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Elvanse for ADH or Venlafaxine for depression?

12 replies

takemebacktothe1990s · 14/12/2022 22:39

I've been taking Venlafaxine for around 10 years and at varying doses. Currently on 225mg which I take at night and have been on this dose around 4 months.

I was diagnosed with ADHD through a private clinic in the spring and I was started on the stimulant medication Xaggatin. This was titrated up to 54mg and although I found great benefit from it in terms of focus and concentration, I was still procrastinating like crazy. I was then changed to Elvanse 30mg around a month ago. This dose is awful and it'll definitely need increased at my next appointment next month.

Anyway I had a GP telephone appointment last week and he was horrified to hear I was on Elvanse alongside the Venlafaxine, due to the risk of serotonin syndrome, and basically told me I had to choose which drug to stay on as it couldn't be both.

He searched through the system and told me he had had no communication from the private clinic regarding my adhd medication. He did know about diagnosis as he responded with an abrupt No to a request for shared-care. I emailed the private clinic to let them know about my GPS advice and I got an email back saying basically "yeh serotonin syndrome is a thing and you should be closely monitored. And we've attached a leaflet on symptoms to look out for". WTF?! Nobody ever mentioned this to me at the time even though I gave them a full medical and medication history. They know my GP has declined shared care and they see me every 2 months. I wouldn't call that close monitoring.

I would say I've probably had some mild SS symptoms when my meds have been increased. Vomiting, hand tremors, palpitations, anxiety. I didn't know what I was meant to be looking out for.

I pursued a private adhd diagnosis as it was becoming clear my symptoms were at an extent that I would not be kept on after the probation period in my then-new job. Once the Xaggatin kicked in my performance improved massively.

I really really don't want to give up the adhd medication as it has shown me what most people experience daily. I can focus, concentrate, my memory is better and I don't have as much anger inside. I still have some titrating to do but I feel more "together".

The thing that's worrying me about coming off Venlafaxine is the withdrawal symptoms Sad I have tried coming off it at various times over the years and have experienced everything from brain zaps, muscle pain, intense headaches, severe suicidal thoughts, sleeping deeply all day, dizziness, nausea, joint pain, severe irritability and paranoia leading to relationship issues. This is to name just some. It is clear that my symptoms of depression arise at times of stress in my life as opposed to a chemical imbalance (if that makes sense? Situational depression).

I'm scared Sad nobody in my real-life understands what I'm about to go through coming off the Venlafaxine. I also have a new partner since my last time trying to wean off (years ago) and I'm not looking forward to him seeing me after being unable to shower for days, and not really giving a shit about it either. (He is so supportive about everything in my life... I just don't think he knows what's coming!)

Also, I only get 10 days company sick pay then it's SSP (which doesn't even cover my monthly mortgage payment. I live alone). I'm feeling under a lot of pressure to continue working. If you have been through Venlafaxine withdrawals you'll know this is probably impossible Sad

I don't know what I'm expecting from this thread tbh. I just wanted to put my thoughts and fears in to words, and hear from others who can offer support with what's ahead. Sorry for the long rambly thread...unmanaged adhd Blush

OP posts:
takemebacktothe1990s · 14/12/2022 22:39

Sorry for typo in title...ADHD!! And any typos in the OP Blush

OP posts:
VioletLemon · 14/12/2022 22:48

It sounds like you've got loads of insight to your condition and that's helpful for you. If you're not happy with the care received go elsewhere or better, to your GP. I know it takes forever but it will be worth it. I haven't been on these drugs but a different combo and various combos. Titrating off and then on, made me feel a bit disoriented at times and did take a while to fully settle but I was prepared for it so stuck to it. You know it will be worth it but keep pushing for help, do you not have to pay for your prescription if private. If money no object I'd go for it. Otherwise go through NHS, it can be v expensive.

Chatbot12 · 14/12/2022 22:53

I’m not sure what it would take for me to willingly try and wean myself off venlafaxine but you’d have to promise me at least £100 million, early retirement and a medically induced coma while my body deals with the withdrawal effects. So I appreciate your predicament and I’m sorry to hear it. Are there any alternative ADHD meds you could try?

takemebacktothe1990s · 14/12/2022 22:58

Thanks for replying violetlemon

I wonder if I'd need to be reassessed again if I changed to another private clinic? Unfortunately money very much is an object as I've been going through a very pricey divorce. I pay £120 every 2 months for a medication review and then my medication is on average £70 a month. I'm a single person with a mortgage, therefore this is a lot Sad but worth it in terms of the benefits I've felt in some of my adhd symptoms. I really can't afford to go through the assessment privately at this point in time.

I was asked to send over all my adhd assessment documentation to the MH team with the nhs, and they're hoping to diagnose me with that alone. They did warn me though that the nhs tends to use different assessment tools. If they can't diagnose me using the paperwork alone then I'll go to the back of the queue, and it's around 2 years in my local area.

I really really can't stress enough how awful these withdrawal symptoms are Sad at one point I was unable to get out of bed without physical help for well over a week, and continued to deteriorate over the course of the next week until my stbxh took me to the GP I my pyjamas and my bare feet stuffed into wellies.

