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Migraines and Headaches Community
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Avatar universal

Headache Challenge

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 :)
26 Responses
Avatar universal
MEDICAL PROFESSIONAL
Hi .

After reading your post, I can see that you are very worried about your symptoms.I just have a few questions: What is your typical day like? Do you work in an office or do you travel a lot? Do you do a lot of reading or do you stay up late at night? Do you have someone with you at home? Do you have any family history of allergies or rhinitis?Do you have any tooth or gum problems? Any ear infections?

Headaches may also be due to inflammation of tissues of the face, dental and gum diseases and even muscular pain.They are not necessarily due to a neurologic cause.Try to relax and practice deep breathing exercises everyday.Try placing a cool compress over your head and over your upper back or shoulders to help relieve the pain.It is important to spend some time for yourself or your loved ones at the end of the day.Extreme stress can lead to extreme headaches that are usually relieved by a lot of rest.You have mentioned that physiotherapy helped in relieving your symptoms a little.Have you continued your sessions with your physiotherapist? Also,I suggest that you try to talk to a psychologist or a counsellor  concerning your fears which I believe cause you extreme stress.

Please follow up your MRI results. Good luck and keep me posted.
Avatar universal
Don't worry about long posts, you should see some of mine but what doctor speciality gave you the MRI.  And if no one gave you an analysis of it - how can you be sure it was read?  You have been very proactive so I don't think this is just stress or anything.  What meds and diagnoses have you been given.  What has helped and what has not.  Also, why a t-spine MRI, I get the head one being done, did they do a cervical or is that included in your t-spine scan.  Also, go ask for a copy of all scans - they are your property and if you have them you can get additional opinions without new scans.  More info - just what you wanted to hear.  LOL
Avatar universal
Thanks for your input so far VanessaMD and Lifesaheadache - much appreciated. Hope this is not too much of a long reply again, only trying to help complete the picture. Please read fully because so far I have now given loads of information but would still welcome feedback.

I shall try to answer one or two points as we go. As stated my dentist thinks I have an infection and has scheduled for me to have a tooth removed (number3?). This has had root treatment and never really settled down but... This has only been dragging on about one year since it was filled. Hopefully it may help relieve some of the trouble but not all? We shall see? The problem has been with me since Sept 2004. It started late Aug 2004 when I awoke massively dizzy and room spinning like mad! Went doctors, walked like a drunk for 3 weeks. They said it could be ear infection (70%), neck trouble (29%) of something more sinister (1%). If it was sinister I would be dead before any appointments came through!!! Was offer seasick tablets but coped. After 3 weeks or so it gradually turned into a constant headache which has progressively developed. Over the next few months they put it down to anxiety which I have always disputed for various reasons - some written here. And told go home and take a paracetamol! Eventually was referred to physio which helped somewhat but being on NHS was limited and stopped Aug 2007 after around 6months of one visit per 2-3weeks average. There is obviously a lot more to all this but generally this described my experience - not exactly encouraging. Around December 2005 is when the sore throat feeling started but have been told it's not cancer (goodbye again, still no answers as to what though). Tinnitus is easily changed in pitch and volume by head and mostly jaw movement - have been told it's not TMJ trouble. ("Use a radio or something to mask it thet say"). Tinnitus doctor said if I am coping go home, they only help people that can't cope, once again no light on the subject. When I said about headaches he said see your normal doctor.

As for the MRI scans the person who requested them said the spine one was just to be sure. Not being given the chance to at least discus it with anyone is very demoralizing after all this time I must admit. When I went for the results I was told that they had not had time to look at them properly, make another appointment for two months. In the meantime don't worry because there was only a couple of "incidental" blood vessel items showing up. Am seeing a maxillofascial expert (referred by dentist) in just over a week at the same hospital, I shall ask if he has any ideas? I have a feeling that if I asked for a copy of MRI results for possible future reference I will not have any joy - is it a patient's right in the UK do you know?

I am personally certain that it is not down to stress and anxiety. Have tried all sorts of stuff to counteract that - see my first post, including correct breathing, relaxation, soothing sounds, motivational techniques, anxiety and stress management, visualization, positive thinking, diversion tactics, occupy myself, etc. Have even changed my bed and matress, pillows, etc. Have made various lifestyle changes to try and crack it but with no positive results so far - just ruling things out such as sitting at PC, posture, diet, etc.

