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Not everything always works. (Read 4581 times)
Agostino Leyre
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Not everything always works.
Nov 8th, 2010 at 2:43pm
 
Since I've been using melatonin, there have been 3 cycles where it hasn't worked for me, this has been one of them.  In fact, this time around it seems to have given me more night-time hits.  Last night I didn't take it and was able to get about 4 hours of continuous sleep.  The nights that I've been taking it, I could sleep for 1 hour and then be up for an hour and a half with a CH, then sleep for 1 hour and repeat right up until about 5:00 am then I could sleep without any pain, but not for long as I have to get up and go to work. 

With that being said, I will still continue to use it, as it does work more often than not, it just seems like this particular brand is not effective. 

I have yet to come across the "silver bullet", but will continue to search and learn what works for me. 

Wishing you all the best.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Agostino Leyre
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Re: Not everything always works.
Reply #1 - Nov 8th, 2010 at 3:18pm
 
Yes that is one thing I have learned in my years of experience in dealing with this, patience and not panicing are two of the most powerful tools you can have in your arsenol. 

As far as exploring goes, I think I've tried just about everything that I want to try, and will just adjust my strategy until the adjustment becomes ineffective.  This is truly a learning process and the more receptive we are to learning, the better our chances at success, though that success is often limited at best.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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George
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Re: Not everything always works.
Reply #2 - Nov 8th, 2010 at 4:46pm
 
Agostino Leyre wrote on Nov 8th, 2010 at 3:18pm:
This is truly a learning process and the more receptive we are to learning, the better our chances at success, though that success is often limited at best.


Very perceptive--and true to my own experience, Thomas.  I have yet to discover anything that will completely eliminate attacks during a cycle or end a cycle altogether, although some things and approaches have clearly reduced the number and severity of attacks. 

Some things I was prescribed clearly had the opposite effect.  Longer cycles, and more frequent attacks.  (Sansert, narcotic pain medications, etc.)  Medical advice or not, I gave them up as a bad job. 

We do react differently to what is essentially a toolkit of blunt instruments.  Prescribed or not.  The only way to discover what works to make the thing at least livable is experience and time--and it changes up on us, to boot.   Tongue

Best wishes,

George
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Re: Not everything always works.
Reply #3 - Nov 8th, 2010 at 5:28pm
 
I see that frustration expressed on both sides of the equation. Like yours, the frustration at a med that stops working. And the other side of the coin, people pushing what worked for them, with an almost evangelical zeal! Always good to step back, take a deep breath, and remember how different we all are! Hoping you get some pain free time soon Thomas.

Joe
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Re: Not everything always works.
Reply #4 - Nov 8th, 2010 at 11:43pm
 
Sorry it isn't working for you my friend.  Glad to see you though.  Miss you around here.

Jerry
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Re: Not everything always works.
Reply #5 - Nov 9th, 2010 at 7:20am
 
Agostino Leyre wrote on Nov 8th, 2010 at 3:18pm:
As far as exploring goes, I think I've tried just about everything that I want to try, and will just adjust my strategy until the adjustment becomes ineffective.  This is truly a learning process and the more receptive we are to learning, the better our chances at success, though that success is often limited at best.


I agree completely and I think I understand what you are saying. One does tire of trying the latest thing. On the other hand, it's probably a good thing to at least read what has worked for some but hasn't yet been tried by you, or me when it's me in the doldrums. A list of new irons that could go into the fire (mental or actual) isn't altogether a bad thing. I pray you will find some relief soon. God bless! lance
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Agostino Leyre
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Re: Not everything always works.
Reply #6 - Nov 9th, 2010 at 2:55pm
 
wimsey1 wrote on Nov 9th, 2010 at 7:20am:
Agostino Leyre wrote on Nov 8th, 2010 at 3:18pm:
As far as exploring goes, I think I've tried just about everything that I want to try, and will just adjust my strategy until the adjustment becomes ineffective.  This is truly a learning process and the more receptive we are to learning, the better our chances at success, though that success is often limited at best.


