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So discouraged

So discouraged, Each day I hope this will get better but nothing seems to change. I’m basically not on any drugs other than 10 mg Of nort. and some vitamins. Even though I don’t have the terrible symptoms of some people, I’m constantly feeling like I’ve had way too much to drink and have a big head. I am so tired all the time. When I sit down or lay down it basically goes away so all I want to do is sleep. This seems so hopeless, I can hardly work, someone please tell me the best doctor to go to or if there’s a way to make this better. Thanks

Hi, this article was helpful for me to keep my head up and try new things:

I completely understand your discouragement.

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Know how you must be feeling. You obviously need to make some changes. The link @ander454 posted pretty much sums all the options up. It’s time to take positive action. The only way to see improvement is to make some changes. Think through where you are, meds/diet/lifestyle wise and then tighten the regime. @shazam saw a New doctor very recently and you may find the gist of her summary of his advice relevant to you.
Dr. Priesol’s (Boston) advice to me

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Sorry to hear about your current situation. It is discouraging.

I’ve had really discouraging times that I thought would never change, but somehow they passed. There are a lot of nice folks on here who can empathize and offer support.

I don’t have any helpful articles to share, but did want to chime in and say that I really hope and pray that you get to feeling a little more encouraged soon.

Wishing you one brighter moment after another :waxing_crescent_moon::first_quarter_moon::waxing_gibbous_moon::full_moon::full_moon_with_face:

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I just wanted to share with y’all. I have reasons for high hopes today. During all of this I have been going back-and-forth with my eye doctor trying to get the right prescription and things like that. He had mentioned that my eyes were misaligned, meaning one looking outward and one looking upward, not so that you could see or notice but enough to cause me some double vision, he prescribed glasses with prism to correct the double vision but just yesterday I happened to stumble on the name of an ailment about eyes being misaligned and howIt named everyone of my symptoms so I’m hoping I never had the migraine thing anyway I’m hoping I can fix mine with a pair of glasses with prisms. I will let y’all know, thanks for your help, What I meant to say was I will have to start wearing the glasses because I’ve been used to contacts for so long but I will gladly do if It will get rid of this crazy feeling in my head. Thanks again

Good luck!

Now let me guess. You have just discovered you have some type of Strabismus but it would have been referred to as either a Heterophoria/tropia or Exophoria/tropia? Commonly known as a ‘squint’. Join the Club and Good Luck with the prisms. They should certainly help make the eyes work better together.

Yes the symptoms listed on the internet certainly sound almost identical to those of the above and I imagine they must be for some people. These conditions are congenital, you are born with them except for sometimes Vertical Heterophoria which can rarely occur as the result of some form of extreme trauma. I’ve had a Heterophoria all my life. About 5% of the general population I think it was I read have it in one of its several forms and interestingly it’s about 10% of migraineurs. I never experienced any symptoms from mine until VM hit. Very strong links these two conditions. Pre a VM diagnosis I trawled around and saw lots of top specialists but no one could ever give me a definitive answer as to links. If my VM just happened to be the result of my congenital condition I could say prisms didn’t control my VM. I’ve had them for 35 years. Of course if your condition does stem from your eye condition you could well be much luckier than me which would leave you with the quandary why did all the symptoms start now. You were most probably born with the condition What’s changed? Advancing years can be a factor in eye muscle control for sure. You may be aware of others.

If you use the forum’s Search facility you’ll find quite a lot of material on the subject worth reading. One very important point I’d mention is prisms re-direct light. You will be more susceptible to sunlight wearing them so make sure you have an appropriate coating on your glasses and watch the direct sun. Not many opticians will tell you this. It was decades before I hit upon that fact but fortunately no damage done.

Good luck with the prisms and I do hope they help.

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I got prisms and they made it worse :frowning: I was hoping that the need for prisms was my issue. I eventually just went back to normal glasses. But any change in eyewear usually causes a little blip. Hope you had more success than I did.

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By way of warning prisms can take some getting used to. Quite likely they may make you more dizzy to start. Any new eye glass prescription can. It’s worth persevering a while because it is possible it might just be your cure. Much like preventatives the first prescription may not be right for your eyes and sometimes it’s necessary to have it changed early on. In case that sounds odd I can explain. It’s not that the eye doctor got it wrong. Sometimes it’s a question that the brain won’t tolerate such a powerful prescription and it needs to be tweaked. I’ve had that happen to me several times both pre VM and since. Another word of warning specific to our current circumstances should you happen to end up attempting VRT at any stage don’t forget to advise the practitioner about your prisms. They need to be aware because there can be distortion issues whilst trying to do eye exercises which could make you very nauseous indeed.

Please don’t feel discouraged by these comments. If prisms are your answer that may prove a far better prognosis than VM. You may not need any of the above advice but it’s there ‘in case’. Just trying to help your avoid some of the potholes I’ve fallen into owing to lack of information in the past.

