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Cluster Headache Help and Support >> Cluster Headache Specific >> Annette, How's Your Husband?
(Message started by: kcopelin on Nov 6th, 2006, 12:34pm)

Title: Annette, How's Your Husband?
Post by kcopelin on Nov 6th, 2006, 12:34pm
Annette,
I probably missed the follow-up on how your husband is doing-so, sorry if you have to repeat yourself-was just thinking about y'all last night and wondered how he is.
Probably others are concerned too.
So...how's your husband?  Stitches healing, eyesight better or worse, CH better, worse or same?  And how are you holding up.  Being a supporter can be hell.
Praying for PFDAN for y'all,
kathy

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 6th, 2006, 3:40pm

Hello Kathy

Thanks for asking.  :-*

Daniel is learning to cope but he is still getting hits 3-4 times a day, and this is now week 16 since it all started, really wondering if he is going chronic.

He has just started to learn how to use oxygen properly and managed to abort a couple milder hits . YAY ! Otherwise the only things that work all the time is imigran injections.

His vision are still the same, blurry, fluctuating. We have another appointment with the Pain Clinic today, and also with the psych.

I am holding up fine, thank you, bit tired and rather busy but still smiling  :)

I hope you are painfree Kathy and keeping well.

Hugs

Annette

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 6th, 2006, 3:42pm
How much imigran is he using and is he using any preventive meds?

Title: Re: Annette, How's Your Husband?
Post by The mad viking on Nov 6th, 2006, 3:59pm
some docs says 2 shots of trex 12 hors apart

some neuroes say 4 shots a day , some 6 and i shoot up to 8 a day and i am still among you friends "sorry to say"   ;;D ;;D ;;D ;;D

The WR as far as i know from my neuro is that there is a guy at some headacheclinic in Gothenburg in Sweden that has been precsribed 32 shots of trex a day for mnths

The "2shots a day"rule goes back to the early 90s when trex was released when GSK and the researchers was unsecure about sideeffects+++++ etcetcetc

Today the neurollogissts sau they dont believe that trex is that bad for the heart as first expected.My neuro tell me to take what i need to have a  as normal life as possible

Many around here in Clusterville are pretty much hung up in chestpain and sideeffects etcetc

There is a rather distinct difference between heartpain and chestpain and it can be mistaken

I have experienced both

As you know Anette is that the muscles contracts when use of triptans.Some peps cryes wolf when that happend

i would say that quality of life should come as nr 1 on the prilisst

Just my 2 cent worth


Svenn

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 6th, 2006, 4:09pm

on 11/06/06 at 15:59:39, The mad viking wrote:
some docs says 2 shots of trex 12 hors apart

some neuroes say 4 shots a day , some 6 and i shoot up to 8 a day and i am still among you friends "sorry to say"   ;;D ;;D ;;D ;;D

The WR as far as i know from my neuro is that there is a guy at some headacheclinic in Gothenburg in Sweden that has been precsribed 32 shots of trex a day for mnths

The "2shots a day"rule goes back to the early 90s when trex was released when GSK and the researchers was unsecure about sideeffects+++++ etcetcetc

Today the neurollogissts sau they dont believe that trex is that bad for the heart as first expected.My neuro tell me to take what i need to have a  as normal life as possible

Many around here in Clusterville are pretty much hung up in chestpain and sideeffects etcetc

There is a rather distinct difference between heartpain and chestpain and it can be mistaken

I have experienced both

As you know Anette is that the muscles contracts when use of triptans.Some peps cryes wolf when that happend

i would say that quality of life should come as nr 1 on the prilisst

Just my 2 cent worth


Svenn



I know you have to use it to continue on.  The side effects and such are not what concern me about imitrex/imigran, it is the prolonging of cycles that use of triptans can cause.  The last three years have been my easiest cycles ever, the only difference is no imitrex.  

Title: Re: Annette, How's Your Husband?
Post by maffumatt on Nov 6th, 2006, 4:18pm
I can back Thomas up on that, I believe Trex prolonged mine from 3 months to 10 months, I only use it in emergency's now. When I cant use O2, and even then if I can ride it out without it, I will. If I have to use it I use as little as possible, 1/3 normally does the trick for me.
Matt

Title: Re: Annette, How's Your Husband?
Post by seasonalboomer on Nov 6th, 2006, 4:18pm

on 11/06/06 at 16:09:17, thomas wrote:
I know you have to use it to continue on.  The side effects and such are not what concern me about imitrex/imigran, it is the prolonging of cycles that use of triptans can cause.  The last three years have been my easiest cycles ever, the only difference is no imitrex.  


