Hi Everyone, I’m new to the forum and would like to know if anyone experiences constant headaches 24/7. I’ve had a headache now since late January. Their have been short periods of no headache, sometimes a day sometimes a few hours. I have been diagnosed with VN in December 2012.
Thanks,
Brookie
Hi
I don’t have a 24/7 headache, my main symptom is feeling off balance/dizzy all the time to varying degrees. Do you feel dizzy along with the headache being as you were diagnosed with VN? x
Can i ask whats vn please
Vestibular Neuritis
Constant headaches for me.
I used to have daily headaches but pizotifen stopped those completely. didn’t help with the dizzies but one less thing is good!!
Krystal
I’m one of those fortunate people who managed to get rid of the headaches with Dothep - it did take a while though and did reduce them from daily to between 6 - 9 a month and not so intense. It wasn’t till I got to 100mg that I actually had one clear month. Because I then had a lot of stress moving house, they came back and Dr Granot advised pushing up to 125mg which I stayed on for a few months before reducing down to 100mg where I’ve stayed for about five months with no headaches, except for ‘normal’ type ones while trialling Topamax at the ‘start up’ and they’ve gone now.
I found the higher dose of Dothep caused bad constipation and Dr Granot recommended taking Osmolax (a powder available from the chemist) which is excellent with no side-effects.
I hope the Dothep works for you - the daily migraine headaches are so debilitating.
Thanks Barb, yeah you and HelenC are two that I’ve found on here that have had success with Dothep. I’m always saying if Barb can do it. I’m only on 35mg at the moment and the constipation is starting. I will check the Osmolax out, thanks for the suggestion. And thank you for the support and well wishes, I can’t wait for all this to be behind me.
Hopefully now you’ve reached 100mg of Topamax, you’ll feel a lot better and no more wonkies after long car rides.
I was diagnosed with mav 6 weeks ago, have had 24/7 vertigo since sept 2009,
Had a relapse in oct 2012 and in jan 2013 have had chronic daily migraine, thats when my diagnoses changed from vn to mav, mainly bedridden from the constant head pain! This all began late in my first pregnancy! Havent found a preventative med that works yet!
Yes I suffer the exact same thing. For 7 months it was a constant daily headache, ibuprofen took the edge off. But now since experimenting with preventative medications its now constant migraine headaches (with nausea).
On propanolol at the moment, I find this helps with head pain but certainly hasn’t prevented migraines from occurring. The most pain I get is in and around my eyes, does anyone else suffer with this ?
Yes, severe pain behind the eyes but i also get loads of pain at the crown of my head! Topamax knocked out the migraines but the side affects were too extreme, doc forced me to
Come off! Piz took the edge off, so far nori has done nothing but im hoping when i up the dose it will start kicking in! With two little kids having a daily migraine is extremely tough, i would prefer to just go back to the days i just had vertigo and vision problems without the migraines, thats something i thought i would never say haha
Hi everyone,
I can relate to the pain around the eyes, especially when I move my eyes from side to side. I get the pain in the forehead too and on the top of my head. Once the headaches start they go all day and night.
I did start with VN, then dx with MAV about four months later. I have seen so many people on here that have had VN first then the headaches start. I also have 24/7 dizziness.
I have been trialling some preventative meds. Started with Ami which is when my eye symptoms worsened? I tried Topamax and this helped with the headaches but as Becky2013 said, the side effects were terrible so I stopped. I am now just starting Propranolol & really hoping for the best!!
Becky2013; I see your symptoms started late in pregnancy for you. Mine started three months after my second baby was born. Maybe a connection?
Lovely to hear from you all xx
Yes, seems to be a connection between babies and triggering this illness, my second major relapse was when i was weaning my second baby off breastfeeding! Mine is highly ruled by my hormones so pregnancy and breastfeeding have played massive roles in my mav!
I can relate to what everyone writes! I would love to just be able to get back into housework and playing with my kids, but at the moment just waiting on these meds to kick in! Nori has worked to stop my rocking, so atleast one of my symptoms is being solved my the meds!
If i turn my eyes from side to side too hard or strain them i just seeing stars for a few seconds aswel as feel a lot of pain!
Being diagnosed with vn for 3.5 years frustrated me because i knew i was suffering from something that was active and developing! I now have to forget those 3.5 years and start from when i was newly do with mav by dr waterston!
So nice to hear from people who know what I feel from day to day, even though i have the most caring partner there are still days he just doesn’t get why i cant do something he has planned!
