Med Suggestions?

[ButransGirl]

Hi. My flashbacks and anger from PTSD are out of control. I need to suggest a med for my psychiatrist. I'm currently taking Viibryd for depression, Saphris for sleep, anxiety and mood stabilization, and i get 15 Xanax per month to take as needed. I take Neurontin for pain and it makes my mood worse.

I'm getting OCD symptoms that i didn't have prior. I'm so angry many times a day. I can't calm down often. I'm irritable, and i rant when i get triggered and have trouble switching gears. My flashbacks- i can physically feel my body in the situations, i can feel not being able to move, my heart races, i feel nauseous, lightheaded and my face burns, i feel suffocated, horrified and helpless, and i feel intense pain. It's happening too many times a day to be controlled with Xanax prn. I don't want to take that around the clock.

I don't want to get any fatter as I've gained 45lbs since August! I just want to not feel... So restricted and powerless on high alert. I'm constantly triggered bc my body is full of painful injuries that remind me i was neglected.

I do use mindfulness and g grounding techniques. I name everything in the room. I distract. I listen to binary beats. I pace. I tap my hands switching from one to the other. I use positive affirmations, i tell myself I'm safe. But when I'm in it, i can't do this stuff. Instead i fantasize about revenge or a little part of me dies inside.

I heard clonidine and minipress were helpful for PTSD. Anyone with experience? Do they make you tired? Should i risk making my narcolepsy worse by adding BuSpar? Change my antidepressant?

Thank you for reading.

 

[joeylittle]

You mentioned narcolepsy right at the end of your post - can you share what other diagnosed medical conditions you have, and whether you are taking any medications for them? Also, are your current drugs the only psychoactive ones you've tried so far?

We aren't doctors, but lots of us have taken lots of different meds. I think a bit more info would help people share their experiences.

 

[ButransGirl]

You mentioned narcolepsy right at the end of your post - can you share what other diagnosed medical c...

Sure.
I have Autoimmune Thyroiditis, Narcolepsy with Cataplexy, PTSD, Bipolar, Anxiety, Polycystic Ovarian Syndrome, GERD, some cognitive difficulties due to brain injury, and chronic pain due to bulging discs in c-spine, cervical spondylosis, degenerative disc disease in both lumbar and cervical spine with radiculopathy in lumbar, fibromyalgia, and myotonia. I think that's all of it. Everything is currently being treated, although my thyroid med might need to be adjusted after we see the results, bc I've gained a lot of weight recently and my eating habits haven't changed.

 

[Lucycat]

I don't get this. I am the patient. I expect the doctor to make recommendations to me about medicines. Not the other way round. He is the expert. Why should I decide what is better when I know nothing?

 

[ButransGirl]

I don't get this. I am the patient. I expect the doctor to make recommendations to me about medicines. No...

A little research can go a long way and it's always better to be an informed patient than not. I want to know what people find works for them. It is ultimately the Dr's decision but a good Dr will use their knowledge and make an informed decision. I like health, I like to research it and I really like to hear people's opinions on what they've tried... everyone will react to meds differently, but a lot of the times ppl have common complaints, like Topamax being called Dopamax. And Dr's aren't always using their brains. I was only out of a coma for a few weeks when a psychiatrist mentioned ECT. I was like "Seriously? More brain damage sounds like a good idea to you? If someone shocks my brain even in the slightest, I could have to relearn how to walk and talk for the third time in my life. There's holes in my brain, and no, nobody will ever take that risk of giving me more! " I've suggested different treatments for different problems and sometimes the Dr gets really excited about the idea. A dr patient relationship is supposed to be an open one that allows input from both sides with the Dr making the ultimate decision as he obviously is more qualified. It's not like I'm going to go into the office and demand a medication. I just want to know which meds people have success with. I've heard of minipress/ Prazosin being good for ptsd and nightmares as it reduces the adrenaline response.

 

[EveHarrington]

I don't get this. I am the patient. I expect the doctor to make recommendations to me about medicines. No...

Hi Lucy,

The OP is just like me in that she is from the USA. Do you remember my med question post where I asked for med recommendations and you responded in the same way? Do you remember how I explained to you that patients in the USA are expected to be more proactive and involved with medication decisions? (Due to direct patient marketing that doesn't happen in many other countries.)

That thread was my very first thread. I felt very unwelcome here as a result of reading your response. After that I struggled with reaching out because I was afraid of being told to just go ask my doctor/therapist because they know me best. I am asking you to be considerate of new members (all members) when you respond like this. IMHO the point of a medication forum is to get feedback on a medication. I'm not sure why you are responding to posts in the medication forum when you seem to think that everyone should just ask their doctor about medication.The point of a medication forum is to get feedback from others who have tried medications so that in the end we can make an informed decision and not have to blindly trust a doctor. (Dangerous territory IMHO given that many doctors don't know the true dangers or prevalence of negative side effects for a medication, some of which may become permanent.)

