I was tested by an allergist after I started to develop severe joint pain over time, sores in my mouth and on my back, as well as massive hives on my face that nearly blocked my airway (I had to carry an Epipen). I also had severe eczema. I tested positive for a flour allergy (this is different from celiac disease), potato, tomato (the whole nightshade family of plants), berries, soy, and benzoate (a common preservative). I am also lactose intolerant. Well once I cut these food items out the hives and eczema and other symptoms went away.
However, I went on like this for most of my life before I was properly diagnosed with allergies. Looking back I can remember that I had brief āspellsā of dizziness not long after I got my allergies under control that were the precursor of full blown MAV (that feeling that the ground was giving away). At the time I thought it was low blood sugar but it always happened in busy visual environments. A few years later true MAV hit. I wonder if years of chronic allergy did play a part - Lisa
Thank you again! Thatās really interesting to know about nightshades and your allergy to flour, potatoes, soy, berries and benzoate. Honestly, I really should get tested. Iāve just been focusing on getting the right meds but itās also important to figure out what foods are making me ill.
I definitely am hypersensitive to things now that I have MAV and depending on what I each day, I might have a better or worse day with the MAV symptoms. It does seem that perhaps some underlying allergy contributed to the onset for me too.
My sister has psoriasis thatās really bad and she thinks that when she doesnāt eat gluten, the rash gets better - and my other sister who has migraines (but not accompanied by as bad vestibular symptoms or light sensitivity as my MAV) thinks that gluten triggers her migraines.
I hope that you are having a great week and thank you again - Iām already feeling quite a bit better on a mixture of topiramate and nortriptyline, even at a low dose.
Itās not perfect and some things still really set me off (today it was really loud music at the gym), but I think that my MAV symptoms hopefully will become more manageable with the proper diet and med dose, and Iāll hopefully be able to start to enjoy things more again!
Thanks again for your advice about Topamax - youāre really a lifesaver about this drug, since itās encouraging me to stick with it. I think since winter break is coming up and Iām seeing my neurologist on Wednesday I will begin titrating to 50mg and go upwards to try to stabilize a little bit at a higher dose before I have to go back to work in January!
I wanted to mention that something else caught my eye about your posts - that you found clonazepam really helpful when you were titrating? I definitely want something to help smooth out the ride if possible - just to lessen some of the anxiety I feel about this whole condition and then the med side effects on top of it. Titration isnāt easy!
Nort. was helping a little bit with that (since it was sedating) but it was really slowing down my metabolism dramatically and causing me to retain water, so I stopped it, and Iām feeling very anxious again.
I think clonazepam might be a really nice drug to take perhaps at a very low dose daily (so that itās not addictive?), and I wasnāt sure if you had any advice about the clonazepam in terms of how often you took it during titration on topamax?
I was also wondering if you still take any clonazepam - or once you stabilized at 200mg of topamax you found you didnāt need it anymore? Thanks again! I really appreciate all your help.
Hi Olivia,
I was on clonazepam long before I was on Topamax and I had a terrible time getting a prescription for it. I think getting illegal street drugs would have been easier! I donāt know what country you live in. I have read on some forums that in some European countries benzodiazepines are nearly impossible to get. I live in Canada. I went to several doctors with academic literature (I have a background in research) stating the benefits of a benzodiazepine for a vestibular suppressant. At the time my MAV was out of control and I needed something to help calm my symptoms down until the drugs that I was trialing started working. I finally found a doctor that gave me 0.5 mg clonazepam. Some people on this forum use Ativan. I prefer clonazepam as it lasts longer. I found it helped greatly.
When the Topamax started working the 0.5 mg was too much - very sedating. I went down to 0.25 mg clonazepam and only use as needed when I am in a very stimulating environments. I donāt know what it is about loud clothing stores in malls. Sensory overload I guess - at least it keeps me from spending all my money!
I have not abused the clonazepam since 2010 (people worry about being addicted to benzodiazepines). My dose has decreased and I only use it periodically as necessary.
I would strongly suggest asking your doctor for the clonazepam. Be assertive. If they had to live like we do with MAV they would be popping benzos like candy. - Lisa
Thanks so much for your response! I totally agree - doctors who donāt have MAV donāt understand how cruel it is to say that itās better not to have anything at all than to risk addiction to something like klonopin. I think I can use it in a small enough dose that itās not going to be addictive. Doctors also regularly prescribe klonopin to depressed people, so why not give a bit to someone who really needs it in an environment that is hyper-stimulating who experiences extremely distressing physical symptoms from it? I think it would help me get through the next few months of titration on topamax a bit more smoothly.
