What has MAV taught you?

Hey there,

Just curious what people have learned since their MAV started. I know MAV sucks, and it has truly brought me down to some dark places. However, I’ve learned a lot about myself and life since I’ve been going through this. You see, before MAV started I would worry about the littlest things. In addition, I would get depressed about my life not going the way I wanted it to. Now that I’ve been going though this…I realize how lame it was for me to be depressed or to worry about the little things. It sucks that we have to go through something like this for us to realize how good we had it. But, maybe in the long run we will see this as a gift in this in some way. Has anyone learned a lot about life while going through this? I know I’ve become more humble and have lost some EGO and fear since this has started.

It has taught me to be more empathetic towards people suffering from any chronic illness and taught me what really matters in life. I too used to worry a lot about so many things in life and now if I could have good health I would be the happiest person alive.

Ah guys I couldn’t agree more…if I could be healthy I would never argue over silly things or stress ever again…seriously health is the greatest gift!! x

i used to stress out about not being in a relationship or married, my weight, stupid work problems, my skin, some mild ibs that i have, etc. just stupid nonsense who gives a crap if you are married when u can barely walk right??? i already had fibromyalgia which already taught me empathy for others with health probs…i really didnt need this shit on top of that- the empathy box was already checked, thanks. Before the fibro i definitely didnt have empathy for others with health issues, mobility issues, etc. but it certainly taught me that.

Sarah…so sorry, I feel exactly the same…xxx

its taught me not to judge people just b/c they have an illness that you “cant see”…i seem to be more tolerant to strangers that i would normaly loose my patience with. :oops:

& my grown son really does worry about me… :wink:

Good question!

The standout for me has been learning to separate the wheat form the chaff when it comes to treatment and strategically planning how to become well again. The internet is full of junk science, quacks, kooks and cranks who all serve to cause a huge distraction from achieving the objective of migraine management.

I hope this forum has made an impact on this problem and provided a place to get the right information so everyone can get on with enjoying their lives again.

scott this forum is invaluable- I honestly don’t know where I would be without it. I would be completely clueless and have zero hope of improvement- the positive stories on here are the only thing keeping me going- my own dr. is really pessimistic about my treatment.

Thanks Sarah – why is your doc pessimistic? That’s not good! :?

Well I have tried a lot of meds over the past 2 years- but I have only given 5 a fair trial- I partially responded to 2 of these. I am going to start atenolol next, and he said he is pessimistic that anything will help me at this point because I haven’t had a lot of success yet. I have tried 3 seizure meds, 1 calcium channel blocker, and now atenolol. But I said to him that I partially responded to 2 out of 5…and that there are several meds in each category, right? He agreed that there were- so I don’t understand why he said what he said…I get the impression that he is going to give up on me after this next drug which scares me. He knows I am severely disabled by this…why wouldn’t we try all the drugs available??? It is so scary and discouraging to hear this and if he is going to give up on me I hope that at least he can refer me to another neuro in his hospital who might have more ideas…this guy has never been that confident with mav treatment to begin with…it is really scary as a patient.

I said to him- with the 3 seizure meds i tried- 1 made me worse, 1 made me better (but it wore off), and 1 had no effect- so maybe the others in other categories will be like this- if one doesn’t work, that doesn’t mean that the other 3 or 4 won’t, right???

