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Remission (Read 5601 times)
sabine
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Remission
Nov 26th, 2017 at 1:28am
 
Hi all!

New here but hoping for some insight -

Is it possible/usual to have a remission period of 4 years?
I suffered for over 10 years, had a sinus surgery and tooth extraction 4 years ago and the CH miraculously stopped. I was hoping i was originally misdiagnosed and didn't have CH after all... but now it's back. After 4 years. How is that possible?
Feeling scared.

Thanks for any input!
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AussieBrian
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Re: Remission
Reply #1 - Nov 26th, 2017 at 3:03am
 
Welcome, Sabine, and certainly there can be long distances between individual cycles.  It's so easy to believe they're gone forever only to get that little tap on the shoulder to say,  "Hello, it's me again.  Wanna dance?"

Now is the time to make sure you're properly prepared with your armoury well-stocked and all the world's-bestest information available right here for free.

Tell us your story  (we love stories)  and we'll help you every way we can.

We care.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Racer1_NC
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Re: Remission
Reply #2 - Nov 26th, 2017 at 12:19pm
 
Yes...it is possible. Has that happened to you? Not enough information to make an educated guess.
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“We see what we believe, not the other way around." — Varga
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Mike NZ
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Re: Remission
Reply #3 - Nov 26th, 2017 at 2:46pm
 
Hi and welcome Sabine

CH is in many ways predictable and unpredictable. We have the contrast of some people getting their CHs at the same time each day and others experiencing so much changing, from the time, which preventive works, what dose is effective and how long between cycles.

Whilst the majority will get their cycle(s) each year, commonly spring / autumn (fall), others can see gaps between cycles of several years with some going multiple years. So whilst a gap of 4 years is relatively long and less common, unfortunately it doesn't mean that CH is gone.

Tell us more about you and your CH. Are you working with a headache specialist? Have you got an effective preventive / abortive for your CH?

Read up as there is a lot of info here and ask all the questions you can think of.
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sabine
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Re: Remission
Reply #4 - Nov 26th, 2017 at 4:03pm
 
Hi,

Thank you so much for your responses.
You may be sorry you asked for my story.....

I am almost 38 years old, female, born and currently living in South Africa.
At 22 years old, I moved to London. About a year later, I was woken from sleep with SEVERE pain in the right side of my head. It was so sudden and so sharp, I actually thought I must be dying and rushed to the A&E - where I waited over 8 hours to be seen - and of course by then the pain had gone and I felt I must've imagined it all, especially with the disbelieving looks from the doctors. I was sent home with a panadol.

Unfortunately, I endured this pain unmedicated and not really taken seriously by any doctors for the next 3 years. I figured out myself that it came in cycles. I also tried every over the counter drug imaginable. From muscle relaxants to painkillers, and finally to sinus medicine which was the only (small) relief I had (I think it's the ephedrine that helps though I still don't know why).

This led to ENT investigation. I had a deviated septum and some benign polyps which they thought may contribute to the pain, but sent me on to the dentist, where, over the years, I had FIVE root canals in the right side.
I still thought I was dealing with sinusitis and tooth problems at that point.

I also soon figured out that there were triggers when i was in a cycle.... change in temperature (the heater next to my desk at work was a killer), alcohol (even a sip), and straight after exercise.

In 2010 I became pregnant (no attacks the whole pregnancy! - but I made up for that straight after  Roll Eyes)
When my daughter was about 6 months and I was alone with no help with my baby, I was so desperate that I paid privately for a GP referral to a neurologist.

I told the neurologist that what I was experiencing was more painful than childbirth (I had a 26 hour, complicated, unmedicated and very painful birth).
It was almost immediately after describing my pain that he gave it a name: Cluster headaches. I'd never heard of it before. It sounded too benign to describe it, but when I read up on it later, I cried with the relief of the diagnosis. I had a plan - sumatriptan injections - which I carried always.

In 2012, I moved back to South Africa, where the attacks continued, along with very bad sinus issues. I had emergency sinus surgery because it was so infected. The ENT thought it strange that my sinus issues were strictly on one side. He said usually patients with sinus disease are affected on both sides, and on that basis, sent me for a dental cone beam scan. The scan showed that an old root canal had not been properly filled and was causing infection. I had the tooth extracted in December 2013. A few months later I had a dental implant.

And so I thought that was it. It WAS the tooth after all.
And I have had almost 4 years since then not one attack, thinking the problem had been solved.

