Welcome Susie

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Hi
I have recently had a baby 5months ago. About a month ago I started suffering dizziness and was diagnosed with labs. I went to see a balance specialist who disagreed with this and said I had anxiety. I then saw another balance specialist who has said he thinks it is migraine associated vertigo. I have an appointment to see a neurootologist on Monday but currently feel like life is not worth living. Don’t see a way forward.can’t even manage to sleep as anxiety pains in chest are that bad.
Please please please help

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Welcome to mvertigo Susie!

Your message was a little worrying because it sounds like this has really hit you hard and has drained nearly all of your strength. Know that you’re not alone and there are a number of ways to recover and feel MUCH better. There’s loads of people here who understand where you’re at (including me) and have all come out the other side. Anxiety is VERY common with migrainous vertigo.

Can I ask what you’re doing in terms of medication? Have you tried anything for some relief? How about lifestyle modifications to drop the trigger load?

Hang in there!

Scott :slight_smile:

Hi Susie,

So very sorry you are having such a miserable time. It’s no consolation I know but I have been there too. The good news is I have got better. So can you.

Having a baby will no doubt have been a huge upset for your body - hormones all over the place and of course the lack of sleep and all the emotions that go along with having a new little person in your life who is completely dependent on you. A perfect storm to set off migraine, particularly with anxiety as a primary feature.

A neurotologist is exactly the person you need to see if it is migraine so that is a great step forward. You will also find a great deal of support, understanding and information on this board. For me it has been a life saver.

Hang in there!

Vic


EDIT: I had replied to your introductory thread, but in a nutshell - what Scott said. You CAN get better and this forum will be a great resource and comfort to you.

Hi Scott
I am currently taking betahistine, citalopram and diazepam. I have already modified my diet, cut out alcohol, caffeine etc. Have you recovered? If so how?
Susie

Hi victoria
Can I ask , how you recovered?

Ps the neurologist I am seeing on Monday is called dr s surenthiran of Kent does anyone know anything about him

I think several people on this forum have seen that doc - isn’t he one of Prof Luxton’s team?

hang in there Susie

Gabrielle (got back to 80-85% with the help of beta-blockers, vitB, coQ10, Magnesium, giving up caffeine, red wine, limiting other triggers, and doing more exercise)

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Hi Scott
I am currently taking betahistine, citalopram and diazepam. I have already modified my diet, cut out alcohol, caffeine etc. Have you recovered? If so how?
Susie

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Hi Susie – I’m recovered to the point of having a life again but it’s still annoying the shit out of me lately, especially being in a constant head pain cycle with no end in sight.

I was a complete train wreck in late 2003/ early 2004. Anxiety so bad I was once practically crippled lying on the floor dragging myself with my hands. I ached inside and would wake early in the morning with the sort of emotional pain you’d expect to feel from the death of your mother or father. All this from a combo of VN and migraine – the so called Big Bang. I got better on 15 mg and then 10 mg of Cipramil over 4 years. In that period I used tons of valium. Now just 2 mg Paxil and valium AND the biggest one: lifestyle mods. Trigger avoidance etc, etc.

So what I’m wondering is why you are still being torn up by anxiety while on both citalopram and diazepam. Have they made any impact? Very glad you’re seeing Dr S. I’ve only heard good things about him.

Scott 8)

Hi again Susie,

I have been extremely fortunate in having great success with Prothiaden (Dothep). The effects are gradual and it is usually around three months before you can really gauge if the med has had a significant effect. It took me a couple of weeks to ‘settle in’ on this med but most of the side effects were low level and temporary. The real down side has been significant weight gain and loss of libido. To be honest though, given how shitfully sick I was those two side effects were a small price to pay. Others on here have had good results with this med also. I am now weaning myself off Prothiaden and touch wood I am still feeling very well, meaning I must be remission.

Remission is something else to keep in mind. Much like a regular migraine “attack” chronic migraine can pass on its own. This has happened to me many times. You are not doomed to feel this way forever.

I also take Valium as required and it is a lifesaver.

Vic

Dear Scott
Not sure why the anxiety is so bad. Crippled by chest pains constantly.
Susie

Can I also ask the names of the doctors you have all seen?
Susie

welcome. sorry you aren’t feeling well. I have yet to find meds to help me except for the valium that takes the edge off. I couldn’t handle the celexa - i’m a wuss! i have chronic dizziness for the most part off and on every day esp this time of year.

