ADHD medication

[rampmama]

Well I am almost 3 years post SAH and today was the first time I have got to go to the Brain Injury clinic in our city. Quite and experience. Found out lots from the doc. And I was prescribed Ritalin. Has anyone else had experience with Ritalin?

Linda

[michelle C]

Hi Linda,

I have not had experience myself of ritalin but the school i worked at had a boy who used to take Ritalin everyday after lunch because he had ADHD- Attention deficit hyperactive discorder. He was quite fidgety and restless but otherwise fine.

Can i ask did they explain why they gave it to you are you restless or anxious? Obvious we are not medical on here.

Love luck and laughter

Michelle xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[Karen]

Hi Linda,

I don't think that anybody on here, has mentioned being prescribed Ritalin. Like Michelle, I've only known it be prescribed for ADHD. It would be interesting to know the reason as to why you're being prescribed it?

[Cal]

Hi Linda,

Jim was prescribed Ritalin. The doctor said it was used to stimulate his brain.

He was on it for awhile but felt much better not taking it. He said it made him racy.

What are the symptoms that you have that the doctor would subscibe it to you? I am curious as to why he would give it to you after 3 years. But then again I am not a doctor

Cal

XXXX

[rampmama]

Ok I have to say I love Ritalin. My head feels clear for the first time since my Anni.

I went to the doc explaining that I couldn't get motivated to do anything. After a few minutes, he decided it was a focus issue. I am easily distracted now and have a hard time filtering out things like noise, etc.

Since my anni, my head has felt like I have been on cold medications the whole time. Fuzzy. Today I popped the Ritalin and I felt clear. Nice first step. I can't wait for the med to take its full effect in about a week. Here is what I found on the topic.

http://goliath.ecnext.com/coms2/gi_0199-869092/Ritalin-revisited-does-it-really.html

Linda

[Sandi K]

I'm not sure if this is the right place to post this thread. I had a look at the 'advice' area but saw that it's meant for tips on natural things. Dear moderators, if this is in the wrong place I'm sorry for causing work.

A year ago, maybe a bit longer, a Canadian BTG member sent me a pm suggesting I speak with my doctor about ADHD meds. She explained it was just about the best thing to happen for her recovery. It was too early in my recovery for that. I needed more time to see if my brain would bounce back on its own.

I'm almost at 2 years post-SAH now (21 months) and my GP suggested trying ADHD medication to combat my fatigue and help me focus for longer periods of time without bringing on the neurological symptoms such as blurry vision, headache, sore arms and legs, hoarse voice, dizzyness and so on.

GP explained there are 2 paths to ADHD meds. Ritalin and Amphetamines. Sounds scary. She explained there is no science to back up the choice to use these meds for brain injury and it would be trial and error to see if it works for me.

She has prescribed a very low dosage of Dexedrine which is an amphetamine. Today will be day 3. The dosage is so low that the pill only lasts 4-5 hours. During that time so far, I feel energetic! What a strange but wonderful feeling! Suddenly I'm able to organize and get several tasks from my "to do" list done. I feel motivated and capable.

When it wears off I go back to feeling how I normally do post-SAH, no worse. I wonder if that will continue, I wonder if I would feel more fatigued because I have energy to get more done? We will see, it's only day 3.

Sandi K.

[amexdm]

Hello,

Thanks for sharing Sandi! I am right with you. I am 13 months and didn't want to try anny amphetamine like products as I am hoping to heal naturally. We'll see. But I am about ready to try something. Maybe Adderall, Ritalin, Dexderine anything. My brother takes some kind of stimulant and he had a brain cyst. He said it works. My doc said Wellbutrin which is anti-d with so called "pep".

I thought I was the only one with hoarse voice. Thanks for sharing. At least your doc recognizes your physical symptoms. Mine and others have not. So frustrating.

Please let us know how it's going. I find it very interesting that we may be pioneers of future SAH treatment or health and while I know Karen we are not supposed to reccomend meds there are no studies or not much treatment history for SAH that American doctors seem to know of.

