In a muddle with meds

Deleted the last one by mistake!

Hi there.

I’m going to save most of my long and complicated story for when I’m feeling less dizzy, but, in a nut shell, I’ve been 24/7 dizzy and migrainous for 8 weeks after banging my head and recently diagnosed by Dr Surentherin as having MAV.

This is my 3rd chronic episode in 5 years (previously undiagnosed) but this is by far the worst and most continuous it has been.

The last 2 episodes led me to depression & extreme anxiety (the result, not the cause) and so, despite my desperate protests, this is how all my symptoms were explained away. It took some serious mental gymnastics to believe that this was the case but after visits to several neurologists and an ENT, I had little choice but to accept it.

The impact on my life has been devastating. 5 years of questioning my sanity and doubting myself at every turn. That’s in addition to suffering the symptoms of the bloody thing, which are horrific enough. Quite frankly, I feel traumatised by it. I should feel the diagnosis is a relief, but I don’t. Somehow it almost feels worse? At least I had the illusion of control when I thought it was all psychiatric.

Either way, I’m still trapped in the hell of 24/7 symptoms.

I have a demanding job (which I’ve been off from for the last 8 weeks) and two young children age 5 and 3. I’m terrified of losing my job and completely overwhelmed at not being able to function or do anything normal with my poor children. So, guess what? I’m anxious and depressed. I’m also having daily migraines plus the whole spectrum of vestibular stuff.

Before I managed to figure out what was going on, I upped the dose of my antidepressant (escitalopram) and then pre-emptively started on pregabalin, which I’ve had brief stints on before because of the anxiety (and had some leftover). I did this because once I knew what was going on, I thought it might help.

When I saw Dr S, he was concerned that I can’t tolerate the pregabalin at the doses he normally uses (I can’t manage more that 150 and have never managed to stay on it for more than a few months before stopping) so he added pizotifen.

I lasted 4 days before stopping. I know that’s not giving it a fair go but I really couldn’t do it.

So now I’m even more desperate and wondering what’s left we can try. I have low blood pressure and am already on the max dose of an SSRI (escitalopram). Doesn’t seem there are many options left?

Goes without saying that I am extremely med sensitive.

Thanks for reading and (hopefully) offering hope of alternatives.

Solidarity. X

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I totally understand your anxiety, depression and frustration with this condition but I must take you to task over your statement that there are ‘not many options left’. Time to put your emotions to one side and educate yourself in more detail about MAV. I suggest you plough through the ‘Welcome’ section, read and thoroughly digest the Migraine Survival Guide 2014 which you will find there and seek out the User Poll section of the site to find the Medicines that helped you section. I could also suggest you search an older topic relating to there being 100 different preventatives on the market but I won’t do that because in practical terms only a small percentage of those are in general use and the User Poll should give you a more balanced approach and I appreciate your current lack of screen tolerance.

Step back and take a few (more?) deep breaths and have a good look around the site. Quite a few different drugs are used. Each individual specialist has their own preferences and many baulk at others and often at patients’ suggestions too. The NHS recommend three preventatives, Amitriptyline, Propranolol and Topiramate as first line preventatives. (Pizotifen is much out of favour these days despite it being a migraine specific drug unlike the others) Other counties are quite different. For example in US Venlafaxine is commonly used as are the new injectables such as Ajovy, Emgality etc. which are only just beginning to be used in the U.K. Search topics on any of these and you will see the wide variation of success at achieving control of the condition that exists because individuals tolerance varies so considerably. As you’ve recently had first hand experience with Pizotifen search it out and you will see it has helped many people. Have a read of Bel’s diary. I’m sure @Belindy will chip in with comments once she sees your intro. As might @Katharina another Pizotifen bod.

You have no cause to be desperate. You should get emotional support on here and Dr S is highly acclaimed in the U.K. The road might currently seem hard. It will certainly prove a rollercoaster. You will need more than a bit of true grit but it’s do-able. Good luck on the journey.

Why did you stop it?

Pizotifen is widely used in Australia and I have been on it for over a year now. I started with four tablets and I am now down to one. I found it very useful, but it is important to persist. The side effects are fatigue (which I found hard to deal with) and weight gain. I had no problem with weight gain, but it required daily weighing and careful eating.

Dr S. has a good reputation on this forum, so I think you are in good hands. If I was you, I would follow his advice.

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Thank you for replying to me Onandon. I appreciate it.

I have looked at all the resources (have been lurking here for a while, which is what helped lead me to Dr S and to my diagnosis) which have all been helpful.

I also appreciate the reminder not to despair.

With regards to meds, I can’t try another antidepressant medication while still on this one (that I’ve been on for a long time) and coming off/swapping would probably be a recipe for absolute disaster while in this state.

Dr S said that beta blockers don’t work (his words, not mine) and that he wouldn’t put me on many of the other usual suspects, as I have low blood pressure. I feel like this doesn’t really leave many options for what he would prescribe. Topiramate scares the hell out of me. I’m sure others have found great success with it but nonetheless, that’s where I’m at.

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Thanks Katharina.

I’m glad you’ve had success with pizotifen.

I am already extremely sedated on the pregabalin (which remains, even after I’ve been on it several months from past experience and is why I’ve always come off it).

When I added the pizotifen it was 10 times worse. I have 2 small children and that level of sedation is just not an option. I realise it was only 4 days but my mood just went even lower and made me feel I was drowning. Physically incapable of doing anything.

Hi there and sorry you’re in the position you’re in. You echo me in many ways… young kids, job I needed to return to, feeling like I was failing my kids, low blood pressure. The beastly twins, Anxiety and Depression, came knocking and I’m glad to say one has left - but anxiety remains. I was traumatised too!!! I really get you.

I started propranolol which I didn’t tolerate. I was on it for 3-4 weeks. Severe body fatigue, severe insomnia, depression - I was an absolute mess. I started pizotifen. Bloody life saver and generally, out of the many meds to choose has a relatively mild side effect profile. I was super sleepy - like didn’t wake till midday type sleepy the first night, better the second and continued until I reached 1.5mg. It worked fast - and considering I was not sleeping and off work I took the sleep as a blessing. It actually was brilliant and got me back to work. I was on it for 18 months and have now dropped it off my med regime.

What were your side effects? Perhaps give it another chance. Trust me, side effects of sleepiness goes quite quickly.

Once you find something that works, you’ll feel better. I think knowing the diagnosis now is a turning point for you as the meds you will try target the condition. Just keep swimming - you’ll get there.

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I never fancied Topiramate myself . Its profile certainly sounds a bit scary. There are other drugs used from the same class but I rather think their profiles might prove even worse. Most people have restrictions as to what drug classes they can safely take and that’s independent of the later trying and tolerating. It’s frustrating.

Maybe you need to try the various recommended nutraceuticals Magnesium, B2, Q10 etc combined with the migraine diet and other lifestyle adjustments, reducing stress etc. and see if that helps. Stress is often a major factor in the equation and Anxiety can so easily keep the cycle running. In some cases people even find they need a total life rethink including a change of career in order to cope with what can prove to be a chronic, activity-restricting condition. Others find a measure of success without medication.

You could enquire about the new injectables such as Ajovy although they aren’t available on the NHS to anybody who hasn’t already fully trialled and failed at least three orals previously.

Dr S comment re betablockers (extended release Propranolol got me sorted!) has forced me to add that, when stuck, it always pays to obtain a second opinion and the National Migraine Centre offer telephone consultations for a fee should you require another option.

Hi Spinning Out, sorry you are having a rough ride. I’d get in touch with Dr S’s secretary and leave a message (or write to him)saying that you can’t tolerate the Pizotifen on top of the escitalopram and see what he suggests "There “is always another drug to try” - his words to me when I had to go back to see him after my initial consultation as I wouldn’t (was too chicken to) take Pregablin. It wasn’t a big issue he said I could try Candesartan or Pizotifen to start me off and I went for the pizotifen. I think he often prescribes Pregablin if you say you have been having anxiety as “it cuts through anxiety, like a hot knife through butter.” He told me that the important thing was to get on a med (any med) and start trialling treatments. It does take a while for some meds to help as you need to build up to a therapeutic dose that suits you.

You could try another anti anxiety med like Effexor (Venlafaxine) XR or Noritryptiline (which I think DrS likes) instead oft he escitalopram that might be more effacious for both the the anxiety and MAV symptoms

The flowchart diagram at the bottom of this page lays out some of the treatment options:

It can take a while for Pizotifen to have an effect on migraine/Mav for some of us. I had some of the worst migraines ever not long after I started taking it but it wasn’t the pizotifen causing them, I just hadn’t got up to a high enough dose for it to dampen them.

Get in touch with his secretary. I think he is well used to people not tolerating meds and needing alternatives.

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I tried 4 different meds when i was first diagnosed and every single one of them made me feel consistently worse with each pill i took until i couldn’t tolerate it anymore. It did not wear off and get better the way other people describe even when i tried to stick it out. I thought nothing would work. Then i found Flunarizine and it worked brilliantly, i didn’t feel worse in the slightest. I was on it for 2 years but had to come off it because of drug induced parkinonism. Now i’m looking for something else to treat the vm which has returned since i came off meds. What i’m trying to say is that just because you might struggle to tolerate meds doesn’t mean there isn’t one out there that will work for you. There are beta blockers, epilepsy meds like topiramate and valproate, ssri’s, depression meds, and also the new injectable meds as well as botox and nerve blockers. There’s also supplements.

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A reminder to check out:

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Hi there im so sorry to hear about your experience. I cant imagine how stressful this must be. I know you mentioned escitalopram and being on the max dose? Could you talk to your doctor about going beyond that. The max dose is given by the pharmaceutical company but from what iv read it isnt unheard of for psychiatrists to prescribe above that.

Topiramate scared the hell out of me as well!
I’m one of those people that - if there’s a side effect- I usually bloody have it! My body tends not to like foreign substances and reacts accordingly!

But topiramate seems to have had some measure of success with me-it’s not got rid of my problem but it’s definitely reduced and isn’t as intense- and I don’t appear to have suffered a single side affect at all from it!!!

I think it’s a case of trying different things until you find one that works for you.

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Topiramate was terrible for me… i could only take it for 4 weeks before i had to quit. I felt really stupid and had terrible suicidal thoughts.

Hi there, have you kept a diet journal? Your diet could be part of the problem possibly.

Look into heal your headache diet

Also a couple good books are:
Victory over Vestibular Migraines by Dr Beh
Heal your headache by Dr David Bucholz
Both are EXCELLENT books you can purchase on Amazon. They both are neurologists that wrote these books. They talk about the various medications they prescribe and also DIET.