And then...
3 weeks ago. Awoken an hour after going to sleep - after 2 hours of pain, I went to the ER.

As soon as it started up, I went back to the ENT and the Periodontist who treated me, had a CT scan, had a cone beam scan. I was convinced something had gone wrong with the tooth or sinus again to be experiencing the exact same pain again. But there is nothing with with my sinus or my implant.

I wrote here because I didn't think it possible to have absolutely nothing for 4 years and then randomly start up again. I don't know what to expect next? Is it wishful thinking to think this is just a random flare up and it will go away again?

If you made it this far, thanks for reading and sorry about the rambling!

Sabine
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sabine
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Re: Remission
Reply #5 - Nov 26th, 2017 at 4:14pm
 
P.S. @Mike NZ
I haven't seen any headache specialists but am going to a neurologist appointment tomorrow.

In the meantime, my GP gave me a 5 day course of prednisone, Maxalt wafers and sumatriptan injections.
I think the steroids stopped the cycle as I have only had to use the maxalt and sumatriptan once. She also advised taking 2 disprin and panadol right at the start of the headache, which seems to help a bit. I have also reverted to pseudoephedrine (demazin) as a preventative. (I sound like a druggie here but I promise Im not!  Cheesy)

The maxalt made me feel completely high, woozy and 'out of body' for almost 2 days after taking it. Is that normal?

Thank you SO much for taking the time to help me!
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Mike NZ
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Re: Remission
Reply #6 - Nov 26th, 2017 at 8:12pm
 
Quite a detailed summary of what all too many people with CH have to go through. It is fairly typical for most people to take years of pain to get to a diagnosis. You seem to have gone through a lot of the common things like tooth problems, sinus problems, etc. that so many have also done.

The pregnancy stopping attacks is something that a lot of people have commented on happening to them, so nothing at all unusual with it giving you a 9 month break. And the fact that your headache pain was worse than a complex, painful birth also shows the level of headache pain you've been having

Similarly the triggers you have identified seem to be pretty typical of CH.

But given your history it really needs a neurologist with good experience of complex headaches to give the definitive diagnosis which will result in the right treatment. Part of the diagnosis is in matching the symptoms to CH but the complex bit is in ruling out every other possible cause, with there being multiple other things that can give the exact same symptoms.

What you've described is consistent with CH, but it needs that final step of ruling out any other cause.

Assuming it is CH, then you're most likely to have a cycle followed by another gap to the next cycle which could be months or years later. Past cycle gaps can often predict things but not totally reliable.

Great that you've an appointment tomorrow. What I'd do is to write some notes beforehand, based on your history, plus any questions you want to ask. Then during the appointment update your notes, write down answers and you'll avoid remembering something 5 minutes after the appointment.

Your GP seems to be fairly switched on (most aren't). With prednisione the normal dose is a taper dose, starting at about 80mg a day, then dropping down to nothing over about 7-10 days. It is designed to work as a short term CH preventive until a longer term one can build up to an effective dose. It is very effective as a preventive, but unless the cycle is over at the end of the course and you've not started another preventive, the CH will return.

Maxalt melts (rizatriptan) is normally used for migraine, but it can be used to abort a CH. However it takes about 20 minutes to be absorbed which is a bit long with CH pain. Don't use the sumatriptan injections at the same time as they are both triptans, with the same mode of action, which includes vaso-constriction.

The injections will work a lot quicker than the Maxalt, potentially around 5 minutes, so they are normally preferred over Maxalt.

The feeling high / woozy isn't normal with Maxalt, so I'd certainly discuss this with your neuro. It could be something related to the Maxalt, CH or something else.

So tomorrow you need to:
  • Get a confirmed diagnosis
  • An effective preventive
  • Effective abortives


Do ask about oxygen, which can be very effective. Using a non-rebreather mask and 25lpm I can kill CHs in under 3 minutes, plus you can use it as many times a day as you need. Read up about oxygen at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Also read up about vitamin D3 (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register) which has helped over 80% of people. Using it many, including myself, have gone CH pain free for multiple years.

Hope it all goes well tomorrow and ask any questions you have.
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sabine
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Re: Remission
Reply #7 - Nov 26th, 2017 at 11:11pm
 
Just in time for my appointment - thank you!

What are the other things with the same symptoms we need to rule out before CH diagnosis? And how do we test for them?

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« Last Edit: Nov 27th, 2017 at 12:57am by sabine »  
 
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Mike NZ
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Re: Remission
Reply #8 - Nov 27th, 2017 at 3:54pm
 
sabine wrote on Nov 26th, 2017 at 11:11pm:
Just in time for my appointment - thank you!

What are the other things with the same symptoms we need to rule out before CH diagnosis? And how do we test for them?


How did the appointment go?

There are multiple other things which can give the same, including:
  • Cancers / tumors
  • Other headache types
  • Brain bleeds


An MRI or CT scan is commonly used to rule out some of these, but especially for the other headache types it can include a diagnosis based on history, if indomethacin stops the headaches (for hemicrania continua), blood tests and more.

To get an idea of how many headache types there are and their diagnosis, the International Headache Society has a standard definition of each, along with diagnostic criteria at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

The ones most like CH are, along with CH, in the trigeminal autonomic cephalgias section - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

We've heard multiple times how medical students get a few hours training on headaches whilst at medical school, with the main focus being on migraine and tension headaches. If you have a quick look at the IHS website you'll see how this is barely scratching the surface. Neurologists get a lot more, but a while ago I was in contact with someone who also took a few years to get a CH diagnosis after seeing several neurologists and the person was a neurologist.
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sabine
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Re: Remission
Reply #9 - Nov 28th, 2017 at 12:59pm
 
Hi,

The appointment was ok thanks - he said it's cluster headaches as none of the others fit the full criteria. I've had CT and cone scans a couple of weeks ago so there is definitely nothing underlying. He is the 2nd neurologist to diagnose CH.

He said that unless it's for financial reasons, I shouldn't bother with alternative treatments and just go straight to the sumatriptan injection.

He also wants to do a Sub Occipital Nerve Block. I had never heard of that before, so not sure about it.

He also said there's another option which is very effective but can't say what as it's illegal. I asked if he meant magic mushrooms and he said yes.  Grin

Other options he mentioned to consider if the sub occipital block didn't help were verapamil, lithium and an epilepsy drug.

I asked about:
Vitamin D checks: he said not necessary.
Oxygen: he said I can't take oxygen out with me and it's less effective than sumatriptan injections anyway.
Preventative medications: he said doesn't make sense to use for me based on the nature of my cycles.

I think that about covers it Smiley

Any comments much appreciated!
Thank you  Smiley
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« Last Edit: Nov 28th, 2017 at 1:00pm by sabine »  
 
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Mike NZ
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Re: Remission
Reply #10 - Nov 28th, 2017 at 2:27pm
 
It sounds like he has a reasonably good understanding of CH, but not perfect. Although here on the forums we've the benefit of thousands of people having seen thousands of neurologists and headache experts from around the world.

But he has confirmed the CH and ruled out other stuff, which is exactly what you needed to be able to progress further to getting something effective for you.

Sumatriptan injections are great at killing a CH, but they are not perfect. You are limited to how many you can use per day, normally 2 in a 24 hour period. Plus they can be expensive (especially in the US), but that might not be an issue depending on the number you CH you get and your insurance / public health system.

In contrast, you can use oxygen as many times as you need per day and it can work out a lot cheaper too. I took oxygen out and about, either by having a cylinder in the car or a smaller one in a back pack and it worked fine for me. Plus I could abort quicker using oxygen with the combination of the high flow rate, non-rebreather mask and hyperventilating.

So what often works out best is to have multiple methods available, so you can use what is best for you at the time.

Nerve blocks work by injecting some medication to effectively numb the branch of the trigeminal nerve where you are feeling the CH. For some it can be effective, but it might last anything from hours to days to weeks. Or the CH might just change to the other side of your head.

The other options can work very effective for some, with Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register being where the best source of knowledge in that area can be found. However most of what they do uses drugs which are illegal in most countries, so that might not be an option for you. But read up there so you are fully informed.

Drugs like verapamil, lithium, topomax and others are preventives which cut down how many CHs you get. So it seems a bit confused by him saying they aren't needed due to the nature of your cycles but to use them if the nerve block doesn't work effectively.

What most people will do, is at the start of a cycle to start the prednisione taper to give an immediate preventive and to start using another one which takes a bit longer to take effect. Then once the cycle is over to stop the other one. Verapamil is typical of the preventives, with it taking 7-10 days to take effect at a dose level, which is a typical prednisione taper duration.

