Hey everyone! i’ve been reading through posts for awhile and wanted to share my story/get some insight from others who have been dealing with this much longer.
I’m a 28 year old female from upstate NY. My first epsiodes of dizziness were few and far between- I would only get it after traveling (flying) so initially thought it was an ear/sinus/pressure issue. Then the episodes began happening closer together so I met with an ENT who gave me the diagnosis of vesitbular migraine. Since 2020 began i’ve had almost as many days dizzy as i’ve felt normal. I’ve tried eliminating caffeine from my life (missing coffee a lot!) as well as most of the other migraine triggers. In February I was started on Nortryptiline and quickly tapered up to 40mg (from reading other posts I feel like maybe increasing by 10mg once a week was too quick?). Since the 30mg bump I’ve felt constantly dizzy- now i’m getting the episodes with no motion trigger at all and only having one non-dizzy day between episodes. I feel frustrated that it seems like my episodes are more frequent with worse signs. I don’t know if my migraines are getting worse or if the medication is causing more issues than it is helping? My anxiety is also much worse which I know is not helping the matter but between the covid-19 madness and the dizziness I feel like I have no control
Any advice or positive thoughts would be appreciated. I’m happy this group exists
Hey everyone! i’ve been reading through posts for awhile and wanted to share my story/get some insight from others who have been dealing with this much longer.
I was/am trialing nortriptyline. Seemed to be tolerating it fine and after a week of being at 75mg I was getting true vertigo spins and my balance was completely gone. I talked to my neurologist and we decided to go back down to 50mg nortriptyline and added 25mg topiramate. And I am MUCH better. Still have a lot of room for improvement and will work my way up on topiramate but the spinning stopped and my balance has improved.
Maybe you could talk to your doctor about going back down a dose? Hang in there. This stuff is not fun or easy but everyone on this site is amazing!
I feel your situation dear
It is a horrible disease and Anixitiy or stress will make it Much worse
I had my last vertigo 20 months ago and since then my heavy head and dizziness is on and off but i am feeling much better at least my sight is back
When the vertigo attack hit me i was miserable bedridden and could not see clearly due to blurry vision
I had rocking sensation all the time and could not have a night sleep
But there is always with God help a light at the end of the tennel
We are human beings strong and confident in nature and it is our nature that keeps us moving
I changed alot the past year
Changed my lifestyle
I eat healthyfood
I went back to work cause staying home made me crazy
I workout 2-3 aday
I manage to go to outdoor activites where there are nature and healthy sun exposure
I am much better mentally
Hi, welcome! How are you doing today? Sorry I meant to respond earlier, it sounds like the taper might be a little quick for you, or the drug may simply not be a good fit for you. It might not be a bad idea to reduce by 10mg-20mg and let it settle for a few weeks or more.
The other option you can ask your doctor about is to switch over to Amitriptyline. Some people seem to tolerate one better than the other, and switching between them without titrating up/down is fairly common, so this could be a fairly easy thing to try. I almost switched from Amitriptyline to Nortriptyline, but I seem to have adjusted fine to Ami.
Anxiety is crippling with this condition. You are not alone, we understand exactly what you are going through. If you need someone to talk to sometime, just PM me.
I would really appreciate advice and any encouragement possible as I’m having a really hard time with this current episode (feeling especially anxious and dizzy)
a summary of my journey: was diagnosed with MAV last December by an ENT. Initially my episodes were short and only post traveling (usually in an airplane but sometimes by boat). Last spring I had an episode that lasted several weeks; at that time I tried nori but after a fast taper up to 40mg over a month time frame I felt more dizzy than ever. That episode eventually did subside and then I had a few break through short episodes in the summer. At the end of October I tried Effexor (prescribed by my GP as I was not a fan of my ENTs manner). She started me at 37.5mg and after two doses I had an extremely poor reaction- terrible nausea, panic attacks, couldn’t sleep for two days, etc. following coming off the Effexor I continued to have terrible anxiety so was diagnosed with an acute stress reaction from the experience and given Xanax as needed to manage the anxiety. Long story short I ended up going into a vertigo episode one week into my acute stress reaction from lack of sleep/stress/not eating. This episode of vertigo is ongoing and feeds into the anxiety loop. My anxiety has improved (I took a month off work as I’m a veterinarian and felt unable to perform at a safe level) but is still much higher than usual and I’m still not sleeping well (difficulty falling asleep and never stay asleep). At this point I am TERRIFIED of trying another medication for either my anxiety or my MAV since I had such a bad reaction to the Effexor. I lost my father to suicide when I was a teenager so I’m also afraid of the SSRIs given their label of “may increase suicidal thoughts or actions”. I am not suicidal but am very anxious and getting depressed with this ongoing episode. I just want to be less anxious, less dizzy and sleep through the night
I guess I’m just looking for a friend since I feel very alone through his experience and advice on what I should do next. I have an MRI next week but as of now think I should try to get a neurology referral and am on the fence about any meds including those for sleeping.
