Atypical (light) episode vs heavy prescription drugs

[KenH]

Hello everybody. I’m 37 and I’ve been suffering from episodic cluster headaches since the age of 24 or so. (Sorry for my incorrect English from time to time - my mother tongue is Dutch.)

In comparison to some other cluster heads (don’t mean to be harsh!) I’m pretty lucky having only one episode each year / year and a half. In these episodes I have 3-5 attacks a week, all taking off at night. I have all the symptoms: unilateral pain, neck pain, ear pain, eye pain, droopy eye, runny nose, can’t sit still…

For years I wasn’t diagnosed properly (migraine, tension headache, sinus problems…) and I didn’t take any abortive drugs (except of not working pain killers like Paracetamol and Ibuprofen). I tried Verapamil two or three times as a preventive measure, but we never adjusted the dose properly, so I always took 240mg/day. Sometimes it seemed to help, other times it didn’t. It’s difficult to say because sometimes it already can have been remission starting, sometimes I started to take them late in my cycle, I forgot to take them a lot… So I’m not sure if it’s effective for me or not.  Drinking alcohol has always been a trigger for me during episodes. 

For about 4 years now I’ve been taking Zolmitriptan (5mg) orally to abort attacks - combined with coffee or red bull. It takes a while to work (30-45 minutes), but I can survive. My clusters never were a pleasant thing to have, but I managed to cope with them - although I was exhausted at the end of every episode . I went to a neurologist for three times, but I always went when I was out of an episode (so we never got far in trying out new things).

 

At the moment I’m having a strange episode: 

When it started six weeks ago I stopped drinking alcohol immediately. As a result, I only have 1 ‘real’ attack a week. I’m having a lot of shadows, and sometimes ‘minor’ attacks (kip scale 3-4) of which I can get rid of drinking coffee, massaging neck and head, pressing the temple area…

But on the other hand, for the first time in all these years the idea of “the beast” that can “attack” at any time (even though I only have it at night) is really frightening for me. I’m anxious all the time and I’m unsure of how my life / relationship / career is going to evolve. Even though I’m in the “best” cluster of my life (painwise/number of attacks), it feels like it ’s my worst ever in terms of anxiety.

Maybe important to mention: I had a burn out last year (working again since seven months) and in general I’m kind of an anxious type. I’m seeing a (behaviorist) therapist for this, but it takes time to work on this.

Because of the atypical episode and the anxiety surrounding it, I went to see a neurologist again. My previous neurologist is an hour and a half drive - that’s pretty far in Belgium :-) - so I went to see an other neurologist which I could find on the internet who is also specialised in cluster headaches. I had a nice meeting with him, and we talked about the possible (but not proven) connection in the brain between cluster headache, anxiety and depression. He wanted to interrupt both the clusters and the anxiety so he wrote some prescriptions for preventive medication.

At first I felt some relief because of somebody listening to me, and wanting to help.  But in retrospect I don’t like at all what he prescribed:

Lithium 250 mg

Deanxit (Flupentixol) (anti anxiety)

Also he said something about “having to prevent the clusters well to prevent them of getting chronic” (??? evidence ???).

In my opinion Lithium is overkill (for me) and too risky on the long term for the few attacks I’m having. And the anxiety is something I would like to learn to live with instead of sedating it. Instead of taking such destructive drugs I would rather sit out this episode without taking any (except the zolmitriptan of course). And then prepare well for the next episode.

But I feel bad and guilty for having to/wanting to ignore the advice of somebody who is specialized in treating clusters.

All comments or suggestions, similar experiences are welcome!

(On the atypical cluster - the anxiety - the prescription drugs - ignoring a doctors advice...)

[CHfather]

First of all, you don't seem to have oxygen.  A proper oxygen setup will reduce your abort time very substantially, without medical side effects.  Knowing you can abort most attacks within 10-15 minutes might help with the anxiety, too.  Any neurologist who doesn't prescribe oxygen is not an expert.

The idea that if you don't treat your episodic CH properly it will become chronic is, I believe, completely ridiculous.  Talk about making you anxious!  That just seems like a very uninformed thing for the doctor to have said. 

Lithium is recommended to be prescribed only for chronic cluster headache, because of the side effects and because it has been shown to cause significant rebound attacks when you stop taking it.  The article, "Treatment of Cluster Headache," on this page would be worth reading for you, I think:  https://clusterbusters.org/medical-research-reports-studies-case-reports-links/

I know of a person who had CH and also anxiety and was prescribed lithium.  I don't remember the dosage.  While I'm sure that lithium helps many people with psychological conditions, for this person it seemed to have no effect on the CH and it seemed to make her more anxious just to know that she was taking lithium, if that makes sense.

