We are both suffering for years from a chronic form of Vestibular Migraine and visual dizziness. In addition, Agnes has Mal the Debarquement syndrome. In recent years we have both tried quite a few things to get better. One more successful than another. SPOILER: So far there was nothing what really made us permanently better!
Because we know that there are also fellow sufferers reading this blog we thought it would be useful/fun to review everything we have tried so far. Please note: We are not doctors, before you try anything, always consult with your own doctor. This review is based on our experiences with our complaints.
We use a scale of 5 stars, where 0 is a bad score and 5 is the best score. Here. We. Go.
Flunarizine ✰ ✰ ✰
We give the Flunarizine 4 stars. We took Flunarizine in consultation with the doctor in different quantities, varying from 2.5 mg to 10 mg. This drug made us able to do a little bit more and our head was spinning less at times. But this was not a real answer either. We could do a little more during the day but we were still exhausted by the beginning of the evening. But by far the medication that has worked the best! The major disadvantage of this drug is that it can only be used temporarily. This is due to the risk of serious side effects in both short and long term. As soon as you stop this drug you’re back to square one.
Flunarizine has also brought us something very important and that is a diagnosis. Because we both respond well to the Flunarizine, the diagnosis Vestibular Migraines is confirmed. So we could finally say goodbye to the opinions of the people and doctors in our environment who said it was ‘between the ears’, it was a burnout, there was a PTSD or it all sounds like a depression. What in itself was not a strange thought though, since 15 to 20 % of people with a mTBI (read here why we call our chronic vestibular migraines a mTBI) develop symptoms that match mental illnesses like PTSD, panic disorders, OCD and depression.
The people who know this struggle will also know how nice this is. With which we absolutely do not say that it is a shame that you have a burn-out or a PTSD. But we have never recognized ourselves in the psychological complaints and the stress symptoms that are associated with this and so we could not do anything with these terms. We did wish we recognized our selfs in this because then we had the space and the opportunity to work on it and therefore perhaps get a bit better.
Paula: It has helped me through the first period of my sickness. From being fit to not even get out of bed or being able to take care of my own newborn and toddler. That period was very dark. And I don’t know if it came through the Venlafaxine or somewhere else but I’ve endured it. Furthermore, it did not do much to my symptoms and, beyond the enormous detoxification symptoms, I have not experienced any negative effect after stopping this medication.
Agnes: I was given Venlafaxine as the first plea after a heavy vestibular migraine attack. We didn’t know what I was suffering from, but Dr. Google knew ;-). I have had this drug in different doses due to slow tapering on and also very slow tapering off. maximally I took 50 mg a day. I don’t know how much this drug has helped me: Yes I became a bit better but wasn’t this partly due to time?
Eventually I felt that it didn’t do enough anymore and I found the side effects too heavy (scary dreams and night sweats, yuk!). So I started tapering down and that was a good idea, because at Cognitive FX they prefer not to take any medication during the treatment. But always consult first with them and with your prescribing physician! Currently I am working on the last part of the tapering and that is still a b*tch.
We both took this up to 50 mg. This drug wasn’t Paula her favorite: ‘Boy o boy how I felt miserable during the tapering on, the period on it itself and the tapering off. There was also a lot more headache. So this was short-lived (well again 2 months further).’
Agnes: It did work to relieve some symptoms of the Pulsatile tinnitus, the constantly throbbing sound and the rocking feeling were finally somewhat softer/milder. Unfortunately, it did nothing against the dizzy spells and the hypersensitivity to light and sound.
However, I recognize the side effects of Paula as well. What also disturbed me was that my head just didn’t work well with it. For example I wrote uarrom while I meant narrow, I saw that something did not go well but did not know what. Agnes her husband has had a lot of laughter because of the many mistakes I made while talking it.
Betahistine was a try from the GP. Scientists are quite doubtful as to whether this drug works. Usually it is prescribed in Meniere’s disease. I got it when I was really very sick. My pulsatile tinnitus was at its most violent and the MdDS made sure that I could not keep food inside. A terrible pounding and rocking head 24/7.
I took, as directed, two pills of 16 mg equally consecutively. Within an hour there was complete silence in my head, a bizarre sensation. It was so bizarre that I thought I have died, so had to feel death… Total rest. No sounds and rocking on the rhythm of my heart rate more, nothing at all! But did I still live? I checked my wrist and indeed felt my heart rate there. I have so enjoyed the silence in my head those days.
Unfortunately, I suffered from unusual side effects. I got breathing difficulties and my heart rate started to get erratic. Betahistine is a histamine maker and since I’ve always had allergies, my body violently reacted to the excess of histamine. I tried to solve the trouble in consultation with the GP with an asthma inhaler. But then the rocking and thumping came back immediately. So unfortunately it was not a solution for me.
Later, when I was slightly better, I tried to build up this medicine more cautiously, hoping that the side effects would stay out, but unfortunately the side effects came before the positive effect showed.
