Just started Topamax last night

Sparrow, I thought you'd be interested I had read something that said if you have ANY vestibular issues that you could be chemical sensitive.
I literally take pediatric doses of stuff and it hits me like woah!
Even antibiotics like amoxicillan. I was always fine until about 5 years ago.
The heart medicine I take I had to scale back the dose.
Baby doses of everything.
I had gone into the urgent care for a bee sting (I'm allergic) and they gave me a full adult dose of Benadryl. I literally passed out cold, they had to break an ammonia tab thing under my nose to get me to stir.
The doctor assured me I am starting on a tiny dose of the gabapentin/neurontin but I think it's going to hit me full force because everything I take does!
I don't know if you have ever taken Meclizine, but even at 6 mgs. I can feel it.
My doctor said that sometimes certain people are just very sensitive to chemicals. Lucky us, right? ;P

 

I have that info I mentioned last saved but don't have the URL so I am copying and pasting the section about vestibular damage. Although my doctor said I don't have any damage, I have every single one of these issues which I find interesting. I think the site may be www.menieresresources.com but I'm not sure. The brochure name is "Brain Fog"

If your vestibular system is damaged, it could manifest itself in some of the following ways:

· Light - blinking lights, fluorescent lights, and strobe lights might bother you. A 100-watt bulb can seem like 1000 watts.
· Bright colors might bother you.
· Sound - foreground and background noises might blend, or there might be a delay in hearing what people are saying. There may be sensitivity to sound.
· Smells – there may be sensitivity to smells.
· Depth perception – there may be difficulty telling how far away another car is, trouble catching a ball, and fear of heights.
· Motion sensitivity - can cause carsickness, airsickness, and seasickness. There may be trouble in moving elevators, on escalators, or an inability to ride amusement park rides. The same cells and circuits of the inner ear do not control counter clockwise and clockwise motions. Depending upon the extent of the damage incurred, one might be carsick but not seasick.
· Chemical sensitivities - one may overreact or under react to standard drug dosages or alcohol. An average dosage either does nothing or is too strong. Alcohol might cause drunkenness immediately or quite a while later. Adrenaline is felt like an overdose. This applies to all emotions: guilt, guiltless, sensitivity, insensitivity, fear, or fearlessness.
· Gravity – one may have an out-of-body sensation, feelings of floating, or have trouble when there are no visual clues as to up and down, such as in tunnels and elevators.
· Eye tracking - blurring speed is increased. Forty mph might seem like eighty. It becomes difficult to keep the place on a page. Lines and spaces blend. Reading is like following lines of text in a moving car on a bumpy road. Adults who have already learned to read before vestibular damage occurred might simply find they have stopped reading for enjoyment. The opposite can happen - blurring speed can also be slowed.
· Memory – there may be difficulty in retrieving words or information needed. New information does not stick.
· Direction - sense of direction may be off. One may get lost easily, have difficulty locating familiar places, get turned around in buildings, or have no sense of north, south, east, and west.
· Weather - barometric pressure changes can be felt intensely causing restlessness and nervousness before a storm.
· Rhythm - sense of rhythm may be off causing stammering, stuttering, and hesitations in speech. Internal rhythms may be off. One might notice harmless skipped heartbeats, erratic menstrual cycles, and erratic sleep patterns
· Time - sense of time may be off so that one is always late or early or does not realize how much time has passed. It is difficult to recall if an incident happened a week or a month ago.
· Sleep – there may be difficulty falling asleep, difficulty with sleep walking,
nightmares, or having no dreams at all.
· Humidity - greenhouses, laundromats, indoor swimming pools, or dry heat may be troublesome.
· Electromagnetic fields – may be felt while others feel nothing.

 

Hi Shelly Thanks for sharing this information with me. That's interesting that patients with vestibular disorders are very sensitive to meds. It makes me think that the whole body becomes hyper sensitive to everything. I am also thinking about an article I read about Chronic Lyme that oftentimes one develops central nervous systems disorders with Lyme which impacts on any medication that has a sedating side effect. I feel like an oddity when doctors look at me like I have three heads after explaining that I have to start out at peds levels on medications. That's usually when I see them glaze over and loose interest in me. We should go on our doctors visits together, lol

Good luck with the Neurontin. My first week on Neurontin I started at 100 mg three times a day and that was waaaaay too much. I felt as if I had just had a double very dry martini after each dosage, lol.

I insist on liquid forms of meds and use a syringe and titer it up slowly, when I can find a doctor that is willing to wait it out with me. I don't think that Neurontin comes in liquid form.

Sparrow

 

Shelly ~ Wow, just read your last post. Wow, I can see me in everything you copied in here. I will look up the website you shared. You know, I can only take the pediatric Benadryl (the grape flavored chewables, lol ), I tolerate them very well, but I can't take adult strenght Benadryl either. Also, when I used to get novacaine for dental work, I would fade out for a few moments which scared me and the dentist. So, now I ask for slow acting novacaine or anything slow acting period. It's that adrenalin surge that gets me very time. Sorry you fainted (((hugs)))

Sparrow

 

Wowww, I read the post shelly about when your vestibular is damaged what could occur and I have many many many of those symptoms after i had my vns done.. that is something..and that is why I am still having such a hard time trying to figure out if what i have going on right now is just the way it is going to be for me because i had the vns done.. which i doubt.. or if it's bppv or mav or both or who knows! grrrrrrrrrrr..... but I will figure it out..... someday.

