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Cluster HA and FMS (Read 1287 times)
morningglory
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Cluster HA and FMS
Nov 20th, 2009 at 3:15pm
 
I am new to the site.  Was diagnosed today. I am 40Y old and have had many many years of headache trouble. Previously diagnosed with migraines, but for the past 3M HA's have been different. Feeling like I could pull my right eyeball out of socket to stop the pain.  I am a single mom with a 10Y old daugher and custody of grandkids ages 1Y and 2Y.  Also was diagnosed with Fibromyalgia 8Y ago.  Wondering if anyone has FMS and cluster headaches.  How do u dealing with the pain in head, pain in body and a very busy lifestyle?  Just need some encouragement.  So glad to have found this site.  Smiley Smiley
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lorac
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Re: Cluster HA and FMS
Reply #1 - Nov 20th, 2009 at 3:38pm
 
YIKES...you do have your hands full.

Glad you found us here,  sorry you had to though.

Sounds like you could use a long vacation too. Smiley

   Read all you can here, and I am sure you will find some great tips.
   Do you have an rx for Oxygen...It is the best way to handle the HA from hell.    I don't know much about FM, but I wonder if the O2 would help that some way??
  Stick around, and someone is bound to have an answer for ya.          lorac
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bejeeber
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Re: Cluster HA and FMS
Reply #2 - Nov 20th, 2009 at 9:56pm
 
Wow. Now that's an incredible daily challenge you have there if I've ever heard of one.  Shocked

The only thing I can think of to suggest about dealing with CH is to get as educated here as possible about it because doing so has been enabling people to cut way back, or in some cases, pretty much eliminate the need to deal with the pain, since the attacks are prevented/aborted.

I sure hope the latest approach to using O2 will help you as much as it has helped so many others 'round here. This is it: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Then there are back up strategies for aborting attacks if O2 isn't handy, or isn't working, one of them being 1/3 to 1/2 dose Imitrex injections, info here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Hang in there MorningGlory, and I think the rest of us should get busy now forming a committee to nominate you for a congressional medal of honor.  Shocked
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« Last Edit: Nov 20th, 2009 at 11:50pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Joni
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Re: Cluster HA and FMS
Reply #3 - Nov 21st, 2009 at 3:03am
 
morningglory wrote on Nov 20th, 2009 at 3:15pm:
I am new to the site.  Was diagnosed today. I am 40Y old and have had many many years of headache trouble. Previously diagnosed with migraines, but for the past 3M HA's have been different. Feeling like I could pull my right eyeball out of socket to stop the pain.  I am a single mom with a 10Y old daugher and custody of grandkids ages 1Y and 2Y.  Also was diagnosed with Fibromyalgia 8Y ago.  Wondering if anyone has FMS and cluster headaches.  How do u dealing with the pain in head, pain in body and a very busy lifestyle?  Just need some encouragement.  So glad to have found this site.  Smiley Smiley


Saw this online as I was searching possible side effects of O2.  I don't know much about it...just passing this along.


    * One of the common causes of oxygen therapy side effects is due to the equipment used for oxygen supply. Many times, due to improper handling of the equipment, the oxygen supply gets contaminated which can cause several health problems and possible death too. Also, if the filters are not cleaned or if the breathing tubes are not changed regularly, this can cause patients to inhale oxygen that is polluted by air borne particles.
    * People who have undergone hyperbaric oxygen therapy have complained about feeling tiredness and nausea after the treatment session. They may also experience temporary vision problems and sometimes slight difficulty in breathing after undergoing this therapy. Severe pain in the ear and sinus problem are also known to occur due to increased pressure in the oxygen chamber. However, these side effects are not permanent and do not stay "Side Effects of Oxygen Therapy

