My story started last Nov (2014) when I went back on my birth control pills. I had been on this certain pill for 4 years previously and didn’t have any problems except my last year I started getting lots of headaches (sometimes almost every day) and then my acne became worse. I took a break for 5 months and then went back on them in November. Now this month of November was horrible for me. My boyfriend took a break from me, I had huge amounts of anxiety from my cystic acne breaking out all over and even a couple panic attacks. Actually that whole winter was super stressful as I had lots of financial problems and stress and also two bad car accidents.
But also I kept thinking the dizziness was a side effect of my birth control pills. The days after I went back on them I felt just super strange that night in the shower, as if I was about to faint or something. The morning I woke up I had a bad headache and felt intense lightheadedness or dizziness. That giddy almost buzzed or drugged up feeling. I thought my body had to be use to the pills again and stayed on them 3 weeks. At that point my giddy dizziness was nonstop and everyday. Sometimes it was scary to drive. My dr told me to get off the pills and he sent me to the hospital to get a catscan. I was perfectly fine after the cat scan and nothing showed up!
These feelings eventually got better but it took me from November to April for it to finally be gone. I’d say all of December, Jan and Feb was a horrible daze and also lots of headaches. I started getting a few normal days in March and it seemed to lift a bit when the weather got nicer. Then in April I went to LA for a week and my symptoms completely disappeared and stayed gone even when I came back to Michigan. I stayed in remission from this weird thing until November once again of this year! The only similarities I can find are the weather pattern and slight stress from my acne once again coming back in November of this year too. But overall I don’t have nearly the amount of stress I did last year. I am on no medications at the moment. My symptoms seem worse with very bright lights or fluorescent lights and I feel disorientated in large shopping stores like the mall and Kohls, Target, etc. I also have once again increased headaches in the winter. In the spring and summer I almost don’t get any headaches. Every now and then when it’s really bad I can also hear my pulse or blood vessels in my right ear. I don’t know if this is related or not.
I am just so heartbroken this came back at almost the exact same time of the year! I was in remission and 100% for like 6 straight months. I can only think this is MAV and maybe I get it seasonally? I do live in western Michigan where we have the cloudiest winters and lots of pressure change. An ER doctor gave me antivert when I went in this November and at least it did something! It made me less dizzy but also I could tell when I went to the mall there was still sensory overload when looking at lots of different items.
The one thing that seems to help is having a routine. Last winter when I worked part time I always felt better on the days I worked. I try to get up at the time time every day now. Today my alarm didn’t wake me up and I slept in and feel horrible now. One thing about this winter is it doesn’t seem AS severe as last winter but still pretty bad. I just don’t know how I could fully recover from this thing and then have it start all over again.
I just don’t know is this MAV? Does anyone else have anything weird like this at the same time every year? Is there any cure to this? Or do we stay on medicine our whole lives? I see my new general dr on jan 20 and I want to ask him for a beta blocker to see if it helps at all, I have no idea if he even knows what I’ll be talking about but I have to start somewhere.
I’m so sorry you’re experiencing this too. Yeah that sounds like MAV. Mine started during a time of intense stress too. It’s been pretty chronic since then but the only thing that’s helped a lot of getting off caffeine and dairy and possibly gluten - the Bulcholz book “Heal Your Headache” has a recommended diet for MAV/migraines. You might want to try nortriptyline or amitriptyline or topamax or another anti-epileptic, but in my experience I’ve had more immediate success with nortriptyline at 10mg - might go higher to see if that helps more when I have days of intense stimuli that aggravate the MAV. I recommend taking a look at this article and maybe bringing it to your dr. appointment: http://www.enttoday.org/article/migraine-associated-dizziness-is-elusive-to-diagnose/2/
Doctors usually call this anxiety in my experience unless they are neurologist who specialize in migraines, but the symptoms aren’t just anxiety…although they do cause anxiety for me. That article above mentions some helpful medicines (nort. is usually the most helpful one according to the article). Good luck with your appointment and things do get better when you get on a medicine that works for you - I’m OK with being on nort. long term because the side effects aren’t that bad for me. (I felt worse - more anxious/dizzy/headachy - the first week but it got much better after that.)
Has nort brought you into remission? I’ll definitely try and bring this article to my doctor.
This last week I had about 6 full days where I felt like 60% or better I’d say. My boyfriend and I took a trip to Kansas City where it was sunny the whole time and we walked a lot. I also really limited my caffeine and had no chocolate. The last couple nights though it’s gotten worse - I think maybe because I’ve gone back to caffeine for work and I also had 4 chocolate bon bons last night and today I feel miserable. Coincidence? Maybe. I’m definitely going to buy decaf coffee today and NO more chocolate. The weird thing is I don’t think I ever remember having a migraine. Just regular annoying headaches that happen at least once a week in the winter and a lot more frequently on birth control. I suppose it could of all started on birth control as migraine and headache is a big common side effect.
