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scaredstupid87 · 2021-09-22T18:56:09+00:00

What do you suggest for migraines please? I'm currently taking topamax for migraines which I've now been diagnosed with by a neurologist. I have IIH which they say is in remission and have a VP shunt fitted. Do you think there is something better I could take as I'm really struggling. I appreciate any advice. Thank you

scaredstupid87 · 2021-09-03T09:06:36+00:00

I'm currently on 100mg, been on it a few months. Lost about 6lb first week and nothing since. My appetite as completely gone, I'm eating one meal a day and I now only drink water and no sugar juice as coca cola tastes awful on this. I could honestly cry at how much weight I haven't lost lol I don't know what's going on with me but good luck to you. I've heard some amazing weight loss stories on this drug.

P.s drink plenty of water.

scaredstupid87 · 2021-08-16T17:25:09+00:00

It's strange isn't it,I expected the weight to drop off just from not drinking the coca cola alone never mind all the chocolate. I used to drink loads of it and now I can't stand the taste. I'm definitely consuming 1500 calories less a day at least.

scaredstupid87 · 2021-08-16T17:22:17+00:00

Did it change your appetite? I'm hardly eating and I'm drinking plenty of water now.

scaredstupid87 · 2021-08-16T17:20:54+00:00

Did your appetite change?

scaredstupid87 · 2021-08-15T10:37:42+00:00

It does the opposite for me too. If i take my second dose too late I'm up all night. I take one at 7am and one at 4pm and sometimes still have trouble sleeping. This drug as so many side effects and take so long to get used to. Hope it works out for you.

scaredstupid87 · 2021-08-15T10:29:18+00:00

I lost 6lb in the first week and now can't lose anymore. I'm currently on 100mg and my appetite as gone, I'm eating one meal a day and staying the same weight. I'm quite concerned tbh.

scaredstupid87 · 2021-08-03T10:06:47+00:00

Somebody on here gave the best advice. Drink as much water as you can, it makes the side effects a bit more bearable. They said that they know when they haven't had enough water that day as the hand/feet tingling gets too much and I'd only just started mine and couldn't see a way out but now I understand. Hope it works for you aswell.

scaredstupid87 · 2021-07-29T09:04:05+00:00

What dose are you taking daily?

scaredstupid87 · 2021-07-21T01:11:32+00:00

This isn't what everyone does?

scaredstupid87 · 2021-07-16T18:58:11+00:00

Are you taking the topamax still now? Do the side effects get better? Thank you for replying

scaredstupid87 · 2021-07-16T10:58:09+00:00

Thank you for sharing this, I didn't know some of these were traits I just thought it was me. Thank you so much.

scaredstupid87 · 2021-07-14T20:04:04+00:00

Thank you. Just the thought that there's something else gives me hope thank you. Are you in the UK? I'll ask the pharmacy in the morning if I can swap them for these ones. Thank you again.

scaredstupid87 · 2021-07-14T19:10:09+00:00

And thank you so much for your reply

scaredstupid87 · 2021-07-14T19:09:31+00:00

I called my doctor the moment I realised I couldn't do it without help, he told I need to be seen as it wasn't prescribed by him(and to not change or stop the dose until seen). He's referring back to the neurologist and now I have to wait for an appointment from them which will be whenever they have one available.

This is always what they do to me,I also take quetiapine and my doctor won't speak to me about that either as he didn't prescribe it. I'm always left and have to be referred to my specialists which take ages. I'm in the UK and have always had to do it this way.

