After months of to-ing and fro-ing to GP's, physiotherapists etc. and a lot of worry and heartache I finally saw an Audiologist who has diagnosed me with Migraine Associated Dizziness. I don't get the headaches but I do get visual disturbance and a horrible woozy, dizzy feeling everyday for the last 4 months.
I was prescribed Pizotifin starting at 0.5mg building up to 2mg over the weeks and writing a daily food/trigger diary, plus an MRI scan of my head scheduled for mid-August. (slightly aprehensive about this).
I'm in week 3 of the diary and Pizotifin (excuse my spelling) and although initially I felt like things were getting better it feels like I'm going back to how I was - daily imbalanced, tipsy, spaced-out feeling, mild naseau, blotchy vision, tingly pressure across the top of my head in a band, eye ache (left eye predominately), left temple pain and just feeling generally unwell and pretty miserable.
(So far I think my PC screen, flourescent lights & driving makes it worse and hard exercise makes it briefly better, rest and time away from the PC also helps, can't work out any foods yet).
I can function, nothing is really severe but it is persistent and just won't go away. I'm due to go back to see the Audiologist in November.
So that is is my story.
I would like to hear from those who have been diagnosed with similar and their experiences, please.
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SVR28
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We have similar symptoms. Excercise makes me worse though and I have had a bad episode of vertigo with it. Since taking Betahistine this has helped with the room spinning but still get the feeling of being drunk. It's worse when I step off a bus, I have also lost my hearing in my right ear and wear a hearing aid in my left ear, plenty of tinnitus too. I was diagnosed with Meniere 's Disease. I have also been diagnosed with Migraine with Aura and I don't get headache 's or pain in the eye. Only a wave of pain at the base of the back of my head but I do get the vision problems you get. Not sure if this helps you but I thought I would share. I am still under a neurologist looking for reasons why this is happening. I wish you well xx
Thanks very much for the reply. I think it is really comforting to know there are others out there experiencing similar things. It doesn't cure it but it does seem to help to know I'm not alone and am not going crazy.
The tipsy feeling is horrible isn't it? I can't think of any other way to explain it so that people will understand.
Sounds like we are in the same boat with continued investigations, lets hope they find the solutions to our problems.
I was perfectly fine, healthy, a little overweight maybe but OK, until the end of February then everything seemed to go wrong from there.
I will never take my health for granted again and pray for the day things return to normal. Even one day would be nice at the moment.
You are welcome, I was in two minds whether to share symptoms with you , so I am glad I did and it has helped you. Anything neurological takes an age to get answers. I have been on a quest now for over 9 years. My symptoms have gradually deteriorated over this time, so the medical professionals are waiting to see what eventually appears. For me though the not knowing is harder.
I could not agree more with you. When I went to see my GP time and time again, and all the results and tests I had were coming back as fine, she said "that must be reassuring" but it wasn't at all. Instead I was left thinking that it must be such an obscure, dreadful illness that they just haven't picked it up yet, I was also left feeling like they thought I was making it all up. The not knowing, I think, is a major contributing factor to worry, which causes stress and then feeling so much worse - certainly for me. I don't think the doctors get the emotional toll this takes on a person.
Having finally seen someone, the Audilogist, who seemed to know what they were talking about, finding this forum and reading the posts has made a big difference on my outlook which I think has made me able to cope a little bit better.
9 years is a long time to be without any satisfactory explanation or solution, that must be difficult to deal with. I do hope you can get some kind of resolution.
My dad is a surgeon and I think we all expect so much from the medical profession to provide us with an immediate cure in this day and age but as my dad calmly explains (when I'm tearing my hair out with frustration and anger toward the doctors) although breakthroughs are being made everyday there is still much to learn and then of course each one of us are different with our own set of circumstances that it is difficult to pin point exactly what the problems are, where they come from and how to treat them.
We can only just have faith and keep smiling, easy to type I know but it's just got to be done.
Best wishes.
Very true, good luck in your own journey.
Keep me posted,
Catherine xx
Hi SVR28. If you click on my name you will be able to read my story, or click on the top listing under Popular on the right hand side. I can say i know where you are coming from, i have been through hell, but now i am left with the dizziness like you have put it, but also my left arm has stabbing pains and pins and needles.
I am seeing my neurologist for the first time on tuesday. I will be hoping to get some news on what's happened to me, but i am not going to hold my breath. I will be posting it sometime next week.
I had this as well and they found that I had impigned nerves in my neck (C6, C7) that was causing the pins and needles, particularly in my baby and ring finger in my left hand and also along my whole arm from my shoulder down - it was on and off.