I agree completely and I think I understand what you are saying. One does tire of trying the latest thing. On the other hand, it's probably a good thing to at least read what has worked for some but hasn't yet been tried by you, or me when it's me in the doldrums. A list of new irons that could go into the fire (mental or actual) isn't altogether a bad thing. I pray you will find some relief soon. God bless! lance

I do read, and I've tried just about everything except for lithium and surgery.  I think some of you may have misinterperated what I tried to say with my OP, or I didn't do a good enough job of making it clear.  You will rarely see me post a "cry for help" or "at wits end" post, as I have reached a point in my experience with this thing where I don't have those types of reactions anymore.  I am not saying that those types of reactions are a bad thing, because I had YEARS where I felt like I had no control over this thing or my life because of CH.  I was just simply trying to relate the attitude that because something works well today doesn't mean that it will work well tomorrow, and the converse is true, just because something doesn't work today, does not mean that it will not work tomorrow as well. 

We have to be ever vigilant in our struggle, continue our education and try to educate those who "treat" us.  I am open to anything that, in my opinion has a good chance of working, however there are certain treatment programs that I will no longer consider as viable options due to my own discoveries.  I do believe that there are certain preventive and abortive meds that may work in the short run, only prolong the "cycle" or even make one a chronic if taken too long.  Those meds and treatments, I will not use. 

But then we come back to the whole "everything does not work the same for everyone" conondrum.  Which sadly, is too true. 

The fortunate thing about many years of experience with this thing, is that I do have quite the arsenol of treatment options that I can throw at it.  And I've also found that in some rare instances, the best offense is no treatment at all.  Call me crazy, but the last two nights have been the best and the only thing I've taken is excedrin for shadows. 

I will always endevour to perservere, because the alternative is not very appealing.  May you all find peace and comfort.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Not everything always works.
Reply #7 - Nov 9th, 2010 at 4:07pm
 
this is interesting guys.
what works for me one month usually wont work for the next but might work the month after.  my treatments seam to work best being consistency changed- rotated.   
one week caffeine and ice might work well the next week i might need a different approach.   all i know is it never stays the same... the beast wears a different dress to every party....   

have a well managed day

xR
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Re: Not everything always works.
Reply #8 - Nov 10th, 2010 at 1:09pm
 
I can relate to this as last cycle I had considerable success using melatonin in increasing doses--was able to fool the beast here and there.  This time around--definitely does not seem to be having any preventive effects if last night is a reflection.  I plan to take a lower dose tonight and I am also throwing in some benadryl until I see the neuro tomorrow. Don't know if you have tried that, but the quality of sleep it gives seems to sometimes be able to trick the beast (if that makes sense).  But you are totally right that this thing morphs and different cycles different things work, gotta experiment I guess.
Glad you are having some relief after cutting down on melatonin--that is awesome!
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Re: Not everything always works.
Reply #9 - Nov 10th, 2010 at 2:38pm
 
Thomas,

You've started a great thread and topic.  Like so many other cluster headache sufferers, I've had the exact same experience with cluster headache meds that worked for a while then didn't. 

I've even found oxygen therapy at flow rates that support hyperventilation took longer at times to bring about an abort.  That raised my angst a lot as that is all I've used since 2005 save for an occasional snort of imitrex nasal spray during air travel.

In early 2008 I started asking myself the burning question, Why this was happening?  Was it something I was or wasn't eating or drinking that caused the increase in the frequency and intensity of my cluster headaches...  At that point, Michael Berger a.k.a. Wildhaus, and I went about a disciplined process of looking for possible factors why this was happening.

I don't have all the answers to why this happens, but I did start focusing on two potential factors that we as cluster headache sufferers might be able to do to control or influence to some extent the frequency and intensity of cluster headaches.  These included simple changes in diet along with the addition of certain vitamins and mineral supplements...

In particular, the two factors I focused on were arterial pH and general inflammation from possible allergic reactions. 

If arterial pH is low, (below 7.4) there appeared to be an increase in the frequency and intensity of my cluster headaches.  Oxygen therapy abort times also increased. 

As arterial pH and blood gas measurements are only done in a clinical environment, I started logging the pH of my saliva as an analog of arterial pH using pH test strips from pH ION. 

Although there's a difference between arterial pH and that of saliva, saliva pH tends to parallel arterial pH and lags by 10 to 15 minutes as it takes that long for the salivary glands to be flushed with arterial blood and the changes equalized with changes in arterial pH.

