Hi new here!!!

[Paul1696]

Hi

My story- I developed ch at 16 and I'm now 43. Was misdiagnosed with migraines for 2 years until I stumbled upon a medical book dedicated to headaches and didn't take long to discover what I had was clusters. I went back to the Drs armed with my information and dr agreed with my diagnosis.i was sent away without any medication and told to record my headaches and return in 3 months with this information which I did but was now out of my cluster period. He prescribed me some sort of preventative maybe steroid based but can't be sure!! (Was a long time ago)

I took this medication for 3 months but stopped and didn't continue with it. (Don't know why)

Anyway I've put up with clusters without any medical intervention for 20 odd years now!!!

My cycles were always very regular in as much as they would always turn up late September and dissapear early January(give or take a week or two) and my clusters would always be fairly mild to start with and escalate as I went further into my cycle with upto 6/7 clusters in a day at the peak with lots of level 10"s during this peak period and then they would gradually taper off and dissapear.

During these years I've discovered a few triggers which have helped immensely in managing my clusters. Alcohol is a definate so too is phenylaline. This artificial sweetener is in a surprising amount of food ranging from crisps/sauces/drinks and nearly every diet food or drink. By being careful with what I ate and drink I dramatically reduced the number of clusters I was getting every cycle.

Other triggers for me were artificial heat sources and irregular sleep patterns.

When I was 41 I had a bad tooth ache and this intensified both duration and intensity of my clusters but after having the tooth out within a week my clusters tapered away and I was cluster free for 2 1/2 years and as you do you start to think they've gone for good!!! Then BANG there back with a vengeance. Only this time not at my usual time? They'd decided to come back in the height of summer and these clusters were slightly different in as much as they only gave me around 1 or 2 minutes till they hit full intensity and were accompanied with severe sweating? I got my first attack completely out of the blue whilst driving and had nowhere to pull in and ride it out which wasn't much fun as my more severe clusters are always accompanied by nausea so must of looked a complete mess pacing around the lay-by moaning and swearing completely wet through with sweat and covered in puke!!!!! Gotto admit I've never been so scared during an attack and actually thought I was going to die!!!!!!!

I'm now 3 weeks into my cluster period and can't find any pattern whatsoever. I've had far more scale 10 clusters than I've ever had before but some days I've had 5/6 a day but only registering a 3/4 on the cluster scale and often subside quickly around 15 mins?

Today I woke up with a scale 10 and unfortunately woke up my 10 year old daughter with my whaling and moaning and she was extremely alarmed with the amount of pain I was in. I also hide away when getting a cluster and have rarely let anyone including my partner see me in this state and feel terribly guilty for letting my daughter see me like this.

And that's why I'm here. I promised my daughter I would seek some help with my clusters.

Somebody help!!!!!

[Rod H]

Paul I'm the same age and your story sounds like mine minus the puke. There are alot of good answers and people here my best advice is to read as much of these forums here and decide what treatments you are most comfortable with. But definitely get o2. It is a lifesaver. Rh

[Paul1696]

Thanks for your response tbh I don't have much faith in gp"s!!!

I've been trying to track down some shrooms without much success as season doesn't start until sept/oct but have just come across some supposed lsd am currently awaiting a test kit to confirm. Not taking any chances! lsd hasn't been easily available in the uk for a very long time. I have some experience in psychedelics using both magic mushrooms and lsd in my youth so have no fear in taking this route apart from the obvious of making sure what I've actually got is lsd on the blotter and not something else!!!!

I have booked an appointment with my gp in the hope of getting some o2 and by reading lots on the subject i am optimistic of some relief with this.

But results using the "illegal" medicine looks far better in my opinion and has got to be worth a go?

This recent bout of clusters are just so unpredictable and am always on edge as to when one will strike next which isn't easy with a very busy life and on the road driving a lot as part of my job.

They really are affecting my life quite dramatically and am absolutely desperate to break this cycle!

I'm Researching as much as I can on the subject but have found far more information regarding mushrooms than I have lsd. My main concern is dosage size? I can test for presence of lsd but can't test what dosage I have on tab?

Anyone help with this?

Thanks

[Rod H]

I can't help you with the testing. But I can totally relate to the frustration of the chs and how they affect your life,family,job,etc,etc. Hang in there bud and get o2 it will help. Rh

[CHfather]

Of course, you are completely correct not to trust gps.  You can try to remedy that by bringing information with you. Here, for example, is the Mayo Clinic page on treatments: http://www.mayoclinic.org/diseases-conditions/cluster-headache/diagnosis-treatment/treatment/txc-20206693 Sadly, your gp probably won't prescribe oxygen -- it seems to be common in the UK that you get referred to a neurologist first.  But if your gp prescribes sumatriptan injections (Imigran) for aborting attacks and verapamil as a preventive, you'll have some things that will probably help you.  Persist about the oxygen, though -- it will change your life. (And you can bring it with you while you're driving, too.)  Frankly, the Imigran will also make your life better, in my opinion.  You have to be careful with it, but for most people it will quickly stop an attack.  Here's some info about oxygen: https://clusterbusters.org/oxygen-information/

 

Mushrooms, LSD, and other psychedelic drugs ("busting" substances) have a different function in treating CH than oxygen (or sumatriptan).  Taken a few times five days apart, busting substances can end a cycle.  But between those times, you will probably continue to have CH attacks.  Sometimes they can be even worse (or more frequent) than what you're used to. (Some few lucky people find that one dose can stop a cycle or significantly reduce attacks.)  So you need to be treating your attacks with something other than just busting. (Maybe you don't, since you've somehow managed this far without meds. Most people do.)  Sumatriptan injections can't be used, because they interfere with busting, but oxygen is fine, and lower levels of verapamil don't seem to interfere with busting.

 

Many people can stop an attack, or significantly reduce its severity, by quickly drinking an energy shot (such as 5-Hour Energy) or an energy drink (such as Monster or RedBull) at the first indication that an attack is coming on.

 

And then there's the vitamin D3 regimen, which has proven to be very, very effective for a large percentage of people who do it.  There is probably no good reason at all for you not to start on it right away.  https://clusterbusters.org/forums/topic/1308-d3-regimen/