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Not sure whether this is a relapse or meds stopped working


#1

Hello I’m currently on 1.5 of piz. I have noticed progress on this meds but is has been very slow and I’m tapering up as I’m mega sensative to meds.i felt my daily dizziness was the same but I wasn’t getting these kinds vertigo attacks I was getting before so felt things were more even. I was driving agen and felt quite positive. Then I eat a yoghurt which triggered of major vertigo. This was a few weeks ago. Since then light sensativity has come back quite bad, I’m feeling sick every day, major off balance and just extremely dizzy. Is this a relapse or have the meds just stopped working for me?im aware I need to increase but I’m just waiting for symptoms to calm down abit. I feel so down and scared that ain’t progress I made has gone and won’t come back. I’m nowhere near living a normal life and feel so much worse at the moment. This vm scares the life out of me.


#2

Hi Veena. Oh dear, pity about the yoghurt still I suspect if it hadn’t been the yoghurt it would have been something else. Personally I wouldn’t allow myself to think the drugs have stopped working. It’s probably a relapse because you haven’t reached a high enough dose/or been on Pizotifen longbenough to raise your tolerance threshold as yet. Besides relapses happen anyway. Hopefully eventually they space out to leave longer symptom-free periods inbetween. I’ve been in meds for years but was consistently much better following a dose increase just short of two years ago, and despite that, mid January I had my first major attack in over three years from which I’m still recovering but no way do I accept it’s the drugs not working. It was just too many triggers pushed their ability to control my symptoms over the threshold of tolerance. It’s frustrating. It gets you down but it’ll mend. My recent relapse wasn’t as severe as they were pre-medication but still kept me in bed for nine days in total. Now just about a month further on, I’m virtually back to where I was before it hit, and in some little ways I feel it’s actually settled to a better place than it was before. Only exception at present vertigo of BPPV type every morning on sitting up in bed! A symptom from way back I’d thought gone ‘for ever’. Unfortunately ‘for ever’ is a long time! As the Alexander Technique people always say nothing can improve without change. Chin up Veena. Just plod on and keep taking the pills. Glad you’ve found a tolerable drug at last. You’ve had long haul. Helen


#3

Thank you Helen.I was planning o going back to work but this has really made me change my mind on things. I just feel so deflated at the moment. I’m getting dizzy a lot at night these days too, Anxiety is off the charts. I really felt I was doing well.i guess that’s the nature of this illness. It can strike at any time.


#4

Bit too early days for return to work maybe. I know you’ve had this years like me. Sure it takes longer tomrecover the longer you’ve had it untreated. Sure I’ve read @sputnik2 said her consultant told her that quite recently. Yep, it’s upsetting and frustrating but we have to keep reminding ourselves. We are getting there. Helen


#5

Hi. So sorry you are suffering and I can relate. I am not working at the moment as the vertigo is horrible and can come from nowhere. I have got other health conditions but I have to be careful with yoghurt as it is high in calcium and I have parathyroid disease and waiting surgery. I am very limited with what I can eat as I have UC as well! I suggest getting blood tests to rule out anything that might be making you worse. The dizziness and vertigo freaks me out as well and if I was told I wouldn’t have another attack again I would be so happy!


#6

What is UC? I’m sorry your suffering too. Are you on any meds?


#7

Try the Heal Your Headache diet for four months. The whole book is a worthwhile read.


#8

Ulcerative colitis =UC


#9

I am following this. But I do have days when I binge eat all my trigger foods! I know it’s bad


#10

Hi Veenaj84. UC is Ulcerative Colitis a gut problem, an autoimmune condition. I am on a low dose of propranolol but take riboflavin 5 phosphate which is the active form of B2 and magnesium. Have had migraines and vertigo for years, would be wonderful if the vertigo left me for good!R.


#11

I’m sorry. My brother has the same condition and suffers a lot with it.


#12

Hi. I know a few people who have it also. Maybe its all linked?Take care.R.


#13

I agree that it could be linked. There is a resurrected thread on how many mav’ers have ibs/gut issues going at the moment. All respondents seem to. have issues.

Veena, I know how you feel. I’m on two and a half mg of Pizotifen and it is up and down. Probably in the fifty percents last week with a lot of dizziness, didn’t feel able to venture out but feeling good today at around mid seventies, no consistency, so I’m unsure if Pizotifen is working that well. I find the lack of consistency in how I feel particularly frustrating, it makes it so hard to plan or accept invites, be sure you can make an appointment etc.

You are doing well driving. I had to give that up a few years back and had to stop using public transport last year which really impacts my life and being able to visit family and friends. Hope things improve for you. I’m just trying to appreciate the good days and parts of days when they occur.


#14

But then you also know it’s a trigger induced relapse rather than med failure.


#15

I think it’s this lack of consistency more than anything that makes people think the meds aren’t working or have stopped working, that, and every apparent breakthrough/relapse however I think it’s the Nature of The Beast. It’s so ‘up and down’ which gets depressing because you don’t feel any progress has been made. I’ve thought for some time MAV tends to linger on so long annual reviews would seem appropriate. I remember Dr S’s office stating on average people could expect to be 70% better after nine months (of treatment). In my case I’ve seen huge improvement this year, aside from my first major relapse since meds, and I’m not far off two years on the effective upped dose of Propranolol. A long wait … a very long wait in my case but I’m glad I didn’t throw the baby out with the bathwater. If it gets you there in the end … good. Helen


#16

HYH has a really good take on the ups and downs. Think of it as stacking up triggers. Some days the triggers are lower and stay below the threshold. Some days they are way above. I think of it like being chained to the bottom of a pool. If I’m careful, I can keep the water level lower than my head. But sometimes it rains and I go under.


#17

When people ask me how I’m doing on pizatofin I really don’t know how to answer, coz it’s literally so up and down. Some days I have felt it’s working other days I’m sure I feel worse. But I really don’t know.the only constistang thing is I’m driving every day now. I really don’t know if pizatofin alone can heal this for me. But I have had this 7 years and chronic 3 years, so it may take more time for my brain then heal. I still have headaches every day. I’m tired 24/7 and my eyes feel unfocused. I’m so unsure of how much it’s helping me. Since I have increased I have felt awful. My kids are home for half term and my anxiety is through the roof!