Depression

Hi all,

I just wanted to pick some brains on the subject of depression. I’ve had MAV for 18 months but was only properly diagnosed about 9 months ago and am under the care of DR Surenthiran. I’m currently taking 120mg propranolol, 75mg nortriptyline and 1.0mg pizotifen.

I’ve had lots of ups and downs as I’m sure many of you will relate. I’ve noticed that when trialling meds which have a depression effect my symptoms seem to be much worse. I’ve started but had to abandon trials on topamax, gabapentin and pregabalin as they all made me feel miserable. I’m experiencing the same effect on pizotifen, which is making me wonder whether i have an underlying depression issue, which is exacerbated by some medications and thus lowers my migraine threshold.

A couple of examples I can think of were when I thought sugar and secondly food additives were the root cause of this. My mindset competely changed to one of happiness, relief and positivity. My tinnitus completely dissapeared for a few days and my ability to use computers etc improved by about 50%. When the temporary euphoria of this wore off, things returned to the same baseline. My best days since diagnosis have been on propranolol and nortriptyline as a combo. The nort being the anti depressant seemed to give me the greater threshold.

There is a history of depression on my mums side, which is leading me to believe it may be a cause rather than a symptom.

My intention is to continue with the piz til my next appt on 29th April, which will hopefully give it long enough for the depression effect to lift and hopefully see some benefits.

I just wanted to hear from the fine folks on this forum whether they have any experience of depression with MAV either as a cause or a symptom. Which meds have helped you and did you find a depression effect from meds other than anti-depressants ?

To add: Dr Bucholz (heal your headache book) lists depression as one of the leading underlying issues which prevents patients from making a full recovery/respond to treatment.

Thanks for reading

Dean

Hi Dean,

From my very limited experience with MAV, I would say that depression DOES prevent you from getting better. I went into depression when all this hit and had massive brain fog, inability to focus, concentrate. I was depressed because I was ill, I was anxious because I was ill, it was a never ending cycle. Through a combination of Nort and lifestyle changes, I am trying to turn my life around to get a better perspective of all this. And with that I slowly started feeling I could concentrate, I could work and do all the things I loved to do if I stopped worrying and obsessing. So by removing the depression I am getting control of the disorder, I have eliminated the brain fog and I am not letting it control my life. From that point of view, I got better within months, and I think there’s lots to MAV that’s unexplored territory with regards to anxiety/depression.

Absinthe,

Thanks very much for your reply, it’s good to hear your opinion on this.

The viscous cycle is certainly something that rings true. Personally I think that depression is worse due to the illness but I believe there was something there which knocked me into this state and is perhaps keeping me there.

Can I ask what sort of actions you have taken to overcome te depression (if you don’t mind) ? Also are you able to say what dose of Nori you are taking ?

Also did you find during med trials that some medications made the depression worse and therefore had a negative affect on the migraine symptoms ?

Thanks

Dean

I think the depression/anxiety circle was worse in me than I’d care to admit at first when it kicked in. I slowly realized my biggest trigger was stress. I was in over my neck with work, but once I was able to I just went for it. That meant cutting commitements and taking on extra stuff that wasn’t strictly necessary, and to talk to everyone close about my condition so I felt it was “off my chest” and I wasn’t trying to hide anything or act normal, which would again contribute to stress/anxiety. This was really necessary to get me to some sort of baseline… like this is me, the “new normal” and with symptoms and without any added stress factors. The rest I attribute to eating better food and keeping at it with exercise. I know Dr. S says gentle exercise, but I am lucky with my variant of MAV, I actually feel my best while working out and also after, so its just a way to keep doing it.

As for Nort - I am on 40mg and its early days, still is the first drug I trialed so I am not sure if it’s going to be the one for me, but it’s doing something (symptoms better about 20-30% at the moment) and that’s better than nothing… Nort definetly started to… “un-depress” me. If anything. After the initial zombie-like feelings, I got out of bed and started doing things.

At the beginning, me and doctors thought all of this anxiety related, I know that’s not true now - but still I feel that depression and anxiety has their part to play with MAV for some people and that there’s a lot of grey areas where this condition overlaps with anxiety disorders…

Hi Dean,

It’s interesting that you mention that Gabapentin had/has a depressive effect, I wasn’t aware of this.