Iām seeing my new neurologist today (my other neurologist is on some visiting fellowship now, so Iām a bit nervous about transfer of care to someone I donāt know) but sheās a woman, and Iāll hope for the best with her being understanding and giving me .25mg clonazepam as needed for when Iām in a very stimulating environment with lots of screens and lights - and flying and travel is also kind of a very nerve wracking situation with this illness. I hope that when Iām at a high enough dose of topamax and stabilize on it, I wonāt experience the symptoms as badly anymore!
I just started up 50mg of topamax again - feeling good this morning and excited to get to higher doses of this drug and have it dampen my nerves responses to the triggers.
I got very upset when I got back to my family home for my Christmas vacation last night because my family had changed all my house lights to CFL lights - but they understood that I needed them changed back to incandescent light bulbs for the time being - hopefully at a higher dose of topamax I might not be so sensitive to flicker at some point down the line, but for now those twirly CFL lights they use for environmental reasons are like my kryptonite! No one understands this but people with MAV!
Have a wonderful Christmas and great start to 2016 and thank you again for everything. Iāll keep you posted about how I do in the coming months!
Hi Olivia,
I hope your neurology visit goes well. I still have a few issues with lights. Even at 200 mg Topamax the lighting in our Costco stores here can set me off depending on how many triggers I have going. A flashing light can still make me feel feel very weird. For example, some people put those flashing lights on Christmas trees. I absolutely cannot look at those. Prior to MAV I had no problem with them, now I have to leave the room or look away.
When my MAV was very severe and I was very troubled by fluorescent lights I purchased glasses online called Theraspecs. They are meant to reduce migraine headache severity. They are not the most fashionable but I found them helpful when I was sitting at my computer screen in an office or out in stores.
Have a great and relaxing Christmas and if you need to ask any questions please feel free to write! - Lisa
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Thank you!! Yes, I have a feeling I will never be 100% the same regarding lights and other triggers but topamax thankfully does still some of that rocking sensation already - before I always felt like I was at a slant.
Artificial lights are the worst - ironically modern society has given us drugs to help with these symptoms but invented lights that make them worse. Iām just glad that natural light is not a problem for the most part, so I can still enjoy nature!
Iāll be in touch! Have a relaxing Christmas too,
Iām so sorry to keep emailing - one last question! Did you experience any time of scratchy throat/sore throat (kind of like the feeling when youāre getting a cold) along with a runny/sneezy nose when you were titrating topomax?
I think that this is listed as a common side effect of topamax (cold-like symptoms) but Iām hoping itāll go away! Since I titrated to 50mg of topamax, my nose is already pretty raw from having to blow it since itās running so much.
Thankfully 50mg is helping with some of the light sensitivity but I have a feeling Iāll keep going upwards in dose to try to dampen the symptoms more.
The meeting with the new neurologist went well - sheās nice and wants me to stay on 50mg for another month and then go up to 75, 100, etc. each month if I feel that would be useful. Itās very interesting that so many people on this forum say they are helped so much when they get to 100, my only concern now are these cold-like symptoms that are so bad.
No clonazepam āas neededā prescription from the doctor unfortunately (would be very useful for some situations!!) but I have an appointment with my regular doctor tomorrow and will ask her for that if she would be willing. Thank you again for your advice!
Hi Olivia,
I did have a mild sore throat (no runny nose) when I started Topamax. My biggest problem was a chronic cough that lasted an entire year. It was severe at night and I barely got any sleep. It was so bad that I nearly had to go off of Topamax completely. This side effect finally went away.
As for the Clonazepam I think the only reason that I am still successful in getting it prescribed is that my doctor also suffers from migraines with spells of vertigo. Not as severe as having continuous MAV but he understands how horrible this condition is. I wish all those doctors that said ānoā to me about the Clonazepam could have spent one day in my shoes when I was at my dizzy worst trying to function at work with the floor feeling like it was falling out beneath me and my head spinning.
Your current side effects will probably lessen with time as mine did - it didnāt happen quickly but then one day I realized that my MAV had greatly improved and that many of the side effects had gone away. For me it was a very gradual process - Lisa
You are so kind in reassuring me and encouraging me to stick with it! Iām going to keep the long-run benefits in mind (honestly MAV is intolerable so I have to take the step forward toward getting better now by staying the course with topa). The hard part is not knowing whether things are just cold/flu symptoms or side effects! Iām glad to hear that most of the side effects gradually went away.
