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Zen
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not sure this is CH
« on: Jan 20th, 2006, 1:06pm » |
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 my daughter suffers from "something" we affectionately term her "attacks"..........she is almost 19 years old and has been having them since she was 8.
After reading about cluster headaches I'm not sure this is her at all........but one of your members recommended here for me to just read and compare and tell her basics......so I am.... and I hope you don't mind. He has alot of my daughters symptoms and it took him something like 14 years to get diagnosed, but even he said her symptoms are a bit different but thought it was still worth a look to me since the Doctors keep changing there mind every year on what is wrong with her.........only thing they agree on is she passes out from lack oxygen for no reason and when she comes to these days she has serious cardiac arythmia most of the time, paramedics want to shock her but she tells them NO since she is actually conscious by this stage and once they ignored her and did shock her to get her back to sinus rythym......picture being shocked to supposedly restart/reset your heart when you are awake...........She does get blinding headaches where she can barely function and they are seasonal so to speak ...much more frequent in summer than winter....but....they are only after what we call the "attack"....at 8 they thought epilepsy, and since then we have been shipped pillar to post and back again with no real answer..........the only constant is she passes out from lack of oxygen during an attack......once she is out cold her breathing eventually returns to normal and her heart rate etc and she comes around...........why I think this site was recommended is because the older she gets the worse she is as she comes out of these "attacks" .....these days even if she is laying on a sofa when it happens she can come out of it with a blinding headache that cripples her........as I said I don't think this is cluster headaches but someone said read and compare..............if anyone else has the passing out from lack of oxygen for no reason while laying down {she used to only get the headaches if she hit her head when falling as she passed out which was unusual since she can feel this coming on....or used to be able to ...now she can still feel it but it is 100 times quicker and doesn't leave much time for sitting or laying down like it used to and now the headaches are almost every time she comes around after passing out}(not blood pressure related) and cardiac arythmia and then blinding pain (like someone drove an axe through my head and twisted it and turned it and pulled it out then hit me with it again)etc ..........please let me know if you have any idea's on what could be causing this...she has her next big consult with her cardiologist and nuerologist in March. They are almost as open to options as to what she may actually have, as I am after all this time! And myself as a bystander I can see one of her "attacks " coming on too...she literally goes white from her hairline down, she can be mid sentence face to face with you but now it's like instant, like someone flicked a switch, a few years ago it was more gradual and mid sentence she would say I feel funny or something and you would look and she would be getting pale and she would sit or lay on the floor before she passed out.....now it's happening so fast it's hard to even catch her and stop her from falling when you are face to face with her, by the time I realise she has gone white she is on the floor. Whatever she has is getting worse as she gets older and the worst of it is when she is fine she is very fine, like a totally normal teenager ( except no drugs and rarely drinks because of all the meds the Doctors keep putting her on to try and stop this happening rather than she doesn't want to get drunk or high I think) but when she isn't fine and it happens, it is starting to scare me because it's increasing and the side effects and after effects are also getting worse.
Concerned MUM
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E-Double
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Re: not sure this is CH
« Reply #1 on: Jan 20th, 2006, 2:22pm » |
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Hello Mum,
I am so sorry your daughter has to deal with any level of pain and certainly feel for you having to see her go through it and not be able to take her pain away.
Nothing I read seems in line with anything that I have experienced nor read about regarding CH or other TAC's.
Given that she has been dealing with this now for a decade, I am sure she has been through the mill with tests.
Has she been to Neurologists or just general practioners? Are there headache specialists where you live?
This is the International Headache Society's Classifications for all known headache types.
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pd f
Maybe have a look and see her "attacks" appear to fit any of them.
I am not a doctor so I can only offer some hugs to you across the oceans.
They say that she passes out from lack of oxygen?
Has oxygen ever been given to attampt to alleviate an attack?
Anyway, I wish you all luck in finding an answer and for her to have relief!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
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Zen
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Re: not sure this is CH
« Reply #2 on: Jan 20th, 2006, 3:12pm » |
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TY for answering so quickly Eric. She has been doing the rounds of neurologists and cardiologists for 4 years now ( to see the big boys.... for a few years before that we were going to our closest big city at least once a month...it is around 100 miles north of us but our state capital is 600 miles south).We now travel several times a year to our state capital for her to meet with them and for them to use her as a guinea pig (test dummy) for new meds etc.
Her local GP is probably the one saving grace and the only one that is actually trying to help her have a normal life if that makes sense, the big wig specialists just want her to take this and take that regardless of what it may do! And yes we were given a medical oxygen cylinder for a period of 6 weeks, not sure if it helped stop what happens to her but in my opinion it made her recovery much quicker and much less painful.
