HANDl Syndrome? IIH - Recovery

Hello All,

You've helped me so much before - and I'm desperately hoping you'll be able to again. Sorry for the long story and if some of it's irrelevant!

Not sure where to start the story - essentially, in the past, ~15 years ago I had around 5 years of horrific back pain, discovered Sarno/TMS and dealt with it. Have had some bouts since but have been able to deal with it by revisiting his work, particularly Healing Back Pain, and discovering the wonderful Dan Buglio's videos on YouTube. Absolutely love him!

I've also had a lot of counselling over the last few years and I believe have uncovered the route of all of the issues I've had (going back to my time at school) and as a result have got to a much happier place.

By March 2024 I was the fittest and happiest I'd every been, running marathons etc. I was on holiday with my family in Cyprus at Easter in the middle of April when I started getting migraines. Now, I'd never really had migraines before, but I knew that's what it was, as the headaches were so bad that I was getting visual symptoms and being sick. This lasted for the last couple of days of the holiday and I felt rotten on the plane home, but managed to go back to work for a couple of days before going to see my GP as the severe headaches continued.

The GP referred me to the Ophthalmologist who saw some minor anomalies, including some slightly raised eye pressure and a tiny bit of ocular bleeding, but sent me home with some painkillers. Anyway, the headaches continued and I ended up in A&E (ER) a few days later hallucinating and almost continuously vomiting with unimaginable headaches. I ended up in hospital for several weeks and almost losing my eyesight and being diagnosed with HaNDL syndrome (after testing for meningitis, hepatitis and various other things), which they believed to have been caused by an unknown virus (due to high white blood cell count) - though I'm not sure if stress couldn't have been a factor. I ended up essentially being sectioned because I didn't know who I was, where I was, tried to escape the hospital, believed I was covered in animatronic insects, and all sorts. Not a good experience!

Anyway, in the end it was worked out that this was all due to extremely high intracranial pressure and I had two lumbar punctures and was on a high dose of acetazolamide for several months to get the pressure down. I came off this in September and the headaches came back a little then went away again.

Now for the last month or so I've had awful headaches again and my neurologist has prescribed me topiramate for the headaches but I've not actually seen him / spoken to him since early November! Sometimes it's a dull headache, sometimes my eyes hurt, sometimes it's a stabbing pain, sometimes my head feels like it's full of cotton wool. I saw the ophthalmologist a couple of weeks ago, though, and had all sorts of tests and he said everything looks great - not signs of any elevated pressure or eye abnormalities.

So what I guess I want to know is... is this TMS? I was just getting to the point where I could write everything off happily as TMS but now I've actually been seriously ill, it's harder to be sure. How can I be sure either way? I know there have been other people on here diagnosed with IIH and as far as I can tell HaNDL is very similar.

Thank you so much in advance you wonderful people!

 

What a story! It sounds like you've been through a lot, especially with the HaNDL diagnosis and hospitalization. It's completely understandable that you're feeling confused about whether this is TMS or something else. Here's my take, based on my understanding of TMS and your history:

The TMS pattern is there: you have successfully used the TMS approach before, and you've identified underlying emotional issues. That's a strong indicator that TMS could be at play.
The headaches are variable: You describe different types of headaches – dull, stabbing, eye pain, feeling like cotton wool. This variability is very common with TMS. When there's structural damage, the pain is often more consistent.
The ophthalmologist's report: The fact that your eyes look good and there are no signs of elevated pressure is reassuring. It suggests that the headaches might not be related to any physical problem.
Stress as a factor: You mentioned that stress might have been a factor in the HaNDL syndrome. If stress can contribute to a serious condition like that, it can certainly contribute to headaches.

So, how can you be sure? It's tough, but here's what I would suggest:

• Revisit the TMS principles: Go back to Dr. Sarno's work and Dan Buglio's videos. Remind yourself of the emotional issues that you've identified and see if they resonate with what you're experiencing now.
• Journaling: Start journaling about your emotions and thoughts, especially when you're experiencing the headaches. See if you can find any connections.
• Mindfulness and relaxation: Practice mindfulness and relaxation techniques to calm your nervous system. This can help reduce the intensity of the headaches and give you more clarity.
• Talk to a TMS-knowledgeable therapist: If possible, find a therapist who understands TMS and can help you explore the emotional factors that might be contributing to your headaches (Sirpa may be helpful?)

Finally, it's up to you to decide whether this is TMS or not. But based on what you've shared, I think it's worth exploring the possibility that TMS is playing a role. Do not dismiss it just because you've been seriously ill.

 

This whole episode has all the hallmarks of TMS. You were on holiday with family. How was that going? Did one or more things really anger, sadden, or disappoint you that may have escaped your conscious attention? How do you feel about your family? This lasted for the last couple of days of the holiday. I don't believe that's a coincidence. How did you feel about going back to work? How do you feel about your work in general?

The work-up you had sounds quite amazing. Overall it would have been cheaper to let you have another 6 months of vacation, I mean the cost savings to the overall economy. That's a digression however.

