Vertigo / Dizziness :: Occipital Neuralgia Lightheadedness?
Apr 15, 2015
I had bad head and neck pains and lightheaded/dizzy days for about 18 months. Would last a day or two then feel fine in between. Held down a super full time career and ran a home really well. Was successful etc. But since xmas when I had a major headache/pain in the back lower part of one side of my head which started boxing day and went on and on I saw a neuro who thinks it is occipital neuralgia. On gabapentin and awaiting some procedures in theatre to help (I hope!) Anyone else have this out there?
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My friend has had diagnosed with occipital neuralgia. I am now living in my country of origin because I developed Parkinson at the age of 28. I kept receiving medication in the UK but opted out for DBS at this clinic abroad. They were so great that they offered me a job as I recovered. I told the doctors about my friend and they told her to come over for something called peripheral nerve surgery as they had a doctor visiting from the States. She initially exhausted all medication therapy and also nerve blocks, I think she used botox did not help her. Now she is migraine & headache free, happy, smiley person.
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For nearly two years now, I have had a severe pressure pain at the base of my skull on the right hand side of my head. It has steadily got worse, often flaring up whilst I have been in the gym, but now, like tonight, it has been throbbing/stabbing so badly that I am unable to sleep.
I have been back and forth to my doctor about 5 times so far and every time she has sent me for a blood test and concluded that I have low iron and to take supplements for that. My whole family are susceptible to iron deficiencies and I am a regular blood donor who has never been turned away, so I am confident low iron has nothing to do with it.
I was getting quite frightened that I could possible have an AVM in my head, or something putting pressure on my skull, so after much persuasion, my doctor referred me for a CT scan that came up 'normal'. She called me and suggested that I keep taking iron tablets as this must be the cause of my 'headaches'.
I do NOT have a 'headache'!! I keep reiterating to my doctor that it is a constant pressure in that area, sometimes my head even hurts to touch, but she is insistent that it is a headache. Occasionally I get a pain behind my right eye and over the top of my head, so I am getting a lot better at wearing my glasses any time that I am reading or studying. I have looked online at my symptoms, and I think it could possibly be occipital neuralgia - does anyone have symptoms like this? I have looked on other threads but there seem to be a lot of associated physical symptoms, for me it is just the head pain.
If you would believe it, my doctor actually asked me if I wear my hair up at night as she thought having my hair in a loose ponytail could be causing the pain. When I said I wanted a scan, she told me she would 'have to make something up' that sounded worse than what I told her because if she sends a person for a scan and it's not serious, she gets a slap on the wrist, as scans are expensive and she can only request three per month.
I am going back this week to discuss occipital neuralgia with her (let's hope she knows what it is!) and to insist on maybe an alternative treatment to injections or meds - maybe acupuncture?
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Some of you might have read my ongoing battle with constant dizziness/lightheadedness and general feeling of being off balance along with the usual symptoms of anxiety thrown in for good measure!
I thought after having to clear CT scans, seeing an ENT doctor twice, having an echocardiogram and wearing a heart monitor for 24hrs and having a scan on my neck and numerous other checks and bloods that I would start to feel better knowing that everything is checking out to be fine but unfortunately not it's just not going away just when I think that things are improving and I have a good day it comes back and bites me in the backside today being a good example I've felt OK all day then go to bath my kids and bang it hits me, I go all dizzy and my body feels very heavy and like I'm being pulled to the right all the time then I go into panic mode and worry about what is happening to me, how I feel and what if I pass out, I'm so sick of worrying about what's going on all the time it's taking over my life!
I also had a call from the docs about some bloods I had done last week they want to see me so wondering if anything has showed up on them!
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I have had horrible migraines for 10+ years which have become chronic daily headaches, manageable, but daily. A year ago I started having horrible pains at the base of my skull on the right side, some days it is a horrible stabbing pain, some days it is just a dull ache, but it is always there. I saw my neurologist in May about the pain since it just would not go away, she really had no ideas for me, she thought it might be a pinched nerve but said she really didn't know, she started me on nortriptyline, after being on the nortriptyline for 2 months and no change, she switched me to gabapentin, I am now taking 1200 mg 3 times a day. Some days I notice a difference, other days no change at all. My Neurologist said to stay on it and it should be helping. About 3 months ago the same type of pain started on the left side of my neck, about 1.5 inches below the base of my skull, closer to the middle by the spinal cord than the outside of the neck, it felt like a muscle knot that wouldn't go away, for the first few weeks, thinking it was a muscle knot, I was trying everything to get the knot to go away, after no relief with heat, massage, ice, I saw my neurologist and basically demanded that we get an MRI to see what was going on, she said she didn't think that was necessary, but ordered it anyway. She said my MRI looked totally fine and that i should still stay on the gabapentin, but no more help than that. After that I decided to find a different doctor. I started seeing a physiatrist, specializing in neurologic issues. My first appointment with him was fantastic, right away he said from everything i am describing i have occipital neuralgia. He explained what it was, and that it is a tricky thing to get under control, and he really couldn't say what is causing it. He said that the gabapentin is what he would prescribe, and it probably is helping, just not taking the pain away totally. He did prescribe a cream to apply to my neck, that he said he has great results with. He said he likes to try this first before doing any injections. It is a special compound cream that is specially made at a pharmacy he uses, its a mix of baclofen, gabapentin, ketorolac, and lidocaine. Its hard to tell if the cream is working, kind of like the gabapentin, sometimes it feels great, other times the pain is the same...
