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Update on me


#21

This is a fairly newer test that is offered here in the U.S. Unfortunately, my insurance wouldn’t cover it, so I paid for it out of pocket, but it was very worth it to me because I have been suffering with this for 17 yrs. I have pretty much had enough at this point, so I wanted to eliminate the middle man and not do drug trials for months on end and get no where. This way I can start something that will work well with my DNA and something that my liver metabolizes properly so I can try to move on with my life and get better


#22

Quite right. Really hope you get something to help. Drugs are such a lottery and there are so many preventatives to try and combos. You are doing exactly the right thing. I’m allergic to some very common meds so tend to be med phobic so this would be a great option for me. Thanks for letting us know. about these tests. I’ve found a couple of places here in the UK that offer the tests privately. Very pricey but perhaps that’ll come down a bit in the next few years.


#23

I hope so too for you guys in the U.K. It gave me a peace of mind knowing that I could avoid some adverse reactions and not worry about crazy side effects. I stil start all my meds slow though and work my way up. I did that with my diabetes meds as well as how I am currently trialing propanolol


#24

I am on my second treatment as well. After the second week I begin to feel almost normal! I am sensitive to medications, so it really helps keeps my dosages low.


#25

Has the Botox helped you with your dizziness or just headache?
Jo x


#26

Do you know the name of this test? I would like to get this done. I just don’t know how to request from my doctor. Thank you.


#27

It has helped with the dizziness and ear pain. I experience much less burning in my left ear. If I have a normal painful migraine, oddly the dizziness goes away completely. It seems like it is one or the other. I also have to be careful of food triggers. Regardless of what I am taking, too much citrus or artificial sweeteners will make me miserable, as will being a passenger in a car.


#28

Ear pain and dizziness, along with nose pressure are my main symptoms. :pray:
Please let this drug be my silver bullet
Jo x


#29

The gene/drug test? There are a couple of companies that do it. One popular one is called Genesight. I did the Oneome one which was created by the Mayo Clinic. My Dr wouldn’t do the test for me. I had to pay out of pocket. Many regular medical Dr’s won’t run the test. It’s mainly psychiatrists that run them when their patients have failed many drug trials. I decided just to pay for it myself because I didn’t want to try many different drugs and get discouraged or end up in the ER with awful adverse reactions. Depending on what state you live in too, they may not allow you to have the test done yourself. They will only allow a Dr to administer the test. I was lucky that the state I live in just passed a law that allows you to get it done yourself. Most of these tests run anywhere from $300-500 in cost. Also if your Dr does agree to run it, most of the time you have to pay upfront and then the Dr will send in the necessary documentation to your insurance in order for you to be reimbursed. Good luck! It gave me a peace of mind and it is good to know what meds to stay away from.


#30

So great ur doing better :slight_smile: long may it continue could I ask what is the gene test called I’m really interested in this ?


#31

See if I have this right?:

I pay at least £400, possibly £1300?, and they can tell me the exact dose of any medicine I mention is optimal and what medicines to avoid because I will have bad reactions to them?

Given nearly all medicines have negative side effects (and certainly all the MAV ones sadly), what do they consider a bad reaction?

Are we sure about this?

MAV is a committee diagnosis and probably has multiple causes. It seems only trauma is one obvious cause, no-one seems to know any other causes (not that they don’t exist). Migraine doesn’t count as a cause in my book, it’s a symptom (what’s causing the migraine?).

Call me cynical but given medicine has yet to determine what MAV actually is, what the aetiologies are, why would I trust a commercial company to give me accurate information about medicinal dosage?

Doing this the direct way within a couple of days I realised Propanolol was not for me and instead I took Amitriptyline which was brilliant for me - within 4 days. That cost me one failed prescription (~£9). That’s a lot less than ~£1300?! Appreciate I may have been one of the lucky ones in that respect.

Very glad if this helps someone, but it’s certainly not cheapest route?

The reason the US might be seen to be ‘ahead’ is that they have a much more commercial scene there are private companies are going to be marketing products aggressively, making all kinds of claims - you just have to see their TV ads! I’d like to know what the UK medical authorities think of such tests and their usefulness.


#32

Genesight Pyschotropic @Amylouise. All came as entirely new ballgame to me but, never one to resist a challenge of trying to get to the truth, I found this.

It seems these tests were designed for people with depression, anxiety, bipolar, panic disorder, PTSD, OCD and schizophrenia and analyse 12 specific genes against 55 different medicines including, as might prove convenient for MAVers, amitriptyline, noritriptyline, Effexor, Propranolol, sodium valproate, etc.

In the above it does state its conclusions are solely based on people with depression being treated for depression and wouldn’t apply to those with say schizophrenia, so cannot really understand how this would relate to MAV somehow but,I don’t pretend to really understand the concept at all.

I’m always concerned about people ‘jumping on the bandwagon’ and trying to fleece chronic illness sufferers. As you’ve already proven you didn’t get on with Propranolol but you did with Amitriptyline, would be interesting if you could only be tested to see if it drew the same conclusion.

I’ll second that one. I suspect they’d find it much cheaper to continue ‘trial and error’ system and be quick to condemn it.

Interestingly, read over the week-end, a paper on preventatives which said one should expect response from amitriptyline within 4 weeks but Propranolol can easily take six months! Think you and I probably proved that one! Helen


#33

That makes sense and good to know. I wasn’t patient enough clearly!

This deserves a Topic of it’s own.


#34

What with the Propranolol you mean? Did you react to it, side effects or, just didnt think it was working? There’s more to finding suitable drug than one imagines isn’t there. All so subjective. Side effecfs can seem grim and intolerable until you hit the next drug sometimes and find worst.

I’d have probably asked for something quicker, if I’d only known. Sometimes ignorance can be bliss. After 2-3 months of no improvement I found Dr S saying ‘70% better after nine months’, marked it up on the calendar, and started knitting that long scarf! I’m a slow knitter. Helen


#35

Side effects, very strong ones … couldn’t run, walked at a crawl and felt like an old man with a heart/lung condition making breathing more difficult almost immediately. Was almost scary.


#36

do u get asthma? Heavy smoker? Chest problems? Normally.


#37

Nope, normally 100% healthy. Boring like that :wink:


#38

Thats odd then. Pity too. Must admit these days, very occasionally I think it’s slowing me up a tiny tiny bit, but I do take enough to floor an elephant of the stuff, but nothing like that you exp. scary! I dont like side effects from drugs.


#39

Yeah, I still get that from time to time on Verapamil. Took a few months to get used to it I think. Its awful. My theory is that it can surpress noradrenaline which is responsible for opening up airways and lungs.


#40

Thank you so much for sharing this information. I’m on the path of being diagnosed. Doc say I have VN/labs, but i feel that due to my constant visual snow, after images, eye floaters, i may have persistent migraine aura also because i had terrible migraines/headaches at the beginning. They went away once i started doing the migraine diet. I’m seeing a neuro otologist this month and asking for a firm diagnosis, hopefully. Before i am prescribe meds, i am going to take this test to make sure they are interacting well with me, just like you did. I checked the Oneome and I can take it. Yay! I live in Cali, it looks like they dont send kits to NY and outside the US. Again thank you so much. I hope the meds help you and you start to feel better.