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BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 4064
   Posted 4/16/2012 7:47 PM (GMT -6)   
Is there anyone out there that endures either of these conditions? I have had CH since High School due to head trauma from abuse. The TN was diag in 2006.  Pain is under control with
meds.  However, i have noticed that since repressed memories have come back the clusters are worse. Definately related.  Looking to see if anyone has/had same experience or similiar.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11387
   Posted 4/16/2012 8:52 PM (GMT -6)   
Hi BnotAfraid and welcome to the chronic pain forum. I am sorry that you have to be here but very glad that you found us. Sometimes just having people to visit with that have pain too can help us not feel so isolated.

I do not have either of your conditions but know a little about both and know how painful they can be. We recently had a person post here about TN but I don't believe we have heard from them in a couple of days. Sometimes people will join the forum and make one post and we never hear from them again. I am so glad that your pain seems to be under good control, that is over half of the battle.

Just so you know we also have a Migraine-Headache forum too and you may want to check them out about the cluster headaches. Many of us visit more than one forum here for various health conditions.

Anyway, I wanted to pop on and tell you hello and welcome aboard. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 4064
   Posted 4/16/2012 9:17 PM (GMT -6)   
Thank you very much for the warm welcome!
 

Tasaulkah
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/22/2012 8:49 PM (GMT -6)   
Hi, I'm new to the forums and, like you I suffer through life with Trigeminal Neuralgia. My TN is very Atypical where I woke up one day in May, 2009 with the sensation of what I imagine being shot in the face feels like and it has never gone away since. I've been through the gauntlet of good, mediocre and horrible doctors, inept medical practices and my own craziness at the frustration of the entirety of those in charge of the "Well Being" (for lack of a better term) of patients. Feel free to reply or shoot me a message to further discuss as This is my first post here and I'm just learning the ropes of what is the norm for this site. Additionally, I've quite interested to hear what has and has not worked for you.
Atypical Trigeminal Neuralsia, Gait/Movement Disorder, Optic Neuritis, Many Other UnDx'd Neurological Conditions...

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24258
   Posted 7/22/2012 10:10 PM (GMT -6)   
bnot,

not familiar with that particular ailment, but i feel bad for you. hopefully others with it can give you some direct answers. hope it gets better for you at some point, that's a lot to deal with.

david in sc
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incont & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA still rising
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
Member of Prostate Cancer & Chronic Pain HW Communities Since 10/2008
“I live in the weak and the wounded” – Session 9

donft
Regular Member


Date Joined Apr 2013
Total Posts : 96
   Posted 6/9/2013 12:07 AM (GMT -6)   
Hi. I'm visiting from the prostate cancer forum. I have had cluster headaches since 1985, ranging from chronic to episodic. I've been fortunate to be in remission for 3+ years. They say that some studies show again decreases intensity and frequency. Have a trigeminal neuropathy (as labeled by my neuro) or trigeminal neuralgia (oral/facial pain specialist). I've got the voodoo working on two of the three branches of the trigeminal nerve. And now prostate cancer. Oh, well.

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4814
   Posted 6/9/2013 3:56 AM (GMT -6)   
Hello don't and welcome to the forum. I've had some closely related experience as I had encephalitis in 86,in a coma for 3 days and awoke with a huge amount of hearing loss,big gaps in memory and the worst headaches imaginable.

For years after I battled headaches almost daily and as my memory or pieces of it returned the headaches became more intense. I saw so many Drs from Neuros to holistic and though they all tried nothing seemed to lessen the intensity or frequency of my headaches.

The only break I found was during pregnancy? I seem to have less headaches and a drop in severity during my 2nd and 3rd trimesters. Really made no sense to me but I certainly couldn't stay pregnant forever.

Finally had a change in insurance and had to see a new pcp. This fellow was a child to me,didn't look old enough to have had 12 yrs to spend in college. He referred me to a specialist at the University hospital who worked with patients who suffered TBI-traumatic brain injury. He told me ' the virus from the encephalitis actually attacks the brain causing damage in traumatic degrees therefore this was my best bet for treatment.

It took months to actually see the lady but the difference it made was astonishing. She did various tests and labs and some that made no sense but in the end she cut my migraines or whatever kind of headaches in half.

She said that when parts of the brain was injured that's loss of whatever functions those parts no matter how small were responsible for. She explained the increase in pain from memories resurfacing as very hard work for the existing parts of the brain and stressful for the CNS.

Once she could determine by testing and history what parts of my brain actually suffered we began maintenance therapy for what we could. I had a hormone insufficiency due to damage to or loss of cells or areas that not produced hormones but played a role in regulating hormone balance, thus explaining the pregnancy issues.

I was started on HRT. Also was having issues with K+ distribution and each of these were dealt with by meds and dietary supplement and I was like a new person.

The new age nerve meds such as lyrica were not heard of but now they use those as well. Elavil was however useful as well as a low dose Valium and Inderal. Once we got it all worked out I felt so much better.