When she has her next consult in March I am going to ask for one to be left here at home and try and monitor it properly and see if it really does help from the onset. The only reason we even had it was because a friendly paramedic who has attended the emergency calls here for over 5 years thought it might help and he asked his boss if we could try it for a bit ( his boss has been here a few times over the years so he logged the cylinder out for servicing and stretched it out as much as he could.......I think it helped at least for her "coming around" much quicker and with less pain so I will ask for one at the next consult). Someone suggested I could hire a scuba tank for a few months and use it, I guess if the Doctors say no that is an option?
To date they have prescribed her beta blockers (basically blood pressure meds when she has a naturally low blood pressure to start with {90/60 i think without any drugs}but they did seem to help for about a year for some reason as long as she didn't stand up too quick), anti- depressants (something to do with seratonin levels and oxygen to her brain so they told me..shame about the side affects) and steriods (something like they give chronic asthmatics and cystic fybrosis sufferers to help with breathing) She is now off ALL meds til March thanx to her local GP, it got to the point all the stuff they were putting into her either zoned her out or made her crazy and he is the one that seen her week in week out and saw what all the crap they were giving her was doing to her. I have about 6 weeks left to come up with new theories/alternatives that they can test her for...........a friend suggested I state the facts online at a mdeical site and one theory was cluster headaches and I got sent here by a member of that site and after a quick perusal I thought no not CH but maybe one of your members has an idea.
thanx again
Zen
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E-Double
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Re: not sure this is CH
« Reply #3 on: Jan 20th, 2006, 3:42pm » |
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Does she really pass out due to lack of oxygen or is the pain so damn intense that she blacks out???
Would it be possible for her to visit this site with you and for her to take the "cluster quiz" it will not diagnose, however it might pointyou/her closer in the direction.
There is a thread regarding all the Aussies and you could possibly meat some of them so they could suggest someone in your area. I know it is a HUGE continent, but you never know.
Is there a difference now that she is med free?
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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MJ
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Re: not sure this is CH
« Reply #4 on: Jan 21st, 2006, 12:57am » |
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Hi Zen.
This is a long tale but I will try and keep it short.
This tale involves my mother and maybe you will find some similarities.
She also had been having similar attacks if you will for several years. She would say that she woke up on the floor sometimes not being sure how long she had been there.
In her case no one had witnessed this happen. Of course all her children were concerned but didnt know what to make of it. None had seen it.
She went all the rounds of docs with diagnoses from oxygen deficiencies to possible strokes, blood presure issues etc..
2004 she had a stroke in AZ. I got her to the hospital over the phone. For some reason she called me 2000 miles away. I was unable to get there but had a brother inbound from hawaii who stopped in, then sent sisters to straighten things out. Them being more compassionate than us boys.
She suffered no lasting ill effects from the stroke had good care and everything seemed fine untill a few months later she started fainting again but no witnesses.
She was then diagnosed with mini strokes but that didnt hold up. Admitted for a week at AZ heart institute for testing nothing showed up. Went to Mayo in scotsdale for more tests and nothing.
Finally decided to move her to where my sis and I live. Found her on the kitchen floor one day waking up saying her head hurts like a hammers hitting it. New testing began again. Nothing but speculation.
One day I stopped by for breakfast. we were sitting at the table talking she looked up at me said oooh I dont think I feel so goo.... and kerplunk fell straight out of the chair onto the floor. Eyes rolled back and whiter than a ghost. I thought to myself holding her head in my arms. Hmm I guess thats the way to go, as she was not breathing And did not have an immediate pulse.
After a few moments her pulse returned with a vengeance, color rushed back in her face and she opened her eyes and said whats going on. Then Ohh my head what did I do.
This was the first time anyone had witnessed this happen. Now at least we knew it was real.
Again tests hospital emmissions nothing, However with an eyewitness report we found a very curious doc who did major homework and had suspicions of what it might be. Had one of the better heart surgeons in minneapolis,s Abbot northwestern hospital go to work.
He opened her up and shut down her nervous system and manually worked her heart with electrical probes and meter of some kind. What he found was a real life short circuit through the tissues in one of the wires / nerves that send the electrical pulses to her heart. When a signal was sent to contract on occasion it would short across to the other nerve that would say expand. When these 2 impulses hit simultaneusly The heart would stop dead in its tracks for just an instant and of course this was so quick and infrequent that it couldnt be picked up on a monitor. And this was indeed the cause.
It wasnt your standard heart attack as everything was strong and working excactly as it should except for this occasional short circuiting.
I dont remember specifically what was done with the shorting signal.
A pacemaker was installed and adjusted to compensate with a remote readout. It was shown after 6 months to have been activated for the period somewhere around 500 times. She has had no further fainting spells now in over a year. And no headaches.
Sounds similar or not I dont know for sure. If it helps great.
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MJ
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