My true issue and reason for posting is, I have had a bad headache on the right side of my head, it moves from the right base of my neck, around my ear to my front temple area. Throughout the day it is in a different spot and I can pinpoint exactly where it is, it feels like someone is stabbing a knife right in that area, but it lasts for hours, throughout the day it does get a little "better", but i can always feel it, when it gets "better" it just feels like a massive pressure in that area. I have been a headache sufferer for as long as i can remember, but this headache is different than any headache I've ever had, and it going on day 19. I have tried everything; my many different headache medications (including an injection i give myself), I've taken a dose pack of steroids along with some anti nausea medication my neurologist gave me, i have gone to get a DHE treatment from my neurologist, i have gotten a toradol shot, and pretty much anything else i could think of, and nothing is kicking this headache. After doing lots and lots of online research, it leads me to believe that this is related to my occipital neuralgia, not a "normal" headache. Has anyone has a headache like this before? Do you think it is related to the occipital neuralgia, or something else? Does anyone have any ideas to make it go away. Also, if anyone has any tips on dealing/treating neck pain from occipital neuralgia.
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Ever since I've contracted HSV2 my life has been a living hell! I've been having sharp pains all over my body , leg pains, itching sensation all over my body, and last but not least pains in the back of my head and neck which sometimes radiates to my scalp. can herpes cause this to happen? If so is it life threatening or deadly?
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Does anyone have problems with occipital neuralgia? I have been having headaches everyday going on 7 months now that are dull and cause shooting head pain. It travels from my neck, to the top of my head, behind my ears, and behind my eyes. I have had MRI's and CT scans, and everything has come back normal. I have gone to PT for 4 months and had 2 nerve blocks. Nothing has given me relief. I went to a new doctor yesterday and he suggested that I may have occipital neuralgia. I am desperate to hear about what has helped other people and to hear about how everyone else copes with this/if it has gotten better.
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I was told by my neurologist that's what I have which is fine I have a lot of the symptoms (burning in head, ache, sharp pains, etc.) however I would like to know if anyone else experiences a metallic taste with theirs?
Or bitter taste? Hard to explain the taste exactly but I noticed I only get this taste when my ON acts up.
My right cheek also feels numbish when it comes along. I have a nerve test for neuropathy in a few weeks (to see which kind I have) and have had CT/MRI of brain which was clear so the taste may be related to the neuropathy but it just seems weird it comes when the ON comes.
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I had this unit put in in Dem. 2013 but because of the lead trying to push through the back of my neck it had to be revised in August 2014. Was doing great until January 19, 2016 when the lead again pushed entirely through the skin on back of my neck. Now my insurance company will not approve for me to have another unit put back in. I was free 90% of the time with my unit in and now I am back to having so much pain in this area. It makes it very hard to have any quality of life except to wait around for another horrible burning pain that takes 3 mores days to overcome each time. Has anyone else had their insurance refuse this especially when it worked great?
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I have not officially been diagnosed with Occipital Neuralgia, but I am beginning to think that that is what I have been suffering from. I will be going back to a doctor soon (husband is military and we are currently getting ready to move to a new country...so it will be a few months before I settle and can get to specialist). In the meantime, I wanted some advice from others who deal with this. I am curious if this sounds like ON to you (I know you can't diagnose me...just curious if my story is similar to anyone else's) and what you do for the pain.
I am 25 years old right now. The headaches started when I was about 18 or 19 years old. It started on the right side of my head right at the base of my head and neck. I got them almost everyday. It was just a dull ache. Nothing awful, but definitely annoying enough that I would have to take advil (especially when I had class or work or something). As months went by and the pain continued, I started getting nervous that I had a tumor (I am a pretty big hypochondriac). I went to my doctor and he sent me to get a CT scan. Everything came back normal. The headaches continued. Went to a neurologist and got an MRI. Again everything came back normal. The headaches still continued. Went to physical therapy. Still not much improvement (granted, I don't practice the exercises he taught me very often). At this point, to be honest, I gave up hope. I took advil almost every day and learned to deal with the pain. I assumed it was just tension headaches. The pain has now gotten worse. The headaches are still only that one side of my head, but the pain spreads behind my ear and up to my right eye when it is at its worst. It feels like a deep ache and I constantly want to stretch or crack my neck or something (which doesn't work). I have a "knobble" that I use to massage the area. Applying a lot of pressure on it hurts...but in a good way. It sort of relieves the pain for the time being, but unless I take advil it will usually come right back and it will last for a few hours if I don't do anything.
