update on oxygen therapy : a friend with MS got... - Thyroid UK

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update on oxygen therapy

Regenallotment profile image
RegenallotmentAmbassador
30 Replies

a friend with MS got me into this, we are lucky to have an MS centre with a hyperbaric chamber in Hereford. It’s not NHS

They kindly accepted me as a trial as it’s usually MS patients, burns patients and cancer recovery but also fibromyalgia and inflammation.

I’ve just completed my 20th session which is their initial recommendation as a block of treatment to fully saturate the cells.

It’s been £10 a session and I’ve gone twice or three times a week.

after the initial block of 20 it’s £15 a session.

It took about 10 sessions to notice anything but I have definitely noticed less fatigue and my tum which is often disturbed has definitely settled.

Just thought I’d share in case it’s of interest 🌱

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Buddy195 profile image
Buddy195Administrator

Good to know that the Oxygen therapy has benefited you Regenallotment 👍

Bertwills profile image
Bertwills

great idea, I think I’ll try that out. Thank you

TiggerMe profile image
TiggerMeAmbassador

Interesting, I did ping and email off to our local one a few months ago and didn't hear back, must give them another try 🤗

HealthStarDust profile image
HealthStarDust

Sounds good! How long were your sessions?

How do you think it affect your “tum”?

Regenallotment profile image
RegenallotmentAmbassador in reply toHealthStarDust

Each session is about 50mins, a few mins to get down to pressure and a few mins to get back up either end.

Tum - I’ve been very loose for many years even when very hypo. Going 8-10 times a day. Very fast transit and quite undigested. (Being over range isn’t much different for me.) Sorting my various intolerances helped massively and I even became constipated slightly when hypo in January, but I still had cramps and odd episodes of loose stools, I’m now at once a day and more ‘form’ and definitely digested. It’s all quite noticeably improved 💩🌱🤭

HealthStarDust profile image
HealthStarDust in reply toRegenallotment

Thank you for sharing all this poop talk that I completely relate to.

Also, I just found a centre near me that charges slightly more that yours so I may well give it a go.

Regenallotment profile image
RegenallotmentAmbassador in reply toHealthStarDust

Now I’ve done my 20 sessions it’s £15 per session and trialling once a week. Not sure how long I can keep that up realistically with all the supplement costs too but I don’t really drink so trying to see it as 2 bottles of wine equivalent 🤭

HealthStarDust profile image
HealthStarDust in reply toRegenallotment

You might find this of interest ncbi.nlm.nih.gov/pmc/articl...

How many weeks were the 20 sessions over? Perhaps you might benefit from sort of maintenance dose.

Funny too is that is how I calculate my spend and savings! Wages rise I calculated a bit differently… how many dinners out a month can it afford me?

Really glad you shared this and I hope my local centre let me have a trail.

Regenallotment profile image
RegenallotmentAmbassador in reply toHealthStarDust

Oh to sleep in one at home that would be the ultimate! Like Michael Jackson! I fell asleep in a session a few weeks back and felt incredible for a few days!

Yup they said try weekly, May prefer twice a week. Will play it by ear.

My other measure is ‘weeks shopping in Aldi’ or a new one ‘bottle of olive oil’!

arTistapple profile image
arTistapple

Yes my friend who has been doing this for years for her MS gets real benefit. I always think her day to day trials of her symptoms are remarkably similar to my own. She does not seem to be the really progressive type of MS sufferer. In fact she has completely outlived all the people with MS she knew at the start of this hyperbaric experiment. I have little doubt that in the end the two conditions will have similar causes/effects. Many symptoms remarkably similar to hypo.

Flaxjax profile image
Flaxjax in reply toarTistapple

This is my line of thought too, I have an MS diagnosis but no meds and I seem to have had 2 episodes and then nothing else. Also am hypothyroid, psoriasis and now inflammatory arthritis starting which I'm not finding fun at all. They must all be linked, I'm thinking gut microbiome at the moment so working on that 👍

Regenallotment profile image
RegenallotmentAmbassador in reply toFlaxjax

Gut is central isn’t it. Speaking to the MS sufferers at the centre they are all following similar auto immune diets and supplementing in a similar way. 🤞for you with gut microbiome , I’ve found it’s a lengthy and ongoing challenge 🌱

arTistapple profile image
arTistapple in reply toFlaxjax

Well the longer all ‘this’ goes on, the more I am convinced the gut microbiome is of extreme importance. So I think you are working in the right area.

I have found (surprise surprise) sugar is absolutely a no brainier for me. Next is the bread/gluten issue. I can eat this without immediate effect but it definitely catches up.

However modern life, and all our expectations, especially with all the different possible worsening of symptoms of hypo makes it difficult to arrange stuff (brain fog). Worry about can I do this (getting about) and what are my alternatives etc etc make even looking after our microbiome a huge job and a half. Nothing it seems is straightforward being hypo. Ts a permanent state of ‘negotiating’ with self. Exhausting on it’s own!

