I have written here a few times. I am about 7 months into my experience with what I thought was MAV. I was diagnosed in April with MAV, over the phone by my neurotologist. I even got a second opinion from Dr. Teixido, also over the phone, he too said MAV. I am having a hard time tolerating ANYTHING (as far as meds go). I even struggle to tolerate supplements. My worst symptom is feeling faint (pre-syncope.) I went to the ER a couple of weeks ago and they IV administered Phenergan and that was the scariest experience ever. I immediately felt like I would faint, my legs stopped working, it was wild.
Now all of a sudden, my digestive system is involved. It is forever irritated. I have not changed diet much, except to follow HYH. I am nauseous all the time. I have this terrible air hunger feeling occurring, as well as, palpitations. And most of my really bad episodes are lasting more than 8 days in a row. Is that even possible with migraines? I had thought 72 hours was the max. As of now, I’m on day 9 of a horrible episode. The other thing is, I do not get headaches. I have no way of identifying prodrome or postdrome or any of it. None of it makes sense. There really is no beginning middle or end to this. I am dizzy 24/7 but then have these worsening of symptoms episodes. Now the lorazepam isn’t even working for the dizziness anymore.
I have become so desperate I have reached out to the Mayo clinic. I had found a program in Dallas that supposedly helps deal with MAV and POTS, however, it is $8500.00! Which I am skeptical about because literally nothing I have done has worked. So, I am worried about blowing 8500.00 and getting no result.
I am just wondering what those who have had a hard time with medications have done? As well, is there anything that could help me differentiate between POTS and MAV? I have done simple testing for POTS but not a tilt table. I am just not really getting any guidance from my providers. They just offer me preventive medication and say that’s all I can do. TIA.
So sorry to hear you are suffering so much and feeling so horrendous. I don’t have POTS but have a very close friend who has both POTS and MAV and many other conditions as well, bless her - POTS was the one that was the hardest to get a diagnosis for her though. You’d definitely need to do the tilt table, even if you know it’s going to make you feel awful. Once she had the POTS diagnosis, she started under a POTS specialist and everything else just followed from there. MAV diagnosis came soon afterwards. I don’t know if that’s helpful at all? I guess I’m trying to say that if there’s any doubt, I would want to investigate POTS to get that either confirmed or ruled out, just because it can be such a debilitating condition and the right care is so important. I’m UK based so am not sure how much treatment would be here, but 8500 dollars is an eye watering sum! But then also I guess two separate diagnoses of MAV is quite conclusive. Is there anything specific that makes you think this could be POTS?
Also, when I first started with my acute vestibular migraine symptoms, I literally couldn’t keep any food down. I was sicker than I’ve ever been in my life and had horrible tummy problems as well. It got so severe that I ended up in hospital having lost a ridiculous amount of weight, scared to death about what on earth could be wrong with me. I was ill at that level for a good three months and have never really had any symptoms lasting for 72hrs max. I don’t get headaches either. Almost a year on, nausea is still my most debilitating and common symptom although I am so much improved from where I was. It’s so hard when you feel like this, especially when we have to fight to get answers. I really hope this episode eases for you soon and you can get some guidance to help you move forwards.
First thing you really must do is to Stop The Panic. I hear it in your words. Anxiety will wind up any vestibular condition so it really must go.
Persevere. Its no easy road but it is the only way forward.
what makes you think you have POTS? Two experts having given you a MAV dx, why POTS? I know very little about POTS but I understand the procedure to establish POTS involves a ECG to rule out heart problems and then monitoring heart rate and BP standing and lying over a given period. That should give a definitive answer. Establishing MAV isn’t as straightforward as that sounds. Its usually based on a detailed history with emphasis on whether there is a familial or personal connection to migraine then MRI to rule out nasties like tumours.
Key symptoms of MAV briefly according to the Medical News Today website which I just happened to have been reading earlier on today are: Dizziness, Vertigo and difficulty with balance but can also include discomfort turning, bending down or looking up, and feeling of pressure in the head or ear. To that I would add discomfort with any head movement and a tight/stiff neck together with, in some cases, all the associated migraine symptoms such as light and sound sensitivity and during acute periods of vertigo associated vomiting etc.
