Hi. I am Sannie from the Netherlands, a recently diagnosed clusterhead, age 33.

I have suffered from migraines for 24 years now, several different kinds of attack migraines (6-8 on the scale) and also chronic migraine (3-4 on the scale). When I was 27 I had my first ever migraine with aura, my head felt like it was going to explode, searing pain and I honestly thought was having an aneurism. I called my doctor and he said, on the phone without further diagnostic assistance, that I was now also suffering from Cluster headaches. He suggested I pick up Imigran 6mg injections and take those if another attack occurred. Over the years these migraines, or clusters as he said occasionally occurred, but the name never made sense to me because they came on their own, or maybe twice within 48 hours and then would be gone for months. The Imigran injections worked great, as soon as I felt an attack coming or saw the aura, I would take one and the pain would go away in minutes. I would be tired as hell and have very nasty side effects like chest pains and heart palpitations, but the awful pain would go quickly.

Then this year rolled around, noon January 1st I had what I then thought was a Cluster headache, 8am the next morning I had the next one. Both treated with Sumatriptan (my pharmacy no longer carried Imigran, but Sumatriptan is basically the same as you all probably know). The next few days I didn't feel quite right, not myself but also not in a lot of pain. Then came January 9th, the pain started in the middle of the night, waking me up from my sleep. A runny nose, a runny eye and a lot of pain behind my right eye, like someone was driving an icepick through my skull. I've suffered from migraines, but this was not something I was familiar with and it didn't last nearly as long, "only" about 2 hours. I was expecting to feel fine the next day, happy it didn't last as long as I had feared. But then the next day came and again the pain came. I saw a doctor (mine had the day off) and he subscribed Ibuprofen 600mg at the maximum dosage a day, for two days. I didn't feel any pain relief but for the first time in a week, I had a good day the day after I quit the Ibuprofen. I thought I was home safe, I could not have been more wrong. That night, the pain was back.

As this was during the weekend I went back my own doctor this time on the Monday, he noticed this wasn't my normal migraine type and suggested taking the Sumatriptan as he suspected Cluster headaches, which scared me considering the amount of attacks I was having (1-2 a day). I said I thought this was weird because 6 years ago he said I had Cluster headaches already. But he insisted that was what this was given my symptoms. I followed his advice, be it the pill type of Sumatriptan 50mg, not the injections, which he prescribed. Of course you already guessed this, they did nothing to improve my situation. Three days later I went back and he said he still believed this was Cluster headache but would send me to the ER for oxygen treatment. He called the on call neurologist, who on the phone agreed with his diagnosis and told him to send me over.

The oxygen helped, somewhat, as I was and still am, suffering from constant pain between my Cluster headaches but not a Cluster headache at the time of the oxygen treatment. According to the neurologist my constant pain is because of the stress I am experiencing and my normal migraines butting in. My average pain is anywhere from 5-7, the attacks from 8 upwards, with Cluster headaches now getting progressively worse.

The neurologist prescribed me Verapamil at 3x80mg a day and said not to worry "Cluster headaches are relatively easy to treat, we just need to find you the right medication and dosage". I felt elated, a relatively quick diagnosis and a treatment and I was "easy to treat". I went home feeling happy and hopeful.

Along the way, I am now 9 weeks into my cluster, I was eventually raised to a dosage of 560mg a day. My heart would slow, I would nearly faint, I felt like I was choking and forget about going to the toilet, my bowels would NOT move. Last week the neurologist said I need to stop the medication slowly and then take nothing (!!) for 4 weeks after that. I asked for oxygen at home, which he agreed to, but I have to wait for a lung exam later this month to see if I can even get it.

This Monday I had my first attack of the week and took a Imigran FTAB 100mg, my second attack of the week came Tuesday night after a nap. After an hour I couldn't take it anymore and took a Sumatriptan injection. The pain got worse (!!). I couldn't believe this was happening and I literally couldn't even breathe the pain was so bad. My boyfriend was sat with me and I could hear his fear, asking me what to do, probably thinking I was dying. And I thought the same thing. After 20-30 minutes the pain went down, but no farther than it had been before the injection, I was gutted, exhausted and scared. And I still am. What is the injections make it worse again next time, I don't know what to do.

