lifes ups and downs

good news, my docter finding out why its taking so long to see a aps specilist. bad news is that my husband has ended our marriage,mostly due to my illnesses. found out that i have a gland on my kineys.says its due to having hughes sydrom.has anyone heard of this? started amitrityline

yesterday but my head is sore today. will it inprove? my all my syptoms were bad tday.was in town on my own and it all stared so sat down,in the cold waiting for it to finish ( mom) to the rescue as couldnt drive. so no money,no husband, no wo working (yet) but still have a roof over my far!!!!!!! sorry for sounding of but this site makes me better. thanks stacey. :-\

27 Replies

  • Hi Chapman

    I'm sorry to hear you news.

    Amitriptyline is something that you get used to so you won't be so drowzy when you get used to it.


  • hi.thanks been drowsy at this point is a good better if it was the stuff hay give u when u have an opparation.!!lol. stacey

  • Hi there Stacey

    Sorry to hear hat life is throwing everything at you currently - please make sure you draw your friends and family around you, and I hope your medication helps a little, it takes a time to adjust to these things. All the best to you, and keep us in the loop as to progress made in all areas of life. Mary F x

  • and also one further point, glad to hear about the GP helping... as this may be the key to seeing that correct specialist and feeling a little better! xxx

  • thanks mary. i will keep u all informed. only got my mom.:-) stacey

  • So sorry you have all this to cope with

    Thinking of you

  • thank you. :-)

  • Hi Stacey. Things will improve with Amitriptyline. I've been on it a while now and as it makes me drowsy, I find it best if I take it at around 9pm. I usually go to bed around 10pm and find the med helps to get me off to sleep. Also, it can make you feel very dry in the mouth, so make sure you have plenty of fluids and a drink by the bed for if you wake In the night. Hope your feeling better soon, big hugs Sally x

  • hi sal.thank you.will do that. as for been drowsy than thats a good thing. :-)

  • Hi Stacey, what ever happened to ' in sickness and in health ' my x did the same.

    I hope your Gp pushes you forward and you get the help needed,go steady on the med until you get used to it.some tolerate it better than others.

    Your in my thoughts, big hugs. xxx

  • hi jillymo. thanks for ur support. think he wasnt lisning to the vicker and thought he did his 12 month duty out of 7yrs. there is some men out there that dont run, when the going gets tough. his loss as i WILL get better.iv bete s.....t before, i can do it agan. thanks. stacey:-)

  • Hi Stacey: You're darn right you can! I actually found life so much easier and happier once I resigned myself to the fact that my ex-husband was the one who was sick even though I had the illnesses (mostly inability to carry a baby to term). Once I was rid of him, I was able to concentrate on making myself better. He served his purpose though. And a much better husband was waiting out there for me.

    I am so very glad you have your mom to at least fill you in on the family history. You be sure to write it down for your children later when they have their own kids. Otherwise they could go undiagnosed should it "cluster" toward them. They won't say it is genetic. They will only say it seems to cluster in families.

    I was on Amitriptyline for about 7 years. They put me on it when I had my CVA to prevent seizure during sleep and a daytime dose as well. After 7 years I found myself on over 30 pills and mentally deteriorating fast. I walked into my doctor's office and told her to wean me off all medication except that which allowed communication (stroke cause stuttering and right hand tremmor) and that which calmed the tremmor. Clonozapam does that. Also, I asked to continue pain and comfort meds. Fentanyl and vicodin do that, which I am still taking.

    I remember Amitriptyline packs quite a wollop if you mix it with even the tiniest bit of alcohol so heed that label! Don't mix this one with even a little alcohol. It will make you very dizzy and you will fall in a deep sleep for a long, long time. That's what happened to me at least.

    What sort of gland on your kidney? No, I have never heard of a gland on anybody's kidney before. A cyst? A tumor? Perhaps this is one of those words where the Americans and the Brits have different terms for the same thing. What does the doctor plan to do about it? Is it shrinkable with meds or does it have to be excised? Will they do a biopsy or have they already? I know, lots of questions and you can barely stay awake. I am sorry.

    Believe that all things happen for a reason. Unfortunately, we only get to understand in hindsight - if at all. Concentrate on your health, mental and physcial, and prioritize that first. Fit the business with your husband in when it suits you and you feel you can make a reasonable decision. Otherwise, it is only reasonable he can wait until you feel secure in any decision you make. Do let us know how you are getting on with all of it. It seems like a whole lot, but believe me you will get a handle on it.

