Hi Lisa,
Me again, Iām afraidā¦
Thanks for your reply to my questions. Here are some more, if that is okay?
You say you are quite back to normal. Is it a new normal? Are you back to your old self? You mentioned a couple of triggers but barring those can you function like you donāt have MAV? Is that as close as we can hope to getting rid of this monster? Do you know if anyone ever recovers fully?
Now, I have had some improvement over the last day or so. I have upped my dose to 31mg before bed. I feel stoned as hell but a little less dizzy, that is the trade off I guess. Movement has to lead to improvement, I hope.
Should cut back on my pm dose if I add some in the am? I know this is just your opinion, donāt worry! I will make my own decision!
Thanks
Marg
Feel free to ask as many questions as you want. I would say that I am living a new normal because of the side effects that I experience at my high dose. Remember that not everyone on Topamax needs to be on a dose as high as mine. Many people with migraines, according to my neurologist, get relief at 100 mg. I was a tough case and had to keep pushing the dose upwards and along with it came some unwanted side effects. Even with these side effects I am much better off than I was with MAV. I donāt like having cognitive impairment and sedation and problems with attention but I would choose that over MAV any day.
Lately I have been a bit more dizzy (in crowded environments) because of another medication that I have been prescribed. I am not happy about this. It is clear that MAV, at least for me, is always there in the background. When I have these dizzy spells I take clonazepam. I donāt communicate with others but members on MAV forums must know of people that have fully recovered.
As for your dosing find a schedule that works for you and gets you the best symptom control for when you are the most active. I did a lot of fiddling with the dosing at first until I found one that worked best for me. I now take 175 mg in the morning because the days are bad for my vestibular issues and 50 mg at night. It is an odd dosing schedule but it has worked for me. - Lisa
Hi Lisa,
Thought I would check inā¦
Have started taking 37 mg before bed and 25 in the am with intentions of upping next week. I seem to have an okay day and can be fairly active. by this I mean I can go for a walk and do some house work. No running marathons here! (Yet!) The thing is, can you exercise ? Did this evolve with time? Please advise, if you can. I was such an active person and now I get sooooo vertigo when I attempt anything past a brisk walk. Some days a stagger is even out of the question especially if it is at all warm out. This is getting depressing because it seems I am one of the people who gain weight from Topomax. My family doctor likes to lecture me about being sedentary and the horrible health effects. WHAT!!! Your kidding!!! Lisa, you mentioned you were experiencing dizziness again lately. I hope it is a short lived anomaly. You have had more than your share. WThanks again for your time.
Marg
Hi Marg,
I am probably not the best Topamax user to ask about engaging in intense exercise because I have a confounding health condition. Prior to getting MAV in 2010 I would do up to 2 hours of intense aerobic exercise every day and lift weights. When I got MAV I was so dizzy I could not walk straight and I put considerable strain on my right ankle. This injury triggered a disorder called reflex sympathetic dystrophy that now has involved both legs. It is chronic and severe. I am now only able to slowly walk a couple of blocks at best. I do not get dizzy doing this.
Be aware that when you are on Topamax you may have more difficulty controlling your body temperature when you exercise, leading to overheating. This is something to think about on warmer days. You may feel even more lightheaded on these warm days when you exercise. Remember to drink plenty of water.
The dizziness that I experience is a side effect from one of the medications that I have to take.
Lisa,
Me again.
Hope you are doing well. Can I ask? Did you experience drowsiness and spacing out when you increased your dose? If so how long did it last?
Thanks.
Marg
I just wanted to thank Lisa again for being so wonderful and encouraging on this site. You helped me get better because I finally began experimenting with things I was too afraid to and even when I had adverse reactions to some things due to sulfa allergies I have, I then was led along the path of finding a supplement regime that works pretty well for me as long as I steer clear of trigger foods (mainly too much caffeine, alcohol, and tyramine rich as well as MSG foods). My current regime is 400mg of magnesium glycerinate in the morning along with 400mg of CoQ10 (ubiquinol) and occasionally St Johns Wort. Sometimes I ramp up the magnesium if Iām having an off day and supplement with 400mg more in the evening. Triggers mainly are lights for me - fluorescents and CFL lights especially but I do a ton better on these supplements and do not feel the lights the way I used to. I am considering whether I can somehow live my life more outside on a farm but for now I am trying to push through with my office job since I feel pretty good most of the time now. I am operating on a new normal as well and I just have learned to embrace this new stage of my life. It has made me more health conscious and open to people and forgiving towards myself. I used to be such a perfectionist and so anxious about everything but now when I am feeling better I feel like I am very content just feeling fine! Yes, Lisa, it is very nice to go out again - and run and ride. I have to pace myself a bit but Iām pretty much my old self in many ways. Bless you and everyone on this site for the advice and encouragement. I definitely feel like if I could recover from what I felt like was a horrible dark tunnel that would never end, anyone can. Its a more common illness than we think but so poorly understood by most drs even neurologists. There are many paths to recovery but it does seem like it requires modifying diet to some degree and also medicine and/or supplementation.
