Sorry I haven’t introduced myself properly, and please excuse any typos or not making much sense. Basically I had really bad symptoms back in 2003 and the diagnosis went from labs, VN, BPPV and finally to MAV. I was on mirtazapine for some time, about 2 years, and it did seem to help so got myself off them as it caused massive weight gain and the dizziness rocking etc went to a bearable level. Anyhow, each time I’m off the meds some form of MAV kicks in be it tinnitus, or brain twitches etc. Well 2 weeks ago I had a vertigo spin on waking during the night and from then on I’m back to internal brain motion, a rocking sensation, and really bad brain fog. I feel really awful and the computer screen intensifies this like magnets pushing and pulling really fast in my head. Overall it hasn’t been this bad for a couple of years. I feel very tired even though I get some sleep. I just didn’t want to go back on mirt as the weight gain is horrendous and that can’t be good for you either.
I used to frequent the healthborads and dizzy lounge back then so I remember some names here especially Joe and Scott my name on the h/b was Brina and Dizzylounge Rainydayy. I am going to the doc on Friday nearest they could give me. What do you think would be the best med I could ask for or maybe I should get referred back to a neuro-oto? I’m really trying not to freak out but as ever this wretched thing does get the better of me.
Any suggestions appreciated.
Best wishes to you all.
Sorry you are going through this. I know how bad it sucks, as most of us do…
I took Mirtazapine for a while, and it worked really well…then pooped out after about 1 1/2- 2months. I was only on about 5mg-7.5mg, as the full 15mg pill made me wired. I slept like a champ and my dizziness really calmed down…then
it just stopped. What dose were you on?
I think if I had to do it over again, I would try Nortriptyline. You can start low at 10mg (or 5mg) and go up to 75mg I think…for depression, the dose really can go up from there, but for migraine, it has been touted as one of the best. You have a risk of weight gain with most of the Anti-depressants, but I think it may be dose dependant to a degree.
Other than that, most meds work with the same efficacy as others, but they doctors usually try to gage what other symptoms you have going on…if you have high blood pressure, or if you are anxious…they choose meds based on what else might be happening. You could always try 2 meds if needed as well
It seems from what you have said, that you are going to need some type of med support to keep this at bay. Here’s hoping your next trial is your best.
Keep us posted!
I am so sorry your having such a bad relapse. As you know, i’ve tried numerous anti-depressants over the years with no help. The only medication that has helped me thus far is anti-anxiety med…Xanex and Verapamil. I know you said the doctors are reluctant to prescribe you this med…but you’ve been suffering with this condition for many years now so i don’t know why you can’t let you try a benzo for a change. I know alot of folks use a small amount of Klonopin…i don’t know what name they call it in the United Kingdom. Maybe there are others on this board who could recommend an anti-depressant that worked for them.
I hope your next doctor visit goes well. If you can visit a Neuro-Oto…i think that would be the best way to go. So many general or Ent doctors seem very unfamilar with this condition.
I can tell you what has worked for me. I’m on Prothiaden (my neuro’s drug of choice). It also goes by the name Dothep. I started at 25mg, up to 75mg. Things were good there for a while then started to go south again and so went up to 150mg where I am now. I am about 90-95% well 90-95% of the time. I also get great results with Valium as needed. The whole Benzo family seems (from experiences of others here) to be really, really effective. My neuro swears by Valium (says it should be in the water!) but a lot of doctors are reluctant to prescribe it for anything, let alone migraine as it’s an off label use they probably don’t even know about.
The other thing to consider is all the lifestyle modifications. There is a lot of evidence that for a substantial number of people this works really really well, without the need for meds at all, which, if you suffer nasty side effects is great. The easy stuff is keeping a regular sleep schedule, regular moderate exercise and generally maintaining a status quo (the migraine brain doesn’t like change). The diet is a bit more complex but essentially is about eating only fresh, unprocessed foods. It gets more complicated for people who have triggers within that diet as well, for example nuts or citrus. I’ve never done the diet though so can’t advise really any further.
