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#1 Tue, 03/03/2015 - 19:54
Rano1
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Hi all,

this is my first post since recently joining website so apologies if I ramble on.

i have suffered CH for over 12 years but only been correctly diagnosed the past 5 years.

im in the middle of a bout and seems to be lasting a lot longer than normal (currently 12 weeks). To make it worse I seem to be running at a cluster everŷ 6 hours (which is not normal for myself).

on a onset of a bout I take a very high dose of steroids which seem to keep the beast away......until I taper down and bang it returns.

i also take verapamil but only 160mg and seems to have no effect. Today I have gone to 240mg but very nervous on side affects. 

Also have home oxygen but for me only seems to delay an attack and evenentully end up jumping for the injection. Again very nervous as I am taking above recommended dose at moment.

QUESTIONS

Should I be taking verapamil for the rest of my life and what dose should I be aiming for

is there anything else to prevent attacks or am I just not taking a high enough dose.

do steroids work for anyone else or do you feel it returns with avengence when taper down.

anyone else expected the bouts to last longer as you get older (I'm currently 34)

doctor also prescribed Valium yesterday but think that was cause he hd no other idea what to do......it's hard to understand that in this day and age there is no cure for this horrible condition.

 

sorry if this post sounds like all newbies and many of have you answered in previous posts.

 

all th best James

Wed, 04/03/2015 - 08:15
duetto
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I would be worried about  Valium as being on it too long can cause problems, had an aunt on it and could never get off it.

Wed, 04/03/2015 - 09:42 (Reply to #2)
Rano1
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Yes totally agree - on the plus side I have only had 5 days supply

Wed, 04/03/2015 - 11:23
oxfordgarage
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Hi James yes it is pretty normal for Ch to last 12 weeks or more Im afraid . i am in my 13th week of attacks about 6 to 7 every night as soon as my head hits the pillow all be it this time i seem to be suffering less during the day with the exception of shadow headaches all day!......you do not mention oxygen in your post. Have you been prescribed oxygen it is a 90% godsend in aborting most CH attacks and whilst its not a cure or preventative it does help you control the beast until your cycle finishes hopefully. There is plenty of info on this site about oxygen. good luck and I hope your beast goes soon!

kieron

Wed, 04/03/2015 - 11:58
Rano1
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Hi Kieron

Thanks for reply. Yes I have home oxygen but seems to only.delay for one hour or so.
Do you take verapamill too if so what dose but by the sounds.of things nothing is working for you at the moment. As like us all its really starting to get to me
Thanks James

Wed, 04/03/2015 - 13:46 (Reply to #5)
Dorothy
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Hi James

Sounds like you could do with chatting to one of our volunteers on the helpline 01646 651 979

There's a lot of info here on the website for you to browse through but I think you would benefit from ringing and speaking to someone who understands what you are going through and can talk you through your options.  If you haven't already got a neuro, they'll advise you on where the nearest headache specialist is in your area.  Remember that before increasing your Verapamil dose you need to have an ECG.  You don't need to be taking Verapamil when you are out of cycle but if you leave your details on the helpline (landline number if possible) they will ring you back free of charge and can give you advice about that.

All the best,

Dorothy

Wed, 04/03/2015 - 18:52 (Reply to #6)
Rano1
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Hi Dorothy,

Thanks for your post. I actually spoke to someone today from helpline and it was nice to have some understanding. He also mentioned that many people seem to be saying their current cycle is going on longer than normal.

By some coincidence I do have a neurologist appointment in 2 weeks...I do hope they are gone by then!!

Nce to speak to others in same boat.

All the best James

 

Thu, 05/03/2015 - 18:26 (Reply to #7)
Rano1
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Hi all,

i just wanted to let you all know I had an optical nerve blocker injection today (bank of head)....will keep you posted on results.

Procedure was fine and that's coming from someone scared of needles.

 

James

Sat, 07/03/2015 - 14:05
oxfordgarage
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James hope it works for you. The only treatment I am currently on is oxygen and imigran injections. Over the years I have had verapamal and steriods and did'nt seem to work. i just work my way thru the cycles as best I can and pray they go soon.....In most cases oxygen does abort and attack but you are right withing an hour and a half I am woken again with another attack about 8 a night at the moment,,,and of course the bloody shadow headache for most of the day intil i go to bed and then the beast comes back....I hope my cycle will come to and end soon this is the longest cycle I have had in the last 35 years.

kieron

Sun, 08/03/2015 - 12:01
tangerinearmy
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if you rely on the doctors to help you with ch you will be very very disapointed and incredibly frustrated.the only way this condition will be beaten is by the sufferers themselves

so bearing that in mind look into 

 

the vit D regimen on here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416