As is often the case, just as the last two years have been your easiest cycles ever. Mine too .... only difference for me is that I've had Imitrex and O2.... damned insidious beast....

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 6th, 2006, 4:49pm

Thanks all for your inputs  :-*

Daniel is on verapamil 360 mg twice a day, Lyrica 300mg twice a day and Indomethacin 75 mg twice a day as preventive. He had tried Lithium, Ergotamine and Deseril ( Sansert ) in the past without success.

He is learning how to relax and how to use the oxygen properly. Its amazing how much better the oxygen works when one gets the hang of it.

Imigran injection is the only thing that works all the time without fail and he is splitting the dose as suggested in the imitrex tip. Zyprexa doesnt yet abort the whole attack but reducs the pain and shorten the length of the attacks, making it easier for the oxygen to work.

Painfree wishes to all.

Annette

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 6th, 2006, 4:54pm
I'm no doctor, but I'd dump the indomethican, unless he has CPH as well.  I'm not a big fan of verapamil either, but if it's working.  Hope he gets some pf time soon.

Title: Re: Annette, How's Your Husband?
Post by The mad viking on Nov 6th, 2006, 5:27pm

on 11/06/06 at 16:54:37, thomas wrote:
I'm no doctor, but I'd dump the indomethican, unless he has CPH as well.  .



I really do agree with you on this Thomas


Svenn

Title: Re: Annette, How's Your Husband?
Post by chewy on Nov 6th, 2006, 6:43pm
I also wouldn't spend the next 36 weeks worrying about him gooing chronic.

Day at a time.

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 6th, 2006, 7:10pm

on 11/06/06 at 16:54:37, thomas wrote:
I'm no doctor, but I'd dump the indomethican, unless he has CPH as well.  I'm not a big fan of verapamil either, but if it's working.  Hope he gets some pf time soon.



Thanks Thomas

He does have CPH as well. Without the Indomethacin he experience a constant headache and dull pain/burning all the time, between hits. This goes after 3 days of Indomethacin. We tried to wean it off for a while to see what happened and it came back, so he started the med again and it went again.

Verapamil is necessary as he has borderline hypertension without CH, his usual blood pressure was already at 145/90, during an attack it would shoot up to 200/120. So he should be on antihypertensive anyway, might as well be on Verapamil. Unfortunately it didnt help him as much as it did for others.

Thanks for all the suggestions. Please keep them comming. They are much appreciated.

Annette

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 6th, 2006, 7:12pm

on 11/06/06 at 18:43:13, chewy wrote:
I also wouldn't spend the next 36 weeks worrying about him gooing chronic.

Day at a time.



You are absolutely right Chewy, easier said than done though, we are trying to.

Thanks for all your kind words and support  :-*

Annette

Title: Re: Annette, How's Your Husband?
Post by Jobette on Nov 6th, 2006, 10:20pm
Annette, I missed your first threads, how long has you DH had clusters and how many other conditions are you treating? Jobette :-*

Title: Re: Annette, How's Your Husband?
Post by kcopelin on Nov 7th, 2006, 1:02am
All right Annette, thanks for the update.  So Daniel is using Zyprexa as well as O2 and imigran?  Annette, this may be little consolation, but for the first 5 years or so of my CH each cycle lasted between 1-2 months.  The cycles got progressively longer, and more intense.  Only after 24 years did I become chronic.  I thought chronic would be the worse thing possible-in a way its a blessing-I do not have to spend any time wondering when the next cycle will start.  Just live between the pain.
My best to Daniel,
kathy

Title: Re: Annette, How's Your Husband?
Post by roy21302 on Nov 7th, 2006, 3:37pm
Annette,
            Thanks for the update on Daniel, just remember we are all pulling for you both of you take care.
                                                       Cheers Roy :)

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 7th, 2006, 7:41pm

Thank you so much everyone for being here for both of us. The support has helped more than one thinks possible  :-*


Jobette,

This is Daniel first cycle, he was diagnosed on 01st August this year. We are still learning the rope.

