Jump to content

Newly Diagnosed


Hejada
 Share

Recommended Posts

Well, I've finally been diagnosed with Cluster Headaches, after enduring years of useless treatments for "Sinisitis", "Neuralgia", "Migraine" etc, and being left for hours in A&E after doctors continually write "Headache" on my notes and wonder why paracetamol isn't working. I've been put on daily doses of Verapamil and have a couple of Sumitriptan Nasal sprays when the warning pains come.

I appear to be one of the lucky ones whos clusters come once a year(Around oct-dec time) for a period of about 6-8 weeks - Maybe you guys could help me with some home remedies? I'm 23, and male by the way, and clusters started when I was around 19-20, and I've noticed with each cluster the pain is progressively worse. Which is worrying.

Link to comment
Share on other sites

h'88, sorry you had to be here, but you're at a good place.

Some home remedies:

OXYGEN, the best friend of most CH sufferers -- You gotta get it ASAP:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

D3 regimen -- Has helped a whole lot of people quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 (Be sure to read about interaction with verapamil.)

Quickly drink an "energy drink" (RedBull, Monster, etc. -- high in caffeine and taurine) at the start of an attack

Melatonin: roughly 9-12 mg. about half an hour before bedtime

And of course busting with seeds or other substances. Great results, no side effects (though illegal, and it's best to stop taking verapamil and sumatriptan before you "bust."). A lot to read here on that subject, in the "Clusterbuster files" section.  Maybe start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

Ask questions; you'll get help.

Link to comment
Share on other sites

Thanks CHFather, I appreciate it. :)

I'm in the UK - I suggested an o2 prescription to my doctor before, and he said it was "too expensive to justify", and refused. My neurologist flat out refuses to see me more than once a year, and no one seems to know anything about it(It actually took me giving the wikipedia printout to her to make her realise!)

Sorry to sound thick, but is melatonin something you can buy over the counter...?

Just reading the links you posted now. :)

Link to comment
Share on other sites

Hi Hejada,

Wow your case is an extremely typical test book case type.

So glad you've found your way here where people (such as myself!) are finding truly significant relief, and REALLY glad that CHfather has responded already and laid things out so clearly for you.

I've seen many folks from the UK (and the US!) speak of how their doc refuses to prescribe O2. Something else I've seen is UK'ers talk of how there's a new NHS rule that allows patients to switch to a doctor who isn't an a-hole! Yay for that!

Here's a link to O2 in the UK info provided by OUCH UK:

http://www.ouchuk.org/html/news/High%20Flow%20Oxygen%20Therapy2010.pdf

I bet at their message board they could really help you with the switching doctors thing too.

This is the place to be though for learning about the most effective CH preventatives, which also happen to be natural/non toxic.

I've read that melatonin is not available over the counter in the UK, darnit. Maybe some OUCH folks could advise on that ...? I'm not sure, last I heard, very much unlike the US OUCH, they were very conservative in regard to therapies, strictly endorsing the medical establishment's take on how to treat CH, so beware...

Link to comment
Share on other sites

Hi there Bejeeber,

I have to say it's lovely how welcoming you all are here. :)

I searched in google for "cluster headache forum" as there seems to be a forum for everyone elses issues these days.

Thanks, I'll certainly check those links out, anything that can help, as Oxygen seems to be almost a miracle cure for what I'm reading on here. So far Sumitriptan spray is working quite well to abort an attack (The verapamil seems pretty useless), and there doesn't seem to be a lot of ways to manage CH without breaking the law.

I have heard rumours of smoking weed can sometimes help, and over here in the UK if you get caught smoking it/owning a small amount then u dont really get much more than a slap on the wrist - Would you/anyone know if weed is effective?

Link to comment
Share on other sites

Most CH'ers who've tried weed report it makes their CH worse, and attribute it to the fact that it's a vasodilator. Occasionally someone (like I think our Ricardo here) won't have a problem with it.

If I'm not mistaken I believe I've seen UK'ers report being able to legally order RC (Rivea Corymbosa) seeds online, and those have become a popular busting substance around here, especially since they provide little to no psychedelic side effect. I bet those'll be really good to look into.  8-)

Maybe some others can weigh in on whether the UK site for ordering RC http://www.allsalvia.co.uk/ is a good source.

