View Full Version : How does one deal with real health problems and have GAD and agroaphobia.
I will try to make this short but as I have mentioned recently I suffered a heart attack and I also have major teeth reconstruction to be had which was started 3 weeks before my HA ,which is on hold for 6 months,because I am on blood thinners.
I am also partially through urinary and bowel investigations and because it is not suspected that anything is sinister I am on the so called NHS waiting list which could be anything between three to six months and it has absolutely shot up my anxiety and stress levels and quite frankly I can't deal with it.
As some of you know I also have a very sick grown up daughter and my wife is torn between the two of us, and quite frankly can't deal with it and my GP just says that my extreme anxiety will die down when all the tests have been done, but won't give me anymore drugs to calm me down. (camera up the front for a flexible cystoscopy and back for a flexible sigmoidoscopy) I had the first urinary/prostate tests last September and am still in a lot of discomfort,and the cystoscopy is on Tuesday week, and the other test I had on March 2nd this year and a letter would be sent that the second part would be in 8 weeks, but as of now no appointment, and again the NHS warn that if one is on blood thinners the consultant should be told as it could lead to bleeding.
In both cases I have told the consultant who will do the tests and they aren't bothered,but I am.
I wrote to my cardiologist who said from his point of view my heart had recovered and he wasn't concerned (which was a strange answer)
Of course having stopped smoking as well since my HA four months ago I am eating more and to be honest it is just too much to deal with.
I am sleeping 2 to 3 hours a night and my stomach is killing me.
Can anyone offer any advise ? I am not looking for sympathy but as I said earlier I am at my wits end.
Hi Ricardo
I don't know that I can actually offer you any advice. I'm in a similar situation to you in that I have had GAD, agorapgobia and health anxiety for years and now that I was much better I am ill for real and ironically something that I was never worried about which just goes to show...not much point in worrying :unsure:
---------- Post added at 17:57 ---------- Previous post was at 17:47 ----------
My best friend is a therapist and everytime I get scared or anxious I give her a call and she says to me: there are two parts here, one is your real illness and the other are all the extra symptoms I have because of my fear of how I'm feeling, what will happen...
She then says that what will happen is not in my hands, so there is no point in worrying about it.
She tells me off for using Dr. Google. When I get very anxious I do "tapping for anxiety" or listen to Claire Weekes tapes.
I don't know if this is really advice but it is what I do. Unfortunately I can't walk at the moment, if you can I would recommend walking, burns off anxiety and clears the mind.
Take care Ricardo xx
I thought I would go back to this thread.
The positives are that both investigations re bladder and bowels went fine but it hasn't eased my anxiety.I start my teeth treatment in 3 weeks. My daughter is still the same, good days and bad days but still no definite confirmation that she has Sjogens Disease,we are going round in circles.
Today is my last of 4 CBT sessions which if anything have made me more anxious.
I wish to go back to health anxiety which is a huge topic on NMP. i have said before that having had a heart attack does one advise someone or possibly advise and make them more anxious or stay away from the subject all together.
So many people on here seem to be quite young with small children and suffer anxiety to a certain degree.Some have blips but others are dependent on others to help them through every single day.
Some people like to read and comment about this, whilst others not, so it really is difficult, and being selfish for a moment for people like me and others who have high anxiety 24/7.
I haven't given up but as you get older it gets that much harder and illness not linked to anxiety creeps in.
I just wanted to get this off my chest.
bernie1977
29-10-15, 15:28
I think that with all you have going on in your life it might be best for you to avoid the health anxiety forum posts as I can't see how reading some of that stuff can have a positive impact on your day. I know you like to help people but I know how hard you're finding things at the moment so it might be best to step back xx
Some of us on here have diagnosed health problems which we may or may not choose to share with others on NMP. The HA board in general in my opinion is not conducive to recovery and progression and has the potential to irritate those whose problems are defined and ever present.
I think we deal with diagnosed physical conditions by getting ourselves checked out by trusted consultants and by taking care of ourselves with diet and light exercise. That's all we can do. As for the mental health side of things, I think it's a gamble posting anything on the HA board. It is such a shame and I really hoped that people with diagnosed health concerns would feel confident enough to post but I think their posts would get swallowed up in the general reassurance-seeking pleas which seem to dominate. And for giving advice, I think the vast majority just ignore it and carry on seeking reassurance.
Some of us on here have diagnosed health problems which we may or may not choose to share with others on NMP. The HA board in general in my opinion is not conducive to recovery and progression and has the potential to irritate those whose problems are defined and ever present.
I think we deal with diagnosed physical conditions by getting ourselves checked out by trusted consultants and by taking care of ourselves with diet and light exercise. That's all we can do. As for the mental health side of things, I think it's a gamble posting anything on the HA board. It is such a shame and I really hoped that people with diagnosed health concerns would feel confident enough to post but I think their posts would get swallowed up in the general reassurance-seeking pleas which seem to dominate. And for giving advice, I think the vast majority just ignore it and carry on seeking reassurance.
I agree with this Pulisa. Just as an example. There was a member here that hasn't been on the boards in a long time that contacted me. He has been in recovery for a while and echoed what you said above.
