Well iāll just keep you up to speed with my situationā¦ for a couple of years on and off Ive noticed from time to time that things were not quite right. Last september I had a really bad migraine with auras at work (1st id ever had) and ever since then ive had headaches and a general unbalanced feeling- like feeling drunk but with out the fun! or walking on a ship on hectic waters! not funā¦anyway between september and christmas the balance got very bad- couldnt walk a matter of metres without needing someone to hold onto to walk.
Initially got diagnosed by two GPās with labyrinthitisā¦none of the medications worked- Went to a ENT specialist, had mri scans, ear function, diabetes, blood pressure the lot- all absolutely normal. Got finally diagnosed with MAV (which makes sense with the link with the migraines)- got given Pizotifen (1mg) - every since ive seen a MARKED improvement could go back to work (had to take a month of) and basically get on with my life (about 95% normal) apart from one annoying thingā¦a few days before my period i get the unbalanced feeling and through out the periodā¦
I have only been on pizotifen since the start of january so donāt know if they havent taken affect or if its truely down to the hormones? Can anything be done to help during this time? I dont really want to be feeling like this every month. I hear the pill is an absolute no no with MAVā¦surely something can help?
I have been told by my doctor that MAV acts up days before, the week of, and alittle after oneās period. I know my symptoms flare up a few days before up until a few days after my period. I am on Verapamil. I am not happy with feeling that way so many days out of the month so I am seeing an endocronologist about the hormone issue in April. It has gotten somewhat better on the Verapamil, but I donāt feel as good as I should. I too, have had all those tests. Iāll keep you guys up to date on anything new I find out. For right now, I kind of just deal with it or at least try to. I almost always have a ājust not right feelingā. I always feel alittle āoffā. I feel for you. This is definitely a disorder that interferes with oneās life.
Iāll be curious to hear more about this, as I currently donāt know if the monthly affects my MAV or not. Iāve only had issues with MAV since August and was doing well until January when it kicked in again and I have started a new med (a tricyclic antidepressant). Now, interestingly, this week I have had more MAV symptoms and it is my monthly time, so I guess i just need to see if it happens every month. I can say that normally my monthly kicks my a$$ anyway with back pain, regular headache, fatigue, emotional rollercoaster, etc., so maybe just already feeling wacked out can make the MAV feel worse?
And what was the statement about taking birthcontrol - a āno-noā for those with MAV? I thought if you were taking birth control it would HELP with the hormone issues?
I think there is a definite link between hormones and MAV. There is lots of research that show the link between hormones and vertigo- the drop in eostrogen I think is the trigger.
I heard that the pill can actually make things worse (especially if you have migraines with auras like I do)- but I hear some other types of birth control can help. Just need to find out which one!
AHHH- the monthly dread!!! :shock: Usually Im fine- rarely get pain- sometimes a bit emotional but can completely deal with it- now its unbearable! Such a shame as most of the time I feel really good compared to what I used to feel like!!
Hi
I also get the same - my period really affects my MAV symptoms and I get a rush of symptoms a few days before my period starts. Itās very disconcerting. Itās the worst trigger that I canāt control, and I canāt take birth control pills because it makes my migraines worse so that is out! I have read on an epilepsy board about controlling symptoms using progesterogerone taken before a period but I havenāt heard of this for migraine?
Tesss
This is an interesting discussionā¦
I do take birth control pillsā¦Loestrin 24, a low estrogen pill. For me, it REALLY helped with the bad bad headaches that I was getting. Not just the headaches around my period (which were awfulā¦really painful for like 10 straight days), it also seemed to help with my headaches in general. If I do get a headache now, it is managable and usually goes away within 24 hours. The MAV symptoms have been the same for me, both on and off the pill.
Thats good youāve found something to help the headaches. when you say mav symptoms are same on and off the pill what symptoms are you refering to. My problems are the unbalanced feeling I haveā¦so are you saying these are the same on or off the pill?
Yes, that is likely what she is saying. I too am on that, but a different dose. While it is technically birth control, I got on because my physical PMS and then monthly symptoms were horrid - cramps, headache, backache, etc. This bc pill helps with these; one I tried prior gave me more regular headaches. It has NOT helped with anything related to the MAV; all my symptoms of MAV are the same (or possibly worse) during my monthly while on the pill. My MAV symptoms include off balance/woozy, light sensitivity and snowiness, fatigue, and mental fog/cognitive issues.
Bcrelief,
You are right on the money. My regular MAV symptoms are an off-balance, woozy, foggy, out-of-it feelingā¦which does seem to pick up around my period. When I was on a different pill, my headaches were almost everyday and the headaches during my period were horrible. I actually tried going off the pill and it actually made everything worse. This particular birth control pill has helped control the headachesā¦I think and my PMS symtoms are much more tolerable.
Hormones are a primary trigger for me. I definitely get worse right before the start of my period and it lasts until a few days after. I have bad PMS, cramps, etc., too. I wonder if that is common for woman with migraine. The main reason against using birth control pills if you are a migraineur, especially one with aura symptoms, is the increased risk of stroke. There is a higher risk of stroke in both women with migraine aura symptoms and women on birth control. Combining the two increases the risk already present. I believe it may also be higher if you are in your mid-thirties or older. My first neurologist advised against birth control pills and hormone replacement therapy when the time comes to consider that option. Pretty discouraging, huh!
I am anxiously waiting to see what the endocrinologist has to say to Nance!