I’m currently on 10mg Nort and 100mg Gabapentin (both VERY low doses). I found the Gaba has helped with some of the anxiety or at least made me feel a bit calmer, but can’t tolerate a higher does of it due to drowsiness. I know drowsiness tends to make me feel depressed, which is why I couldn’t get on with propranolol. I hope the Gaba isn’t also doing this to me as well.
I did try getting on to a higher dose of Nort but found it tended to increase my insomnia and increase my anxiety.
Currently I’m adding 5-HTP which does seem to have a positive mood effect, but I’m building up slowly now due to some nausea when I jumped in a bit too keenly with it at first.
If I can hopefully get to a stable does of 5HTP I’m wondering if I should stop the Gaba.
I should add that I’ve been adding much more regular exercise recently and it’s had a positive effect on both my headaches and mood even if it’s often short lived.

— Begin quote from “stewjay70”

Hi Dean,

It’s interesting that you mention that Gabapentin had/has a depressive effect, I wasn’t aware of this.

I’m currently on 10mg Nort and 100mg Gabapentin (both VERY low doses). I found the Gaba has helped with some of the anxiety or at least made me feel a bit calmer, but can’t tolerate a higher does of it due to drowsiness. I know drowsiness tends to make me feel depressed, which is why I couldn’t get on with propranolol. I hope the Gaba isn’t also doing this to me as well.
I did try getting on to a higher dose of Nort but found it tended to increase my insomnia and increase my anxiety.
Currently I’m adding 5-HTP which does seem to have a positive mood effect, but I’m building up slowly now due to some nausea when I jumped in a bit too keenly with it at first.
If I can hopefully get to a stable does of 5HTP I’m wondering if I should stop the Gaba.
I should add that I’ve been adding much more regular exercise recently and it’s had a positive effect on both my headaches and mood even if it’s often short lived.

— End quote

Does your doc know you’re mixing nori and 5-HTP? It is usually a bad idea to take them together.

OP - In my experience, some people have a clear cut cause and effect going on, and for others, it is a vicious downward spiral in which it’s hard to know exactly which hit first - depressed because you’re sick, sick because you’re depressed, depression gets worse, then sickness gets worse, and so on. Breaking that cycle has been vital to me. I am not “cured” by any means, but I ended up needing a combo of meds and limited therapy to get back on track. I was in a VERY VERY bad space. I am much improved, but I still struggle. I think (and so did my therapist) that being depressed is a very real part of chronic illness for many - it is a grieving process over the loss of your health, independence, and whatever else. It’s okay to feel sad, but becomes detrimental when you get trapped in that state of mind. I don’t think depression is a cause of MAV (though depression can indeed cause physical symptoms that are similar) - meaning that if you have been properly diagnosed, I don’t think you likely did this to yourself because of depression. That said, depression can and will aggravate the condition and your recovery process. Treatment from multiple angles may really help you, and it’s awesome that you recognize that you may be suffering as that puts you in a great position to seek help. Good luck to you.

Thanks all for your thoughts, it’s interesting to hear of your own experiences.

Stewjay - As Dizzyforlife mentions, I would stop taking the 5htp with the nort. As with St. John’s Wart it can lead to serotonin shock syndrome. As for the Gaba, depression is listed as one of the common side effects. I had the same probs as you on a low dose (300mg).

Since my original post I’ve taken a couple of pretty big steps on my path to recovery. I’ve talked to my wife and she agrees that there is likely a depression factor involved. She said that I keep myself to myself a lot and can quite withdrawn. I also spoke to my mum who was not at all surprised. She has suffered depression for most of her life (she had MS) but he is doing well on citalipram.

I’ve contacted a nearby councillor and am hoping to set my first appt for next week.

As with the diet mods and subsequent lift of mood, I noticed the same effect here. I felt some temporary relief from taking my first steps and my tinnitus which is constant 24/7 - dissapeared. The evidence is all there and I’m no longer ignoring it.

Councelling is probably a good idea for any chronic illness sufferer, at worst this will help with dealing with this illness but I’m pretty certain this will help me with some long standing issues. I Have nothing to lose by giving this a go.

Dean

Hi all,

Just a quick update for anyone else who may believe depression/anxiety is an issue for them.

I lasted 8 weeks on the piz… It brought my mood down substantially and both my migraines and dizzyness were worse. My doc made the decision for me in the end as I was heading down hill pretty fast. I had such high hopes for piz having read so many success stories but once again I think it highlighted what a role depression plays with my symptoms.

Anyway, on my last visit to see my physio - Kay, she took note of my v low mood on the piz and concerns that depression may be preventing a recovery. I received a letter this morning from Dr Surenthiran saying that he has arranged an appt for me to see Dr Symonds - A psychiatrist who is part of DR S team. I see him/her the day before I see Dr S.

