Still unsure if I have Fibro - headaches

[HayleyO]

Hi, after numerous attempts to see if I have Fibro I am still no further forward.

A test done on giving my symptoms was inconclusive, the doctor then said that she would do tests to rule out other causes for my

I am worried as since September last year I have been suffering most days from a headache. The pain is across my nose, like I have been hit in the face going round my head and into the back of my skull into my neck. Lying down or putting head back makes it worse.

At night in one ear I can hear my heart beat and it sometimes feels like fluid running in my ear.

I possibly had vertigo several times last year, although it was a vague diagnosis. I was initially rushed to hospital as the paramedics thought I was having a stroke.

A brain scan showed 2 patches on my brain, initially thought to be brain tumours, but I was told they were possibly due to age or high blood pressure or cholesterol - I am on tablets for both, there was no follow up.

I just wondered if others have similar headaches. My sinuses have been scanned and my nose checked, plus an initial check on my ears - nothing shows. I was supposed to have a hearing test and ear pressure check, but after 3 weeks I am still waiting for an appointment.

As the headaches have been going on so long I am concerned.

My blood pressure has been okay, I am on a low dose of Losartan, except I have White Coat syndrome which makes taking accurate readings difficult.

Unfortunately, last time for my home readings my first readings were fine, but then I had a slightly higher reading and then my readings for my pulse and blood pressure shot up. Due to my mother having high blood pressure and a stroke at 51 I have a phobia about taking my blood pressure, the doctor said she wasn't concerned and to leave doing them for a while.

 

[sunkacola]

@HayleyO ....I am so sorry for what you are going through. This really sounds awful to me. Something like that in your head makes everything in the whole world harder. My first thought was that you should see an ENT specialist. You say you have had a scan done on your sinuses and your ears checked, but were those done by a regular doctor or by an ENT? I ask because an ENT will have knowledge of possibilities that a general practitioner will not have, so if you have not seen a specialist, I think you should.

I one time had something happen in one of my ears that made me deaf in that ear. For a year and a half I asked my doctor to refer me to an ENT, and they refused, saying nothing could be done. The ear got better, but when the same thing happened a few years later I just paid the money out of my pocket to go and see an ENT myself, and in five minutes he fixed the problem right there in the office. I could have had it fixed the first time that easily, too....that doctor did not know what the ENT knew.
Ever since, I have been aware that many doctors simply do not know what they don't know, and it is necessary to see a specialist for some things.

Whatever you decide to do I hope you find some relief for this!

 

[HayleyO]

Thank you Sunkacola,

My sinuses were checked by a CT scan and were fine. I saw an ENT Consultant who said I had wax in my ears and removed it. He said the fluid I felt was due to the steroid spray I had been given, which I knew was incorrect as I had it before using it and I have been told to stop it I still have it. He said the sound of my heart beating when I lie down was probably due to the wax, but it still continues.

I had my appointment nearly 4 weeks ago and have not received an appointment for a hearing test or a check on my ear pressure yet. The ENT Consultant did say he didn't think my dizziness which I was told was probably vertigo wasn't in his opinion anything linked to my ear.

I was hoping the hospital ENT Consultant would sent a letter to my doctor ( unfortunately I have never seen him despite him being my named doctor for 5 years.) I really wanted to see a copy of any letter sent which should have been added to my file so I could have read it on my NHS app.

Every time I am lucky enough to see a doctor it's a different one, I thought I saw a very good doctor who was trying to see if I had Fibro, unfortunately I saw her 3 weeks later and she couldn't remember me and her notes on my file were incorrect. She didn't seem interested in discussing the possibility of Fibro but was keen for me to have HRT.

I have had a lot of blood tests and so far they have shown nothing

 

[sunkacola]

I am sorry to hear all this, as it sounds frustrating and discouraging. I live in the US, so don't know a thing about the healthcare system in the UK. Maybe someone else here who lives in the UK can offer advice to you on this. If there were any way to set things up to see the same doctor each time (assuming you liked the doc, that is), that would make things so much easier.

Is an "ENT Consultant" the same as an ENT specialist doctor? I am not familiar with that term - consultant - and it sounds more like a physician's assistant than a full specialist doctor, but that's probably just because I am not familiar with the term.

 

[sdellin]

Wow, I'm an so sorry you are having these problems. I am glad nothing terrible showed up in any of the tests, but I understand that doesn't help toward a diagnosis. It's discouraging the only doctor you thought was good didn't even remember you.

I really hope you find answers soon. A headache like you are describing can't be nothing. A thought, have you talked though a dentist? I've read about things like certain types of fillings tuning in arbitrary frequencies, like a radio station. I know it's a long shot, but I'd leave no stone unturned. If you haven't done it yet, try typing in all your symptoms online and see if anyone comes up.

 

[HayleyO]

Thank you for your replies. I googled all my symptoms and a possible answer of "cervicogenic headaches appeared. This seems to really fit the symptoms I have, especially as I previously had whiplash after a car accident and have been told by a rheumatologist that I have osteoarthritis in my neck. Apparently, pressure behind the nose and fullness in the ears are common symptoms along with neck pain and headaches.

I am trying to view the report of my consultation with the ENT consultant 4 weeks ago and was hoping that a letter would have been sent to my GP by now which I would like to have read. Unfortunately, when I rang the hospital they hadn't entered anything on my file about the appointment and there's been no follow up appointment for a hearing test or to test ear pressure.

I tried to make an appointment to to talk to a GP, unfortunately always a different one, but was unable to get through as only urgent calls were being taken.

I have booked a private ear consultation, bought a special pillow to support my neck to help me sleep and have stopped having baths which seems to make the headaches worse, probably due to the position of my neck. I also have a plentiful supply of paracetamol!

At the moment, I feel like I am "trying to push water up hill" and am trying to get a diagnosis by myself. I am sure many hear have been through the same. Thank you to all who have given me support.

 

[sunkacola]

@HayleyO thanks for the update. It sounds to me as if you are doing everything you can. I am so sorry that trying to get medical attention is so frustrating for you! I truly hope that you get some answers...and more importantly yet, some real help...very soon.

T he "pushing water uphill" image made me smile...but in a rather sad way, because it is all too true for so many of us, if not all of us, who have fibro and/or some other disability that is not readily treatable. At times this frustration can be overwhelming. Just know that we understand here, and will be here to support you in whatever way we can. I know that only has very limited effect, but it's there for you.

 

[HayleyO]

Thank you.