I never regained all my memory or any of my hearing but the TBI treatment worked and I'm forever grateful.

Im hoping that my story can point you in a different direction and possibly find help as I did. Even though the treatment and theory back then was riddled with skepticism from much of the medical field its great that some of the young new Drs were willing to try cutting edge theories and today those theories are based on facts.

Sorry for the length but it was a long and frustrating road so I wanted you to understand the key points.

Good luck to you and never give up the search for answers.
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator chronic pain

Disabled since 1998 on SSD
DX: lft knee TKR. 6 rt knee surgeries for meniscus repair. Pars defect,ddd at L3-4 S1. disc collapse at L-3 with nerve impinge,legally deaf, shoulder repair,post encephalitis/mig
Meds(Methadone, lyrica, K+,Indocin,Zantac,Zanaflex,Inderal,HRT

Post Edited (nvrthesame98) : 6/10/2013 4:32:19 PM (GMT-6)


holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 6/9/2013 8:12 AM (GMT -6)   
Hi,

I have been told I meet many of the criteria for a condition called SUNCT, which is in the same family of disorders as CH. They are called TACs I think?

As I understand it, CH involves long lasting episodes of pain, where as what I have is short, sharp pains which come in cycles i.e. 10-20 short stabbing pains in the space of a few minutes. I thought I had TN at first but am told it is not that.

Really rough thing to deal with, what medications are you taking?

donft
Regular Member


Date Joined Apr 2013
Total Posts : 96
   Posted 6/9/2013 9:54 AM (GMT -6)   
Not true about the characteristics of CH. As I have had thousands and done a great deal of research, I can state the following are characteristic.
1. Pain is of much shorter duration than migraine. about 20min-1hr
2. Pain is specific to the region around one eye (sphenopalatine ganglion)
3. These are usually, but not always unilateral. Mine was always on the right side
4. Pain is usually described as the sensation of an ice pick stabbing the eye
5. There is always lachrimation (tearing) and reddening of that eye
6. Lots and lots of mucus during the attack
First, go to clusterheadaches.com for more information
Here are some things I found useful
• short course of Prednisone concurrent with Botox treatment to the forehead area. This is done by a neurologist, not a plastic surgeon
• oxygen at a fairly high flow and a non-rebreather mask. Have forgotten the flow, but you can look it up. This only helps CHs around a 4 or less on the KIP scale
• Imitrex injections. Always work. I think I took 6mg, but you can look it up. The pills and the inhaler were useless for me. The beauty of the injections is that they take effect in less than 10 minutes. With any other drug or method, the CH is almost done by the time the drug crosses the blood/brain barrier.
Family History of PC:
Father ~age 65
Brother age 55 DaVinci 2011 G9
Self age 62 Dx @62
PSA 2010 2.3, 2011 2.7, 2012 5.3
Biopsy 1/17/2013 10 cores taken 3 tumors found, G3+3
DaVinci surgery 3/5/2013 total prostatectomy
Prostate weight 53 grams
Pathology report: G3+4 tumor right & left lobes. Largest focus 1.3 CM
Margins negative, perineural invasion absent
Continence: horrible (10 pads/day)

holydiver
Regular Member


Date Joined Jul 2012
Total Posts : 82
   Posted 6/9/2013 11:48 AM (GMT -6)   
That's not as long as I thought they were. Still sounds a lot like what I have, except mine are a few seconds to a few minutes long. CH definitely sounds worse in that the pain is constant for that long rather than going up and down.

Glad it is under control anyway, sounds like a truly awful kind of pain to have.

donft
Regular Member


Date Joined Apr 2013
Total Posts : 96
   Posted 6/9/2013 11:58 AM (GMT -6)   
It's not for nothing that it's called the "suicide headache." I won't own a gun for that reason. The amount of pain has been described as the third worst a person can experience while still remaining conscious. I believe it.
I really wish you the best of luck. I don't know how old you are, but perhaps you have something like my 3 1/2 year remission in your future. And look into the Imitrex and the Botox.
Family History of PC:
Father ~age 65
Brother age 55 DaVinci 2011 G9
Self age 62 Dx @62
PSA 2010 2.3, 2011 2.7, 2012 5.3
Biopsy 1/17/2013 10 cores taken 3 tumors found, G3+3
DaVinci surgery 3/5/2013 total prostatectomy
Prostate weight 53 grams
Pathology report: G3+4 tumor right & left lobes. Largest focus 1.3 CM
Margins negative, perineural invasion absent
Continence: horrible (10 pads/day)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11387
   Posted 6/10/2013 12:54 PM (GMT -6)   
Hello Donft & welcome to the chronic pain forum. It seems you have posted on an older thread that has not had a lot of activity in a while. You posted some very good info above & I am going to ask you to re-post that info on a new thread. That way it will get better coverage and more people will see it.

Thanks.......Susie
Moderator, Chronic Pain Forum & Psoriasis Forum
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