Hi everyone,

I've got something between SUNA headaches and cluster headaches, it varies. Generally 4-5 hour+ attacks 8-10 level constant pain in left eye/cheek or a series of shorter stabs which are even more painful and make my face violently twitch and vibrate. Sometimes both.

Also I have a chronic, permanent migraine which is kind of controlled via medication.

This has all continually worsened at an exponential rate. SUNA used to be controlled by meds but they no longer work.

I currently avoid killing myself with Medical Marijuana (phenomenally effective, you have no idea) and occasional doses of liquid Morphine.

Every day it is worse. I wonder if there is an underlying, degenerative neurological disease with this is being a secondary headache.

I fear no pain other than this. Recently I accidentally stabbed myself in the finger with scissors, whereby it bled heavily and I lost most of the feeling in that finger. The pain felt like NOTHING. What is the most severe pain possible is continually being refined to even higher levels.

Also the attacks make my heart race, a pure feeling of hyperactivity, I guess it's the fight or flight response. I pace up and down, smoke loads of cigarettes, and make lengthy posts and messages to people like this one.

Been seeing one of the best in the world: Dr Manjit Matharu at UCL in London. However he's exhausted everything so I've been told its medically intractable and surgery is the only option. Currently trying to find private surgeons and raise the funds somehow. If I try and wait a year for the NHS (state funded healthcare) to fund it I might not be alive by then. Id accept any procedure, at any risk.

What a cheery post haha. My heart goes out to you all.

Hi and welcome KDM to the forums and as a member of the multiple headaches club.

Having multiple headache types, especially if they are all active at once, really makes it tough for diagnosis (you've got one of the best in the world there for sure) and treatment.

To understand if there is something causing the different symptoms, which would mean that your headaches are secondary, caused by the "something" and not primary isn't a simple task. For this type of question we need our headache specialist to answer this question.

We all know how tough it can be with CH, some for CH + others, but you have found some "medications" that do help.

What would be really good is to understand all the different things that you've tried as we might be able to suggest something from reading your post, plus we may also learn something too.

No surprise about your heart racing during an attack either, if anything it would be amazing if things like heart rate, blood pressure and more didn't react to a CH. I'm not sure what could be more traumatic.

I'm sure you'll know about ouchuk.org, but if you don't, check out what they know / can suggest as they'll have a much better understanding of how the NHS works / doesn't work and how to get things done.

I really hope you get on top of things soon and do keep us updated.

KDM wrote on Mar 27^th, 2018 at 9:45am:

I wonder if there is an underlying, degenerative neurological disease with this is being a secondary headache.

G'day,  welcome, and all headaches are horrible so it's right you should pursue every avenue looking for a bit of help. We're not doctors, of course, but something you wrote caught my eye.

We suggest to everyone they get CT scans and MRIs to ensure there are no underlying problems.  Have you had these done because it's especially important to rule out other possible nasties.

Please let us know but rest assured we'll help you every inch of the way.

We care,

Brian.

Thanks you two.

I'll write a brief history and all the treatments I've had.

Part 1 - The Beast Awakens

This began in January 2012 very gradually. Initially I was diagnosed with sinus infection, allergies, etc since the pain was severe but nothing like now, plus I had/have heavy nasal congestion nearly all of the time. Initially places on Amytryptaline which helped a little, and Tramadol which barely helped the pain (indicating neuropathic pain). Tests for all that were negative of course so I was sent off to a Neurologist at the local hospital.

He correctly diagnosed SUNCT headaches. Placed on Gabapentin (later switched to Pregabalin), then after a few months Lamotrigine as the pain got worse. Here they were frequent 1-2 second attacks on my left cheek, happening most of the day.

For the next year I was fine, going to work, living life. Then it got considerably worse, and my existing neurologist had no more ideas. So, being the determined fellow that I am, I searched online for the best consultant for SUNCT, and found DR Matharu. Paid for a private appointment where he switched me on to Duloxetine and increased the Lamotrigine. Really saved me. Then in his wisdom he put me on his NHS system so I didn't have to pay anymore. Also had nerve block injections every few months which also helped. The following year was generally fine, minimal attacks.

When it got worse again we tried various meds: including Oxcarbazepine, Lacosomide, Topiramate, Baclofen and others I can't remember, with varying degrees of success. At one point I was taken into hospital and put on IV Lidocaine for 10 days which completely removed the headaches but it only lasted for a few days after I came out of hospital. That is no longer being offered though because a few people had cardiac arrests while on it.

Part 2: Enter Migraine

In January 2016 I had my first ever migraine. These gradually worsened over a few months to the point where it was essentially permanent. Firstly put on Sodium Valproate, an absolutely horrible, toxic drug, but it reduced the Migraine by 80-90%. The side effects started to ruin me from that so then I was placed on Candesartan which reduced the migraines similarly. This year and the next were up and down, some bad patches, some good.

