Introduction
 

Hi, my name's Kay. 1st off: there should be a "manic" option for "my mood," but I guess I'm drunk & that fits. So, whatever.

I have progressive MS, bipolar II, and GAD. I'm 30 yo., female, and I'm married. I'm not going to have children. I have 3 cats & they're my babies.
Unfortunately, I'm on SSDI because of physical handicaps, cognitive deficits, and MH issues.

Both my parents were alcoholics, as is my husband (surprise, surprise!). I had a hard childhood and was verbally and sexualy abused.
My mother passed away in 1997. My dad has mellowed a bit, and has been married twice since. I have an sister (31) and a brother (21).

I see a psychologist every 2-3 weeks, and a MH nurse practitioner every month. I have an emergency plan and try to do what I can to promote a better quality of life for myself.

For MH meds, I take: lamictal, effexor, low-dose xanax, and trazadone.

I take monthly infusions of Tysabri for my MS.

I have pain issues because of MS and Tysabri treatment- and it isn't currently well controlled.

My neurologist gave me a sample pack of nuvigil for fatigue at the last visit. I've used the old-school version, provigil, in the past with some success. I took one pill last Friday and I've been manic ever since. I will not take it again, even at a reduced dose, ever.

I usually sleep about 12 hours a day + naps, but operate poorly on that. I've had a couple of totally sleepless nights in the last week or so, 2 good nights' rest, and several nights of hourly wake ups. I'm like the walking dead. Meds were keeping highs/lows/suicidal thoughts minimal and less severe... with exceptions.

Cognitive problems + lack of sleep + mood disorder= 1 red hot mess

Alcohol intake & number of cigarettes have increased. I'm irritable, can't sit still, and can't stop all the racing thoughts.
I keep thinking I'm finally going to come down, but it hasn't happened, but I'll welcome it when it comes.

Right now, I'm at my worst. Can't stop talking, but my husband can't understand me because I'm so tired I'm slurring. My ability to find words and make sense is failing, but I don't think I should be made fun of because of it. My mind is dragging my body around.

Nice intro, eh? I was holding back, as I'm sure you can understand.

-Kay

Dear Kay,

Welcome! :)

My 2 cents: You likely do not need both the Effexor and the Trazadone. The Lamictal can be activating. You don't need two anti-depressants on top of the Lamictal.

Talk to the Nurse Practitioner about a med change.

Thanks for the warning about the Nuvigil. I have some samples that I have not taken.

I'm on my way to sleep. 'Talk to you later.
M.

I only take a small dose of trazadone at bedtime to help me sleep (it usually helps), but obviously not helping right now.

Thanks for the welcome and the advice, Mari. If you do decide to try the nuvigil, I wouldn't start with the whole pill. I was told to take the full 150mg pill first, and cut it in half if it was too much.

Thanks again!
Kay

Dear Kay,
WElcome to the bipolar forums!
I have to say that you may need a med to slow you down, lamictal really helps on the depression side but I don't think it helps with the manic side.
YOu may need to take an anti psychotic for a short time basis to bring down the mania. I take geodon, with out side effects for me.
there are others you may have heard of.
abilify, seroquel, some take that to sleep as well., zyprexa but only on a really short term basis, geodon which I take long term but I am bipolar 1 and need it for maintenence.
I am sorry that you are going thru all of this and wish you had more support.
Call you pdoc/nurse on monday!
bizi

Welcome aboard Kay!

i too want to encourage you to see your doctor regarding possibilty of:

- stopping the Effexor, at least for now. it will probably have to be tapered. this drug is activating and could easily contribute to your state.

- adding a mood stabilizer/anti-manic agent. The Lamictal has antidepressant qualities and helps increase time between episodes but does not work against mania. can be, but doesn't have to be an antipsychotic - lithium and depakote are still used and both work pretty fast.

keep us posted!

~ waves ~

Hi I'm Donna and I am not bipolar. But I have a son that is.

I also have a son that has epilepsy and anxiety. I also have
anxiety and a few other issues.

But what I take from this group is what I tell others is the best in the forums.

Its the fact that we are hear to listen and try to help. Some are very
knowledgeable about medications. And then some of us just are good
at listening.

Donna:hug:

Dear Kay,
Do you like your psychologist and NP?
I've noticed on these boards that people do have a good chance of getting better when they have professionals on board that they know and trust.

M.

Hello there !!!

Im Blue, well, Im Majo... :rolleyes:

Like Donna said, we are here to listen :) Share :winky: HELP ! :hug: (Oh man, this forum has helped me more than anything/anybody in this life!)

