Thanks Danni, glad to hear you haven’t had any side effects from the Propranolol either! I’d be okay if it makes me tired as long as I can fall asleep (I get dizzier lying down and if it’s too bad I can’t sleep) but sometimes medicines that make me tired give me this groggy/dizzy feeling. That is definitely something I don’t want. I also start medicines usually by quarter tablets. I did that with Amitriptyline, so started with 2.5 mg, and couldn’t even tolerate that after a few days. I will probably start the Propranolol on a half tablet since the full 10 mg tab is such a low dose to begin with anyway.
@turnitaround - I definitely still walk if I feel off balanced, since that’s just about all the time. My problem comes when I feel so off balanced that my shoulder drops and I walk crooked, or that I stumble around because I have no balance. Without things to hold on to I would fall over (yes it gets that bad)
Interesting about the “slowed down” feeling of the Propranolol, hopefully that won’t happen for me, but in my case it may still be worth it if it helps.
Gosh, that’s really off balance. People can’t tell I’m dizzy as it doesn’t affect my gait. It’s a shame you couldn’t take Amitriptyline as its a vestibular suppressant so very effective at controlling dizziness. I went from almost not feeling the hardness of the ground beneath my feet to getting that reassurance back once I got up to 20mg.
yes it is VERY off balance. I didn’t have the issue where it was that bad and noticeable until maybe the last 4-5 months or so. I am on Xanax which is considered to be a vestibular suppressant. It used to work fairly well but doesn’t anymore. I am still open to trying the Amitriptyline again but I have a new neurologist and she seems to want to try other meds first that I may have an easier time getting on.
Oh gosh poor you. I hope you can still get exercise, that’s very important for your physical and mental health.
Here’s an update, sorry it took me so long. I took the Propranolol finally on Sept 11, and definitely felt the decreased heart rate and sluggishness after about 1 hr. But it also made me feel so disconnected from my head (and ground) to walk around, spinning dizzy, and all night after everything else wore off the 2nd worst headache of my life (different from any migraine in severity and position in head) wouldn’t go away. So I decided I wasn’t suffering through that headache again. It was almost as bad as the headache that sent me to the ER back in July from the antibiotic called Cipro.
My neurologist has now recommended I try “Migravent,” a supplement cocktail of butterbur, Riboflavin (vitamin B2), CoQ10, and magnesium. Am starting very slowly as I seem to be so sensitive to everything. I think I have tried Magnesium in the past as I have a bottle in my cupboard, but I don’t remember how I did on it. It must not have been too bad since I don’t remember, but there seem to be a good amount of tabs left. Who knows. Fingers crossed!!
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I am the same as you, walking around as if drunk and incredibly sensitive to medication. As an example I started nortriptyline 3 weeks ago and halved the tiny tablet so I take 5mg a day. That has helped me enormously but on Saturday night I didn’t exactly halve the tablet as it is fiddly and ended up with 7.5mg as a result. Well yesterday I felt really off and bad tempered which is very unlike me so last night I only took the 2.5mg left from the previous night and am fine again today. All the side effects of nortriptyline are what I suffer from without
It so I think that is why it works for me in a small dose, treating like with like as in homeopathy. That is my take on the situation anyway.
I hope you have a similar good match soon too.
Take care. M
They really should do 5mg tablets for Nori and Ami given how much these medicines are used for vestibular issues at much lower dosage than their old mainstream use for depression.
I agree with that as it is incredibly difficult cutting such tiny tablets!
Yeah they are tiny!!
Hi Jess, I’m another 24/7 dizzy barely functioning person. Started for me back in April this year 2017 never gone away. Started with a muffled stereo blown sounds in left ear. Doing dishes was extra loud and other people talking at times. Then the crackling in ear stopped got sick and here I am. It’s like I got hit by a truck but look ok on the outside. I don’t drive, work, or go many places. Ive got a large family of kids to. This is a tragedy. I’ve gotten 5-7 really bad vertigo attacks on top of the daily dizzy. I to don’t like trying medicines as the side effects may be worse. I tried Zonegran one night I thought the worst really. When it says you can kill you self on these pills really why does it say that? How scary for anyone. It passed in a few hours.
The only one that can help you get through this is going to take it to another level. I won’t be to religious about it but Jesus is the answer.
I’ve been to 7 doctors no one has agreed to any diagnosis. Mri blood work etc…
I’ve tried antibiotics, antivirals, steroids, antidepressants, antiseizures, antihistamines, antivert, all kinds of herbs vitamins Valium etc… the cabinet is full. I get nervous every time I take a pill. But I weigh in my mind if I don’t try this what I would miss out on.
Focusing on the stuff I can do. The medicine dosage in my opinion is high. It’s based on a weight of maybe 150 man. The do weight dosage for children why do they stop for adults? If I can break that pill I do.
I hope it comforts you that your not the only one home bound.