Emesafene ✰ ✰ ✰
This medication is usually prescribed in women who are pregnant. It suppresses the nausea super well. To me this drug doesn’t have a lot of negative side effect, it does what it has to do. It is not a longer term fix because it does not remove the problems in my head but not feeling nauseous at times is a godsend.
This is called a benzo. And with benzos the biggest problem is that they are terribly addictive, so you need more and more of them. However, it is on our list because it is a medicine that we use very rarely. Alprazolam is actually our last resort. When your body gives all the signals that you are going over your limits and you still have to go to the swimming of your daughter or to that one concert of the Backstreet Boys or a move that was planned. Then there is Alprazolam, the savior in distress who is holding you together in one piece for a few hours.
The hangover comes later in this case and that is not because of the after effect of the medicine, but because you have gone far across all the boundaries and have to pay for it (sometimes for weeks). But in some cases it is simply worth it.
Over The Counter
Cinnarizine ✰ ✰ ✰
Cinnarizine is a anti nausea during travel tablet. This tablet is actually a much lighter version of the Flunarizine. Cinnarizine works for both of us in case of an emergency. Unfortunately it makes us drowsy and is therefore not suitable for everyday use. It mainly dampens the nausea and this can be very pleasant.
Gingko Biloba ✰ ✰ ✰ ✰
We do have the idea that this is some what working for us. We have become slightly clearer in our head and as soon as we start tapering down with these pills we feel an extra pressure in the head. No 5 stars because this is apparently still not the answer what we are looking for.
Fever Few ✰ ✰ ✰
Fever Few is similar in effect to Gingko Biloba.
We took this one or the other. Both of them stimulate the blood flow in the head so taking them at the same time is not advised. It feels as though it is slightly smoother in our heads. As a result, the dizzy spells are down a little bit more and we seem to be better at handling sound and light. It sometimes gets the sharp edges off.
Omega 3 ✰ ✰ ✰
This is the only supplement (at least Omega 3 in all forms) which is also advised by Cognitive FX. They indicate that it is important to take 2000 mg per day. We took fish oil for a while but were did not take this advised dosage. This daily dose, like the above products, makes it all feel like a little easier. Also now with tapering off of the Venlafaxine for Agnes, it really helps! Note: there is really a difference in fish oil quality, so do good research before you start.
Agnes: This is a capsule where all the important vitamins and minerals are included for people with migraines. I usually order it here. I sometimes don’t know anymore what works or what does not work, haha. But what I know about this one, it’s ideal because it’s all in 1. Also, I notice that within no time my dizzy spells are fiercer when I stop using this supplement.
Agnes: Vitamin B2 makes my dizzy spells much worse. A lot of medicine you have a worsening of the symptoms when you start taking it, but I could not push through this one. This vitamin is high on the list for people with migraines and they also clearly do something in my head, but for me it does not have the right effect.
Visual Therapy in Antwerp ✰ ✰ ✰ ✰
In October 2017 I, Agnes, went to Antwerp for a week of visual therapy. I had to do several exercises in the dark twice a day while looking at a rotating disc with luminous dots. O, I was so nauseated in the beginning. Fortunately, this was getting better over the course of the week. This therapy was in research so is unfortunately no longer given in Antwerp. The doctor in Antwerp says that they are working on it to offer this therapy standard.
Unfortunately, the results were not permanent and also did not cover all my problem areas. Yet I give it 5 stars because I have made so much progress. However, this is something you should use permanently. Our father has now rebuilt the turning disc. The dots still need to be placed but then I can start the therapy by myself. This is going to make my life a little bit easier.
Psychological support ✰ ✰ ✰
Paula: With everything that happened over the last 3.5 years it was very nice to be able to share this with someone from out of my inner circle. I was able to process the traumatic moments I experienced through EMDR. I have really learned to be kind for myself and to not always want to defend myself (that is a strong one people).
Agnes: I have spoken with the psychiatric nurse after my blood loss. To get talk through the story a couple of times and to sometimes cry about how much life has changed. This was really helping. Over time, this was becoming less necessary. When I wanted to intensify this contact, I got different nurses every time I went. This was not working for me and so they sent me to a psychologist.
However, the tests showed that they could not diagnose me and therefore could not offer therapy or conversations. I was allowed to choose from a number of diagnoses, but I rejected it in consultation with my GP.
Manual Therapy ✰ ✰
We both did this in a fine practice in Drachten. The moments of relaxation were fine. This in combination with talking about everything was also fine. Unfortunately, this didn’t do anything for the long term, it was fine for that moment but did not fit in with the search for a more permanent solutions.
Vestibular rehabilitation (physical therapy) ✰ ✰
Paula: For the period after my attacks it was a good rehabilitation to follow, I have become somewhat more certain. Earlier I searched my balance more in the stuff around me, here I learned trusting my body again. And with that in my mind, repeating this trajectory is no longer necessary either.
This has already become quite a long list. We are also sure we have forgotten things, so perhaps we will supply this blog with a little more later on. Besides the medical side, we have of course also adapted our life to reduce complaints, we will write a blog about this later.
Again the advice to always consult with your doctor before you change anything in your regimen. If you have any questions, feel free to ask via firstname.lastname@example.org.