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Could this be MAV?


#21

@AlexandraB Yeah Maryland summers can be nasty. 100 degrees is rare but can happen.

I was planning on starting last night but put it off. I got all wishy-washy again, started looking on-line for other medications that may be easier for me to start even though I knew the answer wasn’t on-line, and then it got too late at night for me to take it. I know if I try it for the first time right before bed I’ll just lay awake worrying about feeling side effects. So then I said I’d start it tonight, but the 6 day headache I’ve had this week (the 1st 2 days were constant pain and it was off and on since then) got worse again today and is continuing to get worse throughout the evening here.

So honestly I don’t know what to do. I feel completely torn. I know there will be no perfect time to start, especially with all these excuses I can find. :frowning_face: But I did tell myself not to start a medicine on one of my worst days, actually a lot of people on here have said the same thing as advice and something they try to do on their own. I rarely take any NSAIDs for the pain to avoid re-bound headaches, but maybe once or twice a month I need to, and it seems like I may need to tonight for the pain to break. I also told myself not to take a new medication when I have to be on the NSAIDs. Just 1 ibuprofen tablet can make me feel groggy and even dizzier. This isn’t one of my worst days but is border line…so I feel completely torn. I also can’t keep putting this off, I’ve been putting off the Amitriptyline since mid-February. I need to have my husband home for at least the first day, so weekends are my best shot. Next weekend he’s already busy all day Saturday so again it would be Saturday night.

Before, my side effects were increased dizziness, really bad, starting the night after I took it (I know I took it before bed I can’t remember if it was right with dinner or sometime between dinner and bed). The bed felt like it was moving forward and back, up and down. Since then I have gotten those sensations anyway, but never had before I tried those medicines so back then it was scary. And it’s still an awful feeling. Then I had really bad dry mouth (which I can handle) the next day and was still dizzier the next day. I remember stopping it because I felt like I couldn’t get up on my own enough to take care of myself while my husband was at work. And one of the 3 times I tried it I had nausea which made me stop it. Back then I didn’t know how to tell the difference between nausea from anxiety vs. a medicine, so maybe it was just medicine anxiety, but still. And that was all from 1/4 of a tablet of Amitriptyline, so 2.5 mg.

No one in my close family takes any medicines like these at all. But thanks for the suggestion! I’ve been wanting my psychiatrist to sign off on the GeneSight testing, basically you submit a cheek swab and the company will tell you which medicines, I’m not sure if it’s by class or individual medicine, you’d have the least amount of side effects with (in the anti-depressant category). My doctor prefers to just try super low doses and he says he’s never had a need to use the company. I would qualify to get it done really cheap. But that’s not an option now since I can’t get to his office until I feel better. Such a mess. I need to get some self-confidence, but I’ve had such bad sensations with this beast that I just don’t have much anymore.


#22

The problem with a neurological condition is that it starts in your brain, the epicenter of everything. Your gut and your brain are connected in interesting and barely understood ways. Dizzy, diarrhea, constipation, cycling between extremes - they all go together because the signals get crossed and the chemistry is screwed up.

The thing that works for me is to follow a ketogenic lifestyle. It takes glucose issues out of the equation and settles my digestive system. It’s hard, but it’s been reliable and without nasty side effects. Now when I trial meds, if they cause me metabolic issues, I dump them. Just quit amitriptyline for that reason. Any med that keeps me out of ketosis and spikes my blood sugar is working at cross purposes to my needs, even if it’s helping in other ways.


#23

All of your thoughts and feelings about starting a medication is exactly how I feel when I have to start one myself… and since I already suffer with anxiety, it makes the situation much much worse! Did you end up taking it? Also, have you tried any supplements/herbs/diet?

That cheek swab test sounds awesome. I’ve never heard of such a thing. I would definitely push for that if you’re able to do so in the future.


#24

It’s amazing how the brain and gut are connected… hopefully doctors will start trying to understand that more. It seems like some are really making that connection. I’ve heard our gut is considered our second brain. I believe everything starts in the brain… so if something goes wrong in that department, then other things in your body will be affected.

I’ve heard wonderful things about the keto diet. How long have you been doing it? Right now I’m on a modified paleo diet… I’m not sure how my body likes it.


#25

Hi AlexandraB

welcome, and sorry you’re here, but i think you are in the right place.

it really sounds like classic MAV.