My friend has all the same Co-morbidities as myself but her diagnosis is MS and mine hypo. I keep trying to get her to get tested for hypo but as I have said previously, we can get quite ‘precious’ about our diagnoses. I definitely do not want her diagnosis. This is quite bad enough thank you.

Flaxjax profile image
Flaxjax in reply toarTistapple

I agree with all you say and I could literally talk for hours about guts and poo 🤣 my poor husband!Have had an MS diagnosis for about 17 years (just after I had my son) but first episode was about 3 years previous after working in a very stressful job - months of 70 hour+ weeks and then I went on holiday and went blind in one eye, turns out it was optic neuritis which is often how MS starts.

Then during COVID times (menopause mixed in too) after I had the vaccination (I don't regret it btw) and my guts went haywire, chronic diarrhea for months, couldn't eat much that didn't react but putting on weight hand over fist. Anyhow diagnosed hypo plus calprotectin off the scale but endoscopy clear 🤷.

So it's been a rocky road since but adding in some T3 has helped make me feel better (self medicating) but the gut issues persisted so now taking TUDCA after seeing recommendation on this group from someone, pomegranate extract and digestive enzymes. Now my poo is a lovely 3 or 4 on the Bristol Scale and thats a much better situation to be in. Oh plus I've swapped my dairy to goats milk and cheese which is good for the microbiome too!

arTistapple profile image
arTistapple in reply toFlaxjax

You sound brilliantly organised. Just a wee question. Did you get your sight back? I have had a few incidents of this which was temporary and I get ‘silent migraines’ (less now) when my blood sugar is wonky and I get big holes in my vision then. I have just put it down to another aspect of hypo, but twice I felt I must be having a stroke but NOT!

My Mother also lost her sight and I think was undiagnosed hypo. In her case it was put down to glaucoma and Sjogrens.

I am much older than you so no worries on that score for you.

Your Bristol score is something to crow about.

Flaxjax profile image
Flaxjax in reply toarTistapple

The Bristol Scale achievement is quite a recent one so I'm still batheing in the glow so to speak 🤣Yes I did get my sight back, my second 'attack' was pins and needles, from the knee down in both legs. That also resolved but I'm left with sensory weirdness in the soles of both feet when I'm hot at the gym or ill or 'flaring up' somehow.

I've done the Zoe thing which showed my gut diversity wasn't that good despite eating the recommended diet their app promoted. So I got to wondering why and came to the conclusion that I needed to manipulate my gut microbes by eating things that favour the more beneficial guys that will help calm my inards 👍

Stress is my big problem and has obviously damaged me but I've noticed my resilience has improved (fatigue, brain fog) but this arthritis thing starting has made me double down on the gut stuff. It's all linked.

Have you noticed your sight and migraine issues are made worse by foods you've eaten or is it stress maybe? These are all clues ❤️🧐

TiggerMe profile image
TiggerMeAmbassador in reply toFlaxjax

Pleased to hear TUDCA is working for you too👏💩 I'm thinking improved bile production goes hand in hand with gut health

Regenallotment profile image
RegenallotmentAmbassador in reply toTiggerMe

I’m going to try that too in that case 🌱💩🤭

Regenallotment profile image
RegenallotmentAmbassador in reply toFlaxjax

100% on stress yes I completely agree! Thanks for sharing it’s so interesting to compare parallels. Wow amazing that your MS episodes have halted like that, much the same for my friend. 🌱

arTistapple profile image
arTistapple in reply toFlaxjax

Stress. Honestly I wonder, now that I know how much my thyroid hormones affect stress. Chicken or egg? I am inclined to think my stress has been pretty much due to my hormones. Hugely (and unnecessarily) ambitious and initially loving to overwork. I wonder now what kind of life I would have experienced if this hypo had never happened.

Still definite connections with certain foods, which naturally I try to avoid but there is still a bit of almost suicidal behaviour around those things. Additive behaviour but enormously reduced now.

Regenallotment profile image
RegenallotmentAmbassador in reply toarTistapple

Totally agree, early career would have been quite different without the undiagnosed hypo anxiety 😌

Flaxjax profile image
Flaxjax in reply toarTistapple

It's all connected - chicken and egg, doesn't really matter imo, we just have to intervene somehow. Changing the gut composition is like turning a supertanker, slow and takes time. But it can be done I believe. Bile flow, eating healthy fats, protein, and FIBER but the right kind - the kind your gut needs. I have the motherload of fiber for breakfast, overnight oats with chia seeds and cashew nuts plus berries all soaked in goats milk. Gets me off to a great start to the day! At least 20% of conversion for thyroid hormones happen in the gut! And so many other hormones and beneficial chemicals that the gut bacteria produce and also pertinent to this is the immune system and inflammation. All can be influenced by the guy!But it's not a smooth process but I don't worry about the bumps so long as I'm improving long term 👍