Sparrow.. yes I started the topamax a few days ago.. roughly 25mgs a day is all I am taking for now, I cut a pill in half 2 days in a row cuz i was scared of side effects but i really haven't had any but hand tingling so i am going to stay with that dose. the headaches have been ok so far.... but i do still have the daily off balance/drunk feeling and the positional vertigo when I lay down or bend forward.. pretty frustrating. but maybe if i up the dose of topamax eventually it will help.. idon't know.. i just worry the brain fog will get worse than it already is if I take too much of the topamax.
Thanks
Gina

 

I am starting on 100 mgs. once a day for a week and then up to 100 mgs. 3 times a day by week 3. I think he eventually wants me up to 900 to 1200 a day. Yeah right! lol. I read that this med has a short half life and should be taken at least 2 or more times a day so I don't know why I'd take it once a day for now. Who knows. Probably for me to get used to it but not be sick all day long maybe.

I have never met anyone with the same med sensitivities as me! Everyone looks at me like I'm a hypochondriac I think....
How long did you find that you felt so out of it after taking the Neurontin? Like did it start to wear off before the next dose or not at all because you had to take it 3 times a day?

Sedative meds are a huge problem of mine. I can't take even 1/2 of the smallest dose of Vicodin or Percocet. Ugh. I've had Ativan a couple of times at the ER through IV. I'm not even going to tell you some of the stuff I was told I did! Yikes!

I never thought of asking for liquid, thats a good idea. That way if you can't handle the whole dose you can kind of go down a little. Something to keep in the back of my mind anyway.

 

Shelly ~ I would say it took two weeks to adjust to that level of medication. Eventually I was able to tolerate it, surprisingly : :

Gina ~ Good luck with the Topomax. Titer it up slowly and watch for rashes.

Sparrow

 

I have never ever heard of lexapro for migraine. I am on it for mood and anxiety issues. I am also on Neurotin for nerve pain issues. I still need better control of migraines. I am on a MAV diagnosis track right now and following these topomax thread with interest.
I wish we all had the same make up...you could be my lab rats!

Best of luck to us all!

 

Alfie ~ There is a theory that with loss of estrogen, there is loss of serotonin and less serotonin may be connected to increase in migraine. I was put on Lexapro to produce more serotonin to help with my migraines. SSRI's are also being used as a second line of defense in treatment of chronic lyme. My doc is trying to incorporate both and we shall see what happens.

I have been on Pamelor which, was a second generation of meds for migraine control. For 30 years it controlled my migraines but now it is not working. So we are trying the only one of the SSRI's that may help me control migraine.

Sparrow

 

Re: New to Forum..also have been on Benedryl nothing has worked..

:'(Hello, I'm new and really need a support forum for Meineres, I have been on all 3 medications including Topamax, lasix, and also a dieretic, nothing has worked. I have been on Clonazapam for over 7yrs, but I didn't have Meineres then..however when I had the first symptoms didn't get results, had a regular test by my previous phyisican, then asked why my ear was hurting, the fluid pressure, etc. Finally have a new Dr. as I was recently married, and went on my husbands health ins. My dr. sent me to an Ear, Nose & Throat specialist, did all the tests..bingo, diagnosed with Meineres. Went to a specialist who prescribed the above meds except for the Clonazapam I have been on for years..next step I go to therapy March 11, 2008 for a consultation and a vestibular treatment will be done..I hope it works as I have suffered with this for so long..the dizziness, vomiting, hard to focus when I worked...was laid off, didn't find a job..had a back problem, went to my Dr. who had an MRI done, and had to have a Back Fusion in Nov. of 2007..that will take 18mos to heal, 3mos and still hoping when I see my back surgeon next week to have P/T for my back. I would like to know if anyone has had the Vestibular therapy, and did it work? Surgeries, that anyone got relief? I have 20% loss in my rt ear, and it is also in my left. The fluid fullness is constant, it never goes away until I am asleep, I would like to live a normal life without this, concentration is very difficult, as I am sure you already know. Stress, I understand is a factor...caffine I have cut down on..before my back surgery was put on Chantrix but that was awful!! it worked but the side effects weren't worth it believe me..I just am so glad this is here to get answers through this forum..and support..I can't stand this..good luck to everyone. Looking for advice. Thank you very much.[/color]

 

Gina, Just wondering how you are doing on the new meds? I hope you are getting some relief. Reading all the other posts made me aware of the hidden msg in foods. This is really something I am going to look into as I know diet realy affects me. It seems that no matter what I eat these days my ear fills up and I am dizzy and off/feeling for the rest of the day. Hope you are feeling better. Donna

 

Gina - how are you doing with the meds??? Hope things are getting better for you!!