BUT THEN the SUNA headaches decided they had had enough being second best and began to worsen from January onwards, at an incredible rate, leading me to the point in this original post.

The way forwards now is surgery, everything else has been exhausted. So I've been referred to various neurosurgeons around the country who I will see soon. I'm also scheming as to how to obtain a 5 figure sum to pay for it now rather than wait.

I'm happy to talk further about the 'alternative' treatment I'm using, I've done lots of research about how both my meds and cannabis reduce certain neurotransmitters and calm down brain activity.

There we go!

AussieBrian: I've had two MRI scans of my brain and the nerve area, excluding Pituitary Tumour and blood vessels pressing on the nerve as potential causes.

Thank you for the detail.

Have you tried verapamil and lithium? Both can work well for CH.

For migraine, I've had quite a different experience with Candesartan doing nothing and Sodium Valproate doing a good job (only been on it a few weeks so far).

Please post all you consider that might help people.

I haven't tried either of those drugs, however I've not been diagnosed with cluster headaches yet, last time I saw them after I suggested clusters, they said it's very closely related.

I've also got little appetite and a bit nauseous all the time. The herb helps a lot with that too, only reason I can eat.

Sodium Valproate was magical in terms of reducing the migraines. Once I got up to a high dose (always need a massive dose with any med ugh) it went from a permanent migraine to just a hint of it. My migraines would last days before. HOWEVER, I experienced horrible side effects, depression, large weight gain, vomiting, etc. Candesartan has been just as effective without any significant side effects. Hope Valproate works out for you.

But, the most effective medication now is the herb:

It reduces neurotransmitter over-activity according to reliable sources. I can't post links yet but search 'cannabis glutamate nerve pain' if anyone is interested.

Kyle,

Did you get the email I sent?

Take care,
V/R, Batch

Yes Batch I did, thank you for that. I will look into it, seems a harmless treatment to try.

I think I've officially gone insane. I constantly feel like I'm on some sort of stimulant drug and can't sit still or concentrate on anything. And having all sorts of dark and twisted thoughts while retaining a sense of humour about the situation.

This is nuts. I just want to be put to sleep until they find a cure.

Hey Kyle,

Don't dilly-dally...  The anti-inflammatory regimen can work wonders...  Just be sure to start it with the 12-Day vitamin D3 loading cycle at 50,000 IU/day vitamin D3 for 12 days plus all the cofactors...  400 mg/day magnesium and 10 to 20 mg zinc are most important as they support the enzymatic processes in the hydroxylation vitamin D3 to its genetically active metabolite.

Most CHers in the UK order their supplements from iherb.com

Take care and please keep us posted.

V/R, Batch

Will get on this soon as I can. Thanks again.

How the hell do we manage get through this? Strong people.

Hey Kyle,

Have you started the anti-inflammatory regimen?  If not, why not? 

Going for ONS or DBS surgery is not a lasting solution to your cluster headache problem...  Too many of CHers who have taken this route found these options essentially a very expensive poor decision with no real lasting relief from CH pain.  Neither of them work at night while sleeping...

If you've any doubts about my comments above avoiding ONS or DBS, check out the following link by Wildhaus on his 4 year saga with ONS...  Be sure to read through all five pages of posts... There are some graphic photos you need to see...

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If your CH prevent prolonged reading, you can go to the bottom line post at the following link to read the results of his 4 year saga with ONS...

Occipital Nerve Stimulators (ONS).  Scroll down to reply #98

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Take care,

V/R, Batch

KDM, you make my heart break! I no longer will be a cry baby about my attacks (not really a cry baby I feel like one after reading this). I too have a very a high pain tolerance, but I do not know if it is as high as yours. I hope you find the means to be able to have your surgery! I hope that one day very soon you get a pain free day! Keep us posted and please no more talks of killing ones-self (although I've threatened it before during  a KIP 10) it makes us worry and sad!! :'(

Thank you, those are nice words. If you've been suffering 24 years I feel for you greatly. I'm six years in and it feels more and more like it's going to be a life sentence. My life is over, I have nothing, but I'm not genuinely suicidal...yet.

KDM,

Being a chronic sufferer for many years, I have been through most treatment options......except surgery, which I was offered, but resist to this day.

I implore you to try the D3 Regimen for a few months before you make a final decision. I am not exaggerating when I say, it saved my life and I know I’m not alone in that.

Look at it this way.....you have nothing to lose, but your headache.

Also, has anyone ever mention a non-invasive nerve stimulator called gammaCore ? Please Google it. I have been using one since 2012 and it has been a great back up for those few unexpected attacks that I still get from time to time.

AND, I got it from London.

You are not yet at zero option!

Peter.

I've looked at that Gammacore device, been suspicious so far but am seeing good reports so worth a try.

