Please can anyone advise

[Sarajones]

Hi

I am new here but I hope someone will read this and reply.


I am in my 40s and have been on ssris since I was a teenager. I don't know how much of my symptoms are the original thing, how much have been caused by meds or how much is withdrawal.


Each time I've come off meds I've gone back on within a few months. This time I came off in May. My life is now awful. I am constantly anxious, depressed, terrified, feel like I'm going mad or going to die soon. I have obsessive thoughts all the time and my health anxiety is through the roof.


When I am on ssris I can just about cope. I can function and live a bit of a normal life. When I'm like this I just can hardly face another day.


But my problem is this - I have read so much lately about the dangers of ssris that I'm now terrified of going back on them. I've read that they can cause brain damage, they can thin the blood and cause clotting problems, they can cause heart defects, strokes, Parkinson's and Alzheimer's. All things (especially the last one) that I am terrified of. I can't seem to find any categoric proof of anything either way - just lots of articles and 'studies'. I'm also really worried about the fact that they are still a relatively new drug - we aren't yet 40 or 50 or 60 years in so I guess we don't really know the real long term effects. But I've read that in rats they've proved that ssris kill brain neurons.


I've tried all sorts of supplements. None do anything. I've tried reading self help books, cbt, homeopathy, acupuncture, counselling, meditation, breathing exercises, everything. Nothing works and I just feel like I can't face another day without the meds but how can I take them when they might be doing permanent damage to my brain?


I'm so sorry for the essay but I wondered if maybe anyone else has also struggled with this issue or whether anyone knows more facts than me about the potential longterm effects of these drugs, specifically Sertraline as that is the one the usually works best for me.


If anyone could reply I would be very grateful. Thank you for reading.

[MyNameIsTerry]

SSRI/SNRI's are known to cause clotting issues BUT thats just an increased risk issue so it is for people who are already at risk e.g. Warfarin users. If you look into this a bit further it will tell you that taking Omega 3 along with SSRI/SNRI's can increase the clotting problem BUT when are we being told not to eat fish? Never.

There are many meds that carry clotting warnings. The level of risk and who is at risk is what matters as meds carry warnings across the board for legal reasons.

You have to be careful with articles and ensure you look to reputable sources and probe deeper. For instance, Diazepam can cause problems with breathing BUT if you look deeper into this it clearly points out that it is a risk ONLY for people with severe breathing disorder/diseases.

Consider this example from a reputable medical source (BMJ) and how there are still loads of holes in it.

The researchers relied on a database maintained by the Quebec health insurance program. From it, they identified nearly 2,000 men and women over age 66 who had been diagnosed with Alzheimer’s disease. They randomly selected more than 7,000 others without Alzheimer’s who were matched for age and sex to those with the disease. Once the groups were set, the researchers looked at the drug prescriptions during the five to six years preceding the Alzheimer’s diagnosis.

AND

“Benzodiazepines are risky to use in older people because they can cause confusion and slow down mental processes, ” says Dr. Anne Fabiny, chief of geriatrics at Harvard-affiliated Cambridge Health Alliance. “However, although there is an association, we still can’t say that benzodiazepines actually cause Alzheimer’s,” she cautions.

AND

The researchers acknowledge that the use of benzodiazepines could be just a signal that people are trying to cope with anxiety and sleep disruption—two common symptoms of early Alzheimer’s disease. If that’s true, their use of a benzodiazepine may not be a factor in causing dementia but an indication it is already in progress.

So, they have only looked at a very limited period of time prior to onset. If Benzo's actually did cause it, wouldn't we be seeing more early onset being linked to them? They only studies people over 66 so it would seem the concern is more for people who are older than you.

[Phill2]

I'm on Brilinta (blood thinner) aspirin and Sertraline.
The only trouble I have is it takes ages to stop bleeding if I cut myself shaving.

[dally]

[QUOTE=MyNameIsTerry;

You have to be careful with articles and ensure you look to reputable sources and probe deeper.

