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        Cluster Headache Help and Support >> Cluster Headache Specific >> Any Help appreciated (new to board not to ch)
        
(Message started by: CraigA27 on Nov 27^th, 2006, 6:20am)

Title: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 27^th, 2006, 6:20am

Hi,

First ill tell you a little about myself. I have suffered from ch for 7 years, have only known they were ch for 2 though.

My cycles are generally for 4-5 weeks every year starting any where between the end of july and the end of august. Generally I have 4 attacks a day, 3 during the night (in a space of about 8hrs) and one around 11am.

They normally last between 45 mins and 75mins and vary in degrees of pain. The worst one seems to be the 3rd one that wakes me from my sleep in the night but I think the fact that i am exhausted from the other two contributes to this and is the reason why i end up waking the rest of the house from running into the wall. ;;D

I first realised i had ch 2 years ago i spent a lot of time researching and reading on the internet. I had kept a diary of attacks from the previous year and took the diary along with all the information i could find on CH to the doctors.

The doc agreed with what i thought andprescribed imigram nasal sprays which didnt work. strong headache tablets etc. After going back and forth a few times and a lot of pressure from me he finally prescirbed me imigram injections. (Although he was constantly telling me how much they cost everytime i went and would only give me 4 at a time)

Now the injections were great they killed my ch withing 10-15 minutes but they came with a terrible side effect for me.... They made me fall asleep after they had killed the CH. Not exactly ideal for someone whos main trigger appears to be sleeping and alcohol and the fact i could only use 2 a day (even using the imigram tip i still had the problem of falling asleep and ended up in a vicious circle of having 4-6 attacks a day)

Anyway last year i tried kudzu. Istarted taking them when i was 2 and a half weeks into my cycle and after 3-4 days i was pf. I thought great i found something that works for me no more headaches.....

Fast forward to this year. End of july i figured that my cycle would start soon as it always does and has done for 7 years so if i started taking the kudzu from then until the start of october.

Got to the end of october i was ecstaic iw as sorted or so i thought......

Now i fast forward to last thursday(23/11). Im watching a film on the setee with my partner and bang one of the worst CH i have ever had. No 5 min warning that it was coming no nothing. 1 min nothing next minute agony. Started the kudzu again been trying redbull coffee etc etc. These are some of the worst attacks i have had i 7 years. They have me on the floor crying like a baby. So since last thursday i have had a total of about 15 attacks

The only way i can deal with these is by sitting them out and ice cold water to take a bit of the edge off. (could try injection but im still on the kudzu too and read its not recommended to take both and i got the whole sllepp headbang problem again anyway and 2 hits)

Now my hopes that i had found a remedy for myself shattered and the fact that these are the worst attacks i have ever suffered and that i have had about 5hrs sleep in 4 days has left me feeling a little worse for wear shall we say.

My partner last year had done a lot of research on oxygen treatment for me but because we thought the kudzu was working there did not seem to be any reason to follow it up... OH how wrong i was!!!!

So first thing this morning got a doctors appointment to try and get him to give me oxygen as i am at my wits end. No i know there is no guarantee that oxygen will work and there are other thing i could try but it seems oxygen is effective in a lot of people. I figured best to try and get him to give me the one that seems to be most effective first before having to try more pills and suffering longer.

So got to the doctors explained my situation that this year they were really bad i didnt know how much i could take and explained my problem with the imigram.

I literally begged him to let me try oxygen as he was very reluctant. He wanted to give me beta blockers verapil etc etc. I tried to plead with him to let me try o2 and eventually he basically started coming round to the idea.
He said the problem with o2 was the flow rate to give etc etc. Now i had printed off a lot of info from this site and others about o2 and CH and gave that all to him.
His reluctance seemed to return pretty quik when he saw the suggested flowrate (10-12 lpm) and started telling me that it was too much and its normally 2!!!!! (Contary to everything i had read)

Anyway i pleaded my case again and he decided to call the hospitals neurology dept and speak to a consutant (that wasnt there) but was told would ring the doctor back this afternoon.So the appointment ended with the doctor telling me that he would talk to the neurologist on the telephone if he could as it would save me the 3-4 mth wait as an outpatient and get back to me this afternoon with the neurologists recommendations.