He thanked me for my direct and no nonsense replies and advice (I basically said quit the drinking and smoking, get off the boards and get help!). So he did and is doing great now. He said he has an occasional blip but now has the tools at his disposal to fend off the dragon. He also said the same thing about the boards and reassurance seeking and how it kept him in the anxiety loop and reading other posts just fueled his HA.
I do believe that it's good to know you're not alone in your struggle and there's a certain cathartic benefit to writing out your fears but unfortunately, the reality is that it can and does keep many stuck in their illness. There are countless examples of this in all areas of the forum.
In reference to the OP.... I did have some depression and "scanxiety" issues after my illnesses. How I dealt with it was one on one therapy, some CBT techniques and a chill pill when needed. The techniques in CBT work for me not only for helping to rationalize physical symptoms and my reaction to them but also have helped in everyday situations that can cause undue stress (like work for instance).
Positive thoughts
MyNameIsTerry
29-10-15, 23:08
The question you seem to be asking is whether you should offer advice or whether as a heart attack survivor you would triggering because of this.
I don't see how offering good advice is a bad thing. You have real experience of what it feels like and all that comes after so when you see people talking about things like palpitations, you know whether it feels like something more which the rest of us don't.
Why would you be a trigger? As you are an agoraphobic I could say the same thing about people on here talking about their experiences & worries of the world outside your safe zone. Why is HA any different? As a GAD sufferer I'm surrounding by triggers daily and on this forum. Why are you asking this question but no one is about the rest of us?
Can you see what I mean?
Hi
I would advise anyone having any form of heart/bp problems
To get an appointment with their gp and get assessed.
I would also ask for an assessment at a cardiology clinic...ONCE!
if you get the all clear after thorough checks.
Then accept the medical findings and when you have paplitationscetc accept that it's 'just' Anxiety:shrug:
Has anyone ever offered you psychological support as regards life after a heart attack, Ricardo? There must be many aspects mentally and physically which would be very challenging even without pre-existing GAD and agoraphobia?
Accepting that your heart is now functioning satisfactorily must be difficult psychologically even though physically you have been assured of this?
Has anyone ever offered you psychological support as regards life after a heart attack, Ricardo? There must be many aspects mentally and physically which would be very challenging even without pre-existing GAD and agoraphobia?
Accepting that your heart is now functioning satisfactorily must be difficult psychologically even though physically you have been assured of this?
No pulisa, only an exercise programme with a 6 month waiting list in another borough.It is quite common to go into depression as well when the realisation sinks in.
---------- Post added at 10:43 ---------- Previous post was at 10:35 ----------
The question you seem to be asking is whether you should offer advice or whether as a heart attack survivor you would triggering because of this.
I don't see how offering good advice is a bad thing. You have real experience of what it feels like and all that comes after so when you see people talking about things like palpitations, you know whether it feels like something more which the rest of us don't.
Why would you be a trigger? As you are an agoraphobic I could say the same thing about people on here talking about their experiences & worries of the world outside your safe zone. Why is HA any different? As a GAD sufferer I'm surrounding by triggers daily and on this forum. Why are you asking this question but no one is about the rest of us?
Can you see what I mean?
I can see what you mean but I don't agree. My heart stopped beating for 19 seconds the evening after I had the stents put in that was a severe shock and also I have found out since that people are just not aware of the many different forms a heart attack can take, which I won't go into now.
Yes people with health anxiety often think they are going to die but in practically all cases they recover as it is anxiety.
There is a distinct difference when one is talking about the most important organ in your body and as you say I have suffered a HA and have GAD so that's a double whammy.
CBT does nothing for me and someone on here suggested my problems are so deep rooted CBT would just pass me by, and it has done. I had my last session yesterday (last of 4) and as soon as the therapist has gone I have forgotten every thing he has said.it just doesn't sink in and I regard myself as being reasonably intelligent.The subconscious just stops me grasping any therapy whatsoever.Sad but true.
No pulisa, only an exercise programme with a 6 month waiting list in another borough.It is quite common to go into depression as well when the realisation sinks in.
---------- Post added at 10:43 ---------- Previous post was at 10:35 ----------
I can see what you mean but I don't agree. My heart stopped beating for 19 seconds the evening after I had the stents put in that was a severe shock and also I have found out since that people are just not aware of the many different forms a heart attack can take, which I won't go into now.
Yes people with health anxiety often think they are going to die but in practically all cases they recover as it is anxiety.
There is a distinct difference when one is talking about the most important organ in your body and as you say I have suffered a HA and have GAD so that's a double whammy.
CBT does nothing for me and someone on here suggested my problems are so deep rooted CBT would just pass me by, and it has done. I had my last session yesterday (last of 4) and as soon as the therapist has gone I have forgotten every thing he has said.it just doesn't sink in and I regard myself as being reasonably intelligent.The subconscious just stops me grasping any therapy whatsoever.Sad but true.
As a fellow heart attack survivor, I can tell you I had quite a bout of depression after my 1st heart attack and triple bypass at 47. Yep... 47. And it's very common for a survivor of a serious illness to experience depression and anxiety. I wasn't offered psychological support but I knew I was depressed, spoke to my GP and asked for help. I was on Zoloft for 6 months and did some pretty intensive one on one therapy and got through the valley.
I recognized the same issue after my 2nd heart attack and cancer and sought help as well. This time, I added the CBT and an as needed chill pill.
Truth be told, while this worked for me, everyone is different. I hope you find solutions.
Positive thoughts
nomorepanic
30-10-15, 11:49
Has anyone ever offered you psychological support as regards life after a heart attack, Ricardo? There must be many aspects mentally and physically which would be very challenging even without pre-existing GAD and agoraphobia?
Accepting that your heart is now functioning satisfactorily must be difficult psychologically even though physically you have been assured of this?
I just wanted to give my experience as well.
As you will probably know I had a heart attack as well 7 years ago but at the time I had a Crohn's flareup and that was more life-threatening than the heart attack so care for my heart took a back seat to be honest whilst they concentrated on the crohn's.
9 months later they finally started concentrating more on the heart and you get to go on a cardiac rehabilitation programme which was 10 or 12 sessions I think. They teach you about diet, medications and you also do a controlled exercise class. I had to travel about 24 miles round trip to go to this once a week.
The realisation hit me one day when I went to see the cardiologist as I naively thought ok well I had the heart attack and a stent was put in and now all is ok and controlled with the drugs.
What I didn't realise was that the left side of my heart is irreparably damaged so I no longer have a fully functioning heart. That suddenly hit me and knocked me for 6!
You don't really get any counselling for your brain as such - the doctor's just concentrate on the medications side of things.
I am pretty sure I am on the same drugs as Ronny will be - 5 different ones a day plus my crohns medication.
I started getting really bad panic attacks again after this and was put on the list for CBT but a year later I still didn't get the appointment and by then I had sorted myself out so didn't need it.
Do you get the British Heart Foundation magazine Ronny? That has a lot of useful articles in it as well.
I think that you need psychological support regarding your reaction to your heart attack rather than a quick fix CBT programme on an entrenched anxiety disorder which was never going to make one iota of a difference.
A heart attack is obviously a massive assault on your system and it's also a wake-up call. Stopping smoking is a huge achievement and will clearly benefit your heart and general physical wellbeing. Weight gain appears to be inevitable but you can do all you can to keep it under control with a good diet. I know that exercise outside the house is impossible so this doesn't make it easy for you.
You'll be getting more cardiac monitoring than those of us who haven't had a heart attack so hopefully you'll gain confidence as the months go on that your heart has recovered and that nothing bad is going to happen imminently?
It's easy for me to spout advice- I haven't had a heart attack but I have been in intensive care for a week following the birth of my daughter when it was touch and go and I was fortunate to be in a major London hospital. Psychologically it's devastating and you may need professional help to move on from the trauma and onto a healthier future?
---------- Post added at 12:02 ---------- Previous post was at 11:58 ----------
Sorry Nic, I posted at the same time as you. You have far more expertise than I do on this-I just wanted to suggest help with the psychological side of heart attack trauma and recovery. I can't imagine the stress this must cause to both of you
nomorepanic
30-10-15, 13:03
Pulisa - I totally agree with you that they need to do more with the psychological side of things. I just wanted to share what happened with me to compare with Ronny I guess.
It is very common to get depressed after such an incident and me, Ronny and FMP were all very lucky to have survived the incident and it must have some sort of impact on your life. I know it has made me more grateful for what I have sometimes.
Ronny's Heart Attack is still very fresh in his mind. Mine is like a distant memory now that I try not to think about so it will be hard for Ronny to move on and see himself where I am now at the moment.
MyNameIsTerry
31-10-15, 05:55
I can see what you mean but I don't agree. My heart stopped beating for 19 seconds the evening after I had the stents put in that was a severe shock and also I have found out since that people are just not aware of the many different forms a heart attack can take, which I won't go into now.
Yes people with health anxiety often think they are going to die but in practically all cases they recover as it is anxiety.
There is a distinct difference when one is talking about the most important organ in your body and as you say I have suffered a HA and have GAD so that's a double whammy.
CBT does nothing for me and someone on here suggested my problems are so deep rooted CBT would just pass me by, and it has done. I had my last session yesterday (last of 4) and as soon as the therapist has gone I have forgotten every thing he has said.it just doesn't sink in and I regard myself as being reasonably intelligent.The subconscious just stops me grasping any therapy whatsoever.Sad but true.
I think if you are raising threads on the HA board about your real health issues, there is a possibility some may find it hard but this comes up from time to time and Admin just tell people to warn people in the thread titles so they can avoid them. Otherwise, perhaps use GAD or even Misc as I doubt they will be bothered about the odd thread in the wrong place anyway (there's loads on the HA board anyway that are for other places) if it helps you to talk about it.
