bad pain on the left hand side of my head, primarily around the eye and temple, the 'attacks' would last between 2-3 hours and would then wear off leaving me exhausted. I went to the doctor who examined me and told me I was suffering from 'acute sinusitis'. As I had no idea what was wrong with me, I went along with it.

The 'sinusitis' kept coming back, near enough every 6 months, with 'attacks' 4-6 times a day for about a month or so.
I moved to London during this summer and by the end of July, it was 'sinusitis' time again, I registered at a local surgery and went along to explain I had 'acute sinusitis'  and needed medicine, it was then that the doctor told me I had no sign of sinusitis and it was probably Cluster headaches, due to the timing of the attacks and the severity of the pain.

I was referred to a Neurologist through the NHS, was given an appointment in October, needless to say this was far too long to wait.
I ended up paying out a lot of money to go private.
This 'cluster period' started around the 20th July, it is now the 3rd November....and no end in sight....
I have tried loads of 'preventatives' that do absolutely nothing, the only abortive I have found that works 75% of the time are 'Rizatriptan Melts' but I am only supposed to use these twice a day....
I am literally at the end of line, I have no idea what is happening to me, why it is happening and when it's going to stop.

I only joined here because last night was by far my worst attack, woke up at around 1am, right eye was bright red, swollen and tears were flowing down my cheek, it felt like someone was repeated stabbing behind my eye with a red hot poker, I couldn't take any meds as I had already had 3 in a 24 hour period...
It ended at 6.30am....Never have I ever felt anything like this before, I was ready to take my life.

I honestly do not know how much longer I can live with this, when I ask the Neurologist how long this cluster will last, he says he does not know...

I haven't done a full days work since this cluster began, the bills are mounting up, and I'm starting to get really stressed, which probably isn't helping...

I don't know what to do....and help or advise would be really appreciated.

Thanks

Scott

  Hi Scott hang in there buddy youv'e come to the right spot theres lots of info here read every thing.  I will start by asking if you have tried oxygen it helps about 70% of clusterheads in aborting an attack,  if that doesn't work get Imitrex/Imigran injections its much quicker than what your taking and if done right you can get up to six aborts a day with it(see the imitrex tips to the left).  What prevents have you tried my doctors dont know how to treat ch so you may not have got the proper meds.
  Best wishes for pf time soon,   Phil 8-)

Scott,

Sorry to hear what you are going through. It sucks.  What prevents have you tried.   It takes a while to find the right cocktail of meds to keep the beast at bay.  I take 720 mg of Verapamil daily, and it works most of the time.  In terms of an abortive, Have you tried oxygen?  A life saver for a lot of folks here.  Also, imitrex injections work for most people as an abort.  You are definitely not alone.    READ all you can here.  The information you find here will help you conquer the beast.  Best of luck.

Regards,

Malcom

Thanks for replying guys,

I have been on so many preventatives I've lost count....
Verapamil did nothing at all, I can't remember the dosage but i was taking 2 'high' dose pills at night and 2 'low' dose pills in the morning
I'm now trying Amitriptyline 20mg nightly, been on it for 2 weeks and again nothing so far...
I think that Imitrex/Imigran is marketed over here as Sumatriptan, I have tried the pills and the nasal spray with no relief, the Neurologist said the injections wouldn't work seeing as the nasal spray had no effect at all.
I haven't even been offered Oxygen, but I will be bringing it up when I go to see the doc again next week, if not sooner.

It's good to hear that I'm not alone, well not good, but comforting...

The thing that really worries me is that when I have had these attacks before, the longest they lasted was 4-6 weeks max, I'm now on week 15/16, and no sign of them subsiding.....I'm just hoping they haven't turned chronic....

Scott,

I'm a chronic and it is not the end of the world.  It just takes time to adjust and figure out what works and what doesn't.   The imitrex nasal spray never did a thing for me, but the injections stop a hit 90% of the time.   Get some samples from your neuro.  Verapamil does nothing for me until I hit the magic number of 720 mg. a day.   Keep reading.    I'm sure there is an oxygen pusher somewhere around here who will give you all the info you need.  Hang in there.  

Regards,

Malcom  

clusterbusters.com

Hang tough Scott your not done trying everything yet. Your neuro is wrong. Get the injections. Get 02,02,02!!! Your neuro can help there.
show him this. Keep on fightin your not alone brother.
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all the best from Montana
the bb

Thanks for all your advise, not feeling as crappy now...

I have taken notes on everything and will be demanding that the Neuro puts me on O2 and gives me the injections, from what I have been reading both of these seem like  'first line' treatments, beats me why he hasn't put me on either beforehand, especially as I'm paying for it all privately as well....

How long do the injections take to have an effect?
I'm using Rizatriptan wafers and they can take up to 30 minutes to get the pain to stop, I also find that if I don't take them within a few minutes of getting the 'shadows' they do ditto to help.....a bit of a bugger when your being woken up at 1.30am with the beast beginning to attack...

How expensive is the O2?
I haven't done a full weeks work since being struck down in July, so money is very tight...
Are any of you from the uk? if so, is there any kind of benefit I can claim?

Your wisdom is very appreciated...

 Oxygen is cheap but I not sure how much in London Im sure some one will have the answer for you though.  As far as Imitrex goes the pills and nasal spray are not very effective for me but the shots will abort atleast 95% of the time for me and it starts to abort in 5 minutes with almost full relief in 15 minutes.  Have you tried Lithium as a prevent?
    Phil

I haven't tried Lithium yet, is it a good preventative?
Can it not be dangerous though?.....

Once you get the aborts down and get on a proper treatment  plan  you can get your ass back to work. ;) Both 02 and imitrex injections abort within 10 minutes. I cant believe your neuro has let this go on this way ,what a turd.
There are limeys around here but it may take some time before they see this.
OUCHUK is a group on your side of the pond have you checked them out?
Keep up the fight
thebb

 Here is a list of meds for ch
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hope the link works print it off for your dr.
Phil

I did check it out briefly, but it's a £10 to join.....£10 that I don't have right now.....
And it doesn't seem as user friendly as this, I checked out their forum and there wasn't half as many topics and info as there is on this site.

It really sucks about the Neuro....obviously I didn't realise at the time he wasn't offering me everything....and it's costing me £260 a time to see him.....I bet that's why he's kept his mouth shut......b*****d!!!!  [smiley=bash.gif]

Cheers Phil

  Hang in there Scott you will find some thing that helps,  call your dr. and see if he will atleast give you some o2 without having to have another appiontment.  If you read the list you will see Amitriptaline is not the best for ch I took it years ago and it did nothing, but it has helped a few.   Good luck,   Phil

They charge you to join!! WTF? There is a paypal button here to donate but that is optional. You just keep on fightin and we will help all we can.
Check out the tabs on the left and go to the meds board and gorge yourself on information. If you go back some pages you will find information on meds in your country. Its all there.
the bb

Welcome Scott.
Today is your lucky day, for you have found this site.  Knowledge wins over fear.  
This affliction can be managed.  

The advice you have been given is good advice.  
B$

Seriously guys, thanks for your help and advice today.