Im really concerned that the doctor wont tell him the entire picture. (the effect of the imigram on me, the intensity this year etc etc) as he only seemed to write 1 sentence in the whole converstaion and will come back to me and say try these pills or these pills which tobe honest i dont know if i can take it if they dont work.

I know there are people worse of then me especially chronic sufferers you must be a hell of a lot stronger than me.Im just looking for any advice or suggestions or anything you can offer[smiley=laugh.gif]

Thanks

Title: Re: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 27^th, 2006, 6:26am

Thought i better apologise for the length didnt realise i went on for that long.

Sorry

Title: Re: Any Help appreciated (new to board not to ch)
Post by Shedz on Nov 27^th, 2006, 6:33am

you got nothin to be sorry about chap,we all here for the same reason. Hang in there,as I found out yesterday,help willsoon be on its way :)

Title: Re: Any Help appreciated (new to board not to ch)
Post by Bob_Johnson on Nov 27^th, 2006, 6:54am

While I appeciate that the focus of your message is on abortive meds--given the severe attacks--are you using, or have you tried, preventive meds?

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 27^th, 2006, 7:08am

on 11/27/06 at 06:54:33, Bob_Johnson wrote:

When i saw the doctor today he did mention verapil to me (not sure how you spell it). I did kind of give him the brush of on it probably wrongly.

Maybe it is something i should talk to him about. I probably wrongly stopped him dead in his tracks when he mentioned more pills to me this morning i guess i just didnt want to hear that and wanted him to give me a none existent magic cure. (I was exhausted and was going into docs on the back of a bad attack).

Ill try to be calm when i go see him again i think my worry is that im getting more tablets that i dont think will work (defeatest attitude i know) and i have to put up with more attacks with nothing working and the fact that it always seems to boil down to costs with some doctors.

Thanks for the info bob gonna print it off and have a read myself then take it with me to the docs next time i go and actually listen to him before jumping down his throat :-)

Title: Re: Any Help appreciated (new to board not to ch)
Post by LeLimey on Nov 27^th, 2006, 7:52am

Hi Craig, I'm in Bingham which is the other end of the Cloughie Way from you ;;D I won't hold it against you that you're from Derby though eh?!
Right first of all lets sort your doctor out.
He needs to fill in a HOOF form (Home Oxygen Order Form) which will mean you get O2 delievered straight to your house. The two important bits are to write "Cluster Headaches" on it and also to tick the box for ambulatory Oxygen. You're in an Air Products region as am I and I was there in October training them in the needs of ch'ers so I can guarantee they will know just what to do with you!
They supply masks along with cylinders and I would suggest you give them a ring 24 hours after your doctor has faxed the HOOF to them so that we get this sorted quickly. Their number is 0800 373 580. Forms can get not faxed, can be filled in incorrectly etc so i's imperative really to keep close tabs on it to ensure you get it ASAP.
From Hoof to first delivery can take as little as three days if all goes to plan so lets make sure it does for you!
Incidentally Imigran INJECTIONS are the only licensed treatment for CH and all he is doing by prescribing 4 at a time is bumping up your prescription costs. Do you have a Pre Payment
Prescription Certificate? If not I'd highly recommend you get one. You can buy them for 3 months or a year so depending on any other prescriptions and how long your cycle lasts you can work out which is better for you.
The website if you want to read more is
http://www.ppa.org.uk/ppa/ppc_intro.htm You can buy them online or at the post office too.

