Do the right meds feel ok straight away?

I wondered if the meds that are going to help an individual with MAV are the ones which don’t seem to make you feel worse when you start taking them? Obviously the particular meds in question will vary for each person.

I found that when I started nori, despite getting side effects like racing heart and shortness of breath, it didn’t make my symptoms of dizziness worse and it helped my neck pain and fatigue straight away. I also noticed Muppo said that gabapentin helped her straight away will no ill effects. I know lots of people say meds make you feel worse at first etc but I wondered if in actual fact the meds that are really going to help you don’t make you feel worse first but instead they help your symptoms straight away even if there are some unrelated side effects. I find there is usually a difference between side effects (which you can easily distinguish as such) and your actual MAV symptoms being exacerbated or made worse. Just wondered what people thought based on their experiences. Did some people have an experience of a med making their MAV symptoms loads worse for a while but then after a while the med started to help loads (maybe topamax is a med where I have heard this has happened). What do people think…

Jem,
My personal feeling is that the right med will make you feel better, not worse. I have heard that from Dr. Hain, and also my psychiatrist…who wrote a book on brain chemistry. There are plenty of stories on here of people feeling worse before better, so it is individual . My thought is that yes, the brain did adjust, but it makes me wonder if another med would have been a better/quicker fit.
I know for sure that Topamax is one of the biggest offenders for worse before better…

Kelley

the 2 meds that did help me didn’t make me feel any dizzier at first- though others on here have different experiences. in my experience if the extra dizziness doesn’t go away within 2-3 weeks, it won’t- but again- that has just been my experience.

The meds that have helped me the most made me feel worse before they made me feel better, but in terms of dizziness, that period of worse was pretty fleeting (a week or two tops) and the type of dizziness didn’t feel quite the same as my regular day to day dizziness if that makes any sense. Some of the other side effects stuck around, but not dizziness. Of course, YMMV. Some meds can be kind of tough to adjust to, and knowing this I try to give them at least 6-8 weeks before giving up on them unless there is some major serious side effect going on. That’s just my preference though.

I am being helped by propranolol and it didn’t make me feel worse to start with. I haven’t had any side effects I am aware of so it clearly suits me. I started to notice improvement as the dose went up. It’s an interesting point Jem and it’ll be interesting to see the different responses on this thread.

I found my pizotifen took about 4-6 weeks to be effective. But I didn’t have any awful side effects to endure, just extra tiredness to start with and then it stimulated my appetite. I’ve also taken propranolol and that is more rapid in effect, but not as beneficial. I don’t get any negative side effects from propranolol. I can see that some meds give you mild side effects that you get over (e.g. dry mouth, or feeling a little queasy, or more tired than usual), but I find it hard to see how something could give you such bad side effects that you feel appalling but then make you feel better. But that’s just my personal opinion, not based on scientific fact!

Topomax didn’t make me “feel” good in the beginning–as it made me feel stupid and sleepy and all that…but I wasn’t dizzy and off balance within a couple of weeks. I started at such a low dose I don’t think it did ANYTHING other than make me tired at first, but once I was up to 32.5 mg/day I think I started to notice days without fog and once I was up to 50 mg/day I had a couple of decent days mixed into the quagmire. By 75 mg/day I was sure that the antimalarials I was taking for a coinfection for Lyme disease was curing me–only to find out a week later that I was completely negative for ever having Babesia!!! That’s when I decided that this thing was MAV and not Lyme. Topamax affects migraine brain–and apparently, given all the treatments I had tried prior–it was what was working FINALLY.

Now–a few months in–I have to say that I spend several days in a row not noticing any issues with MAV. I do appear to have other issues, but the MAV seems to be well in hand with the Topamax and with the lack of concern over having MAV (which comes quickly when you find out you have something else to worry on :roll: ).

Thanks for all the replies. It does seem then that for most people the right meds help pretty quickly or at least don’t tend to make their MAV symptoms worse x

A Really good question… I was wondering the exact same thing…

Dr S started me on Gabapentin, which I, after 2.5 weeks of a steadily increasing dose got terrible headaches on - I was completely non-functional when I got to 400mg. I felt much better once I was off of it despite being back to ‘normal’ MAV symptoms.

My Doc then started me on Topamax, after a good first day with some slight improvements all round I’ve been gradually getting worse. The Visual motion issues are noticeably much worse as is the light sensitivity! I’m quiet newly diagnosed with MAV (3 weeks) and don’t want to appear as though I don’t give meds a chance but just how long do you give these things when they make you feel worse !? I’ve only been on the Topamax for 5 days… Just using the laptop to type this is making me feel queasy.

Any feedback gratefully received!?

Cockrel-I understand completely where u r coming from. I was put on pregabalin by dr surenthiran 3 months ago. Initially I got lots of headaches, they I had a bad vertigo attack and then yesterday I hAd a full blown migraine aura for 30minutes and the most painful migraine I have had since my teenage years. These migraines disappeared when I developed constant dizziness 6 years ago. I spoke to dr s secretary and dr s wouldn’t speak to me on the phone so I have an appointment in a months time.
This does all sound like pregabalin may not be the drug for me but 2 years ago I was housebound before starting amitriptyline and it was 4/5 months on this drug before I began to see improvements and I also had migraine auras when things started changing. I did see dr s a month ago and he said an increase in headaches is not unusual because it can be migraine changing form from dizziness to pain. However this severe migraine attack is making me question whether pregabalin is right for me :frowning: but I know things can change even get worse before getting better and it can take months.

