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Ketamine treatment for cluster headache (Switzerland)

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#1 Fri, 10/01/2020 - 09:13
beansprout
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Last seen: 3 months 3 weeks ago
Joined: 26/06/2019 - 15:45

Ketamine treatment for cluster headache (Switzerland)

Good morning everyone. smiley

I'm an episodic cluster headache sufferer in the midst of my regular winter bout, but am finding that my sumatriptan injections are becoming less and less effective.

I've also just moved to Switzerland, and am due to see a new cluster headache specialist next week (Livia Granata in Zurich). According to her website, she offers a new experimental treatment (Ketamine IV) for episodic and chronic cluster headache that is not effectively treated by first-line treatments. Has anyone else had experience with this treatment? I am considering asking for it but worry about the side effects, though to be honest the sumatriptan is pretty horrible too. 

Also, if anyone has heard of any cluster headache support groups like OUCH in Switzerland then let me know. I'm finding it difficult to find advice on available treatments and doctors.

Best wishes and Happy New Year

Daniel - Episodic CH

Tue, 14/01/2020 - 12:43
Val
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Last seen: 3 days 23 hours ago
Joined: 21/03/2012 - 15:16

Hello Daniel 

Dr Granata is one of the authors of this study into ketamine for cluster headache, this is an abstract, but may give you some info on the treatment.  https://www.ncbi.nlm.nih.gov/pubmed/27067225  

It is not yet used or licensed in the UK for CH.  Recently in the UK, a new drug called galcanezumab was licensed for migraine, and a study is ongoing into a similar type of drug for cluster headache.  The treatment would entail an injection once a month - what bliss that would be!  

As a long term user of sumatriptan injections, I tolerate it very well.  When first using it I got a tightening in the chest and felt a bit nauseous, but those side effects faded as time went on.

Ketamine is an anaesthetic drug and has quite a list of possible side effects, info here:  https://www.rxlist.com/ketamine-hydrochloride-side-effects-drug-center.htm.

But of course I'm not a doctor!  They may use a smaller than usual dose in the treatment of CH.  I wish you well and please keep us posted with how you get on. 

Best wishes

Val. 

Tue, 14/01/2020 - 13:00
beansprout
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Last seen: 3 months 3 weeks ago
Joined: 26/06/2019 - 15:45

Thanks Val. It is good to hear that you found fewer side effects from the sumatriptan over time. I have only been using it for the past few months so maybe need more time to adjust to it.

If I end up trying any interesting new treatments then I'll give an update.

All the best,

Daniel

Daniel - Episodic CH

Thu, 06/02/2020 - 15:03
beansprout
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Last seen: 3 months 3 weeks ago
Joined: 26/06/2019 - 15:45

Hi everyone

I decided to go ahead with the ketamine treatment and wanted to share my experience. Although it is still an experimental treatment, it is becoming more widely used (including for other conditions such as depression) so the following impressions might be useful for future readers of the forum if they are offered the chance to try it.

Ketamine IV infusion was offered by my neurologist as an alternative to traditional verapamil and steroids . The recommendation is to have the treatment immediately as soon as a cluster cycle starts (for episodic sufferers, though it is also used for chronic sufferers). Three infusions are given in a row (for me, this was Wednesday, Thursday, Monday). If successful, the treatment should prevent headaches for several months. For some people, the headaches are not totally prevented but become less painful. The idea then is to have one subsequent top-up infusion the next time they start up again.

The IV infusions were performed by an anaesthetist in the clinic. I was advised not to eat for four hours before the treatment, and not to drink for one hour before. For the first treatment, the anaesthetist explained the procedure and what to expect. I lay down on a trolley and he attached the IV. First, propofol (another anasthetic) was given, which makes you feel sleepy/relaxed within seconds. The ketamine itself is combined with other medications to avoid side effects such as nausea. This is then infused slowly into the IV over ~30 minutes.

Once the first infusion started, I immediately began to feel dreamy or 'trippy'. I would compare the feeling to the dissociation you feel when having an intense daydream where you forget where you are and what you are doing, however you do remain conscious throughout. I also experienced some mild hallucinations - such as the ceiling tiles moving around and time becoming very slow. It would not have been possible to stand up and talking would have been difficult. However, despite the 'strangeness' of the experience, I would not describe it as uncomfortable. In fact it was quite pleasant and relaxing. The anaesthatist stayed nearby and from time to time checked my blood pressure and, if necessary, gave a topup of propofol. Once the infusion finishds, I started to feel 'normal' again within 5-10 minutes however it took longer to fully recover. After around quarter of an hour I was able to sit up, and with the help of a nurse walk carefully to the sitting room to have some water. After sitting for about another 30 minutes I felt well enough to leave and take the tram home, however I did feel a bit sleepy/disoriented for several hours afterwards and am glad the treatment was late afternoon as I wouldn't have been able to go back to work. That night I had some trouble sleeping, but felt pretty much fine the next day. 

The subsequent treatments were performed in essentially the same way but with slightly higher doses. During the third treatment, I choked slighly and this made me feel anxious and panicky for the rest of infusion, for which the doctor gave a bit more propofol to calm me down. Once the infusion was over, I continued to feel anxious and unsettled for the rest of the evening, and the experience was certainly unpleasant (but still better than a cluster headache!). I would strongly recommend avoiding sources of stress and trying to relax during the treatments to avoid this sort of thing - close your eyes, deep breaths etc. I'm new to the city and barely know anyone, but if you have a family member or friend who can sit with you and drive you home afterwards then this would certainly help. 

Since the treatments a couple of weeks ago I haven't had any more cluster headaches. I can't be 100% certain that the treatment worked as my clusters tend to be quite short (a 2-7 days, then nothing for a few weeks), but fingers crossed that this will keep them a bay for at least a few months.  :-) 

Daniel - Episodic CH

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