I am feeling very low right now and need advice. I have had dizzy symptoms since Nov 2020 after a nasty 3 day migraine after my period (mentioned in my intro post). I never had any issues with dizziness with my chronic migraines for the past 20 years or so. The only med I took for migraines in 2020 was Nurtec.
I trialed a Depakote “burst” (short term prescription which my neurologist thought would break me out of this cycle), it has not worked.
Early this afternoon I went for an occipital nerve block (he used lidocaine) and felt a little relief from some facial pressure. I literally maybe had an hour or two of no dizzy spells. Well it’s evening here now and the dizziness is right back to where it was before. I know there are a lot of people on here that are struggling with symptoms for so much longer than me and I pray for relief/ recovery for all of you.
I just don’t know what to do next. My neuro said he wanted to do IV infusion of mag, toradol, and an anti-emetic this week if the nerve block doesn’t work. I don’t know if this is really going to do much as I’m not having as much trouble with headaches as I am with the dizziness when standing up. I seem to feel much better when moving now actually. Does anyone have any insight regarding these infusions?
I told my neurologist that my anxiety is terrible right now. I have a hard time sitting still/ standing still. He started me on 10 mg of lexapro today and hoping that will help (I know that will take some time as well). Is there any way that maybe my dizziness is now all anxiety driven?
Does anyone have any other recommendations at this point? Neuro wanted me to start on lexapro and maybe add verapamil down the line. Thank you so much for any help .
I know nothing about infusions or ONBs either. There are other threads relating if you use the Search facility as there is for ‘tornado’. Also worth looking at ‘lidocaine’. That can certainly cause dizziness so can also probably increase existing too.
As you know I am no doctor but somehow I very much doubt your dizziness is now ‘all anxiety driven’. Anxiety can certainly wind it up further but I doubt it’s become the whole picture not after such a short (three months) of MAV. Anxiety often becomes part of the condition. Not surprising really considering all the symptoms we experience. A psychologist I knew who has experienced MAV himself once told me ‘once you have had this you never see the World in the same light ever again’. He was particularly referring to being a sports fanatic 30 something year old who woke up on morning and had no balance to reach his own bathroom. Recently I have been waking up with anxiety myself, that feeling I have butterflies with the wingspan of a Condor in my stomach and thus stems from my recent full on attack my first in over five years since pre meds. I was shocked at its severity having thought from the intervening period of time that the Propranolol had hit them on the head for good. Not so obviously.
Sorry if the next bit sounds rather brutally frank. Maybe I am wrong but reading between the lines I imagine you are poised much like a greyhound waiting for the release of the hare because then everything will be back on track. It’s all rush, rush, rush, try this, take that, quickly and all this will be behind you. Unfortunately these vestibular conditions don’t generally proceed quite like that. You need to work on ‘Acceptance’. As UK doctors are (over)fond of stating ‘We are where we are’. The dizziness is here now where it wasn’t before and once it’s here it does tend to hang around believe me. It’s unlikely to be going anywhere anytime soon.
What you have to do next IMO is to accept you have to wait it out. As you say the Lexapro may take time to work as will the verapamil but it could well be you will feel very much better, far less anxious and edgy once they do for then, and only then if I guess your current mindset correctly, you might be able to see a bit of light at the end of what currently looks like a very long dark tunnel with a dead end.
I had Occipital nerve blocks on two occasions. The first time I felt dizzy an hour or so after but I think that may have been my migraine brain reaction to the travel and stress of attending the clinic. My headches lessened a bit but I was also on a preventative medication so it may have been that. After the second block I was very dizzy for a few days afterwards and one node was very swollen and irritated at the injection site, although the specialist maintained the increased dizziness could definitely not be due to the ONB. I’d didn’t have another but they do seem to work well for many migraineurs - so fingers crossed for you. I was told the effects could take a week or so to kick in.
I’ve not had IV infusions, not popular in the UK (NHS). Most doc’s here do recommend taking a magnesium supplement daily of 500mg as recent studies shave shown taking it to decrease frequency of attack for many. It also can also aid sleep and medication side effects such as constipation. So an IV of that makes sense. I do think dealing with this can really deplete all our reserves and you have probably been “running on empty”. My last bad attack two and half years back really shocked me as I felt (like you) incredibly agitated and like my brain and body was stuck in a flight response for weeks.
