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Don't want to feel alone anymore

#1

Hi, I am nervous about sharing. I don’t usually join forums, but I found this one this morning and I can’t stop reading. I see myself in everyone here. I am simultaneously excited and terrified about that fact.

I have been dealing with many of the same symptoms every single day for about 2 years (although I think I had episodic symptoms on and off for about 10 years, only becoming chronic, suddenly in July 2017).

I am 51 with a history of classic migraines since I was a teen. In July 2017, I experienced a sudden moment of dizziness in a crowed lobby of a theater. No known reason, I couldn’t really stand, or walk or drive without severe spinning. I felt like I was dying, and that there was something seriously wrong with me. Many, many, many tests and emergency room visits later – I have no diagnosis other than suspected MAV. BUT, there were a few incidental finds along the way 1) My left carotid artery was 80% blocked. I had surgery March 2018, hoping my symptoms would improve, but they did not. 2) I have a very tiny, stable aneurysm in my right cavernous carotid artery leading into my brain that I am told not to worry about (easier said than done). Neither of these incidental finds is the cause of my symptoms, according to the Drs I have seen. I was originally told I had Cerebral Pseudotumor, but that diagnosis was dismissed after a normal lumbar puncture with normal CSF pressure. I have seen 3 neurologists, 2 neurosurgeons, 2 neuro -ophthalmologists, an ENT, Vestibular Therapists, and other Dr. s dealing with my vascular issues. They all now say I have health anxiety and MAV, most likely triggered with onset of menopause.

It is hard for me to work (I am a teacher and on my feet all day), it is hard for me to drive, I can no longer fly without major symptoms leading to panic attacks. I feel like my life is over! I am too young to feel this old. I don’t know if anyone has read this far, or what I am looking for by even posting this. I guess I just don’t want to feel so crazy all the time, and know that I am not alone!

Here is a list of my symptoms:
Lightheaded/Dizzy every single moment of every day
Pins and needles in hands and feet
Heart palpitations
Feel like I have muscle weakness, but tests say otherwise
Pain/heaviness in my legs (feels like one leg is shorter than the other – weird I know)
Muscular fasciculations all over my body, but mostly in lower legs
Feel like I am floating, or on a boat, constantly
Nausea
Neck pain
Headaches
Fatigue
Joint pain (mostly hips and knees)
Pressure/Fullness in both ears
Occasional tinnitus mostly in left ear
Blurry vision, after images, ocular auras, floaters, feel like eyes are being pushed out of my head

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#2

You are not crazy and you are not alone. You have just discovered a worldwide family of folks JUST LIKE YOU! We are so sorry you’re suffering but glad you found us.

Anxiety and MAV are comorbid. Please read our wikis. And then seriously consider the lifestyle and diet changes. For many of us meds are key.

You can and will feel better. It might take a lot of trial and error and it will take persistence but you can get there.

Welcome. :heart:

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#3

Hi, and please know you are so very welcome. There, you aren’t allowed any more. There’s loads of us, worldwide, and (I know I’m biased) but all the nicest sufferers are on here. So plessed you were brave enough to join and post. I felt much like you twelve months ago. I never do FB or any straight social media at all. Just this forum and for very similar reasons to you. MAV with most women follows various patterns which could easily be attributed to hormones and yours is typical, and very much like mine. I’ve had MAV for fifteen years although unbeknown to me until fairly recently it started in my youth, went away and came back. Consultants often say they see more women of middle age with MAV than any other group. All your symptoms seem pretty typical.

Visual vertigo where the irritated brain gets overwhelmed I would suspect. Same often happens to MAVers in grocery stores.

If you are still coping with work and MAV you can be proud of yourself because it’s very challenging. If you are feeling the need to start preventatives you’ll find alot of support on here to do so but if you just want to read/chat, that’s good too

Rest assured you aren’t alone. Far from it. You are most definitely NOT Crazy. MAV is little recognised, little understood but oh so very real. I think it’s safe for me to say that after fifteen years if living with The Beast! Helen

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#4

Hi hun,

You are certainly not alone and probable have just done the best thing you can right now - joined this forum! It is full of lovely and helpful people that are going through the same things so I am sure you will find comfort and strength within this group to help you, I know I did.

