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Day 965 of steadily increasing cpsp. What's it like ?

Simon

Nige
Omg
Dunno what else to say
Certainly can’t say anything useful
But you are in my thoughts

Nige

3 year anniversary today. The pain levels this week reached a new high, I had my weaker hand out of the bed holding my phone. No glove. That was enough to trigger 2 hours of constant pain where I found myself breathing to try to minimise it.
Deep Brain Stimulation research project is progressing but no dates. I would like to see the output of my pre op assessment and if the MRI has revealed anything. I did get confirmation this week that loss of speech is a possibility to add to the other risks. It is low risk though. It does seem that like traditional medicine, it might be a balance between pain relief and side effects.

I realised this last week how housebound I had become. I spent time in the garden, nothing major, but I felt different when I was back inside the house. Mentally refreshed. Even if you think you are coping really well with events and the severe pain, perhaps it’s only doing something ordinary and a bit of weak sun on the face that tells you perhaps it is having an impact.

I think it’s fairly obvious that my experience of cpsp is one where I am in a fairly small percentage. Perhaps i feel closest to Phil in his experience. Both of us are looking at operations. 18 months ago I would have dismissed the idea of it completely. Now, I am not sure I have another solution open to me. Increased medication means I would be disconnected from life. My mobility is suffering. I hope to set the wheels in motion next week to get a physio appointment. I want to know if there is an element of physical condition which a) adds to the mobility problems and b) if items have become taught, variably or otherwise, is that pulling on items and generating nerve signals/increased pain. If there is a physical side to it, what can I do about it.
I have survived 3 years, is that a positive. Yes but life is getting harder, slowly but surely. If DBS doesn’t work, what next.
I found this article on DBS. This was based on work at a Bristol hospital which has closed some years ago
https://www.sciencedirect.com/science/article/pii/S0304395909005302

Andrew

Three years today for you, and it is the last day of paid employment for me. Not so good, really.

Is Cathy Stannard still around, even though Frenchay Hospital has been closed for a while? No doubt you will have researched this and already know the answer. She has also reckoned that exercise helps, but that can be easier said than done.

Elsewhere the importance of direct sunlight has been emphasised. A good old blue sky is also to be welcomed. Yes, vitamin D takes a lot of the slack, but today is a nice day even if one were to spend it in the garden, away from the four walls. I have found that light can be awkward, especially outside when the sun is low and in the veg section at the local Asda. But it doesn’t break me now, and what doesn’t break me make me stronger. Therefore I do go out to ‘enjoy’ the sun, even when it is in the face, as it is when going south on the cyclepath in the mornings. I have learned to do what is right, rather that to follow how I feel.

I hope that some of the above helps in some small way, but I am very aware of speaking out of turn and without knowledge.

Simon

Andrew Cathy Stannard still around

Yes and her email is at the head of

Nige

Andrew I did get out in the garden recently. I found it uplifting, my mood improved, I had a bit more energy, more motivated. I completely agree with you. Next warm day, I will give it another go.

I suspect that there might be a gradual impact of not going out much, aside from the vitamin D aspect. Perhaps there is the feeling that I am on the whole ok but then something like time in the garden makes me realise that maybe that isn’t the case. There is ok but there is also better.

Perhaps as much as anything it’s distraction, brain just switches off for a bit and has some new challenges to consider. Such as trying to get a huge dandelion out of a raised bed. Not had those sort of challenges in a while. Bit of brain food for me, not so good for the dandelion.

I think there is always a nervousness with any surgery but I think brain surgery in particular is bound to weigh heavy.

I have been very lucky in that my employment still exists and will do at least until August. One of those real advantages of working for a big company with sick schemes. I am hugely grateful to them.

Pando

Nige I found it uplifting, my mood improved

When we’re cornered, broken, desperate, our instincts try to remind us of the healing power of the sun, and earth. How is it that we became so disconnected from these forces of nature, that we can barely find our way back? I wish I knew what I now know 2 years ago !! I wish you all the best, Nige !!

Nige

Pando I think in part, winter is partly to blame but I do agree with you. There is something just plain nice about seeing a robin (unless you are a worm) or a fish rising to take some food.
Pets possibly give some assistance too.

Yet nature itself is quite brutal in so many ways. It is uplifting for us in what are life and death struggles every day.

Nige

Day 1107 in the house of increasing pain.
What triggered it today, possibly the effort trying to get ready for the pain management programme meeting. Did that generate some stress ?
Who knows but 6 hours later, it’s still really unpleasant. I didn’t make the meeting and wondering if I will make another. Very fed up with a face screwed up in pain and so tired. Sleep apnea figures of 7.6 for obstructive and 4.1 for central so it wasn’t the worst quality sleep.
Have asked the sleep clinic if the research programme looking at the use of a cpap machine combined with the mouth guard (2nd best solution after a cpap machine) had any results.

