Off to see Dr Silver this evening

Specific Illnesses & Conditions VM/MAV
41

Hi everybody, sorry I haven’t posted for a little while. Hillsta, in response to your question, I would say I don’t feel quite right 24/7. Sometimes the dizziness is intense, other times not so much. I find that my symptoms change constantly. Sometimes I feel like I’m rocking forwards, sometimes backwards, other times like I am swaying. I also get a sensation, when I turn my head, that the images are one step behind if that makes sense?! Kind of in slow motion!! I have got to say since being on the propranalol i am coping much better. There are times when I don’t notice any swaying etc and when it does hit hard I don’t feel quite as frightened as I did.

Back to Dr. Silver :slight_smile: He writes a very detailed letter describing symptoms, moves on to his opinion and which preventative therapy he feels would be beneficial. He also included lots of information about MAV in general. I found it interesting to hear his reasons about the failure of preventative therapy. He states that this is most commonly due to ‘drug intolerance, even low dose (particularly if sedation occurs as sedation appears to stop the drugs from working), insufficient dose achieved or inappropriately short duration of therapeutic trial, reintroduction of acute attack drugs or caffeine’.

He also went on to say that if a preventative has had partial success and has had some positive effect then it can be helpful to add in a second line agent. With regard to non drug measures he suggested occipital nerve blocks or vagal nerve stimulation. Also, Botox if required. However, please note that these suggestions were made with me in mind so may not suit all people.

General tips:
stop smoking! ( 2months now :))))
Helpful to gradually increase exercise on a regular basis.
Women, if experienced migraine aura) avoid using oestrogen containing preparations below the age of 50.
8-9 hours sleep per night, same time to bed/waking.

To treat acute migraine attacks:
Domperidone 20mg up to 4 times a day.
Avoid anti sickness drugs e.g. Buccastem, stemetil, cyclizine
Beginning of attack, drink 1-2 pints of water.
Menthol strips
Massage to neck, temples, scalp.
Rest
Ice or heat packs

I hope some of you will find this helpful. A lot of these tips the seasoned migraineurs will know about but if you are a newbie like me, it may just help a little. :slight_smile:

Hugs to all of you. We will beat this together :)) x x

42

Little update: am now taking 160mg propranalol. Am coping ok, plan to up the dose now to 240mg. I have not experienced any side effects apart from feeling dizzy/faint when I stand up after sitting. I have often experienced that and it doesn’t really bother me. Apparently if this happens it doesn’t contraindicate use of the propranolol.

Now a little rant! I can’t believe how poor some GP’s knowledge is of this condition. Thank goodness Dr. Silver writes a very detailed report!! The surgery I attend is particularly hopeless, there has never been any continuity, it is always a locum. With this condition the one thing I feel I need is continuity of support. I am having to explain the same thing over and over again! Grrrrr! I am going in tomorrow to explain that according to Dr. Silver it is time to up my meds. Surely isn’t this their job!!!

Sorry for the rant guys, I have had enough though. I requested a sick note last Thursday. Went in today and they’d lost it!!! Have to wait another 48hrs!

On a side note, I had some blood tests ordered by Dr.Silver. Apparently I need to see the dr as my serum folate results were abnormal. Folic acid I think. Anybody else had this?

Hope you are all doing ok x x x

43

Kathy
Just a ‘catch up’ to say pleased to hear how well you’re doing on the Prop. Sounds like a good guy. Must be awful not being able to see a regular doc. Don’t you have any smaller med centres where you can at least see one or two docs? Dr Silver seems to be very thorough - that’s a blessing! Keep us posted re the serum folate levels - could be interesting.
Barb

44

Hi Barb, sorry for the huge rant last night! I honestly had had enough! It has been like this for a long time, it’s not just a one off. It’s always locums! Obviously they are quite able to do the job but it is rather difficult as a patient! I am going to try to find another surgery.

Yes, I will post what happens re: serum folate result. Hopefully it means just taking some tablets and it will be resolved. I am doing ok with the propranalol. I do feel that I am better than I was but I don’t know how much of that is down to feeling less anxious. I haven’t woken up swaying for some time so that’s good!! I realise that the meds aren’t supposed to kick in for 3/4 months but I think I have felt some benefits :slight_smile:

I hope that you are doing well :)) x x x

45

Kathy I can sympathise about the GP situation. Everytime I have needed anything have had to ask and chase it so many times. Also they are not always very willing to do referrals etc.