I had 5 cortisone injections into my neck under general aneathestic about a month ago now. My neck is still not great but at least the funny feeling in my arm has subsided.
I go and see a phytiostherapist and get regular massages, heat pad etc. and try to be less stressed out in general.
I did all of this privately as I had to fight with my GP to get seen by anyone (I think she thought I was making stuff up) but in the end things are slowly being sorted out. The Migraine diagnosis came much later due to waiting lists to be seen on the NHS (my private medical aid eventually ran out).
So, the Audiologist is through the NHS and she is clearly very competent but the waiting lists are, as mentioned, horrendous. I guess there is only so much they can do and in the meantime we sit suffering and wondering what on earth could be wrong with us.
We'll get there in the end. Hang in there and good luck for Tuesday.
Hello. I was also diagnosed with migraine dizziness by ENT. I hadn't realised that the headaches I was getting were migraines until then. Sometimes I get the dizziness without the headache, which is also a diagnosis. I am having a "dizzy day" today, but came back from a holiday last night ( hot weather, changes in my usual routine, less sleep, and the funny lighting in airports are all triggers for me, but I would rather have a nice holiday and risk a migraine than not go away at all).
I am currently on one of the triptans (I am having a complete word-finding malfunction right now so can't remember the name!) but it doesn't work unless I have a headache.
Your dad is right, we do expect a lot from medicine, and one of the difficulties with migraine is that it is a brain problem, and we still know so little about the mysteries of the brain.
Please don't worry about the MRI scan, it's not as scary as you think (I've had 3 and I don't like confined spaces and I'm a fidget, but I did fine each time).
Thanks for your reply. It was the ENT person who also diagnosed me and your description of a "dizzy day" is exactly what happens to me and I also call them that to my husband so he knows I'm off kilter for the day. I had a one of them yesterday (today just a tingly band across my the top of my head).
I think lights bother me as well, I've been complaining about the lights in my office for years and finally got our helpdesk to remove a couple of the fluorescent tubes eventhough everyone says its too dark, for me its still too bright! Also I always feel ill (dizzy, nauseous) after about 15mins of grocery shopping at our local Sainsbury's and I'm wondering if it may be the lighting in there as well, or maybe I just hate grocery shopping!
It sounds like the medications are fine for when one has an actual headache but not for the other things. But it's still early days for me on Pizotifen and this whole Silent Migraine (Dizziness) malarkey.
I'm due to see the specialist again in November for the follow-up. I can definitely say things have improved from where I was even a month ago so that is a step in the right direction at least.
Definitely have problems with supermarket lights too! Last Hallow'een our ASDA had one aisle with an orange fluorescent light and I got a full-blown migraine within a minute of walking along it. As a child I used to feel odd in the lighting sections of department stores - remember feeling light-headed and exhausted & sick, but everyone just thought it was me being bored about going on a shopping trip!
I am on Naratriptan. And atenolol to try to prevent them happening in the first place, but it doesn't really work.
I have read somewhere that a lot of migraine medications are based on the idea that migraine is a problem with blood flow to the brain, but that there are some theories that the aura part of migraine (and I suppose the dizziness part & the other weird symptoms of silent migraine) is caused by a change in electrical activity in the brain. So it would perhaps stand to reason that medication to deal with blood flow problems wouldn't have any effect on electrical activity.
Hope your neuro appointment goes well, and glad that things have improved.
Well I had my appointment to see my neurologist and it was very interesting. I was lucky because the 9am appointment didn’t turn up, so as I was early my appointment it was a good long one and not a rush.
The neurologist had all my many test results Inc my MIR scan on the computer, so all the information he needed was there. He did a physical test on me that lasted about 15mins this consisted of reflexes, eyes, movement, balance, and body weakness.
He explained in great detail about the MIR scan, blood flow results, and other thing he needed to know and was looking for. He looked back at my life file that the hospital have on us. Any surgery I have had, he discussed all medication I have been on over the last few years, and treatment I have had.
Then I was hit with it, the in-depth chat about my MIR scan and Hemiplegic Migraine. I was informed that if I had had a Hemiplegic Migraine then the MIR scans would be showing different results, and he explained. My face was of shock, as he informed me that I have not and do not suffer from Hemiplegic Migraine’s.