Pando

Nige I don’t have answers, but I believe Earthing, Vitamin D panel, NIR panel in that order would help. I ground bare feet outside on lawn every day for 45 minutes. There’s no better healing than that in my opinion. I don’t like to know you suffer, so really hope it settles one day. ciao, Roland

Nige

I think when anyone started this journey that post stroke, we would be encouraged to tackle hypersensitivity with contact with various items. Re-educate the cns to relearn what items are and that the touch isn’t a danger.
I get there is some benefit to feet on bare grass. Can’t say really what it is but historically it would give a nice feeling.
Regrettably if I touch anything cool, let alone cold, my whole left hand side is going to be in extreme pain. I would struggle to stand after a min or two.

Maybe one for the summer. I will give it a go

EmeraldEyes

Nige I take it you’ve tried vitamin D?
Regardless of a good diet it might be that you don’t absorb enough vit D from food (a malabsorption problem), a malfunction as a result of your stroke. But then that sort of thing would surely show up in blood tests I would have thought.
We certainly don’t get enough sunlight this time of year, but even in fine weather you still may not be getting enough if you are laid up in bed half the time with CPSP.

You get Vitamin D from the sun and also:
oily fish – such as salmon, sardines, herring and mackerel.
red meat.
liver (avoid liver if you are pregnant)
egg yolks.
fortified foods – such as some fat spreads and breakfast cereals.

At this point you probably know and have all this, I just thought I’d put it in anyway for the benefit of anyone reading this who are unaware. But one thing it won’t cure is the pain of osteoarthritis, my thumbs are a testament to that 😔

Lorraine

Nige

EmeraldEyes I think I need to get back on it Lorraine. My time outside has reduced a lot as the cold just makes it so difficult. Even if I did I guess the sun rays are so weak it might not make much difference.
Not had vitamin D mentioned as an issue in any of the blood tests. I had a spell when I was having so many I was surprised there was any blood left.
Historically my issue has been potassium with my adrenal gland being faulty, very low readings at times.
I wish i had been told about the sodium issue that came with the faulty gland. I loved crisps as well and twiglets. It was one of the things you knew it was Xmas when the twiglet tubs were in the shops. I wonder looking back if they were, at least in part, responsible.
These should do ?

Andrew

I agree with EmeraldEyes with regard to vitamin D and whether/how it is absorbed. Michael Mosley talked about this at length, relating the amount of D in the body to the gut biome, the immune system in general, and he also recommended fermented foods such as yoghurt (I make my own), kimchi (likewise), soy sauce (bottle, I’m afraid, but it’s great on stir fries). The last two contain salt and therefore need to be watched, but there is a huge amount in processed foods and it’s often masked with a fair bit of sugar. So I have ditched as much processed food as possible. I suspect that my salt intake has reduced despite the kimchi and the stir fry. Indeed, the doc is often saying that blood tests indicate that I am right at the bottom of what is acceptable despite this regime, and the taking of oxo cubes with ¼ tsp of salt an hour before the test on the latest occasion! To set this into context, prior to the stroke I did a lot of fast cycling. I sweated a lot, ate big bags of crisps (S&V, Ready Salted for preference) and even then I rarely dipped below the threshold as far as I know. On rare occasions I did, and it was accompanied by a mild headache and a metallic taste in the mouth - my wife did too. Quite obvious eventually. Both went after a bag of crisps almost immediately, and on those occasions only did I have the “Oh that’s really good” response. So it was not psychosomatic. Despite all that, I haven’t experienced that type of headache and taste since the stroke, and I guess that I haven’t sweated enough. Yet.

Pando

Nige

That’s a start : Just think, you would need to eat between 400 and 666 grams (14–23.5 ounces) of wild salmon to get 4000 IU of vitamin D !

Andrew

This going to be bit geeky or nerdy or both - I can’t tell the difference. Apologies in advance. But let others argue!

At maximum power in the summer we will attract a solar energy of about 1200 W/m2. Obviously it is often lower due to cloud cover and the time of day. From what I can make out, today’s maximum was only 217 W/m², and the next few days are likely to be, in turn,180, 137, 95, 135 and so on, with a whopping great 408 a week on Saturday (i.e.10 days’ time). Practice your sunbathing then! This last one might represent the theoretical maximum at this time of year. The temperature variation profile is not too far from being quite different, and depends on winds and air masses wafting in as well as the radiant heat of the sun.

There is not a lot we can do except to follow the predictions online. For the above numbers I did a quick google search for “watts per m² bristol”, but I usually follow martynhicks.uk (not a typo) for current info, which is solely for Bristol folk. The reason for the latter was simply to determine roughly what to expect when cycling to work pre-stroke - do I wear a coat, or how many layers, etc..

Simon

Andrew
One for @Pando !

Pando

Andrew

I use an app called Dminder to know when the next vitamin D opportunity from the Sun arises ; it tells me in 13 days !!! hooray. Although the Sun has more to offer us than D.