I guess the toradol is to give you pain relief so you can hopefully get some rest and the anti emetic incase the toradol makes you nauseous(?). I think getting on a preventative med and accepting that it may take some time to kick in or assess if it works for you may be the way forward. There is a tree diagram on this site (in the wiki?) but also here (about halfway down the page): https://www.dizziness-and-balance.com/disorders/central/migraine/mav.html
That is used by the emminent MAV specialist Dr. Hain. Verapamil is listed but if you are up to it you may want to research a few meds yourself and seee which you think best fits you (e.g. if you have blood pressure as well as MAV then something like propanalol or candesartan that also reduces blood pressure might be a good fit) and ask your doc about trying it.
I hope you fell better soon. Sorry. I couldn’t be more helpful about the IV meds. It does seem doctors in different countries take slightly different approaches.
Really good point. I think mine’s pretty much there currently too after my very recent one which still hasn’t settled much now going into the fifth week. After so long I wasn’t expecting such severity and persistence this time around and I guess @ElizabethHope18 is maybe still more than a bit in shock from November.
Yes I agree I am still in the shock mode of things and not handling it well at all. I had a little more hope last month when I wasn’t sure what was going on and thought maybe this was something that could be sorted out sooner.
I just started another masters in nursing course today and I am seriously considering dropping it so that I can still get my money back during the first week. I am out of work right now (thought this would only be temporary), but now realizing that this may take a very long time to sort out. I am considering giving up my condo and moving back home with family members as I think the isolation with these symptoms are making everything 100% worse. I am afraid to try so many of the meds that have worked for others on this forum because of potential cardiac side erects and just feel very trapped right now. I just never dreamed of getting to this point and still consider myself relatively young (just turned 40). Sorry for the negativity, just feel so overwhelmed, depressed, and that I’ve lost so much control over my life.
You most certainly haven’t lost control over your life. You have only lost the illusion. If one really stops to think about it one actually had very little control to lose. When it comes down to it our physical well being or lack of it controls our lives and over that we have no control.
No doubt everything looks very bleak to you at present. Only natural. You need to get to grips with an entirely new concept that of having developed an ongoing condition which can adversely affect daily functioning. You are bound to feel isolated. Invisible illnesses do that to everybody affected. MAV can certainly be a rollercoaster of a tide and it pays to have emotional support. Family support can make all the difference. I am struggling to understand how people manage without support for instance those living many months through COVID lockdown all alone. Best to make some pragmatic plans soon as you can.
There are many different preventatives out there so you can leave the medics to work out which best suits you with your other health issues. If it’s any solace almost everybody else has similar restraints. I would have loved to be able to try Amitriptyline but have strong contraindications for it so that’s out for me. Of course, at 40 you are young. That and being til very recently both working and exercising will each give you advantage when it comes to ongoing treatment. Being 40 there may be increased hormone involvement with incoming peri menopause. That might open up other opportunities for you. Discuss with your medics. There is bound to be a way forward it’s just a question of finding it.
Thank you so much for what you wrote. I was in tears reading it to be honest. It is very helpful to hear from someone that truly understands. I think right now fear of medication side effects coupled with all the uncertainty of how this condition will change my current living condition, income, school, short term and long term goals really has me in a tailspin. My family lives far away but has offered help - especially with regard to moving in with them, etc. I just don’t want to be a burden on anyone however I’m recognizing I’m failing at this alone right now.
One thing I did this morning to feel like I’m handling this in a productive manner - I called my old cardiologist this morning to discuss some of the treatment options that have been recommended and see what he thinks. I feel like when I talk to the Neuro he doesn’t focus much on side effects unless I ask a clarifying question or raise a flag. I hope I can get a video conversation with the cards doc and have a better understanding of what makes sense for me.
Specialists in their own field recommending treatments never concentrate on side effects. They are in their own private idealised bubbles. I well remember one orthopaedic one who put my broken shoulder into immobilisation by suspending it from my neck. Not something a chronic MAVer can tolerate. When challenged he said that was not his problem but ‘that arm must stay there for up to three months”. On the internet we found a sling that attached to my waist instead and shoulder mended within 6 weeks. And I avoided falling flat on my face every time walked. All these specialists can be a bit too ‘specialist’. Be much better for them to treat the whole person rather than component parts IMO.
Btw as the family offered a helping hand I’d say grab it, and ask @Naejohn about ‘burdens’.
Yes I totally agree on the benefits and downfalls of having specialists and not looking at the body as a whole.
It is amazing to me that an orthopedic doc would have you wear a sling like that after you explicitly told him that you have issues with dizziness, etc. just goes to show you there are some practitioners that are eager to use the “one size fits all” mentality. I’m sorry you had to go through that and glad you were savvy enough to find an alternative.
Just an update, I have an appt with the cardiologist in a little more than a week. I just feel like it makes sense to hold off on trying something like Nortriptyline etc without a more educated conversation with someone who is familiar with that system.
