Just looking to hear from people about their everyday experiences with this horrible condition.
I feel unwell every single day and find it hard to believe it all stems from this. I wake up in the morning and feel ok and then as soon as I get to work it all starts, extreme head pressure, eyes squinting from the pressure, feeling drunk and off balance, overwhelmed, fatigued and just generally really unwell. I struggle all day and then when I get home, I lie down or have a bath and the symptoms ease off a bit, although never totally go. I have a somewhat enjoyable evening, watching tv, or if feeling good, going out for meals, drinks, cinema etc. But then it all starts again the next day!
I am still under investigation by various doctors but have so far had a diagnosis of BPPV (confirmed by dix hallpike with nystagmus), unilateral labyrinthe hypofunction (they aren’t sure which ear as I have turned both left and right on the unterberger test, but i do have a slight left sided high frequency hearing loss which was detected on a hearing test) and more recently vestibular migraines has been suggested. I have just started Propranolol (on day 16) but no improvements so far.
I’m just curious if anyone out there feels this rubbish everyday, I know it is a stupid question as I’m sure the answer is yes but does anyone feel similar to how I have described above?
Hi Sarbear, sorry, bit late on replying to this, but haven’t got used to the new forum.
I can identify with how you feel every day. They diagnosed me with M.E. as well as Vestibular Migraine. Either way, I suffer all the same that you have mentioned, just feel unwell and struggle through to have any sort of a life. This has been going on now for over 25 years so this has become my life.
I haven’t let this beat me, have had holidays and some social activities, but whereas for those around me, its easy, for me its generally a struggle.
Not sure I can give any advice. I never got on well with many of the preventatives, too many side effects.
When I am really dizzy and wanting to go out, for instance, I was doing a singing performance tonight and dizzy before it, I take very small amounts of painkillers and eat something, it generally gets me through for a short time.
I think that is the best way to describe this illness, is being constantly overwhelmed.
Thanks for your reply and I’m sorry you have had such a hard time and are still struggling.
For anyone who reads this post, I don’t go back on anything I said in my first post as that is exactly how I felt, but fortunately things have improved since then. I had an official diagnosis of Vestibular Migraines and have been on the diet, medication and lifestyle changes for 3 weeks so far. I’m pleased to say my symptoms have reduced already so I hope it continues to go that way.
There are not many success stories on here and I am by no means one yet but I wanted to put this on here to show things can improve.
This site was and still is a great help to me so thank you. x
Hi Sarbear, glad to hear your symptoms are improving, is that all of them? Is the fatigue better as well?
How much propanalol are you taking a day?
I did use propanalol but couldn’t get above 40mg without insomnia and loose bowels.
The symptoms I have are as described in my first post, so constant off balance feeling, drunken feeling, head pressure, eye pressure, overwhelmed feeling, visual vertigo, false movement and all of this would make me fatigued.
I am not on propranolol anymore, my Dr switched me to Pregabalin. I have been on it for 4 weeks and all good so far. Propranolol gave me insomnia too, but pregabalin is the opposite, deep sleep everynight.
The fatigue is better due to sleeping better and from the slight reduction in symptoms.
how are you feeling? I hope you are still improving! Can you give us an update - what has worked for you so far? Any ups and downs or have things been smooth? I was seeing some improvement on 25 mg of Nortriptyline but since going up to 30 mg two weeks ago I have had headaches and worsening sx so I’ll step down.
Yes still improving. Few ups and downs, not exactly sure what caused the downs, still trying to figure that out as could be a multitude of things. I’m just enjoying not thinking about it 24/7, that has been the biggest plus so far for me!
Definitely nowhere near 100% though, but am happy with the progress I have made as it has only been a short time.
Its surprising that just 5mg has caused such a change? could it be something else causing the headaches - something diet related maybe?
thanks for responding. I’m really happy about your progress. Can you tell me how much you stick to Dr. S.'s diet? Do you think the diet plays a huge role?
I have been on the diet since mid-November. I didn’t identify any clear triggers which made me be a little lax about the diet. So recently I’ve been cheating - not in big amounts but in little ones every day. One day I’ll have a small piece of mozzarella cheese, the next day half a slice of pizza, the next a small cup of vanilla ice cream, etc… Do you think this might have had a cumulative effect?
Please let me know your thoughts on the diet, especially in regards to if you have not identified food triggers but still found that sticking to it helps…
What makes me think it’s the med upping that made me so much worse in the last week is that normally when I have a “down” day/days, I get dizzier, not headachy. The headaches only hit me before with prior unsuccessful drug trials, so that’s why I went down on the Nort.