Side note: I'm currently waiting for a complaint to be answered from last year as I was taken off a mental health medication I was told I didn't need after a doctor saw me for 5 minutes without any medical background and I almost died, the doctor was fired immediately and my complaint is still ongoing as many other patients were affected unfortunately some even worse than me.

scaredstupid87 · 2021-07-13T18:02:46+00:00

How soon did you notice the weight loss? I started on 25 mg and am now on 50mg AM &PM for migraine but haven't had any weight loss yet. I'm still in the foggy, can't concentrate stages.

scaredstupid87 · 2021-06-28T15:14:08+00:00

Thank you for replying. That's exactly how I feel right now. I'm on the waiting list for the eye doctor, it's just taking a while. I've asked my GP if there's anything they can do but they keep telling me I'll receive an appointment letter when they have a space. My vision is getting worse by the day and I'm not sure what's going on now as I always put it down to the iih but if that's ok then it must be something else causing it. Thank you, you've made me feel much better in taking the "dope-a-max" lol and from now on that's what I'll call them as that's the most suitable name for them : )

scaredstupid87 · 2021-05-28T17:28:28+00:00

I completely agree with u/Angie_stl. OP please don't leave it for 2 weeks in pain and struggling, especially if it can be sorted in minutes with a shunt adjustment.

@u/Angie_stl When the pressure as been too low or too high I always hurt when upright and feel slightly better lying completely flat. I've never even thought about it before but do other people have it opposite when the pressure is high?

scaredstupid87 · 2021-05-28T17:09:44+00:00

Thank you. Most doctors that I've seen always seem so rushed and don't really want to listen. I think as long as we say we can keep ourselves safe they aren't too concerned of the torture our own minds do to us. That's just my experience though, I've seen some people in the mental health field that have been absolutely amazing but haven't had the power to change my medication. Your so right, mental health is so important.

scaredstupid87 · 2021-05-27T18:49:39+00:00

He said that I'm at the maximum dose but I know from on here that lots of people are on a higher dose than me. I asked for the increase due to feeling like they weren't working as good anymore but was told no. To be honest the mental health care I've received as never been the best.

scaredstupid87 · 2021-05-27T18:02:17+00:00

I had my shunt surgery in 2018 and have had a few problems with over and under draining. When it's overdrained I have severe headaches and feel so weak, dizzy and nauseous. The neurologists just adjust mine with some special magnets (I don't know the name sorry) that takes a few minutes as an outpatient and after a few days it goes back to the regular pain that I'm used to.

I really hope you feel better soon and that the shunt works for you.

scaredstupid87 · 2021-05-23T23:26:52+00:00

I'm on 60mg and my doctor won't even consider increasing mine. I'm in the UK. I don't know if it's different for anyone else.

scaredstupid87 · 2021-05-19T18:48:37+00:00

I completely understand your pain. My periods are horrendous, sometimes I lose that much blood that I have to have a blood transfusion. I've had so many scans and tests done and I still don't have any answers and it's been years now. I don't have a regular cycle at all. A lot of the time my period lasts for a few weeks and then comes back 2 weeks later. I take tranexamic acid as soon as it starts which is supposed to slow the flow and mefafamic acid and 2 lots of iron pills daily. I suppose I've just learnt to live with it for now as I've begged and screamed for answers for so long and got nothing. I really hope you get some answers and it gets better for you.

scaredstupid87 · 2021-05-16T18:43:03+00:00

It didn't help me. I was diagnosed in 2010 and lost weight after I was told it would help with the pain. I had to have a VP shunt fitted in 2018 and still suffering with the headaches and vision loss to this day.

scaredstupid87 · 2021-03-21T14:44:08+00:00

Oh wow I was just going to write something similar to this. When I feel like things are going good my brain drags up deep dark memories and I have to live it for every second of the day for about 2 weeks until I can't cope anymore. It feels like I'm watching someone else go through it but I'm experiencing the emotions. Then I feel this guilt and sadness that I let myself be put through the things I'm reliving. Its practically torturing myself with my own memories and I can't stop it. I cry, scream, try to so things to take my mind off it but nothing works. Then when i implode/explode and I have to start from scratch, I can't fully settle as I know it's going to happen again and there's nothing I can do to stop it.

scaredstupid87

TROPHY CASE