Hi Liz,
Here is something I have learned about VM and just life in general I guess over the past 3 years I have had Vestibular Migraine: Time will keep ticking on, with or without our participation in how it is utilized.
I spent the first year flailing around from one Dr to another, to therapists, to Ophthalmologists etc, one year with no medications, no help… not even a name for whatever the beast was that was living inside me and time kept going on… the world kept turning while I searched for help.
Two years has passed now since I finally was presented with a name for the beast and with a plan of action to help tame the beast. Thus here I am, three years later in total wondering how time went by so fast.
Take a deep breath. Unfortunately, if VM has become chronic; it’s very unlikely that there will be a quick fix I’m so sorry to say. However, please don’t be dismayed! Every single day there can be improvements. Those days turn into weeks and those into months and then… all the sudden, you’re me and Helen; typing about years gone by
Take each day as an opportunity and embrace that. You are young and that will serve you well. If you have supportive family, take them up on their offer of help… allow them to be part of this process. Don’t look at it as being a burden. You have no idea what kind of fulfillment that loving, caring families can get from helping and nurturing loved ones… allow them that.
Thank you for your kind words and support. It has been so difficult to be so isolated from family and friends when this hit in November of 2020.
During the entire pandemic I have managed to continue to work as a nurse and get through some difficult times. I’ve always had chronic migraines but never with any type of dizziness. I have taken fairly good care of myself - eat well, exercised, etc and then this just slammed me in November.
I’m working with a neuro who think he can “stop the cycle” by using some more acute forms of treatment - we tried the nerve block, and now he wants me to come in and have IV magnesium administered with some other meds. I’m losing hope that these acute interventions are doing much.
I think I need to start on a preventive medication for VM, but have had a really difficult time determining which one will work best for me given my heart flutters, history of rapid heart rates in the past. I actually scheduled an appt with a cardiologist to talk about some of proposed VM medications.
I have seen your posts after reading a lot of success stories on this forum. It seems like you are doing pretty well at this point or do you still have some bad days? Can I just ask, did this come out of nowhere one day for you or was it more of a gradual build up?
In terms of family support, yes I think I need to move back in with my family. I never thought I’d be doing that at 40 but I am not handling the isolation and fear well and I think it’s making everything worse. It stinks bc I am giving up a life here - a job, school, so much of what I identify with and just doing a lot of soul searching about who I am now. Just have to do a lot of praying
Hi Liz,
I’ll never forget the anxiety of feeling so lost for so long. In retrospect I learned so much about myself with this illness… I learned that I had become my job, my identity was the girl who was on that business card and who jet set all the time making things happen within my industry. This was one of the many soul crushing things for me… to lose control and admit that I was no longer “that” girl.
Yet, here I am three years later and I am Renee. Same girl, same industry and may not be jet setting quite as much as I once did… I am absolutely “enough” as I have ever been… and so are you!
Your leaving the life you know to be what’s right for you now… but what will be your perspective 3 years from now when you look back? I hope (after careful consideration and lots of prayer) you can look back knowing that your decision was the right one for your healing. That needs to take priority above all else.
VM came over me very suddenly on the morning of January 9, 2018 when I woke. I had never been “dizzy” like that before! In retrospect however, I do think it had been stirring for some time prior since I have battled intense headaches and what I thought were sinus issues for years.
I do have occasional “bad days” but only bad by my current terms which is hardly a bad day at all! A bad day for me now means I have a lot of head pressure and head pain with some minor imbalance. Those days are very rare now and will go away after a good night sleep. I don’t have to take rx abortives, however I do take ibuprofen or Tylenol. So I have no complaints!
I hope you do decide to start a preventative soon. For me at least… I gave every other possible non medical remedy a fair shot over the course of that first year, while I kept getting worse. Seems you have very attentive medical care and that means the world!
So far I have been unable to find anything in the internet about this and I don’t recall speaking to anyone on here over the last three years who mentioned it but the Search facility threw up this
Thank you for sharing your story and for all of your encouragement. Your empathy is very much appreciated.
Yes right now the challenge is to sort out my living situation while trying to figure out a treatment plan for VM. I am very blessed to have family that are supportive and checking in on me frequently through phone calls and FaceTime.
Your thoughts on changing perspective to focus on healing resonate with me. I have to just focus on getting better and not all of the stressors that are feeding the cycle.
I think I keep looking at this as a life-altering condition (which it can be), but it seems as though many people on this forum have been restored a decent quality of life, if not very close to functioning at a level they were previously. That does give me great hope. Your story about how you had to be on meds for a while but now can function with taking very little really stood out to me as well.
