OCD Action

Cuthbert ffoliott
Moderator

Hi everyone -

since I am not only someone with OCD but also active in neurobiology, I would like to hear how you have (or have not) responded to treatment with selective serotonin reuptake inhibitors (SSRIs). You will know the names: fluoxetine, paroxetine, sertraline, et cetera.

In my case, severe life-impairing checking has been successfully reduced to a symptom level that can be managed. But my hoarding still is highly problematic. I would go so far as to assume that checking and hoarding have different biological underpinnings (the folks who rewrite the DSM handbook ever are thinking about taking hoarding out of the spectrum of OCD disorders, in fact).

If you want to, you are invited to comment briefly about the side effects too. But that might be too personal an issue.

Thanks in advance!

Cuthbert.

Thu Dec 3 2009 10:00:45 #
Unregistered

Hi Cuthbert
I started taking Seroxat in 1992 and it has been the only form of treatment which has helped me. For long periods I have been able to manage my OCD on 10mgs daily, under times of stress I have increased it to 20mg daily and extreme stress 30mgs daily but at this level I get digestive problems (extreme heartburn which then cause sleep problems and the vicious circle starts up, OCD gets worse). I also suspect it gives me constipation even at low levels. My GP trusts me to take valium on an as needed basis. I believe a low dose of valium is a useful tool in keeping oneself stable and despite all the medical hype I have had no problems whatsoever with addiction, the only problem is having to wait for ages to get my single strip of 2mg tabs because it is a "controlled" drug.
In the late 60's/early 70's I think I must have been an unknowing guinea pig for all the anti-depressants and tranquilisers on the market at that time. I cannot remember all the names but these ring a bell - Lorazepam, Largactil, Melleril, Motival, Sinequan, Stelazine, Triptafen, Valium, Anafranil, Lentizol, Marplan, Nardil, Tofranil. They were all ineffective with the OCD but helped the depression and sleep deprivation. The MOAI drugs were supposed to be a wonderful new invention, certain foods had to be avoided under threat of imminent death but neither did I die nor improve the OCD. I don't think anyone could have tried harder than I did to combat my OCD by therapy, thought, willpower or accepting whatever treatment was offered but to no avail.
In the '80's I was prescribed Clomipramine in hospital but developed an all over body red itching skin rash and had to come off it. I was sent home on no meds and within a day had sunk into suicidal depression and ended up back in hospital following a suicide attempt and Police helicopter search for me.
I have also had group psychotherapy, individual psychotherapy, marriage counselling (excellent for marriage but no use for OCD), all without effect on the OCD.
With Seroxat I have been able to combat all checking problems as you have, but my contamination issues remain, although more manageable than they have been in the past.
I have other experience which suggests to me that discontinuation of SSRI treatment can have severe and even fatal consequences. If you want me to explain this in more detail please contact me privately. Joyce

Thu Dec 3 2009 10:59:13 #
Unregistered

Dear Cuthbert
PS I have re-read your message. I have never had hoarding problems but the OCD is from my father's side of the family. He clearly had OCD but it was not recognised. He had three sisters, I didn't know one of them very well but the other two had hoarding problems. They are all dead now but the youngest sister's hoarding was so bad it was impossible to get into the rooms of her home when she died. She also clearly had OCD, she was obsessed about caring for the local feral cats and in her 90's would cycle to feed them and when she could no longer cycle she would pay for a daily taxi to take her and wait whilst she fed them and then take her home. Finally when bedridden in a nursing home she used to watch something on TV and then be afraid ahe was responsible for what she had seen, something violent on the news perhaps and think the Police were coming for her. This tells me she had OCD and hoarding and suggests that they are linked. I think much more research needs to be done before any reclassification is done.

