Haven’t been on in a while (sorry!)
My hayfever started a week ago now (tree pollen) I’ve been so crap this month every year April/may I get worse again. My left ear is full and blocked when that comes back I know I’m going to feel bad again tinnitus is awful.
I actually think something is wrong with my ear I think I have MAV but I think I have menieres aswell as I can actually feel my ear full with fluid I think I need to see an ENT again as this is maddening I don’t buy that migraine would block my ear like this and make me fall to one side again.
It’s like an internal pull dragging feeling like gravity it’s not as bad as last year but it’s back and makes me just want to scream and cry fighting this feeling.
Getting out of bed just not wanting the crap day to start again and only felt bad for a week and already mentally get down again I want to cut my ear off my head
Sorry for the Moan but Is this s***t ever gonna get better
Donna I definitely have a link with hayfever and MAV going worse. I have gone on about it since the beginning but have not heard of anyone else saying the same thing. I found out that high histamine levels in the brain can be part of causing migraine and many hayfever sufferers also have the migraine gene. Also most of the foods on the migraine diet to avoid are high histamine foods.
I can’t take antihistamines anymore because they seem to make me worse. This all started for me 4 years ago in April 2009 when I was suffering from hayfever and my big relapse last summer also coincided with me suffering bad hayfever. It’s safe to say I am dreading the hayfever season this year. It hasn’t been too bad yet because the weather has been so cold so pollen is low but I did go for a walk the other day and noticed that I felt a bit more swirly headed after. I am sure hayfever makes this so much worse but I just don’t know what to do about it! xx
Same for me also. And like you Jem I think the colder weather has postponed things a bit. But I’m feeling it now alright. You’re definitely not on your own with this one!
It’s every year Jem without fail I hate this Jem how can we live life feeling this crap all the time !
I really feel at my witts end today
Do you get ear symptoms? Im considering seeing an ENT again get retested see if I’ve lost any hearing at all. I’m not allergic to grass pollen thank God just tree pollen which goes end of May x
what about trying allergy shots? has anyone done this?
Glad to know I’m not alone with this but sorry others are suffering.
Donna, I don’t know what we can do. Does anyone else take antihistamines? I used to and they helped a bit but that was pre-MAV. My MAV big bang coincided with taking antihistamines and I was convinced they had some part to play in all this so I just don’t dare take them again. Then last summer I tried an antihistamine nasal spray and I just went downhill from there! I don’t seem to get any extra ear symptoms with the hayfever Donna but I do generally have these crunching sounds in my ears when I move my jaw and I also get a pulsing feeling in my left ear in response to certain sounds or if I talk for a long period of time. This happens intermittently at any time of the year and I read it could be something called tensor tympani syndrome??? What ear symptoms do you get? Does it start along with the hayfever? Do you feel dizzier?
I am worse with tree pollen but all of it affects me I think. Bad news is I read an article in the paper today that said because of the cold spring, hayfever sufferers will have the worst time since the 1960’s because we will have a double whammy of pollen by June! It sounds awful. I think a similar thing happened to me last year because I had no hayfever up until June then it went crazy and I got dizzier and dizzier. In the northwest, where I live, pollen is low right now so it isn’t too bad but in the midlands and the south it is medium or high so if you live there then that is why is it bad now I guess.
Brenda do you take anything for your hayfever?
Sarah, allergy shots sound like a possibility but would want to know how other MAV sufferers fared with them first…
Short of wearing an oxygen mask or not leaving the house all summer I don’t know what is best
— Begin quote from “Jem”
Brenda do you take anything for your hayfever?
— End quote
No, nothing really helps and I really don’t get on with any type of meds at all. But if I’m really desperate I’ll take some ‘Benadryl allergy’ oral syrup. It’s very mild, really for children over 2 and the adult dosage is the same as for 12 year olds and above. Sometimes it seems to help, at others not at all. I found out about it on a migraine site ages ago, thought it very odd but gave it a go. It was actually recommended by someone on there who was extremely med sensitive for relief of dizziness would you believe! So I thought ‘kill two birds with one stone’!
Doesn’t Pitzotifen have histamine in it or is it antihistamine? It’s one of those two so not sure how I would fare on an antihistamine. Do you think it caused your big relapse then last year?? I hope it was just coincidence and I’m in the midlands Jem hence why it’s bad.
My ear is blocked totally blocked it hisses so loud my dizziness is worse once my ear starts its always worse I’ve been given the email for a menieres disease specialist in the uk apparently he’s really good I’m going to ask him tell him my symptoms.
My ears started at the start of that huge relapse sept and I just got worse every day just so pissed off living with this.
