Getting quite afraid and not sure what to do

The last week or so has been sheer hell. I feel as though I’m constantly rocking even with my head still and any head movement makes it much worse. The more active I am the worse it gets. I have constant nausea although I haven’t thrown anything up. This morning I sat through a meeting at work where I felt so groggy I thought I was going to have a stroke. Every time I turned my head it seemed that my head continued to move in that direction after I had stopped. I drove home and slept the entire afternoon, but even now I feel a dull thrumming and tingling in my left temple and I’m still nauseated. The world seems strange and surreal. With only brief respites I have been getting worse and worse since early March and there is no letup in sight. Where is all this leading?

It would take weeks now to get back in to see the neurotologist who pronounced me as “improving” last week (well that’s partly my fault, I thought I was), and I’m not even sure he’s the specialist I want. I am really starting to suspect that I have an aneurysm about to burst or something a lot more sinister than migraine. I’ve had two brain MRIs with contrast yet I’m not sure that truly rules out vascular malformations or aneurysms (or does it?)

Has anyone else with confirmed migraine ever had a pattern of symptoms like this? I really don’t know what to think… emergency would probably not take me as I don’t have any of the classic stroke symptoms, and this has been going on for two months. If this is part of the migraine spectrum I don’t want to panic, but I really need to get this under control and I don’t know where to turn.

Hi Fizzixgal

So sorry to hear you are having a very rough time. Wish I had some incredible advice or something wonderfully comforting to say.I know someone else will come along soon enough with better advice.

Sound like you were improving last week? Focus on that. This crap increased for me 2 months ago and has been coming and going ever since. 2 good days, and then a bunch of crappy ones. It’s been hard to stay positive but we must. Being positive is part of the solution. Negativity only hurts. Easier said than done I know, be we’ve got to focus on the positives. I’m sick and tired of watching movies and tv most of the day while the rest of the world is moving right along.

Were you on meds and then go off since you were feeling better? Sticking to the diet?
Don’t know what you are capable of but, for me going out in the yard and sunshine, or doing some light house work, reading advice books ( sometimes it bothers my head to read) really helps my mood a lot.

Breathe deep, stay strong and positive :slight_smile:

John,

Thanks for the reply! Well there’s nothing I’m not capable of, I just feel like crap doing it and it doesn’t seem to help. I took a 15 mile bike ride on Wed and I’ll probably do it again this evening after dinner. It increases my symptoms like all exercise does, though walking is worse. I do it anyway because I know it is good for me. But I don’t know how long I’ll have the patience to keep doing this. I’m an exercise addict but this is the first year I’m not feeling any benefit from it.

Typing this reply is making my head feel full, as if it was filled with water. I don’t think it’s the computer screen, I think it’s partly my posture: I’m leaning over the desk, kneeling on a chair, and balancing myself on my forearms as I type. But even sitting normally in a chair, doing anything that requires focus and concentration will eventually make me sick.

Another trigger for me is watching anything in motion when I’m standing still, like cars turning while I’m waiting at a light. But watching the surroundings move past me as I’m driving doesn’t affect me, nor do busy patterns or supermarkets (except if I turn my head a lot).

The only meds I’m on for migraine/inner ear issues are propranolol, dyazide, and acyclovir. I haven’t changed a thing in my regimen since about a month ago when I added Migrelief. I am also on the JOH regimen for Meniere’s, well part of it anyway (lemon bioflavonoids, vinpocetine, l-lysine) but I’ve been on that since August/September. Diet is something I have to work on but I’m not sure how. I don’t have the facilities where I live to cook everything from scratch (very tiny cramped kitchen). And I’ve cut just about everything suspicious out of my diet one by one for periods of up to a week, and nothing has made any difference. That’s why I’m starting to suspect it’s something else.

Fizzixgal,

I am very familiar with the cycle you are talking about. When I get as sensitive to head motion as you describe, I stop driving. Frustrates my wife at times because she doesn’t drive which means we get stranded from time to time. When I get myself in a constant state as you describe, it is usually because I am pushing myself. What works for me is to allow myself a lot of rest time. It seems like it is more often than naught that my wife is the one that points out my condition and where the couch is.

