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Here we go again


Lordy Gail, don’t apologise for ranting! We are tested to extremes sometimes. As you know healthy eating will help you loads, hard as it is to always be good. The difficult thing is to get motivated in the first place when you wake up every morning feeling like poo!But it can be done and you will do it. I am now facing a scan and biopsy for a lump in a lymph node in my neck so not too happy either, and I have developed damaged vocal cords so cannot speak properly or, worse still, play my wind instruments properly, boo b hoo!!! However, I am so stubborn I just get mad with the situation and then go off to the beach and play with my dog. Each to her own. Take heart Gail, you can get through this and Dr S will have a plan for you I am sure.


Here’s my update: Spoke to Dr S on Tuesday. He has outlined what needs to happen medication wise. I can come off the Propanalol:grin: I have to do it slowly, which will hold up the progression of my Gabapentin increments (is that the correct word?). I broke down whilst talking to him. It wasn’t that much of a surprise as I’ve been breaking down in tears for weeks. He was really good about it. He did say to me that even with the best medication and the best diet, that if I stay this stressed I will not get better. It’s to do with a close friend of thirty years moving without telling me (and a few things that have happened since regarding it). I’m utterly heartbroken. We never had a bad word. A letter outlining the medication change and also what medication once I’m on the top level of Gabapentin (if that top level doesn’t work). I only need to contact Dr S again if I’ve followed everything and I’m still suffering. My kidneys are only working at 50%, so I have a doctors appointment in about three weeks to discuss it. Hope everything goes well for your scan an biopsy. I used to play the recorder and clarinet when I was little.


Hello Gail

So sorry to hear about your friend moving. Maybe she didn’t want to upset you by telling you knowing how unwell you are? It is still sad though as friends are important.

On the health front, it sounds as if Dr. S is on top of things for you, fingers crossed. I hope the kidney investigation works out ok too. What is that all about?

I am waiting for my scans, I have one in August and am waiting to hear about the other one. It is supposed to be urgent!!!


Hi. She’s moved before and she told me. She moved to the coast last time and has done the same this time but a different place. She’s also got married (very recently I think) and I knew nothing about it… I found out in February she had moved, when I rang the landline and it was dead. Tried the mobile, same thing. Contacted a few people on her Facebook and found she had moved in December. We hadn’t been in touch for a while, but she was in care work and the pattern was that she would phone me when she had time. She was really long hours, and if I did phone I could pretty much guarantee she was either at work or in bed. I knew the house was up for sale, but the last I knew, they were looking for somewhere local. She lives with her fiancé and his mother. I got a message to her asking her why she had moved without telling me. She said she would write. Two months went past and nothing. Out of the blue, a facebook friends request! No message with it. Five days later I was losing patience so I messaged her (a nice message). Messaged for two days and then she’s disappeared! She’s still on facebook (every day). About a month ago I sent a message. Nothing bad in there. Told her I was crying as I was typing. It was a message from the heart. What did she do? She ignored it…She was a lovely person. I’m still as shocked now as I was in February. My kidneys- I’ve never had a problem before. I rang the Kidney Foundation, who said it can be down to a number of things. Overweight, Prediabetic, medication etc. She said my Gabapentin and Omeprazole can cause kidney problems and they think that’s why the doctor will want to see me. It’s bad waiting for scans. Urgent never seems to be urgent does it? Talking of waiting, I’ve just rung to see if Dr S’s letter has reached my Doctors. No they don’t have it. Please God, not a repeat of last time…


I am so sorry Gail, sometimes people let us down so badly when we need them the most and it hurts so much. There are no words to make it better but you will recover at some point. Having a chronic illness is tough and I sometimes think that when our friends and family are happy we make them feel guilty about that so they stay away. It is silly because we love them being happy but I think that is what has happened to friends and family members of mine, they don’t know quite how to deal with the situation. I used to try to be upbeat all the time but when you are already exhausted it is difficult so I then tried honesty and lost people along the way so I have no idea what the answer is.

I do hope the letter chasing doesn’t happen again, that would be too much.