Except you have changed your diet. I cannot imagine anyone would have already been naturally living on the HYH or for that matter any other prescribed migraine diet.
It can sure seem that way at this time in time for sure. Might I suggest you read my diary? I was nauseous all the time for many months. I had regular 8 day long attacks and many of them. Mine went from the traditional 72 hour ones. So regular in timing I could set a clock by them straight to more severe 8 days ones. It happens and they are hell to bear. I sympathise. I don’t get classic migraine headaches. Prodromes or postdromes nope. Live near an aerodrome if that helps any!
And the gut. Yes that’s involved too. I had abdominal migraine type stuff as a girl and a few years into episodic MAV (not that I knew that that was what it was at that time) I had a very sustained bout of what was dx as Irritable Bowel Syndrome which retrospectively I am sure was the return of the abdominal migraine stuff. Like you I am over med sensitive and have a GERD dx which doesn’t exactly help either. Do please have a read of my diary.
As to the route out. With all those digestive issues and sensitivities, and assuming you are in the US hows about asking for the new injectable preventatives? From my experience I cannot imagine you are going to control such strong symptoms without recourse to medication. I am sure I never would have stood a chance.
thanks for the response. So Dr. Teixido actually told me I had MAV with POTS. I was sort of ruling it out until he told me he was sure it was present with my situation. I do have some of the symptoms of POTS- cold hands and feet, my legs go purple all the time when standing. my HR jumps over 30 beats per minute upon standing etc. So, with the HYH, if anything I just eliminated a lot of bad food. I’m not sure why my gut would be angry about that. I was afraid about the medication. I have done it once (as in, really persevered through terrible side-effects) and it was horrid. At the end of it all I was just worse off than before. I have not had an MRI since 2018 and none of the doctors think it necessary. I will look at your journal for sure. Thanks
I’ve had POTS for about 12 years but only officially diagnosed since 2017
You can almost do a tilt table test yourself with a pulse oximeter for £20 and it will give you a rough idea, I used this when I finally was able to be seen by a specialist, he saw this and said yes you have pots before even running any tests.
I just put it on my finger when I was laying down for about 30 seconds kept it on, sat up for 30 seconds, stood up etc then did the reverse while recording it all (I’ll try find the video)
My heart rate ranged from around 68- 158bpm which is the main criteria for a post diagnosis
A difference of 30bpm between sitting- standing heart rate
I was only diagnosed with MAV in NOV 2019 but I’ve had symptoms alongside POTs much longer although the two are quite different
Which symptoms are making you think it’s POTs?
If I can help in any way let me know,
Where in the world are you from
I’m in the UK and know a few of the specialists now! Lol
hi, thank you for the reply. I have been so lightheaded all the time. I go into pre-syncope with my bad episodes. My digestive system is so messed up. Lately, I have started to have problems going from sitting to standing (I feel really light headed) when that occurs. Although, I am not sure if thats more of a orthostatic hypotension thing. I realize POTS and OH are different. My HR does jump more than 30 when I go from sitting to standing. I am usually about 60 and it jumps to about 110. My neurologist said that I have VM with POTS. But then just wanted me to start topiramate. Meanwhile I am just trying to get through the day without fainting.
It does sound very POTs like to me, the trouble is finding someone to listen to you!,
It took a bit of trial and error for me to find balance of meds that finally worked but And increase in salt and fluids are 2 things that can really help POTs and recumbent exercise such as rowing or swimming.
POTS uk is a great website with resources and even guides for GPs to diagnosis.
I feel much more settled with POTs and MAV symptoms in the last few months although I currently have an ear infection which has triggered things again at the moment
I’m currently taking a cocktail of meds but it keeps me going and feeling mostly normal about 90% of the time so I can’t complain.
I take midodrine 10mg TDS and ibravadine 2.5mg BD for pots and 75mg BD Topiramate for MAV
oh and I am in Western NY, USA