A Website you can show your doctor is the OUCH UK Doctor Info site
http://gpinfo.ouchuk.org/

Its been written largely by Professor Peter Goadsby who is the UK's foremost authority on CH and one of the leading experts in the world. I'd like to point out what he has to say about both triptans for you.

Quote:

Subcutaneous sumatriptan (6mg) is the drug of choice in abortive treatment of a cluster attack. It has a rapid effect and high response rate. In CH, unlike migraine, subcutaneous sumatriptan can be prescribed at a frequency of twice daily, on a long-term basis if necessary, without risk of tachyphylaxis or rebound.

However, in this era of a cost-conscious NHS, some practitioners are reluctant to prescribe this relatively expensive drug. We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons. Although nasal sumatriptan is often used, it is considerably less efficacious than the subcutaneous formulation and there are no controlled studies to support its use.

Thought you might find that interesting! Let us know how you get on and if you need any more help
Helen

Title: Re: Any Help appreciated (new to board not to ch)
Post by LeLimey on Nov 27^th, 2006, 7:58am

Craig Verapamil is a preventative as opposed to an abortive which Imi and O2 are. They work at aborting hits, verapamil works at trying to prevent them.
Its a blood pressure med, a calcium channel blocker and has to be built up in your system for which reason its often started with a course of Prednisolone, a steroid at a dose of 80-100mg. This should knock your hits dead but as you taper down off it (and you have to as Pred is a nasty evil wicked drug if you're on it for too long) the hits WILL return. This is where the verapamil will have been building up in your system as you increase the dose and will hopefully take over blocking the majority of your hits. Two important things to remember are you must have an ECG at every increase of verapamil and you shouldn't drink or eat grapefruit or grapefruit juice as they enhance the effect of verap as can Red Bull and other high energy drinks so if you have read about those, use with caution if using verap.
Also bear in mind that while a few people get results at lower quantities the average "dose" for verap is about 480MG per day with some poeple needing to go as high as 960MG. Its all very individual, there is no right or wrong its just a case of persevering until you find the right treatment for you.
Hope it helps!
Helen

Title: Re: Any Help appreciated (new to board not to ch)
Post by davyp on Nov 27^th, 2006, 8:39am

I can only agree with what Helen says (coz she would hurt me if i didn't lol)
She is an invaluable source of knowledge and support and will help you out as much as she can.
Have a good read you will find no end of good advice that will help you out.

Pfdan

Dape :)

Title: Re: Any Help appreciated (new to board not to ch)
Post by UN solved on Nov 27^th, 2006, 8:49am

I agree ... Helen is a walking, talking, (and typing) book of cluster knowledge :)

Make sure you have a doc prescribe the meds and amounts. Don't just try it on your own. Steroids, Verapamil, and most of the other drugs we try can be very dangerous or even fatal if not used correctly. :o

PF Wishes

UNsolved

Title: Re: Any Help appreciated (new to board not to ch)
Post by sandie99 on Nov 27^th, 2006, 11:50am

Warm welcome, Craig! :)

I'm so sorry that the beast is giving you hard time right now. I do hope that this visit is a short one and that you'll be PF soon.

Best wishes & PFdays,
Sanna

Title: Re: Any Help appreciated (new to board not to ch)
Post by Richr8 on Nov 27^th, 2006, 12:19pm

Hi Craig and welcome. Sory to hear you are suffering so. Please read all of the info you find here:

http://www.brightok.net/~mnjday/chtherapy.pdf

and find a Neuro that will work with you in finding some relief. And please stay after the Oxygen. It is a miracle worker for me, atleast while not in high cycle.

