Since the start of having this condition i have always had sore shoulders and neck. My neck also make sounds like grinding or crunching with the bones and i hear all sorts of clicks in my head when i move it. I began to wonder if it was my neck causing the problems because its hard to remember which came first.
Does anyone else have this trouble?
Oh yeah! I dont really get headaches with my migraines anymore (used to when I was younger), the pain is situated more on one side of my neck (usually left side), upper back, shoulder and arm - dizziness, shortness of breath and lightheadedness accompanies it. For years I thought I was having heart attacks because of the way the pain radiated but the neuro told me that it was the way the nerve in the hippcampus (sp?) was being hit. It still freaks me out so I have to keep reminding myself it’s not my heart, it’s my head! I also get lots of clicks and cracks when I move it.
I find that frequent stretching and breaks from the computer help as well as massage therapy.
AMH-
I have been reviewing your posts and I have the exact same symptoms as you. All of it. I am almost on month 7 of this hell. It started after a chiropractic neck adjustment. I have never been the same. The neck was definitely the trigger for all the false sense of motion, clicking in my head/neck, eye issues, anxiety, internal shakiness, rocking/swaying, elevator sensation, etc. In the beginning, I felt pressure in the back of my head and I can never put too much pressure there or I’ll get a pressure headache and that will increase my sensations. Little things can increase the rocking…such as stress, sneezing, lifting, jumping, extending my head up, down or to the left, stretching neck, bad posture, massage on my neck. My neck is super sensitive. Did you have an accidents/injuries to your neck that could have triggered MAV?
After a long wait to get into UCSF, I was finally diagnosed by Dr. Lustig with MAV. He prescribed Nori and I started it last night. So far so good, just notice my heartbeat gets a little fast at times.
I am hopeful, but I did start on Zoloft in March on a low dose of 12mg and stopped it in April at 50mg due to side effects. The week after I stopped, I felt a few hours of remission. Then I felt improvement to about 85%. My PT and Osteopath were working on me too so not sure how it got better.
Unfortunately I was in a whiplash type even in May and everything came back full force. So frustrating!
Joanne
My neck and shoulders are constantly sore an aching. I’ve been seeing a chiropractor for a while which is helping with some of it, but I fear nothing will get rid of it completely. I also hear noises in my head when my neck moves. It’s odd, because I’ve always hated things around my neck ( had thyroid problems several years ago) and wearing scarves makes me uncomfortable. I wonder if it’s associated to migraines or to something else?
I too have very sore neck and shoulders, I would describe them more as aching or tired all the time.
I were a lanyard for work with my ID pass on it to get in the doors etc and the weight of that is too heavy. I tried describing this to my doctor, and that some times when I’m sitting I feel like my neck isn’t strong enough to hold up my head, I have to prop cushions behind my head so that I am resting. My doctor though, doesn’t seem to understand.
I also get a grinding noise when I move my head, like my neck and shoulders always need a good massage. Might book myself in actually and see if that helps…
Hi joanne, I havent had any accidents or injurys to my neck before this all started out of the blue and I can’t think what it was, I have had some chiropractic adjustments but that was back in October/November time after all of this started in June, I thought it might help the symptoms but after 6 weeks of treatment I felt no better and didn’t go back. Today I had my results from my MRI scan, it showed that I had no abnormalities apart from total opacification of my left maxillary sinus, basically it is blocked, my neurologist said this could be contributing to my symptoms like the head pressure so he gave me a decongestant to use until I get an appointment with ENT who may or may not drain it. I also spoke to him about my neck and he has referred me to a physiotherapist for treatment. What has ur doctor said about your symptoms? Do u know what it is that’s wrong with ur neck that’s causing ur symptoms?
Anne Marie
Hi all,
just thought I’d mention that I had real persistent, constant neck ache/pain, and tried everything to fix it - acupuncture, massages (some with nerve-end trapping), chiropractors, and physios. The last physio I saw was absolutely superb. We discussed MAV and he also tried to check for compromised arterial flow, etc. After a few sessions, my neck felt fantastic - smooth and loose - like I could turn it through 180 degrees! He gave me fantastic stretches as well.
