Amy, so sorry to hear things have been rough. I hope you get some relief soon and find it constructive to see a new doctor. Maybe you need a different medication or treatment plan; I really wish there was something concrete I could offer to help. I really sympathize and emphathize with your frustration at not feeling progress. However, I’m going to be annoying and mention that you have come a long way from the worst days (I think). Still, I think it is very reasonable to want to feel much better, in fact to feel normal and 100%. So I will have my fingers crossed for you and will be interested to hear what your next steps are.
Thanks @lsengara I really appreciate I am not where I was I think for me this walking around feeling like in a bubble is the most unbearable sensation I don’t feel real and I feel I am losing my life as I don’t feel present I appreciate I’m not in bed anymore but I’ve had this 14months now and feel I should be further along after all this time . I don’t think the med is helping as much as it could but I guess I’ll have to wait and see what the specialist says
Swap the ‘months’ for ‘years’ and I could say the same. They do say, if wishes were horses, beggars would ride. Everyone would sooo love to recover in the twinkling of an eye, but I think it’s very easy to consider what progress one has made as a failure and become downcast if one compares it to some arbitrary target. So try to keep positive, and keep hunting. Helen
I sympathize completely and I can tell you are suffering. I know we all have to just go through our days and do the best we can, but I sometimes (often?) feel like it would be easier to do that if I got some validation that yes, this condition is cruel and unfair, and that having to change the expectations for one’s life so dramatically when I’m still pretty young is heartbreaking and humiliating. The goal after a big loss is acceptance, but how do I get to acceptance when I feel so much grief and despair about what has been lost, and feel so desperately sad about the life that could have been? And yet I try to go through the days presenting a positive face to the world and hiding my embarrassment and not complaining too much about how I feel. This sounds terribly self-pitying, but those difficult feelings can’t just be tamped down and ignored, or magically transformed into positivity. I only hope that it is some help to know that you are understood and that your feelings are valid. And that there are more treatment options available, as exhausting as it is to have to be cycling through them. Wishing you a good day—
Isengara, You describe the pain of grieving with MAV so well. Our loved ones may love us loads but they can’t know how hard a condition this is to live with. My marriage broke down six months into it. My husband even suggested I could be the one to move out. At that point I realised that he really had no idea how every day the things I manage to do are a battle, commitment, a feat of perseverence for me… he saw me as lazy and depressed. I’ve given up trying to explain it to him. I needed to protect myself from how he saw me, and his criticism. My recovery will be done alone, as a single mum, no matter how hard that is — at least I can respect myself and see how much effort I put in, at least I can give myself the encouragement, admiration and support that I would have hoped a partner would have given me.
We can be so proud of what we achieve on a daily basis. Getting up, out and about with MAV, day in day out, month in and month out… it’s huge! We may feel like we’re half the person we used to be (sometimes I feel like a living dead), BUT we are still alive and doing things.
Amy Louise I can do empathise with you. It’s ok to feel frustrated beyond words with this illness. Acceptance can’t be forced. It’s ok to feel what you feel. And keep looking for treatment, hang in there:-)
I so admire your resolve. I am so glad you seem to have found your own path to acceptance . It will make your path forwards so much easier and You have alot of inner strength to see you through. I hope you will continue to stay strong and thrive. Helen
Your attitude is very much to be admired. Thank you for sharing your thoughts. I hope I can find a fraction of your strength!
Thanks so much for the kind words @lsengara
I think what’s most frustrating is yes I have improved but I am still so limited in my life also feeling like you have a numbs hea and your not present in ur life isnso hard to deal with day in day out. It’s so hard to see the light at the end of tunnel when everyday feels the same . I do hope my second opinion can helps sometimes I really question if a pill is actually going to fix all this. I am not accepting this life at only 30! How r u feeling anyways lovely ? R u still on Effexor ?
Lucy I actually cried reading this , my heart literally goes out to you . You are so much stronger than you think , and your child is lucky to have a mum like you ! My partner didn’t get this at first now he really is so good but if ur other half can’t be there for you in your time of need he really isn’t worth ur thoughts. I know both us will eventually come out of this and will live a much fuller life because of it !
