Brainfog/Cognitive difficulties - anyone?

Its so hard to know whats going on really with the multiple and varied symptoms that people with these problems have. In terms of the Lyrica, I have found it very easy to tolerate. I also tried Topamax and couldn’t tolerate it because of what it did to my thinking. The anticonvulsants seem to be the things that alot of people find effective for these problems, and if you can find one that doesn’t affect your mental clarity too much…

Agree with that… I’m seeing more and more people finding the anticonvulsants effective.

The more recent anticonvulsants like Topamax, Lyrica, Keppra and even the old one Sodium Valproate seem effective and very safe.

Adam,
Personally, I believe the trend toward anti-convulsants has been driven by ortho-mcneil, and their ceaseless push for topamax. Medicine has trends, and the anti-convulsants are a current trend for migraine, pain, biploar disorder.
There was a review of migraine prophylaxis agents, and it discussed how most were found by serendipity, and that the unifying mechanism is unknown. (published on headachedrugs.com a great site by a neurologist from Chicago, Larry Robbins.)
In the US: the FDA has a very low standard to approve a drug for migraine prophylaxis: 50% effective. The topamax add shows that people with an average of 6 migraines a month have 4 on topamax, vs. 5 on placebo, and trumpets a 50% reduction–but it’s really one less a month.
So, I personally believe that for some people anti-convulsants work beautifully and help considerably, but to quote my neurologist who was considering a medication change–“lets try something that doesn’t promote fuzzy thinking.”
I’ve witnessed severe side effects from depakote with my daughter–and since it is unsafe in pregancy and causes ataxia, it wasn’t really the best choice for a 16 year old with MAV. She ultimately developed a severe rash, but was ataxic on it. I’ve had co-workers get significant cognitive dysfunction on topamax.
We have to weigh the risks and the benefits with all drugs, but at least in the US, the push for topamax was drug company driven, no compelling study to show that it’s a superior drug to beta-blockers, calcium channel blockers, ACE inhibitors, even magnesium and/or riboflavin, for migraine prophylaxis.
Sorry to rant, and I don’t want to dissuade anyone from trying a medication that they and their doctor decide upon, but I’ve seen some problems with the anti-convulsants.
Kira

Ever since I came down with this, I am definitely a bit slower at processing information. When my first doc put me on valium for hydrops, the dosage was fairly high, and that exacerbated the problem. I cut my valium dosage way down, and even though I don’t believe I am as sharp cognitively as I was a few years ago, it’s better than it was with the high valium dosage.

Kira,

Interesting post. I’m new to this MAV thing (my symptoms are years old, it has just taken me forever to get a diagnosis), but I have also noticed and wondered about the popularity of Topamax, given it’s ugly SE’s. I was diagnosed by somebody who trained at Johns Hopkins with Buccholz, (he works at a pretty good place in NJ now) so I was surprised when his first choice for me was Zoloft (his “personal favorite”) and was even more surprised when his next choice would be Topamax.

I didn’t argue with the Zoloft since I figured I needed an antidepressant anyway, but I was concerned about whether it was responsible prescribing not to consider BB’s or CCB’s as first choice.

I talked with him today on the phone because, although the Zoloft has improved my dizziness, i am having other issues with it - i’m ex tremely med sensitive. Again, he wanted to go straight for the Topamax. I asked him why, especially given my high sensitivity to medications, as it’s a given that i’m going to have SE’s, he wouldn’t think of BB’s or CCB’s first. He said “they have run out of favor. anticonvulsants are more popular these days.” He claims that in his experience, for the past ten years, he has had little success with BB’s and CCB’s. I told him i wanted to try anyway. I hate this - I have a diagnosis and the fact that Zoloft helped confirms it, I think, and now I have to haggle over treatment.

BTW, Chicago is my home town :slight_smile:

Julie

Hello,

Apologies, Rob. I realised that having asked you how this all started, you have written all about it in the member’s histories post.

I have run in to problems with propranonol at a higher dose due to a pre existing reflux problem which it seems to be exacerbating. Unfortunately my next neuro appt isn’t till December, but I will almost certainly bring up lyrica as a possiblity. It’s heartening to know that topamax caused you problems but lyrica didn’t. Who knows maybe I will have the same luck.

I am increasingly miserable about my impaired cognitive function. I am definitely better than I was at a higher dose of prop, although I have had to take it down again slightly and my symptoms have got somewhat worse again. I guess I just realise that even when I am at my best with this and have got most of my cognitive ability back, there is still something amiss. Like it always has an impact on my thinking even if only at a minor level. I guess I am wondering if I will ever be as I was before, or if my thinking, even with a succesful drug regime, will always be somewhat impaired.

best,

hi kira

I fully agree that modern anticonvulsants are being pushed pretty heavily (and damn they are expensive) and are probably prescribed for some things for which they are not effective.

