The Vestibular Migraine Community

Help! Any advice on how to get over fear of starting new meds?


#1

I am supposed to start Propranolol under a new neurologist. Very slowly, 10 mg once a day to start (and I may even do a trial of 5 mg the first time). I have had the prescription for a week and a half and cannot bring myself to take it. I had 2 “better” days and didn’t want to ruin them, and then I went straight into a string of the worst dizzy days I’ve had to date (after battling MAV for 5 and a half years) and can’t seem to get much better. It’s all I can do to walk around the apartment, eat, and get a shower for the day, so why would I add side effects to that struggle?

Also, when I first got all these symptoms I started a med, I don’t even remember, Verapamil maybe, that made my heart race and kept me awake for hours (I was told to take it at bedtime). I have also tried Nortriptyline which I couldn’t tolerate. I tried to get on Amitriptyline 3 times but felt worse each time and stopped. Every medicine I seem to try makes me worse and this of course has added to the anxiety. The only medicine that has helped me so far is Xanax, but I stopped it and tried to taper off Benzos with Librium, and then went back on Xanax and it doesn’t work like it used to.

Anyway, I am seeing a therapist, have tried 4 so far to find the right “fit,” and none of them have had any suggestions or any way to help me with my fear of medicines and side effects (or just feeling my current symptoms gets worse) other than to write down my symptoms and see which ones I think are from the meds.

I know I need to try new meds to get my life back, but even that doesn’t seem to be a strong enough motivator for me.

Does anyone have any ideas, things to try, things to think about, etc., to help? Thanks!


#2

One thing to think about is the fact that most of the prescribed meds have been used for years and years so have a long history. They are unlikely to do any lasting changes to your body.

Another thing to think about is the benefit you will get versus the risks - your psychological state on meds will probably improved amazingly - i know mine did and within days. That is worth the downside risk of adverse side effects any day.

Lastly, the doses prescribed for this condition are sometimes 50 to 80% less than those prescribed for some other conditions, so you will be on a low low dose generally, reducing the risk and intensity of side effects.

Its not all a bed of roses, you may get some strange side effects (and indeed I did not take to Propranolol at all!) but eventually these will either go away or you habituate to them, or you move to a med you have a better response to.


#3

Thank you for your reassuring words. I know it’s all true. I guess I’m really having hard time because I haven’t seen any benefits from any meds in YEARS! I also forgot to mention I am on 100 mg of Gabapentin (Neurotin) at night, and when my doctor wanted me to increase the dose by taking another 100 mg in the AM I couldn’t handle it, was dizzier than ever, got blurred vision and exhaustion. There was another medicine not typical for MAV, Mertazapine, which I started to tolerate but then got worse after 6 days. Another wasted week of feeling worse with no benefit. I’ve been through so much, like we all have on here.

If you don’t mind me asking, what problems did you have with the Propranolol? I know it can add more acid to the stomach, sort of like any NSAID, and I have trouble taking NSAIDs more than 2 days in a row. Sigh.


#4

I don’t want to suggest you will get this but I had two nasty side effects at my first and only dose level of 10mg: it really slowed my walking down and I hated that ‘limiting’ effect. Also and more freakingly I got bad chest pains within days. At this point I stopped it. However there are many on this board who have had more luck. I hope you do!


#5

thanks for telling me, I knew why you didn’t mention them since I’m so apprehensive about the med! For some reason chest pains don’t worry me as much if I don’t get dizzier. What do you mean about the slowed walking? Because of being dizzy/off balance and unable to walk? I can barely walk as it is now so that’s not much of an issue. I think I need to call my pharmacy and ask about its effects in comparison to NSAIDs on the stomach and reflux and such.


#6

Not only can I walk (if feeling imbalanced most of the time doing it) I can run and cycle. Running feels more comfortable than walking weirdly, whilst I feel NO symptoms when cycling, oddly (always a disappointing moment when getting off the bike as my imbalance returns when I start walking).

I could not take Propanalol because it literally slowed my walking down and going up stairs was made much harder. Its hard to describe but its like you have some speed limiter applied to you.

Exercise, imho and many member of this board is critical to your recovery both mentally, in terms of compensation and some believe its actually the cure to the condition (my theory is that in the long term exercise fixes your inner ear issue by jogging the debris around until it eventually disintegrates or finds a place where it causes less harm)


#7

Hi there. I hate take any medication but with this I knew I couldnt go it alone, so went for help…I was put on 160mg of propranolol and a low dosage of pregabalin. It was the best thing Ive done - in fact I regretted not seeing my GP before for help. I am now almost completely better, and looking to come off the meds. Everyone reacts in different way to different medication, so trying different ones, and different dosages may be necessary. I can understand being afraid on trying meds and their side effects -but it best not to dwell on them - some people have side effects from eating nuts !!! …that is to say, that we all react differently to medications, and most of the time the reactions are positive. Stress takes a greater toll on our bodies than most of the side effects you may be worried about and is a trigger for MAV - so think of it that stress is a side effect of the condition and the medication will remove this side effect (propranol is excellent for anxiety and stress)


#8

Even herbal tea in overdose can give you side effects :slight_smile:


#9

Hiya i too ahve a terrible fear of new meds but what i do is quarter the tablet so I’ll take a quarter for a few days and if all ok take a half and so on.Im on propranolol and havent had any noticeable side effects apart from beibg tired but im also on pizotifen and that coudl be that x


#10

Thank you Rupes, I am glad to hear of yet another person without side effects from the Propranolol. Yes, I know side effects can be different for everyone with each medication. And I know stress and worrying about it makes it all worse too. I’ve just had issues with every single medicine I’ve tried, so I have to be super careful.


#11

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.


#12

@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.


#13

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.


#14

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.


#15

Oh gosh poor you. I hope you can still get exercise, that’s very important for your physical and mental health.


#16

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!!


#17

Hello jess09

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


#18

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.


#19

I agree with that as it is incredibly difficult cutting such tiny tablets!


#20

Yeah they are tiny!!