ADHD medication

[Sandi K]

Karen, I haven't seen Rampmama on BTG since that time and I think it was over a year ago. That's the only contact I've had with her. My GP told me 'there is no science to back up' what we are doing but she thought it was worth a try because the amphetamine I'm on is also prescribed for narcolepsy (narcolepsy is falling asleep all the time). I don't fall asleep all the time but the thinking was if it fights narcolepsy then it must work for fatigue.

Sally, my GP explained there are 2 paths for ADHD meds. The Ritalin path and the amphetamine path. I can't remember how she explained the differences but in my specific situation she thought amphetamines were the best option. It would be different for everyone based on their health and other meds they are taking.

Sandi K. Xoxox

[goldfish.girl]

Sally, I'm looking forward to hearing what your doctor says.

I haven't spoken to my GP, I spoke to the neuro psychologist about it so it will be good to hear Scottish GP's views on this. Good luck.

Michelle xx

[MaryB]

I am on the trail of researching now. I started with the first lead left by the first post. She has a link. I am not finding anything really new. Think I will look under chronic fatigue and Ritalin next. AS what we have is like CFS- in my mind. WIsh I had a pill in my system now as I am desperately trying to stay awake the past 4 hours. I tried to mow a bit but when the sun hits me in the eyes it sends shooting pains in my head.

[Sandi K]

I had my follow up appt with my GP today. She doesn't know how the blood vessel swelling is related to the fatigue but she doesn't dispute that it's related. She's not worried about the meds becoming habit forming for me because I've not had the problem in the past and we will continue to monitor my usage.

It's been so successful to this point and the goal is to slowly extend my day. Right now I'm good for about 3-5 hours. My dosage will now be 1/2 a pill in the morning and the other half 1 hour and 30 minutes later for a total of 5mg I think it is. The medication peaks so this will give me two peak periods and extend the energy for more hours.

Sandi K.

[MaryB]

Hi all,

I started my Ritalin 5 mg per day by my Neurologist on Sept 18th 2012. One year after my SAH. I believe the dr. was waiting to see where I was after I year recovery. Which makes great sense to me. I have spent the last year or more suffering great fatigue, unable to cook a meal, grocery shop, focus, multi task etc.

I should mention I also have fibromyalgia and 6 months prior to my SAH, stoke, vertebral artery dissection and small brain tumor I started suffering from extreme fatigue, muscle spasms, bothered by heat and have a few autoimmune disorders as well. I had also started 4 months prior to SAH to write nonsense in my charts at work where I lost my train of thought but kept writing. I believe I was having issues prior to my SAH for sure. I will never be able to get a clear answer on that or many of my questions.

I was given Adderall that summer prior but I did not like the speeding feeling it gave me, so I only took it once. My GP told me that may happen. I experimented with that taking ¼ pill once a week for 4 weeks last month. I felt like it “woke” up a part of my brain that was sleeping still. I only did this as I my neurologist mentioned to me he thought about putting me on Ritalin and I said I tried Adderall last summer. He said that was too strong.

With my fibro my diet has been mostly whole foods, no soda’s etc and I would say I take care of my health in the top 80 % or higher of most people. Exercise has always been hard for me as any repetitive motion seems to do more harm than good. I do water aerobics. I have always been very aware of what I need to do get to work every day and have a pretty decent life the past 15 plus years.

I am journaling my Ritalin use as it has made a giant difference in the past week. I am able to stay awake UNTIL BED TIME, get tasks done, stay on track, cook!!, I will always have the left occipital lobe damage and vision issues but my past week has been truly amazing. My neurologist stated he is treating me for Chronic Fatigue which I am not sure if he believes I have that or he has to say that to prescribe the medication for me. On first day I took the 5mg the and since I cut it in half and took the 2- ½’s about 3 hours apart, until yesterday where I took a whole 5 mg., I was suppose to move up to 10 mg today but I am happy at 5 mg right now. I feel I have to still concern myself with over doing my fibro body right now.

I may also mention I have been on Cymbalta for several years for fibro. I started on many different medications for pain BUT about 5 years ago I developed a problem with balance, stumbling and falling, loss of grip so I was started on Gabapentin ( Neurontin) for nerve pain, then Lyrica and now Cymbalta and that seems to work the best for me.

