THE NEVER ENDING SAGA OF ADHD.....

[Dana Arcuri]

Do you ever feel as if you are simply spinning your wheels, aimlessly going in circles or lost in a jungle of a maze during your daily management of ADD/ADHD? Have you ever changed your ADDer medication to shockingly find out that it is taking you straight over the edge?

It is stressful enough having to cope with common ADD/ADHD symptoms, such as juggling to stay on task, remembering NOT to lock your keys inside your car, trying to force yourself to arrive ON TIME for an important business meeting or reflecting on how you impulsively lashed out at your kids for tracking mud all over your brand new carpet, but to suddenly discover that your new medication has MAGNIFIED your ADDer symptoms is like sinking in quicksand! The faster you frantically try to free yourself from the deep mass of wet sand, the more difficult it is to escape!

If you have ever felt this way, let me reassure you that you are not alone. As an ADDer, I have had moments, such as this past month, which has left me feeling as if I am on a never ending journey in stormy seas. In the beginning of this year, what began as smooth sailing rapidly turned into raging waters powerfully crashing upon me.

While I recently had a change in medication, it is understandable that not all mediation provides instant results, but my negative response to the medication was so intense that it literally left me feeling as if I have been drowning with no life preserver in sight. My life felt as if it were turned upside down.....

To complicate matters, I am in between doctors and my first appointment with my new ADHD doctor is not for several weeks. My best option to spare myself continual anguish was to discontinue the new medication. Unfortunately, the medication must stay in the body for a longer amount of time than I had imagined because even after I stopped taking it, I still experienced unpleasant side effects.

Finally, I am gradually beginning to feel like my self again and happy to be staying afloat during this chaotic medication change. The one thing I can count on is that there is never a dull moment in the never ending saga of ADHD!

[Cookie]

I hate when doctors think they know best. They don't. Just because they have a medical doesn't mean they know squat about how meds interact within every individual brain. I've been on Strattera, I really liked it. It made me feel nice and mellow and smoothed things out. My insurance plan won't pay for it and guess who put me onto that drug? The state aid I had briefly through DES, and we wonder why the government is broke?? (I digress...) So I was put on Vyvanse 70 mg, the max dose. It has the exact opposite affect on me Dana - it smooths out all of the things that cause you to have nightmarish symptoms. But I have noticed that I'm more forgetful, not sure if the Vyvanse enhances that symptom or I just now am noticing how forgetful I am. I'm not sure how long it stays in your body, not as long as some I think. Towards the end of my day I get kind of irritable and grouchy, could probably stand to have a 1/2 dose of the lowest dose possible. Had my doctor add Sertraline to smooth out the edges, but that makes me extremely groggy in the am and hard to wake up so I weaned myself off it.

I don't want to have to cycle through a different med to find the right dose and backtrack with my progress at work. Unfortunately for us, we have to cycle through meds to find the right combination that works. We have to be our own advocates in our treatments, persevere in finding the right solution so that we can accomplish our dreams.

[Sally]

Dana,

Oh my Gosh I can't believe what you have been going thru! I am taking Vyvanse and doing fine and also taking Wellbutrin and EffexorXR. My benefit program covers all of this. It is Ameriplan 1-800-
598-8664 I pay $82 a month for all of my meds and $39.99 for my Drs. appt. and other stuff. They can cover your whole family. Check it out, I have been with them a year now and it's been great.

Did your Dr. give you a card to have your Vyvanse covered each month? This is the number on my card for Vyvanse 1-800-593-7023 or try 1-800-364-4767. I have had doctors like yours before and I know how frusterating it can be. I always leave them and move on to another dr. even though
it's so stressful to start another dr.

My dr. is very condesending and talks right over me when I am talking. It makes me crazy. I think the next time I go I am going to take my boyfriend who I have been seeing for 6 months now with me
to my appt. and let him see what goes on. Have you ever taken your husband with you?

Off that subject, if you or anyone that reads this hasn't listened to the video that is about ADHD on the first page of our blogs it is great. I'm afraid if I go to that page to tell you I'll loose this comment.
I think maybe Lisa wrote it and it's about the 5th blog. Very interesting. It's 1:20 min. long but well worth the info.

I'm sorry you are having so many problems, I don't know how you do it. My prayers are with you to keep your strength.:)

Sally

[Dana Arcuri]

Hi Sally,

When I first started taking the original Adderall in the generic form, immediately I had a positive response. However, the dose was very low and it was only for one time per day. Therefore, I was only receiving about 4 hours of the benefits from Adderall.

After one month, I knew that I needed an increase in my dosage and I needed to take Adderall at least twice a day. For 5 months, I continually discussed my concern about the dosage of Adderall to my psychiatrist, but she would not increase the dosage or increase the amount of times that I take the medication.

