Well I finally met the big cheese dr surenthiran yesterday. I have been previously been under the care of queens square and have been on prothiaden at 75/150mg for 18 months. I am not going to go into great detail but over the last 6 months or so I lost a lot of faith in the some of the people at queens square. There seemed to be a lack of knowledge about meds used to treat mav and I believe they r using Vrt when it shouldn’t be used. I have been doing a lot better but over the last 4 or 5 months I have tried to increase my activities and act almost like a “normal person” however this has been accompanied by about 5 MAV attacks. After reading so many posts about dr s I made an appt to see him. He did not disappoint. He was so thorough with his questions I was v impressed. If anything he was too particular. So different to other doctors. He told me I definitely have MAV but believes the prothiaden is not the right drug for me. I should not be getting frequent attacks. I am down to 75mg of prothiaden and have had no problems withdrawing so I will come off it completely and start on gabepentin working up to 150mg. I am going to see him again in 2 months to see if I need to increase the dose or take another drug in addition to this. I think he is prepared to hit it hard as he feels my misdiagnosis and mismanagement over 6 years has lead to the “nail” being well and truly hammered into my head.
I am excited that perhaps with gabepentin I will reach a point where doing lots won’t induce attacks and I can have a family in the future and go back to work.
I will let u all know how I go with the gabepentin, I hope the side effects are not like amitriptyline which had me climbing the walls and hallucinating!
P.s don’t waste hundreds of pounds of VRT for me it was totally futile
If you have had a great deal of improvement on prothiaden, then why wouldn’t you just add gabapentin on top of this???
I live in the U.S. but I would LOVE to meet dr. s. did he sound confident that he can get you (and other MAV patients) back to full functioning? Did he say anything about his success rate with this? Did he say anything encouraging about mav treatment outcomes? My own Dr. is actually pretty pessimistic which makes me feel like shit!
Hi Becks
Glad you finally got to see Dr S and you found he lived up to your expectations. I am a bit surprised he told you to come off Prothiaden after all your improvement on it. I thought he would usually add a second line med. He definitely seems to like Gabapentin. Did he say why he is prescribing Gabapentin for you?
I wondered what you mean by MAV attacks? How do you know it’s an attack and how long does it last?
I hope Gaba works wonders and please let us know how you get on x
Think of you often and wish you best of luck xoxo
Did he say why he chose Gabapentin for you?
Good luck!!
Thanks for the replies.
I think dr s thought I could come off the prothiaden because I had been on a maximum dose of 150mg for about 6 months and lower doses for over a year and I was still having severe vertigo attacks. Also, I have halved my dose and my chronic symptoms have remained improved.
I think pregablin may be a good drug to stop my attacks. I ill let u know how it goes x
Hi Becks,
Isn’t is refreshing to find a doctor so knowledgeable of this condition and who doesn’t fob you off with a diagnosis of anxiety or some other psychiatric illness. They are very few and far between. So out with the Prothiaden… did Prothiaden help you initially? I remember reading that it helped you tremendously at one stage. Just curious because I have started Prothiaden too… have reached 75mg but have only been on this dose for 10days. Too soon to tell whether it is working. All the best with Gabapentin… Another drug on my list should the Dothep fail.
Kylie
Great info Becks. Dr S sure does sound like “da man” and you’re well on your way to having this sorted out.
One thing I would like to say here: Some people have mentioned recently that they don’t care what this is as long as the symptoms go away with medicines treatment. However, I really disagree with that notion. Knowing what this is (if possible – for some it’s not always clear) is really important because it does not just rely on medication. A migraineur must put a migraine lifestyle into play for one. By not doing so can render a medicine useless. Second, they could end up wasting their time and money on something like VRT for example if VM is not identified. Again, for most VRT is completely useless or makes things worse if the migraine is not being targeted as you rightly pointed out.
— Begin quote from ____
I think he is prepared to hit it hard as he feels my misdiagnosis and mismanagement over 6 years has lead to the “nail” being well and truly hammered into my head.
— End quote
That’s an intersting way to put it! :lol:
Dizzy kylie-I did see a slow but significant with the prothiaden. I think for me a therapeutic dose is at about 100mg. I think it really helped my brain to heal itself but not sure I will see any further benefits. Hopefully my brain will be able to improve even further by stopping the attacks with pregablin. I would not hesitate to take prothiaden again if necessary to help with chronic symptoms.