Some more specific RC "how to" can be found here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

Link to comment
Share on other sites

I should've also mentioned that unfortunately sumatriptan completely blocks the therapeutic effects of busting agents, and verap blocks them somewhat.

So it's necessary to be off the triptans for 5 days before busting. This is where getting the O2 and using it instead of triptans to abort attacks comes in really handy.

Link to comment
Share on other sites

Hi Hajada,

I'm based in the UK too and have pretty similar story to yourself. Have had them for 14 years, Starting when I was 18, wrongly diagnosed til I was 25 and each episode I've had has got progressively worse.

I ended up looking on here when I started having problems with some of the more conventional treatments but as mentioned above it's still worth signing up with OuchUK. You can get a lot of support from them in regards to NHS regulations and treatments etc.

You really should persist with trying to get oxygen. Change your GP if need be. You need to have one who can give you support. Oxygen is listed as a first line abortive for CH in the NHS and is considerably cheaper than daily Imigrane (sumatriptan) injections. You can print this out and show it to your GP http://www.ouchuk.org/html/news/Precriber.pdf

It's written by the UK's two leading experts on CH and conveys the seriousness of the condition, listing oxygen as the best abortive.

Also, as Bajeeber mentioned, you can actually ask to be treated by any hospital in the UK. You can request to go on the waiting list to be treated at Queen Square Neuro hospital in London. It's very well run and you'd never be restricted to just one appointment per year if you needed more.

Link to comment
Share on other sites

Hi there Basoon, so have you found 02 to be helpful in aborting the attacks? I have to say the degree of pain they are at the moment I actually cannot imagine them getting any worse!

Thank you so much for the help, I will be following the steps you've advised and letting you all know how it goes. :)

Link to comment
Share on other sites

Yeah oxygen works amazingly well for me. Apart from the middle of the night attacks if I can get on oxygen during the day right at the first tingle of an attack, it'll generally stop it from coming on totally.

It's not as effective for everyone but it has proven efficacy. Goadsby carried out a double blind controlled study and though I can't remember the exact results it was something like 70-80% successful in aborting attacks within 15 minutes. It generally works quicker than that for me. Also, unlike other treatments there are basically no side effects and no health risks from long term use.

Link to comment
Share on other sites

Given me a bit of hope, thank you. :) I've set up an appointment with my GP again and will give him the printout of that link.

Yeah the night attacks are the worst - Nothing can stop them and are sometimes even more painful.

Out of 10, with 10 being your head actually exploding and 1 being a normal headache, how painful are your attacks after the few years you have had them?

Link to comment
Share on other sites

Out of 10, with 10 being your head actually exploding and 1 being a normal headache, how painful are your attacks after the few years you have had them?

From my personal experience in the 'ol days and what I've seen others report, I think its fairly common for the intensity to ramp up as the years go by, as you've found so far.

Don't let it worry you about the future though - the future is much brighter for CH'ers here in the new days. 8-)

The beast has a tuff time treating you to his nuclear pinging behind the eyeball delights when you've busted him with a merciless knockout punch. Or 3.  :)

Link to comment
Share on other sites

Hi Hejada,

Welcome to the group. Sorry you have to be here.

I'm also UK based (US by birth). Years ago I managed to find a wonderful GP that listens to me. Then I got clusters, and she still listens to me, and generally goes with what I want to try. Like coming of my Neuro prescribed Topiramate and trying the D3 Regimen that I found out about on CH.com and here. She's 100% behind me. So, there are good doctors out there, and don't put up with a rubbish one. Move to another surgery if you have to.

I also have a good Neuro at Addenbrookes, although may see about getting to the specialist centre in London where there is a cluster 'expert', if there is such a thing. I don't think any doctor out there really knows more than the people on this site.

RC Seeds are legal to buy in the UK as far as I know. I ordered some online a couple weeks ago, and as soon as my body has detoxed from the Topiramate, I'm going to give Busting a go.

Hang in there. Try everything. Get a good doctor. Avoid weed, avoid alcohol.

Renée

Link to comment
Share on other sites

Hi Renee,

Thanks, you seem to have hit the jackpot there! It was good to find out that you can change doctors if need be - I thought once you had a GP, that was it unless you moved.

Are you talking about the Queens Park Hospital? It looks promising there, I've emailed them to see whats what.

These RC seeds look interesting - Would you say it owuld be best to take them only in an active period or all year?