I still believe that you are not triggering in the way you are thinking. FMP posts all the time on cancer threads and people are happy he does, so why would people not be happy to have your help? You aren't going on there are talking in detail about the scary side of heart attacks and all the treatment but talking people into believing they are not suffering from things like this. It's only like me posting on the threads where people are worried they have asthma. I've had that for nearly 30 years now and people post being afraid of it, but the vast majority of people manage it with basic meds and many very active people deal with it without it holding them back. Everytime I post stuff about ERP, it could be triggering for the person because I'm talking about steps that tackle fears. I've been through stages where merely mentioning things would trigger me but it is often needed to move forward. I saw FMP saying exactly this on that palpitations thread where you raised this question. I agree with both FMP & Phill because I believe some people will always be triggered by anything, including talking about recovery steps, but I also agreed that it is justified in being there as FMP was saying.
I reckon you are being a bit hard on yourself. It's a caring attitude to ask a question like you have but ultimately, these places can't exist (all the charities and therapists too) if talking about these things is triggering. Yes, some people will find the very presence of some people triggering, it's just how it can be. Some of my anxiety surrounds use of the internet and these places so I've had to resolve that and I know I'm not the only one on here but that doesn't mean I believe other people are triggering because they post things that I have associated with my fears because I know they have the same right to post and get help and that fear is in me.
I've read plenty of your posts on various boards including HA and Symptoms and I can't say I have seen anything other than you trying to help people. Wouldn't everyone on here agree?
Absolutely, Terry. But I think you need some appropriate and relevant help for yourself now, Ricardo, as opposed to trying to advise other people who may or may not be receptive depending on their triggers. Surviving a heart attack leaves you with a legacy of fear which must be very difficult to manage when other factors such as your GAD and agoraphobia come into the picture.
Although I have not had heart problems I have had been diagnosed with RA and this disease has proved to have a very limiting effect on my life, and I also believe getting older totally changes your outlook on things.
Basically I am in a lot of pain most of the time and simple things such as opening doors etc varies from being difficult to being nearby impossible. Added to the physical pain is the exhaustion. Life is now a series of choices. If I go to work I cant o anything else. Do I cook a meal or have a shower, do I go and get petrol or try and manage to shop for bread etc etc.
The medications I am on are auto immune suppressors so even a common cold is now something that has the power to hospitalise me (my biggest fear)
I am on my own and have always been very independent and find it nigh on impossible to ask for help, even if I did have people around.
My depression which has always been present is now at the stage of "I just don't care anymore"
Like you I have given up being cured of the depression. Not least because the psychiatrist has already told me that there is nothing she can do. There is no talk of even joining a waiting list for therapy. Plus I think to make things better and to get on top of my mood would require a total personality transplant, which as you get older is less and less likely to happen.
In answer to your original question, "How does one cope?" You at least are putting up a fight and I applaud you for that. As has already been said medical professionals seem to compartmentalise what is happening to us, when a more holistic approach is really required.
Mental and physical health are very intertwined and should be dealt with as such.
You are still fighting and that is great, tbh I have just given up now and am waiting to catch the cold, stomach bug or flu that will carry me off.
A lot of the posters on the HA board appear to be afraid of having that potentially fatal illness that could kill them, I on the other hand are more afraid that it won't happen to me and I will be forced to carry on this totally pointless existance for yet another year.
Keep fighting Ricardo you have people you love and who love you and despite any differences we have had in the past I sincerely hope that things will move forward for you.
Apologies if I have upset anyone but this post has highlighted something I have been thinking off for quite some time, and tbh I don't have anyone I can tell how I am really feeling.
Elen
ps this is your thread Ricardo so if you would like my post deleted just let me know
Forgot to say as well I am not sure how people who don't suffer from mental health probles appreciate who daunting and exhausting the never ending appointments and phone calls can be.
I am not agoraphobic but I seriously struggle to get to all of my appointments and end up stressed out due to my lack of ability to organise myself, and as for having to phone anyone - forget it, that is never going to happen.
This seems to be something that medical professionals are unaware off, or perhaps that is more due to my inability to articulate just how difficult I find it.
Elen, I just wanted to say that I think your post was very brave and honest and certainly illustrates just how hard you struggle each day and every day. There is no shame in admitting that you have given up hope of any improvement-being realistic can lessen the frustration and takes away the pressure of finding that all elusive "cure".
I don't know how you cope with being a mod though? This place can be so depressing and frustrating. It is to your credit that you still help other people despite your physical and mental pain.
I'm also not looking for therapy or a cure. I am who I am and whatever help I could have had I should have had 40 years ago.
I think this thread is a much needed one. Physical illness and anxiety disorders combined are a complex combination.
Well pulisa beat me to it.Elen, though sad it is very brave of you to actually put it down on here.One never really knows a person by just reading their posts or even messaging.
I don't mind the slightest that you posted on this thread.
I think those of us who have had real health issues and are older do find it extremely difficult to function on a day to day basis, and then when you throw into the mix a degree of anxiety or depression or both it's a lonely life even if one has a partner.
Some people avoid the Health Anxiety section on here and I often thought it might be a good idea for those of us who really suffer 24/7 to have our own section, a sort of talking therapy section as well as giving input to the rest of the threads on here.
I know one or two people on here quite well and they really sufer as well but don't put it down on here.They and us aren't lokking for reassurance but just an outlet to express ourselves, which sometimes helps yet other times when things are desperate the last thing any of us would do, would post, as we feel so awful.
I really am glad that I have had a good response to this thread as IMO it needed airing.
