I think if hadnāt emailed Dr Silver my GP wouldnāt have referred me so in my book I thought he was good before I even met him!
I looked on the milky bar website (as you do!) and saw they have a raisin and biscuit version which sounds lovely but I donāt know if itās chocolate biscuit or plain. I need to locate one in a supermarket and look at the ingredients.
Yes, he said weāll treat Pregabalin as my first med to try since I am half way through titrating it. I donāt think he wanted me to be trying two together because then we donāt know which one helps, if I see an improvement. I am on 300mg, the maximum is 600mg and I need to increase by 75mg per fortnight. Then stay on the maximum dose/maximum tolerated dose for 3-4 months to see if it helps.I know I feel a bit better on gabapentin or pregabalin than being drug free. When I came off the gabapentin to start the pregabalin I had forgotten how rotten I could feel. Yes I am still on Ami, just 20mg and he said that was okay at such a low dose because before I cut out caffeine I had restless legs and the tricyclic antidepressants can make this worse (which impacts sleep, which impacts migraine). I take it for pain, but donāt think it gives me any pain relief really. If I get some pain relief with the pregabalin then I will try coming off the Ami. He said he would see me again in 12 months as my GP will receive the huge letter that tells them how to work through the meds. Iāll get a copy and some diary sheets to record everything. He is also sending a copy to my pain doctor because I mustnāt be prescribed opiates for pain so I was very pleased all the information will be shared so I donāt have to explain it all.
How are you doing? Iāve read that you have switched to Dr S in Kent.
That all sounds good Kath. There is no doubt that Dr Silver is expert in migraine and he does a very detailed letter to your doctor which is good. You should get a copy of that but it may take few weeks to arrive. I did switch to Dr Surenthiran yes. I just felt that taking 3 different meds all at once was too much to start on for me and I wanted to try increasing the nortriptyline to see how far I could go on that first. Dr S agreed but I so far have only managed to get up to 30mg before I start to feel more groggy and sedated. I may try a final time to go up again but I am due to see Dr S again in April so I will see what he suggests and whether I should add in another med at this stage. I have improved in the last few months but I donāt think 30mg nori will be enough to control all the symptoms but I would rather stay on that for a longer time to see than take loads of things and have awful side effects and not really know whatās doing what. I am glad I got Dr Silverās opinion because I know what meds he recommended for me and they are there as an option in the future but would just prefer to take a slower and more careful approach to the meds to make sure I try each one properly - if I can tolerate it. I did try the beta blocker, Metoprolol, that he recommended as a first line and gave up pretty quickly. I know you should stick it out longer and I would had it been something like Topamax where everyone seems to feel bad at the beginning but most people with beta blockers donāt have major problems with them. They may feel a bit tired or breathless at first but with me I felt totally drugged, depressed and awful and that was only on 12.5mg.
Anyway, I am so glad you found out about Milkybar being okay and I hope those biscuits are safe once you track them down! x
I saw Dr Silver in July. He asked me a lot of questions about symptoms, some I didnāt realise had anything to do with migraine. He seemed to know what was happening to me. He was lovely and I felt so relieved meeting him. I could have cried when he gave me my diagnosis, he didnāt think I was mad, there was actually something wrong with me! I had my first dizzy spell in 1988 so Iāve seen a few doctors (only 1 of my GPs believed me). He talked to me about migraine and lifestyle. He was impressed when I told him that, thanks to this forum, I was already caffeine free etc. He talked about the medication he would suggest to my GP. The drug and order of trying them depends on your symptoms and other medical history. My list was: Metoprolol, Nortriptyline, Topiramite, Sodium Valporate. He said that if I didnāt respnd to these then I might be able to try Flunarizine. I didnāt tolerate the metoprolol well as I was very breathless so am now on Nortrityline. His aim is for 28 days a month headache free. Its a nice aim but at the moment Iād settle for 1! He says you have to be on your maximum tolerated dose for at least 3 or 4 months before it has its full effect. He said that if it is successful (ie Iām symptom free) to stay on it a year and then start reducing the dose over 3-4 months. If after 4 months on maximum dose its not working, either swap it or try adding another drug. At the moment Iām about a 2or 3 out of 10 headache wise, and 1 or 2 dizziness and I feel much less foggy. So fingers crossed! I heard about Dr Silver on this site, so thanks so much. You only have to talk to him to know that heās an expert and that he understands.
