Chiari Online Support Group

Split of a second migraine, dysphagia, fasciculations..Could this be Chiari?

First of all, great to find such a group here and thank you in beforehand with your honest opinion and feedback.

For the last 6 months I’ve suffered mild dysphagia for solids. It started off by bigger chunks of food getting stuck in my throat. I was able to couchg them back up and swallow again. In retrospect during the same time I had a weird numbness in my whole left arm that lasted for a day or so. It wasn’t anything crazy, but still clear, new and distrubing.

In August/September I seemed to develop some kind of neurological “panic” in my body. I had hundreds and hundreds of fasciculations all over. Bubbling, twitching and also cramping of toes. My left ankle went stiff and then I had some lost of feeling in my pinky and weird sensation in my lip and cheeck. Things calmed down, all the sensory stuff went away and my ankle is ok. Fasciculations stayed.

Now my dysphagia is somewhat worse. Smaller things get stuck. I’ve also developed a tongue fasciculations.

Well, why do I think Chiari could be an option? I’ve had from my twenties these really weird “migraine” attacks that have been labelled as migraine because there’s nothing else to call them for. If I lay on my stomach and lean on my hands, this massive pressure builds up my head, ears and eyes. Woosh-sound in my ears as the blood pressure feels like it’s going to burst from my ears and eyes. If I don’t escape the position ASAP I’ll get aura in my eyes. Like migraine. Then, directly dependant of the lenght of the “pressure attack” my symptoms follow. One time I was so MAD that it happend again I felt like “fu*k it, they say this is migraine so I’ll just stay here.” Well, big mistake. I couldn’t walk straight the next day, the back of my eye felt like stabbed and I couldn’t see properly with it for 24h or so. And I maybe stayed 5 more seconds in the position which caused me the problem…

For ten years, I’ve just avoided that leaning on my stomach (and hanging curtains, that did me once also) but somehow I’ve always thought that it’s not migraine. I have never ever in my life had a migraine without that and it happens INSTANTLY. Migraine can be triggered, but it builds up, it’s not split of a second thing.

Another, a bit more weird and debatable thing is that it feels like something is causing pressure to my windpipe. I’ve had it for a while, but some weeks ago I was laying on my bed about to get up in the morgning when I felt a pressure built up in the middle of my throat. Very subtle, not painful and quite quick. I had not time to react and was a bit too sleepy to have changed my position. Then, one ring(?) of the windpipe popped a bit forward and then another next (above or below it) did the same (plop, plop). The weirdest thing…

I know there are a lot of sinister options to my troubles and I’m under medical care. But there’s one problem; I was once taken an MRI after these migraines as they wanted to make sure it wasn’t TIA or something. And no chiari was stated then, and I’m wondering if it still could be? And if so, I don’t think the doctors will be easy to convince to look for it…

Also: I’ve never had any great pain anywhere. This aura thing is always followed with headache, but other symptoms like mild vertigo, eye pain and disorientingness (this is so not a word, sorry I’m not native) are more prominent.

Do think Chiari would still be worthy option to consider?

I forgot to mention that I’ve suffered from IBS for as long as I’ve had these “migraines”. When my swallowing problems started, something changed. My bowel went silent and constipated, first time ever. I’ve also had anal sphincter problems for years and that went worse also, I would pass gass without being able to prevent or feel it. I’ve also had these “inner tremors” in my pelvis area years ago, and those came back also. It feels like I have a mobile phone in my back pocket…

Sorry for this TMI maybe, but I felt I need to explain this as good as I can…

You have quite a list of symptoms. I do hope that you can get to the bottom of things. As you know, Chiari is diagnoses through MRI. Chiari was missed in my first MRI by the radiologist even though it was present and noted by the radiologist for the 2nd MRI. Diagnosis is difficult for Chiari folk. You have had an MRI. It would not hurt to have it reviewed by someone who looks at the actual images - another radiologist or a neurologist who will look at the images not just the written report.

Of course, medical professionals do not like it when you are diagnosing yourself through Google. Be careful in how you word requests or possibilities in diagnosis plans. Perhaps you need a new MRI depending on how much time has elapsed since the first one.

Good luck