Have you tried many meds for MAV? Do you follow the migraine diet of any kind? I know its a long shot and I dont think someone with MAV will ever be totally free of the beast but there are lots of success stories online and if you read on this forum you will find lots of postive posts from people who have being in the same situation. Im no doctor but I do think with the right treatment you will make significant positive steps towards recovery.
I wish you well :heartpulse:
Kirsty x

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#5

Thank you, I appreciate the response. I have been doing a lot of trial and error when it comes to lifestyle and diet. Just waiting to hit on the right combination. I am feeling like the anxiety needs to really be tamed first, since it seems to drive everything else. I can’t sleep, I am constantly worried that they missed something more serious and life threatening. Depression has set in pretty hard too.

#6

Welcome to the gang Sheilajane!

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#7

Thanks for responding.

I have tried many meds, but not really specifically for MAV. Drs have wanted to rule out everything else before giving me the MAV diagnosis (heart, lungs, vascular, etc). And with the incidental finds along the way, I keep getting side tracked from treatment for MAV which has been my major complaint. I guess I should feel lucky that the MAV symptoms led me to find the other things, but I still need the MAV resolved!

Meds I have tried for various reasons include: amitryptline, topomax, dopamax, xanax, wellbutron, prozac, lexapro, fiorocet, other types of benzos and muscle relaxers, zofran, meclizine, omeprazole, ( I am sure I am not spelling any of these right! lol). Oh and the latest is adderall for some reason.

In terms of diet, I have done the LEAP/MRT testing and cut out those foods for about 6 months now - now real change other than improved digestive issues. It is hard to find “triggers” since my symptoms are CONSTANT, I have not a break for a moment in two years.

#8

Thanks, I am really sad and frustrated and scared that I will have to live like this forever. I know I need help and support. I am just not usually the type of person who asks for help from anyone, let alone strangers online. But I know I need to do something different to experience a different outcome.

#9

Hey there. You’re definitely not crazy and not alone either. A lot of those symptoms are familiar to me and to others on this forum. The thing about feeling one leg is shorter than the other happened to me once, so that doesn’t sound odd at all. If I’m having a really bad attack, everything can feel very warped.

I’m glad that you found us and had the courage to join up. It’s much better than joining Facebook groups about MAV. Share as much as you feel you can, but please hang around. There is a lot to be gained from being with a group of people who understand what you’re going through.

I hope that you can find some relief!

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#10

Hi,
No problem, I hope this site gives you some clarity and helps you with coping mechanisms, a few months ago I was feeling exactly like you - well in fact through out my years living with MAV since I was 18, I am not 27 and have finally found Amitryptyline to be my saving grace, that and the migraine diet, and I also have botox every 12 weeks.

It seems you have tried quite a few drugs they would consider for MAV already but please dont give up yet! Do you see a neurologist regularly? I think preventatives are key and its finding the right one unfortunately which means we are our own guinea pigs. I am certain you will gain some relief with a drug eventually. I have tried alot of drugs too which hadnt worked up until now, 9 years of suffering and then it became chronic so I was willing to try almost anything. I do the migraine diet and have just started to try the Keto diet. I certainly think its a huge help and goes hand in hand with the good preventative. I can finally work out again! I couldn’t even get to the toilet before xmas so I urge you not to give up.

xx

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#11

Thanks for the response. I keep reading from lots of people here about amitriptyline. I think it was one the first drugs prescribed to me early on. But it was given to me by my gastro dr who was working with me on GERD/IBS. I did not like how I was feeling on it, but to be honest, I dont’ think I really tired it for more than two weeks. I am wondering if I should try again.

I am having trouble getting established with a good neuro - the one I had just left the network and I have been told I need to start over with someone new. That is what I am working on this morning, calling around trying to get a new patient appt that is not 6 months away! The diet changes I have made (cut out most diary, nightshades, peanuts, wheat, etc) has helped with stomach issues, but not with MAV symptoms. Just want some break from the dizzy/nausea mostly. They are the most frustrating part of all this.