I honestly had no idea how today would have ended if I hadn't found this site.

It's comforting to know that your all out there.

I would offer to buy you all a drink.....but I have already found out what happens when you mix the beast with the beer.... ;)

Quote:

I would offer to buy you all a drink.....but I have already found out what happens when you mix the beast with the beer....

We're big coffee fans here. :D All praise goes to DJ he's the webmaster. [smiley=headbanger.gif] [smiley=headbanger.gif]
all the best
the bb

Does coffee actually help?

I drink 4-5 cups a day and still get violated by these attacks....

It sure does Scott. But it's the caffeine. Energy drinks as well. Some will abort with drinks energy drinks and follow it with coffee. You have to get it at onset though. The coffee has to be very strong. I have aborted many a CH with just caffeine. Mix that with a little 02 and you will save lots of pain.
:)

Hi Scott,
   
    Glad to see you are getting some good infor here.  I can vouch for the oxygen. I just got hooked up with O2 and much to my surprise, got immediate relief.

    I used to think caffiene was a trigger and stayed away from coffee.  After getting involved here, I drink coffee all day.  I'm not sure if it does anything but I just like coffee.

    Sounds like your doc needs to be "FIRED"

                                  Good PF Luck To Ya
                                          JPC

Strong coffee and energy drinks with 1000mg of Taurine are good [smiley=thumbup.gif]

Looks like I better get some red bull in then....

Just one question....

I get really hot while having an attack....I mean cook from the inside out.
I'm not sure what effect coffee would have on this, as it is, I seem to have an attack at the slightest change in temperature, be it hot or cold, won't drinking a hot drink while sweating myself to death do more harm?

Try iced coffee and an ice pack on your head while getting hit. :)  
I forgot to add red bull is great but dont drink it all day just slam one down when you feel a hit coming.

I've just prepared the coffee in the fridge and ice pack in the freezer, now it's just a matter of waiting.....I'm due one at around 9pm (uk time)...not long to go and I actually feel like I might be able to fight it now...

Quote:

I get really hot while having an attack....I mean cook from the inside out. I'm not sure what effect coffee would have on this, as it is, I seem to have an attack at the slightest change in temperature, be it hot or cold, won't drinking a hot drink while sweating myself to death do more harm?

read this is may explain the hothead.

Quote:

P. D. Drummond and J. W. Lance From the Department of Neurology, The Prince Henry Hospital, Sydney, Australia. Eleven patients were examined thermographically during spontaneous cluster headaches and 22 during attacks induced by nitroglycerin or alcohol. In cluster headache, heat loss increased from the affected orbital region, and in some patients, this spread above and below the eye, down the nose, and to the affected temple. Inhalation of 100% oxygen reduced or abolished cluster pain in 22 of 25 instances, and asymmetry of heat loss then disappeared. Since the unilateral increase in blood flow usually followed the onset of pain in affected areas, the vascular changes of cluster headache are probably secondary phenomena, initiated by a vasodilator pathway, with the trigeminal nerve as the afferent and the greater superficial petrosal nerve as the efferent limb.

:D

Wow.....where do you get all this from?

The burning up thing sucks....the only thing that kinda helps is sitting in front of a 16" fan, and even then it doesn't do much...

I can feel one coming on now, near enough dead on 9 as usual...time to prepare... :'(

Hang tough Scott. There are many here that have studied this condition obsessively. I am just one. 29 years of battle helps too ;)
Kick some demon a$$ now.
the bb

 15 years of battle here 1000's of years total on this site.  Hope to see you back online soon hope you got some Red Bull and slammed it.
  Keep fightin,   Phil

Hi Scott -
I'm here in the UK too and if there is anything I can do to help I will. If you want to talk anytime send me a pm with your phone number and I'll call you

Regards
Helen

PS This bunch know me well and will vouch for the fact that they don't come meaner, eviler (is that a word?!) or shorter LOL

Listen to Helen...or get the broom ;D
Call her you'll be glad ya did. ;)

It's just more or less finished, about 55 mins, it hurt like f**K and I feel like crap now, rizatriptan didn't work again, the cold coffee didn't really do anything, except taste like cold coffee.....ice pack went down a treat on forehead but couldn't put it anywhere near eye or temple due to the pain, going to grab some fresh air.....and try to find a new head.....

Hi Scott - the cold fresh air should help. It's the first thing I do when getting hit, get cold.. anyhow, check your pm's!

Hoping you get some PF time now
Helen

More or less clear now....beats me how they come on so fast and then just disappear...

Thanks everyone for you help, you guys rock... [smiley=headbanger.gif]

 Welcome back Scott sorry it took 55mins,  if you drink 4-5 cups of coffee a day it hard to abort with the coffee get some Red Bull and slam it down at the first sign of a hit.  Your Rizatriptan my have aborted the hit it just takes way to long you need to try to get the sumtriptan injections works 90% of the time and only takes 5-15mins and o2 helps most clusterheads.  Call your doctor tomorrow and call Helen tonite.
 Hope for some pf time for you,  Phil

Hang on man, I'm 17 and I suffer since I was 13. My last cycle was hell, I had no Idea that i can scream and cry like I did. You must see a pain relief doc!!!

Guys, are you crazy?
Taking 720 mg a day of Verapamil can cause a shit load of harm!
Overdose of Verapamil can kill your heart...be careful!

Actually there is one thing that can break the pain cycle for sure and it's Lithium, but again you should go to a Pain relief clinic, a simple nuerolog can't really help you..

Had my worst night in 2 months, hits at 23.30, 2.00 and 8.00, rizatriptan did nothing for the 23.30 but it was only a 45min-ish hit, had to ride out the other 2 as I had already done my 2 wafers, both around 90 mins, they seem to be getting gradually worse, especially all the crap that happens to the eye and temple, the swelling on the temple is like really noticeable now, and I couldn't even open my eye, the most swollen up it's ever been. Called the Neuro, can't see me until next Thursday (13th)....Trying to get a GP appointment to get some O2 fast, the pain is just getting far too intense

Leon wrote on Nov 4^th, 2008 at 3:55am:

Guys, are you crazy? Taking 720 mg a day of Verapamil can cause a shit load of harm! Overdose of Verapamil can kill your heart...be careful!

Leon, you are young.  You are new.  You are not a doctor.  So we will cut you little slack.

There are many that take verapamil up into the 900 mg range.  None of them are dead from it.  YES, it is done under a doctor's direction and care.

Please know what you are talking about before you falsely scare someone that does not know better.  If monitored properly and administered properly, it is ok to do.  It is the level that some have to reach, before proper results are achieved.

Welcome to the site, Leon, but please be careful of the comments that you make, when you don't know any better.

Chuck

 Sorry to hear about the rough night your not alone hope your gp calls soon and gets some of tools you need.   Get some Red Bull for now it doesn't work every time but if you havn't tried it then I highly recommend it.
       Phil

P.S.  LEON dont give out bad advise 720mg of Verapamil is not for everyone but that is up to a doctor,  most doctors require ekg's after a dose of over 480mg.

Hi Scott!

