Batik

Gabapentin is used for both migraines and epilepsy, so it makes sense in that respect. It can be quite heavy in terms of side-effects and withdrawal, so do be cautious with it, particularly if you come off it. I'm still wondering about the diagnosis, though. It really isn't usual to put someone on long-term medication for migraines unless they are getting migraines very frequently, I think more than two a week or thereabouts. And you're not even sure they're migraines! I think my GP is waiting until I've had the 24 hour ECG before she'll sort out the referral, and that's going to take at least two months.

Any chance you're hypoglycaemic at night? There's a good page about that on Dr Sarah Myhill's website. Try eating a decently sustaining snack before bed and let us know if that helps.

I had a sleep study done 7 years ago and it was absolutely hopeless. The sleep centre was only interested in sleep apnoea and narcolepsy, the sleep lab technicians hadn't even heard of circadian rhythm disorders, and the specialist was utterly uninterested in my results (showing circadian rhythm disorders, insufficient deep sleep, and god knows what else) as I didn't have sleep apboea or narcolepsy. Don't be surprised if yours is similar. What time do you usually go to bed and wake up? They will expect you to be asleep by 11am and will force you out of bed at 7am, so if your sleep pattern is way off that, it may be worth thinking about. They also refused to let me lie down during the day when I had my sleep study, so between that, the sleep deprivation (my sleep pattern was way off back then), the food deprivation (the NHS does not like feeding vegans) and the general exhaustion and sensory overload, I ended up collapsing on the floor. Whereupon the nurses stepped over me instead of calling a doctor. I don't think that sleep medicine is a good area in the UK, at least not if you have something other than, you guessed it, sleep apnoea or narcolepsy. STARS are worth talking to if you want advice on how to proceed next. They may have a recommendation for another doctor.

Right now I don't have any specialists dealing with the possible POTS, it's just my GP. Whom I trust more than random specialists, but while she has a lot of knowledge (she knows far more about PMDD [severe PMS] than the gynae I saw who was supposedly a specialist in PMS), I don't know if this is likely to go outwith her area of knowledge. I'll ask her who will be reviewing it, and probably request that she gets the full report in case we get a repeat of the sleep study situation. 24 hour ECGs just show heart rate, not blood pressure, right? Please note that I'm talking about ECGs here, not EEGs. So whenever I say ECG, that means what Americans call a Holter monitor. Possibly you also call them EKGs for some reason, though I'm not quite sure.

Can't help you on "feeling weird", but I eventually worked out that "groggy" is an excellent substitute for "stoned" when trying to explain how I feel on opioids.

Rheumatology, I think, and contact local EDS or hypermobility organisations to get a specific recommendation. I don't have EDS but my cousin does. I did a poll here the other month about which medical conditions we have, and the rate of EDS or similar was (relatively) sky-high, something like 1 in 6 for confirmed diagnoses and plenty more with suspected EDS/connective disorders, or relatives with those conditions. "that's a good thing because most athletes and dancers are hypermobile, and when you're hypermobile you get less arthritis and injuries" is right up there with, "Hmm, 80/42 is rather low, I suppose. Well, aren't you lucky not to have high blood pressure!" And frankly, the next time someone says that, I'm going to point out that it's about as helpful as it would be if gynaecologist were to say brightly, "Aren't you lucky not to be a man, because that way you're not going to get testicular cancer!"

