What is wrong with me? I have been told by several Doctors that I have really bad migraines. I have had them all my life but they have changed over the years. Now I can feel them coming on. I see halos or auras around lights before them come or sounds begin to bother me.  When it hits I can’t lay down and sleep it off like the doctors say because it hurts too much. I NEED TO WANDER! (I know that sounds crazy) I will wander around Walmart or anywhere I am for several hours.  If in the car, I will bang my knee or leg against the car door while going down the road to the doctor or hospital. I also rock, back and forth, moaning and muttering to myself like a crazy person. The pain starts all over my head at first, then suddenly moves to the right side. The right side of my nose the stops up, my right eye waters and sometimes my face on that side goes numb. I swear my right eye is being pushed out of my head. (my husband says it’s not bulging)  I try not to cry hard because I know my head will explode and stuff go everywhere.  If I don’t take  zofran (sp?) for vomiting I will throw up for hours, every 10-15 minutes (record for throwing up:  12 hours non-stop).  During and “event” I will suddenly feel fine only to violently return to the agony minutes later. This “on and off” continues for hours. I have tracked certain triggers over the years. But even then I will get them out of nowhere. I have taken all kinds of drugs and only a heavy mixture of codeine, butalbital, caffeine and Tylenol helps if taken soon enough. After an event I have a “hangover” that leaves me exhausted for about 24 hours. I get them at all time and even in the middle of the night I have awoken in full fury, crying to my husband begging for help. I know this sounds  like I’m over reacting or have serious mental problems, but I have successfully  raised a family and I own my own business.  I also get “Ice Cream Headaches” or “Brain Freeze” without  eating anything at all. I call them Stroke Headaches. That pain is off the scale.   It feels like I have a migraine in the waiting all the time. It’s always there in the back ground. Sorry this is so long but I don’t know what to do or what’s wrong with me.

WOW!!!!!!!!!![  Wandering around Walmart or anywhere else in public is a no-no for the majority of us.  We cannot stand to be in public.  In fact getting hit in public is one of our worse fears.

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That is not what usually happens when one has CH

I wish you had made more paragraphs as it was very hard to read what you were saying....we will try to help you all we can here.   It sounds like you are scared and have a whole lot of other things going on at the same time..(Ice cream HA;s)   etc.

Lets take one thing at a time and let us know what we can help you with first.   O.K.?

Alison - that sounds like a pretty complex mix of symptoms that will need a good neurologist to sort out. What will help with this is if you keep a diary of when you get headaches, the symptoms, how long they last, how painful, etc. It may also help you spot patterns and maybe something that trigger them, which could be food, medication, time of the day, seasons, etc.

The more information you can give your doctor, the easier it is for them to help you.

Dittos, dittos and dittos. Or is that dittoes? Anyway, the thing that caught my attention was the wandering. I absolutely agree with Linda...getting caught out in public is one of my worst fears. But...one of the characteristics of clusters, as opposed to other headache types, is that urge or compulsion to move! Migrainers tend to seek out dark and quiet places. CHs tend to act like we have St Vitus Dance or something. Do see a doctor, but it won't hurt to try the most effective abortives you'll see here. lance

As others have said, it sounds like you need to get yourself to a good neurologist! Bob_Johnson posted some great resources for you.

You asked about OTC medications working for SUNCT. I don't have SUNCT so I can't say for sure, but I do know SUNCT headaches are difficult to treat. From my understanding, SUNCT is usually unilateral and does not switch sides, hence to "U" in its acronym. SUNCT does have the autonomic issues such as tearing and nose stuffiness that is also present in cluster headache.

Some things to think about: Others have mentioned that you may have symptoms matching SUNCT (tearing, nose stuffiness, shot to long lasting headaches). Another one that has not been mentioned is an atypical trigeminal neuralgia (issues of the nerves of the face, possibly bilateral rather than unilateral,and  migraines).

Obviously, you have a very complex case, or a case with more than one headache disorder going on. Nobody here can diagnose you, but only provide suggestions. My best advice is to arm yourself with knowledge, keep a detailed log of your headaches, and visit the best neurologist you can find. Some of us have gone through many neurologists before finding one who can effectively treat us or tell us what kind of headaches we're suffering from. You are your best advocate!

Guiseppi wrote on Sep 4^th, 2010 at 10:41pm:

You would be amazed at how many people with CH have symptoms similar to all 3 conditions.  I think it is part of the reason some folks take a long time to get diagnosed.  What people describe as very heavy shadows, could very well be a migraine.  The short jolts that go away, could be sunct or cph.  I know I have symtoms of all three, so does the person that I live with.    And there are plenty of people I've talked to who are the same.  Now, I'm not saying the OP falls into this category, but I think it may be more common place than what you may believe.

This was a comment from the Clusterbuster's website about their recent convention in Portland:

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Alison wrote on Sep 8^th, 2010 at 7:40pm:


I guess my question is, how long can you afford to not seek medical intervention since your case is so complex? If you have interventions that are working and allow you to work, great! If you don't....? Try everything first, but if it doesn't work, just let the bills pile up, get them lumped together, and give $20 bucks a month forever. I've been there; I am there. So I knew how difficult it can be. Keep us informed, OK? Blessings. lance