Sorry to be so long winded, but I've not been able to speak to anyone about this who I feel actually knows what I am talking about. My mom and my boyfriend try, bless them, but they honestly have no idea how I feel, how could they. I just really needed to get it off my chest, I hope that is ok 

So in short, I was diagnosed in January, have been suffering my Cluster since January 9th of this year and have no earlier experience with this pain. What has happened so far?

Prophylactic
- Verapamil 80mg pills, at first 3 times a day, later 7 times a day (little effect other than horrid side effects).

Attack meds
- Sumatriptan injections (tried them once, scared me to death because the pain became worse).
- Sumatriptan 50mg tabs (worked slowly, no point).
- Imigran FTAB 100mg tabs (work, 20-60 minutes until the pain subsides, but not allowed more than 1 a week by my neurologist).
- Ibuprofren 400mg tabs (take them for my normal migraines, but only allowed once a week).
- Ibuprofen 600mg tabs (tried them, did nothing, stopped after 2 days and was not allowed more).
- Rizatriptan (tried it, didn't do anything within the pain window, quit).
- Oxygen (sort of worked in the hospital, went from my constant 6,5 to a 5 within 20 minutes, but waiting to be examined to even be allowed it at home).

My current state
- I haven't worked for 9 weeks, hardly leave the house, have had very, very few "good" days since this started.
- My attacks started at 7-10 times a week during my first weeks, after I started the Verapamil I did notice those becoming less, but more and more normal migraines, I am currently at 2-3 Cluster headaches a week, but they are much more violent than the first weeks were.
- I am quitting the Verapamil as suggested by my neurologist, waiting for the oxygen examination and allowed 1 Ibuprofen day and 1 Sumatriptan or Imigran tablet or injection a week. My current Verapamil intake as of today is 2 80mg tablets.
- I am exhausted, constantly have migraines and shadow pain, lonely and having a really hard time not crying my eyes out all day long.

I realize I should be thankful I was diagnosed so very early on and I am, really, but I just can't believe that on top of my chronic, attack and aura migraines I now also have this. I feel like my body has totally abandoned me and am just hoping for the pain to stop every second of the day. I've never felt the need to contact fellow sufferers before, odd as that may be after so many years, but earlier this week I just broke and no longer know what to do or how to live with this.

Thank you for letting me tell my story, if you managed to read all of it I applaud you and thank you. Any advice or support in any way is welcome, I am just very scared for the future right now.

Sannie

Welcome home, Sannie, and my heart goes out to your Mom and boyfriend for being so caring, so understanding, and trying so hard to help. We call them Supporters and love them to bits.

Hard to believe but it's probably more difficult for them that it is for us. The desolation they must feel when they want so much to help, and I truly believe they do it harder than we do.

One time when you're feeling OK, please give them a kiss from all of us here. They're special people and we love them.

All headaches are horrible and the most important thing is to work out just what sort of headaches you have. (I'm astounded that CH was diagnosed over the phone, and then treated so poorly.)

We offer no answers here, but on a good day can make suggestions which may lead to a better outcome for you.

Truly we care, because we know the hell it can be, so talk to us and kiss mom and beau.

There's better days ahead,

Brian down under.

Hi Sannie and welcome

I found it hard to read your posts as it brought back so many memories of the experiences I had when I knew I was having these incredibly painful headaches and for so long the doctors just didn't know what they were. It is so easy to see the effect this is having on you plus your supporters (who are doing just wonderful). It is never easy supporting someone you love who is in pain, especially when you can't truly comprehend what they are going through. And I hope that my supporter never gets to experience the pain herself.

Chronic migraine isn't fun by itself as I know and coupled with CH is quite a complex combination. There is a good degree of overlap with what medication works for both, but for some there is a conflict, e.g. propanolol is a great migraine preventive but you can't take it with verapamil which is a great CH preventive.

There is also the background headache that you talk about too, this could be migraine or it could be something else.

When headaches get this complex you really do need to work with a headache specialist who has extensive experience in dealing with the complexity.

For the abortive medications, sumatriptan / imigran tablets and ibuprofen can help with migraines but aren't helpful at all with CH.

Rizatriptan (maxalt melts) can work with CH, so it is interesting that it doesn't with yours. And the response to sumatriptan injections isn't typical as with CH it'll normally kill it off in about 5 minutes.

