I'm new here and am suffering. Looking for help

Specific Illnesses & Conditions VM/MAV
1

Hello,

I don’t even really know what I have but I’ve been suffering with a lot of what other user’s have here.
The day my life changed was last August. One day I just became all disoriented under any sort of light, especially fluorescent light’s, sun, computer’s, cell phone’s, t.v’s. I feel as if the life is being sucked from me 24-7 but under the lights and in the sun or around EMF’s, I’m 20 time’s worse. I can barely work anymore. I can barely take care of my son. I actually want to die. It’s that bad. It really doesn’t sound bad but it really is. I always have ringing in my ears, patterns make my vision horrible. I feel as if my head is 24-7 vibrating. My vision is perfect but I can barely focus. I feel like im crossed eyed but im not. I have paid for so many expensive doctor’s, a lot of them quit on me. I’m paying for an expensive lyme test, ive doen everything. Changed my diet, tried many supplements. you name it. All my tests are normal. I have 2 ENT’s, 1 Neuro, 1Naturopath, and 1 new lyme Dcotor. Not one person has been able to help me. I’m 30 years old. I do not like medication and my ENT suggested I may have migranes. I DO NOT have any pain, yes I am luicky I guess but I literally suffer 24-7. At least if I had pain a pain pill could help. I never get a break and I feel like my brain has been fried from being on the electric chair, always.
Sorry to get off track. My ENT prescribed me Amitrypline and I was very reluctant to try but I did. I immidiatley felt %30 better the next day. I was ecstatic. I could live that way. One day I even felt %100. I didn’t even realize because I forgot what it felt like to feel normal. Anyways, that was short lived. I suffered a fractured nose 7 days later and at the hospital, all the light sensitivity abd vision crap came back. It has been over 6 week’s sicne that and the Amitrpline will not work at all anymore. I am devastated.

I was just prescribed Topomax and I took my first dose last night (25mg). Did not do a thing. Maybe made me worse. I was crying out of nowhere, more than usual. LOL and I had the dry throat that I read was a bad sign. I read so many horror stories about that drug but I am so desperate. I have nowhere else to turn. If a medication works on me, it usually works asap, like the Amytypline did. Should I scrap the Topomax? Can anyone help me out with any advice?

I feel like this is the end of my raod and nobody has a clue what to do for me.

any help would be sooooo much appreciated. It took so much for me just to type this. That’s how bad I am.

2

Hey Brianna, I’ve been there with exactly what you describe including the head vibrating. 400 mg twice a day of magnesium glycinate plus 200mg coq10 and 400mg b2 helps me so much I can watch tv again without discomfort and use my phone no problem. I can work on my laptop, ride horses and do exercise again. Even go to restaurants. I still don’t like CFL lights but that’s about it. See the recent posts by people. You’re lucky you’ve found this site a year in and have a son already…I’m 30 now too and I suffered for three years before I figured out it was MAV and doctors thought I was just in need of a psychiatrist. And your son is a blessing. I am just relying on my faith that I can be strong enough to have kids. My boyfriend and I both want them but I don’t like the idea doing meds while pregnant so hoping the supps will be sufficient. There was also a point where I felt extremely depressed… I’m doing 90% now so try these supplements. If these don’t work I think Effexor and Zoloft have helped others in addition to topamax and ami .i got more depressed on some meds so I’m trying the supps alone. Low dose gabapentin was my best drug out of all of them FYI xx

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)

More recommended supplements here.

3

Liv85,

Oh thank goodness someone has offered me some advice! I’m still unsure this is what I have, only because I’ve been on so many other chat rooms and seen so many other doctors. I was actually focused on Lyme at first, then I found a sight that focused on breast implant illness ( I and them put in due to a chest wall deformity after having my son) so I took them out. Waste of money. Having the surgery made all if my symptoms worse and when my nose was fractured. I don’t know if this correlates but it sucks. It doesn’t ease up either. I’m scared to hurt myself or go into major surgery because I can’t get any worse than this. I woke up this morning and read this and I’m faithful to try these sups.

