Don’t know if this is good news or bad news…but I have finally begun weaning off of Xanax. Hip Hip Hooray!!!
I have been hooked…and I mean hooked, on it for 3 1/2 years. I took .5 mg at 3-4 times per day.
I could not get off of it. It will help as a vestibular suppressant to some degree, but not great. However, if I tried to stop the drug, all hell would break loose. I would look like a junkie coming off of oxycontin :shock:
My Neurologist up here prescribed Klonopin about 4 days ago. I have been taking just .5 mg x twice a day and it has kept my anxiety at bay. During those four days…I have taken a TOTAL of 1 Xanax pill…yeah. Just did not feel a need for any Xanax…yeah!
(I know I have only substituted one benzo for the other, but it still makes me feel better…ha :lol: )
Still taking 25 mg of Topamax for the 4th straight day knowing I have a long road ahead of me.
Ultimately, I am curious as to what dosage he will ultimately want me to go up to. He seems pretty aggressive (which I like) and is not afraid to push the envelope (which I also like).
Will keep you guys posted regarding the new meds and I hope things go well. I recognize that i will not see changes for quite some time (if at all)…but at least I am heading in a different direction Take care all! Todd
So Todd,
First of all, it’s a good thing to get off of xanax. The longer acting benzo will be better for you…
Have you had any response at all from the Topamax? Just curious…
Kelley
The fact that you’ve had no catastrophic reactions to the topamax is the GOOD news, Todd! I’m assuming that’s what Kelley may mean. I felt immediate positive changes with topamax at only 15mg. once per day. But, congrats on the immediate success with the klonopin - it really is a great med and should help you move over from the xanax. It has helped me immensely as I told you by private message. I also don’t think that it will necessarily take 3-4 months to get noticeable results from topamax since you are also taking celexa as well… At one point you are bound to notice that you just don’t feel as crappy, then don’t feel as dizzy, etc. etc etc.
Way to tackle this stuff, Todd.
Gail
I just wanted to let you know that all 100 lbs of me went up to 175 mg of topamax and I had no adverse effects except for minor tingling in my hands and feet in the very beginning. I found this med extremely tolerable. Unfortunately it did not help my symptoms, but let’s hope it is the drug for you and cleans up your MAV.
Given you tolerated SSRI’s and tricyclics so easily my guess is you will tolerate this med even easier and all it will do is help your symptoms along the way
Hey Todd! When I went to my GP yesterday he also decided Klonopin and Topamax for me. Klonopin alone for a while though. Glad to hear you’re not having a bad reaction to the Topamax so far, from what I hear that’s good news. I hate that it’s such a slow process but seems like you will be able to move up pretty quickly. Yay for the Klonopin replacing the Xanax! Do you notice a different feeling from the Klonopin vs. the Xanax? Did you get sleepy from Xanax, what about the Klonopin. I have taken Xanax periodically and don’t love it, just not dependable. My mom has been taking Xanax for several years and wants to stop taking it so I told her about your experience.
Yes, I think she meant that if by 4 days at 25 mg of Topamax you are not feeling poorly or having side effects, you are doing extremely well! And yes, it does take a number of months to find out if this med will work; since you were on some other meds, you may find out sooner, but statistically it seems that you need to be in on it for a while. Also, as we have all noted, people tolerate this med in different ways; MAVNY had hardly any side effects -she is a rarity though. I think most fall in the middle of the spectrum with SOME, then there are others who get nailed with lots. Just luck of the draw and body chemistry it seems. And I still would recommend titrating slowly. Even if you do find that you have some side effects, as time goes on, some will dissapate, others you get used to, and some you fix with an adjustment to your dosage if the med works for you. I know; that’s my experience.
Good luck and keep us informed as to you progress! ~Bonnie
PS. I am on low dose Klonopin as well and I love it!
First of all , you guys are all champs in my book!
As I have mentioned on multiple occasions, I am the Operations Manager of our Heart and Kidney Transplant Program in Spokane, Washington.
If any of you develop any cardiac and/or renal dysfunction and are in need of a clinical work-up and/or an organ transplant…just remember that you have earned a credit at my hospital. I will “cook” the books to ensure that you are taken care of :lol: And for any car buffs out there…we will reserve the Chevy 350 engine for your new “motor”…ha
Alas…I digress
It has only been 5 days…and that is certainly not enough time to tell anything, but I feel better on the Klonopin than on the Xanax. Things can change…and very well may , but for now, this is a bit encouraging. In the last 5 days, I have taken a total of about 2 Xanax pills…vs my normal 20 during this time period…hurrah!
