Hello everyone,

I am not sure if I have asked this before because my memory is horrible. :oops: I warn you this isn't worded great because I cannot think clearly right now.

Has anyone with IIH been diagnosed with any other condition such as occipital pain or other nerve pain, in addition to the IIH?

Although I have been diagnosed with IIH, I think I have (IN ADDITION) occipital nerve pain. I have the high pressure headaches and, what I believe to be a different pain, that radiates from the occipital nerve area at the back right base of my skull. I am currently only self-diagnosing the occipital pain (I know it is not a good idea to self-diagnose). I have found a doctor at Georgetown University, Dr. Ivan Ducic, (type into YouTube to see his videos), who performs peripheral nerve surgery after people have tried botox injections. From what I understand (and I am not an expert), he surgically moves the muscles away from the occipital nerve and this relieves (at least) that specific nerve pain.

I have been reading about Julie and others' botox injections and I am just wondering if maybe other people on here have heard of this doctor and his treatment for nerve pain that causes headaches (more accurately stated, head PAIN).

I am posting the link to his website for you to look at (I hope that is allowed!)

http://drducicplasticsurgery.com/Ducic_Plastic_Surgery/Home.html


Thanks for reading and responding. :flower:

If anyone is interested, here is a link to a video lecture he does on relieving migraine pain/headaches (nerve pain).


http://www.georgetownuniversityhospital.org/LectureSeries/?lecture=Surgical_Treatment_Chronic_MigraineHeadaches

Hope the link works

Hey there! I understand the not thinking clearly part. I somehow make it to work and I feel in a fog... dealing with my head pounding and Med side effects. Blah! I was just also diagnosed with trigeminal neuralgia totally spelled that wrong sorry.... but the diamox barely helped but they say the iih is stable. They just started me on neurotin for the nerve crud. Not really helping yet but it seems to have helped other people so I'm waiting it out.. I'm not sure if this answers your question. Do yiu have pain in your face? For me it hurts in the back if the head but mostly my face even my skin hurts to touch.

Hi. My pain varies some. The majority of the time it is an incredible pressure/pain. It feels as if my head is going to pop off like a geyser (best analogy I can come up with). :roll: In addition to the pressure, and especially bad when the barometric pressure in the air changes, I have terrible pain in the back of my head just to the right---like just underneath the skull area. It radiates all the way up the back of my head to the top and even my neck hurts. I really can only say it hurts like heck almost all over. :( I do not have face pain so I am sure I don't have trigeminal neuralgia. It is pretty much the diagram that I am pasting here, but, like I said. It hurts all over. I really believe I have occipital neuralgia AND IIH. I do not know for sure because I am self-diagnosing the occipital neuralgia. I am hoping to go to this headache clinic at Georgetown when I get insurance in January! Here is the link with the diagram of where the occipital nerve area is.

http://drducicplasticsurgery.com/Ducic_Plastic_Surgery/Migraine_Headache_Surgery.html

It is miserable to feel like that ;( are you still able to work? Has diamox helped at all?;( or nerve medicine? I wasn't able to investigate my headaches for a long time due to no insurance its terrible waiting

I was on diamox from late November 2011 to end of March 2012. Really, it did not seem to help at all. I was on 2000 mg a day. I went off of it when my insurance ran out in April. I'm waiting to pick the insurance back up in January. I really hope I can last that long cause the pain is out of control. :( I plan on trying to go to Georgetown's headache clinic even though I am in Florida. I haven't found any headache specialists here who can effectively treat me....very disappointed.

Sorry if typos. I'm on my phone.

Oh, and no I'm not able to work. I am barely able to function, let alone work. I'm miserable and that's an understatement! :(

I'm sorry ;( I know what you mean about disappointment ;( the diamox doesn't help my symptoms either...they want be on the 1000 mgs a day to make sure my eyes stay Ok.... I guess. Its defeating the pain controls you.... they don't want to prescribe pain meds but I can't think if another way! That's awesome about the doc you found!too bad he won't do a phone consult. Are u able to do anything to help your pain for now?;(

Unfortunately, no. I have no pain relief. Barely hanging on....I take OTC meds but nothing helps. I know my pressure is up and my sight is getting worse.

Have you watched Dr. Ducic's lecture? I posted link above. He treats people with your condition, trigimenal neuralgia. I am going to try to raise money to go see him. Please watch the videos of the people he has helped.

I know the nerve pain is horrible, on top of the IIH.

:(

I am so sorry ;( keep hanging in there! Something has to work at some point that's what I keep telling myself. That would be a good idea to raise money I'm sure people would like to help. I will watch those videos tomorrow am. I'm excited to learn about it! I've only been logged on with my phone this week so I'm limited. Tomorrow ill get on a real computer! But yes the pain is miserable the nerve pain meds I think are starting to kick in but there have been weird side effects. If it works though I will deal with the side effects! I feel so bad for you and the insurance issue! I know how it feels its horrible

I was just dianosed last Wednesday I no longer have peripheral and I do seem to have loads of pain in my temples along with the immense pressure in my head. I haven't had the big sit down with my neurologist yet, I do that on the 12th. But I will ask her what they do for that. I too am on diamox, 500 MG a day. I am not sure on that one yet either. It makes my hands and feet tingle randomly. Kinda feels like if your leg falls asleep and you try to use it and that tingly feeling you get. Also the diamox makes me really really crabby. So I am trying to find out about that too. I am new to this as well. I think it would be a good thing if we learned together!