(Constant Severe Headache!!) PLEASE HELP!! URGENT!! 21 Year Old Male Teenager in London

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Richard VI
Regular Member


Date Joined Feb 2006
Total Posts : 44
   Posted 6/17/2008 4:45 PM (GMT -7)   
PLEASE PLEASE PLEASE Somebody help Me!!...

Richard VI
Regular Member


Date Joined Feb 2006
Total Posts : 44
   Posted 6/17/2008 4:46 PM (GMT -7)   
Dear All,

I write this message, after almost 5 years of pure agony, suffering severely from the onset of Chronic Headaches/Migraines since the age of 16-17 years old! Sadly so far very little has been found or helped me and from reading all the messages here, i actually think i take Headache torture to another level.

I am now 21y old, everyday my life is taken from me, i enjoy nothing, i am a big guy, 6'4 and i used to be healthy, out-going and extremely active! for the entire duration of my pain i have been ridden with agony, severe depression and constant state of mind which leaves me in unexplainable levels of madness...

I live sadly in London, not the US, where i have considered being flown out to many times over the last few years. My mother has sadly been the one who has really felt the price of this nightmare, we have spent thousands of pounds, seeing specialists, seeking help, treatments medical and natural all over the world and web.

To summarise my story, i was 16-17 years old, i fell ill with no history of any form of headaches, to severe crippling migraines, my life was changed. i developed chronic daily headache, all kinds of diagnoses ranging from TMJ pain, A-typical facial pain, New Persistend Daily headache, Low CSF Headache, etc etc

i am currently under Prof P.J Goadsby in the UK, who is known as one of the best neurologists in the entire world. he currently has had me on Nuelin SR 700mg p/day for treatment of suspected but not proven Low CSF Headache... I am in agony 24 hours a day, and i am constantly close to suicidal thoughts as i find myself further and further away from any ANSWER OR CURE!!!!!????

my story is EXTREMELY similar in character and treatment to the girl on this Forum. It is scarily similar, and i really hope or would LOVE anyone's advice or help for me....?

to make things clearer i am about to post an entire overview of my headache treatment and process as it has changed and begun so please if anyone reads it and feels any thoughts please, in the name of GOD contact me here in London in the UK. i am sincerely desperate. all i want is a chance at Life...
My family is falling apart and my mum herself can't cope with it anymore.




I have removed your contact details for your safety - Ann


Best Wishes,

Richard Carr

Post Edited By Moderator (Annuk) : 6/18/2008 3:43:29 PM (GMT-6)


Richard VI
Regular Member


Date Joined Feb 2006
Total Posts : 44
   Posted 6/17/2008 4:50 PM (GMT -7)   
I know what i just posted is long. But i have had NO Life for almost 4-5 years now, and i must keep OPTIMISTIC, something somewhere will come up and resolve this nightmare for me, GOD did not intend any human to suffer in this way...

Best Wishes

Richard Carr

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 6/18/2008 2:45 PM (GMT -7)   
Richard,

I have deleted your long post as it is a repeat of another post on this forum - I would refer you to the forum rules regarding duplicate posts!!

Ann
Co-Moderator of the Migraine/Headache Forum


Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/3/2008 6:54 AM (GMT -7)   

Hello Richard,

sad  I just joined here after reading your post. I can understand your suffering.

  skull  I have had constant headaches for almost 8 years. They have been getting worse over time and now they are unbearable. I haven't been to school or anywhere all year. In 9 months all that has happened is I have had an MRI and an ultrasound of my head and seen two neurologists. No one has told me why I have the headaches because they found nothing in the tests. They say I'm just tired.

confused  Have you had any tests? Have you been sent to Great Ormond Sreet Hospital or Guys' and St Thomas' in London? It doesn't sound like the doctors care about you at all. You have a right to get a second opinion. Have you seen phsycologists? Do painkillers help at all? They don't help me but I take them anyway. I don't know why.

I know its hard but what keeps me going is the hope that someone will find out why I have headaches and cure them so I can get my life back.

smurf  Do you have any brothers or sisters? I only have my mum. My dad doesn't care much about me, my grandparents are all dead and my relatives live far away so its just me and my mum. I should be grateful my dad lets me live in his house and buys me food and clothes.

What do you do every day? Do your headaches let you do anything? Mine get worse with everything I do so I just stay in bed or go and watch TV. I also play Runescape and my piano. On a good day I go outside for a walk.

Do you have other symptoms with the headaches? Maybe dizziness, nausea or even vomitting?

