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Looking for some help!

#1

I’ve been battling dizziness issues for about 10 years now. Around that time I was diagnosed a hypo-thyroid and dizziness was my #1 hypo symptom. We got my meds optimal and the dizzies kept coming back. Good stretch followed by a bad stretch. Needless to say I’m in the middle of a bad stretch. About 3 years ago a neuro finally diagnosed me with Vestibular Migraines. My GP had said she thought my issues were migraine related but I did not believe her. My head was not hurting, how could sights and sounds cause migraines? Started researching what the GP said and everything suddenly made sense. He put me on Topamax and that immediately made things 20 times worse! Gave up on that and he switched one of my blood pressure meds to Propranolol, which I think seemed to help. Since then I’ve tried to deal with it the best I can. Try to avoid triggers, and try not to get too freaked out when the dizzies set in. Not knowing what was happening was half the battle and now that I knew it was a migraine and not a stroke or heart attack and was easier to deal with.

However, I feel like this is stealing too much of my life right now. I’ve asked the Dr. to give me another med to try and she has given me Zoloft. Told me to start with 25 mg the first week and then bump up to 50 mg the second week. Said I could stay there if that seemed to help or go even higher if need be. She knows I am very med sensitive and told me the 25 mg is a small dose that would even be given to an 8 year old. She did warn me that symptoms might ramp up in the beginning when I start to take it.

So Saturday I took my first 25 mg dose and a few hours later I was having horrible diarrhea. Like barely make it to the bathroom diarrhea. I’m also still on an antibiotic for a UTI that messes with my stomach too so I decided to wait to take any more of the Zoloft until I’m done with my antibiotic.

So I’m trying to work full time while battling this disorder, but yesterday I was so dizzy that my husband had to come pick me up and take me home an hour after I got to work.

I’m thinking of taking some vacation days next Mon/Tue since I plan to start my Zoloft again on Saturday and I’m anticipating a few rough days. I contemplated breaking the pill in half and starting at 12.5 mg and then raising by 12.5 mg each week but will that just make me have worse symptoms each week? Am I better off just jumping in with the 25 mg?

Any success stories from any of you all on Zoloft is greatly appreciated, or even non-success stories if you have any experience.

Also wanted to add that I had my last Diet Coke on Feb 1 so probably going through some Aspertame withdrawals too as I have a pretty bad addiction going on. I had quit drinking it before for like 35 days to see if it helped with the dizziness, and it did not. But now I’m going off long term to see if that helps.

Thanks!

#4

Hi, and welcome. Sorry to hear of your long and ongoing battle with MAV, There’s quite a few people here with similar stories. I must make clear I’m not a medic just another person with MAV. Cannot really help you with a Zoloft success story. You may find some info via the Search facility on here. Only thing I would say is it’s not one of the more commonly prescribed drugs for MAV as far as I’m aware. GPs usually warn you could be worse for several weeks at the beginning but obviously whether able to continue depends on exact side effects. Some being more tolerable than others. I understand it’s notorious for the symptoms you describe as are many drugs of its class although it must be said most drugs do have side effects. If you intend to try it again you do really need to go low and slow. MAVers notoriously med sensitive and commonly have to quarter tablets and even known to open capsules and count beads when tirating. Intervals between increases also need extending. Where Doc. Says days maybe read weeks, for weekly may be read monthly. Takes much longer but gives a chance of getting there in the end rather than quitting. Taking time out from work whilst titrating is best idea as you’ve already realised.

May I ask are you still on Propranolol and if so what dose. Propranolol is well known as being effective for MAV. Could be worth adjusting the dose if possible. Personally I’ve had success with Propranolol but I found you do need an effectively high enough dose, and time. With Propranolol rather alot of time. Amitriptyline is another trusted drug used and that does tend to work much quicker. There are of course others.

Alternatives are worth investigating and maybe worth discussing with GP.

You already seem pretty much au fait with MAV treatment from your own research, and quitting smoking and the Coke. Have you checked out caffeine reduction and a Migraine Diet. Worth a look. Pretty of info under the Wiki/Welcome Sections and you’ll find threads on most topics under the Search facility. Keep searching. You’ll get there! Helen

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#5

Everything Helen said is true. You might seriously consider other meds. Amitriptyline, Noritriptyline, Verapimil and Venlafaxine are very popular here.

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#6

I am still on the Propranolol, Currently taking 2 qty 60 mg XR , so 120 mg daily. I never was a smoker but giving up the Diet Coke was a tough one for me. I’m still drinking tea, but I will try to wean off the caffeine at some point. I’ve tried the Heal your Headache Migraine diet in the past, but did not find any relief. Looking to possibly try it again but wow I don’t know what I will be able to eat!

#7

I’m going through my GP for the additional meds as its hard to get into my neuro and his office rubbed me the wrong way. I was leaning toward one of the anti-depressants as this seems to be weighing heavily on me these days and I’m a lot more down. She might be open to suggestions for the Ami or Nori but I will go ahead and give this one a shot first. To be honest I’ve been reluctant to try any other meds after seeing what the Topamax did to me in the beginning.