Hi Becky2013,
I am so happy to hear from you too! It is not nice to think more people have this, but it is so nice to hear that we are not alone. I have small kids too and it is so hard when you feel rotten and they want to play with you. I also find it really hard to express how I feel because it is hard to describe this constant feeling of dizziness, headaches, nausea, vision issues to someone who does not have it. I have heard people here say, “just because I look fine” other assume you are ok and that could not be further from the truth sometimes.
I too was dx with VN and was improving then bang the MAV hit out of nowhere and the headaches started. It has been so difficult, but gee it’s nice to find others who can understand the hardships and I really felt like you were describing me in your post! I just hope we can get to a point where we can control this.
Brookie xx
I completely get that! I knew a young woman who was sick from chronic fatigue and vertigo, i knew how sick she was but when i saw her i couldnt believe how well she looked! I kept just thinking this is how people see me! That this illness is often invisible! Now when i say i have mav, i get the reply oh i have migraines too and then i just stop talking haha its just too hard to explain! Yes we sound so similar, actually made me tear up when talking about the kids! My son told me the other days his headaches dont make him sick so why do mummy’s make her sick? I said its because his a very special little boy, well he looked at me and said but your special too mum, you truely are special! I cried, because i just didnt know how else i could explain to a three year old why i cant do things!
Yes we will get this under control, it just takes time and the right meds! How much control we don’t know but all i know is that it has to get better then this!!! Xox
Hi Brookie, Beckie,
I had he same think… Was dx with labyrinthitis in march last year, I fully (or so I thought) recovered in may and thought that was end of it.
It returned on oct last year, along with daily headaches. It has now progressed to daily migraine and all the lovely things that come with it.
The hardest battle is with yourself at times, just trying to remain positive when all you really want to do is sit in a dark and quiet room somewhere. It’s difficult with a chronic illness anyway but when you add a balance disorder into the mix (which triggers anxiety) it’s a real tough nut to crack.
Keep reading those success stories, they’ll be a med somewhere that unlocks the door for us. Good luck with your meds, please keep me posted in your progress.
Dean
Hi Dean & Beckie,
Great to hear from you both. My kids keep me going I know that for sure 
Beckie I loved your story about your son. So beautiful x
Thanks for the positive message Dean. I think it helps so much to hear from others : ) I agree with you that the biggest battle can be with ourselves sometimes because we tend to look ok on the outside and we know we don’t feel well it is hard to remain positive. My mum has Menieres and even our close family does not understand what she has experienced for many years. I think migraine is bad enough but the dizziness too, it is hard to talk to people about because most can only try to understand the migraine element but not the other symptoms we have in combination. I too usually don’t say anything because people don’t get it. Of course until I talk to you guys, then it’s really comforting and so nice to have friends who can relate
Do you guys have trouble with your eyes? I cannot focus well anymore and my eyes are in constant movement. Plus floaters and blurred vision too??
Brookie x
Yeah i have blurred vision, vision where if i look at something like my clock and look away i still see it for a few seconds, i get blinded by any form of light! When i look at my own teeth in the mirror i have double vision ahaha heaps of floatys squiggly lines and stars, i have often have blind spots! My Vision is pretty terrible but i know there are no issues with my eyes! I have no depth perception, like when i look at a wall i cant tell where it begins until i put my hand up against it!
So nice to hear from you both and keep you guys up to date with my progress! X
Yeah i have blurred vision, vision where if i look at something like my clock and look away i still see it for a few seconds, i get blinded by any form of light! When i look at my own teeth in the mirror i have double vision ahaha heaps of floatys squiggly lines and stars, i have often have blind spots! My Vision is pretty terrible but i know there are no issues with my eyes! I have no depth perception, like when i look at a wall i cant tell where it begins until i put my hand up against it!
So nice to hear from you both and keep you guys up to date with my progress! X
Yes I suffer with blurry vision and what feels like constant strained eyes. The floaters and other stuff in the visual field is also very distracting. I have the same issue with light too, I think many people do… I’ve had that from the beginning but since the migraine headaches started I now have problems with sound too, which is a shame as I love music.
That’s interesting you mention about your mum having menieres as my dad does too. His condition had improved on its own over time and doesn’t have the tinnitus anymore. He doesn’t mention it these days - there must be a connection there.
Do either of you have problems with your ears ? Ringing, fullness etc ? Also the feeling that your living in a bubble - things don’t look quite real.
Didn’t mention in my last but like you both I tried topamax but suffered badly with side effects. It definitely numbed the headaches but I was effectively brain dead on it and it made me very nauseous.