What first?

[grumpy]

Hi
Like everyone in the world with eds I have struggled to even get a basic diagnosis (EDS 3 and some type of autonomic problem via Prf Grahame in London after 12 years of trying locally) but my symptoms (beyond joint pain and tiredness) seem to point towards all sorts of things that effect EDSers. I have severe headaches behind my eyes, inner ear type dizziness, near fainting, raging tinnitus, blood pooling, have trouble thinking, unable to wee (intermittent catheter) etc. Do I try to get them (being Rheumotologist’s and GP) to look into Chiari (rheumo looked bemused when I mentioned it) or mast cells or what?

I do have 3 prolapsed disks in my neck which the physio blame the headaches on. So desperately want to get on with life and all the plans I have for my business and can’t get any help.

What do you think?

Thanks
Graham A
Uk

PS Thought you may like to see my watercolour of Louis and my Lambretta sketch.

Attached files

[Barbara]

Hi Graham,
Wow, love the pictures! The Lambretta takes me back to the late 60’s, when I was a teenage Mod.

I know what you mean regarding where to go first, my accident (which triggered all of this) was in 2002 but I’m still seeking effective treatments, for some of the more troubling symptoms. I managed to track down various experts through the years as the symptoms progressed but none seemed to cover the full condition, merely ‘aspects’ of it. In fact, it’s only recently (in the last couple of years) that I’ve really started to understand the whole picture and Dr Diana’s YouTube videos provided several of the missing links.

I think it’s a case of prioritising. Some of the things you personally can address, starting now, other things need an expert’s investigation to diagnose for certain (and we all know this take months in the UK) so that needs instigating as soon as possible, there’s a certain element that’s still in it’s ‘new science’ stage, so you may need to experiment a little. We may all have similar symptoms but, we are all different and have reached this condition we are at now via different journeys, if you follow my meaning, so what may be beneficial for one may not be beneficial for all.

I am a little short of time at the moment, so I will ask you to read the following post for now, where I have tried to summarise the things that have been found to bring positive results. Later, I will explain in more detail, the aspects I have mentioned above.

http://prettyill.com/forums/viewthread/712/#3540

I wish you ‘All the Best’.
Regards
Barbara
(UK)

[Barbara]

Hi Graham,
Maybe the things that need dealing with first, are those affecting your head.
1) What brings on the headaches?
Is head position involved, i.e. looking down (head in flexion)?
If so, this is a common finding, so I would advise you to try and avoid this position wherever possible, i.e. carry out physical tasks sitting down, so the angle of the head is not as acute, keep paperwork at eye-level (books/kindle on bookrests, raise your laptop, etc)

Do you wake up with the headache ?
If it’s a headache you wake up with, it could be a cerebro spinal fluid (CSF) flow issue, due to the position of your head whilst sleeping. During waking hours our muscles help our ligaments to hold our heads, however during sleeping hours, we do not have the benefit of muscles working and so, we are more or less reliant on our ligaments to hold our head in a good position. If you have the stretchy type of EDS, this means the ligaments that hold ‘your head on’ could be stretchy too, do you get what I am saying ? Many sleep in a rigid cervical collar to help with this. It could also be circulatory (due to malfunctioning autonomic system), many of us sleep with the head of the bed elevated. I actually sleep sitting up.

Is the headache there all the time ?
It could be worsened by lack of oxygen in the room, every day ensure you get a ‘change of air’ in the bedroom and any room that you spend a lot of time in (even if you have to wrap yourself up in at coat and gloves while you have the door full open for 10 minutes!).

Can you describe it ?
Is it an acute pain at the bottom of your head (often felt in those with CSF flow issues), especially if it also affects your neck and shoulder, if so, you may need to wear a collar during the day too, to help keep your head in good relationship to your neck and assist in optimum CSF flow.

Useful medical tests would be:
Cine MRI – to check for CSF issues
MRI – to rule out other causes and to check for the things I highlight in the following post

http://prettyill.com/forums/viewthread/712/

2) What brings on the dizziness ?
Just as there are various descriptions of dizziness, there are various causes, e.g.:

Disorientation – where you’re suddenly mentally ‘a bit lost’, usually momentarily
Lightheadedness – like the feeling before your going to faint
These can be brought about by vascular issues, like insufficient blood to the brain for instance (maybe the blood is fighting to get in, against raised intracranial pressure).