Anyone else experience an increase in headaches or classic migraine when starting new meds?

Hi all,

This is a very interesting, I too am having increasing symptoms with my new med gabapentin. I can’t recall how I felt when I started nori as I was in such a mess I’m not sure what was migraine & what was med! When I first started gabapentin about 20 minutes I have taken it my head would feel all swimmy if that makes sense?! I actually tried to call Dr S today to ask him if this is the right med for me, but his secretary is on holiday until Tuesday.
Becks, that’s a bit of a pain that you have to make an appointment to go & see dr s rather than a quick phone chat. Would his secretary not ask a question for you?
I’m getting a lot more headaches now, im guessing from what Dr S said that’s a good thing! I’m so over this crap , it’s mav’s 2 year anniversary next week for me x

Hi Anna
I was surprised the secretary didn’t suggest I could have a quick chat with dr S. I was under the impression he quite often does this. I think maybe be has stopped being so accessible recently. I am a little bit annoyed really. It costs enough to see him!!

Hi Becks,

I only spoke with Dr S, Sec last week and she spoke to DR S on my behalf. Perhaps you just caught them on a bad day!

I was told via his Sec that the increase (and severe increase) in Migraine attacks on the Gabapentin was a side effect and that I should slowly come off of them.

You are right, the phrase “things could get worse before they get better” was used but was not the case for the Gabapentin, especially on such a low dose, if it helps. I had only stepped up to 400mg but was struggling at 300mg. A lot of patients get over 2000mg, so I think in answer to the forum sometimes you do know straight away if they are not the right meds for you.

Dean

Hi Cockrel01

In the time I have been reading/researching about MAV, Topamax seems to be the exception where everyone seems to feel worse before getting better on it. So I wouldn’t be concerned about that just yet. You have only been on it 5 days and most people on Topamax seem to have to reach a much higher dose before seeing any improvement and usually each increase causes worsening symptoms. I haven’t tried it myself but everyone on it seems to find this.

I am sure I read somewhere in a MAV article by a specialist that 50% of MAV patients tend to respond well to the first medication they try and the other 50% struggle. I know there are plenty here who don’t fit into that as they have found a good med after many bad ones. Thought it was an interesting view point though x

Hi all,

Dean , interesting, did he put you on another med over the phone? I too am struggling with gabapentin as I posted earlier but am not due to see him until September :shock: so I don’t want to have to wait until then for him to prescribe another med!

Thanks a lot x

Hi Anna,

He didn’t prescribe a med over the phone but told me to see my GP about another Migraine prevention Med. One thing I learned from this site actually (I think it is listed on the ten commandments section) was that once you have been diagnosed with MAV you do not need to wait each time to see your consultant to have your meds changed.

My GP put me on to Topamax which I’ve seen DR S presribe to patients previously although it appears he prefers Gabapentin these days.

If I were you I would call his sec again, explain your symptoms and ask whether you should try something else via your GP. I totally understand where you are coming from. I’ve had 10 months of this rubbish already and certainly don’t want to waste time on medication which clearly isn’t right.

I guess you can only judge your symptoms yourself but I clearly knew it wasn’t right for me, with the Topamax I’m not so sure yet, it may be worth sticking with as I’m not in horrific pain, just can’t do the things I enjoy. :frowning:

Dean

Jem,

Many thanks for your feedback. This forum is a godsend…

My gut feeling is to stick with the Topamax for now - Apart from Jaw ache and dull headache I’m not in a great deal of pain, so I can tolerate it at least. I’m certainly slower mentally, even more so than I was originally from MAV brain and as I mentioned before the visual symptoms are definitely worse. But I can put up with these things in the short term, especially given the success other posters have had on it.

I am currently off work whilst I try to settle down on a med. I had coped for the past 6 months but I have a 2 and a half hour commute to london each day and spend all day in front of a computer. I just couldn’t tolerate it at the mo. Luckily they’ve been quite understanding.

Dean

Thanks Dean, yes that was my plan to try and call him again on Tuesday after the bank holiday. My Gp’s a bit useless and he won’t prescribe anything - groan! But at least if I can speak to him I might get somewhere!
Thanks a lot! - hope the topamax is your wonder drug! X

Hi all :slight_smile: I’m the same as Katherine. Propranalol has helped me a great deal and I haven’t really suffered any awful side effects from them. Possibly more sleepy as the dosage increased and feelings of dizziness when standing from a sitting position. These I can cope with. Much better than the 24/7 rocking!

I have got to say that my anxiety decreased hugely as soon as I started taking propranalol which obviously helped. So all in all I would say that these meds felt right from the start. They did take a while to help with the dizziness, approximately 2 months, which was sooner than I had expected.

Hope you are doing ok Jem

Kathy x xx

Topamax helped me by far the most and it made me feel like absolute crap when I first took it. It made me feel worse than i did on no medication at all. So I don’t think this theory is sound.

I think it just depends on what medication is going to help you and the individual properties of that medication. For example, it seems pretty common for Topamax to make people feel worse before they get better.