Newbie here with lots of queries- Please help!

Specific Illnesses & Conditions VM/MAV
1

Hi Everyone,

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.
  • Tiredness
  • 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.

Thank you,

Lou xx

2

Hi Lou,
Boy it’s almost impossible not to see myself in the lines of your post. There are many similarities. You should copy and paste this on the portion of the forum where it says to post your story…you should get good feedback here as well. First of all, welcome. You are in a good place with this site. It has helped so much…both for myself and countless others.
I will share that I never had anything near a migraine in my whole life, let alone a regular headache. So when I started getting dizzy, I assumed inner ear/viral etc…went through the battery of tests, all normal and I was diagnosed with a migraine variant. I thought the neuro was a quack and kept saying, “but I don’t get headaches” and he would shrug and say it didn’t matter. He really didn’t offer any education, just told me about some med to try (nortriptyine) and sent me on my way. Through many doctors and specialists etc…I have come to realize I do have a migraine brain, and something triggered it, and now it’s here. I had 24/7 dizziness “off” feeling, my vision didn’t seem right, I started getting anxiety (for the first time in my life) and insomnia, again, for the first time ever…then depression set in. I was scared and confused and didn’t think I wanted my life is this was going to be it.
The good news is this…my life is pretty normal now. I have to take different meds, and they have their side effects, but they have given me my life back. It is easy to ask everyone what their meds are and how they feel or felt, and what worked or didn’t, and the only thing that is truly consistent, is it’s inconsistency. Everyone’s brain reacts differently…I spent hundreds of hours researching every med, and I consider myself quite educated for a layman (woman!) in regards to psyche meds.
For the record, I tried propranolol, and it made me worse. It can also make you depressed. Also, I have found that working with a psychiatrist, vs. a neurologist, i seem to get warmer, more comforting feedback. The meds these doctors use are pretty much the same, so I prefer someone who is used to dealing with the mood/anxiety stuff that this can bring about.
Everyone here is very friendly and supportive…things will improve…have faith and good luck on your journey to wellness…
ps get the book “Heal Your Headache”…it was very informative!!
Kelley

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More recommended books here
3

Hi,
I’m replying on my phone so apologies in advancedoe any errors. I didn’t want you to go unanswered as I know exactly how you are feeling.

I have only got my correct diagnosis in the last three months and I am now into my 13 month of suffering with this god awful illness but it’s not all bad and now you are diagnosed you know what you’re dealing with and this forum is a god send. My mav is mostly under control now, with the odd blip (like this week!). I am taking 20mg of propranalol 3 times a day and have totally cut out caffeine and I’ve had a good few weeks till this last bout of feeling 95% normal. I know I’m lucky. I actually think this last week has been bppv rather than mav as i suffer with that too.

To answer some of your questions -
You can get checked for an inner ear thing but the test is supposedly pretty awful, involving them forcing water into your ear etc I believe.

When I first had mine it was up and down a lot, I think partly cause I was so anxious about it, that makes you stressed and that 100% aggravates the condition. It is now much more settled as a real, and whether I am used to it or the brain adjusts I don’t know, but I do think it levels out.

I think meds affect everyone differently. Propranolol definitely seems to suit me, I haven’t noticed any side effects, although I am told my dose is low. Also I notice you take it once a day, I take mine three times a day and I reas somewhere it is more effective with this illness to dripfeed your body than hit it with a med once a day.

I would say to stick it out so you have more info to go with the Neuro with AND keep a diary! I didn’t do this till I was six months + in and once I’d kept it for 3 months I realised I was at my worst in the days leading upto my period, this assisted in my diagnosis hugely!

I had my first bout for 7-8 weeks then had 2 months totally free then bam it was back and since then I have had around 9 months of being really good about 70% of the time with hard weeks around my period and the odd day here and there.

You will come out of this the other side. I convince myself of that daily as I know what it’s like to feel good sometimes too. I think it does take tine to get the right concoction of drugs and also find if you have any triggers such as certain foods but once you’ve mastered that you can get on with life.

Try to stay positive, I am writing this thinking I need to remember it myself! I know some days when I am particualrly bad I just think that no one is ever going to help me and I will never feel normal again but when you have it under control and all is good you appreciate it even more!

Finally, I am in the UK too and am off to see Dr. Surenthiran at the end of this month as he has been recommended as THE man to see in the UK for this problem. He is based in London so ideal for you. I’m travelling from up north to see him! I’ll let you know how I get on and by then you will be a bit further ahead and may like to see him.