I can recommend things to lift your spirit. I know chocolate and coffee help but they have side effects (I used to eat chocolate then I decided to eat healthier and gave it up. Soon afterwards I felt sadder like I need the chocolate to feel happy so, I don't recommend it). I watch House M.D (on Five at 12.45pm and on Hallmark at 8pm), that usually helps.

I also have depressive moments but I know someone else has it worse so I think about how I need to get better. Then I can become a doctor and help people.

:-)  Katiusha


Stayce92
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 7/5/2008 4:03 PM (GMT -7)   
Have any of you guys with constant daily headaches been diagnosed with hemicrania continua? I recently went to a NEW neurologist that is a specialist only dealing with headaches, he gave me this diagnoses in 15 minutes. I have been suffering for four years now. He says what I have is very rare and most other neurologist don't even know about this - if you look this up it is exactly what I have. Daily pain, on one side of my face only, covering my entire face, not just my head, and only treated with Indomethacin. This explains my facial pain which my other doctor always wrote off which pissed my off because my facial pain was a big deal to me. Also, this is why other medicine doesn’t work on us and we remain in pain, no matter how much of the other stuff we take, only Indomethacin works on hemicrania continua. Please read up on this guys, print the information out and take it to your doctor. This could be it for people like us.

Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/6/2008 4:21 AM (GMT -7)   

 

Hi Stayce92,

:-)  Thank you for your offer to help. My headaches are not in my face, they are all over like I'm wearing a tight helmet. Do you have any advice?

confused  What are your headaches called? I think I have a tension headache that started almost 8 years ago. Does it count as a tension headache if it never stops? Sometimes its more painful and other times its not so bad but it never goes away.

      sad

Katiusha


Stayce92
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 7/6/2008 10:30 AM (GMT -7)   

Sorry, that is not what I have, I have Hemicrania Continua (one sided continuous headaches)  My pain is daily, but localized to one side of my head, covering the area around my eye, varying from slight to moderate, affecting me every single day.  It is not a feeling of "tension", which I believe from reading on the internet what you feel is more of a vice-like grip around your head, maybe?  I had no idea until recently that there were neurologists that specialize just in headaches.  I stuck with my original one for four years and he did me no good at all, just giving me more and more meds that had no affect on me.  One visit to a headache specialist and I am doing much better.  Try googling this area of specialize in your area.  I had to fill out about 10 pages of paperwork about my headaches before my first appointment.  It was worth it for me. 


Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/7/2008 12:08 PM (GMT -7)   

redface  

Stace92,

:-)  Thank you for your advice. I didn't know there were doctors who specialise in headaches. I don't know why none of my doctors told me about this. They keep saying ignor the headaches. Its a bit hard when it hurts to think, let alone live a normal life.

confused  Why did no one refer you to this specialist before? Has your new doctor helped you? Have your headaches gone? Where do you live? I live in Kent, England. Maybe I could go to see the same specialist you saw.

    sad  

Katiusha


Gabby123
Regular Member


Date Joined Jan 2007
Total Posts : 113
   Posted 7/7/2008 5:12 PM (GMT -7)   

Richard,

   Hi, I usually post on the GERD forum but I couldnt help but read your post.  I don't have chronic daily headaches but I do have chronic debilitating pain in my face and ears and throat that has stolen my life away from me.  The pain is agonizing and the only way I can get any relief is if I dont eat, and when I don't eat I get chronic migraines, and its horrible.  I feel so bad for you and can definately empathize with your pain.  You are in my prayers and I truly hope you can get the help you need to cure your condition.  What an awful thing to live with everyday.  Headaches are so horrible.  Please stay strong you can get better.

-Gabby


Love, 
Gabbs
 
 
DX: Gastroparesis, Bile and acid reflux, esophagitis, barrets esophagus, esophageal motility disorder, painful and difficulty swallowing, depression, anxiety, a piano player with carpral tunnel syndrome
 
                    ~ Miracle, Healing ~


Stayce92
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 7/7/2008 7:45 PM (GMT -7)   
Katiusha,
 

My old neurologist went on treating me (without helping me) for four years and never referred me to a Headache Specialist.  I went back to my regular doctor for something, who was the first one to see me when the headaches originally came about, and she said I might want to move on to another neurologist.  She recommended this guy, I had no idea there was such a group out there. 

 

I am now on Indommethican, it will be a week tomorrow.  It’s the only treatment for Hemicrania Continua, which is a rare form of headache; this is supposed to be the reason  so many people go undiagnosed.    The good news is the medicine is suppose to work really well, if not I am back to the drawing board.  So far I can see an improvement, but they are not gone yet.  I am holding my breath as I hurt every day. 