He has existing borderline hypertension but otherwise was healthy pre CH. Now with CH he has Trigeminal neuralgia, Chronic Hemicrania, Hysterical blindness and Anxiety/Depression  :(

Oxygen has been a godsend, also imigran works well, zyprexa is helping and melatonin is great, verapamil is more of a necessity. The next thing to learn is relaxation, a positive mind frame and a better coping strategy.

Painfree wishes to all.

Annette

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 8th, 2006, 8:58am

on 11/07/06 at 19:41:04, BB wrote:
The next thing to learn is relaxation, a positive mind frame and a better coping strategy.



You would be amazed at how much that actually helps, that is a tool that I learned to use from Mike/Magi from Canada.  

Title: Re: Annette, How's Your Husband?
Post by georgej on Nov 8th, 2006, 9:29am

on 11/07/06 at 19:41:04, BB wrote:
The next thing to learn is relaxation, a positive mind frame and a better coping strategy.


I agree with Thomas.  It's surprising how much this can help.  It's not easy to learn, but it's certainly worth it.

Best wishes,

George

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 8th, 2006, 5:28pm

Thanks everyone  :-*

Daniel is now seeing the psychologist and the physio therapist from the Pain Clinic weekly to learn relaxation techniques through meditation, yoga and bio feedbacks.

Seems to be helping so fingers crossed.

On the other hand, the beast is morphing. The hits now are all over the place and totally random, not sticking to a timeframe like it used to . Thats why the question whether he is going chronic ?

Oh well, to follow Chewys and others advice, one day at a time and not fretting about the next 3-4 or 34 weeks.

Painfree wishes to all.

Annette

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 9th, 2006, 11:00am
OK, I just lost a HUGE post that took me 20 minutes to type out.    :-/  I had inserted a bunch of quotes from you and put in responses but ... I think I broke the system.  *sigh*

So...I'm just going to summarize what I said.  Annette, there are some things that really concern me in your posts in this thread and, although I know you're very new to cluster, I feel they need to be addressed, ok?

1.  The definition of chronic is 12 months in cycle with no more than 30 days of pain freedom during that time.  Daniel, therefore, can't be chronic until next August 1.  

2.  Sansert, Imitrex, Verapamil, Lyrica, Indomethacin, Melatonin, Lithium, Ergotamine, Zyprexa....  wow, that's a lot of meds that he's tried in just over 3 months!   :o  I realize that he's not on the lithium, ergotamine, or sansert anymore but...HOLY.  Annette it could very well be that all of these chemicals he's put into his system in such a short time have made his condition horribly worse.  :(  My heart just aches for the poor guy.

3.  CPH is chronic paroxysmal hemicrania.  It is not 'all day pain' as you describe.  Here's a definition of it from OUCH-US - the headache comparison chart.  http://www.ouch-us.org/chgeneral/hacomptable.htm   I know you prefer google for your researching but sometimes google doesn't give accurate information.  

4.  Zyprexa....this is an antipsychotic med used to treat schizophrenia and bipolarism.  It's never going to abort a cluster attack as you're hoping.  There are many lawsuits that have been launched because of the horrible side effects this med can cause, hysterical blindness being one of the milder ones!  Is it absolutely necessary that he's on this med?  Here's just one website on all the atrocities Zyprexa can cause...
http://www.alexanderlaw.com/zyprexa/side-effects.html

5.  Blood pressure - it's common (almost a given) for a clusterhead's b/p to shoot up like that during an attack.  Please tell me you're not taking his b/p during his attacks?  I tried that once with my husband.  Only once, never again.  It nearly drove him insane having to sit there feeling his arm squeezed...  if you are doing this, Annette - please stop ok?  Zyprexa can also cause low blood pressure.  Combining that with verapamil could be VERY dangerous!  What IS his resting blood pressure now, Annette?  145/90 isn't all that high - yes, it's on the high side of normal.  No, I'm not a doctor, but this is MY exact blood pressure actually and my doctor says it's not high enough to warrant treatment yet.  I'm better to control it through diet and lifestyle.  Less coffee, less smoking (less all the good stuff :().  You've got Daniel on TWO blood pressure lowerers.  Why?