He believes that I did have a migraine that day, but it is possibly all linked and connected to my Long QT Syndrome, the pumping station. What was a shock was he was well up to date on the Long QT Syndrome possible links with Migraine’s. He knew all about the electrical signals, channel genes, and when I informed him that I am having genetic testing to find out what gene type I have, he requested that he would like to see the results, and then started to explain the different channel genes and what they are.
He wants me to have a MIR scan on my neck to make sure all is ok there, he has written to my cardiologist explaining his findings, and requesting he is kept up to date with the results, and wants to see me in December for all the results and make sure I’m ok.
So there we are what a shock. I have had a copy of his report sent to me in the post and it is very interesting. I still get partial dizziness on exertion and my left arm still gives discomfort. I will give another update after I have seen my cardiologist.
Your results are interesting. I don't know much about the things you mention but I'm going to look them up now. Does this mean you are coming off the migraine forum!?!
There appears to be so much more to our bodies than we realise or appreciate, when something goes wrong it's all so connected trying to find out what the route cause can take ages.
I have my MRI on Thursday and I must say I am apprehensive about it and what they are going to find. I'm off to China in 3 weeks time for a 5 day trek of the Wall so I hope they have the results before then and it's nothing dire.
Steve1234, I find it very interesting that you and I suffer from similar complaints with the dizziness, tingly fingers and left arm (I also have an intermittent sharp & achy chest pain, that is driving me nuts, for the last 7 months but according to all the tests that have been done my heart is just fine).
Incidentally I think I may have found my trigger for the silent migraines, Coffee. Everyday for the last 3 years I have a Costa Latte or Americano, just the one and then nothing else but water (occasionally a tea) for the rest of the day. For the last 4 days I have skipped this coffee for whatever reason and I'm happy to say my dizzy/drunk feeling has gone. I have a mild brain fog and blotchy vision still but these are less and the dizzy weirdness has gone - hooray! I'm going to carry on for a while longer, then have a coffee and see if this makes a difference.
If it is the coffee why now, after all these years of drinking it, is it causing me to have migraine symptoms? So strange.
Steve1234, I'm looking forward to your next update.
Hi sorry for the delay. Latest Is i have Neuroforaminal narrowing c5/6 6/7 and this is the cause of the stabbing pains and numbness. But as for face Tingling and dizziness no idea. I now suffer from slurred speech when I chat for too long.
So I am on Gabapentin for the arm problem, but as for the dizziness and speech problems they have no idea.
I'm in hospital now because yesterday was very bad, again all the symptoms off a stroke,turned out not a stroke thank God, but they have no idea what it is.
Of to see the specialists for ear nose and throat today so hopefully we may have a answer.
Hope China went well, and you are on the mend with good results
China went very well indeed, thanks for asking. I was there for 9 days in all and I had no symptoms! Hooray!
I was out in the fresh air, miles away from anywhere. I hiked between 8-12 hours a day, it was very tough and arduous, going up and down uneven stairs for hours on end in the baking sun.
I think the difference was no TV, no PC, no fluorscent lights, fresh food, no coffee, no tea, plenty of water, exercise and above all (for me) no stress of driving in London traffic.
A day or so on my return and it all came back again...
My MRI was perfectly normal - I do have a brain. Having done research, face tingling and feeling out of it is part and parcel of the silent migraine associated dizziness.
I saw my ENT expert in November and she seems pleased with my progress. I've been on my Pizotifen for just over 6 months now and they have also prescribed me Amlotriptan for that time of the month as they think it could also be hormone related - I've been on that 2 months now and it seems to have made a difference - although today has been one of my "wonky" days.
Overall I am not 100% better or feeling myself but most days I am better than I was when I first posted on here and I can manage. I have about 7 days a month of feeling (almost) absolutely fine which is an improvement. They want me to be symptom free but I know I'm not. I also know I feel like I've changed somehow. I'm not as "with-it" or happy as I used to be and that is a worry.
We also want to try for another child but I can't until I am taken off the Pizotifen and the other tablet so it will be very interesting to see how that goes - how I will be when I'm off these meds - I've put on a lot of weight with this drug despite my mad exercising so I'll be pleased to get rid of that at least. (Maybe I should move to China!)
I read somewhere that these medications are trial and error until you get the one that works for you. Also they are apparently great at reducing the actual headache of the migraine but not that good at stopping the Auras which is basically what we suffer from and I can attest to that.
I see the ENT expert again in May for another review.
I'm really sorry to hear that you have had a bad turn. They are not funny and very scary so you have my heartfelt sympathies.
Good luck at the ENT specialist today. I do hope they can provide you with some lasting answers. Have faith.
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