The wobbles!

Hi there everyone.

Does anyone get frequent (many times a day) wobbles ie., not a spin but everything wobbles from side to side and back and forth? I then often get a headache after it.

Also (a weird one) for past few months everything I eat and smell tastes/smells of fish! Its not like I have changed any medication, sill not plucked up courage to take topiramate. Its now affecting my appetite (not a bad thing, need to lose weight). Its exactly the same fishy smell whatever smell it should be. Hot food is worse even simple stuff like toast smells and tastes like fish. Anyone else had this? Have googled till I’m blue in face but come up with nothing.

Any thoughts would be appreciated.

Angela

hmmm never heard of the fish one but that is not good!!!

why won’t you try the topamax- what do you have to lose at this point? are you on anything right now? what other meds have u tried?

Because I am a wimp Sarah!! I am still on pizotifen even though neurologist said I could take both. That was back in April and I have had every excuse under the sun not to start them. Went to my gp and said I daren’t try topiramate because of the low mood thing as I am already at lowest point and asked to try propranolol. He said do as your told and take the topiramate, so I didn’t I reduced pizotifen to 1mg and I just seem to have got worse and worse. Was Pizotifen working afterall? Every night I have a topiramate in my hand to take and chicken out. I could shake myself at times. I am just scared of extra dizziness I suppose. I am back at work and don’t want to be off. Live alone now and it scares me if I get really bad what do I do?

Got some counselling on Thursday so hopefully someone could help me with this vicious circle I have put myself in. Do you take topiramate?

Angela, was wondering how you were doing. Oh no, about the topiramate! I hope you pluck up the courage to take it as it might be your wonder drug. It seems to help a lot of people. I can see why you would be nervous but like Sarah says you don’t have a lot to lose if you feel so bad. I have been thinking of asking to try it myself as I feel like I have gone backwards a bit recently. How do you cope with working and feeling so dizzy? Do you work full time? Really well done for carrying on so bravely x

I had to give up my job as a teacher but have part time job working in I t support at a college. I help out the students and answer a few emails. It’s very easy and my employers have been fantastic in allowing me to ease into work very slowly. Taken a year to work up to 4 hours a day. Although am not doing what trained hard for at least I feel a little bit more normal in going out to work each day. I can leave whenever I feel too ill. Sorry you feel your dizziness have worsened recently. It’s so frustrating though isn’t it not knowing why we go back a stage if nothing else has changed. I will do topiramate if you do :slight_smile: I can’t believe what a wimp I can be about medications.

Angela
You are definitely not a wimp! Please don’t think that. You have been sensible to change from teaching to a position where you can duck out of things if neeeded - a MAV survival strategy!

Starting Topiramate is a BIG step. I put it off for well over a year (eighteen months) and tried other meds as I was terrified of possible side-effects!! I learned so much about MAV during that time and had so much encouragement from forum members I know thinking “if only I taken Topa earlier” is pointless. We start it when we are ready - when our minds and body are strong enough to begin the trial. You will too.

As to the fishy taste/smell. Suggest talking to your GP. Could be a number of things, eg reflux/thyroid/heightened migraine symptom?

Barb

honestly try not to be afraid of it- just because you can get awful side effects from it doesn’t mean that you will!!! i did try it for about a month at 25 mg and it just made me worse but it has helped a lot of people on here big time. good for you for working i think that is wonderful!!!

Angela,

Just wanted to see if you are smelling the fish smell in one nostril or in both. Push on one side of your nostril and sniff and then the other to test if it is unilateral.

If you find your sense of smell is off in only one side, do a search for a rare condition called Phantosmia. It can be associated with migraines, especially in women. (Phantosmia can also be found bilaterally, but, it is my understanding it is more common in only one nostril.)

"In 2011 Coleman, Grosberg and Robbins did a case study on patients with olfactory hallucinations and other primary headache disorders. In their 30 months long study, the prevalence rates for Phantosmia turned out to be a low as 0.66%.

In their findings, it was observed that a typical hallucination period was of 5–60 minutes, occurred either before or with the onset of head pain, and typically consisted of an unpleasant odor. It was also noted that Phantosmia occurs most commonly among women having a migraine complaint.[30] In their study, prophylactic therapy for headaches helped cure Phantosmia in most of the patients.

This finding is consistent with the findings of Schreiber and Calvert in 1986 which also mentioned the olfactory hallucinations before the occurrence of a migraine attack in four of their subjects.[31]"

en.wikipedia.org/wiki/Phantosmia

Thanks for your replies everyone. Had odd day yesterday had huge dizzy attack when at work and had to come home, took stemitil (first one in months). I have definitely got worse since I started to reduce the pizotifen so last night I upped it back to the 1.5 mg. Also the fish smell/taste coincides with my reducing the pizotifen, so Kennedy Lane perhaps this is a migraine symptom afterall. It is bilateral I think. I will test each nostril the next time I smell a cooked meal. How would you account for the taste, do you reckon that it is related too. Will look at your link, thanks.

I get the wobbles about 3-4 times everyday, if not more… that’s on top of the usual shaking, rocking vision etc… Wobbles are always a bit of surprise! I feel like the ground or table, or whatever suddenly gives way and buckles and bubbles… wobbles!

Angela,
Sorry, but I guess I didn’t read your initial post carefully enough. If you are getting the bad smells only when you’re smelling other actual scents, then you should look into Parosmia. I’m not sure if there is any link between that disorder and migraines. There may be, but I don’t know off the top of my head.

People with Phantosmia can get phantom smells that are NOT a misinterpretation of another actual smell. In other words, a Phantosmia episode may occur without regard to the presence of any other odor.Triggers usually include a strong sniff or sneeze (quick passage of air through the nostrils), a cold, lack of sleep, or for no known reason at all. In some people, exposure to strong odors (like bacon cooking) can trigger a Phantosmia episode.

Many folks with Phantosmia will report food tastes like whatever they smell since there is a strong link between the two senses.

By the way, did you suffer recently from an upper respiratory infection or environmental (seasonal) allergies?

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Thanks for your replies everyone. Had odd day yesterday had huge dizzy attack when at work and had to come home, took stemitil (first one in months). I have definitely got worse since I started to reduce the pizotifen so last night I upped it back to the 1.5 mg. Also the fish smell/taste coincides with my reducing the pizotifen, so Kennedy Lane perhaps this is a migraine symptom afterall. It is bilateral I think. I will test each nostril the next time I smell a cooked meal. How would you account for the taste, do you reckon that it is related too. Will look at your link, thanks.

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