I hope you get some help.

chris

Hi Susie,

I am so sorry to hear how terrible you are feeling. I promise you, it WILL get better. You just need to identify your triggers, and get on the right combination for medicine for you. Unfortunately medication is a trial and error process, and what works for one person isn’t necessarily right for another. As you are in the UK (like me) you will be able to get pizotifen, which I’ve found effective in combination with propranolol (a beta blocker). Be reassured that Dr S is one of the foremost experts in the UK in this field, so you are in very good hands.

Regarding triggers remember they can be obvious ones, like caffeine, red wine, cheese etc., but also they can be things like an irregular sleeping pattern, or not eating at regular intervals. The not eating one is a huge trigger for me, and I have to carry around snacks in my hand bag all the time, as if I ever get really hungry it’s almost guaranteed to set off a migraine.

I know it’s hard to imagine making a recovery, but most people do recover (although I appreciate you might not get that impression on a forum like this, as it tends to attract the few who have not been so lucky). Even those that have not fully recovered generally reach a point where it’s improved a lot and life is manageable again. You will find many people on here holding down full time jobs etc. Last summer I was absolutely terrible, at one point I couldn’t walk unaided, but now I am well enough that someone wouldn’t be able to tell there was something wrong with me unless I told them. Or if they suddenly turned the lights off and I fell over, ha ha.

Good luck with your appointment, and come on here whenever you need to and everyone will give you loads of support. There is something really good about knowing you are not alone. Take care.

The chest pain can be so scary - so many people with panic/anxiety fear a heart attack - but once you’ve been cleared medically and you’re certain that it IS anxiety and not a cardiovascular problem, then anti-anxiety meds plus cognitive and behavioral approaches in combination are usually best. If you haven’t seen a therapist to get some techniques, you might consider that - or do some reading about self-help approaches for dealing with the attacks.

Some cognitive approaches: remind yourself the chest pain WILL go away in a few minutes. It never lasts. Remind yourself it’s anxiety, which is always time-limited; the human body is built to ratchet up and then down again (it’s our fight or flight response), so that’s the way it will inevitably go. Remind yourself that you got through it before, you will again. Remind yourself that it isn’t going to kill you, it’s just going to be unpleasant for awhile.

Some behavioral approaches: deep breathing - and not just during an attack, but on a daily basis. People who do daily relaxation (or meditation, or watching a fish tank, or something similar) for 15-20 minutes where they purposefully slow down/calm down their breathing tend to have less intensity and frequency of attacks. Fresh air - that helps some people in an attack. Get hugged - that helps some people during an attack (but not your baby - you might hug too hard!). Prayer - for people of faith, can be helpful during an attack.

Hi Susie,
I am new also here, but have yet to post my introduction to this board, but my story is similiar to yours in that this all started for me two months after the birth of my first son. I also had incredible chest pains and my anxiety was through the roof. I saw many specialists and they came back with postpartum depression/anxiety. Although the neurotologist and neurologist both thought migraine, but didn’t explain it to me well enough and I didn’t believe migraine could make me feel that horrible so I went with the postpartum depression/anxiety because that’s what the other 3 doctors thought.

How long have you been on the Celexa? It took a good 5-6 weeks for Celexa to take the edge off the anxiety and chest pains I had.

How is your sleep with the new baby? My biggest problem was sleep deprivation making it all so much worse.

Are you nursing? If so, be sure to eat many small meals throughout the day and get the extra calories you need.

all the best,
Anne

Hi Susie

Really sorry you’re having such a tough time, try not to think too far ahead at the moment with this condition until you’ve at least seen a neuro-otologist and have a firm diagnosis from them and a treatment plan. Just focus on getting through one day (or less!) at a time for now, thinking ahead any further than that causes that wave of anxiety to get totally out of control.

In terms of Dr’s, many of the UK members of the board have visited the “National Hospital of Neurology and Neurosurgery” neuro-otology dept in central london, but I think this is just because this is the one that has the biggest reputation rather than because it is better than any other Neuro-otology dept.

As far as Dr Surenthiran goes, I’m not familiar him personally but I did find reference to him in the guardian:

http://www.guardian.co.uk/society/2008/oct/14/health-healthandwellbeing

All sounds pretty positive, just remember to write down all of your questions before you get there as I can guarantee you’ll forget everything you meant to ask otherwise.