Are you only taking abortive meds at this point and finished with preventative meds? I know everyone is different but what worked best for you (your profile says you take/ took nortrytyline and topamax).
Thank you again for all your kind words as I work through these challenges and focus on healing.
Thank you for searching on IV treatments for VM as well. I searched for a while in the last 2-3 days and only found that IV Mag can be used for acute migraine attack, but doesn’t seem to address the vertigo/ dizziness aspect.
I agree my doc should be the one determine what preventive meds to try. He went through the options - TCAs, beta blockers, calcium channel blockers a few weeks back and decided to try verapamil first because of previous arrhythmia concerns.
The issue I have now is when to start bc he wanted to try these acute interventions first. I know that I’m really anxious and depressed and I don’t know if verapamil will make this worse or if I should start taking an SSRI at same time as starting verapamil (kind of like chicken or egg mentality). My real question is, do I try to get the anxiety under control and then start a preventive med for VM?
Doc has not been too helpful about those types of questions. I just want to be able to give the VM meds a fair shake and thought if anxiety better controlled then maybe they would be a good point to start. Again, I have no idea though and doc isnt really helpful paving a way here.
I should also mention that I am going to see Dr. Michael Texeido (neuro-ENT) at beginning of March as I felt it was important to meet with a specialist who cares for so many VM patients (very difficult to get in to see him).
Good morning Liz,
I am still taking Nort and Topomax. I have taken preventatives now for the past 2 years and quite honestly, I know and am completely at peace with the fact that I may take them for life.
What’s funny to me about that statement is this is coming from the same girl who was anti-establishment “big pharma”; never had anything other than a rare 1 off prescription for a sinus infection. Relied on herbs and vitamins to cure whatever ailed me
I feel like a lot of your anxiety may be self induced with your taking too much control over your treatment… although not your fault. As an outsider looking in: it seems as if you have not found the right doctor. When you find the right doctor, you will allow and trust him to do his job and let that worry fall on his shoulders. He will want that and you should feel confident in his care.
^^^ THIS is the best news I have heard! Wonderful! I think once you see Dr T, you will see a lot of your anxiety relieved and with that… a lot of your depression will go too!
I am a pretty anxious person and even more since all of this started even though I have felt better regarding that aspect lately.
In December my anxiety was so high that I couldn’t take the Amitriptyline that was Rxed to me and my P doctor put me on Lexapro 5mg.
Go figure, I felt very peaceful on it (3 weeks) but my headaches and dizziness became unbearable. I had to stop, it’s like my mind wanted to go out and do things but my symptoms were worse.
However I think that’s a very good test to do.
If you don’t feel better on something else will work. But I’ve read some MAV sufferers who felt better with it.
Thank you so much again for your support and kind words.
The neuro’s new plan now is to start me on verapamil ever day at a low dose. I have to stop taking Nurtec (cgrp abortive) because I believe that interacts with the verapamil?
If anyone else has heard of cgrp and calcium channel blocker interaction, would be interesting to read about - I only found one or two articles.
I have to admit I was pretty upset hearing that I have to stop taking Nurtec when it has helped so well in the last year with menstrual migrianes. I’m nervous to start a triptan now for menstrual migraines. The one the doc wants to start is naratriptan, which I have zero experience with.
I’ll be honest my anxiety is through the roof now as this information was delivered to me late yesterday afternoon (Friday) by a nurse who was not able to answer my follow up questioned and told me I’d have to wait until at least Monday to message he doctor. I feel like if a doctor is going to change the game plan that much there should be a conversation between patient and provider. Just very anxious and disappointed right now.
I was going to start on Lexapro (neuro prescribed that last week) and now I’m totally confused as to what to do as I read triptans and SSRIs are a no no.
What I really wanted to ask doc about was why not try a preventative cgrp med (aimovig, etc) to see if that would work with some of my dizziness as well. I feel like in the last 2 days after I’ve taken my Nurtec the unsteadiness has lessened a bit (and this is the week of my period when I usually have the worse time with migraines).
So until I talk to the doc on Monday/ early this week I guess I just hang out for a day or two and manage everything as we have been. Just not a good feeling at all.
Thank you for your post and so sorry to hear you had to change meds. Was the ami working for you for a long time? I can imagine it was very disappointing to try something new and not have good results. Do you have a new plan or maybe go back to the ami? Sending support and hope you are feeling better.
No - during my first trial I increased my dose too fast (per my neuro recommandation) however as I am mes sensitive the side effects were too much for me and caused anxiety and shortness of breath.
Decided to trial it again in January and now I can stand a higher dose (I am at 7mg atm, increasing 1 mg every week or so )
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