The bad thing is my derm has perscribed me accutane starting next month as my cystic acne is really starting to scar my face and she said it’s the only thing that will help at this point and you can’t be on any antidepressants while on accutane. I’ve read you can take a beta blocker while on it though. So I’m kind of stuck in a difficult spot. I also pray the accutane doesn’t make the dizziness worse. I’ve never really had any health issues at all until last year. Now I’m juggling two very depressing disorders. Some days it feels unbearable.
Have you tried limiting dairy intake to help with the acne? The only type of dairy that doesn’t make me break out is goat milk yogurt etc. - the other cow’s milk yogurt is full of hormones I think as it’s mass produced. Chocolate also tends to make me break out a bit more, as well as caffeine, and I think dairy triggers worse MAV symptoms for me - so perhaps there’s an added reason to cut those things! I drink soy milk instead of milk.
I think MAV is a bit different for everyone in terms of dietary triggers but the two medicines that seem best in terms of getting better are nortriptyline and topamax, but there are others that the article mentions as well as other people on this forum have used apparently. Sometimes mixtures of drugs works best.
It’s just a matter of which drug you can tolerate (and which one might be compatible with accutane if you want to go back on it). Topamax might be OK with it but I have no idea - it’s not an anti-depressant.
As for my situation, I think I’m going to need to go up to 30mg-40mg of nortriptyline to see full relief - I have about 70% of my symptoms cut by it but it seems to be wearing off a little bit.
I was able to actually go horseback riding twice already just on that dose and nothing else, which shows how helpful it is for me, but certain triggers still set me off (mainly overhead fluorescent lights).
I think your neurologist will have some good suggestions -I think nort. can have more immediate results but topamax just takes some more patience to see full results over a few months at the 50mg dose–some people need to go higher. You can also titrate upwards on nort faster - 10mg every week I think. Topamax you have to go really slowly but apparently it works super well for some people on this forum.
Thanks for all your replies. Maybe you can go up on nort and bring on full remission. Does your Dr want to keep you on this long term or eventually wean you off when you’re better?
Yes, I’ve had acne since I was 13 and I’ve tried every diet and supplement and medicine there is besides Accutane now. My derm said diet can help some with run of the mill acne but my cystic acne is too severe to just be helped by diet. Both my parents had cystic acne so I know there’s a genetic component for sure. I already don’t have that much dairy so I don’t think that’s a big trigger for me.
It seems promising as they seem to keep patients on meds for only 12 weeks until they’re better. Also is pizotifen a medicine in the US or just the UK?
Hey Anotherstar! Yeah, I hope that a higher dose of nort. will do the trick in higher stimuli environments like my workplace because of all the darned lights that make my nerves go haywire. I can work much better even at 10mg of it but over the course of the day, the MAV symptoms get worse under fluorescents. I think I’ll probably be on a med long-term unless I want to have kids in which case I guess I’d just have to bear the MAV symptoms for a while (I had already been unmedicated dealing with this issue for 2 1/2 years before a neurologist thought this might be migraine related so…) I saw that DailyMail article too! I think that drug is only in the UK but sometimes people’s MAV comes back after stopping a medication, that’s what I’ve heard from others. Some people can go on and off a med, most often I’ve read this about nortriptyline but not topamax. I guess if you titrate high enough on nort. it can recalibrate something and you can try to come off of it for a while to see if diet controls your MAV enough alone. I know that if I have any caffeine I have worse MAV (that includes chocolate) but nort makes me more sleepy so it’s kind of annoying that I can’t have coffee! Hope you feel better soon - I would suggest bringing some literature to your neurologist appointment about MAV but not being too pushy (that backfired against me in an early appointment)! Liv
What interests me about your case is that it seemed to start out as something seasonal. Is it still seasonal? Have you tried allergy medicine or talked to a doctor about allergies? Any type of congestion can make MAV symptoms worse, especially if the congestion gets to the inner ear. But, congestion and post-nasal drip can also be a symptom of migraines. It’s best to talk that out with your doctor. Good luck!
Maybe its wishful thinking but knowing last year that my body just naturally got out of the migraine loop seems hopeful right? This year already seems less severe than last year (knock on wood). I hope I can just reset things with a medication and be good to go. And I’ll be sure not to be too pushy when I see my Dr. I definitely noticed they don’t like it when you come in with your webmd diagnosis haha.