 

I live in the United States, so I don’t think you could see the same doctor as I did!  Are you able to Google “Headache Specialist” and pull one up in you area?  They really do know a lot more then the regular neurologist do.  I would highly recommend doing this if it is an option. 


Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/8/2008 3:51 AM (GMT -7)   

 

Hello Stayce92,

smurf  Thank you for the advice. I hope the medicine gets rid of your pain.

sad  I saw my phsycologist yesterday. It looks like the same story again, telling me to ignor it. Her advice was not to do anything that makes the headaches worse! But almost everything does though. It doesn't take a genius to figure that out. Seems like she doesn't mind condemming me to a life in bed. And she was asking why I don't look happy! Why I was resting my head on the table. I was in pain! It seems no matter how many times I explain, she doesn't understand. Its very obvious that she doesn't know what its like to be in pain. Lucky her.  

scool  I'll look on google to see what I can find.

Katiusha

Stayce92
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 7/8/2008 3:40 PM (GMT -7)   
Katiusha,

Quit the phsycologist!! She does not know the first thing about helping someone in chronic pain. I would not think that seeing someone like that could possibly do you any good. That's her best advice, "don't do anything that makes the headaches worse"??? Wow. I would Google a new phsycologist while you are at it.

Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/9/2008 3:14 AM (GMT -7)   

 

Hi Stayce92,

You are right. I was seeing her because I was hoping to get rid of the headaches without medicine. Maybe if I keep badgering her she will give me coping strategies other than "ignor it and do not do anything that makes it worse". I can't find another phsycologist because this one is probably one of the best. She works in London where the best are. My neurologist said she would help to at least get the pain down a little.

How is it going with your medicine? What was life like for you before?

Best wishes,

    :-)  

Katiusha


Parrotrosie
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/11/2008 4:39 AM (GMT -7)   
Katiusha...
 
Most definitely seek the services of a Headache specialist (mine is a neurologist).  I also suffered (altho I must say not nearly to the extent you are) for about 15 years before anyone even told me of this specialty.  I even found a Headache CLINIC! here....
 
See if there is one in your area.  I beleive the clinic is in a sleep disorder center, where you would spend the night, and you would have to fill out pages of questionaires prior to your overnight, but if it gets to the root of the issues, it would so be worth it. 
 
You have a lifetime ahead of you, please seek your treatment aggressively!  I would say, you can always back your treatment down later as you find causes, but get that pain out of your life so you can think clearly and handle your life!  My brand new headache doc is great!  He BELIEVES I have pain and SHOULD NOT have to live with it.
 
Other doctors are like...well...just go lie down.  Well...we all know we cannot lie down 2 , 3, 5, 6, 7 days a week!  They just really have no clue or understanding.  I get my migraines about 3-4 days a week.  I have a job and a family.  That mix just does not cut it.
 
I agree you should go seek additional treatment...if you want to stay with the therapist, if you are having success with other things...good and fine, but seek additional treatment on those headaches...and it won't hurt to ask God for some guidance if you are of that mindset as well :-)    Take care of yourself now!  Think positive!  You will find relief I am sure of it!  Keep searching scool

Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/11/2008 7:00 AM (GMT -7)   

 

:-)  Hello Parrotrosie,

eyes  Thank you for your advice. Its nice to find someone who understands. I can't do any searching myself, my parents are doing. It is strange that my GP never refered me to any specialists except paediatricians. I stayed over night at a hospital to be observed and all they did was give me medicine form my nausea and cocodamol with ibuprofen for my headache (it did not help).

confused  How is it going for you? Have your migraines gone?

mad  My phsycologist was saying "ignor it and don't do anything to make it worse". I have already done that for seven years. Did all your doctors tell you to ignor your migraines? There were only a few doctors who told my parents to keep asking for help, to find out why I have the daily headaches.

sad  What helps your migraines? I haven't found anything that helps my headaches. Where can I find a clinic, like you went to, in England? I live in Kent.
 
Best wishes
♥♥♥♥♥♥♥♥♥
Katiusha

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 7/11/2008 10:50 AM (GMT -7)   
Hi Katiusha,

Sorry I missed this thread before. I am in the UK and see a Headache Specialist at the National Hospital for Neurology and Neurosurgery in Queens Square in London. This is a centre of excellence for Headache and has some world renowned Headache Specialists working there!!!

