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Bels journal: From despair to...??

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: July 2020
**Number & duration of acute phase(s) Twice so far. July 3 weeks, October ongoing
Any suspicious physical event/trauma leading up to dizziness: No
Start of chronic phase: October 11, 2020
Age at chronic onset: 37
Started medication: Propranolol
Stopped medication:
Number & type of consultants seen to date: One: Neurologist
Diagnoses received (one I’m “running with” first): Two: BPPV July by a Physio, Vestibular Migraine by the neurologist.
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: I’ve started supplements Magnesium, B2, VitD, Coq10
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character: I would say very briefly. Like seconds sometimes but I have a fullness in my ear. I feel something in them.
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines: mentrual migraines for 15years.
Any family history of migraines: Dad, brother, grandmother
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?: Very supportive

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)

Spinning vertigo. This is how it started. Quite severe. I do have milder rotational vertigo now… positional. Although of course this could change.

What’s Ongoing: (what symptoms you still get)

Dizziness with head movements. Neck pain, down beating nystagmus. I notice looking in the dark bad. Hard to focus. Photophobia, vomiting and nausea daily.

My Worse Day Now: (description of the worst day you get now)

I’m not sleeping well as I’m propped up on pillows. Bit of insomnia. Extremely nauseous and I vomit first thing. Head cannot move even the slightest. Room spins, particularly when lying down. I get up to vomit and walking into walls. Extremely fatigued.

Rough History

(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)

  • It all began when …
  • The first thing I did …

It all began in July of 2020. I went to bed perfectly fine, woke up, turned my head and bam … the room spun 300 miles and hour. Moved my head the opposite direction and same thing. Very scary. I thought I had low blood pressure. Felt terrible all day. Tried to go to sleep that night and same thing when I laid down. I was vomiting everywhere… went to ER and they diagnosed BPPV and did the Epley. This made my vomit for hours. They gave me Valium and anti nausea pills and sent me in my way. I went to a vertigo Physio a few days later who noticed I had downbeating nystagmus which she thought was odd for BPPV. Still, she explained that I still had vertigo on the Dix Hallpike and treated it for anterior canal conversion. It slowly went away after about 2.5 weeks.

Totally symptom free for 12 weeks.

Then, October I was leaning over reading a text message on my kitchen bench, and saw it spinning. I tested it again by moving my whole body to the right, and the room spun a bit.
I felt fine enough for 3 days though. To a point where I even told my husband I might not need to go get the Epley done. I went anyway, and again she noticed downbeating nystagmus just my sitting up. She did however see classic BPPV too so did the Epley. This is where it all goes pair shaped. From then on, I have had constant dizziness, vomiting, loss of appetite, head movements - particularly down - cause me to feel yuk. I feel it in the back of my head. Did not sleep at all that night. Walls jumping back and forth. Vomiting.

I went to the doctor in the morning, who gave me more nausea tablets, which do not work - and a referral to neurologist. I was a mess. I luckily got in within the week as there had been a cancellation. I had a CT scan done prior.

The neurologist did a series of tests which were horrible. I was focused the whole day not to vomit. He pretty promptly diagnosed vestibular migraines, said to take 4 weeks off work and put me on propranolol. Start at 20mg a day, and up by 10mg each week till I reach 60mg. Ordered an MRI which is in December.

Mum came to stay, and is still here to help me with my daughters. It’s now 2 weeks on, and I feel sooo terrible. I have zero energy. For example, today, I could not muster the energy to pick up a pen and write words on a page.

I am not sleeping. Last night I woke at 1;15am and could not get back to sleep. This is often.

I have never felt as depressed I have in the last two weeks. I am crying constantly, vomiting nearly every day, dwelling on the future, cannot take care of my children. I can’t seem to see any positives. As much as I am trying - and I’m really trying.

I got another migraine yesterday which wiped me out. The pain is not as severe as usual, but the balance and everything that goes with it are terrible. FYI - I was a regular mentrual migraine girl once a month. Taking a Maxalt triptan worked a treat. I could get on with life.

I am relying on google and forums for answers. Like why am I vomiting? The medication or VM? Will these side effects of extreme fatigue ever go? Is this the right Med for me? Will I ever feel better?

I’m writing a list of questions tonight to email my neurologist as I don’t see him again for another 6 weeks.

It’s all very overwhelming and I know I’m at the highest level of stress I’ve ever been. I’ve dropped 5kg and I’m a really skinny person as it is. I can’t afford to do that.

I’ve seen a psychologist but I’m not sure she is helping yet. I’m worried about returning to work - high stress and demanding. Being a good mother and wife etc.