FMP I get slightly confused when you said after consultation with your GP you were given Zoloft which is an SSRI and I was told categorically that I wasn't allowed any SSRI'S after my HA though having taken them before they did nothing for me except give me horrendous side effects.
Nic,you said As you will probably know I had a heart attack as well 7 years ago but at the time I had a Crohn's flareup and that was more life-threatening than the heart attack so care for my heart took a back seat to be honest whilst they concentrated on the crohn's .I am amazed at that as I would have thought that the heart took priority as the longer one waits the more damage can be done to the heart.
FMP I get slightly confused when you said after consultation with your GP you were given Zoloft which is an SSRI and I was told categorically that I wasn't allowed any SSRI'S after my HA though having taken them before they did nothing for me except give me horrendous side effects.
After my heart attack and bypass, I was in depression. I knew it. I spoke with my GP and he prescribed Zoloft 100mg and offered a referral to therapy. I was on Zoloft for 6 months. I didn't really notice a difference but those around me did. For example: When someone wold ask me how I was doing prior to the meds, I would answer "Ehhh.. Ok I guess" After about 2 months I was answering "Pretty good". It wasn't a change I profoundly noticed and from what I've read about other's experience, it's similar. The only side effect I had were some bowel issues (loose stools). I was also given Ativan when needed to help me sleep during that time. Other than some brain zap things weaning off the Zoloft, it was overall beneficial. I wouldn't want to take it again but would if I were in a similar situation.
Currently, I have a prescription for Buspar which has helped with the "scanxiety". I haven't had to use it in over six months. What's good is that I can start taking it when needed and stop when I want. All I've noticed with it is that it takes the edge off... kind of like a benzo without the addiction aspects.
Positive thoughts
nomorepanic
31-10-15, 21:49
Nic,you said As you will probably know I had a heart attack as well 7 years ago but at the time I had a Crohn's flareup and that was more life-threatening than the heart attack so care for my heart took a back seat to be honest whilst they concentrated on the crohn's .I am amazed at that as I would have thought that the heart took priority as the longer one waits the more damage can be done to the heart.
Well I had the stent put in at Papworth at about 9am on the Sunday morning and by 9pm at night they transferred me back to Bedford cos I was in agony with the Crohn's flareup and Papworth basically said "we deal with hearts not bowels".
I then spent till the Thursday in intensive care but after that I was put on a general ward and nothing more was said about the heart attack.
The day I was discharged 2 months later one of the cardiac nurses came to talk to me about what I could and couldn't do once home. This seemed pointless though cos they had let me go home on a Saturday afternoon and go back Sunday afternoon and no-one had told me not to be overdoing it or whatever !
I couldn't do the rehab classes until the crohn's had calmed down as I had a drain in my abdomen for 7 months and they didn't want me picking up an infection or anything.
Well I had the stent put in at Papworth at about 9am on the Sunday morning and by 9pm at night they transferred me back to Bedford cos I was in agony with the Crohn's flareup and Papworth basically said "we deal with hearts not bowels".
I then spent till the Thursday in intensive care but after that I was put on a general ward and nothing more was said about the heart attack.
The day I was discharged 2 months later one of the cardiac nurses came to talk to me about what I could and couldn't do once home. This seemed pointless though cos they had let me go home on a Saturday afternoon and go back Sunday afternoon and no-one had told me not to be overdoing it or whatever !
I couldn't do the rehab classes until the crohn's had calmed down as I had a drain in my abdomen for 7 months and they didn't want me picking up an infection or anything.
Oh I see.Thanks for the explanation Nic.
MyNameIsTerry
01-11-15, 05:48
FMP I get slightly confused when you said after consultation with your GP you were given Zoloft which is an SSRI and I was told categorically that I wasn't allowed any SSRI'S after my HA though having taken them before they did nothing for me except give me horrendous side effects.
Is it because of the severity of your condition or difference in what it did? (I know nothing about heart conditions in general).
I ask because a quick Google pulled up a professor on the British Heart Association's website stating that antidepressants are used and he is talking about SSRI's. Tricyclics gets a mention too because they can't be used in the recovery period which makes me think they may be an option afterwards or why bothering mentioning the recovery period? They have another professor on a different page saying antidepressants are an option but nothing specific.
My cardiologist is the head of the department at St.Georges Hospital and he told me it is not recommended to use any SSRI'S especially for the twelve months after a heart attack especially as they do not mix with the countless pills that one has to take.That is good enough for me as opposed to googling. No two heart attacks are the same and the severity is also different.I got away with it where my cardiologists words, so it's not a case of severity.
It's not as such a written rule but can lead to erratic heart rhythms and my own gp said it wasn't a definite no but why take the chance especially if they don't agree with me in any case.
Being on blood thinners can also have an effect on many aspects of ones body as a small cut may need an A & E nurse to stem the blood and clot the affected area.
