CallieAndToby

So I have an upcoming appointment at Vanderbilt but I've already tried every treatment mentioned on their website and failed every one because the bad side effects outweighed any good. I'm also getting over a bad sinus infection and I'm just exhausted from not sleeping and running on adrenaline all the time. It would be a long drive and I've already had autonomic testing down twice and I've seen many dysautonomia specialists through out the years and the only medication that has stuck is a beta blocker and saline infusions help and IVIG which are unattainable atm. I'm dreading going through all the testing again, the tilt table test is difficult for me. It's very hard for me to recover from anything because of adrenaline and my bladder hurting (need to urinate) all of the time and OCD plus my parent has to work with a new job. I've waited a 1 1/2 years for this appointment but I'm not sure if the experience will be any different than all the others or if anything different will be offered or if they'll look outside the box? 

Addition: My neurologist wants to refer me out of state to Emory or John Hopkins neurology so that's something I have to take into consideration. 

15 hours ago, MikeO said:

Glad you enjoy the scenery

The creek photos is really nice! 

17 hours ago, Nelson G. said:

@CallieAndToby22LOL THAT'S SO PRETTY

Thank you. 

23 hours ago, Pistol said:

@MikeO @CallieAndToby22 - I live at high elevation smack in the middle of the Appalachian mountains. All we have here is undisturbed Forest, cool, clean creeks and cow fields everywhere. Most winters we have snow and it gets quite deep at times. I remember days when my german sheperd dissappeared in the snow! And what I love the most about snow is the smell - it smells so clean and fresh because it removes all of the impurities out of the air. And its super quiet - nothing moves, nothing stirs, and all you hear is the "Plod - Plod" of your boots. We have a steep hill field behind our house and there are many days filled with sleigh rides followed by hot chocolate .. One year the power was out for a week and we heated pots of clean snow on the wood stove for water. And the snow men that lived by the front door ... handsome fellas! 

Well, today is Christmas morning and its 45 degrees, no snow inside. But Santa came anyway and left some goodies under the tree. And as I sit here by the tree waiting for the house to stir I am thinking of everyone here on the forum and wish you all a very merry Christmas. May you be able to set aside our challenges and limitations for a day or so and rejoice in the holiday, family and friends and hopefully a lot of presents! ( Mike - did you get coal? )

That sounds lovely and Merry Christmas. It was very hot here which is unusual as we're usually burning wood in the fireplace by this time nevertheless, many people were outdoors taking advantage of the sunshine. 

16 hours ago, MikeO said:

@CallieAndToby22not sure if these are the same berry's but they are sure pretty covered in snow.

That's very beautiful. I love berries but the snow just gives it a magical look. 

3 hours ago, Nelson G. said:

In my country we don't have seasons,  these pictures sure look magical!

Merry Christmas everyone!!!

I live in a tropical climate as well and it's just hot and warm and hot and maybe a cold snap. LOL. This photo is kind of as wintery as it gets. 

These are some Festive images I've taken this year. One is just meant to be cute and funny. 

Very beautiful, thanks for sharing. I'm not used to seeing snow, well perhaps only a few times in my life (travel) as it does not snow where I live deep in the South. The second photo almost looks like a canopy road but with snow, very pretty. We tend to do a lot of christmas lights to compensate.  

Neurodegenerative diseases can cause a lot of the symptoms you've mentioned: autonomic dysfunction, severe bowel and bladder problems, etc. This sounds acute though, was there anything that triggered or prompted this array of symptoms? Have they tried any of the dysautonomia treatments? I don't really know much about dysautonomia and autoimmunity. 

I have a medical mystery as well and can't sit up for even a few minutes without going syncope and I'm still looking for a root cause as well. I also have severe constipation and I've had extreme bladder problems for as long as I can remember. I wish I had more to add but I don't know much..... I really hope they can figure out what's going on with your father. 

I had a friend that was sick for a long time and bedridden until eventually she couldn't urinate for days and ended up in the ER where an MRI showed lesions all over her brain. She was diagnosed with MS which is a neurodegenerative disease and it was causing her terrible dysautonomia, bladder, bowel, pain, fatigue, but now with MS meds she is slowly recovering. What you've described does not sound like MS but it's just another example of a disease that was essentially causing all of her symptoms and unfortunately they just labeled her with "Chronic fatigue syndrome" for decades. 

