I have not been having a good day today, although none of them are ever “good” anymore. I feel myself getting sucked into a place of desperation and hopelessness as my symptoms continue to progress on a daily basis.
Heck, I still haven’t even been diagnosed, despite my many, many healthcare visits. I will be seeing Dr. Hain in a couple of weeks and am really hoping he can help me. Many of my symptoms sound like MAV, but conditions overlap so much it’s hard to know what is really going on.
I am very sad today and feel worse than ever. I have read and re-read the success story pages. My personal hell started five months ago, which I know pales in comparison to some of you. If it weren’t for my children I don’t think I would have the courage to fight “this.” I don’t know how I would live if my situation doesn’t improve.
I’m so sorry to vent. The slow rocking sensation along with quick side-to-side shakes, bouncy floor and bobbing sensations make me CRAZY. And there is also the weird pain I have in my neck. (I NEVER had any issue with my neck before. What is going on??) The bilateral tinnitus gets louder and then softer, but I can’t find any pattern. Finally, there’s that horrible pressure in half my head. (That was particularly strong today…)
I know there are so many people suffering from various disorders affecting the vestibular system. I guess I am looking for words of encouragement that this will get better and that I will be able to carve a life out for myself. Today is my lowest point yet…
Hang in there. I know it feels like you’ll never get better but you will, it just takes time and the correct medicine. Did you try the Buchholz diet? Are you on any meds? Usually the Dr’s say start with the diet for control of the migraine then if that doesn’t work Dr’s usually add a medication to see if that works. I’ve only had MAV for 8 months and it felt like I would never get better. I was so depressed and cried alot. Now I am 90% better. There is hope. Don’t be sorry for venting, we are all here to help each other. I understand where you are coming from. Dr. Hain should be able to get you on the right track to getting well again. Good luck with your appointment. Hugs to you, you will get through this. Stay strong
I’m so sorry that you’re struggling. This is not an easy thing to deal with and it’s totally OK to have bad days, get down and feel overwhelmed. I know I speak for all of us on here… we understand.
I have been dealing with MAV since July 2009. I have gotten better. I have gotten worse then gotten better again. Now, I’m feeling better again after having a really bad few months this summer. That seems to be how this monster works with me. But… Here’s the kicker, until I calmed myself down and dealt with the anxiety that can come with something like MAV, I felt horrible and just kept getting worse. I had to calm down and deal with the panic attacks, not sleeping, and the dreaded “what if” syndrome before I saw any improvement. Our brains are so sensitive, they can’t cope with much. I did some acupuncture treatments and while they didn’t help my 24/7 rocking etc. they made a huge difference in how I was able to cope and that was a turning point.
Yes - there are a lot of illnesses that overlap and it’s terribly scary and frustrating. I searched for a firm diagnosis for over a year. That’s not a good idea. The more you try to find what else this might be, the more you drive yourself crazy and the worse you feel. I had a hard time accepting that I had MAV in the beginning - the people on this site got me through that time. MAV isn’t something that you can prove so it’s a diagnosis that can be hard to get to. If you feel that this could be MAV then stick with it, you can try and find a doctor that will support you in trying different meds. I hear that Dr. Hain is a good one to talk with. Have you started the diet? It works for some, not all. I will say I do have a few triggers that it helped me find but it wasn’t a cure all. You have to reach deep and find your patience and just keep pressing forward. It’s not easy and can test to to the breaking point. You’re stronger than you think. Take one day at a time.
This is an illness that can affect every aspect of our lives and it’s not something that people can see so we’re overlooked and misunderstood. You may have to modify your lifestyle, slow down, take medication, etc. etc. Feel what you need to feel because this is a real disorder, but don’t quit fighting. You’ve made it this far and you’ll make it farther. You may feel badly now, but that doesn’t mean it’s forever. I was right where you are about 5-6 months into my MAV journey. I’ve been there and I came through it. You will too.
Listen to me. You WILL get better. I will not lie to you and say you will ever be ‘cured’ but you WILL improve and stabilise. We have seen it on here many times and as all my life savers on this forum have told me since my relapse 6 weeks ago - I DID IT ONCE AND I CAN DO IT AGAIN!
I had/have EXACTLY the same symptoms as you. The rocking, the floor bobbing, head pressure, being pulled from pillar to post - you name it. I never thought it was possible that a drug could combat an illness that was so severe and I wanted to die, I was so desperate, so ill and so f*ckin sad
BUT… there is a way. Trust me. And I am also not going to tell you that the path of recovery will be easy because it wont. The drugs are horrible and can make you feel worse than you already do (to start with). I thought the Nori was going to finish me off the first 3 - 6 weeks I was on it. But I was determined to persevere and I’m glad I did. The Nori … ever so slowly… started to bring things under control but it took a good while. I was on the Nori for 9 months before I added the Gabapentin which was liquid gold and did WONDERS for me.
And there are the crashes. I was stupid enough to think it wouldnt happen to me again. But it did - although nowhere NEAR as bad as round one! But I realise that I contributed to my crash because of the amount of stress I’m under and trying to work 42 hours a week :shock: I dont know who I’m kidding half the bloody time!
Between now and seeing Hain you will do the following:
Rest as much as you can
East as well as you can but eliminating all known migraine trigger foods (the 6 C’s etc)
Drink your 2 - 3 litres of water each day - dont drink any other crap.
Bung in some supplements (Magnesium, B vits, COQ10 100mgs +, Fish oil, Gingko biloba and if you’re having trouble sleeping, throw in some Valerian)
Eliminate stress. Get others to help you with the children. Get a cleaner in for the house. Lean on friends and family. People WANT to help so let them. DONT GIVE UP.
I know you are sad. I’ve been there a million times. But I promise… there will be brighter days. Have faith.
KL, I don’t have a lot to add to the words of wisdom already posted here, but I do think that it is VERY helpful to take back some sense of control. By reading here on this website you’ve started that process because knowledge is power. The things that have been suggested already - reading Buchholz’s book about the diet and trying the diet, sleeping regular hours, drinking plenty of water, considering supplements, managing your stress - all of these things are about taking a proactive stance against this THING even if you don’t have an official diagnosis.
Fighting back will help alleviate the sense of helplessness that comes over most of us at some time during this ordeal.
I hear ya today! I am feeling crappy today and its very difficult. Can you take a night to yourself and just relax? Like an entire 2-3 hours even and just try not to think about this, try not to feel sorry for yourself or think of how unfair it is, just watch a really good movie if you can…or listen to soft music or have a bath. Just try and not focus on it and have peace??
Best Wishes, it does suck! Do hang in there…we are all stronger than this. You can do it. But be very kind to yourself!
I get it. It’s interesting because I think we sometimes skirt around the feelings we have of suicide. We (for sure I) try not to be that “dramatic” and actually say it. But I think it’s import to know that other people feel that way, and that you’re not crazy for feeling that way. I found it very helpful to talk to my therapist about it, it kinda took the stigma away.
I’m very early in my MAV journey. I’ve had symptoms since last Nov. and was diagnosed the beginning of Aug. I’m on my first med, which I’m not sure is working, but at least I have a path to go down to try and get better and you will too.
I don’t have children, but if it wasn’t for my mother I probably would have killed myself. I don’t want her to go through the pain of losing a child. Honestly some days, that is all I have to hold on to, but it’s enough. You brought up a good point, your children…hold on to that.
Hold on to the fact that
You won’t emotionally feel like this forever
You wont physically feel like this forever
You will get a diagnosis
You will find the right meds
You will feel better
You will realize you can make it through the worst of days
You will laugh again
Take care of yourself and don’t beat yourself up for feeling how you need to feel. Just stick in there for your kids and all the other people in your life who love you.
I want to thank everyone for your kindness and encouraging words. They meant so much to me. (In fact, I cried as I read all the responses…)
I also wanted to report that I had the BEST DAY today that I’ve had in a long time. To the contrary, yesterday evening was the worst day I’ve ever had. I was so extremely nauseated from the extreme dizziness that I took a Phenergan (for nausea) and went to bed. I slept 7 hours straight without waking up one time.
I believe the excellent sleep was the main reason I’ve felt much less rocking and the dizziness I felt, I’ve been handling much better. My husband and I went out to lunch and then for a leisurely stroll through each aisle in Costco. (I wanted some exercise, but it much too hot to walk outside!)
Anyway, thank you again from the bottom of my heart for the hopeful messages!