I’m so desperate right now I could just cry. I thought my vertigo attacks were over until a month ago. Same shit different year! Exact same time as last year. I swear the weather is affecting my MAV. I’ve been living in Oregon for the last 18 years. I moved from Texas and I hate it here so much but can’t move. When the rainy weather hits my MAV goes into overdrive. I can hardly function right now. I’ve been fine all year with the exception of what I call mini vertigo “jolts” but I can deal with those. Is there anyone out there who notices that cold rain weather makes them worse? I welcome any advice right now. I feel so alone with this condition. Thanks
Oh Leslie that sounds horrible. I don’t know what to say other than you’re not alone on here. You didn’t mention if you’re taking anything or seeing a doc that you can check in with. I’m wondering if barometric pressure could be a factor. Maybe lack of sunlight this time of year?
Well, as you can see I don’t have the answers, but please no you’re not alone and please don’t give up hope.
Yes I saw a great doctor last year who put me on Verapamil but I’m taking a very low dose 20mg in the morning and 40 at night. I lost my insurance for almost a year so I haven’t seen him and he hasn’t been able to check up on me. He also wanted me to start VRT but I’m so motion intollerant I never did. I feel like the dental work I had is contributing as well. I have bad TMJ and have a high spot on my new crown and I think it is causing neck pain and vertigo as well. I see my doctor on Monday thank God and I am going to have him do all the tests again. I had a positive ECOG and VEMP test along with a CT of my inner ear that was a little questionable for a Superior Canal Dehiscence but he really thought I displayed more MAV symptoms and a dehiscence requires surgery. I just hope that’s not what it is. I also have degenerative joint disease and bone spurs in my neck that neurologist said was causing my vertigo but after I saw this new doc who is a neurotologist he said that is not a diagnosisi anymore. This is so horrible because I have 2 children who count on me everyday and I just want to be normal again or at least close to it. Last year this doctor said, “You WILL get better”. I hang onto his words everyday. I hope he has some answers for me
Hi Leslie
I seem to to relapse every year at winter time as do a lot of dizzys I dont know why I gave birth 8 weeks ago which just made me a thousand times worse.
I know most years from Nov through to January Im bad with this I did feel a bit better tuesday but got worse again thursday and there was a huge downpour here that day I never thought the weather affected me but I think it does now as I always feel better the end of spring and summer time.
i feel your pain Ive got three children and struggling to cope x
Thanks so much for the reply. I would give anything to move out of this rainy hell hole but my ex-husband will fight me regarding the children. It’s even one of the reasons we got divorced. He never took my health seriously. Of course my 7th grader refuses to move too. I wish I could just do a trial move for a year to somewhere warmer (I grew up in Texas) just to see if it works. I am in total shock and disbelief that this is happening again. I just took 1/2 of a 2mg valium (hate them) and today it’s not even enough. Thank God I see my doctor on Monday (if I can make it without wanting to slit my wrists) and hopefully he will have some help for me. I wonder why this happened to me? I would give anything to have the “old me” back.
Could of written the last part myself none of us deserve this I always think WHY ME? you know what have I ever done ts ruined most of my twenty’s I was 23 when I got it , bag of shit
I know! I used to be so much fun! I could ride any roller coaster, work out, weight train, run do anything! Have some drinks. Now I can’t even turn in one circle let alone enjoy even one glass of wine with friends who never see me anymore anyway! I’m like some kind of freak! Except to everyone on the outside I should feel so lucky. Everyone says, “Leslie, you have a beautiful family, you look great, look in shape, look fabulous for your age! Can’t you be thankful for that?” NO! I’m not! I would rather look like shit on the outside and feel good on the inside at this point! The only reason I look in shape is because I can’t eat shit! Gotta follow a low sodium AND a migraine diet. Haven’t had a slice of pizza in over a year! Yes I’m thin now and look better than ever. I don’t eat! I can’t even enjoy food! I live on twigs! I am so bitter right now! All I can do is pray that when I see my doctor on Monday he has some help for me. Hopefully I even make it to work Monday or I’m gonna get fire. FML!!!
I’m sorry that things are so rough right now. I have the opposite problem with regard to sunlight & rain. I live for the rainy and/or grey days. Snow is good too - as long as the sky is grey. Barometric pressure changes as well as barometric pressure above 30.00 affects me as well.
I wish I had some great answer. I had to quit asking the “why me?” question coz it was only adding to my distress. I don’t really think there is an answer for that and that actually works better for me than wondering “why?” or believing that all this is part of some great plan/fate/whatever. Sometimes life just sucks and those of us with vestibular disorders just got a bigger dose of that than those who don’t have vestibular disorders. Again, I am sorry that you are having such a rough time with this right now. I think that when we get into a smooth, low-symptom phase that lasts a long time (in my world that’s longer than 2 weeks), then it hits us especially hard when symptoms flare up again. I put a phrase on my fridge to help me with getting through the flare-ups (be they known like season changes or unknown) - it’s just “remember the big picture”. When symptoms hit and I feel like I’m flailing about wondering what happened or how I’m going to deal with being worse and feeling like it’s going to last forever and my life is really too stupid for words - I try to mentally step back and remember to look at everything in terms of years - or 6 months at a time. That way I remember that it’s not always so awful and desperate feeling - that there are times of low symptoms and maybe even a feeling of contentment at being low symptom. It helps to take the edge off the desperate feeling. I have to do that several times a day during the bad phases but it does help me.
I hope your doctor is able to help you with some answers, support and treatment.
Good words molly in a bad phase its so hard to see through it Im on week 11 of a bad phase really truly feel this is it ,its the longest I have ever had.
I dont even remember my baseline anymore I pray for the day their back x
I find spring/summer is worse for me as it seems to set off my allergies and that makes me more dizzy. I seem to be a bit better in the cold seasons alhough it’s never normal during any time of year
Donna, don’t think this is forever. It takes me ages and ages to improve after a big attack and I am talking like a year to see some improvement. Could you try upping your doses on your meds or at least one of them, most people need higher doses to get stable I think. I have just gone up to 35mg of nori and aiming to reach 40mg in the next few weeks. The 20mg of ami is really low, I know it was helping at that level before but maybe you need more now or you could increase the pizo instead? x
Em I just doubled the pitz last night I ideally would like to come off the ami and go on another SSRI I got on well with prozac years ago would like to try it again I think this is something I need to speak to the specialist about this month.
The one symptom I can not get rid of is this internal pulling feeling when I walk its horrible I have no control over it I think meds wont get rid of it Jem x
Donna, I have just been re-reading the Buchholz ‘Heal Your Headache’ book and he puts Prozac on the list of migraine trigger medications. He seems to always substitute Prozac for one of the tricyclics. He says Prozac stimulates headaches although he does say there may be exceptions. If you have had success with it before then might be worth a try. I guess it would depend on which doctor you see. I haven’t heard of Dr S prescribing it but I know he prefers nori and he seems to like Pizotifen, Lyrica, Gabapentin and sometimes Topamax or Propanolol. When are you seeing the neurologist? x
Really I never noticed migraines worsen on it before maybe in conjunction with something else like the pitz? I dont know i mean ive got a migraine today even though im taking all these meds im guessing its all hormones with me at the moment. Can you believe the pulling stopped earlier it just stopped just like that as I was getting in the car to pick the kids up the relief I felt when it stopped but now my head is pounding. I hate the pulling thing worse feeling Ive ever had tbh it will come back it stopped last week for two days then came back. I see the neuro the 28th X