Lovely to hear from you again. Really pleased you are having success with Nortriptyline. What dose are you on and have you reached your max dose yet? I have struggled to get above 30mg as it seems to make be more groggy and sedated above 30mg. As you know, Dr Silver told me to stay at 20mg when I saw him and then add another med as a first line med. I did try the Metoprolol but gave up fairly quickly due to the way it made me feel. I am yet to try his next med which was Topiramate but, as I am now under Dr S, will see if he thinks it would be wise to add that in next. I was always a bit puzzled why Dr Silver gave you nori as a second choice med but then told me to not increase above 20mg and it was not on his list of meds for me. I know he bases it on your symptoms and history etc but it would have been good if he had explained his reasoning to me for his choices. I think I must have seen him on a very busy day where he was under time pressure so maybe why I felt it was all a bit rushed but others have not found that. All the consultants seem to want to ask their own questions which they are directing towards a specific condition they have in mind but sometimes I wish they would read or listen to the patientās whole history and the symptoms and signs the patient feels are most bothersome/significant to them and in that way get a full picture of whatās going on. Otherwise they are just asking questions to fit the condition into or out of one or two boxes they have in mind. This is something I have thought with all the consultants I have seen.
Anyway, I am glad your symptoms have decreased so much Mags. I hope you get more improvement. Do you think nori on its own will be enough or would you consider adding another med? When do you next see Dr Silver? x
Itās nice to see another patient of Dr Silver posting here. Sounds like youāve been suffering for a long time but it is so good to hear you are having success. I hope it continues and you get your symptoms under control so you can be symptom free for 28 days a month. Like you, Iād be happy to have just one day symptom free. I too felt a huge relief when Dr Silver diagnosed migraine because I kept talking about it to my friends and family after all my research and reading and I really donāt think anyone believed me. Now it is in black and white on my medical record it means alot.
Jem, did Dr S (in Kent) tell you how to titrate the Nortriptyline and what the maximum dose is? I wonder if those side effects would lessen with time. Itās hard to know how long to give a med to see if the side effects settle. I must admit when I started pregabalin I felt drunk and so very dizzy but after a week or so it settled down. I am glad I had emailed Dr Silver before I saw him (and my GP included it in my referral) because I did outline all of my symptoms and the situations I find really difficult. When I was seen by a neuro otologist I had to fill in a long questionnaire and I remember feeling that I didnāt get the opportunity to describe my symptoms because the questions didnāt really correspond with my particular symptoms very well.
Kath, Dr S told me to go up to 40mg and see how I felt before deciding if I needed to increase further. I was already at 30mg when I saw him but had only just reached that level (in November) so I waited a few weeks at 30mg then went to 35mg and then to 40mg. I took 40mg for about 3.5 weeks but realised that I was feeling worse again. I thought at first I was just having a few steps backwards but then I realised the dose was making me so groggy. I then went back down to 30mg and felt a bit better again. I tried to go up to 35mg a few weeks later but the same happened so I have stuck at 30mg ever since. I believe the highest dose of nori he recommends for MAV is 75mg. I am glad your increased dizziness on the Pregabalin only lasted a week. If I end up on the same med then I will bear that in mind. I know Dr S likes Gabapentin/Pregabalin so it may be what he suggests next for me x
Hi Jem,
Iām up to 75mg of Nortriptyline. I got up to 50mg and felt much better so stayed on that for a while but then the headaches increased a lot. My GP said to go up to 75mg and if necessary 100mg. Iām planning on staying on 75mg if possible. I get a bit of indigestion after taking it and have noticed a few pounds of weight gain since going up. Iām still tired at times but then I think thats part of being MAVy anyway. Its only really increased a couple of hours after taking it and Iām ready for bed then anyway. Iāll see how this goes before trying another drug. Iāve been on this dose about 3 weeks now.
Kath, Dr Siver said to increase by 10mg up to approx 1mg per kg of body weight. He also said that some people need more, or less, depending on how they tolerate drugs. He said a maximum of 150mg. My GP said that 150mg is what they start people on for depression so it wonāt do any harm going up to that.
Mags, sounds like you are having good success on nortriptyline. You are doing well to tolerate the high dose as well. I am a bit gutted I canāt seem to get above 30mg. I may give it a third attempt to get higher before I see Dr S in April. Given Dr Silverās ratio he gave you for 1mg per kg of body weight I should be able to reach about 50mg. Do you feel the nortriptyline is helping your actual symptoms more than the beta blocker did? x
Hi. Does anyone have a link to Dr Slivers talk please. Iāve listened to it a couple of years ago and now my husband wants to but we canāt seem to get it anywhere? Thanks in advance. Chandra
x