Liv, Lisa,
I found this post when I got back from Costco today. I came so close to fainting that I ended up sitting in the office. Th y asked to if I was low on blood sugar and I said that I was, it was far easier than trying to explain MAV! IIt is the lights and the odd flows of people and the different sounds, that make me feel like I have the bed spins so bad I want to vomit and faint! Oh, and I have felt like this for years. AND, there is no cure, no real treatment, very few doctors can diagnose this disorder. The doctors who canā¦good luck trying to get in to see one.
I have been taking Topomax and tons of advice from your posts and Lisaās for sure, along with all the others. There is no where to turn for information. Like you Liv, I have borrowed courage from Lisa. I am sticking with
Topomax, NO MATTER WHAT!
Liv, thanks for sharing about your supplements. I am taking Coq10 ,B12, and Magnesium, now. There are different magnesium so, please advise. I asked my doctor who said not to take it at all as it could make me illā¦! Did
I mention, I think she thinks I am making this whole MAV thing up.
If you havenāt already, lookup this blog by Brian Platzer for The NewYork Post Dizzy and Disorriented, With No Cure In Sight
This writer does a pretty good job of telling about MAV in a very well respected widely read publication. It canāt hurt.
Anyhow, after having another horrendous experience, it was nice to come home and read something hopeful and uplifting. Thanks.
Marg
Iām glad you can relate! Perhaps the only bright side of the ailment along with being more health conscious I would say! We should find strength in the fact that many other people (not just those lucky ones who have found this forum and a diagnosis) have this problem and that we can recover with the right regimen enough to function pretty normally again! Liv
Hey Marg! Donāt worryā¦you will feel better once you find what works for you. But I think you do need to accept a new normal no matter what. Life isnāt the same after you get MAV but you do what you can to manage the symptoms. Once I got to this place of acceptance rather than frustration - and viewing myself like a sailboat that needs to have me guiding it like a sailor (with my supplements and lifestyle choices) then I can go along okay in the water. Otherwise, itās like a storm in my head and literally feels like Iām on an ocean. Iām sure other people on this forum can relate to that sensation. When Iām older I might resort to meds but right now with my life plans at 30 I am trying to manage this with supplements and diet/sleep. As for magnesium, I use magnesium glcyinate (KAL brand or Drs Best brand) that works well because itās chelated and it doesnāt cause GI problems. I try to take at least 400mg in the morning and 400mg at night with a calcium supplement in between with D3 in it. I donāt take calcium at the same time as the magnesium due to competition for absorption between the 2. B-2, CoQ10 and St Johns Wort have been the other useful ones for me. Check out Dr Weilās migraine website and also this posting:
P.S. When I overdo eating dairy or calcium rich foods in one day it does cancel out the benefits of magnesium. B-2 and CoQ10 are things I take regularly as well but it may be the magnesium is the key part and I just have variations on how how I feel in terms of a day if I eat enough of the magnesium and not too much calcium. Obviously we need calcium for bones but Iām still trying to keep it balanced w/ my magnesium intake since that seems to be really key.
Hi Marg (and hi Liv!),
I am sorry for the slow reply. I have been away from the internet and did not check my email until today. Costco is a nightmare and I did not venture in there until a couple of years of being on Topamax. I had a terrible incident of having a vertigo attack in a large downtown shopping mall (this was before Topamax) and being trapped there alone for several hours. I became almost phobic of shopping malls or large box stores after that. I still have 0.25 clonazepam as a vestibular suppressant in the event that severe dizziness happens.
As for drowsiness/spacing out I found that my body would adjust a couple of weeks after each titration. I would be so very tired after the titration upwards and I would fall asleep at my desk! But my body would get used to the change and return to normal. At 225 mg I would have to say that I am not functioning like I did with no Topamax on board. I am more sluggish and spacey. However, I am also taking a blood thinner medication because I have a blood clotting disorder so that probably also contributes to the fatigue.
The main thing with Topamax is to take the titration slow. It is a difficult medication - my neurologist said that initially there are many side effects as your body adjusts to it. Over time it does get easier. MAV is a very frustrating disorder because people just donāt get it - they donāt see it so donāt understand. It was the great people that I found on the internet that kept me sane and kept me going!
Hi Marg,
Yes I did have leg side effects early in the titration of Topamax (under 100mg). I had some muscle spasms and my legs felt weak and wobbly - it was a different sensation than MAV. I also had these side effects when I titrated the anticonvulsant Epival. For both drugs the leg side effects were not long lasting. I think with Topamax I experienced everything but the tingling or the dramatic weight loss! - Lisa
Hi Lisa,
I am rereading all the posts in this thread. I refer to your post on Jan 2014. You said that because you stuck with Topomax you could finally stand in a grocery store without feeling like falling to the floor. That is where I am at. Wanting to fall to the floor. I have hope this will pass if I stick with the Topomax. It worked for you and I am hoping it will work for me. Can you remember how much of the drug you might have been taking at that time?
