The Migraine Associated Vertigo Community
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Another new guy...here's my story

Long-time lurker from the UK but now finally decided to join the discussion and hopefully give and get some support among this brilliant community from now on. Thanks for the help you’ve already given me just reading your stories and replies. Here’s mine…

Back in February, I suffered a Vertigo attack. I span out for 45 minutes, vomiting along the way. It only ceased when the ambulance arrived and administered drugs and a drip.

Up to that point, I had some warnings - a far smaller occurrence of vertigo months before and several feelings of dizziness along the way. But, following the February attack, I’ve suffered with what has been diagnosed as MAV.

My theory is that my original Vertigo was a combination of MAV with perhaps another Vestibular problem. I say this because I had other symptoms – nausea when using ear/headphones – that indicated that there was something else amiss.

But, certainly from April onwards, my symptoms resembled MAV and only MAV.

I’ve been on Beta Blockers as a first-line Med and, while they proved effective, I suffered horrible stomach/bowel issues. Only this week, having attempted to go back to Nebivolol, have I discovered that this is because they effectively weaken my gastric muscles to the extent that food is not pushed through and I have no ability to pass stools without over-straining. This ended up giving me Diverticular Disease on top of the MAV back in September. At that point I had to turn to counselling to help me.

Cruelly, the Migraines actually calmed during this period but, when I had the Endoscopy and Colonoscopy to investigate my bowel pain, the physiological stress from the procedures triggered the MAV once again.

So, since September I lived with daily pressure in my head, of varying degrees. I’m lucky in that the visual vertigo has calmed a lot and my levels of dizziness are manageable. But the pressure can be bad, to the point that it sets in massive fatigue and nausea.

Weather is my big trigger. When the pressure drops, the pressure in my head increases. I’ve watched for food triggers and cut out all alcohol and caffeine, moderating chocolate and cheese.

Today I was told to come off the Beta Blockers as the Gastric problems means I simply can’t tolerate them. I’ve been on 30mg of Nortriptyline for 11 weeks but, sadly, that looks to have raised my heart rate to 95-110. I’ve had an ECG and I’m not at risk but I’m not really sure if I can continue on anti-depressants either. Returning to the Beta Blocker was the solution to the heart rate issue.

I have a fifth neurologist appointment in two weeks to discuss further options and I have a first acupuncture session next week.

I’m scared I’m running out of avenues to explore with medication and that I will have to find a way to live with the daily head pressure. With a young family and a high-pressure job – I’m a Video Games producer working on a big project – this is difficult to deal with.

I’ve been inspired by this community to volunteer my story and, from this point, will seek to join and advise in discussions to help others. Thanks for reading.

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Hi and welcome. Glad you finally bit the bullet and joined in. I’m sure you won’t find it anywhere near as painful as diverticulitis. I once tried that and didn’t like it a bit thank you. Horrendous. My experience with the diverticulitis predates Propranolol by years so wasn’t to blame.

Sorry to hear you cannot continue with that beta blocker. I can quite imagine you never want to see another beta blocker as long as you live but … please to bear in mind beta blickers come in seversl types. Nebivolol is a selective beta blocker, Propranolol (and others) is/are non. Selective. I’m no medic but that might make a difference. You could inquire. Also Propranolol is best researched and has the longest established reputation as a preventative. Also do bear in mind you might also ask about Topiramate or another of that class. It’s much favoured in U/K by neurologist. I’ve been offered it by every medic I’ve seen. Failing that there are other drugs out there. Somewhere on this forum you’ll find a list of 100 but personally I find that ridiculous. Most medics stick with a very few they are familiar with and which have served them well in the past one can only assume.
http://www.nhsgrampian.org/nhsgrampian/GJF_general_new.jsp;jsessionid=EC93B5680DCEC97447BC36F0D7A36B5C?pContentID=4492&p_applic=CCC&pElementID=578&pMenuID=464&p_service=Content.show&

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Thanks for the welcome @Onandon03.

It’s my neurologist that’s basically ruled out all Beta Blockers, though I will discuss further with him in two weeks time because, a few years back, I’m pretty sure I took Propranolol for anxiety for a sustained period without issues. Propranolol was the first med I tried and while I came off it for stomach issues, I’m not sure it had the same impact on my gastric system. So I will go back and discuss this further.