Thanks in advance
Be careful switching meds and doses so much. Your body needs to adjust before you can fully judge a meds success.
None of them are a silver bullet (don’t expect to be symptom free on a med at least initially) and it’s possible you had a fluctuation in your symptoms and it wasn’t related to the med at all. So be careful blaming the med.
Unfortunately you are going to need to pick a strategy and stick to it for 3 or more months to even get close to working out if something is helpful or not.
Sometimes however it’s really obvious though if something is helpful or a hindrance straightaway.
Working out what is helpful is really challenging when your symptoms are up and down.
There’s no easy answer and it’s very personal.
Consider prop or ami as potential trial candidates.
Good luck and keep us in the loop on how you are getting on.
Stay off the benzos!
I am so glad you came here for support!
We’ve all been in various stages of where you are. I remember so well the dark days of fear and anxiety that feed each other in such a vicious cycle that is hard to break.
I think first and foremost, you need to find a neurologist or otolaryngologist who you feel completely confident and comfortable with. Keep searching until you find that person… it’s worth the time and efforts.
Someone that you can place some of your burdens on, who will support you through the healing process and be your partner in it.
When you have that partnership, the medicine trials are not so scary!
The anxiety is lessened, therefore the cycle is broken and you can focus on healing.
I have no doubt that you will get there Natalie, hang in there!
Hi Natalie, oooh I feel for you my friend and absolutely need you to know everyone here is on your side and cheering for you.
You are not alone in feeling a deep level of despair. I myself am only crawling out of that terrifying hole and also have a lot of anxiety about returning to that said hole.
I agree with @Naejohn, you definitely need to see a neurologist and one that is familiar, or even better specialises in MAV or at least migraine. Especially when prescribing medication. I thought starting on Effexor straight at 37.5 might have been tough. I have not tried this, but know a lot start very low and titrate up very slowly. I read that they count the beads inside the capsule at the beginning.
Medication wise, I fall in the camp that believes medication is necessary to some extent in finding control. It is scary and MAV requires the big gun medications to provide relief. BUT it is important that you find one that suits you and you are comfortable with and can manage the side effects.
I am on my second med, pizotifen and so far feel it’s helping, I had insomnia with my first, and this one is great for sleep so it’s a lot better. I don’t think it’s available in the states though.
When starting something, make sure you get on here and ask as many questions as you can or just to find support in the first couple of weeks. But try to stick with it if you can.
Glad you’re here with us (not glad you have this rotten thing). Stay strong
Thanks so much for taking the time to comment and giving advice plus encouraging words. I met with my doctor yesterday and we discussed the ongoing anxiety and dizziness. I left with a referral to a neurologist but not sure how much he/she will know about vestibular migraine but at least it’s a good jumping off point. My anxiety has been so extreme the last 6 weeks that I feel like it’s not helping this episode to go away (in the past I’ve been episodic with episodes lasting days to one other time several week but it’s always went away on its own). Since my anxiety is so high and my job is a stressful one (veterinarian) we agreed it might be time to start something like Zoloft for managing the anxiety since the benzos aren’t a good long term plan. I’m definitely still scared given the panic attacks induced by the Effexor but understand that Zoloft is different than Effexor. My major question for you lovely people is if there is anybody out there who is on an SSRI that helped with the dizziness alone or am I eventually going to have to also add in one of the other migraine preventatives (nori, ami, prop, not sure exactly which would be safe to add to the Zoloft so will discuss with my doctor for sure). My most desperate hope is that once my anxiety calms down and I start sleeping again more regularly + really committing to the HYH diet that this episode will end and I can prevent future episodes. Trying to stay optimistic!!
Hi Natalie, one thing I wanted to reach out about is to implore you to be very careful and extremely sparing with benzos.
They are extremely effective at short term relief of anxiety and distress, but can make you deteriorate mentally very quickly. Even worse they can interupt the healing process of vertigo.
I also took benzos for managing vertigo related anxiety and never took them more than once a week, and even this level of usage caused a very rapid mental decline. I experienced worsening anxiety in the days between dosages, increased vertigo, feelings of dissociation, and weird unstable mental feelings I had never had before. It’s very scary how quickly benzos increase your level of anxiety when you are not on them, and how much they destabilise you mentally.
