Hi all, I haven’t been on for a while and as I’m posting in this thread you can all tell why! I have been feeling really well for about 2-4 months now. I can do all normal things. My “bad” days are like what my good days used to be like Andy good days are feeling normal, intact feeling on top of the world. People always ask what got me better but in my life it was a mix of things. Personal and medical. It wasn’t easy and I never thought it would happen but I am living and feeling normal again! Working, socialising, etc. will stay in the meds gabapentin and pizotifen for quite a while to come. It did take a good 6 months on these drugs to see any positive effects!! Xx
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Right well this needs to be adjusted, have had a really bad month, computer work full time made me very ill. Did not socialise at all whilst working. Felt so strange. Confused and dizzy. And had vaccinations to go travelling 2 weeks ago, I’ve been in another world since. It’s scary to be back here and emotional, I knew I was not invincible, but I didn’t realise I was this fragile still and had triggers as easy as PC work and Vaccines. I’m back in the sick bed, and people around me keep saying I’m not myself the past month. I’m hoping this passes and this relapse is short lived, as I cannot cope being mute and dumbfounded again, people treat me differently this way. I feel so ill.
So sorry you’re not feeling well again. That sucks. Try to stay calm if you can as this phase will surely pass. Sounds like work might have set you off this time.
I moved your post here for general discussion as I think we should keep Success Stories only for those sorts of stories.
My physio says you have to expect relapses at first. You’re retraining your brain again going back to work, and so it’s just adjusting. You will get back to where you were once you’ve adjusted. Stay strong!
Oh no Trish, sorry to hear this. I was so pleased when you reported a success story. Maybe you did too much too soon. Have you spoken to Dr S about things? x
WTC I hope so, but I was not adjusting to screen usage, at all, which is why I had to leave that job after 2 weeks, and I felt better once I wasn’t using the screens again. When I come back to the UK again in Nov I will just have to look for a job which doesnt use computers. Work definitely makes me relapse. Will have to do something part time when I come back to help myself adjust slowly back into it. I’m sure my doc would say the same as your physio, but after being pretty much what I would consider “well” for 2-3 months, this kind of setback or fragility was not expected at all! I didn’t expect PC screens to be that much of a trigger, still…
I honestly think the continuation of this crappy month’s relapse is from my hepatitis a & b booster that I had 2 weeks ago. That is the only thing I can pin-point to making me feel this way again whilst not being at work. There are no pc screens to blame, and rather than having my symptoms as a reaction to something, I am feeling “out of it” on a constant basis with little to no triggers. Other-worldy again. And so tired/weak. I was wondering if anyone else has had relapses due to vaccinations or shots of any sort? And how long it takes to climb back up to base level. Cause this is shit.
Jem, I’ve called Dr S’ secretary, I hope to hear back from her some point today… Xx
P.s thanks for moving the post Scott I wouldn’t be getting feedback from others if you haven’t and I really needed to talk to other mavers right now.
Oh no, what a bugger. Very sorry to read of your relapse So dispiriting. Are you on any migraine meds still? What about Valium? I’ve sometimes had luck with it as a kind of migraine ‘circuit breaker’. Hang in there and good luck!
Oh no, what a bugger. Very sorry to read of your relapse So dispiriting. Are you on any migraine meds still? What about Valium? I’ve sometimes had luck with it as a kind of migraine ‘circuit breaker’. Hang in there and good luck!
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Hi Victoria, I am on Gabaoentin 3xday 300mg and Pizotiften o.5mg x4 a day, have been for about 8 months now. I don’t think I could use vallium, I used it once for a plane journey home and didnt feel well for a good week afterwards!
Screens are bad for a lot of us I think. I always feel worse, more swirly headed and tired after time on the computer and it makes my neck tense up a lot too.
Dr S was only due to return from annual leave today I believe. I am waiting to hear back from him too as I am struggling to get higher than 100mg on the Gabapentin. Hopefully he will have some words of wisdom for us x
Screens are bad for a lot of us I think. I always feel worse, more swirly headed and tired after time on the computer and it makes my neck tense up a lot too.
Dr S was only due to return from annual leave today I believe. I am waiting to hear back from him too as I am struggling to get higher than 100mg on the Gabapentin. Hopefully he will have some words of wisdom for us x
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GABA was tough for me in the beginning, really tough. Made me worse before better. 100% it was a struggle increasing the dosages I had weird symptoms too. Nosebleeds often. Took 6 months to see the good side of the drug, Pm me through fb if you want to chat about it some more xx
Oh no, what a bugger. Very sorry to read of your relapse So dispiriting. Are you on any migraine meds still? What about Valium? I’ve sometimes had luck with it as a kind of migraine ‘circuit breaker’. Hang in there and good luck!
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Hi Victoria, I am on Gabaoentin 3xday 300mg and Pizotiften o.5mg x4 a day, have been for about 8 months now. I don’t think I could use vallium, I used it once for a plane journey home and didnt feel well for a good week afterwards!/quot
Well that sux Do you feel like you’re getting better, worse or about the same each day?
One reason a lot of us refuse to write “success” stories is that we feel that it jinxes us and puts us at risk of “relapse.” The stories don’t put us at risk of relapse, the fact that we are predisposed to these issues is what puts us at risk–but of course, the cause effect seeker in us all see that we write the good, experience the bad and therefore one must’ve caused the other. Voila–superstition born!!! :roll:
There is another, completely different way of looking at your situation as you’ve written it that may be helpful. When I first started feeling badly I thought, oh this will pass. But when it didn’t “pass” I started to get frightened and then worried and then --well-- we’ve all wondered what we were supposed to do now that we were “stuck” feeling dizzy and off balance without respite–was this our new normal? But then–something worked–and you felt BETTER!!!
BETTER—
And it SUCKS that you feel badly right now, but the amazing thing is that you can, right now, remember the BETTER, and you KNOW it is there and possible and that you WILL GET THERE AGAIN and you will BE BETTER!!! There is light at the end of this stupid, crazy, horribly mixed up tunnel, and you’ve not only seen it–you’ve been OUTSIDE OF THE TUNNEL!!! And you will be again—SOON.
You’ve already gotten a different handle on this–I can tell by the way you are posting. You aren’t writing like a lost person trying to find a path–you are writing like a climber, trying to regain her footing. You sound more confident–you’ve identified probable triggers, you’ve identified a path forward, you’ve come here for the support you need to see this through and get to the other side of this rough spot. The fact that you’ve done all of that gives you the upper hand and gives you one major advantage over this disease–you aren’t as afraid and that will help keep the positive feedback loop (dizzy, fear, anxiety, released endorphins, more dizziness, more fear etc) at bay. It won’t last as long as previous rough patches have because YOU have a handle on what is going on!!!
I’m so sorry that it’s so awful right this moment–but keep climbing–and let us know when you find that foothold and start feeling better again!!! We’re right behind you!!!
I just heard back from Dr S and he told me to up the Gaba to 200mg at night and take it earlier. If it makes me feel tired by the morning then stay at 100mg and up the nori to 40mg. He says we can then review things in November.
All I can say is that I’m wishing you the best and, when you are in a low place, read and reread Dolf’s post – it is truly excellent advice and if you take it to heart it will help you.
I agree with the above post…very well said. I have been dealing with migraines since I was a teenager, but the dizziness started 2 years ago. I was hit so bad, it took me a good 16 weeks to start going back out into the world again. I actually had to go back to work after just 12 weeks, and it was not easy. Since that time I have had several relapses. Some that come and go, others that have continued for weeks. I don’t think there is one day that passes that I don’t have some kind of symptom, even if it is minor. Stay strong…I know it’s not easy. When you are used to feeling good, feeling bad is horrible and very stress provoking. None of us want to be back in that horrible place we were. Know that this will pass and you will move on and move forward. I have had to up my meds with some relapses… Can you consider this?
Hang in there! You will get through this and come out on top
I do worry guys. I worry whether this is migraine that I have. Even on good days I still cannot cope with computer screens… That’s not normal. I have very little tolerance to alcohol, contraception or vaccines. This makes me wonder if this really is migraine. Do some of you ever wonder if it is a long term virus or infection? Like Lyme. Is this mad for me to think?
