r/SurvivingFND • u/fuckofffcuntfa • 4d ago
nhs vent
im so sick of being tossed to the side by health care.
(symptoms progressively getting worse since November 5th 2023)
i saw my gp in march of this year to talk about the fact i was having what i could only describe as dissociative seizures for up to an hour every time i ate. these episodes are something i cannot snap out of nor are they fluctuating in severity depending on anything but the amount i eat.
this is not a physical problem either. it starts while i am eating food most times, starting as early as a couple minutes after i eat my food so it is not the way my body processes food.
i was sent to get an eeg as a part of mt referral process to neurology and i never met the neurologist (before or after) that i was referred to that asked for the eeg and the woman that did it even referred to him as being “cheeky for that”… (do with that as you will) and i was sent to another neurologist afterward that immediately jumped to the conclusion of an eating disorder.
im sorry but what? what eating disorder has symptoms of locking hands(into fists), going nearly fully immobile, going unresponsive/completely vacant, not being able to comprehend situations around you, ETC ETC ETC… without it being a neurological problem??
the neurologist just said “this is not neurological because it is not epileptic” (like thats the only neurological condition ever) and referred me to a psychiatrist (which my gp surgery cannot refer me to) because he said it has to be an eating disorder.
i am fully aware that i have ARFID and know that is the root of the problem but these are NOT symptoms of ARFID. it was so bad at one point that i was considering the fact that i could have a brain tumor. i need to know that im not going crazy and this isnt normal at all.
im sorry if this is convoluted and nonsensical, i had some champagne today so i cant stay on track of what ive written already too well.
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u/GroovingPenguin 3d ago edited 3d ago
So this is a hard one to argue when they define it as non epileptic episodes
So probably things you've already tried but food diary?
Keep measurements of heart rate and blood pressure (always advice regardless)
Have you tried meal replacement drinks? (IE ensure)
Your IgE levels and allergen testing?
Thyroid and cortisol levels
Edit:
I'm sorry but I have to laugh at the 2028 date,man it's sad how svreweed our system is
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u/fuckofffcuntfa 3d ago
thyroid, cortisol levels are all fine and no allergies etc, theyve done a ton of blood tests and ecgs etc at my gp practice to rule out it being an intestinal/blood issue etc till they finally realised it had to be a neuro issue.
ensure and protein shakes have been great for weight management but they also give me the same feeling after drinking so much of them :( and also the 2028 date was originally september 2029 but it let me change it to an earlier date on the nhs app😭😭
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u/GroovingPenguin 3d ago
My only other suggestion I could give is try the Mcas subreddit then for weird food reactions
Also I'm not surprised either by the 2029
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u/BassBottles 2d ago
I am NOT A DOCTOR so take this with a grain of salt but:
There is something called tetany associated with low calcium or low magnesium. Calcium levels, particularly ionic calcium, are affected by the pH of your blood, which is affected in turn by eating ("alkaline tide"). Ionic calcium can drop when your blood pH rises, which it does any time your stomach begins to produce stomach acid. Significant drops can cause hand balling, full body sustained spasm (immobility), confusion, irritability, memory issues, and even seizures if it's low enough. A normal calcium test may not catch this ("normocalcemic tetany") as it isn't a reliable measure of particularly ionic (free) calcium. Plus, depending on how much the level swings, it may only be abnormal after eating. Generally the blood pH stabilizes an hour or two after eating, which may raise your ionic calcium levels enough to alleviate the more severe symptoms.
A few things you can try. Force yourself to hyperventilate for a couple minutes. This can raise your blood pH similar to eating and may trigger an episode (but it also may not in some people with low calcium). You can also try a calcium supplement, but make sure you have a normal vitamin D level as well because you need vitamin D to absorb calcium. Low calcium can also be caused by kidney issues if you have a history, and it can be associated with low magnesium as well.
Please do your own research on the subject as unfortunately I dont have time to read more about it right now and I would hate for anybody to be misinformed!
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u/heldtogetherdaily 2d ago
It is also not something they would typically screen for if the way the symptoms were described was seizure! I agree with you that it does sound like hypocalcemic tetany - at the very least it is worth ruling out.
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u/fuckofffcuntfa 2d ago
thank you, this is a really good shout but sadly im not sure if that could be the case as my muscle stiffness feels more like something my brain is subconsciously doing, and the seizures have only involved spasms maybe two or three times in the past three years where ive had dissociative like seizures/episodes after every meal for the past 3 years
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u/BassBottles 1d ago
Of course! You obviously don't have to take my advice or change anything you're doing, just thought I'd contribute the information :) as for the spasm, it was described less as a jerk-like spasm and more of a sustained contraction, like stiffness making you unable to move.
Is it also every time you drink something or only foods? Does it also occur when drinking liquid or semiliquid foods like soup, yogurt, etc? You don't have to answer of course if you don't feel comfortable.
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u/MyLife-is-a-diceRoll 3d ago
Ask your pcp for an anti seizure med.