Title: Re: Any Help appreciated (new to board not to ch)
Post by thebbz on Nov 27^th, 2006, 2:04pm

Craig,
Listen to Helen as she is so correct. You mentioned the doc was talking to the neuro on the phone and you were concerned that he would not relay the correct information. You should be. I am of the thinking that you and your doc diagnosing CH is a step in the right direction, however the proper diagnosis demands a referral to the neuro yourself and the neuro doing their job. Have you had an MRI? This is critical to rule out other causes. You may want to consider going through some of the standard drug therapies before proceeding to the alternatives. Doctors use beta blockers as a prevent and for some they work. It just seems to me you skipped some important steps. You probably jumped over them in pain :P Just a couple of points to think about. Get to the neuro yourself. Get a proper diagnosis. Try some of the lesser invasive drug therapies before jumping to alternatives and really bad drugs with really bad side effects. And finally listen to Helen. 02,02,02
all the best
jb

Title: Re: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 27^th, 2006, 3:41pm

Well just coming off the back of another bad one and i have an answer machine messge from the doc.

Basically he has spoken to the neurologist ( or consultant in the neorology dept as he put it) and below is nearly EXACTLY what he said in the message about what the recommendations were.

"He has recomended that we change the formulation of the imigram to tablets that melt in your mouth or the nasal spray. If that does not work then high dose asprin"

Now the nasal spray i have tried HE prescribed it to me 2 years ago and it did not work. The tablets i have read are too slow to get in the system and he AGREED with me when he gave me the injections initially that the tablets may be too slow and PLEASE tell me he seriously didnt just recommend me ASPRIN!!!!

Maybe i am just thick and this is actually good news and i dont understand what he is offering but to me it seems i have now taken a step back....

Anyway he wants me to go into tomorrow to discuss the 2 "options" with him.

On a side note how do i go about getting an appointment with a neuro my doctor hasnt even mentioned me seeing one. Do i just got to the hospital??? The doctor did mention today that there would be a 3-4 month wait as an out-patient

Thanks again all i know im ranting a bit now :'(

Title: Re: Any Help appreciated (new to board not to ch)
Post by LeLimey on Nov 27^th, 2006, 3:51pm

Craig first of all whatever sodding neuro he spoke to obviously wasn't a headache specialist neuro. Neurology is a big field and one specialising in MS for instance is going o be about as much use to you as a chocolate fireguard.

When you see him tomorrow take the OUCH url with you and show him what it says there.

DEMAND to see a HEADACHE SPECIALIST neuro. If there isn't one in Derby, and from recent memory I don't think there is then he has to refer you out of region. Its tough if he doesn't like this, the fact remains that government guidelines state you have the right to see someone who specialises in your condition. If you want to go to Queens Medical Centre in Nottingham I would highly recommend Dr Nicos Evangelou who is my own neuro.

Tell him you've considered his options and you'll go with what the BNF states. That'll fox him ;)

Just for the record, in a hit the blood vessels on the affacted side of your head will swell by up to 20 times their normal size. This means the ONLY things that will abort that pain are Vaso-Constrictors. High dose Aspirin, High dose para-bloody-cetamol and even high dose flippin' morphine are going to be about as much use as a packet of smarties because it doesn't matter how high the dose, they won't constrict those blood vessels and therefore will not help with the pain.

We - I will help you all we can with this I promise. If he won't prescribe O2 and Imigran injections and won't refer you to a HEADACHE SPECIALIST NEURO!!! tomorrow come straight back here and I'll tell you how to go to the PCT. Tell him that is your intention too. Stress every single time you mention the word neuro that you want the HA specialist, you are worth more than this (even if you ARE from Derby!) and I'm getting on my high horse now - I'm on a mission to get you the right treatment ;)
Vent all you like, it helps doesn't it?!
Helen the destroyer ;;D

Title: Re: Any Help appreciated (new to board not to ch)
Post by thebbz on Nov 27^th, 2006, 3:59pm

;;D
Sheesh...rant away.
In the US you have an initial diagnosis done with the General Practitioner, the word general is important here.
At this point the GP has no reason to refer you to a specialist. This is the neurologist. Only a neurologist can make a diagnosis of CH that the insurance will aknowledge with no questions. A proper diagnosis from the neurologist carries a lot of weight.
You have a right to demand a referral to the neuro. And should in my opinion. Again this is in the US.
Most clusterheads get the injectors for the imitrex...instant success for most.
Beg for 02. Insist on a referral to the neurologist.
all the besthttp://www.med-owl.com/clusterheadaches/tiki-index.php?page=HomePage
jb
Edit: and what Helen said [smiley=laugh.gif]

Title: Re: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 27^th, 2006, 4:59pm

on 11/27/06 at 15:51:59, LeLimey wrote:

Thanks for the info helen.

