A couple of weeks ago Peggy left a comment about Cerebro-spinal fluid, which is something that I hadn’t heard about before.
What is CSF?
CSF is a clear, colorless fluid, that is around the subarachnoid space and the ventricular system which is in the spinal cord and the brain. It acts as a cushion and a type of protection for the brain and spinal cord.
Luckily I found that Dr. Hain had written about it here is an excerpt…
“Cerebrospinal fluid depletion may be caused by a leak, a shunt, inadequate production or too rapid absorption. Symptoms commonly include headaches, which are more severe in the upright position and are alleviated by supine or head-lowered below chest(Trendelenburg) positioning. Horizontal diplopia, change in hearing, tinnitus, blurring of vision, facial numbness, nausea, and upper limb radicular symptoms (tingling) may occur. These symptoms are nonspecific as they are commonly encountered in migraine and post-traumatic headache. Cognitive decline has also been reported (Hong et al, 2002; Pleasure et al, 1998).” In another passage Dr. Hain that CSF sometimes resembles Meniere’s.
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16 comments:
This is creepy. I've had multiple MRIs and even an MRA done on my brain. Tingling in my limbs and blurry vision have always accompanied my MD symptoms and they have been dismissed when I bring them up to a doctor. I see a neurologist for migraines, and now ophthalmology has taken on the task of testing my brain further. I'm grateful for this post... thank you Peggy and David!
Like Crimson56 I also experience limb tingling, and focus problems/blurry vision. I have a 24/7 headache that sometimes goes migraine on me.
My Doctors also dismissed these symptoms.
I NEVER had them prior to MD.
I had to wonder if I had MS, but the MRI showed no lesions.
Is it possible that people with Menieres have low or leaking CSF?
I had read an article on CSF, and mentioned this to my Doctor, who just dismissed that too. I still don't know if that might be going on with me or not, but I feel it is something they should be checking and not ignoring in those with intractable Menieres who are all describing the same or very similar symptoms.
Glad you brought this up!
Lauri, I get the feeling your doctor dismisses anything he didn't think of first, LOL!
I haven't had the tingling in limbs, but I DO have very blurry vision and frequent, awful headaches. I spoke with Dr. Charles Della Santina at Johns-Hopkins last year, and he told me there is a connection between migraines and vertigo, which could mimic Meniere's at times. But it wouldn't account for my chronic dizziness, only episodic vertigo. *sigh*
When I saw a neuro-ophthalmologist a couple of months ago about the blurry vision, she essentially shrugged. She didn't have a clue what was going on or what to do about it. It seems to be ongoing nystagmus, but why it's happening and how to get it to stop is anyone's guess now.
It's discouraging.
Regarding the vision issues...I saw the eye Doctor, who informed me it was weakened eye muscles, and gave me a prescription for glasses with "prisms".
They helped my eyesight (once my eyes & brain became used to them), but only from a distance of about 2 feet out to maybe 8 feet out.
He didn't relate the eye muscle weakness to the Menieres; he didn't seem familiar with Menieres.
I would guess though after so many attacks with crazy Nystagmus going on, that you could certainly develop eye muscle issues.
In the meantime I have lost the doggone glasses... Oops.
this csf is an interesting article, as i had menieres syptoms for many years before the real full blown version.
early symptoms got vertigo for a few hours feel sick etc, then wake up next morning and be tottaly fine.
full blown version same as above but next morning was never the same, its like it is round the corner 24/7.
the full blown version came about when i started an exercise called dead lifts which really puts pressure on the neck (and i was going real heavy like an idiot).
i have been to many psyiopherapist who are tottally useless and lack so much knowledge. next time i go to my neurologist i will mention this for sure, as alot of my pains are based around the neck area.
i always say if i was the queen of england i would have got rid of this problem long time ago:).
it just seems alot of doctors are drug dealers, butchers or accountants.
ali
I am in a study group right now at Duke to see if abnormal CSF is one of the causes of Meniere's.
It was found that I have low pressure. I've had patches done a couple of times. I had no vertigo and very minor symptoms after the patches, for months. Recently, I've been having a bit of a set back. But I haven't had a full blown Vertigo attack since late January.
They are doing this study on people with Meniere's or Ramsey Hunt Syndrome who don't get better with typical treatment.
I will be having another Lumbar Puncture on the 22nd, to see what is going on. Although I'm not having Vertigo, I am having many more migraines, tinnitus so loud..well I didn't think it was possible to get that loud..luckily it's fluctuating. My hearing has dropped dramatically....
I'm seeing Dr. Kaylie, and Dr. Gray (Linda Gray Leithe) at Duke. We are very optimistic about getting me back to my normal self again.
