Hi,

I'm a 31 year old from the UK, and been suffering from CH since I was a kid. As is usual only diagnosed about 4 years ago after years

and years of stupid GP's.

Just wondered if any of you could give some advice regarding medication. I was originally put on verapamil after my diagnosis which

at first caused a few crazy heart racing problems for the first week then settled down. I happily went on taking this for about 3+

years even though it made me feel abit tired. Had about 1 or 2 attacks a week and sometimes a month or two with none at all things

were great.

Then in Oct last year the clusters decided to come back
5 or 6 attacks a day everyday ended up in hospital after a few days due to overdose in Sumatriptan Missed a few days work got a

GP + Neuro appointment to increase the Verapamil.

However, the increase in Verapamil started making really tired and causing my whole body to ache, I mean not like tired ache but like

pain in every single part of the body to such a level could hardly move properly, and whats worse is it wasn't relieved by sitting

down or lying down (that made it worse)

The routine ECG then flashed up red, first thing next morning called in to GP's to reduce the dose because something was wrong. Dose

reduced = clusters worse again, so went to Neuro who decided to try Topiramate, worst thing ever I started hearing things that

weren't there and felt very sick.

Neuro then said about Lithium, which I have been taking for a month now and gradually increasing the dose. At 600mg dose though the

weird all over body pain is showing up and its not doing anything for the clusters. Its also making me feel very sick, tired and my

pupils are really huge and really sensitive to light. I have mentioned this to him and he said I am on the last real way of helping

with cluster headache so give it a chance. Then the dose went up to 800mg and symptoms much worse, I'm having to avoid food now to

help with the pain.

So at the moment I am signed off work, going to lose my job soon and in constant pain all over, and still getting 4-6 attacks every

single day. Scared and to tired to leave the house anymore, which isnt like me.

I read on your site about D3 treatment thing, but thats probably best if I come off Lithium and get oxygen first? Trying to get

oxygen Neuro keeps saying yes since november and we are now in Feb :S

Sorry for long essay Hope someone can give me some advice.

Thanks to anyone who reads

Hi and welcome.

First, get a different Neuro, fast. Needs to be a headache specialist. Any Neuro worth his/her salt would have you on O2 as a first step.

Where in the UK are you?

Have you looked at OUCH UK ?

As Mark said, read and ask questions about D3. See the thread "123 days pain free...." In the Medications and Treatments section.

Best,

Peter.

Raw,

Don't even dream of begging.....Demand. O2 is an absolute basic for CH. can you not go to someone else? I don't know how the system works over there, but this guy is not helping you, by the sound of it.

Regarding D3 and Lithium, I'll let Batch ( the Guru on this) guide you. In the meantime, start reading.GOOD LUCK,

Peter.

Hey Jon, the person at Ouch meant after verapamil cant be used or doesnt work, then the other preventatives are unlikely to work or the side effects are so horrible it cant be continued.    

You say surgery is a last resort but if all preventatives fail and I'm getting 4-6 attacks a day, everyday aren't I at the last resort stage of things? Well for me it seems like it getting depressed not being able to go to work.

Its sunday today but first thing tommorow gonna get O2 sorted out and try the D3 thing.

Hi Raww and welcome,
You seem to be in a bit of a pickle, It would seem to me that The medication you have already tried doesn't agree with you, so as a last resort ask your neuro if you could try Indomethacin, this has a good record in treating primary headaches that resemble CH's.

Cheers Hoppy

Raww wrote on Feb 28^th, 2016 at 4:02am:


Yo Raw...you are among people who know the depths and breadths of desperation...which means you are in the right place. Verapamil is NOT the be all and end all of treatment before giving in to the knife. Thousands of years ago...when folks presented with "headache"...they drilled holes in their skull. We have" progressed" to the point now where they drill holes in your skull and shove wires in your brain...YIKES!


You've only yet begun to fight before THAT! Read everything here....especially :

D3...  thread "123 days pain free...." In the Medications and Treatments section.

oxygen info tab at the left...if you use that right (minimum 15 lpm) your chances of relief are tremendous and the first time it works I guarantee you will weep tears of joy...and there's a few thousand people here who will confirm that......


Check out the gammacore......

Create a "headache diary" recording times and possible "triggers".... which could be foods (alcohol, glutamates),  or smells (perfume, petrol) or actions (like exercise or overheating) which can then be avoided....

Slam a COLD energy drink that contains at least 100 mg of caffeine and 1000+/mg taurine at the first sign of a hit....Red Bull is the famous one...but it is expensive and low in these ingredients...buy the cheapest that has the right amounts...

Imitrex (sumatriptan) injections are expensive but wonderous..if your body can't handle that consider Zomig nasal spray for hits uncontrolled by any other methods (my last resort)...also expensive but 99% effective for me

Keep asking questions...there is always somebody here...and we care!

Best

Jon

Hey Jon, Yea i got to a VERY desperate place of no hope before i posted here. Now I have got a few new options to try!

I live in the UK and have an unlimited supply of free Imitrex injections and they do work wonders, but having more than 4 in a day makes me feel a bit sick. I do understand your not meant to have more than 2 in 24 hours.

Triggers are definitly achohol even a sip of it so haven't had any in over a year now

I have been keeping a diary of the attacks but haven't written down possible triggers.