Triptan pills are usually not effective for CH, because they take too long to work.  Maybe your attacks would end in 30-45 minutes without it.  A sensible doctor would prescribe at least the oral spray, and probably the injections.  Not everyone thinks that triptans are a good idea, but if you have oxygen you could use the triptan for breakout attacks that aren't helped by the O2.  The only way the pills seem to help people, as I underswtand it, is if they know what time their attacks usually come and take the pill an hour or so before that.  That's what I am remembering. 

Many people find that taking melatonin at night helps with attacks.  Since as I understand it melatonin is a prescription drug in some countries, you might not be able to get it.  If you can -- start at 9mg/night and work up from there.

Please consider the D3 regimen described here.  It might be kind of daunting to read the information even though your English is excellent, but the basic ingredients are listed in a table and that's most of what you need to know.  Because it is so effective at preventing cycles or at least reducing how bad things are during a cycle, I think it has reduced many people's anxiety about their cycles.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

With all of that said (suggesting that treating your CH more effectively is likely to reduce your anxiety), anxiety and fear are things that many people with CH experience. And, yes, also depression. It has effects that are very understandably like what we call here PTSD -- post-traumatic stress disorder.  Others might talk about how they cope, but I will say again that there are basic things you can do to make the experience less terrible.  Some people find that psilocybin ("magic mushrooms") has had a very positive effect related to their emotional symptoms (and it also actually treats CH).  You would have to decide whether you want to go that way.  I'm not recommending it for you; just passing along the information.

 

 

 

[didgens]

In the end of it all you are in charge of you ,,  follow your gut ,, if you dont like what happens then take their advice.  My son is also episodic ,, and although the doc prescribed imitrex injections he has never used one. He knows they are there ,, and im afraid if we go down that rabbit hole it will make things ultimately worse or trigger chronic CH.. no data to support this ,, just a gut "MOMS" feeling,  He uses O's (oxygen) to abort ,, and when not available a hot shower or walking around.  I have seen him get some pretty bad ones early on ,,but since treating with O's and recognizing one comming on and downing a Red Bull, Coffee or similar he manages them pretty well.  So do you you think is best/safest for you. 

[KenH]

Thank you both for your many advices! 

For the next episode I'll ask for oxygen. Don't know why three different neurologists haven't been prescribing it!  It is possible to get in Belgium, that I know for sure.

Concerning the triptan pills: that's a personal choice. The doctors already warned me that they don't kick in that fast - but injections and nasal sprays are very expensive in Belgium (despite our good health system). For my frequency, when I take the pills in time combined with caffeine, it is OK for nightly home situations - though I would prefer oxygen for those cases. And maybe some injections/nasal solutions for on the go.

Melatonin and D3: I'll check for that asap. Melatonin is free of prescription since 2016 (funny because in the US it is free to buy in the supermarket for ages!). It makes sense for me because in the past I had some troubles falling asleep and disturbed REM-sleep. I also messed up my biorhythm pretty well in my college/university years  - so maybe there is a connection there.

Forgot to mention in my previous post: I tried some microdoses of mushrooms a few times, but didn't follow the cluster buster method yet. So still something to try out. I still have some mushrooms somewhere (you can still buy them in the neighbouring Netherlands). 

Regarding my anxiety: writing a post here did well to it, as did your answers!!!

The Lithium: I'm not going to try that because of the side effects and risks. I would consider it when I wouldn't have any other options, or become chronic. 

I don't know what went wrong with the last neurologist. He has a good reputation (in general) and treats a lot of (?) cluster patients. But especially chronic cases - maybe that's part of the problem. Also it seems like he was more eager to treat my depression/anxiety symptoms - as if it's possible to diagnose me on that in ten minutes  (yeah right!)

I still don't get it because we have a very good health care system, well trained physicians, good hospitals... I think it's the combination of a complex syndrome combined with small patient populations so a lack of critical mass.

Thanks again!

[ChronicMigraine]

Ken. When injections are too expensive but you can get the oral pills, consider getting the generic sumitriptan 100mg capsules. They are not coated, so you can first of all cut them in half to 50mg, then with a 50mg half pill go ahead and grind it up into powder. Mixing it with a small amount of flavorful liquid (the taste of this medicine is an assault on your taste buds almost to the level of the pain is on your head. It's AWFUL! Mix with something strong). 

 

Doing this significantly reduces the uptake time, to about 10 minutes at the longest. I've done this quite a lot when an injector is unavailable. Also this medicine is VERY inexpensive (at least here in the USA). It's $80 for the brand name treximet, and $5 for the generic sumitriptan. 

[KenH]

Thanks! In fact, I have a prescription of them, but was indeed worrying that they would take too long to kick in  - the zolmitriptans I normally take are melting tablets, but the prescripted sumitriptans (100mg I think) aren't. 

Maybe I could sniff them?  (just joking!)