I need peripheral vasoconstriction but after a week or so I can't urinate and I'm just breaking off a tiny piece of the pill unless it's Extended release like myrbetriq. In the past when I was much healthier Myrbetriq when even administered in the morning would cause insomnia at night and I'm having bad insomnia and non restorative sleep atm. I also have a sinus infection and now they're saying it could be "viral" but it's been months of dealing with this. I'm very sensitive to medications and especially the dysautonomia meds, I've looked at websites and pretty much tried everything except for weird things like Procrit and just so many side effects. Also need help retaining fluid but I can't have fruity flavors, citric acid, or potassium as they flare and burn my bladder so trying to figure out how to retain fluid has been difficult and it becomes nauseating drinking salty water all of the time (have adverse neurological reaction to florinef). I like midrondine but it is the worst offender for urination difficulties/complications. I have IC and suspected bladder outlet obstruction. I wish myrbetriq would come in a lower dose than 25mg but it doesn't and it's extended release so can't be scored..... Things I've tolerated the best are: Certain beta blockers, antihistamines, Luvox, compression garments, saline iv infusions and ivig but currently I can't get the saline infusions or IVIG and the antihistamines mostly only affect the sinus areas.

18 hours ago, potsdo said:

I’m going to stop the Elavil. I don’t think it really helped. I went to the ER yesterday with chest pain. Luckily the Coronary CTA was completely negative so I’m sure the pain is coming from the sympathetic surges. Interestingly, the medical provider I saw knew quite a bit about Dysautonomias. Her suggestion for me was Klonopin. I’m going to speak to my PCP about it. It’s funny how things happen for a reason and how people are placed in your life at the right time.

Klonopin has been really good for me, one of the best. Good luck. 

9 hours ago, potsdo said:

It made me hungry all the time. I gained weight on it. Exercise is supposed to help but, of course, what do you do when you're exercise intolerant?

Yea I hear you! I am exercise intolerant as well. When I got sick I was a competitive athlete and then I developed severe post exertional malaise. I think nortriptyline made me hungry all of the time as well, I just remember not being able to sleep I was so hungry and waking up in the middle of the night starving. I think Zyprexa is the worst in terms of weight gain but it's great for sleep! I take a small dose of Seroquel now but it doesn't work quite as well as the olanzapine. 

19 hours ago, docpots said:

Amitriptyline does have some Norepinephrine re-uptake inhibition. So, in theory, you've got more NE circulating which could cause sympathetic surges/stimulation. Once I'm out of this relapse, I'm going to wean off the Elavil I'm on and see if that helps. It never helped me for sleep or migraines. It's supposed to block the parasympathetic side and used in conjunction with beta-blockers to block the sympathetic side. The only thing "working" for me right now to get a few hours of sleep is some low dose Ativan.

I took nortriptyline for years and it was very helpful for sleep and mood but haven't been on a tri-cyclic for some time. I'm starting to reconsider because amitriptyline is supposed to be really good for Interstitial cystitis / painful bladder syndrome but I just don't like the potential weight gain aspect of it. 

Ever since I started taking midrodine, then myrbetriq with mestinon, then just myrbetriq in the morning, my sleep is so much worse. It never feels like I've slept and I'm having trouble just resting. The midrodine was preventing me from urinating so the pain would keep me awake. It seems like the only autonomic medication I can tolerate is a beta blocker. The vasoconstrictors also don't help me with being upright, I start going syncope within minutes. I'm so tired, sleepy, fatigued, I don't feel like moving much less traveling anywhere but my new neurologist is talking about referring me elsewhere. Sigh. I have the PET brain scan that was done at NYU when I was very young and the medical community hasn't been able to explain it other than the radiologist telling me, "it looks like an 85 year old with severe Alzheimer's" plus the cancer medication / immunosuppressant that lead me to this point and I continue to get worse, I have explained everything over and over and it feels like nobody is listening. With such sleep deprivation and cognitive impairment I have no idea how to proceed and I feel like I've done all I can. They recently added dayvigo to the mix of nightly meds and it didn't do anything except make me next day sedated. I have noticed that not only with myself but my family members we are all very sensitive to medication and have weird paradoxical reactions, I have had a lot of trouble with supplements and some vitamins as well. Does anyone have an underlying disease causing their autonomic dysfunction like something neurodegenerative, etc? 

Everyone is different. I found gabapentin to be incredibly sedating especially next day and I just couldn't tolerate it. But some people don't have this issue. 

13 hours ago, GasconAlex said:

Something that helps the pots tachycardia and reduces some of the other symptoms are compression stockings. Not sexy, horrible when hot but they reduced my tachycardia by about 20bpm on standing which really helps with everything else. Since they are not pharmaceutical you only have to put up with wearing them. Get them properly measured and make sure that they are at least thigh high whilst being certified as class 2 compression (not sure if the USA uses the same grading system)

I concur, compression garments are very helpful. 