 

AND IF YOUR SUITABLE

bust it

 https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?submit=submit

Sun, 08/03/2015 - 13:29
JustinF
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Hi james

our situations sound quite similar, so although I've posted separately I thought I would add to this.

my current cycle is longer than I've known before and much more aggressive at the moment. And I've heard the same thing from many people, most recently from the O2 delivery man who said he's seeing a lot of people saying they are suffering more than normal.

im in the process of trying to sort out a regular neuro, but in he meantime have used prednisolone to give me a short break and some needed sleep.....I am preparing for it to return and have been considering trying verapamil next (although I need the neuro appointment first!).....in the meantime will continue with the O2 and triptan sprays for as long as I can if it does return when the pred tapers off....hopefully this cycle will end naturally before verapamil is needed.  I understand that it takes some time to build up in the system? Does anyone know how long this can take in general (I appreciate that this still doesn't work for everyone)

Justin

 

Sun, 08/03/2015 - 13:51 (Reply to #11)
tangerinearmy
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see my above post

Mon, 09/03/2015 - 13:07
Rano1
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Hi Justin,

Really appreciate you writing on my thread (I am very new to website and as everyone says it's nice to speak with other suffers - should have joined a long time ago). Like you this is by far the longest it has lasted and last week was running at one every 6 hours which was not normal for me. I see some people get it a lot worse and my heart does go out to them!

There are prob a lot more people on here with FAR greater knowledge than myself but can give you what I know :

When I start having a bout I start on the steroids at 60MG for 5 days and reduce by 10MG every 5...like everyone when I taper down BANG the beast returns!!(but steroids do stop me sleeping) I also go on verapamil but since speaking to one of the helpful people on here I was nowhere near the dose to combat cluster headaches. You can increase by 80MG per week AND PLEASE MAKE SURE YOUR DOCTORS CARRY OUT regular ECG's (every time you increase). Mine have not been bothered. It seems you need to be at 600MG plus! By the time you get to that level you may be coming out of the bout.

last Thursday I had a nerve optical blocker injection into back of the head (but also back on 50MG of steroids - will taper down to 30MG tomorrow) and only had 3 light headaches since and managed to get rid with oxygen alone! Is that the cycle coming to the end, the injection or the steroids..I'll take any one of the scenarios!

I am seeing a neurologist again next week and waiting for information on Melatonin to discuss this with him.

 

Also you mention the nasal sprays - get the injections, work so much better.

 

looked into vitamin D regime but slightly concerned/scared at the levels you need to take but as other people post god knows what triptans, steroids etc do to your insides!!

 

Sorry I just realized this is quite a long post lol!

Anyway hope you get some relief soon and you get a neurologist that cares! local GP's just do not understand.

James

Mon, 09/03/2015 - 14:43
Phil
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I would personally wait 'til OUCH endorsed the vitamin D regime, or any dodgy treatments:
There's a lot of bad information on the web and a lot of desperate sufferers willing to take risks.

_________________________________________________________________________ Yeah I know, my coat's already on.

Mon, 09/03/2015 - 15:06
Mr Git
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Couldn't agree more

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Mon, 09/03/2015 - 16:04
Rano1
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Yes agree and I have to be honest reading some info on Vitamin D and levels needed really put me off and the stuff coming from America about magic mushrooms just makes me even more concerned. But as you point out people get desperate and will try anything.

Last week I was in that boat where I would have tried anything really got to me! Glad the neurologist called and am trying the optical nerve blocker.

 

James

Tue, 10/03/2015 - 11:52 (Reply to #16)
tangerinearmy
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its all well and good waiting for ouch to give the ok

but 

 

are you still suffering using methods that are recomended ,i  am currently going through my longest remission period since the beast entered my life in 1999 and it coincides with starting busting and vit d 

 

coinicidence--maybe maybe not.

 

 

dodgy treatments in my opinnion are when i take medications that need medications and do nothing.

 

 

just my 2 pennies worth you'll get there in the end.

 

Tue, 10/03/2015 - 12:00 (Reply to #17)
tangerinearmy
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steroids

verapamil

valium

injections in back of head

ecg s

imitrex

 

and still you get headaches  but hey there what the doctors give so they must be right.

Tue, 10/03/2015 - 12:36
Rano1
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Same as you, one of the longest periods I have ever had!

Steroids work early on when on a high dose.

Verampill - Seems I was no where near the level to combat this condition anyway.

