End of October 2014 update

Nothing has changed since my last update I'm still having all symptoms. I have the date booked for my private MRA & MRV on the 28th November.  I'm looking forward to having it done but also worried nothing is found.  I can't afford any more testing after this and I will have to give up and live my life the way it is at the moment, full of pain and exhaustion!  I haven't managed to find another job and to be honest I don't think I could cope with a job.  How would I explain to a new employer I hear noises in my head and have a headache that I have had for two years and doctor's haven't been able to diagnose me.










Whirring Wanderer

Photo time!

 

I have attached a photo to show where I have the headache, this is the same side of my pulsatile tinnitus. ( I believe this is what I have, its not just normal tinnitus) It's very hard to describe the headache without showing where exactly it is.  Apologies for the doodle on my phone editing, this is the best I could do! The areas are approximate to give an idea. The red outline is predominantly the area where there is a constant headache and pressure and also where I experience my newer symptom of sound sensitivity.  The green cross is where I have a pressure sensation that is horrendous, its nothing I have ever experienced before all my symptoms started. On occasions I feel as if I have a deep vibrating in my neck but I can't feel anything when I touch and palpate my neck its much further in than that. The orange highlighted area on top of my head is also sore with a pressure and to touch.  All symptoms are left sided. If you have read my updates you will notice I have many more symptoms but these are the main ones.

Whirring Wanderer

September 2014 Update

Unfortunately the referral didn't go through,  my doctor surgery called to say there was no consultant of that name and could I give another name if I still wished to be referred.  I called the Spire Hospital and apparently I had chosen a doctor who had not worked there in some time and they couldn't give me access to that type of consultant however they emailed later in the day to say I could see the ENT specialist for tinnitus re-training for a package price of £5000.  I sent a reply email explaining I used the term pulsatile tinnitus and not tinnitus.  I have decided to use the pulsatile tinnitus term instead of tinnitus because anyone I speak with assumes its just ringing I hear and nothing can be done.  I constantly remind everyone that although I have developed buzzing tinnitus my so called main tinnitus does not buzz or ring it wooshes and whirrs!!! 



I searched compulsively on the internet looking for a Neuroradiologist but couldn't find one I could get access to.  In desperation I contacted the British Society of Neuroradiologists for doctor's names in Scotland that I could approach but unfortunately the email was bleak and stated they could not give out private information and suggested to go through my GP, little did they know I had visited my GP numerous times and they would no longer assist me on trying to find an answer to my symptoms. On the 22nd August I found a neurologist called Dr Tyagi who is a headache specialist so I quickly arranged an appointment for the following week on the 28th August.  I called my GP surgery and gave them the new doctor's name to be referred to and asked that a referral be typed up to take with me.  I collected the referral which I have to say was very poor and said LEFT SIDED FACIAL PAIN (the diagnosis that the private ENT Mr Marshall sent me with his bill) no other symptoms were noted and nothing else written on it, this proved my original thoughts that Dr Stevenson should have written the referral whilst I was at my last appointment with him. My appointment came round and my husband and I drove just under an hour to the appointment.  I handed over my two pages of typed symptoms.  (See bottom of the page for the list)


Dr Tyagi listened to everything I had to say and he used the word "pulsatile" to describe the sound I was hearing in my head.  He did a quick examination, looked at my eyes and listened to my head with a stethoscope, he said he could not hear anything.  To be honest no one would of heard anything in that room as there were several noises including a loud buzzing ceiling light. The consultant said the cause of the symptoms could be one of three options.  The first thing he said was an AVM or AVF he mentioned imaging would be needed but went on to say this was highly unlikely and sort of ruled it out, then he moved on to say about a rare type of migraine but he ruled that out after discussing it as I did not have sickness/nausea.  He then said there was a chance it could be nerve damage of the Occipital nerve and asked me some questions which my answers were no, my symptoms clearly to me did not fit the pattern he was suggesting.  Dr T suggested I take Pregabalin and if there was any nerve issues that it would help, he also stated he could refer me back to the pain clinic for a nerve block injection.  He wrote a letter requesting my doctor prescribe Pregablin and gave it to me to give to my doctor.  He said he would be happy to see me through the NHS and keep me under clinical review.  He said on leaving he had not met anyone with such symptoms and it was rare what I was experiencing.



