Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

Thank you. I think we have all had our own reasons for being 'quieter' than usual.

I hope everybody has a good bank holiday weekend.

Took DS for a good long bike ride (22km!), as DD is away (she doesn't have the stamina).
He did really well, but was definitely tired at the end.
He's still having seizures, I've seen at least one a day, and he's been on full dose Epilim for 9 days now. After BH I'll have to call the Dr. I hate calling doctors, why can't anything ever be straightforward with DS?

In fine, just super busy as always, and my joint pain is getting worse and worse. I got overtaken by an octogenarian in the shop today. Which was rather embarrassing, seeing as she was more than double my age.

I think now that I have my aids from the equipment service, it's hitting me just how limited my mobility really is.

I'm considering buying a walking stick for when I don't have the pram to lean on...

Oh, and I had to try to describe my post-sz headache on a questionnaire based more around migraines for the GP. Which was fun - I explained that it only happens after a sz or when I've had a number of 'blank periods' in a day. It is ALWAYS in the left top front of my head.

It feels nothing like a migraine.

I was also asked to describe the pain - the best I could do was this :

It's like a sharp pain and a throbbing pain all at once, and it feels 'fizzy', like snsll bubbles of pain are popping inside that hog of my head!

Hello, sorry for being awol. Been mostly hiding out in 'the doghouse' working through the loss of oldgirl and trying to deal with lurcherboy's ensuing separation anxiety.

Couthy, it sounds like you have such a lot on your plate at the moment. You are an awesome mum and don't let anyone tell you any different. Also, hope ds1 is doing ok.

Leonie, it sounds like things might be shifting for you with the sleeping and motor seizures. Are you any further on deciding what to do about the Topomax?

InMySpareTime, hope you managed to get through to the docs and get some answers re your ds's medication.

After some truly horrendous migraines and lots of ice-pick headaches, my neuro stuff settled down when my period ended again - until this Sunday. We had a day out at a VW show, too much sun, stupidly managed to get dehydrated and did a lot of walking and then had the weirdest, scariest night I've had for a long time. Starting in the small hours, lots and lots of 'building' sensations coming in waves, but never quite making it all the way to what I would actually call one of my full-on episodes - so no tingling, pain or yawning etc. It was relentless though and left me so exhausted I had to stay in bed all day on BH Monday. Monday night was similar, but last night I was in such a lot of pain with my bad foot/ankle that I took cocodamol at gone midnight, which meant I slept for a longer chunk of time and didn't wake up during my episode 'window', iyswim.

I have started to question myself and think it must be panic attacks, so spent ages reading up about panic attacks, particularly nocturnal ones and am none the wiser. Some of the symptoms/signs of a panic attack are there, but no sweating, hyperventilating or feeling like I am going to have a heart attack/die etc. I am able to stay calm and rational and 'stomach breathe', rather than shallow breathing and whilst I don't like the way it feels and it does frighten me it's not the same sort of fear as a panic attack. (I used to have full on hyperventilating panic attacks as a teenager and can still feel vividly remember the very real need to escape, whereas with these episodes I just want it to stop so I can get some sleep.)

Am no further with neuro appointments. Had the letter saying the Amb EEG was cancelled and I would be reviewed in the outpatient clinic to ascertain an alternative management plan - then zilch.

I am almost beyond caring now. Just getting on with my life and if they call me in, they call me in.

I have given up keeping a diary. I am so p'd off with the whole thing and they either w/don't listen or w/don't understand what I'm saying anyway - so what's the point.

Meantime I am doing what I can to try and improve my general health by eating better, taking my supplements, exercising more (although not enough with this blooming foot) and until Sunday night had established a better sleep routine and was sleeping better.

We're getting there thanks. Thought I was doing much better, till my Mum mentioned oldgirl when we were in a cafe today and I started crying.

We've decided we will get another rescue dog, a pup in fact, but not for a while - probably in September when dd starts school full time, unless one comes up that I can't bear not to have before then. Definitely not just yet though - it's still too soon and we have an uncharacteristic amount of busy weekends between now and mid June. Dh wasn't at all keen at first, but seems to have either given up fighting or come to terms with the idea now. (Nothing at all to do with all the pics of cute lurcher puppies I keep showing him. )

I am really pleased to hear you're feeling so much better. I've heard before that thyroid problems often mimic anxiety symptoms. Mind you, finally being taken seriously and treated with some respect by the medical profession will also have helped with that I suppose.

I was just talking to dh re panic vs seizure/episode, but I just can't put satisfactorily into words how it actually feels when it happens. It's a really physical feeling, but so unlike anything I've ever experienced before that I just can't explain it. I think my previous descriptions of it are too simplistic, because I tried to explain it in a way that someone else might be able to relate to, but looking back, those descriptions aren't really accurate. Not sure how else to explain it all though.