Sorry so long but I wanted to let you know what is happening with my treatment and how happy I am. I need to have a quality life. I need to be able to work as I have no choice in the matter. Hopefully this new “treatment” will be the answer.

Thanks for giving me a place to talk about my recovery. Love BTG. maryb

[DawnS]

Mary,

I am so happy that your new medication is working for you! It must feel really nice to be able to complete tasks and get a better quality of life. You always amaze me with your upbeat and positive attitude to all the issues you have going on in addition to sah and you truly deserve a break from it all. May the good feelings and clarity long continue!

Dawn x

[goldfish.girl]

Mary, your clarity of thought is shining through in that post! And at the risk of sounding rude (I honestly do not mean to) even your writing in that post is so different to how you usually type regarding missed words & spelling. Something is definitely working with your Ritalin!!

Brilliant news

Michelle xx

P.S I should mention that I notice everyones typos except my own even though I always read my posts before I post them. If I happen to re-read it after it's on a thread THEN I notice all my own mistakes

Edited September 25, 2012 by goldfish.girl
adding a thought

[MaryB]

Thank you Dawn & Michelle,

I wish I could grab your hands and pull you with me! I really do!

Mispelled or missing words & typos??? LOL~ no offense taken, I know the damage to my lobe makes writing, reading and processing an issue and I have NEVER learned the keys on keyboard.......jeezzzzzzz. I type long notes in words so I cheat because I can use a large font!!!!

[sallym25]

Hello all,

Just a wee quickie to say, I asked the doc for ritalin around 10 days ago. He told me he'd have to consult a neurologist first and I am waiting to hear the outcome of that. I get myself excited every time I read this thread and will be really disappointed if it comes back NO.

Will let you all know as soon as I hear from them.

Sally x

[MaryB]

Just a little update on how my Ritalin is going. I have been a busy bee again now that the dose was doubled. I was hesitating to double it so I went really slowly with it. I must say, I am super woman! No, really I am active about 4 day’s week where I get much done. I rest the other 3, cycles just like my fibro but better. I can think better but can be overwhelmed by end of day or if I am doing much reading, computer or close work.

I cannot seem to do any crafts or hobbies because I cannot get my eye hand coordination down or follow any type directions. I need someone to show me. Also seem to still have some problems with hands which may be old lady lack of gripe but I cannot seem to hold the razor to shave my legs if my hands are wet type of issue. I am doing better at work as long as I am not tired or have over done it too much. My processing is much better, as well as my stamina. I would say on a good day I am 75-90% and on a bad day 60-65%.

Today I finished cleaning the garage, transplanted some massive hostas, had a hair appointment, and worked inside some. I tend to clean very well now! I have been on the move today from 9-5 nonstop. I am going to pay for it tomorrow but it is good for my soul to be able to accomplish the things I enjoy.

Maybe someday I can find a way to do some close work and crafts. Lucky for me I have a year of chores to catch up on!

Take good care everyone!

Mary B

[donnamarie]

This is a great thread looking forward to all the updates

[MaryB]

Thanks!! Me too!! LOL:lol:

[MaryB]

So today on my 5mg of Ritalin my boss called me into work to help with a dog surgery that had to have her infected kidney removed. I have not assisted in surgery since awhile before my SAH, stroke, yada yada yada…a little over a year ago.. My fibro made it hard for me to stand that long and hold my hands in position steady for long periods of time before they would go numb. Today I stood with one hand on a huge bad kidney and the other holding the stomach back for almost 3 hours!!!!!!! This is remarkable for me. I am so proud of myself for being able to my job that well again. I cannot express the joy I feel right now.

Yesterday however I had a state government computer mess up that took me an hour and 15 minutes to figure out and I was shot for the rest of the day! I had to come home on my half day and go lay on sofa for the rest all afternoon and evening.

So I still only have so many spoons but mentally it is much more fatiguing to me right now than doing physical work. At my job it is mental and physical.

Thanks all, I must say I did not ever expect this kind of job satisfaction to ever happen again. I do not often get called into surgery much as I am “stuck” doing appointments all day for the past several years unless something spectacular comes in but today was beyond my wildest dreams!

maryB

[Sandi K]

Hi everyone, time for another update on the effects of the amphetamine, Dexadrine.

