Went To A And E Yesterday

[louloutinks]

Hi just a bit of advice needed really as I am wondering if all this is due to autonomic system.

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.

[anna]

Not sure if this is relevant as your headaches are worse when sitting and better when standing but here:-

Dural ectasia, an expansion of the dural sac surrounding the spinal cord, is one of the most common orthopedic manifestations of Marfan syndrome. The purpose of the present study was to characterize the clinical symptoms associated with dural ectasia in patients with Marfan syndrome and to understand the effects of symptomatic dural ectasia on the overall health of affected patients. Twenty-two volunteers aged 9-55 years with Marfan syndrome, and dural ectasia diagnosed by MRI or CT, filled out a "symptoms" questionnaire and completed an SF-36 health survey. Overall, It appears that the symptoms associated with dural ectasia have a marked impact on the overall health of patients with Marfan syndrome. Based on our findings, a "classic" picture of dural ectasia in the Marfan patient may consist of low back pain, headache, proximal leg pain, weakness and numbness above and below the knee, and genital/rectal pain. Symptoms, when present, are typically moderate to severe, occur several times per week (often daily), are commonly exacerbated by upright posture, and are not always relieved by recumbency.

Our geneticist felt my sons headaches were likely due to this problem and that he had seen it a number of times in EDS patients of his.

" 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 get these sort of symptoms with the migraines I get, which are often triggered by me putting my head back too far, like reaching up to a high shelf etc!!!

[lieze]

I think it's great that you're getting it checked out Tinks. You are in pain and this is greatly affecting your daily life.

I worry too about wasting resources-I think somehow we have to let that go and try to do what we can to get help.

Let us know what you find out.

I hope you get some relief soon.

[louloutinks]

Hi and thanks for replying.

They ruled out anything vascular with the CT but they were talking about pressure - would this be CSF? Surely this would have shown on the CT if it was that?

There is definitely something going on and things are getting worse not better. It seems that I am getting more things going on each time I get these headaches and ear problems.

Anna, thanks for the info. My headaches get instantly worse with sitting and are excruciating. They do get worse on standing but ease after a while. And they tend to go dull when I lie down. I have EDS with marfan habitus so would that be relevant?

I do have migraines but this is different.

Since March I have had progressive worsening of ringing, hissing, head pressure, positional headaches, arm numbness, neck and shoulder pain etc etc

I have looked at Dinet and it does not seem to fit autonomic dysfunction.

[sugartwin]

Hi and thanks for replying.

They ruled out anything vascular with the CT but they were talking about pressure - would this be CSF? Surely this would have shown on the CT if it was that?

There is definitely something going on and things are getting worse not better. It seems that I am getting more things going on each time I get these headaches and ear problems.

Anna, thanks for the info. My headaches get instantly worse with sitting and are excruciating. They do get worse on standing but ease after a while. And they tend to go dull when I lie down. I have EDS with marfan habitus so would that be relevant?

I do have migraines but this is different.

Since March I have had progressive worsening of ringing, hissing, head pressure, positional headaches, arm numbness, neck and shoulder pain etc etc

This could be a low-CSF pressure headache, not uncommon among people with EDS, especially Classical. It wouldn't necessarily be visible on a CT, might take an MRI.

http://www.ncbi.nlm.nih.gov/pubmed/14683542

There's a link about the known association. Here's a link about intracranial hypotension, the situation you could be in.

http://www.medscape.com/viewarticle/467001

Full disclosure, I'm a researcher who interprets data of a technical nature for a lay audience. I am not in the medical field.

And let them worry about wasting their resources. You worry about you.

[louloutinks]

thank you for the links sugartwin.

I was on a site regarding types of headaches today and the csf headache did describe my headache best, especially with positional and also hearing issues. It also stated that it can cause tingling in arms which I do have but not sure if it is related.

I suppose I shall just have to wait and see what is going on but I hope it gets sorted pretty soon.

[sandymbme]

Just a quick note to echo what sugartwin said, don't worry about the waste of resources. MRI's see a LOT that is not visible on CT, it is a MUCH more sensitive test. Not to mention carries a lot less risk to you as it gives off less radiation. If you have not had an MRI of the brain, it is one of the baseline tests most of us get at some point or another to rule out any neurological cause of our dysautonomia, anyway. So think of it as a routine screening. Besides, severe headaches are not something to be lightly dismissed!

Sandy

[HopeSprings]

I think you need to rule out (or in) the CSF leak - it keeps coming up. Maybe if that's it, there will be something they can do for you - I hate to see you go on like this!