CallieAndToby

Hello just wanted to wish everyone a happy holiday! I do this group online just for fun and we get photo assignments so they wanted eggs in black and white. The eggs are from my late grandfather's navy travels, antiques hand painted eggs from Japan. Then my favorite candy. 

2 hours ago, TorturedSoul said:

@CallieAndToby22you and I seem very similar. I actually tried to do my second sleep study last week and could not fall asleep. It happened the first time too. I just couldn't fall asleep and it's so frustrating because I NEEDED that study done. I have torturous sleep. For the longest time my biggest issue was that every time I drifted to sleep I woke up feeling like my heart stopped. And BAM then my heart would go crazy fast I would feel weak and start hyperventilation. This happens only in the transition phase. Sometimes every time I drift or sometimes just the first time. Terrible terrible. Years ago when this started they caught the episode. I was relieved thinking I would get help. They said it wasn't related to a drop in oxygen. They were bewildered. Still can't figure with why it happens but magnesium glycinate before bed seemed to control the horrific episodes. I also would wake up feeling faint or weak   Like fainting in my sleep. Throw in nightmares and my hands falling asleep every night too. Overall acetyl-l-carnitine and alpha lipoid acid (one supplement) have helped me tremendously. It has calmed something down where my lightheadedness is better. My feeling like blood rushing to abdomen and weakness is better. My sleep is a little better. I wonder if you would be willing to try it as we seem similar. I actually hosted an Easter party yesterday for my kids and felt pretty good. I'm not there yet but much better than I was and this so far has been the only supplement that I have noticed a big change with. 

Does seem like we have some things in common, which is not good for either of us. So my sleep study experience was a nightmare, I was lucky to fall asleep at all. I have horrible Interstitial cystitis and bladder problems related to dysautonomia and my routine at that time was go to the bathroom over and over and over till I wasn't in pain and could fall asleep, now that creates a huge problem in a sleep study. I knew one of the girls working there and she showed me how to unhook myself b/c they were tired of coming in and out!!!!!! So I finally fell asleep for 3 hours and they said there was constant fragmentation and unbelievably high heart rate during my sleep! I'd already told everyone I was running on adrenaline all the time and now they believed me so Bystolic did help. Lately though, I'm getting into a restful state but opening my eyes up at 4 am and realizing I've never fallen asleep! What in the world is going on? I will look into that supplement, I have a bunch of supplements around the house so thanks for that suggestion. I'm sorry you couldn't fall asleep, they need to do this stuff at our homes b/c there are so many variables! My uncle (who has since passed) did a sleep study and he told them he can't sleep unless the television is on so they put it on, he fell asleep, then they came in and turned it OFF and he woke up wide awake and he was mad! He's like, "why did you turn it off???" But he was diagnosed with sleep apnea, I don't have sleep apnea or restless legs and the sleep physicians here are pulmonologists not neurologists so nobody can pin point what is going on.................. I think the extreme decrease in cerebral blood flow is a massive contributor to the sleep problem, this doesn't seem to be an issue with all dysautonomia patients, maybe I'm wrong, but I actually have proof of it. When I was just 27 years old I went and saw a top neurologist at NYU (I actually read about him in a book and sent a letter I wrote) and we did a PET brain scan with contrast dye and the radiologist whom happened to be in a horrible mood paged my doctor and said, "what is wrong with this girl? her scan looks like an 85 year old with alzheimer's." Not only that I had an allergic reaction to the contrast dye and had to be put in the hospital for a day or two just to recover, never ending. So the results were hypoperfusion all over my brain and the doctors didn't know what it meant but I did get an accidental trial of ivig and daily saline iv's b/c of it which really helped but that was for 6 months and the insurance didn't want to pay any more b/c it's unbelievably expensive, which btw with your diagnosis of small fiber neuropathy you could get ivig but you need to do a lot of research as with everything, there are side effects and I think b/c it's made from human blood donors and the covid it's in very short supply and your doctor will have to fight insurance, but for me a life saver that is unattainable. So now I know what the results mean based off an ME website: "Cerebral hypoperfusion is inadequate blood flow to the brain. Chronic cerebral hypoperfusion is linked to neurocognitive disorders." 