On Monday morning of the 1st September I was at work and asked a colleague to fax my prescription request letter to my GP surgery as I had not used a fax machine in years.  In the afternoon at 3.05pm my Manager asked for a word in the office next door, I thought it was about my new roles within the company that were given to me on Wednesday 27th August.  On the Wednesday there had been a meeting between myself, my manager, the office manager from the office downstairs and also the repulsive woman I worked beside who has the title of Business Development Manager but really should have had the title passive aggressive bully.  I had the misfortune of working beside her for eighteen months and she was a vile woman towards me, I tried my best to get along with her.  She was furious that the previous Wednesday I had been given new roles within the company, very minor roles but they were greatly appreciated by me.  The word in the office next door was my marching order, I was told there was no longer a role within the company for me and that I was to leave that day and not come back, apparently the company was struggling financially and it was not viable to keep me on.  Between me finishing work on the Wednesday and returning on the Monday something had gone wrong, or had it?  Was it the bully? was it my prescription? or was it a combination of both?  I was too physically and mentally exhausted to argue, I deleted all the files I had worked on for the past eighteen months, cleared my drawer and left.  Three weeks later a new job was advertised by the company with a new job title, so much for the company struggling financially.  Again I was ill to do anything about it.




I started the pregabalin on the 4th September and apart from it making me extremely tired and spaced out it has done nothing for the headache, ear pain/pressure and the noise in my head.  I received a copy of the letter Dr Tyagi sent to my GP stating "I am unable to explain her noises in her head and the sound but the pulsatile nature of it may suggest that this may be related to her headache syndrome"  "I think the pain symptoms are best attributed to occipital neuropathy/neuralgia" 

A few days later Dr T. sent another letter to say he had reviewed my Nhs MRI scan and it was completely normal which I am very pleased about.  I just keep wondering what is causing all these debilitating symptoms and nothing is being found.  I still have a niggling that something is being missed!



I emailed Dr T the other evening on the 29th Sept explaining the pregabalin was doing nothing to help me and I also stated that I have developed a new symptom over the last few weeks in which my head and ear on the left side is very sensitive to certain sounds and I get a shock feeling and pain at the sounds of a car passing, cutlery clanging and certain voices.  I was a bit worried in case this was a side effect of the pregabalin or it could have developed before I started taking it and I have not noticed, I honestly don't know anymore. Dr T. responded this morning suggesting I take Amitriptyline or Duloxetine and should these not help arrange the nerve block.  I am rather upset now because I don't want to be abusing my body with multiple prescription drugs when I don't know what is causing my symptoms.  Obviously I am expected to just keep quiet and take the prescription until December when my next appointment is.  The drug he recommended Duloxetine is for people with anxiety and depression, I have neither although by doctors not helping me and by not investigating my symptoms it will end up causing me to have anxiety.  It seems to me that doctors automatically assume patients who make contact multiple times with their doctor over a medical problem are assigned a label of having anxiety and depression.  Do doctors not realise I went to them with a rhythmic baby ultrasound noise in my head and a constant headache, surely that can not be normal for a 30yr old woman, I never went to them about feeling low and worrying. I emailed Dr T. back asking him if he can forward me on to another consultant who can carry out imaging starting with an Mra & Mrv because the drug he recommended is not for me as I do not have anxiety and the bottom line is that I am still suffering with this dreadful headache, neck pressure, ear pressure and noise in my head. He wrote back saying he would organise the scan.  I've had enough battling with the Nhs and trying to get doctors to listen and take my symptoms seriously but I should not need to be paying private and researching all my symptoms, surely doctors should be looking into my symptoms.  Maybe NHS GP's do not research patients symptoms anymore.

I have all these questions running through my mind.

Why is no one interested in helping me?

What is causing the pulsating tinnitus and headache and the other array of symptoms?

Why would a fit and otherwise healthy 30 year old get pulsatile tinnitus and headache after overhead painting?

Why does every doctor try and separate all the symptoms that started around the same time.

Why can't I exercise? Why do I have pressure in my neck and head when I try to walk longer distances.

Why when my heart rate rises does my neck feel a deep vibrating and a lot of pressure, this also happens when I bend forward.

Below is what I had typed and gave to Dr Tyagi at the appointment.

Symptoms

Sitting on the sofa one evening on 24^th October 2012 I became aware of a noise, I turned the television off and said to my husband I could hear a pulsing noise. I went to bed but couldn't sleep the noise was coming from my left ear and there was a deep pressure feeling, I eventually drifted off around 3am. In the morning I had a headache deep on the left side which was on the top of my head and above my ear. Later in the day I felt an ache pressure feeling in my neck below my ear lobe. I had a doctor's appointment a few weeks away that I had previously arranged and I would mention it then if it hadn't gone away. In the mean time I realised the noise was like my pre natal scans it was a baby's ultrasound noise, it became more noticeable and loud that I tried to convince my husband he could hear it by putting his ear to my head but he heard nothing. I had no idea what it was and still don't.

