Hi, I'm Kerry

Hi me again! Yet another set back. Will this ever end? I’m just so stuck on what to do to get better. Dr Surenthrian prescribed me Clonidine to add in as I was having bad patches around my periods but I wouldn’t solely say this is the main reasons for my setbacks and so I held off taking it. But I just don’t know what to do now and what my next steps are.

why not take the clonidine? have you tried any of the CGRP drugs? which meds have you been on and for how long?

As don’t really want to be taking loads of drugs! My symptoms calmed down after a few weeks so thought I didn’t need the Clonidine. And as Pizotifen hasn’t worked fully removing my symptoms I haven’t got much faith in any other med removing them.

I’ve been on pizotifen since January 2022, I’m currently on 2.5mg a day. I was also on propranolol for my heart but have now came off this.

I know I’ve only tried one med and it is all about trial and error with this condition but I’m just fed up of not feeling well.

I know it sucks – nobody wants to be taking medicine. I think every day about how I would like to get off of drugs, but the risk of sliding backwards really isn’t an option. It’s about optimizing for which path gets you closer to feeling better: you can not take your medicine, which certaintly isn’t going to do anything besides accomplish your goal of staying off of drugs, or you can take the medicine in the hopes that its going to contribute to your feeling better at the sacrifice of being on more drugs.

Only you can make that decision, but in my opinion, if you really want a shot at feeling better, you don’t really have any other option besides to do as the doctor ordered. There is no path where you dont take drugs and magically get better, or at least its probably very unlikely at this point.

quick q: have you ever had your hormones evaluated? Sometimes a migraine treatment strategy for women is going on or off hormonal birth control, depending if you’re on it now or not.

Dr. S’s reputation precedes him – I’m not sure you’re going to find a better doctor to manage your condition.

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Thank you for the advice and so true about Dr S, as I only see him via zoom it is a bit harder than if seeing him in person.

I was on the contraceptive pill before I got diagnosed, Dr S asked me to come off it so I did. My periods have only started to affect me in the last year or so. In the first year they had no affect on making my symptoms worse but they seem to now, which is why he suggested Clonidine.

This flare up has started since I went to the dentist to be fitted with my Invisalign but on the same day came my period. I’m still currently in that flare up, lasting nearly 3 weeks. So I’m not sure which one has triggered it.

so now you are only on pizotifen? personally I’d just try the clonidine – if you don’t like it you can always stop, just like you can stop taking medications at any time, as long as you keep your doctor in the loop.

when’s your next appointment? I’d just come clean with Dr. S and say that the current treatment isn’t really working well at all and you want to change directions, which will probably include coming off the pizotifen.

there’s really no way out of this other than meds though, I’m really sorry to tell you. You’re probably anxious or depressed and or both in combination with your condition, which feeds into it in a nasty feedback loop that makes you feel even worse. If you can afford it, I’d really suggest trying to get some mental health support as well.

I know its hard, but if you’ve only tried one medication, its really more rational to assume there’s something else that’s going to work rather than to despair, although being rational when you’re stressed and anxious about your health is hard, I know. Keep your head up --I’m rooting for you

My anxiety and depression at the start was not good at all but as soon as the pizotifen kicked in and I started to feel better my mental health got better (I also had CBT too). But now as nothing is really working anymore it starts to creep back in.
I’ve read so many success stories on antidepressants but not sure why Dr S hasn’t suggested one to me. I tried a couple SSRI when I was really depressed but they didn’t agree with me. I just feel like I’m stuck feeling like this. Thank you again for your advice really helpful.

I think I probably also have PPPD as when I took a questionnaire test on it my score was quite high but not sure if you need to treat the VM first which hopefully then helps the PPPD.

You have a complex condition. I would start by having a candid conversation with Dr. S. If you don’t start taking the clonidine by the time you see him next, let him know that and why.

I think you need to be more candid with him and press him a little bit

edit: although, i do think the best thing would be to take the medication, but obviously that’s your choice. thats only my opinion

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Hi, me again! My symptoms have got even worse again this week. I’ve got symptoms that I had at the beginning like bouncy floor, vibrating floor when standing still etc. I’m getting so fed up just constantly feeling horrible every day. Do I just bite the bullet and start the clonidine? But then what if it doesn’t work :woman_facepalming:t3:

start the clonidine as prescribed. your doctor prescribed it for a reason! for all he knows, you’re taking it

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Thank you! I’m just always nervous taking new medication☹️ Dr S prescribed this med as my periods make things worse but the past couple of weeks I can’t blame my period and I’m worse. I’m even getting more headaches and head sensations I got right at the beginning like chills and a feeling that my head is cold at the back. Not sure why all these symptoms are happening again and I’m just tired of feeling horrible every day, I just want to be back to normal but I don’t know how!

Also I’m not sure why he hasn’t tried amtriptyline or nortriptyline as I know these are the first meds that are tried!

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talk to him about this. People tend to be intimidated around doctors to give them the full scope of what’s going on. I’ve learned to just rant to my doctors and really emphasize my ideas to them, and most the time they listen if you do it in a way that seems informed.

Just be candid – why not amitriptyline, why not nortriptyline? why am i feeling so much worse? Is clonidine really the best for me?

Doctors are not just prescribers and treaters of illness but educators too (well good ones anyway)

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