Can I ask, what specific migraine diet do you follow? There are some many suggestions that are contradictory (ie cut all caffeine vs. have a little caffeine for example.) Is there a specific book to follow?

#12

I am sorry you’re suffering. I follow the ‘‘Heal your headache’’ diet, it is pretty strict but I have seen significant results from it. I know a lot of people from the forum swear by the 6c’s diet and Helen @Onandon03 follows another diet specifically for Migraines. These are accessible on google. The particular one I follow is also in book format, available on eBay.

Can I ask whereabouts in the UK are you located? Would it be possible for you to pay privately for the first consultation, this will speed up the process and then a lot of Neuros will then see you on the NHS thereafter, just a suggestion as I know you are desperate. I know a very good Neuro if you are in the South east region. I can PM you details if you would like?

From my own experience, limiting caffeine, MSG and chocolate have helped significantly. I have max 3 cups of decaf tea per day. You can find lots of diets on this forum to look over but ultimately cutting out the 6C’s will be a great start. I think they are listed on here and also google search will bring them up.

I hope this helps you… :slight_smile:

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#13

Thanks, I ordered the book. I look forward to reading it and getting started. I am actually in the US, not the UK. Our healthcare systems totally sucks!

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#14

MAV feels like something ominous and serious but it’s not.

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#15

Oh really! Thats rubbish! I am sorry to hear that but I am sure someone may be able to recommend a good neuro in the us. Dr Hain is mentioned on here alot, although I am not sure where he is based or familiar with him. I wish you well in your search for meds and diet.
Just know that you will get better! X

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#16

Hi @sheilajane, I am both in the US and on amitriptyline. Not sure what part of the country you are in but there are a few specialists that really stand out in literature.
Dr Carol Foster in Denver, Dr Timothy Hain in Chicago and Dr Goebel in St Louis.
I am huge proponent of amitriptyline and have been on it now at the recommended dose of 50mg for 3 months. Changed my life! It was not easy in the beginning but was not any harder for me to tolerate than any other really bad VM day. Hope you find relief soon!

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#17

If I were you I would, and start at a really low dose and try to get used to it. As you know many of these drugs will make you feel a bit off or not your normal self. But if you can beat the vicious migraine cycle and recover, then it may be worth it. It’s hard work, you need to stay on it for 2-3 months to know if it’s really working, maybe even longer for things like beta-blockers / calcium channel blockers.

I’ve made it a point to NOT fail any meds that I try, unless my blood work says I need to stop, or insomnia develops, or I just feel cognitively way to off. And yes, all three of those things have happened after 2-3 months in. But I realized that each one that failed me was starting to work, I just couldn’t tolerate the side effects. And that gave me confidence to keep trying medications, hoping for one that is tolerable and one I could stick it out with. Good luck!

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#18

Hi, just checking back in. I finally got to another neuro who put me on amitriptyline 10 mg. I have been on it for only 6 days, but I now feel WAY worse. Very, very dizzy, increased headaches, chest pain, nausea, basically feel like I have a terrible hangover. I know I should stick it out, but it is really hard to see this getting better. I can’t imagine trying this for 2-3 months? There has to be something else that does not have side effects worse than the symptoms I am trying to get rid of. So frustrating.

#19

Hi sheilajane,

Maybe you could ask for Nortriptyline? It is the sister drug to Ami and supposedly has less side effects. I am currently on 40 mg of Nortriptyline and when I first started it, it made my symptoms a little worse for about a week then things came down again. It also happened with each increase. I’m actually on my second day taking 40 and my symptoms are a little bit more heightened. It is normal for this to happen when you start a med. If the side effects are really intolerable though you can definitely ask for Nortriptyline which may be better for you.

#20

Shoot, sorry to hear that. I would try to go down to 5mg or even less and see if you can get used to that for another week. I had a slight increase in dizziness for a few days but no increase in headaches. It may just take some getting used to at a lower dose.

Another option to get started on is the Cefaly device, you can google it or ask your Neurologist about it. I’ve only been on it a couple weeks but I really think its making a dent in the head pressure symptoms quickly.