So I haven't had real sleep in daysssss. And then I'll have a good night then it goes back to horrible. Sleep was one of the first things to go when I got sick as a teenager. This constant feeling of running on adrenaline doesn't help. The guanfacine I was prescribed is making the insomnia worse. Something that actually helps is saline iv's. I'm on a lot of sleep meds/downers and still doesn't help. When I did my sleep study at least a decade ago it showed extremely fragmented sleep and my mean HR was 90 at times in my sleep reached 120, this lead to me seeking a dysautonomic specialist and the beta blockers Bystolic does help but not enough. Having IC and being in constant pain certainly doesn't help. For me it definitely has something to do with the adrenaline. Does anybody have sleep problems? 

I did start a thread on this sort of recently. It's under the chit-chat forum and titled: "Bathing is very difficult for most of us. What are some quick hygiene tricks to stay clean and looking decent?" 

I chopped my hair off to make it easier to maintain and dry shampoo is a must but some people make it and I bought all natural to avoid chemicals. 

I used to very much be into fashion most of my life before ending up bedbound. The key is to be comfortable. So I ended up thrift shopping and buying a lot of beautiful flowy dresses which is better for IC as well and wearing colorful tights underneath. I love vintage clothes which don't tend to be tight fitting and a good pair of jeans always works. Dresses though will always look dressy and beautiful and they're comfortable. I don't wear any jewelry, that is a hassle for me. I don't wear make-up but lip gloss and sunglasses are something I love. My lips are always chapped and a nice shiny lip gloss is simple and comforting. 

The only thing I can use for acne is the aloe vera acne lotion, take a tiny amount and covers the face, no chemicals, doesn't cause allergic reaction. There are many good bees wax and aloe vera products. 

1 hour ago, KiminOrlando said:

I had one dose of Moderna and I was fine. I have Mixed Connective Tissue Disease and HPOTS. Oh and some kind of mast cell "issue".

I have blood cancer and an immune system that doesn't function properly b/c of treatment. So it's very frightening for me. I quit doing flu shots b/c they made me so sick. 

Nice information. Someone online said they were allergic to the actual ingredients in the vaccine. 

On 3/29/2021 at 2:58 PM, Ashc said:

Wow, I am jealous. Really my kind of day. I would love to do the gardening, but I have to admit I'm not good with plants. Don't you have to have the green thumb for that? 

@CallieAndToby22 The photo is awesome btw. Reminds me of Japan for some reason.

I have some indoor plants and the succulents especially don't require much care at all! I think succulents are really neat. 

11 hours ago, yogini said:

Decaf has trace amounts of caffeine.  Caffeine increases blood pressure and HR.  I'm not that caffeine's impact on cerebral blood flow rules it out for dysautonomia.  Some people need it and can't function without it.  Others can't tolerate it.  I've always heard that those who can't tolerate expereinced an increased HR.  I never heard the cerebral blood flow discussion before.

 Salt only works to increase your BP if you chase it with water.   If you are not taking  the recommended amount of water with your salt, you will be less likely to see the benefits of the salt. 

I'm not ruling it out, I'm merely pointing out how it can affect the brain. Another member and I were discussing why stimulants and vasoconstrictors make us both very very ill and he/she pointed out that caffeine at certain doses a day decreases an average of 27% of cerebral blood flow according to government research articles and studies that can be found googling. I'm not telling people to stop using it b/c my mom is an RN needs it and drinks it every morning; I'm sharing information that may be helpful. Our discussion on this is under the food sensitivity topic. Last time I was on vacation near the Grand Canyon I drank part of a chai tea not realizing it was caffeinated and as we left I was stumbling and falling over on the side walk, just the way I react and my blood pressure tends to run low. 

I was recommending the salt tablets that you put in a glass of water, it dissolves, and you drink the water either at that moment or like me, I drink it through-out the day. Dr. Thompson got me started on the tablets. My mother can only find them at one specialty pharmacy here. But when used with a full glass of water it really doesn't taste salty at all, this is the only way I can retain fluids.  