Consider this example from a reputable medical sourcec(BMJ) [/QUOTE]

HI

I Seem that react to all meds and have such major side effects that for me, it is just not worth taking them. Throughout my time on NMP I have been totally shocked at the response from members who have had SE trouble starting ADS, no effect, increased doses prescribed and eventually have been switched to another AD.!! I have also read many posts where the drugs appear to stop working after helping for a time.and so the cycle continues

I was always led to believe ADs were harmless and non addictive, but through research into alternatives to benzodiazpine therapy, I have discovered that SOME people have long term SEs from taking them and difficulty withdrawing from them. I have found, however that withdrawal from benzo can can done successfully albeit it might take 2 years plus.!
I don't believe there are enough studies done by reputable scientific bodies to prove this theory, because it always comes down to money or rather lack of it.


During my research, and from reading posts on this and many other forums, i am astounded at the ineptitude and ignorance of some of the medical profession when prescribing meds.
I believe, anyone prescribed any medication should have at least a 6 -12 monthly med review by their gp.

Also, I have noted, there seems to be many variables in the bodies processing of medication.
Age, general health, other drug interactions, etc.. So it is very difficult to judge the long term success of a drug on each individual person

My advice to you is to talk to your gp about your concerns that the ADs are no longer working for you and your worry about withdrawal side effects. arm yourself with has much facts on the subject because he may just suggest transfer you onto another AD. Be sure in your own mind if coming off meds is what YOU want to do, and request help to do this.

You may need to 'try' CBT and other therapies again to help you through this period.

[Phill2]

HI

I Seem that react to all meds and have such major side effects that for me, it is just not worth taking them. Throughout my time on NMP I have been totally shocked at the response from members who have had SE trouble starting ADS, no effect, increased doses prescribed and eventually have been switched to another AD.!! I have also read many posts where the drugs appear to stop working after helping for a time.and so the cycle continues

I was always led to believe ADs were harmless and non addictive, but through research into alternatives to benzodiazpine therapy, I have discovered that SOME people have long term SEs from taking them and difficulty withdrawing from them. I have found, however that withdrawal from benzo can can done successfully albeit it might take 2 years plus.!
I don't believe there are enough studies done by reputable scientific bodies to prove this theory, because it always comes down to money or rather lack of it.


During my research, and from reading posts on this and many other forums, i am astounded at the ineptitude and ignorance of some of the medical profession when prescribing meds.
I believe, anyone prescribed any medication should have at least a 6 -12 monthly med review by their gp.

Also, I have noted, there seems to be many variables in the bodies processing of medication.
Age, general health, other drug interactions, etc.. So it is very difficult to judge the long term success of a drug on each individual person

My advice to you is to talk to your gp about your concerns that the ADs are no longer working for you and your worry about withdrawal side effects. arm yourself with has much facts on the subject because he may just suggest transfer you onto another AD. Be sure in your own mind if coming off meds is what YOU want to do, and request help to do this.

You may need to 'try' CBT and other therapies again to help you through this period.

Sometimes it just comes down to the individual's attitude to the drugs and not the drug itself.
If you're afraid of them of course taking them will increase the fear.
Believe me I've been there and done that.

---------- Post added at 16:59 ---------- Previous post was at 16:57 ----------


SSRI/SNRI's are known to cause clotting issues BUT thats just an increased risk issue so it is for people who are already at risk e.g. Warfarin users. If you look into this a bit further it will tell you that taking Omega 3 along with SSRI/SNRI's can increase the clotting problem BUT when are we being told not to eat fish? Never.

There are many meds that carry clotting warnings. The level of risk and who is at risk is what matters as meds carry warnings across the board for legal reasons.

You have to be careful with articles and ensure you look to reputable sources and probe deeper. For instance, Diazepam can cause problems with breathing BUT if you look deeper into this it clearly points out that it is a risk ONLY for people with severe breathing disorder/diseases.

Consider this example from a reputable medical source (BMJ) and how there are still loads of holes in it.

The researchers relied on a database maintained by the Quebec health insurance program. From it, they identified nearly 2,000 men and women over age 66 who had been diagnosed with Alzheimer’s disease. They randomly selected more than 7,000 others without Alzheimer’s who were matched for age and sex to those with the disease. Once the groups were set, the researchers looked at the drug prescriptions during the five to six years preceding the Alzheimer’s diagnosis.

AND

“Benzodiazepines are risky to use in older people because they can cause confusion and slow down mental processes, ” says Dr. Anne Fabiny, chief of geriatrics at Harvard-affiliated Cambridge Health Alliance. “However, although there is an association, we still can’t say that benzodiazepines actually cause Alzheimer’s,” she cautions.

