Katrina

Hi guy's, thankyou all so much for your replies and advice!! I have some home work to do now!! Let me describe my symptoms in more detail.... I have what the neurologist calls an underlying headache that to me feels more like warm pressure on the top of my head. This I've had since day one! It does go away sometimes but I have the sensation there all the time. It does become very severe especially when I get a lot of (attacks)! And can last for hours or days. Now, my attacks as the Dr calls calls them feel like something is being stabbed into the right side of my head behind my ear and travels through my head and down my face. The weather does affect my headaches as does noise, big crowds, stress, being busy etc. As I said in my original post I also have a blown/ paralyzed right pupil. This blew the evening I was admitted to hospital the exact day everything started. However, the neurologist has said this is not connected??? I was on pregabline but it made me poorly.Here is the medication I am on at present... Lamotrogine, topiramate, venlafxine, domeridone, amitriptyline, naproxen, omeprazole, thiamine, vitamin b compound, sumatriptan. Still a cocktail I know, but I was on a lot more!! Any more advice would be appreciated.

Thankyou both for your comments! Myself, husband and family are dissatisfied with the second diagnosis too! I have been either entirely dosed on so much medication or in so much pain for so long. Only the past 4 months after an accidental overdose to which I technically died.... have I chosen to struggle with coming off of some of the medication. However, I still have a lot of hits and continue to blackout (pain related)..... my diagnosis!!! I would be interested in other people's situations so I can compare when I go back to the neurologist?!!

Good evening! I've been searching for a forum like this for a few years now?! This one actually seems to be active!! I have been diagnosed with SUNA syndrome nearly 5 yrs ago, have been on many medications. I have blackouts due to the pain so went into a London hospital last year and have been re-diagnosed with CH. I also have a paralyzed pupil on the same side as my pain! Can have upto 50 attacks per day and over 120 on a worst day! I'm looking to talk with ppl that have a similar situation and advice as to if I should go for a third opinion.... which is what my husband wants..... Hope to hear!!!!