Teresa

 

Gina ~ I am sorry, I meant to inquire as to how you are doing today. Are you on day two of the Topomax? Less tingling, I hope (((hugs))). I do know trying out new meds can be a challenge with adjusting to side effects. Hoping the tingling goes away Also, are you keeping a daily journal of the meds you are taking and how you feel from day to day. I do this and it helps the prescribing doctor to see it in black and white, beats trying to recall all the information. Also, do you have a medic alert to wear? Not sure if I asked you this or not. I carry updated medical information in my purse, in my wallet by my drivers license (first place a medic will look for), on my frig. I also hand it over to all my prescribing docs. When I broke my toe, I handed my med list over to the ortho as he was writing some pain meds for me and after he reviewed all the current meds I was on, he refused to prescribe any prescription strength pain meds.

Sparrow

 

HI all, I am on day 4 of topamax and nothing real bad.. just some tingling in my hands and feet.. today is a very off balance day though but i think it is more so from my vestibular rehab therapy i had last night then anything but i really do feel off today, i do get days like this so i can't say it is from the topamax... if it gets worse than I suppose it is possible... very rocky feeling and blurry vision but i do get like this. sucks. but i am continuing to take the 25mgs of topamax and see how i do, i am hoping if some of the side effects do kick in that if i can just get thru them that maybe they will go away and will start to help me. i hate this brain fog/dizzy off balance feeling.. it is just awful. have to lay down. but thanks for thinking of me. will write more later.
Gina

 

Winetuscany, I'm sorry you are having a hard time. A better thing to do would be to post what you posted above as a new topic, more people will see it and respond to you.
Check out the database. There is a LOT of information including things that have helped people.
Take care.

 

Gina, I'm glad you are still able to take the Topamax without any major side effects. Both my doctor and pharmacist said that even if you do get side effects as you up the dose, they will usually go away so keep that in mind too.
After doing the migraine diet I have been feeling a LOT better the past few days. I still haven't started my meds yet but I'm enjoying feeling ok, not great but definitely not horrible too much!
This does happen to me from time to time it's just so infrequent so I don't know if it's the diet or just a coincidence. I don't really care. I even have a cold/virus and I don't even care that I'm tired and sick and achy because the dizziness is tolerable.
Keep us posted.

 

I hope I can stay on it, today hasn't been such a good day but I do go thru days like today. very dizzy feeling and off balance/drunk feeling... it's awful but i can't really blame the topamax cuz i have had this before i started the topamax, i just hope it's not making it worse.. I will keep on it for a few more days and see how I do. thanks, I hope you continue to feel better too shelly.
will keep you all posted.
Gina

 

Day 7 of taking topamax... not too bad with the side effects, I have noticed tha when I eat I am not as hungry.. or I don't need to eat as much to feel full.. maybe that's why they say you may lose weight on it...?? I don't know. the headaches are still there but not every day.. i have had two headaches since starting topamax but i am on a very low dose and I was told that it could take a few weeks before the drug may even help so i know to not get discouraged... so i am hanging in there. will keep you all posted.
thanks
Gina

 

GinaMc:
Have been following your updates on taking Topamx and I hope it really works for you.
I know the terrible feeling of having a migraine because I have had them for the last 4 years and I have had one for the last two days.
I know for me certain foods are triggers for me.
Something so simple as perservatives that are in most packaged foods are a big trigger for me. You know all those foods that come in boxes at the supermarket (ie stove top stuffing, hash brown potatoes, even salad dressings) they all have a perservative added to keep it fresher longer on the shelves.
One for me is tomatoes, raw tomatoes like you would put one a sandwich would cause a migraine but not tomatoes that would be cooked in a sauce and say on a pizza would be OK.
One other big trigger for me is any foods that contain sulfur. It could be bisulfite it goes by alot of names. Pasta contains sulfur which is added to keep it fresh. There are some pasta brands that don't have sulfur.
The best things you can do finding your food triggers is trail and error.
Keep a food journal for awhile and see what might cause migraines. For me besides getting the migraine I get that terrible sick feeling ( like I am constantly sea sick).
Some other triggers for me, breads, citrus fruits, Orange juice, peanuts.
Google foods that might cause migraines and you will get list of possible triggers.
So far my doctor hasn't put me on Topamax but we have discussed it.
I am on Ayclovir three times a day treating my menieres (just started in November after seeing a new doctor) just could not take another round of presidone.
Any question feel free to PM me.
I even bought a book and I kid you not,
Migraines for Dummies.

 

Thank you for the information, I have been trying to keep a food journal but it is so hard... first thing was to kick the caffeine... now that caused a headache... so i had to wean off of that... secondly I am now watching MSG.. and other foods like chocolate, etc... I do notice that fast food which I don't eat often will trigger one for me.. but I had a hamburger for the first time in I don't know how long from burger king and bammm bad migraine and off balance feeling terrible so i know that was a trigger.. so i will try to watch my diet. thank you so much for the info.

going good so far on the topamax... staying on the low dose... only have had a couple of headaches so far and i'm one week into it.
take care
Gina