Otherwise ; DIY your own app

Creating an app that estimates how much vitamin D you get from sun exposure involves several factors, including your location, skin type, time of day, duration of sun exposure, and the amount of skin exposed. Here’s a basic outline of how such an app could work:

Key Features:

Location Tracking: Use GPS to determine the user’s location to calculate the UV index.
UV Index Data: Integrate with a weather API to get real-time UV index data.
Skin Type Input: Allow users to input their skin type (Fitzpatrick scale) to estimate vitamin D synthesis.
Time and Duration: Let users input the time of day and duration of sun exposure.
Clothing and Sunscreen: Consider the amount of skin exposed and whether sunscreen is used.
Vitamin D Calculation: Use a formula to estimate vitamin D production based on the above factors.
Recommendations: Provide personalized recommendations for optimal sun exposure.

Example Workflow:

User Input:
- Location (auto-detected or manual input).
- Skin type (I-VI on the Fitzpatrick scale).
- Time of day and duration of sun exposure.
- Amount of skin exposed (e.g., face, arms, legs).
- Use of sunscreen (SPF level).
Data Processing:
- Fetch UV index from a weather API.
- Calculate effective UV exposure based on skin type and sunscreen use.
- Estimate vitamin D synthesis using a formula like:
  [
  \text{Vitamin D (IU)} = \text{UV Index} \times \text{Skin Type Factor} \times \text{Exposed Skin Area} \times \text{Time (minutes)}
  ]
Output:
- Display estimated vitamin D production in International Units (IU).
- Provide tips for safe sun exposure and vitamin D optimization.

Example APIs:

OpenWeatherMap: For UV index data.
Google Maps API: For location tracking.

Example Formula:

A simplified formula for vitamin D estimation might look like this:
[
\text{Vitamin D (IU)} = \text{UV Index} \times \text{Skin Type Factor} \times \text{Exposed Skin Area} \times \text{Time (minutes)}
]
Where:

Skin Type Factor: A multiplier based on skin type (e.g., 1 for Type I, 0.5 for Type IV).
Exposed Skin Area: Percentage of skin exposed (e.g., 25% for face and hands).

Example Calculation:

UV Index: 5
Skin Type: III (Factor: 0.75)
Exposed Skin Area: 25%
Time: 30 minutes

[
\text{Vitamin D} = 5 \times 0.75 \times 0.25 \times 30 = 28.125 \text{ IU}
]

Additional Considerations:

Health Guidelines: Incorporate guidelines from health organizations (e.g., WHO, NIH) for safe sun exposure and vitamin D intake.
User Education: Provide information on the importance of vitamin D, risks of overexposure, and how to balance sun exposure with skin protection.

Development Tools:

Frontend: React Native, Flutter, or Swift for mobile app development.
Backend: Node.js, Python (Django/Flask) for server-side logic.
Database: Firebase, MongoDB for user data storage.

Example App Name:

D-Sunshine
Vitamin D Tracker
SunSafe D

This app would help users optimize their sun exposure for vitamin D synthesis while minimizing the risk of skin damage.

EmeraldEyes

Yes, they would do. I’m only guess here, it might take a couple of days to feel any positive effect. Or it might take a couple of weeks to feel any significant difference. I know when I was low in Folic acid, it just took a few days being on them before I was feeling the benefits of it. But that was a high dose prescribed by my gp. Fingers crossed you feel some reduction from your pain.

Andrew

Vitamin D and Potassium - seem good to me. Obviously the doctor needs to know just to check.

Nige

Pando wow that is a lot. I would prefer not to take a tablet but it does seem much easier

Pando

Nige I took 12,000 IU of D yesterday plus pill of Magnesium, Calcium, Cu, Zinc, Boron, D, K2 and a bit of Restless Leg at night. However, on Thursday I took 7,000 IU of D and no pill, just Mg and got cramps all night long in legs.

Most Vitamin D3 supplements are made using lanolin, the waxy substance secreted by sheep to condition their wool. It’s a safe and effective way to get vitamin D, which is essential for bone, muscle, and immune health. Many folks are allergic to it. The safest way of getting D that never gives me problems is my UVB panel from the USA ; 5 minutes front and 5 mins back each day. No such panel can be bought in the UK, unfortunately

11 Days until we can get D from the sun, and exit Winter syndrome mode!

Pando

Nige I will venture a little further, but whether or not my advice speaks to you, I know not. I have a feeling you might have put me in the “woo woo” category. When (if ever) you reach adequate vitamin D levels your gut will function at its best. The immune system monitors and influences the gut microbiome which in turn impacts brain health in numerous ways. (The human genome has 26,000 functioning genes; our large intestine (through 100 trillion bacteria) contains 4 million genes.) It is estimated that the gut flora produce 95% of the serotonin, a key neurotransmitter for happiness and pain control, that we use.

To find out what the optimal does is (way more than the govt. RDA) read “The Optimal Dose,” by Judson Somerville, MD

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