I managed to get some Xanax (for whatever reason doctors seem more comfortable with that one, but it wears off faster Iāve read) from my primary care doctor for flying and situations with more stimuli that make me dizzy - only a bottle of 20 pills but I might be able to get more to use āas needed.ā I met up with a girl in NYC who is in her 20s who has MAV as well and all the same symptoms and is doing okay on 30mg of nortriptyline and 100mg of zoloft, but I have a feeling that she isnāt really addressing the root cause of the problem (over-excitability of nerves) and rather those medicines (while they helped me too) are more palliative in blunting your bodyās receptors so that it doesnāt really know whatās going on. Thank you again and I will remember that this is a gradual process. Merry Christmas!
Zoology,
Your post is the one I read and reread when I find I am losing all hope of feeling better. I have had MAV for five years.Same as everyone elseā¦sudden onset hell.
I went through a lot until last spring I found a young neurologist who diagnosed MAV! I was so grateful. She gave me Topomax. 100 mg at bedtime. This has been one hard to take drug! It made me faint.
Owing to your shared experience I am trying again. I have been doing this for 4 months and am at 20 mg. No fainting but not feeling great ! At what strength did you feel better? Is dizziness more common at lower doses?
Thanks!
Hello Postiemarg,
I am so sorry that you are dealing with this horrible disorder. Last week was my 6 year anniversary of the onset of MAV (it came on suddenly). I will never forget that day because it was so horrific as were the years that followed until my symptoms were under control.
I had tried Topamax a couple of times and gave up on the titration because it made me feel so much worse. I could not even make it past 25 mg. The dizziness on it was completely out of control (I even cut the 25 mg tablets up with a pill cutter and was dizzy on 12.5 mg). However, my life with MAV was just so miserable. I could not go out to a movie, to a concert, to malls, or anywhere where there was a crowd. I was imprisoned by it. I knew Topamax was my only option because my MAV was so severe.
My titration seemed to take forever. I felt horrible until I got to 100 mg and then things got to be significantly better with no dizziness. I started feeling a lot better when I was increasing up towards 200 mg. That is when I noticed significant changes in my balance and I was feeling more like my former self. These changes were very gradual.
I am now taking 220 mg of Topamax daily. I have my MAV largely under control. My only triggers are large amounts of caffeine and low blood sugar from skipping meals. My persistent side effects from the medication are word finding problems, I have memory impairment (I am hopeless at remembering new material or a name now), some difficulty writing, and I cannot sweat (which can be a problem in heat/exercise). However, I would rather deal with these issues than MAV because mine was very severe.
I know the titration is difficult, especially when one already feels so ill. However, it does get better. Fortunately my doctor gave me a prescription for 0.25 mg Clonazepam to help with the dizziness. I know many people have trouble getting this drug prescribed because it is a benzodiazepine. I used it sparingly during the titration period and I found it to be very helpful.
If you have any more questions please let me know - Lisa
Lisa,
Many thanks for your reply.
Your reply really struck a nerve with me. I am so sorry you got stuck with MAV. You seem to be handling it like a champ! Good luck on continued success.
I canāt believe this MAV!!! Could anything be worse? People donāt get it.
Do you take your Topomax all at once or break it up during the day? Did you try any other drug? Have you tried Claratin or Gravol along with
Topomax? Did you have medical advice or did you increase/decrease your meds as you saw fit? Do you live in Canada? I ask because it seems that the Americans have way better access to specialists than we do.
Hi Marg,
No nothing is worse than MAV. I felt like I was trapped in a horror movie. At my worst I could not tolerate patterns of any kind, I could not even tolerate walking on ground if a tree was casting a shadow on a sidewalk. I would freeze and nearly fall over. I could not walk on shiny floors, or in areas where people were coming at me from different directions. I was unable to stand up and talk to people at the same time because the swaying became too bad. Grocery stores were a nightmare and eventually I could not go at all. I was unable to tolerate the visual complexity and I could not stand in line. My family, friends or doctors never understood my lived experience. I was a mess.
I live in Calgary, Alberta, Canada. You are so right about poor access to specialists in Canada. When I first got dizzy I went to a GP in a walk in clinic and he finally referred me to an ENT. That appointment took a 6 month wait. The ENT said that I probably had Meniereās Disease because I had ringing in the ears and when I was tested I had hearing loss in one ear. He was unsure so he referred me to a neurotologist in the same clinic that specialized in dizzy disorders. When I was at the counter with the receptionist making the appointment to see this specialist, I found that the waiting list was 2 years long! I nearly started crying because I was so ill at this point. The receptionist took pity and grabbed my chart and shoved it at the neurotologist who was standing at the photocopier and asked her to fit me in that day. She ultimately diagnosed me with MAV. I could not see the neurologist without an MRI, which was another one year wait in the health care system, so I had to pay over $1,000 at a private diagnostic clinic to speed up the process.