Thank you and have a nice day!

 

[ButransGirl]

This was my second post, and yes, i too, felt quite unwelcome here with your response, Lucycat. It is my understanding that forums like this are there for support and sharing of information. Your response was neither. I would appreciate it if you didn't have anything nice to say to me, then don't say it at all. You didn't answer my question. All you did was belittle me in your question, which angered me. I came here for support, after all...
And furthermore, you stated that you know nothing, and while that may be true for you, it's not true for everyone, and certainly not for me.

 

[Chava]

I have a good connection with my doctor and have actually been able to just message her and ask if I could try baclofen when my other muscle relaxant stopped working. I had just heard it worked for a colleague. My doctor was fine with that. She knows my whole history and also that I'm pretty sensitive to meds too. Neurontin actually helps my mood (chronic pain too), but I have gained some weight on it. If it's making your moods worse, are there other options for the pain/nerve med that you have not tried?

I don't know anything about the meds you asked about in the end, sorry. But I relate to several of the symptoms (pain, feeling trapped or immobilized, heart palpitations, nausea). No med really fixed any of those symptoms for me, though maybe I just never found the perfect med. I kept working on the grounding stuff from all kinds of angles, and finding ways to deal with the surges of adrenaline (panic, benign heart palpitations, and sick feelings). My therapist works primarily through body/somatic focus for trauma, and that has been helpful for me. So, though I know that's not what you're asking about, I just wanted to add that it's great if you are working on grounding things and keep experimenting from that angle, because that is important no matter what med you find. Even if a med works for a while, it seems like they eventually stop working or something gets f*cked up.

That all being said, maybe consider what you have been on in the past...what has helped and what has not helped. I know for me, for example, that SSRI meds did nothing and I usually couldn't tolerate side effects. SNRI were helpful but I could not sleep. NRI or NNRI (whatever they'd be called)...probably okay, but intolerable side effects for me. Tricyclics...quite helpful mood-wise but I was also over-sensitive to side effects. In the end, I gave up on anti-depressents. But consider what classes of meds you have and have not tried. When I met my current doctor I was able to go over all of this with her. I was in a crisis but was certain no SSRI would help, so she helped me start the gnarly process of finding other options. Right now I'm just on pain meds, low doses, and managing the PTSD/CPTSD symptoms through the long process of therapy and acquiring new coping skills.

 

[ButransGirl]

Hi Chava, thanks for your response.

While I asked about the med aspect, I do appreciate hearing that grounding techniques have been helpful for you. If you could pick a few of your favorites, what are they? I don't know many, because while my career was in mental health, the programs I worked in were geared more towards bipolar d/o, depression, and personality disorders.

I do know some and they're helpful. I name everything I see around me. I rub something that feels nice. I take a sip of something sweet or suck on a piece of candy and try to focus only on the feeling. I tell myself where I am, that I not in danger anymore and that a signed durable power of attorney paperwork packet will be distributed to local hospitals soon so this type of situation can't happen again. I turn on a youtube video with binary beats sounds. And I also use my anxiety and mood coping strategies like distraction, calling a friend, writing, pacing around my apartment, breathing, doing some neck/back PT exercises, listening to very quiet music (sensory issues though!), and if it's too much to handle, then I take half a xanax tablet and then another half if that doesn't work. I don't like to take those, so I keep it to a minimum- 15 a month and only when I'm really struggling and can't function.

As far as my previous med trials- that gets tricky. I have some type of neuromuscular disorder, recurrent dangerous electrolyte abnormalities that aren't currently being investigated to find the cause, and then when you add in the high prolactin from PCOS and the narcolepsy, things get all confusing and you feel like there's nothing left. But, I haven't tried many of the new meds, and it's been a long time since I've taken another antidepressant besides Viibryd, which is def helping my mood, so there are still options. I had been on Geodon and a benzo for the past 11yrs so I really don't remember what happened w/ each med besides the ones that I had an extreme reaction to. At least I know what makes me gain 40lbs in a month and which send me to the hospital needing a sodium drip!

I am only taking the Neurontin for the nerve pain until after I get surgery and recover, which should be soon. I don't know of any other nerve pain meds. Tegretol, Trileptal, Lamictal- i cannot do. I'm going to ask to switch my dr if she thinks switching from Xanax to Valium would be better so as to kill two birds with one stone- anxiety/panic and muscle spasms. I think I recall that Valium is more addictive than other benzo's, so if that's the case, then I don't want to switch, I'll see what she thinks. That's really terrific that Neurontin helps your mood as well as your pain! I have heard that it can do that! Way to go paradoxical reactions for me, lol. I had switched from Lyrica to Neurontin bc I'd noticed the Lyrica made me feel awful and thought I could get to a more effective dose on Neurontin, but I actually think it is worse, so perhaps it's time to go back to Lyrica, where it's possible to take a higher dose at night that will level off by time I wake up and not cause as many side effects, as opposed to short-acting Neurontin.