I still feel it could be some kind of infection and/or muscular neck type things. I have had a bad neck on and off since around 1990. Despite having some kind of stress problems such as agoraphobia since 1980 I can say with total and complete confidence that stress has NEVER given me a headache in the past. Even when long term relationships have broken down and other bad things such as life throws at you from time to time happen I have NEVER had an headache because of it. I was never a person that had many headaches in general. Also I acknowledge that the bad neck has been a cause of just a few headaches, but never constact to this degree of discomfort. I am not a person that will pop pills until given a specific diagnosis, which has never been given for sure. ("It could be this, it could be that" type of thing, if you get my drift?). I feel I have never really shook off the ear infection and some of the headache is due to permanently correcting or adapting to it still, is this possible or not do you think? I still have giddy lightheaded feelings which the doctor said "eat more salt". Also when I said my weight was difficult to keep up he said "put more butter or sugar in your food, eat fatty things such as fish and chips more often". pretty unusual, eh? Was also told I am getting some of these symptoms because I am thinking about it. I could never dream them up so therefore I say I get the symptoms first!

I have only one loved one - my terrific young daughter from whom I do try too hide most of this. Family and friends are as good as non-existent, never did have a lot of friends but this has damaged even that part of my life. I keep going for my girl. I am a somewhat shy but decent person who is quite sociable given the chance. We regularly meet people and the local social club though. Having said that I know I have become rather withdrawn mainly on the basis of sparing others contact with my ongoing misery. I try to be brave but sometimes it's very hard going.

Have tried hot and cold remedies - found warmth such as shower works best but only for a limited time. This can also lead on to actually feeling worse when the effect wears off. Have regularly done my neck/shoulder exercises - these sometimes ease it a little but occasionally I feel it has flared things up?

One conclusion I reach is that if most of these attempts to fix it do not work it can only be because I am trying to fix "what ain't broke". A bit like trying to cure something you have got with a remedy for something you haven't. Just have not tried the right thing yet, (other than physio which I can not afford privately). Only recently have I turned to research like the Internet and things seem to be leading me to the possibility of craniosacral therapy, myofascial pain, trigger point therapy type of things. But once again these will not be cheap and most likely not on the NHS?

Well that's quite a lot to be going on with - hope nobody minds but I have been bottling this lot up for years now. It helps to get some of it off your chest. Thanks for reading. feel free to respond.

All the best again - Michael :-)
Avatar universal
You have been through so much and I am personally very proud of you for doing all of this knowing it is in the best interest of your child.  Didn't know you were in the UK.  Your post is the poster child for why socialized medicine doesn't work - any doctor that says "listen to the radio" to cover up tinnitus is not on the tops of my list.  And wait two months for them to read an MRI is just disgusting, and I am sorry they are treating you this way because it is not fair.  I'm also sorry about the socialized med comment if you truly believe in it.  

Based from everything I read, here is my two cents - I'm not a doc and not up on the UK system but here is what I would do.  The best option is to get an appointment with a good nuerologist

BUT, how long would that take to get?  Remember, no one knows the patient better than the patient.  And since you are working in such a difficult medical environment, I would get an appt with whoever you can get in fast with.  This will probably be regular general practioner, I don't know what they call them there.  We know for a fact that you an Anxiety disorder w/Agoraphobia.  Are you currently being treated for that.  Of course it is up to the doctor, but I would push for a prescription of Prozac, it is a Selective Serotonin Reuptake Inhibitor which is the "class" of drug.  It is one with the least amount of side effects and is used for anxiety/agor.  It additionally works on Migraines and Pain management  The regular GP can prescribe this and it may work on a lot of your symptoms.  Actually, Paxil another SSRI has been used for your type of anxiety with great results plus pain relief but has serious weight gain in some people.  You may want to try that one instead.  Also, let them give you something for pain if they will.  You deserve pain relief until this is figured out.  Now, if those meds don't help then go back and ask for Cymbalta that is an SNRI.  Close but works on a diffenent neurotransmitter.  Remember, it may take longer than just a few days for these to kick in.

This is just a first line approach, and like I said I'm not a doc.  Also, before you go to the doc you need to take a piece of paper, typed if possible but if not its OK.  Make columns, label sinus.  Then type out symptom, diagnosis, and treatment columns and document each.  Tell the doctor you want to work on Anxiety and headache pain first.  I think you have tried so much that the treating doctor, called the rendering doctor here, is getting overwhelmed with info.

Also, whoever did the MRI's, go back and tell them you need copies for your doctors because you have sinus doctors, psych doctors, general docs.  Also, ask them for a copy of the radiology report.  Let them tell you they are not allowed to give it to you - I doubt if they can keep it from you.  Also, you are going through so much and are alone so write back often and lets see how it is going?  Does this sound like a workable start?  If not, lets come up with something else together.  You're not alone, I promise.
Avatar universal
MEDICAL PROFESSIONAL
Hi,

Let me focus on your dizziness.Has this recurred since September of 2004? Is your sense of hearing affected? Diseases of the inner ear may lead to problems of balance and positioning.However, a more central cause involving the cerebellum ( part of brain involved in gross and voluntary movements) has to be ruled out. You have mentioned of a spine MRI being done and some "vascular items" noted. I suggest you ask your spine doctor to elaborate on this. Vascular problems may lead to deficient blood flow which may cause muscle pain or dizziness.

