New to the community and looking for some advice and support

1

Hi everyone.

I’ve been lurking on these forums for a few days now, and finally decided to post and say hello and share my story. Everyone seems so supportive and helpful here, and it’s definitely something that is needed when going through all the issues we go through.

A little backstory:

I’m a 25 year old female who has always very active and ambitious. On January 21, 2016, I was running some errands with my mom, and while sitting down, I suddenly felt a very intense sense of motion. My head felt like a fishbowl and it seemed like my surroundings were sort of like vibrating. I started getting an anxiety attack as I thought I might be having a stroke or something! I went to an urgent care and they told me it was anxiety and I needed to eat something. I went home and ate and went to bed and a few hours later it was gone and I went on with life. The next day, I was in a movie theater and it hit me again! I went to another urgent care and they said it was probably a sinus infection. They sent me home with antibiotics which did nothing. I just kept getting worse. At this point it was 24/7 vertigo and I’m trying to think, what the heck did I do? What’s going on? And then I remembered that prior to this event, a few weeks before, I was having major issues with my neck and upper back. That is really where all my medical issues started to really happen.

Four weeks before my vertigo hit me, I woke up one morning with a horrible neck ache. It was so bad that I couldn’t even turn my head to the left which was very unusual. I went to a chiropractor, and within a few adjustments I was able to rotate my neck again, but then my upper back was killing me. This slowly started traveling down my arm which became very achy and tingly. I started getting scared, but the doctors said it was just a pinch nerve. I just started taking pain meds everyday to function and forget about the pain. The morning before my vertigo hit, I woke up with a horrible headache in the back of my head (which is rare; I usually get them near my sinuses), and my neck was hurting again. When I was sitting down, my neck was extended downward looking at my cell phone, and that is when this all started.
I also remember a year ago when I was at work, my head (again) was extended downward looking at a binder, and I felt a full 30 second episode of spinning vertigo. It was to the point where the whole room was spinning and my eyes could not see straight. Thankfully, it only lasted 30 seconds and never returned. I went to the doctor to just make sure everything was ok, and nobody was concerned Because of these events, I initially thought that this all has to be related to my neck.

Since January 21st of this year, I have since been to 3 GP’s. My anxiety was through the roof the first 3 weeks of this. I was in bed most of the time and could hardly function. The first two GP’s said I had BPPV and to go home and wait it out. After researching BPPV, I knew that was not what I had. BPPV is characterized as having spinning vertigo (did not have), episodes only (mine was constant), nystagmus (did not have), and the testing could usually indicate which ear is the problem (nobody ever tested me). I tried explaining this to the doctor the second time and he said I had a “mild” case, and that is why I was not spinning. I then asked why I was not referred to physical therapy, and he didn’t have an answer for me and gave me a referral so I could get the epley maneuver done and not just sit at home in misery. Once my physical therapists told me they did not think I had BPPV, I went to see another doctor who decided to give me an MRI and blood tests. Everything was fine. After my MRI, I was referred to a neurologist but I had to wait 3 weeks for the appointment (which is pretty good I think!). During the 3 weeks, I was searching for answers online every single day. I heard about NUCCA which I was reluctant to try, but after learning that they don’t crack, and my insurance covered it, I decided to do it.

I have been going to NUCCA now for about 4 weeks, and I actually have seen some improvement. First, I used to have TMJ to the point where every time I opened my mouth, my jaw would pop. I haven’t had my jaw pop for 4 weeks. My neck/back/arm pain is all completely gone. As for the vertigo, since seeing the NUCCA, it has gone from an 8 (10 being the worst it can be), to a 4-5 depending on the day. My anxiety is also almost completely gone. I am so fortunate that I only pay $5 per visit, and the office is only 3 minutes away from my home. So thankful for that as I know many people travel and spend a lot of money for these appointments. I am hoping within 4 more weeks I will seen even more improvement.