Thu Dec 3 2009 11:09:49 #
Cuthbert ffoliott
Moderator

Hiya Joyce -

thank you for your diligent and most informative replies! I will re-read them a couple of times, here are my first comments:

Constipation is indeed a side effect of SSRIs, not for all people though. I myself had irritable bowel syndrome (IBD) prior to my medication. That stopped immediately when I began to take it, and I thank God for that. My intestines made an awful lot of noise, due to the relocation of air. I really had trouble with attending lectures, or going to a cinema, such was the sound. Now I know that IBD can occur in severe stress, as does diarrhoea. There is more to the story, though. There are indications that bacteria can pass the gut lining, and cause an immune reaction outside it; the immune reaction in turn may 'infect the brain' (so-called interleukins pass the blood-brain-barrier) and actually damage certain brain areas that are dysfunctional in OCD. The situation is also called: 'leaky gut syndrome'.

This may sound exotic at first. But it absolutely explains things as I experienced them, in the exact time frame (before and after medication, I mean).

I am very glad that you can handle the use of benzodiazepines. I was given oxazepam (is like valium) for 12 years. It was the treatment of choice for OCD at the time, which I find strange. For me benzodiazepines were highly addictive. I still recall vividly the withdrawal symptoms when I had run out of them (e.g. during weekends).

Your dads youngest sister clearly had OCD, in several ways. What you describe about the events on TV is called: 'thought-action-fusion', it means: the patient cannot really discern the separate entities of his/her thought, and what happens in outside reality. It is a form of magical thinking. I know of a young girl who actually thought that she was responsible for the attacks of 9/11, just by thinking beforehand of something similar. That must have been awful for the child.

That's it for the moment, Joyce. If I think of more I will respond here again.

Cheers, Cuthbert!

Thu Dec 3 2009 12:34:53 #
Unregistered

Hi Cuthbert
Thanks for the reply.
I forgot to mention the dreaded side effect of SSRIs and SSSIs - reduction in libido and erectlie problems. I did not go onto SSRIs until my late 40's and have difficulty distinguishing between effects of the medication v the menopause but I feel desperately sorry for younger people who get this side effect. OCD is living hell but if the medication wrecks yourlove life it is a hard choice to have to make. Joyce
I hope others will come forward and join in this subject despite the embarrassment because

Thu Dec 3 2009 17:53:20 #
nettlenoo
Member

hi i was on fluoxetine a few years back when i was suffering stress/ depression that stuff was awful i dont remember any side affects other than that of feeling really angry all the time, i even had a fight with my best friend at the time. i just blanked out and got really angry i dont remember much of what happened but we are still friends. needless to say i stopped taking them not good at all. i had five years after that with no medication at all the hand washing i could cope with but after i left my job and my gran died i started getting horrid pure o thoughts and voices i was very low and i felt like i had well and truelly cracked up i could not cope so i went to my new doc and was prescribed citalopram 20mg she told me its and anti d and anti anxiety type pill and i have to say i had palpitations to begin with but now i feel alot better dont get me wrong i have days when i cannot be bothered but im much better no more voices or thoughts. which is a god send i couldnt cope with that but i feel somewhat more me now. i dont want to be on anti d's really id rather be in a position to cope but as it wasnt workign for me citalopram has been a help. also my ibs has really toned down and if i take the meds late in day i normally have a tummy ache but if i take it in the morn im fine? strange. any further questions please ask good luck annette

Thu Dec 3 2009 19:01:08 #
Cuthbert ffoliott
Moderator

Thanks to netti, that is very informative. And joyce: a side effect of SSRIs is indeed lowered sexual feelings. I myself have quite normal erections, but the sensitivity of my penis has decreased. Also, ejaculation seems not as 'powerful' as it was. I sometimes wonder: if I stop medication, will the sexual feeling return completely? But what will be the trade-off? I can't see myself live in any fruitful way, should the checking compulsions return in their full gravity.

At any rate: please do keep on writing. Even if the info is sad, or embarrassing, it helps: it is a counterweight to what I perceive as 'the official line'. Clinicians often state: oh, but we can treat OCD very well!, or they expose one to a whole array of different types of medication, to the point where one is wary of the true intentions of said clinician. My point of view: the picture that eventually emerges from collating personal experience of patients will be much more truthful and thus helpful in making progress, than professional statements that sometimes sound a bit like commercials.

Cheers to all, Cuthbert.

Fri Dec 4 2009 9:47:42 #