I am a teacher and I obviously have to be at my best everyday. The pain makes it impossible, which is why I usually give in and take meds even though I KNOW I should not be taking it everyday. If I am just at home and have nothing to do, I try to massage the area and relax until it dies down.
Does this sound like it could be Occipital Neuralgia? Does anyone have any other idea of what it COULD be? I haven't had much help from doctors, so I sort of want to be armed with information the next time I go see one. I am sick of being told it's nothing when I am spending every day in pain.
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I had no idea what Excruciating Pain was. Does Radiofrequency Ablation in the facet joint nerve work?
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I have dizziness everyday while walking, standing as well as feeling off balance, unsteady on my feet like I am gonna fall over. I have had my ears checked by an ENT doctor in 2014 and he said I had meniere's disease so he treated it as that but medicine didn't help so went to another ENT doctor in 2015 who said I don't have meniere's disease but have hearing loss in both ears and did a test on my vestibular function which he said was normal so he referred me to a neurologist and I went and had an MRI done which was normal as well. I have had blood work done in November last year and my white blood count was a little high but not concerning and everything else was normal....no diabetes. Also had a stress test done on heart and was normal. I am at my wits end with this cause I don't know what's going on. I plan to see an eye doctor soon. Oh and I was diagnosed with anxiety 4 months ago but this dizziness and off balance feeling has been going on for 2 years now. I am on blood pressure medicine too. don't know what else to do. Does anyone have these same symptoms ?
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I was diagnosed Trigeminal neuralgia last July and MRI has shown a vascular compression of the nerve as it leaves the brain. My question is, I was prescribed Carbamazepine originally and had an allergic reaction within 3 weeks so was put on Gabapentin. I'm taking 1600 mg a day at present and can go up to 2700mg a day. My memory seems to be suffering and I get various other side effects such as vertigo. Recently though my finger tips have been swelling, turning red and painful to touch, the last few days my ankle has double in size and is also red, and I'm getting areas on the soles of my feet that are large marble sized and very painful to walk on. I asked my pharmacist yesterday if these could be caused by Gabapentin and she said there is a possibility?
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So I'm 8 months into my latest debilitating 24/7 dizziness. After a clear MRI, a neurologist suggested my imbalance might have a migrainous element to it. There is such a thing as vestibular migraine.
At this point, I'm willing to try anything, so the Dr has out me on Amitriptyline as a migraine preventative. I've been taking 10mg per night for the last 5 days (I can go up as high as 60mg by gradually dosing up).
I know it can have side effects that take a while to wear off and that it might not become effective for several weeks. But honestly, it's making me feel much worse already. I wake up every morning with a pounding head as if I'd drank a bottle of vodka, which is worse than the cannonball-head feeling I had already. Plus, I think it's making me woozier and dizzier than before (which was already so bad I've been off work for 3 months).
Has anyone tried it? Does it get better? I'm finding it really hard to cope with the side effects on top of how I'm already feeling. Many thanks.
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I'll start at the beginning last December I woke to go to the toilet and the next thing I new was my husband asking me if I was ok ( I had fainted) . Passed no remarks thought I had stood up to quickly, went to work the next day and felt lightheaded and even though my colleagues were talking to me I couldn't process what the were saying. I went to the doctor and explained what happened and she said it was vertigo. At this stage it was xmas week and I started taking serc but the didn't seem to be working. Went back to work in the new year and after 1 hour I was totally disoriented so I went back to the doctor and she sent me to a neurologists who said I had migraine. He prescribed me with amitriptyline starting at 10mg and I have slowly worked up to 40 mg but still not feeling right in the last few months I have facial numbness. My neuro is sending me to see a a neurophysiologist but my appointment isn't until February of next year and that's going private.
symptoms:-
Lightheaded /dizzy
Stiff neck
Blurred vision
Extremely tired
Stiff ankles and hip joints in the morning
Facial numbness
Pain in my head sometimes like ice cream headache but only a few times a day. Have had mri which was clear and all my bloods are normal
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About three months ago, I woke up with vertigo. I visited a doctor who told me there was nothing wrong with me and that the vertigo was probably due to labyrinthitis. That same night, I went to the ER due to a vertigo attack. Once again, I was told that there was nothing wrong and that I was having anxiety attacks.
