The single most important thing you can do is to take control of your own illness. Do not allow Lariam to control you. Then try some of these tips from other sufferers.
Coping strategies from Felicia
Felicia posted her coping strategies to the Lariam group at Yahoo.com in May 2009.
I wanted to reply to the guy who posted about having been off Lariam for three months and is worrying about his feelings towards his wife and family. We have all gone through similar crap recovering from Lariam. But here is my advice in some clear cut steps:
- Tell yourself and everyone you talk to about Lariam that you are lucky. Lucky because you aren’t doing that badly. Just read some of the back posts in this group and you can see how miserable Lariam can make your life. Your liver hasn’t failed, you aren’t in a small padded cell, you haven’t killed anyone or yourself. If you take for granted the good things you still have, you’ll just be miserable all the time.
- Tell yourself and everyone that you are going to take a long time to recover, if you ever do. Set your expectations low. Really low. Chances are you will recover, as you sound like you are doing really well for 3 months out. However, you could be like I am and be sick to some degree for the rest of your life. It is way easier to set your expectations low than to hope to recover tomorrow and each day be devastated that you aren’t well. Also, this will help you manage the expectations of your family.
- Look at the new head space you are in and try to analyze it rationally. Your muted feelings towards your family sound like classic signs of depression to me. A doctor may be able to help you with this. This doesn’t mean that you won’t freak out because of all these new irrational feelings, but if you look at them as being artifacts of brain trauma rather than your real feelings, it is slightly easier to deal with them.
- Ditch the anger. You know what being angry at Roche gets you? Worked up and absolutely nothing else. You know what the last thing in the entire world you need is? Getting worked up and angry. I have been (like so many others) treated really badly by doctors since I took Lariam, and I have to work to keep from spending every second of every day freaking out about it. So, I wear headphones a lot and listen to things to distract me and keep me from obsessing.
- Communicate. Remember “for better or for worse”? Well, welcome to the “for worse”. You and your family are a team. You need to work with them to get through this. Leaving them out will cause them to feel helpless, and being helpless is the shittiest feeling of all – as Lariam sufferers know well. Have them help you figure out what sets you off and how to avoid those situations. Have them help you monitor your moods. Ask for help making sure that you stay away from foods and drinks, like caffeine or sugar, that will make you more anxious. And most importantly, if someone tries to cheer you up, make a Herculean effort to at least smile.
- Fix everything else. Every unhealthy, bad habit that you could get away with before may be making you worse. I don’t get to stay up late or eat chocolate. I don’t drink, take cough medicine or drink anything with artificial sweeteners. My hormone levels were a bit off before Lariam, now that imbalance makes me crazy. I don’t eat enough protein, and now that makes me exhausted all the time. I used to get too involved with people who were unstable or who had serious personal problems. No longer, ’cause they add stress to my life. I used to always try to do a zillion things at once – now I have a list of easily doable things that I try to get done each day and I avoid time pressure like the plague.
- Choose to be calm and happy. There are times when I can feel an anxiety attack coming on, and for a moment, I have the ability to choose not to freak out. It isn’t easy, but it is possible. If I’m fussy and negative, it is possible for me to pull myself out of that at least enough to be not miserable. This isn’t necessarily possible for everyone, but I believe that most people can at least make an effort to not revel in their misery. Don’t beat yourself up for a mistake or failure. Show compassion to yourself. Find ways to treat yourself and take special care of your wounded mind.
This is my advice. Our lives aren’t easy, but honestly no one’s life is that easy. Everyone suffers at one time or another. You can get through this. –Felicia
Proven coping tips from an English sufferer
- Be realistic about your present physical and mental capabilities and adjust your life accordingly. Do not push yourself, whether you are working or at home ill. If you find the limits of your capabilities and try to live within them, you will feel more in control.
- Develop a “recovery plan” and keep track of your progress. If you don’t have a plan, you will not notice slow but consistent improvement.
- Don’t worry if your normal sleep pattern is disturbed. Take naps when you can. If you are working and sleeplessness is a severe problem, sleeping pills can help but just relaxing in bed and not worrying about sleeping will also help.
- If sleep is a problem, try this relaxation technique. Schedule 30 minutes of relaxation and “daydreaming” every day. Lie or sit comfortably where you will not be disturbed. Mentally and physically relax your body, starting at your toes and working up to your head. Once you are relaxed, try daydreaming. Picture a place where you would like to be and imagine walking around and doing things that make you feel relaxed and happy. Visualize your body repairing itself sweeping away your symptoms and fixing the Lariam damage.
- If you have panic attacks or frightening images, try to concentrate on your breathing make it as smooth and deep as possible, and slowly count your breaths. Then do something simple and concentrate on it: drink a glass of water, eat a piece of fruit, etc. Continue to concentrate and be aware of your breathing while you carry out a simple physical task.
- If you are able to work, do not try to carry on as normal. Lighten your workload as much as you can and severely limit your social life and activities. With less physical strain, your body will have more energy available to repair itself.
- Cut down on stimulants, caffeine drinks, smoking, alcohol etc.
- Try and eat three good meals a day (fresh food, not convenience or fast food!). If this is not possible, snack regularly again fresh food, not snack foods or candy many sufferers report snacking every two/three hours helps alleviate their symptoms.
