I have been taking this medication since 2006 and want to share my experiences in taking these medications. I initially was placed on Adderall which is the medication most often prescribed, and normally tolerated well. The normal dose for this medication regarding this disorder is 30mg. I started with Adderal and in a very short time was able to release the excess fluid. I have always been extremely sensitive to all medication. I began to have insomnia and could stay up all night and work the next day. I was extremely talkative and jumped from one topic to the next with difficulty focusing. My reaction was not "normal" for most patients. I was switched by Dr. Check to Dexedrine (extended release) and did well. I am unusual in the fact that I only need to take 10mg per day. It varies with each person, how they react to the medication, and the severity of the disorder.
I still went out of remission since I was only taking the medication during my worst episodes instead of the prescribed daily dose. I would get very bad with edema and pain due to my herniated discs which the fluid would sit on, resulting in headaches that felt like migraines (cervicogenic headaches). I experienced numbing down both arms like Carpal Tunnel Syndrome all due to the fluid sitting on those herniated discs. It took me a few years to get on board with taking the medication daily. I noticed great changes in that I never became bedbound again or at the least chair bound for several week every year like I did before. All my symptoms greatly subsided and even with changes in the weather (barometric pressure) I was functional in my life and began to get back the quality as well. I did so well that last year I became a yoga instructor. My husband said that if someone had told him this was possible he would have laughed (and he is a very supportive husband and friend).
During this process, over the last several years I had to go back to taking Adderall as the Dexedrine was not working as well. My system seems to change every few years. I did well again within a few days. Recently, I switched yet again back to Dexedrine as the Adderall caused tachycardia (increased heart rate) having my heart rate go up at about 120 beats per minute (normal is 60-100). My heart rate at rest was always around 70 so I knew I did not feel "right" and got my stethoscope and listened to my heartrate. I am doing fine again.
Sometimes you may need to take the brand name or the generic of either drug which may work better for you. Dr. Check and Dr. Cohen will work with you until you find what is right for you and your body. I fought going on this medication as I try to do as much naturally and holistically as I can. I am glad I decided to take the medication every day as it gave me my life back. I would suggest taking your blood pressure and monitoring your heartrate. I would strongly suggest you do not ingest caffeine of any sort as it increases nervousness, irritability and other unpleasant side effects. I drink decaffeinated coffee in the morning so I enjoy my coffee without the unwanted side effects. I am unusual in that I only take 10mg per day and that is enough to control my edema except for a few days per year, mostly with changes in weather/barometric pressure, then I may increase to 20mg. Most people I have been told start at 30mg and may go up to 50 or 60mg as needed while out of remission.
To help with dryness of the mouth you can use Biotine products found in your local drugstore. I love my waterpik and chew natural gum without aspartame which I buy on amazon called PUR. The wintergreen one last the longest in keeping your mouth fresh. Using mouthwash helps as well, one without alcohol. Once you have adjusted to the medication, you may not need to do all this anymore. It was just my experience when I was first on higher doses of the medication.
The medication also helped with my itching due to the toxins spilling into the extravascular space. I still experience this from time to time, although much less in frequency; and use a prescription cortisone cream prescribed by my dermatologist which helps greatly and almost immediately. If it is systemic, and you feel itching all over your body, your doctor may prescribe Atarax which is helpful. I haven't used Atarax in over a year. My digestive issues are not even close to how severe they could be ranging from some nausea to not being able to get food or water down. It feels like you have an intestinal obstruction or ileus. A few times a year I may need to take Reglan which is prescribed by my doctor and saves me any more trips to the emergency room. Please refer to page on my Blog which gives you more remedies to help with the symptoms and problems associated with this disorder.
I hope this helps and any other questions, please feel free to write to my email address. On the contact page there is my email as well as Dr. Jerome Check's information so you can go right to the source. My hope is that you get the help you need and start living your life to the fullest. Love and best wishes to you all.