Met with Neurologist today :o)

Greetings all,

I met with my Neurologist today to let him know how I have been fairing with my medications.

  1. Celexa at 60 mg…nada
  2. Imapramine…nada

Because my sleep patterns are so horrible and rarely do I get a good nights sleep, he is convinced that my sleep deprivation is complicating any migraine medication for treatment.

Thus, he has prescribed Klonopin for me to take at night. He wants me to start at 1 mg…and take up to 4 mg if necessary. (for those that are familiar with Klonopin, is this high, low, or normal?)

Also, he is starting me on Topamax at 25 mg for 1 week. Then Topamax at 50 mg the second week. Then…we decide how we are going to titrate the medication from there.

He is keeping me on the Celexa at 60 mg still.

So…that is the story for now. I am back at work following my foot surgery and, hopefully, heading into a productive treatment regimen for my chronic ugh feelings :smiley:

I will keep all of you posted…my extended dizzy family :slight_smile:
Todd

Todd,
That is a fairly robust amount of Klonopin. Considering benzo’s possible tolerance/dependence issues, I think I might try .5 to start and see if it helps. Have you ever tried it before? What about Valium?
I sure hope this helps you out…I’ll be keen to hear how it goes…
Thanks for sharing…
Kelley

I have never tried it before.

I was always under the impression that valium, xanax, and klonopin were identical medications.

I have taken xanax at .5mg @ 2 or 3 times per day. I strictly use this as a way of calming by brain down in hyper situations. It seems to work ok…not perfect, but just ok.

However, my Neurologist that I saw today suggested that he wants me take the Klonopin at nighttime as a sleep aid. Hmmm…that is different than my preconceived notions about that medication. I always thought that my fellow dizzy friends took Klonopin as a short term vestibular supprestant, similar to my xanax???

I will start at the .5 at night and see if it does anything to my sleep patterns. Will keep you posted.

Thanks for rooting me on!

Todd

Todd,
Benzos are similar, but there are some differences. I think there was a recent post on their comparisons. Klonopin is great for me…I take 1/4 of a .5mg tablet in the mornings and it helps me at that low amount. It stays in the body a long time…a 25 hour or so half life…xanax you have to take more often, so there’s more of a roller coaster effect…Klonopin is smoother…
If you’re having trouble sleeping, I’m surprised your dr. didn’t recommend Amitriptyline instead of Imipramine? It is more sedative…
A personal favorite of mine for sleeping (and it helped a lot with anxiety and dizziness) was Remeron…My sister just started it for anxiety/depression and she’s in love…says she feels like she’s on a beach in Hawaii with a cocktail in her hand…just chills you out, but no real side effects for me…just FYI…
We’re cheering for you and Topamax…
Rah! Rah!! Rah!!! :slight_smile:
Kelley

Hi Todd,

Here’s my two cents:

Of all the benzos the one that has a hypnotic (sleep inducing rather than just drowsiness) effect is Temazepam (known in the US as Resterol). That’s the one I take specifically when I really, really can’t sleep. That is, old fashioned insomnia, rather than anxiety. The sleep it produces, however, does not exactly mimic the natural stages of sleep, so while you will sleep, it won’t necessarily be a ‘good’ sleep.

Klonopin is the benzo with the longest half life, so, if you’re looking for the longest lasting bang for your buck that’s what you want.

Valium seems to be the benzo that is the stand out winner for all round effectiveness for MAV - it calms the anxiety, it calms the vertigo and the relaxing effects can help with sleep, especially if it’s anxiety which is preventing you from sleep.

Vic

For me, clonazepam (Klonopin) 0.5mg tend to have the following effects:

  1. If I take it during the daytime for the dizzies, and have things to do (e.g. work) and my mind is occupied, it is very effective at calming my brain and paradoxically, although I feel I COULD sleep if I wanted to, makes me feel more alert, focussed and able to multi-task. It can get me thru the day, calm the dizzies, and calm any anxiety I may feel. If I haven’t takenn it for a while, 0.25mg usually does the trick

  2. If I take it in the evening when I haven’t got anything to do but I feel rough, again the clon calms the dizzies, but it DOES help me fall asleep. Actually, I’m not someone who normally has dificulty sleeping, and the clon completely zonks me out. The downside is I feel a bit hungover in the morning.

