Comments for Occipital Neurologa Migraines - a.k.a. Occipital Horn Syndrome

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More Depression From Things Not Working
by: Jennifer

Well I have been 'gone' for bit. Not completely because I still read updates from this site I just didn't post how I was. Trying to recovery!

Since the right side nerve burning surgery I have had electric shocks all along the right side of my head. My pain management Doctor assured me that this was normal and would subside. It's now three months later - August 26th - and the pain is less frequent, but sometimes I feel it all day which is kinda annoying.

I have gotten migraines again but with less frequency - sadly the same level of pain. So I was put on Lyrica 75mg. In conjunction with that the Doctor wants to try one more supra orbital injection. UGH! WHY?!?! The other 3 didn't work?

I have resigned myself. Fine whatever! I will do what he says. If the injection and Lyrica do not work then next step is an implant in my head/chest that stimulates stuff in my brain when pain comes along.

Shock and horror spread across my face when the doctor suggested this treatment. I clearly said NO WAY! I am feeling apathetic, depressed, and hopeless about this whole thing - if you cannot tell that already. So since my last treatment 3 months ago depression has hit me hard.

I went to my psychiatrist who has changed my medications a few times. I have had feelings and thoughts I haven't had since i was a teenager! (Me being 30yrs old now) It's so odd how a simple change in dose, just milligrams can make my negative harmful thoughts of cutting just vanish!!

Well Tues 28th is my next injection and I don't even have my fingers crossed. Rolling my eyes yes.

To the End of Pain
by: Holly

How wonderful to see an end to the pain of migriane in sight. NO MORE MIGRAINE PAIN! You go girl! Yippee! I hope the results are exactly what you wish for Jennifer. You are so young and you have SO much more fun to have !!! I pray it goes VERY VERY well.

Ending the Pain
by: Jennifer

Well it's scheduled - my twilight surgery will be on May 24th and guess what! It's the EXACT day I leave for my ritual vacation to MD. EVERY year a good friend and I go to MD for the past 5 years for this special festival. It sells out fast, as do the hotels. Booking for both is required waaay in advance. This was THE ONLY surgery date available for this procedure. So, my dilemma, do I postpone surgery and load up on pain medications which make me loopy and could cause me to have a seizure (I have epilepsy) or do I get the out patient procedure and go down to MD any how? If I don't feel well I can hang out in the hotel, hey at least I will feel like I tried.

I have been told that recovery time is just coming out of anesthesia, like the other injections I had already. My therapist believes as long as I don't push myself, this is a much needed emotional break I need. I AGREED! Because of all the other surgeries I have had (cancer) this one makes me nervous. I have to be awake to tell the Doctor if he is stimulating the right nerves 'in the right spot', this sounds like more pain to me!! UGH!

In the procedure, he will burn up the 3 areas then, the results should be no more occipital migraines and cluster headaches. Have I mentioned both? Anyway, it's going to be a nice bonus combo to have an end to the pain.

Pets for Anger Management
by: Holly

No wonder you get angry with your mother in-law. Being pressured from outside to get well, be well, and stay well is just ridiculous when you think about it - but its everywhere. Society favors fit, strong, healthy, busy, high energy people. A good response, and I am sure your therapist will work on some of these with you, so you don't lose your power in it all is something like "Yes, well I haven't found my healing in all of this yet, when I do I hope to return to being paid again for working". "Its not like I choose to be in pain!" is what I'd rather say, but that might stir up a reaction in others.

They just don't understand. Thank goodness you have some good friends and your beloved pets. Pets for extra loving are highly recommended !!!

You can't beat the - pause - breathe - retreat - and validate method that I also mention in my new page called Help for Anger Management. You are already doing the pause! and the validate could be something like: "When you ask me about returning to work right after a treatment, it makes me feel pressured to heal faster than my body can actually do. I realize you don't want me to suffer and I know you would like me to be well right now too, but right now I have to deal with this treatment and just let myself heal. It will be nice to return to work when I am able and not feel pressured in the mean time."

This is just a suggestion that might be easier said than done! You can prepare what you want to say, and repeat it over and over until you actually say it to her. Say it when there is no steam in it! When you are calm about it all. Not when you are angry, try to say it before you get to aggravated by it all.

You could also just write her a letter saying what you would really like to say (yes - everything) and then shred it. Never show her, just destroy it. It is for your process only.

Hug your little pets .... much cheaper than therapy!

Anger Coping Mechanisms
by: Jennifer

Yes I was thinking about asking my pain management Doctor if I could video tape my procedure, since there is nothing online about it. There are a few of the occipital injections.

As for the anger management, thanks for the link! I will be printing that up!

When I feel well enough my husband and I go for walks. I have 5 guinea pigs so I have a pet therapy thing for myself I guess ahahha! I decided to go back to my therapist as this is a trying time. For me she has recommended every other week. I do have friends, we get together every week. I have explained my situation to them. I have seen videos online where people say they have lost friends over this. Maybe my friends are more accepting because they are on the young side? (19 - 30 yrs old.) As for family I don't really have any. It's mostly on my husbands side that we have interaction with. My father in law is a Doctor so he understands, but my mother in law is VERY trying and annoying - not understanding the severity at all. After an injection or procedure I am pressured and immediately asked when am I going back to work. I truly dread her taking me to my appointments but I have no one else to drive me. It takes the control of a saint to be quiet, control my anger and not say anything to her! Ha! My personality naturally is outspoken to begin with!

Complicated Migraines - Occipital Neurologa Migraines - OUCH!
by: Holly

Thank you for sharing your story and for your honesty. It takes a lot of courage to admit to and face your fears. It sounds like you have been on a horrific journey and it is continuing on for you! Oh dear, I do wonder why scientists can't find better solutions with the technology available today. I feel for you. You have so much more going on including migraines. No wonder you feel angry, frustrated and scared. That makes sense to me.

I can also relate to "getting to know" that angry part of my self. It helped to discover that I can learn some techniques to pause and eventually stop this less favorable behavior and that I am not an angry person. It does not define me or who I am. I am actually a kind and gentle soul dealing with a condition that would most likely make anyone angry and scared.

But how can you not get angry - dealing with what you have to deal with! I mean really. What we have to put up with - these pain levels - other people have NO idea. Plus you have to deal with your other conditions and the short term memory loss - that is horrific in itself.

Hopefully - your loving husband - can see that the anger is just from the physical and emotional pain. He can see it is not the whole of you. Have you had time to print out our anger worksheet? It uses CBT as a basis – here is the link:
or just type anger management in the search bar above to the right. You might find it useful.

On a separate note, perhaps, and only if it feels right, you could video your procedure and the lead up tests, and we could put a page up by you to provide the information you could not find to help others. If you have the energy and the technology that is! It’s just a thought.

My thoughts are with you during this difficult stage. All I can say is hang in there. It’s a tough road and hopefully your wonderful husband will help you find some joy in each day.

Do take care.

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