LindsayLast week I had an appointment with my POTS doctor. Many dysautonomiacs see a neurologist for help managing their condition, as dysautonomia is a dysfunction of the autonomic nervous system. However, when I was first diagnosed I was referred to a cardiologist who has now proven to be the best doctor I have ever had. He is gaining a reputation as a dysautonomia specialist on the west coast, so I’m not about to trade him in!
I have been experiencing even more fatigue and migraines than normal, so I decided it was time to talk to the doc again. And talk, did we ever. I was in his office for over an hour and a half. I felt sorry for the person who had the appointment after mine.
One of the things we discussed was myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) here in the U.S. Like dysautonomia, much about ME/CFS is still unknown. ME/CFS and dysautonomia share many symptoms, including:
- fatigue
- headaches
- concentration problems
- muscle weakness
- joint pain
- poor circulation
- digestive issues
- Sensitivities (to light, touch, food, chemicals, perfume, paint etc.)
An ME/CFS diagnosis is usually given when the symptoms persist and no explanation can be found. However, in my case, dysautonomia explains the symptoms above. So, I have occasionally been told that I cannot have both dysautonomia and ME/CFS, as they are mutually exclusive.
Yet, my doctor, and other dysautonomia specialists are theorizing that they may, indeed, be related. A book I am currently reading states that it is estimated that 96% of ME/CFS patients demonstrate some form of orthostatic intolerance (the diagnosing factor of POTS).
“In fact, there may be, at this point, sufficient cumulative evidence to support the idea that CFS/ME actually is a form of dysautonomia.”
With a possible connection between the two, my doctor explained he has been reading up on ME/CFS and possible treatments as possibilities for his dysautonomia patients. Some scholars believe ME/CFS is caused by the Epstein Barr Virus (the virus that causes mononucleosis), the herpes virus, or other viruses. Therefore, ME/CFS have been experimenting with antiviral medications. My doctor decided to conduct an experiment with me and prescribed an antiviral to see if it helps with my fatigue.
photo credit: RaGardner4 via photopin cc
Trying new medications can be nerve-racking. I have flashbacks of vomiting in the shower then falling down as I tried to get out when I tried a new medication years ago. My body is overly sensitive to foreign substances and any new medications can cause serious effects. While I’m excited to try out a new theory about dysautonomia, I’m a little nervous about being a guinea pig.
Here’s the part where I tell you how being on the medication for only five days has changed my life, and I’m bouncing off the walls with energy now. Except I developed a major migraine over the weekend. And slept for over 16 hours on Sunday. And have been pretty dehydrated since then. So, my role as a guinea pig is not off to a great start.
Maybe next week.
In other news, I’m getting on an airplane this weekend. I do not travel well and have not been on a plane in over two years. To say I’m apprehensive would be a huge understatement. With any luck, I’ll sleep for the whole thing.
Question: How do you handle new medications? Do you get nervous being a part of experiments to see if a new medication works for your condition?
“Courage is not the absence of fear, but rather the judgement that
something else is more important than fear.” ― Ambrose Redmoon
Stay tuned.
– L
I have tried a couple of things when being given a new prescription. I have tried holding it in my hand to see if I feel anything (sometimes that is all I need to know if it is ok), I have tried muscle testing (holding the pill in my left hand and having someone test my muscle strength in my right arm which for me usually isn’t a very reliable way to go) or I have just simply taken a small portion of the drug to see what happens. If I react, at least I have only taken a minor amount compared to the whole pill.
My doctor once told me: “Courage is not the absence of fear, but rather the ability to do what is necessary and right despite fear.” He told me this when I was heading to Dallas for my hysterectomy.
I wish you the best with this new medication and hopes it makes all the difference in the world for you.
i take a small portion of the pill, too! any new medication, i start by cutting it in half. if it doesn’t cause any major effects for a few days, i take the whole thing. looking back, i’m surprised i didn’t do that with this new pill.
i like that quote from your doctor – i think it’s very true. it doesn’t take courage to do something you are not afraid of, but being afraid of something and doing it anyway – THAT takes courage! 🙂
Exciting to hear about your upcoming travel!!
New meds always scare me, if I have side effects I worry and if I don’t I think it isn’t going to work.
Carrie at Just Mildly Medicated
me too! if it has effects, i have to debate whether it’s worth dealing with the effects. if it doesn’t, i end up wondering if they gave me a placebo pill 🙂
“Question: How do you handle new medications? Do you get nervous being a part of experiments to see if a new medication works for your condition?”
I handle it very, very poorly, and carry on like a baby!
I’ve had a bunch of wild and awful reactions to medications, and doctors just labeled me as crazy because of it. Come to find out, I’m missing and enzyme (called the CYP2D6 enzyme) that metabolizes over 20% of all known medications. Basically, they don’t clear my system, so even with tiny doses, they can cause insane side effects.
