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July 18 Hello worldWow. have I been a bad blogger!
 No posts in almost two months, naughty me. The good thing is, it's because I've been doing so much better that I'm struggling to fit everything I want to do into the days! The dopamine agonist, Pramipexole/Mirapexin. is really really helping me. I'm so much better than I was just 6 months ago....soooooo much better!
 I stopped increasing the dose at 2mg of the salt or 1.4mg of the base (confusing dosing huh?). My pain levels are way down, so far down that I now rarely take any analgesics for pain (which for me means my pain stays at no more than 5 on the 1-10 scale) whereas before I was downing as much codeine as I could, using all the alternative pain relief methods at my disposal and still dealing with lots of pain (9 most days after I came off the amitriptyline  ), My fatigue is down and I can do things. I still get exhausted if I don't pace, but now I'm getting exhausted from building brick walls (literally) whereas before I was exhausted from sitting in a chair. The brain fog has eased alot too, tho I still deal with alot of cognitive stuff like my weird memory - can remember numbers I couldn't remember before being sick, but forget a conversation I had yesterday.  I just adore my doc for getting me on these meds - he's really turned me around.The other stuff is still there, though having the fibro under far greater control has meant that everything has eased. The doc also has me on Clonazepam which I've found helps the CMP enormously - I haven't been to physio for months and am only now looking to find a therapist again (Sam's having a baby!) because of the afore-mentioned building work!
The clonazepam also works on my myoclonus/seizures as we found to my cost when I didn't take it for 2 weeks when Si was away and ended up having palpitations, fainting, vomiting and then seizing, all in 5 minutes. That involved an ambulance trip to the A&E which was awful, but that's another story. It seems that the POTS-like symptoms I had for a while before weren't just down to the amitriptyline as I had another spell. I actually found out what happens in my funny turns when at A&E: my pulse shoots up, then reaching 140 bpm whilst lying down , my systolic bp also increases - my heart was beating sooo hard! - but my diastolic bp drops, then my pulse drops as does my systolic bp and I faint. They did an ECG at the hospital and found nothing interesting (to them - I found being a 26-year old having tachycardia whilst lying down interesting enough!) and I had another at the GPs surgery but everything behaved. I'm having a holter monitor next week but it seems to have eased off. It looks very very likely that I have episodic Dysautonomia (POTS & NCS) - I'm so glad it's not all the time as it truly sucks! It's exhausting. It also looks likely that this is the cause of the seizures as fainting or tachycardia have been known to cause seizure-like activity and the doc of a member on BYDLS who knows a wee bit says Dysautonomia can cause myoclonic seizures. So that's why the cardio stuff is being investigated (first at least) instead of going the neuro route.
Now I'm back on the Clonazepam (not coming off that again!) everything's gone away and I'm quite happy about that. Especially as having a seizure on record has meant I've lost my driving licence
 and I need to be seizure-free for a year before I can get it back.  April 17 Meds mix-up updateI took my proper dose of Pramipexole last night (I refuse to start my dose increase again from the low dose! That would put me back a month
) and the side effects are back.  Majorly nauseous last night, funny bp, generally feeling awful. Then nausea and headache today. Si had to go out at midnight to get me more Powerade Aqua+ (thank god for 24 hour Tescos!) and I'm still guzzling it today...it's helping the nausea and headache but hasn't made them go away yet.Sooooooo pissed off! I'm calling the pharmacy to complain to the manager later when I feel up to it.Update on the update....I'm soooo wiped out today. Had to have a nap for the first time in ages and 2 hours sleep has left me still feeling groggy and poo. April 16 Bloody fucking pharmacyWhilst refilling my weekly pill box this morning I noticed that the new box of Pramipexole I opened was different tablets to the last box. On closer inspection it turned out that the last box (that I've been taking all w/e) was of Mirapex/Pramipexole 0.088mg not 0.18mg. It had my Pramipexole 0.18mg prescription sticker on it but the tablets were the wrong bloody dose! Aargh!
 No wonder I had minimal side effects over the w/e! I upped my dose one day and then halved it for 3 days. Fuck, fuck, fuck! This could've really set me back. I'm going straight back onto the proper dose tonight (please please please can I not have wasted a month of dealing with side effects?  ) which will not be fun.I'm calling the pharmacy in a bit and raising merry hell. UpdateI haven't blogged in a while and it's actually because I've been doing pretty damn good!