6.  I know your heart is in the right place, Annette - please take my post in the spirit I'm sending it.  I know the temptation to throw all the ammunition possible at this inhuman pain is overwhelming at times.  But that can have devastating effects in the long run.  It's like throwing gasoline on an already burning fire, ok?  I honestly worry that Daniel is SO much worse than need be because of all the chemical experimenting.  Please consider tapering and detox, ok?  Start from square one again and see if you can regulate him.  SO many people here have reported shorter, easier to manage cycles because they are either med free or only use abortives - no preventatives.  Verapamil and imitrex alone are well known to extend cycles and increase frequency.  Please - Annette - hear me on this.  

I hope you take this post the right way and know I'm only trying to help.  :-/

Margi

p.s.  one more thing:  we don't know much about the cause of cluster other than it is from a dodgy hypothalmus and a seratonin imbalance.  So, doesn't it make sense to try to go to the root and treat that imbalance.  I know you're against the illegal alternative and I'm not trying to push that.  However, these alternative options honestly do make the most sense because they do go straight to regulating seratonin.  Food for thought anyway.   :-/

edited to add:  I've just read Eric's (E-Double's) post on Zyprexa over on the meds board.  It does seem to be helping him, Annette - my apologies for not knowing that it is being touted as an abortive.  I still think, though, combining it with verapamil is very dangerous.  My apologies to  Eric if I've offended you with my Zyprexa comments.  Just goes to show ya that sometimes not all that you read on the internet is the last word, right?   :-/

Title: Re: Annette, How's Your Husband?
Post by BikerBob on Nov 9th, 2006, 2:56pm
If I was the supporter of a spouse who had cluster headaches, I would certainly encourage the clusterhead spouse to read this message board and post messages here.

BB

Title: Re: Annette, How's Your Husband?
Post by Linda_Howell on Nov 9th, 2006, 3:02pm


He has hysterical blindess Bob,  and for now is kinda of looking at the world through blurry double vision if I remember that right.  

I'm certain that Annette has read things to him from here though.

Title: Re: Annette, How's Your Husband?
Post by Giovanni on Nov 9th, 2006, 3:13pm

on 11/08/06 at 17:28:30, BB wrote:
Thanks everyone  :-*


On the other hand, the beast is morphing. The hits now are all over the place and totally random, not sticking to a timeframe like it used to . Thats why the question whether he is going chronic ?


At a certain point of my cycles mine does the same thing--goes from timeframe to random numerous hits.  The hits become less frequent and then disappears until the next time.

John

Title: Re: Annette, How's Your Husband?
Post by Linda_Howell on Nov 9th, 2006, 3:28pm

 I've been chronic for 19 yrs.  I have NEVER had a hit that wasn't random.  They have always been all over the place and never at the same time of day or night.


Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 9th, 2006, 3:36pm

on 11/09/06 at 14:56:06, BikerBob wrote:
If I was the supporter of a spouse who had cluster headaches, I would certainly encourage the clusterhead spouse to read this message board and post messages here.

BB


What exactly is your point?  My spouse doesn't post.  Neither does Ree's.  Neither does Jackie's.  



Title: Re: Annette, How's Your Husband?
Post by BikerBob on Nov 9th, 2006, 4:23pm

on 11/09/06 at 15:36:40, Margi wrote:
What exactly is your point?  My spouse doesn't post.  Neither does Ree's.  Neither does Jackie's.  


My point was that if I was the supporter of a spouse who had cluster headaches, I would certainly encourage the clusterhead spouse to read this message board and post messages here. I certainly didn't mean to denigrate supporters in any way.

BB

Title: Re: Annette, How's Your Husband?
Post by BikerBob on Nov 9th, 2006, 4:27pm

on 11/09/06 at 15:02:33, Linda_Howell wrote:
He has hysterical blindess Bob,  and for now is kinda of looking at the world through blurry double vision if I remember that right.  

I'm certain that Annette has read things to him from here though.


I googled "hysterical blindness". Annette, what's your husband doing for the treatment of his hysterical blindness?.

Also, how's the stitched-up head wound healing from that head banging?