And best of luck with your trip! I haven’t been on a plane in…..23 years! So you’re one up on me. Here’s hoping for a smooth and easy ride for you.
wow, 23 years! thanks for putting things in perspective 🙂
that’s very interesting about your missing enzyme – are you able to take any medications?
If you have an iPod, there’s a great meditation you can listen to about fear of flying….many people say it helped them tremendously during their flight: https://itunes.apple.com/us/podcast/meditation-for-health-podcast/id290478854
I can take many meds…it’s just a major production finding one 😉
I get excited about trying new medications. Fairly frequently, they do way more harm than (if any) good. However, I love having the opportunity to try something new to help with my symptoms and the ability to check another treatment option off the list. I feel like the more things I know DON’T work, the closer I will get to finding something that does. Keep us up to date on how the anti-viral drug is going. That’s really interesting about ME and POTS being mutually exclusive. It makes a lot of sense! It turns into one of those “which came first, the chicken or the egg?” type things though.
that’s a great way to look at it – if this medication doesn’t work, i can cross it off the list of things to try.
🙂 I can be annoyingly optimistic — feel free to slap me
we could all use a little optimism now and again 🙂
We have, depending on many thngis, like age, length of illness, type of past treatments, financial and social support and so very many other factors, both overlapping and different needs . Unlike in the way past on the Internet in regular boards devoted to what was then called CFS and now (properly I think) ME a chance to learn about and participate in discussion on research (which then was slight), policy, our clinical experience (and frustrations), and more personal issues that many of us were struggling with.For a long time now, as my physiological situation has deteriorated with age and length of illness that has gotten worse, and concommitant (sp?), for me, lack of digital skills or equipment (yes, I don’t have a smart phone, ipad, ipod, and worry about my old computer going I actually need to talk about how to hold on and though I recognize it is very very important have less ability to keep sharp with the clinical and basic research.The other day my only medical insurance decided to stop one drug I need and have been on for a very long time, threatening to force me to find another plan D that covers my drugs and the one they are withdrawing coverage of. As I attempted to research the drug they offer instead I saw the term methylatiion. I knew that has been discussed in ME serious stuff but I was too overloaded to start from square one in order to make sense of it for myself. And there was simply no group that I knew of that I could ask.It would be wonderful to know what skill sets limit some of us, what our main needs are, where to go for what withoiut sitting for hours and hours (I can’t due to pelvic bone pain). Once, long ago when I fell my confreres on a well-known list got together and found a wonderful person who actually came to my apartment (a stranger but who was known by people I trusted) till I could get an out of town friend to gather me up and take care of me till I could manage. I can’t imagine where any of this could occur now for anyone. Maybe some of us are at a stage of being ill and aging and being worn down that we simply can’t expect to have our needs served when there is lots of potentially relevant basic science and clinical experience/research far more advanced than before.I am not sure these comments resonate. And I am in a sufficient crisis that I can’t do much participating in what I here have tried to express but maybe others who some of this touches who have a bit more freedom of time and energy might take it up in some way. If it doesn’t I suppose this isn’t the first mumble on the web the might not move anything forward. I’m to frayed to edit so forgive..Best,Judith
Do you mind me asking what new anti virals you are on? I am pretty weak around viruses and while I take lysine it’s not the best, I’m sure. As others have said here – I do to muscle testing too….
I hope the tips I suggested before might have helped you with the migraine!
the medication is called Valacyclovir HCL. i’m not yet sure how much it is helping, but the good news is, i don’t hate it. i have had surprisingly few side effects from it so far, probably less than any other medication i’ve tried.
thank you for the migraine tips – they DID help! in fact, i wrote them down in my little black notebook so in the future i won’t have to log on to the computer to see them when i have a bad migraine!
I have a few bottles of Gatorade always on hand now….and had to get into them the last few days. My FAV is the cucumber and lemon flavor with a squeeze of lemon juice. YUM. Plus, the T3 helps quite a little bit. 🙂
I don’t seem to have any problem with new medications, to the point that I haven’t noticed any improvements with any either. As a result I stopped them all about 4 years ago. After my latest lingering crash I’m reading the book above as well trying to work out where to next. Hope you have a trouble free trip!
thank you! when you’re finished, i’d be interested in hearing what you thought of the book. i’m still learning a lot about ME/CFS. although it was my first diagnosis (before dysautonomia), i’ve been focusing on the dysautonomia moreso and only recently started reading up on ME/CFS.
I think it all got too much for me and I gave up on research and everything. I went to a psychologist for a while who focused on not saying you have an illness but symptoms of it, with the goal being that ME/CFS didn’t stop me from living life. I can see the point she was trying to make but I took it too far and feel like I’m starting from scratch all over. I’ll let you know when I finish the book 🙂
Trying new medications always scares the bajeezus out of me too. The last three medications I’ve been put on each landed me in the hospital a separate time. Doesn’t exactly inspire faith does it – when our medications can do so much harm while we’re just trying to get a little better.
