Chuckz Posted September 9, 2015 Report Share Posted September 9, 2015 I am sure there are people with the same issues and may have some suggestions to help. There are days were I feel so tired and extra foggy than usual. Almost feels like the Flu without the fever. It usually lasts a few days and then it gets a bit better. Never good but good enough to function. I am currently on Fludrocortisone and Midodrine. Trying to eat better and trying to swim every day I can. Any help would be appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted September 10, 2015 Report Share Posted September 10, 2015 Maybe upping your fluid and salt intake (if your doctor has recommended extra salt for you) a little could help on those worse days? I don't really have any other suggestions other than resting. I'm sure some of the other people on here will be able to help. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 10, 2015 Report Share Posted September 10, 2015 My POTS Neuro did try me on Aderrall at one point for my fatigue. It didn't help me but it really had NO effect on me at all. That isn't unusual for me as I don't feel any effects from a lot of meds like opioid pain meds, analgesics, etc.. He did have to have it pre-authorized since this is usually an ADD med but it was approved as there is some evidence for using ADD drugs for POTS patients apparently. Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 11, 2015 Report Share Posted September 11, 2015 My son had low iron and D levels and this can zap your energy levels. So you might want to get those levels checked. You might also want to get B-12 levels checked.Getting out in the sunlight 10-15 minutes a day can help raise energy and mood levels.Exercise is good for you as long as you don't over do it.My son drinks 2 liters of water everyday but he also drinks liquids that contain potassium like G2, the Vitamin Water flavored Fruit Punch, or orange juice so potassium levels are not depleated. Fludrocortisone can lower potassium levels. Hopefully your doctor is monitoring these levels. Quote Link to comment Share on other sites More sharing options...
Chuckz Posted September 14, 2015 Author Report Share Posted September 14, 2015 Thanks for the input. Having some real groggy days, Quote Link to comment Share on other sites More sharing options...
srb Posted September 14, 2015 Report Share Posted September 14, 2015 The midodrine helps me with this some, but it can be brutal when it's wearing off. I'm supposed to try a stimulant like Ritalin soon Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted September 16, 2015 Report Share Posted September 16, 2015 Sorry you are feeling poorly. I am also on midodrine (10 MG 5 times a day) and florinef (0.15 MG 3 times a day). Being that I am on tube feeds I know that for me the foggy head and tiredness is not necessarily nutrition. I do have trouble maintaining electrolytes due to the florinef and so when I am extra sleepy I usually try to get some extra electrolytes. Recently was diagnosed with iron deficiency anemia and have noticed I have a marked increase in energy since starting to take suplemental iron. A couple months ago the fatigue was so bad I was barely up for 4 hours a day and even that was spent primarily in bed, due to extremely low blood pressure and passing out. My neurologist had me do a 5 day course of IVIG and ALL my symptoms have improved since then. I am now able to engage in life again! When I do have a flare they are not as severe or as long lasting. I'm still not better yet, still pass out and still have those days where ever things muddled and extremely exhausted but I have more good days then bad. I hope you are able to find out what works for you. Its a lot of trial and error. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 17, 2015 Report Share Posted September 17, 2015 Ancy, you may have already explained in another post, but what tests or condition had your neuro say that IVIG is needed? I only ask because we all know how hard it is to possibly try a treatment, but can't because insurance won't cover it stating it isn't used for this or that condition. So, any insight would be helpful! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted September 17, 2015 Report Share Posted September 17, 2015 Hello sue1234, My neurologist was able to get the initial authorization for IVIG through Autonomic Neuropathy, however my insurance is now denying further treatment because they do not see it as medically necessary??? Makes no sense to me why they let me have the initial treatment but will not continue... They have denied the appeal my dr made and so now he is trying a Peer to Peer review. The home infusion company has been very helpful trying to sort it all out, and I think at times they are more frustrated with the insurance than me as I have 5 doses in the fridge and no way to infuse... My Dr had the idea of IVIG on the back burner for over a year as for awhile he was unsure what my diagnosis was. He finally decided to try it after he did some research, really grateful I have a Doctor who will do that, know they are few and far between. He believes that my onset/trigger for Dysautonomia was probably an inappropriate immune system response to an infection with high doses of steroids thrown in. (I have abnormal immune blood work that doesn't point any specific direction) He believes the IVIG works in my case by reseting that response. Like I said I have made significant progress even with just the 5 days. My average blood pressure has gone from 80s/50 to 100s/60s and thus I pass out about half as much as I used too. What has been your experience with IVIG? Quote Link to comment Share on other sites More sharing options...
statesof Posted September 18, 2015 Report Share Posted September 18, 2015 For me personally I found that amitriptyline was helpful with my brain fog, it seemed to counter the effects for some unknown reason, however I don't believe that my brain fog was necessarily related to my POTS since it wasn't typically brought on by what I was doing physically. Though since my POtS symptoms got worse I find I have a new form of brain fog when I'm pushing my limits physically, this amitriptyline does not seem to help, but it's shorter lived and I can tell that I am setting it off by pushing my body too close to its limits. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 18, 2015 Report Share Posted September 18, 2015 ANCY, I have not used IVIG. I'm hoping with the latest research going on regarding finding elevated autoantibodies in POTS patients, maybe we as patients can have this option of having IVIG infusions to see if treating the autoantibodies helps. After almost 10 years of waiting for some kind of breakthrough, this is what I'm waiting for.I'm so glad you had so much improvement after your 5 infusions! Quote Link to comment Share on other sites More sharing options...
writerlymom Posted September 18, 2015 Report Share Posted September 18, 2015 Chuckz I know there are things like Ritalin that people try. For me two things seem to make a difference- getting extra activity, especially light weight lifting, and taking a short nap in the day. Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted October 2, 2015 Report Share Posted October 2, 2015 When I had fibro fog (from overdoing the day before usually caused my fibromyalgia to cause more fatigue and brain fog) But also because of the difficulty with focus and concentration I was on Provigil for a few years-really helped me a lot. The "Video" on this website talks about a few different stimulator meds tooDebbie Quote Link to comment Share on other sites More sharing options...
spinner Posted October 8, 2015 Report Share Posted October 8, 2015 I am sure there are people with the same issues and may have some suggestions to help. There are days were I feel so tired and extra foggy than usual. Almost feels like the Flu without the fever. It usually lasts a few days and then it gets a bit better. Never good but good enough to function. I am currently on Fludrocortisone and Midodrine. Trying to eat better and trying to swim every day I can. Any help would be appreciated. ThanksSwimming is brilliant. It should snap you out of that gray feeling, especially cold water, and brisk breathing.Klonapin helps a lot of people, because it seems to regulate the autonomic nervous system.Potassium---they make mega K by presciption might help. Ive noticed low sugar gatorade can clear that fog.Cold air ALWAYS helps. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.