I have been taking it on and off for over 10 years, and the thought of taking 4mg would be extremely daunting! Seems like a high dose…

I think all the benzos have a sedating effect, but I read recently that as well as that benzos decrease the amont of REM and non-REM sleep. Non-REM sleep is actually the more refreshing type of sleep, so you tend not to feel as refreshed in the morning after a benzo. The newer drugs like gabapentin and pregabalin (anticonvulsant class but used in the suppression of neuropathic pain as in fibromyalgia, and in Europe have been licensed for anxiety disorders) suppress REM sleep but NOT non-REM, therefore are better for modifying sleep architecture.

Dizzy Izzy

Hi Todd,

I know you mentioned that Dr. Baloh said the benzos can block your recovery/compensation and I was wondering if this current neurologist feels differently about that theory? Have you been off the Xanax for awhile and did you notice that you got worse or better since being off of it?

Best of luck to you and thanks for keeping up posted!

Warmly,
Lisa

Hi Lisa,

My current Neurologist does not feel the same way.

Either way, I have an issue.

I have been on Xanax at .5mg @ 2 -3 times a day for about 3 years.

I cannot just quit now. I have tried…it was not pretty. I have tried cutting them in half…again, extremely difficult.

Now…the question is, what came first, the chicken or the egg.

If I felt awesome and had no fogginess, hyper brain activity, I would have no need/desire to use Xanax. Alas, that is not the case.

So I take it to feel a little better and now I have gotten hooked on them :oops:

Today, I took 1/2 of the Klonopin tablet and only needed 1/2 of a Xanax all day…that deserves an AMEN from the congregation !!! No jitters, no withdrawals feelings, no problems…yeah. We shall see if the Klonopin helps me kick the Xanax habit, and if ultimately, the Topamax kicks the MAV in the Ass!!!

Hey Todd,

Thanks for the explanation. I have not heard of the benzo theory with MAV and blocking compensation, so I was rather surprised that Baloh suggested this. From my understanding, unstable, dynamic processes like migraine, unlike VN can’t really compensate in the same way.

I am not surprised you didn’t need the Xanax as they both work on the same receptors. Often when people become addicted to shorter acting benzos like Xanax, it is easier for them to taper off them by first switching to a longer acting benzo like klonopin or valium.

Either way, yes, let’s hope that Topamax does the trick!!!

Best,
Lisa

That seems like a high amount of Klonopin…I take .5 two times a day sometimes just at night with no issues

Hi Todd,

I too first thought that was a bit high mg for the Klonopin, but since you were already on the xanax and I believe are trying to get off of it or at least exchanging use of klonopin for it, that makes more sense (at least at 1 mg). I am, however, a little concerned with your titration amount for the Topamax. Just fyi - many people have found that they usually have to go slower than that (not 25 one week then 50 the next which seems rather fast.). I did 15 mg one week, then 15 the next and so on. And also keep in mind that the first two weeks it is not uncommon to feel poorly on it as your body tries to adjust. Just something to keep in mind.

Best, Bonnie

I’m with Bonnie on the Topamax. My neurologist suggested the same schedule, 25 one week, 50 the next. But a psychiatrist friend of mine suggested I might do better going slower: stay at 25 for 2 weeks before increasing to 50, and waiting another 2 weeks at 50 before going up again, etc. So that’s what I did.

I’ve had good results with the Topamax - I had to be at 100 mg for 3 months for the daily issues to be finally gone - but it’s a powerful drug, so I think it’s better to go slow so you don’t get thrown by some side effects that might put you off of it entirely before you’ve given it a chance to do its magic.

Hi Todd,

just wanted to say I’m with Bonnie and Mayalice on the Topamax comments! I spent 2 weeks at 25 mg and then initally failed to make the jump to 50 mg due to side-effects. Also, the first few weeks were pretty rough. I eventually got to 50 mg (and have stayed there) by titrating much more slowly: 25 > 30 > 40 > 50!!

