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Help - Holiday

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#1 Sun, 06/10/2019 - 16:31
Mali
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Last seen: 19 hours 19 min ago
Joined: 15/09/2019 - 17:36

Help - Holiday

Hi ---- 

I have recently been diagnosed with CH. I was prescribed prednisolone 60mg titrated every few days to 4mg & had a nerve block injection. Unfortunately, neither treatments were successful.

I have HF oxygen & have been prescribed sumatriptan. Additionally, I am currently prescribed 360mg verapamil p/day.  I am still experiencing cluster attacks but no where near as painful as a few weeks ago. I am also prescribed melatonin which has effectively stopped the evening attacks.

I have also been referred to another consultant for a gammacore.

Prior to developing CH I had booked an island hoping trip to the Maldives which, is in November. I'm a bit anxious my condition worsening if I decide to go on this trip.

Can anyone please provide any advice or their experience of travelling with CH? 

I am a bit concerned about increasing my verapamil at the moment due to the headaches and tiredness I have been experiencing. But I welcome any advice, as you can probably tell I'm still educating myself on this condition.

Thank you for your time!

 

 

 

 

Mali 

Tue, 08/10/2019 - 14:08
John S
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Last seen: 1 week 2 days ago
Joined: 26/02/2014 - 14:41

Hello Mali,

i can give you my own experience having been a long time sufferer although my circumstances don’t exactly match yours. 

i am an episodic suffer, at one time my clusters went on over 10 weeks once a year then reduced to 5 weeks twice a year. I have never taken Preventatives ie verapamil but the abortives of high flow oxygen and Sumatriptan injections work really well for me and abort the attack very quickly.

i have been in a cluster period when both going on holiday and when on holiday many times. There was no difference in frequency or intensity of attacks for me, some will say hot climates don’t help. I always took a good supply of Sumatriptan injections with me, including one in my hand baggage for the flight. Some will recommend a doctors letter, I never bother , the prescription details are stuck on the box. 

i understand some have arranged oxygen abroad, I never have but Val from Ouch has good expertise on this.

lastly an ice cold (non diet) energy drink such as Red Bull when drunk really fast can abort an attack and has worked for me a couple of times abroad.

Thats the extent of my knowledge but I suggest you give the Ouch helpline a ring who will no doubt give you better advice than I can and enable you to enjoy your holiday.

Good luck

John

 

 

 

 

Tue, 08/10/2019 - 20:10 (Reply to #2)
Mali
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Last seen: 19 hours 19 min ago
Joined: 15/09/2019 - 17:36

Hi John,

Thank you for taking the time to reply, I appreciate it!! 

Mali 

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