I’ve now had 4 councelling appts, which have been very helpful. It’s someone to talk to who won’t judge and you won’t feel guilty chewing their ear off. I always feel better having had a session.

If anyone is reading this, who may have possible depression issues which are standing in the way of your recovery I would strongly advise being honest with yourself, close family and your doctors. I feel better for not pretending anymore as am confident I’m on the right path to recovery.

Dean
Thank you for your posts regarding depression and I agree that we have to be very open and honest with ourselves regarding how we feel and whether meds could be affecting our moods in spite of the fact that they are helping our other symptoms. It is a very difficult position to be in as changing meds takes times and we just want to be be “well”!

I followed the same path as you. I couldn’t fathom why suddenly I felt very anxious, panicky and depressed. I had been on Topamax and Dopthep for some time and they were both helping my MAV. My doc referred me to a counsellor and talking with her was enlightening but I also realised that the possibilities of lifestyle etc. affecting my mood were low and wondered whether one of my meds could be causing the change.

My GP was sceptical that Dothep (an anti depressant) would be the cause but I decided to reduce the dose from 100mg and see whether it had any effect. In fact titrating down to 50mg stopped the panic and depression. My neurologist suggested ditching the Dothep altogether and taking an SSRI to help with anxiety which has the added bonus of also helping with remaining balance issues.

I hope you can find a med that doesn’t cause the depression - it’s bad enough coping with all the other stuff - just have to be aware!

Barb

Hi Barb,

Thanks for your post. That’s very interesting that an anti-depressant was actually worsening your mood. Which SSRI are you taking and do you think it’s helping you even further ?

Your absolutely right about the difficulty of letting go of a med after an often long titration to get to a helpful dose. Your topamax journey was a long one, so can only imagine how you would have felt if you to give that up.

I’m looking forward to seeing Dr S and the psychiatrist… I’m eager to attack this thing from a different angle. I’m feeling quite positive that adding an ssri or Nort increase may be what’s needed. The only obsticle is I don’t believe DR S tends to use SSRI meds although that may be different with the psychiatrist involvement.

Hi Dean
Possibly Dr S would go for a tricyclic anti-depressant first. He sounds such an excellent doctor with so much experience you must feel you are in excellent hands to make a good recovery! You’ll be able to talk your worries through when you see the Psych - this illness throws such a curved ball at us no wonder we go through awful anxiety experiencing some of the strange and often frightening symptoms.

I started off with Nortrip, switched to Prothiaden then to Dothep so had been on them for a long time (app 18 months). They were very effective initially, particularly with stopping daily chronic migraine headache. Perhaps they had stopped working for me anyway.

Now I’ve added Lexapro to the Topamax it is helping with the anxiety and visual vertigo - a big plus! Car travel has always been a difficulty with nausea and problems walking after a journey. Shopping in supermarkets/malls, etc where fluros affect balance has also improved.
Barb

I’ve suffered from depression for years and took an SSRI (sertraline) for eight years. I came off it in 2012 (pre Mav) due to side effects I could no longer tolerate.

Having MAV has certainly worsened my depression at times. However, since November last year I’ve been seeing a clinical psychologist on the NHS (after a wait of almost two years) and the impact on my mood has been incredible.

Funnily enough, despite being a migraine sufferer herself, I think my psychologist was a little silently skeptical about the MAV at first but as the weeks and months have gone by she has seen my mood improve hugely while my dizziness has worsened slightly overall. She now seems to acknowledge the impact it’s having on my life much more readily.

Therapy has been invaluable, particularly as I can’t take SSRIs or tricyclics because I also have restless legs (not that I’d want to take them). Without therapy I’m sure I’d be an absolute depressive mess at the moment. Its very based on mindfulness which is very much ‘in’ at the moment. It works for me anyway.

I think on days when my depression is bad the MAV is worse. Even though dealing with the depression hasn’t helped the MAV, I think it’d be a lot worse if I were more depressed.

I wonder if Depression is the root cause of MAV, and not the other way around? Could MAV be linked to some brain chemistry imbalance and its underlying causes?

This summary of all the drugs used for treatment is very interesting:

Perhaps there is often some natural remedies to the imbalances, such as getting more sunlight, avoiding stress, etc. However I guess the stress involved in vestibular conditions creates a vicious cycle and some people need help to get out of it.