But…the neck and upper shoulder ache would ALWAYS return. Turns out it was the MAV causing it, and the aching has all but disappeared with the use of MAV meds!
Best wishes,
Tony.
Hi there…
Yes, things don’t really seem to make me better no matter what I try! It probably is mav, but I don’t have any food triggers that I am aware of. I never eat fast food or drink alcohol, eat chocolate or cheese. The only thing I drink is water. Hmm…
The doctors think that this is all migraine related. I am not so sure, although I don’t have a clue what’s wrong with me. All I know is that I feel a strange pulling in my neck sometimes and the back of my skull is very sensitive. I hear clicking sounds all the time. And I am so off balance especially lately. I feel false sense of motion all the time. For the past few days I have been feeling really lightheaded too. It might be the Nortriptyline that I started a week ago. I noticed I felt floaty and lightheaded at night when I took it, but now it seems to be happening more during the day too. Really odd. I hope it’s a symptom that will go away soon. Although I’m not even sure that’s a side effect of Nortriptyline or my dizziness is just getting worse.
Anne Marie - You’re on Nortriptyline, right? What kind of symptoms were relieved with that medication and at what dose? When did you notice that your symptoms stopped being constant?
I am so sick of this thing and so discouraged. I hope this Nortriptyline works if I do have mav. I can’t help but wonder if it has something to do with my slight straightening of my cervical spine. With PT work, the curve came back but now it’s straight again from the whiplash. I just had an appt with my Neurologist at UCSF and she is sending me for another cervical mri with contrast.
Thanks for letting me vent!
Joanne
Hi Joanne, I started on 10mg in jan and each week added 10 until I got to 50 after 5 weeks, I now take 50 every night. It was in the middle of feb when I remember lying watching tv and I didn’t feel the sensation that I have that feels like Im in an elevator, before then it would have every few seconds constantly througout the day and it was my worst symptom, after that day the symptoms came back and then left again and have been like that since so I have my good days and bad days, I also don’t have as much pressure in my head and behind my eyes, I also don’t have the brain fog in work as much anymore either. I seem to only get a tight neck and sore shoulders when I feel really bad and if I’m feeling not so bad then my neck will be loose also. I wonder now if it’s my blocked sinus that is causing the sounds I hear in my head and my neurologist also said it could be triggering the migraine. I did the migraine diet for about 2 months from jan to end of feb but stopped it then under the advice of my doctor and I still felt the same before and after so I know that food is not a contributing factor for me. I don’t remember feeling any worse at the beginning when taking Nortriptyline but then people have different side effects so it’s hard to tell if it is that or not for u. Let me know how you get on with it but it definitely took me about 5 weeks to feel any benefit and that was at 50mg. R ur symptoms constant, what dose r u taking of nori?
— Begin quote from “bexta89”
My neck and shoulders are constantly sore an aching. I’ve been seeing a chiropractor for a while which is helping with some of it, but I fear nothing will get rid of it completely. I also hear noises in my head when my neck moves. It’s odd, because I’ve always hated things around my neck ( had thyroid problems several years ago) and wearing scarves makes me uncomfortable. I wonder if it’s associated to migraines or to something else?
— End quote
I also hate things around my neck! I can’t wear my jean jacket because the collar upsets me. It’s too tight for my neck. Even scarves. I wonder if it’s my disc protrusion at C5-C6. I also heard that could cause disequilibium so that might be another trigger for me. I wonder how many people with MAV have that?
— Begin quote from “jor”
I too have very sore neck and shoulders, I would describe them more as aching or tired all the time.
I were a lanyard for work with my ID pass on it to get in the doors etc and the weight of that is too heavy. I tried describing this to my doctor, and that some times when I’m sitting I feel like my neck isn’t strong enough to hold up my head, I have to prop cushions behind my head so that I am resting. My doctor though, doesn’t seem to understand.
