Almost out of options for medicines

[isthisit]

Right now as a type this my hands are trembling and my neck feels like it is pulled too tight. I'm on Saphris and Vyvanse right now. Saphris is causing something along the lines of cervical dystonia- before the Cogentin it felt like my right side of my neck, shoulder, and mouth were pulled really tight.

I think today I'm going to talk to my pdoc about getting off the Saphris. It works very well, BUT the entire muscle tightness and tremors worry me. Cogentin is just a mask to the underlying issue.

Thing is, I've been on almost all atypicals and almost all anticonvulsants.

Seroquel was too sedating to the point where I was more than 90 minutes late for work on a few occasions.

Risperdal made me lactate. (kept wondering why my shirt kept on getting wet)

Abilify worked SOOO well until my eyesight became extremely blurred.

Geodon had me not sleeping for almost 4 days straight and gave me severe akathesia.

Seroquel XR was neutral, but I was still caught in a depressive state.

Saphris...well explained that above.

Zyprexa- good for knocking me out in a bad swing but the threat of weight gain scares me to death. (I'm not anorexic but I do have issues worry about keeping my weight under 130

Invega - haven't tried since Risperdal made me lactate.

Lithium made my neck glands swell somewhat painfully.

Depakote makes my ears ring something awful.

Trileptal...gave me headaches and I OD'd on it back in February.

Lamictal, it worked so well at first and then pooped out on me.

I'm thinking about revisiting the Seroquel XR and add Lithium onto it. I think I also may go back to Adderall XR in case Vyvanse is adding onto the tremors. I'm trying to convince myself being on meds that half-way work is better than not being medicated.

I'm just afraid of having these tremors and the neck issue. Well more than afraid- terrified. I don't want them to be permanent or get worse.

[jarn]

I think you should look at trying combos, and it seems like of the meds you've tried, Seroquel has fairly livable side effects - either the XR, with something extra for mood stabilization, or the regular, with something to help with the sedation. (I take Modafinal (Provigil) for sedation)

You're not going to find a perfect med with no side effects. I think it's about managing the side effects.

[isthisit]

You're not going to find a perfect med with no side effects. I think it's about managing the side effects.

Yeah, that's the point I'm at now. The lesser of the evils. I think I'm going to request the Seroquel XR (not nearly as sedating as Seroquel IR) + Lamictal + Adderall XR. AAP to help with the paranoia, intrusive thoughts, and the weird "things in my head going too fast and slow and too big and small at the same time" thing. Lamictal for the depression. Adderall XR for the ADD. (I was reading on the ADD forums on how several people experienced muscle tension from Vyvanse). Adderall XR may not last as long, but it never gave me any adverse side effects.

I'm nervous about talking to my pdoc today though. I always am. Pdocs always intimidate me, BUT I need to find my big girl voice and speak up.

[isthisit]

So I'm back on Seroquel XR again. (50mg for two days and then 150mg after that) Pdoc also wants to introduce an antidepressant once I'm used to the Seroquel XR. I requested to switch back from Ambien CR to Lunesta due to the morning amnesia.

Pdoc said something which made me uncomfortable- pretty much said I could just have BPD instead of BPII since meds aren't working. Thing is, Abilify, Saphris, and Lamictal worked. The former two just have bad physical side effects and the latter just stopped working. Made me paranoid that she's ready to give up on trying to medicate me.

[SashaSue]

Honestly, I think you should have stayed on the Saphris that was working so well for you, and let the cogentin cover up the underlying issues.

I think your doctor is probably onto something, unfortunately. Not necessarily that you only have BPD, but, given that you do have it, and it can be difficult to tease out which symptoms are BPAD, and which are BPD. Unfortunately, as I'm sure you know, meds are not going to help BPD symptoms. So, no matter how well you're able to medicate the bipolar stuff, you're still going to have to deal with the BPD at some point. Have you looked around for a DBT therapist or group in your area?

[isthisit]

Unfortunately, as I'm sure you know, meds are not going to help BPD symptoms. So, no matter how well you're able to medicate the bipolar stuff, you're still going to have to deal with the BPD at some point. Have you looked around for a DBT therapist or group in your area?

Yeah, I tried to explain how I've noticed two types of mood swings. Those which are triggered by mostly small events and become full of explosive anger/ crying/ whatever over-reaction I may experience AND those which aren't triggered and last for weeks at a time. The former being BPD swings and the latter being BPII swings. Meds help with the BPII- that's how I realized something else is going on having my BPII under control with Saphris.

