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        New Message Board Archives >> 2002 Posts >> blackouts anyone??
        
(Message started by: jan88 on Nov 17^th, 2002, 1:29pm)

Title: blackouts anyone??
Post by jan88 on Nov 17^th, 2002, 1:29pm

Hello , I am new here. My 16 yr old daughter sufffers from CH's, (in my opinion) yet to be correctly diagosed. She has been having these "episodes" for the past 4 years. They are the most unusally things I have ever witnessed. The doctors have given us no answers. She was sent to neuro to "rule out seizure disorder" for that is what they were called for a couple of years. Then they became pseudoseizures, then dissociate disorder, conversion disorder, and on and on with guessing games. WHY, I ask myself, did at anytime any one of these brilliant professionals even consider CH? Once I found this website, it all clicked together. The symptoms are exactly what she has been experiencing. The only thing different, is she usually always blacks out. I am not sure if "black out" is the correct term. The paramedics have called it that, others have called it unconscious. But she is frantaclly still thrashing about, banging her head on the floor, She is totally unresposive to any stimuli. needles, cold water in the face, talking to her. They first called them seizures, because she started out with having thrembling and jerking legs, and she drops to the floor looking as if she passed out, her eyes always rolled back into her head, as she tightly gripped the left side of her head just above the eye. screaming in agony, she pulls out handfulls of hair. She was usually wrestled by 4-5 adults to be placed in restraints for her ride to the hospital, for the normal run of tests ( cat scan ,MRI, eeg) which are always normal. She has even been locked up in Psychiatric wards for weeks at a time. They have found do mental reasoning to this madness either. I have a new hope since she has just started Imitrex and Oxygen and they seemed to lessen the headaches and all the effects. Sorry for all the rattling on. But can anyone please tell me if they have ever heard of CH's causing a person to "black out".

Thanks Jan

Title: Re: blackouts anyone??
Post by jonny on Nov 17^th, 2002, 1:36pm

What you described is not CH.

........................jonny

Title: Re: blackouts anyone??
Post by suzy617 on Nov 17^th, 2002, 1:42pm

I have never heard of legs trembling and eyes rolling back into head with CH or blacking out, maybe passing out from exhaustion after the episode. You should have your daughter take the quiz on this site.

Title: Re: blackouts anyone??
Post by jan88 on Nov 17^th, 2002, 2:01pm

She has taken the quiz, (question 1-8 were all answered NO and 9-16, 7 out of the 8 were yes) and by the results to me it looked pretty positive, with a few extra unusual curves. ALso they seem to come with the seasons of spring and fall and last for a period of 6 -10 weeks, then pain free and normal in between. We have rule out allergies with an allergist.

Title: Re: blackouts anyone??
Post by don on Nov 17^th, 2002, 3:05pm

She may have CH but there is definitely something more traumatic going on.

Title: Re: blackouts anyone??
Post by GlendaB on Nov 17^th, 2002, 3:26pm

Hi Jan, :)

I, myself, wouldn't say that she doesn't have clusters. But I do think that something else is also going on along with the clusters, if she indeed does have them.

I agree with suzy's statement above, these aren't typical symptoms of cluster headaches. But maybe she has some type of seizure disorder that is triggered by the cluster headaches. The only reason I say this is; I have a friend that has epilepsy and she also suffers from bad Migraines, when she has a Migraine that is high on the pain scale, most of the time it, it will trigger her seizures. :-/

This is just a thought. :)

You didn't say if she has had any of the seizure or seizure like activity in-between the cycles of the headaches you are describing ???

Hope you will be able to get to the bottom of this and find something that will help real soon. My thoughts and prayers are with you and your daughter.

Title: Re: blackouts anyone??
Post by Charlie on Nov 17^th, 2002, 4:09pm

A lot of what you describe sounds like seizures. I too have no sensation of pain when having an epileptic seizure, for example.

I suggest you emphasize the seizures or blackouts the next time you see a doctor. If it's seizures, there is a lot they can do. CH is harder to deal with.
Charlie

Title: Re: blackouts anyone??
Post by Elaine on Nov 17^th, 2002, 4:12pm

Get a new doctor fast for your Daughter something aint right!

Title: Re: blackouts anyone??
Post by jan88 on Nov 17^th, 2002, 6:12pm

The neurologist after reading her EEG and MRI says there is no sign of seizure activity. So therfore she is refered back to Psychiatric doctor, which after 4 years of following her says these "episodes" are not psychological. I am just caught in the middle of all these doctor who just throw there hands up in the air with no answers. After all this time of being passed from medial doctor to neuro then to psychiatric, then back to medical, it all just become a vicious cycle.