David

[Karen]

This is an interesting thread started by Sandi and something that has been mentioned before in a previous thread. http://www.behindthegray.net/vbulletin/showthread.php?5640-Ritalin-and-brain-injury&highlight=ritalin

However -

Just to clarify the rules on BTG before there are any hiccups on this thread - This is a support and recovery advice forum. There are no medical professionals on this website who can advise others to take medication that isn't prescribed by their own Doctor.

You can talk about your own experiences when using a prescribed drug, but we do not allow members to recommend any medication that may not be suitable for others for obvious reasons and which therefore takes this website into a grey area. If that does become the case, posts will be deleted or ultimately this thread will be closed, so please be sensible and responsible with your replies.

ADHD is an abbreviation for Attention Deficit Hyperactivity Disorder

http://en.wikipedia.org/wiki/Attention_deficit_hyperactivity_disorder

[goldfish.girl]

As you know Sandi, I am very interested in how this goes.

I spoke to the neuro psychologist on Tuesday & told her that someone I know was trying this. Her response was very much what your doctor said:

'She explained there is no science to back up the choice to use these meds for brain injury'. I think she also mentioned something about no conclusive studies but my memory is never reliable so I can't quote exactly what I was told. I'm also not sure if it is something I could be prescribed in the UK, for this reason but it would not be her who would prescribe it anyway (I don't think? I think it would have to be my GP?)

However, I am following your progress Sandi to help me decide if it's an avenue I could attempt to try. I did google the side effects of long term use of these type of drugs and to be honest I didn't feel comfortable with what I read.

Good luck Sandi & please keep us updated.

Michelle xx

[MaryB]

I was prescribed ADHD medication by my GP last summer before my SAH for extreme fatigue. As I have started prior to this post before I had my SAH and strokes etc..... I was so ill and exhausted I thought I would fall asleep standing up. Very simialr to after SAH. I was not feeling well at all. I did not like it in full dose at that time. Last month when I saw my neurologist he said he thought the problems with fatigue may be due to CFS ( on top of my fibro, SAh, stroke, brain tumor etc.) and he was going to put me on a trial of Ritalin. Mind you now I am only with it for about the first 3 to 4 hours of each day before I need to lay down.

Since I had my other ADHD medication that my GP gave me but my neuro said was too stong, I decided to tried 1/4 dose here and there the past month and I must say I feel like my old self. But I am concerned with long term is this masking the extreme fatigue and when it catches up with me will I ever be able to get out of bed etc????

I did however enjoy having a clear mind with energy, being able to focus was great for a change. I still have my concerns. I did not take it on my days I work as I am still worried it is "fake feeling of energy and having a clear mind". Sort of like after a few drinks people feel great!!!!

I am glad I tried it again before my next appointment because it has given me MORE questions to ask now.

maryb ~Delete me if I said something wrong ~

[Sandi K]

Karen, thank you for providing the link to the previous thread. That's who messaged me a year ago. and thank you for pointing out the rules so we don't forget.

I want to clarify my intent for this thread for anyone reading it. I'm not recommending anything. There are all sorts of reasons a doctor wouldn't prescribe these meds to a patient. One example is amphetamines don't mix well with high blood pressure. Another is they can be habit forming. It really is necessary to follow your doctor's advice and work with your doctor when you try anything new.

My intent is only to share my experience. Partly so I can re-read later to follow my progress, partly in hopes that if medical types are peeking in they will see what's happening with SAH recovery around the world, and partly so everyone else is aware of all avenues of help available (remembering that we are all individuals and shouldn't do anything without our doctor).

I have similar concerns as Mary and GG. I'm stepping tentatively into this and I see my doctor again in 2 weeks.

Sandi K.

[kpaggett]

I had terrible fatigue!!! and now I don't. Night and day! But, if I had to try and go to work or do anything on a schedule, I wouldn't have been able to do it with the fatigue level I had.

It must be devastating to still have this issue! It is telling that your doctor takes your complaints seriously. I remember the last time I went in feeling terrible vertigo, the doc. kept asking me to hold my hands out, close my eyes and tell me WHEN I felt dizzy. I kept saying, 'I feel dizzy all the time.' but she never really understood for some reason. I think someone who hasn't experienced it only can relate to getting up too fast or the like. Fatigue is like that too. It consumes your whole life. I hope you find a solution that works. It sounds like your doctor is at least willing to embark on a journey with you. Good Luck.