So, WELCOME !!! :)

Im bipolar II, have fibro, hypothiroidism, alopecia, a dog, a nasty group of people around me, the best cyber friends ever, 2 eyes that I hurt, 100 extra pounds and... more issues ! :o

Anyway, welcome again !!! Take care ! :hug:

Thanks for all of the support and good advice, guys!

I know I've been quiet for several days, but I haven't been able to settle down enough to post or read.

I love my psychologist. She's fantastic! She knows my medical history well, and is very familiar with the details of my life stages. There's a great exhange of thoughts and ideas.

I also really liked my MHNP, but she's moving to a private practice where she only sees patients once a week. She's older and is taking more and long vacations. She doesn't even have a receptionist, and covers for her self via cell phone...

I saw my psychologist on Tuesday and we decided that I'm not stable enough for the above situation. I'm going to try a new MHNP in my psychologist's practice. My psychologist recommended 2 people, and one prefer if it I saw one in particular (who also worked for a long time in medical surgical nursing) who may not be accepting new patients. So, she's going to put a call in for me.

I'm still all over the place, but not as bad as before. I'm still not sleeping through the night, but some of that is due to pain.

Just giving you guys an update. I hope to settle down some more so I can read and respond to more posts.

Thanks again,
Kay

Dear Kay

i am glad you have such a good relationship with your psychologist.

she sure sounds on top of things and helpful in making sure you are getting the care you need.

i hope things work out with the new MHNP she is trying to hook you up with...

thanks for the post... post when you can

:hug:

~ waves ~

Yes please post when you can. We will be here either way.

And I too like the fact you have a psychologist you like.

Good luck getting in with the next person too.

Sorry I don't know the abbreviation.

Donna

Donna

MH = Mental Health

NP = Nurse Practitioner

hence
MHNP = Mental Health Nurse Practitioner (i think). :o

it would make sense since Kay is referring to the person who takes care of her meds.

~ waves ~

Thank you.

I hadn't thought of that.

Donna

There are some psychologists who have prescription priveleges...it sounds like yours doesn't so that is why she needs the nurse practioner to write her scripts for her...she would replace a pdoc.

hope you get one soon...glad that you are somewhat better...sorry about the sleeping issues. there are many here who can sympathize with you..lots of folks that have sleep issues.
(((((HUGS)))))
bizi

Kay...

haven't heard from you in a while... wondering how you are.

any news?

~ waves ~

Thankfully, I've come down! Alcohol intake is down! I've decided to try to quit smoking... tho I should have given myself more time to stabilize before giving up the butts.

I got an appointment with my psychologist's 1st choice MHRN, but it's not until early September.

I saw my PCP and he gave me some samples of a prescription NSAID to help with the joint pain. It's helped a little bit, but still needs improvement. So, I called today to ask if I can increase the dose and I'm waiting to hear back.

I started a new drug (Ampyra) that's intended to help MS patients with the speed and fluidity of walking. It's knocking me out a little bit, and I'm itchy (no rash yet tho) all over. I really wanted to give this new med a chance to work, but I think I've got an allergy.

I have my Tysabri infusion on Weds. and that will knock me out for a few days...

So I'm doing okay except for the S.O.S. like $$$, medical & medication issues, and the husband. Anxiety as usual.

Tired, but okay. Thanks for asking! :)

-Kay

well I am glad that you have an appointment. september is not that far away.
hoping that your side effects from your med change go away, sometimes they do that after a week or two.
thanks for getting back here.
((((HUGS))))
bizi
you have a lot on your plate!

Dear Kay

good to see you... thanks for checking in!!!

that's woww... down and alcohol intake down... and good luck with quitting smoking!!!! yeah!!!! (been there... sigh.)

i hope the new med does work out... perhaps it is transitory. i hope you don't have an allergy. if the itching keeps up please check with your doctor - be safe.

and keep posting :)

~ waves ~

I'm still itchy, but still no rash. I took benedryl last night and it helped with the itching.

I'll see one of the MS RNs tomorrow when I go to Boston for my Tysabri, but I think I'll put a call in today to make sure it's okay to keep taking the med.

I'm not doing great with the smoking yet, but I'll keep on trying.

-Kay

P.S. I'm feeling well enough to start reading and replying to other threads!

glad that the benadryl helped!