Health professionals are of the opinion that oxygen therapy is a very safe treatment method, however, there have been reports of side effects from several patients. Most of the times, these side effects are very minor and do not last for a long time. Nevertheless, there have been cases (though very rare) where oxygen therapy has led to severe side effects.
for a long time.
    * One of the serious hyperbaric oxygen therapy side effects is caused due to oxygen toxicity which can cause pulmonary and central nervous system disorders as well as seizures. Some people have also reported to have experienced a feeling of claustrophobia in the oxygen chamber.
    * Home oxygen therapy side effects can be caused when the individual tries to alter the flow of oxygen by himself. This has to be avoided completely and if you think that the oxygen supply that you are getting is not adequate, your health professional should be contacted who in turn will inform the home care supplier to change the oxygen flow rate.
    * Another cautionary measure for people using home oxygen therapy is to keep the oxygen equipment at a distance not only from heat sources including gas stove, candle flame, etc., but also from hair sprays, aerosol cans, etc. because these are inflammable.
    * Apart from this, severe oxygen therapy side effects can be experienced by people who have health problems, like, asthma, upper respiratory tract infection, middle ear surgery, etc. and hence they should stay away from this treatment method. Even pregnant women should not be given this therapy as this can cause harm to the mother as well as to the fetus. Other than this, the condition of people who have high fever or some kind of viral fever may worsen due to oxygen therapy.

These oxygen therapy side effects are very rare and most likely do not cause any permanent damage. However, being aware of the possible side effects will help individuals in preventing or controlling the causes that trigger them."   

My point is that if I were pregnant, I would ask my OB/GYN to investigate this.

Try simple daily full body stretching for Fibromyalgia.  You probably already know that.  Massage is good for that as well.  Get those knots out!

Good luck, hope you have some help!
Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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deltadarlin
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Re: Cluster HA and FMS
Reply #4 - Nov 21st, 2009 at 9:27pm
 
Who's pregnant?
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
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Joni
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Re: Cluster HA and FMS
Reply #5 - Nov 21st, 2009 at 9:40pm
 
Oops, that was for a different thread!  I was in a hurry...sorry!  No one is pregnant here.
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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Joni
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Re: Cluster HA and FMS
Reply #6 - Nov 21st, 2009 at 9:44pm
 
It's on the correct thread, now.
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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lorac
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Imagine


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Re: Cluster HA and FMS
Reply #7 - Nov 22nd, 2009 at 9:22am
 
Joni wrote on Nov 21st, 2009 at 9:40pm:
Oops, that was for a different thread!  I was in a hurry...sorry!  No one is pregnant here.


whoa...you must have scared a few folks! lol lol
   that was funny joni   .
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angela.lambert
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Re: Cluster HA and FMS
Reply #8 - Nov 22nd, 2009 at 7:59pm
 
Hello! You have your hands full! Not much room for you to be ill.
Welcome, this site was a Godsend when I found it.  I cried for two days.  It was 13 yrs of these darn headaches, and no one to relate to.

Get the O2! It works with no side effects. It's my number one.  Just got my Big Ol' Boy 2 days ago, just started my cycle.

My "CH cocktail"
As my preventative, I use Verapamil - 320mg a day, and when the O2 doesn't work to abort my CH, or when I am not home I use Imitrex (shot), and I use the Imitrex tip on the side menu on this site.  It is expensive, and it is only offered in a higher dose than some of us need. I use 2mg of the 6mg shot.

Keep reading and ask questions, you will find much more than you expected. 
The best discovery I made is: People who understand you!  Wink

Angela
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Jrcox
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Re: Cluster HA and FMS
Reply #9 - Nov 22nd, 2009 at 11:35pm
 
You do have your hands full. Sorry you had to find us, but welcome. This site makes all the difference. We got 02 and many various drugs to deal with the pain. Then you have this site to deal with the frustration the attacks causes. All the sleepless nights, explaining to non sufferers, the weird looks from strangers when you getting hit in public, the " I get headaches too" comments. Feels good to log in and know we all understand. I wish you PFDAN.

Jrcox
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Jrcox jasonandmason jasonandmason@me.com jasonandmason  
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