I don't usually take valerian in herbal tea form, because I'm quite likely to be needing it at night, and my urinary tract does not approve of drinking anything late in the evening. So normally I've taken it in capsules, and have found that it can help a bit with sleep. It had never occurred to me to see what it did to my BP and HR, I've not taken it in quite a long time. Though I did recently discover that taking sedating meds (co-codamol with diazepam) for pain relief knocks my blood pressure through the floor. I later realised that the 75/40 reading would have been artificially lowered because I was lying slightly on my right side, but even so, that won't have lowered it more than 5 or so more than the real reading. So maybe my BP/HR are quite responsive to sedating meds or something. Mind you, I still get all these symptoms despite being on sedating antihistamines. Who knows. Right, with you about the test being relatively non-invasive. TTTs sound a nightmare. I'm willing to go through one because I'm that desperate to get diagnosed, but I am not exactly looking forward to it, and really hoping that it will show up nice, clear, usable results. When you had odd stuff showing up on your ECGs, did that mean that you ended up getting fobbed off by doctors? I have grim memories of when I had a sleep study done. It sounds like it was showing up all sorts of problems with my sleep architecture, such as insufficient deep sleep, but the sleep centre was purely interested in sleep apnoea and narcolepsy, so the specialist just wrote me a sniffy letter about my "insomnia" (er, no, that'll be Non-24 Sleep-Wake Disorder, actually) and didn't even make a follow-up appointment. I bet there was oodles of useful stuff on that sleep study to someone who knew what to look for. Maybe it's useful that I don't have a specialist yet, in that I can't have an ill-informed one scuppering the whole business? My GP's fairly good, is she likely to be able to read a 24 hou ECG well?

Ashley - Can I just say, as someone whose vision has been royally messed up by having ME/CFS, how much I appreciate the way you put in lots of paragraph breaks and put the meds names in bold? *applauds* I'm writing a list of things to ask my GP about, in the hope that we might be able to pursue the mast cell business. I suspect it will all be put on hold until the POTS gets sorted out, but that's looking like it's going to take a really long time now, and meanwhile I could really do with something to take when my lungs feels like they're not processing enough air, or when I'm infuriatingly itchy. I've just noticed that Clarityn (Loratadine) can be bought over the counter in the UK, and is cheap. Would it be safe to simply buy it from Amazon, do you think, and then report back to the GP? Current meds are cetirizine (Zyrtec) and alimemazine (Vallergan), plus a couple of minor things like Vitamin D which shouldn't affect anything.

Magnesium always seems to be getting recommended for people like us, so it's probably not the end of the world that you're taking it regularly.

I've had ME/CFS for fifteen years, I've tried umpteen natural treatments (which all cost a fortune and almost never helped at all), and I've learned enough by now to be very wary of any book talking about 'how this surgeons' patients "willed" their cancer away by thinking positively.' I know you're feeling rotten and desperate to find out what's wrong, hon, but just because it's hard to identify and may be hard to treat (too early to tell the latter just yet) doesn't mean that orthodox medicine is useless and that positive thinking will miraculously cure you. Complementary therapies can sometimes be useful, but they shouldn't be mistaken for more than they really are. Do you have any reason to think it's Lyme? Were you bitten by a tick, or lived in an area where tick bites were common? I've seen a lot of people with ME and similar illnesses desperately searching for any other condition it might be, any treatment no matter how shady it may sound, just in the hope that they can be treated. There's a point at which this is healthy, and there's a point where you're just putting all your time, money and emotion into false leads. You sound like there's enough investigation going on right now that you are probably OK with pursuing the neurological route, slow and frustrating as it may be. In similar venting news, I've just realised that it's probably going to be 2 months at least until I get a 24 hour ECG (Holter monitor), and that my GP won't even try to refer me to a specialist until after that, so it may be 8 months or longer until I even get a diagnosis of POTS, let alone treatment. And right now I am flailing about trying to work out shortcuts too! Pain in the backside, isn't it.

Lyme disease? Eastern vs. Western medicine? Are you sure you've not stumbled onto the dodgier websites, by the way? I know there are major problems with all convenational medical systems, no one's perfect yet, but I've heard an awful lot of nonsense talked by people who claim that Eastern medicine is the only way to go. Also there are some conspiracy theories out there about Lyme disease, I'd be cautious there as well. While this particular med may not have been the best one for you, generally it sounds like your doctors are on the right track, and it may well be absolutely normal for things to be rather muddled at this stage. That's why I suggest talking to the migraine and epilepsy folks, they will know far more about how all of this works.