• I have a constant whirring noise from within my head on the left side, this was originally a baby ultrasound noise woosh woosh woosh or whoaw whoaw whoaw sound that quietened down to a distant bass drum after some months then settled at a whirr that is a constant rhythm like a turbulence sound.
• A few days after the baby ultrasound noise started I also noticed a low pitch electrical noise, I thought I had left the tv on standby or my mobile phone charging but soon realised the noise was where ever I was.
• The headache is constant and has never left since 2012, I describe it as a dull constant ache and at times I would say its a pressure headache, it is above the ear and diagonally above the ear towards the back of the head and at times slightly on the top but still all left sided, I can draw a line round where the headache stays and its all left sided. I realised one day leaning my head on my hand caused the electrical noise to get louder. Another thing I realised last year in 2013 is when the headache feels more of a pressure I can put weight on the top of my head with both my hands and the pressure slightly goes and the electrical sound is quieter. As soon as I release the weight of my hands the pressure and electrical noise returns. When my headache is more pressurised the whirr noise seems louder. My headache is very noticeable first thing in the morning when standing its as if my head is trying to adjust to its new position after laying down all night. I also have pressure in the temple area when bending forward.
• I have pressure and a strange ache in my neck on my left side below the ear lobe, this is not sore to press or touch as it is deep within my neck, if I bend forward to pick anything up from the floor the pressure in my neck gets really bad and I get a loud woosh sound for a few seconds however this sound seems different to my original baby ultrasound noise, I call it my roar sound. This happens first thing in the morning when getting out of bed, bending over and walking up the stairs and occasionally getting up from sitting to standing. I try and fool it by getting out of bed really slowly by rolling on to my side, sitting up slowly and standing slowly but the roar appears. The pressure and ache in my neck doesn't bother me too much and comes and goes depending what I'm doing. I would say I more notice it when I'm moving around more, walking home from work and my heart rate is higher. The pressure in my neck also returns when I first lie down then it settles down.
• I have pressure and a deep ache felt inside the left ear behind the ear drum, feels as if something is pushing from the inside out, the ear creaks and pops constantly through out the day. I feel my ear pressure is worse when the headache is more pressurised.
• I developed a low pitch buzzing noise in my right ear months after initial symptoms but this sound is different to the left ear electrical noise and resembles all different sounds like an alarm, mosquito’s and ringing, originally these sounds would wake me but they don't bother me now and I'm used to them.
• I developed pressure and a dull ache behind my left eye around 7 months after initial symptoms started, my eye creaks on its own and squelches when touched, I noticed this originally when applying make-up, this is not an every day thing but when my headache is worse then my eye creaks. Around the same time I noticed a blur from my left eye that resembles haze lines, a water blotch and some times a spiders web it mainly happens when I'm walking.
  I occasionally have a pressure on the left side of my nose at the bridge more noticeable when walking and on an odd occasion a strange sensation over my cheek bone but only lasts for seconds.

Till next time, thanks for reading.

Whirring Wanderer

August 2014 Update

I received a letter the following week after my pain clinic appointment from Dr Meiklejohn. The letter states "I spoke to the Consultant Radiologist today who reported your MRI scan looking specifically at your sinuses and could not identify any abnormality, he also could not identify any other abnormality in the scan". 

I now have to believe what is written on the letter in black and white, I have nothing wrong with any sinus or surrounding area which is good, in fact very good as that rules out that there is nothing wrong with my brain which is very positive but it has now left me searching for another answer to my symptoms.  These are real symptoms that I experience, I doubt myself all the time but I am sure its not all in my head!!!  Is it my veins? is it my arteries? I honestly don't know!  Back to Dr Google, I will keep searching.