I actually not from derby im actually from leeds lived in derby about 4 years if that makes you feel better ;;D

I have printed the "Update on therapies for cluster headaches" that someone kindly posted earlier and i am going to take that with me tomorrow.

I am tempted to book an appointment with one of the other 3 doctors there but havent decided yet as i want to see if i can resist throwing him out of the window when he prescribes me 16 anadin extra......

Also printed off a few things about oxygen and some other stuff from the ouch website he is gonna need a filing cabinet for all the stuuf i give him.

Think my plan is to bug him everyday until i make progress . He will get so sick of me that he will want to give me his first born just to stay away from him [smiley=laugh.gif]

In all seriousness thanks to all that replied and all the advice that i will take with me tomorrow. I will update tomorrow with whatever happens

Take care

Title: Re: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 28^th, 2006, 5:47am

Well a big thank you to all the advice and help given especially to you helen.

Today was a lot better day. Went to see the doc he started with his using high dose asprin until i used what helen said about need a vaso constrictor.

He then proceeded to tell me how he suffered from MIGRAINES and 2 asprin stopped his from happening. You can imagine my anger at this. He then told me how he suffered the same as me although his was only for 48hrs and not 4 weeks.

Well pardon the french but now i was just pissed off so i started reeling off all the things i had read (not even really understanding what i was saying) and dropped hints about BNF and PCT (thank you helen). Told him i thought it was about time i saw a neurologist who specialised in headaches

After that his whole attitude changed. I sat there while he put me into the system gave me all the details told me i was on the system and just needed to ring queens medical give then the password he had given me and book an appointment.

I couldnt believe it. He then gave me a prescription for zolmitriptan that melt on the tongue.

The reason he gave me these is i have had problems with the injections. They make me fall asleep 15 minutes after taking (I always have an attack after falling asleep), making me feel very ill, dizzy, and irritable and gave me bad chest pains like my chest was been crushed.

And at the end he even mentioned oxygen if these dont work (I know from reading around that these tablets dont have great reviews for working great but they may for me and if they dont at least i can say i tried them)

Actually feel at last that i am making some progress now up the treatment ladder so im relativly happy just gonna ring and book my appointment now

Thanks again all will keep updating

Title: Re: Any Help appreciated (new to board not to ch)
Post by LeLimey on Nov 28^th, 2006, 6:04am

I've created a monster ;;D

Woo Hoo Craig thats brilliant, you never know, we may be seeing Dr E on the same day yet!

I'm glad you're sorted, if you have had a problem with the injections you may want to consider the Zomig nasal sprays (I think you meant maxalt melts by the way which some people have had success with so don't be disheartened) The beauty of the nasal sprays is they have a long half life of up to twelve hours which means they'll protect you from further hits for up to that long. Two years ago at the OUCH UK annual conference Professor Goadsby stated that although most triptans were limited to two doses per day there was evidence and trials to suggest that up to three Zomig could be used in one day. If the Maxalt don't work get back to the doc's and ask for Zomig Nasal.

Doesn't it make you feel better when you empower yourself and take charge?!

One last thing, you want the O2 anyway, its centrally funded so it doesn't come directly out of his surgeries pocket (he'll like that bit!) and you can use it while waiting for the triptans to kick in and also for hits when you've used up your triptans (Personally it works so well for me that its what I use FIRST)

Another point if he ever brings up costs again is that surgeries with high cost patients can claim more budget, its more forms which is probably why the doctor prefers to be tight on your prescriptions but don't let him guilt you out of what you need!