I know everyone’s different, so don’t want to put you off your inital plans - just worth noting, I guess, and don’t be too disheartened initially if it’s a bit rough! All the best - keep us posted…

P.S. Maryalice - yours was one of the Topamax success stories that has kept me on this drug when the going got tough (along with Rich2008 and others) - so a big thank you for your posts! Without people like you posting about their success I would probably have given up on the drug by now, so thanks again! :slight_smile:

Tony.

Would you Topamax users mind sharing what side effects you had when you first started taking it and as you moved up to your current dosage?

thanks!
Anne

Hi Anne,
I went up to a dose of 150 mg. I think I even tried 175 mg for a few days. In the beginning I just felt some tingling in my hands and feet, but very tolerable and not too bothersome. I thought topamax was EXTREMELY easy to tolerate. Unfortuntately it did not help me. I probably went up much slower than I needed to.
Best of luck!
Lisa

— Begin quote from "Anne"

Would you Topamax users mind sharing what side effects you had when you first started taking it and as you moved up to your current dosage?
thanks!
Anne

— End quote

Hi Anne,

I’m a little wary, because I wouldn’t want to put anyone off, so let me just say that I believe all these symptoms are manageable by using a ‘low and slow’ tritration - any real problems I had were later resolved when I dropped back down to a lower dosage and did a slower titration. Here’s my list:

  • Nausea (bad for 2 - 3 weeks after starting at 25mg per day, then pretty much disappeared - I believe it would have been better if I’d started at a lower dose than 25mg)
  • Mild - moderate headaches (disappeared after 2 weeks or so)
  • Anxiety (a little overwhelming when I stepped up from 25 > 50mg, but disappeared when I returned to 25 - no problems when I tritrated slower (25 > 30 > 40 > 50))
  • Feeling of ear fullness/pressure (this would come and go, but now I’m settled at 50mg it seems to have pretty much gone)
  • Tingling in feet (only occassionally, and usually not for very long)
  • Possibly feeling a little colder generally (body temperature-wise), but this was not too troublesome and has settled down

I really hope this doesn’t put anyone off trying Topamax - I believe that the worse symptoms (nausea and anxiety) could have been avoided simply by starting at a lower dosage, and then tritrating more slowly upwards. Now I’m settled at 50mg, all the side-effects have pretty much settled down! Take care,

Tony.

Tony - Thanks for your kind words! So nice of you to mention that.

Anne - Side effects can be good too: I lost weight, which I needed to lose, so it’s not all bad! :smiley:

Some of the weight loss (most?) may be due to my finding that fizzy drinks began to taste icky, and I used to drink a lot of Pepsi. I haven’t tried it in a long time and don’t intend to because I liked it too much - if that side effect wore off, I don’t want to know about it!! It’s not good for you anyway, and I’m drinking more water now - much better for me.

I had tingling in my fingers and lips in the early months, and still do occasionally. But it’s mostly gone.

I noticed visual trails in the morning when I first woke up and before I turned the light on (but when there was enough daylight in the bathroom for me to see). Not noticing that much anymore.

I did have some occasional word-finding trouble and I’d say I still do. It was worse when I was at 200 mg, and I’ve come down from that dose (I now alternate between 150 and 100 at bedtime). I rarely do public speaking so this is no big deal to me because it mostly happens with words that I seldom use.

Constipation was a big problem for me too, but I tended to have problems with that before - Topamax just made it worse. I took stuff for that before and now I just take more of it.

The main reason I came down from 200 mg was no orgasms once I increased to that dose (THAT’S a good reason to reduce a dose!!), but I also felt mentally dull (“dopamax”). I don’t feel as dull at the current dose, but I’m probably not as sharp as I was before I started taking Topamax. A lot of it may be that I’ve just slowed down with age, too - and menopause was hell for me since that’s what started the dizzies for me. Topamax is what STOPPED the dizzies for me, and it is WELL WORTH IT.