How much lyrica are you taking? Oh, and one last qn.: dr. S.'s fave med used to be nortriptyline. Have you got any idea why he started you with Lyrica instead?
I am sorry you are having all these issues. I have been there. I finally found the right doctor and received the correct diagnosis and now I feel, not cured, but in control. I have significantly reduced my symptoms, have a plan to follow, and can enjoy life again. I have so much to share that I have put it all in a blog, no ads and no gimmicks, which may be of help to you. It took 3 years to get to get to the right help. Good Luck to you (www.vertigotalesandtastes.blogspot.com) Hope this is helpful.
thank you for caring. I read over your blog and found it very helpful for newbies! For me, it had many good reminders.
One quick question: what was the highest dose of nortriptyline you got on?
The first time I went on Nortriptyline I started with 25mgs (3-weeks) and then went to 50 mgs.(3 weeks) Then tapered slowly back to 25mgs (2.5 weeks) and 10mgs.( 10 days) The second time I went on the medication, I had been on the diet and watching triggers for at least 17 months so my schedule was: 3 weeks at 25 mgs; 3 weeks at 50mgs; 1 week at 35mgs; 2 weeks at 25 mgs; 4 days at 20mgs; and 8 days at 10 mgs. This worked well for me. You must work with your doctor because all cases are different. You must taper off slowly and be strict about triggers while on the medication. This program works but you have to push yourself through the hard part. Just like other hard things in life. Later, you can cheat a little and enjoy small portions of your favorites. I will write a “cheat” blog soon. I just added an email box (secret) if you want to add your address to receive new posts. Glad to help.
(vertigotalesandtastes.blogspot.com
Thanks a lot for your detailed and thoughtful answer and suggestions! I’m on 50 mg but still not making progress. The fluorescent lights and the computer kill me and bring back most all the symptoms.
Thanks again!!
This may sound silly to you but it is worth a try. (By the way, are those fluorescent lights at work? If they are at home you should change to LED. If you have your own office or area at work, could you turn off the lights and have a desk-top LED lamp?) Can you wear a visor at work? Are you taking breaks from the computer? Too much eye motion can be a real problem for me. For me, when I am on a strict diet, am not too busy after hours and keep stress low, I can sit at the computer longer and I am less affected by the lights. Also, it is real helpful to drink at least 8- 8oz glasses of water a day. It did make a difference for me. Good luck.
Just checked out your blog & I loved it - thanks for sharing your story. It’s so comforting to hear of your success, and I really like your perspective that it’s about gaining control of your life - not about finding a cure - but, that would be nice, wouldn’t it…
I’ve been in denial about my recent MAV diagnosis - surely “just a migraine” can not possibly wreak havoc on my body like this - I was convinced the Dr’s had to be missing something… but I’m coming to terms with it and realizing I need to get to work on feeling better by changing the things that are within my control. Your blog and this whole MAV website was just what I needed today - thanks.
I have been struggling everyday for over the last year and a half. I had a neurontologist diagnose me with MAV and am now working with another neurologist who has tried a combination of drugs that have not done much. The botox did wonders for my face but not my headaches. There are days when I feel ok but any activity seems to set my symptoms off. The weather and the car are the biggest triggers although any physical movement can trigger the dizziness. Brain fog is a big issue as well. Motor weakness…my limbs go numb. I admire those that are working through the symptoms. I am so dysfunctional and limited. My headaches are more of the background type but it is the chronic dizziness that wears on my soul.
The nuerontologist thinks that I had a virus, vestibular neuritis that became a full blown chronic migraine.
I am sure it is different for each individual and how low your threshold is because of other triggers. If you did not get a good nights sleep, ate dinner out at a restaurant and did a long walk in the sun while talking to a friend, then your threshold might be low and 20 minutes at the computer might set off some vertigo. If you have been very strict about triggers and you are feeling good, you might not need a break for 30 minutes. In general, I have an easier time in the cool weather months (November - June) than I do in the heat (July - October). Heat is a big trigger for me and I really have to be strict about everything else. Maybe only 15 minutes at a time on the computer, drink more cold fluids and exercise very early or after 4:00pm. Even then, I may need a short course of Nortriptyline. It certainly is not easy to control all the possible triggers. You will need to find your own comfort level at the computer, and it may change as you respond to different triggers. Good luck to you. (vertigotalesandtastes.blogspot.com