I have Hemicrania Continua and Migraine and is was not until I saw a Headaches Specialist at the National Hospital did I get any results that would improve my quality of life.

Talk to your GP and get yourself referred to a Headache Specialist at this hospital, you will not regret it!!! Let me know how you get on?

take care

Ann
Co-Moderator of the Migraine/Headache Forum


Parrotrosie
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/11/2008 10:24 PM (GMT -7)   
Believe it or not...plain old Excedrin Brand helps my headache pain immensely - I would imagine you can find that in England...
 
And now that Ann has chimed in with help in the form of a headache specialist on your side of the pond, hopefully your parents can get you started there.
 
Ibuprofen never did anything at all for my pain.  My migraines are not gone yet, but we are working on it.  I tried amytriptaline with no success and now we are trying topomax and I think I am getting some relief but I am only on 100mg per day and it has only been about six weeks and these things take some time, so I am hopeful.
 
I have to say, the headache specialist is working with a vengance to go after this pain tho! so best of luck to you and keep at it!  Ok! scool

Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/12/2008 3:33 AM (GMT -7)   

Ann,

☺Thank you very much for your advice. I will ask my parents. I don't know why my GP didn't refer me before. I had this for seven years. How to make the doctors understand that it is affecting my quality of life? They seem surprised that I need to lie down and that I am not smiling.

Parrotrosie,
 
☻I hope your pain goes away. I don't know Excedrin Brand. Have you tried imigran?
 
♥♥♥♥♥♥♥
 
Katiusha

Parrotrosie
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/12/2008 8:14 AM (GMT -7)   

I have not tried imigran...I have tried several prescription migraine meds that did nothing.  Excedrin is just an over the counter asprin/acetaminophin/ with caffeine added.    I don't know why it works...Over here they even have one labeled  Excedrin Migraine but it the exact same ingredients as regular excedrin.    Perhaps you have something over the counter there with similar ingredients...have Mum check around for you.

I don't know why some doctors just don't get it.  I have had several doctors over the years dismiss my headaches as fatigue, motherhood, stress, whatever.  This new doctor I have, straightaway, said you have been having headaches for HOW LONG?  And sent me right to the specialist.  I see that to be a common thread here on these boards as well, so ... keep at it :-)    My headaches started when I was 15 and I am now 42 altho the were not nearly as severe as you are experiencing.  They have recently gotten worse so I have sought help more aggressively.  You take care now OK!  You are not alone!


Stayce92
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 7/12/2008 8:33 AM (GMT -7)   
Katiusha,

I hope you are able to get your parents to take you to the place Ann recommended. Ann and I have the same sort of rare headache, it is only upon seeing a specialist that this is uncovered. A specialist knows things that regular doctors do not.

I am doing really well right now. I am weaning myself off all the other meds my orig. neurologist had me on, and if feels great to get off this stuff, Topomax being one of them. I will begin weaning myself off a third med starting next week. I am down to feeling around a one or a two level pain every day; this is down from feeling anywhere from a two to a six level pain every day before starting on the higher doses of Indommethican. I can only see this getting better with more time.

It really breaks my heart when people go through this and are surrounded by people that just don’t understand. I was lucky enough to have a husband and peers at work that really had sympathy for me. I was never told my pain wasn’t real or to “just get over it”.

My I even suggest that you print some of this out to let your parents read it?

Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 7/12/2008 2:25 PM (GMT -7)   

Thanks,

♣I don't feel alone since I joined this website. I do let my parents read this. That's why I'm on here, in hope of finding advice that my docs didn't give me for some reason.

Its good you are in less pain Stayce92. I hope it goes away completely and never comes back.

With best wishes,

♥♥♥♥♥

Katiusha


Richard VI
Regular Member


Date Joined Feb 2006
Total Posts : 44
   Posted 8/16/2008 4:22 PM (GMT -7)   
Hi!!! to everyone who has left messages on this forum!... i have continued struggling along and for some reason i wasn't sent any notice that people had written on here... i am really annoyed i didn't know people had responded. but better late than never

Ok, to get straight to all the questions which i have read.

i am still currently suffering 24 hours a day, this constant headache has really stolen all of my life now for 5 good years. i am currently under one of the best Headache Neurologists Prof P.J Goadsby who i see privately at Queens Square in London, UK.

But in saying that i am only able to see him once every 3-4 months which is proving almost unbearable as it is extremely dificult for any doctor to successfully concentrate and treat a young patient with a complex condition such as constant severe headaches seeing them 3 times a year...

my mother and my family have been torn apart by my condition, and i am now considering very very soon maybe in the next few weeks going to America to the famous MHNI Michigan Headache Institute Hospital.

