Under investigation for dizziness

Hi carina, i'm on nortriptyline also.  What dosage are you on?  I was on 10mgs but have now increased to 20mgs for silent mirgraines.  Have you read the side effects of nortriptyline to see if they relate to what you experienced today, as they can cause side effects for up to 2 to 3 weeks and a dry mouth is one of them.  I too get a dry mouth from them and they can cause palpitations i understand, cos they did for me one night give me a racing pulse.  You might be extra senstitive to the side effects so perhaps it might be best to give your GP a call just for advice or lower the dosage or both.  Best wishes Anne.

Hello Carina,

I had a similar experience as you when I took Nortryptaline, but my symptoms started from the first night I took it. I have to wait until January to see my neurologist. I did see my family dr and told her after 2nd night of trying it, I couldn't take it any longer, I thought I was going to have a heart attack. She said it would take 1-2 weeks to get used to the drug but I refused and asked for an alternative. She prescribed me Amitriptyline, 10 mg at bedtime for 10 days and then progress to 20 mg at bedtime. No "trip" with this drug...yet. I don't know what type of jobs u have, but I can't work at my computer anymore, it triggers the neck pain, headaches & ocular issues. This is so frustrating because no work, no income and that certainly doesn't help anxiety level. Take care

 

I was prescribed amitryptaline to start off with but found it made me feel so drowsy in the mornings and i found it difficult to get up, also i still got my symptoms even though i took this.  I am just hoping that nortryptaline will work for me otherwise i don't know what to do, i cannot bear the thought of having these so called 'attacks' that come out of the blue.  I just don't understand how from never suffering from headaches i now get this.  How do others cope when they get this bout?  mine can happen anytime, anywhere, even when i am just sitting at my desk :-(

I totally get what ur feeling. Today I had my follow-up ENT appt and as luck would have it, started feeling tremors, slight vertigo and sure enough then came the headache. & nausea. Thank god I had someone to take me or I wouldn't of made it to appt. Yes, computer work is a killer. I'm in sales so I need a car, but they took my licence away due to seizure/fainting (drs are still not in consensus about that) and I can't work, my alternate is to work at computer, but I can't do that either due to these darn headaches. So no work, no pay. The ENT dr is sending me off to a downtown research hospital where he said all specialties are housed in one area and they should be able to come up with some idea of what is ailing me. For now, he said to try to control the migraines with the meds and like you, need to up them to 20 mg. I will be increasing my dose tonight, we will see what trip that takes me on. ENT is not sure what is triggering what, the migraines are triggering inner ear or vice versa. He is now believing I am not suffering from BPPV nor Menieres because he says this has been going on every single day for way too long. I can't begin to tell you how frustrated I am in not knowing what I am dealing with.  Keep us updated, I am interested to see what helps for you as it may help me as well. Take care.

I saw the neurologist yesterday and said i would like to stop taking this medication at some point and he said i would probably need to take it for another 9 months to a year to 'give my brain a chance to heal'.  I assume from the damage caused by migraines and disruption to my balance system.  I should have asked what he meant but i was getting tired at this point from the tests i'd also had done that day for my balance etc.,   He said at the end of the year i should be able to go back to eating whatever i like but to stay on my restricted diet.  I have never been that convinced by this being the cause of my balance problems but became more convinced when i had some chocolate recently and within a couple of hours my balance had gone on tilt again and the following day my vision was all blurred again.  So i think there may be something to it.  Now i am also more aware that i regularly have a dull ache in my ears.  My neck also use to hurt a lot but now that has eased off since these meds.  I am really pleased cos' that was starting to get me down and the GP said it was a trapped nerve, but the consultant said it was all part of silent migraines.  I do still have problems on and off throughout the day but not as bad at i was.  My GP said that Nortriptyline is still quite an expensive drug, even though it has gone past it trademark patency, but the consultant said to make sure i still get nortriptyline from the GP and not amitryptyline, as although it may be cheaper  has more side effects. I thinkt he nortriptyline has increased the tinnitus i suffer with in my left ear from a head injury years ago but he doesn't think at this low dose it does, but i do as the noise level was going down before i took it and now it is a  high pitched screech.  I take time away from my computer screen at work during the day, it would be wise to give your eyes a rest whenever you can and also try to turn down the screen brightness if possible and if you wear glasses get anti reflective ones.   

