I could use a bit of input before going to see my GP in a few weeks.  Over the last 25+ yrs occasionally on a bad hit I will experience temporary paralysis on the right side, (CH side).  The first time I thought I had had a stroke and went to see my Dr right away.  He said not ot worry about it, that it is just a sympathetic nerve reaction to the pain, that it is quite rare among clusterheads, but causes no damage.  Over the last few months I have been having them quite  bit more frequently.  It used to be that it would happen maybe once every three or four years, but I have now had it happen three times in the last two weeks.  The last of these happened today at work.  I had to have one of the kids who works for me help me into the office as I could not stand alone, let alone walk.  Needless to say it scared the crap out of most of the staff, especially one of the Preschool teachers who saw me get hit and almost go to my knees.

In April I had an MRI about a week after the first of the current attacks, and nothing was seen of any damage showing a stroke or a TIA.  

I intend to bring this up with my Dr.  She is not a HA specialist, but has several in her family with migraines, so has made HA a hobby.  She is pretty knowledgeable about CH from her research, and has been great to work with.  I would really appreciate any input on how to discuss this with her, and what I should be looking for.

The attacks can start during the shadow stage just before a major hit, or during the hit, and will generally last from 30 mins to an hour after the pain is gone.

Thanks for the help.

Jerry

Hi Jerry,

Yup, same thing has happened to me, that there is some SCARY stuff...I reacted the same way...got the same tests...and I was told the same thing..."don't worry".

Can't help you beyond encouraging you to relate everything to the doc (as my current neuro once told me, tell me EVERYTHING, you never know what might help).

My own personal theory is that spasming blood vessels could go either way...too big OR too small...with my current verapamil regimen...it is
now rare...

Best,

Jon

thanks Jon,

I think I remember responding to your post about this some time back.  The only real concern I have with it is the increasing frequency, and with that the inconvenience.  It doesn't really hurt, nor does it really feel like the hand or the leg is asleep, it just doesn't want to work.

JC

Either rare OR is just starting to be recognized as a possibility in CH.
=========

Headache. 2002 Feb;42(2):136-9.
Hemiplegic cluster.

Siow HC, Young WB, Peres MF, Rozen TD, Silberstein SD.

Jefferson Headache Center, Department of Neurology, Thomas Jefferson University Hospital, Philadelphia, PA 19107, USA.

We report four cases of a new variant of cluster headache associated with hemiparesis [weakness affecting one side of the body]. Clinical similarities with hemiplegic [paralysis on one side of the body] migraine suggest that hemiplegic cluster, too, may be a channelopathy. One of our patients had a family history suggestive of an autosomal dominant inheritance.

Publication Types:
Case Reports

PMID: 12005289 [PubMed]

Gosh, Jerry.  THAT would scare the crap out of me!    If CH isn't bad enough let's throw in some paralysis on top of it!  Geeze!

I'm sorry that you go through this and I hope you can get it under control soon.

Hugs,

Jeannie

its something that effected me to, but thakfully it has moved away
now, i also suffered bad vertigo with it as well.

hope you improve soon

Hi Jerry,
    While this probably is just a rare side effect of the CH,I would urge
anyone with this type of problem to insist on not only a MRI but also
an MRA! (Just ask DJ how important that can be)

Bob,

Thanks!  I knew I could count on you coming up with an answer for me.  I'll take that to the Dr with me.

Just squiggles,

I make sure to have that each time I get the MRI.  Had it in April.  Excellent point though.

Jerry

I can't say that it affected me when or after getting hit. Years later of course, I had my TIAs, so now I have some more pills to use  >:(

My twerp likes to Doppler me now and then. So far, my circulation is good but I'm older than sin.  Perhaps a Doppler would put minds at ease.

Charlie

Thanks Charlie,

Did that too.  I think she was just trying to find something she could prescribe something else for, cause she knows I won't do half of what she wants me to do unless she can find a really good reason for me to do so.

Jerry

I have also experienced this as well but on the left side of body I lost sight in my left eye and loss of all movement on the left side. This was actually my first episode with cluster headaches.

That just gave me so much relief to hear someone else gets this..  I just had a mra and mri 2 weeks ago and mine came back clear :)...  I actually took my phone and video tapped it for my doctor, it only happens to my right side during attacks, my eye will not open and my lip droops it takes everything in me to try and move my right side it looks like belsposy (not sure how to spell that lol), my doctor told me that it is a normal side effect from it but he hasn't seen the videos yet .. See him on the 24th.


Tammy