Dear Kay

yes i've noticed you've been around more. :)

good idea to check about the med.

and do keep trying with the smoking. i've been able to quit cold turkey at times. other times i had to cut down and use all sorts of "tricks" to progressively cut down more and more... other times i've quit and restarted w/in 24 hours... quit and restarted, quit and restarted, etc. just keep at it. you will get better at it. :hug: (practice makes perfect! ;))

~ waves ~

I don't have to stop the Ampyra! :) I guess just itchy is okay.

I had my Tysabri (once a month IV med for MS) yesterday. Because of all the pain I've had, my neuro may stop the treatments for a month or 2, or add another med before the treatment. I'm supposed to call them in a week to update them on my pain level.

My PCP wants me to hold the arthritis med at the current dose for 2 more weeks. I'm not happy about this.... I feel like I'm being hung out to dry waiting for all the docs to get their **** together. I have a rheumy, and may end up back there pretty soon.

My anxiety is high right now, and I'm not doing so well with getting off the butts. But I'll keep trying.

-Kay

Kay, I haven't been around much, and 'though I've read your posts, have been too blah ... to focus and write.

I also have an autoimmune condition - lupus. And true to type, as I approach my fiftieth year, I have to stop working full time. I no longer can make definite plans or keep appointments, as very often the pain or the fatigue make it hard to get out of bed.

As I have bipolar 2 as well, and there are possibilities of overlapping drugs. Many mood stabilisers also are used to treat pain so one has to always be watchful. Trying to check on drugs prescribed by either specialists so they don't cancel each other out or result in an overkill, takes a lot of energy and exchange of e-mail with the doctors.

I don't really know about the drugs prescribed for MS, but do check them up to make sure you are not being over prescribed.

You do know that Effexor is also used to treat MS, don't you?

What are you being given for the arthritis?

We meet under circumstances that nobody should have to be in.
But it does help to be able to reach out to people who are going through similar situations and can empathise.

Dear Kay

glad you can stay on the Amypra. :)

good luck with getting all your docs in a row.. :o it is hard coordinating so many specialists and the PCP.

yes do keep trying with the cigs. if you are mostly able to stay off them, don't get down on yourself about the 'slips'. if you mostly can't stay off them, even just trying to reduce can be helpful.

one of the "tricks" i used to use was to make myself put off having one when i wanted it. sometimes for just five minutes. other times i bargained with myself for an hour. when i was managing better, i bargained for progessively longer quits... a day... 2... then a week.

i hope your pain levels come down. take care. :hug:

~ waves ~

Isis, thank you for your reply.

I'm on a slew of drugs, including Effexor. I also take lamictal, xanax, and low-dose trazadone (for sleep).

For pain, I take lyrica, and an arthritis drug called arthrotec. I also have to take meds for urinary and bowel problems.

My MS Specialist monitors all my medications, and I check in with the MSRNs whenever I'm given a new med or change a dose. They meet with the psychiatry dept. at the hospital regularly. I signed releases so they can talk to all my docs. And they have questioned some psych drugs in the past.

It's good to have a support system like that in place. You're right: it's hard to manage our meds with more than one condition. I'm sorry you're having to deal with Lupus and BPII, but you seem to know you're limitations and have a good knowledge of meds.

I also have difficulties making appointments d/t fatigue and pain. My docs, friends, and family all know this, and are very understanding. Most of the time, I end up inviting people over here, but they know it's pretty likely that I'll have to take a nap at some point.

-Kay

Whoa...

A friend returned from across the country. I planned a very low key dinner at my place, but we ended up going out with my husband to a couple of bars. I got hammered. I don't usually drink that much unless I'm manic.

The shocking thing (to me, anyway) was I was having a grand old time, but was very irritable and confrontational.

I've read a couple of posts on my regular MS board about mood changes (for the better) for people who take Ampyra...

I don't quite feel manic, but I could be. There has been some ridiculousness, and I've been pushing my physical limits and my pain, balance, and gait is worse because of it.

Maybe manic, still manic, or another drug side effect.

-Kay

Hi,

I am not schooled in the other issues so I am only responding to the bipolar:
The Effexor might be a problem.
You say that you are taking Trazadone very low dose. Has that changed?
Has the Lamictal changed?

Have you drastically changed your smoking? Cutting back could have effected mood.

-->>My suggestion is to call the pdoc on Monday. This is important.

M.

Dear Kay

i agree with Mari it would be a good idea to consult your pdoc/MH person about this.

do you have someone at this point? i remember you were to see someone new that your therapist recommended... did that happen? if not, is your old NP still reachable?

~ waves ~

Thanks guys!

