I took a Valium when l flew twice last year and l still fail to understand how this will help my dizziness when it returns. It won,t get rid of the dizziness, it will only make me more relaxed, which is a good thing, but it doesn’t help with the main problem. The Valium actually made me dizzy and depessed as it wore off. Sue
— End quote
Hello Sue/shezian. Valium does more than just alleviate anxiety. For some people Valium can dampen down a “storm” of excess electrical activity in the brain. In that instance the anxiety relief can be seen as a sort of side effect. Of course in excess valium will make you drowsy and that may be undesirable.
To some extent, I suspect you are right in being skeptical of Big Pharma’s motives but that does not mean all its products must be avoided. Please bear in mind that some natural remedies also have adverse side effects if taken in excess.
It’s good to know that Valium can actually help in that way.
I totally agree with you about the supplements, they can have a very negative effect, like the feverfew did for me recently. Side effects were bad rash on my arms and when l stopped after only 3 days, l went into complete meltdown, even though l felt great on them as far as MAV symptoms l developed other side effects from them. So l guess it just weighing up if the side effects are worth it.
Vic- you were saying in your last post you reach for meds when you get bad. What do you take? As my symptoms come and go, apart from the Valium, l am not aware of anything else that can be take as needed when an attack occurs? To take something each day because l get my MAV in waves seems stupid. Not to say l won,t if things change, if you know what l mean?
Valium does more than just alleviate anxiety. For some people Valium can dampen down a “storm” of excess electrical activity in the brain. In that instance the anxiety relief can be seen as a sort of side effect. Of course in excess valium will make you drowsy and that may be undesirable.
To some extent, I suspect you are right in being skeptical of Big Pharma’s motives but that does not mean all its products must be avoided. Please bear in mind that some natural remedies also have adverse side effects if taken in excess.
— End quote
First sentence - amen to that. Valium calms the raging storm without question. If they took Valium off the market - I’d go on a homicidal spree!! :shock:
From my own personal space, I dont have time or desire to try and do battle with MAV anymore than is absolutely necessary. I want my life back. I’m too busy, my life ‘to-do’ list is too long and life is too short so I refuse to have a fear of meds. It’s just not an option for me to go there. And I’ll say it again, there is no fear of a pill that could be greater than the fear of MAV.
First sentence - amen to that. Valium calms the raging storm without question. If they took Valium off the market - I’d go on a homicidal spree!! :shock:
— End quote
Benzodiazepines do a lot for me too and I use them as a valuable rescue drug. I find valium (diazepam) a bit too mild and I don’t want to take a lot because it lasts so long. So instead I take half a benzodiazepine sleeping tablet during the day. I take either lormetazepam or loprazolam which work within 30 minutes but fade away after a few hours.
By the way, I don’t know where you used to be in East London/Essex but some of the docs I saw about my one-sided hearing loss were Dr Kenyon and Dr Papesch in Buckhurst Hill. Ever come across either of them?
Vic- you were saying in your last post you reach for meds when you get bad. What do you take? As my symptoms come and go, apart from the Valium, l am not aware of anything else that can be take as needed when an attack occurs? To take something each day because l get my MAV in waves seems stupid. Not to say l won,t if things change, if you know what l mean?
Sue
— End quote
Hey Sue,
I probably didn’t express myself very well. I wasn’t talking exclusively about migraine when I said I reach for the medicine cabinet. I mean anything - for example - I’ll tolerate a headache (not migraine) for a while and if it doesn’t pass, I’ll take some aspirin. I had hives last year - went a couple of weeks actually hoping it would settle before going to the doctor then hitting the anti histamines and steroid creams hard.
In relation to migraine - if I’m having a ‘stand alone’ migraine (i.e. not chronic) abortives don’t work for me. I just have to lie down and wait for the storm to pass.
For low level migraine activity I’ll try and ride it out but if after a few hours things aren’t resolving I’ll take Valium. Or if I’m having intermittent, annoying but managable symptoms I’ll ride it out, but there’s a point at which the frequency and/or intensity becomes too severe I’ll look to a preventative. Prothiaden (supplemented by occasional Valium) worked very well for me before but not this time round. I’m currently in the process of tapering off it before starting Periactin.
What is distressing is symptoms which don’t respond to any meds (for me anyway) - that’s scintillating scotoma (mercifully it only lasts for 20-30 minutes then followed by several knocked out/hung over hours) and rotational vertigo (which can last for several hours and is completely debilitating).
By the way, I don’t know where you used to be in East London/Essex but some of the docs I saw about my one-sided hearing loss were Dr Kenyon and Dr Papesch in Buckhurst Hill. Ever come across either of them?
— End quote
You’re in Buckhurst Hill???!!! My God, I’m from Loughton!!! RA!!! Obviously now in NZ, but all the family still in Loughton and I’m going home for 2 weeks at Easter. Good to meet you neighbour!
Yes I know Dr Kenyon. He is the ENT at Holly House Hospital. He was the first doc I saw and ordered my MRI. He is very nice but has no understanding of MAV. I then saw Rodney Walker at St Margaret’s in Epping. Try and see him. He is quite clued up on the whole migraine thing and was the first doc that said to me that he thought it was migraine but that it comes in flurries and will settle. Obviously mine didnt and I ended up going under Dr Surenthiran at Medway Maritime in Kent. Get in with him too.