 The Pramiexole is really helping...my pain levels continue to be lower then they were (tho I am having a bit of pain again), my fatigue is less and my stamina is much higher.  I've actually managed to make some progress in the garden! So I've been pretty damn busy doing stuff and making the most of the weather for the first time in ages...everything inside is suffering!  I'm waking up early in the mornings (5.30-6.30) with nausea and needing biscuits and Powerade Aqua+, but I can now then stay up and I'm loving having long days to do things in! The side effects have really eased, even when I upped my dose last Thursday. I am loving this med! April 04 Good day so farWell today I woke up with no headache and truly minimal nausea. I felt good enough to have a proper breakfast with, shock horror, fruit in my cereal! If the Pramipexole side effects are going to settle into 2 days of shite-ness for each dose increase then I'll be happy. That'll mean there's only 8 days of shite-ness to get through! April 03 ProgressSome possible progress with the Pramipexole side effects and the headaches...I got some Migraleve last night and took a pink Migraleve and it seemed to help last night - although I got nauseous after taking the Pramipexole I didn't puke and I didn't get a migraine either. Plus I slept well so I can't have had much of a headache overnight! I drank lots and lots...two bottles of rehydration drink right before bed and I think that's helping. April 02 Another dose increase, another side effectLast night was my first night on my new Pramipexole dose of 4 tablets a day. I took the tablets and had dinner straight away and felt fine till about an hour after I'd taken the pills. Then I started getting nauseous and dizzy so I gave up on being up and headed for bed. Ended up throwing up until my stomach was empty and then I started to feel better. unfortunately, it was hours before I could take even a sip of water without the nausea returning so I got dehydrated again.
So tedious. I managed to get a bottle of Powerade Aqua+ and a ginger cookie down eventually last night, but I still woke up this morning with a headache as well as nausea. Paracetamol, Ibuprofen, 2 bottles of Aqua+ and a couple of ginger cookies later and I'm feeling a bit better but still rather headachey and very delicate. And now I've run out of Aqua+!  Apart from that one time when we drove home from the Hulme's after I took my pill, whenever the Pramipexole's made me actually sick, I've felt better as soon as my tummy is empty and haven't then thrown up again. So the new plan for dose increase nights is for me to have a light meal very early (like 4pm!) and get plenty of water and rehydration drinks down me during the afternoon and then not eat or drink anything until a couple of hours after pill time. Hopefully that'll make a difference. March 29 Catch upI haven't blogged for a while because things have been rather crazy. On the 21st, hubby finished working at his last job and we went up to his parents for a long w/e to relax. We actually did quite alot - went to the RHS Hyde Hall garden, walked Archie in Hatfield Forest, went clothes shopping with the M&S vouchers Si got as a leaving present (new jeans finally!
) and went out to dinner at Down Hall with a group of Si's friends from college - and I did pretty good. I opted to not take my Pramipexole at all on the night we went out to dinner as we got back late and I was too knackered to stay up for hours feeling nauseous and I think that was the right thing to do. I've been using my stick alot lately - tho I used Si's arm instead when we went to dinner - as although I haven't been getting much pain, I have been very wobbly and tired. When we were on our way home from the in-laws, I found out my Dad had been taken into hospital with a problem related to the Warfarin he's been on since having a heart valve replacement 11 years ago. So when we got home, I repacked my bag, had a quick lunch and Si took me and Archie to Southampton to get the Red Jet to Cowes. A crazy few days followed, with me translating the medical stuff for my Mum and helping deal with doctors. Unfortunately Dad picked the week when most of the GI staff in the south are at a conference so his colonoscopy could only be done today. He's doing really well...the anaemia's been treated and the bleeding seems to have stopped, so as I had a plumber scheduled to come today, and physio plus the Prof tomorrow, I came home last night.
I've been really struggling with headaches again this week and I know why. I had a couple of glasses of what turned out to be not great wine at dinner on Saturday and didn't drink enough water b/c the waiter was so slow at replenishing it! So I got a bit dehydrated again.
Basically a three day headache with large amounts of paracetamol and codeine helping but not getting rid of it  and huge volumes of Powerade Aqua+ (the only sports/rehydration drink I can have as it's without sweeteners) helping, but going all too fast (I can only get it at Tescos and Somerfield). I'm going to talk to the Prof about this tomorrow as it's ridiculous! I haven't been able to get even an acknowledgement that dehydration is involved from any other docs so they won't help - but given that vomiting and alcohol (not even much!) cause this, I think it's obvious it's dehydration related! And all these headaches are really getting me down. Plus I'm taking too much codeine to survive with the headaches and I'm not supposed to do that regularly as repeat codeine use can end up causing headaches. My headache this week culminated in a full-blown migraine Tuesday night and after I took an Imigran and slept for a few hours it had gone. However, I then took my Pramipexole and within an hour was throwing up my entire dinner (and possibly the Pramipexole too ). So it would seem Imigran and Pramipexole do not mix. Another reason I need the headaches under control.Yesterday I actually got quite a lot of Fibro pain for the first time since I started the Pramipexole. I missed a dose Saturday and threw up my Tuesday night dose so it would seem if I miss doses, the pain comes back fast. I wasn't going to take the Pramipexole last night as I got home late and tired, but I was hurting and couldn't sleep so I figured I might as well get up, take it and sort myself out. Seems to have worked as my pain is down again today.