2 minutes ago, Pistol said:

Hi @CallieAndToby22 - I have a port and get infusions up to 3 times a week, depending on how I am. I used to have to drive 1 hour to a infusion clinic and stay there for 4 hours to get infusions, meaning my husband had to kill 4 hours in town while I was getting the IV. For me too the infusions would only help for a few days and then the effect would go away. Back then I was in the ER every 6-8 weeks for autonomic seizures and syncope. I - like you - have IC and could not drink enough fluid, plus for some reason oral salt and fluids were not as effective. I seemed to pee them all out, whereas IV fluids stay in the blood vessels. ---- My local cardiologist was the only one who felt a port would be good for me but did not want to go against my PCP. I begged my PCP and my autonomic specialist for years to let me have a port for home infusions but they always felt the risks outweighed the benefits. Until one time I was in the ER for seizures and high BP and they admitted me and the hospitalist refused to give me IV fluids b/c he believed that if I can drink I don;t need them. I ended up crying and begging, saying I did not have to be in hospital for that. He said I can sign out anytime. I ended up having 2 more seizures before he finally agreed to give me a half bag of IV fluids - just enough to send me home. That was the final straw for my PCP and he agreed to the port. I never looked back since then. I have a nurse come once a week to change the needle and other than that I do everything myself. If I feel bad ( and as you know this can come on very suddenly ) I give myself a bag of fluids and improve instantly. I have not had a seizure other than from surgery or from a triggered flare in years. I have not been in hospital for seizures or POTS in 3 years and - although still being disabled, housebound and limited - have a much better quality of life. 

The best thing you can do is to print as much info about the benefits of ports as you can and bring them to your appointments. I even printed out success stories ( like mine ) or other's and gave them to my PCP. Remind your doc that in your case you are not able to take in orally the amount of fluids that you need and therefore are a good candidate for IV fluids. If you are not able to get fluids as an outpatient in an infusion clinic on a weekly basis then that is also a reason for a port and home infusions. He could try a PICC line first to see how much you benefit if he is not comfortable with a port right away. Both my sisters have POTS and they both get IV fluids at their doc's office preventatively, he inserts a needle each time and takes it out before they leave. But for outpatient infusions like that you would have to be well enough to go to an infusion center or clinic every week. 

Your doc might change his mind if eh sees how you respond to IV fluids. Demand that he orders them weekly for one month, even if you have to travel to a clinic for it. Then show him how much you improved while getting the fluids - this can be proof that you benefit from them. Best of Luck!!!!!

 

Thank you so much this is very helpful. I'm sorry you had to drive 4 hours! And I am the same with you, I don't retain fluids and it just makes me go to the bathroom more which makes me worse but my body does retain the saline iv's. 

I asked my local cardio for the saline iv's religiously over the years b/c I've had them in the hospital and elsewhere but she always refused. My PCP will send me to some place one every 2 months but it only helps that day and I'm back to crazy sick but the saline iv fluids seem to be the only way I can retain. I just don't know how to get any medical professional to agree to it..... What was your process? I have terrible syncope and seizures every week so it seems like at this point it would be good idea. A friend of mine had a very difficult time making this happen for herself but it helps her a lot, she does infusions daily. 

Decaf still has caffeine right? I was discussing this in another thread but caffeine cuts off 30% of cerebral blood flow so it could cause the lightheadedness you describe. 

Do you have salt tablets? I dissolve them in water then drink it quite diluted and it's the only way I can retain fluid. I don't drink what they recommend my bladder problems are horrific and I can't spend all day in the bathroom so it's kind of just do your best. A lot of people drink electrolyte drinks, there are all kinds my bladder just can't handle the citric acid or potassium so I go with the dissolvable salt tablets. 

7 hours ago, Nin said:

Omg if I went in a hot spring I'd be on the floor! 

Lol, yea I didn't do it!!!! 

2 hours ago, Nin said:

It must be a flare as I do feel much worse. I had the covid vaccine a week ago, I hope its not anything to do with that.

I haven't had any other medication other than bisoporol and sodium tablets. I think they need to try me on more to see if I can control my pots. Then see if that helps my fatigue.