Sorry to hear that you're having such a hard time, I've had CH since 2000, every spring for 3 months (Changed last time to Winter and now I got it in the fall.. haha beastie laughing..).

Usually I have used Imitrex as an abortive, I have never used any preventatives for it. I tried something different this time. My cycle started early september, and I decided to go without any medication this time. Using Imitrex might prolong the cycle and also it can cause rebound headaches.

As I am going into remission now, it might be that I have shaved off 4 weeks because of not taking any meds. I don't recomend it to anyone of course. At least the k10's has been fewer this time around, only five major attacks when I peaked 3 weeks ago.

What helped me alot was doing push ups at the slightest feeling of shadow or at once when I have been woken during nighttime. Your body takes up more oxygen when you exercise hard and I have aborted most of my CH's like that. It doesn't help on the k10's though, so might want to have O2 for those.

The peak is the worst of course. hit every other hour in the evening, and every hour while sleeping. 7 times at most in one night.

Hope you might be peaking now, and that you get some well earned painfree days and nights!

No need to be scared, try and not change routines and sleep patterns too much, this will pass sooner or later.

Oh yea the coffee is not bullshit, I am big coffee drinker in the daytime, but it is still effective to abort headaches regardless. Steaming hot coffee in a big mug. Drink as fast as you can when shadowing, or feel CH onset.

Cheers guys,

Believe me I'm taking it all on board.
Not sure the hot coffee would work, especially with the hothead and everything, but I have been out and got 2 6 packs of red bull...

Is there any way to stop the swelling around the eye and temple?
I've noticed that my right eye is now nearly always 'droopy' looking along with the corner of my mouth, almost looks like I've had a stroke or something...

Some years ago when I had a particulary nasty cycle, my left eye became droopy and has stayed that way ever since :( Doesn't mean it will happen to you, it might get back to normal when you come out of your cycle. It's called Horners syndrom and is another little kick in the nuts that CH deals out.

Scott Lawrence wrote on Nov 4^th, 2008 at 7:20am:

Is there any way to stop the swelling around the eye and temple?

You may laugh at this, but an old model/movie star trick that supposedly works, put Preparation H on it to reduce the swelling.

They use it to get rid of the bags under their eyes when they had a lil' to much fun, the night before ...

Chuck

What's 'Preparation H'? I've never heard of it over here

Think it is an american brand hemmoroid cream, probably won't do anything for your Horners syndrom though since that does not come from fast living ;)

lol

You keep on battling Scott. As you continue, you will gain knowledge and information. Your fight with this will become easier. If you have any specific questions, shoot them out there. We are all with you.
Glad your still with us
thebb

Thanks for caring Leon. Here's the poop on Verap for CH.
Quote:

Cardiac Abnormalities Associated with Verapamil When Used to Prevent Cluster Headache [ARTICLE] Goodman, Alice ARTICLE IN BRIEF ✓ Based on findings of cardiac abnormalities in patients taking verapamil for cluster headache, investigators recommend that these patients be given an EKG at baseline, during dose escalation, and every six months for long-term maintenance. Verapamil, a calcium-channel antagonist approved for treatment of cardiovascular disease (angina and hypertension), is commonly used as a first-line medication to prevent cluster headache. Although this drug is highly effective in preventing the excruciating episodes of cluster headache, its effectiveness comes with a price - cardiac abnormalities. An Aug. 14 study in Neurology found that 18 percent of cluster headache patients who had been referred to a headache clinic and treated with verapamil had possibly serious EKG abnormalities (69:668-675). Cluster headache is typically characterized by severe daily attacks of unilateral head pain that occur in a cyclical pattern, or clusters. Bouts of cluster attacks can last from days to weeks, followed by long periods of complete remission. The disorder can be difficult to treat, and patients with cluster headache are often desperate for relief. The doses of verapamil used to treat cluster headache are much higher than those used to treat cardiovascular disease. Once you step into the arena of 'neurological' doses of verapamil [as opposed to 'cardiovascular' doses], dangerous side effects can occur, said senior study author Peter J. Goadsby, MD, PhD, professor of clinical neurology at the Institute of Neurology at the National Hospital for Neurology and Neurosurgery, Queen Square, London, UK, and the department of neurology at the University of California-San Francisco. Verapamil is approved for cardiovascular indications at doses of 180 mg to 480 mg/day. The drug comes in two forms: short-acting verapamil and sustained-release verapamil. In the current study, patients were treated with short-acting verapamil in 80 mg increments. The range of doses of verapamil was 240- to 960-mg/day, with a median dose of 516 mg/day. This is similar to doses used in clinical practice by neurologists who treat cluster headache, Dr. Goadsby said. Use of verapamil in cluster headache is off-label, and there are no large, well-designed, randomized, controlled trials to support its use. Dr. Goadsby and colleagues have a referral practice at the Headache Clinic of the National Hospital for Neurology and Neurosurgery where they see a greater number of patients with cluster headache than would be seen in general practice, since this is a rare disorder. (Cluster headache occurs in 0.3 percent of the population, while migraine occurs in 13 percent.) They became aware of the serious cardiac abnormalities sometimes associated with verapamil when one cluster headache patient taking the drug had complete heart block. This wake-up call led to the current study, which was designed to document the extent of cardiac abnormalities in patients treated with verapamil. We found that not only do cardiac abnormalities occur, but they also occur in about one in five cluster headache patients. We were quite surprised by the magnitude of the problem, Dr. Goadsby commented. STUDY POPULATION The study was based on patients who attended the Headache Clinic at the National Hospital for Neurology and Neurosurgery from September 2001 to September 2005. Out of 369 patients with cluster headache treated with high-dose verapamil, 129 outpatients (161 of them men) had an EKG. Verapamil was initiated at 240 mg/day and increased by 80 mg every two weeks to a maximum daily dose of 960 mg. One patient was treated with 1,200 mg/day. The dose of verapamil was escalated until cluster headache was suppressed or side effects developed. EKGs were conducted in the clinic in 108 patients, and an additional 20 patients had EKGs elsewhere; no EKGs were conducted for 89 patients, which is contrary to current recommendations. Among reasons given for the lack of an EKG: patients or their service providers were reluctant to have frequent assessments (47 percent); 10 percent had EKGs before taking verapamil but declined EKG monitoring; 2 percent took verapamil for only two weeks; and 13 percent stopped taking the drug because of constipation, lethargy, chest pain, postural hypotension, or nonspecific malaise. One patient did not have EKG monitoring because he had a dual pacemaker prior to starting verapamil; and no reasons were available for why the remaining 32 patients did not have EKG monitoring. Of the 108 patients who had EKGs performed in the hospital, 13 patients had first-degree heart block (mean daily dose of verapamil, 578 mg); nine had other heart block (mean daily dose, 604 mg); 21 had total arrhythmias (mean daily dose, 567 mg); PR interval - a measure of the time it takes between the atrium contracting (P wave) and the ventricle contracting (QRS complex) - increased by <0.2 seconds in eight patients (mean daily dose, 653 mg); and 39 patients had bradycardia (mean daily dose, 659 mg). Verapamil was stopped in four of the patients with bradycardia. MONITORING RECOMMENDED Dr. Goadsby said that the study has several important implications. All patients with cluster headache treated with verapamil should have an EKG at baseline, for dose escalation, and then every six months for long-term maintenance. Despite these recommendations, a substantial number of patients failed to have EKG monitoring or EKGs were lost. Dr. Goadsby commented that EKG abnormalities are not dose-dependent and can occur in patients on doses as low as 240 mg/day, so it would be insufficient to just monitor patients on higher doses, he said. The study showed that EKG abnormalities can develop even in patients on a stable dose of verapamil. In one of our patients stabilized on 960 mg with no cardiac abnormalities, we saw dramatic EKG abnormalities 12 months later, Dr. Goadsby said. This problem may creep up in time. Since cluster headache is lifelong and doesn't go away, we recommend monitoring with EKG at intervals of six months, even in patients on stable doses. EKG monitoring is inexpensive and non-invasive, he said, and will keep a proportion of these patients on high-dose verapamil out of trouble. Although verapamil has the potential for causing life-threatening arrhythmias, use of this drug can revolutionize the lives of patients with cluster headache, Dr. Goadsby continued. It is excellent preventive therapy that can stop the occurrence of cluster headache. EXPERTS COMMENT Dr. Goadsby and colleagues are to be congratulated for publishing this study, said Fred Sheftell, MD, director of the New England Center for Headache in Stamford, CT, and president-elect of the American Headache Society. This is an important wake-up call to neurologists who use high-dose verapamil to treat cluster headache. Dr. Sheftell added that he and his colleagues at the New England Center for Headache routinely use EKG to monitor cluster headache patients on high-dose verapamil. When I get to doses higher than 720 mg/day, I involve a cardiologist for reassurance, Dr. Sheftell said. If EKG equipment is not available in the office of the doctor who is treating cluster headache, then the patient should at least be referred to his or her primary care doctor for EKG monitoring. The problem with such a referral is that cluster headache patients may not comply, Dr. Sheftell explained, because the pain is so severe that they are willing to court dangerous situations with use of medications. Therefore, we should insist that the EKG and the interpretation be sent to us to ensure safety. SLOW-RELEASE VERAPAMIL Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil, Dr. Sheftell noted. I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache, he said. I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil. Dr. Goadsby agreed that his clinical experience was similar. There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience, Dr. Sheftell commented. A little-known fact about verapamil is that it may inhibit sperm motility, Dr. Sheftell continued (Res Exper Med 1994;194:165-178). Men should be so advised if they are or will be considering having children, he noted. REFERENCES • Cohen AS, Matharu M, Goadsby PJ. Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy. Neurology 2007;69:668-675. [Fulltext Link] [CrossRef] • Anand RJ, Kanwar U, Sanyal N. Calcium-channel antagonist verapamil modulates human spermatozoal functions. Res Exper Med 1994;194:165-178.

