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Almost fainted before funeral.


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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? 

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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. 

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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. 

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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. 

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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. 

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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. 

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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. 

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