    Warm wishes,


  • hi thank you for all your info. the doctor just said that it was a gland and its ok but reading ur info then when i see the specilist then i will ask again. i dont drink anymore due to been on worfrin and been gluten free so no worrys there.. me and my husband are still sharing the house,at the moment its working but time will tell. we own the house which has plenty of space so i think it will work for now untill its sold. i forget stuff so easy and tirered alot. im going to stay calm,get getter and get my life sorted. thank you canarydiamond. best wishes to you,x

  • My ex also walked out 4 months after burying our son , who was born asleep , i had multiple P.E and was so ill . had also just lost my beloved nan . Trust me i became so much stronger and its a relief to be able to have your bad days without having to keep someone else happy who does not understand how this condition can effect you . best wishes stay strong x

  • hi dutchess. thank you for your support. im sorry for ur losses, its sounds like such a terrabe time. that is so true, when you have your bad days without having to worry about others i allready feel less presure at the fact that i dont need to keep him happy. he wasnt even willing to find out about aps or talk to someone about us and the affect on our marriage. thank you. i hope and wish the best for you.take care.x

  • thanks for reply , my ex went to work and rang to say he was not coming back , i was devastated , now i think what did i ever see in him . but it takes time . im more than happy to chat to you through your hard times , seeing as had similar experience , x

  • hi thats alfull,mine txt me before he went to work saying, that its over. why cant thay talk instead of (long necks and feathers,like apsnotfab qoited) and say that thay are finding things difficalt.. no shame in asking for help. i agree with u as im slowly starting to see a side off him and ask myself, whot did i see for all those years. i do have my days where im struggling. its very hard to get my head around no marrage and aps and other health stuff as you know yourself. im very good at having a happy mask having to stay in the same house as we own it. but his carrying on as normal,think his got blinkers on!!!!. anyway at leasted the sun is shinning in yorkshire today . how are you .how long have u had aps and how do u cope???. do u live in the uk? speaking to all you guys is a god send. best wishes dutchess.xx

  • I have had APS for 7 years , mostly i cope pretty well , untill the last 3 months as my GP took me off warfarin . now i have been off work for 3 months with MS like symptoms , has got me down but i try to stay positive , can be scary at times as we all know . yes im in the uk im in Essex , Yes i agree the site is good , you can chat to others who understand , You said about your mum being there for you , my mum has been a god send with me , bless them both x

  • ill second that. lol.x

  • Unfortunately some peoples only coping mechanism is to grow long necks and feathers and then bury their heads in the sand and then run......its a reasonably common phenomenon!!

    Sorry its happened to you but it shows you are made of much sterner stuff. I too am of the belief that somethings happen for a reason, however hard but the frustrating thing is perhaps not knowing what that reason is.......... xx

  • hi apsbad. if only he told me how he felt instead of saying nothing. he wasnt even willing to find out about aps so i guess the long neck and feathers has been saving up for a long time. (12 months off it anyway) i will get better and cocertrate on myself,im lucky to have the support from my mom and all you guys. some ppl dont have that!!! best wishes.x

  • Yes you have a reason to really self indulge and be selfish now without worrying about anyone else but you...all you!!!! :-D x

  • Hi Chapman you sound a survivor hun ;-) you will get better, stronger and find someone who deserves you!!! Thinking of you sending you hugs kathy xx

  • hi kathy. i need to be positive or ill crumble. thanks for ur kind comment. :-)

  • I dont know about glands but I have a large cyst on my right ovary and cysts on my kidneys and poles of my kidneys. I dont know what that means, or what caused them, or if it is polycystic syndrome?

    As for Amytriptyline. I was prescribed them but when I read the leaflet I thought there is no way I will take them, as they can cause suicidal effects or self harm..

  • hi thanks for info. i was given amitline before thay told me i had hughes. started taken them and my headace wasot warse. everytime i moved my head would feel like contraking and under preshure. very sore. today i havent taken it. so see whot happens.doas doc say whot ur syst is? take care.stacey

  • Hello Stacey. I resisted starting amitriptyline. I didn't want to add another drug. I was so tired of constantly adding doctors, treating new problems/diagnosis , new medications. I was tired of having more bad days than good. However my doctor told me amitriptyline would treat my migraine and depression from APS. It took a few weeks to take hold. I did take it at night because it made me sleepy. After the first month I really began to notice the mood elevation. It cut my migraines to rare instead of often. Best of luck to you kathy

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