AND

The researchers acknowledge that the use of benzodiazepines could be just a signal that people are trying to cope with anxiety and sleep disruption—two common symptoms of early Alzheimer’s disease. If that’s true, their use of a benzodiazepine may not be a factor in causing dementia but an indication it is already in progress.

So, they have only looked at a very limited period of time prior to onset. If Benzo's actually did cause it, wouldn't we be seeing more early onset being linked to them? They only studies people over 66 so it would seem the concern is more for people who are older than you.

I've been taking 2 x 5mg Benzo for 12 yrs now.
Nothing wrong with me. :wacko:

[MyNameIsTerry]

I've been taking 2 x 5mg Benzo for 12 yrs now.
Nothing wrong with me. :wacko:

Keep playing those games, Phill, it will keep your brain healthy :yesyes:

Nah, that study failed to conclude anything other than some people do develop it but they have no clue whether the Benzo's came before or after so to me, thats a pretty poor BMJ article. :doh:

[Sarajones]

Thank you for the replies.

The clotting issue - yes I see what you mean that it's possibly only a real concern if mixed with another thing at the same time such as taking blood thinners.


What concerns me more is the fact that studies have shown that ssris kill neurons and can cause permanent brain damage. I just don't know how accurate these studies are. Maybe no one knows, as the drugs have only been around since the 90s. But the tests I've read about in rats sound pretty scary. Do I want to live in a permanent state of anxiety and depression or do I want to potentially kill off my brain cells? I feel like that's the choice I need to make :'(


Also I keep wondering if I will improve in time without ssris. It's only been 5 months I've been off them. Maybe if I gave it a year or two I would see an improvement. But I don't think I can carry on feeling so bad. Even just at home I'm in an almost constant panic attack. I just can't see a way forward. Are there people here who have been on ssris longterm and are still ok?

[countrygirl]

My husband has been on fluoxetine for past 15 years and I just wish he had been put on them 20 years before that! He went from often suicidal with one attempt and flashes of unbelievable anger to someone who is calm and happy 99% of the time.

In the first 6 years he tried many times to come off the drug but within 2 weeks he would be suicidal again. He tried St John Wort before the initial prescription of fluoxetine and it did not help at all.

So his Dr said he needed to take them for life.

[mark84]

Well even if they do cause some issues I personally think if you need them they're healthier than living with stress, which is something that shortens lives.

[Fishmanpa]

Well even if they do cause some issues I personally think if you need them they're healthier than living with stress, which is something that shortens lives.

Exactly.

Positive thoughts

[MyNameIsTerry]

Well even if they do cause some issues I personally think if you need them they're healthier than living with stress, which is something that shortens lives.

Some minor issues I think we would be happy with but things like dementia which the OP mentions would put a lot of people off. I guess it also depends on the side effects involved e.g. Mirt & weight gain, Olanzapine & metabolic changes leading to diabetes, etc. For some the effects seem to outweigh the benefits e.g. the fatigue, so it's down to the switching game.

It's something I tend not to think about to be honest. I know my med, Duloxetine, there has been some worries about heavier drinkers and liver toxicity. I don't think it was ever legally proved but they changed the PIL to warn people which is a bit strange.

The minute they find something serious like dementia risk, it will be time to pull some licences since we are talking about meds that for many cases are used to treat mild-moderate people with little or no suicide risk. Quality of life won't come into it when compared to the possibility of a mental illness...and anxiety is a cureable condition or manageable.

Hopefully in the future they will just get it right so we don't have to have months of hell starting the damn things!

[Sarajones]

Yes, that's right. I'm not talking about usual side effects - I'm talking about longterm detrimental or life threatening effects.

Of course I'd rather have sweats or dry mouth or no sex drive or any of those types of things than debilitating anxiety and depression. I made that trade years ago. But what's scared me now is the things I've read about killing brain neurons and causing frontal lobe damage, etc. Those aren't the same as the usual side effects most of us ssri-ers know about.

And I also wouldn't be worried if I thought I could go on them for a few months or even a couple of years, and then stop. My doctors have always told me that I need to be on them for life - but what might that cause after 30, 40, 50 years? Having been on them on and off already for over 20 years this is now a very real worry for me, and is preventing me from going back on them.