Hey I’m brand new and all …but this site has kept me afloat since February. When it first hit me, I would constantly say to my hubby that I will NOT live like this. I just won’t. I am NOT going to suffer from fibro and now THIS-whatever it is- Hell NO! He took it to mean I was suicidal…(truth be told, on REALLY bad days-- I won’t say I didnt think about leaving this world…but I’ve had people close to me end their life and I’m not about to put people I love &love me through that) Anyway, I did say those things in a hopeless despairing way…but NOW even without meds and a dx, I can say I will NOT live like this, I just won’t. But this time I mean it like I am a SURVIVOR, and a fighter! I won’t surrender to it and let it have me. I know I will have times that the day will completely SUCK and I’ll be wrecked. But then there’s tomorrow. I can try to see SOMETHING good in each day. No, things will never be the same for most of us…but we’ve all grown from it somehow and if not, we will…and we will be able to help others–the way some of you have helped me! I hope to pay it forward somehow when I’m in a better “place” in my journey. The knowledge and compassion here are priceless.
May we all remember that tomorrow is a brand new day 8) and I hope it’s a less dizzy pain free one!
Shell
p.s. I used to always say "I have Fibromyalgia it doesn’t have me. I guess I will add whatever this madness is to that sentence!
Peace!

I’m writing this cause im concerned for my sister shes suffers from Dizziness… It all happen at work… she was typing in front of the computer and all of a sudden she starts getting dizzy and had a panic attack… She noticed that it lasted 24/7 and still has the dizziness its been going on 2 months and her dizziness is 24/7… she says i can handle the migraines but the dizziness wont let me do a damn thing…Shes has gone to a Cat scan, Mri, Cardiologist, and came back normal…Shes says she feels numb on both sides of her cheeks they ruled out Ms…She cant sleep at night cause she feels it wakes her up like its a tugging feeling like your falling…Shes start to lose hope and it worries me… A neurologist has prescribed a pilli forgot to mention the nero prescribed this medicine called Topiramate 25 mg…Topax is the brand name… Meclzine but that takes 1 month to work… So in the meantime she cant do the things she used to do…She said her dizziness feels like someone is pushing her on her back…she has to hold on to the walls at times…I could tell shes tired of this and its driving her crazy… Please Help! Whats our next step? Will this be her life? I mean her dizziness or is their a magic pill to take away this dizziness… I need advice please…

— Begin quote from "Shell"

Hey I’m brand new and all …but this site has kept me afloat since February.

Same :slight_smile: Thank you everyone x x

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When I was well in December, I think I told the dizzies who were at our first meet, that I was kind of glad I had suffered MAV as it had completely changed my attitude towards life with regards to gratitude for the small things. People should be so grateful to just get up in the morning, feel alright, and be able to walk in a straight line, and function without being in pain, without being dizzy and without being ridiculously fatigued.

I really feel that living through this hell has made me a better person, as wanky as that sounds.

Having said that, what a retarded thing to say- I am not glad I suffered MAV- I clearly had too many vinos that night.

It’s changed me in so many good ways, but it’s also changed me in a few bad ways- I am even less intolerant of people now for example- If someone complains of being tired I have no sympathy because they don’t know fatigue like I do.

— Begin quote from "debthecrab"

I’m writing this cause im concerned for my sister shes suffers from Dizziness… It all happen at work… she was typing in front of the computer and all of a sudden she starts getting dizzy and had a panic attack… She noticed that it lasted 24/7 and still has the dizziness its been going on 2 months and her dizziness is 24/7… she says i can handle the migraines but the dizziness wont let me do a damn thing…Shes has gone to a Cat scan, Mri, Cardiologist, and came back normal…Shes says she feels numb on both sides of her cheeks they ruled out Ms…She cant sleep at night cause she feels it wakes her up like its a tugging feeling like your falling…Shes start to lose hope and it worries me… A neurologist has prescribed a pill Meclzine but that takes 1 month to work… So in the meantime she cant do the things she used to do…She said her dizziness feels like someone is pushing her on her back…she has to hold on to the walls at times…I could tell shes tired of this and its driving her crazy… Please Help! Whats our next step? Will this be her life? I mean her dizziness or is their a magic pill to take away this dizziness… I need advice please…

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I am by no means an expert, but this could very well be MAV. What she is experiencing sounds very similar to what myself and many others on this forum have experienced.I was also prescribed Meclizine, then stemetil. Didn’t touch it. If it is migraine related I don’t think that those meds are to be recommended. I think it may be worth asking for a referral to see a MAV specialist. I have been suffering with this since January, went to see a guy who’s pretty well respected in this area and am beginning to improve. There is hope so please let her know that. I am sure other people will post a response to your question and be able to advise you further. I am very new to all this so am still learning but the people on here have honestly helped me through a very difficult time. There is also a lot of really helpful information/links to research papers on this site which are worth taking a look at. So have a good nose about!