Vertigo – where your surroundings appear to be moving, when in reality they’re not
This can be caused by raised intracranial pressure, affecting the nerves controlling the balance mechanism.

Useful Medical Tests would be:
Neuro-opthalmologists assessment to look for Swollen Optic Disk (sign of raised intracranial pressure). If found, then a course of Diamox should help, it certainly did for me.
Neuro-otological assessment to look for any other causes

You can perhaps address these as a starting point.
Regards
Barbara
(UK)

[Barbara]

Forgot to mention, the Diamox helped reduce my tinnitus and also my eye pain.

[Dr. Diana]

Wow, Graham, why the HECK didn’t you enter the Spoonie Art Contest?! These water-colors are amazing! 😉 Next time, OK? Meanwhile, great advice from Barb, as always. I used to sort of laugh when doctors asked me, “So, what two symptoms bother you the most — we’ll start there.” TWO SYMPTOMS?! Gads. I had about 50! How to choose? I agree, and usually asked to start with my brain! Then, I guessed maybe my heart? Jeez, how are we supposed to know? I have a symptoms checklist (scroll down under Articles and Handouts) and if you can fill it out and get it back to me, it helps me clump various symptoms to certain causes — that may help. It does sound like you may have some high intracranial pressure going on, but with your history of injuries, a review of your head MRI’s would be a great place to start. You DO have head MRI’s, right? The raw DaM data (your own disc), right? Hang in, friend, we’ll all do our best to get you up to speed! 😉

[grumpy]

Hi
Feels like I have come home at last…people who understand…
Thank you both. I will fill in the Symptom checklist when next on the PC (ipad won’t open it to edit), it’s an interesting list that includes many things I have trouble with but hadn’t necessarily linked. Very interested to see what my symptoms point to.

Headaches: Looking down makes it worse but I have periods where it is just a nagging constant thing and periods where it is awful. These awful times are normally brought on by an unexpected bump, stepped off a curb I didn’t see or a bump in the car. They are at the back of my head but hit me behind the eyes. I have seen a physio after neck MRI (2 or 3 prolapsed disks) and she eventually helped by moving my head on my neck for me , she thought to get it tracking properly. Generally it is at the nagging constant low level – compared to when it is horrid rather than compared to no headache – state until I do bump it and then it gets horrid for a few weeks. It’s generally worse at night (hence sitting here typing at 5.30 am) It has become one of things I put up with it and I have given up mentioning it to doctors.
Have wanted a neck brace to try for years but have never convinced anyone to let me have one. I use bandages a lot for pain relief elswhere (Profore #4 cohesive is amazingly useful for ankles, fingers etc) but necks are not something you can bandage…

Dizziness: vertigo. dizziness on head movement, especially in bed when turning over but feel slightly dizzy all the time just moving my head. Had all the normal physio stuff for inner ear problems and it hasn’t touched it so given up trying to fix it. Procloperazone helps with the constant nausea.

MRI: I had a head MRI about 10 years ago to rule out MS, no idea what it showed except neurologist said I didn’t have MS. How do I convince my Rheumotologist to refer me for a head MRI and to see to a neuro again? how do I get a copy of the pictures and raw data? What is a ciny MRI?

I saw Prof Grahame in London once last year after 12 years of battling locally but have no follow ups as my Reumo used to work with him. Unfortunately the only thing she ever does is check my Beighton score, it’s the only thing she has. I did convince her to refer me to the local autonomic “expert” but he was completely uninterested just as he was with my daughter.

I have got to the point where I have given up on the head symptoms. My life has fallen apart mostly because of them, my plans to make a go of my own business after being made redundant have floundered as how can you be creative and run your own shop with constant jont pain, headaches and tiredness? I am one of the many who are too ill to make a real go of things but not ill in the right way to get help. The UK NHS is geared up for obvious things that need operations to fix not middle aged men with invisble problems that take time and thought. I have managed to be referred for some of the joint problems, (had a bone taken out of my thumb to help with the arthritis and seeing Ortho about impinged hips ) and I have at last found a GP who is keen on finding out more about EDS, she has been great with the urinary problems and with getting my daughter seen in London. She is trying to get us both compression tights and she has also referred me to Prof Mathias (UK PoTS expert) but the waiting list is huge.

My 16 year old daughter has at last been to see Prof Mathias in London about her autonomic problems and been diagnosed with EDS too. Hopefully she will get some help now.