I’ve been hanging on this info "All patients are cautioned that migraine symptoms often do not respond quickly to these interventions. Great patience is required of the patient and physician as 6‐8 weeks of diet changes or the full dose of any new medication may be needed before benefits are seen. " mvertigo.org/articles/migraine_jhopkins.pdf

So if you say you cut foods out for a week. They might need a lot more time. Tomorrow will be 2 months for me following this diet pretty strictly. mvertigo.org/articles/migraine.triggers.pdf I know it’s pretty torturous and confusing but maybe worth a try. Something to be proactive about. I’ve never noticed a trigger before and so far it hasn’t helped. :frowning: Although I have felt a bit better the past 2 days. Eventually I will add back foods one at a time looking for a reaction

Yeah, waiting at a traffic light is aggravating for me too.

15 mile bike ride. Wow! I never did that even before MAV. I’ve also read on this forum, that too much exercise is bad. What if you tried a little less exertion?

So has the Migrelief helped? Any chance it made things worse?

Well then I should stick with the Migrelief for a while longer as it’s only been 4 weeks. But the trouble is, things seem to be getting worse. Not in steps, not as if something affected me in a negative way, more like very gradually, as if nothing was touching the symptoms and I had some inexorably progressive disease.

I took a bit shorter bike ride today because I futzed around getting ready and did my usual take this, forget that two-step and wound up having to turn around twice for jacket, then backpack and was up against sunset. But I don’t think the exertion is too much, at least not unless I’ve been overdoing it all my life. As I said, I’m an exercise addict, always have been.

Brian, when you say you stop driving when you get that sensitive to head motion, is it because you have trouble judging distances or seeing straight? Do you really feel unsafe? Maybe I’m fooling myself but I don’t feel at all unsafe driving and I don’t have the least anxiety about it. I don’t get so much dizzy as sick, with nausea and headache if I overdo the head motion. Or to be more exact, I get a very transient dizzy, stirred-up, water sloshing around in my head feeling for a couple of seconds, but the sickness keeps building and doesn’t go away. So I try to limit moving my head when stopped, make every head turn count. When I’m in motion I seem to be fine, I can turn my head all I want and I’m not affected. For that reason my neurotologist compared my condition to MdDS and even said that was sometimes a part of migraine.

Hi Fizzixgal,

I think your progression over the last few weeks/ months is not unusual for MAV in some people and given you’re clear on MRI scans, it’s pretty unlikely to be anything nastier than migraine.

I’ve gone through many periods over the years of symptoms worsening and then reversing again. There’s no reason why it cannot go the other way again.

I really feel for you in the meetings at work feeling miserable. I’m in a similar situ right now. Four weeks at a new job navigating around the challenge of learning a whole pile of new things, new work stations, crappy perfumes, fluorescent lights, new people and the stress of trying to work with a head that feels like a bowling ball most of the time.

Are you on any meds at the moment? Sorry if you mentioned this previously.

Scott

Fizzix,
I was going to ask what Scott already did…the meds you are taking don’t do anything to affect serotonin, which is one of the main components of most preventatives…whether it’s a tricyclic antidepressant, Celexa, Effexor…they all hit serotonin, and in most cases, also norephinephrine. Your meds aren’t tweaking these neurotransmitters, and if that is what you need, you won’t see a benefit with those other meds…
FOr me, they’ve worked well…there are always side effects, and nothing is one hundred percent, but if you start getting more and more anxdious about this condition…it will exacerbate things…so good to get it under control Good luck to you.
Kelley

Head that feels like a bowling ball! Wow Scott that’s a good description. Or like this heavy rock with bungee cords attached. Yes I’ve been reading about your nightmare with the perfume gal. What insensitive louts! But one positive in your case is that you have identifiable triggers so at least the POSSIBILITY of avoiding things that set you off (if other people could just step outside their little worlds for a minute). For me smoke is a big no-no, even the cedar-scented candles I love to burn at Xmas. Some other strong odours too, especially the solvent they use in applying acrylic nails – gaah, I may have to switch hair stylists because of that. But I don’t have any idea what, if anything in particular, is triggering the way I’ve felt the last two months.

Head on a bowling ball – whenever I start feeling that way I can be sure the nausea is going to start to build. That didn’t used to be the case though. I used to have all kinds of weird vestibular sensations, in fact a lot of the same ones I have now, but I could just shrug them off. They didn’t lead to actually feeling sick. I had a few hints of this in November, but it did not last and I was fine all winter (northern hemisphere). Then in March I found a flood in a house I inherited and have been trying to sell, and all hell broke loose with my symptoms. At first I suspected it was due to mould exposure and I actually felt like I had a URI of some kind. That went away but in every other way, it’s been downhill ever since.