Is b2 vitamin b2? How long were you suffering for before you figured it was this? And I’m so happy these sups are working for you. Children are definitely a blessing but I am no way in any form have been a good mother to my son in the past 10 months and I cry almost everyday. He can’t even live with me full time because I couldn’t give him what he needs. I used to do everything with my son. Take him to Chuckee Cheese like 3 times a week, play outside endlessly. Now I defiantly cannot go to any of those child places. I go outside with him and I act like I’m having fun but the whole thing is like being In a haze. My son knows everything that’s going on with me and he literally asks me every time he’s with me if my dizzy is better. He has come to so many doctors appointments with me. He’s better than any man ever in my life. Even better than my own father. Nobody really cares because nobody sees I’m sick. I’m sure we all look fine, that’s why it’s hard to get support. If you decide to have children and your feeling %90, that’s probably a good sign. Medication doesn’t really do much for me anyway. You have a hubby to support you too which is a world of difference. I know what you mean though. This illness or w.e it is, literally holds you back from doing any normal thing that most ppl take for granted.

I will shop for these products today and hope for the best. Thanks again for reaching out to me. :kissing_heart:

4

Hi Brianna, I completely empathize! OMG. I’ve had this three years and I look fine on the outside so no one understands how it could be that I was so ill. My family didn’t believe it either. My sister gets migraines and dizziness but not as severe as I got it, and I was so worried my whole life was ruined. I stuck with my job (thankfully it’s an academic teaching job so I could take time off when I needed to) and actually found that MAV taught me some important things about life priorities and needing to take better care of myself…so I am grateful for those things about it. I’ve had it for three years so I think your body will recover slowly on its own from the initial shock of having the migraine brain start. I had head vibrations too and felt like my head was really pressurized all the time. I also felt like everything was moving all the time and couldn’t use any screens at all w/out severe issues. Restaurants were particularly bad for me with all the lights, same with movie theaters. But now things are so much better. I tried different drugs after seeing a neurologist (some of them are more knowledgable about ‘atypical migraine’ than others and more empathetic) - nortriptyline at 10mg helped me but bloated me so I stopped it, it took about a week to kick in and sometimes medicines make you dizzier before they make you better. Gabapentin at 100mg-200mg 3x a day was by far the best for calming my brain down but it also sedated me and made me kind of feel not like myself. It’s great for calming anxiety too though. It made me woozy at higher doses but some people can tolerate it just fine at very high doses by titrating up. Topamax and I didn’t get along b/c I’m allergic to sulfa meds - but it has helped others on here (the trick with that one is to start low and go slow in titrating and realizing it might take months to work). I want to have kids so I’m very determined to stick to just supplements since I actually feel much better using them than any drugs. However, I do kind of miss the anti-anxiety aspect of Gabapentin! haha Magnesium is super - but the type you take is important. I have found that KAL Magnesium or Drs Best Magnesium are the most absorbable and also don’t give GI issues at higher doses like some other types of magnesium. So this is what is working for me so far:

400mg Magnesium glycinate (KAL brand) 2 x a day (400mg in the morning when I wake up and another 400mg in the evening)

2 chewable calcium supplements with Vitamin D a bit later in the morning after I take the magnesium (Nature Made type from CVS)

200mg of Vitamin B-2 (riboflavin) (I have been using the NOW brand of it, very cheap)

400mg of CoQ10 (ubiquinol sometimes called “Kaneka” type of it) in the morning - I found a cheaper version of this type of it at Trader Joe’s but I think there are some cheaper version elsewhere too, it’s probably my most expensive supplement so I’m always searching for cheaper types of the ubinquinol type which is suppose to be the most absorbable

I also have to steer clear of too much tyramine in foods and MSG - it is often hidden in “natural flavors” in prepared foods in the ingredients. So it’s good at least MAV teaches us to eat more whole foods, I guess. I can’t overdose on yogurt, nuts, peanuts, very ripe fruits, red wine, or anything else high in tyramine without feeling worse the next day. Oddly enough strawberries and berries seem to give me issues. But overall with these supplements I eat what I want and am OK. My sister says her MAV symptoms are worsened by gluten but I can’t see the big correlation. Dairy might be something I try cutting out to see if it helps or not. I know that keeping calcium intake under a certain limit in the day (by not overeating calcium) and eating magnesium at this dose seems to help a TON. CoQ10 at 400mg also seems key to my recovery but I’m not positive about the B-2. I take it as an insurance since I started taking all this stuff together in late March of this past year when I started getting much much better and I wasn’t sure which thing was helping the most. Some studies say you need 400mg of Vitamin B-2 to make a big difference over a few months but I seem to be okay at a lower dose of that as long as I keep the CoQ10 and Magnesium glycinate high enough daily. I think all this is safe during pregnancy btw, since we have this stuff naturally in our bodies and B-2 is water soluble - if you want to have another kid, but I’d check with an OB-GYN. I’m just so relieved to be functional now and I’ll probably never be exactly back to normal but it’s good enough and I’ll take it:)

I hope you start feeling better soon and that you and your son can have fun together! :slight_smile: Have a great weekend and I’m happy to answer more questions. Liv xx

P.S. The KAL brand of magnesium glycinate as well as the Doctor’s Best type of it can be found at Whole Foods (at least the one I went to in TX) - and Whole Foods sells a good brand of CoQ10 but Trader Joe’s type of it is cheaper and seems the same.

P.P.S. The GAIA brand of St Johns Wort is also helpful but interacts with several types of meds - mostly the antidepressant class of meds - so I only take it because I am only on supplements. I don’t take it regularly though because it seems to make me more jittery although it does seem to help decrease the MAV symptoms further.

5

Liv,

Hey there, hope all is well.

It’s so hard for me to get on to a computer the past 2 days cuz my symtpms are just always bad or wrose. Im sure you can understand. I do the low_histamine, paleo diet for months now. I like to stick to it buit I do cheat. No change in my symptoms from there.

I bought all the supplements you had mentioned you take. I actually take Natural Calm with calcium for years now. I’m not sure if you’ve heard of it but you probably have. I still bought the additional Mag tablets because I figured hey, why not. So I started all supps last night. Thank you for the advice and these supps are safe to take if your expecting. SO that’s a super plus for you. Yoir so very lucky you reached %90 with these alone. I’m probably going to get off the Amitrypline. I noticed it causes less pressure in my eyes and head but not much. I’m only on 12mg a night and really, it makes me feel like a zombie the next day. im super zombie right now at work. I stopped the Topomax after 2 day’s. It didn’t work anyway and I read so many stories on here that scared me. I did see some good however.

I really am just wondering if this is a “waste basket” diagnoses though. I don’t know how what we have, especially 24-7 for me can just be migranes. It seems more like an infection to me. I have a Lyme specialist who thinks I have Lyme or Cat scratch fever (bartonella) because I have outdoor cats that I’m super close to. I don’t know. it just seems so weird that they never go away and it gets worse with an injury. And stays worse, does not ease up. Do you ever feel this way? I don’t want to stick onto a diagnoses that has basically no cure, just managing. Don’t get me wrong, I could live with being %30 better for the rest of my life but sometimes I wonder.

Your advice was much appreciated and I did some research on it. So I’m hoping for the best!

Have a great day and enjoy every moment your well

6

I know what you mean. My theory is the migraine is secondary to some other issue or issues in the vestibular system. I mean why get vestibular migraines? When you have the migraines controlled with meds, the remaining symptoms are the core ones mixed with the brains processing of them. I believe in my case i have an instability with my inner ear and this provokes the ‘headache’. I’ve been told inner ear trauma can take a couple of years to heal. I wouldnt be surprised if a long healing process like this explains why some get much better but can take them a couple of years or more. It could explain why some are eventually able to come off meds.

7

Hey Brianna,

I shared the same symptoms as you in 2014, and I tried Amitriptyline and it worked after a month or two, which brought me back to normal. Then, a couple of weeks ago I got a sinus infection, and all the symptoms came back.

There is some conflict of opinion at the moment that suggests:

  1. You will improve on the same med and dose after a few weeks (which you’ve already done, and no result)
  2. You will improve on the same med if you increase the dosage
  3. You will have to go on a new med
  4. You will have to mix meds

It seems that all 4 have worked for different people, so there doesn’t seem to be a standard, which is very frustrating. I upped my Ami from 50mg to 150mg and there has been some improvement, but nothing massive just yet. I’m at a cross roads of slugging it out for a month, or seeking my neurologist. Best of luck, this beast is a hard one to tame. It felt good to be normal for 2 years, and I hope to get that back!

8

I also forgot to ask, how many milligrams are you on Ami?

9

John,

My goodness, I know how that feels. I only had about over a week of relief and it was only %30 which was still great. Your lucky you got two years.

It also scares me that such a little thing can flare up symptoms again. Like, we have to be as careful as hemophiliacs. I’m not kidding. I have no idea why it happens. But it’s terrifying. The same thing happened with me where the ami worked but then after the accident, it has no affect. I tried upping my dosage from 15mg to 25 my I literally feel worse. Just more in the sense that I’m so drowsy and on edge. It’s Impossible. I’m scared of topomax so I. Leaving that in my med cabinet. I got Vermapil of she it’s called but when I stopped taking the ami the other day, my head felt much clearer, no drowsiness and I felt more like myself. I just don’t want to be on a long term medication because I know that they are just cover ups and the problem is still there. I’ve tried two months of acupuncture from th best in Canada but improvement. Have you tried any alternatives? And how does the ami make you feel at 150 mg?

I will take a medication and suffer the side affects, only if it works. I’ve been on ami since May and I’m about to give up on it, go natural for a few weeks then try the Vermapil. My GP is doubting my diagnoses from my second ENT only because I have this 24-7. I need a break. Just one day a week would be nice.

How long since your sinus infection have you been on the medication? It also makes me worry that the medication eventually wear off. I’m 30 and I will need this everyday. It will surely wear off before I’m an old woman.

I hope you find some relief. And let me know what works for you

Thanks for your reply

10

T,

Yes, to me it just doesn’t make sense. I have this 24-7, no pain. I have migraines in the past if I drink alcohol but that is my only trigger. Now if I drink, my symptoms are 100 times worse.

I would only hope this would go away but I’ve had this about a year now and it only has gotten worse with surgery and my nose fracture. Never gets better. Maybe had a handful of days where I was at %30 but that is not enough.

I believe I have an infection that tests cannot pick up. I’m waiting for my lyme results and my barntnoella results. I’m wasting so much money on specialists and therapies and getting nowhere.

I hope in your case, it does ease up. How long have you had these symtpms?

11

9 months following an acute vestibular event 5 months prior to that. Amitriptyline has saved my sanity, even just at 20mg. I feel for you. In the 5 months when I was not on meds things went from bad to dreadful and downright freaky, like the way the floor would seem to rock in supermarkets.

Must say your nose injury must be having an impact. Give it time to settle. Poor you!!

Dr. Hain has an excellent summary of drugs for vestibular conditions although his presentation is a bit 1994 :wink:

Of particular note are the drugs that act as vestibular suppressants. I think this is the main reason why you feel better taking Ami or Nori.

Too bad there is no ‘tinnitus suppressant’!!! :smile:

12

It has probably been a little over a week since the sinus infection, and I’ve been on the upped dosage. The only side affect I have is a dry mouth. I haven’t tried any alternatives, as Amitriptyline has always worked for me. Your fear is mine too; but I have heard from others who have been on their medication for years that they are still okay. There was one guy (I’ll try and find his post) on this forum who has been on 20 or 50mg of some med, and he reported 7 years later he was still okay.

I did exercise in the gym last night – I stopped going for a month after moving into a new unit with my partner. Then I took only 100mg instead of my desperate 150mg before bed. This morning I woke up and was around 85-90% normal. I think I’m going to stay on 100mg for a month, then titrate down to 50mg again.

This is what I did when I first had MAV 2 years ago. I started going to the gym before using meds. I think it was the combination of both that helped me reach 100%. Read my comment on this thread:

http://www.mvertigo.org/t/relapse-without-an-obvious-attack/12805/7

A guy who use to post on here called “beatles909” beat MAV with exercise alone. It took many months, but he finally beat it. He did made sure he woke up and went to sleep at the same time each night, and scheduled his eating patterns, and had a workout routine. Supposedly the brain needs consistency before he can return to base level. Also, exercise has so many neurological benefits that help stimulate the brain and break it out of the MAV cycle.

13

I have the dreaded tinnitus as well. It left last time I had it, and it will leave again, dammit! Then again, I’m a singer in a metal band so I’ll probably have tinnitus one way or another haha

14

Found the 7 year survivor (who is probably surviving on his med even longer now that that article is old):

http://www.mvertigo.org/t/still-living-life-7-years-after-mav/7870

15

Haha, awesome, John, keep up the singing! I’m an amateur jazz singer and pianist. Unfortunately I get some distortion in left ear around middle to low frequencies (though no hearing loss there, weird) which can make some amplified music uncomfortable at times. Neuro suggested this is because my ear may have upped the gain across all frequencies to counter the upper loss, but that means some distortion with loud noises at frequencies I still hear well at. Might also explain the tinnitus. Something that makes sense to me :slight_smile:

16

Brianna
Vestibular migraines/MAV is a relatively new diagnosis. There is such a thing as SILENT migraines which is why you (and I) don’t feel any pain. This is also why doctors have a difficult time making this diagnosis. I have suffered for literally, yes, literally 20 yrs! I cried when given the diagnosis. Started on Topamax 25mg and increased very slowly up to 75mg. It takes time, be patient. The side effects are scary, but I’ve been on Topamax for six months and haven’t noticed anything *except for the first couple of days after starting and after each increase. I have not used any of the other drugs or supplements so I can give no opinion.

I have some of the symptoms of the others on this thread but would like to add something important. Hormones, hormones, hormones! Seriously! Pay attention to symptoms while keeping track on your menstrual cycle. I thought all along this could be part of the problem but then other crazy symptoms would happen at other times.
Keep researching and good luck!

  • LaurA

PS. If you look up the symptoms of MAV, you’ll find hormones listed.

17

Hello Briana,

You are not alone!!! I have had the same exact symptoms for the past 5+ years. Even flickering lights (like candlelight or a ceiling fan) make my brain vibrate and shut down and I turn into a vegetable. A ray of sunlight in my eyes makes me weak, vomit and then pass out onto the ground. Patterns make me sick, B&W checkered pattern being the worst, it floors me, Christmas lights make me so bad. I feel better when laying down and on really bad days, the only thing that helps a little is to lay down in a dark, lightless room. I really do know exactly how you feel and how terribly debilitating this is.

Hang in there, do not give up hope, there are answers. Mine was discovered just recently at the House Clinic.

I was diagnosed with persistent postural-perceptual dizziness. This is a recent, new diagnosis in the medical field & it fits me 100%. Finally something that described me 100%. Only a few dr know about this, House Clinic being one of them. If you have been tested for and ruled out life threatening and all other causes for dizziness, then you should check this new diagnosis out. My dr gave me the following website for more info-it is great. The typical patient story reads like our bio.

neurosymptoms.org
Under “symptoms”, click on “dizziness”.

Here’s my story for comparison:
Mine started just over 5 years ago after a startling sound caused me to jerk up in bed in the middle of he night. When I woke up in the morning, I couldn’t move. It was like when you just wake up from surgery and still under the influence of the anesthesia, you can’t move even though you need to (I have had to go to the restroom right when being woke up after surgery and was unable to move).

During the first year, I was originally diagnosed with Cervicogenic dizziness. Had terrible neck pain and dizziness was worse with head movement and when reaching up or looking down. Went through treatment for that. During that time, dr figured out I had developed light sensitivity. Went to a neuro-optometrist.

After a year from my original episode, I was able to return to work feeling at about 40%. Still doing vestibular exercises for light sensitivity, wearing chroma gens filters for the fluorescent lighting spectrum that was causing my brain to go crazy. Managed to work for about a year and had a relapse. On again/off again relapses for a year, then real success started. Began to feel better and found myself not looking in my walk path for the next stationary object to lean on and support myself while walking. Then my work relocated and the new building had bright white LED/bluish lighting and I lasted less than 3 hours my first day. The new location had metal walls and had a lot of glare and reflection. Another leave of absence and after “healing” and prescribed blutech filters, returned to work. After a few months, I was down for the count.

During the past 5+ years, I have seen many specialists and passed every test, MRI, VNG, posturography, blood tests are fine. Ruled out lupus, no glandular problems, immune system is good, went to an allergist, chiropractor, acupuncture. Exhausted. Have tried too many meds and they did nothing. My symptoms fit a little bit of this and a little bit of that diagnosis but nothing 100%. Migraines were ruled out. Drs tell me I am not going to die, which is suppose to be a good thing, but most of the time, I want to die to escape the dizziness that no one has a clear answer for. My system has become so overworked dealing with dizziness I don’t feel rested when I wake up after a good nights sleep. I have become very sensitive or allergic to meds. There was no hope in finding an answer and I was not living. My husband has become my caretaker and he has spent hours searching the internet trying to stumble on something that will help me. I hit a wall and have thought about suicide. My friend was diagnosed with cancer the same year of my onset. I was jealous, at least with cancer there are answers, no one had answers for my illness. I know that sounds terrible, but if you suffered from this dizziness, you would understand.

Still being treated for Cervicogenic dizziness. I still have terrible neck pain. Something is causing my brain to go haywire and preventing my treatments from “sticking” so I can fully recover. It has become worse over the past few years. There is a missing piece to the puzzle that dr can’t find and it is preventing me from getting to 100%. I would start to feel better and then the slightest thing (flickering light, going to the supermarket to “test” how well I am doing) would set off a really bad episode.

This year, a receptionist at one of the “routine” yearly dr offices my husband and I go to asked about me when I had to cancel my appointment. When my husband shared my story, she said she knew someone who had the same symptoms and no one could find an answer, that person went to the House Clinic and they are now fine.

So, we went to the House Clinic. After his exam, the dr at the House clinic asked me for my thoughts about my illness and when I told him I think there is a missing piece to the puzzle that is keeping my treatments from working and giving me a full recovery, he said I was correct. I do have Cervicogenic dizziness and there was a missing “part of the puzzle”. He diagnosed me with persistent positional-perceptual dizziness. The description fits 100%, finally something that is 100% me…and the best news, the words full recovery were used. That is music to my ears after 5+ years.

Hope this helps you. Hope you find answers soon. The illness is really bad and not having answers on top of that makes it so much worse. Hang in there and don’t give up, I know it is hard but you will find the answer one day. Hopefully it doesn’t take you 5+ years. No one should suffer with this.

18

Have you tried Amitriptyline? That’s helped me a lot with light sensitivity, though I still experience the brain wobbles in areas bathed with artificial light, but its much easier to handle now. Also a key to this is finding a way to tolerate some discomfort and expose yourself deliberately to the challenge so your brain gets a chance to adapt. But that’s a lot easier said that done, but meds can help limit the challenge.

19

Hey, if you’re still suffering try and not sure what it is, get tested for lyme disease by the igenex.com labs. They are the most reliable testing labs I have found. If it comes back positive for lyme, babesia, bartonella, ehrilichia, or anaplasma then go to shinealightonlyme.com because they offer an inclusive treatment program for all of the mentioned infections.