Hi Lisa,
Has your dr. mentioned anything about these hormonally-related crashes? Can anything be done to prevent them??? Glad to hear you went back to your baseline and things are overall really good though- that is wonderful!!! I hope you continue to feel even better as time goes on with the topa!
Lisa- I was also curious about your dr. saying that people can come off their meds and this isn’t forver- is he saying mav isn’t forever? did you ask about ppl relapsing after they come off their meds? from what i have read on this forum, it seems pretty standard that ppl do after a period of time???
After feeling great for 2 weeks on 100mgs of Topamax, I have been feeling like rubish for the last two weeks. Back to thinking through mud. My brain and eyes are very stiff again along with heavy head and all my visuals (the main reason I am taking it) are bugging me again. My anxiety has also been pretty bad. I am sticking with it an hoping for better days to come, but wondering if I just need to up my dosage to get those better days again. This worries me of course because I don’t want to have to up my dosage to my get “fix” all the time. I was feeling so damn confident a few weeks ago, I just want to be back there! This shit is so confusing! And in the back of my mind I always have that worry of messing around with too many drugs and of course needing to come off of them one day… (I am also on 30mgs of Celexa to help with my anxiety over all of this…)
— Begin quote from “awalkerphoenix”
After feeling great for 2 weeks on 100mgs of Topamax, I have been feeling like rubish for the last two weeks. Back to thinking through mud. My brain and eyes are very stiff again along with heavy head and all my visuals (the main reason I am taking it) are bugging me again. My anxiety has also been pretty bad. I am sticking with it an hoping for better days to come, but wondering if I just need to up my dosage to get those better days again. This worries me of course because I don’t want to have to up my dosage to my get “fix” all the time. I was feeling so damn confident a few weeks ago, I just want to be back there! This shit is so confusing! And in the back of my mind I always have that worry of messing around with too many drugs and of course needing to come off of them one day… (I am also on 30mgs of Celexa to help with my anxiety over all of this…)
— End quote
I know this is easier said than done, but I always get the feeling from your posts that you have a massive amount of anxiety going on, and need to tackle that problem before you’re going to be able to notice an effect of a drug like Topamax. It almost sounds like you’re expecting it not to work, in which case, you may end up with a self-fulfilling prophecy. You’re doing what I do too of worrying about something so far down the line i.e you’re worrying already about getting off the drugs, when you haven’t even got on them properly yet! This is totally detrimental and not going to help yourself.
Don’t forget that so many people often find that they don’t experience a progressive linear course of ‘feeling better’ on any drug, more so, a few steps forward, a couple back, a few forward, a couple back and so on… but they get there in the end.
I know ‘this shit is confusing’, trust me. And I know it’s the most frustrating thing too. I hope you can relax a little, see how the Topamax goes at 100mg for the next few weeks, and go from there…
MMx
do you feel like the celexa has helped your symptoms at all? maybe you can try raising that?
I started the Celexa well before the Topamax and it really did help with the anxiety I had at the time which started when all my crazy Persistent Migraine Aura visuals began. Since I started on the Topamax I didn’t want to start titrating up on any other medicines. My Neuro also told me that the Topa could help with some anxiety…
The reason I have been so down the last few weeks is because I had a those two really good weeks and thought I turned a corner. Was hoping I found my silver bullet. The main reason I worry so much about coming off drugs in the future is because my daily visual problems all began when I stared weening off of Nortryptaline 2 years ago. It very well could have just been an coincidence, but in the back of my mind I will always feel like that drug caused this problem I have lived with for the past two years.
