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App with dr s surentherin


#1

Good afternoon everyone

So thought I’d update you all after my appointment with dr s surentherin . I recorded the whole thing so I can refer back to it when lack of hope gets the better of me . He made a lot of very key points to me . Which I hope some will find helpful.

He firstly said I am to come off dosulepin and eventually proprananol aswell. He said these meds are not the best for treating migraine variant balance disorder his words not mine . However I know so many here have had success with both of these meds but I have to listen to his advice as he does seem to be the best doctor for this condition.

Interestingly enough he said proprananol works on a different part of the brain that is not helpful for this type of migraine but very helpful for typical migraine . I found that pretty interesting .

He told me I am to start pizotifen from tonight going up each week by 0.5mg. He did say this will increase my appetite so I have to be careful and he also said to avoid processed carbs.

He explained that the 247 symptoms are background and the major attacks are keeping the background noise going and they would take time to settle. He also told me not to do too much on my good days this I do find very hard as it’s hard to know your limit .

He said every single symptom I mentioned was totally normal for this illness and he’s heard it 100 times before . My most worrying was the spaced out disconnected feeling and visual snow/shimmering for those wondering he said these will go BUT it may take a long time . He told me he’s not surprised I am not getting relief on the medication I’m on. He said nortryplin act differently to dosulepin even though both are trycilic anti depressants .

He also said a medication can take up to 4/6 weeks to feel any effects so I should not assume it isn’t working before then. He also said not to write off a medication before hitting the right dose. Both of these facts put my mind at rest . He said ALOT of people need a combination of 2 medications to calm the brain down and it’s not uncommon that it can take a while to find the right dose and combo of meds.

I told him the trouble I have had with my gps and he said I should put my foot down more and that gps know hardly anything about this condition so I should be stern with them. He said the diet was important so I am going to be more strict . He said my recovery is going to take a long time and I have to be patient . He’s asked to see me again in 3/4 months but said we can try to move the appointment nearer.

Overall I feel better for going today , I think the main thing I wanted from this was reassurance and a different plan of action which I got . I will keep everyone updated on how the pitz works but I do hope some found this helpful . :slight_smile:

A


#2

Great stuff @Amylouise! Thanks for the update and keep it up!


#3

Thanks @turnitaround hope the info is helpful :slight_smile:


#4

Well, well. What a woman! And you even managed to record it. Well done you. I’m sure lots of people will have cause to be grateful to you for doing that, me included, because it’s full of useful info to which many people will never have access. I’m so glad his words seem to have reassured you at last. You must try - hard as it it- to maintain your present positivity. That’ll help some on its own. Thanks again for sharing. That’s the only way many people are going to move forward, by gaining tips from the experiences of others. It’s true what Dr S says about being firmer with GPs. Trouble my brother found with doing that, on our mother’s behalf, was they were told by the Practice to go find another doctor somewhere else. Helen


#5

Thanks Amy for letting us know this great info. I dont live in the UK because if i did I would also be going to Dr. S.

It is great to hear that the visual snow will go away, that is a very difficult symptom for me, so it comforting to know that it will not be there forever. Also great idea on recording the visit, i will start doing that too. I do hope pitz works for you and start to feel better sooner.


#6

Thanks Helen :slight_smile: I really hope people can benifit from this info . As I know dr s is the best in this field he certainly knows his stuff . There were so many people waiting to see him it was over whelming to see . I could hear them while sitting outside and they all had my symptoms ! I agree about being firmer with gps, although I think I may just change as mine seem to be awful . X


#7

Your very welcome @SolarVivi he did say I would need medication to allow the brain to heal but hopefully with time they’ll dial down :blush::pray:t3:


#8

Great update amylouise, delighted you got on well, hold onto this positive assurance and keep moving forward, good luck with new med x


#9

Thanks for updating us Amy. Pizotifen was my 3rd drug i trialed and sadly i didnt give it a chance to work…i may ask to give it another go as i could tolerate it…just made me pile the pounds on…good luck
Jo x


#10

Sounds like a great visit. I always feel better after seeing my Neurologist and updating “the plan”. Keep going! You’re gonna make it!