MAV often starts with short mild episodes of dizziness/imbalance which come and go until one day BAM the MAV truck hits you.

assuming that’s what this is (and you do need to get a proper diagnosis), the good news is you can get better from this, although there will be days like you feel like you can’t. the bad news is that it can take quite a long time for most people to recover, with lots of trial and error with medications and other ways to deal with this along the way.

my advice:

  1. try to get to see a neuro-otologist (or otoneurologist) who specialises in MAV as soon as possible. getting a confirmed diagnosis is really important so you know what you are dealing with, and you can stop freaking out. you can also tell people you have a condition with a name instead of “i just feel weird” - which is important!
  2. if anxiety and depression are troublesome (and they usually are with this, especially if you are undiagnosed) then i recommend CBT (cognitive behavioural therapy) which won’t cure your MAV but will help stop you panicking and/or getting depressed when you have attacks/episodes etc. but it’s important to tell the practitioner that you have MAV so they know what it is.
  3. allow yourself the time and space in your life to get better. this is one of the hardest bits, but if you accept that you have an unpleasant condition that will take you a while to get better from, you will realise you will have to let the body/brain heal and not struggle too much. (easy to say, i know).

good luck with this horrible thing, and i hope you soon find the road to recovery.

personally, i’m nearly a year in since getting run over by the MAV truck last may, and i would say right now i’m 70%-80% better, through doing all the diet, lifestyle and meds (pizotifen + gabpentin). i hope to continue to recover - i recently had 6 days with virtually no symptoms so i am making progress.

good luck!


#26

Paleo for years. Keto on and off. I recommited to keto in February. Much better since, though I need to trial a new drug.


#27

Thank you so for your kind words, encouragement and advice! I agree that allowing myself time to heal is one of the hardest things for me at the moment. I’m a mom and a wife so the guilt of not being able to do all the things that I normally do is horrible. I want to recover over night so I can get back to my normal life and duties. Clearly that’s not realistic, so I’m learning to accept that. At least trying…

CBT has been something I’m seriously considering as well. My anxiety/depression has been overpowering lately… especially the past couple days. It’s that time of the month for me and the weather has been crap. Those two things always intensifies my symptoms. I know good mental health has a lot to do with recovery. I think one of the hardest things about this illness (or any vestibular illness) is the loneliness.

I’m so glad to hear that you are 70-80% better! How long until after you started the medication/diet did you start seeing results? Also, were you having 24/7 symptoms like me?

Thank you for the warm welcome!


#28

Don’t be lonely. We are your family and friends. You have us. And we have you!

Emily


#29

Can you have grains on keto? I’ve found that when I was strict paleo… actually more of auto immune paleo, I was super shaky and felt depleted. Oh and really constipated! So I added back in chia/hemp seeds and small servings of quinoa/rice. I feel better doing that. But I still don’t know, my gut has been a bit iffy.


#30

Aw, that made me tear up. Thank you so much, that means more than you know! I’m so thankful I found this forum!


#31

I’m glad you’re here, too. This forum has meant sanity for me.


#32

Every body reacts differently. I do best with no grains, no sweeteners (real or artificial), high fat and moderate protein. You have to find the balance that works for you. Personally, I’m best if I keep net carbs under 40g/day. I am also careful to balance electrolytes. If I do that, my glucose is stable and I have fewer headaches.


#33

I was starting to improve just on the diet etc but 2 days after starting pizotifen I began to feel a clear difference. The horrible constant sense of motion decreased and more or less stopped (although it does come back during bad episodes). At the moment I’m left with weird imbalance, light sensitivity, weird head feelings, and usually a sense of not quite being where I am, if you know what I mean… but some days I feel almost normal.


#34

And yes it was 24/7 for 3-4 months before meds.


#35

I’m definitely trying to find that balance… I know my body likes some grains, but not too much or I get a gut ache. I do well with protein and fat. Dairy doesn’t sit well with me. It’s a lot of work trying to figure out that perfect balance!!!


#36

See, some of my doctors said I couldn’t have MAV because I wouldn’t be having 24/7 symptoms. But it seems like a lot of us suffer with it 24/7. And some also said that since I don’t have a lot of nausea and no vomiting I don’t have MAV.

I’m so glad you are doing so much better! Especially the days where you feel almost normal! Hopefully I can get there myself.


#37

I’m at 24/7.


#38

I’m so sorry :cry: which medication are you planning on trying next?


#39

Effexor, Atavan or duloxetine, provided I can convince my neurologist to let me try one of those. She works for a headache clinic and is admittedly out of her depth. I have a June 4th visit with a neuro-ophthalmologist in a different medical group. Hope springs eternal.

Topomax was killing me quickly. Amitriptyline screws with other health issues. Baseline is not a fun place, but it’s doable if it’s my option. I can get to 60-70% unmedicated with a careful lifestyle.


#40

Oh geez, doctors kill me sometimes :roll_eyes: don’t get me started on some of the winners I’ve seen… one was convinced I had a brain tumor. Another one MS. Even though I have zero symptoms of either, except dizziness of course. I’m glad yours can admit she’s out of her depth though. I hope you have some luck getting a new med. And I hope you have success with your appointment in June!

That’s great you can get to 60-70% without medication though. I’m hoping I can do the same someday.