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   Author  Topic: Stroke symptoms with CH ? help please  (Read 413 times)
Dave_S
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Stroke symptoms with CH ? help please
« on: Sep 10th, 2006, 2:52pm »
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Let me apologies up front for not searching out the answer to this question I just am not up to it.
I have had cluster headaches for about ten years chronic the last 2 years. I have had stroke like symptoms associated with my clusters on about 12 occasions twice they were severe and lasted months. Most times however for short periods of times during a cluster attack my left for arm and hand  will for lack of a better description just bloody disappear. Not like fall asleep but gone no feeling no ability to move it no sense of it at all.  
The last neurologist to treat me whom I luckily found out quickly was a quack said this was normal with clusters and not to worry about it.  
My currant neurologist says it is related to my clusters and may eventually become permanent. There is a cheery thought I get to slowly loose body parts too. imagine when I loose my heart if I don’t loose my mind first.
 This doctor treats other cluster patients and seems well educated level headed and reasonable. I have an appointment with him Thursday 10-14-06 frankly to put it succinctly this scares the crap out of me. Does any one else have such symptoms or has ever heard of such a thing? If it matters I suffer stress migraines but have had 1 since the clusters started.
 Boy as if I was not already scared enough of going to sleep the prospect of waking up armless or a lot worse off is going to drive me to take my daughters ADD medicine and stay awake for ever that was a stab at humor  
.Thanks in advance
Dave S    
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Re: Stroke symptoms with CH ? help please
« Reply #1 on: Sep 10th, 2006, 3:02pm »
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My father started suffering from headaches in his late fifties. They were accompanied by numbness in his left arm so, of course, the docs worked him up for stroke, heart attack, etc. After eliminating all the obvious stuff, the docs told him he was suffering from a special type of migraine, though the symptoms did not appear to me to meet the usual criteria. Unfortinately, my dad did not pursue further diagnosis once he knew it wasn't fatal.
 
for what it's worth...
 
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Re: Stroke symptoms with CH ? help please
« Reply #2 on: Sep 10th, 2006, 3:59pm »
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Are you a ch alumnus?
 
While you are awake & having an attack, you do not have sensory knowledge of or control over certain parts of your body?
 
I sometimes feel like I have come back from somewhere after some of my minicycles peak & end.  It is like I moved to a new neighborhood or got a new job.  With my current med plan, I noticed I remained during a time when I would have previously been absent.  It was a good feeling.
 
Charlotte
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Dave_S
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Re: Stroke symptoms with CH ? help please
« Reply #3 on: Sep 10th, 2006, 5:17pm »
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Correct during an attack I have twice had what I call seizures the doctor said not to call them that with major memory loss that lasted months. However for the most part the stroke like symptoms are while I am awake during a CH attack I have no sensory control or knowledge of my left fore arm to my hand these above symptoms caused me to seek medical care after giving up all hope for 4 years. I have been cronic for a few years 2 hours on 2 hours off untill I tried BOTOX that has made a huge differance and I have not had the stroke like symptons since going on BOtox
 It is in my opinion kind of funny I saw 5 doctors trying to get home oxygen they all said they don’t prescribe that so I made due. I would borrow a truck load of cylinders once a month from the local hospital and exchange the empties for full ones it must have drove them nuts. The fact that the neurologist I now see who does prescribe me 02 says this condition could become permanent scares me and presents no simple solution like getting your own 02 or tricking the ER doctor into giving you large doses of morphine.
PS I returned the regulator to the hospital after I got my own supply of 02
Dave S
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Re: Stroke symptoms with CH ? help pleaseI have ma
« Reply #4 on: Sep 10th, 2006, 5:30pm »
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I have manged to find just the information I need with out having an attack.
Thanks
Dave S
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Re: Stroke symptoms with CH ? help please
« Reply #5 on: Sep 10th, 2006, 7:10pm »
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I experienced the same but turned out to be side effects from meds
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Re: Stroke symptoms with CH ? help please
« Reply #6 on: Sep 10th, 2006, 8:33pm »
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Hi, I was diagnosed with cluster headaches recently, but have been suffering for the last five years. 3 months ago, I had what in all appearances is believed to be a stroke, but no finding on my MRI (they believe it was less than 2mm lesion in size and therefore not showing on testing). I was hospitalized for a week and spent several in rehab. However, I continue to have issues with recurring numbness, weakness/stroke like symptoms. When I went to the headache clinic they began to question if I have a condition called migranous hemiplegia which can produce stroke like symptoms--they believe I probably have both the beast and migraines. I don't know much about this, but my periods of stroke like symptoms always come with headaches...
 