Thanks Anne for advice on screen brightness and glasses, I will try this.  I too get pain just below my shoulders, below my neck on the back which I am having physiotherapy for (I wondered whether this pain was related to my symptoms).  I feel like I'm falling apart, I've had so many health issues this year, I'm only 53.  Makes me also wonder if it's menopausal related cos I've felt so off since the menopause a few years ago but I would have thought things should have settled by now.  I will carry on with the Nortryptaline (I was originally put on amitryptaline to start with but it made me feel so drowsy, I struggled to wake up in the mornings), my consultant wasn't surprised when I told her this as she said it's a mild sedative but I guess Nortryptaline is too but I don't feel so bad in the mornings with this one.  I'm just hoping that by time I go and see her again in January that I can hopefully be able to say I haven't had many bouts, not much I can do really (just taken my 2 tablets for the day).

you're welcome Carina.  I know it's hard to know what to do for the best as i don't like taking meds unless i really have to.  I've just increased my dose to 20 mgs tonight, so have taken my 2 tablets too, but am concerned a bit about side effects.  I went to a website and read up on other people experiences and it seems some people just can't tolerate this drug at all and it has given them bad dreams, racing heart, constipation, dry mouth, hair loss etc.,  Makes me wonder but then again i haven't had any bad dreams, hope i don't get hair loss as had alopecia areata years ago (bald patches) thankfully which grow back.  If after a couple of weeks i start having more side effects i will decrease back down to 10mgs.  Nortriptyline is less sedative.

I was fine until i stopped the contraceptive pill age 55, which i was on for almost 40 years, to me it was a wonder drug which kept me well balanced as suffered with sever PMT.  Then the gp stopped it out of the blue and within 3 months i had severe arthritis and the consultant said i was dropped into total withdrawal.  Since then i have started on HRT and arthrititis is gone but then 2 years ago this dizziness/balance problem started and consultant said he thinks this was a big part of it.   He said one of the oldest patients who had these silent migraines was 90 years old when they started. 

I can understand how you feel, it is affecting me too, sometimes I'm scared to go out in case I get my dizziness, I'm hoping my nortryptaline tablets will work, I've been taking them for 2 weeks now.  How are you managing to cope with your symptoms and how were you diagnosed? 

Just thought I would add my two cents in. I have been taking Amitryptilin now for 2 1/2 weeks and it has definitely taken the edge off my headaches. I went from a headache pain scale of 10+ to about 2. I had a pretty good day yesterday and today was even better, I was actually able to walk outside for 10 minutes without the dizziness. Became too courageous, went to my mom's did some work, surprised with my energy and BANG! friggin vertigo big time. Came in waves and I thought I was going to have another seizure/faint-jury is still out on that. For me, I think this last attack was brought about by an impending large storm heading our way tonight (remnants of Hurricance Patricia). Yes, I totally get these panic attacks due to our experiences. I am really scared to step in to a mall with my daughter or anyplace for that matter. I've missed out on graduation, birthdays, vacations with my children due to this crap. Anne & Carina, I am close to your age and so hormone fluctuations is something on my mind as well. I did see a chronic pain management dr yesterday and he gave me 2 injections of a anesthetic in the head wihich, of course, made me dizzy yesterday for a short period but thereafter & definitely for the majority of today, I was in great shape. It was not a cortisone shot but similar after effect (dizziness alleviated) to the Dopomedrol given to me on a visit to the ER. This dr said I am his next research project. (Nice.) He said he enjoys working with patients who have not been given a definitive answer to what is ailing them. He definitely sees this as silent migraines and says that my SCM is the tightest he has ever seen. He believes he will make me better. We shall see. So far, he is the only dr who seems truly interested. I was in his office for 3 hours! I will keep everyone updated. Take care

Think I spoke too soon.  Today I have had my migraine back and slight unsteadiness / vertigo type feelings although not as bad as they have been. Hoping to feel better tomorrow after a good night sleep. 

Sorry to read that Carina, hope you bounce back. Think positive, at least you weren't feeling as bad as other episodes. Hopefully, you are on the mend. Keep me updated. I ran out of atriptyline last night, forgot to renew rx and I paid for it today. There for awhile I thought my headaches were getting better and perhaps I could take that pill every other day to gradually wean off it, no luck. Unless it was coincidence. When someone asks me how I am, and Im having a relatively good day, Im almost afraid to say ok because it will be a sure sign that the next day will be hell...lol.  Anyways, do take care, pray for better days for everyone

Thanks.  In general, i do think the nortryptaline tablets are working as i don't get my dizziness as bad as i used to before not taking them but i do get my 'bad days' too but hopefully when i see my consultant in January i will be able to give her more of a positive outcome but i've no idea what will happen after that.

HI carina

i am much improved on nortriptyline but still have 'odd' days too.  I saw my consultant and said it may take about a year for my 'brain to heal' as i asked if i could come off them and he said he would like me to continue with them for another 9 months.  Overall i feel much better and think they are helping.