~Kris

[MaryB]

Agree Kris, It is not like normal being tired. It is like you have to sleep. I can't hol dmy body upright any longer! I can recall once -( probably when my GP gave me the ADHD medication!) having to actually lay down on that little bed while waiting for the GP to come into the room.

[Sandi K]

Karen thank you for merging the two threads. It will be easier for people searching for info to have it all in one place.

Today will be day 4.

So far it's been like this:

Day 1 I felt 'high'. I felt GREAT! Which is probably not the best thing really. I mean, the idea is not to feel drugged up I would think. The world was a good place and everything 'red' in color popped out at me. I felt joy, energy, and danced around the kitchen listening to music. All was grand. Lots of energy and motivated.

Day 2 the reds didn't pop out and the euphoria wasn't there. It was more normal. I had rehab for 2 hours which means 2 hours of concentrating so maybe that had something to do with it. I still found myself distracted though. I had to turn off the dryer so the noise wouldn't distract me. My attention was pulled away easily by a hummingbird at the window and my dog walking into the room. I did however feel energetic and able to organize.

Day 3 was the best so far. I was able get through a list of stuff that would have taken me days before. I also spent a full 1.5 hours fully concentrating on a sit down task which is amazing. I didn't feel 'high', just more energy.

After approximately 4 or 5 hours I feel the normal tiredness I've been feeling in my recovery. No extra fatigue from the extra things I've been doing with the 'synthetic' energy.

Sandi K.

[Sandi K]

It's week 2 now.

Interestingly I noticed yesterday that my legs hurt in the morning. My legs always hurt when I'm tired, it's one of the 'weirdo' neurological symptoms I get when I'm fatigued. I took the ADHD med and as it was kicking in the leg pain went away. Later in the day when it was wearing off the leg pain returned.

I read online that this med was initially developed as a decongestant. I think it works by removing the swelling in blood vessels. Sorry, I'm struggling for words here. The opposite of inflammation is what Im trying to say. When your vessels are swollen you feel stuffed up. When the swelling goes down your sinuses clear. That happens to me every time I take the pill. My sinuses clear.

I'm wondering if the leg pain is also caused from swollen blood vessels? Will ask my GP next week.

I definitely notice that I'm much more energetic and focused while the pills are in effect. During that 4 or 5 hours in the day I'm getting so much more done and feeling good. I realize that it's been over 2 years since I felt this way because I wasn't feeling well leading up to the brain bleed. During that 4 hours a day my head is clear and I'm motivated.

It's still early days but so far so good.

Sandi K.

[Sandi K]

Because I'm taking such a low dose to start I have to cut the pill in half with a knife. Even though there is a line running along the top of the pill it doesn't always break into nice even halves. Yesterday I took the smaller 'half' of a pill. It only lasted 3 hours and I was hit with a bit more than the usual fatigue symptoms afterward. Heavy legs and arms, tight head, and absolutely no motivation to do anything. I couldn't muster up the energy to do anything besides lie on the lounger outside in the sun.

I don't think I was more tired than I would have been had I not started the meds. Without the meds I was hit with unpredictable amounts of fatigue at times. It's hard to know if I would have felt this way with and without the meds for sure.

Today I woke up feeling ok, took the bigger 'half' and now have none of the fatigue symptoms.

Sandi K.

[amexdm]

Hi Sandi,

Thanks so much for providing the updates. I will be following your progress. It sounds as if this medication is helping some. I talked to my brother and he is taking the same thing. He had a brain cyst 18 years ago.

I spoke to my psychologist last week and asked him about it. He asked if I was sensitive to caffeine and I said yes. He said he didnt think it was for me. I am going to wait and see and also ask my new neuro that I see on Oct 2nd.

I have a very slow metabolism and I think that any speed type drug might be a rather shock to my system. I know they use a small dose.

I think our legs get tired when we are fatigued. Could be swollen blood vessels. So whats the cure? They say when you are tired the first thing to go is the legs. For example, a boxer if his legs get tired, he will drop his guard and get hit.