However, I had my appointment with my neurologist two days ago, and he did see that my C1 was shifted out of place, and told me to continue with NUCCA as long as my neck is not being cracked (which I will never do again), and also told me that my MRI scans showed some random spots of density which were signs of past migraines. I never thought about migraines, and then I remembered that last year between August-October (which was very stressful for me) I was having constant headaches like 2-3 times a week and I thought they were tension/sinus related. My neurologist said those were all migraines. I haven’t had a really bad headache since October, up until the morning that my vertigo started. he said it is possible that the migraines and vertigo could be caused by the shift in my neck, yet he also though it could be Vestibular Migraines which was so strange to me since I haven’t been having any migraines during all of this vertigo. He also did tell me to to clean up my diet, get my sleeping pattern more normal (which I DO need to work on), take vitamins, exercise, etc and that within a couple of weeks if I am still having problems, we would start with some medications. The first one he mentioned to me was Amitriptyline. So, for now it’s nice to know that I have a plan B if the natural route doesn’t work for me.

I’m wondering if this sounds like VM? My main symptoms are constant vertigo but no spinning (feels like i’m on a whobbly boat or watching cloverfield non-stop :stuck_out_tongue: ), a bit of light sensitivity, anxiety (not so much anymore), and brain fog (also not so much anymore, but a lot before.) I also once in a while feel that pressure but lately when I feel it is usually just goes away.

In closing, whatever this is, it has really turned my life completely upside down. I’ve moved back in with my mom, I’ve lost my new job (that I was never able to start because of the vertigo), and don’t do a lot most days. I have been able to start driving again about 3 weeks ago which is awesome and find that it’s harder to notice the vertigo while in the car. Many of my friends don’t understand what I am going through, and that has been really difficult. I feel like everyone thinks I am being dramatic with the exception of my mom and two good friends who know I would never make this up.

Anyways, that’s it. Thank you for reading, and I hope to get to know everyone soon!

  • Michelle
1 Like
2

Hey Michelle,

My experience is the same as yours pretty much. Night and day is how the thing started for me too - it hit me super suddenly when I was walking home from a cafe one day in the UK after a long, intense day of work where I was really stressed out. I think that the stress I was under may have reactivated a virus in my cranial nerves that damaged them and has caused some type of nerve damage/inflammation that I have to now medicate to get under control so that my nerves (ocular-eye, cochlear-hearing, and vestibular-balance) nerves don’t overreact to everything and make me dizzy, hear clicking and crackling noises, and have eye pressure and then a horrific trigeminal nerve type of migraine (centered behind my eyes and into my jaw etc) if I have enough stimuli in a day. That’s my theory about VM that no doctors really seem to understand except for a few specialists - that this type of chronic condition is triggered by a vestibular neuritis of the inner ear and other nerves are involved in the viral attack, so they get damaged too. I was also probably vitamin b12 deficient and d deficient at the time and that could have weakened my immune system’s ability to combat the virus that did this - some viruses reactivate in nerves (the chicken pox virus for instance, Ramsay Hunt virus is when the virus comes out to the surface of the skin through the nerves on the face). Shingles is when that virus reactivates along another nerve line - usually coming out to the skin on the torso.

I say all this as encouragement though because there ARE medicines that are highly useful to get these types of nerves back under control and calm everything down so you can life a functioning life again. The main thing I’ll put out front is that everyone is different too, so that you may need to use a different drug or at a different level than I have used to get about 80% better - but the most important step is to see a neurologist (not an ENT or another doctor who can’t help) who can prescribe drugs to help you. You need to find out which drug has the least amount of side effects you can tolerate that helps the most in your case.

In MY case, I’ll review the drugs below that I’ve used and how I responded to them (there are others too - such as zoloft):

  1. Topamax - an anti epileptic - calms down nerve firing - I have a sulfa allergy so I couldn’t use it without ocular sx, but others on this forum have found great success on it at 50mg and higher (titrating slowly, starting with 25mg at night for a week at least usually a few weeks) - but it takes a longer time to work than other meds, does not cause weight gain or bloating, which is nice. It helped my balance quite a bit at 25 mg but I stopped taking it when I got eye tracers and weird sx (usually doesn’t happen).