I should also add that I have a condition called Bigiminy, not caused by the HA but born with it, an irregular but regular heartbeat but is intermittent and doesn't show up always on an ECG.However the main point is that SSRI'S just don't suit me regardless of the HA if they did it would be my choice,but why make myself more anxious.I know several people who cannot take SSRI'S
Not to scare anyone but the media was full of news this week that it is thought many SSRI'S can actually lead to heart disease. ,Maybe one day they will produce a pill that works instantly without any side effects .:)
MyNameIsTerry
01-11-15, 09:26
Ricardo,
Yes, usually things like Warfarin tend to be a no go with these meds (or perhaps they need monitoing more?) since SSRI's cause clotting issues. Maybe it was that?
It's not about Googling. That was on a major charities website by two professors in that field hence it seemed relevant. I was curious as to why two experts seem to find it ok and you had been told no, and whether it could be useful in finding out more. If there is no intention to look further, it doesn't matter but you seemed to be trying to understand why.
What I meant by severity was issues of lasting damage and whether some people are left worse off than others i.e. you can't compare 2 people without their cases being assessed to see if they are compatible, hence maybe that is why FMP could and you couldn't, if you see what I mean.
If they don't help anyway, it's not even a discussion.
All people who have heart attacks are put on blood thinners for usually a year and aspirin for life.Warfarin has been overtaken by newer drugs like the one I am on called Ticagrelor which is not so difficult to deal with.
Let's hope with all your problems terry you don't suffer a heart attack. It is absolutely life changing moreso than anything i have ever undergone, and I have been through a lot.
MyNameIsTerry
01-11-15, 10:08
I don't doubt it, Ricardo. One of the guys I worked with had a triple bypass and my GF's dad had a bypass a couple of years ago. Luckily my GF's dad has retired but the guy from work was more like late 40's like FMP and he was off for ages getting over that. They tried to manage him out over it but luckily he got back in. I think he was pretty lucky as he managed to get back into a stressful environment and he smoked & drinked and he seemed to keep going ok (really bad habits you would think people learn about having major surgery!).
My dad is mid seventies and he is the youngest of 13 so you can imagine how old some are. He's lost several in their 80-90's to things like this, cancer, strokes, etc. They had health problems so were in bad positions when things like this happened. Some battled on after strokes but they needed a lot of help and it pretty much kept them housebound. It's something I worry about a fair bit with my parents thesedays.
I hope they come up with a better support plan for you than those woeful 4 sessions of CBT. I had a taste of agoraphobia due to starting meds twice and with GAD you don't even have a safe place at home either so it just makes it even worse. I spent months getting over a brief stint of a couple of months of agoraphobia so it's beyond a joke that professionals think 4 sessions is going to be enough, it really is. I know I could never have done that with 4 sessions so it's obviously going to be a longer period or a lot of more work given your length of time.
I think that's a significant point you raised about not having a safe haven with GAD, Terry. It's with you everywhere. I had a brief brush with agoraphobia but often feel like a caged lion at home so I'm thankful I can walk out of my front door and take my GAD with me.
I'm sure SSRIs will be replaced pretty soon by other more effective and hopefully less addictive meds. I'm glad I'm rid of them.
MyNameIsTerry
01-11-15, 11:50
Yes, I'm like you, I find it can be worth sitting about. This is the essence of GAD to me, just being anxious no absolutely no reason, no triggers, just your anxiety default setting higher than it should be. I've seen it described as a thermostat that becomes raised permantely from birth default setting and it makes sense with GAD. I had to go walking daily to burn off the adrenaline although this has been worse this time around because of this med as you know.
It's funny you should mention is being with you everywhere. One of Jon Kabat-Zinn's books is called "everywhere you go, there you are", in other words it's all inside you as you say so work on yourself.
There seems to be a lot of drugs out there that we don't know about. SSRI's & SNRI's are commonplace but what about those that work with Melatonin? (that one you posted about recently, for instance). There are meds that work with multiple neurotransmitters like Dopamine and some emerging that work with Glutamate. Are these around but maybe too expensive for the NHS hence we don't hear about them? They are even making them out of CBD oil as one UK company has a licence granted and some anxiety sufferers reckon that helps them so who knows where the future will go...BUT the sooner SSRI's are pushed on the back burner, the better.
Hi
When I am having a 'blip'. Whether for half an hour, or a couple of days,
I do wish I could take some form of medication that would ease my symptoms and;
Wouldn't have side effects.
Or
Be addictive
...if only...
What I have learned from reading OP posts on NMP is that in the long run, many people find ADs either do not work or reduce in efficacy after a period of time and have to 'try' another. also most have very bad starting up side effects At a time when they are so desperate mentally and physically.
The thought that there may be meds out there that could help, but are being prohibited by the NHS due to finance frustrates me beyond belief!!
I'm not sure that much is available in the private sector either. I'm not convinced that medication is the way forward anyway for anxiety disorders and certainly not for long-standing anxiety disorders.
Getting some sort of control over the physical symptoms is a huge achievement though and we all have our different ways of managing this!
MyNameIsTerry
02-11-15, 06:09
Hi
The thought that there may be meds out there that could help, but are being prohibited by the NHS due to finance frustrates me beyond belief!!