Take care x

4

Hi Lou!
I too am new here…having symptoms starting in April. It amazes me how we are all soooo similar in our sypmtoms. I could’ve been reading about myself! I went almost a month without treatment, and those were among some of my worst days. I finally got a prescription for propanalol (later changed to a similar beta blocker) and I actually felt relief in the days I took it (I think it was also a mind over matter thing, where I finally felt like I was doing something about the spinning). I too have a low resting heart rate in the 50’s, and haven’t noticed much of a difference since taking it. My neuro said to give it atleast 2 weeks just to start working. I think I actually started seeing consistent improvement after having taken it close to 1 month. The first 2 weeks I would have good days followed by bad ones, and I was so worried because I was all over the place. Evertime I had a good day, I was only disappointed because the following one would suck. Now I feel like I am slowly gaining my life back, driving and shopping again. When this all started I couldnt even enter a store without feeling so dizzy and my head felt like it was being compressed. I have been out of work for 7 weeks now as well. I plan on heading back in July, so hopefully I keep moving forward!
You will find a lot of information here. I too started a migraine diet, but the one I was on said dairy and cereal were okay, so I have been eating them daily with no issues. It is challenging though because most everything I ate was a no no on a migraine diet! Oh well, I have been managing.
My heart goes out to you and all of us here on this forum. Good luck to you and hang in there!
Jen

5

Hi Lou

Just a quick message from me as the others have covered a lot of the information. You mentioned that you’ve just had a particularly bad week with the vertigo. Do you know if changes to the weather affect you? I live near you in Hillingdon and I’ve also had a particularly bad week as the weather keeps changing from sunny to rainy/overcast within a few hours every day. Normally I have mild vertigo but the current changes in the pressure and the threat of storms is making me worse. If the weather does affect you, hopefully you’ll see an improvement once the weather settles.

There will be times when you have good days and bad days - Keeping a diary will definitely help you start to identify triggers.

Good luck at the neurologist. I have my first appointment with one too in 2 weeks times

Jeni

6

Hi Lou,

Welcome to the forum. I think you are in the right place which is good news - you will find lots of answers and support here.

I found your post difficult and unsettling to read as, like the others who have responded, it is all so horribly familiar. The good news is that you can (and very likely WILL) get a lot better. I have and so have many others on here.

I will answer your questions as best I can

  • 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?*

Yes. Can always have more than one thing wrong.
*

  • Can anyone tell me of any suggestions as to why I am getting worse?*

I don’t know why but I have experienced this with chronic migraine also. It is very frightening I know. I have had it happen even once I’ve started meds, but don’t panic, the meds take quite a while to really kick in.

** 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.*

Don’t know.

** 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 firs*t.

It does take a while for meds to kick in, however, there may be other meds/treatment that he could add in the meantime.
*

  • 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?*

Each of the specialists seem to have their favourite meds as a first line treatment but also as a second, so hard to say.
*

  • 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???*

People on this forum are mostly experiencing chronic migraine symptoms. Traditionally migraines have been considered as stand alone events/attacks but as my neuro described it to me I was in a ‘cycle of migraines’. The effect of this is chronic symptoms.
*

  • Is it normal to have better days and then terrible ones? Will I come out of this terrible lull?*

Yes and yes.

** 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!!!
*
Some of the neuros aren’t persuaded by the diet and lifestyle thing. It does work for many however (about 40%) so you have a good chance of good results doing this. The good news is that whether your doctor told you about it or not, or is convinced or not, it doesn’t matter. There’s no side effects from the migraine diet. It’s a very healthy lifestyle - regular sleep, moderate regular exercise and the diet is all healthy. Go for it. The only thing is that while there are ‘common’ triggers (eg red wine) others will be individual - yoghurt might be fine for me but hell for you. You’ll only know through trial and error.

Hang in there!
Vic

7

Lou, if you go to this page: index.php you will find a lot of info about diet and lifestyle and also different meds.

8

Lou, so sorry you’ve been landed with this horrible condition. It’s really sad to read your story as its almost exactly the same as mine (down to paying private for ENT). I’ve had this for nearly 14 months now, but can honestly say things are improving -although I don’t say this in the middle of an episode!

I still have problems with my ears, pains etc - as far as my neuro said they are all symptoms of chronic migraine. The anxiety is one of the worst things to handle though and it really knocked me off my feet.

As far as drugs go every neuro will have their favourite. I saw Dr Nick Silver and his first choice is Lyrica.

You need to hang on in there - things will get better - have you had a look at the survival guides on here?
Take care
Tracey

9

Hi everyone,

Thank you all so much for your replies… I’m so sorry you’ve all gone through what you have. However, it’s really helpful and comforting to know I’m not going mad and there are other people like me. To write my story out and for people to respond saying ‘i recognise myself here’ made me cry a bit- I’m sorry you’ve felt like this too, but I felt real relief that my story and symptoms were being met with recognition rather than complete mystery/a lack of understanding. Therefore I really really appreciate you all being so kind and taking the time out to write back to me. Thank you.