Do you think Sandy that this medication will help you in any return to work or maybe too early to tell?

Thanks,

David

[Sandi K]

I am hopeful that the meds will help get me back to work. I feel a lot like the old me on them, similar energy level and clarity of mind. We don't have the dosage right yet though and because we need to adjust it there may be side effects so it will take some time. But I'm feeling positive about it so far.

I have questions for my GP such as what long term use may look like considering this drug is habit forming. I'm also wondering if it's expected I would be on this for a short term or long term and how do we know when to try weaning me off down the road? I want to know more about the swollen blood vessels too. If that's the problem then maybe there is something else I can take?

I was shopping on Friday and while the med was active I was like my old self. Energy to try on clothes and move through stores. When the pill wore off my head went tight instantly, the crowds bothered me, the lights were annoying, and I just wanted to go to bed. So we called it quits and I napped for a couple of hours. That type of on/off energy (almost like turning in and off a light switch) wouldn't work well for return to work.

Sandi K.

[kpaggett]

Very interesting. Although, taking any stimulant can induce anyone to feel 'Great' and they can be addicting so they are not for everyone. The crash effect can be terrible and end up worse than the original fatigue feeling...I'm sure with a Doctor's help, you can find the right dose and wean off of it when you two think best. Good-luck.

~Kris

[MaryB]

Kris,

Wean off? What you talking about? LOL

MaryB

[Sandi K]

Week 3 is going well.

I took a proper 1/2 sized pill yesterday and was a busy bee for 5 hours. It's so easy to remember my chores list and easy to organize the tasks in order to get everything done. I know I have a window of time so I work within that time frame and zoom around. It feels really good to feel the energy and be so productive!

When it wears off that's it. Back to feeling dragged down, heavy, and tired. Cloudy brain.

My follow up appt with doctor was changed for Sept 11 to the 20th. So next week I think we will upping the dosage.

Sandi K.

[Karen]

Hi Sandi,

Thanks for your update and it sounds as though things are going well.

As you know, I'm pretty interested in hearing as to how you're getting on with taking this medication and what effects that you may have experienced or not, over a longer period of time.

Can I ask you as to whether you've had any recent contact/update with Linda (Rampmama) since she initially contacted you? I'm just kind of sounding myself out aloud, as to where I might go with this information.

I know that the fatigue and loss of concentration/motivation is a huge problem post SAH for many of us and I'm wondering if there's been any research/medical papers into ADHD med's post SAH? If you've seen any, then feel free to PM me with it. I shall have a search.

Thanks Sandi for your update.

xx

[goldfish.girl]

Hi Sandi,

I love hearing how this is going for you. It must be fantastic to have that 5 hours of being how you used to be? It sounds like a dream come true to me (although a pill that just made everything better full stop would be even better )

I also love the thought of something that works but am not brave enough to try it myself but I take 2 different blood pressure medications so I'm not sure I'd even be allowed to try it?? Thank you very much for keeping us updated on your progress. And long may the few great hours each day continue!

Michelle xx

[MaryB]

Karen, I am going to my neurologist on Tuesday the 18th. and I believe he will start me on my dose as well. PM or FB me any questions I can ask for you.

It is like heaven to think clearly- geez, just to organize your THOUGHTS or chore list etc. Hells bells for me to make a chore list! I cannot be motivated to do that most days. I took a 1/4 pf my old Adderall pill today at noon when I am usually ready to hit the wall and it did not help me too much. I wondered how it woud work when I was already tired. I will let my Neuro man know I took a few of my prescription I was given lasty year but broke the pills in 1/4's. Friday is a long busy work day for me and I was not as tired and ready to sleep but that is the only difference is I am not on the sofa right now I am typing you about it. Normally I am already asleep.

Maryb

[sallym25]

Hello people,

I'm onto this one. One comment on this thread has really stuck out for me. Someone said "I love Ritalin". I have made an appointment for Tuesday morning to ask if I can try it. In truth, it scares me, but the though of brain clarity, for even a temporary period, has me really excited. Can't wait to try it now. I will of course keep you all updated on my progress.

Love to all,

Sally. xxxxx