Posted by Babak on July 25, 2015, at 13:59:09
Hi
I posted this on an ADD forum but apparently any advice from them could lead to legal claims!!!
So, I hope someone can help here assured that I would 1st confirm its viability through a doctor.
I was diagnosed almost three years ago after over 35 years of misdiagnosis. Going back to the beginning; I developed periodic depression around the age of 14, which kept recurring until 29 when I had a complete breakdown and was put SSRi that was only partially beneficial. I was on a mix of Venlafaxine and Mirtazapine in 2001 when I was referred to hospital for ECT. But following a reaction to the anesthetic, not helped by being forced to take 300mg of Effexor after coming around I developed severe tachycardia. As I was left unattended in hospital (the nurse who was supposed to call the doctor failed to do so), I developed heart murmur which quickly deteriorated and I was forced to have my aortic valve replaced (was never compensated for the damage, because the hospital claimed that they had lost my records!).
Then I was prescribed Olanzapine to which I showed a paradoxical reaction. The paradoxical reaction deepened my depression as well lots of other side effects and it became permanent and I was forced to give up on my complaint. But contrary to the manufacturers' recommendations I was not kept under proper monitoring while on Olanzapine and the paradoxical reaction was not detected for five years although my condition got so bad that I couldn't leave home to buy food and once I was found starving in my bedroom by social services who finally came around when I stopped answering the phone or collecting my post.
To alleviate some of the painful side effects that included severe stomach pains, I was prescribed stronger and stronger painkillers up to morphine sulphate which unsurprisingly not only stopped the pain also lifted my mood. So after few months I kept increasing my dose until my doctor refused to repeat my prescription. So, I started using heroin but even heroin couldn't deal with all the side effects and I started to develop a whole new set of neurological symptoms. It got to the point that I developed RLS at nights and on waking up I felt paralyzed for the 1st 15 minutes or so.
Meanwhile I watched an episode of Horizon where I learned that hyperactivity was not an essential symptom of ADHD and how it manifested itself in Adults. Except Hyperactivity, I recognized just about all the other symptoms so clearly that might have well been my own personal history: four failed career changes, many, many more failed relationships that include three marriages and two failed children, having tried to live in three different countries. I also remembered how often I used to (and still do) lose, things like gloves, pencils, expensive lighters, jackets, pullovers, etc.. and have been mocked for it all my life as well as having a lousy handwriting, losing focus on details, losing interest in all hobbies and sports that my mother try to get me to pick up. The only thing is that I was a good student as long as I didn't have to study, specially when it came to sciences where I could use analysis rather than memory. But unable to study efficiently became more and more difficult and by the time I got to University my disadvantages lead to much lower grade than expected.
So I went to substance misuse services where and as well as being put on Methadone, I was referred for psychiatric evaluation. I mentioned that I might have been a case of undiagnosed ADHD but by then I was categorized as a substance abuse patient and the possibility of prescribing a stimulant was totally out of the question, i.e.; my proposal was considered as a mundane case of just another junkie trick to get high even though I didn't drink alcohol and my opiate dependency was not even a year old.
Once I was stable on Methadone, I was capable to do my own research and this how I came across Olanzapine's potential for causing paradoxical reactions. The only thing was that Olanzapine made me sleep and for some one in my situation, sleep was the only respite. So I was hesitant to come off it but I had no choice. To my amazement, I started feeling better after only 5 days. I was so incredulous that after two weeks, I started taking it again and symptoms returned within 48 hours. So, it couldn't have been anything else but Olanzapine.
However unfortunately by then my depression had become permenant, my teeth damaged and I was physically addicted to opiates as well psychologically. Over the next two year, I kept trying to come off Methadone, but my depression became intolerable as soon as my dose went below 12mg. So my social worker suggested to go on Subutex. My social worker was the only person who really helped me and argued that I was not a typical substance abuse patient as drug seeking behaviour was never observed during all the time that I was monitored.
By then I had done several on line ADHD tests and I even contacted a specialist in US who assessed me over Skype. He said that although he couldn't give me a definitive diagnosis he strongly recommended that I be assessed by a specialist. So, I made a formal complaint against the psychiatric department to the local NHS trust who finally agreed to arrange an appointment with an ADHD specialist, probably because just then there was at last a clinic for adult ADHD in Brighton hospital (one day per week).
I was diagnosed with ADHD with possible comorbidity of Asperger syndrome (I have repeatedly scored as borderline with Asperger Syndrome, something that the CPT therapist in the same hospital has ruled out.
Anyway having not responded well to Stratta, I was finally and reluctantly prescribed Concerta and hence I had the first six completely depression free months of my life since I had turned fourteen and a sense of permanent calm that I had never felt before. As time went on I felt as if everything was clearer and I didn't have to strain myself to observe things. I felt as if until then I had been swimming in a muddy water against the current but now I was in clear waters and there was no current to swim against. I continued to improve as my dose was increased to 56 mg. I felt a totally different person and everyone noticed it, even on the other side of the telephone, people told me that I sounded "much more with it". I did have a faster than usual heart rate and my blood pressure was 180s/80s but I was in such CONTINUOUSLY good mood (not euphoric) that I didn't want to change anything. My short term memory was much better. I no longer forgot where I parked the car and I stopped zoning out when I read important but boring documents. I also started feeling easily satisfied rather than continuously feeling as if something was missing in everything I did. Everything looked in focus and easily perceptible, if that makes sense.
However I reluctantly accepted that I needed to do something about my blood pressure. That is when things started going wrong again. The problem was that high doses of Ramipril although brought down my blood pressure it made my heart beat even faster and I also started loosing power in my muscles and my blood test showed abnormally low testosterone level. I must have tried a dozen different blood pressure medication (including clonidine) and they all had intolerable side effects and caused my heart to beat even faster, except beta blockers which unfortunately counteracted the beneficial effects of Concerta as well and I felt continously sleepy. But things got even worse when I tried to come off Subutex. My own theory is that because Subutex lowers breathing, it probably also lowers the heart rate.
While attending CBT group (useless) I spoke to another ADHD sufferer who told me that she had the same problem with concerta but it was resolved when she changed to lisdexamfetamine (vyvanase). I knew that it didn't make sense but in desperation I begged to try it against my psychiatrist's advice. But for once the psychiatrist was right. It was a nightmare. My heart rate wet to 110 per minute and I couldn't handle it at all. So, I returned medication just incase they thought I might have made up the story to get hold of some meta-amphetamine to get high. So, I am stuck now, I have reduced my Subutex to 1.5mg but I have also had to reduce my Concerta to 18mg which has meant the return of the symptoms. What I have noticed is that on 36mg, I am OK until around noon and then my heart beat gets intolerable until 7:00pm when it starts to calm down again. I have measured it and it is normally around 96-98bps at rest but it does creep beyond 100bps at times. Please bear in mind that this is at rest on a day with minimum physical activity.
So, please, if there is anyone out there who can suggest something viable I would be forever thankful.
poster:Babak
thread:1080764
URL: http://www.dr-bob.org/babble/20150629/msgs/1080764.html