Dh said that when it was happening on Sunday and Monday nights you couldn't see it at all in me and he only knew it was happening because I told him. Surely, if it was panic, it would be obvious in my body language and facial expression at the very least.

Hi everyone.
So sorry I haven't read the whole thread but ds1 is away in a residential with school (I know!!....) and I am feeling bereft without him :(
Added to that ds2 who is a newly dx asthmatic is not well and I am debating whether or not to take him to the gp tomorrow...
My voice has gone again (2nd time in 8 weeks) my ear is still not right (had an infection 3 weeks ago) and I have a weird pain in my right underarm/breast area.
Sigh.
I am ready for the glue factory I think :(
Is any of the above worth going to see the gp about do you think?
I am sooo sick of being told "it's a virus, it's just something that will get better in time or the old standby...I don't know what it is"
I am like that too leonie.
Ds2 starts school in sept and I may well spend the first 3 months in bed :)

I tried phoning the epilepsy doctor, but couldn't get past the secretary, I did manage to get a rescheduled appointment for the 24th, so that's something anyway.
I haven't noticed any seizures today or yesterday, but this could just be because DS is at school, I don't see much of him during the week.
You ladies are doing so well with such a range of medical and family issues, I feel lucky that at least the rest of the family is relentlessly healthy, so I can focus on DSs medical needs.

Hi Badvoc, he'll be fine - but you already know that. I've had both my boys go on residentials now and missed them both terribly, despite enjoying the relative peace with only 2 dcs in the house.

I would go to the GP about your symptoms. If it's been going on for 8 weeks they need to check it's not something bacterial that needs antibiotics.

As for ds2, my GP says if in doubt, bring him in, about both my boys - ds1 who was dx with asthma last year and ds2 who has a red flag on his notes due to several episodes of pneumonia that presented atypically. I think they usually prefer to err on the side of caution when children are involved. Twice I've taken ds1 in and found out he had a chest infection when I really didn't think he had and ds2 is famous for having pneumonia but presenting with leg and stomach pain instead of the usual symptoms.

My plan for September is to attempt to reclaim my house! I will finally be able to, legitimately, move all dd's toys upstairs to her room and my living room will look like a living room rather than a playroom - again, for the first time in years! Mind you, given that there is likely to be a puppy shaped addition to the family by then, I will probably find myself disappearing under dog toys and chewed up slippers etc.

Leonie, I am scared to use the technical terms/language I've read about in case they think I've looked it up and made it up, iyswim.

Apparently when I go on to have a full episode I get very flushed and the last lot I had, dh said I appeared to have several short blips of staring and being non-responsive, but literally just for a few seconds, whereas when the rest of it is going on I can acknowledge that he's spoken to me, but not communicate properly.

Finally have DS1's appointment for the first fit clinic - 2nd July!

He IS having some odd things going on, mentioned it on this week's Goose & Carrot thread, enough to be noticeable IMO.

As for my joints - that seems to be taken far more seriously than my seizures ever have been! I'm on naproxen for the pain (meant to be on 3 a day, but if I took that many, I'd be incapable of looking after the DC's!)

I've had blood tests for RA, but they came back negative.

I've just had an X-ray yesterday, and more bloods done, as they want to look for rarer types of RA that don't show up on the standard bloods they do.

If anything hinky is thrown up by the X-ray, I'll get sent to someone orthopaedic. If anything hinky shows up on this second lot of blood tests, I'll get sent to a rheumy.

Shame they've not taken my epilepsy this seriously until I told the GP I felt he was being negligent...

Hi moose.
Oh, he will be having a a fine old time I am sure :)
So sorry about your dog. Devastating when they go :(
I had a positive lupus blood test last year but the rheum said they don't dx on the basis of bloods and I had no other symptoms!!
Hmmm...
I think I will take ds2 to gp later today.
I might take myself when they are both back at school next week.

So your bloods say you have lupus, but yet they won't dx you?! How odd. Have you asked for a second opinion? I would.

Definitely go back then Badvoc - I was the opposite, first brain scan I ever had was suggestive of lupus, but I tested negative in my blood test.

I might go back and see the gp who referred me.
I was unhappy that I was dismissed by the rheum tbh. She said that lupus is never dx on blood test only and that I had no other lupus symptoms.
I have joint pain and back pain every day.
Gynae issues.
Headaches.
GERD.
Itchy skin.
I don't know :(

Badvoc

Have you been on the Lupus UK website?

I've linked it on the page that tells you what you need to get a dx in the UK.

Even if it's not lupus though, they shouldn't have just discharged you. Your GP should be working with you to get to the bottom of your symptoms and if rheumy says it's not their area - then they need to try a different route.

Yes you are both right. I think I have been so focused in sorting ds2 out that I have out my own issues on the back burner.
I will make an appt.