All the small details people post mean so much to everyone else!
Thanks
Marg****
Hi Marg,
things really started to improve for me in the stores at over 100 mg on Topamax. Now remember that my MAV was very severe and you may experience symptom control at a lower dose. Until about 125 mg I honestly thought that I was going to fall over in the stores; with larger grocery stores and malls being the worst. When I was standing in line (or looking at shelves/clothing racks) I had the feeling of being sucked rapidly into the ground.
I avoided the largest shopping malls until I got to 200 mg out of complete fear I guess. My neurologist said that I had to get out and āpushā myself in complex visual environments so that is what I did and it did get easier over time. Some stores still bother me. H&M and Zara in particular are a trigger for a bad dizzy spell (I just feel dizzy - not like I am falling over). I donāt know why - perhaps it is a combination of the lighting, the loud music, having my head down looking at the clothing and the crowds. I often just have to leave!
Hi Zoology,
Great to read your success story. I just joined, because I am trying to find relief in my symptoms. I first developed my symptoms in July of 2012. Worst day ever. Anyways since then my life has been hell. I have developed severe anxiety and panic attacks. I have been to ever single doctor you can think of. They kept telling me I had general anxiety disorder with panic attacks. I have taken Zoloft, celexa, Xanax as needed, pamelor, and most recently topamax. The Zoloft I believe my doctor started me out too high so I bad side effects. She put me on 50 mg of Zoloft and I have never taken a drug like that in my life. It was bad. Celexa worked a little bit for me but after 6 months it wore off and I needed a higher dose I didnāt want to do it so I stopped. Xanax only helps for a little bit of time its short lived. Anyways Topamax 25 mg helped but I have a birth control inserted so it interfered with it an di had bad breakthrough bleeding. I have the bc because I have fibroids and endometriosis. Was on it for a little over two months and stopped it because of that but I am thinking about starting it up again because I am at such a weak point right now. I cant enjoy my life or my two beautiful kids. I am always on edge and it has put a strain on my relationship with my boyfriend. Grocery shopping is hard, kitchen housework is hard. Hell even typing this is hard. I feel lightheaded and dizzy nonstop everyday. I couldnāt even enjoy our Jamaica trip because I felt this way. I deal with it and hide and fight it everyday. Itās liking fighting a war in my body literally everyday. I get so sad and upset I cry to myself this is just one of the worst illnesses ever. I have been to a cardiologists at least 8 times because I am like its my heart, and have had every test done in the book I swear. I am perfectly healthy according to doctors. Which is great! But I donāt feel healthy or fine I feel like shit :(. Sorry this is so long I am just so happy I am not alone and I donāt wish this on no one. Worst feeling ever. I at least wish it wasnāt everyday if it was a few days out the month I could deal with it. Well finally an ENT diagnosed me so I am happy I found out what is wrong with me but I need to fix it and it does start with me. I am just so scared and chicken to take anything and stay with it. I am going to try again taking the Topamax. I might
just get my bc implant taken out because like I said I am desperate. Anyways nice reading your success story and so happy you are better and I wish you stay better. I will try and post updates on my journey. I need to do this for my kids they are my everything and my heart I live for them and thatās the reason I keep going on everyday the best I can. may God help me through this.
DreamCatcher, have you tried one of the tricyclics? I had almost instant success with Amitriptyline. Its partly a vestibular suppressant so is really useful for dizziness control. Apologies to post this in a Topomax thread!
Hi DreamCatcher,
you have been sick with MAV for quite some time now and I honestly understand what you are experiencing. I tried so many different meds - Nortriptyline (Pamelor), Amitripyline, Celexa, Depakote then the Topomax several times because I was afraid of it making me feel worse. I am scared of medication side effects as well. I had terrible panic attacks when I had MAV.
Each person is different and one med may work for one person and not work for another. Many people online got relief from Nortriptyline for example (it is a top drug for MAV that is why an ENT prescribed it for me) but it was useless in the end. Only until I tried the anticonvulsant class of drugs did I find any relief. The problem with the anticonvulsant drugs like Topamax, as you mentioned, is that they often do interfere with oral contraceptives and other hormonal birth control.
I am very med sensitive so I had to go slow with Topamax but the results were worth it. I still take the occasional clonazepam (klonopin) to suppress my vestibular system if I am in a super busy environment like a big shopping mall. Other than that I am so much better than I was when I had full blown MAV. I could not even function.
Yes, Lisa, it is very nice to go out again - and run and ride. I have to pace myself a bit but Iām pretty much my old self in many ways. Bless you and everyone on this site for the advice and encouragement. I definitely feel like if I could recover from what I felt like was a horrible dark tunnel that would never end, anyone can. Its a more common illness than we think but so poorly understood by most drs even neurologists. There are many paths to recovery but it does seem like it requires modifying diet to some degree and also medicine and/or supplementation.