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Post by Elizabeth on May 3, 2005 12:19:02 GMT
Hello, I'm Elizabeth and have been suffering from severe post natal illness since Christmas. I am stuck in my own head with spinning thoughts, shaking like a leaf and don't know how I can ever return to normal. Am starting yet another different medication this week but don't see how it can work. It is like I'm on a roundabout in my mind and cannot get off. My computer (my mind) has crashed. What am I to do? anyone out there having a similar experience? Would be comforted to hear from you.
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banana
Senior Member
The good days are back!!!
Posts: 361
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Post by banana on May 3, 2005 12:58:51 GMT
Hi Elizabeth. Its so good that you have found us. So many of us have been there and for many they still are. I was diagnosed at christmas also but i am pleased to say that I have made a dramatic improvment. I too spent a lot of time lost in thoughts ( really horrid thoughts that consumed me all day ) and found myself shaking from fear, sweating etc... I was very physically ill with my PNI, so bad that I was convinced I was dying. Ask anyone on this forum who replied to me - I was a wreck over the first couple of months. And of course you believe that you are on your own and no-one else has felt like you - but they really do! Do you want to tell us a bit more about how you feel and what worries you etc.... you may find that some of the girls will have experienced exactly the same symptoms or have the same thoughts and be able to offer you advice. The forum helped me greatly and I am eternally greatful to all the wonderfukl women who have helped me through the very rough times. Take care from someone who thought it would never get better - Lana xx
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Post by Veritee on May 3, 2005 18:53:11 GMT
Dear Elizabeth Welcome to this forum, as Lana said – do you want to tell us a bit more about yourself and what you feel? I certainly have felt like you describe – I felt I was on a never ending spinning wheel that I could never get off. I could not see how I could ever have a ‘normal’ life – I could not see the nightmare and the horribleness of what I was going through could ever end. I will say to you that it will – it did for me and it will for you - but I say this knowing that hearing this is not really any comfort when you are suffering as you are, but we do hear what you are saying and would like to try and support you in this. What is the worse symptom that you are enduring right now – what disturbs distresses you most? Do you live alone and do you have support? You say you have ‘spinning thoughts’ are these what we call on here the ‘what if’ thoughts or scary thoughts about harm to your child or yourself or someone else you love? Or are they something else? They may not be this at all, perhaps your thoughts are about your fears, your health or something quite different? But whatever your spinning thoughts are - would it help to tell us a bit about the thoughts you suffer? Many of us on here have had thoughts that just won’t go away, thoughts that come unbidden and seem to have a life of their own and whatever they are about – are scary and uncomfortable for us. It was one of my worse symptoms. Have you read the ‘Dreaded Thoughts’ section: veritee.proboards7.com/index.cgi?board=thoughtsI do hope this forum can help you to get through this All the best Veritee
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Post by Elizabeth on May 4, 2005 16:39:53 GMT
Dear Lana and Veritee,
Thank you for your replies. I have just typed quite a bit and come across an error so I hope this sends this time! The spinning thoughts are conversations in my head that only let up if I really engage my brain in something or am asleep. Otherwise I have a constant babble of dialogue that goes on in my head. Most peculiar and so isolating. I don't think normal stuff.
Hope you get this
Elizabeth
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Post by Veritee on May 5, 2005 9:43:15 GMT
Hi Elizabeth
I have to say that as well as intrusive thoughts one of the symptoms of PNI ( not quite as common) are repetitive, spinning, chanting, whispering fast thoughts that are always in your head unless as you pointed out you concentrate on something or some find that loud music or loud conversation helps.
These thoughts are often worse at night when quiet or when trying to sleep.
This was not one of my major symptoms throughout, but it was the first symptoms after the birth that made me realise that perhaps things were not 'right'
I first experienced them in my hospital room as I was in for 10 days after a caesarean - and I got absolutely nil understanding of how distressing and intrusive this symptom could be - or even any understanding that some thing was wrong. I was just told to
'go back in my room and try to get some rest'
Off course as they were worse when alone and when trying to rest, this was the worst advice and I ended up with a full blown panic attack as they just would not go away whatever I did.
