Headache Challenge

[2020vision]

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 and I would estimate about 80% of your excellent website applies to me either all the time or a considerable amount of the time. 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. 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 :)

[2020vision]

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.

Much appreciated - Michael

[2020vision]

My research has now confirmed what I said all along - "I have the problem or feelings that I say I have, they are NOT imaginary or self imposed by anxiety".

There are far too many people around the globe with these kind of symptoms and problems, some of which do find relief from one method or another. Many do not even mention that anxiety is a causing factor but many do suffer anxiety and depression because of it. The vast majority do NOT find relief from pills and potions prescribed by many doctors to try and mask it. Many are like me - just suffering and trying to find answers. At least I am not alone.

How much longer can this carry on? Where can we turn? Are there any doctors with this problem and how do they handle, deal with or treat it?

Good Luck To You All.

May you all find a solution - Michael :-)

[2020vision]

Hi LAH,

You have obviously had considerable pain and suffering with your own headache, also more than a little from life in general. Sounds like you sometimes do as I do - " just keep going in the face of advesity"? Well done!

Do you have any links or pointers to how or where I may be able to distribute any information to experts if I did manage to get a good overall summary of my problem including MRI info? Hopefully they would look at it the way I say it and not simply label it as anxiety?

Thanks - Michael

[2020vision]

Hello,

I have left it a few days between posts to see if any good ideas come up? Some of this sounds like it's worth asking a doctor about sometime but I feel that if I did the response will surely be - " we are going round in circles, this is just the way you are". I am actually "scared" to go to the doctors now for fear of more rejection and "wasting their time" or "we can not afford the resources required, you have had various tests already", "there is nothing wrong - go home and take a paracetamol", etc.

This is why I have finally had to start trying to sort this myself. As stated earlier I am NOT keen on medication except as a complete last resort. I shall however consider collating everything I can into one place so that I may try to find experts opinions online as suggested above by Lifesaheadache. This actual forum post I have made virtually says it all other than the timeline of events. Sorry you have had such a bad time of things Lifesaheadache. Hopefully things will still improve for you? Thanks for sharing your story too.

Also those tests suggested by VanessaMD have not even been mentioned other than a normal blood pressure test that said pressure OK but drops on rising as stated. Having said that they do sound somewhat scary to me. Also I feel confident enough to say most of the points mentioned do not really worry me for various reasons, such as I do keep active and can sit or stand for ages with no apparent problems. It feels like blood can easily get into my head - it just seems it has trouble getting back out of my face and I feel the pressure as described above. The head/neck pain can become very bad at times but it's the overall CONSTANT nagging headache which wears me out. I expect some of you know what I mean? Generally it is not excruciating, just like a bad hangover, especially in morning.

Thanks again to everyone, all the best once more, thanks for your understnding and patience - Michael

P.S. I am actually thinking of offering myself up to the local major hospital for relatively new or training purposes in subjects such as craniosacral or triggerpoint therapy, myofascial pain syndrome, non-invasive dental techniques, or related possible things? What do you think of that idea in general and how would I go about it? This may actually result in finding answers or achieving some relief, who knows? Does this sound crazy or going too far?

TTFN - Michael

[Vanessa Lacuesta]

Hi Michael,

Allow yourself to calm down and count the blessings in your life.

Have you had a carotid doppler done?This checks any blockage in main blood vessels within the neck which supplies blood to the brain.

Are your blood electrolytes( calcium,sodium and potassium levels ) normal?

Have you had blood pressure checked in all extremities?

Certain positions may cause pooling of blood in parts of the body i.e. prolonged standing causes blood to pool in the lower extremities and some prolonged bending may cause the face to appear flushed.

All the best.

[LifesAHeadache]

Micheal,

I'm not offended - and I am going to do something very rare.  Tell you my story.  At age 5, my father left us, he took the car, everything.  I started taking care of my mother at that age.  Every morning she would scream at me throwing fits, I can't explain the fear I felt if I couldn't find her car keys.  I went to 15 different schools - she remarried when I was 10.  My stepfather had 5 daughters I had to take care of - they were allowed to take anything from me including the pain pills I had for migraines. I could never talk back to them, they "might kill themselves or my stepdad might divorce" my mom.  If we went to a fancy restaurant, everyone ordered steak, I was mandated to a hamburger so he could see how cheap I was.
My mother spent her life at the mall, I never had more than one pair of jeans and 2 maybe 3 shirts.  I bleached a shirt when I was 15 (I thought it might look newer, I liked a boy) my mom smelled the bleach and shoved my head in the washer so I could smell it.  And the headaches got worse.
They helped with part of my college, because "I was not going to be a hoosier."  I worked night shifts and in bars to pay for the rest.  I was not allowed air conditioning at home - 100 degrees outside.  The headaches got worse.
I married a man who I thought loved me - it didn't take much.  I went cold turkey on all meds to have my beautiful daughter working past my due date.  I worked hard - I made good money, I put him through two schools.  He got a good job, became an alcoholic and mean.  I'll spare the details.  I got sicker.  My own research led to the blood test of my diagnosis of SLE Lupus and RA, but still didn't explain the headaches. I became unable to work. - One day my husband started in on my daughter, the dog, and called me a lazy c-word.  Again I'll spare details.  When he left for work in his $40,000 SUV, I packed up my little escort and checked into a hotel with cash.
It was a messy divorce that took every dime I had, no job, panic attacks, severe headaches and a daughter that he constantly threatened to put into a mental hospital.  Fathers can do that no questions asked if it is during their visitation. Again, I'll spare details.  I vomited between the lawyer meetings but eventually he blew up, punched my daugter above her jaw and I gained custody  

But I am now penniless, the savings is gone - my daughter is in her second year in the private girls school she had always been promised, she is thriving there but he doesn't have to pay any of it.  He gets the big house and car, I paid off all his bills.  He doesn't pay all the child support, and I am in severe pain EVERYDAY with no job.  We can't stay with my parents for even a few weeks because my stepsister needs a place for her things while she vacations in luxury locations every six weeks.   My daughter is now thriving, straight A's at a top school and I have to find a way to pay for it.  I am out of money and still NO diagnosis for the pain but I am appying for jobs everyday.  And I am researching everyday.  And I try to help people on this board whenever I can.  I am blessed, I found a neurologist who is working with me, but it IS trial and error.

Read the archives, there are plenty of stories out there.  I know you are upset.  But my offer still holds, if you want to clearly document your history to date, there are profound specialists that would look at the data.  And if you are unhappy with your government's system then find a group to help change it.  Take Care.