17 hours ago, docpots said:

Medical marijuana does suppress the sympathetic nervous system. A physician friend of mine suggested I try it, but, in my line of work, I don’t want my name to show up somewhere on a list of mmj card holders. Is Dr. Thompson still practicing? I recall he was in the panhandle and was out of the office for a bit because he also has Dysautonomia. Not sure if he’s back to work.

Dr. Thompson retired but I did work with him for a couple of years. I like him a lot but I don't respond well to the medication. 

The pills can be scored and you can probably go down a half, then, 3rd, then 4th of the pill. At least I was taking 1/4 of the 1mg at one point but it caused me to be very tired as well. 

18 hours ago, docpots said:

No good doctors in Tampa. The ones I've talked to all say - "This is uncharted territory." Which means they don't know anything about dysautonomia. There's a Dr. Trevino in Clearwater who supposedly treats dysautonomia patients. Unfortunately, he's so busy with his practice, he's not taking on any new patients. I tried the "I'm also a doctor" but his staff wouldn't budge. There's Mayo Clinic in Jax. That's where I went with my first relapse. They weren't great. I had already diagnosed myself and had done most of the diagnostic testing. Every doctor pretty much tells you to try various meds until you find a combo that works for you. Very frustrating. My best friend is a cardiologist at the Cleveland Clinic and has treated dysautonomia patients and he tells me the same thing I've heard for the last 20 years. What brands of CBD were you using that helped?

It's interesting to hear from a doctor who is also a patient, but I'm sorry you're suffering. I tried to get in with Dr. Trevino as well no luck. No help in the Panhandle is all I can say. And yes I have been trying dysautonomia meds for nearly 15 years with no luck, huge amount of side effects that outweigh any good. I had a trial of IVIG in the past for autoimmune encephalitis and it inadvertently helped the Dysautonomia but it was discontinued by insurance because of cost and now the best thing for me is saline IV infusions but the doctors here are very apprehensive about ordering them. Like you, I'm very frustrated and extremely tired. I used Naysa full spectrum CBD at first and that helped then it quit, then I found funky farms and it worked for a few months and quit, then I tried soul cbd and charlottes web and they didn't work along with many other random brands from local shops. My medical marijuana license is expired so I'm attempting to remedy that situation. My mom has been an RN for 30 years and advocates so much for me for which I'm so appreciative but to no avail. 

34 minutes ago, maggs said:

@RecipeForDisaster Ah! I've only been to Boston/New England once but fell in love with it! I hope to one day move to Boston.

Have you had genetic testing done yet? I did a quick search, and I know Alabama isn't super close to where you likely are, but the University of Alabama at Birmingham also offers an Undiagnosed program separate from the NIH (https://www.uab.edu/medicine/genetics/patient-care/clinical-services/undiagnosed-diseases). And Columbia I'm guessing is close-ish to you, they have the DISCOVER program for undiagnosed patients (https://precisionmedicine.columbia.edu/content/rare-diseases). Maybe one of those could help you? I don't know your personal story or symptoms, but sometimes getting into a place that is interested in the difficult cases is all it takes to start heading in the right direction in my experience. If neither of those locations are close enough to you, I can look for more. I'm much more familiar with what's available on the west coast (since that's where I am), but this has become something I'm passionate about and am happy to dig into so you have more options. 

Thanks for all the information! I didn't know UAB had an undiagnosed program and I need help and I'm in the south!!! There is a program in Atlanta and they rejected me as well. Today I went to a doctor and got diagnosed with sinusitis and I heard him talking to his colleagues about how complex my situation was and he seemed genuinely concerned, at least he was nice. He is very new to the area and didn't have any suggestions but I'm glad you've posted these other centers and programs, this is very helpful. 

I have severe sinusitis that could be the cause of sudden pulsatile tinnitus onset. I'm extremely tired and extreme eye pain and pressure behind eyes and headaches. I'll have to focus on just recovering from this with antibiotics and rest. I've also had a lot of coughing but my covid test was negative. The physician was really nice and suggested a lot of at home remedies including a neti pot and certain teas with honey. 

17 hours ago, maggs said:

It's amazing how different people with dysautonomia can have such different symptoms! I have a different issue- I could sleep all day and all night every day if nothing forced me to get up. Has anyone else here had a sleep study? Just curious. I've had a few and I'm borderline narcoleptic and have mild positional sleep apnea. Sadly, even when I do sleep plenty I don't wake up refreshed and I could very easily lay back down and fall back asleep, so I can relate to the non-restorative sleep. I'm sorry to hear about what essentially sounds like insomnia. That sounds really rough. 

