Mrs

[Ivan1]

Hi I am a behcets sufferer all my life. Severe head pain, what can I take

[belle623]

Hi

I am so sorry; pain period is rough, but head pain is the worst. I have found Nucynta really helps me. Very new drug, almost no side effects and helps with my joint pain as well. Topiramate is another great daily headache med. have tried massage therapy with cupping?

I hope you find some relief.

ash

[Ivan1 in reply to belle623]

Thank you. Haven't heard of those drugs. Hospital ringing me tomorrow. Rang 111 eleven times could not get through, should have rang emergency, but your always unsure. Hope I get some help soon with these severe head pains. I am ok today, sometimes feel a fraud.

[belle623 in reply to Ivan1]

Ivan i am sonsprry it so hard to even get ahold of someone! That is aweful. How are you today? Did get a new medication?

May I ask why you feel like a fraud? Pain is pain, very valid. And it plain out sucks. But, we got keep fighting.

Hugs

Ash

[Ivan1 in reply to belle623]

Hi belle

Still suffering with head pain, may be coming from neck and going over, but interfering terribly with my daily life. Too much to explain.  Called 111 eleven times no joy, this was last Saturday .  I think should have gone to hospital.  Ended up ringing the emergency number which my local hosp (rheumatology) gave me. Got back to me on the Sunday, listened to me said would speak to registrar and my consultant and ring me back. Have heard nothing. Not so bad at moment, using wheat bag warmed up, voltorol being rubbed into neck, but only temporary.  Have had behcets since birth I am now a young 67.  I feel a fraud at times as by time you get an appointment symptoms have gone or on there way out. Pezotafin have been mentioned in one of the behcets news letters by neurologist Dr Kidd .  Maybe I will see about trying these. Thanks for your concern 

[rooser1]

How much water do you drink a day?

[Ivan1 in reply to rooser1]

Hi. Thanks for getting back to me. I do drink lots of water daily, in the house and carry bottle in my bag wherever I go.

[rooser1]

I have to drink about 3-4 liters

of water a day to avoid fatigue and headache. that's why I asked. do you think it's a headache or more migraines? where in your head is it hurting? Give as many details as possible please.