I hope everyone is well I had a bit of a wobble on the weekend and was kinda looking for some positivity and reassurance .
I know I have Vm but I feel like I am failing the medication I’ve tried and I wondered if this is common? I read people taking 5/10mg of ami and they have they’re life back . I’m up to 50mg of prothaiden / dosulepin and not feeling much. I have my phone call with dr s this week but I can’t help but have this fear I’m a rare case as it seems most respond well to their first med.
I guess what I’m looking for is some reassurance that this has happened to someone else , I am also aware I am still able to higher on this med and I do aim to get to 75/100 before giving up. But how long g should each dose take to work? My worst symptoms atm is this feeling of being in a dream and like I’m stuck in a fish bowl watching the world go by . I think is this symptoms went away I could hack the other stuff ok
Anyways thanks for listening this group hAs made me feel far less alone
Nope, for many sufferers it’s the ole ‘med crapshoot’. Some members even have to ‘double up’ to get optimal relief.
I consider myself lucky for getting on well with Ami, despite failing Propanolol initially.
Perhaps you’ll be luckier with the next one.
Also be careful of the following:
- No drug is a silver bullet, you will still get symptoms and relapses whatever you take most likely, but the meds make things much more manageable
- Confirmation bias: you mistake a relapse for a drug failure. This is so difficult to distinguish, you just have to persevere to see if the relapse passes.
(Confirmation bias can go the other way too: people think the drugs have made them better whereas of course it could simply be your body healing)
Also if you are not doing so already, I’d go really easy on exercise for a while and keep things lightweight.
@turnitaround thanks so much for the reply James , I feel like a scared child so appreciate any reassurance . I just can’t fathom how in the past I had such light episodes And now it’s like a different story .
I personally think with time I’ve inproved rather than any med as I simply haven’t been on anything long enough, I totally agree with what you say about drugs making symptoms more manageable , and that’s all I want really . The surrral spaced out feeling and odd head sensation makes life pretty hard so if that could decrease I could manage .
I guess I’m nervous because I’ve actually met in real life 2 people who Responded to their first med and not on a high dose . So it worries me the same isn’t happening for me and makes me feel unlucky hence why I wondered what the norm is
Could I ask did you fail proprananol or just could t get to a higher dose? Dr s isn’t a fan of prop for this condition so he was reluctant for me to go higher I only took it to keep my heart from racing .
Basically, I found my quality of life was so much worse on Propanolol at a low dose - I couldn’t even walk up the local canal towpath (my favourite peaceful MAV escape) without feeling like an 80yr old with a heart & lung condition (that’s how it felt). I then had a minor panic attack when I started to get chest pains. So I chose to give up Prop and move on (in agreement with my oto-neuro). I was lucky Ami was so effective for me (and within 4 days!! but this is very personal, I was lucky). Of course I respect Prop can really help some people.
So if you’ve felt you’ve given it a good go, have no shame in trying something else.
This is a difficult phase of coping, Amy, but things will get much much easier once you work out a regime that works for you! So know it will get much better!
Thanks so much James , oh yeah prop slowed me down loads but it wore off but my aim is to come off it if dosulepin works and my heart stays ok. Oddly enough Amitriptyline got rid of all my rocking within 6 days but it gave me a huge mav attacks so I stopped after 10days so didn’t give it a fair go but gave nort 3 months and now on dosulepin so if the trycilics don’t work it will be on to another .
Thanks for all your help really do appreciate it
that sounds like confirmation bias … imho I don’t believe Ami can give you MAV attacks … it just might have been an unfortunate co-incidence - that’s a real danger during med trials. For me it did the complete opposite - I was going through a phase of having an attack every three days (lying in bed unable to move even my eyelids (!!!) for 14 hours at a stretch). As soon as I started taking Ami these stopped (but again that could also have been coincidence, I admit!)
No bother at all … I went through this early phase of my illness and I know it can be hell on earth at times. Those days have thankfully long gone for me and I don’t miss them! You will get there too!
I 100% agree it was in the early days and my attacks were so bad I was bed bound with them couldn’t stand or see truly terrifying. I am no where near like that now so I know even if very symptomatic things have got better . But it scared me so much I stopped them what I the. Found out is yes it was probably a coincidence .
However medication. Can make you worse before better so there is also that .