So all grounds for seeing the headache specialist to get a definitive diagnosis on which headache type(s) you have and what is the appropriate treatment for you.

What I would do is to start a headache diary if you haven't already. Note for each headache details like the date, time, duration, pain scale, symptoms, medication used, possible triggers and anything else that may be relevant. This can help with the diagnosis.

I'd also try to avoid common headache triggers too like alcohol (CH trigger), caffeine (migraine trigger) and chocolate (migraine triggers) plus anything you know might make things worse.

Whilst we can't offer an instant fix, we can offer support and advice, so you are never alone. Ask your supporters to look in here too, there are CH supporters here too.

And keep us updated.

SannieK wrote on Mar 13^th, 2015 at 7:38pm:


This highlighted part isn't normal and I'd follow this up with your doctors. Triptans, like imigran, narrow blood vessels and the heart palpitations / chest pain could be related to this. Please do get this checked out before using the medication again.

For CH triggers, alcohol is a strong trigger for most people, but otherwise there is some variation between people, although things that people report include solvents, getting over tired, getting hungry, getting too hot and stress (high stress, low stress or transitions between high and low). But you need to figure out your own.

With CH there are example where there seems to be a very weak genetic connection, but for most people they are the only person in their family with CH.

For migraines have you tried any preventives, like propranolol?

Also be very careful, as you seem to be, with frequent use of pain killers as there is a risk from rebound headaches just from using pain killers. Narcotic pain killers are generally to be avoided too.

It is possible to get auras with CH, not just migraines.

For oxygen info, check out - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or - it has all you need to know about how to use oxygen effectively.

Vitamin D3 has helped over 80% of people using it based on feedback, with some people, myself included, going several years CH pain free.

Hi Sannie,  It does say in the imigran information leaflet that it may cause chest pain. However I am very surprised to hear that the injection actually made the pain worse.  You really should see a headache specialist as there are many headache types that mimic CH but they respond to different meds. It's possible that you have something else.

You say the oxygen helped somewhat, but it is well known that the ER do not administer it correctly for CH. And if you had oxygen treatment when you were not actually having a CH attack it will do nothing. Ask your doctor to prescribe a home supply for you. But, you must have a flow rate of at least 15 litres per minute (more is better) and a non re-breather mask. If you get either of those wrong it won't work, and you need to use it at the onset of an attack. It's a brilliant abortive when used like this.

Forget ibruprophen. Ordinary painkillers, even morphine, will not work for CH. You just risk stomach problems, and spend a lot of money, with no benefit.

The constant pain between attacks is what we call shadows, and fairly common. If it's caused by stress then the ibuprophen may help with this, but it's more likely to be a continuous, low grade attack. Your neurologist has some strange ideas about the amount of meds you are allowed. Sumatriptan tablets can be taken 100 mg per day - not one per week, and I take 600 mg of ibuprophen 3 times a day for weeks at a time (not for CH), so only being allowed once per week is a bit rediculous. Another reason to see a specialist.

Here is something you could try. At the first sign of pain, chug down a red bull, really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick so any energy drink with those ingredients will do - monster, rockstar, redbull etc. It doesn't work for everyone but loads of people do get some relief from it. Worth a try.

By the way, Sumatriptan IS imigran. Sumatriptan is just the brand name, but the drug is imigran. It may also be called imitrex depending on which part of the world you are in.
Maz.

Hi everyone,

Thanks for your new replies. Today I had some varying shadow pain I guess you would call it, as I do basically every day, but felt well enough to go to the supporters meeting. There was also an official speaker, Dr. Emile Couturier a very well known Dutch specialist as I have found out today who has aligned himself with the Dutch association of CH sufferers. He gave a very enlightening reading and I was able to ask a question as did my partner. Sadly I went into the ugly cry half way through my question, I get very emotional about this all still, but he still answered none the less.

A lot of things I have seen you all write here these last few days were confirmed. I need to try oxygen, in my country the current dosage is 7liters a minute, but the doctor did say this can be raised to up to 12liters a minute. The problem I have found out is not just that my neurologist says I can get it but the lung specialist refuses to just order it, but that Dutch companies offer you the wrong breathing mask. Not just the specialist at the meeting but also all people there who use oxygen for relief complained about this. The patients association has been trying to get this changed or find a way to resolve this problem for themselves, but are getting no where, which is very frustrating. One woman there happens to work in a hospital as a physiotherapist and she was lucky enough to get a proper rebreathing mask with a 3liter bag attached, she says we all need one of those but it's terribly hard to get them here. I was also told there that the oxygen given to me in the hospital was pointless, as I wasn't having a CH episode at the time and also as I have now found out, the mask given was wrong.

