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 :)

[LifesAHeadache]

I have read all your posts twice and have checked out that headache site.  It's a dental office that may be very good but they have basically listed a lot of symptoms that can come with TMJ etc but unfortunately can come with a lot of neurological maladies.  My personal opinion is that they are not a well-known headache center in the states.  That is my opinion only but can supply you with the biggies if you ever want.

Now, YOU OBVIOUSLY ARE NOT CRAZY - YOU ARE IN A LOT OF PAIN.  And are limited in seeing doctors and getting prescriptions.  But you are doing great, this is as good as the process gets on-line, we ask questions, you answer - we try something else.  Don't misunderstand my last approach. - you want to get to the bottom of this right?  Starting with what we know for sure - You have some malady causing SEVERE PAIN - you also have managable anxiety, and managable agoraphobia, and Obviously the PAIN is your first priority.  The only reason that the anxiety and agoraphobia are important at this point is because it is VERY common for people with severe migraine, cluster, intractable migraine etc.. to have anxiety, agoraphobia or depression.  It is a correlation not a cause.  So to me, this is the first thing to try.  And yes, scientific discovery is hypothesis, and trial and error.

And for getting those MRI's - This is the World Wide Web Micheal, you are not stuck with only those doctors in your area anymore.  MRI's come on DVD's.  You can literally pull up a picture of a scan, attach it to an emai and send it across the pond.

It sounds like the SSRI, SNRI hurt your head more than helped.  Forgive me if I have that wrong.  But if it made your head pain worse then that is important.  Migraines, Anxiety etc...are all due to neurotransmitter functioning.  That is why a lot of neurological disorders are treated with anti-depressants.  Who cares about the depression, they get rid of the pain.  Anxiety is treated long-term with anti-depressants even though you may not be depressed.  But they keep that name (here in the states anyway) because there are also meds called anti-anxieties like Xanax etc...

There are old anti-depressants that are still on the market because they help so much with pain.  Elevil is cheap and very effective and does not have the quick actions of those SSRI's.  People who can't take SSRI's take tricyclics like Elevil and Pamelor.  They are experimenting with Elevil post surgery, for its pain relief properties (Not in place of pain meds, let's be clear)  Even in the states, this is the process - you can get an MRI, maybe an MRA but beyond that is very difficult.

I know you want to get to the someone who can say with confidence "you have a gross inflammation of your 3rd cranial nerve and this treatment will fix it."  Unfortunately, it is not that easy, sometimes.  I swear to God I wish it was.  Do you have something heavy for pain - I mean like Vicodan or Percocet.  It is not fair to you or your daughter for you to be in this much pain while looking for a diagnosis.  Can you go to the ER there?  I am not a doctor - but I humbly say I don't think this is Vertigo - I think your dizziness is one of the symptoms.  Did they ever give you a lumbar puncture?  As I ask that - I know the frustation you feel - just keep answering questions.  Take Care and Kiss that daughter of yours - she loves you very much.

[2020vision]

THANKS for your time and response VanessaMD

Just got back from walk and feel so down - everything still seems worse. I've had enough!
There seems no point at all to this miserable existence. Also add the fact I am becoming increasingly scared out of my brains. ONLY my daughter keeps me going to be honest.
Not even mentioned a few things wrong yet because they are all related I presume?

I know that a lot of my descriptions criss-crosses from one thing to another - e.g. tension headache, migraine, dental, anxiety, ear infection, muscular (neck), sinuses, etc. But I can only describe the way it is? Mostly the blood pressure in my face, head and neck and the feeling of an overall infection just waiting to explode is the most worrying. All I want to know is why so I can tackle the root cause. My face and neck becomes rapidly very red and visibly enlarged when bending over. This BTW has been cross-referenced with one or two acqaintances to check that it is not my imagination. I am familiar with anxiety and stress and what it can do but this is and has ALWAYS been something else? Even after ONLY 3 weeks of the headache commencing back in September 2004 I knew AND said to one or two people this is not normal and will lead to major problems and trouble - BOY WAS I RIGHT! But if I knew then, how come after all this time the doctors can not work it out? Largley I say because they are generally wearing "anxiety blinkers". Giving me the bare minimum of time and effort to cover their legal backs I expect?

Just over a year ago I could do hand stands with my daughter and feel ONLY the typical blood rush to the head (in spite of head/neck ache) - NOTHING like this. I am now awaiting on a Trigger Point Therapy book I have ordered to see if that will help - but being on my own I probably won't be able to follow it properly. I have actually already spent and wasted considerable time and money on other things. Looks like eventually I shall have no choice but to take the "eat the pills, mask it and suffer more route"? That I feel will be the end?

Even if I can not cure the problem why oh why can I not get any answers? - "It could be this - it could be that - it could be something else". I have tried loads of things that have been suggested, so therefore it must be something else? Or am I totally wrong here too?

www.headaches.com seem to come close but as usual I am just left hoping and wondering?

Wishing you and yours all the best - Michael

I apologize if anyone feels that I have gone a bit overboard with one or two of the things I have written but all I can say is I am having to live this. I also realize things could be worse - they most likely will be too I expect? I am angry with and hate MYSELF for being this way, it's not fair to me or anyone that has the misfortune to cross my path - especially people that I care for the most.

[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.

[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.

[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

[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