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The brain is amazing in the adjustments it can make in regards to what it sees. I recall many years ago, an experiment was performed where a test subject wore inversion goggles for about two weeks. The goggles flipped everything 180°.

At the end of the two weeks, the test subject woke up one morning and found that the brain had rewired itself and everything was right side up.

The next stage of the experiment involved removing the goggles. When the test subject took off the goggles off everything was upside down again. It took about two weeks for the brain to revert to normal.

Why anyone would chance messing with their vision I have no clue. They couldn’t have paid me enough to do that experiment.

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I think @turnitaround it was who posted something about this back along. Like you I wouldn’t have wanted to be a volunteer there either. No way.

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First I would like to say thank you to all who replied back to me. I’m still having trouble navigating this site, so if I post something, I’m not really sure where it’s going. I just hope someone can manage to find it and read it. I guess I get discouraged easily, I’m so in hopes that these prisms for these glasses Will help. It’s so hard to tell because they are awful to get used to. I’m not even sure I have VM, there’s no test, and the doctor just says, it could be this and wanted to give me a bunch of pills. I never have any attacks, it just seems to stay the same heavy head and off-balance feeling all the time, except for when I sit down and it’s completely gone when I lay down. I’m not positive about VM but I am positive that my eyes are misaligned and what I read said it’s pretty much the same symptom, even in the location of the head where I feel it. I’ve been wearing contacts for so long I’m afraid I will get used to these glasses with no help with the head problem and I’ll be stuck with glasses not being able to go back to contacts. I guess I have no choice but to try the glasses, I know they won’t help stored away. Maybe someone can tell me if that’s what I should do. I’m sorry this is so long but I finally found a place I could reply so I didn’t want to lose it. Thanks again

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Not to worry. It’s in the right place. Prisms can be difficult to adjust to. As I stated before. You need to be very careful because they will affect your spatial awareness. Change you 3D vision. Could take a week or so. Not sure how best to help you further except to say probably best to start putting them on first thing in the morning. Not to let your eyes become accustomed to their usual contacts first and then change and not to change back later in the day. Just stay with the prisms. As I had prisms long time pre MAV I’m not sure how long it might take but since MAV I take about a week to adjust to new prescription and that’s not a change of prism but just an increased magnification.

Not sure exactly what you are asking. I don’t know if it’s possible to make contacts with prisms. No idea but once your brain adapts to prisms it’s not likely you will be able to go back to glasses without prisms. Not unless you’d had corrective surgery which isn’t generally an option. Going without prisms at a later date would be far more confusing for the brain than say reverting to your previous prescription with ordinary glasses because you’ve broken your new ones and sent them for repair. The use of prisms involves different usuage of various eye muscles apart from anything else.

The decision must be yours. Nobody else can tell you what you should do and nobody knows what’s going to give you the best outcome. In many ways it’s much like trying a new preventative.

I guess just hoping could adjust to prizms without losing the ability to wear contacts. Even if just for a short time

I had this feeling too for a year or two. I went to a vision specialist who couldn’t find anything. I did vision exercises like gaze stabilization, but it didn’t help a whole lot. It’s important to realize that with balance issues there is a disconnect between your vestibular and vision systems so it’s natural for both to “disagree” with reality.

If its chronic VM, your doctor is doing the right thing. Most people who have it this bad need medication to help them get out. I hate taking medication personally, but I was going nowhere without it.

I used to say the same thing. In fact when I first saw my neurologist I told him I don’t have headaches. But do you have head pressure? You said “heavy head”. Are there any days where your head is “heavier” than normal? That would be an attack. I know it might not seem that substantial over regular baseline symptoms, but that’s how my VM was.

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It’s not the ability to wear contacts that you would lose. It would be the inability to see properly without the prism mechanism. Maybe contacts can be made with prisms. Enquire. I have no idea. Worth finding out if it’s stressing you out. Keep swapping between prism and non prism won’t help your brain at all. It needs to adjust and to do that it needs stability.

My wife says I keep asking questions hoping to get the answer I want. Maybe she’s right

Good for you. Just keep asking. You might just get the right answer eventually. Btw I hope she means it as a compliment because it is.

I’ve been on here a few months and still struggle with navigation…lol.

It took me a while to accept my VM diagnosis also. I had a nice concrete head/neck injury so figured that was the cause of my migraines and severe dizziness.

I also didn’t want to take the migraine meds at first.

It’s a process that’s different for everyone. Take your time.

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Ive been dealing with these prisms all day and they are terrible. But, and i dont want to party just yet , but i dont think i,ve feeling the vestibular issues today. Its hard to tell when you feel so dizzy but i think something is different. I surely how so, if these prisms dont help the heavy head and out of balance feeling i will go back to contacts, thank you guys for the replies