All the docs seem to have their favourite drugs. My doc’s is Prothiaden and, lucky me, it works for me! I just did a Google search so check out this link to see all the different names it has: en.wikipedia.org/wiki/Dosulepin
One thing to remember is it’s an ‘off-label’ use for migraine, so if you’re seeing a GP (general practitioner, that is, not a specialist) they may not be aware of it as a migraine treatment.
Hi Rockyksmom,Joe and Victoria Thank you so much for your replies,
Rockyksmom, my first dose of mirt was @ 7.5 for a week then up to 15… after a few weeks i was told to go up to 30… as i felt bad with the symps i would have done anything and like u say i never slept so well in yonks, i must say at that dose the symptoms were very very gradual dulling of the internal haphazard feeling of motion swaying bouncing rocking that was relentless 24/7 and one i hated most …if you can really actually hate one more than another they’re all gross…but that one was the most severe and persistant at that time. After a couple of years and being more calm and accepting what i was left with, much milder, i came off them…since then and over the years i have had to go back on them several times with some other symptom taking precedence ie tinnitus and hyperacusis would spike up intrusively loud for months on end get me so down, the mirt eventually did the trick in breaking the cycle but by then i had gained so much weight. Took all last year practically weaning off them and lost all the weight they gave me.i will def take into consideration nortryptyline and mention to my gp tomorrow. I dont mind a little weight gain but 3 stone approx is depressing in its own right :roll:
Joe, i am going to ask gp tomorrow about the benzo’s you mention and at least get some diazepam which he reluctantly gave me a very short course ( 5 days worth) @ 5mg 3 times a day at the very start as i was in breakdown, they did give me some hope as it was the first time in a couple of months from the outset that i had some softening of the symptoms. i am going to ask him if there is a local migriane clinic as travelling into London was so stressfull but i doubt it.
Victoria, you know that is really strange you should mention Prothiaden i have actually been on that med way back in 1992, i at that time, (32 yo) had been suffering a constant feeling of nausea like morning sickess all day long for many months on end , i had to see a consultant at our local hospital who said i had depression from low serotonin levels and put me on that and also in the same time frame i started with nightmareish tinnitus very intrusive several sounds going on in both ears and hyperacusis, well what i noticed was that although proth was meant for my tum probs it actually helped me with the tinnitus also…not rid me of it but calm it down to a level i could cope with…and i did gain some weight about 7lb but i couldnt care less of it i felt so so much better…i never would have thought it could help this as well but as i was told years ago that tinnitus is related to migraine it makes sence…thank you.
Do any of you feel more dizzy rocky at the computer? in a bad phase i do, but i think its because its close as i also find reading and writing intensifies it as well, also being in small rooms…i remember telling my gp i couldnt tolerate being enclosed as it made symptoms worse and he assumed i was claustraphobic, no not the same thing at all…
You have made my day! I had given up hope that I could blame Prothiaden for my weight gain (about 6 kilos!!) since I started on it about 18 months ago. I had reluctantly settled on “gluttony” as the only excuse.
I also was on Prothiaden, but a much lower dose and only ‘as needed’ in the early 90s for depression. I was on Aropax (Paroxetine) which, especially initially, made me very, very speedy and feeling like I wanted to get in a boxing ring and fight - so the Prothiaden was meant to offset that if I couldn’t get to sleep. I didn’t put on any weight back then (but I had lost a lot from the depression already) and my lifestlye was different. I ate because I had to (fuel) rather than enjoying it and walked everywhere (no car).
Both Aropax and Prothiaden can be used off label as migraine prophylactics (my neuro’s view is that Prothiaden is crap for depression but pretty good for migraine). My neuro quizzed me about my incidence of migraine back in the 90s but from memory it was no different during those 18 months of medication. So, it’s hard for me to know for sure if it’s working now. This condition is so maddening - drugs which worked once can stop working, no rhyme or reason.
So - I’m now at a position of wondering - taper off the Prothiaden to be drug free (it is easier) and maybe/hopefully drop the weight - or stay on it as I get such good results. Sigh.
