CallieAndToby

Thanks for the responses everyone. I am on a lot of medication at night and it doesn't help and makes me sedated and drugged next day. I have been taking melatonin for the past 15 years every night. I wake up and can't get back to sleep even if I take medication and melatonin. Things have especially been worse since the tinnitus started, makes it very hard to relax, sleep, fall back asleep, causes more adrenaline. CBD has been the best but I have already tried other reputable brands and it simply has quit working. I saw a neurologist and he said I was extremely sleep deprived and prescribed yet another sleep med but it's completely illogical to keep taking more medication when it doesn't help and makes me next day sedated and drugged. I wish they would look for root causes instead of drugging patients!!!!!!!!! I've even tried things like xyrem in the past. I am also in a lot of pain without any treatment and severe Interstitial Cystitis and bladder pain, frequency, urgency, not feeling empty....... Very bad headaches as well but in my state they don't want to prescribe anything, they send us to medical marijuana doctors but I've tried that and it didn't help my pain.

Have they done hormonal testing? Some of my androgen hormones are very high but still no diagnosis they say I "might" be on the PCOS spectrum but no treatment offered. I wanted birth control but it causes clots as does my cancer. I eat extremely healthy, bedbound so can't exercise but when I could exercise I didn't lose any weight. Mostly I forget to eat and eating makes me sick. Maybe they should check for an endocrine cause? I know some people with dysautonomia have hormonal problems and there is a medication metformin for weight loss in PCOS; I don't qualify for this medication because my A1C is completely normal and good.

The tinnitus is getting worse and it's causing a lot more adrenaline surges. I'm just not sleeping much at all and cbd was the only thing to get me any sleep but it has quit working and I've tried other brands and they don't work (only 2 have worked in the past year). This is all so scary. I'm sorry you're falling, it's just awful, I thought I'd fractured my shin because I fell and hit it so hard but luckily it was just bruised terribly which isn't that great either. I hope you heal quickly.

Awesome thank you.

The ones I get dissolve in water. I make sure it's quite diluted so I don't taste it. But it does help in terms of retaining much more fluid with the salt versus without.

I would love to try mestinon!! Thanks for letting me know things lessened in terms of tinnitus. Mine has been getting worse and just no sleep. This is all so complex.

So I've been relying on CBD to help with sleep for quite some time now but for the fourth time it quit last week and I haven't really slept since and I could not travel to UAB, my mom made the final decision on this based on many factors. Increasing the dose doesn't help and I'm just tired of dealing with it plus certain brands of CBD won't work while others do, dosing is difficult and it doesn't address the adrenaline and just stops working after awhile. They give me autonomic stuff to take during the day but I'm so sleep deprived I get extremely sleepy so I'm wondering what do dysautonomia doctors prescribe at night to calm down the sympathetic nervous system for restful sleep? Last night I took all my usual meds and it doesn't feel like I slept at all, no energy, eyes rolling around in my head. I don't have anybody to prescribe mestinon but I'm wondering if it's something that can be taken at night? I take a beta blocker on top of sleep pills atm, not helpful. I have tried gabapentin in the past and tried it again last week and it causes an insane amount of next day sedation for me, just makes me a zombie, so not something I can tolerate.

I'm still searching as well. I was too sick to go to UAB and my current doctors don't use things like mestinon, etc. I'm having trouble with constant adrenaline and I can't sleep or rest. I'd be interested in seeing your list and I think in general many patients are having trouble finding doctors that are extremely knowledgeable in autonomic dysfunction.

Thank you. And thanks for all the responses.

Any YouTube suggestions? I'm bedbound and it leads to racing thoughts, especially before resting or sleeping. My mom keeps recommending mindfulness etc. but I don't know where to start. Also have bad OCD that is a result of the dysautonomia and other health problems.

Thank you for your response. I'm supposed to get testing soon with ENT. One thing I've noticed is that vasoconstriction of the brain lessens the tinnitus where-as Vasodilation makes it much worse. Have they discussed treatment options with you? And yes the movements and neurological problems are beyond frustrating and to not get any answers.