Can you decipher any particular words or sentences from these thoughts? I found that I could sometimes but mostly they were just like whispered or background conversation that you hear in a big room of people, but rarely make out any words
But others have said they were repeated commands and sometimes distressing commands like to do something or about someone.
What are your thoughts like? Can you make anything out or are they a hubbub of thoughts that you can not hear individually?
In the hospital room was the first time I had this but I have to say that thankfully unlike you, I did not have to endure this all the time as you are having to
I would only get bouts of this every month or so for a few days - but I have to admit that this was quite unendurable and if I had to put up with this all the time I think I would have been even more distressed than I was.
The thoughts that I had were mostly of a different nature, i.e. unbidden uncontrollable thoughts of planning how to kill or main my child or myself .
However I have been told by a medical trained person ( I have someone now who will give advice to the forum - a GP) that their are medications that can deal with these kinds of spinning thoughts
(I have not heard it is effective with the thoughts I had mostly but you never know) - but the medication is not the usual anti-depressants but the sorts of anti- psychotic drugs usually used for psychotic symptoms.
Do not be alarmed by my saying this - you are not psychotic at all; nothing you describe is like this at all even the spinning thoughts.
But sometimes if Anti Ds fail to sort a very distressing symptom like this - a short course of these types of drugs sometimes do.
I am not a doctor or medically trained so I can not advice what they are but this is the advice I have been given about these types of symptoms, and therefore I think if the new drugs do not work you should go back to your GP and tell them again about your symptoms and the how distressing they can be and ask if their is any other kind of medication that could work.
If you like you can print out this reply.
I do know how distressing this sort of symptom can be and if you can not stand it any more you must get some effective treatment. I do not think anyone who has not experienced this really gets how much it affects you and your life - so you have to make sure you GP understands.
Having said this and re-alliterating again that I am not medically trained and should not recommend medication, but by chance I found that an - antihistamine called Avomine that I was taking for somhting else - stopped these thoughts altogether!!!
which is not that surprising as the active ingredient Promethazine teoclate is distantly related to one of the first anti- psychotic drugs ever, that is 'Chlorpromazine'
Yet Avomine is available over the counter at any chemist for travel sickness ( I was talking it for a different reason)
So my solution to these thoughts was to take one of these at bedtime - they made me drowsy, but worked.
I am not medically trained and really I have no intention of recommending you self medicate yourself with something not prescribed and not intended for the job.
However someone else I am supporting (by post) recently tried another antihistamine based medication which is available over the counter to help her sleep and that was Nytol ( not the herbal, but the anti-histamine based version)
She tried it for similar reasons from you - that is she was not sleeping due to the thoughts and it stopped the thoughts at nigh long enough to help her sleep.
But she like me with Avomine - found that this that it quieted the thoughts through the next day.
However like me she is not on anti depressants and while Nytol is available from any chemist over the counter for anyone to buy IF YOU ARE ON ANTI DEPRESSENTS YOU MUST CHECK WITH YOUR GP BEFORE TRYING THEM.
But if your GP says its OK to take them with what you are on prescribed - anti- histamines might like they did me and a few other at least give you some respite from the circulating thoughts to allow you a good nights sleep free of them.
However you can not take them in the day unless it does not matter if you are drowsy as they do make most people sleepy.