- Pay special attention to the food you eat. Try to eat regularly and eat good fresh food. If you suffer from gastrointestinal problems, seek advice from a nutritionist. You may need to change your diet and eliminate or add some foods.
- If you feel anxious when you are alone, make sure you have someone you can telephone. To make sure someone is available at all time, perhaps you can set up a schedule with friends and relatives or they could do this for you. Before I was ill I travelled and worked in Africa on my own; now I am relieved to know that anytime my panic attacks get unbearable or I feel physically unwell, there is someone I can call.
- Depression can be helped with antidepressants but seek your doctor’s advice. If you are not working, try to have a routine (getting up at the same time each day, work out your level of activity, have time for rest and relaxation, go to bed at the same time).
- Try a new activity. Previously I was a go-get-em career woman; now I enjoy tackling a complicated knitting pattern!
- Find someone you can talk about your feelings with and do not be afraid to ask for help.
- Beware the TV all day trap!
- Ringing in the ears can be helped by a low background noise; I play quiet relaxation type music most of the day.
- If you decide to take vitamins or minerals, buy a good brand and do not take megadoses. Overdosing on one or more vitamins or minerals can upset the balance of the other vitamins and minerals.
Some ways to get through each day
- One sufferer recalled a story with the moral, “Attitude is everything.” “It’s the ONE thing that I can control. For me, it has been worth the effort.”
- “I can’t help but think that the brain needs to be maintained in a positive and optimistic way if it is going to heal properly.”
- Other sufferers channel their energy into something else to block out symptoms. They feel that the more you dwell on your symptoms, the worse they seem to get.
- Find a LOCAL support groups for help with specific symptoms that bother you. For example, the Vestibular Disorders Association (VEDA, www.veda.org ) has chapters in many places for people coping with dizziness, vertigo, and other balance-related problems. There are similar organizations for people dealing with depression, anxiety, etc.
- Check for books on dealing with symptoms. Some sufferers find information in books easier to deal with than the same information online.
Set up an energy bank
- This is a simple points scoring system which one of my docs taught me. It sounds simple but it does work. Break up the day into morning, afternoon and evening. Give yourself 0 points for doing nothing, half a point for doing a little bit and a whole point for doing something that you know you find/found tiring. Exactly how you decide to grade yourself will depend on the severity of symptoms and their severity and impact on your daily life but so long as you are consistent, the system will work. For the first few weeks, keep a tally. Figure out the weekly average of how many “energy points” you expend. In future weeks, do NOT go over this number.
- Begin to plan ahead for “spending” energy. If you want to do something on a Saturday afternoon that you know will be tiring, then you must save up enough points beforehand. Only allow yourself to do it if you have enough points saved in your “energy bank.”
- As the weeks go on, if you start to feel bad, then you reduce the number of energy points you can spend. If you are feeling good, then you can GRADUALLY increase them.
- As time goes on, you get a much better feeling for what you can and can’t do on a cumulative basis and it also means that by properly managing your energy reserves in advance of doing something, you reduce the risk of overdoing things and hence relapsing afterwards.
How a doctor got over a serious Lariam reaction
- “I don’t claim any special knowledge, but I’ll share what little I know. I had severe neurotoxic side effects. I almost quit my practice. I nearly gave up hope. Fortunately I’m fully recovered.”
- I consulted my physician friends
- I’m healthy otherwise so I abided by simple healthy living things, such as daily exercise, wholesome eating, etc.
- I continued my high protein shakes that I was previously taking simply for good nutrition
- I saw a psychologist
- Had a lot of support from family and friends.
- Continued basic vitamin and mineral support
- Meditated and did yoga
Kristin’s personal steps
- Accept what you have. It’s like having diabetes, hypoglycemia, or allergies, etc. Accepting your adverse reaction to Lariam makes it easier to deal with.
- Don’t drink.
- Try meditation, yoga, homeopathy, rolfing (a special type of massage), or acupuncture. These did wonders for me.
- Take extra care of yourself and don’t feel guilty about it. Take days off work if you have to. Just do whatever you can to make yourself feel better.
- When I have ringing in the ear or vertigo or “brain fog,” I let it go and accept it. Then I go to a movie or take a walk and try forget my problem.
Get outside, take a hike, ride a bike, or walk through the park.
- Talk to your friends or family. They can’t give advice but they can listen!
- If you don’t have friends or family who want to listen, then get a therapist. Find someone that will help you get stronger.
- That which doesn’t kill us makes us stronger!
Doreen’s personal steps
- Got follow-up assistance. A psychiatrist helped get me off of the medications and determined I was not manic/depressive or whatever else they wanted to call it. (I had severe psychotic reactions, was hospitalized 10 days and put on 5 to 8 different psychotropic drugs.)
- Got continued counseling with a therapist.
- Did Body Work and Massage.
- Had friends to talk to who understood this mess (also the Lariam Action folks).
- Did Art Therapy via drawing, writing, dance, music.
Did detox stuff via vitamins, herbs. Consult with someone who knows this stuff.
- Took time off of work for 6 weeks sick leave.
- Don’t worry. You are not crazy. It is the drug. Remember that!
- Be gentle with yourself. Eat well, rest well. Go very slowly. Spend time with someone who will understand.
If it’s not working, start at the top and go through the list again!
A Word to Friends and Relatives