CallieAndToby

LOL. Yea I'm hungry too now. My mom got me salmon tonight so that should be good. Honestly, I'd love to eat lots of sweets and cakes and heavy ice cream with every topping imaginable but it just makes me sick, arghhhh. And my best friend is a professional baker. I really crave sweets!

Anything that is supposed to be stimulating like caffeine to Adderall to Nuvigil or simple like B12 makes me extremely tired, lethargic, like falling asleep, dizzy, fainting... it's pretty crazy. Does anybody else have this problem? I do not have adhd. My diet is extremely limited b/c I have severe Interstitial cystitis so vinegar would be acid to my bladder. In terms of dysautonomia I have to eat light meals, I can't have breads, and pizza, and pasta, anything heavy makes me really sick and tired and my brain starts buzzing. I'm actually scared to eat anything these days. I ate some berries this morning and it flared my bladder. I love vanilla almond milk (real vanilla) and real vanilla ice cream in small amounts. Something about vanilla is soothing to the bladder. Almond milk is light and delicious. I put cinnamon on everything, I don't know why, but I like it. I can't have the city water or straight well water from the faucet, I have a pitcher that filters it, I notice a difference if not filtered, especially in taste and if you have problems with bladder it's great to filter water. I do great with fish which is great b/c I live in Florida and my family fishes a lot, fish is very anti inflammatory, I will put packs of wild salmon in with some: mayo, celery, grapes or strawberries, crushed walnuts on top, then salt on top. Overall it's following a strict IC diet and avoiding breads pastas heavy carbs, and mostly sticking to anti inflammatory foods. I actually do good with chocolate, not dark, but just milk chocolate Hershey's, I feel a tad better with it.

Yes, good topic. IVIG helped me but it was a 6 month trial for a different diagnosis. IDK how to get it now.

I can't sleep, taking lots of meds and not helping. Also, how do I get blood flow to the brain and retain it?

So lately it's been super hard for me to bathe. I also like to find all natural / organic products..... or at least stuff that can be recycled after use. I found some dry shampoo that you simply put in your brush and comb through the hair; I haven't received it yet but I ordered it. Dry shampoo is something that doesn't take water, it's quick and easy to put in the hair and soaks up oil and makes your hair looked washed and volumized. I found some all natural ingredient brands on a website (I don't do well with all the chemicals). When all the toilet paper ran out in stores, I ended up buying some wipes but haven't used them yet. Was wondering if that would be good to use for hygienic purposes? I also wanted to ask about shaving. It's just too difficult to sit in a bath and shave with cheap razors. Does anyone know if they still sell the electric shavers? I remember having one of those in middle school! I recently purchased the bites toothpaste bits, they come in a glass jar and you just buy the bites and refill until it's time to recycle. They were inexpensive and come with activated charcoal and mint. The only deodorant I can use is an allmay unscented for very sensitive skin. Any other tips? This might be a helpful thread for everyone.

Hmm. For the past year I've had a female hair stylist dye my hair blue and green. Anyhow, it comes out after a couple of months and did not bother me symptomatically. Now I'm just letting it go brunette although growing up and into college I always had blonde hair. I always wondered why mine got so dark.

This program is great but they aren't getting govn funding and there is at least a 10 month wait and they only select like 10% of applicants. Wish I could get in there! My friend got to go and she was diagnosed with mitochondrial disease. UAB has an autonomic testing lab and they list 15 different types of dysautonomia, though I have not been there.

I would do some research and look at the Cleveland Clinic. I think there are some well known autonomic specialists in Texas but I live in Florida wish I could help more.

Thank you. I actually have terrible bladder problems and I can't drink anything with citric acid or potassium, which is very frustrating. I can't take midrodine because it actually makes it very hard to urinate and that's already an issue (it tightens the bladder). All my health problems are fighting each other and I don't know what to do. My veins are tiny and roll as well, the veins on my hands always blow. I don't have a geneticist in my city and my neurologist did a lot of blood work but that's all. This is very informative thank you. Unfortunately there isn't anyone near me that could evaluate and diagnose this. We have decided to move so I hope I can find great physicians in the near future.

I started having seizures months ago and the first ER doctor said I was "stressed over the pandemic", the second called them "pseudo seizures", the third knew POTS but didn't understand I have HPOTS and terrible syncope. At one point I went to the ER and starting seizing in the wheelchair and they held me down and told me to be "still" so that they could take my vitals. I always had to ask for saline infusions, which like I mentioned, should be an automatic. The third doctor who knew what POTS was asked the nurse to do the poor man's tilt table, but she was in a hurry and after receiving a full bag of fluid in a seated position she quickly took my blood pressure (no my HR) then she had me stand up immediately and took my blood pressure.... I was so scared this would go in my chart somehow. I was also sitting for a very long time after a horrible seizure and I told the nurse I was going to pass out and she said, "you're sitting so it's fine"; I guess she didn't realize.... Overall, the ER doctors have been extremely rude except the one who knew POTS, still can't get an MRI though which was part of why I went. IV saline is a must! A must! I always had to beg for it after these seizures b/c I honestly didn't know what was going on but they helped tremendously.

Thanks for helping on this forum @pistol. I used to be able to swim 8 months ago (pre cancer medication) and I could do photography and music. But now I can only sit up for a few minutes before I start passing out. I too have the dystonic seizures. I'm frightened that I will never do these things again.