* IF ANYONE HAS INFORMATION OR EXPERIENCES IN REGARDS TO THE 'MICHIGAN HEAD PAIN & NEUROLOGICAL INSTITUTE' PLEASE DO GET IN TOUCH URGENTLY!! I WOULD SOOOOO APPRECIATE IT!! *

Apart from being under Prof Goasdby for almost 2 years with not even a 1% improvement so far in my condition, i have also been through probably one of the most diverse selection of Neurologists working all around London with zero breakthrough's and no improvement, just more and more money going down the drain...

for all people on this entire forum i think all headache sufferers need to help each other and something needs to be set up where all similar individuals can seriously discuss, chat or even get in direct contact with fellow sufferers... i think Healingwell.com is a great site but for those who literally like me can not go on anymore and are desperate and passionate about getting better for good we really need to all in some way be in much more contact or form some form of online chat group...

from my experience of approximately around 15 of the best Neurologists practicing in Greater London in the UK, one thing which is clear is they never have enough time to really get to the bottom of the problem... everything runs for the timed hour or more and then its out the door with a new prescription or glimmer of pretense hope as you walk away. BUT NO IMPROVEMENT.

NOTE: My condition still remains the same although it has worsened in the last 6 months.

- Constant Pressure like sensation over entire scalp
- Constant Pain, ache in the face, the temples, above the eyes, behind the eyes
- Often blocked, stuffy nose, lots of phlegm in sinuses
- Dizziness, confusion, generally unable to focus or concentrate
- Often sharp intense throbbing pains, around eyes, over temples and scalp
- Constant dry scalp, dry itchy hair, Alodynia burning pain of hair
- Dull but severe Pain around eyes, like severe constant eye strain all day
- Depression obviously & increased anxiety


My best wishes go out to anyone who has written on this forum to me, and my appologies for not writing back, please do write anything you want & i appreciate more than you can imagine people having an interest in my case.

Best Regards

Richard X ;-)




P.S Please feel free to email me or directly get in touch with me through my email address which is

Post Edited By Moderator (Annuk) : 8/22/2008 4:47:48 PM (GMT-6)


Katiusha
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 8/20/2008 4:55 AM (GMT -7)   

blush   cool   eyes   :-) rolleyes

Hi Richard,

Sorry you don't feel better because nobody helped you. Its not a surprise. All my docs say I'm ok even though its obvouse I'm getting worse. I don't think anyone in the UK can help. I don't now about USA. In Russia there are many different clinics and hospitals (all very modern. We are not savages) where they can diagnose and treat neurological problems.

I left England. There's no hope there. I've been in Russia for over a week now. The docs say it looks as if I didn't see any doctors for a long time.  I will be put in one of the best clinics in Moscow in September (Now they are closed for renovaion). If you are interested, I can give some information.   

Best wishes,
 
Katiusha
 
P.S Did you get my emails?

Richard VI
Regular Member


Date Joined Feb 2006
Total Posts : 44
   Posted 8/21/2008 5:46 AM (GMT -7)   
hi Katiusha!

Yes sorry i did recieve the emails, but didnt realise who or what is was, i was having a really low period at that time, and i was close to wanting to give up... its good to hear from you it is terrifying learning there are a few of us with almost identical problems HERE!! its soooooo messed up, our lives are basically out of our control!

i am possibly being sent by my family to Michigans headache institute in the next 2 months, you can see their site at www.mhni.com, i did not have any info on Russia, i mean so many people reccommend here and there my family are soo fed up from it all they just want me to go to the best of the best and hopefully piece parts of my life back together at long last...

please do email me any information on the places in Moscow, u never know we could end up their together! LOL

i would love to actually meet with someone in a similar state to me, i would find it so helpful to spend hours trying to work out what has gone wrong and why maybe we do suffer. The UK is a joke, we have invested thousands here, i am still seeing Prof Goadsby at Queens Sq, he is known across the world as one of the best in Headache and people do swear by him. i meet with him again after now almost 2 years as his patient on sept 8th, we will be making a decision on what he says that day whether i go straight to USA. but the whole thing is so messed up... i dont know at times...

would love to hear back from you.

Best wishes

Richard
 
 
again I have edited your post to remove your email addy for your security

Post Edited By Moderator (Annuk) : 8/22/2008 4:46:21 PM (GMT-6)

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