Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Unusual symptoms of CH. (Read 1033 times)
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3681
Cairns, Qld, Australia
Gender: male
Unusual symptoms of CH.
Nov 17th, 2018 at 7:16am
 
We all know the common signs and symptoms of this dread disease but it's a while since I've seen comment on some of the more weird and wonderful things that we must live with.

First and foremost must be the little red line that some ClusterHeads get across the bridge of the nose, even out of season, but a reminder that the beast is never far away. Haven't had one for a while now but they terrified me because then I knew what was coming.

Our Cluster Bump has long had me intrigued and for years I believed it to be the cause of the problem, along with a severely enlarged pupil in one eye which only made matters worse. Again, these are just alarming symptoms that remain mostly unexplained.

How can a nose be blocked and running like a waterfall at the same time?

When I got my first true diagnosis the madman suggested my nasal contents may have switched from soft and slimy to looking more like my breakfast cereal. I had to admit he was right.

I've also seen rare references to the pulsing veins near the ear in the aftermath of a big one and to me it feels like a worm crawling along beneath the skin.

Little wonder this is such a difficult condition to diagnose and treat as it's so hard to separate cause from effect.

Certainly there are other little warning signs and unexplainable consequences so I'm interested to hear of other people's odd little experiences. If nothing else it might serve to let other sufferers know they're not actually mad because these things are really happening to them.
Back to top
« Last Edit: Nov 17th, 2018 at 12:47pm by AussieBrian »  

My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
IP Logged
 
cryptonomad
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: Unusual symptoms of CH.
Reply #1 - Nov 17th, 2018 at 3:39pm
 
I'm chronic since diagnosed in 2015....was probably episodic for a few years before that (always had headaches due to high stress job). I have all the usual tell-tale symptoms always left. I was pretty much in denial for the last couple years and sure it had to be secondary "cluster like" HA to another primary cause. Burned through a couple neuros and PCP's all diagnosing primary chronic cluster through MRIs and process of elimination. I know now after reading a lot of testimonials from others how lucky i was to be pretty quickly diagnosed. i was in denial due to the seeming weird additional symptoms and the conditions unwillingness to adhere to any schedule, frequency, or intensity.

Until last week, when i found this site, i was averaging 6 KP6-10 daily, with no periods completely PF. Always had a shadow in between, and through the nights. Nearly all the big hits were during the day/evening My life and work schedule revolved around dosing suma 100mg tabs, which effectively allowed me to push the big hits around my work schedule mon-thurs..and fri-sun spent detoxing the suma in a feeble attempt to sustain half-life without over-dosing daily. Was on verap for nearly two years, with no relief before my old neuro finally agreed to throw in the towel after i fat blank told him i wasn't taking int anymore. tried topa a few times, with no benefit and huge impact to consciousness, motor, and metal sharpness, which i need to do my job.

Anyway to respond to this post, i always have pressure in my sinus area and never feel just good. My hits always start with a slight burning sensation on my left upper lip, then moves up to the left bridge in nose and parks there as it starts quickly ramping. the focal point of the main hit always stays there, but seems more radiated to behind my eye, socket and brow. I know i'm on the down stroke when the pain starts to radiate beyond my eye to my temple, my sinus starts popping, and it continues to radiate down the trigeminal to my ear and finally a sharp pain in ear like a pick was just shoved in there for about 5 seconds. after that the main pain starts to flow away everywhere at the same time taking @ 15-60 mins to get back to pre-hit feeling or follow on hit.

I am blown away by the amount of positive information on this site, and don't know why it took so long to find it. It has helped me a lot, not just with the hits, but mentally accepting that i need to learn/can live with this CCHA condition, and its probably not going to stop after just one more suma drop!!!. That i need to take control of managing my treatment, and there are options beyond what sanctioned treatments prescribe.

I did start Emgality a few weeks ago. Even though it basically had zero effectiveness in CCH trial, my neuro and i agreed what could it hurt, and they have a program that seriously offsets the cost to nearly zero as it gets off the ground. It could take up to 3 months to see any effectiveness (same ole caveat). Was two weeks in to the loading dose with seemingly more hits when i found this site and Batches D3. that was last sunday. I had all the mix because i tried it before i think off of ouch or CB but it had no effect. I have had the best week i have had in nearly two years, since my first and only pred taper that worked until it got to the taper part...lol. The missing co-factor leading to failure the last time i tried D3? Antihistamine!...Thanks Batch. i had my first PF day the very next day! it didn't last PF, but it has so far allowed me to experience KP1-3 mostly and only one day of a few 6s and only one 10 all week. So...Thankyou very much. i now have some optimism and feel i can inch back control of my life!
Back to top
« Last Edit: Nov 17th, 2018 at 4:01pm by cryptonomad »  
 
IP Logged
 
jon019
CH.com Alumnus
***
Offline


"Ya gotta believe!"


Posts: 1636
USA
Gender: male
Re: Unusual symptoms of CH.
Reply #2 - Nov 17th, 2018 at 5:38pm
 
Hiya crypto...glad ya found the family...gotta ask: No oxygen... energy drinks!?

Best

Jon
Back to top
« Last Edit: Nov 17th, 2018 at 5:38pm by jon019 »  

The LARGE print giveth....and the small print taketh away.    Tom Waits
 
IP Logged
 
maz
CH.com Hall of Famer
*****
Offline


I Love CH.com!


Posts: 1071
Hampshire, England
Gender: female
Re: Unusual symptoms of CH.
Reply #3 - Nov 17th, 2018 at 5:49pm
 
Hi Brian
As you may remember, I don't get any warning.  I have loads of shadows - almost every day, which rarely amount to anything, but I know the beast is there.  When I do get a big hit, it's 0 - 60 in 10 seconds. But no aftermath - 5 minutes after it ends it's like it never hapened.
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Unusual symptoms of CH.
Reply #4 - Nov 17th, 2018 at 7:02pm
 
Maz's CHs sound like mine. I could go from nothing to a full blown CH in 5-10 seconds at the most. They would do their thing (before I got oxygen and sumatriptan) and then fade away over a minute or so and be gone, apart from bad ones leaving me feeling battered and worn.

I've never noticed any of the symptoms that Brian notices. No wonder it can be confusing for doctors to diagnose when to do it properly means you have to rule out ALL other possible causes.
Back to top
  
 
IP Logged
 
cryptonomad
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: Unusual symptoms of CH.
Reply #5 - Nov 19th, 2018 at 4:59pm
 
jon019 wrote on Nov 17th, 2018 at 5:38pm:
Hiya crypto...glad ya found the family...gotta ask: No oxygen... energy drinks!?

Best

Jon


tried O2 more than a few times in PCP and neuro offices. never helped...but after reading here, wasn't administered ideally for cluster aborts. Putting together a rig to give it another try. never drank energy drinks, or thought about it for aborts until reading it here..going to give it a try.
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Unusual symptoms of CH.
Reply #6 - Nov 20th, 2018 at 10:19pm
 
Give each a go, tell us how you got on with what works and what didn't.

We'll try to suggest options to improve things.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!