I suggested that Topiramate would be my next go to, but he immediately pulled back on that citing that as having major side effects. Maybe, given my experience with Beta Blockers, he’s simply written that one off. It’s hard to know, today’s advice from him came via email.

I guess I’ll see on the 25th what my options are. In the meantime I’ll hope that the Nortriptyline effect picks up and that my heart rate calms down!

Would be interested to know if anyone had acupuncture and if it helped at all.

Use the forum’s Search facility for acupuncture, there are posts. I’ve not spoken with anybody yet who’s had success with it personally. Two on here who have MAV, not straight migraine (and in certain instances that can make a difference) had it. One had full 10 sessions to zero effect and the other quit after bring so dizzy she needed help to get home at first treatment. I recently discussed with a physio who practises acupuncture. She didn’t think it would help me. She said it stops pain short-term but it is short-term and needs to be kept up twice a week ongoing. And she lost ‘trade’ by telling me that. Good honest lady. Hope the Nortriptyline helps. Btw please do check out the spellings of medical terms you are using/searching. Over time, as you will have discovered as a ‘lurker’, this forum builds an extensive bank of relevant information best accessed using the correct spelling.

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Ah…thanks for the heads up on the spelling. I’ve gone back and corrected (I think). I’ve struggled with spelling Nortriptyline for a while!

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hey! there are other class of antidepressants that can help. Effexor (venlafaxine) is the recommended one. I had head pressure for a long time. Another is to use blue light protector glasses since you work on computer all day, and some supplements. I use magnesium and recently added omega 3 (for the fatigue). Also, occasional ibuprofen does not hurt.

Re acupuncture - I’ve been having that Regularly since the summer- It’s part of the physio sessions I have - not convinced it’s doing any good as my attacks have been getting worse And more frequent- but perhaps I’d have constant symptoms without it- who knows! !

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Could be either the physio or the acupuncture actually making you worse as VRT did me. You’d need to cut one at a time to get a clue although owing to MAV morphing even that’s not conclusive. Proving anything’s so very difficult at times, frustrating.

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Hi Mumbles
I had nausea when I was on IMMEDIATE release Propanolol 3yrs ago when my MAV first started. I am now on 120mg EXTENDED release Propanolol (started at 80mg and worked up) and have not had any issues at all so it might be worth enquiring about the extended release version. In addition I take 150mg extended release Venlafaxine (SNRI) which has drastically reduced the constant dizziness/drunk feeling. The Venlafaxine did not address my head pressure and pain behind my nose but since I have added in the Propanolol 10wks ago, the head pressure has drastically reduced. Hope this helps
Mav

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@mumbles Sorry to hear of your struggles. I’m fairly new on this site but it’s packed with very supportive people and lots of helpful information.

I struggle majorly with head pressure and know that when this ramps up, I’m in for a rocky time i.e. increases of dizziness, vertigo, tinnitus and pins and needles. In the absence of any really useful help from my doctor, ENT consultant and neurologist, I have recently started acupuncture to see if it helps. Realistically, I don’t expect it to cure my VM/PPPD but was praying it might reduce stress and therefore help the head pressure…or that’s the hope! I’ve only had 3 out of my 7 sessions so far and haven’t noticed any significant changes. There have been a few days when I have had a reduction in symptoms, only to be followed with an increase thereafter. Unfortunately, I was having the exact same patterns before treatment so it’s difficult to compare. I’m keeping an open mind but personally, for me, I’m not expecting much. If nothing else, it forces me to take an hour out of my chaotic, panic ridden day and rest for a bit, so that can’t be a bad thing.

Hope this helps.

Regards,
Allyson

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The head pressure is the migraine that’s driving the other symptoms for sure. I see it with myself all the time. Exactly as you do. Have you tried introducing more lifestyle modifications to curb your chaotic, panic ridden day. Might prove a lot cheaper and more effective than paying an acupuncturist for an expensive lie down. Just a thought.

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Very well put Helen.

We get people from all over the world coming here so it’s understandable that users will have varying levels of ability with English but it’s especially important to at least spell medical terms and drugs correctly.

I will put my hand up and say that I’ve spelt Nortriptyline “Noritriptyline” in the past because people often shorten it to “Nori” or they think it’s spelt like “Ami” is which is only partly true. We should shorten it to “Nort”

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