I know many people write on this forum when they are feeling scared and desperate, and this is probably gonna be one of those posts. I wish that people who have gotten better could stick around more to provide some hope or insight that everything will be ok. Over the last six months I have gone from feeling much better, to feeling much worse, like I’m back at square one. I am also pretty young and that terrifies me. I miss the person that I am. I know she is inside somewhere, but when I feel bad it’s like a veil over my whole life. It is so hard to go to work and pretend like I don’t feel totally crazy. And I feel so sad that the one person I tell everything too is my partner. I don’t want to upset him but it feels comforting knowing that I can talk to someone fully about what’s going on. I guess I just hope that it can get better? Life doesn’t have to be perfect but I’m afraid of suffering so much. I just wanna find a way to live fully and feel great most days. I’m feeling very scared and alone right now.
@Camille_Chaf I hear you, I’ve been feeling the exact same way lately. I haven’t been better in over 2 years (have actually been apartment bound for 2 years), but at one point in my 6.5 year journey with this I got maybe 85% better, went back to work, and got worse again and had to stop working and continue to get worse and worse.
Lately my anxiety has been through the roof about all of it. I have severe medication anxiety and I’m to the point where I know I need a medicine to get better, but after trying so many at low doses and being so sensitive to them, I don’t know how to deal with side effects and being worse anymore. I was supposed to start Lexapro today or tomorrow, and having already tried it twice (only lasted 1 day each time) I know it gives me nausea and heart burn. My biggest anxiety is around nausea and I can’t bring myself to take a medicine that is pretty guaranteed to have that side effect.
This medication anxiety has been tearing me apart. I’ve been extremely emotional about it, and any little thing can set me off into tears. I’ve tried multiple therapists over the years but haven’t found anyone to really help.
I too am very afraid and feel alone, even when my husband is here with me. Even more so when he’s here, actually. He and my mom are my support system, and I’ve going in vicious circles about medication worries for a year now and they don’t know what else to say to help me. My husband is literally silent when I try to talk to him about it now. I feel emotionally drained, overwhelmed, and just don’t know what to do.
Sorry this wasn’t a success story to give you some hope, but rather a “I’m in your boat” message.
Camille really sorry you are feeling rubbish and worried.
Guys, I hope she doesn’t mind me referencing her but @mellybob recently checked in after a while dealing with a long term relapse and she seems to have got it back under control. Part of that seems to be getting the meds right?
There seems to be few guarantees with this thing, there is a lot of uncertainty with it you have to come to terms with but people do get it under control
Hang in there you two!
thanks James.
Hello, I’m replying as someone who appears to be in remission - about 11 months now. It is difficult to give advice on how this is achieved, however - as I simply don’t know!
The short version back story is that I have had vertigo on and off since I was 20 …I’m now 69. After about 12 years of thinking (aided by Dr’s comments!!) that I was going nuts - I was diagnosed with Meniere’s - by which time I had lost most of the hearing on the left (affected) side. Scroll through many years of intermittent periods of ‘visits from Mr.M’ as I called them and sometimes years ‘in remission’…to late 2015, when I had another severe visit. After several months, this seemed to clear…only to re-appear, morphed into something FAR more like MAV than actual Meniere’s. This lasted a little over a year, getting gradually easier to cope with (many thanks to this forum!!) until it seems to have departed almost entirely. I’m hoping for a really long remission!!!
All I can tell you is that I have never taken any prescription medication for the condition, apart from Stemetil for nausea when necessary. (many reasons…including that local Dr’s have never even suggested medication) . I have a daily supplement routine that includes Magnesium slow release, grape seed extract, Ginko and Vit B complex. These were recommended by Karin Henderson for Meniere’s…and I’m not in a position to verify whether they have been instrumental in my remission or not - but I believe they help, as a healthy body is more able to fight any kind of onslaught!!!
I am so sorry for all of you who feel helpless and hopeless - I have been there many times! Those around you also feel helpless, and this can lead to them apparently ignoring your problems, when in fact they have just heard it all before and can’t help…so kind of zone out.
I wish everyone the absolute best for 2018…here’s hoping this will be THE year of recovery for you!!! I still pop in and lurk on this wonderful forum, as it helped me so much to connect with others with the same problems.
I don’t know how anyone can do this. The past week has been no fun. Work has been extremely hard to get through. I wake up everyday feeling motion and feeling like the world is a surreal, scary nightmare. Everything looks crazy. And I feel like there is a veil between myself and reality. It’s awful. How can anyone do this?
Camille, you are only 2 years in, which may sound like a lot but I’ve read at least one person’s account of recovering after 10, with huge relapse somewhere in the middle of that.
So there is time for you to improve, and time for you to try some new things. You should look at some other medication if necessary and perhaps consider another opinion if you are losing confidence in your current doctor, if only to back up your current diagnosis.
Hello James,
I know I may seem kinda desperate at times, because I really am! But yes, my current plan right now is to go to the doctor next week and we are going to try and new medication. I actually love the doctor I found. She is very supportive and doesn’t think it’s just “all in my head.” I am two years in, and the first year I didn’t even seek help, so I have to remember that. I only started taking medication last June. Sometimes it’s just so overwhelming and crazy to get through tough days an I get overwhelmed reading everybody’s stories. But on the other hand there are people who are on this board for a few years and then leave so I hope they are all doing great and I hope that will be all of us soon.
It really is and I don’t blame you for feeling this way.
My first year was simply unbelievable, never in my wildest nightmares did I ever think I’d experience the hell I was in then - at one point, every 3 days I’d have a migraines where I’d be unable to move, not even close my eyes (or i’d throw up/have massive discomfort) for 14 hours on the trot. At the end of this i’d have eyestrain because i was having to stare at a single point on the wall for all that time. I did actually think about suicide every so often during that period.
I’m very lucky to have got this far - but remember I’m nearly 3 years in (this April). It almost feels, touch wood, like a very slow remission for me now. In September I went med free, thats 2 years into MAV and 2.5 years into the whole debacle (including the first 5 week period of severe imbalance).
@mazzy Thanks for sharing your story with us. I’m sorry that you’ve suffered for so long. I’ve tried to get on some supplements. I tried Migravent that had a mix of magnesium oxide, Vit B 2, CoQ10, and butterbur, but I ended up having a mild allergic reaction to the butterbur and the doctor told me not to try it again. Then I tried Magnesium glycinate, just 100 mg to start, and had sharp stomach pain and a lot of bloating. It’s possible my body could adjust to the magnesium, but it would take a lot of time to build up to a therapeutic dose and possibly do just as much damage to my stomach as a medicine would. And, my neurologist believes I’ll need more than magnesium at this point (i.e. an actual medicine) as I’ve got such a bad case. But hopefully I will find a medicine that I can be comfortable trying soon.
Hi James,
Yea I think about suicide too. And I would never do that. I do not want that to happen. I just really wish there was something I could do to make the bad days easier to deal with. It’s just too much sometimes. My symptoms right now are more like my brain is like exploding lol. Like very surreal.
Yes, and there is a BIG difference between thinking ABOUT it and PLANNING that. I no longer have these thoughts, I’m glad to say. And you realise in any case that you would simply let too many of your loved ones down for it to be even feasible. Let’s not discuss such darkness …
It’s the only thing sometimes that makes me feel like I have control. But I love life and I could never do that. But I am so scared. Been feeling crazy every day this week and terribly off. I would hope there is another way to cope than just xanax or something. It’s crazy how you can go from up and then down. I
Someone said this before on this forum…
One can argue if you even have MAV if suicide has not crossed your mind.
I pushed myself on this road-trip. The driving was fine. The cabin I am staying is vestibular hell. The floor has got so many ups and down and adds to my imbalance. Spent one hour in bed with rocking and swaying wondering if I should take the lorazepam I save for moments like this.
Camille I got better and then I got worse as bad as my initial attack. I am in the same boat as you and I struggle everyday and live in hope that one day I will get over this. I laugh when people tell me their troubles because nothing compares to this crap.
Yea, this is very difficult. I don’t even know what to say honestly except that I know we have to keep pushing forward. It’s very hard.
Nothing like walking into a dark room and your mind thinks you stepped into a deep hole.
As each days go by we hope to get to better even if we have to endure whatever this may contain for now.
I’ve thought about “the darkness” as well and have posted about it not too long ago. I’d hate to see someone on this forum go. Everyone on here feels like a life line that actually understands and is there for each other. We’re like a big AA group haha.
@Space_Cadet Of course not. Leaving the earth is not something that I want at all. What I want is to get better! And I also wish there was something I could do on the days I really don’t feel good, to feel better. But I’m not sure what my body needs and that’s why this is so overwhelming. The last week my brain feels totally checked out, dizzy, and crazy. I feel like there is a veil over me. I just wanna know how to get better. Do you have any advice? How are you feeling?
My tension headaches are back since getting my eyes dilated 10 days ago (Jan 5 2017). I’m still drinking a lot of water and I’m eating better again (a lot of plain meals). I abide by the migraine diet sheet that I uploaded strictly. Bread isn’t an issue for me luckily, but I haven’t been eating a lot of it cause I want to continue to losing weight and not feeling bloated. I haven’t tried everything on the migraine diet list, but what’s on the good side is what I do eat.
I’m looking into getting a Himalayan salt lamp since my cousin in Canada had one and I’ve only read / heard positive things from it. Plus, it gives off a good night light amber glow.
I haven’t started exercising yet either. I’m still just strictly on 400 mg a day of vitamin B2. My inner ear pain has reduced since this all first started but it still appears sometimes like the other day when it was a bad rain storm. I haven’t had any alcohol since August 2017. I try to go places like my parents and such just to get out of my place and see my dog. If I’m more symptomatic than usual I’ll avoid places I know where it’ll worsen my condition (grocery store, shower). I also try to keep sodium low.
Lately I’ve been making turkey burgers (bought ground turkey and forming patties out of them). Then having broccoli or green beans and sweet potato. I also eat cereal too since it’s easy. Honey nut cheerios and frosted mini wheats. I do use milk. For desert I buy sugar cones and use Friendly’s vanilla ice cream. I also eat apples sometimes before bed so I don’t wake up middle of the night hungry. If I ran out of apples then I eat the oatmeal. (Oatmeal in a can that’s plain). If I’m feeling like fast food or eat out. I usually get a burger with American cheese and French fries, but no pickles and no onions. Also, I love stuffed French toasted. French toast with cream cheese in the middle. They also come with bananas, strawberries and blueberries. I tell them no bananas tho. I just saw an apple pie recipe with 4-5 ingredients so I want to at least try some more desserts I can have. I hope this helps you in some way. In about 4 months I’ll have had MAV for a year, so on my post I’ll list what’s been changing since this condition morphs over time. I hope you get better!!
TLDR;
Drink lots of water, stay hydrated
Always stay well-fed and try to abide by the migraine diet as much as possible
Try to still go places that are outside or where you’re comfortable just to get movement
I hope you get better and this list in some way helps you or anyone for that matter
Here is the list of safe foods that spinninggirl’s posted which has been a life saver for me.
I mostly get what she listed on the freezer section.
Please do not get the fosters turkey meatballs though. I have tried it and it’s so bad lol.
@space cadet I don’t seem to have any trouble with food, at least that I know of. I havnt tried to manipulate my diet too much except for to eat healthy. But when I’m feeling good I’m feeling good, and when I’m feeling bad I’m feeling bad. However, I’m still trying to figure out if there are any more test I can do. I wanna do as much as I can.