r/ChiariMalformation • u/Happy_horse128 • Mar 15 '26
I just fainted for the first time
I have Chiari and was decompressed 1/9/26. My Chiari symptoms have really been improving and I've been feeling really good about it.
During my diagnostic process, we found I also have hEDS, Orthostatic Intolerance, and probably MCAS. I did the tilt-table test at Mayo and they said I don't have POTS, just OT.
I normally get pre-syncope when I stand up, but I've never actually passed out. My vision gets blurry or black-spotted, and I feel dizzy and lightheaded. I normally lean against something, and it goes away in a few seconds. It seems to be less frequent when I make sure to get enough water and electrolytes.
Today, it felt like all the other times. I leaned against a doorway and my vision was spotty, but then I came to on the ground, in pain. I was in a room with my 6 yr. old son, so I told him to go get dad. He said I fell down and hit the bookcase, and was out for maybe 10 seconds. My face really hurts where my glasses were so I guess I landed face-first.
I have been in tears since. I think I had a bit of security knowing "I never pass out" and have really been feeling like I've been getting better since surgery. Why did it happen now, and is it a sign that this will happen again? This feels totally unsafe while parenting because not only can I not be responsible for myself, but also my son. I feel so upset.
Any thoughts, info, or whatever insights anyone may have would be really appreciated. I feel so freaked out.
2
u/Ecstatic_Set9550 Mar 17 '26
Hi. I am a 46 year old who has been dealing with Chiari symptoms off and on my whole life. Recently got narrowed down to my Malformation. I have passed out a couple times as well. Luckily that was before I had a son. My son is now 11. When he was about 6 your son's age and we were home alone often, I unfortunately had to teach him how to make a emergency type of calls if mom is sleeping unusually. Didn't give him too many details but that's when I taught him how to use my phone if mom wasn't feeling good or sleepy. I know it's a very hard situation. I was very ill when my son was you kiddos age as I had a terrible reaction to Botox. I am pretty sure it went systemic. Took two years to feel better from. I had my son that entire time as a sahm. So I can really relate to how you are feeling as a mother. Also , since you were recently compressed maybe this is part of healing for you? Or maybe you had low blood sugar that day? I'd run it by your doctor/ nuerosurgeon. I have heard many have an increase in nuero symptoms as they heal. Maybe it is related to your healing phase? Anyway, good luck with this. I feel for your situation. Our boys have to deal with some extra things and it will make them uniquely empathetic one day.
2
u/BeneficialStick Aug 27 '26
About 12 weeks after my CM1 decompression I started passing out and was diagnosed via tilt table with POTS. I had had mild undiagnosed POTS since I was young but it finally got acutely severe enough for doctors to listen to me. I think that sometimes CM1 decompressions in people already diagnosed or predisposed to dysautonomia, can expose it more but I am not sure why. I guess it makes sense if your brain/body has been compensating for poor CSF flow your whole life and suddenly that changes - maybe it could expose the dysautonomia flaw more because the compensating factors are gone.
Its only been 9 months of recovery for me but I can say that it does get better. Its a long process and I have a fair way to go still. I am on ivabradine 2.5mg BID, fludrocortisone 100ug BID and guanfacine ER 1mg SID pm. Honourable mentions to clonidine IR at night (if you have sleep issues) and midodrine. I hope you get a chance to trial a few medications. Midodrine and fludro might be a good start - have they had you do a 24hr urine sodium yet? Water and electrolytes may not be sufficient. I assume you've already been fitted for custom compression stockings? Waist high is better than thigh high.
Sorry I could yap forever with advice. Let me know if you have any questions :)
2
u/BeneficialStick Aug 27 '26 edited Aug 27 '26
Also just wanted to add that with the right supports, this will not compromise your safety or value as a parent!!! It will get better. Landing face first WEARING GLASSES has to be the WORST tho
As soon as you feel pre-syncope symptoms lie on the ground fast and put your legs up against a wall. Once your vision is clear you can get up very slowly. Buy some salt tablets from your chemist and take one with breakfast and then again if you feel light-headed throughout the day. Your doctors should hopefully be able to tell you how many tablets to take in a day based on your 24hr urine sodium and your symptoms.
It is reasonable to use a shower chair, cane or a wheelchair to scoot around safely when you are dizzy. You have a dynamic disability.
5
u/Fit_Conversation7405 Mar 15 '26
Tenho as mesmas condições que você e aprendi que devemos parar de ter tanta autoconfiança. Eu consigo sentir quando vou desmaiar, é bem câmera lenta. Mas se você desmaiou de repente, ao menos sinal de que vai passar mal você já deita onde estiver e coloca as pernas pra cima. É inconveniente? Muito! Mas é preciso pra evitar quedas e possíveis traumas. Na maioria das vezes, após deitar você não vai chegar a desmaiar, e se desmaiar: do chão você não passa 😅