Last week was not a good week, my headache, whirring noise and immense pressure was flooring me and I ended up off work for two days lying flat in my bed and sleeping constantly as I was so exhausted.  I done some research and found out about a doctor who is a Consultant Neuroradiologist and visited my doctor Dr Stevenson on 31st July for a referral. I felt Dr St. was a little on the defensive and to be honest was not interested that I was off work for two days and had to lie in bed, he offered nothing but agreed he would do the referral.  I explained the MRI was apparently reviewed and nothing was wrong with my sinuses or surrounding areas therefor I wanted someone who could potentially be able to refer me to someone who could look at the veins and arteries in my head to rule anything out, he sat nodding his head and said to give the details to the receptionist and he would arrange it. I had the details to give him but he was hesitant and asked again that I give the details to the front desk. I wanted him to write the referral whilst I was there like the previous occasion so that I knew exactly what was in the notes for referral. He also said he would do his utmost so that the referral got to the consultant as he was aware my previous two referral's to the private ENT were lost.  At least he admitted that.  He asked if I wanted the Consultant to have a copy of all my notes including communications with what each doctor has reported, I admit I was a bit wary of this considering at previous appointments doctors did not write anything down about my symptoms nor did they take me seriously. I did eventually agree and said I would also take my own list of symptoms and that was the end of my appointment.  I gave reception the details of the consultant and she brought them up on the screen and said it would be done as soon as possible.

I am now waiting on an appointment coming through from the Consultant Neuroradiologist however I have emailed and had no response and I have telephoned the private secretary and it rings out. 

Whirring Wanderer

Pain Clinic 15th July 2014

I had another pain clinic appointment two days ago on 15th July that I was unsure of attending because I did not think I would gain anything by going but I'm glad that I did go that morning.  Dr Meiklejohn felt there were still some issues needing cleared up before he could start treating me after I told him about my recent disastrous ENT appointment.  I said to Dr M. I felt like a ping pong ball and I was getting no where. Dr M. said he would personally call the radiographer who read my MRI to go over it with a fine toothcomb and then report back to me within a few days and if he personally wasn't happy with the reading of the MRI he would arrange another one set up to look at certain areas.  For the first time I felt hopeful and in hearing this I asked if it would be possible to ask the radiologist to look specifically at the Sphenoid Sinus and the Pituitary Gland as I know they can cause problems.  My OGD Obsessive Googling Disorder had led me to looking at parts of the head that causes headaches.  Dr M. said this would not be a problem and pass on my information.


Whirring Wanderer

Alcohol is a No No

Since my symptoms started in Oct 2012 I have really struggled to have a sociable drink amongst friends and family.  When I do the noises and pressure in my head heightens and this happens with just two drinks.  I am not a big drinker anyway but I'd like to have more than two, I'm only 32 and should be allowed to enjoy myself once in a while.  Before my symptoms started I could enjoy a bottle of wine on a rare night out and have no side effects, I just can't do that now.  Last night I had two small vodkas and this morning I have a raging headache worse than my normal one that has been with me all this time, still left sided.  The whirring in my head is very loud and the pressure is making me feel off balance, it sounds as if I have a turbulent river in my head like there's a dam that the water can't get through .



All for now
Whirring Wanderer

June 2014 Update ENT appointment

I haven't managed to see my GP since my last post, routine appointments at my doctor's surgery are generally afternoons to see Dr Stevenson and I can only manage a Friday afternoon due to work and family.  However I have visited the dentist on Friday 23rd May and explained my symptoms and paid to have my teeth x-rayed with no abnormality found on left side so I know my teeth are not causing my symptoms.

I also had my ENT appointment on Tues 27th May.  I was expecting to see the same doctor Miss Shanks whom I seen last year as this was the named doctor on my appointment letter but she was no where to be seen.  I was happy to see another new doctor, maybe they would listen and try and find out the cause. The doctor was called Dr Mir.  My first impressions of him were very good, he introduced himself and asked why I was there so I explained I had been suffering from rhythmic tinnitus which is a whirring noise and headache (originally a wooshing noise) along with headache ear/neck pain and pressure since October 2012 and that more symptoms had developed including blur in my eye and veering to the left.  I handed him the list of symptoms I had typed up and printed out, he read the first 3 or 4 and sat it down.  He looked at me and said "lets start at the beginning I will look at you as a brand new patient, tell me how this all started"  I thought to myself, finally someone is going to take time and listen fully so I steadily explained that night in October 2012 with the wooshing sound then the headache the next morning, followed by neck pain and pressure, he seemed interested.  He decided to examine me and checked both ears, he found no problem, he had a glance up my nose and found no problem, he looked at the back of my throat and said he could see lymphatic tissue.  He asked if I had any throat infections which I haven't had recently but I explained I had one in December 2013 in which I had to have an antibiotic.  Dr Mir decided to use a camera to look up my nose and at the back of my throat, this wasn't pleasant but at least it was another step. The camera went up my right nostril very easily and I could feel the camera at the back of my throat in no time, next it was the left nostril and (Arghhhhhhhh) this was painful it seemed to get stuck and I let out a yelp eventually he pulled it back out and had another go manoeuvring it slowly and eventually I could feel it had reached the back of my throat.  Afterwards he said he noticed that there were three minor things that he had found that were not causing my symptoms but he said "I am only telling you just in case someone else further down the line tells you the same things, "1. you have adenoid tissue and 2. tonsil tissue on the left side, I am unsure if they have grown back or whether they were properly removed in the first instance and 3. you have a severe deviated septum leaning toward the left"  This might explain the mucous drainage I have on the left side occasionally.