I was able to get an appt. with the MHRN my psychologist recommended, but my appt. isn't until September (the 7th or something). Maybe I'll try to contact my old prescriber at her private practice, but she only works one day a week. I could also try to get in to see someone else at my MH office sooner.

I agree that the effexor isn't helping me come down. I'm on 150mg in the am, and 75mg in the pm. I've thought of weening myself down slowly.

I'm also having trouble focusing and trolling the internet A LOT looking to buy **** I don't really need. I am sleeping a little better, though.

UGH.

-Kay

it can't hurt to try to contact your old prescriber. you said she "covers herself" by cellphone... does that mean you have her cell #? or if you call the private practice you may be able to leave a message that you are revving up and wondering about reducing the effexor and/or if other tweaks are warranted. she might contact you sooner. never know.

not knowing you or your history with depression, and since you are sort of between practitioners, i can't suggest to you to make changes on your own. that said, there is good rationale for reducing the effexor.

if you decide to go that route, you need to taper it slowly - many people experience withdrawal sx. i do have a concern that the pills/dosages you have might not allow you to reduce by small enough amounts at a time. in that sense, it might really be better to get hold of a doctor. they may also want to make other changes that can be done faster and will help you faster.

good that you are sleeping better!

~ waves ~

I'm smoking again. I don't think quitting will work until I'm more stable.

I do have my former practitioner's cell #, but I feel kind of strange contacting her since I won't be continuing to see her. I may just suck it up and give it a try.

I made an appointment with my psychologist (next week), but wasn't able to get in to see/ talk to anyone covering.

I also contacted the MS Center re: severe pain. I won't hear back until later this afternoon or tomorrow, but they're going to brain storm. My neuro may be able to suggest another med, or send me back to the rheumy, or refer me to someone else in Boston.

I'm not sleeping well again. UGH.

Thanks again for the advice.
-Kay

YOu are under alot of stress, I understand that smoking can help calm people down, I jsut know that right now is not the best time to try quiting.....but a better time will come when you are more stable.
Don't beat yourself up over this, you have time, you can do this.
bizi

Hey there Kay

yes don't sweat it if the not-smoking isn't happening right now.

sometimes we have to pick our battles... or at least schedule the ones we can control around the ones we can't.

don't give up on the over all idea. when things are more settled and you have settled in with a new doc, you can resume your efforts. you might want to do it with the help of a doctor and use tapered nicotine therapy.

~ waves ~

I do plan on trying again. I've quit before- once for 9 months, once for almost 2 years.

Dear Kay

that's great! :) you will be able to do it!

the last time i smoked was about two years ago but i don't know the exact date. i can't imagine starting again this time. before that my longest quit was for a year and a half many years ago. moving to europe this last decade destroyed me. when i got here, it wasn't even illegal - smoke everywhere, in the office in bars restaurants... when i got here i mostly didn't smoke. then i was on again off again a few months at a time. before quitting i had smoked more often than not for about a year.

there continue to be problems even now that it is banned in workplaces and public indoor areas... :Sigh: i don't get tempted though - actually second-hand smoke always bothered me. i used to get bothered even by the smoke coming off the lit end of my own cigarette... :rolleyes::eek::o

~ waves ~

Hi, I'm Donna

And I have some issues with fibromyalgia. And at times we really look
at arthritis big time. Right now both are stable. But I need to remember
to call and get my neurotin refilled.

I also need to get some other refills. Ugh, I hate it when I realize this.

So keep posting, and I'll remember to look.

Donna:grouphug:

If the neurontin is working for you- great. If your pharmacy offers it, sign up for ready fill. They'll call you if you have had it filled, but haven't picked it up yet. I do reminders via my cell phone, so I can call and get another script before I run out of med.

Neurontin didn't work for me at high doses. Lyrica was approved by the FDA for treatment of Fibromyalgia, but treatment for MS is considered off-label and you have to do a trial of neurontin first.

Unfortunately, I have a higher copay for Lyrica:
neurontin is $20
Lyrica is $40

But it has worked for me, so it's worth it.

My MS neuro wants me to see another rheumy in Boston- the appt. isn't until Nov. 2nd tho. In the meantime she's going to increase my Lyrica to see if it offers me any relief. They considered stopping my Tysabri treatments for 1-2 months, but that's not going to happen. They think something else is causing the pain- not the Tysabri treatments.

In the meantime, I'll stay on the Arthrotec for now. I'm going to call my PCP next week to see if he's willing to up that dose.