As for ear fullness, that is a common MAV symptom. I had it in the beginning when I was really sick, but it cleared up after a few months.
Starting up a conversation in this thread in the hopes someone can first reassure me and secondly whether anyone has found a manageable solution.
I have been doing generally ok since my major episode (mav triggered by BPPV) early Octoberā¦ which went through all of November into December. I am on 1.5mg pizo and that has helped a lot. I was having the odd day of 95% with some dizziness and general fuzzy head.
BUT! This week, Iāve been having more dizziness ā¦ and this morning, 2 days into my period, I woke up absolutely horribly. Swirly, nauseous, dizzy, light sensitive, and itās my daughters 9th birthday!! Iāve been in bed all day.
Before this all started I got monthly migraines - so Iām not surprised. I am hoping this is not a major relapse. I know all too soon to tell, but Iām your experiences, can this just be a couple of days off and Iāll pick back up??
Iām always worse at the start and weirdly also at the end of my period. I had a really painful migraine and worsening of symptoms after being on pizotifen for a few months during a period and it threw me as I needed to take triptans to cope. Things did settle and I continued on with my treatment plan. I hope things improve for you in the next day or so. IME symptoms get worse when āeventsā are coming up. Hope your daughter enjoyed her birthday. It takes a while for the meds to dampen things down enough and hormones can really disrupt things. Iām perimenopausal so my periods are becoming more erratic. If I have a bad day or two Iām not surprised when a period shows up.
If the symptoms persist you still have wiggle room to increase the pizotifen and/or add in something else (in consultation with your sepcialist of course)
Oh thanks @sputnik2, glad someone else is also in my shoes. Iāve woken with a pain headache today, borderline bearable. Iāve got a couple of questions for you about abortives. I read on here that triptans donāt really work for vestibular migraines, but I tried one anyway. I found that, along with going to bed in a dark room actually helped it yesterday.
Do you take abortive meds around period time?
Also, I see you are also on pizo. Iām finding it ok. How long have you been on it and are you planning on weaning off? My neuro is already taking weaning in June! Iām not so sure!
Lastly (and maybe too personal, forgive me), I wanted to get an insight into a perimenapausal life. Do periods become more frequent or less so? What I really mean is, is there less migraines but more unpredictable or more? Ahhh Iām hoping Iām one of those people who say that once menopause came, my migraines went away!
Hormones are wicked and I envy men who donāt have to deal with them!!
Morning, Iām in the same boat with hormones, they cause me mayhem. In December, I had a hard month which is disappointing as I had 3 decent months. The reason was I had 2 periods in one month due to a short cycle. So despite been on 2 oral preventatives and ajovy monthly injection, the hormones kicked my ass and reminded me whoās in charge.
In terms of abortive, my neuro had me take forvex triptan which is used specially for migrane during periods. I found it excellent and took it preventatively from day 1 to day 5 of my cycle to reduce occurrence and severity of headache pain. Iin fact, he tell me if I got a sign even the day before period to take it. I took one twice per day for 5 days.
Thanks to ajovy I donāt need to use triptan during period but if pain strikes badly, Iāve found this abortive very good.
I feel your pain, Iām 4 years into this now and found meds and trialing combos very good for me. Keep looking into meds and perhaps add in or increase your pitz and look into forvex too.
Well done on getting through your daughters bday, hope you all had a lovely day.
I too get problems with my hormones. Thankfully I donāt get pain with my vestibular migraines but hormones really trigger nausea, a horrible swimmy feeling, dizziness, exhaustion, brain fog - all the usuals. My periods are irregular and I can always tell when itās going to be a bad one by the level of vestibular symptoms. Totally sympathise! Magnesium Glycinate has helped greatly and I take amitriptyline, but if itās a bad month, not much helps other than rest to be honest. I wish more doctors would take this seriously!
hi all, I have been away from the site for a while, but wanted to share a recent experience. I decided in early december to start contraception to see if it would help with the migraine I get during my period. So I tried for two weeks a combined pill (low estrogen and progestine), and felt like dying. Itchy, bad mood, headache, and horrible anxiety. So I decided to stop and went back to normal within 48 hours. I was expecting that, since I messed with my natural cycle, I was going to be hit with a horrible migraine at some point. And so I was right. 32 days after the first day I took the contraception pill, I got my period and felt so unwell, like postpartum craziness all over again. Fatigue, dizziness, headache, blurred vision, noise intolerance, and the worst, a rush of anxiety, just my body totally unseasy. Awful. I had to use a long acting triptan (naratriptan, which is used for menstrual migraines, might be the same @nin Elaine mentioned above) and took 1/4 of a benzo (clonazepam, a quarter of 0.5 mg, I had actually taken it 3 times this week now, which I have never ever done before) because the dizziness was intolerable but the worse was the anxiety (which of course makes me wonder if the dizziness triggered the anxiety but I had the anxiety really in control. I regret so much trying the contraception in the first place, it feels like I huge setback to me. I am still dealing with the anxiety rushes, I think the migraine has calmed, but I am left completely uneasy, which had not happened since 3 years ago when this all started. I am seeing my PCP today, to see if she recommends something. Anyway, I thought it might contribute to the topic of hormones here. I am 40, so still have menopause ahead of meā¦ Sending hormonal balance thoughts to you all.
I hear the pill is an absolute no no with MAVā¦surely something can help?