I was slightly puzzled that the two previous ENT doctors had not mentioned anything about the leftover tissue as they had examined my throat, it seems some doctors will mention what they find and others won't.  Dr Mir continued to ask if I had my hearing checked recently so I explained it was tested last year but I felt my hearing was now becoming affected yet he decided not to test my hearing again as he felt it would be fine. 

The next thing Dr Mir suggests is that he will refer me back to the pain clinic, I was nearly in tears at this point and for the first time felt extremely angry.  I asked some questions about my symptoms stating the only reason I ask is that I have a huge amount of symptoms and I'm really suffering and can't exercise, the headache really wears me down as does the whirring noise. What happened next left me in shock.  He explained as a doctor he is the professional and he is learning all the time and continues to learn but it is up to the professionals and they decide if I have a good quality of life or not??? He continued "as a doctor when I go to see a doctor for a medical issue I am not allowed to question the doctor and I am not allowed to see what a doctor writes about me" did you know that? are your surprised by that, you as a patient you would think that as a doctor I am allowed to know everything that is on my notes, well I'm not".  I sat stunned with glazed eyes and felt as if I was back at primary school. I looked around and noticed the nurse was out the room.  Did I really hear an ENT doctor have a rant because I asked a question. When the nurse returned I plucked up some courage, looked him in the eye and said "there is something wrong with me, I am not suffering all these symptoms for nothing" and he said, "I agree there is probably something wrong but we just can't pin it down and the best plan is to refer you back to the pain clinic where they will sort some pain killer out and that will make you feel a whole lot better, you look a very positive person and will cope just fine, you might start to feel better and be able to exercise when you have painkillers"  I felt he was patronising me.  The appointment finished, it was a complete waste of time.  I still had the severe headache, ear pressure, neck pressure, blurring in my eye and my friends whoosh and whirr, I felt as if I was back at the start in October 2012.





Whirring Wanderer

Pain Clinic Appointment April 2014

I had my pain clinic appointment this week.  The doctor was Dr Boyd Meiklejohn, this was my first time meeting him.  He listened carefully to my symptoms however the referral from my GP Dr Stevenson was very basic and this was noted by the pain clinic doctor.  I explained how I was really struggling and was exhausted due to the constant pain and noise in my head, I told him how it all started with a baby ultrasound noise in my head/ear and the one thing that I had enjoyed all through my life was now non existent since all my symptoms started, I explained I could no longer exercise due the pressure in my head.  The doctor explained he could not treat me as he believes my head is not screaming pain for no reason and along with all the other symptoms more tests were needed to try and establish a diagnosis and then we could move forward with some treatment.  His suggestion is to attend the ENT appointment I have for May and then see what is suggested and then go back to him.  Before I left I explained I had visited the ENT last year and was told it was a pulled muscle and I also mentioned I had recently paid for a private ENT appointment, he said I should not be going down the route of paying for treatment as all the private doctors work in our NHS system.


All I want is to wake up one morning to the sound of silence with no headache/neckache and pressure. I can't live the rest of my life in this condition I feel I don't have much quality of life anymore, the pain I suffer is extreme and I have tried my hardest to forget it but it seeps through every minute of every day.  Doctor's do not seem interested that I have a severe headache they seem more focused on my ear.

I can't clean and tidy my home the way I used to, as soon as I exert myself and move my head and bend over to pick things up the pressure in my head and neck is extreme.

I am constantly exhausted, I could sleep during the day but obviously I can't, I am so mentally and physically drained that I lie on the living room floor after work, then I just manage to make the tea but I can't do anything else in the evening, I am completely floored, my head feels too heavy for my body.

My relationship with Mr Wanderer is suffering, I am sure he see's me as a hypochondriac because I have a constant headache but what I am suffering is a whole lot more than that.  I am slowly loosing myself, I am not my usual bubbly, upbeat self. I don't want to meet up with friends and family and I hate explaining to people I hear a sound in my head. I sometimes ask myself if I am imagining it all!