John I spoke to Scott this afternoon - told him I'd hunt him down and cut off the protruding parts of his body if he didn't ask for any help I could give AND update me after his doctor's appt tomorrow! Fingers crossed for O2 for Scott please everyone! :)

Thanks Helen, your help is really appreciated.

With the O2 taking a couple of days to reach me, will they give me the Sumatriptan straight away?

I had another one around 30 mins after my call and once again the Rizatriptan didn't do anything.

Dammit Scott you insist on injectable imitrex, and the 02.
It is the front line abortives for CH.
all the best
Print this out and take it with you, dont take no for an answer.
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I hear what your saying, and I have printed it out to take with me today along with some stuff that Helen has advised on.

I must admit, I'm feeling kinda of uneasy going in there and just demanding these medications, I'm really unsure what the reaction of the gp will be.

What if they do say no? Then what do I do? Do I refuse to leave the surgery or something?
I can't get to see my Neuro until next Thursday and I need to get something sorted, another 2 bad ones last night and the Rizatriptan did nothing again....already done my days dose as well, so god knows what awaits me later....

Scott they CANNOT refuse you sumatriptan INJECTIONS

Imigran subcutaneous injections are the ONLY LICENSED TREATMENT FOR CH IN THE UK

Tell your doctor to look up cluster headaches in his BNF. If he refuses you the injections tell him you will be contacting the PCT (Primary Care Trust) He literally cannot refuse you the only licensed treatment there is. The PCT are bound by the NHS rules to over rule him if he does.

I'm home all day - it's not a problem if you need anything (although I am going out to fireworks this evening!!)

Hope that helps
Helen

Scott Lawrence wrote on Nov 4^th, 2008 at 7:20am:

Cheers guys, Is there any way to stop the swelling around the eye and temple? I've noticed that my right eye is now nearly always 'droopy' looking along with the corner of my mouth, almost looks like I've had a stroke or something...

Recently a friend, a migraine sufferer, loaned me essential oil for *aroma therapy*.  She said "doesn't cure but helps".  I said to myself, "yeah right....."  But it did help kinda sorta!  

It was "lavender and peppermint".  So it had a menthol-like soothing effect on the temple.  I use a Bengay type of a thing for muscle/joint aches, so I returned the essential oil because I got "something stronger".  If your sense of smell gets sensitive during the attack, those smelly things might make it worse though!

As far as Horner's syndrome.......  I don't think there's anything we can do to make it go away.  When it's real bad, I look at myself in the mirror, show it to my husband, to laugh at myself.......

Sorry you're having a rough time.  I've gone through episodes in college (no $$ for a doc or meds) with nothing but a handful of Tylenol and coffee, so I know what "perfect 10" feels like.  Hang in there.

Hi Scott,

Glad ur here and getting the help you need, Lelimey is great she helped me when i first joined as have most of the people who have offered support to you.

just to let u know i went to my GP and told him i needed 02 and the injectables, like urself i was on rizatriptan and it did nothing, i now have 02 and injectables but thanks to 02 i have never used one injection, as soon as i feel one start the 02 is jumped on and 20 mins later without probably going past a kip 2-3 im up and running again, i never want to go back to life without 02 and gearing myself up for the attack everday at the same time!!!

I hope 02 works for you and i presume Helen told you that 02 should be free from your GP.

Also here is far better than paying to go on Ouch UK, i dont know what i would of done without this site and the people on it !!

PFD and i hope you find some peace soon!!

I spoke to Scott earlier and he was very down. His GP is about as much use as a chocolate fireguard and I'm firing up broomstick one for a quick flight down to Mitcham if needs be.

Scott - I meant everything I said earlier on. PM me your address as we discussed, if I'm not about later it's because I've gone to fireworks with the kids but will be home after 9pm and that is fine to call if it's not too late for you. Anytime up to about 11pm ish is okay. Trust me, we WILL get this sorted okay? I don't make promises I won't keep and I need a nice GP hood ornament for my car LOL

Helen

I managed to get the injections, she gave me 2 doses?!?!
WTF am I supposed to do with that?
O2 she ruled out as apparently 'I would need to be shown how to use this, and she can't see it being of any use'
Should I have a hit, she very thoughtfully pointed out that I can call an ambulance to take me to A&E where they can give me O2....the last time I went to A&E about this just after I was diagnosed, I was told to go to the GP and ask for a codeine based painkiller.....

