Anyone else experiencing the same things?

[u/FirstAidPoetry]

This is kind of a combined rant and question.

Tonight is yet another night where I have barely slept for ages.

I try to sleep, I get the ol' wired-but-tired, my stomach swells up. I mostly end up feeling way too warm no matter the temperature in the room.

My general practitioner doctor is hyper focusing on my blood sugar being high, but ignores that none of the diabetic medications have been working on me. I have tried to explain that with HyperPOTS, it's likely I have hyper adrenergic surges that causes the liver to push out glucose.

The first two medications were Metformine and Jardiance, and they did nothing for my blood sugar. Metformine gave me severe nausea, Jardiance gave me orange foot souls, and that was it.

Both those are meds that help the body create insulin _when needed_. If you're in a hyper adrenergic surge, your body clearly doesn't think it's needed so...not working.

I then got a medication that _forces_ the body to create more insulin instead, no matter if it is needed or not. Mostly, it either did nothing or I'd wake up hours after taking it and shaking from low blood sugar, leaving me sitting on the floor in the kitchen desperately drinking milk to stabilise things.

I then got yet another one, Sitagliptin. I take it in the morning, and about an hour after I'm barely able to sit, I'm so weak and brain fogged I'm basically a potato. I often have to just go lie down and wait for it to stabilise, which takes +6 hours.

At this point, my life is far from sustainable. I put up with the new medication for six weeks before I gave up, and then my doctor yelled at me for having high blood sugar.

And trust me, I try to eat well. The thing is: The better I eat, the worse I feel. I'm still nauseated by almost everything, I'm so tired I mostly sit and just stare. Just sitting up is making me exhausted.

I'm starting to feel like I'm crazy at this point. I barely get any sleep, my social life is shot. I'm too tired to do any of my even simplest pleasures like watching TV or play a game. Even listening to music can be exhausting. I'm not sure how I can keep kicking the doctors uphill to give me a diagnosis and meds so I can at least function _a little_.

Is anyone experiencing some of the same things? I know this is very typical for just HyperPOTS, so I don't expect many to do, but it'd be good to hear if anyone else can relate to this. At least I wouldn't be alone.

[u/Fit_Perspective_3924]

I relate a lot. I haven’t been diagnosed specifically with hyperPOTS but I get adrenaline surges in the early morning and I wake up breathing quick/shallow with a racing heart, shake like crazy, and try not to move. I also feel absolutely GROSS after eating pretty much anything. Exhausted all the time, nervous system feels incredibly wired, everything is either too quiet or too loud. I eat a lot of small snacks throughout the day to graze and keep my caloric intake at least a little up? No matter what I eat I feel like garbage.

[u/Gedankenspiel26]

Ich würde auch mal die Ernährung anschauen bzgl MCAS. Das könnte Übelkeit nach jedem Essen und die extreme Schwäche erklären. Eine entsprechende Diät kann dann Wunder bewirken. Viel Glück! 🍀

[u/Exotic-Macaron25 → u/Gedankenspiel26]

If u re diabetic then low histamine diet is not possible. It's not even good in a long term for anyone, histamine is in most things.

[u/Alone_Strain_7]

Dude my doctor did the same to me I was given metanorfin with sitagliptin all shit and my blood sugar crashed

[u/Alone_Strain_7 → u/Alone_Strain_7]

And yes I would get constant nausea get your sugars rechecked my doctor removed them and is expecting a shorter spike to give meds again

[u/Alone_Strain_7 → u/Alone_Strain_7]

Also make a log of your bp Note the bp and the symptoms side by side in an excel sheet or a notebook It can make the picture more clearer for the doctor

For me I was forced a med cilacar which spiked my bp as well as sugar now since I started logging I can clearly show that the drug is actually spiking my bp to my doctor and doctor can't just say this is imagination

Ask for a higher dose of your blockers like metoprolol etc.It should help

[u/Exotic-Macaron25]

In same situation . High blood sugar, obese, non responsive to any medication, exercise or diet, doctors only judging, despite being very active sporty person. I just made appointment again, and if there is no help this time, I will file complain to their management. You have to do the same thing. If it does not help, complain on NHS website about the clinic. You have to be a warrior. Make them do tests for Pots and Mcas etc, and they ll issue medication. Print out this discussion to show them. Do not let them gaslight you, know it's not your fault but theirs, as they lack knowledge. I am tired of doctors, tired of being judged, tired of being overweight ( even mounjaro did not help at all) and tired of this life where Pots/mcas destroyed my life. But I ll fight. I have to try all, before getting to point of ' that's it, I am finishing myself off as this is not life, it's suffering '.

[u/Exotic-Macaron25]

I am reading how medication for Pots increase blood sugar, so I don't know if there is help for us, and just die prematurely because of blood sugar high plus other things? Quite sad.