I’m glad the new med is going okay so far. I’ll be keeping my fingers crossed for you!!
I love the medication art – contest idea? Haha.
I hope your plane ride goes well. I used to be so nervous about it, but the last time I was on a plane it was sunrise and we were flying against it, so the sunrise lasted almost the entire flight. I forgot to be scared. 🙂
I’ve been so curious to know more about ME/CFS. It’s so awesome that you found something to give you more energy! I’m so tired all the time, but that’s a symptom of everything else I’ve got so I haven’t delved into it much. I’m excited to hear what you learn!
Thanks so much for visiting my blog recently. I didn’t know much about POTS before I read your blog so thanks v much for educating me on that! I have ME / CFS and you’re right it does sound v similar to your condition. Apologies if this has already been mentioned and I’ve missed it, but for energy have you tried D-Ribose? I’ve recently started taking is and had no side effects and found a real lift in my energy. Can’t say I’m bouncing off walls (if only…) but definitely an improvement. In case you don’t know, D-Ribose naturally occurs in our blood but (surprise, surprise) is deficient in many ME / CFS patients. So by taking the supplement you boost the ATP in your cells which then boosts energy production (or at least I think that’s how it works, I’m no scientist!). I take a 5g scoop dissolved in 500ml of water and sip it through the morning and then I do the same again through the afternoon. I know other people who take the supplement as a capsule too. I like the idea of gently topping myself up throughout the day so I haven’t tried the capsules. I’ve found it really helps so just thought I’d mention it. I hope your plane ride went smoothly and you didn’t suffer too much. I’m soon going to be travelling too (flying to the US) which I haven’t done since before I got sick two and half years ago so I can totally share your apprehension about flying. Jess.
Thank you for visiting my blog! I have not tried D-Ribose, but it sounds like it could be helpful. Thank you for letting me know about it! Good luck with your travels! WHere in the US are you going?
I’m going to Philadelphia to visit my sister, she’s at Grad school there. So excited about seeing her but a little wary about what the trip might do to my body but hopefully I’m taking enough precautions for it not to affect me too much. How was your trip? Hope it went smoothly. Or are you still to go? If so Good Luck!
Had to weigh in. After being sick for 2 years and being mistreated by the medical profession I accidentally ended up on Acylovir then Valtrex ’cause my ears started ringing –one of a zillion symptoms that came a new one each day–and I went to an ear doc.
MAGIC! WHEN NOTHING ELSE WORKED I STARTED GETTING BETTER!
Shorter story–I got well. but it took time–and I had to wean off the stuff so slowly you wouldn’t believe me if I told you how I had to cut pills in tiny bits.
To stop it suddenly ’caused a whiplash–just a warning. Also I relapse if I have surgery or get sick and have to do this again. One ID tried to tell me take 2 grams of valtrex at once then I’d be instantly well. Period?
DON’T DO THIS! Large doses of anything are a mistake!
The whiplash when it wore off was terrible.
Takes a smaller dose for months to work–or did for me. PLEASE TRY TO STAY ON THIS DRUG IT WAS THE ONLY CURE THAT WORKED FOR ME!
Hope this helps you ”cause I do know how it feels to have no place to go no one to help.
Best wishes!
XOXOXOX
Sandy
I know this is an incredibly old post, but it gets at a medical mystery I’ve been wondering about. Dysautonomia International seems to state that ME/CFS is a cause of secondary dysautonomia, but I can’t figure out when or if it’s worth having both labels. Dysautonomia explains all my symptoms, so far as I can tell, so I’m not pursuing another diagnosis. Why voluntarily add diagnoses with the current risks to U.S. insurance for those with pre-existing conditions? But, I wish I really understood if CFS causes dysautonomia, is a type of dysautonomia and, if you already have multiple types of dysautonomic subtypes, how you would know if CFS is one of them/exacerbating them.
I wonder the same thing. before the diagnosis criteria of ME/CFS was reworked recently, it included “unexplained fatigue” for a prolonged period, I think it was at least 6 months. I was originally told that I had ME/CFS, but was later told I didn’t have ME/CFS because my fatigue isn’t unexplained – it is explained by dysautonomia. I don’t know that there’s currently any benefit in adding a diagnosis of ME/CFS, as the treatment is similar to dysautonomia. I think dysautomomia could be secondary to ME/CFS, just how it can be secondary to prolonged bedrest or surgery, or other illnesses that can interfere with the autonomic nervous system (ANS). My mom has a degenerative brain disease, and it has effected her ANS, leading to dysautonomia. So, I do think ME/CFS could cause dysautonomia, but I think we’re left with the question of what caused ME/CFS.