My rationale for looking at arterial pH stems from the fact that the body reacts to changes in arterial pH and CO2 levels with a process called homeostasis where it changes the diameter of the arterial vascular system and respiration in order to keep arterial pH and CO2 levels in a normal range. 

For example, if the arterial pH is lower than normal, (it doesn't take much of a shift), the body interprets this low pH condition as too much CO2 so dilates the arterial vascular system and increases the respiration and heart rates to move more blood through the lungs remove the excess CO2.

As the pathophysiology of a cluster headache and triggering mechanism are associated with a dilation of the vascular structures in and around the trigeminal nerve, it stands to reason that anything increasing the level of vasodilation also tends to support an increase in the frequency and intensity of cluster headaches.  When you stop and think about it, we take imitrex and use oxygen therapy to induce vasoconstriction to abort the cluster headache.

What I was looking for was a trend either side of normal with respect to the frequency and intensity of my cluster headaches.  To do this, Michael Berger and I joined forces with Royce Fishman to undertake a pH study by taking saliva pH measurements three times a day over a two week period logging cluster headaches to determine if any relationship existed with changes in pH. 

I took the first pH measurement in the morning before breakfast, the second before lunch, and the third just prior to going to bed.  I then averaged the three daily measurements to come up with a daily average saliva pH reading.

In order to eliminate as many variables as possible associated with these pH measurements, I tried to take the measurements at the same time each day and I rinsed my mouth with water then waited 5 minutes before taking the pH measurement to avoid any influence from food or drink.

I also took a pH measurement upon waking with a cluster headache and again five minutes after I'd completed an abort with oxygen therapy.  A week into these measurements I also added oxygen saturation levels measured with a finger pulse oximeter upon waking with the cluster headache before starting oxygen therapy and again 5 minutes after the abort with oxygen therapy. 

The following chart shows the results:

I was coming out of a low cycle at the time where I averaged 3 to 4 cluster headaches a week.  I only took pH measurements for the first attack of the night and as you can see in the chart below, there were several nights where I had no attacks. 

The red dots and lines represent the saliva pH and SpO2 measurements upon waking with a cluster headache and the blue dots and lines the the saliva pH and SpO2 measurements taken five minutes after completing oxygen therapy to an abort.

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As you can see from green line on the chart, my daily average saliva pH dropped over the two week period. What the chart doesn't show is that I started having more than one attack a night any time my average pH was 6.50 or below.  On night of Day-14 I had four cluster headaches.

Based on the results of these pH measurements, I started a regimen of calcium citrate tablets that contain vitamin D3, magnesium and zinc each day washed down with a big glass of homemade lemonade or Baja Bob's sugar free margarita mix.  The thinking here was this regimen acts as a buffer on the stomach's gastric juices with the ultimate result, a slight elevation in arterial pH that that might just decrease cluster headache frequency and intensity.

I've used this regimen several times with success each time I started into a high cycle.  A few others have tried it as well with similar results.

If you buy into the vascular nature of cluster headaches and that increases in vasodilation and inflammation from any cause can also affect the frequency and intensity of cluster headaches, then anything you can take or eat that reduces inflammation in and around the trigeminal nerve could possibly reduce the frequency and intensity of cluster headaches.

To test this hypothesis I began taking Omega-3 Fish Oil and vitamin D3 supplements (3000mg a day of the Omega-3 Fish Oil gelcaps and 10,000 IU of the vitamin D3).  Omega-3 Fish Oil and vitamin D3 are both recognized as very effective anti-inflammatory agents. 

A daily dose of 10,000 IU of vitamin D3 is high by present FDA standards, but a growing number of nutrition experts think differently.  A paper, published in the American Journal of Clinical Nutrition (AJCN) concludes the safety profile of vitamin D should safely permit raising the Upper Intake Level (UL) for vitamin D to 250ug (10,000IU) per day from the current UL of 50 ug (2,000IU) per day.  The absence of toxicity in the trials conducted in healthy adults that used a dose of 10,000 IU vitamin D3 supports the confident selection of this value as the UL.

I also changed my diet while on this regimen by cutting down on complex carbohydrates, red meat and cooking oil and started eating more whole grain cereals for breakfast, salmon, cold water fish, chicken, with lots of fruit, green veggies and salads.  I also dressed my salads with olive oil and lemon juice dressing... 

I started this regimen around the 4th of October while averaging 4 cluster headaches a night and two nights later I was pain free.  I'm still pain free...

Now the results from my use of this regimen could easily be a coincidence and are clearly anecdotal.  It could also be yet another, albeit pleasant example of how cluster headaches change...

In any event, this is the first time I've gone more than two weeks pain free since I started my last episodic cycle in
April of 2004. That cycle never ended and I was diagnosed as a chronic cluster headache sufferer a year later.

The following links may be helpful if you're interested.  Having said that, I do need to make the following obligatory disclaimer:

I'm not a doctor and I've provided this discussion for information purposes only.  You should discuss these two regimens with your PCP or neurologist before trying them.

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Hope this helps or at least provides food for though.

Take care,

V/R, Batch
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« Last Edit: Nov 11th, 2010 at 4:55am by Batch »  

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Re: Not everything always works.
Reply #10 - Nov 10th, 2010 at 2:59pm
 
that is fascinating    Batch  thank you so much for posting this information   




   

Is there a similar study like this around anywhere on 
blood pressure / glucose/. Serotonin blood levels of ch patients ?

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Re: Not everything always works.
Reply #11 - Nov 10th, 2010 at 10:20pm
 
I think that post by Batch should become one of the "links on the left" that we point people to.

Maybe it should replace the water X 3 link?
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« Last Edit: Nov 10th, 2010 at 10:22pm 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.
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Re: Not everything always works.
Reply #12 - Nov 15th, 2010 at 8:20am
 
Begeeber, I requested the same thing a few days ago- I think this really needs a tab.
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Re: Not everything always works.
Reply #13 - Nov 15th, 2010 at 9:51am
 
It's being worked out, the discussions revolve around the following:

Should it get it's own sticky?  If so, do we dump a current sticky? When you get too many sticky's it gets cluttered and the sticky term loses its usefulness. Should it go in the oxygen info tab that already exists? Should there be a new section called something like "Hall of Fame Posts" where posts like this will get stored?

Stand by to stand by! Wink

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Re: Not everything always works.
Reply #14 - Nov 15th, 2010 at 12:01pm
 
IMO it should go into either the O2 tab, or it should have a tab on the left of its own (also linked to from within the O2 info).

Rreplace the "water x 3" with it?
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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.
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Re: Not everything always works.
Reply #15 - Nov 15th, 2010 at 1:15pm
 
Thanks for the very informative post, Batch.  The vitamin D aspect is really intriguing, as I do think decreased exposure to the sun is a major player in my CH.  As far as the diet goes, it does make good sense to eat as healthy as we can.  I will look into getting the supplements and some baja bob's.  Hopefully I can have a fraction of the sucess that you have gained.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Not everything always works.
Reply #16 - Nov 15th, 2010 at 2:02pm
 
Guiseppi wrote on Nov 15th, 2010 at 9:51am:
It's being worked out, the discussions revolve around the following:

Should it get it's own sticky?  If so, do we dump a current sticky? When you get too many sticky's it gets cluttered and the sticky term loses its usefulness. Should it go in the oxygen info tab that already exists? Should there be a new section called something like "Hall of Fame Posts" where posts like this will get stored?


What could be useful is a new section which is read only for all but moderators / site admin which would contain info on many of the things that people frequently ask about. This would be a great place for people new to CHs to rapidly read a few posts to get up to speed and as a reference for the rest of us.

Some good posts could include:
  • Batch's additives info
  • Melatonin
  • Energy drinks
  • Kudzu
  • Finding a headache specialist
  • Bob's latest research


Each post would be a concise accumulation of the main info on the area. If people want to discuss it then they can do so in the normal forum.

Over time the posts would be edited and updated as our knowledge improves.

This would avoid the sticky overuse. It's also possible that some of the stickies could be migrated to this forum as it would effectively be a sticky forum.
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Re: Not everything always works.
Reply #17 - Nov 15th, 2010 at 2:12pm
 
Yeah I have lobbied Deej in the past about the melatonin, I do think it is something that people should know about.  It is cheap and very effective for some.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Not everything always works.
Reply #18 - Nov 15th, 2010 at 6:14pm
 
Thank you all for the kind words and the effort to make that post a bit more permanent... For the record, I'm now 35 days and nights PF and counting...  again longer than I've ever gone PF by more than two weeks!