I should try the energy drink thing, strangely I love coffee a lot so maybe some link there

Oh and also!!! I have ordered D3 Vitamins and some omega3 tablets so very excited for their arrival

Calling Neuro first thing tommorow to arrange O2 as well so hopefully all goes well

Raww wrote on Feb 28^th, 2016 at 3:52pm:



Coupla other thoughts......

Imitrex...from reports I've read.... acts quickly then fades...hence your need for multiple doses (yur right...shouldn't be more than 2/24/hrs). Consider Zomig NS 5 mg...I found they "protected" me for 12-18 hrs...sometimes 24. Don't mix the two though....

Re the energy drinks...my belief that extra cold helps (numbimg?) and carbonation is important as it speeds absorption....

In my experience with caffeine/coffee I found that the "key" is to only use as needed. If you drink regularly throughout the day your body adjusts...the human body is a marvel of homeostasis!
What you need is a bolus...like a brick through the window.... at the appropriate time...so the effect is maximized....

Best

Jon

G'day Raww, welcome, and just as an aside Indomethicin can be a very effective medication (I swear by it) but it must be taken under the direction of a doctor and alongside medicine to protect your tummy.

Done properly, side effects are minimal and manageable.

AussieBrian wrote on Feb 28^th, 2016 at 6:00pm:


Yes indeed, Indomethacin (aka Indo and Indocin) is a powerful anti inflammatory medication - kind of like Ibuprophen/Advil on steroids – without the steroids! I have taken some seriously high doses of it when I was chronic with CH's for so many years.

In fact, Indo can be considered the "gold standard" in differentiating a diagnosis of Cluster Headaches vs. Chronic Paroxysmal Hemicrania, which is a "cluster like" headache. Experienced headache specialists will try this first, in order to help to reach a headache diagnosis.

CPH sufferers generally get immediate relief with Indocin, while by far most CH suffers do not. Experienced headache specialists have known this for years and use Indocin as a DX tool. As we all know, it is soo important to get an accurate diagnosis......

When taking this med, it is important to protect the users gastro intestinal system.

Marc

Hey Raww,

Welcome to fraternity, I am an apprentice clusterhead like yourself having only had my 1st attach last November. I am still very much learning how to deal with CH however for me O2 and Zomig are great to stop a CH attack in its tracks.

I am very interested in your comments re verapamil. I have been on it (low dose as I cant handle large doses)  for a couple of months now. I too have serious body aches and pains along with ongoing dull headaches which up until now I thought were after effects of CH.

Following a visit to my GP I am off the verapamil from today. I have had blood tests done and will commence the D3 routine once I get baseline blood results.

I received great support in a short time from members of this site.

Stay Positive

Con

Cons Law wrote on Feb 29^th, 2016 at 1:59pm:


In trying to prevent CH, the standard approach is typically to start with verapamil and increasing the dose in intervals until one of the following happens:

• The number of CHs drops to an "acceptable" level
• The side effects become "unacceptable"
• The dose gets beyond the "comfort level" of the doctor

In your case clearly the side effects became unacceptable. We all have our limits which I've found with a few medications like topamax which was great for its intended purpose apart from the fact that is severely impacted my mental processing abilities.

What normally happens when one drug doesn't work (i.e. it doesn't get to an acceptable degree of success before the side effects become too much) is that the current drug is stopped and next potential drug is tried.

If all the possible options have been tried then this can result in an evaluation as to what is an acceptable level of success compared to the unacceptability of the side effects.

Hi Marc

Good to hear you are pain free, but that's not what brought you here.

And if your cure worked for everyone this site would have closed long ago  because the general practitioners would have cottoned on and the problem would have gone away.

I came here with a problem, a headache that was so severe I couldn't cope with it (as many others do)

I came across good advice, poor advice and advice in between.

I learnt (not from here) that I had multiple headaches but it was just one that caused me my problem. I learnt that people with migraine can get pains all over their bodies, I learnt there were no pain receptors where my pains manifested themselves and was told this is normal and to get used to the idea.

I got used to the idea but still the bad pain stayed.

I couldn't understand the badge of honour that people on here wore, “this is a CH site, you ain't got it so bugger off”. Some were more supportive than others and I chose what advice to take.

I have more than one type of headache (according to specialists), I'm not unusual, most CH sufferers do even the “experts” concede that the different HA's can be created from a single source (I know this to be true for both primary and strangely enough secondary types). So is the “pure” CH  something to be held intractably special?

I don't think so! Sure there are some sufferers who can time their attacks by the seasons and time of day and if that's the only problem they have; what I would never say, ever, is lucky for them.

What kicks off that shit awful pain behind an eye in half your head has potentially multiple triggers, there are as many types of triggers as there are personal chemistries/physiologies/psychologies. It ain't one size fits all.

I think we agree on lots of aspects of CH but I don't belong in a box, none of us do.

Some are more susceptible to pain than others, for some placebos work, for others the fright of a time of day or season looming can create that spark of agony. For others its a piece of bone, fibre, ligament, tumour (benign or otherwise), or blood vessel that impinges on a wonky nerve that kicks off the grief.

I have witnessed many putdowns, attacks, counterviews on this site along with welcomes, sound advice and encouragement (sometimes from the same people in different camps).

I don't know what the welcome page should look like, what the proper hierarchy of advice should be but if there is one resource on this planet ( with the ensambled expertise, experience and commitment to assist others in similar need ) then I don't know about it.

Sorry I had (or they said) I had too many headaches for this site.