Sorry not be more help, but you really do sound like you’ve been referred to the right dept at last, and you’ve stumbled across this board, so hard to believe as it may seem, you’re definitely on the right track.

Let us know how it all goes
Hx

Hi Susie: Welcome to the forum, sorry you are feeling so bad. I am in a little different situation than you but I think the hormone connection is clear. I started about 4 years ago, dizzy, nauseous, head pain, anxiety, etc. After seeing many doctors I finally found a neuro-otolgist who diagnosed my condition as migraine associated vertigo and my trigger was fluctuating hormones at menopause. I never went on any medication but I feel about 85% - 90% better and some days 100% better. But it did take 3-4 years for me for my body’s hormone system to settle down. I think where you are younger and your hormonal upheaval is from pregnancy your body will re-adjust more quickly. For me exercise helps tremondously, yoga is great, eating at regular intervals and regular, restful sleeping habits. Obviously with hormones being a trigger you can’t avoid that … you just have to find out how best to deal with it. I don’t know your situation but my birth control pills to regulate your hormones for a short period of time (6 months or so). I was offered hormone replacement therapy but being a breast cancer survivor I had to stay away from that. Hopefully you will feel better soon and be able to enjoy your little one.
Just finding a definite diagnosis will take any some of the anxiety.

Good luck and keep us updated on your progress.

Joan

Hello Susie

Sorry to hear you’re having such a horrid time. I’m in the uK too and got diagnosed about a year ago (having suffered with wrong diagnoses for years and years). Mine started about a year after having my twins.

I’ve heard good things re. Dr S. too. I’m one of the UK ones who’s a patient at The National, where although they diagnosed me very quickly, they have taken rather longer to treat me successfully!

I find a drug called clonazepam (esp. the branded Rivotril) to be fantastic as a ‘quick fix’ on really bad days, but unfortunately as it’s a benzo and therefore addictive I try and use it sparingly. However, it’s helpful to have something like this prescribed just to enable you to think clearly and calmly and remember how ‘normal’ feels, even it it’s only for a short time, as then you can maake coherent and sensible plans and decisions about how you can deal with this.

In terms of long-term management/prevention, unlike some others here, I found Dothiepin (prothiedin) no help whatsoever, although I lost weight on it! I can’t take betablockers as I’m asthmatic but many many here have found they’ve helped. I’ve just started on amitriptyline 10mg and so far so good.

I’ve cut out caffeine and red wine and really strong cheeses and soy sauce but otherwise couldn’t say I have definite food triggers. The main trigger for me seems to be stress. I also suffer from panic disorder which was really helped with Cognitive Behaviour Therapy (CBT), and now I’ve started CBT for anxiety caused by the dizzies. I try and do regular meditation, physical exercise, get enough sleep (difficult with babies!) and I like reflexology (I find it relaxing - dont really go along with the pseudoscientific theory of it though!).

Hang in there and good luck with Dr S.

Dizzy Izzy x

Hi all
Saw the neurootologist and was put on a special diet and given nortriptyline. Am also still taking the citalopram. Very very up and down at the minute , had trouble sleeping so the gp told me to take a higher dose of nortriptyline , this made the vertigo much worse so have cut back again. Feel lost
Susie

Hi Susie, I just joined the forum around the same time as you. I have been suffering on and off for many years and just got a diagnosis of MAV in Jan. After the birth of my 2nd child 10 years ago i was (incorrectly i think) diagnosed with anxiety and post natal depression. It was tough at the time, very tough. I felt awful everyday. I was on medication and joined a local Post natal depression support group, which was actually a help at the time. Don´t give up- it is worth pursevering with the professionals and seeking 2nd/3rd opinions if you are not happy with a professional and or the meds. I was on Amitriptyline for about 5 years and did get better and it did get easier with the kids as time went on. Have you tried any herbal remedies for sleeping and maybe talk to your doctor about melatonin. Take all the offers of help that you get and just try and stay as positive as you can…things will get better in time. You can win this battle…!!
Love
Michaela

Hi Susie,
I see Doctor Surenthiran and he is patient kind and gentle.
I hope you feel a little less lost after seeing him,and he can help you on your path to recovery.
Best
Penny