So, I’m really struggling right now. Nobody has this disorder that I know and no one really understands it.

I am desperate just to feel some level of energy and better within myself.

I realise I am early days but I feel like I’ve walked through the gates of hell, the doors have closed, and I can’t find my way out.

I hope to update this with more positivity. And I’m sorry if this sounds all too negative. I know I have to get my mental state better, but I wonder if it’s the drugs amplifying my already distressed state.

You all seem so supportive of one another and I hope to be of support to you as we travel through this together.

Start of Journal

Today I …

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Welcome to the site @Belindy and sorry to hear you are suffering. You are far from alone here, sadly.

Unfortunately the first year of this is the worst but you will improve. Explore the different treatment options with your health provider.

Thank you for taking the time to complete this detailed form. These are really helpful to others.

Hi Belinda. Welcome. My sympathies go out to you. I have been exactly where you now are. The pattern of our attacks are identical though I never had the monthly menstrual migraines. Don’t worry. I am with you every but of the way. You sound so much like I was. Notice the Past Tense didn’t you? You will improve. I guarantee it. We have so much in common even down to the same drug. I suspect you will need to hit the 60mg dose for a few weeks before things start to settle down a bit. Meantime you can ask the doctor for something for the nausea. That’s very debilitating. I lost quite a lot of weight. Couldn’t eat when I was feeling sick. Try not to cry. Wastes far too much energy you will need for other things believe me. Years of frustration I suspect as much as anything. You need to accept you have an illness and it’s going to be with you a good while, months. You need to adapt and accept that for the time being you need to rely on your supportive family and concentrate on getting better. Good luck with the Propranolol. It may well reduce the migraine frequency and severity within a couple of weeks and then the other symptoms should begin to ease up and things will seem more positive again. You can read my Personal Diary on here or get your Mum to read a bit to you if you aren’t up to it as I suspect. Just start with a chunk from the beginning then just fast forward to this very Autumn. Mines long duration. Yours won’t be. I was misdiagnosed for 12 years and untreated and also older than you at start up. All this counted against me. There similarities ended so please don’t worry about that part. Any questions I am not usually far away but slightly different timeline as I am UK based.

It’s a balance disorder. Vertigo and dizziness makes people vomit. I was the same. Had to have injections to stop it because of dehydration. Possible some medication causes vomitting til you get used to it. Only you can tell which. Use the timeline. Yes the fatigue is all part. Your system is exhausted struggling to cope. You need to rest. Struggling on will at this stage make you far worse. Is this the right Med? You might know in six weeks. Longer if you are a very menstrually provoked case I would say. Get Better? Migraine is an ongoing condition but yes you will feel better and the right medication should control most of the symptoms most of the time within a few months. Preventative drugs can take months to really take best control.
Med?

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@Belindy Welcome! You came to the right place. Most of us here have experienced the same symptoms as you have. I was diagnosed with the same exact thing as you: VM & BPPV. I had the Epley and the one time worked for me (knock on wood). My symptoms also started the end of July/beginning of August. The dizziness started first, then I awoke from a nap a few weeks later and had bi-lateral ear fullness. The next day, I had TMJ. I felt like new things were popping up weekly and the fatigue on-going. I wish my neuro had told me to take a month off. I’ve missed so much work, I am surprised they haven’t fired me yet and most of it was without pay, so that definitely has sucked. I’m on Ami and Ubrelvy, but I haven’t noticed much of a change, but it’s only been a few weeks since I was diagnosed and started on the meds. I hear it can take many tries to find the right medication. My vertigo was not as bad as yours. I did get nauseous, but never threw up. I watched a video on youtube the other day and the neuro said it can take many times of doing the Epley for some people to get the crystals back in place. There are exercises you can do at home that can help. See link below. I hope you feel better soon!

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Hi Belindy,
So sorry you had to find your way here and that you are really suffering badly. It sounds a lot like how MAV started for me. I was 7 months pregnant and got up one day and bam (like you) went down, hit my head on the edge of the bath and every time I moved my head at all, vomited. I was diagnosed with labyrinthitis and it went after two weeks of hell, but a few months later returned in a lesser, more ongoing form. I found it really hard to accept there wasn’t something in my ears, often wished I could pull them off!