He probably dismissed the vitamin D3 stuff as he might not have heard about it. But it is the preventive that I and many others have had the most success with. I've used verapamil, nortriptylene and topomax as preventives, with none of them being anything like 40% effective, never mind 100%. In contrast I'm just a few months off hitting 6 years CH pain free after it stopped my last cycle which was just short of 11 months long.
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jon019
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Re: Remission
Reply #11 - Nov 29th, 2017 at 2:09pm
 
sabine wrote on Nov 28th, 2017 at 12:59pm:
Hi,

The appointment was ok thanks - he said it's cluster headaches as none of the others fit the full criteria. I've had CT and cone scans a couple of weeks ago so there is definitely nothing underlying. He is the 2nd neurologist to diagnose CH.

Ok then...ya got that out of the way...good stuff. many wait for years to get one tentative diagnosis....


He said that unless it's for financial reasons, I shouldn't bother with alternative treatments and just go straight to the sumatriptan injection.

Well...that's using a hammer...which works but is damned expensive and in my experience feels "ooky"...



He also wants to do a Sub Occipital Nerve Block. I had never heard of that before, so not sure about it.

Worth a try....didna work for me...does for some.............


He also said there's another option which is very effective but can't say what as it's illegal. I asked if he meant magic mushrooms and he said yes.  Grin

THAT is delightfully enlightened!



Other options he mentioned to consider if the sub occipital block didn't help were verapamil, lithium and an epilepsy drug.

Of the 3...verapamil has the best reported (here) success...for me about 70%......



I asked about:
Vitamin D checks: he said not necessary.

Ridiculously cheap and free of side effects...which, if any are, BENEFICIAL. This is oddly obtuse opinion....



Oxygen: he said I can't take oxygen out with me and it's less effective than sumatriptan injections anyway.

Carried an e-tank to work in a rolling cart for 30 yrs....after a while no one noticed and 5 mins alone to kill a hit were WAY better than 2 hrs of "where's Jon"....get thee same...you'll be glad ya did!



Preventative medications: he said doesn't make sense to use for me based on the nature of my cycles.

And WHY???


I think that about covers it Smiley

Any comments much appreciated!
Thank you  Smiley

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sabine
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Re: Remission
Reply #12 - Nov 29th, 2017 at 3:02pm
 
jon019 wrote on Nov 29th, 2017 at 2:09pm:
sabine wrote on Nov 28th, 2017 at 12:59pm:
Hi,

The appointment was ok thanks - he said it's cluster headaches as none of the others fit the full criteria. I've had CT and cone scans a couple of weeks ago so there is definitely nothing underlying. He is the 2nd neurologist to diagnose CH.

Ok then...ya got that out of the way...good stuff. many wait for years to get one tentative diagnosis....


Grin


He said that unless it's for financial reasons, I shouldn't bother with alternative treatments and just go straight to the sumatriptan injection.

Well...that's using a hammer...which works but is damned expensive and in my experience feels "ooky"...


I have to know what "ooky" means please!



He also wants to do a Sub Occipital Nerve Block. I had never heard of that before, so not sure about it.

Worth a try....didna work for me...does for some.............


It sounded very scary to me. Are there many side effects?

He also said there's another option which is very effective but can't say what as it's illegal. I asked if he meant magic mushrooms and he said yes.  Grin

THAT is delightfully enlightened!


More shocking was my very straight laced, anti drugs, almost 70 year old mother was with us and after discussing MM, she pipes up - "what about cannabis - can she take that?"  Grin Grin.


Other options he mentioned to consider if the sub occipital block didn't help were verapamil, lithium and an epilepsy drug.

Of the 3...verapamil has the best reported (here) success...for me about 70%......



I asked about:
Vitamin D checks: he said not necessary.

Ridiculously cheap and free of side effects...which, if any are, BENEFICIAL. This is oddly obtuse opinion....


He was very dismissive of this question. I am going to do it myself either way. I already take magnesium and D3 5000 supplements every day (for about 1.5 years now - just 'because') but I need to check the levels with a blood test and increase the dosage, I'm sure?


Oxygen: he said I can't take oxygen out with me and it's less effective than sumatriptan injections anyway.

Carried an e-tank to work in a rolling cart for 30 yrs....after a while no one noticed and 5 mins alone to kill a hit were WAY better than 2 hrs of "where's Jon"....get thee same...you'll be glad ya did!


The GP said something about oxygen not being an option here is SA. Can't remember her exact reasons but think medical aid won't cover it and need special permission for home use. Not entirely sure...



Preventative medications: he said doesn't make sense to use for me based on the nature of my cycles.

And WHY???


Based on my 4 year remission. He said if I was having more consistent cycles it would be worthwhile.