BB

Title: Re: Annette, How's Your Husband?
Post by Jonny on Nov 9th, 2006, 4:29pm

on 11/09/06 at 16:27:14, BikerBob wrote:
I googled "hysterical blindness". Annette, what's your husband doing for the treatment of his hysterical blindness?.

Also, how's the stitched-up head wound healing from that head banging?

BB


The witch hunt continues  ::)

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 9th, 2006, 4:34pm
I know everytime I get hit with an 8 or above, something happens to me that could be classified as "hysterical blindness".  I literally can't see through the pain.

Title: Re: Annette, How's Your Husband?
Post by tanner on Nov 9th, 2006, 4:35pm

on 11/09/06 at 15:28:18, Linda_Howell wrote:
 I've been chronic for 19 yrs.  I have NEVER had a hit that wasn't random.  They have always been all over the place and never at the same time of day or night.

 Except for the fact that I have 1 year on ya Hun my story is the same ::)

Net Hug....Tim

Title: Re: Annette, How's Your Husband?
Post by Giovanni on Nov 9th, 2006, 4:45pm

on 11/09/06 at 16:34:58, thomas wrote:
I know everytime I get hit with an 8 or above, something happens to me that could be classified as "hysterical blindness".  I literally can't see through the pain.


Same thing here Thomas.

John

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 9th, 2006, 4:59pm
Annette told me that Daniel's hysterical blindness was a direct cause of the Zyprexa.  It is listed as one of the side effects.

Respectfully, Bikerbob - there ARE some sufferers who aren't computer inclined.  Trust me, those of us who's spouses don't read or post - we do pass the information along, I promise.  This issue SO isn't the part of the equation of this thread.  

Annette - please respond to the points I've addressed in my post above?  I'm deeply concerned about Daniel, that some doctor is treating him as a science experiment, with that laundry list of meds he's been on in such a short time.  Like I said, I firmly believe that's why he's gotten worse.   :-/

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 9th, 2006, 5:09pm

on 11/09/06 at 16:45:36, Giovanni wrote:
Same thing here Thomas.

John

I also do get quite hysterical as well.

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 9th, 2006, 5:12pm

on 11/09/06 at 16:59:10, Margi wrote:
some doctor is treating him as a science experiment, with that laundry list of meds he's been on in such a short time.  Like I said, I firmly believe that's why he's gotten worse.   :-/



happened to my wife and she went into a 13 month "cycle", so she was literally chronic for a year, thank God she is not being treated by that doctor and as two sufferer's together she has the wealth of my knowledge to draw on, and I her's,  not everything that works for me works for her.  But, we can definately try things in a rational approach to ease each other's suffering.  Too many meds in too short a time is a recipie for prolonged CH cycles, no quality of life and even death.  

Title: Re: Annette, How's Your Husband?
Post by BikerBob on Nov 9th, 2006, 5:35pm

on 11/09/06 at 16:59:10, Margi wrote:
Annette told me that Daniel's hysterical blindness was a direct cause of the Zyprexa.  It is listed as one of the side effects.


http://www.rxlist.com/cgi/generic/olanzapine_ad.htm

BB

Title: Re: Annette, How's Your Husband?
Post by Jonny on Nov 9th, 2006, 5:42pm

on 11/09/06 at 17:35:05, BikerBob wrote:
http://www.rxlist.com/cgi/generic/olanzapine_ad.htm
BB


And the point your making is, um, what?

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 9th, 2006, 5:47pm
Bob, I echo Jonny here.  If you've got something to say, please come out and say it.  I've just spent the last five minutes skimming the link you posted and it doesn't list hysterical blindness as a side effect.  

Annette told me about this a few weeks ago and I looked it up for myself right then.  The website I found DID list hysterical blindness as a side effect.  

Again....MORE TO THE POINT HERE is that Daniel is being seriously overmedicated and treated as someone's guinea pig!  Can we not just please address THAT instead of wandering off on tangents? :-/

Title: Re: Annette, How's Your Husband?
Post by nani on Nov 9th, 2006, 6:46pm
The only thing I found on Zyprexa and blindness was that Zyprexa can cause diabetes, which, untreated, can result in blindness.
Can you find that link, Margi? I don't want to recommend it to a newbie without a warning if hysterical blindness is a side effect.  :-/

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 9th, 2006, 7:31pm

Hysterical blindness is not a documented side effects of Lyrica. Lyrica visual side effects are blurry vision and double vision. The problem with Daniels vision started out as being blurry and seeing double and it started around the same time he got on Lyrica so it was thought to be due to the drug. When it continued to get worse we weaned him off the Lyrica to see if it would get better. It didnt and the Trigeminal neuralgia got worse so he went back onto it again.

