Is it truly possible to get worse? I’ve steadily been gettin more frequent migraines, which is what prompted me to see my family doc in January in the first place, which led to my seeing an NL and getting an MRI, then a diagnosis… Anywho, I’ve been getting more and more migraines (nearly daily now) and my rushes of pain from bending over, exerting myself, laughing etc are getting MUCH more frequent. This has all been getting worse since around December, but it feels like it’s getting worse-- especially since February started. Just this weekend, I’ve started having really bad spells of this odd dizziness (I’m not sure what to call it) where I feel almost faint and if I move too quickly or my heart rate rises, I get short of breath and my head spins. Today, the feeling has not gone away AT ALL, and my arms have occasionally been tingling, which is very weird for me as I’ve never felt that before, but not as weird as my tongue and jaw (basically all over the bottom part of my head) tingling. It’s kind of freaking me out, which is why I’m posting. Is any of this possibly Chiari related? Is there anything I’m doing wrong, or anything to reverse/stop this? I can’t focus when I’m in this dizzy state, and only laying down for a long time seems to help. I do have the order for a neurosurgeon appointment, but they have yet to call and confirm my appt.
I feel like I didn’t explain the dizziness of whatever it is well enough: It’s honestly like my whole body is dizzy and spinning, even when I’m not moving. It’s nauseating. I have never been drunk, but I imagine this is what drunk people must feel like, because that’s what my family says I look like when it gets bad and I try to walk. Ugh!
Hi LauraLea! I don't get the dizziness as bad as you do, however, I do get the headaches, burning pains in back and arms, and tingling in my hands and feet. As well as a long list of other symptoms. Now a few times I have gotten the shivers that I could not control. My jaw and arms wouldn't stop shaking. Lasted for several min and then when I laid down and relaxed it finally stopped. This has happened to me only twice and I was outside in the cold. So I'm not sure if it's related.
Sorry to hear things are getting worse for you. I'm in the same boat right now. Trying to find another NL. Not happy with the one I have now. You should call your doctor and confirm your appointment. I wouldn't wait on them. Good luck! And keep us updated on how your doing. Thanks!
I have had spells of that dizziness all that helps is laying down and finding a focal point because if you close your eyes it’s like you’re on a ride its horrible even when you walk you have to look at the ground I always have a slow spinning sensation always that’s why I fall a lot I think. But sometimes it’s worse and I get nauseous but that with the blurry vision and confusion is the worst I’m sorry
I called my family doc because my mom is concerned about how dizzy and short of breath I’ve been and the nurse scheduled me an EKG right away. I’m headed to do that now. I’ll keep y’all posted!
It's common for symptoms to progress as time goes on! I hope you get your appointment with the NS soon!
Also---- I think it should be illegal how un-informed neurologists are. I just knew in my gut that we can get worse, but my NL told me flat out that my CM was nothing more than a cosmetic deformity, “just like a bump on your nose or something” and that it didn’t cause any symptoms (although he didn’t have an explanation for them— but plenty of pills!) and that it would never get worse. He ordered another MRI to check for Syringomyelia but told me that if I do have it, it’s no biggie and that we won’t do anything for it since it doesn’t cause any trouble. He later cancelled the MRI and didn’t bother to inform me. I won’t be seeing him again, needless to say. Why aren’t neurologists informed? Why are they allowed to keep feeding us crap like that? It’s annoying
Of course you are going to get worse over time some faster than others. Depression can make them seem worse also and you can talk yourself into feeling bad. Try not to depress yourself find a friend or a therapist for help. This is all frustrating but you have to keep your head until you find the right doc. Keep this in mind " When life knocks you down get up brush yourself off and tell it that it hits like a bitch. Hang in there
That made me giggle I needed that! I’m trying to keep positive, and during the day it seems fine, but at night is usually when I get depressed. Maybe I can find something cheery to do before bed so I don’t get so emotional. I’ve found that if I can get myself distracted from everything, then I don’t get as depressed. Of course, I still slip up, like last night and a few nights last week. All of the support here helps a LOT. Thank you, everyone, so much! Without these stories to give me hope, and the words of encouragement (plus the knowledge that I’m really not alone) I would still be in bed, unable to face the world. My yorkie-poo who won’t let me sleep and demands attention helps, too. I swear sometimes it feels like she KNOWS when I’m too upset to function. Anyway, I hope to find some long-term relief and I hope y’all all do too!
Girl let us know we’re here for you and we have all sat I’m your chair. That’s why we understand we live it with you when I was reading your post I was thinking of me three months ago in my room in a house full of people seeing three doctors that week but feeling utterly hopeless I will never in my life forget that moment or how I felt. I promise the days get brighter my nl is a freakin retard she has no personality and I swear she wears open toed shoes to work and it drives me insane!!! I just want to tell her that with all the money she makes she AT LEAST could get a pedi if she’s gonna show her dogs to her patients… But alas she’s to busy telling me (with no eye contact of course) that there is SOMETHING wrong with me it’s just NOT chairi. Oh lawd I can’t take my husband to her office anymore he’s going to find himself on the news if I take him one more time he just sits in the corner and turns red he’s so damn mad and I just am super happy and pretend she is to it is soooooooooo. Freakin funny I should record it its like a parody.
Rotfl!!! That sounds like a parody! Open toed shoes and ugly toes… shudder I can’t understand a single word my NL says! He’s from like South America, and that’s fine and all, but a lot of his accent is FAKE - proven by when he talks to his nurses or on the phone - but he still talks to me like its his first week speaking English! Lol, it’s so great to have people living this with me, I can’t say it enough!!
On another note, after talking to my doctor earlier (family doc, smarter than my NL) she decided not to do the EKG, but told me she thinks my recent MRI probably changed the pressure in my head or some medical mumbo jumbo and caused BPPV (benign paroxysmal positional vertigo) which she explained is basically a fancy way of saying I get dizzy because something got shaken up in my head. I have some motion sickness mess that are helping quite a bit now— thank goodness!!