I don't like phone appointments. I've done three, and they are just not the same.
Although there is one nice part - I get to lay down during the appointment!
I had three things on my list: Anti virals, tremor, and OI (Orthostatic Intollerance).
She confirmed that my fainting episode, lightheadedness, and the rise in heart rate is OI. Of course, I have ME right? I think that the Dr. I saw in May was just uneducated. He didn't notice a change in BP but she said he may have not waited long enough. She's sending me a prescription for compression stockings...blah. Not excited about that especially in this heat. I'll also continue to load up on the salt and water. Has anyone else tried these stockings?
The shaking/tremor could be related to the OI, it could be neurological M.E. stuff, or it could be something else. Since she couldn't observe it, she wants me to have my NP look at it. So before that appointment (later in August) I'll do some things I know will trigger it....all I can say is it's frustrating to have another ridiculous symptom that may or may not be treatable.
As for the anti viral, I'm going to up my dose a bit and keep a symptom log for my throat. I wasn't very helpful in knowing whether there's been any change on the viral symptoms. I still get low grade fevers...my throat still has blisters (although I don't think it's been as sore) and my lymph nodes (arms) are painful on and off about the same as usual. It makes sense to track these symptoms to see if the anti viral makes a difference.
She's excited to have telehealth in her office now. She said that hopefully we could do my next appointment with telehealth. I'm hoping my NP is willing to help make this happen, because it sounds like it might take some negotiating on this end.
Wow, a phone appointment - how cool! Wish I could do that. It sounds like you covered a lot of ground over the phone.
ReplyDeleteI have used compression knee socks, but I didn't need a prescription - I just bought them from a catalog. I guess they helped a little - I now only wear them if I'm flying and not doing well.
LOts of salt and fluids help a little, but medications can help to treat OI very much. I agree with your doctor that the last doc probably didn't test you for long enough. Lots of doctors think they can detect CFS-related OI by simply measuring BP lying down, and then standing up, but OI is different than typical Orthostatic Hypotension...it sometimes requires standing for 10-15 minutes before symptoms are evident. AND, you have to be careful to stand EXTREMELY still - no fidgeting, no wriggling your toes, no moving your fingers, etc.
Meds for OI to ask your doctor about include beta blockers (which have worked well for me), certain SSRIs, and Florinef with or without midodrine (though Florinef rarely works well for adults). You've seen Dr. Rowe's OI article, right? He's got a great section on treatment you can share with your doctor. Treating OI effectively can help a LOT with all sorts of symptoms.
Good luck!
Sue
Sue,
ReplyDeleteI would like to try a Beta BLocker at this point...esp. if the tremors are related to the OI as well? My specialist tends to be very drug shy - try all the non pharma. treatments first. She's esp. this way with those of us who are so drug sensetive (like me). The exception is sleep meds.
So I'm guessing she wouldn't go that route (Beta Blockers) until I've tryed the stockings...sigh....I guess I can ask her but it will now be another 3 months til we talk. I think I will take that article (Dr. Rowe's) to my NP when I go, though, so she understands OI from the ME point of view.
I tried the stockings and they did help with the low BP but made no difference to the other OI symptoms I had like increased heart rate, chest pain etc. The beta blocker has been the only thing that really made a difference for me. The downside to the beta blocker for me is that it has caused Raynauds which is a drama ....
ReplyDeleteUpnorth -
ReplyDeleteAnother non-pharma. treatment for OI is to raise the head of the bed 15 degrees. There've been studies done with teens (who often have severe OI) that showed significant improvement. Somehow, it helps to reduce fluid loss at night, which preserves blood volume and helps reduce OI symptoms. We haven't tried it yet - I keep meaning to, but the catalog where I saw a bed wedge no longer carries it. I was up about 5 times last night, peeing like crazy every time - I'm sure it would be good for me! Hope the stockings help. Meanwhile, lots of V-8 juice, Gatorade, and ramen noodles...
Sue
Lee lee, do you think the beta blocker caused the raynoids? I seem to have it on my fingers, mild but def there. I know it's sometimes goes along with autoimmune stuff. Just curious is all?
ReplyDeleteYou both make me want to try beta blocker, if there's not improvent by next appointment I'll ask for them outright.
You know, it's not like OI's new for me. I've had it since I first got ill. It's just recently it's a little worse and I thought I might try to get some help with it. Esp. since I've heard from you both and others that it is treatable to a degree.
I am able to do phone appts. too plus skype with our homeopath doctor. It is all helpful. I hope things improve for you and that the doctors figure it all out and are open to your suggestions, etc.
ReplyDeleteI don't know if the beta blockers caused the Raynauds for me but I didn't have it until I had been on the drug for a while. I know that is can cause it and obviously if you already have it then it can make it worse. I wouldn't let that stop you though ... The worst that could happen is that you may not be able to stay on a beta blocker ... but maybe for you it wouldn't be a problem ...
ReplyDeleteHi Upnorth, I have just been catching up on your blog posts. Sounds like you have been having a really tough time and attending the course sounded really hard.
ReplyDeleteI get tremors when I stand up sometimes, and I always assume it is POTS-related, though I was actually wearing my heart monitor when it happened and my heart rate was not that high, at least not higher than when I don't shake. But who knows if it was my BP too. I still think it is related and maybe combined with low blood sugar I sometimes wonder, as often it happens when I am trying to get some lunch which is also around the time my Midodrine dose runs out and I have to take some more.
Anyway, I hope that you find some relief from the fluey symptoms that seem to plague you much more than me, it must really drag you down. I bought a thermometer and all seems normal and stable so far, but I have not had many ups or downs during this time to really test it.
Interesting that you think you may not meet the new International Consensus Criteria (perhaps you would show neurological signs on proper testing though, we are often not aware of it all ourselves). I was also reading a criticism from people who have gradual onset, that they would not have a 50% reduction in function for some time and it would be useful to diagnose earlier for them. Nothing is perfect, but I am so happy to see some progress, I hope it will be noticed.
I have not tried stockings as pressure on my legs causes neuropathic pain, but I can see that they should work even if totally unappealing!
Sorry to waffle, take care.