2 weeks ago my dosage was doubled. It's still a very small dose. 2.5mg first thing in the morning and 2.5 one hour and a half later. For the first week my heart felt racy and my head zoomed. I had so many things 'to do' in my head that it was hard to keep it straight.

A week into it though everything levelled out. About 9 days in I began telling everyone how wonderful I feel!! Happy and capable and dare I say it.... 'Normal'!!!! I still get tired in the afternoon and need some quiet time but I don't have the pain or weirdo neurological symptoms every time I'm tired. I'm so grateful for feeling like this. I haven't felt this good in over 2 years.

I had my follow up appointment with my doctor on Thursday last week. She is astounded that this is working so well. The word she used was 'profound'. We talked about how there aren't any studies (or very many studies or research) on this. I explained that I thought all the money went into heart disease and cancer because they effect more of the population. She explained that the pharmaceutical companies pay for a lot of the research so they pay for studies where they know they can make money - the study proves their medication works. I'm only one person but I'm thinking those drug companies are missing out on a whole demographic by not paying attention to us SAHers!

Next week my dose doubles again to a slow release formula that should give me a longer day.

I must add that the medication has not 'cured' me. I went out to see a comedian last night in a packed arena. Had a great time! But the loud noise, the laughter, and the crowd brought on dizziness last night and a whopper of a headache this morning. It's worth it though.

Sandi K. Xoxox

Edited October 6, 2012 by Sandi K

[goldfish.girl]

Sandi & Mary it is great to read how much these drugs are helping you both to live a more 'normal' life again. It must be such a good feeling

Michelle xx

[MaryB]

You know you still have your ups and downs but it is really wonderful to have something that makes you have some normal days back in your life. I ran into my old GP at that vaccination animal clinic we did today. I told her about being able to asst in surgery and even before SAH I would of had such a hard time being in a "still" position that long etc. with the fibro etc. I told her that stuff was a miracle. She still practices some but sold her practice to my new GP recently. I did not belly bump her or high five her though!

Thanks Michelle!

[MaryB]

Just saying I am still a bit worn out from 6 days ago. I have had a busy week and have been able to get my job and household chores somewhat done. Much better than before ritalin but I am tired and crabby!

[Sandi K]

It's been 2 weeks now since I began the slow release Dexadrine. It's double the dosage of the regular Dexadrine I started on.

The slow release formula is a bit different in its chemical make up and it's supposed to give me a longer day. The expectation is 12 hours.

Unfortunately it doesn't work AT ALL. I may as well not even take it. The doctor suggested giving it a couple of weeks to kick in but it has not kicked in. My fatigue and neurological symptoms are back.

I go back for the follow up appt on Thursday. There are other slow release formulas such as Vyvanse and what Mary is taking- Ritalin. I'm willing to try them but I'm also open to going back to the original which didn't give me many hours but during the time it worked I felt great and was so productive.

Sandi K.

[Karen]

Interesting Sandi and I hope that you eventually find the right drug/combination for you.

Incidentally, I was asked by the Doc to try a slow release beta blocker (same brand though), rather than taking one of the original tabs twice a day that lasted a shorter period of time. The slow release version didn't work for me either and caused quite a few additional side effects which seems strange. The Doc couldn't explain the reason why and I reverted back to taking the old tabs twice a day and the side effects stopped.

xx

[MaryB]

I had to back off my 10 mg of Ritalin as I was doing way too much for my old fibro body and injured brain. I was not resting or napping during day and had put in 2- 45 hour weeks in a row. Neurologist said I can just take 5 mg or even skip a day or two. I was happy to hear that!

I did start out my visit with Neuro saying I did not want the time released kind like Sandi's!

I like and need it to wear off I do not need any 12 hour days. AS wonderful as it is my body revolts! I know my brain still needs rest. So I have went back to 5 mg and on Saturday I did not take any. I had crashed and burned last week and swtiched myself to the lower dose again. I also am taking it first thing when I wake up when I take the higher dose. Today I took 10 mg as I need to clean the house as I have not doen that for weeks and we are going out of town soon.

