I rang again at 5pm as Iād heard nothing yet again. Got a phone call back to say I have a telephone appointment between 8.30-1pm. If I hadnāt have rung again, I wonder how long it would have taken them to contact me? Anyway at least I can have a chat to him and be pointed in the right direction as to what to do next:triumph:
Gail please tell me you got your call and it was helpful?
Hi Revolving. Yes I did get my call and he was very helpful. He told me I have more knowledge than all the (local) doctorās put together:grin: He said I never had Labyrinthitis, it was always the MAV. Heās writing a letter to my GP outlining what medication I should be on at what doses etc. I will then be reviewed in three months time. I got told off for not doing the migraine diet. I didnāt follow it very well years ago, but seemed to get away with it by just taking the Gabapentin. This time however I need to show willing, especially as my symptoms are much worse. I donāt know whether the food affects me or not because I never have an actual migraine.
Gail that is great news. That is also how my neurologist works as I live so far away from her. I wrote a letter to her yesterday to give an update as she requested me to do that.
As far as the headaches are concerned, I donāt have migraines any more but still do the diet because I find eliminating certain things helps with MAV too, especially ānormalā tea, milk, citrus, chocolate and all nuts except almonds. It is trial and error but it does help some people.
I hope your GP is supportive and you will soon find what helps you. How did you fare with the low dose of topiramate?
I tried the Topiramate for a few weeks years ago to top up the Gabapentin. Unfortunately it gave me a continuous headache, so I had to stop taking itā¦ I think my GP(s)-itās pot luck who I get to see, will be ok with the letter from Dr Surenthiran and also understand why Iāve had to involve him again. Iām just waiting now for the letter so I can start on the Gabapentin again.
Fingers crossedāŗ
I donāt believe this. After waiting patiently since I had my consultation, I have phoned this morning as I have not received the letter from Dr Surenthiran outlining what needs to be done medication wise. Iāve been told they have no letter to send and he is away again and not back till the 2nd of May!!! Iām absolutely furiousā¦
this dude seems to have a lot of holidays,he must be good sorry to hear this gail carnt your doctor just start you on dr sās favourite meds?
Oh gailm there is absolutely nothing I can say to make you feel better about that, it is simply terrible. Is there another neurologist who can go over your notes who could write the letter in place of Dr. S? I think that is the least the PA could arrange for you. Failing that, would your GP phone the PA to ask what treatment has been suggested because it must be written down.
You must be so deflated and upset right now but if you feel up to it maybe one of those options will work I hope. Can you see or speak to your GP directly to ask for his/her help with this? They have to do something because you have been more than patient. It cannot be allowed to go on any longer so either the PA or your GP will have to step up and help you, which ever one you feel most comfortable contacting first would be a good place to start I think.
I hope you get a good result and can reply that all is well very soon. X
Dr S wants me to stay on the Propanalol for now and run it alongside the Gabapentin. I have three weeks left of the Propanalol. Every time I go to the doctors I end up seeing a different one and they have different ideas of what should be happening. Last time I went I was given two months of Propanalol. I mentioned going back on Gabapentin but at a higher dose and he said that he what he would have done weeks ago, instead of putting me on Propanalol. I donāt feel I can overrule the last doctors prescription on my own, which is why Iām waiting for the letter, as I donāt think theyāll have a problem with what heās written. I donāt want to come across as if Iām trying to do their job for them.
awww I totally understand that as my doctors is the same but this time I went in and said to the doctor I donāt want to keep seeing different doctors I want to see the same one everytime I come so I have a plan in motion because otherwise I get stressed out she totally understood and said I can ring and ask to speak to her anytime they are there to try and help sometimes you just have to be firm āwe know our own bodysā is the propranolol helping?
The PA said Dr S is picking his emails up intermittently and she will ring me in the next couple of days (not holding my breath). Iāve also queried the fact he said ring in two months to book an appointment for three months time. Is that two months from the day I spoke to him or two months from when I actually start taking the medication? He wants the Gabapentin taking a certain way, change of dose after x amount of time etc. I started to try and write it down as he was saying it, but he said it will all be in the letterā¦Iāll have to see if his PA is of any help. Iāll have to make an appointment just before the Propanalol finishes, so if Iām still waiting for the letter I can then at least say Iāve practically finished the course and they arenāt working as far as I can tell. I will then repeat what the last doctor said about going back on Gabapentin and working up to a higher dose. By the time my dose is upped, I should have the letter stating exactly what to do and when. Hopefullyā¦
It takes four weeks to get an appointment, so Iām having to ring and try and get seen the same day. Unfortunately itās the Duty Doctor I see, and that could be anyone. You are lucky you can phone your doctor anytime. I wish our Surgery was like that. The Propanalol doesnāt appear to be working. If anything my balance is probably worse (although not as bad as when they had me on the original Propanalol.) I donāt understand why Dr S wants me to stay on it for now as itās something heās never prescribed for me and I told him it wasnāt working???
mmmmm yes that seems strange what dose are you on? im on 120mg plus the nort!
Iām on 80mg once a day on the sustained release ones. I was on 40mg three times a day of the original ones. I wonāt ever take those again. I was in a right mess.
Lord I am getting confused! Letās just hope the PA does his thing today!!!
If you can manage on Propranalol then stay on it Gail - its working for me and every medication has the possibilty of side effects. Im leading a near normalish life on 80mg - hope you improove too so you can put these bad symptoms behind you ā¦ if its making no difference to your symptoms then maybe time for something elseā¦
Iāve just found some more of the sustained release tablets, so Iām half way through what I was given. The doctor I saw wanted me on them for two months before taking me off them if they didnāt work However when I do finally receive Dr Surenthiranās letter it will say to carry on with them and run them alongside the Gabapentin (but I donāt know for how long). I didnāt hear back from the PA yesterday. I will be shocked if I hear anything today or Monday.
Iāve just found more of the sustained release tablets, so Iām half way through and have been taking them for four weeks. They arenāt making any difference but the doctor that gave me them told me to take them for two months.