#11

Thanks so much @nin yes I’m trying really hoping it helps :pray:t3:


#12

Thanks so much @Jojo65 i start tonight :slight_smile: yes he did say to watch my calorie intake but said if I’m careful il be fine xx


#13

Thanks so much @ander454 I feel a bit more positive now :slight_smile:


#14

Wow, what a fab report Amy - very useful and I am so glad that you are going to take Pizotifen as we can compare notes!
I am now taking 4 Pizotifen per day as instructed by Dr S - he said to increase the dose if I hadn’t made any progress. I have got stuck at 80% better. So far I am not sure if the extra dose is helping, but every time I increased it before to the max of 3 I went backwards instead of forwards. Tonight my ears are ringing loudly - this morning they were a lot quieter, however, I went to Canterbury this morning. and was rushing around for a couple of hours followed by a pile of ironing this afternoon - maybe that was too much? I find it difficult to pace myself when I feel,OK. Alternatively it could be the nuts I ate this afternoon - i only had a small handful,but perhaps that was enough to upset the apple cart! The diet is important but it can be hard sometimes. The Diet sheet Dr S gave me is less strict than the Heal your Headache diet but I do wonder if there are other things I should be avoiding. So far I haven’t noticed any weight gain on Pizotifen but I am a bit concerned that taking an extra dose will have an effect. That’s why I try to keep moving around but then end up exhausted! :joy:. Let me know how you get on . Xx


#15

I also started taking pizotifen last week with Dr.S . He had prescribed Pregablin but my GP wasn’t happy about that and scared me silly about it and I got very anxious, he also wouldn’t at this point consider referring me on the NHS - so yet another battle to fight!. I’m only on 0.5mg so far and Dr S warned me that he thought that dose would do nothing for an old lag like me and that I’d need to go up to at least 1.5mg and to give this particular drug 12 -14 weeks to work well (as opposed to perhaps 4-6 for the pregablin).

I have to say that it might be coincidence but I think that the 0.5mg has helped. I was able to mow the lawn yesterday and feel calmer, my symptoms have all lessened a little bit - so although I’m not counting any chickens… it’s been a better week than I’ve had since June.

I agree that it’s difficult to pace yourself when well and I do wonder about the diet. I don’t think excluding nuts are in the 6c’s diet but are in many other migraine diets. The “heal your headache diet” is very restrictive I did for a year when ENT had set me adrift.It’s tough but even Bucholz admits that it is only eliminating the most common triggers that are known/reported by migraineurs - basically you need to work out what may be a trigger for you (and that is so difficult - after 7 years of food/migraine diaries and spreadsheets I still haven’t found much except alcohol and a lot of caffeine).

I really hope pizotifen works for you AmyLouise. I think it is also a drug that is easy to add others to if you need a combo. I’ve not been sleepy but have had a better appetite - but I think that is because I’m not so spacey and dizzy which always puts me off food.- but it is early days. Good luck:slightly_smiling_face:


#16

good luck Amy ! Hope it helps
x


#17

Thanks me too :pray:t3:


#18

Thanks jan I figured someone may find this helpful :slight_smile:
I must say I felt happy and reassured with this app. I really hope the pitz helps although dr s said it can 6/7 weeks to work. However I’m praying it’s the one for me . I think I’m regards to the 80% depending on what symptoms are remaining he may add another med . He did say a lot need a combo of things. I def think increasing can send symptoms mad for a few days so hopefully this calmed down :slight_smile: it does sound like you’ve done a lot I def find it hard to sit still :grimacing: il def let you know how I go started yesterday . Can’t rememebr but did you say it took a while to kick in? Hopefully it doesn’t make too hungry lol x


#19

Thanks @sputnik2 clearly pitz is a popular medication , is pitzotifen your first med ? Funny my gp was fine with pregablin :confused: so odd . However I’m happy and hope pitz helps as it has less side effects but il take anything to get some normality back in my life :slight_smile:

The triggers I find hard to identify caffeine and eggs definatley are . However I’m just going to try to stick to the 6 cs the hyh is very hard for me . Did you find any relief from it ? I do hope the pitz helps you sounds like it already is :slight_smile: hoping I get some relief please keep us updated .

Yes hopefully I’m not too sleepy on it and my appetite I can keep in check :grimacing: x


#20

I’ve found a few nuts isn’t bad, but two handfuls or so can give me trouble. Gorged on pistachios last week and was trouble. But also had a cold, so hard to say… Peanut butter is okay for me though :grinning: