Wednesday, July 28, 2010

Beta Blocker crash and BURN!!!

Well after my last post over viewing my symptoms at this stage I have entered a new zone!! NOT a good one. I decided to give beta blockers a go for my orthostaic intolerance problem. Great idea, helps some people, nearly killed me hahaha.
I took a tiny tiny dose 4 nights in a row and by the fifth day I thought I was going to die. I had a severe reaction and they worked in reverse. My blood pressure got much lower and heart rate much higher, terrible headache, nausea, stomach cramps. It also made my body crash in a general sense, all my other CFS symptoms ramped it up.
Obviously I did not take the little pill on the fifth night and I saw my Dr on the 6the 6th day. My Dad had to virtually carry my into the clinic. It was awful.
My Dr (who I think is fantastic) said it was a reaction blah blah blah and I needed to stay horizontal for a few days and start the lots of water and salt thing. This was now officially a full on POTS episode. He also suggested we keep clear of any medications that my body wasn't already familiar with (sounds like a good idea to me). My friend Michael came and spent the next few days with me, feeding me although I felt so rotten I could barely eat. My Dr also suggested I come back in a few days and we try a Saline drip. He said the problem is low blood volume. If you don't have enough blood your blood pressure will be low and your heart beats twice as fast to try and pump it round sufficiently. Made sense to me. So in theory, putting Saline into me would increase the volume of blood and should alleviate the symptoms temporarily. I went and did this a 2 days ago and it was like magic! I instantly felt better and it lasted for almost a full day and although the symptoms came back they are not so severe. I am going today to have another go. Apparently if you do this say twice a week your body starts to recognise that new volume as being normal and will correct the problem itself over time. I think it's worth a go.
Also my Dr has set me up with a POTS specialist to go see in a few days time which is fantastic. It usually take months to get appointments with these people. The POTS guy may or may not have anything to add but it's better I go see him. If he wants to experiment on me them I am going to insist he admit me to hospital to do it. I don't want to be home alone ever again and have a crash like I did last week. It was totally terrifying and has left me with all my symptoms worse than they were previously. I just hope that after a few weeks I come back to baseline and that I get the POTS under control. It's crap not being able to sit up to eat and worse to fall off the toilet because your dizzy!!!!

Oh, and again, thanks everyone who commented on my previous post, it's very much appreciated and fab to know that others have experienced the same issues etc.
Mark, I'd be really keen to talk to you about Stem Cell stuff. Please drop me an email so I can get in touch - Cheers!


  1. I hope you feel better soon Lee Lee!
    I also have extreme OI, so I know the joys of falling over all the time.

    Sending well wishes your way <3

  2. Lee Lee! Oh my gosh! I am so sorry! That is horrible. I'm so glad you are okay! I can't even begin to imagine how scary that was.

    I will be keeping you in my thoughts that you get back to your base quickly! Good luck with the POTS doctor! :-)

  3. Keep in touch you poor old thing. That dizziness is being attacked by a whirlwind.

    Thinking of you :O)

  4. So sorry you had such a bad experience with the beta blockers. Just wanted to say how helpful I find IV saline for OI/POTS - and to encourage you to keep up with it for the time being to help you get over this dreadful crash. Very good luck with the specialist, and of course, if he is any good, I'd love to hear about it! My email addy is in my profile. Warm wishes to you :)

  5. Wow, sounds like you got lucky with your Dr. The saline IV's really help? I've heard that somewhere before and if low blood volume is the cause, it makes a lot of sense. I hope they help you long-term, that would be excelent. I have (undiagnoses) POTS but I'm sure this is what it is with the dizziness on standing and sometimes fainting.

    Feel better soon Leelee

  6. What a week you've had- UGH. Glad to know you are on the upside of the "beta blocker" experience and have hope that the saline drips will help you stay upright longer and feel relatively better. I couldn't tolerate beta-blockers myself, they made me feel worse than I felt without them (they kept my heart rate too low to compensate for my drops in blood pressure).

    Awesome you are going to a doc. who specializes in POTS. I've just recently became aware that their are such docs. Consistently, everytime I've had surgery and a saline drip, I feel great for a couple days. I didn't know that it is possible to have the drip as treatment, cause if so, I'd go for it. The low blood volume makes absolute sense.

    When I was pregnant (many years ago) and needed more blood flowing in my veins, I had to go on complete bed-rest due to a 160-180 heart rate every single day. My OB/GYN said in was akin to running a marathon each day. Cardilogist wanted to put me on beta blockers then, but could not tell me if they would affect the baby. Glad I didn't take them at that time.

    Hope the saline drips keeps working and the POTS specialist has even more tools to help.

  7. I am so sorry that you reacted this way to the beta blockers - thankfully you had family and friends that were able to step in and help you through this. It must have been quite frightening. Your doc sounds wonderful and very knowledgable and sounds like he's getting you on the right track.

    Feel better soon - but remember the best way to do that is to take it easy and follow doctor's orders.

    I'm thinking of you.

  8. Oh no! You are having such a rough time. I'm really sorry to hear it. But you listened to your body and acted on what it was telling you. Take care of yourself now. . . . (((hugs)))

  9. Oh, my gosh - sorry, I'm behind and reading in reverse order! So sorry the beta blockers not only didn't work but caused such an awful reaction. I never tried them myself.

    Yes, best to stick with salt and fluids for a while.