A few things I want to add. I've been wondering if I have EDS. I have no veins! I can't even get saline iv's any more and that's the only thing that remotely helps although most of the fluid retains in my stomach/gut area; florinef makes me extremely ill, it does something to my autonomic nervous system that I can't really explain..... I am just wired and tired from that medication. I am scared to eat or drink as well. The water is going straight through me and I'm tired of water with the salt tablets! I only eat in the morning, slices of cheese, some blueberries, and cucumber sliced with salt and I feel like I need to sleep immediately after eating; this has been a problem since my teen years. Back to the EDS, how do you get properly diagnosed? They've been using the same vein on me for many many years, even in the ER they can't find any veins, I noticed this was an EDS type problem.. I have used a heating pad on my bladder for years and it's the only thing I have for severe IC pain, nobody treats pain any more. I tried iron (all types) about 8 months ago b/c my platelets are super super high but it made me sleep all the time and the prescribing doctor could not explain it. I wish somehow all these issues could be looked at collaboratively and solved somehow. You are exactly correct about the blood vessels in the stomach, my mother has been a GI nurse for 30 years and she says that is exactly what's happening, blood being drawn to our stomach to digest. I too get very very ill after blood draws, I am sorry to hear you have this issue.

Thanks!!!

Thank you once again. Did you have to eventually travel there? I did read his pdf on "underlying causes" and was really hoping that would become an investigation for me.

Hello. I'm going to send a private message if that's okay.

Hello everyone, I'm sure some of y'all have seen me around for quite some time posting...... I have an upcoming telemedicine appt with Beverly Karabin NP. Getting this appt has been very difficult. My neurologist referred me and sent their records and my mom sent a bunch of records. They said they had to have a TTT and luckily I had one done a decade ago but it's not really accurate to my situation now, however, it does show that I don't have POTS as the doctor just labeled it Orthostatic Intolerance. My concern now is that I'm bed bound and it's very difficult to speak. My mom will be here for the appt. I'm also very sensitive to noise and sound and talking is one of those things right now. I know they get a lot of patients post chemotherapy and everything did get really bad after my 3 month cancer treatment. Does anyone have any tips for approaching this appt given the severity of my disability? Has anyone seen her or Dr. Grubb? Luckily I did type out a health timeline many years ago (I have not kept it up to date) but it really describes in detail when I first got sick and years preceding. I think the oddest thing to come back recently is very high testosterone levels which seemingly would indicate PCOS but quest labs also says it's an indication of "adrenal hyperplasia" which kind of hit me in the face like wow, this really fits. It's definitely something to bring up during this appt. Thanks in advance.

Sadly, when I had my bone marrow biopsy, they messed up and did not test properly for iron and ferritin so that's still a mystery. My latest labs are abnormal but not really relevant to this thread.

I've been having the same problem! To get through college, I used to fast..... I didn't realize there was some dysautonomia involved. If I eat now I get very very ill, and feel like passing out. I've tried eating just light things like cucumber or melon and it still happens. I've asked my mother for just soup for lunch but still get sick after that.

I'm sorry Derek. I've been bed bound once in the complete dark for a year. Now I am there again. The issue is, doctors aren't getting at the root causes. I have some rare form of chronic blood cancer but the medication I was on severely suppressed my immune system and I suspect an infection; so for me this is not autoimmune, steroids and those types of things have always made me crazy sick..... one of the most helpful things was a 6 month clinical trial of IVIG. My mom asked for my testosterone levels to be checked and they have came back crazy crazy high. I'm waiting on Vanderbilt as well. If I sit up, I black out, if I stand I tend to collapse and have seizures. I've been diagnosed with ME as well but IDK. Every sound and light is shocking to me. My mother is a nurse caring for me but we have no idea what to do. I have been to UAB for my bladder so I have an establishment there and can self referral..... Am I allowed to ask for any suggestions at UAB? I have heard great things about dr coghlan as well but I think he's retired. Getting tired signing off.

Probably some form of encephalopathy. Because I'm extra sensitive to all my medications, but yes klonopin very helpful in the past.

Just so it might help someone. I found an article on EDS and dysautonomia based on your suggestions. https://www.nyit.edu/files/events/content/171208_EDSSymposium_Stiles-Dysautonomia.pdf

Wait I've been researching and I think I have some form of EDS that's gone undiagnosed since childhood. My bladder problems started at age 6. I got really sick at age 18. Terrible chronic pain in high school. I'm so sick now. I have diagnosis of IC too but I think I've got some form of bladder outlet obstruction which alpha blockers like flomax and rapaflo help, but they lower blood pressure so we can't take them.

This is very complex disorders. I will say that when there isn't enough blood circulation going to the brain, I've stood up and gotten very weak and collapsed on the tile floor.

I do feel much better laying down. Sitting or standing leads to palpitations and extreme heart pounding, fainting, seizures. Thanks again great thoughts.

Thank you. Great response!!!! Yes I'm not retaining fluid! Goes straight through me; I've had horrible urinary frequency since I was 6 years old!!!!!!! They called it "overactive bladder" then IC, but it's connected to all of this. Right now I've been getting saline iv's and the water is all collecting in my stomach and feet. Again, not getting blood circulation where I need it. I have been misdiagnosed my entire life. These are some great thoughts.