#8

Topomax destroyed me. Others do great. The thing is, migraine variant disorders are very unique to each person. No one med works for everyone. Please spend some time on our wikis and look at the various big med polls. Print this stuff out and give it to your caregivers. I’m on neurologist number 2 (3 if you count the neuro-ophthalmologist). Even my current neurology practice tried to cut me loose because vestibular issues aren’t in their specialty area. I refused to leave and instead educated my neurologist. We made plans together and tried them out. I’m on Effexor/Venlafaxine. It’s my third med trial and I’m doing well, though it took many months to get here. All meds make you worse at first. The question is more how do you feel in a month? This is a long term deal and lot like trying to recover from a closed head trauma. It takes a lot of time and patience and internal fortitude to just keep trying different things until you find a livable level.

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#9

Well, Gosh. They did rather throw you in the Deep End putting you on Topamax first. I’d love to know What percentage of people do find it tolerable. Very very low I’d imagine, Sorry about that … very off putting for sure. Everybody has to start somewhere but . … The only thing to say about antidepressants taken for MAV is the doses as so low, compared to doses for depression, they aren’t supposed to have any affect on mood anyway. Best cure for depression following MAV is to reduce the MAV symptoms. Works a treat that does.

Personally although I tried to avoid it, I’ve really cut back on caffeine. I’m a tea drinker like you and been down to one caffeinated and two decaff teas per day, and that’s really helped me. Even my Other Half commented on it so it must be true. Dietwise I’ve a few triggers, long standing mostly chocolate, red wine etc, the ‘usual’ I never touch, ham/bacon and salty things recently too but less caffeine did more.

120mg Propranolol is halfway up migraine reduction scale of 80-160mg. From my experience if GP would allow you to go to 160mg, you should see great improvement. Of course you may have countraindicators against doing that.

Shouldn’t be problem once you’ve got diagnosis and had a good read of Dr Hain’s flowchart. Providing your GP is amiable and open to suggestion. Some are. Most I’ve found aren’t. Helen

#10

hey, I did not have a great experience with zoloft, mainly the insomnia and kind of ramped my anxiety… BUT, what I wanted to say is that it works for many people to control the dizziness and headaches, AND it is relatively easy to wean off. So I would stay on 25 mg for a little bit, or start with half the pill and go slowly. Just to give you an example, I titrated to my current dose of venlafaxine over 6 months. As Helen and Emily had written, this is a long time thing (and you know it because you’ve been dizzy for a few years now), so have to be patient with med trials. Good luck! PS. The diarrhea will pass, it only lasts like 2 days.

#11

Zoloft helps to a certain extent. I was on it for 6 months at 25mg. But Effexor which i am on currently is far superior in terms of migraine relief !

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#12

OK, my dizziness has always come and gone Even during a bad stretch I can be functional, typically staying at work but exhausted from fighting the dizzies all day by the time I get home. This week was worse than normal. My husband had to come and get me on Monday and almost again on Thursday. I took off Friday and started my 12.5 of Zoloft and took another 12.5 again today. And now I am so dizzy I cannot leave the house, and struggle even walking around my house. How long is this supposed to last? I really can’t live this way and I definitely can’t work this way! I’m torn between taking 25 of Zoloft tomorrow or giving up on it altogether. HELP!

#13

First thing I want to say to you is please stop panicking. Deep breaths, whatever you need to do but keep telling yourself this will pass. Percentage wise as part In your whole lifespan, this is but a moment in time. I imagine your body is adjusting to the meds still. I was initially prescribed Escitalopram another drug of same class as Zoloft, and my doctor warned me to expect to feel worse for anything up to three weeks before I’d start feeling better. One of the commonest side effects of Escitalopram is dizziness which in case of us MAVers means increased dizziness over what you had before. It’s strange how many drugs used to treat all manner of different conditions can seem to cause the very condition they are designed to treat. I’ve read a credible explanation of the reasons behind that somewhere but it’s irrelevant here.

MAV takes alot of getting your head around when it’s new to you. Takes a while to work out what you are dealing with. It is a ‘variant balance disorder’ and as balance is controlled by the brain can really make you feel queer. Symptoms morph constantly. VRT told me to ‘expect anything to happen’ balance-wise and she wasn’t far wrong, if you are very med sensitive could be you need to take time out to adjust to the drugs, weeks off work rather than a day and make other lifestyle changes too to give the drugs a chance. There is always a chance you aren’t going to be able to tolerate Zoloft and need to change but it’s too early to say for sure yet, and all drugs have their own side effects anyway.

As you are med sensitive maybe you should drop back to a lower drugs dose for a week or two and then gradually increase tirating up slowly to give your body time to adjust. Introduce the drugs low and slow is best practice. MAVers regularly find this helps and use pill cutters or open capsules and divide up the tiny beads inside to halve/quarter doses. We, MAVers, get pretty adept at thinking outside the box. Don’t accept defeat and stop taking it. Difficulties are there to be overcome and one way or another there’s generally a way around them, Good luck finding yours. Helen

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#14

Heckofagal - I note you state 15 years ago diagnosed hypo-thyroid - This also happened with myself I had dizziness at the time aswell which passed however the last 6 mouths they have come back worse than before, All my symptom have continued on and off since then brain fog/blocked ears/headaches/nausea/tinitis through the roof/dizzy/exhaustion and the rest. Repeated scans/trips to ENT/thyroid checks all come back normal however I keep getting repeat symptoms which are now worse than before. Not had a diagnosis yet just been referred onto a Neuro for me this all started around the time my thyroid was diagnosed and the symptoms have not got better wonder if its related. Thyroid has been under control for year now however symptoms at this time of diagnosis still there, Doctors cant find anything wrong so you know off you pop and get on with it!.