Don't know where to turn

HI,

I am starting to feel that there is nowhere to turn. It al started when i woke in the night, got out of bed and the room just span, the dizzy spell lasted an hour or so and then i managed to get back to sleep. In the morning i was still dizzy. This lasted on and off for the day, and then after that i just got pulses of dizzines that lasted a second or so each time, moving mt head, or getting up etc did not have any affect on them ie: did not make them worse… A headache started at the same time which latsed daily for the last 3 months.

The ‘pulses’ lasted for weeks, and then stopped. I have now been left with brain fog, can’t think clearly, don’t feel like I am focusing properly (although can see clearly) and headaches. I was at first told that i had Labs, by the ENT specialist but then he changed his mind and said it could be migraine related. I was told to take Amitriptyline and keep increasing the dose. I felt a bit clearer headed at first and then just felt worse than before. i am not dizzy anymore.

I have had blood tests, brain scans etc, and everything is coming back normal. I just don’t know where to turn now, the ENT said he couldn’t help, the doctors have no idea and I am panicing that i am going to be left like this.

Does anyone have any suggestions??? i just don’t know where to turn now. Would a Neurologist be able to help?

Lou

Lou,
I can related to what you’re going through. I’ve been on AMI for 6 weeks still awaiting visit to see new Neurologist. My PCP said to only take 25 mg a night. I’m like you, have seen a slight improvement with the dizziness and after the first couple of weeks had seen a huge improvement with mental clarity and a feeling of being at ease. My memory was better, I read things faster and comprehended easily. This was a big problem for me before AMI. Unfortunately, today has been the first day I’ve felt like I’ve slipped back to the brain fog feeling again. Hang in there and don’t give up.

Thanks Skip, I just don’t know what to do about the amitriptyline, i am not sure if i should carry on with it. i got it up to 40mg, and just felt worse with this, so i have dropped back to 20mg. i just don’t know if i should have carried on with the 40 in the hope i would have got used to it, or if it is not really working for me and to come off it… doctors are no help at all, and the wait to see a Neurologist is months… ahhhhhhhh

I feel your pain. I have only three more weeks to go now, been waiting eight weeks to get in to a headache clinic. They have a team of people and a neurologist who specializes in migraine, and are supposed to be very good. They are also the only such thing in town, hence the wait. But the wait is difficult. I have been very ill and nowhere to turn. My hope is that when I get in there, I will not have to explain vestibular migraine to them.

I am doing topamax, and was told to do 25 for a week, then 50, and work my way up week by week. I read about the side effects and decided to do 12.5 mg instead. And I am not going to take more than that until after I see the headache team.

All these drugs should be tapered on and off slowly per week and not stopped cold turkey. Otherwise they mess with your brain and body chemistry.

In the meantime, you could try getting some of the good books around about migraine, like “Heal Your Headache” by Buchholz. I found it very helpful to read this book and gained some knowledge of how triggers work–more in the way of a revelation, actually. I am trying to change the way I eat and sleep, and a few other things. I kind of miss stout and porter, snif, snif… but anything is worth a try when nothing else is working.

I am finding out through reading a lot that anything you try, be it drugs, diet, etc…it is sometimes MONTHS before you notice a change. It isn’t like a magic pill or a light switch. I find that very discouraging, but I have had this problem for six years now, so what’s another two or three months to try something?

Lou,

I have had this for 5 years, can’t take meds so i do the diet. You should try it as I feel it has been good for cutting symptoms.