This woman was a total b***h, i broke down in tears in her office and she told me that there were people in the waiting room that needed her attention more I do, I asked her to call Helen, as Helen had asked me to, her reply was that she calls no-one, someone can call her if they choose, but doctors don't take advice from charities...

I feel a spot of GP education coming on...

Scott, I've just pm'd you. I'm so mad I could spit. I WILL be coming down to see your doctor if you want me too.

Oh how I wish I had a ten second zapper right now...

 Oh man effin  [smiley=bash.gif] doctors are the same every where, keep fighting talk to Helen if you were in the states I would be making calls for you but I dont know the process over there sorry  :'(, I had a shitty dr apt yesterday myself but I have pelnty abortives.  Now enough of that the injections they gave you are they stat dose or vials either way you can get more than two aborts out of them,  if its stat dose then read the imitrex tip link to the left.  Let me know if thers any thing I can do.    Phil

I've read the tip, and to be honest, having never done anything like this before, I'm going to stick to doing it normally for now and see how I get on.

I'll let you know how I get on with it later....or maybe by some miracle I'll never have another hit and never have to use it.....there's wishful thinking...

Remain calm Scott you are really off to a good start. The trex will give you 8 to 12 hours of relief. I suggest you get some rest after injecting.
The neuro will get you the 02 for sure , we will have you prepped and ready.
Trex rocks.
the bb

I need a nice GP hood ornament for my car LOL ;D ;D ;D

Thanks Helen. I am honored to be your friend.
the bb

Quote:

there were people in the waiting room that needed her attention more I do, I asked her to call Helen, as Helen had asked me to, her reply was that she calls no-one, someone can call her if they choose, but doctors don't take advice from charities...

O.K. Now I am hopping mad.  Charities?   CHARITIES>?????????


Helen,  This poor bloke needs an advocate badly.  This Doctor needs a rectal exam with a broomstick.  OMG....this kind of stuff just makes me want to jump on a plane.

I know.....the more I think about it, the madder I get.....and I have to go back there later.....

Anyways....good news....IMIGRAN INJECTIONS WORKED!!!!!!

Had a weird day yesterday, 3 or 4 not as painful attacks, for which I just rode out due to only having to doses...usually they are much stronger during the day....
Then the beast came out at around 1.30am, I panicked a bit, being slightly groggy and never injected before.
By 1.45.....gone.....ditto.....nothing.....You should have seen my smile....quickly followed by some z's
It decided it wanted to mess with me again this morning at 8.15 (35 mins ago), this time 10 mins was all it took and the gone......
I honestly can't believe I'm on here within a few hours of having a hit, let alone within the last 40 mins....

I'm going back down the docs later to get some more doses, do you guys think I should ask about the O2 again? I'm going to see a different GP than the one I saw yesterday, I don't think I could face her again after the was she made me feel.....

Your advice, as always is appreciated.....

  I am glad to see the injections worked, they work for most of us most of the time.  As far as apporoaching the doc I dont have much advise accept dont take NO for an answer,  I always try to be nice at first and then see how them react.  Dont go in there saying these are suicide headaches they will try to lock you in a padded room,  but make sure they give you the help you need.  The o2 I would continue to try to get,  most docs are willing to listen when you say you need o2 but they dont know how to perscribe it for a clusterhead.   Hang in there man,  did you try the Red Bull?          Phil

Heading out to the post office too LOL  ;)

I'm so glad it worked Scott, thats the start of some return of confidence for you. I'm really really happy here

Helen

PS If another doctor will listen then let me know!

Scott,

I had EXACTLY the same thing happen to me. I went to see my usual GP who had been very kind and good in getting to the bottom of what was going on, but he wasn't available. I had another GP lecture me about o2 and how NICE had just released some guidance on using o2 for short-term relief. He was so horrible, I just cried and cried.

I went back the next day to my nice GP and he did the work for me then and there.

Don't lose hope - is there more than one GP at our surgery? If so, see someone else. Alternatively, complain to the Practice Manager. Print off the info about o2 to the left and take it with you when you go. Don't be too afraid to stand up to them - not in a confrontational way, but in a positive way.

With Helen looking after you, you'll be all good. You're welcome to PM me if there's anything I can do.

Welcome to the fold.

Em
x

Scott,

Fing hell, my first reaction would be to tell ur GP she is a waste of space and go find another GP, print off the letters on ouch uk re oxygen as they are not allowed to refuse you them also, upon delivery they show you how to use them (not rocket science)!!!

My blood boils for you i hope you obtain a GP with a brain!!!!

PFD!!!!

Back in from the GP....

Firstly, apparently, and I quote "O2 is only prescribed by a Neurologist, and even then only after you have had blood tests" This was told to me by another GP as the Witch had a day off.....lucky for her....wish I could..

I kinda gave up asking about the O2, I was going nowhere fast and no-one was prepared to help.

Then I said that I needed more Imigran, seeing as I had none left, the receptionist said I could fill in a form and collect the stuff on Wednesday....?!?!?!?.....Needless to say, I absolutely lost the plot (The other 15/20 people in the waiting room can vouch for this)

I may have said things I shouldn't have, and I know it doesn't help, but they really peed me off this morning...

So I ask to speak to the practise manager...who has no medical experience?!?!? She basically spits out the same stuff as the other GP, I tell her I need a prescription now, and I need enough to last until I see the Neuro, she goes away and brings back a Prescription for 2 doses......WTF?!?!

By this point suicide had completely left my mind, Murder was all that I could think of.....

Eventually after much crying and being told that I wasn't a doctor and had no right to question them, I got a prescription for 5 days, so they will last until Tuesday, but I'm going to have to go back....

On the way out, the Practise Manager kindly pointed out that there were other practises in the area, and it might be a good idea to register with one of them, I pointed out that all I want is the right meds, in the right quantities, I understand there is no cure, but I am entitled to a relatively pain free existance, which I would undoubtedly get if they would listen to me. Once again she pointed out that I had no medical experience and she was not there to argue with me....

BTW, I printed off loads of stuff to take the first time round, she wouldn't even glance at it, she said that she already knows about Cluster Headaches........

Scott - I want to know who your local MP is and when his surgeries are. I also want to know the name and address of the GP practice and practice manager and your PCT.

I'm going to call later on to speak to you further but this farce is stopping.

Helen

Scott,

I assume that you are getting the auto injections.  Over here in the US imitrex comes in vials that you draw up yourself and it is much easier to split the dose.   Ask your doc if you can get the vials.  Your docttor sounds like a real dickhead.  Hang in there.  You will eventually find one  that understands.  Best of luck.

Regards,

Malcom



 

Go kick some ass Helen.  

Scott, I understand that you're in pain and how bad things can be. I really hope you'll get a better doctor soon! You feel so helpless when the ones who could really help us just spit at our faces, speaking when they shouldn't and not prescribing what they should...

However, I also think that you should do your utmost to get the O2, even if takes a visit to a private clinic. I can very well understand your need to use the Imitrex on a daily basis, but please don't do that for long, as it will probably result in you getting in "rebound hell", by which we mean a constant background headache and more severe CH attacks more often.

