I started Clonidine 5 days ago.
I have to take 1 x 25mg for 2 weeks, then go up to 2 x 25mg.
I’ve had to come off Propranolol as Clonidine can lower blood pressure (I also read especially when taken in conjunction with an antidepressant (Nort))
I was surprised to read on the leaflet inside the packet that it’s first line useage is to prevent migraine and reduce hot flushes in menopausal women. I thought it was ONLY for the hot flushes and than it was used off label for migraine.
So it seems perhaps Clonidine could be thought of in the same league as Pizotifen.
Anyway, Dr S said he reckons it works to beat dizziness associated with hormones in 70% of cases so I’m crossing my fingers.
I have to say so far, I do not have a headache today and I did not have a headache Saturday. That would be the second and third time in 14 years!! So I believe it’s doing something. Whether it works for dizziness remains to be seen as I started my period the very day I started Clonidine. We’ll see…
My neck is hurting a lot and my vision is completely off the wall- I can’t look at patterns at all right now- My boyfriend is wearing a horiztontally striped shirt today and I told him before I couldnt’ look at it but today I can’t even glance at it. That tells me something definately switched in my vision, I’m not just inventing it.
Anyways… Clonidine… I hope we turn out to be best of friends
Love to all! x
Wishing you luck with the clonidine, you’ve certainly served your time with this migraine shite! I’m on gabapetin now as we’ll as nori. Xx
this was actually prescribed to me by a psychiatrist to possibly help with anxiety- I only took it a couple times didnt do anything- not sure what dose it was though. Let us know how it goes- if it helps I might ask my psych for another rx.
so dr. s prescribes this to even out the mav fluctuations from hormones? do u take it everyday or just during bad times?
Merci beaucoup Anna… How are you getting on with the gaba?
Hey Sarah- How come you didn’t stick at it?
Yes to even out mav fluctuations due to hormones. I have to take it every day- 1 x 25mg for 2 weeks, then 2 x 25mg from there on.
It was to take as needed for anxiety- it didn’t do anything- I just looked at my bottle- the pills are only 0.1 mg??? that seems like nothing then!
Are you staying on topamax? what dose r u on now?
0.1mg must be very little, or 25mg is a lot, I don’t know! Eeek!
I’m staying on 50mg of Topirimate. I was concerned that pulling out Nortriptyline or Topirimate would kind of be like taking away the foundations that I’d built up over time. Topirimate may have been my magic bullet but I couldn’t hack the weird hearing hallucinations and hearing my thoughts screaming at me episodes! I gather that’s quite a rare side effect, though it’s still happening on 50mg, just less often.
What are you on at the mo?
Are you sure yours wasn’t Klonopin?
The mg and use would seem to suggest that it might be?
Just throwing it out there.
when u say topa may have been ur magic bullet- was the higher dose helping your mav a lot then? did u have any trouble with your balance/walking and have any of your meds helped with that? sucks about the side effects- someone else posted about having auditory hallucinations too recently- not sure if you saw that post.
Nope it wasn’t klonopin- I wonder if the dose was a type or something???
i am on nortriptyline and lyrica- going to start atenolol- i hope to drop lyrica soon because it isnt doing anything for me. i am currently doing a course of antibiotics for lyme and it isnt doing anything i think i prob do not have it.
I saw dr s on Friday and I am supposed to start clonidine aswell. The tables are 25 micrograms not milligrams. 0.1mg is 100micrograms so the dose Sarah tried was higher.
I don’t know of I am going to take the clonidine. I am going to wait and see how effective the lyrica( pregabin) is at 300mg. I wish I had asked him why he didn’t prescribe pizotifen before clonidine ?!!
i’m confused so I have .1 mg- are your tablets .25 mg? or 25 mg? maybe u guys are using a different measurement system bc you are in the uk (I am on the us).
DOH! Thanks Becks!! What a wally. Sorry- yes, just whipped out the box and they are micrograms! How do you write that abbreviated??
Do you have fluctuations around your cycle? My geuss is if so, that’s why he choice Clonidine over Pitz.
Sarah- Topa at 25 and 50mg definately helped me last year. And at 75mg I felt it was starting, but I couldn’t hack those side effects. Dr S said a lot of people get to 100mg and fine it just clicks and works for them. But obviously I won’t know now.