It's an annoying issue made even worse by the NHS's lack of truly being "national" as local trusts & CCG's make the decisions. For instance, Buckinghamshire Trust have "blacklisted" Pregabalin but not only for anxiety (which is is licenced to treat in the UK, in GAD)but also for epilepsy. Basically, they kicked the epileptics onto the much cheaper Gabapentin and refuse the anxiety sufferers. If you search for the CCG's who do allow Pregabalin you will find over 200 of them currently prescribing it. Now, I don't know about you but I'm pretty sure we have laws in this country that are supposed to protect us from things like this!
NICE have Pregabalin listed as a 3rd tier drug treatment. The British National Formulary (BNF) says to use it and the local Bucks formulary says blacklisted but has an interesting little section in their "About Us" stating the BNF should be followed over their decisions. Yet we still see threads & posts by people in Bucks being refused by their GP's. One clearly annoyed member of the public even went to the trouble of putting in a Freedom of Information Request (FOIR) which proved some of their hospitals were prescribing it for anxiety!
So, for Bucks it's just about cost as this med is expensive and they banned it across the board. You can even find advice in NHS articles about switching to the cheaper Gabapentin purely to save cash. Then look at me, I'm on Duloxetine which is about £30 a month to them when Citalopram & Sertraline are far far cheaper...and my GP doesn't seem to care as I haven't even been back to see him for 2 years because he isn't much use. Thats not very efficient or transparent to me.
Maybe I am naive but the NHS covers the whole of the UK, so how can certain counties ban or withdraw certain drugs and replace them with what appears to be cheaper drugs, and do they have the same benefits even though they are cheaper.
It looks like us mental health patients are the poor relations in this country and reading the papers the deficit is getting bigger and the underfunding is even greater.
Even the new complex anxiety and depression dept who are looking after me, have only been in existence for 7 months and have had to move because the overheads were too high and now they are based at The Wilson Hospital which must be at least 150 years old and all mental health issues are treated there.
On reflection, I suppose each county has a different budget, but even so it shouldn't be like this.
Is the gabapentin/pregabalin link the same as the escitalopram/citalopram one? I think it's a lottery as it depends on where you live as to how "generous" the borough is with funding..
Am hoping that Surrey Borders is feeling flush today as it's the Panel meeting for my daughter's proposed referral to the CADAT centre at Kings/The Maudsley. I wonder whether I could crawl in with her and get a BOGOF deal? I've saved the NHS a hell of a lot of dosh over the years.......
Please can I ask you all to keep your fingers crossed for her? We really need this to happen
bernie1977
02-11-15, 11:30
Is the gabapentin/pregabalin link the same as the escitalopram/citalopram one? I think it's a lottery as it depends on where you live as to how "generous" the borough is with funding..
Am hoping that Surrey Borders is feeling flush today as it's the Panel meeting for my daughter's proposed referral to the CADAT centre at Kings/The Maudsley. I wonder whether I could crawl in with her and get a BOGOF deal? I've saved the NHS a hell of a lot of dosh over the years.......
Please can I ask you all to keep your fingers crossed for her? We really need this to happen
Got everything crossed for you. Please let us know how you get on :hugs:
Thank you, Bernie. I won't hear until the end of the week as news takes a long time to filter through to the relevant people on the NHS....xx
MyNameIsTerry
02-11-15, 12:52
It goes without saying, of course we will be keeping everything crossed for her. :hugs:
Hopefully this will be the last of the red tape so people can get on with helping her. Perhaps if the NHS stopped operating free "drunk taxis" to A&E they would have more money to help... When I was young (God, I've got to this stage :doh:) you walked home and slept it off!
Thank you, Bernie. I won't hear until the end of the week as news takes a long time to filter through to the relevant people on the NHS....xx:hugs::hugs::hugs:
Thank you Terry and Ricardo! I'm not going to be too hopeful but you never know....
MyNameIsTerry
03-11-15, 06:00
Maybe I am naive but the NHS covers the whole of the UK, so how can certain counties ban or withdraw certain drugs and replace them with what appears to be cheaper drugs, and do they have the same benefits even though they are cheaper.
It looks like us mental health patients are the poor relations in this country and reading the papers the deficit is getting bigger and the underfunding is even greater.
Even the new complex anxiety and depression dept who are looking after me, have only been in existence for 7 months and have had to move because the overheads were too high and now they are based at The Wilson Hospital which must be at least 150 years old and all mental health issues are treated there.
On reflection, I suppose each county has a different budget, but even so it shouldn't be like this.
You are right, Ricardo. Thats how it should be.
Sadly, the NHS seems to be an overarching umbrella of a network of trusts and CCG's who are given a certain level of autonomy. Whilst the NHS may cover the UK, Scotland have their own NHS anyway. The Scottish version of NICE is simple awful compared to NICE who cover England & Wales. The Scottish version don't even have any published guidance on anxiety disorders so hopefully they take some from NICE but they don't have IAPT up there and use the old services we did before e.g. the Community Mental Health Teams.
It's not even just mental health either. There have been a fair few stories about patients with serious physical health problems who have been denied meds on the basis of cost. There was a child in my city not long ago who was refused a very specific physio programme to get his quality of life back after they treated his condition so they family set up a campaign for donations and he went private.
