Went to A and E yeasterday

[Peglegs]

Hi just a bit of advice needed really as I am wondering if all this is due to autonomic system or it could be something else.

Had another horrendous headache yesterday and it was absolute agony if I sat down, better when I lay down after a while but seemed to go when I stood up for some time.

I crouched down to feed the cat and had an awful pressure from my shoulders into my neck,ears and head. I had this the day before too and it made my hearing muffled. i have been getting ringing, hissing, popping, uncomfortable hearing and hearing loss a couple weeks back with headache. I was concerned about my hearing and this pressure.

I had a good lay down and some pain killers. Later on though I decided to call the docs as I had a pressure on the left side of my head that I have never had before and it felt as though someone had there hand over the side of my head, face and eye, pushing really hard. So I called the GP and they asked me a few Q's and I told them I had a grey spot in my right eye only the day before and that the left side of my mouth had been spasming. They told me to go to A and E so I did.

They done a neuro exam and my three toes on the right side flared out when they run something up my foot (which I thought was abnormal?) and everything was ok. They said with my EDS and marfan habitus they wanted to rule out any vessel problems in my head and done a CT without contrast (I was thinking more of a trapped nerve issue going on so got concerned!) which thankfully came back ok.

I asked them what it could all be and the doctor said she would like to know herself. She is writing to my GP and is strongly recommending an MRI and an ENT. I asked her if it could be autonomic and she said not all of it. She said the headaches could be due to EDS.

If the CT scan picked up nothing and the neuro exam was ok, then what could an MRI show.

I previously had a brachial plexus MRI which showed no compression, as they thought I had thoracic outlet syndrome. I had a cervical MRI which showed minimal bone spurs and now a CT which showed nothing. I just feel at a loss as something is going on but nothing is showing on anything so that is why I am wondering if it is ANS playing up.

I feel like I am just wasting the resources.

[Robbysmom5]

I wish you luck and hope you can get some test that figures this out for you. You are NOT wasting resources. That is what they are there for ... you deserve this testing.

[Peglegs]

Thanks Robbysmom.

I am getting concerned about what this could be. They asked me if head got worse with coughing and sneezing which it did and they seemed concerned with this but this has happened for a long while now. Why is this a concern?

They ruled out vascular problems with CT scan but could it be a leak - would a leak show on CT WO/C? My hearing problems have got worse and worse since March this year along with these headaches and they are my two main worries - I know something is going on and I need to know what it could be.

[hemyinspain]

I totally agree with Jeanne, You definately aren't wasting resources!! You are sick, you know you are sick and it is not your fault that the people that should know what is the matter, dont. At least they are doing tests, I can only hope that they dont get to the point of 'I dont know, take this pill'. We cannot be expected to just go away quietly. This is our life and it is completely ruined. so whatever resources are necessary and available then you should use them. After all you havent chosen to be like this and Im damned sure you hate that your life is so completely controlled by medical conditions/hospitals/doctors/pills/tests/pain/intrusions....the list goes on.

Which A and E did you go to Peglegs? Did they keep you in? Or are they scheduling you for these CT's MRI's etc quickly with follow ups being quick too? You have so many complicating problems and they clearly do care about you for which I am so glad. How is your GP? Supportive I am hoping.

How are you feeling now? Have you had any respite from the headaches? Are you still suffering tremendously? Can you get any respite, enjoy anything?

I am trying to decide whether to go to the A and E department of the last hospital that treated (or not) me in Spain. The last time I went there was in 2008 for a blind blood patch following the results of an earlier cisternography showing a leak. The neuro I saw there was clearly not experienced in this field whatsoever and took an hour and a half of stabbing at my back to try to get the needle through the scar tissue. He failed and left me more traumatised than I have ever been in my life. Even if he had of succeeded he would only have put in 5mls of blood anyway which from what I read would not have done anything. I have not been back to that hospital since 2008 as I have gone down the UK path (and am now at the dead end). So to get an appointment through referral would take an awfully long time. So now I am thinking, ok so Im at a dead end in uk, I have probably been refused the referral to Dr Gray at Dukes, where do I go from here? Do I start the Spain route or do I keep fighting in the UK? I have heard it may be possible to get a referral to a Professor Rickard at Addenbrookes and that he may be able to help but how I get that i dont know.

I have been feeling much worse recently. I do not seem to have a minute free of headaches now even laying down although they are better when Im laying down. By the end of each awful, miserable, unproductive, painful day I am just longing for it to be bed time. That is why I thought I would go to the Barcelona hospital to A and E and really show them my bad symptoms and hope they will start afresh with diagnosis and treatments.

Im scared though because this neuro really is quite fierce and clearly not very professional (yet apparently renowned throughout spain and highly skilled in his field). He even filled in the paperwork of the blood patch claiming it to have been successful PRIOR to actually carrying it out! I had to fight to get him to re write this.

I so understand your need to know. I hope it isnt too long until you do xx

[Peglegs]

Hi Hemi,

I don't feel my best but I feel better than what I did the other day. Still have head pressure and very stiff neck but definitely better.

I was looking up headaches on a site dedicated to it and I came across the following:

Low pressure headache, usually due to Spontaneous Intracranial Hypotension:

Pain in a low pressure headache can be experienced anywhere, but most commonly it is on both sides of the head.

Some people will report a severe dull ache in the back of the head that is worse while up and about, and is relieved by lying down flat for 15-30 minutes.

Low pressure headaches are often associated with a muffling of hearing or buzzing in the ears that is also better on lying down.

The common cause of low pressure is due to a spinal tap or lumbar puncture procedure. About 20-30% of post-lumbar puncture headaches in one large series were located at the back of the head.

Some people will get a spontaneous leak of spinal fluid within the spine. The spontaneous cases are called Spontaneous Intracranial Hypotension.

Low pressure headache that is very severe and incapacitating can be treated with a an epidural blood patch procedure, which has a 70-80% success rate in typical cases.



The above matches my headaches exactly. So it could be IH. The docs did seem concerned when I told them that sneezing made my head explode when I had a dull headache. Coughing didn't, but it made the pain more intense and made me wince but it didn't 'cause' a headache.

I have changed my way of thinking that I am wasting resources as you are both right - it needs to be sorted - whatever this may be. x

[hemyinspain]

Good because u have to think of u and fight for u!
Which a and e did you go to?

[Peglegs]

I went to Princess Royal - my local one. The doctor was lovely - explained things well, listened to me and had a chit chat - wish they were all like that!