Hang in there, I'm wishing you luck!

- Rosa

Scott, i dont kow what to say other than if you need some Northern Monkeys to come down and knock those Southern Doctor fairies till they get some sense then just ask!!!! LOL [smiley=hammer.gif]

Go Helen help Scott as much as you can, i cant believe the way he is being treated!!!!

PFD TO ALL

Those that say humour is the best medicine ain't far wrong.....

You guys are really great, even the small messages of support manage to drag me from my depressed state.

One out of the blue for you guys, How long do your 'shadows' normally last?
I used to get them 5/10 minutes before a hit, in the place where the pain would be the worst, but since Monday-ish I'm getting them constantly, always there.....

Also, I'm pretty sure that the Amitriptyline is not doing anything at best, and maybe even increasing the frequency and severity. I want to stop taking them but the folks think I should stay on them until I see the Neuro next Thursday....any thoughts?

id say take what you can until you get some 02!
Some things may make a slight difference so wait till after ur appointment!!!

take care Scott

Scott sometimes over the counter painkillers like ibuprofen can help with shadows. I find caffeine, be it strong coffee or red bull help too. I detest the taste of red bull but I love how it helps.

You should get two envelopes from me tomorrow or the next day at the latest just so you know.

I've got your pm. I will make sure you have all the info you need for next thursday. If you would like me to come to see the neuro with you just say. I will come down if you want me to. (Pssst... someone tell him I only sacrifice newbie clusterheads on the 2nd thursday of each month 'k?!)

Hang in there, we're with you all the way

Helen

The angel that is LeLimey....

Thanks you so much for your offer, I may well take you up on it, I shall let you know asap...only if you promise not to hurt me.....lol

I'm fully stocked on Red Bull and Coffee, had another hit earlier, once again the Imigran did the job, I made it about 8 mins, within 10 mins I was back to normal again....

Quote:

The angel that is LeLimey....

[smiley=engel017.gif]

I told ya you would be glad you did.. [smiley=moonwiggle.gif]

Way to go Scott. Your a demon killer now.
all the best
the bb

Scott Lawrence wrote on Nov 6^th, 2008 at 12:24pm:

...only if you promise not to hurt me.....

Be careful of what you ask for ...

Besides, if she is in the right mood, when she hurts you, she hurts SO good!  Those thigh high boots and 5" heels, with the leather corset, and floggers ...

<sigh>

ClusterChuck wrote on Nov 6^th, 2008 at 7:44pm:

[quote author=4E7E72696942517C6A6F78737E781D0 link=1225715041/77#77 date=1225992278  Those thigh high boots and 5" heels, with the leather corset, and floggers ...

Damnit Chuck if I find you've been raiding my wardrobe again I'm going to tie you up and make you watch Jerry Springer re runs until 2015.. alternated with highlights from Senate sessions on dull days..

Be afraid...!

She-who-must-be-obeyed

Damn i knew helen was a minx but damn!!!

if you find a strange fella at ur door asking to be hurt dont be alarmed!!! lol!!!! ;)

Hi Scott

 Sorry to hear you've had such a rotten time with your "doctors" . . . and very glad you've got Helen backing you up.  It won't be long before she helps you get our beast under control . . . and you can get your 02 . . . a real miracle for those of us it works for (70%+).

 I'm a "head trauma" CH'er.  My attacks started after I nailed my noggin 1/01.  By the time my wife found this site for me (2/02), was having 6-8 attacks per day, sometimes 3-5 per night, most Kip 5-9, 20-45 min. and the occasional 1 1/2 - 2 hr horror . . . I was a basket-case and 13 months of mis-diagnosis, "normal" tests, MRI, CAT scans and non-working meds had me in a bad mental state.  As you already are aware, CH pain is so intense that you KNOW it must be life-threatening (tumor, impending stroke, etc.) . . . and this is complicated by the limited number of docs familiar with this beast of ours.

 After coming here (and shedding tears at the realization I was not alone), getting (and copying) the info to take to my doc . . . I finally was able to get some control over the beast.  For me, it was Verapamil and 02 that did the trick and that first PF day (in over a year) was WONDERFUL.

 I was a fairly heavy drinker, but didn't associate the headaches with alcohol. . .  quit 2/02.  Exhaust fumes and certain chemicals will also trigger an attack for me.

 I quit the Verapamil four years ago, and now rely on the water treatment (see "water X 3" . . . link on left) . . . it is NOT easy to do) and 02.  I keep 12 "E" tanks and have two regulators, one for the house and one I keep in my vehicle.  The key to 02 is to use at the first sign of attack . . . kill the bastard at the first sign of attack and save the Imigran for the hits the 02 doesn't work for (it takes a little practice, the correct flo-rate and mask).

 The best news is that you have Helen on your side and I pity (but not much) your idiot docs when she gets ahold of them.

 So glad you found the site . . . you WILL have more relief soon.

    Be Safe,   PFDANs

      Richard
 

Good luck tomorrow Scott - remember, you've got more back up than your neuro has LOL

Helen

Thanks Helen,

It's all printed off and ready to hand over....

Should I get him to fill in the HOOF form straight away?
I'm guessing that I should, but I don't know how to react is he comes out with 'I'll do it later' or something.....

Scott

No do it then!! Straight away - superglue the pen to his hand Scott!!!

don't forget the important stuff, tick the box for ambulatory oxygen so you can have small as well as large cylinders and also to write cluster headaches in the comments box!

All taken down....

Thanks once again!

Just to let you guys know....

My Neuro has sorted out the O2 via my GP, he was very good and listened.....which make a change for a doctor of mine.....

All being well should have it by Tuesday, so fingers crossed should be able to get back to work some time next week......

Never before have I been so excited/willing/craving to go back to  work.....I must need my head checked..... ;D

Heres to PF time for everyone!!!!!

good to hear your news scott, like you I had a result at the docs today aswell regarding o2. He filled out the form there and then and it should be with me on monday/tuesday. signed me off for another week though and have 2 go back next friday for lithium blood test result's!!!

The beast got me  good this morning k9 for 2 hrs ...it was hell...still at least the doc got to see the after affects of it.

pfd's my friends

Dan, we must be leading mirrored lives! I took a massive hit at about 11 this morning, I had mates round as well.....they hadn't seen me take a hit before, they wanted to call an ambulance and everything!! ;D
It was a strange one, literally came out of nowhere.....luckily once again the Imitrex did the job, ten minutes later I was clear.....
Does the lithium work?
The Neuro has put me on Topiramate for a month to see how I get on with them....hopefully they'll do something...
Fingers crossed!!!....

Dan and Scott - I have a question for you both... lithium and topiramate. Have either of your doctors suggested verapamil first?

Just wondering!! Bear with me please, I have a reason for asking.