This was so frustrating and I felt as if my psychiatrist was absolutely not listening to me. My psychiatrist continued to say that she believed that STRESS was causing all the horrible ADHD symptoms and she minimized that my challenges were due to ADHD.

Talking to her was like talking to a brick wall......After many attempts to discuss my concerns, I became extreme irritated with her lack of knowledge and understanding about adults with ADHD.

Then in October, my husband unexpectedly got laid off of work & we lost our medical insurance. A friend referred me to a pharmaceutical company that provides free medication to low income families. I applied to a few different pharmaceutical companies that make my medications. Thankfully, my husband & I were eligible for the medication assistant program.

The company that makes Adderall was NOT the company that provided assistance, but the company that makes Vyvanse does provide the assistance. My doctor said that I could try Vyvanse if I was eligible for the free medication. I received notification that I was eligible to receive Vyvanse so in January I began taking it.

My doctor would only permit me to begin Vyvanse on the smallest dosage so I was only taking 20 mg Vyvanse once per day. I was never told to wean off of Adderall or to do anything specific. I have to wonder how safe it is to jump from one medication to another?

From the first time that I took Vyvanse, instantly I began to experience a HUGE increase in anxiety, irritability, frustration, anger, hostility, lack of concentration, lack of clear thinking, lack of organization, lack of staying on task and lack of attention. To sum up my response from Vyvanse, it was similar to how I responded to Ritalin & it was a living nightmare!

My husband, kids, relatives and myself could clearly see that I was NOT myself and that something was wrong. Due to the severe negative side effects, I discontinued taking Vyvanse. I contacted my doctor to inform her of the negative side effects and I was placed back on Adderall.

I contacted the pharmaceutical company that makes Vyvanse to discuss the negative symptoms & side effects that I was experiencing to inquire about it. The individual said that the company has not researched this medication to determine if Vyvanse negatively interacts with other medications, such as antidepressants. He could not tell me if my negative symptoms were "normal" or not. He suggested that I discuss my symptoms with my doctor, which I did, but she knew nothing about this medication.

What frustrates me as an ADDer is that I feel as if I am a "guinea pig" for trying out medications. The most difficult challenge is when the maker of the drug does NOT provide sufficient research to determine the safety of the medication, the effectiveness, the possible side effects and the possible
adverse reactions to their medication when the patient is prescribed more than one medication.

Due to lack of information, I have no idea how long Vyvanse stays in the body. Basically, I am left in the dark to cope with severely disturbing symptoms that are quite unpleasant and causing complete havoc on my ability to function from day to day. This directly effects my relationships as well as my emotional and physical well-being.

Instead of Vyvanse reducing ADDer symptoms, it literally MAGNIFIED each one of them, plus, it dramatically caused severe anxiety, irritability, hostility, anger & stress. Gee, this medication may have been free, but I most certainly had to pay a HUGE PRICE for it. What appeared to be a wonderful blessing ended up turning into 3 weeks of pure hell!

This is what I consider the never ending saga of ADHD........Always grasping to pull myself out of the raging waters, determined to find a better strategy, persistently pushing forward, yet, unexpectedly taking three steps backwards.......Drowning in the stormy sea with forceful waves crashing upon me.....To once again, find myself on another exhilarating and not so pleasant voyage that turns my life upside down.

For all ADDers, take heart, this is not the ending of my story or the ending of your story......

We may come against plenty of negative battles on our ADDer journey, but by remaining HOPEFUL, by PRACTICING helpful methods that we have learned along the way, by PERSEVERING through all of the difficult obstacles and by PROACTIVELY taking the necessary steps to stay afloat, we will SURVIVE, we will gradually find ourselves on smoother waters to ACCOMPLISH our dreams, to SUCCESSFULLY reach our goals and to make a POSITIVE DIFFERENCE in the world around us!

[Sally]

Hi Dana,

What happened with your adderall? I thought that was doing well for you?

I tried Straterra and I was a mess. Really depressed and no motovation all I did was sleep. I am now back on Vyvanse and I like it but I have just come to the realization at least for me all of the meds have side effects. It's just a matter of which is worse the meds or the ADHD without meds. Like you, I am over it, seems like it never ends.

Last time I went to my doctor I told him I was seeing shadows go by the window or across the floor that wern't really there. He said that is definately a side effect of stimulants and let him know if it gets worse. Great, now I am delusional.

I was reading a book the other day about Alzheimers and it said starting at the age 50 we should have yearly memory testing done as a preventative. If caught early the memory diaseases can be prolonged. Have you heard anything on this? It's really frusterating to me that none of my doctors tell me about these things until after the fact. I've noticed my memory lately seems worse