Long Duration AIWS?

[Jacob Thomas]

I'm wondering if anyone has any experience of long duration AIWS? Before the symptoms kick in, I get this feeling in my eyes, as though they're hugely strained, whenever this happens, I know it'll only be a few minutes before the full symptoms arrive. Over the past few weeks I've been getting episodes more and more frequently of late. Yesterday I felt my eyes start to strain, then the symptoms occurred, now, 24 hours later, I'm still having the traditional AIWS symptoms, sense of scale and perception is still off, and my eyes feel like they're heavy and strained. I got a decent nights sleep last night, and then a nap today, and still it persists. Has anyone had an episode go on this long before? Also does anyone have any tips on how to try and dispel it? 

[Rik Hemsley]

Hi Jacob, welcome.

Yes I used to get AIWS pretty much permanently.

I found that using standard migraine-avoidance techniques worked for me, eventually. Good diet, proper sleep (not too much, not too little, no naps(!)), no chocolate, strong cheese, red wine or black coffee.

On Sat, 20 Feb 2016 at 19:44 Jacob Thomas <geh...@gmail.com> wrote:

I'm wondering if anyone has any experience of long duration AIWS? Before the symptoms kick in, I get this feeling in my eyes, as though they're hugely strained, whenever this happens, I know it'll only be a few minutes before the full symptoms arrive. Over the past few weeks I've been getting episodes more and more frequently of late. Yesterday I felt my eyes start to strain, then the symptoms occurred, now, 24 hours later, I'm still having the traditional AIWS symptoms, sense of scale and perception is still off, and my eyes feel like they're heavy and strained. I got a decent nights sleep last night, and then a nap today, and still it persists. Has anyone had an episode go on this long before? Also does anyone have any tips on how to try and dispel it? 

--
You received this message because you are subscribed to the Google Groups "Alice in Wonderland Syndrome" group.
To unsubscribe from this group and stop receiving emails from it, send an email to alice-in-wonderland-...@googlegroups.com.
To post to this group, send email to alice-in-wonde...@googlegroups.com.
Visit this group at https://groups.google.com/group/alice-in-wonderland-syndrome.
For more options, visit https://groups.google.com/d/optout.

[lily richards]

Longest time it's lasted for me was a month or so. I've made a documentary about it here https://www.youtube.com/watch?v=CDAHdTHCkck

Haven't yet found any permanent way of stopping it only ways of coping with it!

Hope you're alright, I know how unnerving it can be when it doesn't stop for ages x

[Judy Elliott]

Re:  Long Duration AIWS

Hi Jacob. Rik and Lily.  I think I have probably had AIWS longer than most people on this forum because I've had it intermittently for about 40 years and permanently on a 24/7 basis since 2003, so about 13 years.  I have a long history of chronic migraine which is triggered entirely by food intolerances.  I must have a pretty strong hunter-gatherer ancestry, because I turned out to be reacting to gluten grains (wheat, rye, barley), various non-gluten grains, including corn, rice, millet, buckwheat and sorghum, to lactose containing milk and lactose-containing cheeses, to seed oils such as sunflower oil and to soya and soya products.  There were also a few triggers more specific to migraine, such as oranges, nitrates and sulphites. Nowadays I keep well away from any processed foods and only eat natural foods (i.e.  a Paleo style of diet).  I am able to tolerate both oats and wild rice, providing they are in small quantities and I can tolerate lactose free milk and dairy products.  That would include normal mature cheeses like mature Cheddar, Brie and Edam, which are low in lactose.

I would like to tell you that my diet has cured my AIWS, but unfortunately this is not the case.  Elimination diets and Paleo worked wonders for a large number of problems - (migraine, IBS, brain fog, fibromyalgia and arthritis) and I have also used various strategies for control of blood sugar which has helped with my somnolence symptoms and rebound insomnia, but the AIWS has remained stubbornly fixed.  I gather AIWS is due to hypoperfusion  i.e.  lack of blood flow/oxygen to the brain, so in my case it is probably the result of a lot of cortical spreading depression - the kind of aura which accompanies migraine, which tends to cause a lack of oxygen.  I was interested to read a recent post by someone reporting that they have noticed pizzas and cheese as an AIWS trigger and that the reaction caused a fall in blood pressure, which supports my idea that neolithic and modern processed foods may be a problem.