Sue
Benzodiazepines is the general name for a group of meds. In these meds are diazepam (Valium), lorazepam (Ativan), clonazepam (Klonopin), alprazolam (Xanax), temazepan (Restoril) and so on… but they would all be prescription based unless, as Vic says, you’re in Asia and like me, bought a LORRY LOAD to add to my arsenal.
Just not familiar with the meds yet. Getting head around it all.
Thanks for the info guys.
Will stick with Valium when needed for now and my b2 and assess as l go. Not sure if l should try the other ones, sleeping tablet kind?? Valium does stay with me for a couple of days which can be a good and bad thing.
You’re in Buckhurst Hill???!!! My God, I’m from Loughton!!! RA!!! Obviously now in NZ, but all the family still in Loughton and I’m going home for 2 weeks at Easter. Good to meet you neighbour!
— End quote
Hi Muppo, what a small world. I used to live near Buckhurst Hill but had to move away a couple of years ago to stay with my family because my illness had become so severe. Currently I’m trying to get a proper diagnosis. I really like that part of London/Essex and would like to move back if my health improves.
— Begin quote from “Muppo”
Yes I know Dr Kenyon. He is the ENT at Holly House Hospital. He was the first doc I saw and ordered my MRI. He is very nice but has no understanding of MAV.
— End quote
I also saw Dr Kenyon at Holly House! It was over 10 years ago. At that time I wasn’t experiencing a lot of dizziness so he looked at my inexplicable one-sided hearing loss and distortion. After he couldn’t work it out he passed me on on to see some docs in Harley Street. I ended up with a neuro-otolgist called Jonathon Hazelle but it was all very inconclusive and he majored on retrained the ear to perceive sound differently. Anyway once the distorted sounds I was hearing in the bad ear settled down, I didn’t pursue it further.
A few years later I started getting bouts of minor dizziness and confusion and saw a neurologist at the Roding Hospital. He thought I was getting tension headache but couldn’t explain the weird feelings I got in my head, so he referred me to yet another ENT doc called Papesch. Again the dizziness wasn’t a major symptom back them. I thought I was kind of okay and left it like that.
Then my health plummeted and everyone thought my aches, pains, dizziness, confusion, head sensations were all due to a psychiatric problem and that’s how it was being treated for a few years but unsuccessfully. Finally I became so ill that I had to move away from the area and stay with my family in another part of the country. There the docs diagnosed some degenerative brain disease with inexplicable fluctuations. When I asked for a second opinion I got referred to to the National Hospital for Neurology in Central London who are for the first time starting to look into this more. The doc I see there is an expert on degenerative brain conditions but he won’t do private work so it’s been painfully slow to get to see much of him. He doesn’t think my condition is degenerative so he is co-ordinating which of his colleagues I need to see next. Frustratingly I daren’t go private because I won’t get a multi-disciplinary team to look at my various symptoms because it seems there may be more than one illness.
well the placebo effect is of course not no effect
it should be called the meaning response and it is often very powerful.
that said, having read the literature closely, I would say that this cbs story is spot on.
I am just now reading this thread and thought it was a great one because I have always been against using drugs and believed that eating the right foods, drinking tons of water, getting good sleep, feeding the soul, being positive can cure anything and for me, it always has!!! Than…I got this fricken chronic illness called MAV!!! And nothing has killed it yet. Now…I am like “give me the DRUGS”!!! I’ll take just about anything at this point to have my life back. I am only on my first med and it seemed to be working unil I started taking a so called natural vitamin B2. Well let me tell you that B2 messed me up and my drug stopped working. So I said hek with the b2 and stopped it pretty quickly.
Now, I am waiting for my dr to give me another drug. I can’t imagine any drug being worse than the hell I have been in since November of 2011. I went from being a fun loving, positive and very active person to now a person who is pretty much home bound, cant drive, can’t do much because the 24/7 dizziness, nausea, ear pressure, bowling ball head, extreme motion intolerance etc etc is disabling me from my life. DRUGs, I say, bring them on. I’m determined to get my life back and if that means prescription drugs, than get them in my system ASAP.
Trust me, I wish I didn’t have to resort to meds, but I’ve Tried everything else or just about.
being anti-meds is pointless and there really should be no stand on it for or against. I’d rather not have to swallow a pill daily either but it’s about quality of life and if a med can restore that when other methods fail then that’s the logical next step. It’s a no-brainer.
The idea that “natural” means safe and no side effects is complete bull and delusional. Unfortuantely it’s swallowed by the masses and advertising takes full advantage of that.
Sorry to hear the first med appears to have pooped out and the B2 derailed your otherwise smooth ride out of this. Hope to read that you’re back on track soon.
Thanks Scott! I agree. I joined this forum at end of Feburary when I was diagnosed and have read a lot of your posts and really enjoy them. And I wanted to officially thank you for creating this forum because before I found this forum, I truly believed that I was the only one going through this and that was a very lonely place to be. What you have provided here is a Godsend!!!
You seem to have a great deal of knowledge about Drugs so I wanted to ask you your thoughts on 2 things:
have you heard of Imipramine and it’s effectiveness on MAV? I rarely get the headaches, just every other symptom and this is the first drug my MAV dr put me on (Dr Terry Fife)
imipramine is a Tricyclic AD and when I was on webmd, I went to look up B2 and under “interactions”, it said B2 interacts with Tricyclic ADs. Do you know anything about that? Any thoughts? Because as soon as I started b2, everything went downhill fast. Coincidence? Who knows!
Anyway, thanks again. And I love Australia. Been to Perth several times. My son is half Aussie!! By the way, how’s the Milo treating you.