Sorry had enough typing…sorry it’s a bit all over the place…like me really….will fill in the symptom sheet. Attached another pic or two.
THANKS
Graham

Attached files

[grumpy]

Sorry to reply to my own post but missed something Barbara mentioned..

Useful Medical Tests would be:
Neuro-opthalmologists assessment to look for Swollen Optic Disk (sign of raised intracranial pressure). If found, then a course of Diamox should help, it certainly did for me.
Neuro-otological assessment to look for any other causes

How do you go about getting these referrals? I suspect both are at centres covering the whole country?

Thanks

[Barbara]

Hi Graham,
No problems, I reply to my own posts all the time, if I’ve forgotten something, or find something else of interest. Lots of people look at the posts, even if they don’t answer them. I don’t answer them myself sometimes, even when I probably know the answers, usually because I’m too SHATTERED! (as many of us are on here).

1) Neuro-opthalmologists assessment: – first of all I went down to Vision Express where, at the same time as an eye-test, if you ask they’ll take a photo of your funduses and again if you ask, they will give you a password so that you can access them yourself, online (to examine, or to send to your GP, or other doctor). It’s the only place in the body where the blood vessels can be viewed directly and Dr Diana has told us what to look for.

My optician there examined the fundus photos with me, to look for changes in the ‘a/v ratio’, to look for any ‘tortuousness’ or ‘beading’ of the vessels and to look at the state of the optic disk. If they find any abnormalities, they should refer you on, via your GP, to a Neuro-Opthalmologist (NO) for further investigation. I went to see a local NO, within 15 miles, so one might be available in your area.

These things above can be easily overlooked by the optician, especially if they are not used to looking for them, so you may need to educate them on the nuances of EDS etc. You really need to review the photos with your optician and don’t be afraid to speak out if you see something they haven’t:
Normal A/V ratio = 2/3 to 4/5, so arteries are at least 2/3 the size of veins.
Abnormal A/V ratio = 1/2, so arteries appear to be just half the size of veins (aka 50%).

Tortuousness = they bend and contort in places, not running a smooth course.

Beading = where a vessel’s walls are not smooth and parallel along it’s length, they bulge out in places, like beads.

This check is vital because obtaining the correct treatment depends on these things being spotted in the first place. I think you will find a course of Diamox should help, as mentioned above.

2) My Neuro-otological assessment took place at the UCLH, when I went to see Prof Christopher Mathias, who diagnosed my P.O.T.S.

For the dizziness, it was a Dr Davies and her team who put me through a suite of tests and determined that I had Peripheral Vestibular Dysfunction (due to the head injury) It manifests very similar to how you describe it. I was put on Cawthorne Cooksey exercises but couldn’t ever finish the whole sheet, as I was too badly affected. They did help to some degree (that is the exercises that I could achieve).

I think your GP is your first port of call and, if they only allow one thing to be discussed per appointment, a simple way of approaching that is:

“Doc, why am I so disabled, here’s my list of symptoms” and hand him a copy of your symptoms list – let him sort it out!
Regards
Barbara
(UK)

[Dr. Diana]

Yes, Graham, a trial with Diamox is certainly in order! One potential problem, though, is that you can develop intracranial hypertension without swelling of the nerve head (“sine papilledema”). You will likely still respond well to Diamox. When I can publish the results of the treatment trial we are doing now, I hope to be able to explain it so even the smartest doctor can understand (and yes, I’m sort of hinting at some of the doctor egos we run into…) ; Please don’t let them do a lumbar puncture on you, though! We don’t tend to heal well and many of these folks develop chronic leaks after a lumbar puncture. That is MIS-ER-A-BLE. Diamox can be diagnostic all by itself! An MRI is needed to rule out other causes of increased pressure (such as “space occupying lesions”). Fingers crossed for you! 😉

[grumpy]

Thank you.
I have a rough plan…GP appointment booked for Wednesday. I need a “water tablet” as I am currently doing very little wee during day and loads overnight (would you believe 1.5L – eds sized bladder – half way through the night and often fainting during self Cath as it takes so long), so will suggest that Diamox may well do both jobs as a test for both problems.

GP has referred me to Prof Mathias so will write to him with full list of symptoms and links to your pages before the appointment. He has been very helpful with my daughter and we have exchanged emails so may well be able to get some long distance advice before seeing him.