  2. Nortriptyline - an anti depressant, shifts the way your body responds to nerve signaling/pain signals by elevating serotonin in the brain - few side effects except for more rapid heart beat in my case and some constipation - supposedly you get used to the drug and these sx go away sometimes, helped enormously after 1 week (the first week I felt even weirder!) in helping me be less light sensitive, prevents my migraines from starting, also helped with balance and feeling less dizzy (and I was only using 10mg, the lowest dose and saw those great results). Stopped taking it when I panicked about the heart beat, but I might go back on it. Does sometimes cause weight gain. You have to be careful and not eat too much. Take it 12-14 hrs before you want to wake up so you aren’t too groggy in the morning. Can cause vivid dreams, at least in my case, but I sleep v. well on it.

  3. Gabapentin - an anti-epileptic, not always prescribed often by neurologists for VM, but I actually found that at 100mg-200mg 3x a day, 7-8 hrs apart (you have to dose more often with this one because of shorter half life) was the best one to give me back my sense of stillness. It was sedating though even at this dose and I often felt tired but could drink coffee and was even okay doing that (usually caffeine would trigger VM for me) - but not as good as nort. for light sensitivity.

These are the drugs I’ve tried since the fall. I am now debating whether to do a combo of nort. and gaba or just do one of them. Everything has some side effects. As for birth defects, apparently nort. is the safest for pregnancy and breast feeding (I don’t know if you’re around my age, which is 30, but this is something always in the back of my mind) but gabapentin is probably also okay as long as it’s not used in the first trimester (that’s to be to the safe side). I guess I’ll consult with my gyno and neurologist again before having kids though, obviously.

Other people can chime in to tell you about their experiences too. But it does sound like most cases of VM start with a traumatic period or stressful life event, or just a period of ill health when you felt like you had a viral attack or vestibular neuritis etc. Drugs can really help bring back a sense of normalcy though - I went to a concert last night for the first time in months just being on gabapentin and I’ve been horseback riding again on both nort. and gabapentin at different times. Those were things I could never dream of doing a few months ago before I started trying meds after seeing neurologists. I am also fine driving now… Be strong, you will get better or at least find a way of living a more normal life again. I lived at home for a few months last year before I started the medications, while looking for work, but I’m now working full time again and I’m doing much better.

Liv xx

1 Like
3

P.S. I would just find a neurologist who knows about VM/MAV and not talk about Ramsay Hunt or a viral attack though because although I think I’m right about this (and being young maybe I didn’t get the classic rash for Ramsay Hunt) - doctors never liked it when I told them my theories and usually it backfired. Just get a migraine doctor to prescribe you medicines for VM that they prescribe for atypical migraines, and see what works for you. I’ve had to go through several doctors to find one that has a decent bedside manners. Just find the right dr. for you who is understanding (most doctors always just said I had anxiety because I look fine, but that was not right). You may also find this article interesting: http://www.xojane.com/issues/migraine-associated-vertigo

4

Hi Michelle,

I’m sure you are having vestibular migraines. I’m also sure that your neck is a huge trigger for your migraines. You see, my story is similar to yours, it all started with some neck pain after a physical therapist worked on my neck, I started getting dizziness here and there, overstretched my neck one day, and the next day at work I looked down at a binder under the fluorescent lights and have been dizzy ever since. You are smart- you took NUCCA upon yourself early on. I explained to my Neuro, GP that this all started with my neck, but no one listened to me. Only after 14 months of this starting I saw an acupuncturist for my neck and lots of improvement after all that time. She said my c1 was out, and boy, was it out - I touch it and it’s like a ball on my left side under my ear. That showed me for a fact that it’s from my neck. My story is very long, to make it short, I injured my neck while trying to help myself again and all went downhill. I went to an upper cervical chiro about month ago three times but didn’t improve at all.

I have horrendous muscle spasms on my upper back and neck and i believe that it’s the spasms that is causing my dizziness directly and by triggering my migraines indirectly.
Stick with the NUCCA. A bit of Amitriptyline if NUCCA can’t get you out of the migraine cycle (10 mg) isn’t bad either.