I am exhausted at work and loose concentration easily due to the pain and pressure, work takes my mind off the symptoms for a tiny amount of the day but eventually creep back through where I need to lay my head on my desk.



I can no longer concentrate on the hobbies that I love, no more crafts, card making and researching history its just too much of a struggle and the headache becomes unbearable.

I really enjoyed walking for 10 miles three times a week. Its 2 miles from my work to home and I am all over the place I keep staggering and veering to the left.  I can't jog, I can't do aerobic exercises I have tried numerous times and failed miserably because the pain and pressure is intense not to mention the sound in my head becomes louder and quicker.

My children are the ones who are suffering most, they don't have their normal fun loving mum who dances around the living room, who sings silly songs making the tea, who chases them up the stairs, who wants to take them shopping for new clothes, who supports them at their football, dancing and athletics, that is all almost gone, I am helpless yet I still try my hardest to do what I can.  Its a battle because my mind tells me I can do all of these things but my body tells me differently.

I know I am having a bit of a moan aren't I but some of the above things I have told doctor's at appointments but it doesn't seem to concern them.



Thanks for reading

Whirring Wanderer

Symptoms update! April 2014

I thought I would give an in depth list of my symptoms that I am suffering from at the moment.  I am listing everything I experience and I understand I may just be a little bit more aware of things going on in my body than before but I am listing in case anyone has anything similar. I have now been suffering with a headache and tinnitus for 18 months.  I do believe I possibly have pulsatile tinnitus but I can't say in truth that I absolutely do have it because Dr Dosumu has said I do not have it.  I have a pain clinic appointment next week and I have also received an appointment next month to go back to ENT at the local hospital.

Symptoms

• I have a constant whirring noise from within my head on the left side (remember this was originally my woosh noise that sounded like a baby ultrasound that quietened down to a whirr) I find the whirr noise very strange it resembles to me like a turbulence sound or very similar to a distant motorbike sitting out in the street, maybe even an old fridge burring away in the background
• As well as the whirring I have a constant low pitch electrical noise that I hear from the left side of my head(I refer to it as an old tv on standby)
• I have a constant dull headache left sided above the ear and diagonally above the ear towards the back of the head, I can press the area where it is sore and a loud buzzing noise is heard
• I have an ache & pressure feeling on the left temple area and this worsens when I bend forward, this is a newer symptom than the rest
• I have a dull constant headache on top of the head but still on left side, at times when I can't stand the headache and pressure I put weight on the top of my head with both my hands and I can hear better as the electrical and buzzing sounds are not so loud and the pressure is much less, as soon as I release the weight on my head the electrical/buzzing noise gets louder and the pressure returns
• I have pressure and a strange ache in my neck on my left side below the ear lobe, this is not sore to press or touch as it is deep within the neck, if I bend forward to pick anything up from the floor the pressure in my neck gets really bad and I get a loud heartbeat sound  (woosh woosh woosh)
• I have pressure and a deep ache felt inside the left ear behind the ear drum, feels as if something is pushing from the inside out, the ear creaks and pops and at times I have to pop them myself to relieve the pressure feeling 
• I developed pressure and a dull ache behind my left eye a few months after initial symptoms started, my eye creaks and squelches at times when touched, I noticed this originally when applying make-up. 
• I see haze lines and blurring from left eye, it can be lines similar to sun rays, water blotches and at times a spiders web, it becomes worse when I walk any distance but I mainly notice it looking at a plain background like the sky or a road, or a plain wall
• I occasionally have a pressure ache at the left side of the bridge of my nose at times specially when I'm walking and on an odd occasion a strange sensation over my cheek bone but only lasts for seconds 
• I experience a roar sensation every morning when standing as soon as I get out of bed I can hear it very clearly, the sensation seems as if its deep in my neck going into my head, it stops after a few seconds and is very similar to the baby ultrasound noise I hear when I bend forward or possibly sounds like a distant bass drum 
• When lying down in my bed at night it takes a while for my head to adjust and by this I mean my head hurts really bad on the left side but if I turn my head to lie on the right side the left side is just as sore it is as if my head doesn't like me to lie down and takes a while to adjust
• When I open my eyes in the morning and I move my head the pain on the left side is at its worst then it adjusts to a duller ache after I am up and about after my roar sensation

As you can see I have a fair amount of symptoms that I have tried my best to describe. Every doctor I have seen tries to separate the symptoms.  I was at the time still only 30 yrs old when the symptoms started but NO doctor seems concerned.  I have never listened to loud music nor have I ever used ear phones to listen to music so I know I haven't damaged my ears to cause tinnitus.  I did however paint my ceiling around a week before my symptoms started but three doctors told me to dismiss this as a coincidence and the ENT doctor last year said I had pulled a muscle due to the overhead painting. Other diagnosis's from doctors were ear infection, ear infection again, migraine, chronic headache, a virus, neuralgia, soft tissue damage, nerve damage, neuralgia again, nerve damage again, migraine again and more recently left side facial pain. MRI of head and neck was marked normal last year.

