u/bananasplitice

My symptoms have gotten worse over the years - it started out with occasional 1-2 week episodes of heightened temperature, body aches, etc, basically all symptoms of an infection minus the sore throat.

Over the last 3-4 years the pause between said episode got shorter and shorter.

Add heat intolerance, symptoms after showers in the morning, PEM, basically me being unable to put my body under any sort of strain. Suspected POTS.

Symptoms got so bad that by autumn last year I basically had a low grade fever 95% of the days. Going on a GLP did help a bit and brought my high body temperature down.

Then left for 6 months of Bali.
(I had already been there during a first visit 3-4 years ago, where my symptoms actually flared like crazy. I didn't know what was going on, went to a bunch of docs which all pulled the typical "bloodwork is normal" card. Took a bunch of pain killers for way too long, and as soon as I got back to Germany, the symptoms disappeared - sobasically the other way round. Now this time during my visit, my experience was the complete opposite.)

I basically had no flares, no body aches, no nothing, except for 1-2 episodes towards the end of the 6 months which I believe must have been stress-related. I was already so happy that my health had improved so dramatically.

Then, as soon as I got back to Germany end of June, everything went back to 'normal' as in the state I was in before I left. Inflammatory symptoms every day, POTS like symptoms, heat being an insane trigger, unable to take showers.

The only explanation that makes sense it is my heat intolerance?

It's been very hot this summer in Germany and I feel my body feeling a lot less inflamed and just better on days that are less hot and a bit more cloudy/rainy.

In Bali, I was living in an AC-place, had AC on at all times unless I was out, and then I didn't even spend so much time in the sun.

It was a lot more hot and humid though, so I'm wondering if the AC had really cooled my body so much, that the heat of the sun had less of an inflammatory effect on me? That is kind of the only explanation that makes sense to me.

Because here, I do not have any AC, and being inside hot rooms feels insufferable. It made me sleep in the basement when I was visiting my parents, because I literally could not cope with the sticky hot 84 degree room temperature.

Could it be something else though? I am trying to find out what puts my body under so much more distress here.

What is weird is, that during my first stay in Bali, the effect was basically the opposite.

I don't really see how mold could be a reason, because I did in fact have mold poisoning multiple times during my stay abroad, but it never triggered a temperature. Also, I stayed in multiple places during the last 6 weeks in Germany, at times sleeping in a tent in nature, and still had inflammatory symptoms.

I am on a H1 antihistamine, take LDN already, as well as Quercetin, plus a microdose of a GLP. I kind of am afraid to try drugs like Quercetin because of possible weight gain (I already gained 40pounds in the last few years due to other imbalances).

But at this time I genuinely feel my life is not liveable anymore. I can not exercise, the tiniest bit of physical strain/movement puts me into an episode, I got strong reactions to histamine-high foods which in the past I was not having those.

I was eating a ton of bananas, avocados and all that in Bali, and was completely fine, never had a reaction.

Nowadays, when I eat sth high in histamine because I didn't know the food contains histamine, e.g. eggplant or yoghurt, I get the worst reaction including insane anxiety attacks.

It's also difficult to find a doctors whose acquaintained enough with MCAS here. I've never been taken seriously in the past and got my symptoms dismissed despite struggling since years.

Doctors who are specialized in MCAS do not take any new patients and for all others like allergist specialist or immunologist I fear they might dismiss me.

What sort of medications would be worth to try in my current situation? Looking for encouragement and advice.

I see a lot of clinics give out very different recommendations. What would be good and what would be still fine, if a person cannot be without the meds for 30 days (seen that recommendation last which seems very long)

Just figuring out how I get the chance to work on a task.

Is it that I need to be sitting in front of my laptop for some time / hours and keep refreshing to find a task? Or are there times where tasks are available and visible right away?

I've always been on Medikinet, until I went abroad for some time and there the only option was Concerta.

I went with it, and in the beginning was super bummed, because I didn't feel the typical 'euphoric onset' Medikinet gave me. With Medikinet, I feel motivated to tackle a task and get pleasure from it.

With Concerta, I don't feel any of that, it feels like I don't feel anything at all, just more calm.

I somehow did get used to it though and in the end liked the steadier effect of it.

I'm back in my home country now, and the doc let me decide which subscription to renew.

I was a bit indecisive and kinda wanted the 'typical feel of Medikinet again' but then somehow went with Concerta and I'm super bummed.

Idk if other environmental factors are affecting me atm, but I don't feel motivated at all to start task that are on my to do list and that ARE actually meaningful to me, but require effort and all that. Either way, I really really regret my decision.

I'm even on a slighty higher dose (started on 18mg abroad, which I know is really low but it did work for me), now I'm on the next higher dosage.

I'm so frustrated and sad about the lack of pleasure and euphoria that I somehow wanted back so badly and like this feeling of feeling empowered and enabled to 'get shit done'. Now I simply feel a bit more level headed but that's it.

I do not have the opportunity to go back and get another subscription right away, simply for financial reasons.

Is there anything I can tell myself to get into a more empowered state and use Concerta for my purposes?

I've had around 6 weeks of no meds in between because I had to wait for an appointment and was just super low energy and motivation and all that, so I feel the dire need to get back out of that lump and 'get it together' - and now I don't feel how I was hoping I would feel...

I've always been on Medikinet, until I went abroad for some time and there the only option was Concerta.

I went with it, and in the beginning was super bummed, because I didn't feel the typical 'euphoric onset' Medikinet gave me. With Medikinet, I feel motivated to tackle a task and get pleasure from it.

With Concerta, I don't feel any of that, it feels like I don't feel anything at all, just more calm.

I somehow did get used to it though and in the end liked the steadier effect of it.

