My husband is a Cluster Head, been in remission  since last  July (thank God) cycle lasted 4 months but was a light  one.  O2 worked liked a charm this  time.  Seems like every four years he gets hit, sometimes worse than  others.  Anyway,  he is ok so we are gratefull.  I owe everything I know to this board.

My questions is this,  my niece (30 years old) all of  a sudden  woke up one day with severe pain on the top of her head, she described it as a hot poker stabbing into her head, it hurt so bad.  She is an ER nurse so she  went to the ER and they did all the standard tests and everything came back negative.  She went to 2 neurologists and they said they think it might be a virus or some form of migrane.  This  has been happening a couple of times a day  for the past 3-4 weeks.  She  has been to the ER and they gave her all types  of pain killers,  morphine, dilordan (sp) etc. but nothing  has worked.  She cannot take imitrex  has she did 2x before for  migranes  and it lowered  her heart rate too much (I know it usually does the opposite)

She is convinced she has clusters, however, I am not so sure as the pain is on the top of her head as opposed to the temple and eye.  Although she does get the runny nose just before an attack.  The neurologist now put her on lithium for the past 5 days and she has not had any attacks but is not liking  the  side  affects.  She  is also on Topomax.

Does anyone think this could  be clusters?  I am not so sure.

Sorry for  the long post but I wanted to give you all the facts.

Thanks in Advance for any advice.

She could have clusters, but I cannot be sure as she has seen 2 neuro's who have ruled it out.  Is there a headache specialist that she can see?

:)mel

If your husband had an  02 tank to deal with his CH....could he let her use it?    That might be telling to her if it worked to relieve a HA...

Linda_Howell wrote on Mar 19^th, 2009 at 10:19pm:

If your husband had an  02 tank to deal with his CH....could he let her use it?    That might be telling to her if it worked to relieve a HA...

Ditto
My thoughts exactly, if the o2 kills the little sucker there's a good/ bad chance that it's CH.

Cheers
Barry

Is it possible she can see your husband's neuro - at least he has someone who is treating a CH patient...

If she does not have pain in the trigeminal area with the autonomic symptoms ( droopy eyelid, watery eyes, constricted pupil on one side ) then by definition its not cluster headaches.

Quote:

<snip>She went to 2 neurologists and they said they think it might be a virus or some form of migrane. <snip> The neurologist now put her on lithium for the past 5 days and she has not had any attacks but is not liking  the  side  affects.  She  is also on Topomax.

Did the neurologists prescribe any type of anti-biotic in addition to the lithium and Topomax?

with warm regards,
Tony

first forgive me i am not alway eloquent but if it looks like a duck and quacks like a duck good chance its a duck ;D

Thanks for all your feedback and yes she tried the O2 but she was not sure it worked the first time as she used it after the pain set in.  She actually sucked down 3 small tanks.  She now has a tank at home and we told her to try it at first sign but so far she hasn't needed it in a week.

She went to a headache specialist in NY Wednesday and he said there are many forms of migranes and clusters and it was hard to distinquish which one it was because it has only been a month and there was no pattern.  He said to stop the lithium and topomax and see what happens.  $450 bucks and still not diagnosed.

I told her to stop the lithium but stay on the topomax for another week and then see what happens and that cost $0.

She took my advice and so far, so good.  

Has anyone experienced pain on the top of head as opposed to one sided?  Headache specialist said its possible.

wrote on Mar 20^th, 2009 at 3:06am:

If she does not have pain in the trigeminal area with the autonomic symptoms ( droopy eyelid, watery eyes, constricted pupil on one side ) then by definition its not cluster headaches.

True, but the opthalmic branch of the trigeminal goes all the way to the top of the head.  I would not suspect clusters in this case, but it is a remote possibility.

The fact that oxygen is useful (or not) does not tell us much - migraneurs married to clusterheads report benefit from high flow oxygen, and I would expect some other types of headache respond to oxygen.

Even those with hangover headaches can benefit greatly from O2 therapy.

Using O2 can't hurt. Give it a try.

Was Topamax prescribed for the CH?

Charlie