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takemebacktothe1990s · 14/12/2022 23:11

Chatbot it seems like you definitely understand!

Apparently there are 2 forms of stimulant medication for adhd (amphetamine-based) and the others are non-stimulants. Because I'm affected mainly in terms of attention etc, it's really helped give me a massive kick up the arse. I almost maxed out one stimulant before being changed to my current one.

To give some perspective as to how adhd affects me without medication;

  • I'll lose my train of thought in conversations ALL the time. Embarrassing when I'm a work situation.

  • Repeat myself constantly.

  • Cannot remember written information. If I'm flicking between tabs for work then I keep flicking back and forth as I forget. Even if it's just someone's initials.

  • I wfh, and if I leave my desk to go to the toilet then I will see a few crumbs on the floor so HAVE to hoover. Then of course I need to dust too. Just because. Then I decide it's a good time to clean the whole bathroom after I've used it. And so on and so on. Before I know it I've lost 30 minutes of my working day which needs made up after 5pm. But happens multiple times a day.

  • Cannot follow written instructions. Because of this I don't know how to work my boiler which was installed 2 years ago. I have a degree btw... I have some intelligence!

  • Get lost wherever I go, no sense of direction.

  • Get bored while having conversations. Have lost friends because my eyes have drifted to the tv behind their shoulder while they've been talking.

  • Forever forgetting plans, times etc. Attempted to take my DD to school on a bank holiday.

  • A feeling of deep rooted anger just bubbling away inside at all times. Feelings of being useless compared to other mums, colleagues, friends etc.

The above is just a snapshot of how life was before adhd medication. There's lots more where that came from. I can't go back to it Sad**

I feel like both options are shit. Give me a medically induced coma while on full sick pay, while I stay on the stimulants!!!

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takemebacktothe1990s · 14/12/2022 23:16

Feel like a "half-shut knife" without the stimulants, if you're familiar with the phrase Grin last one to get the joke sometimes, spend a lot of time thinking about what to say next in conversations (therefore I don't have many friends as I'm not exactly fun Sad). I just feel like I'm firing on one cylinder. I don't want to go back to that life.

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blisstwins · 14/12/2022 23:34

I have been on venlafaxine for years and feel similar. I want to die if I even miss a dose. I used to be in 225 and am down to 75 where I will stay. I titrated down over a long period of time and recommend you do the same, no matter what you do with adhd meds. Seems insane there isn’t another adhd med that works with venlafaxine. I am so sorry you have to go through this. My only real contribution is to recommend you decrease venlafaxine even if you stay in it.

takemebacktothe1990s · 15/12/2022 06:32

Hi blisstwins thanks for your reply.

Yes it's the worst feeling even just missing a single dose. I take mine at bedtime as it can make me feel nauseous, but this is dangerous if I doze off in the evening. Even waking up a few hours after dose-time and I can already feel the dizziness setting in Sad

Apparently both forms of drug increase the serotonin levels and the risk is that it can be raised so much that it causes all sorts of symptoms, and the only way to resolve is to take away the extra serotonin.

I have no idea how long my GP is planning on weaning me off over although I'll get more information next week. Highest dose I've been on is 300mg... I was put straight on to that dose after a particularly awful time with my MH. Crazy to think I was just whacked straight on at that dose! Over years I managed to wean myself down to 75mg but over time it's been increased again alongside various life events such as close bereavement.

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StillDancingEvenOnTheRainyDays · 02/01/2023 16:17

@takemebacktothe1990s
how are things currently?

I’m day 4 of this medication so it’s all very early days for me. 75 mg moving up to 150 in a week or two

takemebacktothe1990s · 03/01/2023 11:24

*StillDancing
*
No change to my medication since I last posted although I have a med review for the Elvanse tomorrow. I spoke with my GP before Christmas and he said he's leaving any Venlafaxine dose changes to the psychiatrist, but I have no idea when I'll hear from them as I don't know their name yet!

Elvanse 30mg is rubbish! It definitely needs increased but I'm wary as any increase brings the risk of serotonin syndrome. Feeling a bit in limbo!

How are you feeling on the Venlafaxine? That's quite a jump planned for you in a short space of time.

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Entwifery · 03/01/2023 22:50

I have ADHD and take Elvanse and have taken just about every antidepressant available over a 20 year period, and I can confidently say that stimulants changed my life for the better. Turns out my depression was mostly caused by how much I struggled with untreated ADHD symptoms, and once my dose was perfected it was like the clouds parted.

takemebacktothe1990s · 04/01/2023 19:25

Entwifery

This is very promising about your adhd responding to Elvanse! I know myself that my "anxiety and depression" are actually symptoms of adhd or as a result of how fecked my life has ended up living with the condition undiagnosed! My issue is trying to taper down and withdraw from the Venlafaxine Sad

So, I thought my adhd medication review was tomorrow...nope, it's a week tomorrow. This is just more evidence that 30mg is doing nothing for me at all!

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