This can still be a fluke, purely coincidental, or just another example of the way the beast can change...  Above all...  it's still very anecdotal...  (A lot more folks need to check first with their PCPs or neurologists, then try it and tell us how it works).

Having said that, I tested the water and skipped taking the 3,000mg Omega-3 Fish Oil and 10,000IU Vitamin D3 one morning...   That night around 02:00, I could feel the beast creeping up on me so I got up, downed the daily dose of this regimen, then did some deep breathing with good old room air....  The hit never developed.

That was 3 days ago... and I'm still in uncharted waters... Go figure...

Take care and thanks again for the kind words and thoughts.

V/R, Batch
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Re: Not everything always works.
Reply #19 - Nov 16th, 2010 at 7:50am
 
Agostino Leyre wrote on Nov 8th, 2010 at 3:18pm:
the more receptive we are to learning, the better our chances at success, though that success is often limited at best.


wimsey1 wrote on Nov 9th, 2010 at 7:20am:
new irons that could go into the fire



Having once been complacent with what helped for a time, it turned out a change became a dire need.  This place is good for ideas to be alternately armed and supportively inspiring to take that step.
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Re: Not everything always works.
Reply #20 - Nov 16th, 2010 at 8:06am
 
Mike NZ wrote on Nov 15th, 2010 at 2:02pm:
Guiseppi wrote on Nov 15th, 2010 at 9:51am:
It's being worked out, the discussions revolve around the following:

Should it get it's own sticky?  If so, do we dump a current sticky? When you get too many sticky's it gets cluttered and the sticky term loses its usefulness. Should it go in the oxygen info tab that already exists? Should there be a new section called something like "Hall of Fame Posts" where posts like this will get stored?


What could be useful is a new section which is read only for all but moderators / site admin which would contain info on many of the things that people frequently ask about. This would be a great place for people new to CHs to rapidly read a few posts to get up to speed and as a reference for the rest of us.

Some good posts could include:
  • Batch's additives info
  • Melatonin
  • Energy drinks
  • Kudzu
  • Finding a headache specialist
  • Bob's latest research


Each post would be a concise accumulation of the main info on the area. If people want to discuss it then they can do so in the normal forum.

Over time the posts would be edited and updated as our knowledge improves.

This would avoid the sticky overuse. It's also possible that some of the stickies could be migrated to this forum as it would effectively be a sticky forum.


For what it's worth, my opinion is that The Hall of Fame Posts is a great idea, and I second what Mike has suggested. I would also consider a post that describes the link between CHs and depression, since so many come to this site looking for a connection and possible avenues of address. God bless! lance
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Re: Not everything always works.
Reply #21 - Nov 17th, 2010 at 2:44pm
 
Quote:
"Hall of Fame Posts" where posts like this will get stored?


You amaze me sometimes Sarge. What an absolutely groovy idea.
Good post, I too have noted over the years that previously successful treatments soon fail. Even ones that are very effective. Now switching up treatments moving from one to another after a detox period until one finally works or the HA does it's thing on it's own.
what a deal Cheesy Headbangers rock!
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« Last Edit: Nov 17th, 2010 at 2:45pm by N/A »  
 
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Re: Not everything always works.
Reply #22 - Nov 17th, 2010 at 3:46pm
 
Quote:
Quote:
"Hall of Fame Posts" where posts like this will get stored?


You amaze me sometimes Sarge. What an absolutely groovy idea.
Good post, I too have noted over the years that previously successful treatments soon fail. Even ones that are very effective. Now switching up treatments moving from one to another after a detox period until one finally works or the HA does it's thing on it's own.
what a deal Cheesy Headbangers rock!

The detox period is something that is often overlooked, but should be implemented in our regimes.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: Not everything always works.
Reply #23 - Nov 17th, 2010 at 4:05pm
 
I wish i could yake credit for the hall of fame suggestion, that was Bee-yul's (Racer) idea!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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