Follow uo with your dentist. Any family history of  cardiac or vascular disease in the family?

Good Luck! Enjoy life!
Avatar universal
Thanks again. This is not meant to be a long and boring reply but at the moment I feel to be fairly comprehensive will help? At first (Aug2004) the dizziness was extreme and made me feel very sick, but wasn't. Next 3 weeks and it began to ease but headache developed. Lying down or sudden head movement sent me extra dizzy for a while. Even just looking in different directions or getting off bed could trigger it, I became accustomed to it. After about 4 weeks just the headache and a groggy kind of feeling remained. Already had minor tinnitus but this has become much worse over the past three years. My hearing is a little low on the bass tones according to ear specialist but nowhere near requiring hearing aid. It seems OK to me. In fact I reckon I have pretty good hearing but when there are a lot of different sounds going on they can become somewhat "mixed" and hard to pick out exactly what a person says? I still often feel this way but the ear specialist said my brain adapts. Occasionally it makes me feel sick but I am not sure if that is just a few nerves or not. Generally I am very tired and don't feel well though. Just keep plodding on. I have often asked why my head, neck & face has gradually got to the point it swells up, goes very red easily and quickly when I bend over and feels like it could burst? It all drains away quickly on straighteneing up. This started gently around 12-15 months ago and is getting worse. ONLY the physio said that blood vessels could be getting "trapped" by my posture, but this is now also monitored and corrected by myself as much as possible with no apparent benefit. Chewing makes my temples swell, NOBODY can say why, these go down after a few minutes.

When I told the doctor I was feeling kind of giddy and off balance, (like I would suddenly fall), he said "it's because I am concentrating on walking"! I do not agree. Already there were hints from the doctor that this was down to stress or anxiety. Because I have some history regarding this matter AND the way it all started I AM SURE IT IS NOT DOWN TO ANXIETY but only the physio and accupuncturist believe me. (See previous posts). I have been trying to convince and brainwash myself with various methods there is nothing wrong, but there blatantly is. Thanks once again for at least reading, it is appreciated because yet again this morning my head and neck are terrible. Why is it worse when I have spent a night in bed, any idea? Is it because I have been lying down and causing prolonged blood pressure in my head, or because my neck has been strained despite my best efforts to be comfortable? My eyes, jaws, temples, nose all ache worse in morning. It is like having a massive hangover every day, but without all the drink. BTW exercise generally does not make things much worse. In fact up until about a year ago exercise actually made things improve a bit. These types of words and queries seem to be almost instantly dismissed by the pro's as being "imaginary", "in my head", "can not be", "it's the way I am" things. Very demoralizing largley because even when I ask specific things they seem to skirt around it without explanation. One doctor even said I have these things because I am "obsessed" by it. The fact is I have it and am concerned - is this wrong? I have seen a doctor about this on average only once every 4-5 MONTHS and not for over 1 year now, other than MRI and dentist stuff. Does this sound like too often considering the misery and discomfort I suffer? It is difficult to make anyone believe the way it is, mainly because I look OK.

Hoping you can digest all this and are not getting bored? You do seem to know what you are saying and asking of me. Are you actually a doctor or do you simply have a great interest in this kind of thing because of personal reasons? Thanks again - Michael
Avatar universal
Thanks for your comments too. It is refreshing to have some kind of support.

Maybe some of what I say may sound "over the top" but please believe me when I say it isn't.
I am living this stuff and sometimes get so low I wish I wasn't - but it's not my nature to give up.
Apart from that my daughter needs me - I LOVE HER TOO MUCH TO GIVE UP - she deserves more than to have a Dad suffering like this - she is VERY good!

I shall now answer one or two specific points you made - if that's OK?

I have asked on several occasions "could I please see a specialist in headaches" (neurologist is that?). Have had virtually no response to the specific request except "let's concentrate on getting rid of the symtoms" (i.e. take the drugs to mask it). Although I did eventually get MRI scan for what it was worth so far. Can not afford to go private.

QUOTE: "Remember, no one knows the patient better than the patient."
I agree completely My past is used to dismiss what I say, BUT I KNOW WHAT IS HAPPENING! (SCREAM) and making them believe is a hard job. My GP said if I wanted it would be OK to see him every 3-4 months but when I did it was just a case of checking blood pressure (OK) and saying this was my inate character, throat is somewhat red and slightly inflamed (as always!), cheerio. Seems pointless to me, still not getting many questions answered.

