Headache Challenge

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2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/2/2008 2:48 PM (GMT -6)   
Hi Everyone, :-)

here's something that is truly grinding me down, can anyone offer any
constructive advice please? I know it seems like a long message but
believe it or not I have really tried to make it as brief as possible but
at the same time answer most questions up front that may be asked. :)

Main but not all symptoms and feelings - as brief as possible.
about 80% of the descriptions and symtoms are as found at:
http://www.headaches.com - have asked them but no reply so far.

ALL of head aches, neck ache with some pain, eyes ache, bridge of nose and nose aches, upper teeth throb, face feels flushed, tinnitus, jaws and temples ache, feelings of giddiness, feels like I am always on the edge of a sore throat, voice occasionally goes "hoarsish" and quiet sounding, food sometimes does not seem to go down properly after swallowing (kind of sticks to back of throat), between neck and shoulders ache sometimes, back of and base of skull aches, bending over makes face and head feel like they will explode, sometimes light headed on rising, nasal passages seem very narrow especially when lying down, back and roof of mouth (including tongue) often feel kind of tingly or itchy, and a few other similar bits and bobs now and then. Usually worse first thing in the morning. Do you need more history and the timeline of progression or developments includind attempted remedies, just ask? Had an MRI head and thorasicspine scan in JULY 2007. Still have NOT sat down with and been told results by anybody! Am assuming the silence means things are OK?

Thanks once again for any advice you may forward to me. :-)

>>>>>>>>>> MORE DETAILS <<<<<<<<<<<<<<<<<<<<<<<<<<<


Hi, I have been CONSTANTLY suffering, gradually getting worse, for well over three years now. I have a long history of "the go away, there's nothing wrong" stuff from doctors, dentists, specialists, etc. I really know that I have this pain and am becoming increasingly depressed and miserable with it all. My quality of life for various reasons is very poor despite trying many ways to tackle the problem. I can even put a date to when this all seemed to commence - this is dismissed by doctors as being "over, can't be" or "coincidence" - or it's just "the way I am" (self-perpetuating because I am thinking about it (RUBBISH)!

I am desperate to end this suffering and would like to know if I sent (email) to you a comprehensive history, past and present, would you be able to give me some advice please? This would most likely run to several pages! I have many of the symptoms and pains decribed on your site, the worst of which at present is feeling like my head could explode when I bend over. Also it feels as though my whole face has an underlying infection because it is becoming increasingly "tender" and feels "full". I have also long term constant neck aches/pains which I know does contribute to some of this. I am now also suffering excess stress and living basically in fear of what will happen next?

I feel abandoned and misunderstood by own medical service and do not know where to turn. THEY SIMPLY SEEM TO *NOT* BELIEVE ME WHEN I SAY HOW BAD IT IS! A typical response is to offer me medications of various kinds to try and mask it. My research has led me to believe this is NOT the way to go. Have tried amongst other things - relaxation, stress management, Qigong, Tai-Chi, EFT, soothing sounds, mouth guard, inversion table (very uncomfortable in and around the neck and face area), self hypnosis, self-improvement books, some physiotherapy - the ONLY thing to help a little, and accupuncture. Have purchased and read a few books (such as "cure your own headache", " trigger point therapy", "how to get rid of tension headaches" regarding this matter but so far to no avail. Due to have a back tooth out in middle of January - not holding my breathe though! I am alone in this and need some support and encouragement because some of this needs an understanding or professional helper.

I shall not go into further details here as I am sure you must have heard it all before? But if you could/would help and need more details please just ask for exactly what you require to know.

As I am in the UK (Nottingham) I wondered if you could/would describe some kind of action I could take. Either as to the EXACT type of people/professionals I should be seeing and/or some kind of helpful home treatment/remedies I could try?

Generally I am in good health, eat what I belive to be a fairly varied and balanced diet. NEVER drink tea, coffee or coca-cola and eat very small amounts of chocolate. I am not overweight, do not smoke, exercise regularly and drink about 14-18 units of alcohol per week. Hope this helps?

Thanks very much for reading, all the best - Michael :-)

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/2/2008 4:27 PM (GMT -6)   
Hi Michael,

Welcome to Healing Well. Sorry to hear that you are suffering so. Ok just a few questions, have you seen a Neuro in Nottingham? What have they said about your headaches? Do you keep a headache diary - often folk are not taken seriously until this is done? How long do your attacks last?

A couple of things that I have picked up is that you do eat chocolate - I know it is small amounts but it does have an effect on some sufferers, alcohol too!! There are a number of other triggers like oranges (citrus fruit), hard cheeses and MSG (monosodium glutamate) this often comes in different diguises such as, flavouring, hydrolysed vegetable protein!! Some preservatives can induce headache too! Also nitrates and nitrites commonly found in cold meats!

Just a few thoughts there for you, if you want to chat in more detail please feel free to email me, just click on the envelope under my name to the left of this post.