Eventually I resolved to just stop taking the benzos, and instead do a 5 minute run every morning (yep only 5 short minutes), 30 minutes of meditation (using the Sam Harris Waking Up app), and no caffeine of any kind, not even chocolate.
It was very hard and rough but I kept with the daily plan and didn’t give up. Many times I was so anxious my partner had to talk me out of calling an ambulance, as I would become convinced I was about to pass out and die. Many panic attacks were so bad I would involuntarily beg god not to kill me - despite not being religious. The anxiety was indescribable.
However, within 2 months I felt better than I had in years. Not healed, but noticably improved. I started going out of the house beyond just running, little trips to the shops. Then I started meeting up with friends, and going to the gym by myself, and picking my son up from school. All these activities used to be impossible due to being so anxious and dizzy, but now I can do them again.
I honestly believe that meditation, if taken seriously, is more effective at anxiety relief than any form of medication. It teaches you directly how to live with difficult feelings, thoughts, and sensations. It also teaches you how to control your attention. I believe out of everything I tried regular meditation practice had the most direct effect in improving my mental health.
The reason I felt compelled to post this is because what you wrote about being prescribed benzos and then having worsening mental health directly mirrors my own experience. Looking back, and after researching benzos deeply, I am convinced they made me much much worse, despite bringing immediate relief when taken for anxiety.
Hope you feel better soon, and please give meditation a try. There’s a lot of scientific research on the benefits and no side effects other than 30 minutes of your time each day.
Well said Nathan. I think I can more or less second guess the UK medical professions thoughts on Benzos generally. They just aren’t prescribed. They have gone out of favour long since because all of all the associated problems you have mentioned. Here in the UK even Valium, which years ago was issued as standard pre-med prior to surgery, is unobtainable even as a ‘back up’ to assist with anxiety relating to having experienced vertigo.
Trouble is with mood changing drugs like ADs etc they only mask symptoms the root cause remains to torment. As you found Meditation may be a better option for many however with MAV some find it just turns them even more in on themselves and all that stillness can obviously make the constant dizziness much more noticeable.
Any neurologist worthy of the name should recognise vestibular migraine although you may obtain better management info from consulting a neuro-otologist.
It is quite usual for attacks to gradually become more severe and progress from episodic to chronic, mine did. As you have already realised the condition will feed on anxiety. Indeed it tends to see it as a superfood.
In answer to your ‘major question’ I am sure there are people who have found Zoloft helped with their dizziness alone and others who did not. The decision I suspect will be your doctor’s as to which you take, the Zoloft or one of the more commonly using preventatives Propranolol, Ami or Nortriptyline, Topiramate which are the usual first line treatments and your doctor’s decision should reflect which is the more relevant symptom, your anxiety or your dizziness and exactly where migraine/vestibular attacks fit into the picture. Just for info Propranolol is used to treat panic attacks and can actually be taken as and when as apparently many musical performers do it seems. Taking it that way will not however make it work as a preventative. For that it needs to be taken daily over a much longer period of time.
Unless the anxiety is the main cause I think you will find it’s more likely to be the reverse. Best way to obtain control is to really commit to introduce changes now. Quit caffeine, commit to the diet, implement the lifestyle changes, try the meditation, get on the chosen medication, start noting triggers, etc etc then if the anxiety is the result of the condition it should eventually start to settle. Anxiety and interruptions to sleep patterns are both common VM symptoms.
2 posts were split to a new topic: Meditation
Just want to say that i’ve been suffering from VM (presumably) the past 6 months with massive anxiety and light sensitivity. I was constantly feeling dizzy and had “rocky” feeling akin to that of being on a boat. My GP prescribed me Paxil(SSRI) and i’ve been on it for the past 2-3 months. The dizziness subsided considerably, and anxiety is close to zero. I used to be super anxious about even leaving the house and being under artificial lights would cause me to start panicking and feel really light-headed. However the Paxil’s have literally obliterated that feeling, and I would say I am 80% recovered, except that i still feel the “rocky vision” when using computers etc. I have heard lots of negative stories about SSRI’s but to be frank it has really made my life more liveable so I am really happy to have. been prescribed it. Do be really careful though, I must say I’ve been lucky to not suffer much of the side effects, and it’s been relatively smooth sailing for me.
That’s awesome! How much Paxil? What meds did you try before that?
Never took anything before that, Paxil was my first, and i’ve been taking 10mg daily. Feels like i hit a plateau in recovery though, thinking if i should go up by 10mg…