@ Jess09 hello! Yes actually I’ve given a lot of thought to the idea of allergies too. I do get some sneezes and runny nose in the winter and spring from being so cooped up in West Michigan. I usually pop a claritin or zyrtec and it gets rid of that but it has no effect on my dizziness, I also had that way before this MAV thing (if that’s what it is). The ER doctor I saw last month gave me some potent anti allergy meds as well but they didn’t do anything besides make me sleepy. Would you feel congested in the ear? Because I have zero ear symptoms. Also would congestion and allergies cause the photophobic symptoms and light sensitivity I have? But we shall see what my new doctor thinks.
Our weather here is so cloudy and dreary during my worst months I can only think that maybe it’s some trigger. I’ve always hated winter and I just seem a lot more happy in the summer. I wouldn’t go as far as seasonal affective disorder but maybe there is some chemical that isn’t 100% optimal for me during these months.
No, I don’t think congestion would cause the photo and light sensitivity. It most likely sounds like migraine, or some variant. I’m sorry to hear the allergy medicines don’t help your dizziness. My mom and aunt have allergies and sometimes get dizzy and if they take an allergy med their dizziness does away. But neither of them have MAV.
You can’t really feel if your inner ear(s) is(are) congested unless you have muffled sound or an ear infection, from my experience. Or pain in one or both ears. I had never had an ear infection in my life, woke up one day early October, had ear pain and couldn’t hear right for the first few hrs of the morning, and I knew right what it was and went straight to the doctor. The ear infection also wreaked havoc on my MAV. Not a fun week, and it took forever for the antibiotics to work. Actually every time I get a cold I end up getting either a sinus or ear infection these days, which all worsens the MAV symptoms. ugh.
My doctor explained it to me, that probably the body and the whole system was already on the way to MAV, but is able to compensate it. And then there is this one thing that gives the final push over the cliff. An infection, heavy emotional distress (death of a loved one, painful breakup, etc.) - in your case it was maybe the BC pills which certainly introduce a hormonal shift in your body. That might have pushed you over the cliff, but maybe it was pure coincidence.
You said you were fine for half a year and then it came back. Did you get on or off those BC pills during that time ? (or other hormonal BC such as patch, ring, etc.)
We are all looking for the pattern and trying to find out what it might be. I think it is right to trace any possible evidence down but one should be open and ready that it was just coincidence instead of clutching at straws and run down into a dead end.
Jess, I’m sorry to hear about these ear infections. Weirdly for me when I have a cold I feel like it’s not that horrible because I’m already feeling crummy lol.
@Frank183 Nope I was only on the birth control pills for three weeks when this all started in 2014. I kept thinking it was a side effect of the pills! Then it stayed far longer than any side effect could. I have still sworn off all birth control pills since then. My boyfriends mom also died from a blood clot from BC pills too so they’re quite evil to me now. I was on zero medications when this latest episode relapsed me. The only thing I can think of is that the weather changed (same time as last year, even the same week! spooky) and I started a new job - but this was a GOOD type of stress because I was excited and happy. I agree with you, I think we can drive ourselves crazy if we try and think of patterns that maybe just aren’t there. We have migraine brains that are just super sensitive to change - good or bad maybe.
Hey guys, So gabapentin has been helping a lot, but unfortunately I had a bit of a crash this afternoon after eating a nut bar and then a banana - I think it’s the high tyramine foods that cause the biggest problems for my migraine situation. Keep an eye on that maybe. I’m avoiding high tyramine foods from now on!! Liv
Sorry, I got it a bit wrong, as in not completely. What my doctor said, there is this one thing that gives your system the last push. And creates a permanent shift in your condition. However, if it isn’t this one thing by itself, it could have been anything. Just a little while later. Your body, your brain just was “ready for it” and it had to happen sooner or later. Hope you understand what I mean.
I for myself can certainly feel changes in weather and climate. Particular if it changes from high air pressure to low air pressure.
Slightliy off topic: I’ve known quite a number of women who are even on the pill when they are not in a relationship because without it they are experiencing mood swings, skin problems and painful periods.
But as you are very sensitive to changes I’d think that artificial hornons are most likely not good for you. So, if you found a way without hormons that suits you, it’s certainly the right thing.
That’s so crazy about a banana and nuts making you feel so bad. I still have yet to find any dietary triggers. I’ve been off caffeine all week but haven’t noticed a difference. Naturally I seem to get a couple good days and a couple bad days. Yesterday and the day before that I’d say I was 90% most of the day except when I went into Michaels and the fluorescent lights along with lots of tiny objects hanging up (beads and jewelry section) made it hard to concentrate on anything. So far the only trigger I can pinpoint seems to be when the weather gets cold and cloudy here. Maybe I should move to the Southwest lol.