No effects yet with the Topomax whatsoever (good or bad) I am at 25 mg…going up to 50 in 4 more days. I am still on Celexa at 60mg. My expectation levels are extremely low…not wanting to set myself up for failure again. And I do recognize that this a marathon and not a sprint. I will keep you guys posted along the way.
To my extended dizzy family (who has a heart or kidney whenever they need it ), your friend in transplant, Todd
God Bless , take care, and have a nice weekend. Love ya! (my wife would think I am getting all gushy here :lol: )
Hey Todd,
If you find anyone who doesn’t need their lungs since they gave up their ticker, can you put em on ice for me? I have a sister who is waiting for a double lung transplant at UCLA…the waiting is horrible…any advice? our whole family is holding our breath…she has cystic fibrosis and about 15% lung capacity right now…makes my MAV seem like a paper cut.
Sorry to hear about your sister…it is gut wrenching while watching a loved one wait on the organ donor list. I have become quite an advocate of organ donation and promote the opportunity to educate people about organ donation every chance I get.
Regarding your sister…
You need to realize that a double lung transplant is a very difficult procedure. Often, the success rates increase exponentiatially if the heart is procured with the lungs and transplanted at the same time (even if her ticker is in good condition). Talk to your transplant team about this.
Also…AND VERY IMPORTANT…
The wait times are different within different organ procurement regions (ie. Los Angeles Area vs. Seattle area). Certainly, blood type, HLA antibodys, PRA levels, etc play a factor in how long a person waits for an organ.
However, I think it would be wise for you to contact me to explore which OPO (Organ Procurement Organization) might have the shortest waiting time based on your sister’s current medical condition. Believe me, they are all not the same!
I will be happy to coordinate your sisters care. Feel free to email me at tseiger@hotmail.com (Finally…I am able to “pay it forward” with something that I am saavy with ) Take care Kelley…looking forward to hearing from you and hopefully helping your family through these difficult times. Kind regards, Todd
Serious question Todd: I have signed up to be an organ donor (we do it through our drivers licenses in my state) - not that I’m planning to die in a car crash any time soon, but do you think they might not want my organs if they have Topamax in them???
Or is it just my brain that they’d reject for transplant? :lol: (That question was not serious.)
Todd, you are one warm hearted, generous human being.
Kelley, so sorry about your sister. How awful for her, you and your family - all that waiting and hoping. My heart goes out to you. It’s great that Todd can give you guys some help to navigate the system.
Maryalice…no question, Topomax WOULD NOT rule you out to be a donor.
Despite common misperceptions, the most prevalent type of donors are people that that have immediate head bleeds (ie brain aneurisms). People often think that crazy motor cycle drivers tend to be the donors , but that is not generally the case. They do so much damage to their organs that they are not useful to our recipients on the wait list. It is the person that has a brain injury (is declared brain dead)…but has full organ activity that is the optimal donor.
Kelley…again, I encourage you to contact me. I can list a bazillion things that I am not smart in :lol: … this is not one of them.
If I was able to help your sister, maybe that is the reason that I was drawn to this board and to help a fellow human in need.
(And God willing…it will earn me a credit to beat my dizzies once and for all…kidding just kidding :mrgreen: )
Take care and have a great weekend everyone. I have 2 more days of Topomax at 25mg , then jump up to 50mg. No negative side effects whatsoever so far. In fact, the Klonopin has helped me out more so than the Xanax. I am NOT taking his recommended 2 dosages at 2 mg each…don’t think I need it. 1/2 a tablet seems to be chilling me out just fine.
Have a good one , take care, and love you all…Todd (p.s. I am coming up on 17 years of marriage to the best (hottest Help a brother out!
Hey Todd,
Again…another med and you with NO SIDE EFFECTS!! Wow! You are a migraine anomoly! Here’s to hoping this is the combo! Yay for Klonopin!!
I did send you an email to the address you provided…
Re: your Anniversary…you up for a trip to Vegas? I can’t remember if you said you have kids or not, but would love to meet you in person and can help you make it a memorable time…
You have my personal email now, so just let me know…I don’t want to hijack the thread
Todd, my dad died from primary scleroscing cholangitis. He was on the liver transplant list at a couple of centers for a very long time. My mom had dementia, and he felt obliged to keep himself alive as long as possible, so he’d be available to look after her. When she died, he took himself off the transplant lists – thought any available organs should go to folks who had family who needed them.
Even though he never got the transplant, people who work in that area are all heroes in my book. Thank you for the work you do.
Take care all! Todd
~Bonnie
~Bonnie