My mom wants to set up an older record player for the family and play her old vinyls and I've been buying new vinyls. Recently I bought a Tori Kelly and Twenty One Pilots vinyl but nothing is set up yet. My grandfather kept all his old vinyls as well, which is crazy, but he has old Chuck Berry vinyls and anything in the 50's rock n roll genre. Video is with Twenty One Pilots and Mute Math.

Yes it's great exercise and great fun! I really like swimming at the beach with all the waves as well, but I've been too sick. My two older cousins are both surfers. I used to decorate my entire room with dolphins/porpoises but I outgrew that kind of decor as I got older. Are you still able to swim? How often? Do you prefer a pool or some body of water?

Yes losing blood. I don't have any issues with seeing blood, needles, etc. The last test they did was at Mayo Clinic to completely rule out adrenal insufficiency and I had to sit up for far too long and they took about 8 vials of blood which resulted in myoclonic movements and movement disorder in the exam room. It usually takes days to recover from losing that much blood. I guess I'll discuss it with my oncologists in the future. A lot of my ME friends have the same issue.

Not being online has provided some time to fiddle on my acoustic instruments so I've listened to "The Weight" by "The Band" and learned it on bass and I've learned "My Girl" by the Temptations on guitar and bass. It's about the only time I can get lost and lose some of the OCD ruminations and my mom plays with me sometimes, we played a little last night and my grandfather really enjoyed it. So those two songs are rather swirling through my head a lot. My grandfather is totally obsessed with The Band, this is my favorite live video with The Staples.

It is bad. Have you found anything that helps? I mean I was given guanfacine but it lowers my bp even more and gives me horrible insomnia. My POTS doctor is adamant about getting this all assessed by a neurologist....... I'm sorry you're dealing with this and hopefully you can recover.

Thanks. I've been taking B12 every morning for awhile and methylfolate at night but I haven't had any labs done in a long time so I really don't know where I'm at with anything though many months ago my folate was very low and the prescription folate (non methyl) didn't do anything to raise numbers. I wonder about my iron because I only eat fish. The cancer I have is chronic so it raises my platelets too high and I have no idea where they are in terms of numbers....... The issues presenting are that they now have to use an ultrasound to find a vein (which has only been available at mayo) and once a young woman had a vein finder for my hand (ugh), so the basic labs around here can't do it and then after I lose blood I get very very sick and it takes awhile to recover. Does anybody know why some patients get sick after losing blood while others feel better? I remember this discussion years ago on a young adult mostly ME site and nobody seemed to understand this issue.

I have to order groceries to get delivered, just a thought for you, it is definitely easier to choose everything on the apps and have it delivered to your front door.

I was never competitive though very competent swimmer and my chosen exercise, before dysautonomia I could swim all day but post dysautonomia I had to set a time limit on my swimming. I think it's different for everyone but I would have to rest afterwards after a set time. It's so fun for me so I would overdo it so maybe set an actual timer. Some of my friends set timers for activities even as menial as talking on the phone. I grew up doing all kinds of water sports but played volleyball competitively. I like your profile picture and I actually swam with a dolphin once, fond memory. One time I was kayak fishing in a bay somewhere and a huge pod of dolphins popped up jumping all around me and it really scared me as they were bigger than my kayak but I headed back to our rental vacay home and they followed me all the way back, exhilarating, but scary.

I self referred but you may get in sooner with a doctor's referral. The neurologists who do neuromuscular are the ones also treating dysautonomia, if you call they can give you a list of those neuromuscular neurologists or it's on their website. Hope this helps.

Sure. I've been seeing a cardiologist named Dr. Robert Luke and he's nice and mostly knows about POTS. So far we've only tried midrodine. He did do a 24 hour halter monitor which had never been done. I found a wellness center near my house that is run by a NP and does all sorts of infusions including saline but it's always booked. I guess people are really desperate for certain things that aren't readily available... Wish I could be of more help.