10 minutes is fine for me. Even the melting zolmitriptans take 30 minutes (faster with red bull of course).

I think I pay like 1,5 - 2 euro's / pill (box of 24).

Cheers!

[spiny]

Welcome Ken! Sorry you need to be here, but very glad that you found us.

I have found that just knowing what to do and when is great for reducing anxiety. Knowing others are in the same boat helps too!

With your interrupted sleep pattern, I would definitely go for the Melatonin. One physician, can't re-call his name says 25mg at the max. I have taken up to 30mg/night. I space them out and only take the third if I am waking constantly.

It is a crime that this condition has had so little funding or attention. It is very debilitating. All medications are migraine 'hand me downs'. However, there is hope on the horizon with the new trials getting set to begin over here. Trials of psilocybin!! It has been shown to be very beneficial for CH and PTSD. We are all pretty excited about it.

I hit the caffeine for the persistent shadows. It helps. And I highly recommend the D3 regimen. Vitamins worth taking. You can also hyperventilate and exhale with force ( think crunch) in lieu of O2 until you acquire it. That can actually help. You want to force out all the CO2 from your system - ergo the forceful exhale.

Stay in touch!

[urs Brasil]

KenH

It seems you are european too and asking yourselfe why their health system can't deal apropriately with cluster.

In my experience there is a huge mental difference between europeans and americans. Where europeans are not much willing thinking and acting out of the main stream which defenately is essential in order to figth the beast.

Americans seem to be quite different in mentality by really testing, challeging and questioning facts on the table.

So lets say much more independent where the others just follow the herd without questiong much why. Just belifing in godfather in white (an old european, bad, habit...)

4 his type of inovation/behavior you must have an eye towards the states...

 

Urs

 

[KenH]

Hi Spiny, thanks, you're right. Writing it down and talking about it with other clusterpeople helps a lot. "You can't control the situation but you can control your response..." hits the spot for me!

At the moment I'm trying to tame the beast with microdoses of magic truffels (following 'the method') and I look forward to the outcome. I will soon ask for melatonin too, when I see my doc - the ones free of prescription are too soft: 0,3 mg  - makes a lot of sense to me with my delayed pattern of sleep.

Urs, interesting train of thoughts... Regarding Europe vs the US I'm not sure if the one or the other health system is better than the other. In Belgium we do have a pretty good health system, OK in terms of quality and service, and very good in terms of costs. I didn't pay much for my MRA scan for example (without having to bring in a private insurance). Also we have a few fine universities and high end hospitals. But maybe there is a lack of funding for investigation (read: money to earn?) on the subject. What I do know is that there aren't tons of good/real headache specialists among neurologists. And the few specialists sometimes work alone on the subject and don't have enough cases and figures to compare with.

In comparison to the US which has differences between states, Europe is still a Tower of Babel: lots of different languages, health systems, government structures,... That's all not in favor of data and knowledge exchange.

In terms of out-of-the-box thinking I think a lot of Belgians perform well too. But I can't speak for all of them, let alone for all "Europeans"  But I do have the impression that the medical world is a little (and maybe very) conservative, and not eager to try out or experiment...  (Although my doc was willing to experiment on me with the lithium )

[MoxieGirl]

Hi Ken,

I have a saying. 'No two cluster heads have the same symptoms, and just as soon as you figure your's out, it changes.'

in my most humble opinion and experience, the best experts on clusters are right here on this board. You won't find anyone on the planet who understands the beast better, and knows how to kill it quicker. Or, at least put it in chains for a time. I was very fortunate in that I had a GP who had a friend with CH and knew exactly what I was describing on my first visit about it. She was also willing to let me try what I wanted, and fully supported me. So when I said I was weening myself off Topiramate and was going to take magic mushrooms, she said 'cool'. (or something to that effect, probably 'OK')

It also always amazing me how the medical experts don't know the basics - oxygen + energy drink. Simple. The D3 Regimen is great, well worth trying. 

I micro dose with mushrooms. Usually take about 0.2 grams a day. It can take 5-10 days for enough of it to build up in your system before you notice an effect, so be patient with it and be consistent. Don't miss a dose, and be aware of it not working at all if taking certain medicines, like triptans. I started with the typical weekly busting of shrooms and seeds, and that worked great. But I like how I don't get any trip with the micro dosing. When I'm in the mood for a trip, a larger dose is cool. But mostly I just want to manage the attacks (I'm Chronic btw). 

I'm sailing to Belgium in August. I live in England and have a 7 day sail booked to cross the channel, go to France and Belgium and back to the UK to get my coastal skipper certificate. Really, really can't wait. 

MG

[KenH]

Hi Moxie, thanks for your reply and info about your busting experciences.

What interests me a lot: how do you manage your cluster headaches while sailing?