You are on the right track. Keep doing it and see if you can get very gentle neck/upperback massages as well. I say very gentle as I learned it the hard way - it gets worse if you are already spasming with anyone touching your neck. Do breathing exercises, too.

You’ll be fine :).

Best,
Asli

5

Hi Liv,

Thank you so much for sharing your experience. It’s such a strange disorder that I wish the medical field had more help for, but I am grateful that the specialists seem to be getting some people better.

I also forgot to mention that my vertigo started the morning after a very stressful situation with an ex boyfriend that I was basically afraid of hurting me. I got a bad phone call the night before and then the vertigo happened the next morning. It does seem like stress triggers it. That is an interesting theory. I actually was seeing a chiropractor before seeing the NUCCA who thought it might be a virus which doctors laugh at. He gave me a supplement called Monolaurin which is thought to be an antiviral but not much research done on it.

Thanks for the info on the meds. I’m new to all of this so it is very helpful. If I decided to start on the meds I will definitely consult with the neurologist with all the different choices. I do remember him stating that he would try the amitriptyline on me first. He may have also mentioned another one to do a combo with but he told me to do all the lifestyle changes first as well as continuing with the NUCCA.

I’m so glad that you are getting your life back and went to a concert! That is so good to read :smile:

I really liked my neurologist. He was the first doctor besides the NUCCA that agreed with me on everything including how I felt that I was misdiagnosed with the BPPV as well as having my neck be related. He even said " why didn’t they order an MRI of your neck??" Good question! Nobody thought it was related which is just ridiculous to me seeing as how whenever someone put any kind of pressure on it, I would start vibrating!

That article was very nice to read. I really like the success story thread too! It keeps me positive. Thank you, Liv!

6

Hi Asli,

It does make sense that my neck would be triggering the migraines since I do have them! I am actually feeling a weird sensation on the left side of my head as I type this. It’s almost like a headache but leaves and comes back every 10 mins or so. Vertigo seems better when I have this sensation which is odd.

Oh wow that is similar to how it happened to me. I actually believe that I had whiplash from two fender benders I had two years ago, and then not knowing about the misplacement of the C1, I just went on with life while getting my neck cracked by normal chiros which I won’t do ever again, and then with having my head down the weight of my head just did something. That’s what it seemed like to me, anyways.

I am glad that I started NUCCA as well. And so grateful that it’s 3 mins away from me. I actually didn’t see any improvement with the vertigo for two weeks going twice a week. The end of the second week I started noticing something, and for the past two weeks I’ve definitely noticed a difference with the vertigo. It can even get agitated in the beginning as well, so I would keep doing it if you can! The adjustments can take some time to “hold” from what I learned. And it also takes the nerves time to recover, so if you don’t wait until the adjustments start to hold for multiple days, there isn’t enough time for the nerves to heal. From what I am told. :wink: The NUCCA I go to has 170 reviews all ranging from 4-5 stars on how he has cured migraines, back pain, and vertigo. I am glad you found some help with acupuncture though. Have you heard of electrotherapy for the muscle spasms? I heard that is pretty good.

Thank you, Asil! I will keep everyone posted on what is working and not working for me. Wouldn’t it be great if I could get this figured out with some NUCCA and lifestyle changes?? I hope so!!

7

Hi Michelle!

I actually met up with Brittany who wrote the article I sent – she is doing well, working in NYC, and trying to taper off her meds (the zoloft/sertaline and nort. combo). She wanted to write a follow up article if she’s successful with that. So yes she’s a success story and was lucky to find a combo of drugs she could tolerate! It took her a while, as you can see from the article… as it does for most of us on here, I think.

I am not sure if she’ll be able to get off them without having the dizziness symptoms come back, but I really hope she’ll be fine - sounds like others on here have been able to titrate up on the nort. and then go back down, and experience some type of remission. Others continue to medicate with the lowest dosage possible of whatever (seems like topamax is highly successful if you have the perseverance to stay on it for a few months, and also are OK with the sx - I have a sulfa intolerance so that limited my ability to tolerate it, I think).