In fairness, that gynae was the only doctor I've seen who's tried that route. Though I did once have a GP who, when I said that I had migraine, wanted to put me on the pill to check out whether it was really menstrual migraine. To which the answers were: a) yes, we already know it's menstrual migraine, I've been getting them since I was 15 and the menstrual pattern became very obvious once I gave up dairy at 19; b ) you're not meant to put migraineurs on the pill, it increases the risk of stroke too much. I know that sometimes it's a good idea to put a patient on a drug as a way of ruling out conditions, or for other reasons early in the diagnostic process, but on the other hand, some doctors just aren't very good, I think! I would suggest hunting down patient associations for both migraine and epilepsy and having a good chat. No idea about the American ones, but the UK ones have helplines. In fact, if you like, you could call the UK helplines. Migraine Action +44 116 275 8317 Mon-Fri 9.30-4.30 GMT. Epilepsy Action +44 113 210 8800 9-4.30 Mon-Fri (and they specifically list the international number, so are evidently happy to take international calls). I have spoken to both and they are good. They also have email addresses you can contact on their websites, and I know that Migraine Action has a really good team of specialists they can ask for advice. If you do try the English places, don't forget to look up the pharmaceutical names of any meds involved, as the brand names aren't always the same across the pond. Nortriptyline is the pharmaceutical name, so you're OK there. It's usually quite cheap to call the US from the UK these days (and far, far cheaper than calling mobile phones from landlines), so I hope it's affordable from your end as well. I'm posting this at 13:51 GMT if you want to work out the time difference.

In what sense do you mean "it couldn't be easier"? I gather that it's straightforward to undergo, although the effort of two trips to hospital is enough to be worrying for me. I'm just concerned that it will be yet another test which doesn't pick up the problems, or where the people reading it don't understand what to look for and decide that everything is normal when it isn't. The home TTTs off antihistamines have been weird. The first one, yesterday morning, was exemplary, with a nice rise of 37bpm after 4 min. However, I took another late last night, a couple of hours after I'd had some valerian blend tea. My HR only moved by 5 beats! BP jumped around a bit, nothing too exciting. I took another this morning, after another appalling night's sleep and on an empty stomach, and it was little better. This is very strange, since usually I get some sort of HR rise, along with breaking out in sweat, getting breathless and so forth. Any ideas? I'm going back on the antihistamines anyway, I can't take more disrupted sleep like this without a very, very good reason, and the itchiness is getting on my nerves. So that wasn't as useful an experiment as I'd hoped.

Having read through your other thread, it definitely seems a bit early in the diagnostic procedure to be putting you on preventative meds, especially since they still haven't ruled out epilepsy. I'm wondering whether the doctor is trying to diagnose you by plonking you on their pet drug to see what it does to you. I had a gynaecologist do that to me when I was trying to get diagnosed with PMDD (bad version of PMS) once. She wasn't interested in running the usual diagnosis, which my nice simple symptom/period diary would have made beautifully clear. She just wanted to put me on Cerazette, and when I did badly on Cerazette (as do most people with PMDD - she really shouldn't have been handing it out like that), she sulked and decided that I didn't have PMDD after all. Thankfully my GP had more sense, made the diagnosis without trouble, and patiently tried me on meds, working with me and listening to my responses, until she found something that worked. Anyway, my migraines are of the boring variety known mainly for causing pain rather than fancy neuro stuff, and I don't know anything about epilepsy, but I'd proceed with caution here and maybe get a second opinion.

Headaches too? I've never been able to find true raspberry leaf in teabag form, and it's such a hassle using the loose leaf stuff. And then after all that, I never noticed that it made the slightest bit of difference. I went for the valerian blend in the end. It's largely lime flower, and that's meant to be good for headaches too. I was partly led by my nose, as I think that sometimes your nose is indeed a good judge of what you need. I did the same with essential oils too, and there is now basil on the burner and my nerve oil blend (think it's currently clove, peppermint, basil, lavender and chamomile) has been massaged into my head and shoulders. Electric heat pad, here I come! Though I still suspect I'll be breaking out the painkillers in half an hour or so. Do you find that licorice tea has an immediate effect when the POTS is bad, or is it more of a long-term thing? I am hopeless at making up tea blends to take twice daily on a regular basis, or what have you, which is why I tend to go for capsules or similar in such situations. I have a health food shop order being processed right now, and I'm wondering whether it's worth asking them to add a box of licorice tea (probably the plain stuff), though I'll feel a bit cheeky as I've already amended the order once. It's not my fault that they suddenly started to stock black garlic and I didn't notice the first time around!