If you let us know which area you live we may be able to advise you who to see. Are you in the UK? I am in Lancashire and I see Dr. Silver, he has helped me a great deal and really knows his stuff. You can see him through the NHS or privately in Warrington. I called his secretary and got an appointment within 2 weeks. It was £385 for the consultation but worth every penny.

Dr Surenthiran (think I’ve spelt that correctly!) He is based in Kent and is also highly regarded in this field.

If you are not in the UK or would find it difficult to see either of these Drs I am sure that other people will offer you some recommendations. It is not important that she sees the ‘top guys’ but it is important that she gets the right treatment.

Good luck x x

Kathy we live in the Usa…i forgot to mention the nero prescribed this medicine called Topiramate 25 mg…Topax is the brand name…and thats for the Mav… And yes they said She had Mav… Is there a Mav Specialist? I didn’t know… But will look into it…Shes under the care of a neurologist… So the neurologist advised my sis if those medicines do not work she will be prescribed something else… Thanks Alot!

This thread has gotten sort of out of control but this is for Shell- I have fibro too and several of the mav meds can also treat chronic pain- for example, nortriptyline, amitriptyline, effexor, cymbalta, gabapentin, lyrica, topamax, etc.- are you currently on anything for the fibro?

— Begin quote from "debthecrab"

Kathy we live in the Usa…i forgot to mention the nero prescribed this medicine called Topiramate 25 mg…Topax is the brand name…and thats for the Mav… And yes they said She had Mav… Is there a Mav Specialist? I didn’t know… But will look into it…Shes under the care of a neurologist… So the neurologist advised my sis if those medicines do not work she will be prescribed something else… Thanks Alot!

— End quote

Sorry Deb, for some reason I missed that she was taking Toprimate?!! It is supposed to be a very effective drug. Topiramate is my neurologists second choice of drug for me. It may well have been his first choice, but when I went to see him I was already taking propranalol, so he didn’t see any reason to stop it. When I return in June he may well add that to my concoction of drugs! (Not entirely sure if you can take the two together but think you can!) Anyway, he said to give the propranalol 3/4 months, after reaching the highest tolerated dose, to expect to see results. I assume that you would need to be on the Toprimate a good while before seeing results. I am not at home at the moment but I will take a look at the letter he wrote to my GP, there is a section about Toprimate so will post any useful info later on. I do know that if she experiences any bad side effects then she should get back in touch with her neurologist. As with all meds, some people can tolerate it, some can’t.

With regard to MAV ‘specialists’, from what I have read about other people’s experiences, it does seem to be that some neurologists are more clued up than others. I do know that there are plenty of people on the site from the USA and hopefully they may be able to help you further. Toprimate is a recommended medication for MAV so she may well be on the right track :slight_smile:

Kathy x.

I notice you have started a new thread about this topic so will post there instead.

Thanks Kathy shes been taking it 5 days… So she just started with the medication… This is so frustrating and my sis who is going threw this hell hole… You’re so kind…Kathy… Deb from Usa.

i just now wrote a post about how just a month ago i was suicidal and now that i am feeling better i am super happy wanting to live life to the fullest. mav or what ever the hell is wrong with me has taught me that life is short and stupid little fights or things that i complain about are stupid and a waste of living. i have been making amends with people i had fights with. i am trying to not get upset about little stuff like annoying people, or kids not listening. none of it matter. just this life with the people we love. you never know when things can get seriously screwed up so enjoy the good now.