I’m so sorry to do this on here, i try to be as positive as i can, but this last week has been hell. I feel terrible again. My propranolol doesn’t seem to be helping yet, i have brain fog constantly, and so badly that i’m forgetting everything. The room is moving CONSTANTLY as usual, but much more violently. I feel like i’m moving constantly, as usual but again, much more violently. I am finding it hard to use my laptop again, to be motivated to eat because if eel nauseous. Standing or walking is problematic once again, and i’m exhausted.
I know that coming off amitriptyline will be part of this. But i am doubting my diagnosis once again, as it seems as though no one has this as bad as me? Or do you/ have you? i just need some hope i’m not alone here.
Thanks, and sorry for the downer. xx
Oh no wtc, poor you honey. Have you called your doctor? I’m so sorry your feeling like this. Just try and remember this will pass and we all WILL get better in time. Poor you xx
WTC, have you spoken to your neuro about this and whether you should stay on the Propranolol? I know we have to give these meds a fair trial but if it is making you feel a lot worse then maybe you should move on to another med. From my reading, most people who find Propranolol helps them seem to be ok on it right from the start so it makes me wonder if it is the right med for you.
About the diagnosis, do you feel the doctors have ruled most other things out? Did you have an MRI scan of the brain and those kind of things done at the beginning? I know you are under some great doctors so it is very likely to be MAV, just you haven’t found your med yet. People can have this to varying degrees, for some it is milder than others, but I don’t think having it badly means it can’t be MAV.
Hang in there. I have a feeling it could be third time lucky for you. Didn’t you say you would try Topamax next? I don’t know why but I have a feeling you will do better on that xx
Thanks guys. I spoke to my GP today and she said she’s not sure what to do and doesn’t want to advise anything before i’ve spoken to the neuro. So i’ve emailed Linda Luxon and hopefully will hear back.
Jem, i think you’re right. I’ve just angered the MAV brain somehow, and maybe it would be topamax next, but i think they might go for pizotifen. What are you on at the moment?
Anna, thank you i know you’re right. We WILL get there in the end xx
I’m on 35mg Nori and 100mg Gabapentin. Just started on the Gaba and got to work up to 300mg a day to begin with. Hope you hear back from Prof Luxon soon x
Hey WTC. I have been there for sure, you’re not alone! In Feb/March this year I had times where I was utterly horrendous, bed bound, constant panic attacks, unable to walk, stupidly still trying to commute to london when I could get out of bed, the number of times I ended u0p crying on the tube or at stations, unable to even take the next stpe…urgh. In light of my new diagnosis and treatment, I am now having nearly dizzy free days fairly regularly and the fatigue is getting better slowly…you will get there for sure! I wonder if it’s less to do with the propranolol and more to do with coming off the ami??? Maybe it was helping more than u realised? I know you’re really med sensitive so taking things v slowly but I started on 80mg propranolol 2 x per day and upped it to 160mg 2 x per day fairly quickly!! I wonder if u should maybe be on both…??? Dr S said to me it’s a great combo but many people never push to a therapeutic dose on the ami/nori…he said for many it’s quite high…anyway, you WILL improve either way. xx
lizzie so glad to hear things are going well!!! keep us updated on your progress- it sounds like you are treating mav and lyme at the same time right? do you think it is the antibiotics making you better?
Hey Sarah, no not taking anything at all for MAV at the mo. I was advised to take the gabapentin but haven’t as the improvement I’m seeing at the mo is amazing, like night and day compared to where I was!! I hope it continues…fingers crossed. In my mind there is absolutely no question that the antibiotics have turned things around. xx
that is FABULOUS NEWS- I think it is smart to keep going on just the antibiotics to see how far you get- how long have you been on on them now? So happy to hear you are doing well!!!
Exactly…just gonna keep going with them as long as they keep working!! How are u? xx
i’m ok…starting zoloft- been on it a week- might be making me more dizzy at times but not sure it is the zoloft???
so i have been doing IV antibiotics for 3 months now for potential lyme and they have done NOTHING- so I don’t think lyme is contributing to this- going to stop next week- glad I tried it though…man the IV crap is a pain to do!!!
how long have you been on the antibiotics? what are you taking again?
so sorry you’re feeling so horrid
Sarah - I think I said this before, but just in case - someone can treat Lyme (even with IV) forever and NOT make progress if they aren’t treating the appropriate coinfections. I have Babesia and Bartonella as well and it is very common for ticks to carry multiple infections. If you ever want to revisit things, I’ll be happy to answer any questions or direct you to groups where you can ask these questions as well. Whatever you decide, I wish the very best.
thank you lisa- how are things going for you?
thx. I am hanging in best I can. I’ve been sick for so many years, and definitely have Babesia and Bartonella on top of the Lyme, so need to treat with antibiotics and antimalarials, etc. going to be a long road. Just wish so very much I found out sooner when I wasn’t so ill. but, things are going as well as could be expected with treatment, I guess. taking it day by day. learning more and more about tick-borne disease every day and fighting hard to get well.
i forget- did you actually test positive for lyme and those 2 co-infections? how long have you been on the antibiotics now? i know it can be a frustrating waiting game but you are well on your way it sounds like. please keep us updated on your progress and i am crossing my fingers that you see improvement soon!!!
I’m going to PM you a more detailed response. Thanks VERY much for your kind words!!!