In all seriousness, the more I study this, the more I'm convinced that everything is TMS. That isn't to say that some of the more severe symptoms can't cause permanent harm to the tissues of the body or even death. Asthma is TMS and so are allergies, but when those things are severe, people can die of them. Every health problem is a mindbody health problem, because human beings are never just a body. I recommended a book on the general Forum a few days ago, by Brian broom in New Zealand. For some reason it's very expensive on amazon. Nevertheless if you can find some way to get that book it has a good way of explaining this.

The brain controls the entire immune system, I say "control" for lack of a better word. The brain can produce any symptom at all anywhere in the body, including any immunological symptom, or a symptom caused by the absence of an immune response (like a tumor for example). It is just a matter of intensity of the symptom that is required for a distraction, and/or what is the level of fear. How much control we have over the big symptoms is an open question, but it's probably a lot. I gather that Jan for example healed her RA with her mind/brain with a little help from the medical system when needed. She did a podcast with Nicole Sachs on June 7th, 2024. Worth listening to.

 

Firstly, thank you @ChronicVince for your kind words, those are really useful tips and have helped to ground me.

@clarinetpath very interesting thank you - it had crossed my mined that the whole thing could possibly have been TMS but I had brushed off this thought. As I say, I was in a much happier place than I had been after years of psychopathic and micro-managing bosses. I am finally in a job with people that I like and who encourage me to be my best. I am working from home, which I think suits me (despite the fact that I keep reading how bad it is for your mental health etc.)

Interesting what you say about the work up I had - that's the NHS for you - I hate to think what would have happened in the US.

It was a good holiday in Cyprus - it was booked at the last minute and we couldn't really afford it admittedly. There were a lot of cats around the poo though and a couple of weeks before hand I had managed to get cat sh* t in my eyes when mowing the lawn at home so I had put it down to one of those two giving me an infection. The first sign that anything was wrong was that whenever I tried to go for a run I felt absolutely exhausted after about a mile and had to give up, which was like me at all. My wife reckoned I just had heat stroke - but I'd run in similarly hot weather plenty of times before.

But there was one thing that really did absolutely fill me with rage on holiday... and I'm sure it sounds ridiculous. My 4 year old daughter was an absolute living nightmare every mealtime. Huge amounts of screaming. It was an massive fight every time, even though we tried to just let her have her way. She insisted on having 30 chicken nuggets on one plate, and about a litre of ketchup on another plate, every meal then refused to eat anything. She insisted on running around with her shoes off, and the waiter reprimanded me - but there was nothing I could do. This combined with extreme tiredness (she barely slept from birth until the last couple of months)... I found it all very embarrassing at the time. All this is much better now.

We were lucky enough (and I was just about well enough) to be able to go on holiday again in August and all had a good time.

 

Oh my friend, it's not ridiculous at all. Those things with your 4-year-old daughter are absolutely enraging. I shudder to think what I would have done. At this point, I would have just taken a flight back home that same evening. The screaming, the obstinacy, and to top it off with having to face public shame and disapproval from that waiter? That's a nightmare. And you felt responsible for it all.

When you mentioned that you read about what "they" say about working from home and mental health, that's a subtle example of the nocebo effect. Nocebo means "I will cause harm." "They" just want to force external control over people, which is basically a way for those giving orders to try to control their own terrifying internal world.

I think you took particular note of these cat crap incidents. You were afraid of those things, and your mind latched on to them, even if they fell below your conscious awareness. Think back to everything you've ever read or heard about the "dangerous" or "infectious" germs carried in cat feces. Don't read anymore about them! You've probably read more than enough already. The choice of symptom manifestation was no accident. Your brain was just keeping it in store for when the necessity arose. Whether there was an actual pathogen or not doesn't even matter. The brain could produce the symptoms regardless.

 

“We could barely afford it”
This is probably stressor #2, stressor #1 may have been booking on short notice (if that impacts personality traits), daughter may have been icing on the cake.
Triggers are often unconscious, as @ChronicVince points out, but your vacation may have had a few build up. I remember Dr. Schubiner stating that some of his clients tend to have symptoms on holiday.
I think your TMS just chose a new way to speak to you.

 

Also good points! I'm dyspraxic - and though it doesn't affect me anything like as much as it did when I was a kid, when things change at short notice it really messes me up. Even something small. And trying to organise anything is also very stressful - I'm fine once I get on holiday (usually) but getting to that point can be hard, what with the early morning flights and the passports and tickets and so on.

I would really quite like TMS to stop finding new ways to speak to me!

 

I feel like I should now add that I had a severe bout of sciatica in September which I'm only just recovering from, and some stomach, chest pain and neck pain more recently. Haha. It's almost like I'd forgotten about TMS.

 

Dyspraxia, another nocebo. I'm sure you're very graceful at many things.

Don't underestimate the pressures of the years of responsibility. Like the great doctor said, your brain is trying to do you a favor. It's doing the best it can to help you cope. Who gets tms? Good people.

 

Well that's the biggest stressor (thank you for this counselling by the way!) I've been been worried about being the main wage earner for along time and what would happen if I lost my job!