Like others have said it can take a while for the meds to start working and you need to work up to taking a therapeutic dose which will vary from person to person. If propanalol isn’t the drug for you there are lots of others to try. Two years ago I had the worst bout ever that lasted months and was bed bound for some of that, like you I lost lots of weight, weak as a kitten. I also felt quite low and distressed, even illogical (I was frightened of taking some meds in case they made things worse) not my usual level headed self. It felt like my whole body was in rebellion against me.Just before it all kicked off I’d ordered some great hiking shoes, I was too ill to even try them on or look at them and thought at one low point I’d never get to wear them but I’ve just got back from a muddy hike and their soles are well worn now. Have faith, it will gradually improve, but it’s not like a virus that burns out after a few weeks. You don’t sound too negative, if you want to vent then this is a great place as most of us have been in dark places.

“When you are going through hell, keep going.” Be kind to yourself, accept any help going.If all you can manage in a day is dragging yourself to the bathroom then so be it. Don’t push yourself too much. I hope the CT scan and the up coming MRI will give you peace of mind that nothing life threatening is going on, you are doing really well getting a diagnosis and treatment so quickly.

If the anti emetic isn’t working (Is it Stemetil?) perhaps your neurologist could suggest a different one to try and advise on an abortive to take for headaches (that don’t interact with the propanalol).

All the best, hope the nausea abates soon.

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Thanks for replying everyone. God what an awful awful thing.

Mum typed a long letter to the neurologist and he’s kindly booked me a Telehealth appointment on Thursday to run through my questions.

This lethargy is nothing I’ve ever ever experienced. I can’t work out whether the way I feel is because of VM or the medication. My head and neck movement is a major trigger for unsteadiness daily, but does it cause this much tiredness? I upped the dose this morning.

Last night and today I have had such blurry vision and double vision - a couple of hours after taking the meds. Insomnia, Vomiting every morning, diarrhoea, and fatigue to the most extreme. Am I too early for my body to adjust? 2 weeks. I am hoping it goes away. My 10 year wedding anniversary is on Thursday and it took a lot just to write his card!

@Onandon03 did you experience these sort of side effects when starting propranolol? I want to give it a red hot go and persist - as I think of the waste of time it is for the past couple of weeks not to… but goodness me, it’s a battle everyday. Is there anything you can suggest for a better nights sleep while taking this?

Can I also ask what a good period feels like to you? Many people report feeling 80% - 95%. What does that mean? Would it mean you have energy to live normally, can work and live life - but may feel off when you move your head the wrong way etc?

How often are setbacks when you feel your treatment is working? I know everyone is different though.

Can I also ask about driving when you’re feeling better?

Thank you for your positive thoughts and reassurance. So many people are delivering meals and helping it’s surprising - and so lovely. I wish they didn’t have a need to though. I really hope I’m one of those people who end up with a great success story - as I so desperately hope the same for you all.

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Hi Again. I was ill. So ill I would have swallowed horse manure if somebody had told me it would help believe me. Could be bit hard to compare in great detail. Maybe you are trying to ‘struggle on’ and ‘do things’ you see. I couldn’t. I had no balance, couldn’t walk unassisted so just had to lie flat and still for days on end. More than long enough to develop severe bedsores. Oh yes It is an awful condition and having been there I really can never see what its doesn’t receive more medical attention both in terms of research and treatment. It is totally debilitating. No doubt on that score at all. I don’t remember feeling fatigued but I did sleep a lot of the time both day and night. I do not remember much by way of blurry vision. Perhaps a bit. Yes definitely some. I was nauseous for months maybe a year even on Propranolol. You are not advised to take an anti sickness meds with the betablockers from memory. So I didnt and lost weight due to not eating. Once on the PP I wasn’t vomiting just felt nauseous constantly.

However it pretty hard to distinguish between VM symptoms and drug side effects sometimes. Nausea and vomiting can come from either. Blurry vision more likely the drugs although must be uncommon with PP. Very common with ADs though. Many people with VM do complain of extreme fatigue, not unusual at all.

How to get better night sleep? Difficult that one. Until you become really used to the PP it will affect your sleep and you may experience vivid dreams that wake you up too. I think it does cause sleep issues for some but VM will as well. Lots of people get vertigo if they turn over in bed and that will wake them up. I did regularly so sleep can be very disturbed and obviously patient’s emotional state plays a huge part too there. I doubt sleeping tablets would help either because of their own side effects. The PP should help with anxiety once you hit an effective dose level. Try sleeping propped up on more pillows and make everything comfortable for you in whatever way you feel best.