“There’s nothing stranger than folk!” I haven’t cried since last Tuesday. Maybe Dr S hypnotised me in that phone call:open_mouth: I chases the letter up on Tuesday, and got a phone call this morning to say it would be faxed to the doctors by lunchtime. I waited till mid afternoon, and yes, shock of shocks it was there:astonished:I have to ring tomorrow to check that the lower doses of Propanalol are ready to be picked up. Wonder how long I would have been waiting if I hadn’t chased it up?


Well done you!!!

I have been chasing my so called urgent scan but am still waiting. Will try again tomorrow.

I am glad you are getting help at last.


Any luck regarding your scan? I had a phone call at 8 this morning to say my prescription was ready! Actually it wasn’t. The Chemist said they didn’t have it and to try Reception. Reception said they didn’t have it either. I said I wasn’t going to come back later due to my Vertigo I couldn’t walk it twice. It was found at the Chemist’s and I said please don’t tell me I have to queue again. She said no, they’re doing it now. Except they weren’t… Anyhow I finally have them. Nothing’s ever straightforward is it? They don’t manufacture a lower dose in sustained release form, so I am back on the dreaded original ones. I hope because I will be on a slightly smaller dose, that I will be ok. The 80mg ones caused big problems. I’ve got no choice so I’ll have to get on with it.


Lordy lordy, what a farse!! You must be so relieved you have them at last. I really hope they work for you this time and that you can get your life back.

I am still waiting, having been promised a call from Consultant. Dare not phone again so will have to sit it out. Good job (or not!) that I am patient!


What scan are you having, Margaret?


Hi James. I have a suspect submental lymph node (enlarged, solid and getting bigger) and as I have sjogrens disease I am more likely than those who don’t to have lymphoma. So you would imagine they would get a wriggle on but the scan and biopsy can only be done by a consultant and there are only two in the hospital and for some reason they cannot yet give me a date. I am exploring going privately but it means going through the whole process again.


Gosh, that’s tough … I hope it goes well


Thanks James. You kind of know me though, I just keep on going til I can’t!


Hello Paulus would please explain what do you mean by sleep shock? Is it that u get some shocks in ur sleep, or u can not fall asleep coz of shocks? How does that feel? Can u describe pls


Vertigo sleep shock…where you have a migraine attack while sleeping…causing you to wake up violently, feeling sick with pins and needles everywhere…i think this effects your heart and blood pressure causing palputations…5 users have it out of all the rest on here so quite a rare symptom of MAV.

paul x


Hello again. How are you? Did you get your scan or are you still waiting?


Hello Gail. Thank you for asking. I had them on Friday, one was a lower lip biopsy so I have stitches inside my mouth which is the most painful thing ever! The lymph node scan was interesting because they discussed it amongst themselves but wouldn’t tell me a thing and turned the screen away when I looked, so ANNOYING! It is my body after all. Now I just have to wait until they decide to let me know what’s what.

How are you? Did you have an amazingly brilliant time?


It IS annoying isn’t it? Like you say, it’s your body! I hope they don’t leave you waiting too long for the results. I’m ok. I took my last Propanalol last Friday. but my heart’s been racing. I think it’s wondering where the Propanolol is, even though I came off it exactly the way I was supposed to. My Vertigo is still the same. I have to wait till next Saturday before I can start and up the Gabapentin, so we’ll see how it goes. I haven’t been anywhere so I don’t know what you mean in your last sentence. You’ve got me wondering now whether I’ve been and forgotten lol.


Sorry Gail, it was me having a moment! I hope all goes well with the new med and that it calms the heart too-we only ask for small miracles!!


Hi there GailM.
I don’t know whether your neurologist is the same as mine. Mine has the same name. Medway hospital?
My MAV symptoms came back too so was referred to him. I know you cant take them but I was on Nortriptyline and Prochloperazine when I saw him about a month ago. He told me to increase the Nor but completely stop dead with the Proc. I saw a physio last week to start vestibular retraining, but have been unable to start the exercises ive been givn due to my symptoms being back to their worst and told theyd make me worse if i did them when i wasnt well