@jap4jesus I’m so sorry to hear you are also house bound. As much as misery loves company, I could never wish this upon anyone. I’m sorry you haven’t found a medicine that works. For me, I haven’t been able to stay on any of them (except Zoloft which did nothing to help me) long enough to see if they could even help, thanks to side effects. But that needs to change: (and I completely agree with you on the dosages, I need a children’s dose! For Lexapro, for example, my psychiatrist knows how sensitive I am and wants me to cut a 5 mg tablet into quarters to start, so only 1.25 mg. It’s insane but I still feel that small amount in my system.
This entire month of October I haven’t been able to get out to be a passenger in a car at all. I’ve had to reschedule a doctor appt 3 times, and the next appt is this Friday and I have my doubts. But, I need to get to this doctor as I need to finalize my next plan of action. They want me to try Lexapro, and I’ve already tried it twice but only lasted 1 day each time on it. The first time was due to nausea and the 2nd time was an extreme 24 hour panic attack followed by contracting a flu-like virus (the virus not related but I knew I couldn’t handle a new medicine with the flu). This time they want me to take two different meds for the nausea, but the timing is off from what my psychiatrist wants me to do with starting at low Lexapro doses and with what my GI doc suggested for 2 weeks of a stomach med, so I need help with a plan that will work. Anyway, the other option is Amitriptyline, which many people here have success with, but I’ve tried it 3 times (only lasted 2 days each time) due to being much dizzier.
Right now though I have gotten even worse than feeling off balance and unable to be in a car this past week. Now I’m struggling to make it from the bed to the sofa to the bathroom, etc. I feel motion sick when I get up, I’ve had a horrible headache that Aleve doesn’t seem to be touching. The only difference from my normal attacks is that I’ve noticed constant ear and jaw pain and muffled hearing. Usually my rough spells don’t last this long and at least improve after the first week or so, but this one is getting worse and worse. I also have extreme pain on the back of my head and neck that feels like it’s contributing to a fuzzy/nauseated head. I’m barely making it through, and I’m so scared that I will continue to get worse.
I’m between neurologists and don’t even really have a doctor who’s knowledgeable enough on dizziness and migraine to help me right now. I keep waiting for the rough spell to be over as mine have always gotten back to a “baseline” of dizziness, but this one seems different and isn’t budging or acting normal. Thanks for listening to my rant, I’m the most scared I’ve been from this condition after 6.5 years of fighting it.
@Jess09 I have been there. I had a 21 day migraine which did not respond to Advil or Tylenol. Back of my head and neck were sore. A vibration feeling inside my head with tinnitus and dizziness and tilting and what not…You will feel better once you find the right meds. In the meantime have you tried taking magnesium, it did wonders for me. But it takes a while for it to start seeing effects. The migraine lifted on the 5th day of nortriptyline. Initially the drugs made me dizzier before i got better. So i request you to somehow stay on them for a week so you can make some sense between side effects and the migraine acting up.
@GetBetter Yeah I understand trying to stay on the meds longer, that is my goal for this next time around. In the past I just couldn’t handle the side effects. When I feel something I’ve never felt before after I have taken a new medicine I don’t think of it as a part of my migraine but clearly something the medicine induced.
I have a bottle of magnesium glycinate but haven’t tried it yet. For awhile I had a sensitive stomach and my doctors told me not to try that yet, and now I have a med trial approaching, but I’d like to at some point when I can fit it in. The doctors don’t want me taking more than one new thing at a time since I’m so sensitive and so we know what works/what doesn’t.
I realize this is different for everyone but when you said the meds made you dizzier at first do you mean dizzier than even your worst days or just as dizzy as your worst days? My other problem is at this point I know I can’t handle being any dizzier than my worst days from the past 2 weeks.
I dont get dizzy anymore and I don’t take any medication at the moment. However what I still get is positional vertigo and HORRID fluctuating imbalance. Can any med reduce imbalance?!
@turnitaround Xanax or benzos help a little for balance but I don’t recommend starting or taking regularly! There better be a medicine to reduce imbalance. To me, feeling tilted/imbalanced is a part of the many sensations I get making up the “dizziness.”
I spontaneously stopped (or at least 90% reduced) getting “dizzy” as in the sensation of spinning, before i took any meds, but continued getting various horrible weird imbalance issues along with really weird head symptoms until i started on pizotifen, which has reduced all symptoms a lot. some days i was getting ‘mal d’embarqument’ kind of sea sickness/rocking for an hour or two, then it would stop, then start again. other days, just a sense that everything was moving (kind of like when you are in a plane that is turning in the sky and you feel something ‘odd’ but can’t put your finger on what it is. and sometimes like walking on a road that was tipping up and down like in a funhouse.
if it’s migraine/brain function based then one of the neuro meds should help - i know you’ve tried amatrip. have you tried anything else?
if it is peripheral (i.e. a physical ear problem) then only a medication that dulls or heals the peripheral system will work.
are you in the UK? I know you think it’s inner ear problem, but have you see Dr Surenthiran? if you are in the UK i would suggest you do, as he will tell you if it’s migraine-caused or not. if he says it is - try what he says, you’ve got nothing to lose. if it works, he’s probably right. if he says it’s not - well it corroborates your theory.