[Phill2]

I think this needs to go into the woulda , coulda , shoulda basket.
There's millions of us around the world taking these things and enjoying a better life because of it.
You are the only one who can decide if you want to take them.

[MyNameIsTerry]

But what's scared me now is the things I've read about killing brain neurons and causing frontal lobe damage, etc. Those aren't the same as the usual side effects most of us ssri-ers know about.



Have you also spent time reading about neurogenesis? Are you aware that our own chronic stress response down-regulates serotonin by the increased cortisol and this has been shown to decrease neurogenesis thus preventing the "birth" of new brain cells in certain regions such as the hippocampus?

There is even studies linking SSRI's to neuroplasticity and how neuroplasticity is influenced by them to increase neurogenesis (fluoxetine, I think).

So, there is a lot of accepted science too and this points to how some of these meds increase our levels of serotonin to cause a down-regulation of norepinephrine and the resulting cortisol to boost neurogenesis.

So, how does that compare to what you have read?

Have you read credible studies that are accepted? If you ever read any "meta-analysis", where they take groups of other studies to compare & look for proof and to discount some studies in the group, you will see how perfectly acceptable studies get debunked. Science is always emerging too and changing what we know.

There is a very good example of your worry on the NICE website about antidepressants and pregnancy. GP's tend to hold the old view that they are bad and you can't be pregnant on them but thats not what the specialists say and NICE have published the specialist reviews done in the UK to understand this. Their advice shows that many of the studies have failed to prove anything as comparable studies have yielded opposite results. This is often the point of later meta-analysis.

So, be careful because in order to say "yes, X med does this" you also need to ensure you have checked to see there is no comparable accepted studies stating "no, X med does not do this" and you need to be sure that any newer study has covered all the bases to disprove the previous one(s).

[Sarajones]

I haven't read that stuff, no, but thank you - I will.

"Have you read credible studies that are accepted?" - This is exactly my point. I don't know if they are credible or not. You just have to Google and loads of 'studies' and 'reports' come up but I don't know if they are real or credible or not. This is the problem.

I have found a lot of people just on forums though that mention memory problems after longterm use, and my memory is absolutely dreadful so in terms of memory there certainly seems to be some truth in it. The other stuff though - I'm just not sure.

[jayb1]

Been on venlafaxine in different doses for probably 18 years . never had any side effects and have accepted I'll be on them for the rest of my life. Having to take diazepam alongside them at the moment due to extreme anxiety and agoraphobia. I would rather take the tablets and be able to get through the day. I stopped reading the side effects they put inside medications years ago .

[MyNameIsTerry]

Memory is affected by some neurotransmitters themselves including serotonin. How many people know that? How many have spent time reading about neurotransmitters? How many people have been able to separate the difference between their mental health problems causing this and their meds? How many understand the role of the limbic system in memory? How many understand the different types of memory and how these mental health conditions and meds could interact with them?

So, are you seeing people talking in great detail to show they have done some research or are they just posting about their problems and their threads are littered worth assumptions?

Neurotransmitters are about balance. Too many excitory ones and you are bouncing off the walls. Too many inhibitory ones and you will be struggling to think straight.

How many of these people have adjusted their diets to make sure they get enough of the precursors of these?

There are many possibilities and the chances these people on forums have many gaps in their knowledge are very high.

It can be hard to navigate this stuff but you will certainly find horror stories about meds. Some of them even come from people trying to sell the natural route for profit and so they are only interested in bashing meds. These guys can often be seen moaning using the phrase "big pharma" when ranting from my own experience trying to read around.

Studies need to be from medical sources. If they are appearing in Nature, the BMJ, etc then they should be credible and will be having peer review. Articles on NHS websites and NICE will be credible but may conservative in my opinion of some.

Beware "guru" sites though. I could point to one very well known one that had been in & out of national media over the years. This person will tell you there had never been any studies of CBT that show it can work. There are tons accepted by the NHS & NICE. But then this person also creates fake studies to sell products.

[Lifelonganxiety!]

I think that if you're on something for 40 or 50 years you've reached the stage of your life where things start going wrong anyway. Hopefully those 50 years will be a lot more pleasant than daily, crippling anxiety or depression.