Hemicrania Continua

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

plato
New Member


Date Joined Sep 2010
Total Posts : 11
   Posted 9/2/2010 6:30 AM (GMT -6)   
I have recently been diagnosed with Hemicrania Continua.This evolved from a previous diagnoses of chronic paroximal Hemicrania a relative of,even though the 2 are very similar Hemicrania Continua like its name continues and does not necessarily respond to indomatachin,which i found out after a very aggressive tooth operation and subsequntly had and am now having vicious attacks.Even before the diagnoses of the two conditions thre was an experimental period both by GP'S and then by Neurologist to ascertain the particular type of Migraine took about 7 months.During that time,the headache was non responsive to the varios tablets and i had to take alot of time off work,suffered pain from hell,pyschotic mood swings,anxiety attacks,melacholic fits,which disrupted my homelife,social life kids family etc.The diagnoses eventually came when the Neurolgist suggested i take the indomatachin if it responded quickly then it was cph.I had instant relief,i did not have a single headache for 3 months it was life restoring,i thought that was it,this is what i had the Nueurologist was delighted,even though CPH, is incurable and for life at least the indomatchin can relive symptoms rather like taking a phensic for a headache if and when needed.Alas had tooth OP and had attacks from hell last 8 months,diagnoses as in july by a consultant recommended by my neurologist who is specialised in this field and was brilliant.he explained the science behind the condition and let me speak about what i had gone through.I have now to undergo alot of treatment over the next year.
Hemicrania Continua is rare my Neurologist was not equipped to deal with it,Gp's will certainly not know,but Consultant are.MY neurologist arranged for me on the NHS to see the consultant,there are long waiting lists.I did borrow the money to go private for one visit to see him,before my NHS APPOINTMENT,it cost 250.00,it was worth every penny,because he made proper diagnoses and arranged proper treatment for me knowing the gravity of my ailment.

plato
New Member


Date Joined Sep 2010
Total Posts : 11
   Posted 9/2/2010 7:23 AM (GMT -6)   
To follow on in the subject of Hemicrania Continua and Chronic Paroximal Hemicrania,should anyone out there be expericiing severe pain down one side of head on a daily basis go to GP immediatly! Make a nuisance of yourself,there are varying forms of migrains connected to one sided head pains ie daily chroninc headaches,they need attention,persist with GP'S,THEY WILL NOT GO AWAY!!Also,GP'Shave a criteria about what meets a migraine as opposed to a headache,if you keep suffering they wiil eventually treat you with migraine tablets,if they do not work,they will refer you to a Neurologist.Keep a headache Diary!If you are sufferig from mood swings,anxiety,on extreme levels,this is the migraine,it comes from the pain,it will /can devastate your life,social,family/work!Communicate,articulate to those around you,what you are suffeering,constantly,it is a jekyll and hyde exsistence!If you are diagnosed with HC/CPC or any of the cluster family these are the worst migraines,they are incurable and the pain experienced are the worst recorded in medical fields even worse than giving birth,so you havent just got just a headache,but they are treatable,so be positive,threre will be lulls in the hell periods possibly for long periods of your life.Employers are aware of migraines i have had to take months off,this one is rare and ongoing.Again i communicated constantly,sent medical certifictes,nerologists reports,appointments etc.Do not do what i did and return back to work to work and do a full 9 hour shift after being off for 3 months i had a 9 out of 10 full on atack that night and 3 weeks of hell,my GP reprimanded me and has written me ff for another 2 months as the attacks are still aggressive.He will arrange a back to work programme for chronic patient programme starting with a week of 3 hours a day working up to 8 hours over 4 weeks,ask your GP,for a similar programme if they do not offer,everything is trial and error.You do not have to leave your job,as long as you send sick certificates,you can be long sick,it is goog to send neurologists reports,appointment records etc as long as you are covered you are fine.Company will put you SSP,it is better than nothing,also a irst aider will have to informed in case you have an attack and know your medication.Also adopt a GP,whom emphathises with you,they can be mediators between you and the neurologist should your condition worsen.Also,do not be scared to ring Neurologist yourself of your GP,is on holiday,you will be put through to a private secretary,they are approachble and may be able to advise/or in extreme cases speed up things for you,

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 9/5/2010 12:00 PM (GMT -6)   
Hi Plato,

Welcome to Healingwell. I too have Hemicrania Continua. Sounds like you maybe in the UK?? If so which Neuro diagnosed you? I am under the National Hospital for Neurology and Neurosurgery in London. How long have you had this? - I have had it almost 22 years. Does yours remain on one side only?? - mine can swap sides!!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

plato
New Member


Date Joined Sep 2010
Total Posts : 11
   Posted 9/5/2010 3:12 PM (GMT -6)   
Dear Annuk,

I have only been diagnosed since July this year, but I have suffered for two years with it.
Yes, I am in the U.K.Luckily I am now under the care of Dr.Mathura who is based at Londons Great Ormond Street hospital.He is a leading expert in this field and I believe he has gone to America before to lecture about this condition.
It does only remain on the left hand side of my head at the moment!I am being treated with indometacin, which I find to be mostly effective, and topiramate which I hate for the bad side effects and the fact that it does not help me at all.I have had one nerve injection which I am not sure helped, and am having another one soon.
What treatment do you have at the moment? What have you found to be most effective?
Thank you so much for replying, you are the first person I have spoken to with this condition,
All the best,
Plato

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 9/6/2010 2:04 AM (GMT -6)   
Hi Plato,

Do you mean Dr M. Matharu at the National Hospital for Neurology and Neurosurgery, as I know he is consulted for his expertise by the guys at Great Ormond Street, but he does not practice there. If it is Dr Matharu that you mean he is my consultant too!!

Sadly I can no longer tolerate Indomethacin as I have had a stomach bleed. Topiramate made me bonkers and very depressed. I have tried just about everything on the market now for headache and am currently on the waiting list for ONSI (Occipital Nerve Stimulator Implant). Meanwhile I am having GONB's and have just finished a course of DHE at the National Hospital.

Professor Goadsby first diagnosed HC for me in 2007 at which point I had been suffering for 17 years being told by Docs it was only migraine and I was to learn to live with it!!!!!!

Whereabouts roughly are you in the UK? I am in Essex.

Take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

plato
New Member


Date Joined Sep 2010
Total Posts : 11
   Posted 9/6/2010 2:54 AM (GMT -6)   
Hi Ann,

Yes, that is the same Dr Matharu! I am going to see him soon again for a new course of treatment.

Sorry to hear that you can no longer tolerate indomethacin as it is my lifeline at the moment.That must have been a nightmare for you being told to learn and live with such a disabling condition for so long without proper care and treatment.

I am currently living in Brighton, it is lucky for us both that we are living within a close vicinity of Dr M. !

I am going for a nerve injection into the great occipital nerve tomorrow again, hopefully it will bring me a bit of relief as H.C. is quite aggressive at the moment.I have been off from work for three months.Thinking of doing some art work to try and express visually this daily nightmare condition.

Love Plato
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 16, 2017 10:03 PM (GMT -6)
There are a total of 2,856,371 posts in 313,393 threads.
View Active Threads


Who's Online
This forum has 155050 registered members. Please welcome our newest member, CDanny20.
388 Guest(s), 5 Registered Member(s) are currently online.  Details
CDanny20, KidneyAngel, Scaredy Cat, Girlie, KittyJ


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer