The Vestibular Migraine Community

New member posting for help, relief and answers


#81

Thank you for those words. Do you think the medicine just suppresses the onslaught of symptoms and that someone could recover without having to take prescribed medicine yet endure the symptoms (me as an example in this case)?
I’m only on vitamin B2 and haven’t touched coq yet for supplements. I’m 7-8 months into MAV since May.


#82

Yes but with a caveat. It may take longer and migraines may block compensation so if you are having a lot of those it might be a good thing to pursue meds. Also the meds help get your sanity back.

Board member Beatles909 recovered without medication.


#83

Good to know. Trying new meds is scary :-/
I’ve been buzzing with more migraines / dizziness than usual.
I do want my sanity back tho.


#84

@Space_Cadet Just as an example, I am currently not taking any medicines for MAV except Xanax and I definitely know (after 2 years of symptoms getting worse and me being home bound) that I’m not getting any better without meds. I’m actually getting worse. Personally I recommend trying meds before your MAV symptoms get even worse. I thought I was bad last year but this year makes last year look like child’s play. I did start a magnesium glycinate supplement today, will see how that goes…


#85

I would also add not being able to go out and be active could exacerbate your symptoms as you need to expose your brain in many different environments to help you compensate. If meds help you achieve this then that’s a good reason to take medication.


#86

That could explain why I’ve been feeling also a bit more symptomatic since I’ve become a bit more of a shut in lately due to depression. Just mostly sitting on my couch watching tv or playing video games. I notice a nice drive usually helps level me out or bringing my dog for a walk. After long term on the couch when I leave the couch I start to feel imbalanced I’ve noticed.
I do notice I have no issue watching tv or playing video games or using the computer (2015 Mac laptop, set to low brightness). I only have an issue after having vertigo (full spin) which has been a couple weeks now… and before that was August which took a week to recoup.

As noted I see my neurologist in 3 months. I’m looking into propanolol (Taking what Jess said into consideration) after doing some reading on the forum, but I’d like to try the supplements first before going towards prescription meds. The B2 has helped and I’d like to see if other supplements make or break me. I’ve read some past threads and it sucks we have to find the perfect cocktail of drugs for each one of us and that we’re like mini human experiments.


#87

If it’s any consolation you can be lucky. I didn’t get on with Ptopanolol but Ami was only my second attempt and it worked wonders at only 20mg on which I remained for about a year or so. It is not that daunting a medication. Quality of life definitely improved. But sounds like your symptoms aren’t as bad as mine were (I was in bed staring at a point on the wall for hours and hours on end at one point , every few days!)


#88

You might want to try the CoQ10. My husband and I both take it and have had no side effects from it. I am always wary of new supplements so I started with 100mg a day (a lot of it seems to be marketed in 300mg capsules but I found the 100mg capsules at Costco).


#89

@turnitaround I can’t agree with you more about how going out and literally “seeing” new environments helps. I’ve gotten to the point where I am too nauseated standing and walking or if not nauseated too off balance (literally stumbling or jelly legs or can’t feel my legs) to do so very often. Whenever I can get out I do, and if it makes me feel worse that day sometimes the next day I may feel a tad better. It depends on the situation and if I over-do it. Since I can’t get out much I tend to over-do it when I do. I have noticed it helps to take regular car rides (as a passenger) as if I wait a few weeks to go out it makes me more motion sensitive when I go in a car again.

@Space_Cadet I don’t mean to scare you I’m probably a worse case than most. The first neurologist I saw had me stop each med if I had just one tiny side effect (like a fuzzy head or something. I was 24 and didn’t know any better, I hadn’t done any research because I blindly trusted the doctor. He had Johns Hopkins training and was the vestibular migraine expert in the area other than the vestibular clinic at Hopkins itself, which I ended up going to a little over 2 years ago). After all the med trials the first neuro put me through (basically one from each class of the major preventatives) looking back on it the only ones I should have actually stopped were the Topamax because at the time I was still working and couldn’t afford to feel so “stupid” and have word recall issues, and whichever med made me super hyper and jittery. I can’t remember which one it was but he said to take it at bedtime & it took me hrs to fall asleep. And back then I tried them on work nights like it was nothing because I hardly had problems with the meds & didn’t know any better. Some of the others I should have continued. I easily tolerated Zoloft back then for 3-4 months, no side effects (which wouldn’t happen now) but also no help with the dizziness. So, he resorted to Xanax which, looking back on it, helped me get through work for a few more years when I couldn’t stop working (as my husband was still in school & didn’t have a full time job for a little while) but it was really just a band-aid that has since worn off.

But, having said all that, I do still share my case because I’d hate to see someone else get so stuck and extremely medicine sensitive and housebound like I am.

I do think supplements are worth a try first, especially since you sound like you’re still sort of functioning. My new neuro has me trying magnesium first before anything else. Later or the next time I feel good enough to type on the computer I want to share some things she said though under the thread from awhile back “ridiculous things doctors have said” because it was almost like she was acting off of outdated research.

It is great, @Space_Cadet , that you don’t have trouble watching tv or playing video games or looking at computer screens. Computer screens were my original and only trigger at first, well along with restaurants. I am still okay watching tv most of the time unless there’s panning camera angles or something. Actually, when I went to Hopkins they recommended using a Wii and playing some games that would help with eye movement and such. It makes me completely dizzy really fast to try. I guess they also suggested the Wii to help maintain hand/eye coordination.


#90

@Jess09 Did you ever try nortriptyline or Amitriptyline ? If not you should. Also instead of being a one-time-warrior going out. Try to do 20 minutes everyday getting out pushing yourself. It has benefits trust me and very soon you will go out a lot more. Also there is no harm on being on a very low dose Zoloft as it definitely helps with anxiety and depression. I was on it for 4 months did nothing to my dizziness but helped me cope better. I find that with the Zoloft i can push myself into uncomfortable situations far more easier. Don’t give up !


#91

@turnitaround

I remember you discussing that propranolol has been said for good inner ear health… That and it was one of my neurologist’s recommendations-- however, the side effect of heart failure I read about gets me a bit nervous. I did a bit of reading on effexor too and the misery of some people on here, especially from the withdrawal from it sounds terrible and I don’t think I’d like to put myself through that one bit.

I’d say I have it more decent than most, but I’m still enduring it like the other’s. I’m starting to think I’m more headachy than dizzy, but the dizziness is there too. I haven’t started a daily log on if I’m dizzy or just headachey or both. I haven’t been logging much anymore cause it’s turning into somewhat of a blur and I feel as if I focus every day more so on it where I have to annotate instead of “just living.” If it’s really really bad or really starting to annoy me greatly, then I annotate. I am glad to read your post above and see that you are getting much better even if progress is slow, you at least can enjoy chocolate!!! haha. Hope you continue to improve.
Also, I’ve been meaning to ask you, were you able to get in touch with that researcher in Missouri?

@Manatee

Thank you for your input, it’s helpful and I enjoy talking to people on here, cause it seems no one truly understands how I feel where I am and they’ll just alway say it’ll pass, but with some disregard, quite possibly because they can’t help subdue the symptoms.
I was actually wondering what people start at with CoQ10, especially since I’m sensitive to ingredients as noted with the magnesium pill issue.
Have you noticed being off at all from starting the CoQ10? Reason I ask is because I was that way with the B2, I went up to 400 mg about 100 mg every 4 days or so.
I was looking at CVS for the CoQ10. Radiance Platinum (brand) is what I use for the B2 and I see it for the CoQ10 as well. They have 120 and 200 tho. Nature’s Made (Neurologist said this is a good brand due to USP approved) has it as well in 100 mg and 200 mg… I’d like to start low.
Also, have you noticed the CoQ10 helping in any way?

@Jess09

Good lord, your story sounds awful… and quite young! I was still in the military then enjoying life at 24. I’m sorry you have to endure any of this and especially so drastically.

I appreciate the heads-up on medicine, since even the supplement magnesium sent me into full vertigo spin. I’m much more sensitive to everything now, so I’m very careful as to what I put in or even try, for fear of the spin again and being set back a good week or so.
When I first started having MAV my eyes would hurt if I moved them up or down. That’s when I knew I pushed enough for the day and needed to rest my eyes-- it slowly got better over time. To this day, if my eyes hurt / feel heavy when looking up or down, then I noticed it’s time to shut down or I’ll push into bad territory.

I’d like to hear your story! I hope you’re okay to type then.
Dated information and most doctors trying to apply it-- hahaha, so sad but so true. They might as well stick their head in the sand and wait for you to get better. I wish the ear diagnosing / treatment technology was much better. There’s been many people I’ve spoken to now who have had some sort of vertigo or imbalance issue. A lot of it relates back to an issue with their ear it seems! I’m curious to see what @turnitaround finds out if he can from a researcher he’s trying to contact.

That’s interesting about the Wii. You could always try with Wii Tennis since it’s a bit slow paced and your eye has to follow the ball and there’s not too much going on.

I have noticed some games will trigger some sort of dizziness or off-ness. In a video game if there’s a background with quick moving animation, for instance, Xbox had this promotion with Honda where you drove a car to the right (side scrolling screen). You continuously moved this car to the right fast, and in the background there’s stars going the opposite way much faster as you progressed. When I played that for 5 mins and looked away then looked back, my tv looked as if it was moving to the left or right on the wall (I think it was left), I can’t recall which direction but I don’t want to experiment to figure it out again haha.
This is what the game looked like in case you’re curious, but please take caution if you watch it. I played it several times over to get to the top to try and win a promotion prize, but stopped after awhile cause the movement was throwing me off.

I’m becoming more curious now about medication and their proper uses and what they trigger to block or create more of if they do in fact trigger in a helpful or harmful way-- it would push people to know what helps them by being in a certain category like a beta blocker or serotonin inhibitor, then people would know which prescription medicine category is their helping hand. It’s all about taking that step and trying tho with the thought that it may make or break a situation.

Once again, thanks all for reading and your replies. You’re like a family who cares/acknowledges/supports.
Thank you.


#92

Yes, I’m not a big fan of the side effects - I started getting chest pain. Amitriptyline was a breeze in comparison!

Thank you, me too … no signs of it not improving so far :slight_smile:

I’ve been so busy lately I’ve not contacted him again, but I’ve been meaning to ask him if he could do a perilymph fistula model.


#93

Hi Space_Cadet,
If you can find the Nature Made brand for a reasonable price, go with that. I like that brand, too, because of the USP approval for many of their products. I think 100mg is about the lowest dose that they sell, so you’ll probably have to start with that.

My husband started taking it a long time ago because he was on a statin drug (for cholesterol) that was causing muscle cramps, and he had read that the cramps are due to the statin depleting the body’s stores of CoQ10.

Then when I saw on this forum and on Dr. Hain’s website that CoQ10 sometimes helps people with vestibular migraine, I figured it couldn’t hurt to try it. So I started taking some of his.

I haven’t noticed any effects at all from it. I can’t say whether it’s helped me or not because (a) I’m still not sure that I really have VM, and (b) my attacks are few and far between and I can go several months between attacks.

I’m also taking 400mg of magnesium glycinate, but I’ll continue to take that no matter what because I have osteoporosis and magnesium is one of the minerals necessary for bone formation.

Manatee


#94

I started the coq10 100mg as of yesterday… I’m a bit imbalanced / woozy like I was with the starting B2 at 100, then gradually up about a week and a half to 400mg.

So, heavy subject below.

I’m extremely depressed, I spend a lot of time alone now. Family is busy and friends are busy. I feel shamed to even go to my parents house cause of my mother who ridicules / berates me in which she claimed she’s had this before yet when I mentioned all the symptoms she doesn’t speak. I’ve seen a therapist and words don’t do much for me. It’s hard to
Meditate when I’m feeling crappy, I can’t focus. I’m still currently unemployed and my unemployment runs out in March and my lease ends in June. I barely have any savings left. I come from a big family and no one has said I can come live with them. I’m honestly starting to question my existence in this life because of depression, with this condition, and barely any money left and no one really there for except words of manipulation from family and friends-- not their hands out to help by saying come live with us. I’m unsure if my condition is getting worse but it’s been bad the past 2-3 weeks or so and no one understands that. My brother said if I killed myself that he’d never forgive me, but what’s the point if I’m dead cause I’m suffering now and no one wants to help. If I have no place to live I’ll be homeless and I don’t want to be homeless and even then I need to eat periodically or the dizzy monster / anxiety / impending doom feeling kicks up. This.is.hell.

If I was to get a job I’d need no florescent lights and light travel (car only)… and I can’t lift heavy objects cause of my accident back in November causing me neck pain and lower back pain and sometimes arm pain with the tingling feeling.

I’m honestly unsure about life anymore and my existence. I’ve talked about it to my entire family cause of my numbered issues said above and yet they said if I talk again about it they’ll call the authorities. No one understands and no one wants to truly help and be there for me. As I write this now I feel like I’m swaying around and my eyes looking around make me feel disoriented / dizzy.
I told them I feel like a burden and they deny it yet they say they can’t and won’t help.

I’ve had thoughts in the past (12 years ago) of dying but now this uncontrollable condition with no support on top of the depression on top of soon to be homeless and to have no savings left.
I feel my back is against the wall very tightly and I have nothing left.


#95

I’m sorry that your family isn’t providing you much emotional support. I’ve been unemployed several times in the past (and happen to be unemployed right now) and that’s a huge source of stress. What sort of job did you have?


#96

Thanks for your reply.
I’m sorry to hear that. Hopefully your husband is supportive.
I was a procurement manager (aerospace) in global supply chain. So funny enough I worked with engineers every day and I say funny enough cause a lot of folks are engineers on here.


#97

See if you have any elongated C7 transverse process or cervical rib as it can cause Subclavian Steal Syndrome which has the same symptoms as in inner ear diseases


#98

OK. So you have some good skills. One thing you could do right now is apply with some temp agencies for temporary assignments. If Aerotek is one in your area, contact them. Others include Robert Half, Spherion, and Manpower. (Do a Google search on “temporary employment agencies Boston,” or whatever city you live in, to find others in your area.) I suggest calling the agencies and talking to someone there first, to get an idea of what sort of assignments they get and what skills they require.

Make a list of all of your skills and software knowledge. For example, you probably know Excel and Word. If you have any sort of basic bookkeeping or accounting skills, those are good. Sometimes a business has a need for someone who can fill in for a short period of time and they need someone who can get up to speed quickly without a lot of supervision.

My first job was with a large company in the aerospace industry. After that, I learned that I much preferred working for smaller companies. There are many, many more smaller companies out there, although they’re not as easy to “find” in a job search as the large ones are. I found that it was much easier to get things done (with less red tape) in a small company.

The smaller companies are also likely to occasionally need temporary help. If a company only has a couple of people who do their purchasing, receiving, and related accounting functions and if one of those people suddenly gets sick or quits, they don’t have other employees who can cover for that person.

I’ve got to stop here - I did something to my back yesterday and it hurts if I sit too long so I need to get up and move around for a while!

AL


#99

@gmathew
How would I get that checked?
Mine came after having an edible. Sent me on a lucid bad trip then after that I’ve been screwed up since then. That was late May 2017.

@Manatee
Thank you very much for this. We do have Aerotek here. I’m in CT. I liked the logistics of purchasing.
Thing is, my family is telling me to get a job to get back on my own feet, but I was actually interested in computer programming. They’ve said to get a job and do programming on the side.
My only issue is having to work from home cause of my symptoms and florescent lights set me off. I get dizzy / slight headache while under them then a badddd headache after being under them.

And I hope your back feels better!


#100

Well, if you’re qualified to get a programming job now, go for it. But otherwise you’ll most likely have to get a job that will pay your bills and allow you to take programming classes in your off time. You might also check to see what sort of assistance the state of Connecticut offers for people who have been laid off. In some states you can qualify for funds for training, and they also have job search centers where you can get help with your resume and that sort of thing.