Yogi do all sorts of lovely licorice-based teas. I haven't had that Egyptian Spice one in a while, but it's a good choice. I now appear to be getting a menstrual headache if not migraine, so I will go and stare thoughtfully at my herb teas. What do you reckon would be a better bet, of the ones I have listed? Mint doesn't do anything for headaches for me. Probably the valerian, I suppose. I'm trying to stay off pain meds while I'm doing these trial days without antihistamines to see what it does for my HR and so forth.

By the way, has anyone else found that their menstrual cycle has changed when they're on antihistamines?

I'm on cetirizine (Zyrtec) and alimemazine (Vallergan, I think). They're not being particularly sophisticated about it, I think they've been throwing them at me at random to be honest. The dermatologist was utterly uninterested and just sent me back to my GP with a general recommendation to try various combinations. The sky fell in on me two weeks later and I've been dealing with a lot of other stuff since, so my GP doesn't want to mess with my meds until everything's settled down. I'm currently trying a day or two off the antihistamines to see what it does to my HR and so forth, and it's interesting to see how it's affecting me. My arm keeps swelling up if I try to leave the blood pressure cuff on, for starters. Plus the whole lack of sleep and mad itchiness, of course.

Either! Something that makes you want to deal with it on the spot, rather than ongoing things like always being dizzy.

Any suggestions about useful things in teabag form for when you're feeling cruddy? This is for acute use I mean, rather than long-term use (at which point I personally prefer capsules or similar). So far I have: * black tea (or white tea, or green tea) - caffeine is a bronchodilator, so it's good for breathing problems. * mint tea - can be handy for nausea. * ginger tea - also handy for nausea, and meant to be warming. * valerian blend tea - tricky to find one which doesn't taste absolutely vile, but I quite like the Dr Stuart's blend. Can be useful for anxiety or jitteriness. At the moment, I keep heading for a very nice ginger tea blend. It's 51% ginger, 28% galangal, 17% licorice root, and 4% turmeric.

misstraci - how many of these alleged migraines have you had? As far as I am aware, they don't try people on daily anti-migraine meds unless they get lots of migraines on a regular basis. This all sounds rather odd. Which country are you in? I know that in the UK, the Migraine Action Association are great for talking to about this sort of thing.

Interesting. Though now you've all got me worried that a standard 24 hour ECG won't be enough to show up the problems. I haven't been tried on compression stockings yet, though the last consultant who saw me in A&E (ER) muttered something vague about them. Does anyone know if they're OK if you have dermographism? I had them on when I had my gallbladder out in March and was OK, but then the itchy skin thing does vary.

Tell me about it! Or more to the point, please tell that dermatologist who wasn't remotely interested in investigating mast cell problems, and told me that dermographism doesn't cause itching. I forgot to mention nausea (though I've just edited the previous post accordingly). Another weird thing from being off my antihistamines today for testing purposes, as well as sleeping very poorly last night: my left arm must be a bit swollen, because the blood pressure cuff is fitting more tightly than it usually does (I just leave it fastened and slide it on and off). I wonder what that's about? Anyway, my current plan is to get to a certain POTS specialist and then hope that she can follow up the mast cell side of things as well as the POTS side of things, or at least refer me to someone appropriate.

Could you explain more about this? Do you get headaches of any sort? Do you get the other symptoms of migraine without the headache?

I get stuck on this. People always make vague comments like "oh, you get allergic-type reactions" but I'm never sure what that's meant to cover. I get these symptoms on and off generally, but standing up brings them out in force: getting very itchy, suddenly sweating, nauseous, temperature all over the place (hot and cold at once is always entertaining), tight chest, breathing problems (sometimes hyperventilation), and of course, blood pressure, pulse pressure and heart rate bounding about all over the place. As far as I am aware I don't come out in hives, though I have been diagnosed with dermographism so my skin turns red in response to pressure. I've also found that being on two antihistamines at once stops my pelvic pain, which suggests a mast cell issue. Does this sound like a response suggesting a mast cell problem?