Rockyksmom, YES I am not on anything that affects serotonin and that’s by choice. I was on Prozac many years ago and it actually made me feel very slightly like I do today, groggy and drowsy, apt to nod off driving, very dangerous. I actually had to take a stimulant to counteract that effect so that I could function. And when I tried to stop it, I got SSRI withdrawal syndrome so bad it took three tries to finally kick the habit. This was before SSRI withdrawal had hit the popular news and I thought my electric shocks every time I moved my eyes were some weird idiosyncratic reaction. And actually they were, kind of, because Prozac has the longest half life of all SSRIs (well, at that time at least) and is the least likely to cause SSRI withdrawal syndrome. So now I know that I can’t take this class of drugs. The next drug I’ll try is diltiazem (verapamil gives me very bad slow-transit constipation). If that doesn’t help then it might have to be tricyclics or something else centrally acting – but not a SSRI.

Fizzixgal - A year ago I was on the JOH regimen due to a misdiagnosis of meniere’s. Later I was re-diagnosed by a neurologist with migraine variant (MAV). I began taking low dose topamax. However, in addition to some foods, it became evident after examining my JOH supplements that the lemon bioflavanoids were setting me off (the lemon citrus base can trigger migraines) in addition to some of the fillers in other supplements as well. Last month I cut out all oil and rice based supplements only to find that my dizziness was further reduced without an increase in my topamax. For some of us there are odd overlooked triggers. Burd has posted extensively about environmental triggers and the effects of household items such as plastics, appliances, etc. Keep digging …each person may be different in the causality of their illness. Hang in there.
Gail : )

Well that’s a good thought. The thing is in my case, there’s been a gradual progression of symptoms over a couple of months. This weekend has been the worst of all. All it takes now is turning my head from side to side to make me feel very sick, nauseated with a dull headache, sometimes pain in my arms, even chest (no I’ve had a stress test recently, this isn’t cardiac), burning sensations on my scalp or on my neck, just feeling very very bad. I’m completely debilitated right now. I’ve slept for about 3 hours each afternoon and woke up feeling just as terrible. I cannot believe this is due to migraine, and I can’t imagine feeling this badly unless I’m really seriously ill or dying.

I have to go back to my original question, which was, what really can they see with a gadolinium contrast MRI? How sensitive is this imaging modality to vascular malformations or aneurysms that are already causing symptoms? I keep going back to the fact that I’ve been having intermittent symptoms for two years now but continuous and progressive symptoms for two months. I have a hard time understanding that in terms of migraine, allergies, any kind of chronic condition that’s aggravated by external triggers, or really anything but some developing lesion, probably in my brain, that was indolent for a long time and is now suddenly taking off. So a tumour is ruled out, where does that leave me?

Fizzixgal - I’d recommend a consultation with a physical therapist to be checked out for myofacial pain and structural problems with your neck. You could also be tested for biotoxin illness and/or problems with mold - anything is possible or a combination of things is possible (see www.survivingmold.com - my sister-in-law became extremely ill 10 years ago after working in a flooded classroom here in California and had to quit working due to extensive exposure to mold). There are quite a few medical conditions that can kick off and continue MAV-like symptoms even if you do not actually have MAV. Hang in there.
Gail

HI Fizzixgal,
I am sorry for how much you are struggling and I understand how difficult not having conclusive answers are. This whole MAV business seems so inconclusive to me as we all have different symptom complexes, yet we are diagnosed with the same condition. To answer your question, an MRI with contrast can help to better differentiate structures and can provide some information regarding the vasculature of your brain as well as areas of inflammation. I would find it highly unlikely that any of these findings would be the reason for MAV like symptoms but it is a good idea to rule this out to put your mind a bit at ease. This test is very low risk so you might as well go for it.

Best of luck and please keep us posted!

Lisa

Thanks MAVNY – I’ve already had two MRIs with contrast, one in September 2009 and then again a year later to verify that a small pituitary nodule is stable. Both MRIs showed “deep white matter changes” that my current neurotologist says are very typical of migraine, but nothing suggestive of a tumour, vascular malformation, or aneurysm. I was asking how sensitive the test was to get an idea of the certainty with which those possibilities had already been ruled out.

miniandelsa, I looked at that biotoxin site and couldn’t help but think that it’s really far-fetched in my case considering how brief my exposure to the water damaged house has been. I only go over there every week or two, only stay for a few minutes, just enough to inspect the place, and haven’t noticed any ongoing correlation between my symptoms and visits, other than that they started about a week after the flood. Also, I’ve asked every doctor I’ve seen for the last two years whether neck problems could be related to my other symptoms, and they all say no. It’s funny because I do have an upper cervical congenital deformity that the first MRI report mentioned, but according to two neurotologists and a neurosurgeon, it’s completely benign and unrelated to any symptoms I’ve had.