Sorry to hear that you're in pain as well. It sucks that we can't completely get rid of our pain, but only make it a little more bearable for us to be able to function better!

 

[Neverthesame]

I wouldn't take what @Lucycat said as being unwelcoming.

I can understand why it might be taken that way, but she made a very good point.

While there is nothing wrong with doing research into the drugs you may be taking. If your doctor actually expects you to be doing all the work of figuring out what you should be prescribed, that's nothing short of alarming.

Yes, alarming. There is a huge difference between the marketing of drugs and the actual prescribing of drugs.

Unless you are licensed practicing physician, you simply don't have access to the data materials required to properly assess whether or not a drug is best (or safe) for you to be taking.

For example, with the myriad of issues, and variety of drugs the OP is already on. I couldn't even hope to suggest anything.

With pre-existing conditions like Narcolepsy, as well as a recent brain trauma, there's no way to predict what could happen to her.

Just for informations sake, here's specifically the reasons why I wouldn't want to suggest anything to her:

• I have not spoken with her as of this time. I know nothing about her personality, aside from what I read in her introduction thread.
• She has a TBI. This can make drugs interact strangely with the person's behavior. In ways that may not be easily predicted.
• Medical trauma. Rightly or wrongly, this person has a great distrust of anyone in the medical profession. Also including the administering of medications, by hospital staff.
• The OP is not set or content with the current medication regimen, currently prescribed her. Expressing distress of side effects from medications taken for other health concerns. There is just too much up in the air for me to feel comfortable with offering anything in the way of advice.

Now normally, I'd have just not said anything and moved on. But I see that Lucycat made a valid point, which may not have been phrased in a jovial padded down manner, but that is most certainly a valid one to have been made.

Now again, I know that we often discuss meds here. And yes they do often have common side effects, which can be useful to be made aware of. Which is totally fine.

But personally I would be more comfortable commenting on this topic if the OP had been to her doctor already, and had a list of options presented her, for us to provide practical input on. Rather than suggesting names of drugs out of the blue. I simply don't want to provide useless advice. Or worse, dangerous advice to someone who's trust in the competence of medical practitioners has been so badly shaken. For me personally, the thought that someone here may choose to take my advice over that of their physician, is terrifying. I'm not saying that's what would happen, I don't know that obviously. But I don't really know anything about this person, or their personality. So I can't rule it out either.

To the OP.
I am sorry that you have been through so much. Having read your introduction, I can understand why you are leery of trusting anyone in the medical profession. But when you go in to see your doctor, remember that you have the final word on what you take. So try to keep an open mind, ask lots of questions and of course fully research everything you are prescribed. I hope you are able to get meds that help you with getting yourself back to a good place.

And of course, welcome to the forum.

 

[ButransGirl]

My doctor expects nothing but for me to honestly and accurately how I've been doing.
I'm sure my doctor won't prescribe me anything that is unsafe for me, and even if something like an interaction got past her, my pharmacist would flag it and stop it. I'm not about to take anything that's not prescribed to me, so there's really no danger with anyone telling me what works for them, as ultimately it would be up to my Dr if she chooses to prescribe something or not.

Having a brain injury shouldn't stop me from accessing medical care. I don't really like to be coddled and this feels like a replica of my narcolepsy dr dumping me and my ortho canceling surgery bc the brain injury also scared them. that just makes it harder for me. i had to wait another month before asking my neurologist to treat my narcolepsy and now my hand is more atrophied and will definitely not heal as well as it would had I gotten surgery 3 months ago as it was scheduled.

It would only prolong my suffering to get a list of meds and then wait another month for my next appointment. I'm doing the same thing with another route. Asking for suggestions and then will present them to my Dr to decide on what is best for me.

I can't prescribe meds to myself, so I really can't understand why it seems like people are assuming I could just go down to the corner market and pick myself up some blood pressure medicine without a Drs advice. I trust my psychiatrist- I've been with her for several years. She knows what she's doing.

I would just delete this entire thread if I knew how, because I guess I'm not going to get any answers, but instead just some debates on how I should be treated differently from others because I suffered a physical trauma. I guess it would've been more beneficial to not ask any questions and just browse the board instead. My honesty really doesn't do much for me anymore.

Sure, there are certain precautions that Drs have to take when providing care for me, but we have to look at the big picture here- In order to get any type of prescription medication that anyone suggests, my Dr, who has been through years of schooling, would have to decide on whether she is ok with prescribing it or not.

The lovely discrimination and being treated differently than others that i'm becoming so familiar within the past 7 months has been staggering and eye opening.
Thanks for all the concern.

 

[Neverthesame]

I apologise if I said anything to make you feel discriminated against. That really wasn't my intention.