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Newly diagnosed

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#1 Thu, 28/06/2018 - 20:04
SarahJ24
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Last seen: 1 year 3 months ago
Joined: 28/06/2018 - 19:19

Newly diagnosed

Hi,
So I suffered briefly 6 years ago with suspected CH and almost forgot them/blocked them out. Unfortunately I have been suffering immensely since the 6th june trip to a n e and various trips to gp. They gave me indomethacin 3 times a day and sumatriptan tablets for when an attack happened they also started me on topiramate. None of these have had any effect and I am pretty much house bound or have to go out accompanied. Had my Neuro consultation today which confirmed I am suffering from cluster headaches. Consultant has prescribed sumatriptan injections; 100% oxygen and verapamil but I have to wait for the GP to get the letter. During all this I am currently off work sick (I work in a school). Just wondering what everyone else's experiences were with these meds?
Thanks
Sarah

Fri, 29/06/2018 - 16:26
Braders
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Last seen: 2 years 3 months ago
Joined: 31/01/2017 - 15:42

Hi Sarah.  Sorry to hear about your ordeal. Ive been a chronic sufferer for approx 10years. I was undiagnosed for 6years. I was prescribed all the medication you have mentioned, but only Lithium tablets, high-flow oxygen, and sumatriptan injections have had any effect. The sumatriptan injections stop my attack within 3-5mins which is a blessing from god lol. I have never had any sife effects fom Sumatriptan, although during the few minutes before it takes effect it can make me feel abit queasy and sick. A small price to pay for stopping an attack dead in its tracks i must add!  Oxygen is great, but only if you catch the attack early, otherwise its time to hit the injection. Since being on 600mg of lithium twice a day for the last 18mths my amout of attacks have halved from 12 to 15 attacks in 24hrs, too 5 to 7 attacks in 24hrs. I now get 3hrs unbroken sleep a night, as opposed to 1hr unbroken sleep. Good luck with your medication,  and congrats for getting correctly diagnosed, that is so so important.

Regards Brad 

Brad P

Fri, 29/06/2018 - 18:32
SarahJ24
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Last seen: 1 year 3 months ago
Joined: 28/06/2018 - 19:19

Thanks from reading i feel very lucky and blessed at the quick diagnosis and the treatment I've received from a n e and gp. I am a bit unsure as to how the next bit works though, the consultant is sending a letter to my gp with what he want as treatment and next steps I assumed the Dr would just ring me when they received the info but when I picked up my sick note they said I had to request it?

Fri, 29/06/2018 - 19:20
Braders
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Last seen: 2 years 3 months ago
Joined: 31/01/2017 - 15:42

I would imagine your gp will call you to attend the surgery once he has recieved the relevant information from your neurologist, this can take a few days or so.  My gp is hopeless, and tells me to contact my neurologist whenever i have any issues involving my condition. He is very reluctant to monitor my lithium levels and he really doesn't want to take responsibility for me at all. Or maybe its because my Sumatriptan bill annually is in excess of £20,000 on his practice outgoings?  I hope you recieve a better service from your gp than i do mine! 

Brad P

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