Do you still get the migraines on nortrtptyline?  I woke up with a migraine today and not been able to go to work and I am on nortrtptyline.  My bouts of dizziness are less frequent but I am surprised to get this migraine today is this normal? 

Hi Carina

I've been a bit wonky this week, felt the dizziness in the background.  Also woke this morning with a lot of pain in my left shoulder blade.  I took some ibuprofen.  I'm still on the nortriptyline as it has helped with the visual problems that are supposed to be part of the silent migraines, where i was having trouble focusing my eyes and everything appeared out of focus.  I think i still get the odd days but not as bad as it use to be where i would have a good hour, then a bad hour and be all over the place, walking to one side and feeling my balance was all over the place.  I haven't been too steady today because of this shoulder pain.  It's hard to know what's going on.  I don't have migraines that i am aware of as such but the consultant said this was what was causing my strange visual problems and affecting my balance and that is why they are called 'silent' but they were affecting me neurologically. I will continue to take the nortriptyline as i have to drive as a community nurse and DVLA are asking my GP if it is safe for me to continue driving.

It really knocked my confidence yesterday when I got my dizziness.  I'm writing everything down so that I can show my consultant in January.  My last bout was a month ago.  I am getting ready to go to work today but am feeling very nervous and scared in case it happens again (last time a work colleague had to take me home).  I always get a very high pulse rate, over 100 per min.  This morning I took my blood pressure and it was high 150/99 I am on a 5mg tablet a day for high BP so am wondering if I need to make an appointment with my GP to see whether my dizziness could be due to my high BP and whether I may need to increase my dosage. 

Hi Carina, i have had some vague dizzy feelings this week, where i can feel slight spins coming on but they pass.  I'm wondering if it's the cold weather but obviously just clutching at straws.  Hope you feel better soon.

Hi Anne ,hope you had good holiday,more new names hitting the Dizzy sites ,plus the tinnitus sites as well ,gotta keep wondering why .Things never seem to get any better for everyone 

   I've had private thyroid antibodies done they came back elevated ( thyroid Peroxidase ) Dr then had thyroid done again on NHS ,came back okay ,so I'm at an all time loss .Whilst I had that antibodies done ,I had food one done ,that came back to Wheat ,Barley ,egg whites,Cows milk ,Soy and few more ,just waiting to start on Kifer for a month ,just wish I knew what's the cause to Mdds. So this has all gone on in the past month .

    Will ask if I can get on that med your on ,see if my balance will get any improvement .xx

Hi Marlene

are you allergic to wheat barley egg whites and cows milk, soy and a few more, maybe eliminating them will help if you are.  Nortriptyline is for pain relief for migraines so don't know if that's what your problem is and i think you have to have it prescribed by a consultant but hope you get some good news. One of the younger girls in our office today told me when she woke up last week and sat upright the whole room was spinning but it has all eased off since and thinks it might be due to an ear infection or something.  There's a lot of it about and i wonder if it is more in the winter than the summer.

take care.  xx

Hi ,yes Anne came back really high to all of them ,I did cut gluten out for a month a while back ,but not the rest ,which I didn't know about .So got it all on paper ,So the gluten exclusion wasent going to be it on its own .Ive now got on to Kifer ( goat spin off )waiting a month supply delivery ,my daughter has me onto that ,see if sinuses and Ecezema improves ,Consultant was concerned to the Ecezema what 3 yrs ago now ,enough to E mail my Dr about it .The Kifer ,you drink a 1/3 rd of it a day for I think 21 days ,say it works on the gut ,good for Asthmatics to ,again allergy related Anne . 

    Like husband and daughter says ,I've tried most things to getting back to some sort of Normality ,husband says "can't fault you on what you've done so far " So private has given me answers to foods ,now onto the next ,Im okay with meat ,fish all veg so won't starve Anne .

   When my tinnitus is low ,but then goes inwards ,they say on a site Im on its silent migraines ,no wonder why I hate tinnitus low or high all these past 10 yrs .So will ask for a try to that med Anne .wonder if this has given me all the BP trouble ? 

    Hope the girl you mentioned gets better from her giddy spell ,yes I can be hopefully an ear infection ,that time of year ,head and ear colds about ,don't take much to set stuff off ,as we all know full well .

    No sign of Darren for months ,hope he's okay out there .

think it's an all year round thing ,from what I read here and elsewhere ,people just go to bed fine ,then get up with this balance and tinnitus Anne ,but lots mention they've had neck aches .Weird all of this for sure .