I think that about covers it Smiley

Any comments much appreciated!
Thank you  Smiley



Thanks for the responses. Feels SO good to talk about this stuff with people who know. Most people look at me like an alien and like I'm being dramatic about my little 'headaches' - after all they've had terrible migraines so they know what its like Smiley
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Mike NZ
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Re: Remission
Reply #13 - Nov 29th, 2017 at 4:56pm
 
Great to see you CH knowledge advancing leaps and bounds over just a few days. This is making you be in charge of your CH and not CH controlling you.

I love the response from your mother. It is always amazing to get insights into our parents like that.

And don't be surprised by how most people just don't have a clue what a CH is like and dismiss it as "just a headache" or similar. I know that before I encountered a CH I'd have probably had a similar reaction (guessing most people here are likely to have too).

Have a search online and see what you can find as the worst pain known to mankind and invariably CH will be there and either at the top or close to it.
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Re: Remission
Reply #14 - Nov 29th, 2017 at 5:37pm
 
Ooops...sorry....."Ooky" is a family term...my Mom was big on made up words...kind of a secret code thoroughly enjoyable for a kid! "Do you just feel bad or REALLY ooky?"

In this case Oooky= light headed, tingly, racing heart, dizzy, odd, non-normal.....
Not to say all triptans are the same....I have used, quite successfully, 5 mg Zomig Nasal Spray...
my abort of last resort...with NO side effects.........and 99% success

Re nerve block....the ONLY side effect was a temporary slight numbness at the injection site....alas, didna work for ch relief for me....but I'd give it a try twere I yu...nothing scary.....

Please give your Mom a hug from us clusterheads...we love us some supporters....funny ones even betta....

Get the O2!!!!...even if it's from a welding tank....you WILL cry tears of joy the first time it melts (I mean THAT literally) the beast...and many times after. It will make you believe in miracles......

Wise to do blood checks with the D3 regimen...or even without...

Best

Jon
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« Last Edit: Nov 29th, 2017 at 5:38pm by jon019 »  

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Re: Remission
Reply #15 - Dec 1st, 2017 at 2:09am
 
Thanks Mike and Jon,

My mom has seen me lying face down on the bathroom floor banging my head on the tiles like a loony too many times, or beating my head with my fist - so even she's willing to try anything.  Grin

Will look more into the oxygen - sounds great.

Thanks for all the feedback and support.
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Re: Remission
Reply #16 - Dec 1st, 2017 at 2:21am
 
sabine wrote on Dec 1st, 2017 at 2:09am:
My mom has seen me lying face down on the bathroom floor banging my head on the tiles like a loony too many times


Loonies do that too? I thought it was only people like us who did stuff like that.
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Re: Remission
Reply #17 - Dec 12th, 2017 at 9:06am
 
Hi Sabine,
I'm reading this thread with interest, but am quite late to the party.  For what it's worth, I was in remission for 7-10 years until this summer, possibly longer.  It's a bit hard to say because I was using Verapamil between 2004 and 2009 (I tapered off very slowly).  I had a bout of shadows in 2010 but was entirely pain free from then until June this year.  What's more, my last full CH attack was in 2004, and given that my CH started in 1992, that means that I've gone longer without an attack than whole period of my life during which I DID have them.  Ok - that's perhaps a somewhat pointless statistic but I cling on to little things like that!

Like you, my CH used to be in predictable cycles - 2-3 weeks each spring for the first few years.  My remissions lengthened but I began to have bouts of shadows as well and these became the norm at one point.

I also had septoplasty.  Mine was in 2004 so I did begin to wonder whether it had fixed me.

I'm currently working with a neuro to see whether my CH might have morphed into another condition.  I'll read the thread again and will add to it if I have anything useful to say.

Good luck with your treatment.

Joe
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Mike NZ
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Re: Remission
Reply #18 - Dec 13th, 2017 at 11:01pm
 
This reminds me of Chumbawamba's one hit wonder "Tubthumping" with the chorus being:
Quote:
I get knocked down,
But I get up again
You are never gonna keep me down
I get knocked down,
But I get up again
You are never gonna keep me down
I get knocked down,
But I get up again
You are never gonna keep me down


CH and life in general can be tough. CH just brings it all to a tight focus. But from what I've seen here over the years, people with CH have tremendous character in being able to keep battling on.

DJ's signature here on the forum says it even better:
Quote:
Adversity does not build character... it reveals it.


Keep getting up again LasVegas.
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