Was horribly nauseous last night tho. This is really going to take commitment. I really want to stick with the Pramipexole as it's working so well already and I want to get my dose as high as possible as fast as possible so I can then work through the side effects once I'm on a stable dose. However, what with not being able to take it and go out and not being able to take Imigran with it and and and it's going to be quite tough. I really need to be at home doing nothing every evening for the next few months but that is just not going to happen. Not sure what to do. As I go downhill and the side effects worsen with just a couple of missed doses, that's obviously not something I want to do in order to go out. I guess maybe I just need to make sure that if I'm out in the evening I have nothing scheduled for the next mornign so I can stay up late and then have a lazy morning recovering spoons. March 09 Itching!When I first started on the Pramipexole I had a runny nose and eyes at night for a few days. Yesterday evening was the first time I increased my dose and it made me itchy! Poor Simon had to get up last night, help me wash my hair and change the sheets because I was deperate for some comfort. Didn't think to take an antihistamine then.
I'm still really itchy today so I've taken an antihistamine and hopefully that'll help. This is going to be a bore if it happens each time I increase the dose! These side effects weren't mentioned on the drug information leaflet, but on the Mayoclinic site I found them listed under less common and not serious side effects. No one mentioned this one! It's a good thing I have the internet!
This is driving me nuts! March 01 Side effects easingLast night was my third dose of the Pramipexole. I opted to take it earlier, right after dinner, so that the worst bit could be gotten over with whilst on the sofa watching TV with Si. That made it ALOT easier.
I took a Zantac at the same time again - that definitely seems to be a good idea.I measured my bp as well for the first time with the Prami and it did drop...didn't get drastically low, but I seem to really feel small changes. It was around 115/70 pulse 85 (normal for me on that meter would be around 135/80 pulse 75) for ages when I was feeling shitty and I was getting the full dizzy, lightheadness...plus it was ages before I could even try to stand without feeling like I was going to keel over.
But nibbling on food and having distractions really helped me get through that and by 10pm I could stand okay. I then took my zopiclone at normal bed-time. Didn't sleep all that well...got a headache again and had to keep on getting up for drinks.
I felt sick at one point  but I managed to get downstairs and a ginger biccy helped. This morning I felt crappy, but managed to get out of bed (on Archie's insistence!  ) at about 9.30am. I've been feeling okay today - I even did some light gardening this morning! February 27 Started the PramipexoleI took my first dose of the Pramipexole last night. Although I had been warned about the side effects I did NOT expect them to be so major straight away. First thing was that I had a mild allergic reaction to something last night....my eyes and nose started streaming and I coughed a bit. But after I got up for tissues and to wash my eyes it seemed to settle down. Obviously I don't know whether it was the Pramipexole or not, so I'll see what happens tonight. If the same thing happens I'll take an anti-histamine and then take one with the Pramipexole after that...I'm seeing the Prof on Friday so I can check that out with him then (seeing him so soon makes sense now!
).Then this morning I woke up feeling awful. Nauseous, achey, headachey, generally awful. The plumber was upposed to be coming today, but I couldn't get out of bed, let alone make myself presentable and talk to a stranger!
And Si couldn't stay home so he called the plumber and rearranged.I took some Zantac as the Prof had said a PPI (similar action to zantac) could help, but had forgotten to tell my GP to rx it and I forgot too. I slept all morning and got up feeling very delicate. I had some IBS friendly lunch (noodles with bouillon and chamomile tea - yay for knowing how to cope with GI upsets) followed by decaf tea and am now starting to feel vaguely human. Pity it's nearly 2pm and not nearly 8am! My routine is just shot! i think I might just struggle into some comfy clothes (I'm back to no pressure on the tummy please! ) and sit on the couch making cards. February 23 Coming off the amitriptylineI've already noticed some differences having reduced my amitriptyline dose (down to 1/4 tablets now
)...
The only heart-related funny moment I've had thus far was due to me overheating myself with my heat pad without noticing (not a good thing to do! January 29 WellbutrinMy FIL has suggested that Wellbutrin could be a good med for me as it acts on serotonin, norepinephrine AND dopamine and it can cause you to lose weight. I was considering the possibility of taking either a serotonin and norepinephrine reuptake inhibitor or a dopamine agonist, but if this could do the job or both of those and help me lose weight it sounds great! I definitely want to talk to Prof Davies about it with David (my FIL) there.I'm currently on 50mg amitriptyline/elavil, but I want to come off this b/c I think it's been causing my palpitations and POTS like symptoms, plus it could be causing or partly causing my ridiculous weight gain. However, I need it to get sufficient stage 4 sleep, so I'm going to need something else. I don't think Wellbutrin would help with this, so unfortunately I might need something else just for sleep. |
). And it hasn't been long enough yet to notice any definite change in my weight (down from 12 stone 7, but that could just be fluctuation).|
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