Funny CallieAndToby22 said about hot water as I had to stop having a bath because of the heat. I do turn the shower on hot, so think its time to turn down the heat.

 

Yea it's really hard to do but a lot of my friends have to take cool showers. Ugh.. One of my friends got into a hot spring one time and his heart was racing and he got really sick. 

Dysautonomia itself can cause horrible fatigue. I have fatigue and really bad post exertional malaise. One thing to note, if you shower with hot water it does mess up the autonomic nervous system and for many people makes them sick/fatigued; I've heard some patients take cooler showers and sitting on a shower chair. Dr. Thompson in Pensacola used to go around wearing an ice vest to keep himself cool, something about the heat is not good but we both live in Florida so... 

2 hours ago, MTRJ75 said:

I just watched Dr Chopra's presentation from the Dys Conf 2020 on Pain Management in Dysautonomia. I highly recommend if you have access. 

At the 20 min mark he goes into Mast Cell treatment. 

At the 40 min mark he goes into LDN, which is one of his favorite treatments. 

I tried LDN at a tiny dose and it gave me horrific insomnia. Unfortunately that is a common problem amongst patients but there is some scientist in Birmingham, AL trying to resolve that side effect because, potentially, a great drug. 

I just know it regulates cytokines, reduces inflammation, and is used for cancer as well. I'm not sure about it's used for Mast Cell. 

1 hour ago, KiminOrlando said:

@CallieAndToby22Thanks. That is good to know. 

No problem. 

Antihistamines are used for IC and known to help. I think for some people there is a connection. 

So the nurse has been "debating" with me about taking medications but finally called them.... She also doesn't know how to do a basic poor man's TTT. It's very frustrating. And I'm pretty sure they need more than just my blood pressure but my HR too. 

On a side note, I'm having great difficulty sleeping, I tend to get very relaxed then open my eyes hours later to discover I haven't even fallen asleep.

I thought about this today. Melons are low in acid and low in calories and taste really great; mangoes and bananas have a lot of fiber in them. Cucumbers and chocolate help with blood flow but what I like about cucumbers is I can put salt on top of them. I was going to suggest eggs but I just read your original post again. 

I think the supplement you mentioned is used for mitochondrial disease as well. 

6 hours ago, Pistol said:

I put the bit of energy I have in the spring into gardening. I create themed flowerbeds around my property and add to them every spring. A lot of the plants I start from seed, so I get busy in March and go until May. That works out great b/c once it gets too hot in the summer I pretty much have to stay inside except for early morning and after sun set. 

When the flowers are done I have another project - I will refinish an antique desk in my bedroom. I can do all the sanding and coating on my shady porch in the mornings. I used to love working with wood but d/t POTS I haven't been able to do much of it. 

My mom does all the gardening and I take the photos!  I'm grateful she does keep things looking nice around here. 

6 hours ago, Pistol said:

@CallieAndToby22 - I would have the nurse for the neurologist that will be doing the BP measuring check with Vandi if they indeed want you to hold the meds. 

Yes that's the best idea. Other patients are saying they were never told or their providers were never told what to do either. So I will ask her to contact them. Thanks. 

So according to 2 Vanderbilt patients on FB I'm supposed to get off any autonomic medication for 3 days prior. 

I can do photography occasionally. Art is super therapeutic! The picture below is of some sort of Japanese plum tree blossoms in my yard. It's in manual focus with a cool vintage lens, I added a pink tint filter to make it more monochrome. 

So after waiting 8-9 months, Vanderbilt has contacted my referring neurologist about doing blood pressure testing on 3 separate dates. However, nobody can tell me whether or not I need to stop my autonomic medications like when you get a TTT, does anybody know? My blood pressures have actually been fine lately but that has no stopped any seizing or blacking out so I'm kind of worried it will be normal. 

My neurologist's nurse has contacted me about doing this so I'd like to! It'd be nice to be at an actual facility where they can do a lot of testing. And they can refer me to other doctors as needed, which is needed. My latest CBC showed: high blood platelets, low MPV, and high IG%. 

Thanks.