I justy want it to end completely NOW, because it doesn't stop getting worse.

The ONS seems not too risky, non invasive and has a good success rate.

However, the new specialists I see will likely have options beyond surgery.

I just want a job, relationship and meaning in life which I have had less and less of over the years.

I can understand that.

I’m just putting options out there. You will certainly have lots to discuss with the new specialists, and that’s how it should be.

Please keep us updated on how things go with them. It is by sharing our experiences that we all become expert patients.

Peter.

KDM,

You and I obviously differ in our understanding of "Non-Invasive" when it comes to ONS implant surgery.

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This photo illustrates the Phase 1 ONS surgery...  You'll get a few weeks to evaluate the ONS capability before the Phase 2 surgery...

During the Phase 2 surgery, all the red wires are inserted under the skin with long knitting needles into the adipose layer from the neck around to the abdomen where the stimulator is implanted within the abdominal cavity...  I find it difficult to categorize this as "Non-Invasive."

Please believe me we know what you're going through and the good news is it doesn't need to be that way nor is ONS implant surgery your only option.

I've followed three CHers though ONS implant surgery from the intitial decision to proceed with it to the final decision for surgery to have the ONS implants removed... One of the CHers was unfortunate in that he could not afford the implant removal surgery so he continues to suffer side effects...  Two of the three are presently taking the anti-inflammatory regimen and leading very normal lives...

The anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors is an 80% solution out of the box as 80% of CHers  (87% episodic and 76% chronic) experienced ≥75% reduction in the frequency of their CH in the first 30 days...  54% of the CHers starting this regimen experienced a complete cessation of CH symptoms in the first 30 days after starting this regimen.  By tweaking the vitamin D3 dose and cofactors, this regimen can be better than 95% effective.

At best, ONS provides 70% efficacy while awake and if you're able to initiate one of the stimulation patterns at the first sign of an approaching CH...  It is useless at night while sleeping.  If your CH hit while sleeping, you're in for some heavy sledding as ONS is not effective once a CH reaches pain levels above 7 on the 10-Point headache pain scale.  If you average out the Day-Night efficacy of ONS... you get an overall ~ 30%...  How much will it cost you out of pocket for a 30% solution?

The important thing to understand is the ONS only treats the symptoms of CH...  You'll still have CH attacks...  The vitamin D3 regimen goes up-stream to prevent the expression of CGRP, SP and other neuroinflammatory peptides and this helps prevent the actual CH attacks.

So there you are...  55 cents a day for the vitamin D3 regimen and an 80% solution or a hundred thousand dollars (USD) for a 30% solution.

You can quit the anti-inflammatory regimen and save 55 cents a day if it doesn't work after a couple months...  Surgical removal of the ONS implants when you find it ineffective, will cost you another big chunk of money...

Take care and please keep us posted,

V/R, Batch

KDM wrote on Apr 4^th, 2018 at 10:32am:

I justy want it to end completely NOW, because it doesn't stop getting worse. ... I just want a job, relationship and meaning in life which I have had less and less of over the years.

I remember being at that point and I suspect that many people reading this know it all too well.

It is really, really tough to be in the state you're in and to get out, but I've done it, so you can too.

Today I've got a job I love and one where it involves a lot of hard work from my head, leading a team split across NZ, plus an amazing relationship and more.

What got me to where I am now was a combination of Red Bull, oxygen, some preventives that helped a bit and then the huge break through was using D3. That is the reason I'm still here.

Give it a good go, report here how you're going, what (if any) issues you hit and we'll try to help. Plus Batch does an awesome job at updating things too.

Thanks Mike, and a BIG thanks to Batch for more awesome info!

Yep I'm getting on the vitamin regime soon as I can, won't be too long. I will report back how it goes. I've got the regime written down:

10,000 IU D3
500mg Magnesium
500mg Potassium
500mg Calcium Citrate
2400mg fish oil

I suppose I should have said the 'least invasive surgical option'. Some of the other ones are rather more scary, like DBS.

I'll be able to get an op state funded eventually one way or the other, just will take time and a bit of a fight. But first of course I'm trying everything else that mankind has found. Plus I will be having a fresh assessment with a new consultant soon, which could help firm up the diagnosis a little more. It's a mishmash of SUNA/migraine/cluster now, kind of all three at once a lot of the time morphed into some form of bizarre combo-headache.

I do not think it has gotten to the full extremity, pure cluster headache level like that described by some on here. However, that is due to the herb, no doubt, i am lucky to respond well to that, I know many don't so it's not something I want to advise or promote, just that for some reason I do benefit massively, like night and day difference sometimes, and I will let my new doctor know.

Treatments do seem to work on me though, only one of the huge list of meds I've tried wasn't at least moderately effective.