Scott-DR S is the man!! I am not naming names but a neuro-otologist referred me to a very expensive phychatrist because I was anxious about my symptoms. Dr S thought this was strange because I have a condition (vestibular migraine) that should be treated properly and subsequently the anxiety will go away. Focussing on treating the anxiety is not going to make the condition go away.
Hi Becks,
Did Dr. S. say anything about his success rate in treating this problem? Or how likely it is to get under control? My own dr. was pretty pessimistic which doesn’t make me happy 
I have had this 6 years and am greatly improved but I don’t ask any more how long till i get better and will I ever get completely better. I was told so many different things and most were untrue. However dr s did say he has helped everyone but 5 people with medication and even though I have had this do long the drugs may take a while to work but I should see big improvements. Is your doctor a specialist?
Yes I’m with you on that Becks! I don’t ever ask drs will I get better or when either. To be honest I cannot have blind faith in anyone/anything and certainly when it comes to drs I have been told so much incorrect rubbish I would never just trust completely in what they say. I have to rely on how I feel and what I have learned through research and experience in order to judge how I am doing x
i never ask “when will i get better” - i asked my dr. (an otoneurologist) if he ever has patients who get substantially better so that they can fully function- not symptom free-i know that is not possible.
Becks I am so happy for u that u finally got to see Dr S and I also agree about Queens square very behind where MAV is concerned I hope the GABA helps you further. I’m am holding well on a drug combination now I’m well enough to go back to work which I never thought possible six months ago.
I would love never to relapse again but we just don’t know with this thing but you have already come so far from just 18 months ago you have suffered so long with this without a diagnosis I admire you.
I too never ask if it will go I’ve accepted it probably never will after this many years but happy to have it under some control again getting stable is the most important thing with this illness.
Let’s hope 2013 turns out to be a good one for us all. Jem how r u? What are you on now ? I think of u often xx
Hey Donna
Really glad you are doing so well. It just shows how things can change with this. I am doing ok on 30mg nori. I can’t really tolerate a higher dose but I seem to be having more good days and I think I am still improving so am hopeful it is working. I may consider adding another med at some point but just seeing how far I can get on the nori. It is a lot better than I was a few months back so am really grateful for that even if I still have a way to go xx
In regards to the VRT Becks, I was doing this for over 6 months religiously . My Physio actually said to me that my migraines were holding me back and until I successfully treated them with meds the exercises were futile. I happily stopped them (They were making me feel like death anyway) and began my journey finding that elusive med that might just end this rubbish.
Blondie-I am so happy to hear you are doing well now. Pizotifen sounds like a great drug for you. If I need to add in another drug pizotifen would be my choice. I have so much admiration for you having the guts to have a third child. I hope you can continue to enjoy all 3 of your gorgeous boys. For me pregnancy is on hold as I would never become pregnant on an anitconvulsant but hopefully I will only be on it for 6-9 months. I would then go straight back on drugs as soon as I had given birth-no question about that.
Dizzykylie-Your physio sounds good, I wish mine had given me better advice and LISTENED TO ME!!! Hang on in there with prothiaden it has helped me massively. You need to probably need to be on 75-100mg for a good few months. I must not forget how much it has helped me. For me I think it has done as much as it can. I am hoping the pregablin will be the final piece of the jigsaw.
I am taking pregablin not gabepentin. I believe pregablin is a more recently developed form of gabepentin which is more potent and v v expensive. I was confused by the very high doses of gabepentin people were taking.
Thanks Becks it’s been a hard road annoys me this illness ruins our plans and dreams but tis life I guess. You will have a family when the time is right.
I don’t blame you for going for more improvement first u really need to feel the best you can before rocking the boat excuse the pun. Before I took the Pitzotifen I felt very weird and could not walk properly I kept saying I felt wonky all the time really bad disquillibruim. That feeling has now gone I am beyond relieved thought I was stuck that way.
I am grateful I can take drugs with little side effects Pitzotifen is a dream med for me very gentle.
I look forward to seeing if u improve further on pregablin.
Jem you have improved which is good are you considering another med? Can u add Pitzotifen or topomax? I know at least ur better than last year we both relapsed at the same time u saves my sanity those months as u were feeling the same as me xx
Yes the second half of last year was awful wasn’t it! I am glad pizotifen is helping you so much Donna, long may it last!
I will speak to Dr S about a second med when I next see him in the next few months. Pizotifen would be something I would definitely want to try, heard it can cause sedation which I don’t want though. Also Topamax seems to help a lot of people but not sure if Dr S likes that med. I will let you know what happens xx