Jem - just heard back from Dr S, he said this is quite normal and can take 3-4 weeks to start feeling better after vaccinations. I do remember having colds for about 4 months constantly up until I got the dreaded day of waking up dizzy in feb/march 09. I just put this down to a bad bout of winter colds. I also had two massive bites on me that my bf and dad thought were spider bites as I was living in the cellar. I do wonder if the testing that was done for Lyme was sufficient enough as yes I have had good days, months on the medication now, but am still unable to use PC screens, have low energy and confusion as a base. So it seems I am not completely fixed per say, there are still underlying problems, which I fear will never go away. I do remember Dr S saying that it could take up to a year or more to get recovered. So I will not let this set back deter me, but it is doubting my faith a little, and I worry about when I need or want to go back onto contraception. Will I be a mess like this again? Or will I just not be able to have it? Will I just have to do work that doesn’t involve a computer? I guess I will only be able to tell in time whether these things become an option again for me. This is THE FEAR I suppose creeping back in
Any time you are dealing with a condition that is diagnosed by exclusion, has changing and amorphous symptoms and waxes and wanes, it would be contrary to the human condition to not question the diagnosis. This is especially true in ligh of recent stories here indicating people who had an MAV diagnosis finding other viral causes after extended periods. At the end of the day, the name is pretty meaningless to me except to the extent it leads to a treatment option that works. There are many people here with MAV diagnoses that have the same “sensitivities” you point to and, no, it’s not normal – but neither is migraine. Black and white conditions, where a doctor says “you have cancer – see this tumor”, leave little room for doubt. A disease/syndrome that manifests in headaches and/or dizziness and light/vision sensitivity is open to many different potential diagnoses and treatments.
The good news is that you just went through a period where you were well. While that creates a more stark contrast to how you feel now after a setback, you can hold onto the fact that you have improved and will improve again. I think it was said best when it was said that the brain is healing and that is not necessarily a linear process. If I were you I would not head down a path of viral conditions unless and until you travel a lot further without relief. I think you will feel better WAY before it comes to that.
This is especially true in ligh of recent stories here indicating people who had an MAV diagnosis finding other viral causes
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The jury is most definitely still out to make this assumption. It may be that the said virus is the sole cause (though unlikely to produce dizziness), more likely the trigger or not anything to do with the problem at all. Time will tell.
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At the end of the day, the name is pretty meaningless to me except to the extent it leads to a treatment option that works.
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Naming it and understanding what it is is the whole basis for arriving at a treatment plan and successfully managing it!
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A disease/syndrome that manifests in headaches and/or dizziness and light/vision sensitivity is open to many different potential diagnoses and treatments.
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Strongly disagree. Once the common peripheral and central issues are ruled out, that person is almost certainly dealing with migraine. It’s fact, not my opinion.
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I think it was said best when it was said that the brain is healing and that is not necessarily a linear process.
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Migraine is a genetic disease. The brain does not heal itself, rather we work to increase its threshold to make it tougher for a trigger to set it off and have more room to move. Once a migraineur always a migraineur until someone works out how to cure it. People sometimes relapse but they pull out if it again. Remission is also possible of course for some lucky individuals.
I do worry guys. I worry whether this is migraine that I have. Even on good days I still cannot cope with computer screens… That’s not normal. I have very little tolerance to alcohol, contraception or vaccines. This makes me wonder if this really is migraine. Do some of you ever wonder if it is a long term virus or infection? Like Lyme. Is this mad for me to think?
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Hi Wasp,
There’s nothing you’ve written there to suggest that it is not migraine you are dealing with. Difficulty with computer screens is as common as a cold with a runny nose, in fact there’s a massive thread on here dealing with that. Alcohol is a main trigger for migraine. Nothing strange there. Contraception affect hormone levels – again not at all unusual that it would/could trigger migraine. And finally I don’t know what vaccine you had but they are designed to bring about an immune response. Again, this is a massive trigger for symptoms for many here.
‘‘The brain does not heal itself, rather we work to increase its threshold to make it tougher for a trigger to set it off and have more room to move’’
How do we actually know this? The fact that some patients can come off the meds and the fact that migraine normally improves over time its a good indication that the brain can heal.
I wouldn’t be getting feedback from others if you haven’t and I really needed to talk to other mavers right now.