I know out of all the people they have been treating (should be close to 40 now) Only one hasn't been able to be helped at all. They didn't have low or high pressure. (I should point out that Dr. Gray doesn't go by what should be "normal" pressure numbers. She will add some synthetic CSF or take away some to see if you respond. Empherical testing..what a concept)
I could go on and on...but it's all on my blog if you are interested.
My leaks were around my spinal column. (right now they want to test to see if perhaps my pressure has gone too high after the patches, (I had 8 patches), or if perhaps I had some thin spots that are now leaking.)
If my pressure is low, I'll need another Myelogram to check things out. If it's a bit high, I'll need to medicate the problem until my body gets used to the higher pressure.
Here's a link that shows me getting my first patches http://picnicwithants.wordpress.com/2010/11/27/pictures-taking-during-the-blood-patch-for-csf-leak/
here's a post in part of a series I did about different Meniere's treatments.
http://picnicwithants.wordpress.com/2011/03/21/treatments-for-menieres-part-4-csf-adjustment/
I think I should point out that I've been told that most of the people with Meniere's tested have high pressure, but there are a handful, like me who have low pressure. (I personally know 3 people who have tested high, 1 with Ramsey Hunt, and 2 with MM.)
Thanks for bringing up this discussion.
I'll be happy to answer any questions you or others may have...If I don't know the answer I'll try to find out.
wendy
Thanks Wendy I appreciate it!
I have prepared a post of 800+ words that I would like to submit but it does not fit into any existing topic. The subject is the treatment of Menières using prism spectacles.
Advice as to how to proceed would be appreciated.
thanks
fp
ps. I chose 'anonymous' because I can't make sense of the other choices!
Wendy, good luck -- I hope you have a great outcome from this study! It's very brave of you to go through all that, but I suppose many Meniere's patients are so anxious for relief they would do almost anything. I know I would.
FP, I'd be interested to see the piece on prism lenses.
Lauri, my ENT said the prism lenses might help me, but when I went to an ophthalmologist, he said it wouldn't help at all and that it might actually make me worse. Of course, when I saw him, I didn't have any nystagmus because I was on steady doses of valium. I wonder if he would feel differently now that I have chronic low-level nystagmus.
God, I'm so sick of Meniere's.
Peggy~
Once I adjusted to them the prism lenses sharpened my sight, also resulted in less headache..however the down side was that I had to switch to readers for up close reading, or remove them & use nothing for far distance.
The constant changes of removing the glasses, or switching to readers often caused feelings of dizziness.
Really got tricky when driving, so I mostly wore them in the house.
You're kind of between a rock and a hard place.
I know what you mean...I'm sick of Menieres too.
Been fighting that panicky "trapped in a seriously malfunctioning body" feeling lately.
On another note: I have begun my complaint against the ENT specialist I was seeing.
I am in touch with someone in authority at the Hospital.
My Dr.'s latest little game got me denied benefits with DSHS, because he sent in incomplete review paperwork that they require.
I met with DSHS today and told them what was going on.
I should be able to get benefits re-instated, but it might take awhile, so for now I have no medical coverage.
Talk about stress!
It's funny..the old me (pre-Menieres) loved taking on a good battle, but the "now" me has trouble handling it both mentally and physically.
I'm going to need to channel some of the old me while I battle this.
Hopefully I will have spin free days to accomplish what I need to.
None of us should have to deal with this disease, and also battle for help to survive it.
It's just sad.
We are strong people though...especially making it through Menieres!
Kudos to us all!
Funny, what you said about channeling the old you to get through the stuff you need to do. I frequently forget the "new" reality because the "old" me keeps trying to break through. I will start to do something and find out part-way through that it's not going to work. Very, very frustrating.
Your ex-doctor is sounding better all the time. Not. Grrrrrrr......
And yes, I think anyone with Meniere's HAS to be strong. That's the biggest new reality of all. Without strength, I don't think we could get through this.
Yay, us! :)
Peggy,
I'm not really brave going trough this research, it's actually much less painful and has much less recovery time, than some of the other treatments I've had. (I had the endolymphatic sac surgery).
But you are right, I have bilateral Meniere's, it has progressed significantly in the past couple of years, so I would try just about anything to make it better. (and this treatment has made it better. I am having a rough patch right now, but still not having severe vertigo like I was.)
I'm so sorry you are having to deal with no medical coverage, and issues with your ENT.
it's shameful.
good luck to you.
wendy
Prism Lenses and Menières 1/2
[I suspect this comment is too long so I have split it in two].
My feeling ‘unwell’ started seven years ago with a sudden onset of persistent motion sickness. I also experienced many of the classic symptoms already described by various contributors to this site. Here in Belgium, where I live, it is not mandatory to go via a GP to access a specialist, but there are advantages to doing so, so this was where I started. I was sent to an Ear-Nose and Throat (ENT) specialist who did extensive tests and prescribed Betaserc 48mg per day (split into two doses) with Sulpiride (70mg) twice a day. [Sulpiride, I later learned, is prescribed for psychotics to make them feel ‘well’. It made me feel relaxed and calm, but put my brain into a fog and adversely affected my concentration]. Some years into this treatment, I also had some physiotherapy to reset the ‘crystals’ in my ears which brought considerable relief to the constant feeling of motion sickness (albeit attenuated by the medication). This helped - but it was not 100%. The physiotherapy involved Epley manoeuvres used for BPPV (a condition whose symptoms, it seems, are akin to Menières). Finally, at my own initiative, I purchased bright coloured balls and learned to juggle them. This may sound like an unusual pastime, but I was convinced that my eyes and brain were not ‘synchronised’ and contributing to the sensation of instability. So I decided that juggling - which forces hand-eye coordination - could do no harm. Curiously, this helped - though I could barely catch the balls at first. Very quickly, I improved and the slight visual disturbance from which I had suffered for years seemed a little better for an hour or two after doing this. So I made it a daily habit.
After six years on the same medication, it was our village pharmacist who blew a proverbial gasket when he saw me arrive with yet another fistful of prescriptions in hand. He recommended, very strongly, that I change specialist and after cross checking with our GP, this is what I did. [In Belgium, the GP has oversight of all the treatment received from various specialists as this is kept on a secure medical intranet containing patient information with the patient’s agreement]. A little perplexed, I headed for the new ENT specialist at a university hospital. This was the start of my liberation.
Faced by a specialist who listened carefully - and did not laugh when I told her about my juggling - she recommended that I go to the Netherlands and see a balance specialist who provides relief for my symptoms using prism lenses. She explained that balance relies on eyes, ears and muscles and that tackling a balance problem by correcting the eyes has proved effective in some cases. So off we headed 150km north, my husband as courtesy driver.
(more in Prism Lenses and Menières 2/2) - fp
Prism Lenses and Menières 2/2
There I learned that the unusual situation with my eyes aggravates the visual disturbance I experience caused by vestibular asymmetry thanks to Menières. (There are five diopters difference between my eyes i.e. the one eye is very short sighted (-5) and the other is virtually uncorrected which means that they do not move at the same speed across my spectacle lenses which are of different thickness. This makes me feel as if I am likely to fall or that something is moving when it is not - though this sensation only started thanks to Menières). The consultation lasted two hours: I did tests I had never encountered before and was prescribed prism lenses. Not fully understanding how they work, please bear with this certainly unscientific explanation: apparently research has shown that by changing the light refraction using prisms in glasses, this can alleviate motion sickness and the sense of instability experienced by people with vestibular asymmetry. There’s nothing odd-looking about these glasses - they don’t look ‘different’. When I put on these new lenses for the first time, it felt as if an invisible wire above my head was pulled tight and forced my head to the upright position. It was rather bizarre - and quite uncomfortable for the first six weeks with these new lenses. But after this - I threw the medicine away, and suddenly I came out of the fog: my concentration was back, my sense of spatial awareness returned. I no longer felt as if I would fall if I did not take extreme care walking down stairs nor did I waver when rising to make presentations nor did I feel disoriented after long flights. In short, I felt human.
What’s encouraging about this treatment is that even though I still have Menières - the prism glasses do not ‘cure’ anything - this treatment has attenuated the symptoms and allowed me to feel OK. It’s expensive in that I had to convert computer/reading and distance specs to include prism correction (variable focal lenses are of limited benefit with my eyes) - but this is an inconvenience I can live with.
Unfortunately, most European material I have found relating to this kind of therapy is not in English . I have found one article (questionably) translated into English from Dutch at http://pierremarie.gagey.perso.sfr.fr/Utermohlen-a.html. The key words to search for are Utermohlen/prism/Menièr - and perhaps some web translator can do the rest from Dutch or whatever to English.
best wishes
fp
FP - thanks for this. You've encouraged me to try a different ophthalmologist and see what s/he says to the idea of prism lenses. My ENT specialist thought they would help, and she definitely believes that addressing my vision in some way would make a big difference. But the two ophthalmologists I've seen have shrugged it off.
I'm thinking I might need to see at least one more serious eye doctor and keep pushing this.
Your use of juggling is fascinating: When I was doing vestibular rehabilitative physical therapy, one of the exercises was definitely a very simplified form of juggling. I'm going to start doing that at home every day. Maybe I'll do it long enough to start real juggling. ;-)
Thanks for the post.
FP,
Your story is really fascinating. I too have had eye problems (cataract surgery in 2008 and glaucoma) so it is of interest to me about the connections between meniere's and vision. The prism lens is also interesting although a little strange.
I'll mention your comment in an upcoming post
thanks again
David
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