Do you feel like you want to rest your head all the time?

Do you feel like you need to rest your head? Since this latest relapse I can not sit up straight comfortably I either have to move around or when sitting rest my head back ALL the time. It drives me nuts having to do this blerghh

I’ve been like that all the time for 3.5 years Donna x

I used to feel like that, but it went away when I started the Nort. Your head feels very heavy. I felt better when I would rest my head on my hand, that way my head didn’t feel as heavy.

Kathy what dose of Nori and how long was it before this symptoms improved or went away for you? x

Hi ladies,

I get that too , or I used to get it before I got to my 80% ish (where I am now) , the nori has really helped me ladies xx

When I relapsed badly I developed a heavy head and literally had to hold it to hold on to it to make head movements. It was one of the first symptoms to go on 30mg of amitriptyline.

Great Ladies I was fine for six months of this year well I would say 90% for six months of my pregnancy and didnt need to do this so going back to a symptom you got rid of is hard on the soul.
I am yet to go up to 30mg of Ami Im tolerating 20mg well but the night feeds are slaughtering me my hubby already whinged as he could not wake me up a few nights ago cause the ami knocks me out so he ended up doing all the night feeds.
I really want to up it though I dont know what to do as I have a children to be up for gosh its so hard x

I think you should probably try to go up to 30mg if you can Donna as I think you might see more improvements at that level. Do you have a heavy head? Mine isn’t heavy I don’t think, I just want to rest it all the time cos I’m dizzy and I want to stabilise it. Is that what people mean by a heavy head?

I don’t know what to do as I am at 25mg of Nori but the annoying side effect for me is it seems to make me quite trembly. My muscles feel quite tremory and my heart beats quickly too at times. I don’t know if this goes away if you get more used to it or if it will only get worse if I increase. I do feel that Nori is helping me somewhat but it is quite hard to measure really. I also don’t know what to do as the Dr said to stay at 20mg of Nori and add Metoprolol but I have tried a low dose for a few days and it really doesn’t seem to agree with me. I don’t know if I am being too quick to write it off but it makes me lethargic and tired and it makes me feel a bit depressed and my memory is shot on it. What do people think? Can you tell straight away if something isn’t helping? The next thing on his list is Topiramate but should I try that now or should I increase the Nori again? I just don’t know what to do…x

Oh jem I dont know its hard I would of personally increased the nori you can go up to 75mg on that. I prob wouldnt go on a beta blocker I really think they wouldnt help me.
I might add another SSRI to counteract the sleepy side affect I might ask for prozac which is stimulating I dont know either.

My head isnt heavy either now it used to be but I just feel dizzy too. People in real life are peeing me off saying I need to accept the dizziness and then I will be happier what I want to say back is bloody unprintable really. Would they like to be housebound for seven weeks and basic tasks are exhausting! Does my head in wish people would get their opinion and shove it up their ass they hve no clue what Im going through.

God it’s a nightmare isn’t it! So hard to know what to do as well. I hate it so much. I can relate totally and I don’t want to be depressing but I just feel like my life ended at 27 and I can’t imagine getting it back again. I really feel for you if people in your life aren’t supportive. Thing is, how can you just accept the dizziness?!! Especially when it changes all the time anyway. It’s very hard to accept stuff when it isn’t a stable condition. You felt a lot better then you had a relapse so how could you accept it now. Of course you are depressed about it and of course you are striving to at least get back to how you were earlier this year. I don’t know enough about all the meds but can you safely add an SSRI to ami or nori, I thought that might be too much serotonin? Would you consider adding a different type of med, not a beta blocker, but what about topamax or pizotifen? x

I know you can take a lower dose maybe 10mg of prozac safely. I would love to go on pitzotifen but its an opposite to Ami it works against serotonin but I know Dr S prescribes both of these together and he obviously knows what hes doing. I need a neuro who knows about MAV to give me another drug I reckon I need two together because I think the Ami works to a certain degree.

I so know what you mean I feel like normal life ended at 23 when this crap started Ive lived normally but not enjoyed life like I used to I dont think I can live a fulfilled life feeling this way something has to work x

Jem have you ever tried an SSRI?

I haven’t tried an SSRI no. I never had to take many meds in my life before this, just antibiotics occasionally and antihistamines for hayfever so never had any experience of them and I have only just started down the MAV route so the nori is my first med for MAV. I have heard others on here take them but my neuro never put it on my list so I don’t think my doc would give me it. Will your GP prescribe it or will you see a neuro? Did you consider seeing Dr Surenthiran? He charges £250 for a first appt privately.

I know, something is wrong with us so something must be out there that will help us but it’s just finding it x

I probably wouldnt see Dr S unless someone would drive me as Kent is a good drive from me unless he has a clinic in London?
i found a local neurotologist who specialises in MAV he does NHS aswell so want my doc to refer me. My doctor is wanting to wait until I have my period to see if it settles he keeps saying he thinks its my hormones out of whack which I know they are but Ive had this crap three years as it is.
I dont want miracles just to get to 90% again like before so I actually have a life I want to take my kids to a firework display next week and this dizziness just holds me back.
Is the nori working Jem? How long have you been on it now?

Dr S does see people privately in central London I believe but NHS is just in Kent as I understand. If you have a good neuro near you then that is good if your doc will refer you. I can see why you want to get referred asap as it takes ages for an appt after the request anyway. It’s hard to know for sure if nori is working, I have improved a bit from where I was when I started taking it and it helped my neck pain straight away. I don’t know how I would be if I wasn’t taking it so it’s hard to judge how much it is helping and how far I could get on it. However, It is different to the beta blocker which I instantly felt wasn’t working, with the nori I felt it could be helping and there were some side effects which I hope won’t stop me increasing further. The beta blocker didn’t feel like side effects, it just felt like it wasn’t gonna help my symptoms because it made me feel bad x

I have been on the nori 2 months now x

I’ve been on Nortriptyline for 4 months with great improvement. I would say my head stopped feeling heavy after about 8 weeks on the meds. I’m at 90% now. I have the rocky boat feeling still and dizzy once in a while, but other than that I feel good. Hang in there, the feeling will go away.

I feel like I want to rest my head too damn much of the time. One thing I’ve learned solidly is that for me, if I am not too dizzy/out of it to get up and exercise–swim, or crunches, or pushups, or gym, whatever the uck–provided I don’t actually start fogging out, or getting nauseous without being able to ameliorate it by slowing down or whatever, my feeling lethargic and frankly beat morphs into feeling either energized or happily worn out, but not beat down. Of course, if I do fog out, this bums me the hell out. Even so, I tend–tend–to be better off than if I’d just moped around. Please understand that I’m not saying I can do this whatever my condition. I’m also not saying that I can get off my ass and do drudge work with the same result.

My wife has learned by now that when I’m beat/mopey it’s good to tell me to go exercise, and she’s not the least bit a nag. (She wouldn’t dare, because I have a stronger nag gene expression than she does.)