CallieAndToby

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. 

I do have the custom ones. Haven't worn them in awhile. 

Good question. I have some beige compression socks but I'm looking for some cute fashionable ones for the summer? 

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. 

10 hours ago, JimL said:

I know there are co-morbidities with certain developmental and other disorders, like Tourettes, ADHD, ADD, Autism, OCD, ODD, etc. Often people will them in pairs.

True. My little cousin has very severe autism and she has ocd. The weird thing with me is I had eating disorders for years (very traumatic) then one day it switched to ocd. Very odd. 

I have severe full blown OCD. What helped is my psychiatrist did some genetic testing and found I have an MTHFR mutation/deficiency and I was put on L-methyl folate, at 1mg my ocd reduced by 75%, so it's definitely something biological. I tried everything including: ketamine,and TMS, and all meds, nothing helped until this methyl folate but it's causing me really bad insomnia. I'm going to talk to a doctor today that understands this and see what she thinks. I also did CBT, ERP, the erp is supposed to solved everything and it never helped just caused a  lot of frustration. So for me it's something biological, it hit when everything else hit me at the same time when I was a teenager, all connected somehow. I also suffered from eating disorders for years, both ocd and ed's originate from the basal ganglia region of the brain, I'm still left puzzled but i'm doing better just not sleeping. Gotta get help with this. BTW my psychiatrist is not a quack he's been testing for this for awhile and has seen a lot of help, usually he prescribes Deplin.  OCD is quite different than GAD, OCD is torture and misery and manipulation of the mind, there is no way to describe it, I even get delusional thoughts with it, it's just torture. 

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. 

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. 

I'm new to this forum but not to chronic illness. I've been sick for 16 years and I'm only in my early 30's. Everyone in my life ditched me, including my father, but I have an awesome: mother, brother, and grandfather. I have met a lot of people online with ME/CFS who also have dysautonomia. We started a support group on FB but it's private so you'd have to add me as friend and I'd have to invite you to the group, but it's a friendly bunch just not a lot of posting b/c some of the admin are literally bedbound. 

Yea that's pretty sweet. I play the guitar mainly, piano for songwriting, and I played the bass for a long time but had to quit due to sudden neurological pain in my right hand. My mom has been playing piano all her life so we have an upright and a keyboard but no organ. 

"Unrest" is really good. But it's not about getting well, it's more about showing people what ME / chronic fatigue syndrome really is. I know the girl Jen who made the documentary and it's spot on for how we live. My psychologist saw it and said it was "quite moving". 

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?