Hi Anne,

Just wondering how you're getting on with the propanonol. Can you remind me what dose you're on.

I am having a tough time at the minute. I think it's down to the drug I'm taking for my stomach - domperidone - which, although it helps my stomach can cause monster headaches - which I think it is. It's tough as there's no other drug (apart from even stronger ones) which can help my stomach condition. This is making it very hard to judge if the pizotifen is doing anything for me - and anyway - from what I know, I'm still on too low a dose to make the difference. Although I did up my dose a few days ago. The one concern I have is that my anxiety is through the roof at the moment, mainly cos I'm feeling so bad, and I've pretty much had enough of feeling this anxious. I am thinking of swapping over to propanonol, starting at a much lower dose than previously - half the lowest dose, and trying to treat the migraine and the anxiety that way. Two birds with one stone sort of thing. Getting rid of anxiety could also help my stomach, so it'd be three birds. Then again, I didn't have exactly a great time on propanonol previously.

It would be great to know how you're getting on with the propanonol, did u lower the dose? Are u still feeling as bad? Whatever, I hope you're doing ok, Anne,

best,

hbep

Hi Hbep. Sorry you're not feeling great at the moment.

I have to confess that I've binned the propanolol. I called my doctor and she said to cut them in half, which I did, but that wasn't really any better. It just seemed to be having a cumulative effect. After a fortnight on 40mg and about three days on 20mg, I was at the stage where I could barely function at all, spinning several times a day and my sleep was so disturbed that I was in pieces and had a constant headache. I 'forgot' to take one dose, and the next day I felt so much better that there was just no decision to make, and I've not taken it since. I may try again on the half dose and see if i cope better if it's less of a shock to the system, but I've got a cold at the moment so I'm not going to mess with myself until that goes.

Can't see my GP until after Christmas, but hopefully she'll offer me something else. It's a shame in a way, because they did knock my anxiety out totally, but everything else got worse.I'm going to hang onto them, and try quarter tablets to help with really anxious situations (like Christmas shopping!).

What dose of the propanolol were you on before? Try halving it - you might be OK. Hope so!

Ann xx

Hi Anne,

Don't blame you for binning the drugs, sounds like the right decision. Dizzyblonde had a similiar experience, she felt terrible on propanonol. She went on pizotifen and it did the trick. IMO There's absolutely no point in toughing it out with a drug if the effects are that bad - my gut feeling is it's a good indication they aren't going to work. What did LL say about another drug? They normally move you on to a different one if you don't get on with the one they've prescribed.

After reading this, and remembering I had a bad time with propanonol, I might just stick the pizotifen for the moment. I tried upping my dose, then lowered it. I felt dreadful, but to be honest I already felt dreadful so it's hard to say if the increased dosage contributed. As I said above, I think it's down to the stomach drugs that I've felt so awful. I've now had a two day pounding headache on the back of 5 days of dizzininess. Sigh. It seems to have let up in the last hour a little, so here's hoping.

best,

hbep

((( hbep )))

Misersable old thing this, isn't it? You're right though - gut instinct is rarely wrong when it comes to medications.

Was dizzyblonde feeling constantly spaced and dissocaited with MAV, do you know? Did the pizotifen sort that? I'd put up with *anything* if I could get back to a normal state of consciousness!!

Hope your headache shifts soon. The one thing that usually works for me is 'boiling my head' - lying back in a bath as hot as I can stand it.

Ann xx

Hi Anne,

And a hug to you too.

Yup, this stuff is the pits. I actually spoke to Dizzyblonde last night, mentioned your propanonol experience, she said her experience was the same. Nightmares - actually hallucinating - bed ridden. She stopped and started it again to see if it was definitely the drug, and in her case it was. It's a shame, as for a lot of people it's meant to be one of the least side effect ridden and most benign drugs. Just shows how different responses can be.

Dizzyblonde and I would joke about the 'Being John Malkovich' effect. Don't know if you've seen the film, but people find a portal in to John Malkovich's head. They can climb inside his brain and watch the world through his eyes. Basically we talked about having this as feeling like that, like you're trapped inside your own head, looking through your own eyes, but from a greater distance - a locked in feeling. It's accompanied by that looking through glass sensation. Like there's a goldfish bowl on your head. So if that's what you mean by the disconnected feeling, then yes, she definitely got that.