@liv85 What happened to just increasing the Nort.? It seems from what I’ve read on here Gabapentin doesn’t have that great of a success rate with MAV patients. At least you can find relief when you’re not around bright lights. I hope you find relief soon!
@Frank183 yes I was initially just on birth control to control my acne and I was 100% for 3.5 years on it. I barely felt like I was on anything, it felt like a sugar pill. My last half year on it I had increased headaches so I decided it was time to take a break. And see before this whole MAV thing I thought I tolerated medications quite normally. For some reason my body just became intolerant to the birth control pill.
@anotherstar: did you go back on the same pill you used before against acne ? The anti androgyn pills are a lot more prone to heavy side effects than regular BC pills.
I remember some 20 years ago it was a common “trick” for high school / college students on a tight Budget to find a nice doctor would “diagnose” them with acne or hirsutism (even though not true) and prescribe an anti androgyn BC pill as a “medication” against it so that the health insurance would pay for it and they had free contraception.
Today however they rarely prescribe them any more and even the pharma companies producing them recommend not to take them as contraception only. They use them only if it is the only option helping against acne and then it’s like two birds killed with one stone.
So, you might be ok with regular pills. although I wouldn’t recommend trying it.
I was on Ortho Tri Cyclen which is one of the most common pills ever and apparently it’s well tolerated by most. And yes it was the same one, I’ve always been on.
Being a girl involved with birth control, I can say I had no problem getting a prescription for Yaz (an anti-androgen bc pill), although I chickened out and never took it, just stayed on my old Ortho Tri Cyclen. I know many of my friends who are on Yaz or Yasmin too. They still are in the top 10 birth control pills prescribed each year. I don’t know why considering the side effects.
And yes if you see my first posts my acne has been horrible well really my whole life but especially now that I’m not on birth control.
A bit off topic now: Ortho Tri Cyclen and Yaz/Yasmin have only a marginal anti androgyn effect and are only marginally helpful against acne.Besides that Yaz/Yasmin belong to the “next generation” pills that are currently under investigation as a couple of young women have died from that. Arguably though.
As far as I understand it (I have a leedle bit of a chemistry Background) they wanted to replace the estrogene used in the old pills as they feared it might be related to breast cancer and also could have weight gain as a side effect. With all the good intentions they might have gotten it wrong. Over here many women want to go back to the “old” ones, but it’s not that easy as the patents of the old ones are expired and there are a lot of cheap generics available. So the pharma companies are trying to push the new ones through the doctors prescribing them …
Another side note: some of the medications against migraine such as Topmax can reduce the efficiency of BC pills and can lead to an unwanted pregnancy.
So good news is that my new GP seemed very knowledgeable about MAV. He said his wife even has some variant of it and he said around 20% of his migraine patients consists of MAV. He is super nice and understanding and let me talk to him as long as I needed. He said mine didn’t sound exactly like his other patients as I seem to have symtoms 24/7 when I’m in migraine brain, but I don’t feel too weird as many people on here also have that.
Now the bad news. He prescribed me Propranolol which sent me to the moon. Oh my god, it makes me feel SO weird. My body feels physically dizzy on it instead of it just kind of being in my head and it makes me yawn and almost fall asleep all day, I’m so damn fatigued. I’m quite literally a zombie on this crap. I know it can make you feel worse before better but there is no way I can function at this level. If I stuck it out I’d be off work for at least a month which I absolutely cannot do. I took 60 mg before bed but the fatigue is just unbearable. I’ve called his office and asked that it be changed to verapamil. I’m so sick of feeling this shit I just want to be normal again.
I’m having excellent results (not too fatigued once I got used to it) at 200mg of gabapentin 3x a day. I take it at 8am, 2pm, and a bit before bedtime around 10am. If I go higher, I get oddly dizzier and very out of it, like I’m stoned or something, so I am staying at this dose. I still get some symptoms if I have too much caffeine but 1 cup of coffee seems okay on this med. Fluorescent light sometimes also create some MAV symptoms to intensify but it’s manageable. I have realized this is something that I probably will have longterm and I am able to cope with the symptoms on this med at this dose because the side effects are not bad (just some fatigue, but it relaxes me as well). I sleep super well on it. I recommend the med if propranolol is too sedating.
Liv that is wonderful! I take back what I said earlier about gabapentin then
So would you say you’re close to 100% as long as you’re not under direct fluorescent lights? I will mention this one to my doctor when I talk to him next.
and you can’t be on any antidepressants while on accutane. I’ve read you can take a beta blocker while on it though. So I’m kind of stuck in a difficult spot. I also pray the accutane doesn’t make the dizziness worse. I’ve never really had any health issues at all until last year. Now I’m juggling two very depressing disorders. Some days it feels unbearable.