Only when he saw the opthalmologist and had visual evoked test done that the cause was determined to be psychological and the diagnosis of hysterical blindness given. He is now attending the pain clinic and seeing the psychologist for that.


Margi,

I hear your concern and I have the same. I dont want him to be on medication if at all possible. However, what he is on at the moment is necessary. We saw 2 other neurologists in the past whom we dumped as they didnt seem to know what they were doing. He is seeing Prof Spira now who is very conservative with meds.

Daniel is learning how to abort with oxygen alone. He had not had much success with it in the past. He didnt get on the oxygen early enough. Secondly he was panicking a lot when he got hit and would not breathe properly for the oxgyen to work. I have spoken to Jonny, Richard, Michael, Pete, Chuck and several others on their experiences with oxygen to learn different techniques and tips. Daniel had a brief talk to Michael ( Wildhaus) about this too. I am hoping that once he gets the hang of aborting hits with oxygen he can reduce the meds he is on.

I have always encouraged him to come to the Board. He will once he can read the computer screen better. Now he has to strain to read the screen and that can worsen the headache. So I print things out for him to read instead.

Thanks all for your concern and support.

Painfree wishes to you.

Annette

Title: Re: Annette, How's Your Husband?
Post by alchemy on Nov 9th, 2006, 7:55pm
Annette, you sure as hell shouldn't have to defend yourself on a thread asking about your husband or any other thread. Sometimes i think the witch hunting around here goes to far. If people here don't like what i said FUCK OFF i don't like what you said.

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 9th, 2006, 8:22pm

on 11/09/06 at 19:55:52, alchemy wrote:
Annette, you sure as hell shouldn't have to defend yourself on a thread asking about your husband or any other thread. Sometimes i think the witch hunting around here goes to far. If people here don't like what i said FUCK OFF i don't like what you said.



:-*


Annette

Title: Re: Annette, How's Your Husband?
Post by nani on Nov 9th, 2006, 10:10pm

on 11/09/06 at 19:31:31, BB wrote:
Hysterical blindness is not a documented side effects of Lyrica.


Lyrica? I thought it was Zyprexa.  [smiley=huh.gif]

Title: Re: Annette, How's Your Husband?
Post by Kevin_M on Nov 9th, 2006, 10:18pm

on 11/06/06 at 16:49:42, BB wrote:
Daniel is on verapamil 360 mg twice a day, Lyrica 300mg twice a day

Zyprexa doesnt yet abort the whole attack but...



I see it's both.

Title: Re: Annette, How's Your Husband?
Post by nani on Nov 9th, 2006, 10:20pm

on 11/09/06 at 16:59:10, Margi wrote:
Annette told me that Daniel's hysterical blindness was a direct cause of the Zyprexa.  It is listed as one of the side effects.


Just want clarification...

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 9th, 2006, 11:43pm

Nani,

I think Margi got the 2 meds confused. It was Lyrica. Daniel only tried the Zyprexa after we read E2's post and asked the neurologist about it, 2 weeks ago. The hysterical blindness started way back in mid August.


Annette

Title: Re: Annette, How's Your Husband?
Post by Linda_Howell on Nov 9th, 2006, 11:58pm


Quote:
--------------------------------------------------------------------------------
Annette, you sure as hell shouldn't have to defend yourself on a thread asking about your husband or any other thread. Sometimes i think the witch hunting around here goes to far. If people here don't like what i said FUCK OFF i don't like what you said.


 I'm confused.  Defend what?

Margi just asked Annette some questions regarding her husband is all. She has concerns about his being used as test subject and she, and a LOT of  us... think the meds he's on right now, which seem considerable,  are a part of the problem.

 If I was new to this, I'd sure want Margi asking these questions. That's what we do here every day to try to help each other out.