So good you are seeing benefits from the Propranolol! There are a couple of people here - whosthatchick and Anna31 - who have just started on it, so you may be able to encourage them with your improvement. I have heard that migraine and deficiency in vitamin B and folate are linked so that may well be why you have a problem. I think mine were ok but I know Dr Silver does always want to check that with patients. Serotonin is also linked to vitamin B so a problem with one may link to a problem with the other. Maybe in the future you might also benefit from one of the migraine meds that affect serotonin. Just a thought… x

46

Hi Jem :slight_smile: I will have a chat with the other posters re: propranalol. We are, after all, in this together!
So, the latest installment! Went to the drs today, new dr so she had to read the letter (that in itself took a while!) cut a long story short I have low folic acid levels and need to take iron/vitamin c as recommended by dr. Silver. In his letter he writes that if it is under a certain number it should be treated, even if it’s only borderline.

My blood sugar was low, I had eaten so the dr was a little confused by that. Trying not to worry about that though. She said it could have been down to me feeling anxious about the test.

I am slightly confused by one thing in Dr Silver’s letter. It says to try and reach the highest effective tolerated dose, increasing dosage every 2/3 weeks. Well, how can I tell if it is effective as they supposedly take 3/4 months to work their wonder?!! How do I know in that short space of time whether it is doing me any good?!! I have been ok on 160mg and am now moving on to 240mg. My dr however didn’t seem too keen on this idea. She said that we had to be careful as we don’t want me conking out! My resting heart rate was 54. I am guessing this is ok?!! I don’t fancy conking out myself! Has anybody any experience
on this dosage?

Rather confused

Kathy x x

47

Hi Kathy,

I have been thinking the same thing myself about increasing propranolol every 2-3 weeks but if it takes up to 4 months for maximum effect you will always end up on the highest dose. I got the distinct impression my GP wants to ‘go slow’ too so will see what she says when I ask to go up. I don’t want a battle with my GP at this stage. She even mentioned Amitriptyline which isn’t even on my list of recommended meds. I had to say it was not recommended because of restless legs but really feel I shouldn’t have to be telling my GP what to do. I wasn’t sure she had bothered to read the whoe letter.

Kath

48

Katherine, I have had exactly the same experience. To be fair the dr I saw today was a very pleasant lady who did take the time to have a little look at the letter. I am just rather alarmed about how little knowledge there seems to be about this condition. I understand that a gp would not be an expert on this but not to have even heard of it is a bit worrying! I got asked today whether or not Dr Silver thought it an ent problem!! If there was any continuity at the surgery I go to I wouldn’t have had to explain it all (again!) Here I go ranting again!! It’s just hysterical though, I go to finally pick up my sick note, it’s the wrong date, we discuss moving up to 240mg, I come out with a prescription for 80mg propranalol, completely forgot about the other 160mg! More fool me for not checking whilst I was there.

My friend is a gp so going to have a chat with him this evening as am slightly confused with all the meds I’m on now. He’s not a mav expert but maybe he can give some insight as to what Dr Silver means about how to go about increasing the dose. If I find anything out ill post it here :slight_smile:

Kathy x x

49

Hi Kathy,

Yes, it would be interesting to hear another opinion on increasing the dose. I always get really frustrated going to the GP, not looking forward to lots of appointments over the coming months to sort out meds. They should try living with these symptoms.

I think GP’s have limited experience treating migraine and are normally limited in what they can prescribe so they probably see the dosages in the letter as very high. Well if that is what it takes then so be it!

Kath

50

Hi Kath, just had a chat with my gp friend. He has just read the letter from Dr Silver. With regard to the bit we don’t understand about increasing the dose he said that the aim is to get to 240mg. So yes, we will probably end up on the highest dose if we tolerate 160mg well. If it doesn’t agree with you you need to reduce the dose.

Hope that helps :))

Kathy x x x

51

Thanks Kathy, really appreciate that. I had read elsewhere that the dose for migraine is somewhere between 160-240mg. Fortunately I’m not having side effects at 80mg. Good luck at 240mg.

Kath

52

— Begin quote from “Jem”

Kathy I can sympathise about the GP situation. Everytime I have needed anything have had to ask and chase it so many times. Also they are not always very willing to do referrals etc.

So good you are seeing benefits from the Propranolol! There are a couple of people here - whosthatchick and Anna31 - who have just started on it, so you may be able to encourage them with your improvement. I have heard that migraine and deficiency in vitamin B and folate are linked so that may well be why you have a problem. I think mine were ok but I know Dr Silver does always want to check that with patients. Serotonin is also linked to vitamin B so a problem with one may link to a problem with the other. Maybe in the future you might also benefit from one of the migraine meds that affect serotonin. Just a thought… x

— End quote

Jem you are so sweet! Only just saw this! Thank you for thinking of me x

53

Glad to help WTC. I knew you wanted some positive stories on Propranolol and I have read Kathy D is doing great on it. As you know I chickened out early with the beta blocker as I hate it when things go worse but Kathy’s experience shows beta blockers do work for some people with VM! x

54

Jem’s a star. We’ve been in touch, think it’s very helpful to talk to people trialling the same meds. Especially when they have positive stories!!! So hang on in there WTC, as you know I’m doing much better on these meds and I hope you find some relief too. x x x