And what’s with the anxiety? I can’t walk outside without being bothered by light all day and seeing spots everywhere I look. I really try to calm myself down, but it’s just such a hard thing to live with, and after finally talking myself into trying medication, I just really have my hopes up for something to work. Besides the visual stuff, the brain fog and DP make me not feel like myself, so that also causes uncontrollable anxiety. This is coming from someone who was completely normal 3 years ago…
All in all, I have handled this life pretty well the last few years, my my patience is running thin. Especially after feeling like things are getting better. I’m not giving up or giving in, just in a bit of a low patch here. I have nice, somewhat understanding doctors, but as most of know, none of them ever truly know what we are living with. I just worry that they are throwing medicine at me and not thinking about my well being or future, but you are right, feeling better right now is what is most important. My main worry, and I am sure Nabeel can back me up on this, is that any medication I take will somehow make my vision worse. If that were to happen, my anxiety and overall well being would entirely diminish.
were you on the nortriptiline for MAV then? did it help at all? I get spots in my vision from the nortrip- my eye dr. said they were harmless and just a side effect of the drug, and that it wasn’t hurting my vision. have you tried anything else besides these 2 drugs? do you think the celexa helped any of your mav symptoms or made any worse?
Yup Aaron totally understand where u r coming from. I feel so stupid that I need to take a bloody anti depressant to control my fear and anxiety which never existed b4 all this hit me. I am also afraid of my visuals getting worst on a medication or when coming off a medication. For u I will simply advice to stay on the topa 100mg for 3 months. The fact that u 2 whole week’s of clarity shows that the drug is working for u. if after 3 months nothing happens u shud consider upping your dose. Remember on the topamax u can go up to 200mg for migraines. For epilepsy the recommended dose is much higher so u r currently on the safer side. If however u do decide to get off any meds, its Better to do it v v slowly. Our brain is already in hyperactive mode more so with the visual crap. We don’t wanna make changes too fast and let it get screwed further. Thats my analogy. Hope it makes sense
I was on Nori for POSSIBLE MAV at the time, but to be honest I think it was just Vestibular Neuritis. Kind of like the moderator Scott, I think my VN led to a complicated migraine variant. I do not think I have MAV per se. I do not have any dizziness, just imbalance. I do not have any spells. Everything I have is constant. I do not have classic migraine aura, what I have is more like Visual Snow Syndrome, as in all my visual symptoms are 24/7. Here is an idea of what I am living with:
medpagetoday.com/MeetingCoverage/AAN/32416
psychologytoday.com/blog/ove … isual-snow
It is not as simple as a few spots I see or something that comes about once in awhile during a migraine. It’s all day, every day. I have seen many doctors and specialists and of course they say they don’t know what it is and that my eyes are perfectly healthy. The thing is, I didn’t have this shit for 28 years and I also do not feel right. I know it’s not normal. Through years of living with it, and all my personal research, I know that it is somehow linked to migraines. My current Neuro (although my last Neuro did not agree) also feels migraines are somehow involved, but he isn’t sure why and also does not have a lot of experience with these exact symptoms. He’s simply following the books by trying Topamax a first line of defense. I don’t mind this as it Topamax was my first line of defense too.
Neither the Topa or Celexa have made anything worse currently, but neither one has helped much. Like I said though, I did have a few weeks where I was feeling very optimistic and felt like things were making a turn for the better.
Nabeel and I are in a different boat then most on this forum, even though we share many of the same symptoms. I would say that the first year of this mess I was very much like many on here, but once my dizziness subsided, and the visual stuff ramped up, I became more and more confused. We have luckily found others like us in a few places where we meet to talk much like this forum:
thosewithvisualsnow.yuku.com/for … NzUqYV8uE0
facebook.com/groups/2290202 … ts&fref=ts
Unlike this forum though, very few people with VS Syndrome ever find relief.
Nabeel, I totally hear you man. I’m sticking with the plan on the Topa. I put too much time into it to give up now. I will stick with this dose for now and then move up if I need to. I will ask my GP or Neuro next time I see them about what I can do in the meantime to curb this anxiety I have. Perhaps it is a side effect of the Topa… who knows?
you may want to ask a pharmacist about the eye symptoms and meds- they tend to know more about this than drs. nabeel don’t feel stupid about needing an antidepressant- do what you need to do- i would KILL to be on an ssri to help with this but they make my symptoms way way worse.
I forgot to mention- when I asked an opthamologist about the spots, he said it could be from dry eyes and recommended using drops and taking fish oil everyday- it didn’t help me, but might be worth a try.