It's not a pleasant reality of a public health system but I gurss unless we are willing to stump up more cash in taxes, it will always be this way...it's not just about current austerity as much of this was going on when I was young under more than one party in power. I used to have a friend 20 years older than me who had a disability and he worked with the local Healthwatch to take on the local NHS trust over their many failings. The trust were always being outed in the local newspaper over something. I lost touch with him years ago and now he is the leader of that group so it would have been interesting to hear his views on the current issues of these trusst & CCG's and how complicated and fractured it seems to be.
I read that 61000 gp appointments are either cancelled or people don't turn up, and that's on a daily basis.
I know that often it is said that we who pay taxes partly fund the NHS but I would implement a small fee for each appointment one makes excluding kids under 18 and OAP'S. That would have a twofold effect in that many people would think twice about making an appointment when perhaps a knowledgeable pharmisist could help and it would free up time for people with multiple problems to see their gp .
I appreciate there is no perfect solution but watching a BBC programme last week about people who have been sectioned and absolutely no beds available in the whole of Lodon (unless they go to the private sector and pay a fortune) it becomes a lottery when they repeated said the least ill person in any particular mental health institution should be relleased so that a bed could be found.
This happens on a daily basis and takes one back to the Victoria era.It really is a sorry state of affairs.
MyNameIsTerry
03-11-15, 07:07
I'm not in agreement with the GP's wishes to bring in a charge for all appointments for them to make further profit on top of ther funding but I do believe there should be charges for missed appointments unless there is a very good reason for it.
I think the same with "A&E taxis" since the fire brigade fine you for wasting their time so the NHS should do the same for the drunks.
I'm not sure what the situation is for sectioning here but I can remember seeing something about them saying you may go out of the area. There are some charities too that offer inhouse services like this for people. I think questions about those facilities should be raised to as one in my county has quite an appalling record for security and the police finding some of those poor people wandering by busy roads or on bridges.
I read that 61000 gp appointments are either cancelled or people don't turn up, and that's on a daily basis.
I know that often it is said that we who pay taxes partly fund the NHS but I would implement a small fee for each appointment one makes excluding kids under 18 and OAP'S. That would have a twofold effect in that many people would think twice about making an appointment when perhaps a knowledgeable pharmisist could help and it would free up time for people with multiple problems to see their gp .
I appreciate there is no perfect solution but watching a BBC programme last week about people who have been sectioned and absolutely no beds available in the whole of Lodon (unless they go to the private sector and pay a fortune) it becomes a lottery when they repeated said the least ill person in any particular mental health institution should be relleased so that a bed could be found.
This happens on a daily basis and takes one back to the Victoria era.It really is a sorry state of affairs.
I agree that people are inclined to rush to their GP when there really is no need. I seem to be finding GP's are far to eager to offer up consulations with specialists at the drop of a hat. I have been referred to numerous specialists "just to be sure". I would rather that money were spent dealing with the issues that really affect me.
I can also confirm that secure beds in mental health wards are a joke.
A friend was actively suicidal and trying to get her a bed was a nightmare. When she got one there appeared to be no attempt to actually help her get better, it was a case of containing her.
She left the ward one morning for a few hours home visit, when she got back to the ward her bed had been given to a more acute patient.
Taking away a safe haven for someone who is already feeling worthless and scared is just so cruel.
I really do not know what the answer is, it seems that the NHS throws money away with one hand and withholds it with the other. Very frustrating for all concerned.
I don't think anyone knows how to effectively treat acute mental illness. It's a case of ignoring the urgency or else over-medicating and containing.
I'm not sure that there will ever be any clear-cut ways to treat these illnesses despite all the medical breakthroughs and neuroscientific studies. The brain remains essentially an enigma.
MyNameIsTerry
04-11-15, 05:26
Thats truly awful, Elen. It's like "dead mans boots"! I was talking to a guy in my local Tesco and he was telling me his dad was very ill in hospital and they transferred him out. Where did they send this pensioner? The mental health hospital. Luckily he was so drugged up & out of it that he didn't see the patients around him assaulting the staff on a daily basis. The old man in the bed next to him was terrified being in there. His family had to complain to get him transferred back to the main hospital. This was worrying, that they could look at how many beds they have as opposed to the right place for a person to be and also ludicrous since someone may need that bed if they were sectioned!
The funny thing is like you say, GP's are throwing money away left right & centre on pointless tests. I know in my area surgeries have been told to reduce the number of blood tests as the GP's have openly stated it in conversation to people. They were being monitored and those going over the expected amount faced some form of sanctions. I believe this is right and I'm always surprised when I read the posts on the HA board to see GP's testing "just in case" when the person has unlikely fears. Thats like the lawyers have taken over from the medics to me. They also seem to be accessing specialists a lot and I question why. Some people you just know what the outcome is going to be and it makes you wonder why a GP can't.
They moan about us costing them money yet they chuck money down the drain on business consultants. We had one top consultant at my local hospital who had been on suspension pending investigation for over 12 months! They had to pay him and hire people to cover his role. In the end it took the loical newspaper to name & shame the guy (and their grossly inadequate investigation) and within a couple of weeks he had resigned with full benefits! :doh: He's been ruled against & suspended before by the GMC and now they face over 100 patients in a group legal case pursuing him & the hospital for damages.
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