What does 85%-95% mean. Well its how medics judge but its meaningless because my 85% and yours would be very different in normal circumstances I imagine anyway. 80%-90% for me is being up and able to function up to a point and that is the aim of the preventatives to give you back some QOL whilst things settle down. Tbh don’t expect to return to your pre attack functioning any time soon. Expect a long haul and you won’t be disappointed. But 80%-90% should put you back cooking most of the meals, amusing the children and so on probably still feeling dizzy and off balance but at a lower intensity than now, hopefully without true vertigo which is making you sick and so fatigued. Symptoms take months to go away and recede lowly. ‘Gradually fade’ is a phrase I used recently. Think of it as, a phrase currently much banded about, a ‘New Normal’. With luck the PP or what ever other preventative you might move on to, will control most of the migraine attacks, they won’t happen as often.

Not sure what you mean by setbacks. People can sometimes totally relapse but normally the entire condition will just very very gradually reduce in severity and you will regain functionality but probably have to call out for help at some stage most days for quite a long time ahead. Push It Too Far and it will bite back every time. Take everything steadily.

Driving? Here of course much depends on local legislation. In UK one is supposed to stop and surrender driving licence. Need to check insurance too. Probably not covered to drive until in much better state of health. Personally I want to get back to driving once it’s safe to do so. Still not sure when that’s likely to be.

Oh Work? Depends on what you do. That can depend on how toxic to VM the work environment proves to be. Some people work. Some cannot. At the time mine went chronic I wasn’t working anyway but I know I couldn’t have done so even if I had wished. My work life was 50% computer screens and I went at least 8 months at the beginning unable to look at a screen of any kind at all. Then there was transport, the need to drive to get there another impossibility as would have been walking to/from a bus stop even if that had been an option. When episodic I was working and taking time out for attacks. I did manage to get OH involved in order to justify cutting my screen time on occasions which helped a bit.

All the above is obviously my own experience. Once you are bit better you will be able to read more threads by placing any of your questions in the Search box and checking out the results. Helen

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I gave a talk for my hospital last week, and it is posted here. Hope it may help in some way.

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Just thought I would update this diary… probably for my own benefit to look back and find improvement.

Had another neurologist appointment yesterday. The side effects of propranolol were too much for me. Making me feel so ill and weak. I’m now weening off that and have started Pizotifen last night. I’ve woken with a completely new type of tired. Wow! Feel quite drugged and sleepy, and that is only 0.5mg. But the positives are that I actually slept and I have not felt the need to vomit this morning for the first time in a long time.

Mum went home yesterday so it’s my first day by myself. She’ll be back though, and the kids will be home from school later.

I’ve got more time off work. I really hope I don’t need it. I want to go back at least part time to see how I go. But will definitely need to adjust to this medication so I’m able to get up in the morning. Maybe taking it at 5pm? Especially when it increases. I’ve quit coffee which is my vice. This in itself would cause headaches and tiredness. I cannot believe I can’t have my morning coffee. I’m still going to test this theory and reintroduce down the track. It never caused a problem in the past. I don’t think any food did in the past. I wonder if this changes.

I’m still quite dizzy and have visual disturbances. Blurry vision and more troubling, double vision. Sometimes hard to track the the images on the tv. Walking backwards triggers something too.

I’m also looking into the Watson approach PT. It’s very pricey but have booked it in. My neurologist thinks it’s a scam. Not sure what to think about that. Have I got anything to lose??

Will post after a few weeks on pizotifen. Hopefully it’s the med for me!

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That happened to me. Good you tried it though. It really helps some people. Good luck with the new one!

Yes. Your brain has never been in hypersupersensitive mode before.

I am with your neuro. Be very careful trying out any new form of anything. It could actually make you much worse. You need the migraine under good tight control before experimenting with anything new.

Btw and just for the record how much Propranalol were you taking and how quickly was it introduced to your system?

Hi @Onandon03, I only got up to 40mg over 2.5 weeks. I’m tapering off now and already feeling a touch better.

I’m a secondary school teacher - so high stress, with fluorescent lights, lots of noise, and lots of work. Not very ideal is it. I can take the rest of the year off and perhaps go back in Feb part time. Hopefully that will be enough time.

I am taking pizo at 6pm. I’m sleeping much better thank goodness.

Ahhh now I’m second guessing myself about this Physio. I’ll have to think about it.

Today, I’m getting really bad period pain and I don’t normally get that at all. Actually the past month the whole cycle has been weird. I am beginning to think this whole thing started because of some hormonal changes. I need to replace the mirena - another thing I’m second guessing. It’s been fine the past 6 years. So weird. If I can sort that out… then maybe things might improve along with meds.

It’s also this double vision which is concerning. Does anyone get this?

Thanks for your replies. I have read all of your stories so thanks so much for the support.

Thx for that note about the PP. Could just have been too high a starting dose for a little skinny in the first place but for you it’s water under the bridge now anyway.

