u/InsuranceRare5094

Background:

World traveler - visited & lived in many countries
American

10+ years advising businesses on SEO and website strategy for a Fortune 500 co.

Founder of a destination experience business.

Published non-fiction writer

B.Ed + MBA

.

Thanks in advance for your advice.

Ideally it would be a simple plug and play. Something that clearly satisfies a need, and that, preferably, can be delivered over 6 weeks time.

Not looking for eternal clients at this point.

When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.

I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.

What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane.

I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.

Diapers.

The mast cells in my bladder area were freaking out.

.

Before learning to titrate my meds - in desperation, I took prednisolone for about 6 months (never more than 10 mg a day, usually 5) - just to avoid being bed bound - and at the lowest possible dose that was moderately effective for me which was normally 5 mg.

About 5 mg a day helped me tremendously to function, though far from ideally, but I knew I couldn’t keep it going long term due to the overall negative impact to my body.

So, I used the prednisolone to help me on-ramp the Ketotifen first. My thinking was to keep the prednisolone going to keep my body from rejecting the medication and to start with a medication that would stabilize my mast cells (Ketotifen).

.

I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.

One drop for one week.

Two drops for two weeks.

Three drops for three weeks.

All taken before bed.

The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.

Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.

I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.

So when I tell you I titrated painfully slowly - it was my only hope.

.

Once I got the ketotifen going at full dose (2 mg per day - and this took many months to reach 2 mg) - only then did I slowly reduce the prednisolone until I reluctantly stopped it entirely. I remember clearly being so afraid I’d have to jump right back on the prednisolone.

But to my astonishment, the ketotifen was working considerably well on its own - enough to keep me functioning moderately well without prednisolone’s support.

.

Then I began trialing other meds and, through a number of trials that did cause a fair deal of suffering at times, I found the meds I’ve listed (Ketotifen, rupatadine, and pantoprazole) as working for me.

There was no fairy godmother.

I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.

I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.

It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.

My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.

The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.

The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.

In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.

.

Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.

.

Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH

.

So - that’s how it came to be that I learned this technique of minute titrations.

That is how I learned to set up my own personal drug trials as science experiments.

That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.

That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.

.

Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.

Be well.
❤️

When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.

I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.

What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane.

I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.

Diapers.

The mast cells in my bladder area were freaking out.

.

Before learning to titrate my meds - in desperation, I took prednisolone for about 6 months (never more than 10 mg a day, usually 5) - just to avoid being bed bound - and at the lowest possible dose that was moderately effective for me which was normally 5 mg.

About 5 mg a day helped me tremendously to function, though far from ideally, but I knew I couldn’t keep it going long term due to the overall negative impact to my body.

So, I used the prednisolone to help me on-ramp the Ketotifen first. My thinking was to keep the prednisolone going to keep my body from rejecting the medication and to start with a medication that would stabilize my mast cells (Ketotifen).

.

I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.

One drop for one week.

Two drops for two weeks.

Three drops for three weeks.

All taken before bed.

The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.

Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.

I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.

So when I tell you I titrated painfully slowly - it was my only hope.

.

Once I got the ketotifen going at full dose (2 mg per day - and this took many months to reach 2 mg) - only then did I slowly reduce the prednisolone until I reluctantly stopped it entirely. I remember clearly being so afraid I’d have to jump right back on the prednisolone.

But to my astonishment, the ketotifen was working considerably well on its own - enough to keep me functioning moderately well without prednisolone’s support.

.

Then I began trialing other meds and, through a number of trials that did cause a fair deal of suffering at times, I found the meds I’ve listed (Ketotifen, rupatadine, and pantoprazole) as working for me.

There was no fairy godmother.

I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.

I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.

It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.

My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.

The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.

The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.

In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.

.

Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.

.

Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH

.

So - that’s how it came to be that I learned this technique of minute titrations.

That is how I learned to set up my own personal drug trials as science experiments.

That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.

That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.

.

Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.

Be well.
❤️

It took me many years to figure this out. I hope it helps people learn to apply this technique much sooner than I learned to apply it.

In this message, I explain what I did to another person on Reddit. You’re catching it mid conversation, but you’ll get what you need from it.

Best wishes on your wellness. ❤️

How are you guys dealing with this effectively?

Greetings. Kindly let me know if US social security is taxed in Hungary. There’s seems to have been a change related to this in 2024 so I’m looking for the most up to date info.

Thanks in advance and be well all.