I know it’s so crazy that we can feel so bad, but the MRIs are normal. The good news is that your symptoms are ONLY due to MAV. The bad news is that your symptoms are due to MAV. Difficult to treat, but possible. Keep trying different meds, avoiding triggers, and positive thinking. My coworkers make fun of me for being so optimistic - I feel like I’m successfully fighting migraine, everything else is not so bad.

Ah, Fizzixgal,

The stroke-like feelings, I know them well. One time I was feeling so hideously bad and had numbness spreading down one side of my face and arm and tingling in my fingers that in a Google based panic I looked up stroke symptoms. I found something that said if you can smile and raise your arms it’s not a stroke. Join the dots to get to the part where I stand in front of a mirror, grimacing, with my arms raised up, happy at least that according to someone on the internet I wasn’t having a stroke.

I’ve also experienced what you are, of symptoms getting worse day by day. It’s not just hell on earth it’s very frightening. It’s that mixture of feeling so awful yet continuing to feel worse each day that has had me wondering how it was possible that I not be dying. I’ve experienced this more than once - probably the worst (and most scary) being when I started losing each of my senses over several days. This was also around the first time they thought I had MS so that just added to the fear.

Anyway, the good news is I didn’t die, I don’t have MS (and touch wood never will) and am now doing pretty well (it’s a bit of a struggle at the moment but I have a lot of things happening with my body and mind right now so that’s to be expected).

I understand your concern re the SSRIs given your bad experience with Prozac and note you are considering a tri-cylic. That is what I am on (almost off) - Prothiaden (aka Dothep) and it has worked very well for me.

Vic

Hi Fizz,

I’m very sorry your having a difficult time with the increased rocking. I’ve been there many a times! In a nut shell…please try and get plenty of sleep with little or no disruption in your sleep. Watch your diet (food and drinks). Have you found out what foods or drinks that are Triggers? Try not to skip meals…keep the Stress at a minimum. I don’t know if your on any medication but a small amount of Benzo (Xanex) helps to decrease the rocking motion…it definitely helps for me so if you’ve never tried it you might want to look into it.

I hope you improve soon!

Joe

Joe,

I haven’t been able to identify ANY triggers so far. My symptoms don’t seem correlated to anything external except the seasons – March/April have been my worst months now for two years, and I had the first hint of a problem in May 2009. Seasonal allergies as a trigger? Maybe, though I’ve tested negative for every common allergen. Internal triggers: stress is the big one. And yes, benzos help with the tingling temple/dizzies that come with exercise, some anyway, but not at all with the motion sickness and wooziness that I’ve had almost continuously since March. Generally I avoid using them, since the exercise-induced dizzies are temporary nuisances anyway and they don’t do anything for the really debilitating stuff.

Victoria,

The “strokey” symptoms are the scariest, aren’t they? The first summer I had this ('09), I remember taking a hike once alone that I was sure was going to be my last, because my right leg felt weak the whole time. Thanks for reminding me of that, it’s not as if I’d just developed clear neurological symptoms recently.

— Begin quote from "fizzixgal"

…Brian, when you say you stop driving when you get that sensitive to head motion, is it because you have trouble judging distances or seeing straight? Do you really feel unsafe? Maybe I’m fooling myself but I don’t feel at all unsafe driving and I don’t have the least anxiety about it. I don’t get so much dizzy as sick, with nausea and headache if I overdo the head motion. Or to be more exact, I get a very transient dizzy, stirred-up, water sloshing around in my head feeling for a couple of seconds, but the sickness keeps building and doesn’t go away. So I try to limit moving my head when stopped, make every head turn count. When I’m in motion I seem to be fine, I can turn my head all I want and I’m not affected. For that reason my neurotologist compared my condition to MdDS and even said that was sometimes a part of migraine.

— End quote

It’s because I get disoriented and can’t feel the motion of the car properly. I become extremely dependent on my eyes to navigate the car and can’t look away from the road for the briefest of moments.