Please feel free to comment if you are suffering from similar.

Whirring Wanderer

Update March 2014 Private ENT Appointment

I had my private ENT appointment on Fri 14th Feb with Dr Marshall at Nuffield, Glasgow.  The doctor was very welcoming and pleasant although there was one massive problem, he had NOT received the referral from my GP, this was the second referral that had not been received.  Dr Marshall had no access to my medical notes and no access to the MRI previously carried out in 2013 six months after my symptoms had started.  I had to explain everything to Dr Marshall which I was happy to do, a fresh pair of ears always helps. " I was sitting watching television in Oct 2012 and noticed a woosh noise followed by a massive headache next morning, pain and pressure in my ear and neck then more symptoms then developed...." you get the picture I went through all of my symptoms.  He examined me and tried to separate a few of the symptoms but I had to interrupt and said the reason I was there because every other GP has done the same, I explained I had none of these symptoms before and it all stemmed from that one night of the woosh and headache.  I mentioned I had painted my ceiling before my symptoms started but felt that I was being rather stupid saying it but somehow I felt sure it was connected.  He decided that possibly my eye symptoms were not associated and it was a coincidence that I had developed a haze/spider web in that eye and a pressure feeling and that he was unsure why my eye creaked.  I was happy to put that aside if that made him feel better but what did he think caused my other symptoms?  Well he couldn't give me an answer and provided some recommendations for my GP to follow.   He wasn't too interested in the rhythm of my tinnitus and when I mentioned Pulsatile Tinnitus he quickly moved on in the conversation although I mentioned three times it was slightly worrying that it reminded me of a baby's ultrasound. He did examine me, looked at my throat, ear and nose and palpated inside my mouth and my neck. He said he had no idea what was causing my symptoms. Four days later I received my invoice of £200 and a diagnosis of LEFT SIDED FACIAL PAIN. Weirdly I assumed the area where my hair grows is called my head or my skull, the parts I pointed to and had conversions about were my head, I never mentioned anything about my face or facial pain!  The recommendations were to visit a dentist- already done, visit optician- already done and a range of blood tests- done they have all come back clear for antibodies and Vasculitis. A referral to a pain clinic was also recommended this has been followed through and I have received a questionnaire sheet and body map to fill in but there was little room on the head of the body map to mark and explain, so the picture attached is what I printed out and included when I returned my questionnaire, I also gave a full list of my symptoms.  I marked an X where I have the constant pain and pressure and a O where I felt the pressure and woosh/whirr noise.  Do I feel stupid doing this? Yes I absolutely do but as no one is listening, I felt I had to. I am the one suffering and have suffered since October 2012 and no one seems interested in trying to help me.  I work hard and pay taxes the same as everyone else, I don't abuse my body with drugs, I don't smoke, I have an occasional glass of wine which I now struggle with as my head doesn't like it and the noise in my head gets really loud, I am not overweight and do not cause a burden on our NHS system yet the NHS dishes out Methadone, Gastric Bands, Nicotine patches and has to carry out numerous heart operations to unclog peoples arteries as they eat nothing but high fat foods, is the system really fair for people like myself?  I will await my pain clinic appointment.