Dr S threw out the case notes from 2 other ENT ‘specialists’ i had seen, who had diagnosed a viral infection, and were dosing me with anti-virals which just seemed to make me worse. Dr S looked at the case history and said, 100% certain it’s not a virus. it’s migraine.
if you also have positional vertigo, have you had that looked at in itself - and any particular diagnosis?
Oh it’s definitely NOT viral. That’s old fashioned BS. I also passionately believe the central only argument is mostly BS too but perhaps it’s at least half the story. In my view this condition is a combination of a varying level of inner ear issue plus significant neurological knock on effects. What is the inner ear issue? Almost certainly Hydrops as shown in that 2013 paper I shared. Hydrops can be asymptomatic wrt to hearing and varies in degree. So lack of auditory ear symptoms is no proof the ear is not involved.
I ABSOLUTELY have a migraine problem now because for example a chocolate brownie is guaranteed to cause me ‘migraine rumbles’ (but no migraine). This never happened before my ear injury. For all of my life I’ve been able to eat what I liked. So Dr. S is spot on with his diet. And to be honest his treatment plan is probably a very good place to start further research into why this diet helps. If you look at Alec Salts research on inner ear homeostasis you will notice that Potassium level likely affects endolymph volume (which is 75% potassium ions. Not very surprising really!!) And guess what? All of the restricted foods are high in potassium!
However my chocolate brownie affects me so very quickly it’s hard to believe it gets digested and processed through the blood and osmotic barriers so fast. I feel the effects within a minute or two. But there is no doubt it upsets my system.
The ‘final straw’ was when my current oto-neuro gave me a diagnosis of ‘Secondary Hydrops’ and informed me that sufferers of this condition find their symptoms worsen with ‘chocolate, some cheeses and red wine’!!! Implying that essentially SEH = MAV.
It also makes sense to me that it’s a lot easier to injure your ear than your brain which helps to explain the onset of MAV. You only need a perilymph leak from an inner window over a period of time to develop Hydrops in the ear. And the oval window is particularly vulnerable because it’s both incredibly thin and connected indirectly physically to outside world by the chain of little middle ear bones so transfer of pressure and force is fairly straightforward.
I would go further and hypothesise that it’s very possible many vanilla migraine sufferers have ear trouble. Or perhaps some have eye trouble. In any case probably root cause is bad sensory stability. Sensory instability has been written about as a likely cause of migraine.
I would definitely consider seeing Dr S even though we might disagree on hypothesis. My main reason for not seeing him would simply be that his protocol is in the public domain so I pretty much know what I should be doing to get better. That now goes for most doctors. This site has a lot to do with that.
Let me play a devil’s advocate here. In defense of all the docs who treat “Vestibular migraine” they see a set of chronic dizzy patients who get better on prophylactics. They need to call this trend something as with migraine preventatives some patients get to 90%. Along with diet some even get to 100%. I agree not everything is understood and we are firing in the dark but we have substantial evidence in this forum that migraine treatment works !
Also i second you that NOT all is central. I know for a fact something is wrong with my ear. I have tinnitus 90% of the time. I also have pain and crawling sensation in my ear. I received a VN diagnosis which i agree is BS. If it was VN i should be normal right now which i am not.
If you take the MAV=SEH hyopthesis i think doctors might not accept it readily. My neuro said the MAV diet and SEH diet look similar but the underlying condition ain’t the same. With SEH you are going to feel the dizziness and the migraine meds wont touch it. The hard part is SEH can trigger migraines and meds address only the migraine part and some people still feel dizzy.
I am sure everyone who gets treatments from neuro or neuro-oto or ENT knows how difficult it is to convince them of something. Even if you did convince them there is only so much they can do. If you request they WILL write you a diuretic. If you request they WILL write you migraine meds of your choice. Or switch doctors and find one who WILL write you what you want. In the end we are the advocates of our own treatments !! Sad but true.
Sure, I get it.
I’m happy that this condition has a special category, though not completely sure what happened to “Secondary Hydrops” as I don’t see anyone getting this diagnosis anymore on the online forums, that’s what made me suspicious.
I definitely recognise the efficacy of the meds AND the diet and have seen big improvements myself on those things.
What worries me is that if we keep calling it a ‘migraine’ condition less will get done to address what might be a hidden root cause (the migraine after all, is rather, perhaps too, obvious!) and throwing all these meds down are throats isn’t cost free, especially long term.
Also I don’t like being taken for a fool. The trigger for my condition was extremely obvious to me and it does bother me when a doctor dismisses it and says “oh no it’s just migraine”. I simply lose confidence in that doctor …