I have experienced a different disconnected feeling, like I'm locked off from my thoughts and feelings. It's a sort of 'who am I? ' feeling. I attribute this second feeling (which is, for me, just about the worst feeling in the world) to anxiety. It happened at the height of the dizziness, when I was undiagnosed and extremely distressed. It's happened since then, most recently, when I got a violent vibration in my ears again, which freaked me out, I couldn't sleep, and was v. anxious. Obviously it's totally tied in to the vestibular problems and happens as a direct result of them, but my gut feel is that second feeling, for me, is an anxiety effect. I managed to get rid of the first bout of it by reading 'Hope and Help for Your Nerves' by Clare Weekes. Dizzyblonde only got a similiar thing when she experienced some depression. She went up on her pizotifen dose too fast - hoping it would make her better quicker - and became depressed. Depression is a rare side effect of pizotifen. It passed, her body acclimatized to the pizotifen dose, but she said she felt very cut off then.

I'm afraid the hot bath thing actually aggravates a headache for me. It's so hard on the headache front as there doesn't seem to be any one thing that works for everyone. It's all so individual. I did, however, read something that really made me sit up and listen yesterday. A number of people had been prescribed 400mg of magnesium a day for their migraines - not just by alternative practitioners but by neurologists. It seems for quite a few it's incredibly successful. I do know that magnesium deficiency is sometimes linked to migraine. It's a long story but I was cured of M.E with intra muscular magnesium injections yrs ago by an immunologist. I am even considering having the injections again, although it'll be expensive and a hassle to arrange. Apparently they can sometimes halt a migraine with a mag injection. Anyway, the stupid thing is I have been remiss about doing the much simpler thing which is taking the supplements that have been sitting in my cupboard. Thought I'd mention this, as let's face it, it's a no lose situation. A big bottle of mag is about the same price as a prescription, and apart from diorreah as a possible side effect if you take too much, it has no down side. Apparently you should avoid magnesium oxide as it's badly absorbed. I take the one made by Nature's Plus (200mg tablets) as apparently (No idea if this is correct, but hey) it's the purest form. Thought I'd mention it as you might want to try it.

I am so tired of this crap. Did LL tell you to do VRT as well as the drugs? Are u going to phone her about another drug? Or did she tell you to sort it with your GP? Myheadache is still lurking but has died down a lot, I have a big important meeting tommorow - am trying to keep my anxiety about this under control but it's almost impossible. I am so worried the headache will descend again and I'll be not only dizzy, but also in pain. Having this is such a disaster, you've almost got to laugh.

best,

hbep

Hugs - Hbep... I know how you feel. Last night I got so upset/anxious thinkign about my life - you are right you sometimes feel like laughing! We will ALL get there. Hang in there xxx

Hi Anne,

Dizzyblonde and I would joke about the 'Being John Malkovich' effect. Don't know if you've seen the film, but people find a portal in to John Malkovich's head.

Yes, I've seen the film (repeatedly - I'm unashamedly obsessed with John Cusack!), and that's a really good way to put it. It really is as if you're somehow looking out through your body rather than being in it. I wish the doctors could climb in and see what it feels like sometimes - five minutes of what we experience daily would soon get them scrambling for a cure!

Veeeeery interesting about the Magnesium. I shall look into it and see if I can get some - has to be worth a try! I actually took a quarter of a propanolol last night - my OH convinced me to give it a try for a few days - and touch wood I slept OK and am no worse than usual today (apart from a horrible chesty cough). If I can cope with a quarter-dose for a few days, at least I can go back to my GP after Christmas and say 'look, I *did* stick with it', but I'm desperate to get off it and try something else.

I'm going back to London on 20th Jan for my VRT appointment. I'll be glad when I can start that - at least I'll feel as if I'm *doing* something. I still think it's going to be the immumnologist who really cracks it, though - I feel so infected all the time (I've got an 'official' diagnosis of M.E. as well) that I'm sure I must have some lurking virus or post-viral shenanegans somewhere in my system. It's amazing that magnesium cured your M.E.! I wonder if there's any sort of link...? :confused:

Hope your meeting goes OK!

