I’ve just discovered this forum, it looks like it will be really helpful to me. I hope so!
I have suffered from dizziness for many years. Initially it was diagnosed as Labyrtinthitis but it recurred many times and eventually I came down with Chronic Fatigue Syndrome. I recovered from this after a few years but the dizziness hung around, so I started to see every doctor under the sun, including ENT specialists and neurologists. I had a lot of bad experiences with doctors and am now highly mistrustful of them. Anyway, I was eventually told I had migraines and told to stop having caffeine and painkillers. I was skeptical as although I had headaches constantly, they did not come in sudden attacks. I went along with the advice, and after a few weeks started to feel a lot better. However, it has now been a year since I saw the neurologist and I have not had caffeine in that time apart from chocolate very occasionally, which the neurologist said would be okay, and I am still suffering from headaches and dizziness constantly.
I recently saw my doctor again and he switched me from the combined contraceptive pill to the mini pill, as he said that oestrogen can cause headaches. But this doesn’t seem to have helped.
I feel like there is nothing I can do to feel better. The only option left for me as far as I can see is antidepressants and I am very unsure about this. When I was first diagnosed with migraines a year ago, my doctor sent me a prescription for dosulepin in the post without any consultation, just a letter telling me to take it. When I looked up what the drug was it said it was an antidepressant and was used for insomnia (which i do not have, I am always so tired I practically have narcolepsy) and should not be taken by people with dizziness. So I sent the prescription back and made a formal complaint against my doctor. I do not believe patients should be sent prescriptions through the post without even being told what the drug is. So I really don’t want to take this drug.
I just want to feel better. Hopefully discovering this forum will be a turning point for me.
I’m glad you found mvertigo. It sounds like you may have seen Nick Silver given the advice about avoiding pain killers and caffeine. Great advice I think but it doesn’t appear to knock it out for everyone. I think the next step for you presuming you have been eliminating all potential triggers is to start sytematically going through the evidence-based medications for migraine control. The antidepressants are often VERY effective as they modulate serotonin and noredrenalin among others. Of course there are a number of other families of meds you can try as well. Most people find something that makes things much, much better. If you read the success stories above, you’ll see that even the most intractable cases can be sorted out.
Hang in there … Scott 8)
Welcome! I have dizziness/unsteadiness 24/7 and it been about 13 years! Its awful…I am just now starting the diet and I am just now waiting to see a neuro in May, I NEED and WANT relief, I HATE any kinds of meds and I am scared I will be offered them and then scared to take them, so I feel where your coming from. Your not alone!
I’m still trying to figure out all my triggers, but I can tell you that years ago I stopped taking the birth control pill and my migraines went from 2 a week to 2-4 per year! The pill can really mess with things, as hormones can be a huge trigger for women. Can you get completely off the pill? I will never take a hormonal form of birth control again.
Of course now I don’t get the headaches as much as the constant dizziness/lightheadedness. I’m on prozac (although not the first choice antidepressant for MAV I’m learning, but everyone responds differently) and see the neurologist tomorrow to talk about adding something else if the prozac doesn’t dial it down enough.
This site has some really great information and I’m armed with lots of good stuff to talk with the neurologist about. Good luck!
I asked my doctor if I could stop the pill completely but I used to suffer from very heavy periods so he said the mini pill would be a compromise.
I haven’t seen anyone called Nick Silver, the doctor I saw was called Dr. Sathasivan.
Thanks for referring me to the success stories, I will have a read through those. I was hoping to be one of those when I first stopped caffeine because I really did feel improved but now it has recurred again. I will certainly look into taken some sort of anti-depressant but I want to avoid it if at all possible. Having said that, I do think stress plays a bit part in how I feel.
I also recently started taking anti-histamines for a different condition, perhaps I will write a separate post or read through the forums to see if anyone has been triggered by these.
Thanks everybody x