Thanks Helen

I tried it when I was first diagnosed for a month, GP gave me 320mg a day I think....this was before the Neuro got involved

Scott,
About the  Verapamil.........How long did you use it? It takes some time to load into your system, and it has it's own "little perks"  ::).........also, did your Dr suggest titrating..........320 is possibly not enough for you.......and the daily delivery of the 320 dosage......in otherwords, the Vera might work, if it 's tweaked a

bit!
Sometimes, the Vera is used in conjunction with the Lith, but Verapamil is a first-line as a rule.
Glad to hear you got  your script for 02. I hope it works well for you as it has for so many here!
PF wishes to you,
Cathi

hi Scott sorry to hear you have CH, but glad you seem to be on the right track now!!!

You mentioned that you have tried Verapamil, do you know if it was the slow release or modified release version you were on!!

i do have good reasons for asking this.

Also OUCH UK has been mentioned, and i can understand your reasons for not wanting to join, but it costs nothing to phone their helpline, all you need to do is leave your name, a message and a contact no (preferrably landline) and someone will call you back!!

i know you have had some good advice and support from Helen (my adopted big sis), but if you feel the need for some extra support please don't hesitate to phone them the number is

01646 651 979

the helpliners are all sufferers or supporters and are there to help in any way they can

good luck and i hope you get things under control soon

Sandra xx

What a story, Scott. This thing brings out the best/worst in clusterheads.....It is a horror. I wanted to contribute a technique that I used for so long. The price is right anyway:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Scott, looks like you have the CH army firmly behind you.  You're in excellent hands here.

Do you have a wife/girlfriend/boyfriend/significant other to help you out?

I'm a supporter of 17 years and it breaks my heart to think of you going through this alone.  I remember when we went through this nightmare before getting O2 on demand and the proper preventatives.

My husband was episodic for years and then went chronic for 2 eighteen month periods.  Currently he is out of cycle (and aren't we just THRILLED with that??!!). DH is currently on hiatus from CH.com, and he swears by Lithium.  He was up to 1200mg a day and is currently down to 900mg a day.  It really evens him out and we notice no side-effects other than a mild lethargy (and who knows, that may just be that's he's approaching 50!??).  He also has O2 available all the time as an abortive.  We have an M tank in the living room at all times (and currently decorated for the Holidays).

 I hope you can get back to relative normal in your life.  We're here for you in more ways than you know.  PM me if you need anymore info about lithium and I'll put you in touch with my DH, Brew.

Best of luck.

Hello all,

Sorry it's been a while.....Wow, where do I start?

Mrs Mac/Cathi Pierce - I can't remember what type of Verapamil I was on.....sorry!

Charlie - I have printed out your instructions, I'll be sure to give it a go, anything that may help is worth trying......but read on first.....

Mosaicwench - I am single, I honestly don't think I would have been great company for a lady for the last few months.....unless she was into watching men writhing around on the bathroom floor in tears.....

However.....I have been painfree for 6 days!!!! woohoo!!!! I started taking Topamax at 25mg daily, about 7/10 days before hand, but I noticed a change in the hits a couple of days before that. Had really bad side effects for the first week, not so much the memory loss that everyone told me about but my hands REALLY hurt, the cramps and pins and needles were awful but stopped as abruptly as they started. 5 days ago I doubled my dosage to 50mg daily. Still feeling good. I'm going to into work tomorrow  :) and maybe mosaicwench, go out at the weekend and see if I can't meet someone  ;) lol
Damn it feels good to feel 'normal' again....

So that's why you guys haven't heard from me, I've had so much to do!

Just a random question, does anyone suffer weight loss when they are in a cluster period?
I have lost about 2.5 stone, that's around 35 pound to those the other side of the pond, Neuro says it's probably just got I felt so crap I didn't eat that much, kinda makes me think though what will happen when (if?) the next bout comes.....if I lose this much again I'll turn transparent.....

Wishing you all the very best and painfree times!!!!

x

Scott,

 Did you get your 02?  Tried it yet?

  Richard

Just an update.

Been diagnosed with depression? had a few good days, followed by what can only be described as sheer hell, I swear if I had a gun.

O2 eventually turned up today, yes today, 08/12/08, and guess what, turned up all wrong, wrong mask, wrong regulator, and the tiniest cannister I have ever seen in my life, I laughed when the guy turned up, then cried, then told him to fuck off with all the gear.

I'm not sure if you guys are brave or stupid, don't get me wrong, I'm not having a go at you, I just don't know if I want to live with this shit for the rest of my life

Depression is part of it Scott. I have to live with this shit, it is a part of me. I dont want it but I have it. I hate this condition. You will get the 02 straightened out. You have to keep eating on them like eating an elephant......one bite at a time. You have no choice but to fight.
Call the neuro, someone is not understanding the 02 therapy. That is not uncommon. High flow 02 for ch is uncommon. Makes sense that people dont understand. Keep after them.
all the best
the bb

Please please please don't let the depression beast get you!  When you feel it, just keep telling yourself that it is a chemical reaction in your brain, and when it balances out again, you will not feel this way.  I've been having terrible lows, too- just do whatever you have to to push on through!  And let us know how you're doing!

PS  where the hell did you get that avatar?!? it's HYSTERICAL!!!  ;D

Hello Scott!!!

I'm new to the site to but not to CH.  I'm sorry you are not getting any help from your neuro.  Keep at him.  Don't ever let any doctor tell you that they can't help you.  That's what they pay the big bucks for!!!  If your doc insists he can't help, find someone else or educate him yourself.  Bring in a headache diary and all the information you find on the internet.  

As for the Red Bull, I do find it knocks the shadows out and really helps with the O2.  On good days, I slam 1/2 a can before I start the O2 and within 5 minutes on O2, the CH is gone.  I then down the other 1/2 of the can.

I, too, get very hot at the start of a bad attack.  It feels like I am a turkey roasting in the oven.  Ice helps.  I also get a bad knot in my neck at the area where the neck and the head meet.  When my CH is subsiding, I get very cold, it can take me upto 20 minutes to warm up.

I hope you are doing better!!!

Laura

Scott Lawrence wrote on Dec 8^th, 2008 at 2:12pm:

Just an update. Been diagnosed with depression? had a few good days, followed by what can only be described as sheer hell, I swear if I had a gun. O2 eventually turned up today, yes today, 08/12/08, and guess what, turned up all wrong, wrong mask, wrong regulator, and the tiniest cannister I have ever seen in my life, I laughed when the guy turned up, then cried, then told him to fuck off with all the gear. I'm not sure if you guys are brave or stupid, don't get me wrong, I'm not having a go at you, I just don't know if I want to live with this shit for the rest of my life

scott please give the UK Helpline a call, i promise you they can help

01646 651 979

or pm  me your number and i will personally phone you back!!!

don't let this get you down, there is help out there!!!!!!

Sandra

Scott,

As you have read by now your not alone even though it may feel like it YOU ARE NOT ALONE, everyone on here has been through or gone through similar incidents and at some point have all felt that way regarding CH and the way it inpacts on our lives, i know from my own experience nothing is ever as bad as the begining and finding the help, meds, support you need but once one comes into place everything soon follows some sooner than others.

Good Luck PFD to all and keep fighting!!!

SI

Right.....feeling slightly better today.....sorry if I went off on one the other day....I feel like a bit of an ass.....

O2 now sorted, 3 cannisters delivered. All correct. 12 litres per minute, 10/15 mins, all clear....although might need another mask, the one I've got is a bit crap....talk about flimsy....I think they got it from toys r us....