RU in the UK?
nope im in the u.s. i could start taking it on a regular basis maybe and see if it does anything? I would imagine taking one here and there wouldn’t work for mav. i wish i was in the uk so i could see dr. s. he sounds awesome- much better than my dr. if atenolol doesn’t work for me i am going to ask my dr if i can try topa again. the first time i tried it i got these weird eye spasms where one would just close for about 5 mins and i had to hold it open. why do i get these weird ass things that make me have to stop the drug??? and the spams took weeks to stop happening even after i stopped the topa. ugh.
let us know how the clonidine goes for you!!!
— Begin quote from "sarahd"
Nope it wasn’t klonopin- I wonder if the dose was a type or something???
— End quote
Yes, if it was 25 micrograms that would make more sense. I could see the clonodine for migraine issues but not for anxiety as I’ve never heard it indicated for that, either on or off-label.
Yes, my symptoms vary dramatically during my cycle, particularly when my oestrogen levels change. I will be very interested to hear how you get on with clonidine. I am going to hold back to see how the 300mg of lyrica goes. My mum is a pharmacist and when I mentioned clonidine she freaked out and said it causes depression. Believe it or not she won’t even take paracetamol so I tend to ignore her but it has made me wait a bit before getting the prescription. I know pizotifen can cause depression but it can be tolerated really well and pretty much cure people. I think most drugs have depression as a side effect.
Easy to get confused between micrograms and milligrams. Micrograms is written like an m but with a long squiggle on the bottom. I used to have a career before this shit as a scientist and I spent my days converting between nano, micro and milligrams. I think you are doing amazingly well to keep working.
Oooh I wonder if Dr S will prescribe this for me when I see him this week. Really interested to hear how you both get on with it as i have not heard of it before. What class of med is it? x
Dr S didn’t put me on Clonidine, he has added gabapentin instead.
Becks, I just wondered how you are finding the Lyrica as I know it’s similar to Gaba?? Do you think it is controlling your symptoms as well as the tricyclic did? x
Hi Jen, I was wondering when your appt was, how did it go? Any good advice worth sharing. Yes, lyrica is basically a more potent form of gabepentin so you need lower doses. I wonder why he puts some people on gabepentin and some (less) on pregablin. Unfortunately I have had a bad 6 weeks. I have gone up really quickly to a highish dose of 300mg. I had really bad vertigo attack after coming back from London and my brain is still recovering. I am trying not to freak out as I think I need to be on 300mg now for 2 months to see if the attacks stop. I was still having periods like this when on TCAs.
How u doing after trip to London?
I had a 3 day break down in Kent and it was really nice. My hayfever was flaring up which does not help, I think it gives me vertigo. I coped well until the day we were coming home when I think I was really tired by that time and then we got stuck in bank holiday traffic so the journey was a lot slower than it should have been and I felt really grotty yesterday. I seem to be doing okay today so just taking it easy really.
The appt itself went well. Dr S is always nice and it is such a relief to speak to someone who understands what this is like. He had me see his vestibular physio for some exercises and she will be phoning me 6 weeks to discuss how it’s going. Dr S said I can have a telephone consultation with him in 3 months to save me travelling down to see him in person. I wondered if maybe he uses Lyrica for your first/main med but if you are already on something else he seems to add Gabapentin rather than Lyrica.
Sorry you aren’t feeling good. Did Dr S say anything about that or does he think you need to give it more time? Do you split your doses and what time do you take it? x
Hi Jemma, I was doing ok until after I saw dr s I take 100mg three times a day. I have lived with this for 6 years chronically so would have been amazed if suddenly I was massively better on a lowish dose. It tools about 6 months for me to c much improvement of amitriptyline/prothiaden. As dr s said the nail is well and truly hammered into my head!
I think u r right about pregablin being his first-line if on no other drugs and gabepentin in addition to one thing else.
If I am understanding this right, does dr. s. think the longer you have this issue, the longer it will take for treatment to work??? I can tell you I have tried both lyrica and gabapentin, gaba made me worse lyrica made me better- so they definitely are both different- I found both to be incredibly sedating.