I did go to Sheffield Hallam Hospital in the UK to see Dr Marios Hadjivassiliou who specialises in gluten sensitivity.  I wanted to have a SPECT scan to check on what was happening with the blood flow to the visual area of my brain. Unfortunately, I was only given an MRI scan and that proved negative.  Dr Hadjivassiliou did examine me and thought there were signs of lack of coordination characteristic of gluten ataxia, so maybe gluten has been doing some kind of damage to blood vessels or nerves leading to the visuo-spatial processing areas in the brain.  If so, there must be some kind of permanent blockage or damage in my case, because the AIWS is there all the time.

I gather the main areas of the brain which are affected in AIWS are Brodman's areas 18, 19, 39 and 40 in the visual cortex and there might also be some involvement from Brodman's area 7.  The papers I have looked at mention these areas and also refer to the cingulate gyrus, caudate nucleus and putamen.

The only test result I have had which has been strongly positive has been a hydrogen breath test which indicated fructose malabsorption.  This is linked to my IBS and I'm waiting to get two more hydrogen breath tests (glucose and lactose malabsorption this time) which will help me to find whether or not I have SIBO. IBS mechanisms are being implicated in non-coeliac gluten sensitivity and non-coeliac gluten sensitivity is linked with both migraine and fibromyalgia, so there are various factors which seem to fit. There are theories that for some people with food intolerance both wheat and milk may be causing inflammation which is affecting the nerve fibres leading from the gut to the brain.

There tends to be a stress component to migraine and IBS, so I have tried yoga and had some counselling.  This has probably made me feel a bit more relaxed, but doesn't seem to have had any impact on my symptoms.  There is a rationale for carrying on with yoga etc., because stress can cause gut dysmotility and this could cause malabsorption problems.

As other people have said, it is frustrating that when you talk with people they pick up on there being something wrong, but aren't aware you are having to cope with such a lot of visual distortion.  I have the whole thing:  micropsia, macropsia, pelopsia and teleopsia, together with occasional metamorphosia.  I've only had time distortion once, when I was under a lot of stress, but interestingly time perception is controlled by the cerebellum and Dr Hadjivassiliou said that it is the cerebellum which is often the first part of the brain to be affected in gluten sensitivity.  I don't think I'm Coeliac because my biopsy was negative, but at the time I had it I had already been gluten-free for about two years.  The only other migraine variant I've had has been auditory aura (sound becoming louder then quieter, or stopping all together) and this has happened on only two occasions.

At present, I'm trying to add in some exercise, particularly cardio machines at the gym, in the hope that generally boosting my circulation might help.  Gluten causes inflammation and I do remember someone on this forum mentioned she'd found some Ayurvedic herbs which helped, so maybe they calmed the inflammation down.  My problems unfortunately continue, but hopefully some of this is on the right track.

Anyway, it might be worth checking for food intolerances or else just trying a Paleo diet for a time.

Hope this is of some help

Judy

 

--

[jjwy...@gmail.com]

Hello :),
My Name is Nadine.
I have linked to this group through my husbands email.
I have had "Alice" as I call it ever since I was a young child!
My father has it as well and never discussed it.
I have had it come on and last for about a month!
This happened when I was under stress.
I don't really suffer any anxiety, however when under stress it manifested into Alice.
During the month it was constant and I heard voices, saw things that were not there and was at a point where I though I had lost my mind and was in a different world!
I had the feeling of something crawling in my brain.
At one point I lost the full mobility of my left hand side.
I ended up having 3 months off work to deal with it!
I was originally told it was anxiety, then I was given brain scans where they found I had right temporal lob epilepsy and I was referred to Geoffry Boyce a neurologist.
He informed me I was not crazy, out me on a constant script of beta blockers and told me to have Panadol if I felt it coming.
I eliminated the stress and then it went away.
However, it was so scary at times I though of suicide and had a man telling me it was my only escape.
The nurologist said I have had "Alice " for my whole life and all the funny things as kids was it.
He said the temporal lobe epilepsy causes it for me and that the prolonged and very scary type I was suffering was it in combination with a migraine.
He said I would have to live with the "Alice" but the scary migraine that gets it going to new levels was treatable with beta blockers.
I have since gone off them, continue to get normal Alice at night or here and there but no crazy scary things!
Until just recently, I had my second child and have got a chest infection and it is back with force and I am not coping.
Thus why I have reached out to this group to not feel so along.