Topamax now at 100mg daily, no more 'nasty' side effects eg. pins and needles etc, getting a little forgetful, some may say stupid.....some may say I have always been like it.....

Melatonin ordered, should arrive 2/3 days, going to try 5mg 20 mins before bed for 1 week and see how I get on.

GP wants me to go on anti-depressants, that ain't happening.....

I think most of my mood swings are due to the amount of time I'm spending on my own, and therefore spending far too much time thinking bout these bloody hits......therefore I don't see the point of sticking more chemicals in more my body.....do I make sense?

Sandra, thanks for the offer, but now is not a good time for me to be speaking to people, Christmas is a really hard time for me without all this, I really do just need to be on my own until after all the festivities...

Thanks for all your help and support guys/girls.

I could really kill a beer..... :'(

Scott no worries, but the offer will still stand should you ever need it!!

10 - 15 mins on the oxygen may not be long enough to keep your attacks from coming back!!

the usual advice is to stay on it full blast for 10 mins then reduce (if you want) and stay on a further 10 mins, then when the attack has gone, stay on another 10 mins, and hopefully you shouldn't get any rebound attacks!!!

what kind of mask are you using???  it should be a non rebreather!!!

good luck

Sandra xxx

Its is a non-rebreather, it has a bag hanging from it....
It's just like....well really crap....just really flimsy, I have to cup it to my face as it doesn't 'grip to it, if you know what I mean, it's almost like the material is too thin/flexible around the edges, I'm not moaning though, I haven't had to inject all day!!!!! :-)

Let me get this right, when I feel the beast coming on, whack the mask on, wait for the pain to go, which is about 10 mins, then leave it on another 10 mins? is that right?

x

you should aim to be on the O2 for about 25-30 mins!!

as i said, get on the O2 asap  after the attack starts, 10 mins will prob take away the severe pain, then another 10 for the attack to completely go, and once it's gone another 5 - 10 mins should kill it completely and stop any rebounds!!

but, Scott, after you have been using it a few times you should be able to work out what's the best way for you!!!

any more probs give me your no and i'll phone you and talk you through it!!!!

sandra xx

I honestly found that after 10/15 minutes I had no pain at all.....?????
Then again the pain hadn't hit full whack when I started.
I get a sensation in the back of my throat/neck and a really weird 'popping' like thing going on behind my right eye, as soon as I got that, I put the mask on and hit it., the pain then started to come, but never came on full whack, but after 10/15 mins, and after getting a slight head rush, it was all gone....

Next time though, I'll keep it on for 20mins in total and see how I get on.

Sandra, no matter how hard you try....your not getting my number!!!!!!!  lol  ;)  I'll gladly pass it on after the next few tough weeks have passed though. Thanks once again!

Scott
x

no probs Scott!!!

honestly I'm not a stalker!!!  :-[ :D ::)

just want to make sure you are using the O2 the best way to help you mate!!!

good luck

Sandra xx

If you start getting headaches within 10-30 minutes of quitting the 02, try slamming an energy drink as soon as you start the 02. That works for many to prevent the "come backers!" Glad to hear oxygen's working for you, it's a beautiful thing aint it????   ;)

Joe

Scott Lawrence wrote on Dec 10^th, 2008 at 4:55pm:

I honestly found that after 10/15 minutes I had no pain at all.....????? Then again the pain hadn't hit full whack when I started. I get a sensation in the back of my throat/neck and a really weird 'popping' like thing going on behind my right eye, as soon as I got that, I put the mask on and hit it., the pain then started to come, but never came on full whack, but after 10/15 mins, and after getting a slight head rush, it was all gone....

You have no idea how it warms my heart to hear of success with O2.

My DH (Brewcrew) gets great relief from it and it's such an easy relatively side-effect-free way to abort these dastardly hits.

Glad to hear you're one of the lucky ones!!   [smiley=thumbup.gif] [smiley=thumbup.gif]

Hi Scott,

Ive been using 02 since Feb and Sandra is right, the more you use it the more you are able to judge what is best for you.
My main point is that if i feel one starting jump on the 02 immediately after that i sit with the mask on for at least 15 mins (timed) if i still have some pain i stay on for a further 5mins and usually im pain free. Worst thing to do is not to jump on the 02 when you first feel the beast start, if i do that i can be on longer and it rises up the kip scale.

Good Luck Scott

PFD to all!!

Hey Scott,

Glad to see the o2 is working for you. My mask was really flimsy too and I had to put tape over the holes on the sides, but if it works, it works right?

Keep smiling. This damn thing hasn't killed any of us yet and it's not going to either. We win by staying strong.

Em
x

My old man always drank coffee in the afternoon on a hot summer day.  I never understood that.  Later, I learned that if you drink a hot liquid your body has to cool it down, thus cooling your body.  Much the same that they say not to drink a cold liquid when you are hot because your body will heat up to warm the drink to body temperature.  

When I was in boot camp we drank room temperature to warm water in the summer in South Carolina.  (Good ol' Parris Island)  It seemed to hydrate and cool better than cold water.  I would assume that drinking warm or hot coffee for you would provide more of a cooling effect than you would normally think.

Bud

Update...

O2 still kinda working, took 2 hits over the weekend it didn't touch and was forced to inject, finding it hard at night to get back to sleep after 20 mins with the mask on......any ideas?

Still not going out though, managing to go to work and back, only because I have tanks at both places, manage to go shops and stuff to get food early Sat before gets busy, find being around people stresses me out which in turn bring one on.....again any ideas??

Feel like I'm living just for the sake of living if you know what I mean, don't mean to bitch, but spend my time either at work or in my flat....not exactly a life....could it be that the paranoia of having an attack while out is bringing them on while out? If so, any ideas???

Thanks people.

Just wanted to say thanks for all your help.

I've decided that this isn't for me.

Your braveness amazes me and I applaud you for it, but please do not judge, what fits one, doesn't fit another.

New Head Required...  I'm Bluedog, got ch's for the first time within weeks of when you did...  i am praying that the last 3 days will continue with no ch's and that the shadow's i've gotten in the mornings will go away also.  Dude... over 1700 times there have been people at this site reading this thread and I have been following your story also.  I'm sorry you haven't gotten the relief you desire as of yet.  I have taken to solitude myself during the past couple of months, it DOES make you anxious to know you could be somewhere without your abortive or medications.  I just wanted to comment on your last post and remind you of the quote you have in your profile...

“Understanding is the first step to acceptance, and only with acceptance can there be recovery.” “I enjoy convalescence. It is the part that makes the illness worth while.”

Don't let the beast control your life...  I am trying not to either and it is one of the most difficult battles I have had to endure.  I actually quit my job during this battle and have to find a new one real soon because I'm completely broke now.  I am just hoping that you don't give up on this site because it really does help to sound off when you need to and to receive input from others who share the pain.  No harm in lurking and chiming in when you want to.... just know that everyone here including myself is wishing you the best and we hope that you hang out a long time...  there's a place for all of us here.

Best of Luck to you for PFDAN's.

Bluedog