For me, gabapentin mellows me out a lot, which I do need with this condition (as you know!) because it creates so much anxiety. I used to be a highly functioning person, but now I do still even with the medication have to do things a bit slower - but the MAV has also made me much more empathetic towards people, less concerned with trivial stuff, healthier overall in terms of diet and exercise, and focused on priorities in life. So I think this illness can bring out that and that’s a positive - I’ve always though that after three yrs. if I could just get better, I’d be the happiest person alive :slight_smile: On the other hand, I’ve also come to recognize this could be chronic and I just need to get as well as possible to function in my job and with friends and partners etc.

I have the wobbly sensation (kind of like a boat situation) if I’m not on the meds, so I recommend you try them at the lowest dose you can to see if you’re sensitive to meds and respond well to low doses of stuff over a week. Sometimes neurologists pus people to go up to high too fast, and you might be better effected by a lower dose (gabapentin for instance actually has dizziness as a sx if you can’t tolerate a higher dose - I’ve never been able to go above 300mg 3 x a day without getting that other type of dizziness). Anyway, everyone is different…

Keep your head up and the main thing is to try to be kind to yourself - get sleep, but also try to enjoy stuff. I confess I do have the odd glass of wine or beer even taking gabapentin, which I think is OK if you have like 1 glass but not more since it magnifies the effects. Things will get better… Take vitamins (I take D, B12, and usually C, as well as a multi whenever I remember). Diet doesn’t go to far in terms of controlling MAV, I’ve found, except avoiding MSG in its hidden forms… you can google that. It’s weird how it’s hidden in stuff. Caffeine sometimes makes MAV worse… as does too much alcohol.

It’s interesting that this happened to you after a stressful situation. In my case, I was also finishing an advanced degree at the time (a PhD) and was under a ton of pressure in that realm. I think I exercised too hard at the gym the night before it started happening too, and I remember I had to rush to interview someone last minute on the phone, and that might have triggered it as the last straw on my body. I’ve done a ton of reading about the varicella zoster virus (chickenpox virus - nicknamed VZV in the literature) and it can come out in times of low immunity combined with stress. I was a vegan for a few years before this hit me…I don’t know if that contributed. I read this article and that’s what got me off on this theory: Neurological Disease Produced by Varicella Zoster Virus Reactivation Without Rash - PMC

But I think it’s rare for the VZV to come out twice. Kind of like how shingles only happens once to people… I think younger people CAN have the chickenpox virus affect their cranial nerves without the rash showing, as there is literature about this, but I have no proof (Ie I didn’t have the class Ramsay Hunt rash), so by telling doctors my theory, I just ended up making them feel threatened like I was trying to be smarter than them. Getting obsessed with the cause of it as well can be self-defeating…

It’s just that doctors don’t have an explanation for why our nerves would be doing this weird stuff suddenly after an episode of vertigo, noise and light sensitivity - and those are all symptoms of vestibular neuritis (which is a viral attack on the inner ear) - and I think it’s Ramsay Hunt without the rash, essentially. Anyone who has had chickenpox, has the varicella zoster virus (a herpes type of virus) in their body lying dormant until it is reactivated occasionally under extreme stress - or immune suppression. A poor diet low in b12 and D I think contributes to immune weakness. Perhaps some people are more genetically prone to VZV reactivation.

So, that is why I think people respond well to nortriptyline which is prescribed for post-herpetic neuralgia (shingles pain - after someone has an attack) - as well as gabapentin in my case - again also usually prescribed for nerve pain as well as being a ‘migraine’ medication. I think that this name “vestibular migraine” and “migraine associated vertigo” - a chronic condition - is in fact nerve damage done by the VZV virus.

I have tried lauricidin and it is not particularly useful in terms of helping dizziness, for me anyway, because the virus is not still active - that is a good supplement for someone who has another type of herpes virus that comes out more often, for instance, such as genital herpes or oral herpes. VZV is in the herpes family but does not come out as often or manifest itself every time as a rash - there are instances where it doesn’t need to come out as a rash.