Hi Lorraine, Joe, Vic and Kelley
I too am on Prothiaden which is known as Dosulepin in the UK and started it in Nov 2008. I’m on 22.5mg after increasing very slowly as I’m med sensitive. I take the elixir and so am able to titirate up or down more easily. I’m having a blip at the moment but that’s probably due to hormones. Both myself and my niece tried Propranalol (beta blocker) but it left us too fatigued. She’s now trialling Amitriptyline. I also tried Pizotifen (Sanomigran) for a week at the begining but it caused HUGE weight gain for me and muscle jerks throughout my whole body.
It’s very much trial and error and personal choice so good luck!
I definitely remember you from the Healthboard days. It used to be a very busy place once upon a time for all of us. The forum mods were nazis back then. They’d ban you in an instant for trying to make contact with anyone else. Dis you manage to stay in touch with anyone else?
Sorry to here about the vertigo spin and being back into this nightmare again. Have you ever tried Cipramil?
Vic – I have to get off the Aropax. It’s made me feel so indifferent to people around me. It got to the point where I couldn’t be bothered to even call my own mother. Sheesh. This meds sucks.
Vic-…I wouldn’t consider getting off Proth since it’s helping so much, but perhaps taper down a bit more? Does it increase appetite, or is it a metabolism thing?
Lorraine-My doctor told me I could take the Remeron with Nortriptyline, so it’s a fairly common thing to do both…maybe very small amounts of both?
Scott…have you ever considered Neurontin? :lol:
As an aside, I take 5htp supplement daily…worked up to 150 mg from 25mg…I think it has helped. I keep chasing that last 10%-15% remission…maybe I should just accept what I have and hope somehow something makes it
BTW…no weight gain with the Cymbalta…or sexual SE’s…both the worst on antidepressants…so that’s a good thing.
Hi Vic, Kelley, Sian
We cant win really can we, we find something to ease mav and have to suffer something else from side effects, i felt from proth it deff slowed me down and from being skinny the weight gain was acceptable, the weight gain from mirt, i gained most of the weight in the first few months and although felt calmer and more able to eat it was not from the amount as i have never been a big eater some of the weight was water retention i could press around my ankles and shin bones that are normally visable, and big indents were left, i showed it to the doc and he wouldnt have it was the mirt…it was of course…some of the weight i cannot rule out was from some extra food consumption (chocolate sweets) but not overboard …that cant be good long term…also felt when i was stable to give myself a break from meds to detox and for a while each time i seem okish for approx 6 month or so then bam…vic i would stay on proth with good results i will consider that one for myself, i will also consider others as suggested am just a little scared of the unknown :? I would like to try the 5htp i have seen that in the health food shop.
Hi Scott, yeah back on h/b’s they were like nazis lol, the times some of us had to rejoin under different names, i stayed in contact with C/L (emma) and willsmom (ilia) for quite a while after we all gradually made some improvement and frequented h/b less and less…i havent tried cipramil but i have an aunt that is on it (dont get to speak often) as her tinnitus kicked back in bad last year and she said it was a life saver so that is another one i can consider…what is your view of it?
For me Cipramil was a double-edged sword. On the one hand it was EXCELLENT at cleaning up MAV. I waa approaching 100% on that stuff sometimes and it saved my ass post VN and my studies from falling apart. However, the dark side was loss of mojo, about 16 kg of weight (2 stone), and it increased neck pain and headache for me to the point where I couldn’t stand it. I always had sore neck and shoulders on that stuff and nasty headaches after a shower (my scalp triggers headache with sudden temperature change). Reluctantly, I had to move on.
But others get great results on it without the issues I had. Robert Baloh at UCLA claims it’s his favourite med for MAV. Worth a try.
Still speak to Emma? I’m certain she has MAV (and so did London docs) too but she was never convinced thinking it was uncompensated VN like I thought wrongly for 3 years. I hope she’s still not in the same boat.