Title: Re: Annette, How's Your Husband?
Post by Jonny on Nov 10th, 2006, 1:46am

on 11/09/06 at 22:20:39, nani wrote:
Just want clarification...


Why?....does she answer to you?

Is their a reason you are questioning her?

Annette, tell them to fuck off!!!!!

Title: Re: Annette, How's Your Husband?
Post by LeLimey on Nov 10th, 2006, 4:59am
Annette I don't know if in your O2 conversations anyone has mentioned staying on it after your hit has finished?

My own experience with O2 is that I use it at 15LPM to abort and I try (try being the operative word here!) to breath in and out counting to at least four each way. That's to stop me panic breathing and calm me down a bit. I'm not capable of thinking of numbers much past four but that works for me at least!
Once the pain I gone I stay on O2 for about another five minutes but I gradually reduce the LPM  and loosen the mask from my face so I'm reintroducing air slowly and its not a harsh change from pure, virginal o2 to common or garden old air!
I find that helps me stop the attack coming back and also it takes me five minutes to come back down to earth after being hit anyway and that stops others expecting anything of me when I'm too dazed (read more stupid than usual!) to deal with questions or how to get the cat out of the toaster or whatever.
Hope it helps
Helen

Title: Re: Annette, How's Your Husband?
Post by BB on Nov 10th, 2006, 6:36am

Thanks Helen

That helps a lot  :) .

We had been told to stay on oxygen after the pain went but your suggestion to slowly winding things down and reintroducing normal air is a great idea. Also counting to 4 is a good thing to do as I imagine it would help to focus but not too difficult to concentrate on.

Will print your post for Daniel to read.

Cheers

Annette


Title: Re: Annette, How's Your Husband?
Post by nani on Nov 10th, 2006, 9:55am

on 11/10/06 at 01:46:34, Jonny wrote:
Why?....does she answer to you?

Is their a reason you are questioning her?

Annette, tell them to fuck off!!!!!



Yes, there is a reason (actually 2)


on 11/09/06 at 18:46:52, nani wrote:
The only thing I found on Zyprexa and blindness was that Zyprexa can cause diabetes, which, untreated, can result in blindness.
Can you find that link, Margi? I don't want to recommend it to a newbie without a warning if hysterical blindness is a side effect. :-/


and...the newsletter is doing a story on Zyprexa.
I didn't realize I wasn't allowed to ask questions around here...  ::)

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 10:12am
Nani, Annette's right, I'm wrong - it was the Lyrica that we were talking about a few weeks ago, not the Zyprexa.  Too many med names for me - my fault.  :-/

Here's an article on Hysterical Blindness though...interesting.  

http://www.vdb.org/smackn.acgi$tapedetail?EKLEIPSIS

And here's the blurb on Lyrica - as Annette says, it can cause vision disturbances.

http://www.lyricapro.com/cwpb/appmanager/lyrica/lyricaDesktop?_nfpb=true&_pageLabel=lyrica_dpn_sideEffects

Lyrica is prescribed for diabetic nerve pain and seizures.  

Annette, I'm still concerned though about the two blood pressure lowering meds Daniel is on....verapamil and Zyprexa.  Have you checked his blood pressure since he's started combining these two?

Folks, I honestly am only questioning here because of all the meds he's on and how I've seen med cocktails make things SO much worse for my Mike.  Verapamil, I believe, totally extended the length of his cycles and imitrex drastically increased the frequency of his attacks.  When I hear of another clusterhead going down that same path I will ALWAYS try to offer our experiences.  I'm not on a witch hunt here - my concern is more for Daniel, ok?

Title: Re: Annette, How's Your Husband?
Post by nani on Nov 10th, 2006, 10:15am
Thanks, Margi.

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 10th, 2006, 10:35am

on 11/10/06 at 10:12:26, Margi wrote:
Folks, bI honestly am only questioning here because of all the meds he's on and how I've seen med cocktails make things SO much worse for my Mike.b  Verapamil, I believe, totally extended the length of his cycles and imitrex drastically increased the frequency of his attacks.  When I hear of another clusterhead going down that same path I will ALWAYS try to offer our experiences. b I'm not on a witch hunt here - my concern is more for Daniel, ok?