In my opinion, VM is the result of a post-viral attack nerve pain/damage/inflammation that has to be addressed with certain meds, that either slow down nerve signaling (the anti-epileptics) and/or the drugs that change your brain chemistry (the anti-depressant class of drugs) so your nerves can’t send the same type of messages and you aren’t going to get as dizzy and have as much nerve pain from the overfilling nerves.

Sorry for the long message. I am not a neurologist, so take all of this with a grain of salt. I’ve done a lot of reading though… and it seems to add up for me.

But if other people think that it’s a neck alignment issue, or that they have other causes, that’s fine too - all that really matters is getting the right medication to help you live life again! Interestingly, and this relates to what fussy fussy said, I have tons of neck tension that accompanies the MAV because I think it’s that my muscles are straining when I get dizzy to keep me balanced. But that neck tension does go away with meds that help you loosen up in terms of being less dizzy… thank goodness we live in a modern age with medicine though (I just wish fluorescent lights hadn’t been invented) :slight_smile:

The main thing is to get your immunity up, lower stress, and that’s why I like gabapentin because I do feel calm on it - so that helps with the MAV overall in addition to calming down my nerve firing.

Keep me posted if you get on a medication that really helps you!! I’m still kind of finding my way with the meds… Gabapentin doesn’t work perfectly in all situations, but it’s my go-to drug right now. Nortriptyline also seems highly useful but I have more sx with it in my personal case. Gabapentin doesn’t help as much with light sensitivity but it helps in other ways. It’s the first drug to give me a sense of real stillness back even at 100-200 mg dosed at three times a day. Apparently thats a really tiny dose, so I’m happy about that!

xx

8

That’s an interesting theory and I wonder if they are researching why this happens? I got the chickenpox vaccine as a child so I never actually got them. Not sure if that makes a difference.

The only reason I think my neck is a main cause is because I was having major issues with its mobility before the vertigo, and then when I had vertigo and it would sort of go away a bit, the moment a Chiro or Pt would touch my neck, the wobbles would come back instantly. I guess we all become a bit intuitive about the triggers after some time. It would also make sense if there was a virus running riot though.

I’m really glad that you have found something that works. Will definitely keep you all updated! :slight_smile:

9

Interesting about the chickenpox vaccine. That means that you did have exposure to the virus though, since your body got the virus in a small form but then fought it off (that’s the idea behind a vaccine). The virus goes latent/dormant in your nerves after your immune system suppresses it. So I guess a vaccine might not hypothetically protect someone against shingles /Ramsay Hunt but again I have no idea…I’m not a dr. And there are no studies of this since the first generations of the chickenpox virus aren’t old enough to get shingles yet frequently… and if this VM is actually form of shingles in the cranial nerves (without the rash manifesting) there’s no proof because there’s no rash. It’s a catch-22 for researchers…and for us! Oh well. The main thing is to move on with your life (I obsess over the causation of things as a researcher since that’s my field of work!) and get the meds that help you the most. Do keep us updated!

I’ve been in touch (as well as seen in person) one of the neurologists who wrote that study about VZV reactivation without the rash in the cranial nerves, so I did mention to her that I think that VM needs to be researched more along these lines… hopefully that will encourage more doctors to do that…she’s a specialist in these viruses but vestibular migraine docs seem not to consider the possible links between the two. But again it’s all a theory and I could be completely wrong. Dunno. All I know is that these meds that help with post-herpetic neuraglia help VM patients as well as shingles patients, which is a fascinating connection. xx

10

I never liked how people describe vertigo. To me, its always hard to tell what exactly I am feeling, though I have not been diagnosed and I am currently waiting to try and see a Neurologist. (I am going to my heart doctor tuesday to explain the situation and hopefully get a referal to get some relief.) I have arrhythmia’s but pretty certain they are unrelated.

But I never really get the spinning sensation that people talk about with vertigo. Sometimes for me its like I will move my head a particular way and ill get a wave that rushes over me that kinda disorients me for a second. When I am walking sometimes it feels like there is a rope thats holding me by the head and im not really walking on steady ground. It just doesnt always feel the same, and never just easy to categorize like the world pool. I think I would be a lot less afraid if that was the case. Hell I do get ringing in the ears randomly not for generally long peroids but had them since i was a kid and thought it was normal (would last a few minutes) Now though when things are quite and for me they are typically never quite I like to listen to something when I fall asleep I can hear a very low ringing even now as I am typing, I dunno if its been there or not lol.