I know in the grand scheme of things of my life it isn’t a lot just feeling like ur not present or in a room makes life pretty hard . But I know I have to just take it day by day and get on with it . However I do think I’m going to stop pitz it’s making me feel so tired and hungry and not offering a huge amount of relief so god knows what il try next
I’ve read Pizotifien isn’t widely used mainly because of its side effects, weight gain being notorious it seems. I know all drugs seem to have alot of side effects but that comment struck me as being odd for that very reason. At least you are one of the luckier ones Amy. You don’t seem particularly drug sensitive and not anxious about changing drugs all of which go in your favour. I suspect you might end up on one of the anticonvulsants. They are very powerful and will most probably sort your ‘stubborn brain’ as consultant called it out once and for all. I do hope so. Might just all work out for the best because I’ve wondered how you’d manage getting Pizotifen in the US. I’ve no idea how their system works but Pizotifen was withdrawn there, from what I’ve read, several years back although in your circumstances I’d imagine there’s probably a way around it somehow. Helen
Hi Amylouise, I had this my head would feel so heavy like a fog, I noticed a real change when I started venaflaxine i’m now on 150mg and 80mg of propranolol both ER, I’m two year in, and am probably about 90% most of the time. I also do the diet, have supplements and exercise but I’ve had to adapt exercise. Hope you find some release.
Thank you so much for your reply ! I am so happy to hear this has eased for you . Did u kind of feel like ur head was numb and filled with cotton? It’s my worst symptoms . Do you have normal days now ? Sorry for all the questions I think Effexor may be my next drug tbh so happy to hear some positives could I also ask how long it took to kick in x
Amy, I’m so sorry that the pitzotifen hasn’t seemed to provide much help. You have given it a good try and it may take longer still to be effective, but I think you are right to be proactive in seeking new treatment options.
Venlafaxine (Effexor) has provided relief from the symptoms you describe as your worst for quite a few people on this board, myself included. I’m up to 75 mg/day—a somewhat high dose (for migraine, though low for depression. If your doctors aren’t certain about what to suggest next, perhaps this is one you can discuss with them.
Hoping you are having an ok day and managing. By the way, venlafaxine started working pretty quickly for me, within a week I’d say.
Hi Amy, Yes I had that feeling you describe, very heavy head like I was hung over and filled with cotton wool. Yes I have lots of normal days now I track my days every day I can go up to a month clear then I will have odd days here and there but its not continual. I started Effexor on 25 September at 75mg and was also taking 160mg of propranolol I would say I saw am improvement a few months in by far the biggest improvement from any med I’ve tried, which have been Topamax and ami I was always in propranolol 80mg because on silent migraine and thyroid issues. I did a lot of research on the combination of Effexor and propranolol and it seems a good combination, I then asked my neuro to double the dose of Effexor and decrease the dose of propranolol which he agreed to so I started on 150mg 3 January and decreased to 80mg Propranolol so far so good, I have seen a change really the last week as my body was withdrawing form propranolol and hiking u the Effexor so I think my level are evening out now. xx
Hi Amy, I want to say my symptoms have changed in the last 1.5 years of having this chronically- From having a rocking boat drunk sensation to a more weird derealisation sensation- on and off, and that’s with taking topamax… And I have to say this feeling is better than the imbalance drunk feeling i had before. So I believe the symptoms do slowly change. hang in there… and i will too lol
Thanks so much @lsengara really appreciate your kind words. I’ve done 5 months on pitz and I’m over it now I feel this is long enough. I see a new specialist in Feb 13 and I’m just going to ask to try Effexor I feel if I can get rid of this drunk disconnected feeling I can deal with the rest of it ! I’m glad to hear ur still seeing improvement and hopefully more so now you’ve gone up x
Thanks @123isall I wondered how you were ? What dose are you on now ? I still get the rocking but for me the main thing bothering me is the 247 disconnected feeling . Even if I could just get a break from it I’d be happy but I’m sure I will get there just takes time
Hi Nicola thanks so much for the reply . It’s so helpful to hear someone else has had this symptoms as some days I feel I am truly losing it !
I only got to 50 mg on nort and it didn’t do much pitz it’s now been 5 months at 3mg and still not much so I see a new doctor in a few weeks I think I’m going to start on Effexor and pray to go it’s the one for me!
I’m so glad to hear it’s helped you and u have lots of normal days . I tried prop got to 160 and didn’t feel much did this initially help you without Effexor? It really does seem so many do well on Effexor especially with this particular symptoms so I think I’m going to just go for it and hope for the best