Anxiety - I was once so bad I couldn't even stand being a passenger in the car! (Shaking and crying ) I've come a long way thankfully. It was another very stressful period in my life but I'm in a much better place now and I'm always optimistic that everyone can improve their situation with tasty food, the right supplementation and avoiding stress (not always possible I know) ❤️

Sorry for rambling but I could honestly talk for hours about the gut and poo 💩❤️🤣🤣🤣 it's nice to know I'm not alone 😎

levogirl profile image
levogirl

hello, I have often considered this, but hesitated because spending £200 is a lot if it doesn’t work but clearly you have had some benefit. How long does the benefit last? Also, perhaps you can tell me that when you go into the chamber, does it have a handle on the inside, as I have claustrophobia. I remember having a lung function test in a sealed cubicle with no handle on the inside and I found that very difficult. Your experience of it sounds good thanks for sharing. x

Regenallotment profile image
RegenallotmentAmbassador in reply tolevogirl

Yep it was a deep breath moment committing to 20 sessions financially, but my husband spends nearly that in wine and beer per week which I pointed out to him gleefully, bless him he cut back 🤗

the chamber is pressurised so you do have to trust the engineer on the outside. At our centre here in Hereford they are super attentive and kind. The first time is a bit awful, I hear you. But you are in with three others who will watch you carefully if they are experienced users. Any sign of discomfort they will drop the pressure back to normal and open the he door. I was like princess and the pea finding a comfortable mask, they are super patient. You can take the mask off in there and rub your face etc. they also have cctv on each of you and a walkie talkie. There is a big sign saying bang on the side of the chamber if you red help and an emergency release valve in the roof that you don’t touch unless someone tells you to. In my initial sessions I found breathing really anxiety inducing, I found reading or listening to a podcast (they have wifi in there) super helpful, if I could hear my breathing I’d get focused on it and forget how to 🤣 I did find breathing out harder than breathing in, it tended to go out the sides of the mask although when breathing in the mask kind of sucks into your face and you definitely get the cool oxygen.

In terms of how long it lasts it’s very individual but for me I’d say up till session 10 probably a few hours, if I had a snooze after then it would set me up for that evening or following day. By session 18-19 it’s definitely lasting days at a time. A few weeks back I had a day trip to London on a coach followed a few days later by a heavy period followed by a 3 day Geography field trip Mon-Weds with banging 3 day headache (probs ferritin) on Thurs we went to Manchester and saw Peter Kay after work and got home at 3.30am I got up 3 hours later and went to work on the Friday, had a session in the afternoon and on the Saturday we drove 2 hours to watch my daughter skydive usually this would be impossible, hubby was ready to catch my fall all week… it didn’t happen, I was fine…. Interestingly I found myself telling him I think for the first time I could feel the difference between tired and fatigue, I knew I was tired but I wasn’t fatigued. It’s up and down, I’m keen to try more exercise and weights to build muscle but that’s a slow process I seem only to manage once a week. Work in progress 🌱

I've just googled and found one near me. It's £90 an hour!! 😳 £10 is a bargain.

hormonaljunkie profile image
hormonaljunkie in reply toWitchingHour2point0

Minimum £220 in London! £90 sounds so good 😂🙈

Regenallotment profile image
RegenallotmentAmbassador in reply toWitchingHour2point0

Cripes come to Hereford 👏

hormonaljunkie profile image
hormonaljunkie

Hi Regenallotment,

My jaw dropped seeing £10! I'm glad to read that the therapy has heped.

My dr has recommended that I do HBOT 5 days a week for a few weeks, but every place in London seems to be minimum £220 per session, and then you have to check that it's a good quality machine as they don't all have the same pressure (the portable ones for instance are less powerful and a loot of places that have them charge as much as the proper machines.

Who can afford to spend thousands on this when you're out of work because of sickness is beyond me! Of course most people who do go to these places are going for the "biohacking" trend (not being dismissive but it is frustrating to see people with no real health problems doing this for 'fun' whilst it's inaccessible to a lot of those who actually need it!)

Would you mind sharing the name of your clinic? Might have to make a trip to Hereford 😂

Regenallotment profile image
RegenallotmentAmbassador in reply tohormonaljunkie

Oxygen and Wellness Hereford 🤗 it’s on Google maps Mostyn Road. You can very likely get a nice B&B and book in for a few blocks of treatment cheaper than that, Hereford is lovely, lots to do up here. It’s a massive rock solid diving bell type chamber that seats 4. They do run different sessions and different pressures, some is for divers with the bends I believe. Give them a call, Sammy on the desk is super kind and helpful 🙏🌱

hormonaljunkie profile image
hormonaljunkie in reply toRegenallotment

Thank you so much for sharing this 🙏 Might end up having a 'holiday' this year after all 😂

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