I can see you are beginning to get a grasp on MAV. That’s as toxic an environment as you can find apart from adding in 45 hours on three adjacent PC screens. Sure it plays huge role in rising numbers of MAV sufferers (myself very much included). Evolution just isn’t keeping up. Worse case scenario with attempting any new such venture Watson’s being just an example is it could make you much worse. Best in mind MAV is a Migraine Associated balance disorder. Push it too far and you could just lose your balance completely and be unable to stand. Although that if it happened would only be temporary as you appreciate its a move in the wrong direction. Not something you need.

There are strong links between MAV and hormones. I am not a doctor but I think you are in a popular age range for MAV onset after years of straight migraines. From all I read seems common. Could be you are working up to Menopause whats now termed perimenopausal. To hit this you need to research Catamenial migraine and Morena coil threads on here because whatever preventatives you end up with most probably you will eventually need extra help around your period times and there are known treatments and procedures in place to cover that. Do read @LucyLabrador PD for more clues. I never had any Catamenial stuff so cannot help you out there. My full story is in my PD.

The Double Vision. That I understand can be an Ocular Migraine? Might it be that? Have you had those before? If not it could be drug side effect and as such you need to discuss with a doctor very soon. Give your doctor a ring. If it’s a drug related issue it will reverse once the offending drug has left your system. Do you wear prescription spectacles? Do they contain prisms? Do you have any known eye conditions? Or has this double vision just started? Is it constant or momentary? Helen

I hope it’s drug related and it goes. I told the neurologist about it and he quickly said migraine. I don’t wear glasses or known eye conditions. (Except astigmatism). It started last week and comes and goes. More there than not. It’s both eyes. However I have blurry vision too… actually I think I lot of my symptoms are eye related. I had a fairly strong nystagmus and probably still do. Good thing is I’m lying normally in bed now… albeit the room mildly moving.

I haven’t had my MRI yet. God I hope it’s nothing like MS.

Large numbers of new MAVers think it’s their eyes causing it. Many symptoms adversely affect the eyes. However blurry vision and particularly double vision are common symptoms of astigmatism. Quite likely because your brain is struggling to cope it cannot control your astigmatism as well as it usually does. So the visual stuff is taking the brunt. Blurry vision is a common drug side effect though not so much with betablockers or as far as I am aware with Pizotifen. Much more common with antidepressants. Don’t worry about the results of the scan. As Granny always said ‘jump your stiles when you get to them’. VM is far more common than MS and as you are a long term migraineur and 37 I would hazard a guess you stand a much higher chance of it being VM than MS. And the really good news is once the scans done the types of white lesions are so different the medics should know for sure if it is MS to eliminate it. If the white lesions are migraine shaped they will guess it’s VM. There’s no definite test to prove its VM.

Double vision suggests your eyes are not lined up (for a time) and that could be related to the inner ear to eye reflex which is not working as it normally does. That could be down to a peripheral or central issue. MRI would be good to rule out anything dangerous (but those conditions are extremely rare).

When you turn your head, your inner ear is responsible for keeping your eyes tracking together. Nystagmus, when the reflex is firing when it shouldn’t, could cause your vision to diverge. If this reflex is not working as it normally does, some double vision makes sense.

I had this exact issue for a period, and the solution for me was ultimately time, but the immediate solution was a vestibular suppressant in the form of Amitriptyline which was extremely effective at very low dose and resolved my vision problems.

Is the VOR test one way to check for vestibular function or damage

The two tests check vestibular function. On their own they could not determine damage, just capability.

I would not dwell on “damage”. Much can go wrong without damage, I suspect.

For example, my friend got BPPV like symptoms after unrelated head surgery. Probably due to loss of inter cranial pressure stability which has a direct influence on the inner ears. He was told this would stabilise after a spell

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Belindy, thank you for sharing your story. I have similar symptoms with episodes of vomiting, diarrhea, imbalance, struggling to see, vertigo etc. They have me on nortriptyline now but it hasn’t helped yet…slowly upping the dosage. Thankfully my kids are grown but I remember many rough days when they were young so you have my sympathy. Hope you get some answers soon.

It certainly is tricky @Joan I’ve got a lot of help at the moment, but feel like I’m missing a lot with them too.

I hope the nort works for you. I’m on pizotifen and am upping tonight. I can hardly get out of bed as it is… so a double dose will knock me for 6.

I’m happy to report I feel a touch better… despite some new lady pains which shouldn’t be there. I’m getting an ultrasound soon to make sure everything is in working order. Might have been the catalyst.

I’ll read you story also. You’ll hear from me soon.

All the best Joan. Looking forward to hearing about your RECOVERY as the months go on.