I realized that from the beginning.  And I'm not the sharpest knife in the drawer, but I am with you and support what you have/are doing for CH sufferers everywhere.  I did NOT detect any "witch hunting" in your questions, only real, genuine concern for someone's safety and well-being.   :-*

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 10:42am

on 11/10/06 at 10:35:33, thomas wrote:
I'm not the sharpest knife in the drawer


oh so many possible responses....   be nice now, Margi......  be a lady......back AWAY from the keyboard.


LOL :-*

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 10th, 2006, 12:22pm

on 11/10/06 at 10:42:46, Margi wrote:
oh so many possible responses....   be nice now, Margi......  be a lady......back AWAY from the keyboard.


LOL :-*

Bring it on, give it your best.  ;;D

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 12:33pm
[smiley=girlflash.gif]

bet you weren't expecting that were ya?  bet you're stunned into silence NOW, huh?  Yeah, well - you're a big man - it will take a lot to bring you down.  I therefore need to be crafty in my plan....

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 10th, 2006, 12:37pm

on 11/10/06 at 12:33:07, Margi wrote:
[smiley=girlflash.gif]

bet you weren't expecting that were ya?  bet you're stunned into silence NOW, huh?  Yeah, well - you're a big man - it will take a lot to bring you down.  I therefore need to be crafty in my plan....


Actually I expect that reaction from all women.  They are powerless against my charm.   ;;D  At least that's what the voices in my head tell me.  ;)

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 12:45pm

on 11/10/06 at 12:37:50, thomas wrote:
Actually I expect that reaction from all women.  They are powerless against my charm.   ;;D  At least that's what the voices in my head tell me.  ;)


ah, grasshopper, but you don't yet understand the nuance of the flash.... it can have SO many possible meanings.  In this instance, mine had naught to do with your charm.  

OK, well, maybe a little but I'm scared of your wife, so I'm going with the sass aspect of the flash.

Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 10th, 2006, 12:57pm

on 11/10/06 at 12:45:27, Margi wrote:
ah, grasshopper, but you don't yet understand the nuance of the flash.... it can have SO many possible meanings.  In this instance, mine had naught to do with your charm.  

OK, well, maybe a little but I'm scared of your wife, so I'm going with the sass aspect of the flash.


It doesn't matter what the context is, if I get to see boobies, then I win.  Period.  ;)

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 1:01pm
kewl....I went for the sass angle and I ended up getting the hypnotic 'let you think you won' angle.   Right where I want ya.  

I just LOVE it when a plan comes together.  



Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 10th, 2006, 1:17pm

on 11/10/06 at 13:01:11, Margi wrote:
kewl....I went for the sass angle and I ended up getting the hypnotic 'let you think you won' angle.   Right where I want ya.  

I just LOVE it when a plan comes together.  

Ha!  now I have let you think that YOU have won, because now you think that you have ME where you want me, but alas you have fallen for my deception.  You are now at my mercy.  ;)

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 1:23pm
yeah, yeah - show me a man who's not powerless about boobies and I'll show ya....well... a GIRL!  LOL

damn nice try though, Thomas - I'll give you an A for the attempt, feeble as it was.

[smiley=girlflash.gif]

see?  you're just a puddle all over again, aren't ya?








Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 10th, 2006, 1:29pm

on 11/10/06 at 13:23:07, Margi wrote:
yeah, yeah - show me a man who's not powerless about boobies and I'll show ya....well... a GIRL!  LOL

damn nice try though, Thomas - I'll give you an A for the attempt, feeble as it was.

[smiley=girlflash.gif]

see?  you're just a puddle all over again, aren't ya?







I am the boobie master.  All boobies will be bared for my inspection.  I quit being a puddle over boobies after I reached age 12.  But a nice pair of cheeks in tight pants does leave me in a catatonic state from time to time.  ;)

Title: Re: Annette, How's Your Husband?
Post by Margi on Nov 10th, 2006, 1:49pm
[smiley=moonwiggle.gif]

Never reveal your soft underbelly to your opponent, rookie.


Title: Re: Annette, How's Your Husband?
Post by thomas on Nov 13th, 2006, 9:50am

on 11/10/06 at 13:49:49, Margi wrote:
[smiley=moonwiggle.gif]

Never reveal your soft underbelly to your opponent, rookie.

What was that you said?  I can't concentrate right now.  ;)



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