I take the Topamax in a divided dose. I have tried: Amitriptyline, Nortriptyline, Cymbalta, and Celexa. I hated all of these drugs. I am very medication sensitive.
I also tried the anticonvulsant medication Epival. I liked this drug and I was titrating upwards towards the target dose. I found it to be working on removing the symptoms but the weight gain was not acceptable. I gained over 50 pounds in 6 months and increased 8 clothing sizes. After the Epival I went on the Topamax.
Gravol did not work. Antihistamines did not work. The only drug that helps is a benzodiazepine such as clonazepam. With Topamax you have to be very careful because many medications interact with it. I always check on drugs.com. I titrated with the help of my neurologist - Lisa
Hi Zoology,
Itās nice to see you on the board again!! Thank you again for your advice about Topamax when I was trying it earlier this year. I was having a lot of side effects ocularly with it and that led me to think that there was a sulfa allergy behind my problems with the drug. I have a sulfa allergy. Anyway, I am doing quite well in controlling my migraines and MAV now by taking GAIA St Johns Wort in combination with at least 800mg of magnesium (either doctors best brand or KAL magnesium glycinate) as well as feverfew (this is a new addition but seems to help) daily. I take the first dose of magnesium in the morning upon waking and these second dose around 5pm. I take the SJW one pill three times a day. I avoid MSG in terms of "natural flavoringsā in processed foods and having too much caffeine, but 1 cup daily seems ok. Gluten seems to make symptoms worse for me. I am living life again and able to work on my computer and go out with people. I met someone who I am in a relationship with now and things seem to be going pretty well. I take things a day at a time but the one thing I am grateful for this illness having made me live my life with fewer fears (since MAV was the biggest one) - I just live life in the moment now more and am grateful for feeling better. I am worried if I want to have a kid whether I need to get off SJW and feverfew, but I suppose I could survive 9 months since I survived two years without any supplements or meds to help the MAV. I am so glad to hear that you are still doing well on topamax and yourāe lucky you can take it since itās less trouble than taking all the supplements! Gabapentin helped me at a low dose (100mg 3x daily) as well as nortripyline at 10mg after about a week of being on that. Iām not on those meds anymore though because of bloating effect. Claritin also bloated me which was weird. Have a great summer,
Liv xx
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P.S. CoQ10 has also been very helpful but Iām trying to see if I can function w/out it because of GI issues with it! It definitely makes my digestion speed upā¦in not a totally great way!
Hi Liv,
Great to hear from you. I am so glad that you are showing improvement. The success that you have shown is an excellent example of how unique each of us are in our treatment plan. There are so many options for people to try so to others out there with MAV do not give up! It is a great feeling going out again isnāt it? I wish you continued success.
Lisa,
Canāt tell how much I appreciate your share. Your symptoms read almost exactly like my symptoms. Note: nearly falling over during a ravine walk because of the pretty leave shadows. This forum had mentioned symptoms that I didnāt even realize were symptoms I have had this so long. Like you, I saw many doctors but even the ent and neuro I saw here in Edmnton, Alberta couldnāt help so they blew me off. Finally, I flew to Palm Springs,California where I paid to see an ent/neuro. She gave me a VNG test. With this VNG in hand I got yet , another, referral for another neurologist here in Edmonton. This is a young doctor and I think the current education teaches them about this condition. It seems the older doctors I saw didnāt have a clue. She spoke to me for about two minutes and she diagnosed me. WHAT! After all these years. She gave me Topomax. I tell you all this because I know read everything everyone else writes and it all helps. Mostly, I am so sick of this that I donāt like to talk about it but with people who have it, well, it is a relief!
I am going to try adding a little Topomax in the a.m. Does it have to be 50/50? I am up to 20 mg at night only so far.
Thanks so much again
Marg
Hi Marg,
Sorry for the delay. When I started out I tried to keep my doses evenly split. Now I take the bulk of my dose early in the morning (about 4:00 - 5:00 am when I get up) with a smaller dose to hold me over into the the night.
As for travel I have only been in a car since all this has happened. When my MAV was at its worst longer car rides were just awful and I would feel like I have been floating when I got out of the vehicle. After being on Topamax I have no trouble at all. Due to personal circumstances I have not traveled by plane or train (with the exception of our local city train which is fine) since this all happened.