I'm back in my home country now, and the doc let me decide which subscription to renew.

I was a bit indecisive and kinda wanted the 'typical feel of Medikinet again' but then somehow went with Concerta and I'm super bummed.

Idk if other environmental factors are affecting me atm, but I don't feel motivated at all to start task that are on my to do list and that ARE actually meaningful to me, but require effort and all that. Either way, I really really regret my decision.

I'm even on a slighty higher dose (started on 18mg abroad, which I know is really low but it did work for me), now I'm on the next higher dosage.

I'm so frustrated and sad about the lack of pleasure and euphoria that I somehow wanted back so badly and like this feeling of feeling empowered and enabled to 'get shit done'. Now I simply feel a bit more level headed but that's it.

I do not have the opportunity to go back and get another subscription right away, simply for financial reasons.

Is there anything I can tell myself to get into a more empowered state and use Concerta for my purposes?

I've had around 6 weeks of no meds in between because I had to wait for an appointment and was just super low energy and motivation and all that, so I feel the dire need to get back out of that lump and 'get it together' - and now I don't feel how I was hoping I would feel...

I got an offer for 70$/hour but am awaiting my criminal record still.

how much money are ppl here making on average a week/month in these kinda roles?

I have a pack here at home since beginning of the year, however I cannot get myself to do the IM injection.

pinning subq was already quite a success for me due to needle phobia.

I could use the benefits of CL/CP so much at the moment, due to severe brainfog and the aftermath of mold poisoning.

I've been researching since some time, thinking my thigh is probably the best and less risky spot, but I'm just too scared. Has anyone been in such as situation and has some encouraging words? Or is the effect of Cerebroprotein so minimal that I'm not missing out on much?

I've been having issues with MCAS since some time...interestingly it got better in some places, and worse in others.

I do also have a crazy mold sensitivity and suspected that to be part of the issue. My parents house is super well built, and we cannot know for sure anyways so I cannot verify this little piece.

Last year I spent a few months at my parents' place and got all sorts of issues. MCAS flares, nose congestion, face flushes, overall inflammatory symptoms, temperatures, puffy face, brainfog, weight gain...

I thought I was just in a bad place generally with my health. However, when I left for 6 months, all of those issues disappeared. I lost the weight without even trying, had no more face flushes, no congestion, nothing.

Now, I just got back to my parents 2 weeks ago and pretty much immediately got the same problems again. This time alongside CRAZY anxiety and panic attacks. I could literally feel my body being flushed with stress hormones. It was unbearable and all I wished was for it to be over or for me to not be in my body. Those anxiety attacks started around 11-12 and it got better at night.

Now, regardless whether mold might be an issue or not...(it could also be trauma being triggered cause I experienced substantial childhood trauma in this environment):

What I noticed was, when I water fast, my symptoms get better almost immediately. If i start a fast in the evening, the late morning of the next day, the inflammation is gone.

That brought me to inspect my food intake a bit closer, cause I never paid much attention to it. When I was abroad in those 6 months, I ate a ton of banana, histamine loaded foods like avocado, and had not a single issue.

Since I'm at my parents, I did have yoghurt in the morning. That got me to think 'well, maybe my bucket is so full here, that food does make a difference now'. Guess I have to cut a lot of stuff out.

I did just complete a 36 hour water fast, and got better instantly. Decrease in temperature, no face flushes, no anxiety all day. I initially wanted to do like a 5-6 day water fast which I've done before and helped a ton, but I felt so dizzy this morning and relatively well, that I thought maybe its not even necessary anymore.

I just had breakfast this morning, just some oats with plain water, some apricots and a coffee, and symptoms came back immediately. Face flushes, anxiety, a temperature.

What the heck is going on? Is it really anything I ate that triggered these symptoms right away? I mean if fasting is the only way for me to feel somewhat fine right now, I will try again. I've fasted a bunch of times before, but every time is really difficult for me. I'm not one of those people who can just slide through it.

But at this point, I'm kinda willing to do anything to not have to experience these histamine-induced panick attacks again. Like, Ive never felt this terrible.

I'm almost 100% convinced that change of environment will probably help right away, but for various reasons that's not possible right away. I am not on Ketotifen yet, just antihistamines..may that be a possible support?

Has anyone experienced this? My adhd meds barely work. 3x the amount of my usual dose (which is the lowest dose but still), get me merely the effect of my old regular dose.

Can this be a thing ?

After 4 years of tapering the last bit wasn’t as bad as I thought.

Then, one week after successfully ending the taper I had terrible anxiety, like the worst I’ve felt in years. High states of panic and doom, plus really bad head pressure.

A week after that I feel relatively fine again. Biggest challenge is high levels of fatigue but emotionally it’s going rather well.

Taking the herb Gotu kola since 3 weeks which I can definitely feel calms the nerves and makes me more relaxed overall

I noticed slight itchiness around the anus already a few weeks ago, but my sleep was not affected and I thought perhaps it’s the humidity (I’m in the tropics).

Now since a week the itchiness got a lot worse and also travelled to other areas down there. I feel agitated at night, sleep is terrible, cannot fully relax at night.

I do have black walnut and wormwood with me as well as the rogershood drops but I guess an antiworm medication is better in this case?

I usually refrain from pharmaceuticals but don’t wanna risk worsening it.

Also having full body aches and joint pain since over a week now, as well as a significant temperature (already waking up with a temperature which is unusual, usually when I have a fever my body is not heated up yet in the morning). Could this also be parasites ?

Will go to the doctor of course but wanna get a second opinion. So far have not had great experience with docs here

Ps: I’m also in the final stages of a Cymbalta taper so not sure if the aches and fever is related to that..but I wouldn’t think so as I’ve been tapering for long and never experienced this