I have been feeling that my Orthostatic Intolerance (OI) is getting worse. It is only the feeling and I cannot prove or compare my condition with earlier days. Since combination of symptoms and severity of ME/CFS is constantly changing (within the certain range), I cannot pin point anything triggers flare ups of my condition.
I know very well that there is not much my doctor can do, although he is open minded and willing to try anything. If he believes something would available and helpful for me, he wouldn’t hesitate to give it to me. It is simple that there is no effective treatment protocol for ME/CFS. I am grateful that he sees me every fortnightly and ready to check/investigate/discuss about the symptom(s) I maybe having at the time.
Even with such support, when flare ups gets really bad and seems to be going forever, I cannot help myself for wanting. Wanting desperately for something to make this condition go away. I just WANT something, even it is just tiny relief, or tiny information that might give me hope that this condition will go away sooner than later.
My mind started to drift into this theory. If there is something to relief my OI symptom, I might gain some normality back in my life…
In my case, OI is chronic. And OI itself is causing severe disability in my life. I can only sit upright up to 30 minutes on my good day. OI can be one of several conditions that contributing significant fatigue. Sleep problem, heat intolerance, exercise intolerance, post exertional malaise, palpitations and breathing difficulty are probably related to OI. The cause of my OI or Dysautonomia can be ME/CFS…
OI is common among MEites and they share similar symptoms and condition. (Some research says 75% and other says 95%…) However, I cannot explain how ME/CFS and OI are interrelating and which symptom is exactly OI or ME/CFS. I just make an educated guess each time it happens.
In Australia, some people can relate OI to the retirement of Greg Page, the Yellow Wiggle. However, from my experience, hardly anybody knows how it affects and shows in everyday life. If you walk into a public place for an appointment, and ask for a place to sit down or lie down, you are probably greeted by an annoyed face. Unless you insist and explain for the reasons, nobody is willing to help. Even with the persistence, quite often you don’t get a place to lie down and end up showing acute OI symptoms in front of strangers. These days, I do not keep standing up anymore, I use wheelchair as I cannot walk much, and I just avoid making appointments as much as possible.
It seems like I can delay the episode from happening when I’m talking with someone or driving a car. Slightly swinging the body and/or leaning forward are my desperate attempt to delay the episode. But this has to be negotiated by my very low energy reserve. Moving around or talking may end up lying on the floor from exhaustion… I tried to sit on the floor spreading my legs out, leaning my head onto the chair, when there was nobody around. It was not easy to get up from the position, though.
Some of the typical acute OI symptoms based on my experience;
As you can see, these are not fun symptoms to display in front of strangers. Once I get to lie down completely flat and these symptoms start to recede, Myocolonus or jerking starts. Sometimes the Myocolonus is so violent and it looks like I’m having a seizure. I cannot blame people get scared of me when they see me like this.
When I had the acute episode on the way to hospital for MRI while sitting in Ambulance, it reached to the point that I really WANT to do something about it. If I cannot control ME/CFS, I should be able to control OI. In my mind, I knew very well that there is nothing to improve this condition except for prevention. But my emotion was telling me that there MUST be something. At least, searching for the answer was my coping strategy.
Treating OI is very difficult. There are some medications, but they seem to be very strong. As my body often react negatively with medications, I would like to avoid any of them especially where bad side effects are evident.
First thing we can try to improve OI is to increase fluid and salt intake. My doctor prescribes me with Repalyte, which is electrolytes replacement. The primary use of Repalyte is rehydration purpose. It creates an ideal pH balance so that our body can absorb liquid quicker than just drinking water. It also benefits me as a MEite who tend to have low electrolytes in the system. Electrolytes, such as sodium (salt), potassium, calcium, magnesium, chloride, and bicarbonate, are important for our muscles and cell function. Lack of electrolytes or imbalance of electrolytes causes symptoms similar to neurological condition. The common electrolytes replacement we know is sports drink.
In the US, it seems some ME/CFS clinician use IV Saline as treatment of OI in people with ME/CFS. As I heard that some patients show significantly improvement, I’ve been curious about the treatment. When I mention about this treatment, my doctor explained that he wouldn’t see the benefit of trying it to me as the saline would just pushed out from the body as urine as I have normal blood pressure. However, if I could show him evidence or result based article, he would consider the treatment. After I mentioned it to him, I realised the treatment could be very expensive. So I didn’t do the follow up.
Now that my frustration was accumulating, I printed out two articles and brought them with me to the appointment.
The first one was a chapter of the Dizziness from A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. I crossed the title Dizziness and wrote Orthostatic Intolerance on it. The reason for showing him this article was to make sure our understandings of OI in ME/CFS are the same. OI in ME/CFS seems to be different from someone just have OI itself.
The second one was an article by Dr David S Bell about his trial of IV Saline on his patients.
When I give some information to a doctor, I become extremely nervous. From my previous experience, this could be the end of good doctor/patient partnership. I was relieved to see Dr TL didn’t upset, but showed his understanding of me giving him these articles.
At the next appointment, I was even more surprised when he asked me if I heard any follow up trial by Dr David Bell as his article was written quite some time ago. Dr TL didn’t have enough time to finish reading all of the articles I gave. It was okay by me as I know he is a very busy GP and ME/CFS is not the only illness/condition he has to focus on.
I explained to him my understanding was that it is difficult to have proper clinical trial for IV Saline, and the best we could know is just how many patients feel better from using the IV Saline. While new medicine is developed, they have the trial to administer the real medicine and placebo to controlled group of people. Placebo is often just a sugar pill. When you want to try IV Saline the same method, there is nothing to act as placebo. Usually IV Saline is a liquid form of sugar pill. So we don’t know if IV Saline is actually effective or it is just another woo.
Dr TL also asked how long it takes to administer the IV. I believed they took 4 hours for 1 litre saline. But I am guessing it needs to be longer or slower infusion if a patient feels sick.
Obviously it is not a typical treatment for ME/CFS here in Australia. And Dr TL will need to do homework if he is interested in.
I told my concern about the cost, and he said it would be about $120 per infusion. For a MEite to have the best effect from the IV treatment, they need to have the infusion every two or three days. My weekly spending money from Disability Support Pension after paying rent is about $60. As you can see, there is no way I can afford the treatment. Before I know if this treatment is effective or not, my hope for the treatment was ended.
In a meantime, I still have Repalyte. I don’t feel “lift” from taking it. But I feel it is somehow helping me from getting sever OI episodes. I also felt having sports drink after exertion/activity may be able to keep the severity of payback little less. There was once, I didn’t take Repalyte one day after outing. It wasn’t intentional. I don’t know why but it just slept away from my daily routine. I was taking lots of fluid, though. Then, my payback became much severe than usual. With my condition, it is almost impossible to identify what causes symptom to go severe. But I feel it was the lack of electrolyte replacement. So even it doesn’t make me feel super, I will keep taking it.
Dr TL agreed to increase Repalyte from two sachets to three a day. He gets authorised prescription for me. This means I can have 600 ml of electrolyte replacement every day for $5/month. It may not give the same effect as IV, but I’m happy with it.
If you have some information about treating OI, I would like to hear from you.
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Some OI information available on web.