Ann xx

Hi Ann,

The magnesium link to ME is that it is purported that some people with the condition don't have M.E, but a chronic deficiency in magnesium. I wish I could remember the name of the woman who wrote the article on this. I'll try and find it - I can give you her name, you'll find it on the net. It seems in my case that may well have been true. He also treated me with heavy duty drugs for candida. It's entirely possible the immunologist you see will know something about the M.E, magnesium link. It's certainly worth mentioning. Like I said, I'm very tempted to have the injections again, in case my two bouts of illness are linked. Maybe magnesium is the connection.I just saw something written by someone on another board which said exactly the same thing - he's been given propanonol and 400mg mag a day for migraine by his neurologist. Who knows, lol, maybe we'll start downing magnesium and be miraculously cured - wouldn't that great.

Glad you're getting to the VRT department in Jan. I guess I really ought to be doing my VRT still, hmmmm, lol. Sometimes I don't want to do too many things at once so I know what's affecting me. At the moment I have so many things going on - 3 drugs at once I have no idea what's causing me to feel crap. I suspect one of them is the culprit.

CL, hope you're feeling a bit better, try not to worry, easier said than done.

best,

hbep

Hi you guys,

that interesting about magnesium. Ann, Ive also had an official diagnosis of ME about 3 years back. I started taking magnesium about a month ago but havnt noticed any difference, although I think it is only about 150mg so maybe not enough. Sorry you are both not feeling so good on your meds at the moment. You both sound like me, very med sensitive. I havnt taken the cipramil yet, its a bad time of year for starting meds, when there is so much to do coming up to Christmas time and wondering if the tablets are going to make you worse, but I suppose there is never a good time really. Hope you both feel a bit better soon,

Chris x

Hi guys,

Yes, v interesting on the mag front. I started taking mag supplements (hbep you know this) earlier in the year when I read on the digestive disorders board here that mag could help reflux. I think it did for me. I continue to take a 400mg tablet daily, along with the small 12% daily recommendation that's included in my multivitamin. I read a lot about mag earlier this year, and with the help of the board here discovered that supposedly the "chelated" varieties are easier to assimilate into your body. Part of the problem with most people and mag is that they don't get enough through diet, and even when taking a supplement, there's only a percentage of it that actually gets absorbed. There's a high percentage of the American public (sorry don't know the stats for you Brits) because of crummy diet that suffer from some level of mag deficiency. That's not to say you should go crazy with mag either. Overdoses of it can cause weird side effects too.

Cheers,
T

This is v interesting...I took some mag for a while at the start of this as read it was good for dizziness....also good for neck/head tension as relaxes muscles. One thing I do notice- if I do take it before bed (havent done this for ages) it sends me straight to sleep...HMMM might go and dig some out. Could do with a sound night sleep.

I think I may try some mag and see if its gets my energy up - so how much would u propose and are there any risks with taking it for a while? Guess nt if its not v well absorbed? Prob a bit like Vit C.

Also read somewhere recently that mag v good for migraines so perhaps it would be worth a try Hbep??

Thx for your words Hbep - sorry im acting like a frazzled bean - normally such a calm, collected person but sometimes this head monster beats me and I just want to scream. Must hold it together for LL :)

xxx

CL,

Like I said in my post, I'm not sure if England has a different set of dietary guidelines, but in the US the recommended daily allowance of magnesium is 400mg. You should do some web searches on it because you can also read up on what can happen if you take too much.

T

Apparently....

Foods that contain Magnesium include:

- Soy beans
- Nuts (eg. almonds)
- Yeast
- Wheatgerm
- Wholewheat flour
- Beans
- Brown rice
- Oats
- Apples
- Figs
- Lemons and grapefruit
- Bananas
- Yellow corn
- Leafy green vegetables

Optimum Intake of Magnesium
Magnesium levels may be depleted by unbalanced diet plans, like very-low-calorie diets, very high fiber diets, high-fat diets, high milk intake, use of the birth control pill. Magnesium works best in conjunction with vitamin A and calcium.

Magnesium Supplements
Most multivitamins contain magnesium. Dolomite (containing a perfect balance of manesium and calcium) is a good specific supplement, and can be purchased as magnesium oxide. Do not take supplements after meals as magnesium neutralises stomach acidity necessary for proper digestion.

(edited to add that I'm so glad an example of a nut was given, or I'd have been stumped... ;) )

Thank you - I eat a lot on that list being Vegetarian but I have checked out the daily allowance and it is 400 so I took a tablet last night (it is chelated mag, calcium and zinc) as have heard they need to be absorbed together...(well, it helps) and its useful to have the same amount of all 3?

xxx