[Judy]

Thus why I have reached out to this group to not feel so alone.

Hi Nadine

I realise you posted this some time ago, so I hope you are beginning to find things are improving now.  

I thought it might be helpful to mention that when there have been studies investigating hearing voices, it turns out that it's just your own voice, but one of the connections in the brain has been disrupted, so you don't perceive the voice to be your own subvocal speech.  The voices still activate the vocal chords, but there is no sound.  However in studies they have amplified the sound and found that the voices can be heard.  It's the same kind of voice we use when we do things like rehearse directions - basically the voice we use for thinking. Thought if you knew this, the voices would be less scary for you.  

There was a study by Egger et al which they reported in the Lancet in 1983 which linked migraine to food intolerance.  I'll copy the abstract below.  (By the way, the procedure they refer to is just a standard elimination diet)::

Lancet. 1983 Oct 15;2(8355):865-9.
Is migraine food allergy? A double-blind controlled trial of oligoantigenic diet treatment.
Egger J, Carter CM, Wilson J, Turner MW, Soothill JF.
Abstract

93% of 88 children with severe frequent migraine recovered on oligoantigenic diets; the causative foods were identified by sequential reintroduction, and the role of the foods provoking migraine was established by a double-blind controlled trial in 40 of the children. Most patients responded to several foods. Many foods were involved, suggesting an allergic rather than an idiosyncratic (metabolic) pathogenesis. Associated symptoms which improved in addition to headache included abdominal pain, behaviour disorder, fits, asthma, and eczema. In most of the patients in whom migraine was provoked by non-specific factors, such as blows to the head, exercise, and flashing lights, this provocation no longer occurred while they were on the diet.

The same researchers found that when they rectified the migraine through eliminating certain foods, some children were also helped to overcome their epilepsy.  I'll copy that study too:

J Pediatr. 1989 Jan;114(1):51-8.

Oligoantigenic diet treatment of children with epilepsy and migraine.

Egger J1, Carter CM, Soothill JF, Wilson J.

Abstract

We studied the role of oligoantigenic diets in 63 children with epilepsy; 45 children had epilepsy with migraine, hyperkinetic behavior, or both, and 18 had epilepsy alone. Of the 45 children who had epilepsy with recurrent headaches, abdominal symptoms, or hyperkinetic behavior, 25 ceased to have seizures and 11 had fewer seizures during diet therapy. Headaches, abdominal pains, and hyperkinetic behavior ceased in all those whose seizures ceased, and in some of those whose seizures did not cease. Foods provoking symptoms were identified by systematic reintroduction of foods, one by one; symptoms recurred with 42 foods, and seizures recurred with 31; most children reacted to several foods. Of 24 children with generalized epilepsy, 18 recovered or improved (including 4 of 7 with myoclonic seizures and all with petit mal), as did 18 of 21 children with partial epilepsy. In double-blind, placebo-controlled provocation studies, symptoms recurred in 15 of 16 children, including seizures in eight; none recurred when placebo was given. Eighteen other children, who had epilepsy alone, were similarly treated with an oligoantigenic diet; none improved.

As I've posted before, my own migraine and migraine vertigo, IBS, fibromyalgia and arthritis turned out to be due to food intolerance - particularly problems with grains and dairy and I've had somnolence (falling asleep after eating) which mainly happens when I've had too much sugar or carbohydrate.  I've also had migraine-related Wernicke's aphasia (where I can see people talking but can't understand what they are saying) after eating high glycaemic foods such as fudge and rice. Foggy thinking turned out to be due to difficulties processing lactose, so I tend to keep to lactose-free milk and mature cheeses low in lactose.

