Author Topic: Optical Symptoms - Migraines  (Read 9926 times)

Re: Optical Symptoms - Migraines
« Reply #75 on: May 01, 2018, 06:55:16 am »
Stopped taking topiramate as it wasn't doing anything and frequency was up if anything. Minor chronic upset stomach was getting annoying too.
 It has however seemed to make extremely grumpy.  Maybe I should have ramped it down instead?

Wowbagger

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Re: Optical Symptoms - Migraines
« Reply #76 on: May 01, 2018, 09:55:05 am »
I just saw Salvatore's illustration. So, so accurate. Mine are usually the other way round, and there's more orange in them, but a brilliant depiction. Worthy of the Tate Modern in my view!
Oh, Bach without any doubt. Bach every time for me.

Re: Optical Symptoms - Migraines
« Reply #77 on: May 01, 2018, 12:57:15 pm »
Stopped taking topiramate as it wasn't doing anything and frequency was up if anything. Minor chronic upset stomach was getting annoying too.
 It has however seemed to make extremely grumpy.  Maybe I should have ramped it down instead?
Making you grumpy is one of the known side effects.

Taking an increased dose can help with this and the other effects.
<i>Marmite slave</i>

Re: Optical Symptoms - Migraines
« Reply #78 on: May 03, 2018, 07:07:33 am »
It made my grumpy when I stopped!. It seems to have gone away now. Stomach has settled down too, which is nice.

Seeing doc again next week.

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #79 on: May 04, 2018, 06:27:48 am »
I just saw Salvatore's illustration. So, so accurate. Mine are usually the other way round, and there's more orange in them, but a brilliant depiction. Worthy of the Tate Modern in my view!

Not mine, just something I found which accurately portrayed what I experience. Mine once switched round, from being like the coast of Wales to that of East Anglia, so to speak. Or vice versa.
Quote
et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Re: Optical Symptoms - Migraines
« Reply #80 on: May 09, 2018, 06:29:10 pm »
Salvatore, that's an excellent depiction of the visual distortions I get (even if you didn't create it yourself). I have seen it called "scintillating scotoma". Some years I have none, some years I have them almost every day though the triggers seem to be the same: bright lights, like the sun reflecting off a puddle or a car windscreen and, perhaps, stress.

Re: Optical Symptoms - Migraines
« Reply #81 on: May 21, 2018, 06:53:34 pm »
So, after stopping taking all drugs, the rate of migraines have decreased...go figure. Not long enough time to say for sure. Had 4 days with virtually no headache, which is the longest this year, followed by a couple of days with and then again a 3 day break. This is coming from where it was maybe 1 day a week.  Need more data, though.
Saw the neurologist last week and while he ideally would have had my try the topiramate for longer, he agreed that it most likely wasn't working.
He was, however, fairly excited about CGRP monoclonal antibodies and said that I would be an ideal candidate for it. It should be available in September, but wont be cheap (My insurance should cover some/all of it? Depends).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5486583/
http://theconversation.com/the-first-effective-drugs-for-preventing-migraine-may-be-available-soon-89109

Meanwhile, he has me trying out Gabapentin. It's pretty much a knock-out drug at this stage. (300mg, taken at bed time). The drowsiness in the morning is pretty severe, but he has me scaling up at a very slow level (2 weeks on 300mg, then 2 weeks at 600mg, max out at 900mg) and I can hold/scale down as needed.

barakta

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Re: Optical Symptoms - Migraines
« Reply #82 on: May 21, 2018, 08:03:37 pm »
Interesting re gabapentin, my lot said there was no evidence for it but some of the people on the vestibular dysfunction group I'm in (mostly vestibular migraine) have had it.  I've been offered it before for pain management but refused as I didn't want it masking "over-use" injury...

My migraine lot are excited about the new monoclonal CGRP stuff too but it will be Spring 2019 before NICE and NHS work out stuff and she didn't know what the protocol would be i.e. before or after trying botox injections and stuff...  I may also be a candidate as I've failed so many other meds and have almost perma migraines.

I'm currently trying dolovent supplements cos dealing with blood tests for candesartan isn't within my brain capacity atm. 

Re: Optical Symptoms - Migraines
« Reply #83 on: May 21, 2018, 08:20:14 pm »
Yeah, the gabapentin seems like 'Let's just try something until the CGRP becomes available'.
Candesartan did an excellent job with my blood pressure, but not much else.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #84 on: May 22, 2018, 06:17:36 am »
Gabapentin seems to be marmite like everything else.

My BP is quite low already so I am slightly concerned candesartan will drop it too low, I'll probably try that if the supplementation doesn't do anything cos I'm also not expecting it to 'cause any probs' beyond bright yellow pee either.

Re: Optical Symptoms - Migraines
« Reply #85 on: May 22, 2018, 08:27:00 am »
I am in a bind with drugs. Topiramate is working fine for me - but simply because I wasn't given potassium citrate with it (and my research now suggests that should have been standard protocol) I will have to stop taking it.

I can't function without it. Can't work. Can't even walk without a stick.

Not sure there are any effective alternatives for my issues - any drugs that have similar effects have the same problems with kidney stones. Studies seem to suggest once the kidney stone problems start, simply adding potassium citrate doesn't solve the problem, you have to start off taking it.
<i>Marmite slave</i>

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #86 on: May 26, 2018, 01:17:50 pm »
Feck, that sounds grim.

