My name is Lou, I live in Twickenham near London, I’m 28 and I was redirected to this forum from the Dizzytimes forum by a kind user… Wow! I never expected to see such a wealth of information here. I have to admit, at being quite overwhelmed by it. I’m suffering the worst few days I’ve ever had during the 7 weeks I’ve been experiencing vertigo, and as much as I knew it in my mind, I didn’t really want to face up to the reality that this probably isn’t going to be a quick fix solution and I am going to have to spend time trying different drugs, and seeing what might work. Up until a few days ago, I was convinced that when I saw the ENT he was going to tell me my sinuses were blocked and that he’d unblock them for me and I could skip off happily into the sunset.
I have a few questions and queries and wondered if anyone could spare some advice. My story goes like this:
April 15th 2011, just over 7 weeks ago now, I was at work having lunch and felt suddenly dizzy. Spent the rest of the day working at my desk, but when got up to go home, felt dizzier. Forced myself to go round the supermarket- felt an intense feeling of being pushed/pulled. I felt feverish, tingly and dizzy and went home to bed. I had a pretty stressful Februray as my boyfriend was ill with his epilepsy, and in March I felt tired all the time and on the edge of getting a virus so I presumed it would pass.
The dizziness subsided but was/is always there. My symptoms were and still are:
- Dizzy- Feeling of being spaced out, looking around the room feels like my eyes are slow, off balance.
- Eyes- At my worst it feels my eyes wont focus properly, like now. They also feel like the prescription is too strong. When I look in the mirror, I have to look at my face in sections- I can’t focus on the whole.
- Ears- feel like I’ve been under water for ages. When I swallow/yawn, I get a crackle/click/pop but nothing clears.
- Tinnitus- Started off high pitched but I could stand it. Increasingly loud in the left ear to point where I can’t be in a room without a fan on. If I’m in a quiet room, its high pitched in the left ear and then starts to take over my brain. I swear it’s like a form of torture.
- Sinus/nose- Sinuses feel blocked. Pressure and pain behind eyes, in cheeks and nose. Nose tingles as though I’ve had anesthetic.
- Headache- Headache wasn’t there for the first 3 weeks… now it’s ther eevery day.
- Sickness- I had bad sickness for the first month and lost 3/4s of a stone. It started to ease but has come back in last week.
- Anxious/depressed/irrational thoughts.
My GP said it was labrynthitis/vestibular neuritis & would go away in a few weeks. Prescribed anthihistimine- Cinnerazine. I tried prochloerapizine- it gave me tremors and insomnia. (Later found out you shouldnt take it if you have allergy to perphenazine- used for anxiety.)
3 weeks in I referred myself privately to an ENT. He said it sounded like a vestibular event, confirmed no hearing loss and said come back in a week if no change.
At 4 weeks in, no change, if anything although the first few days had subsided, it was getting worse again. He wanted a neurological opinion and sent me to a neurologist. He also told me to start taking the Propranalol the GP had given to me which I hadn’t yet started- 1 x 40mg a day, to lower my bp a bit, prevent flushing I was getting and prevent migraines.
I saw the neuro who took my history-
Headaches for 10 years (never investigated properly, always fobbed off)
Sinus pain for similar amount of years
Migraines with aura for 2 years- the first of which cooincided with me one day waking up feeling as though my contact lenses were too strong- Nobody ever got to the bottom of this, I had numeous eye tests and was made to feel mad so I accepted it. Its still with me now. Migraines vary from 0 a month to 6 a month. Zomig works.
Neuro promptly diagnosed CHRONIC MIGRAINE. I found it hard to accept this dx due to the inner ear related symptoms- ear fullness, tinnitus etc. I could see how vertigo and blurry vision would come in. He ordered and MRI and told me to double the beta blocker dose.
The MRI came back clear. The ENT said my sinuses are clear as are my ears (did an ear pressure test). So now I wait to see the neuro in another 2 weeks. In the mean time, I tried accupuncture yesterday and start physio he suggested tomorrow.
However, I have felt so much worse in the last week- I woke up and felt more dizzy, more spaced out and how I did in the beginning of this and during my worst week which was about 3.5wks in. In the last 3 days, I have never known anything like it in my life. Its surpassed any other day I’ve had. I can’t leave the house. I feel like I;m going insane.
- Can anyone tell me if it’s possible I still have an inner ear thing, and that migraine is also a problem? So I have BOTH?
- Can anyone tell me of any suggestions as to why I am getting worse?
- Can anyone tell me if it might be the beta blocker making me feel worse? I know its working because my bp is down a lot from 135/95 to 120/80 and my pulse is low at 58.
- Can anyone tell me if its worth trying to bring the neuro appt forward of if I should stick it out and see if I feel better in next few weks? I figure he wants me to have tried this beta blocker for a number of weeks first.
- What is the likely drug he’ll try next and will it be in addition to the propranolol? I read here about many different drugs- how do they choose which one to use?
- I’ve experienved these symptoms every day for 7 weeks- how do I break this circle??? Do most people suffer ‘attacks’ rather than constant symptoms???
- Is it normal to have better days and then terrible ones? Will I come out of this terrible lull?
- My neuro didnt mention it, but I’ve read about migraine diet and lifestyle. Today I decided to be aware of this and try it… wow— what the hell do you eat?! I had cereal for breakfast, some strawberries and a yoghurt. Then I read I shouldnt eat yoghurt or cereal! What CAN i eat!!!
I’m feeling so down and depressed with this. None of my family or friends seem to get it- especially when I suffer the really bad days- like right now. I feel trapped in my body. I’m not the person I was before all this. I’m scared I’m going to be like this forever and it’s really hard to see any other way. I am frightened and I am scared and I am having irrational thoughts.
I’ve not worked for 7 weeks because of this- I am so out of it, it’s impossible.
If anyone has any advice, I’d be so grateful.