Thanks for reading Whirring Wanderer

The story so far! December 2013/January 2014

Symptoms are still present, I finished the 16 days of Nasodren and no change.  Let me take you back to last year to pick up the rest of my story taken from my diary where I had been to the GP in July 2013 and whereby they told me they would not investigate any more.  I decided to move to a new GP surgery where it would be smaller and have fewer doctors and I wanted to be treated as a brand new patient and for them to make a diagnosis of their own.  I joined in August 2013 and had my new patient visit with the nurse on the 23rd.  It took me a few weeks to pluck up the courage to visit the actual doctor as I felt I would be treated the same as before and not believed that my symptoms were real and need investigating.  It also gave me time to carry out more research on the internet about my symptoms. I now believed I had Pulsatile Tinnitus and arranged my first GP appointment on 24th September 2013 with Dr Dosumu.  Dr Do. listened to all my symptoms and decided I had neuralgia caused by nerve damage and that the tinnitus and other symptoms were non related.  She was reading from the computer screen and added that my previous doctor had noted I had Neuralgia.  I questioned this and explained that my woosh now whirr had started first, followed by headache the very next morning, I also asked about the pressure I had in my head, ear and neck because it was all one sided but this was dismissed and labelled as neuralgia. Dr Do. decided to explain what neuralgia was but I interrupted stating I was very well aware of what neuralgia was. I was starting to feel uptight at this point as everything I said was dismissed, I felt the more questions I asked the more rude and dismissive Dr Do. was being. I said I had come to the surgery as a new patient because my previous one did not seem to listen to me.  I continued to question the diagnosis on why Neuralgia would cause the sound in my head. I was then arrogantly told I did not have pulsatile tinnitus when I mentioned it. I had offered that I believed the noise I am hearing is pulsatile tinnitus by researching my symptoms recently. Dr Do. said that I had tinnitus but certainly did not have pulsatile tinnitus. Dr Do. decided the best course of action was to give a prescription for Gabapentin for the headache that I was to take for 3-4 weeks and then arrange a follow up appointment.  I said I would like referred to see someone about the headache because it was not normal for me and for the fact it had continued for so long, she said if nothing had changed at the follow up appointment I could be referred to a neurologist if I brought a name for referral.  I was slightly puzzled by this and asked you mean private? she said yes because everything serious had been ruled out by my previous doctor's surgery and as I'd had a previous MRI scan marked normal, they would see no reason to refer me.  She said I had been fully investigated and nothing was wrong with me. I came away feeling like I was being judged feeling like I'd made the whole thing up, so much so that I was now being refused investigations. 

This has followed me like a bad smell from the previous GP surgery where I was told they would no longer investigate my symptoms. I am unsure why every GP I have seen continues to separate all the symptoms that I am experiencing when most of them started at the same time.  I took the prescribed Gabapentin for 3 weeks and it did nothing apart from make the pain in my head feel 3D, I felt as if the pain was jumping out the side of my head and it made me feel very sleepy, spaced out and my eyes were stinging and bloodshot. I also felt really off balance more so than normal.  I stopped the prescription after 3 full weeks, I never made another GP appointment because I felt it would be a waste of time and I was sure Doctor's were labelling me as a hypochondriac and I'd be put in a straight jacket anytime soon.  The new doctor's (Dr Do) attitude was very defensive and to the point arrogant.  I could not put myself through meeting her again.  She did not treat me as a new patient and her diagnosis was not made of her own accord she read from the computer screen.

Before I knew it Christmas was nearly upon us.  A few days before Christmas I noticed I had a bit of a sore throat on the left side and I woke on Christmas morning to find I could hardly speak as my throat was so swollen and I started wheezing.  I got an emergency appointment at the GP surgery on 27th Dec 2013 I never did catch his name. I had a throat infection and was given a prescription for Penicillin for 7 days.  I think my body is run down as I normally don't take anything. Mr Wanderer was with me as I felt terribly off balance.  Mr Wanderer decided to tell this GP all about my on going symptoms since Oct 2012 and that nothing was being done, the GP decided to explain all about neuralgia and nerve damage, this was another doctor reading from the computer screen!!!  I had enough and asked to be referred to a private ENT Dr Marshall who I had found on the internet because of the on going sound I was hearing in my head and if I had no joy there I would then look at a private Neurologist as suggested by Dr Dosumu. The GP said the referral would be done and referred that day, he had all the details up on his screen.  As of yesterday the 22nd Jan 2014 the referral still had not been done as I found when I called the surgery.  Today 23rd Jan 2014 I seen Dr Stevenson so that he could write up the referral while I was there.  It transpires that the practice/surgery has two GP's Dr Stevenson & Dr Dosumu and at my previous appointment I had been unlucky to see the locum that simply forgot to do the referral I asked for.  I am glad I met Dr Stevenson as I preferred him over Dr Dosumu.  Dr St. apologised profusely and typed the referral while I was there sat with him and he then walked me through to the reception so I could see him giving it to the reception staff to send.  After explaining all my symptoms Dr St. believes I am suffering from migraines.  I just nodded and never expressed the feeling boiling in my belly, about to explode a wrath of expletive words.  I had already told Dr St. that no one was putting my symptoms together and every GP I had seen was trying to separate them.  I understand that I am new to the surgery but surely it doesn't take Einstein to realise I am suffering and have gone there to get answers and treatment.  I will await my appointment to see the private ENT doctor.


Whirring Wanderer