Is it worth talking to a pharmacist as they may know more about reality of meds than doctors. 

I wasn't told of kidney stones issues with either topiramate or zonisamide but I can't get candesartan without kidney function blood tests before taking it and 4 weeks in. 

Re: Optical Symptoms - Migraines
« Reply #87 on: May 27, 2018, 09:37:54 am »
It might be - depends on the pharmacist.
Meanwhile, I have been put on Tamsulosin to dispose of kidney stones. Seems I am one of the 3% who get low blood pressure, vomiting and extreme gastric upset from that drug. Ceasing taking it.
<i>Marmite slave</i>

Re: Optical Symptoms - Migraines
« Reply #88 on: May 28, 2018, 12:31:31 am »
Feck, that sounds grim.

Is it worth talking to a pharmacist as they may know more about reality of meds than doctors. 

I wasn't told of kidney stones issues with either topiramate or zonisamide but I can't get candesartan without kidney function blood tests before taking it and 4 weeks in.
Yeah, that does sound bad. If I found a drug that worked, I would be extremely reluctant to go off it.

I was warned about it and was told to increase my water intake. No kidney tests for candesartan needed here.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #89 on: May 28, 2018, 01:48:36 pm »
Interesting how varied the protocols are.

Rereading my topiramate letter it does say to drink more fluids and risk of kidney issues but no co-incliding prescription.

Sorry to hear you're having shit reactions to meds Mr C, hope the docs can find a combo which keeps you functional and works.

Re: Optical Symptoms - Migraines
« Reply #90 on: December 05, 2018, 04:00:31 am »
Well, finally got my Aimovig doses (GCRP monoclonal antibodies).  First time injecting myself with anything, but autoinjectors made it easy.
Really hope this works.
Courier was slightly puzzled by the big cooling box with biohazard signs on it!.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #91 on: December 07, 2018, 01:32:28 am »
Oooh! Hope it works for you. I'm due a review in Feb... Suspect they'll make me do botox before they agree to the new stuff.

Re: Optical Symptoms - Migraines
« Reply #92 on: December 08, 2018, 04:25:59 am »
Mixed outcome so far. (Early days, but many responded with instant results). Sleep miles better, wake up with a mostly clear head. Still get headaches in the afternoon, but at least the mornings are clear.
Lotsa stress/pressure at the moment which probably isn't helping.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #93 on: December 09, 2018, 02:10:57 pm »
Cautiously optimistic the new stuff will help you more as time goes on.

My migraines are so 'background' + triggers it is really hard to define what is migraine. I've /always/ had headaches, most deaf people do cos we're constantly overloading our brains to process sound.

My plan is to ask for a neuro consult with someone who has SEEN flicker sensitivity like mine in a real patient not just "migraine is weird shit" cos I'm not convinced the sensitivity is entirely migrainous and even if it is, I want to know why it's not improving with reduction of triggers, cos flicker light is always instantly triggering and the visual distortion is extremely annoying.

Re: Optical Symptoms - Migraines
« Reply #94 on: December 28, 2018, 06:21:44 am »
Maybe a 10% reduction. However, triptans work better now and the 'clear' periods are definitely more clear.
On my diary sheet, the doc has severity listed at 1-3, but in reality, if it was a scale on 1-10, I would often have headaches of 1 or 2 that I would not bother marking down.
 I can also better tolerate alcohol. I still pay for it, but it's manageable.

Only side effect has been bowel movements going from 2 a day to once. (was warned about potential constipation issues)..so not really an inconvenience at all.
Would I pay for it out of my own pocket? Marginal. But it's definitely improved my quality of life.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #95 on: December 28, 2018, 02:57:19 pm »
Interesting. Do you think you'll get more improvement over time perhaps?

I know what you mean about not logging 1 or 2 out of 10 stuff, I suspect I don't even notice a lot of my "migraines" cos my baseline is not great or I'm blocking out other more significant pain by dint of ignoring it.

Re: Optical Symptoms - Migraines
« Reply #96 on: January 03, 2019, 06:28:56 am »
Dunno. Just injected round 2.
Changed to a pharmacy near work for my regular triptan prescriptions. Only 3 mins walk away, so it made sense.
1st time, they lost it and I had to wait 15 mins while having an increasing line of irate (other customers) behind me.
2nd time, they queried why I was refilling already."I got chronic migraines. Please contact my neurologist if you have concerns about my medication".
3rd time, I had to pretty much argue with the chief pharmacist. If they at least pretended to be concerned about my well-being, I could accept it, but they don't and it just seems to be a power-trip.
I think I'm changing back.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #97 on: January 03, 2019, 02:48:46 pm »
Boo to annoying pharmacy, not what you need. I am very lucky the GP and pharmacy have almost never made errors in our prescriptions for 10 years and always help me get the 1 or 2 glitches fixed.

Re: Optical Symptoms - Migraines
« Reply #98 on: January 03, 2019, 03:13:51 pm »
Boots are reporting 'manufacturer cannot supply' for 50mg Topiramate tablets. Been told this twice now. I keep a supply in hand so I'm not running low yet,  not yet . . .
This is worrying, it has been going on for months.
<i>Marmite slave</i>

Re: Optical Symptoms - Migraines
« Reply #99 on: January 12, 2019, 04:09:21 am »
5 days free...and today may just have been my cold. (Took a triptan and it did nothing...took a Sudafed as my nose turned into a fountain and the headache went away).