But if you want to try Nytol for sleep before you take anything with prescribed medication – please as a pharmacist or GP if it is OK to take them together
I hope you are feeling a bit better today
All the best
Veritee
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Post by annag on May 5, 2005 11:49:52 GMT
Hi Elizabeth
I hust read what your posts and sympathise with you wholeheartedly as this was how it was for me a good deal after having my second child, not voices so much as thoughts that seemed uncontrolable and i could not stop. I ended up very distressed and my doctor ended up treating me with dothiepin which is one of the older style anti- depressants with a sedative side effect. These did work for the thoughts but i was left feeling rather out of it and dazed at times which is not ideal when you have a child or children to look after. I'm sure there is a drug available that would help to reduce or stop these thoughts so I would keep trying as you are and not give up hope that this is totally treatable. I would also like to reasure you that you are not alone with these symptoms and other poeple will have experienced similar for certain.
Veritee what was that you mentioned about a GP on the site helping out? I think that is very good news well done on achieving this.
anna
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Post by Veritee on May 5, 2005 16:28:52 GMT
In reply to Anna about medical advice:
Yes I have a GP who is willing to give advice if I ask him, I met him through a friend socially. But he is not doing this ‘officially’ I just wish I could achieve this!!!
He is not as yet willing to put his name to the site and I do not know if he will - I guess if he does he would want to be comfortable with it and there are implications for those employed by the NHS apparently.
However this is something I feel strongly about - that many women with PNI quite rightly ask about medication and although over the years I have become quite knowledgeable, have many sources of information and I try to give factual and objective answers to these enquiries - I am still not qualified to give advice - only an opinion.
So I do want a qualified person to call upon.
While it is an improvement that I have found a doctor who is willing to give 'unofficial' advice I really want a medically qualified person to put their name to the site.
This is proving quite difficult - although I have also recently met another qualified GP also a male who indicated he would be willing to do this and in addition while I have never asked her to do it officially my niece is in fact a registrar in a big London hospital who I intend to ask.
I have not before as I did not want to put someone in my family in the position of feeling they have to refuse - but I really think we need this - so I will ask her and also my husbands cousin who is a doctor too.
But for some reason putting a name 'officially' to a forum like this seems to present doctors and nurses with problems (I even have a very close friend who is a CPN, she has often advised me in the background but is who is not sure she is able to do this officially) as they are worried it will have implications with their employers and no one as yet has wanted to go the extra mile to see if they can openly associated themselves with this forum.
I have high hopes however that my CPN friend will and perhaps one of the GPs I now am in contact with.
But in the meantime while I check things out with a medically trained person whne I feel I need to - but I can not yet name them.
But you might have noticed that because I can check what I say out I have recently have more confidence in replying to questions about medication.
I did not in the past to feel I could say much and it was only when Deborah joined the forum that as she was a qualified nurse I felt she could answer such questions, but now she has gone because I feel women need to have inpartial answers to their questions about medication, as medication when you have PNI is a very big part of your life
- I now answer what I can with advice from people behind the scenes.
But I do wish someone would go that extra mile and support us openly – I am working on it.
If any of you know a GP etc who would be available for advice ‘officially’ perhaps you could ask them to contact me?
All the best
veritee
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Post by wendabell on May 6, 2005 15:50:51 GMT
hi elizabeth, welcome hunny and its strange but as im recovering now i am actually forgeting i was ill but i was so much like you it was unbelievable. All the things you describe now and i bet there is so much more you feel embarrased or to scared to tell us yet i have felt to. It will go you will get better. There are only a few of us that have had it for years and years and i have to admit i thought i would never find the old me again but i thought she was lost for good but i am back. I know that where you are right now you find this so hard to believe , i know i did.All these lovely people on here telling me hey you will recover and i was so low i could not see this especially with my head buzzing with thoughts cruel thoughts.the sleepless nights the lack of interest with my kids my hubby..It Was all so awful many times i just wanted to dissapear,to run away and the ground to open and swallow me up. Elizabeth if you ever need a chat hunny im around,i do hope you find support and comfort on here.Nothing you say to us will shock us as we have all been or still there right now.We are all mums with pni and the girls on here are fantastic and we see eachother throught the good times and the bad. Post soon hunny and tell us more about your self love and hugs for now wendy.x.x.x
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