Plus I have developed this incredibly determined, almost arrogant state of mind where I won't accept no for an answer when obtaining things that I need in life to cope (like state benefits that's been a fight), It's very strange it's like I've gone into survivalist, fight or flight mode. No appetite, feel sick, but hyper and remarkably clearheaded a lot of the time constantly searching for a solution in between the more brutal attacks. And making unnecessary long, deep, rambling posts like this and messages to family/friends. It's a crazy state of mind, alive with ideas, like being manic bipolar or something :o

They should provide a link to this forum with the standard information sheet given to patients when diagnosed. A place for discussion with other sufferers.

I nearly cried when I read about a a poster's son having this at age 4 :(

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This has the recipe as the following (it's much better formatted in the link above, including example options which include everything - its on the bottom of page 2).

Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL)
Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day)
Calcium * 220 to 500 mg/day
Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide)
Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life)
Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose)
Vitamin B 50 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient
Zinc * 10 mg/day
Boron * 1 mg/day minimum, 3 mg/day optimum

This is a bit different from your list.

I also just published an article about using SPG stimulation for refractory CH (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). Worth a read as this corresponds with devices like Gammacore, as mentioned by Peter.

Also read through this thread - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Over the years, people have posted everything from it helping through doing nothing to making it worse, with Hoppy's post potentially explaining why.

KDM,
Do you smoke daily all day or at onset? I'm going to try it just wasn't sure if I should throughout the day or attack? I used to smoke marijuana daily but quit years ago.  Thanks !

I smoke daily but it has only been for the last two years. Prior to that I did not smoke for almost seven years (smoked from age 18-20 too). So at onset I'd not smoked in 3-4 years.

Maybe it's bad for the headaches, but the stress in my mind needs it right now, so even if quitting would help I wouldn't have the strength to do it.

I've never found any sort of trigger for the attacks. They just...happen. Similar time each day that's about it.

Mike NZ wrote on Apr 5^th, 2018 at 5:17pm:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE This has the recipe as the following (it's much better formatted in the link above, including example options which include everything - its on the bottom of page 2). Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL) Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) Calcium * 220 to 500 mg/day Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose) Vitamin B 50 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient Zinc * 10 mg/day Boron * 1 mg/day minimum, 3 mg/day optimum This is a bit different from your list. I also just published an article about using SPG stimulation for refractory CH (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). Worth a read as this corresponds with devices like Gammacore, as mentioned by Peter. Also read through this thread - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Over the years, people have posted everything from it helping through doing nothing to making it worse, with Hoppy's post potentially explaining why.

Ah brilliant thanks Mike I will just get everything.

Whether it helps or not, it's a totally harmless treatment so seems no reason not to give it a try. If anything, my diet is haphazard and lacking in fruit and veg so some vitamins will do me good I imagine!

I don't think I can handle another day of this. Every day it's worse my mind is totally gone. Dunno why I'm writing this here just had to somewhere I guess.

KDM wrote on Apr 13^th, 2018 at 11:55am:

I don't think I can handle another day of this. Every day it's worse my mind is totally gone. Dunno why I'm writing this here just had to somewhere I guess.

KDM- "TOGETHER, WE FIGHT!"

"NEVER GIVE UP!"

-Gregg

No real magic words here, but you can keep doing it as you've been doing it until now and there are options on the table which could help, as people have posted above.

Keep fighting

Thanks guys! Inspirational words there.

I just wish there was a break from pain, I have a headache 100% of the time, morning to night ranging from 5-10 but usually in high range. And it's worse every week, so the situation is beyond hopeless.

I went for a 15 min walk yesterday and it killed me, I was exhausted after. I used to go to the gym, play sports, walk 10 miles a weekend, have a relationship, a promising career. Now I sit in a room at my parents' house, imprisoned and desperately finding ways to use up time, despite the face I have limited concentration and memory ability, desperately trying to eat, since I have little appetite, all while fighting off the slowly building depressive, suicidal breakdown which is I don't think I can hold back forever.

There's little chance that these aspects of a conventional, happy, secure life will ever exist again, since the pain is continually spreading further around the head, more and more severe, as if there is something growing in there. Eventually I'll be confined to hospital I'm sure of it.

I still have some hope but any treatment has usually worked so far, temporarily for a few months, then of course the headaches are worse again. Surgery would likely only work temporarily based on current disease progression.

I am totally screwed but am sort of at peace with it, I would never hurt myself (for now anyway), just destined to carry on with this crazy hyper emotional state, wanting to sleep and wanting to punch walls all at the same time, every day, without any respite. I don't even notice a low-medium level headache anymore, just have the exhausted, depressed, brain-dead feeling. Then I'm like 'oh, there's pain there!'.

Thank you for reading if anyone got to the end. It's cathartic writing it somewhere.

Once I have some money next week I will get straight on the vitamin D regime and let you know how it goes.