Having to be on Cogentin long-term scared me- especially since the tremors and neck tightness have not gone away 100%. I do have a therapist which does DBT, but I think I'd benefit more from group therapy since the attention isn't on you 100%. I saw my pdoc today and she gave me a list of group DBT sessions.

[SashaSue]

It does sound like you've got a pretty good grip on the differences between BPAD and BPD symptoms, which is really important, and really hard to do. I'm wondering why your target dose of seroquel is so low? Mood stabilization dosages are usually more in the 400-600mg range.

If after trying other meds, and other combinations, it really does turn out that the Saphris works significantly better for you than anything else, maybe talk to a neurologist about the issues you've had, and see what he/she has to say about long term risks, management methods, etc. At least, I'm thinking that's who I'd want to talk to if faced with that kind of decision.

I think once you start a DBT group, it'll be great for you to have a tdoc who's well versed in it too. You'll be able to get clarification, and another good perspective, on DBT concepts as you're learning them, and you'll be able to discuss issues in DBT terms. Continuity of care is an excellent thing.

In general, it really sounds like you're doing a good job of being proactive with your treatment, and advocating for yourself, both of which can be hard, and are important.

[sorrel]

I would think there's a good chance that the lymph node swelling was coincidental, since that's from infection and I can't think of any explanation as to why lithium would cause it.

Also, Cogentin isn't "covering up" anything, really, it is negating it. I would think having a counter-med that works for a primary med that works would be a good option, one of the better possibilities.

[isthisit]

It does sound like you've got a pretty good grip on the differences between BPAD and BPD symptoms, which is really important, and really hard to do. I'm wondering why your target dose of seroquel is so low? Mood stabilization dosages are usually more in the 400-600mg range.

Well, the first time I tried it I was only on 50mg since Seroquel IR knocked me out and sedated me hardcore. This time she said we're aiming for 150mg and go from there.

Being an advocate for yourself is surprisingly hard, for me at least, when talking to a pdoc and trying to include your input with treatment. I have to fight not to shut down during appointments and just select what I feel comfortable saying and hide the rest.

But I'm trying!

I would think there's a good chance that the lymph node swelling was coincidental, since that's from infection and I can't think of any explanation as to why lithium would cause it.

Also, Cogentin isn't "covering up" anything, really, it is negating it. I would think having a counter-med that works for a primary med that works would be a good option, one of the better possibilities.

For me I'm not comfortable with muscle weirdness with medication- I worry about it being permanent a lot. Then my mind starts making up these "could be" scenarios of how bad it could get. Plus I worry about taking a med to control side effects from another me- that's just me though. That constant worry would just exasperate my Borderline issues even more- stress and worry are my enemies.

The 223rd is when everything exploded- having really bad dystonic reactions and the stress of calling doctors to try to find someone to help me set me off. I had one of my freakouts and ending up cutting and obsessing with the thought of it being permanent.

Not saying what I think is THE way, I see your on a med which helps with lithium tremors- I've only been on Cogentin less than a week and it's bothering me so bad.

[jarn]

Well, the first time I tried it I was only on 50mg since Seroquel IR knocked me out and sedated me hardcore. This time she said we're aiming for 150mg and go from there.

I've heard a lot of people say that Seroquel is more sedating at lower doses.

In my experience, when I was first started on Seroquel (this is a few years back, and the IR) - the lower doses that I was on as I titered up KNOCKED me out in just a few minutes. I ended up on 800mg of the IR and I could be up for a few hours after taking it before falling asleep (annoyingly though, I had to lie down or I got super dizzy). It didn't make me fall asleep quicker, but I did have huge sedation the next morning on the higher doses.

So you might find some of the knockout effect subsides at a higher dose.

[rowen]

There's always the typicals and Clozaril.

[isis]

Seroquel may be less sedating for you at higher doses, as jarn said. Around 25mg it antagonises histamine receptors and acts as an antihistamine, just like anti-allergy drugs can make you very sleepy, so can seroquel. then above 50mg it starts to block serotonin receptors, and above 200mg it blocks dopamine. Its hard to work out exactly which neurotransmitters are siginificant in each person's condition - but some experimentation with increasing the dosage of a drug like seroquel can have a big impact on how well it works for you.

I agree that it sounds quite possible that the swollen lymph nodes were coincidental and its worth giving lithium another go. You also don't seem to have tried carbamazepine (tegretol) which is similar to trileptal but sometimes the slight difference can have a different result.