I would say though I am not a Doctor and therefore cannot give medical advice, or a diagnosis, but I can comment from my own experiences!!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


sarahswan
Regular Member


Date Joined Dec 2007
Total Posts : 57
   Posted 1/2/2008 8:27 PM (GMT -6)   

Michael,

I can relate to being in migraine pain, and not feeling like anyone is listening or able to give help.  It is a very frustrating feeling, and I'm sorry you're experiencing it. 

As Ann said, there may be triggers in your food you're not aware of.  MSG and nitrates are major triggers for me, and I had no idea how common both were until I went to a neurologist specializing in migraines.

Here is an article that may help explain more about MSG and how it affects migraines: http://ezinearticles.com/?id=888663

~Sarah


2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/4/2008 6:28 AM (GMT -6)   
Thanks annuk and sarahswan for your replies. :-)

To annuk - The amount of chocolate is VERY small and sometimes NIL for weeks. Cheese and other dietry trials have been done and apparently I can not find any triggers at all. The only test not done is "gluten" free diet. This is because it would be pretty hard for me and aslo I have absolutely no other "gluten" symptoms.

Thanks for the invite, will bear it in mind because even though I know you are not a doctor your experience may offer good advice or tips.

to sarahswan - thanks but as stated above I have really tried to eliminate or discover possible dietry triggers, to no avail. Having said that might I add that POSSIBLY peanuts make me feel slightly better and marmite makes my throat feel slightly worse? Would anyone know if this could be based on fact or maybe just coincidence or imagination?
As stated I believe I eat a fairly healthy balanced diet and am not one for eating too much processed food.

Thanks again - Michael :-)

2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/4/2008 6:29 AM (GMT -6)   
http://www.headaches.com - THIS IS NOT AN ADVERT - I HAVE NO ASSOCIATION WITH THEM BUT...

Does anybody know exactly what these people do. They have replied to my message but basically say that if I want some answers I would have to visit them in person. This is not affordable or practical right now because they are thousands of mile away AND I suffer agoraphobia, shame really otherwise I would consider going into debt.

This site really does seem to hit the nail on the head for me and I can not understand why my own medical service can not or does not offer the same or similar treatment if it is so effective?

Cheers - Michael :-)

Scooterlady
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 1/12/2008 1:28 AM (GMT -6)   
2020vision said...
 
Main but not all symptoms and feelings - as brief as possible.
about 80% of the descriptions and symtoms are as found at:
http://www.headaches.com - have asked them but no reply so far.

ALL of head aches, neck ache with some pain, eyes ache, bridge of nose and nose aches, upper teeth throb, face feels flushed, tinnitus, jaws and temples ache, feelings of giddiness, feels like I am always on the edge of a sore throat, voice occasionally goes "hoarsish" and quiet sounding, food sometimes does not seem to go down properly after swallowing (kind of sticks to back of throat), between neck and shoulders ache sometimes, back of and base of skull aches, bending over makes face and head feel like they will explode, sometimes light headed on rising, nasal passages seem very narrow especially when lying down, back and roof of mouth (including tongue) often feel kind of tingly or itchy, and a few other similar bits and bobs now and then. Usually worse first thing in the morning. Do you need more history and the timeline of progression or developments includind attempted remedies, just ask? Had an MRI head and thorasicspine scan in JULY 2007. Still have NOT sat down with and been told results by anybody! Am assuming the silence means things are OK?

Thanks once again for any advice you may forward to me. :-)

>>>>>>>>>> MORE DETAILS <<<<<<<<<<<<<<<<<<<<<<<<<<<


Hi, I have been CONSTANTLY suffering, gradually getting worse, for well over three years now. I have a long history of "the go away, there's nothing wrong" stuff from doctors, dentists, specialists, etc. I really know that I have this pain and am becoming increasingly depressed and miserable with it all. My quality of life for various reasons is very poor despite trying many ways to tackle the problem. I can even put a date to when this all seemed to commence - this is dismissed by doctors as being "over, can't be" or "coincidence" - or it's just "the way I am" (self-perpetuating because I am thinking about it (RUBBISH)!

I am desperate to end this suffering and would like to know if I sent (email) to you a comprehensive history, past and present, would you be able to give me some advice please? This would most likely run to several pages! I have many of the symptoms and pains decribed on your site, the worst of which at present is feeling like my head could explode when I bend over. Also it feels as though my whole face has an underlying infection because it is becoming increasingly "tender" and feels "full". I have also long term constant neck aches/pains which I know does contribute to some of this. I am now also suffering excess stress and living basically in fear of what will happen next?