Another thing someone in the group asked the specialist there was on the D3 vitamins people speak of here. He did say he himself tried it with some patients after one of his own patients said it helped them. Half said it was successful, the other half had no effects. I was told to have a test done before even attempting any vitamin D supplements in the suggested doses, he also spoke of 20.000 UI (?), I am unsure whether my neurologist will order a test like that, as the specialist there said many doctors in my country do not know of or believe in the treatment with D3, but I will try.

People in the group and the specialist were shocked I still didn't have my oxygen and was allowed so little pain relief (Sumatriptan SC or Imigran FTAB) by my neurologist and suggested I go back to my general practitioner and insist on oxygen now and ask for more medication as I slowly reduce my Verapamil intake.

Other people there, fellow sufferers did conform that sometimes the pain gets worse, but my increase seemed severe, no one knew why.

I realize the Ibuprofen does not work for my CH and I don't take it for that, I take it for my migraines, which is the only thing over the past 24 years that I have found works at least a little for them. As I have so much pain between my CH episodes that I relate to my migraines, I sometimes just need the Ibuprofen to have a day that I can breathe.

I have also heard people about the red bull or even extremely high doses of coffee (caffeine). For me however those are all very active migraine triggers. Within 10 minutes I will have a mayor migraine. Of course those aren't as bad as the CH episodes, but I'd rather not help myself into any pain at all.

I have tried preventative medications for my migraines when I was a teenager, or at least under 20. But nothing I was ever subscribed worked, most things just gave me horrible side effects like a 60 pound weight gain in 6 months and depression. I am sure new medications have seen been found that may work, but when I was last treated for my migraines in 2009 I was sent to a therapist to help me deal with the fact that the specialists then said there was nothing more they could do about that pain and they wanted me to learn how to live with the pain. By then I had been a migraine sufferer for 18 years and I had already pretty much found my way, I've just lived my life since then, obviously with pain and limitations, but I was tired of always being the patient and being poked and prodded like a guinea pig. When this pain started however, my need for help came back.

Everyone today that I spoke to suggested I see a real specialist, some names were suggested but mostly people said go back to your general practitioner and demand to be sent to a headache clinic near you, don't take no for an answer. My country has 36 of those centers, two are within an hour of my house.

Today I met with a lot of very brave people, mostly chronic patients and a lot of supporters who stand by them in their darkest hours. I was very often brought to tears and it was a very emotional and exhausting day. But I am very glad I went. I learned three things today, 1. Be more assertive, you are your own best advocate, 2. Find your own pain patterns (like I did years ago with my migraines) and 3. Use what works for you once you find out what that is because every patient is different. I was given a lot of brochures, pamphlets and magazines to read and some of you have sent me long PM's. So I have a lot of reading to catch up on and a lot of learning to do, I am a little overwhelmed I have to admit.

Going to sign off for now, but thank you for your support. I hope you all have a PF day (the more the better).

The background pain may be shadows, but it could be something else too. Again this is where the headache specialist needs to figure everything out.

For oxygen there seems to be a link between the higher flow rate and the time to abort. I've experience this myself, aborting over twice as quick at 25lpm as 15lpm which means less pain and less oxygen used too.

There are also people here on the forums who have used welding oxygen when they can't get hold of medical oxygen.

You should be able to import a non-rebreather mask from the CH.com store - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or - I've a couple of these and they work really well.

Oxygen is only useful when we're actively having a CH and then the sooner you're on it the better too.

Caffeine has an interesting interaction with headaches. Like you it is a strong migraine trigger for me but if I'm about to have a migraine then caffeine (Red Bull) can help make it go away or at least decrease the symptoms. I've not had CH and migraine active at once, so it could work to chase the CH away and bring on a migraine or it might not. You could experiment to see what works for you.

The advice you got about not taking no for an answer is excellent advice. With complex headache issues just sitting back and letting doctors do things at their pace gets you nowhere.