Nobody has ever tested me for small fiber neuropathy even though I've been in horrific pain since I was a teenager! I've had other autonomic testing done (not everything you've mentioned) but with a positive TTT and Valsalva but the medications don't help or the side effects are so brutal I can't take them. IVIG helped in the past but not significantly and nobody will order saline infusions or a port. I really want to know what the cancer medication did to me! I have tried increasing fluids with salty water and I just go to the bathroom more and more and it totally disrupts my rest and sleep. I've had major bladder issues since I was a young child and I've received all sorts of diagnoses but with IC I'm definitely on a very strict and boring diet but I'm not on anything for pain because of all the restrictions. I have also been treated for encephalitis which is why I got the short trial of IVIG (years ago) and I had a lumber puncture done at that time at NYU and the PET brain which like I mentioned earlier, came back highly abnormal. It seems quite torturous to travel to UAB just for the small fiber testing, can't somebody locally do it? Thank you for your kind response.

I have not been on the forum in a long time because I have continued to decline. Again, this decline started after the use of a cancer medication that suppresses and alters the immune system; it depleted my white blood cells for a couple months. I have uprooted my entire life to move to a big city and nobody is listening about the seizures, myoclonic movements, movement disorder, convulsions, inability to be upright, AND NOW for the past 2 weeks I've had constant bilateral whooshing / tinnitus in both ears but it gets substantially worse when upright and my body is trying to produce more adrenaline and it's completely wrecked my sleep. I have seen neuro after neuro and they keep referring me to POTS doctors which would require me doing autonomic testing all over again and I simply cannot be upright for more than a few minutes and I had the testing done 3 months ago at UAB. I saw an ENT yesterday and he found some interesting things but tinnitus is considered some ear problem though I can hear it reverberate through out my brain and it's constant and loud and it has really crippled me. I have been falling a lot lately too. I fell twice in the kitchen, once on the hardwood floor, in the bathroom I hit my shin and really hurt myself, and I was sitting on a stool for only 3 minutes and passed out and hit another stool then the floor. We had to beg my cardiologist for midrodine and I failed the trial with the medication; my reaction after only taking 1.25 mg was falling asleep (my mother an RN monitored my BP and it was fine) then all day I'm laying there and it did not help me be upright though helped the tinnitus a bit, so then I try a tiny little piece of the 1.25 and it did the same thing made me tired and when I come off of it it's horrible. I have an appt at UAB but I'm extremely sick and I don't know if they have anything to offer other than the typical autonomic meds. I truly believe something is underlying the POTS and causing the dysautonomia and that was worsened with immunosuppression, I can't get anybody to even do a lumbar puncture and check for an infection, I don't know what to do plus back when I was in my 20's I had a PET brain scan done at NYU and it came back highly abnormal but nothing really came of it in terms of a diagnosis. When I worked with Dr. Thompson he was great but I failed every medication or supplement he tried meaning I had some crazy bad side effects or reaction. I've really only responded well to the saline iv's and I can't get them often enough and the past two times at a major medical center here they had to get somebody to use an ultrasound just to find a vein (they told me they were super deep, tiny, and moved around and twisted a lot). The local oncologists don't know why when I took the cancer medication for only 3 months it destroyed my health but mainly autonomic nervous system, I wish I had answers, the stress and anxiety is bad and I have continually declined so I am in belief there is some sort of infection per research the medication is known for causing infections or reigniting "silent infections". The doctors will listen and say yes that's a possibility then I get referred to yet another POTS doctor, I should mention that my cardiologist is scared to do anything because he wants a neurologist to look into the seizures, etc. I was literally doing my normal routine when 2 weeks ago the tinnitus started and has increased in intensity, it is hard to hear and I have worse headaches and brain fog. I have read other topics and a lot of dysautonomia folks complain about tinnitus but does anybody know why it happens and what to do?

I haven't even seen a doctor appointments were way out. You can get in quick for the testing but I haven't seen anyone and I'm wondering if it's worth the trip at this point, I'm so sick.

I'm not sure about zinc but I have weird reactions to vitamins, supplements, etc. Vitamin C at low dose makes me extremely ill and worsens everything. B12 and other B vitamins make me extremely tired. Iron makes me sleep all the time. And coq10 makes me quite sick. Yet no side effects with IVIG... Sorry no real answer on the zinc but I have quite bizarre reactions to things that seem quite normal to most people. Vitamin C is by far the worse for me personally when supplemented and also makes my dysautonomia worse.