Title: Re: blackouts anyone??
Post by David Shea on Nov 17^th, 2002, 7:51pm

Jan 88- Sorry to hear this terror going on in your lives.
I cannot say what the proplem is. and from reading your
post of the doctors reports they cannot say for sure.
Nor can anyone else here on this board say not clusters
or clusters for sure. All hear know that.

The doctor says there are no disorders, No sign of seizure not Psychological and all the test have been takeing, scans, MRI , Psychiatric wards.. All Avenues
have been exhausted. You study this site and take the test and find CH IS WHAT IS HAPPENING. I think it maybe. Maybe this is how the attack is affecting your
daughter. We have A kip scale here and everyone is always trying to put a number on there pain. Some are banging there head on the wall, Hiting them selfs with there phone. crying and all most passing out. Some say
they are comeing to the point of suicide. They thought
they may have past out there last attack was kIP 183.

My HA on the other hand are lasting 20-30 mins. 3 to 4
in a 24hr period. wake me about one hr. after going to sleep and again about 2hrs later. I put my hand to my right eye press firmly and pace to and fro until it is over.

My point is maybe just maybe,We do not know, This CH Attack is going to this extreem with your daughter, And your daughter is shuting down like this from the pain.

There are very good people hear informed helpful and
have been dealing with this a long time. Put to say Yea !
or Nay! I think would be futile.

Keep looking, knock the doors down. And try the CH
abortatives and prevenatives, You have only knowlege to gain. Wish I could help. And this is only My rambleings. I have heard of only four people passing out
when the HA attacks them.

Title: Re: blackouts anyone??
Post by Charlie on Nov 17^th, 2002, 7:53pm

So far as I know, no one here has blackouts from clusters. Some of us do go through strange contortions that can be frightening. My father and I both had epileptic seizures and until being treated with drugs, looked pretty bad.

This isn't the place for this kind of thing but I thought that something here might look familiar. Bear in mind this is just me and things are under better control with medication. None of this was concurrent with a cluster attack:

Some things I went through when having a seizure were: disorientation, sometimes falling, tightly clenching teeth, biting my tongue, jerking my head from side to side, labored, gasping breathing, loss of motor ability for a time, walking from room to room not really aware of much or what happened, and not being able to speak for some time. All of these functions returned but I still don't know everything I did during my worst attacks. Some of it is common to epileptics but not all. Also, I am a victim and I have no credentials. You need to look further into this for everyone's sake.

If it's determined your daughter has seizures, the Massachusetts General Hospital sites are terrific for epilepsy. They have a little of everything and MGH is considered by many to be the finest seizure facility in the country.

The blackouts need immediate attention. Good luck.

Charlie

Title: Re: blackouts anyone??
Post by Slydog on Nov 17^th, 2002, 8:06pm

Jan I have never "blacked out" from an attack of CH although I have had what is considered to be strange behavior by those around me. I'm not sure your daughter has CH but I wish the best for all of you in finding out what is happening with her.

Sly

Title: Re: blackouts anyone??
Post by Drk^Angel on Nov 18^th, 2002, 2:39am

I have theorized in the past that an atypical attack, or a separate underlying condition triggered by an attack, could cause some CH sufferers to blackout during an attack. It does appear to be possible, but very rare. I wish you and your daughter luck in finding a viable treatment.

PFDAN............................................ Drk^Angel

Title: Re: blackouts anyone??
Post by Mark C on Nov 18^th, 2002, 4:01am

on 11/17/02 at 13:29:25, jan88 wrote:

I have a new hope since she has just started Imitrex and Oxygen and they seemed to lessen the headaches and all the effects.

May we have a litttle more information please, Imitrex injection, nasal spray or pills. Also concerning the o2, at what flow rate and type of delivery mask.
I am truly sorry for the unknown diagnosis for your daughter. IMHO there may be CH involved because you are having some success with the abortives, however the other symptoms may be indicative of additional condition. Or maybe to poor child just hurts like hell. Clusterheads are really good at hurting. Good luck.
Mark

Title: Re: blackouts anyone??
Post by echo on Nov 18^th, 2002, 9:36am

Seems like there is more going on than a CH. I cannot remember blackouts being associated with CH.. She may well have some mutant form of CH, but there is something else stacked withit. New Neuro visit is a must in my opinion.