In the next three months, the vertigo (spinning) stopped, but I was left with an off-balance sensation, like I was going to fall to one side. I also had a rocking/swaying feeling.
Those symptoms almost went away completely for a week. However, the vertigo suddenly came back a few days ago. I am feeling off-balance again. I have not visited the doctor, but I am extremely on edge because I am worried that there is something seriously wrong with me. I keep waking up with jaw pain and tense muscles.
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Hello, I just want some help with something that's been bugging me the last 6 months... I feel like I'm being pulled down to one side when I walk And I get light headed quite a lot.. this sparked off some serious anxiety problems (which I thought was causing the dizziness) but I've beaten the anxiety for the most part but the dizziness has remained .. I got a migraine yesterday and have been even dizzier and jolt awake quite a lot in the night .. I have no idea what could be causing this.. I can't stand for longer than 5 mins without feeling like I'm about to fall to the side .. can anyone help?
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I have just had my first ever vertigo experience, wow, hope it never happens again. Two days later and I'm foggy headed and a bit wobbly still. It woke me up at 5am and whenever I tilted my head left or right the room spun . I've just started with an osteopath for neck issues and it's been going well. Though this time my neck was really sore and developed a bad headache, this got worse for two days, then got the vertigo . The dr thinks it's from the manipulation as opposed to my ears, I do also have tinnitus which developed similar time of my mayor neck issues. All the info I look at points to ears, is anyone heard of vertigo caused by neck issues.
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I went to see my GP this week because over the last couple of weeks I was getting bouts of dizziness while resting (I can describe them as a swaying sensation) which comes and goes. I also have frontal headaches with this, the sort that you get when you are subject to bright light. I have been prescribed some tablets which I have to take 3 times a day so I hope that these tablets will clear the problem. I am also going to the opticians on thursday just to double check it's nothing to do with vision problems. I have scared myself today as I have googled frontal headaches and it comes up with brain tumour.
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Back in February I experienced an odd episode while driving down a bright highway where the light flashed between the trees constantly. I started seeing aura and it developed into a major migraine (I've had a handful of migraines in my lifetime only, not chronic ones- I've also been chronically congested for about 2-3 years). It seemed like after this that I started having headaches mostly on the left side of my head based mostly around the ear and neck area. My vision blurred and then fixed itself, but then I started having this odd sensation while driving, like my eyes didn't know where to focus. My head was really foggy like I couldn't think, and when I shook it it almost felt sloshy,like my brain was sloshing in a fish bowl. The dizziness then began to get worse while looking at any type of technology or tv. The headaches weren't that bad (except for that first one in February), but my anxiety quickly took over. I had an MRI without contrast just before Easter,and it was fine. At this point they made me appointments with a neurologist, but not until April 28. The more I started researching, I also made appts with an ENT on April 27. I was miserable for about 3 weeks, until my antidepressant began to calm me down. AT this point I could watch TV and look at a computer again, as well as drive, but was still plagued with this disequilibrium. On another of my ER visits, the doctor said my neck was extremely stiff and to do PT or chiropractor. I went to PT and she asked if I'd had any illnesses around the time this started. I'd had a very bad sinus infection and was put on 12 days of steroids, and it was about 2-3 weeks later that all this started. She mentioned Vestibular Neuritis, and I've been doing the vestibular PT ever since April 1.
Fast forward to now, my disequilibrium is somewhat better, but not 100%. I still feel funny when driving or riding in the car, and I'm terrified to go on any amusement park rides with my family. I finally saw the ENT last week, with the hopes that she'd be the missing piece. Well, she said she bet it was migraines and told me to go to the neuro. She did however, scope my sinuses and they were extremely swollen and told me to use saline and a steroid nose spray daily or I'd be needing surgery in 10 years. I went and bought the sprays, but was really sad after hearing the 4th person tell me this was migraines when I feel like this isn't. The next day I saw the Neurologist expecting to hear the same thing, but she told me she thought it was my sinuses. She wants me to continue the nose sprays and come back in 2 weeks, as well as continue the vestibular PT. I asked her about the Vestibular Neuritis, and she said people have extreme vertigo with it, and I haven't had that.
My question is those of you who have been diagnosed with VN, was your dizziness vertigo? Or did some of you just have a feeling of disequilibrium,like not knowing what to look at? Also, how long has it taken you to regain 100% function? I'm going on week 12 of this, and am starting to doubt if I'll ever be back to 100%.
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I am hoping to hear from people who are recovering from labrynthitis. I had my first episode of vertigo a month ago and am struggling to feel balanced again. The difficult part of it for me is knowing when to push and exercise my brain and when to rest. I have been going to work, but am finding that by about 2:00 p.m., I am spinning and very uncomfortable. If I work the whole day, my evening is totally awful - very very dizzy. Any suggestions?
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