I do believe the body of evidence behind Topamax is consistent though, and that a number of trials have shown it at least as effective as the “old and trusted” drugs like Propranolol. A quick scouring of pubmed showed many successful trials and a favourable comparison with other drugs.

My personal experience (and this varies so much from person to person) is that I have had by far the least side effects on anticonvulsants (usually none) and have had less favourable experience with some of the older drugs like propranolol and tricyclics. I found propranolol to be pretty horrendous in terms of fatigue and my blood pressure was often as low as 90/50.

There is a balance that is hard to find. I have had one doctor who refuses to prescribe anything but propranolol, and I know others out there jump straight to the anticonvulsants where perhaps they are not the first line choices (at this stage anyway).

In regards to mild ataxia and cognitive dysfunction… I at least find comfort in the fact they are easily reversible if they become a problem. You sort of end up in a position where you decide if you’re in a better place than you were before the drugs. If you are you keep going, if you’re not you stop and try something else.

Drugs like lyrica, keppra etc. do not really have a lot of evidence behind them yet, but if I didn’t try them because of this I wouldn’t be in the (much better) position I am now.

Adam

Adam and Julie,
Thanks for the thoughtful replies:
Julie, there is a neurologist in Pittsburgh, Furman, an expert in MAV, who advocates for zoloft. I briefly tried it, but didn’t give it a real chance.

Adam: I know you post the eMedicine article on MAV–I really love that article. In it’s first writing, it listed verapamil as first line, then when rewritten in 2006 by a new author, with former author still consulting, tompamax was top of the list. Now, it again lists verapamil first, notriptyline second and the neuroleptics third. Medicine is a moving target.

Medicine is trendy, and often the evidence is affected by drug company trials (like Lyrica getting the approval for fibromyalgia–not neurontin, which is closely related, but it’s off-patent.) I think that all drugs need to be considered, and care needs to be individualized. I get concerned when physicians adopt rigid prescribing patterns, all too often influenced by experts, who in turn are influenced by financial ties to drug companies.

If treatment of MAV (or even diagnosis of MAV) were simple, we wouldn’t have this forum.

Obviously, I’ve had a bad experience with depakote, and topamax so I’m overly influenced. Yet, as I said before, these are drugs that are very helpful to others. There’s a saying “mileage will vary”.

I’m glad Lyrica works for you. In my ideal world, prescribers would consider (and be aware of) all the options, listen to patient concerns and work with them to find the medication that provides the most benefit with the least side effects. And be open to lower dosing regimens, etc.

As Julie has said, it’s hard enough to have MAV, and then to have to negotiate about treatment makes it even harder.

Again, thank you so much for hosting this forum.
Kira

Julie,
I’m from Chicago also.
Kira :slight_smile:

I agree with all of the points of view in recent posts. I think finding the right medication is difficult. And I agree that drug companies heavily market new drugs. But on the other hand, we are dealing with a disorder that is sometimes difficult to treat and many of us would jump at the chance of trying a new drug as soon as it comes out on the market. This disorder makes you desperate. There is no reason, of course, to jump to those drugs first, though.

The other thing to keep in mind is that MAV is probably not a unitary diagnosis. There is a tendency to think that because it has a name, it is the same disorder in every person. But its not. We all have different symptoms and symptom patterns. We have varying degrees of vestibular involvement, menieres, depression, anxiety etc. So it makes sense that different drugs will work for different people. Also, being a medico myself, yes we are exposed to drug company marketing. But I also know that after years of experience, you get a feel for what is probably going to work for a particular person. So if someone with expertise in the field says Topamax, I would be inclined to take it seriously.

Rob,

I believe you are right about this constellation of symptoms not being easy to pin down with a single diagnosis. I am ill, with, as my doc put in his note “comes closest to vestibular migraine.” I am happy with the diagnosis only because it gives me the chance to get treatment, and the bottom line for me is finding a way to be more functional and less miserable, i.e., to cope with having to get through each day for the next 30 years or so. I agree, we are desparate and I am grateful for the chance to try any med offered which I am not contraindicated for. I am glad that Topamax and the other anticonvulsants are available, because I may try them some day. But I have had to become very active in making sure that the prescription is individualized for me. I feel lucky that, so far, my doc is responding to my input in a positive way.