Maryb

[MaryB]

Alrighty, I stopped my Ritalin 3 or 4 days ago. I was not sleeping at night and the neurologist wanted to add Elavil on top of all my other meds at bedtime but I knew it was the ritalin. Got my sleep pattern back now and I am back to somber tired Mary.

I also had a really bad balance issue while on "holiday" or "vacation". I am not sure if this is new or not. A week or so before we left I had to blow leaves off side walk & yard as I would not walk as I felt I was going to fall. Not dizzy just footing problem and vision. When we parked in parking garage at airport I always get a weird feeling anyway but this was worse. Than the "people mover", colored lights flashing over my head or wherever people walked, escalators, being on a non main floor and the elevator.

Today I am starting back on beginning dose of 1/2 of a 5 mg. when I wake up. Hope MY new plan works.

maryb

[Sandi K]

This article offers some interesting commentary on 'smart drugs'. It was posted on the Best Brain Possible's Facebook page. http://www.thebestbrainpossible.com/are-smart-drugs-smart

Sandi K.

[MaryB]

That is a very interesting article Sandi. I stopped my lowest dose of Ritalin today as I am either being bothered being agitated or annoyed with everyone, I am just mean person or everyone really is that stupid around me. Think it is me & the drug.

Today I came home from work at noon- exhausted, cannot wait to hit the sofa. I hope it is not a 4 hour nap today. I would like to find somewhere in the middle please.

I swear that the Ritalin in the beginning turned on a switch in my brain for processing that was lost after SAH & Stroke. It was like day 2 and I could just make a meal, make a pot of chili, write a grocery list or plan an event. Without it I was like I cannot do anything that takes thought processing. I was a fast paced person that normally did more in a day than most in a week. I was great at prioritizing and organizing in my fast pace job at the Veterinary Clinic. I feel Ritalin gave that back to me. I waitressed for many years and was able to “multi task” even though people say that is not true nowadays but if you ever had waitressed and was good at it you often have several balls in the air at the same time. I lost all that and now have regained it. I wonder if after a week without Ritalin it will leave me again??

I will stand and say it did wake up parts of my brain that were not being used at all.

Maryb

[Teechur]

That is fascinating Mary! I'm very thankful that I seem to have regained all of my cognitive abilities. When the headaches really hurt I am not able to think on my feet as fast, but I think that's more the pain because when I try to force it, it hurts worse.

Have you tried the Elavil (Amitryptiline)? My neuro put me on that for my headaches and honestly, I don't think it works for me. I am going to see a new headache specialist and hopefully she will have some answers for me. Until Dec 6, though, I'm still on the Elavil. BTW, I didn't notice it did anything for my behavior, either. I think it was used as an anti-d but wasn't the most effective. You do have to be careful with it. When my doctor didn't call in my new dosage, I ran out and had only half my dose left and had withdrawals. Thank goodness I was able to get my pills that day. If you go off too fast you can have seizures. I was really scared about that! I teach and it would FREAK my kids out and they have already been through enough. They need me to be healthy and sassy!

[Sandi K]

H everyone! Time for an update here.

I think it's been about a month since I went back to the regular Dexedrine tablets. The slow-release formula didn't work at all. Isn't it interesting that Karen found the same thing with a different medication. It was as if I hadn't taken the medication. All the fatigue and neurological symptoms came back. I had no motivation and was too tired to get anything done. My head was in a fog.

Immediately upon returning to the regular tablets there was a positive difference. I take a very low dosage but its enough to zoom in on that part of my brain that needs a boost.

When I first get up in the morning I take 2.5mg. It 'peaks' about a half hour later and lasts approximately an hour and a half. The fog clears, my sinuses clear, suddenly I become organized with my thoughts, I've got a 'normal' amount of energy and I can focus.

Some days that's all I take. It depends what I've got scheduled in my day and how long my day needs to be.

The most I've taken is 2.5mg first thing. An hour and a half later 5mg. And hour and a half after that 2.5mg. That gave me a good long day but it was a day of sight seeing on vacation so I've not had a chance to put it to the real test of being at work or something like that where my brain is required to be productive and focused.

No side effects--fingers crossed it stays that way!!

Sandi K.