Thanks, yeah I've always had a low tolerance to Alcohol and react badly to weed so they are probably connected..

Probably should quit smoking as well...though I haven't noticed any adverse affects(aside from the usual).

Link to comment
Share on other sites

Hi Hejada,

I'm not the expert on when to Bust. Am just starting out myself. There are lots of good articles in the ClusterBuster Files section that will help you. And I'm sure others will comment too.

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files

When I joined the site, I spent a couple days just reading through all the information there. Eagerly reading it I should add. I think I commented somewhere that I was reading this site like a woman, crawling out of a desert and dying of thirst, would guzzle down a glass of water. You see, I have pencilled in a date in my calendar to say good-bye to this world if things don't improve. So busting is my last resort, my life line.

I always considered phisocybin an extreme option, even though I've known about it for a year or so. That is, until I started pencilling dates into my calendar. So I say, do what you have to do. If changing doctors helps, then drop your current doctor like hot rock. If stopping smoking helps, then stop as quickly as possible. I've never smoked, so don't know.

Decide now you are going to find a way to stop the attacks, then read everything, and find out everything, and talk to everyone.

But maybe, that's just me. Renée

PS, Yes, I believe it's Queens Park Hospital I'm thinking of. I have it in a comment from someone, and going to talk to my GP about it when I see her this week.

Link to comment
Share on other sites

Hejada, I think you've received the central advice subscribed to by most people here.  RC is more than "interesting": for many people, it prevents not just attacks but whole cycles.  To answer your question, the general approach is to start taking it at the very first sign that a cluster period is coming.  Some people "maintenance dose" during the year, generally every few months. Some people do it more often and some less often.  Once a cycle has started, it takes more doses to break it -- but it will almost certainly do that.

Here's a paper on the effectiveness of LSA, which is the active ingredient in RC: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

And here (again) is a specific file about seeds/LSA that Bejeeber linked you to (although, as Renee says, the more you read the better off you are):

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

Some people think RC is a kind of second-class treatment compared to psilocybin mushrooms, but there is no evidence that that is true.  Some things work better for some people.

Your challenge will be the "detox" that's required before trying them. To detox you need something that will reduce the pain for those five days (or maybe you don't--you've made it through many cycles already with nothing that really worked, and I can say that my daughter went many years without taking any effective meds at all for her (misdiagnosed) CH).  The D3 regimen (which I linked to in my first message to you) has worked well, and quickly, as a preventive for at least 70 percent of people who have tried it.  And if you get oxygen, it is almost certain to work as an abortive. In the "oxygen page" that I gave you a link to above, you can link to the formal journal article about O2 effectiveness (which might be most impressive to your doc), and you can see that O2 is the #1 recommended abortive according to European medical standards.  Doctors can be incredibly dense about this, but I always figure the more ammunition the better.

While there are some people here who think that quitting smoking will help with your CH, I think it's fair to say that there doesn't seem to be any correlation.  People quit and keep getting them, non-smokers get them . . .  Even with weed, as most people find that it makes things worse, there are some reports (and even one journal article, about one person) that it works as an abortive.  Our friend Agent Orange has said it well, that we are "citizen scientists" here, working together to find the best courses of treatment.

Finally, you should probably sign up at the site of the company that is trying to bring to market BOL-148, which seems like an exceptionally powerful antidote to CH.  They have said they might be doing clinical trials in Europe (and the US) next year, and you might want to be alerted if that happens.  http://www.entheogencorp.com/community/

Link to comment
Share on other sites

CHFather, excellent advice and thanks for the link to the BOL-148 website. I didn't know that.

Hejada, just to comment on how we are all unique, and some things work for some and not others. For me, alcohol is an abortive for my migraines, and doesn't affect my clusters one way or another. But most clusterheads I've spoken to, say alcohol is a sure way to trigger a cluster.

Renée

Link to comment
Share on other sites

Here's a link to that double blind trial I mentioned on the efficacy of oxygen:

http://jama.ama-assn.org/content/302/22/2451.full.pdf+html

Might be a better thing to show your doc then the link I posted earlier as it's specifically about oxygen and it's taken from a respected, peer reviewed journal. It concludes that oxygen aborted attacks within 15 minutes for 78% of the trialists.

If they agree to authorise it then here's a part completed oxygen order form:

http://www.ouchuk.org/html/news/HOOF-new-part-complete-amended.pdf

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...