Julie

Rob, what an excellent phrase: MAV is not a unitary process. I completely agree. I’m also in the medical field, and I do think that medication suggestions can be influenced by expert opinions, personal experience with the medication, experience that your patients have experienced. Here in the US: we have “speakers bureaus” where drug companies pay experts to give lectures. It’s so hard to know if the information you get is unbiased.
So, I think patients need to have a partner in the process who is open to understanding the patient preference and tailors the prescription to the constellation of symptoms that the individual patient has. And is willing to adjust the course, when needed.
Kira

One thing I’ve appreciated about my doctor is that he does not appear to be prone to fads, and might even be an idiosyncratic, non-conformist thinker in some areas, while maintaining a very low key demeanor.

I met with him for about 45 minutes yesterday, and we went over every detail of what occurred in my treatment plan from the time I last saw him (3 months ago). We talked about adjustments in my treatment plan, what results we should look for, and then a follow-up plan if the adjusted plan doesn’t work as well as we’d like. We talked about certain drugs, and he surprised me a little bit by mentioning one particular drug that he was considering if my adjusted plan doesn’t work. I spent about 1.5 hours the night before the appointment going over MAV and Meniere’s drugs, and it was one that it isn’t typically used, and he planned to use it in a very low dose.

Sounds like a good doc who is truly interested in taking the time to get you healthy. I find that an unusual quality in doctors today. Out of curiosity, what is the drug he is considering?

Hi all just popping in on this chat, has anyone tried Namenda its an dementure or allziemers drug and seems to be the newest trial drug for Migraines ect. thanks
Jen

— Begin quote from “Julie”

Sounds like a good doc who is truly interested in taking the time to get you healthy. I find that an unusual quality in doctors today. Out of curiosity, what is the drug he is considering?

— End quote

Extremely low doses of Effexor/Venlafaxine. It fits me because I have a chronic condition, and I get both head and neck pain. I ride a stationary bike about 25 to 30 miles per day, partially to dull the pain in my upper body.

To be sure, this drug is definitely not right for everyone. If a person has high blood pressure or is prone to certain other side effects, simply put, it’s the wrong drug. It’s classed as an anti-depressant and there have been some problems with it…usually at the higher doses…but still…it can be a problem. Still not sure if we’re going to go that route yet. I think some of the treatment adjustments he’s made on my last visit could prove to be effective.

The Ambien was a real problem for me (my GP prescribed it), and was definitely a mitigating factor in reducing the impact of the treatment regimen I went on in August. It increased the ear fullness and disequilibrium. Although the specialist I go to is extremely experienced and has conducted a voluminous amount of studies in various areas, he’d never seen Ambien have that kind of effect. Best conclusion is simply not to use it.

Personally, I wish my MD’s were more invested in working through the issues with me. My first neurologist saw me, did some testing, and when vestibular rehab was a spectacular failure: just said he’d prescribe meds and don’t bother to come in. He never would give me a diagnosis or prognosis.
My current otologist is a great person. And, we’ve kind of agreed that things are tending toward better, and be realistic about limitations and continue the meds.
What happens is that I get frustrated at the chronicity. I am better. But I still have symptoms, limitations, and things I avoid. I don’t think there are any other medications to try right now. We did try some zoloft, and I didn’t tolerate it well.
I realize that I’m stable, and there’s no compelling reason to try a new approach right now, but stable doesn’t mean no symptoms…
Kira

— Begin quote from “kira”

Personally, I wish my MD’s were more invested in working through the issues with me. My first neurologist saw me, did some testing, and when vestibular rehab was a spectacular failure: just said he’d prescribe meds and don’t bother to come in. He never would give me a diagnosis or prognosis.
My current otologist is a great person. And, we’ve kind of agreed that things are tending toward better, and be realistic about limitations and continue the meds.
What happens is that I get frustrated at the chronicity. I am better. But I still have symptoms, limitations, and things I avoid. I don’t think there are any other medications to try right now. We did try some zoloft, and I didn’t tolerate it well.
I realize that I’m stable, and there’s no compelling reason to try a new approach right now, but stable doesn’t mean no symptoms…
Kira

— End quote

Very well said.

Thanks. It helped me understand my frustration, when I saw it in writing.
Kira

Hi Kira,

Having said what I said, I have also come across MDs who were very unhelpful in my search for an answer to this problem. The worst ones, I agree, are the ones who don’t listen to you, especially when they may not be the most expert in neuro-otology. I had a neurologist tell me that my left-sided tinnitus was unrelated to my dizziness and that it was due to noise exposure, even though the tinnitus and dizziness started at the same time. When I asked him how one gets noise exposure in one ear only, he asked if I do rifle shooting! When I said no, he had no other answer, other than to maintain it had no connection to the tinnitus.

Kira, some of us in Australia have been having a bit of success with Lyrica. And jennyd, I have read about Namenda (memantine) but I have not heard of anyone actually trying it. It would be great to hear from someone who has tried it.