I think this thing is worse for those of us who suffer from panic attack and have a disorder (me) because sometimes I think ill have an attack like I did a few minutes ago in the car were I am feeling kinda throw upy but also very disoriented and maybe light headed. but I can’t tell how much of that is my anxiety and how much is migraine related possibly.

11

Hi Michelle,

Thank you for sharing your NUCCA experience. Let me ask you some questions about it since you actually had some positive experience with it:

  1. It’s interesting that you went 4 times before any improvement. I stopped after the 3rd time. In my case, though, I got ringing in the ears in both ears that’s not going away after the second treatment, so I was annoyed that I got more damage than any help from it :(. Did you have any side effects?

  2. Did you feel worse before you felt better?

  3. Can you touch your c1 and feel the misalignment? Mine is quite obvious.

  4. Mine is an Atlas Orthogonal chiro, not NUCCA, so he uses an instrument. Did he say he had high success rate with dizziness? Mine said from the beginning dizziness is tough to treat.

  5. How many treatments did he say he thinks it would take to help you? Did he say how long it would take for the nerves to heal for you to feel better?

  6. How many “degrees” was your misalignment? Was it tilted, rotated? Mine was 4 degrees rotated to the left and up on the left side.

  7. Did he say no massages etc to the neck? Anything to avoid during the treatment?

  8. What state is he in?

I’m sorry this is a lot to answer but you are the only other person I know who’s going through the atlas route. I hope you don’t mind giving answers in the number format so I can follow. Thanks so much :wink:

12

I can obsess about the cause of things as well. Especially because most MDs don’t try to find the cause and instead just treat the symptoms, so it drives me crazy!

It is an interesting connection though.

13

Yeah and the great thing if it is viral is that there is a solution - which I have experienced: post-herpetic neuralgia medications (nort., gabapentin, topamax too - although that’s not as easily tolerated in my experience). The best thing to do when going to these docs that don’t find the cause and treat the symptoms is to just ask for meds for “migraine” though - I have tried out my theories on normal neurologists (not specialists in viral causes for these symptoms) and they don’t get it - but specialists on these viruses to think that it’s possible. The main thing is to lower stress, be encouraged that there are meds to help get your life back (gabapentin is my wonder drug - at a low enough dose so it doesn’t make me woozy!) and to get your immunity up with a proper diet rich in b12, vitamin d, vitamin c etc. Start low on any medication and see if the lowest dose helps first, and then go up to the dose needed for relief… that’s been some of the best advice on his forum! Thanks to all. Liv

14

@sturek It is really hard to tell sometimes. I told one doctor I felt disoriented and he kept saying “oh so you weren’t conscious?” and I was like" No, I was I just felt really weird!" Everyone associates different feelings with different things.

I haven’t experienced the spinning vertigo either except that one time last year. Mine is just a constant state of motion.

@liv85 Thanks for the advice, Liv!

15

I’d be happy to answer what I can!

  1. I actually felt a bit discouraged during my first couple of visits because I was just getting worse it felt. After my first visit, I got a really horrible neck ache the next day along with some weird headaches and my vertigo got worse. After I woke up the next day it all seemed to be better. There were definitely times where I felt worse and I did get a bit of ringing in my ears randomly but it usually goes away after a few seconds.

  2. Yes. All of my symptoms were aggravated during the first couple of visits. It can take a while for the adjustment to hold, and from what I was told every time I would get adjusted, he was basically aggravating an aggravated nerve. The more time the nerve has released, the more it will heal.

  3. I actually haven’t tried touching my neck at all. I feel like it’s really sensitive right now and I don’t want to make things worse. However, I can feel it when I turn my neck certain ways. Almost feels like something is poking my skin.