I had my eyes tested last week and will try opticians again this morning to see if they can do Fundus photo (don’t Fundus make frozen food?) and if they don’t do it then I will pay for test with the optician Barbara mentioned.

Have been extremely fed up over the weekend because as I now suspect CSF problems may be the cause of the trouble I have had for years but I also know it will be a huge mountain to climb to get anyone to really run with it. I also had to admit to my father in law that I am really just too ill to do enough work to support my family, we have managed to hide it from him by living off my redundancy money but it has all but run out now and the trouble is that it brought it home to me too.

Thanks for being understanding voices. Wish I’d found you years ago and especially wish I’d found you before the closing date for the art competition….

xx

Graham

[Dr. Diana]

Sounds like a plan, Graham! Diamox is only a mild diuretic, but GREAT if they’ll go for it! I’m almost ready to begin writing to get this in peer-reviewed journals (it can be torture — editors usually like NUMEROUS rewrites, if they accept it at all. Wish me luck!). Once it’s in journals, you shouldn’t have this battle any more… No worries on the art contest — I think it needs to be a “regular” — maybe every 6 months, don’t you? Big hug…

[Barbara]

Have wanted a neck brace to try for years but have never convinced anyone to let me have one.
THANKS
Graham

Hi Graham,
You can buy them on the internet, I found the ‘Philadelphia’ collar the best for holding the head in a good position with the neck and also, for supporting the neck. You do have to wash it daily and it’s best worn with a liner, to stop it making your skin sore (warning, the liners are as dear as the collars!).

For the Philadelphia Collar:
http://www.chaneco.co.uk/orthotic-product.asp?prodId=190&specialoffer;=

For the CoolMax Liners:
https://www.chaneco.co.uk/orthotic-product.asp?prodId=195&specialoffer;=

It may seem very strange when you first put it on because, as your ligaments are lax, you will more than likely have your head hung forwards but please persevere and you will soon feel a difference and reap the benefits.

Regarding your medical records and copies of your past scans, under the Data Protection Act you are entitled to your records and Radiology (usually in electronic form on discs, with viewing software, these days), simply write, phone or email the Medical Records department of the hospital and they’ll tell you how to go about it, most have standard forms to complete.

In the UK, if you’ve been seen within 40 days, you usually just have to pay an administration fee for the copying, otherwise there is a standard fee – but it’s worth it.
Regards
Barbara

[grumpy]

Hi
I have been told all my life that my posture is to blame, “sit up and get your head over our shoulders” I wonder what it feels like to naturally have good posture?
Collar looks like a sensible thing to try, would it be worth trying just at night? It’s a big step to wear one outside during the day (and even in front of my kids) ; it will show the whole world that I am actually ill and I will have to explain it over and over again to all those people who currently think I am well. Will talk to my GP about it.

Will definitely try to get soft copies of everything from now on.

Sitting in a coffee shop trying to turn the Symptom check sheet into a list of my symptoms for the GP appt tomorrow.

Graham

[grumpy]

Sounds like a plan, Graham! Diamox is only a mild diuretic, but GREAT if they’ll go for it! I’m almost ready to begin writing to get this in peer-reviewed journals (it can be torture — editors usually like NUMEROUS rewrites, if they accept it at all. Wish me luck!). Once it’s in journals, you shouldn’t have this battle any more… No worries on the art contest — I think it needs to be a “regular” — maybe every 6 months, don’t you? Big hug…

Good luck indeed. There’s lots of EDSers out there who need help and doctors aren’t helping at all yet.
6 monthly art contest would be cool, probably have about 100 years worth of entries ready to go though…;)

Been ill is so boring and hard, why does getting help have to be such a battle just when you aren’t up to battling?
Graham

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[Dr. Diana]

I totally understand your frustration, my friend! We can easily dump all of our savings into doctors and ineffective treatments (been there, got the T-shirt)! I’m pedaling as fast as I can, OK? Don’t give up! Not when we’re so close to getting much needed treatments, OK? 😉 And the collar? I still wear a soft collar at night time — I’m not certain if I ‘need’ it, but it does give me comfort — like an old teddy bear. 😉 After reducing my head pressure, I no longer needed my hard collar, though (after 2 years of use!). We often complain that our illness is invisible. When you get up the guts to wear the collar in public, it’s amazing how many people want to offer empathy! We are definitely a visual society. So, perhaps it can work in your favor? 😉

[Author]

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