Helen

Title: Re: Any Help appreciated (new to board not to ch)
Post by sailpappy on Nov 28^th, 2006, 6:04am

;;D ;;D Even in pain you guys have a cute accent! My Step Daughter(Helen) is from the London area, Just tickles me to see it even comes through in your text also!
Pappy

Title: Re: Any Help appreciated (new to board not to ch)
Post by CraigA27 on Nov 28^th, 2006, 6:18am

on 11/28/06 at 06:04:41, LeLimey wrote:

I'm glad you're sorted, if you have had a problem with the injections you may want to consider the Zomig nasal sprays (I think you meant maxalt melts by the way which some people have had success with so don't be disheartened) The beauty of the nasal sprays is they have a long half life of up to twelve hours which means they'll protect you from further hits for up to that long. Two years ago at the OUCH UK annual conference Professor Goadsby stated that although most triptans were limited to two doses per day there was evidence and trials to suggest that up to three Zomig could be used in one day. If the Maxalt don't work get back to the doc's and ask for Zomig Nasal.

Helen

The zolmitripan tablets he has given me are called zomigoro (Zomig Rapimelt) on the box. Ill give them a try i may hit lucky.

I tried a nasal spray the first year i went to see him but in all honest i cant remember what it was called i think it was the imigram nasal spray on the bottle but not enirely sure. I didnt seem to get any relief from it. So he then had me on the injections (and dam was it hard work to get him to give me them) They worked a treat for the HA but KOd me :-)

Looks like i may have a wait for the neuro though. Just rang the hospital and they have no appointments and are waiting for the appointment list from the neuro department. I have to ring back friday to book one.

I did ask he out of curiosity how long the waiting time generally is and she said that they were currently taking appointments for the end of december/january and start of feb :'(

Ah well may get lucky and get one soon and at least i am in the system now.

Title: Re: Any Help appreciated (new to board not to ch)
Post by LeLimey on Nov 28^th, 2006, 6:22am

When they ring back accept whatever they offer but ask for a cancellation to be given to you too - there are likely to be alot so it's worth mentioning you'd accept an appt on short notice!
Imigran nasal sprays aren't much cop, the Zomig are better so here's hoping the rapimelts do you some good too :)

Title: Re: Any Help appreciated (new to board not to ch)
Post by LeeS on Nov 28^th, 2006, 12:04pm

Hi Craig

O2 therapy is well worth a try. If you're still struggling to source it either via primary or secondary care, you may want to consider volunteering for the O2 trial currently running at the Institute of Neurology in London (they are conducting it to prove once and for all that O2 can and does work well in CH).

It does involve a single trip to the hospital (to clue you up on the protocol) but they will pay all expenses. They will also take you 'under their wing' thereafter, and advise your GP how best to proceed with future therapy.

Just IM me if you would like further details (or speak to Helen ;))

-Lee

Title: Re: Any Help appreciated (new to board not to ch)
Post by Melvyn on Nov 29^th, 2006, 9:40am

Hi Craig,

after seeing 3 doctors at my local surgery and the 3rd flatly refused Verapamil and O2 - suggested stopping smoking and acupunture - I took Helen's advice and asked to see a neuro.

Don't know what was in the referral letter but I had to wait 5 months for the appointment - but it was the best thing I ever did.

Got a copy of the letter from the neuro to the GP - It was caustic to say the least - he even said I was very knowledgeable about the condition - recommended verapamil and O2 - and suggested the GP should log into OUCH UK as there was a lot of info there!!

The neuro also told me that a friend of his who is a GP is also CH and has trouble getting Imigran in sufficient quantities. He said he would bang the desk if he was treated that way.

So keep going for it and do ask for a copy of any letter the neuro sends to your GP.