It has been almost two years since I have been here. Can you believe it almost 18 months no meds no symps no nothing. I had changed jobs at work because I was in in a high noise very bright work area. Was pretty sure this was causing my MAV. Almost immediately the spinning and headaches went away. After a month got off first med. then about three months later got of toppamax. Have not been to Doc in 15 months. But then…
Started feeling tiered and kinda run down. I told my wife I’m not for sure but it feels like the MAV is trying to creep back onto my life. Well, did she ever. I t took her about six weeks. but now that she is here…Can’t say that I’ve missed her, and not looking forward to getting back on meds.
Is there anything new that I can suggest to my Doc when I go to see her?
Sorry to hear of your relapse, I’m in a very similar place right now - after about four years off the drugs and (mostly) symptom free I kept getting episodes of really severe fatigue which developed into increasingly frequent acute migraine symptoms before wam bam, 24/7 dizzies. I’ve been here for three months or so now and am trying to find my way back out of the maze.
From first appearances to be honest, not a lot seems to have changed. Get off the caffeine, get off the painkillers, regular meals, regular sleep, plus/minus restriction diet (depending on which doc you speak to) and work your way through the preventative drugs until you find one that works. Each doc seems to have their own favs but the list I was given from the National Hospital for Neurology and Neurosurgery on Monday lists Propranolol, Amitriptyline, Dothiepin, Pizotifen, Sodium Valproate, Gabapentin and Topiramate. I’ve been speaking to another UK specialist lately who also speaks of Pregabalin and Flunarizine. He does seem to feel that sleep is very important in Migraine and that if taking these drugs makes you very drowsy (even if sleeping for monster amounts of time) then you’re probably not getting good quality sleep and so is very pro the Gabapentin/PreGabolin options as apparently they regulate your natural sleep cycles too.
Hope you hit on something that works for you soon, it’s tough being back,
Thanks for the feedback on Prothiaden. I’m really going to have to have a good think about this one. I’m really not happy about the weight gain (not sure of the mechanism at work) or the loss of mojo. Not just libido mojo but a bit of life mojo as well. Since being on it I do kind of feel like I’m coasting through life a bit. BUT I do get such great results on migraine control. So yes, I will need to meditate on this for a while.
Earl - sorry you’ve had to find your way back here. But why do you think migraine is a she?? I prefer to think of him as a bastard ex boyfriend who stalks me every now and then :lol:
See what you mean about the cipramil, either way some misery to bear, but not for all as you say, we just dont know till we try it. Emma was doing well last time we had contact (few months back) she has started up her own dizzy support group in her home town.
Sorry to hear your going through a relapse too, i also find bright lights loud noises not a good environment to be in, what other meds have you tried? Ihave been off my meds (mirtazapine) for 6 months + and been pretty much ok. This bout started about 3 weeks ago (rocking bouncing in head stuff) but prior to that i started to feel run down, lethargic, horrid feeing of detachment, spacey, i wear glasses and my eyesight seem to alter as tho i need a new presciption, ears momentarily shut off, vague soreness in head and sore neck base of skull…etc…
Went to docs fri, he wont let me try another med so for now i am back on mirt it did do the trick before my only worry is flippin weight gain so hopefully if i can feel better fairly soon i wont stay on them too long, Started at 7.5 and knocked me right out so deff get good sleep on this, took it fri night and slept practically all sat, not so bad now , i am going to see how it goes or i shall go and get referal back to queens sq.
I found 5mg of Remeron to be my sweet spot. I slept great and it really calmed down my symptoms. Then is pooped out on me, but it was great while it lasted!!
5 is hard to get…I cut it in half with scissors, and then “shaved” a bit more…I also felt good konwing I wasn’t taking a lot of medicine…maybe that’s just the mental part of it, but I hate always having’to take more and more meds!
I will give this another go, like you i dont want to go on a higher dose as i did in the first run, not feeling any noteable improvement as yet but it didnt retreat very quickly last time, thank you for your advice i will reduce a bit further and may put off some of the weight gain prob…best wishes…lorraine