   Glad your still going on work front ,as long as you feel safe driving ,that should be fair enough for DVLA ,and your drs happy about it of course .

    We're get there eventually .xxx

Thanks Marlene but still waiting to hear back from DVLA, got a letter from them this week saying they are writing to my GP.  It's taking a long time!

The colleague at work who woke up spinning said I can't believe you've managed with this for so long as she said it was awful just having it for one morning.  Bless her.

Got my neck problem/shoulder pain back, think it's the cold weather.

Your husbands right about you trying everything, we must not get beaten down by it all. 

My tinnitus was high pitch for months during end of summer, but seems to have quietened down a bit last couple of weeks.

You're right, went to bed one night reasonably normal, woke up with the world in a spin and now 2 years later still comes and goes but much improved, so maybe brain is compensating slowly and the change in diet also maybe helps. Still sometimes think it's my neck/spine causing all the problems but want a rest from any further investigations at the moment otherwise this whole thing becomes a career of seeing GP/consultant, different meds, ongoing merrygoround.  I don't mention it at work anymore cos' of the driving situation and i really don't want to draw attention to myself, although i would take time off work if i wasn't safe to drive as i've had to do on 2 occasions in 2 years when it was at its worst.

If you are having tinnitus due to silent migraines then of course you should get that looked into.  I know mine was due to a head injury but i still think it may have led to silent migraines all these years later as it left me partially deaf with tinnitus immediately after that injury.

As you say, with this amount of determination, we will get there or somewhere, eventually

 

Hi Anne,

I am seeing some improvement now that the colder days are here. Coincidental? Maybe. But if I recall, the last time I had an episode of dizziness was in the summer a couple of years ago. Not to this extent, but enough to avoid malls.

Re your driver's licence. Mine was suspended in September and was told by my neurologist that he would complete/send in the paperwork in 3 months or else the Ministry would not consider reviewing. Were you in a similar situation. I'm in Canada.

Thanks Anne.

Hi Marie

sorry to hear your licence was suspended, are you going to get it back. 

I am dealing with our Driving Authority here in England at the moment and answering how this condition affects my driving. 

I hope it gets better for all of us.

Best wishes Anne. xx

Hi Anne,

My neurologist's appt is in early Jan. and will not send in papers until then. Until that time, he has said to not exert myself, avoid anything that might spur on another attack as if I have another seizure and doctors get wind of it, game is pretty much over. It will be very difficult for me to regain my licence and if I do, car insurance may not insure me. So I am walking on eggshells.

Good luck with your Driving Authority.

Take care  xo

I might add that what is so frustrating about this is that I visited our hospital a couple of times and basically pleaded with them to help me with the excruciating head & neck pain, nausea, dizziness which I had for 3 months, and the best they could come up with was stress. On the last visit, I had by then lost 10 pounds, had not eaten solids for a month. No wonder I had a passed out and had a seizure. I knew I was going dowhnhill fast but no one seemed to take it seriously. CT, MRI, EEG all were clear, yet they still won't give licence back. It is not like I am unresponsible and will get behind a wheel. Actually, when I feel dizzy, there is no way I can get in a car. Oh well, may have been a good thing to pass out there, got their attention but not in the best way...lol.

Marie, sorry you've had such a rough time.  I get the neck and shoulder pain also and think it is related to this condition.  When i'm not in pain the dizziness is barely there if not completely gone, but when the pain is there i am back to the dizziness, there are articles on this pain causing dizziness on the web.

Have they said when you can get your licence back.?

Hope things improve.  Best wishes.  Anne.

Hi Anne,

once the neurologist sends in the papers, the Ministry will review his report and then will be requesting family dr report. From what I understand is that it could easily take an extra month from the time they receive all papers and review my situation. So I could be looking at February or early March. And to add more insult is that I have to pay the Ministry to reinstate my licence. So this could be 6 months with no licence and as I mentioned before, for me, no licence-no job=no $. I saved some $ for a rainy day and wasn't expecting a storm to hit   This decision should not have been made in the ER dept, but with my family doctor who knows my full health history. And to make matters worse, my poor mom needs help and I can't even get to her to help her on a regular basis. I will be happy when this is over.

Thank you for your best wishes Anne. 

I'm so sorry Marie, it is such  a lot off added stress which obviously only makes this condition worse.  I really hope you can get your licence back as you feel even worse not being able to help your mum.  I would be in the same position with my mum, who is in a care home, as i wouldn't be able to visit easily.

Hang in there.  This too shall pass.  Best wishes.  Anne.

Thank you for your best wishes and I too, wish you well.