Possible Treatment

[Tyler Huggins]

My young son (8-9yrs old) seems to have this condition. Thus far, his last two episodes seem to have been solved almost immediately, by using my oxygen mask with my oxygen tank that I have to treat my Cluster Headaches.

Since this is a relatively unknown treatment for Cluster Headaches (which is a fairly uncommon condition), I am thinking that not many people have thought of trying this for AIWS.  But is is very safe and natural and affordable, and was in fact the ONLY thing that ever worked for my Cluster Headaches - not $35 pills, not any number of other things that I tried. 

Please try oxygen in your next episode of AIWS, and let me know if it helps you or your child.

[Judy Elliott]

It's interesting that you've tried oxygen and it has worked. I read some papers a few years ago on hyperbaric oxygen chambers being of help with some neurological disorders. I ordered a small can of oxygen off Amazon and tried breathing it in, but perhaps unsurprisingly, this didn't work.

Really need to try it with some proper equipment. Sounds like you have been trying the real thing. How do you get an oxygen tank and mask. Is it something you get through your local hospital and do you need a letter from a neurologist?

Anyway - glad it's helped with your son.

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[D]

I started with this syndrome over a year ago. I have multiple episodes daily and I'm a mature adult. I've been told nothing can be done. Is this right.

[Tyler Huggins]

When I first heard about oxygen as a potential treatment for cluster headaches, it was quite difficult to get. You had to have a prescription from a specialist, and then the fire department visit your home and ensure it was safe. I never got any until a few years later, when it became easier. I just looked up “medical oxygen tank supplier” or something, called them, and they told me how to pick one up. Local laws will dictate.

[Judy Elliott]

Just replying to Bobby, who has "multiple episodes daily" and has been told that "nothing can be done". As far as the multiple episodes are concerned, I'm having an even worse time with my AIWS, as it has been permanent since 2003. Looks like we are in the same boat of having a level of AIWS which has quite a bad impact on our daily lives.

The official line from doctors seems to be "can't do anything and can't be bothered to try and find out". They seem to think that AIWS is a rare condition and that people normally have just a few visual disturbances, which they need to learn to live with. This AIWS Groups site is really important, because it shows that it is actually a reasonably common condition and is affecting a lot of people. Also, there are people like Bobby and me, where the AIWS is very frequent, or else permanent. I did once come across a man on a thread on another AIWS website, who said he had been putting up with permanent AIWS for the past 30 years.

It would be good if the doctors and researchers would do a bit more research. What they do know is that AIWS involves a lack of oxygen flow to certain areas of the visual cortex involved with the processing of visuo-spatial information. It seems to me that it would be worth investigating what is causing the lack of oxygen. We know that arteries are becoming blocked for heart conditions and strokes, so is this part of what is happening in AIWS? I have recently been for a health check and was told that my cholesterol is too high. The reading for cholesterol was 7.1 and it should be 5. There was also an abnormality with the ratio of HDL (good cholesterol) to LDL (bad cholesterol). The reading for that 7.1 and it should be 5.1. I've been told to stop eating chocolates and crisps, reduce saturated fats and sugars in my diet and keep red meat to two servings per week. Also been told to do more exercise. My blood pressure, BMI and creatine level were all fine, but I've been advised to try and get my weight as good as possible and exercise most days. I've been told I have a 7.4% overall risk for heart attack or stroke and the normal age for my age group is 6.7%.

I was only given this information a couple of weeks ago, but I'm trying to improve a bit. Found some prawns I like at Marks and Spencers, so I'm having smokey prawns and salad quite a lot instead of meat. It's very hard for me to give up on chocolate and crisps, as I was eating them most days, but I've tried eating things like grapes and slices of watermelon instead.

With the AIWS, it's probably not just the cholesterol. I've had AIWS for years, and it was there even when my cholesterol level was good. When I was young I used to have chronic migraine and migraine involves a lot of expanding and constricting of blood vessels. I suppose, since the AIWS for me is permanent, it may be that some of the blood vessels supplying the back of the brain may have collapsed, or else have become quite blocked.

I'm on an IT course at the moment and that involves a lot of sitting at the computer. Of course, it's Saturday now and what am I doing ... you get the gist! Think I'd better get myself a new pair of trainers and try a bit of jogging by the side of the local river. The NHS do a useful podcast called "Couch to 5K" which is supposed to help you to increase your running in stages, so I might have a go at that. I haven't been to the gym for ages, but might give it a try.

I think for all of us, it might help to orient to the kind of diet and exercise which is going to help with good blood flow to the brain. The oxygen also sounds a good possibility, but maybe we all need to look at our personal medical history and try to work out why there might be poor blood flow to the visuo-spatial processing areas in the brain.

We need to get some relevant people interested and on our side, so maybe we should get together a list of experts in relevant areas, including migraine and AIWS. I have collected quite a lot of articles on AIWS and on diet and health issues in general, so I probably already have some relevant names. I'll have a look later on and post back on this.

Anyway, I'm off to the cinema to see the new Fantastic Beasts film this afternoon. Sigh ... yet more sitting! 😇

[Call Me Bronco]

sorry my message ended up being very long again..
If you are suffering seriously because of this; never give up on trying to find a doctor to help you. There are doctors who care out there. If I were you I would try to get CAT scans or MRIs or similar tests; and get one during an episode; even if you have to bring it on intentionally which you may not enjoy or is scary but it may be the only way they can detect anything going on in the brain.

How much sleep do you get? For myself; not just with AIWS but my whole health in general; has taken a steep decline since I got my current job 4 years ago and I've been getting much less sleep since then. My episodes come on most often with lack of sleep. Getting 7-8 hours of sleep every single night is a LOT more important than most people realize.

"I've been told I have a 7.4% overall risk for heart attack or stroke and the normal age for my age group is 6.7%."

Personally I would not worry about a less than 1% difference in something like this. I've talked to doctors who've said essentially 'a number like that doesn't make any difference'. And worrying too much is not good for your health either :)

When I was having my month long migraine episodes I tried different diets and vitamin pills. I did indeed get less exercise this year than most because of the weather. But none of these things seemed to do anything; it went away on it's own. I really am not certain what brought it on or why it went away. Only two major (and pretty major by my standards) events happened around this time to me;
1) I started meditating prior to the episodes. I don't have room here to go into details but it was at times a shocking and scary experience.
2) My father had to go to the hospital three times and almost died; needless to say, was a pretty traumatic experience. This however; happened *after* I started getting the migraines. I could go into more detail here but I fear I will sound like a crazy person.
The point is I really don't know why I started getting the migraines or why they stopped. And I don't know why I get AIWS or exactly what connection it has with migraines but it definitely has some connection as it worsened during my migraines.

I'm starting to develop a theory about exactly what causes my condition to a lesser extent; I get the mild effects (not an intense episodes) when I'm partially or mildly focused on something. Like if I'm staring my PC screen but aware I'm staring. While if I'm relaxed and looking around, not focused; or intensely focused so as to forget where I am (like fully involved, playing a video game or typing and fully 'into' what I'm typing about. There's a definite difference in cognitive state here; at least for me. And if I think about it it is at times very hard to control. If I'm worrying about getting AIWS (mild case) it comes on. But an intense case never comes on that way. Intense episodes for me seem to be random or usually only in total darkness.

[D]