Good luck and take care!!
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Re: Stroke symptoms with CH ? help please
« Reply #7 on: Sep 10th, 2006, 8:49pm »
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ADD is bullshit.....get your kid off those meds!!!!
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Dave_S
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Re: Stroke symptoms with CH ? help please
« Reply #8 on: Sep 10th, 2006, 9:08pm »
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I was only using stolen 02 and aspirin at the time I had the 2 episodes of major stroke like symptoms. I will search on migranous hemiplegia but I intend to have my neurologist order some imaging because my symptoms the two times I experienced long periods of memory loss and stroke like symptoms don’t fit with a complex migraine they fit a stroke to the tee.  
The disappearing arm trick fits complex migraine I can’t find any real data on it becoming a permanent condition still seeking more data on that.
 My I love her dearly stupid daughter is 20 and decided last semester when she was having trouble at school to see a shrink who put her on speed and downers at night is a big girl now and makes her own decisions no matter how much I scream
 I could not agree with you more that 90 percent of the ADHD is BS show me 12 admissions to the ER for injuries by first grade that were caused accidentally and we might talk ADHD.  
Dave S
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Re: Stroke symptoms with CH ? help please
« Reply #9 on: Sep 10th, 2006, 9:55pm »
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Hello Dave
 
Do you get any other neurological symptoms such as slurred speech, difficulty speaking, blurry or double vision, numbness of side of face, unsteady gait along side the weakness/numbness of your limbs? Also do you get flashes of light or see very bright light during an attack? And does the symptoms disappear completely after the attack stops?
 
If you havent had a MRI it would be a good idea to ask for one, just to be on the safe side.
 
What you get sounds like some form of Ischaemic attacks which can be associated with CH, or can be Basilary Ischaemic Attacks. This is caused by temporary lack of blood flow and oxygen to the part of the brain that controls that side of your body.
 
My DH had similar symptoms for a couple of days in the early stage of his cycle, we got scared too so he went to get CT scan, MRI scan, full blood work as well as a lumbar puncture but all were normal. They went away once he starts using 02. So please get 02 and use it with every attack.  
 
Please double check with your neurologist, get him to explain to you why he thinks it may become permanent as transient ischaemic events in a brain dont become permanent unless they cause a bleed or infarct in the brain tissues. Also ask him if he thinks it can become permanent, what can you do to prevent it.
 
Good luck with it all and painfree wishes to you.
 
Annette
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Re: Stroke symptoms with CH ? help please
« Reply #10 on: Sep 10th, 2006, 11:15pm »
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I have not had the feeling of losing sensation in an arm or leg.  During this cycle I have experienced a couple occassions of bizarre painful jolts as well as electrical sensations shooting down right and left leg (different leg at different times).  Only way to describe it would be bizarre--not like anything i have felt before--this did not last long it was when I was waking up with a headache.  Only happened a couple times.  But the numbness that you feel--that sounds obviously different--I don't know what to say about that--it may be the headache doing that--I don't think that should become permanent but I am not a doctor.  I have not ever heard of CH causing permanent loss of feeling in legs or arms--I think you need to get a second opinion from another qualified specialist just so you can get to the bottom of what you are experiencing.  Star
« Last Edit: Sep 10th, 2006, 11:29pm by starlight » IP Logged
Tara Ann
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Re: Stroke symptoms with CH ? help please
« Reply #11 on: Sep 12th, 2006, 9:49pm »
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Transient Ischaemic Attack maybe?  Which I was told is a kind of "mini-stroke".  I had weakness in my right hand/arm, trouble speaking, trouble seeing out my right eye, and trouble thinking clearly etc.  I was told it was a possible TIA had MRI and all that fun stuff but was deemed fine at the time and had some follow up physical therapy to regain some strength and help some neck pain I had.  BUT best advice is to follow through with your doctors tell them every little symptom you have.  Always rather be safe than sorry!
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