I can imagine once your recovered you probably forget how bad everything felt so it’s even reassuring to hear you say that : ) I’m sure I’ll get there just nice to hear advice and reassurance from people who have been there
Verapamil was my second med after Paxil which was a failure and took me in the wrong direction for about 6 months. In hindsight, I think I blamed Paxil for a lot of things that were just VM, but still it was an awful med for my VM. I’m now up to 360mg Verapamil, it definitely helps but it isn’t like a silver bullet at all, still needed to make life changes, follow low tyramine diet, and take the supplements. I wouldn’t say I was lucky with Verapamil, but I’m glad it helped rather than hurt. I still might try Topomax or Ami, not sure though, I think i might make it on Verapamil alone. Time will tell… so hang in there! Keep trying things including lifestyle. James suggestion on trying to reduce exercise intensity is good too. Before all this happened I could run a mile in 5 min flat, and in the beginning of VM I continued to try and train for a while. I actually was able to do some of the workouts still, but it was just too much vascular stress for the VM I think and it was just a bad idea. Now I just do some light aerobic, keeping heart rate <120 (which is easy to do now that I"m on Verapamil). I keep workouts 30-40min max. I’m planning to start training again for next summer track and field, I don’t want to get too excited of course, we’ll see how it goes. I went to a few track meets this summer to watch and almost cried because I wanted to be out there so bad (-:
@turnitaround I also had the 80 year-old-heart/lung-thing and chest pain for a while on Verapamil, but my head pressure was coming way down so I just accepted these side effects and they have mostly faded (still some weird chest tightness / asthma which is annoying).
Thanks so much for your response @ander454 I massively appreciate the help. I defibstley know drugs aren’t a cure but I guess I was expecting some more relief . It’s reassuring to know you needed a higher dose of verapamil as I think I will be someone who responds to higher doses too . Although I am training my workouts are like and don’t involve any HIIT I also don’t run or jump as it brings on flashes which is upsetting but in hoping in time this will change . I’m so sorry you were on Paxil for so long. Did it not make any positive difference ? It’s hard to know when a drug is working or not as I think I expected to see results quickly and now realise this is wrong .
I miss being as fit as I was so totally get where your coming from . I think for me I could hack most of the symptoms but feeling spaced out all the time is not easy here’s hoping an increase helps this symptoms .
Paxil helped a bit with anxiety, but still felt pretty awful. In hindsight I probably blamed Paxil for a lot of VM symptoms. I hope you get some success at the higher doses!
I am very interested in reassurance too. I have been on 37.5 Effexor XR for about 16 months with no new MAV problems until last Thursday when I had a 2 day bout. Always in the back of my mind I thought that I might have a breakthrough MAV someday and this was all too good to be true, but those 2 days were 2 days of hell. Can you get “used” to medication? Should I increase the dose? Should I just hope it was a fluke break-through or actively search for something else. Just a note, I am self-diagnosed, with the Effexor script coming from my family doctor. I have not seen a neurologist, but thought that since the Effexor XR was working so well, I didn’t need to pursue anything else. Help!
Well I’m not on Effexor but sounds to me as if you’ve been a success as far as MAV goes - it’s a difficult nut to crack - but you seem to have done it. The powers that be say when they don’t give you a definite diagnosis, if the migraine preventatives work, then it was MAV what you had. Medically preventatives are considered a ‘success’ if they reduce everything, frequency, intensity etc, by 50%. That’s all. They don’t expect 100%. Ut I know some plp do achieve that. Sounds like you’ve had more than that. Personally I’d say stick with it, don’t change anything at least until it happens again. Could well be a case of ‘better the devil you know’ with Effexor. It seems to suit you. Sometimes preventatives do appear to stop working. I’ve read about it happening but I’d say one ‘breakthrough’ wouldn’t prove it’s that. You could tighten the ship so to speak, check out whether you’ve become complacent about triggers, lifestyle etc but sometimes these breakthroughs just seem to ‘happen’ without reason and yes, it seems so much worse once you’ve been better does it.
As I said no personal exp of Effexor but would suggest you go to Dr Hain’s website www. dizziness-and-balance.com (link in Welcome Wiki section) and read everything he says about it. Seems it’s one of his favourites but doesn’t use it above what you are on for MAV because of possible difficulties coming off them eventually. Have a good read, do. Helen
I tried Amitriptyline first and I couldn’t tolerate it; made symptoms worse and made me feel suicidal on day 1 - so I dumped it. Fortunately med 2 pizotifen and additionally med 3 Gabapentin have helped a lot.
Keep trying and suggest to Dr S if you think it’s not working for you.
I agree with James - it does seem to be random which drugs work for whom.
BUT make sure you are doing all the right things with lifestyle, stress and diet as well. It’s probably tough for you as exessive exercise can be a major trigger, unfortunately. The drugs are only one part of the fix imho. De-stressing was the biggest one for me, aside from finding the right meds. I didn’t really start to feel better until about 3 months after I’d sold my company and chilled out.
Good luck and keep us posted…