Sarah, no offense, but I have obviously covered every angle for my eye problems. I stayed away from drugs for a full year after the Nori and once these visuals began. I only started the Celexa because my anxiety couldn’t handle the visuals any more. I am now taking the Topa to try and combat the visuals. If the Nori started the visuals, I didn’t have them while ON in, just when I started coming off it. My doctor who prescribed, as well as every doctor I have seen since, as well as pharmacists (and someone on a Nori hotline) all said that the drug would not cause these problems, especially after staying away from the drug for up to a year… Many people who develop these visual problems get them and have never used a prescription drugs before. It is possible that the Nori was perhaps combating some migraine activity when I was on it, and when I stopped using it it triggered something in my system, but who knows?
Been using eye drops and fish oil for years now… I think that is just some script that eye doctors read to make patients feel better when they leave the office…
Sarah
what Aaron and I going thru is persistent migraine aura aka visual snow syndrome. many r born with it, many get it out of the blue like Aaron an I and very very few recover from it. For some it also gets worst with time. U can find out a lot of info about it if u type it on google or YouTube. Currently there is no known cause or cure for it but evidence is pointing towards migraine. there is research going on but unfortunately not enough funding bcz its a very rare disorder. Drug companies that provide the major chunk of research funds are only interested in looking for cures for medicines that will b sold the most making the research commercially viable for them. Sad but that’s how the world works today. I would b lying if I said that I cannot live with this condition. I know I can cz thank god I am not blind and no1 has ever gotten blind with this condition so far. However its a bloody nuisance to accept it as I was fine a year ago and all of a sudden one day I have to deal with this crap. This brings on massive anxiety. The cymbalta that I am taking has helped with the anxiety and vertigo both but not completely. Until then, I gotta look for another med that works
Hi Aaron,
Having read all your posts now, I can see why you’d be so anxious, especially given your history of when the visual stuff started. It’s completely understanable, and you’d be super human not to have those things mentally affect you. Do you see a counsellor at all? I saw one for the first year of this illness- it massively helped me deal with my emotions over this thing. Was expensive but as I wasn’t going out much, the money wasn’t too much of an issue. I recommend it.
What you and Nabeel describe as persistant aura… you do seem to be ‘different’ to a lot of us here, but as it became apparant at the London meet up a few weeks back- a lot of us have varying symptoms between us- 1 person has something another has never experienced for instance- I believe “MAV” is a massive umbrella term and actually is perhaps not the best definition- we all seem to end up under it but basically we all have a variant of migraine, which can manifest itself in hundreds of different ways. Unfortunately for you it appears to mainly manifest itself in the visual field 24/7. So I wouldn’t necessarily say you ‘don’t have MAV’, I would say perhaps our name is slightly misleading.
I’d also like to point out to you that when you say “I do not have dizziness, just imbalance. I do not have any spells. Everything is constant.” … It’s not an argument against MAV. The description of how people feel is subjective, so I’m sure a lot of people would say they feel imblance rather than dizzy. Also, before I got myself under control, I didn’t have spells either, it was constant.
Nabeel- I totally agree with you - the fact Aaron had 2 weeks of clarity shows the drug is working. You should so keep that in your mind. That is a MASSIVE step forward for you.
I really hope it picks up for you again.
Constant visual snow must be an absolute horror for you both, I rally hope there is a breakthrough around the corner for you both. x
Hi Sarah,
In response to your questions…
Unfort…nothing can really be done when it comes to the hormones =*( However, taking meds will help us recover quicker if we do have a crash. Our hormones are so up and down… so sometimes doctors decide to put women on the bc pill. For me, I believe this made my MAV worse, way worse. I believe it triggered my MAv into a chronic phase. For some women it will not do this, for some it may make it better. So for me… I am shit out of luck for now.
When it comes to taking meds for mav, my doc said I will not need to take them forever, but I will most likely have MAV forever. However, I may be able to control my MAV without meds once I get it under control. We shall see.
Lisa
Yes MM, constant visual snow is a pain in the butt and takes a long time to get used too. I am getting there, but its been a long road.Thanks for ur support