CallieAndToby Posted February 25, 2019 Report Share Posted February 25, 2019 For a quick background, here are my current diagnoses: ME/CFS, clinical encephalitis, Interstitial cystitis, severe OCD, and hyperadrenergic pots. I live with very severe fatigue and have constant crashes, I spend a lot of time stuck in bed resting, not sleeping, just laying there. A lot of preparation went into this week, lots of rest, my mom drove me 6 hours to south Florida to see my favorite band. I hardly got any rest (in the hotel). When I got to the venue we realized it was standing only; that probably messed me up but I made it through the concert and back home. 3 days later was my uncle's funeral, as we drove up to the funeral home I got out and fell towards my grandpa and he caught me, my mom asked 'are you alright?' and I said, 'no I'm going to pass out'. They both carried me to the back of the truck to rest. Whatever it was passed and I made it inside to perform my uncle's favorite song; I haven't played in front of a group of people since 2007 b/c I'm so ill. I'm back home and I feel like I'm dying. Spent 6 hours in bed today resting, it never seems like enough. I'm not doing all I should for my dysautonomia. Really all I'm doing is taking Bystolic which has helped tremendously. The OCD took everything else away (salt tabs, compression socks, etc.) because it is torture. I can't drink a ton b/c of severe IC, I already wake up every hour at night to use the bathroom and I've done everything for that except for having my bladder removed. I also need long periods of rest. Any ideas? Tips? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 25, 2019 Report Share Posted February 25, 2019 I would say rest. That's all you can do. Have you tried anything else for meds? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted February 25, 2019 Author Report Share Posted February 25, 2019 2 hours ago, StayAtHomeMom said: I would say rest. That's all you can do. Have you tried anything else for meds? Yea I definitely need rest. I have tried other medications, I worked with a specialist until he retired and we tried a lot of things. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 25, 2019 Report Share Posted February 25, 2019 Hello @CallieAndToby22 - I also have IC and hyper-POTS. Whenever I overdo things and get as bad as you describe the only thing that turns things around are IV fluids. I used to go to the ER when I would be that bad or my doctor would give me standing order and I could get them at an infusion center. Some walk-in clinics can also administer IV fluids. Recommended per literature is 1 l NSS over 2 hours or slower. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 25, 2019 Report Share Posted February 25, 2019 16 hours ago, CallieAndToby22 said: Yea I definitely need rest. I have tried other medications, I worked with a specialist until he retired and we tried a lot of things. Have you tried the midodrine? Not sure if it is similar to what you are taking. I take it as needed and it ups my blood pressure. It helped tremendously when I went to visit the Ark with my family last summer. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 26, 2019 Report Share Posted February 26, 2019 I think a traumatic event like a death or funeral could also cause your symptoms to act up. Hope you get some rest and feel better. Have you tried compression hose? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted February 26, 2019 Author Report Share Posted February 26, 2019 17 hours ago, Pistol said: Hello @CallieAndToby22 - I also have IC and hyper-POTS. Whenever I overdo things and get as bad as you describe the only thing that turns things around are IV fluids. I used to go to the ER when I would be that bad or my doctor would give me standing order and I could get them at an infusion center. Some walk-in clinics can also administer IV fluids. Recommended per literature is 1 l NSS over 2 hours or slower. I thought this was a good idea so I called my PCP. He's done this for me at an infusion center several times, so I just told him what happened. 7 hours ago, StayAtHomeMom said: Have you tried the midodrine? Not sure if it is similar to what you are taking. I take it as needed and it ups my blood pressure. It helped tremendously when I went to visit the Ark with my family last summer. I don't think I've tried that. Thanks for the suggestion. 4 hours ago, yogini said: I think a traumatic event like a death or funeral could also cause your symptoms to act up. Hope you get some rest and feel better. Have you tried compression hose? Yes I do have to agree with you. It was a traumatic loss. I have some compression hose that I'm going to try again. I used to use them all the time but started having OCD about them but recently we've found something to help the OCD. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 2, 2019 Author Report Share Posted March 2, 2019 Guys, I fainted again this evening. I'm taking L-methyl folate and it has taken away a lot of OCD but it really messing up my life. I can't sleep, it's hard to get any rest (I have ME/CFS), I have headaches all the time, I feel like I'm dying. If I quit taking it the ocd will come back in full force and make my quality of life really sucky again but if I continue taking it, my quality of life is terrible. My pcp said no saline infusions, "increase fluids", and did that today and since I have IC I was up most of the day using the bathroom and I'm in a ton of bladder pain. I'm just very sleep deprived and can't think of anything else to say. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 2, 2019 Report Share Posted March 2, 2019 Have you tried melatonin or benedryl? Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 2, 2019 Author Report Share Posted March 2, 2019 5 hours ago, JimL said: Have you tried melatonin or benedryl? I take melatonin and a fist full of pills. This methyl folate just penetrates through it all and causes insomnia no matter what I do. My mom found a specialist though so for now I won't take it and hopefully they can shed some light on this supplement. Quote Link to comment Share on other sites More sharing options...
JimL Posted March 2, 2019 Report Share Posted March 2, 2019 22 minutes ago, CallieAndToby22 said: I take melatonin and a fist full of pills. This methyl folate just penetrates through it all and causes insomnia no matter what I do. My mom found a specialist though so for now I won't take it and hopefully they can shed some light on this supplement. I find benadryl puts me out. I haven't had to use it in a long time. I use a CPAP as well. Maybe the timing of your supplements matter. Quote Link to comment Share on other sites More sharing options...
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