 

Valium - because the GP had nothing else to offer - DID NOT HELP AT ALL!

Did have an optical nerve blocking injection last week and have only had minor headaches since but i would add I am still taking a relatively high dose of steroids and wondering if my current cluster is coming to an end.

 

Got to be worth a shot for anyone who is interested - Not sure what other people's view's are on this injection.

 

Sean - Not sure if you will see this but you seem to be up to date on treatments etc, would welcome your views.

Tue, 10/03/2015 - 12:56
Rano1
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Sorry i mis read your post you are now in remission

 

Do you notice any side effects on a high dose of vit d?

Tue, 10/03/2015 - 15:16
Mr Git
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Hi James

The GONB forms an important part of my treatment strategy. I doubt whether I could cope with 3-4 months of 7-8 attacks per day when you can only inject 2.  The DV has made a massive difference in addressing the other attacks, but it still isn't a viable situation for me. Therefore, the GONB is a lifesaver.

The sad thing is it's a bit hit and miss. It doesn't work for everyone, sometimes it does work for you on one occasion, but not the next. There are no guarantees, but it can make a massive difference. My first one gave me 3.5 weeks total relief. My second one gave me just under 3 weeks relief. Much needed and I was so grateful for it.

All you can do is maximise your chances of success by getting it done by an expert. Technically, a GONB could even be done by your GP, but who would you rather stick a long needle in the back of your head; someone who may have done it once in their career, or someone who has done it 4 times a day for the last 10 years. I know who I would choose. I travel just under 200 miles each way to see Juana who kindly does mine, hence the success ratio.

Sean

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Tue, 10/03/2015 - 15:39
Rano1
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Can't fault your responses to posts Sean.

the neurologist did mine last week and explained very similiar to you - Only works for some and times vary across all patients - may have 3/4 days relief or may put a stop to current bout.

 

I am seeing him again next week and will discuss in more depth the speed at which I can get it done - My local GP had no knowledge of it  - I was very lucky I had an upcoming appointment (and saw me before this date.

 

Seems you get it far worse than me - last week I was running at your levels of one every 5/6 hours and i have to admit I did overdose on injections! It was really getting me down and stressed out.

you mention Juana a lot, I live in South Wales (dont judge me lol!) is it worth seeing this neurologist? Is there a charge - I do have healthcare with work so wonder if i could use that?

Was worried on your post about verampill leading to chronic cluster headaches!

 

James

 

 

Tue, 10/03/2015 - 15:46
Rano1
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Hi Sean,

 

Understand OUCH are busy at the mombnt so wondered if you had the melatonin regime taht I could discuss with NHS neurologist next week.

 

Cheers

Tue, 10/03/2015 - 15:57
Mr Git
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James

Please try to avoid going over 2 per day, I know how difficult it is. Do you have a DV? Are you in a position to get hold of one, it can help overcome that problem. Also bring Red Bull and cold compress into play. Are you up to speed on Polar Powder?

Re your neuro. Depends if he/she is on the 'good guys list'. Did Val recommend your neuro, Val is based in south Wales. If Val says you have a good one then no worries. If not, then you can ask to see whoever you want under choose and book. There is no charge, you can see Prof through the NHS.

If you want to go down this route then PM me and I'll provide you with Juana's details.

Re - Verapamil. It's a tricky one. One of those situations where I suspect many people think it, but aren't prepared to say it out loud. I wish they would so I could weigh up the risk for myself. My dear friend Mike is the only expert I have met with the cojones to say it as it is. Therefore, you may find it difficult to find anyone to verify what I said, and I don't want to scaremonger, I may be wrong. It is just my personal opinion which I base on a conversation I had with Mike. I understand Prof admitted to Mike that there MAY be a connection - unconfirmed.

Sean

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Warning: This forum may contain nuts
 

Tue, 10/03/2015 - 16:08
Rano1
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Im looking into the DV and have welcomed your advice on threads!

 

You have beenn greater help than any GP I have seen.

 

Have also PM you.

really do appreciate your help

Tue, 10/03/2015 - 17:40
tangerinearmy
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No side effects apart from feeling great

but

get a blood test and follow the guide properly read read and read

 

long term sufferers getting remarkable results some may not like that but thems the facts

i know what I'll be doing and it won't be involving ecg s christ how scary is that

 

just my opinion ofcourse

Thu, 12/03/2015 - 10:22
Val
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Hi everyone

Re: the vit d regime and the 'busting/busters', OUCH does not support, suggest or advocate their use.  The view expressed by Tangerine Army is his own, not that of OUCH (uk).

Val.

Administrator 

 

 

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