I feel abandoned and misunderstood by own medical service and do not know where to turn. THEY SIMPLY SEEM TO *NOT* BELIEVE ME WHEN I SAY HOW BAD IT IS! A typical response is to offer me medications of various kinds to try and mask it. My research has led me to believe this is NOT the way to go. Have tried amongst other things - relaxation, stress management, Qigong, Tai-Chi, EFT, soothing sounds, mouth guard, inversion table (very uncomfortable in and around the neck and face area), self hypnosis, self-improvement books, some physiotherapy - the ONLY thing to help a little, and accupuncture. Have purchased and read a few books (such as "cure your own headache", " trigger point therapy", "how to get rid of tension headaches" regarding this matter but so far to no avail. Due to have a back tooth out in middle of January - not holding my breathe though! I am alone in this and need some support and encouragement because some of this needs an understanding or professional helper.
******************************************************

Dear Michael,

 

PLZ research MYOFASCIAL PAIN SYNDROME!

 

If you contact me via email (click on my name), I can send you info that I saved on my pc.  The docs are clearly written & with diagrams showing the muscles involved & how they affect you.

 

Your symptoms are what I went thru when mine first began. My dx was referred to as "Atypical Facial Neuralgia.  It was quite a few yrs later when these symptoms finally got a real name - MYOFASCIAL.

 

I know the feelings where you are at right now .. your confusion, desperation & the emotional abuse from the medical profession.  "Been there, got that”!

 

If you do email me, put "HealingWell-Michael" in the subject line so it will catch my attention.

 

Joan

 

 

 

2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/12/2008 7:13 AM (GMT -6)   
Well thanks Joan,

after this post I shall definitely click and send you a message. :-)

The latest is simply that yesterday I had the tooth extracted with no apparent problems so far. Pretty tender and cheekbone hurts but I expect things will heal OK. Whether it makes any difference to anything as described above we shall have to wait and see? Thanks to anyone that posts with ideas or help.

Mucha appreciated - Michael :-)

2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/12/2008 7:22 AM (GMT -6)   
Have sent message to Joan (Scooterlady) - please let me know if for any reason you did not receive?

Thanks - Michael

2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/15/2008 6:22 AM (GMT -6)   
This is just a quick reply to say that yesterday I was told the
bad news that I have a cyst inside my right sinus from MRI.

Now waiting for appointment at ENT to see who gets to go in
and remove - either Maxillofacial or ENT? Through the nose or mouth?

I am devastated at the prospect because of my pills, potions,
medication, etc MASSIVE phobia. Am scared to death already!

I feel after such a miserable life in general AND all of
this for over 3 years I have had enough. Just had tooth out
and that's still sore but it feels like it's firing up the
whole right hand side of head and face, hopefully it will
subside soon?

This seems like the last straw and I shall see just how depressed I become. I am so alone with no support or help
from anyone.

Thanks for reading and sorry to be so pessimistic but that
just seems a way of life for me I'm afraid.

I shall try my best to keep motivated and struggle on through.
My daughter does not deserve me to be this way, it's heartbreaking to think about. All the time trying to keep
it to myself.

All the best - Michael

Scooterlady
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 1/15/2008 3:47 PM (GMT -6)   
Michael ... I understand. I'm alone also, no hubby, no kids, no family. I can be rough & lonely. "Forums" are helpful..so plz check arnd for others that you might like.
+++++++++++++++++
HERE'S a site for you to check out! Women are invited, but there are areas that are for men only. It's a good site. You might want to post your symptoms there also.

http://www.menwithfibro.com/home.html

I'll write again asap, hopefully later ...

"We'll" talk....

Best regards,
Joan

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/15/2008 3:56 PM (GMT -6)   
Hi Michael,

I am sorry to hear your news! Life can be very tough with no support - I have brought up my 19yr old son alone with my chronic headache condition!

I totally understand your apprehension about your treatment but you will get through this! Keep posting here and someone will usually get back to you.

take care

Ann
Co-Moderator of the Migraine/Headache Forum


2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/17/2008 4:24 AM (GMT -6)   
Thanks to both of you - at the moment I am not in any mood for anything. But I shall be back any day soon so PLEASE keep a little interest going and call back?

Hope you understand?

Thanks again - Michael

2020vision
New Member


Date Joined Jan 2008
Total Posts : 8
   Posted 1/22/2010 2:03 PM (GMT -6)   
Hi All,

just a quick update - 2 years down the road and guess what?

THINGS ARE JUST THE SAME!!!!! Good, eh?

Wishing you all the best - Michael

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/25/2010 6:57 AM (GMT -6)   
Hi Michael,

So sorry to hear that you are still suffering so much! Go back to your GP and ask them to refer you to the The Headache Group, National Hospital for Neurology and Neurosurgery in Queens Square in London. These people are a centre of excellence where treating Headache in this country is concerned!!!

The long trip will be well worth the effort and the wait. Unfortunately their waiting lists are long so the sooner you see your GP about this the better. I waited 2 years to see them, which sounds like far too long but when I got there, it was the first time I ever met anyone who believed what I was going through, but even better they also knew how to treat it!!!!! So it was well worth it for me!!!

If you want a specific name of a Doc please email me and I will let you have one!! All the best with this!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

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