Now to the drugs - I have had experience of these many years (1980-1990). Made me dozy and addicted. One good doctor weaned me off them, best thing he could have done. My agoraphobia is not good but have coped with it for years and am well experienced on that front - hence my knowledge of knowing EXACTLY what and why I am saying how things truly are. Now on to modern drugs - while it is possible to cope without I shall. Couple of reasons, past history, knowing I can manage, have had BAD side effects in the past, they would not be targeted in my opinion - just for some relief, research has led me to believe they do not work very well, they often lead to more problems. I am not against medication completely but it MUST be targeted and safe. I want to get at the ROOT CAUSE and kick it into touch bigtime. But even if I did or could get hold of MRI scan report who would I show it to? Not sure of what I could do with it?

I do appreciate ideas so please keep them coming. Thanks also for your invite to write again, it makes a welcome change to be encouraged. I am basically alone with this and admit it - honesty is actually one of my strong points - even though at times some people seem to frown upon it! Just getting a load of this out of my system seems to help. Maybe after a while it will become so documented I could cut, paste, print it out and pass it on to help either myself or maybe others?

That's it for now, thanks again - Michael
Avatar universal
Just an afterthought in case it's worth mentioning?

I have even tried balance and eye exercises but generally speaking when required these seem to be OK I'm glad to say. Also have had my eyes checked once per year, next one due this month, and optician has found nothing wrong at all so far - but I am short-sighted and need glasses to drive or read things at distance. Have tried various tests with and without glasses to eliminate anything vision related.

That's all for now - Michael :-)
Avatar universal
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
Avatar universal
MEDICAL PROFESSIONAL
Hi,

I hope you feel better waking up this morning.

There are certain conditions that may lead to dizziness and I have mentioned some in my previous post ie vascular and cardiac problems,anxiety states.However,there appears to be  a fine line between dizziness and vertigo and some people interchange the terminologies.True vertigo usually comes in attacks and may be either brief or prolonged ( lasting for hours).Vertigo may be associated with pallor,perspiration or palpitations.Vertigo can be very frightening. A condition called benign positional vertigo (BPV) is associated with head positions and sudden shift in movements may cause an attack.However, hearing loss and tinnitus are not usually seen with BPV.A decrease in hearing , feeling of head or ear fullness and tinnitus is a triad associated with Meniere's disease. You seem to fit the profile.

Has your doctor discussed the possibility of Meniere's disease  with you?

Good luck!
Avatar universal
Hi again, (including MORE omitted description)

sorry to say but over the past few days I am having an extra bad time and am totally fed up.
Am often wondering what's the point and will I ever get to the root cause before it's too late?

I have looked to see where you are coming from above and could be taken into consideration but if Meniere's then that part of it seems mild right now and to me does not explain everything else? My doctor has not mentioned any of the above. I did once have a blood test to rule out the light-head on getting up was due to some kind of hormone problem (negative) - it was after this he suggested more salt. He aslo confirmed that my blood pressure dropped a little on rising but said not to worry.

The sudden shifting of head position does not do much these days but I do go rather dizzy quite easily - e.g. if I attempt a couple of spins on a roundabout or swing with my daughter, or spin around quickly on the spot even if only one full turn. Did I mention about 7 months ago the doctor recommended having ears syringed? This I did with no apparent or recognizable benefit - all was the same afterwards.

Forgot to also mention that most of the time I have "laughing tabs" (i.e. the feeling behind the bottom jaw under the ears as though having just bit on a lemon), this just goes on and on to the point it then just aches and pains also! It seems like my whole head is in turmoil. Even my sense of smell has risen sharply and I can often "taste" the smell with my throat? My throat, on top of the sensation of being on the edge of a sore throat virtually constantly feels dry when I swallow - even immediately after having had a drink? Throat often feels so rough through the night it wakes me up - I am sure I do not normally sleep with mouth open though. My neck ache, especially at base of skull and sides of neck hardly ever stop aching - despite all the relaxation, posture and care that I have been told to apply? WHY? It's all driving me crazy! And of course I am alone in this and trying my best to bottle it all up for various reasons.

Right now all I want is to stop ofr get rid of the "face full of blood" or "fit to burst" when bendind over feeling. It's got to the point that even bending head forward (or lying down) it feels like my face (cheeks mainly) are just heavy and hanging down? Even shaving (even new razor) feels like I am using a blunt one, i.e. pulling and highlighting how tender my deep facial tissues are?

Am now going for a good walk round the local nature reserve - cold but sunny.

Thanks again for you input all the best - Michael :-)
Avatar universal
MEDICAL PROFESSIONAL
Hi Michael,

It seems like you have gone through a lot. I commend you though for being proactive about this.
At this point, I suggest you stick to the therapy/management that can give you the most relief. You have mentioned that most tests returned normal including specific maneuvers that ruled out inner ear problems. However it is interesting to note that some more common diseases like the common migraine may actually differ in presentation from one person to another.Some textbook definition of diseases do not necessarily apply in clinical situations.There are some presentation that may exactly mimic a textbook case but there are what physicians call a medical mystery or simply a challenging case.

Let's just hope for the best.

Good Luck!

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