Your replies and the info on this board are such a lot to take in right now, especially as Im still going through this rough patch (at least I hope it’s a 'patch") . I intend to reply properly when the tinnitus and crushing head have waned a bit.

Thank you again everyone, I really appreciate your words and am really glad I found this specific migraine vertigo forum.

Lou x

10

Lou, I follow the diet strictly, and I eat cereal most days. However, I’m pretty damned picky about which cereal. Shredded wheat can be nothing but wheat. Cheerios, I believe, also pass muster. You get (sorta) used to reading the ingredients.

11

Hi Everyone,

Thanks again for your msgs! I spent all afternoon reading heal your headache, and then reached breaking point and had to take a Zomig. It was too much to handle, I was up there on a 9.5 severity scale which I’d been stuck in for 2.5 days. It worked, but now I feel guilty. But I’m also wondering, why when I take a triptan, does it cure the headache, but not my chronic new symptoms of tinnitus, full ears and dizzyness? I would really like to understand that.

KELLEY:
Firstly, I ordered Heal your Headache after your post and been manically scouring it today! Thanks for the recommendation. Its very interesting. It must have been so hard for you to accept the diagnosis of migraine when you’d never had a headache! I found it hard enough to accept the diagnosis when I was suffering headache and dizzyness! I wondered if you’d mind telling me how long it was between you experiencing the dizziness and all that came with it, and you feeling that life was back to normal?? (I realise this may be a relatively long time, so I’m bracing myself for it…) Also interested to know how long you were on propranolol for before moving on to something else? Thanks again for replying :slight_smile:

WANNABEENIGELLA:
I love your username!!! Can you believe Nigella is 50? I thought she was way younger than that! Firstly, thanks for replying on your phone- I know that can really be a strain on the eyes! Sorry you had to go 10 months without a diagnosis. Thats a long time to be left in the dark.
I hope I start to level out soon… I did for a while, but it all came swinging back.

Do you think the propranolol has helped you at all? If so, how long did it take you to see a benefit? Actually, my typing was a bit confusing- I was on 40mg once a day for a week and a half, then it got upped to 40mg TWICE a day- but I’m still feeling worse if anything. Ahh well, guess they’ll move onto the next drug soon, or up the dose.

Strange that you had 8 weeks off it, then 2 months free and then back again- did Dr S offer a reason why? I have heard so much about him… My neuro seems to really not give any time to triggers so it could be interesting to know what Dr S thinks.

Thanks again for your encouraging post. :slight_smile: x

JENH21:
Wow Jen- our situation is quite similar!
know what you mean about mind over matter- I suspect some of that with me too- as when I get something in my head and feel down about it, it seems to escalate and make things so much worse! I was hoping you’d say after 2wks, if its not working you can try something new! But I know a month is more realistic :frowning:

Driving and shopping- my 2 benchmarks in life :slight_smile: In this whole saga, I guage my good and bad days on whether I can drive, and the best day in the last 2 months was when I was able to go into a clothes shop, try stuff on, and leave happy (with nice stuff in the bag) ! How long was it before you felt ok to drive/shop? Or was it on and off?

RU gonna stick with eating dairy and cereal? I think if I cut those out as well as everything else there’d be nothin left!! xx

JENLO:
I was considering this weather thing… and then I tried to whack it to the back of my mind because how on earth can you guard against the weather?! But yeah- I’m thinking that it does… Any ideas on how to avoid it?! x

VICTORIA:
Thanks for taking the time to answer every single one of my questions!! I was really touched you’d answered it all. Thank you for your postivity.

How did you manage to crack the cycle?

What you said about the diet and lifestyle being only a good thing whether the neuro is convinced or not, really struck a chord with me, so I decided to put it into action and read the link you sent. Day 2… HARD or what?! But its a small price to pay if it helps right? Thanks again xx

TRACEY:
Thanks for your reply. It made me sad that you felt sad! But I’m glad things are improving for you and its really encouraging to hear. I hadnt looked at the survival guides so thanks for directing me to them. When I did, I was so relieved again to find an understanding. In fact, the piece Scott wrote is so great and hits the nail on the head- I sent it to my family, friends and my bosses at work as it really helps explain things. Thanks again! x

DAVID SHAPIRO:
I’m still a bit stuck on the cereal thing… I’m guessing you’re in the US… but I may be wrong. I think I’ll stick with fruit for breakfast (not citrus!:wink: ) til I get a handle on the cereal thing!!

Thanks again everyone, it’s really kind of you to respond to me and I really appreciate it.

Lou xx