  4. He did! I learned about the Atlas Orthogonal as well and I feel like the NUCCA method would be more useful in a correction like ours. My NUCCA first began working on the left side of my neck, and now works on the right side. I have no clue what he is doing exactly but it seems to be working. He also told me to let him know if I don’t see improvement because he can do different things.

  5. He never gave me a time. He said everyone is different, and that we will know if there is progress within a month, and if there is we will continue, and if not he will try something different and give it another couple of weeks, It’s important to also give your body time to heal itself. He explains that he just aids the body in fixing the misalignment. As for the nerves, it depends on how well your’re holding the adjustment. I don’t believe there is a time frame. Sometimes it is instant for people. I guess it depends how long our necks have been like this.

  6. Mine was tilted out of place 3 degrees on the left as well. I also had one leg 1 inch shorter than the other which is a sign of brain stem pressure according to NUCCA. Because of that misalignment, everything on the right side (my neck , back, and arm which I was having issues with before the vertigo) was compensating for the misalignment and giving me problems. The issues I was having with my neck and back before the vertigo has subsided by like 90%.

  7. He suggested not to do anything else since it would be hard to tell what is working and what isn’t. He basically told me to avoid having anyone touch my neck, and posture is really important. Uncrossing legs while sitting, and when you pick something up, basically do a chin tuck to lock the neck muscles in to avoid anything moving. Making sure your shoulders are straight and no slouching. I would also suggest getting a pillow that has cervical support ( I have a keetsa pillow) so you aren’t ruining the adjustment when you sleep. And absolutely no stomach sleeping.

  8. He is in California where I reside. This is the website with his 170 reviews. Take a look!
    https://local.intuit.com/b/painfreelife

Also, one major thing I have noticed since going is that when I wake up in the morning, I am vertigo free for 20-30 mins. I actually just woke up an hour or so ago and have been vertigo free for about 30 mins. I can now feel it creeping in :confused: . I asked the NUCCA why this is, and he said the weight of my head causes he misalignment to activate basically which makes sense as to why I feel normal after having my head down for a while.

Feel free to ask me anything! I have seen positive improvement but still not cured. I am going to give it plenty of time though as I only live a few mins away and it is very affordable for me.

16

Always happy to help however I can… I know how much this stuff sucks. My sensation is the same… Not spinning but more like im always moving inside my head… Like on a boat. Gabapentin has given me back more of a sense of stillness. Nortriptyline was helpful too but not like gabapentin to calm down the nerve over firing, including the ear symptoms. Doctors are not experiencing these symptoms themselves so it’s really hard for them to understand. Unless you have MAV, you don’t really know what it feels like. I certainly couldn’t have imagined it until I got it. Hope you guys feel better soon! xx

17

P.S. I think we all get dizzier as the day goes on simply because the nerves encounter more external stimuli that aggravates them - the ocular nerves then cause a domino effect in aggravating the vestibular nerve etc etc They are all connected in the brainstem. It’s not an issue of alignment, I’m pretty sure in my case. The neck pain and tension is caused by my body tensing up because of the odd sensations and trying to compensate. All these meds have helped that tension decrease in tandem with decreasing my vestibular problems. Gabapentin is the best so far. I recommend it. Start really low and see if that tiny dose does the trick. The problem is that people go too fast on it I think and get dizzy on it. The lowest dose (100-200mg 3x a day) cuts the MAV nonsense for me.

18

Thanks, Michelle. That’s really kind of you to take the time to answer so clearly.

I’m all the way in NJ, I wish I could see your chiro. He sounds like he knows what he’s doing. I hope you heal perfectly very soon.
Asli

19

@liv85 I will keep that in mind! Thanks so much!

@Fussyfussy thanks! The same for you as well!

20

Thank you, Michelle! The weather affects me too… the storms are coming in now to the south where I live and I am having more head pressure, but I’m trying to let go of the anxiety about it. Gabapentin helps a lot. Take care both of you and keep me posted if a medicine or something else helps you guys! I do think sometimes the weeks I am not drinking caffeine (and MSG… in “natural flavors” in a ton of prepared stuff) I am better off… It makes me more anxious more than anything and adds to my head pressure. xx