January 2015 It is not all in my head!!!

Still suffering and still searching for answers.  I found a Neurointerventialist in New York by googling and reading reviews. The Whooshers.com website that I have visited often also had good things to say about him and many patients in New York and beyond have reached out to him and been treated successfully.  Whooshers website is an interesting read, I found the web site by typing in wooshing and headache.  I made contact with Dr Shapiro of Langone Medical Centre in December and sent my Mra/Mrv on disc by post on the 2nd January.





7th January I was expected to be at a Pain Clinic appointment for another Occipital Nerve injection but I forgot about it and I'm ashamed to say I forgot to cancel it. Dr Meiklejohn will think I am extremely rude. The truth is I am extremely exhausted and can't function properly and do not want to keep going to numerous appointments when doctors have no interest in helping me.  I have lost all trust in them, I feel like I'm a burden to them and a hypochondriac.



On the 19th January my doctor surgery called to state a prescription had been written for me by the doctor and is waiting to be collected.  I have yet to collect it as I am unsure about taking it when I still don't know what is wrong with me. I have waited since the 12th December for the new prescription and I'm sure I can wait a bit longer until the Neurointerventionalist has had a look at my scans, then if nothing is found I will take the new prescription.



TUESDAY 27TH JAN 2015 DIAGNOSIS

I emailed the Neurointerventionalist Dr Shapiro in New York for a timescale of when he is able to view my scans.  In the evening he called, I wasn't going to answer the phone as it was showing "outside area" and normally it's marketing calls. Dr Shapiro had emailed me a few images and asked that I switch on my computer to talk through the images. The phone call lasted 45 minutes.  Diagnosis; A possible fenestration of the vertebral artery or a Vertebral Artery Dissection (VAD) that has healed separating the artery into two separate channels. The fenestration would cause no clinical symptoms however a vertebral artery dissection would cause all of my symptoms. This all makes sense when I read the symptoms of a VAD and then compare to my own suffering.  I believe when my wooshing baby ultrasound noise changed to a whirr is when the artery was healing to form the two channels.  I was actually hearing turbulent blood flow!!! I knew there was something wrong, there had to be, I am not imagining all these symptoms.  Dr Shapiro suggests a cerebral angiogram to confirm his diagnosis and a balloon occlusion test which would close off the artery to see if it stopped the sound in my head and if so a stent could be placed to help with my symptoms.



WEDNESDAY 28TH JANUARY

I walked and partly staggered 2.2miles to my GP surgery to see Dr Stevenson.  I explained I had sent my scans to New York and showed him the images I had been sent from the Neurointerventionalist. The doctor showed a little uneasiness in his seat and stated he wasn't an expert on these type of things and to move forward he would need a report so that it could be sent back to the radiographer at the private hospital where I had the scan carried out.  I explained I would not be paying for any treatment or appointments under private care but the doctor explained it had to be referred back there for another opinion.  It was very much a pass the buck attitude.  Dr St. gave me the GP surgeries email address to forward the report.  I emailed the Neurointerventionalist and asked if he would kindly write a report of his findings for my doctor so they could act on it.  Thankfully just two hours later he did and I forwarded it my doctor and to the Neurologist Dr Tyagi.



THURSDAY 29TH JANUARY 3.40pm

My GP surgery called to say the doctor had read the report and that an urgent referral had been arranged to Neurology.  I asked if I would be contacted by letter or telephone which was confirmed that I would receive an appointment by letter.


It looks like my journey on the NHS roller-coaster is not over just yet.





All for now
Whooshing 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