As you have epilepsy and migraine together, it seems quite possible that both might be helped if you do an elimination diet, or you might strike lucky by starting a Paleo Diet and temporarily eliminating Neolithic foods (i.e.  grains and dairy).  I've done two elimination diets in the past and I've also been on Paleo and then tried reintroducing certain foods.  In my case, I've done really well reintroducing oats and wild rice, but everyone is different with this because it depends on your ancestry.  Some people on Paleo have difficulty tolerating any grains at all, and it's not just gluten grains.  For instance corn is a grain which tends to give a lot of people trouble.

Anyway, this might be worth following up on to see if it helps with the migraine and epilepsy.  Unfortunately, I have had no luck getting rid of my AIWS and have now had it permanently since 2003.  It's definitely linked with migraine, because I used to get bouts of AIWS with the worst migraine attacks.  The Epstein Barr virus is a common cause of AIWS. which is a form of herpes virus - the same virus which gives us cold sores.  I do know I have some form of herpes in my system, because the doctor once told me a rash on my arm was due to herpes.  

It would be a dream for me to get rid of the AIWS and see things normally again, but nothing seems to work.  I've tried eliminating foods, lowering my sugar intake, doing exercise and doing yoga (for relaxation); also a drug for migraine and epilepsy (sodium valproate).  Sodium valproate did help someone with AIWS in this study:

BMC Neurol. 2010 Jan 6;10:2. doi: 10.1186/1471-2377-10-2.

A migraine variant with abdominal colic and Alice in Wonderland syndrome: a case report and review.

Hamed SA1.

Abstract

BACKGROUND:

Abdominal migraine is a commonly described migraine variant in children and young adults, but associations with Alice in Wonderland syndrome and lilliputian hallucinations are exceptional.

CASE PRESENTATION:

A 20 years-old male experienced frequent and prolonged attacks of abdominal colic associated with autonomic manifestations started at the age of ten. At the age of 17, he additionally described prolonged attacks (>or= 7 days) of distortions of shape, size or position of objects or subjects. He said "Quite suddenly, objects appear small and distant (teliopsia) or large and close (peliopsia). I feel as I am getting shorter and smaller "shrinking" and also the size of persons are not longer than my index finger (a lilliputian proportion). Sometimes I see the blind in the window or the television getting up and down, or my leg or arm is swinging. I may hear the voices of people quite loud and close or faint and far. Occasionally, I experience attacks of migrainous headache associated with eye redness, flashes of lights and a feeling of giddiness. I am always conscious to the intangible changes in myself and my environment". There is a strong family history of common migraine. Clinical examination, brain-MRI and EEG were normal. Transcranial magnetic stimulation and evoked potentials revealed enhanced cortical excitability in multiple brain regions. Treatment with valproate resulted in marked improvement of all clinical and neurophysiological abnormalities.

CONCLUSIONS:

The association between the two migraine variants (abdominal migraine and Alice in Wonderland Syndrome) might have clinical, pathophysiological and management implications. I think this is the first description in the literature.

You mention a stress/anxiety connection and I think it's worth mentioning that stress has been found to be associated with raised intestinal permeability.  There is a specialist in Coeliac Disease and gluten sensitivity (Dr Alessio Fasano) who is investigating how intestinal permeability is also being caused by wheat gluten and he's looking into possible gluten links with schizophrenia.  The theory behind all this is the leaky gut hypothesis (the idea that harmful food peptides such as opiates and some antibody complexes and bacteria can cross the gut barrier and cause inflammatory effects for the brain.

I think these possible food links are relevant to everyone in AIWS groups, but possibly particularly people whose AIWS is related to migraine or epilepsy.  My own AIWS became permanent at a time of great stress and my original allergy consultant thought that I had a problem with intestinal permeability.  The only relevant test result I have at present is a hydrogen breath test which showed that I had strong malabsorption problems with fructose.  Fructose malabsorption is also common in IBS.

Anyway -  I hope this is of some help.  Let me know if you think problems with gluten, grains, refined carbohydrate, sugars and lactose might be worth investigating. If there is anyone else out there who is interested in possible mechanisms behind the AIWS can they get back to me on this.  I'd like to have a talk with anyone who has been doing their own investigations.  I've collected a lot of relevant abstracts and articles, but as I say, no luck in shifting the AIWS at present.

Judy