I have a GP appointment tomorrow, which I booked weeks ago. Primarily to discuss the topiramate (which I decided to stop taking on Saturday) and maybe ask for some blood tests just to see if there was any evidence of anything else going on. Am thinking I should probably just cancel it now.

 

I've been been worried about being the main wage earner for along time and what would happen if I lost my job!

That's a huge pressure, I know because I've had something similar for a while too. I have a son who's seven.

Keep it! Despite the truth of what I have said, this is only a random internet forum. I sense doubt in you as well. Practically, it's impossible to advise anyone what action to take in daily life. Learning and understanding are harmless. Like I mentioned though, acknowledging that any medical problem (excepting things like trauma from a car crash or a chemical plant explosion, a fire, etc) is a mindbody effect is not the same thing as saying that it is necessarily harmless. Some of them may be fatal, like tumors, a ruptured aneurysm, on and on. I'm sure that's controversial, even here. It's always wise to rule out anything acutely life-threatening, whatever its ultimate cause. Any labels or prognostication that is given could certainly be considered in light of whether it is a placebo or a nocebo, or neutral. I wonder if they have a TMS physician in the UK, that might be helpful. Good luck.

 

I think you can soften those kinds of triggers with TMS work. It doesn't mean they won't happen, but the key is to keep the symptoms from keeping you doing all the things you love and living life.

Look into your dyspraxia too, emotionally. See what comes up from you as that kid when it affected you more. That might feed into the organizing (feeling of control - I mean you couldn't control your body and your motor planning, so the idea of control might be a trigger in itself). By this I mean don't dig around with a 10 foot pole, but just picture yourself as a kid and how that felt. I relate to this because I have learning disabilities that were never diagnosed and back in the early 70's were blamed on stupidity even though I have a pretty high IQ. Knowing you are smart and or capable but being "told" in some way that you are not is unbelievably enraging. It STILL enrages me to this day although I know it the second it comes up now. These things have a way of spreading through our lives like sticky syrup and cling to everything, but it once you notice it, and notice how these emotions have followed areas of your life, the reaction you have to them seems to really dissipate and they are so much easier to feel.

I know you want TMS to stop "Speaking" to you, but where would you be without it. People who don't learn what TMS is and respond to it's call end up suffering dearly, mentally and physically without end. It's frustrating, it can suck but you are able to live life most of the time because you are listening. Keep listening!

 

This reminds me of my relative's story. She developed some very odd eye symptoms after a trip with her parents. After some workup, she was given the diagnosis of an unusual eye ulcer from some unknown virus or infection. The doctor indicated weakend immunity as a potential cause. In other words, nobody really knew.

Initially when I talked to her, the trip sounded fine. Her parents used to have a lot of conflicts with her over the years and appeared to be OK this time. After her parents left her house, she finally admitted that was not a good trip and their stay generated a lot of tension, the same old stuff.

There may be a group of people whose brains like to appease the situations, making things look OK on surface and maybe trying to stuff the rage and other difficult emotions deeper down. Afraid of being blunt and being honest to oneself. I am one of them. My relative too. And TMS mechanism would seize this to manifestate various symptoms, somewhat subtle compared to back pain for example. Would it be "goodism", or more like "peacism"?

Children may feel rageful being controlled what to eat and they express that rage more directly at a younger age. Adults hate it when children don't follow the agenda, especially an expensive agenda. Tensions are generated but have to be put down so everyone could enjoy the hard earned vacation, etc. Or maybe you would rather be home alone browsing whatever and nap whenever...

 

@clarinetpath @Cactusflower - I cannot begin to tell you how much this has enlightened me. This morning I woke up without a headache for the first time in six months!

I also had a complete tantrum when I was getting the kids ready for school and they wouldn't behave. All the rage came out. This hasn't happened for ages.
And when it did, previously, I subsequently felt embarrassed/guilty. Now it feels OK. Hopefully I can now channel my rage into something useful like my running.

I didn't even mention my father's Alzheimer's diagnosis. That happened at roughly the same time we went on holiday. It's all been going on!

 

Sarno wrote about the very same thing in Healing Back Pain. Vacations, as ironic as it sounds, are the source of quite a lot of stress and for a wide variety of reasons.

 

OP - I think you're on the right track here, and you're certainly getting help from some of the best. But I have to admit I laughed at the "animatronic insects" reference in your initial post. That sounds like something my brain would come up with!

 

I could write a book about the things I saw that night. In my mind, the nurses told me they were robotic representations of different deadly viruses that they'd released into the hospital to study them. I found it all fascinating at the time. To be fair I'd been awake for around 72 hours and hadn't been able to keep any food down for weeks!
My wife said when they wheeled me to the MRI machine I said 'Am I OK to have the scan whilst all these flies are all over me?'

I was also convinced that they were turning the ward into a sort of 'abandoned sanatorium' escape room and ended up being chased round the hospital by the nurses and security - that all got quite scary.

 

Lack of sleep will do amazing things to your psyche. I've been there.