I also get a grinding noise when I move my head, like my neck and shoulders always need a good massage. Might book myself in actually and see if that helps…
— End quote
I also feel that my head is too heavy for my neck. It sometimes feels like my head and shoulders are protruded forward abd slightly up if im just sitting. When i notice it, I correct my posture. Did the massage help with the grinding noise? If it clicks a lot, I will get more head pressure. I am always hearing clicks in my neck and head when I turn in bed or move in general. I’m starting to hear them in my shoulders and back too which is disturbing! My neck is unstable for sure. A gentle massage seems to help but sometimes massage can make it worse too.
— Begin quote from “Amh”
Hi Joanne, I started on 10mg in jan and each week added 10 until I got to 50 after 5 weeks, I now take 50 every night. It was in the middle of feb when I remember lying watching tv and I didn’t feel the sensation that I have that feels like Im in an elevator, before then it would have every few seconds constantly througout the day and it was my worst symptom, after that day the symptoms came back and then left again and have been like that since so I have my good days and bad days, I also don’t have as much pressure in my head and behind my eyes, I also don’t have the brain fog in work as much anymore either. I seem to only get a tight neck and sore shoulders when I feel really bad and if I’m feeling not so bad then my neck will be loose also. I wonder now if it’s my blocked sinus that is causing the sounds I hear in my head and my neurologist also said it could be triggering the migraine. I did the migraine diet for about 2 months from jan to end of feb but stopped it then under the advice of my doctor and I still felt the same before and after so I know that food is not a contributing factor for me. I don’t remember feeling any worse at the beginning when taking Nortriptyline but then people have different side effects so it’s hard to tell if it is that or not for u. Let me know how you get on with it but it definitely took me about 5 weeks to feel any benefit and that was at 50mg. R ur symptoms constant, what dose r u taking of nori?
— End quote
I am only at 10mg at day 10. I started to have an increase in dizziness and a faster heartbeat with a weird palpatation here and there. My Dr told me to get off and start Topamax. I want to stick with Norti for another week since those side effects got a little better in the past few days. I am thinking of increasing my dose tomorrow though. Did you notice an increase in symptoms when you increased your dosage each time?
Yes my symptoms are constant 24/7. When I am sitting I feel a slight rocking in the lower part of my back and butt. When I am standing I feel the rocking/swaying in my legs and feet. When I am lying down I feel it in my legs, abs, back depending on how I sleep. The intensity increases with movement. If I turn my head up, left or down, the rocking also increases for awhile. Strange!! Do you get that? Is your rocking constant even on Norti?
I had the constant elevator sensation for the first 4 months and once I started Zoloft that went away quickly and it only comes back if I injure my neck or am really upset. It was one of my worse symptoms because it would mess with my sleeping. It would startle me as I would try to drift to sleep.
I think the worst symptom of all is the sudden dropping sensation that comes out of nowhere. Freaky I tell you. I only got it a month ago and fortunately it only happened 3-4 times.
I found increases in Nortriptyline dosages caused me to feel slightly off for a day or two, but nothing compared to what Topamax does.
I started off with topamax and it really spaced me out at the beginning and give me real brain fog, after a while this went away but I started to get significant hair loss so had to stop it, the only other side effect was that fizzy drinks tasted horrible. I didn’t notice any increase in symptoms when increasing the nori, i never felt any better or worse for the first 6-8 weeks, then I started to see improvement. I too feel the sensation of movement in my legs and butt, and also have started to hear cracking in my lower back that I never used to hear.
My symptoms are not constant anymore but for the first 8 months they were, but I’ve never had a day without the symptoms I always feel something throughout the day that reminds me that I’m not right. I don’t feel any increase of symptoms when I turn my head, I actually feel less symptoms when I’m moving because I think it sort if cancels out the false movement if I’m actually moving if that makes sense?
Yes this totally makes sense. For the past few weeks my symptoms slowed down. Today I turned my head to the right and up to look at something and heard a click/pop in my neck and I am rocking more than ever. I definitely think this neck thing is causing the rocking sensation. I can recall a few other times in the past 7 months that this occurred. I don’t know if a disc is compressing a nerve or a ligament is unstable, but the sound came from somewhere between c4 and c7. I even remember stretching caused it to pop/click loudly and then I was more off balance for a long t
Has anyone else noticed this?