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Relapse after doing so well 😧 Will it ever go for good?


#4

Thanks Lorri. You too. Keep us posted on your recovery.

Yeah I’m not impressed with the state of ENT medical technology.

If you join the dots you discover that various inner ear conditions can present as migraine.

They seem to only have hypothesis and diagnosis seems to follow flavour of the year.

In fairness treatment of symptoms is quite good considering.


#5

I had my appointment with Dr Surenthiran yesterday and he has upped my dose of pizotifen. He said give it 3-4 weeks and if it doesn’t stabilise it to increase the dose again. He said I’ve had an earthquake and there may still be aftershocks.

He said it is just a minor setback, but it shows that it is still lurking beneath the surface, so I must not overdo things still. So going back to work is not a good idea for now. But I remain positive that eventually I will get to 100%!


#6

How you doing now Lorri?


#7

I’m feeling a bit better thanks turnitaround.
Having taken it easy all week I managed to go to IKEA yesterday. The lights and noise did provoke my vision, head pressure and blocked my ears and I felt a bit lightheaded, but I didn’t have any dizziness or disequilibrium - yay!

However I have to remember what Dr Surenthiran said not to overfill the “jug”, but pace activities and not overdo things. I certainly don’t want to experience any aftershocks!

I asked him about taking magnesium, as I’ve read about it on here and people doing quite well on it. He said it was fine and suggested to take it akong with B2 and coenzyme Q10 too. Anything so long as I can live my life again.

Hope you’re doing well too.


#8

Hi Lorri! Can I ask you the amounts of the supplements Dr S recommended? I’m curious since he’s the MAV “expert”. Thanks so much!


#9

Hi Lee,

He didn’t tell me how much to take, but I will see what the recommended amount is on the pack, once I receive them. I did read on here and elsewhere though that chelated magnesium glycinate is best, as it doesn’t cause gastrointestinal issues and is absorbed better by the body.

Hope this helps Lee.

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#10

Thank you Lorri :purple_heart:


#11

Hi Lorri,
I started to improve in August and was able to go out most days and even went in shops by myself, then I had a relapse in September when I had planned to go back to work for 2 days a week. I’m still off work full time now, as things haven’t gone back to how they were in August. It’s great that you’re able to see Dr Surenthiran, it seems that he’s ‘the best’ in the UK! Fingers crossed for you


#12

Thanks Louise. I hope you are improving and can get back to work soon. It’s a frustrating illness, as we have to be so patient to get better! Stay positive! Keep us updated on how you’re doing.
All the best,
Lorri


#13

hi lorri I know this post is a few months old now but did you ever get better after your relapse? im curious to know as im going through my first relapse and im 3 weeks into it,hope you are doing better :slight_smile:


#14

Hi mellybob,

Sorry to hear that you have suffered a relapse too.

From the relapse in November I did improve over several weeks, having upped the meds and started on supplements as recommended by Dr Surenthiran. But then along came a very busy festive period and I had another relapse, but the good news this time was that it wasn’t as severe as the previous one and I recovered a lot quicker too. Also I upped my meds again.

Since then I have had another attack, almost 2 weeks ago and this was even milder. I have recovered so much since then, rather than taking several weeks to be functional again.

Although I say “recovered” I still get symptoms and I’m yet to return to work, but hopefully with not overdoing things it will improve even more and I will not get any further relapses. So I remain hopeful and optimistic.

Now I’m not dizzy all day any more, I can go for a walk, drive and socialise a bit. I even managed the cinema last Saturday (only 1 week after the last relapse) although I had some minor symptoms, I managed to enjoy the film! I can tolerate shops and stores way better than before, though I’m very mindful of not overdoing things still. You really do have to be so patient, but it does seem to pay off.

Hope this helps and here’s hoping you recover soon mellybob, all the best,

Lorri


#15

Great progress Lorri!

You know my Neurologist is surprisingly measured in her encouragement but said one remark which resonated as I picked up my bag to leave her office the other day:

“Don’t give up”

I thought about this afterwards. Why would someone say this unless there was a genuine chance of improvement?


#16

Hi Lorri

I’m with dr Surenthiran too but he’s never recommended supplements to me. Which ones did he recommend to you? I had a set back in January too, Dr S said it’s very common for set backs in January because of the stress of Christmas etc x


#17

James, I think from what you’ve said you’re getting there too like me despite relapses, symptoms, tinnitus etc. Also I was encouraged by you saying how important it is to try and do some normal stuff like going out. With meds and supplements it’s made it possible. Dr S even told me that it is possible to get rid of for good! I need to believe that!

All the best,
Lorri


#18

Hi pepper,

I mentioned magnesium to him when I last saw him in November, and he agreed it was a good idea and to take it along with coenzyme Q 10 and vitamin B2. It seems to have helped along with meds. It’s a shame he didn’t mention it to you or to me when I first saw him last year.

All the best,

Lorri


#19

I agree with Dr S!

The thing that’s tough about this condition is it takes so darn long to get better it drives you nearly spare!!!


#20

I am just dropping in on the supplements part. Did you notice any increase of symptoms after taking the supplements? I just started Effexor on Saturday and now started with B2 and Co Q10 but since taking the supplements I am way more dizzy.


#21

I can’t take the supplements as they make me really dizzy too. I tried magnesium and B2 but gave up on them. I use a magnesium oil spray now. I wish they did all the supplements in oil form.


#22

Be careful of confirmation bias. Symptoms will fluctuate in anycase so it’s really hard to correlate and determine the exact cause of symptom spikes. Don’t blame the wrong thing :slight_smile:

The worst thing about Magnesium supplements imho is the size of the pills, I thought I would choke several times.! :joy: The oil sounds helpful.


#23

Hi Agnes,

I didn’t get any increase in dizziness or symptoms after taking the supplements, but I think like the meds they take time to work. I can only go by the fact that my recent vertigo attacks have become so much less severe, as has the recovery time.

Hope you start to get some relief soon,

Lorri