I had a sleep study done a long time ago and essentially it showed tachycardia during my sleep and a lot of alpha intrusions. This was before my diagnosis of dysautonomia but it lead to the diagnosis because my HR was so high! Now I take a beta blocker at night and it has really fixed that but it never feels like I've slept and I can't nap either as the earlier person stated. During my college years I would nap about every afternoon and it helped tremendously because I always had non restorative sleep so for some reason after a nap I would feel like a brand new person and could usually continue my studies, take a walk, and didn't interfere at all with night sleep but actually helped. But with all this adrenaline I haven't really napped or slept well in a long time. I have watched some documentaries on narcolepsy and that sounds awful as well because of the non restorative problems with the sleep and always feeling sleepy, have they offered treatment? I mean I know it entails something for sleep even to the extreme of xyrem and some stimulant or the nuvigil and provigil drugs in the morning. 

16 hours ago, RecipeForDisaster said:

I’m also trying to get into UDN at NIH. Fingers crossed.

 

I've had a home sleep study and I do have very well treated sleep apnea, using CPAP.

Best of luck!!!! Hope they accept you. Really sounds like the best program out there for complex medical cases and my friend has had good success with the NIH UD program and they actually just reopened her case so it sounds like they're really trying to help improve her quality of life. 

On 11/21/2021 at 1:37 PM, docpots said:

Sorry to hear about everyone's sleep difficulties. I'm in the same club unfortunately. I take 0.25 Ativan at night to take the edge off the adrenaline surges. I've been going to bed at 9pm, intermittently nodding off until 3-4am, and then tossing and turning until 6am at which point I just get up. I was just diagnosed with Type 2 diabetes so that's contributing to the sleep issues. It would be easier if I could nap the next day for a bit, but, the adrenaline surges don't let up if I try to nap. What a crazy illness!

I wake up at ungodly hours as well and it never feels like I've slept (totally non restorative). I've tried 2 other reputable CBD brands and it seems to be making things worse where-as 2 months ago it was knocking me out and giving me restorative sleep. The midrodine at tiny tiny dose had some benefits like helping to calm down adrenaline but after a few weeks I was having trouble urinating then this was greatly affecting my sleep and rest and I just had to quit taking it so I'm really bummed, I need some sort of vasoconstriction but the vasodilators are what help my bladder......... Have you found any helpful doctors in Tampa? I'm in North Florida and struggling, I also have many other health conditions and a very abnormal PET brain scan from years ago that has still not been explained. My friend is in the NIH undiagnosed disease program and she went to one place, one setting, and was seen by every possible specialist and they came together as a team to discuss her case, and it was found out she did not have ME but actually primary mitochondrial disease and other things as well as many genetic mutations; this seems to be the only program where doctors come together and discuss everything under the sun together but they only accept 9% of applicants and patients wait about a year to be accepted or seen. 

I can't tolerate any dysatuonomia meds either, they all give me horrible side effects at tiny doses so I understand what that is like. I only got the J&J shot and within 15 minutes I was losing consciousness as well, my vision became double, my eyes were rolling in the back of my head and what I concluded after it took a month to recover is that somehow it greatly affected my immune system. Have they looked into your immune system with lab work etc? May be worth seeing an immunologist and there are neuroimmunologists as well (never seen one). There are some good suggestions like the stand up MRI.

35 minutes ago, Knellie said:

@CallieAndToby22 - That's a good idea. My sister and mom both have PCOS, and I wouldn't be surprised if I have it because I feel similar to them except for some added on neurological symptoms. Thanks for the info! I hope you can find some help for your health as well!!

No problem! And apparently there is a spectrum to PCOS. Best of luck and hopefully you find answers. Metformin is a medication they give some PCOS patients to assist in losing weight. 

Could be an allergic reaction but in regards to ibuprofen and POTS it does have very very mild vasoconstrictive properties. I can't tolerate most autonomic meds b/c of side effects but ibuprofen is really good for me and helps with headaches. Some NSAIDS are vasoconstrictive while others are vasodilators so may be something to look up. Usually if I have an allergic reaction I get anaphylactic reaction but some things like vitamin C and B vitamins just make me sick for some unknown reason and they're just intolerable also if I take iron it makes me sleep all the time. Aspirin is a different option for pain but I was prescribed daily baby aspirin for blood thinning so that is one thing it does; if not taken daily it shouldn't be an issue. I never had an issue with stimulants until after POTS they used to give me energy and now they put me to sleep and make me dizzy, the autonomic dysfunction is definitely bizarre as are my reactions to medications post POTS.