I’m going to see if they will do the tests again I really want to make sure it’s not my ears unless I have both going on which is common.
How u doing ? X
I’ve just looked it up and you’re right Blondie. Pizotifen belongs to a group of medicines called antihistamines or antiserotonin agents. I never knew that it was an antihistamine. I was pretty green about meds when I took Pizotifen some years ago. I wonder if that’s why I felt so rough on it? Interesting.
Oh really, well that probably means I wouldn’t do well on pizotifen then as antihistamines seem to make this worse for some reason.
I do think the ears are all connected to this Donna. When the ears go worse it usually means everything is worse. I hope it was coincidence about the hayfever because I have a horrible feeling it might go worse every year for me which is just awful. I haven’t been too bad but just really worried about it going worse again. Why do you think it could be menieres, do you have hearing loss? Worth checking but it’s unlikely you have that and MAV I would have thought. Hope not anyway. I just wish they did more research into all this.
I did ask Dr S about hayfever at my appt last year and he just said it is like having a cold, ie it makes you feel worse. So not really much help x
This thread is so timely…I went to the allergist two weeks ago to be tested. She tested me for the 32 most common allergies–I had a reaction to dust mites, german cockroaches and pigweed. The funny thing is, when I walk outside, I feel like I have an allergy response (itchy eyes, runny nose.) However, those three things are not where I walk. She gave me two nasal sprays to try for a month and then go back to see her. I haven’t tried them yet because I am hesitant to introduce something “new” into the mix as I am trying to figure out my triggers.
On the one hand, if some of my headaches are due to allergies–it would be helpful. On the other–the sprays could cause a headache. I just wish one thing with this was black and white!! Always so many things to contemplate.
Has anyone used the Zenecort spray?
swirlgirl, just watch out with the nasal sprays as Dr Silver says that steroid based nasal sprays can be quite a bad migraine trigger x
Thanks for the heads up, I wasn’t aware of that. I think I will wait unti after my next dizzy doctore appt!
Yeah Brenda probably why you felt worse then so that med off the list for you and Jem
I don’t know I do think my ear is shot I was having probs with it before this all started in 2009 I’ve spoke to a few people who have MD and I share symptoms s few of them did say MD and MAV are closely linked and if you get one your more likely to get the other. One woman I spoke to was told she had MAV for a few years but it progressed and diagnosis got changed to MD as she started getting low frequency hearing loss.
I could have a bit of both I think my left ear is damaged I can feel the fluid build up too. In 2011 In April my ear went totally deaf and I had severe vertigo for about 12 hours with tinnitus more like menieres than MAV.
Want to explore every avenue going to mail this guy tell him everything see what he says.
I still think I have MAV but maybe something else to I don’t know. Im sliding down again just praying it burns itself out soon this relapse it’s so scary x
Oh right, that doesn’t sound good Donna. I haven’t had any hearing loss and only very short occasional bits of tinnitus. Definitely worth getting it checked out as sounds like you could have more going on. I do believe hayfever can really affect this too so it could be that. I just wish there was more we could do about it. I see Dr S next week so will let you know if he says anything about this hayfever/allergies thing x
I suffer badly with hay fever and sinus. I have been on pizotifen now for 3 and a half weeks. I also take a Nasonex spray when I am blocked up. I stopped taking the Nasonex when I was 1st diagnosed with VN 12 mths ago but my neurologist who diagnosed me with MAV a month ago told me to resume it as well as the putting me on the pizotifen. I have seen an incredible improvement. Walked into a supermarket for the 1st time in a year without any symptoms.
Mid May it always hits. Ever since MAV went chronic the hay fever sets in. Slap back middle of the month and I wake up with the stuffed up nose, a behind-the-eyes bog standard headache (not migraine) and that swimmy, swirly head which is quite different from the MAV head motion type head sensations. And this year will be bad. I have an enormous field of oil seed rape right outside my back door. Acres and acres of bright yellow flowers so wide it colours the sky. And the flowers stay open for weeks.
The relief of rain, heavy rain yesterday pm and overnight this morning I was fine until the sun came out strongly at 11.00am. Then symptoms flooded in in a instant and the off balance feelings started. Roll on supper time.
How are you feeling by now? You okay? I love when its raining, it has a suiting feeling but, I don’t want to go outside and be wet.
I don’t dislike rain. Theory is it washes the pollen away. The hayfever is not causing problems currently. Presumably due to recent heavy rain, keeping windows closed (something I hate to do but have to do from necessity) and I am thinking there’s a possibility a recent increase in medication may just be reducing my reaction to the excessive pollen still about. The one certainty in all this is that the pollen hasn’t gone away. It’s still present in force.