It is really taking its toll on me. I now prop pillows up and try to sleep upright, whenever I lay my head down my body goes into tremors or sitting at work. My eyes feel so tired and glossy all the time. This is definitely the toughest for me, I can manage my headaches with advill and aspirin. I wonder if ours Dr's felt what we were going thru, if he'd treat himself differently.
I'm wondering, smeyeln, if you've found the tips for coping with Chiari here? There are some ideas about making yourself more comfy for sleeping amongst many other tips.
I am really stuggling with my symptoms lately. I us u ally handle it but the feeling of being over stimulated comes often and I feel like crawling out of my body. It feels so icky, I twitch and shake and jump at every sound. Noise and light actually anything visual that is moving makes me shudder and want to curl up in a ball. I’m having it right now, I’ve tried Ultram no and then a lorazapam, still no relief. I have had a bad headache since Sunday too. And I can’t walk right, it’s so difficult to just takes so much effort to not fall over or stumble around. Sorry for the big vent, I’m just so discouraged
Rachelle
Hi Rachelle, I'm sorry to hear you're having a tough time at the moment. I was wondering whether using a cane would help you feel more steady when you're walking or whether, in fact, it just creates another obstacle to trip over?
smeyeln, how are you doing? Have you managed to get some rest?
Hello Smeyeln
I have to prop my head up too and the glassy look in my eyes…I’m also getting bad dizzy spells daily. I sleep about 15 hrs a day. It’s taking its toll on me as well as my relationship…no one understands this or my symptoms. Like I’m faking or something…I’m about at my wits end…
Hello Jules thanks for asking. I work at a clinic and started getting this numbness from the bottom of my head that went to the top of my head and then my heart beat took off. One of the Drs. Called an ambulance it was up to 155 bpm. Anyhow bad day . They gave me a low dose of xanax which seems to help. I'm not sure if it's anxiety or not and the E.R told me to follow up with my neurologist. He ordered an MRI of the cspine and tspine with contrast. I really hope this will give them the reasons for all these crazy symptoms. My left arm periodically goes numb and I guess after my nerve conduction study he said my left leg is weaker and something about my spine unstable. Anyhow I had my MRI's YESTERDAY. It seems like I have non stop ringing in my ears last few weeks. Which to me is annoying,but not as bad as these internal tremors, fatigue and my feet hurt. A lot of people don't understand, but that's ok. Im just hanging on the best I can. I just hope they figure this out soon. So I can have a life. Thanks so much for caring to ask, but I have found sleeping on my right side helps. I just don't want to miss anymore work and at this rate it's worrisome.
Jules G said:
Hi Rachelle, I'm sorry to hear you're having a tough time at the moment. I was wondering whether using a cane would help you feel more steady when you're walking or whether, in fact, it just creates another obstacle to trip over?
smeyeln, how are you doing? Have you managed to get some rest?
I know its definitely tough, I'm so glad that there are people on here that understand. But I can't let what other people think bother me. It is what it is and hopefully it won't last forever. That's what I'm counting on. I just lay around most of the time also. I try to watch entertaining movies.
Hiating this thing said:
Hello Smeyeln
I have to prop my head up too and the glassy look in my eyes...I'm also getting bad dizzy spells daily. I sleep about 15 hrs a day. It's taking its toll on me as well as my relationship...no one understands this or my symptoms. Like I'm faking or something...I'm about at my wits end...
Smeyeln
Do they currently have you on any Med? I’m on topimate at night it helps me sleep sound it helps curve major migraine (didn’t prevent) also during the day walmart brand excedrian is really good for head ache pain. When my head aches get in cycles that won’t stop my neuro doc puts my in hospital and mixes what he calls a cocktail of 4 meds to knock it out. Hang in there remember it’s a life time illness you have to be your own advocate or it will consume your life!
Hi, Deena, they gave me Lamictal and after the first time I took it, it was the first time in along time that I actually felt normal as in alert. I loved it, the only problem was my right arm was burning and itching. When I first picked up the prescription the pharmacist said that if I get any rash I'm supposed to go to the hospital. So I haven't taken it sense and have left two messages for my Dr. and they still haven't gotten back to me. I'll look that med up. I'll try anything to give me that normal feeling, but don't want to end up in the hospital over it. Just so frustrating that they don't call back. It's really affecting my life and worried im gonna not be able to work soon. Thankfully I'm only working 2 days a week,but it's getting harder and harder to maintain just that. I take Advil, Excedren and Norco for pain and headaches. Oh and I found sleeping on my right causes less internal tremors,but the ear ringing is all the time now. I'm just waiting for my results from MRI on my cspine and t-spine. I feel like a nuisance to my Drs sometimes. They just don't they realize how bad I'm feeling and it discourages me to call them when they don't return my calls.
Deena said:
Smeyeln
Do they currently have you on any Med? I'm on topimate at night it helps me sleep sound it helps curve major migraine (didn't prevent) also during the day walmart brand excedrian is really good for head ache pain. When my head aches get in cycles that won't stop my neuro doc puts my in hospital and mixes what he calls a cocktail of 4 meds to knock it out. Hang in there remember it's a life time illness you have to be your own advocate or it will consume your life!
Hi, Deena, they gave me Lamictal and after the first time I took it, it was the first time in along time that I actually felt normal as in alert. I loved it, the only problem was my right arm was burning and itching. When I first picked up the prescription the pharmacist said that if I get any rash I'm supposed to go to the hospital. So I haven't taken it sense and have left two messages for my Dr. and they still haven't gotten back to me. I'll look that med up. I'll try anything to give me that normal feeling, but don't want to end up in the hospital over it. Just so frustrating that they don't call back. It's really affecting my life and worried im gonna not be able to work soon. Thankfully I'm only working 2 days a week,but it's getting harder and harder to maintain just that. I take Advil, Excedren and Norco for pain and headaches. Oh and I found sleeping on my right causes less internal tremors,but the ear ringing is all the time now. I'm just waiting for my results from MRI on my cspine and t-spine. I feel like a nuisance to my Drs sometimes. They just don't they realize how bad I'm feeling and it discourages me to call them when they don't return my calls.
Deena said:
Smeyeln
Do they currently have you on any Med? I'm on topimate at night it helps me sleep sound it helps curve major migraine (didn't prevent) also during the day walmart brand excedrian is really good for head ache pain. When my head aches get in cycles that won't stop my neuro doc puts my in hospital and mixes what he calls a cocktail of 4 meds to knock it out. Hang in there remember it's a life time illness you have to be your own advocate or it will consume your life!