CallieAndToby

10 hours ago, Pistol said:

@CallieAndToby22 - the fact that you don't tolerate fast food and greasy chips may mean that you have a problem digesting certain fats. My husband has this - when he eats fast food or chips he feels very unwell and the next morning he looks like he is 9 months pregnant. When he started to cut out any fats used in deep frying he got better.

I do have horrible bloating!!! And huge stomach at times :(. Thanks for the tips, I'll have to look more into that. 

I actually do well with dairy. I just eat simple flan, whips (light mousse yogurt), these real French puddings with vanilla, and sometimes I just grab a cheese stick. I don't do well with: corn, fast food, high carbs, spicy stuff, acidic, and salads are very hard to digest across the board. I'm mostly vegetarian so I find that black beans and rice is really great and oatmeal is great, I also eat a lot of nuts. I feel really sick after eating greasy chips... 

Yes it helps. I wear it when standing. Also so comfortable and easy to put on and off. 

On 7/27/2021 at 6:44 AM, Pistol said:

@CallieAndToby22 - I know what you mean about being too sick to see the doctor ( haha! ). When I was at my worst travelling out of state to see my specialists 8 hours one way, staying in a hotel and then travel back 8 hours would land me in bed for weeks each time. But I did it because there was no other way for me to get proper treatment. I hope when you go to UAB for testing they will provide you with a contact of someone who will treat you after their diagnosis. 

Thanks, yes it's horrible and I'm not recovering these days. My beds are uncomfortable, so much adrenaline, bladder. I was just hoping for relief now. It's been horrific since October and I asked my doctors then to refer me. 

Yes some are cardiologists and some neurologists but I can't find anyone. She already asked Baptist Health neurology and nobody responded. I have an appointment to UAB autonomic lab but they just do the testing, so I need somebody local. I'm getting sicker and sicker and traveling is too hard, it's really nearly impossible as it leaves me crashed, fatigued, sleepless, incapacitated, and with horrible post exertional malaise (I just returned from Jax Mayo oncology and endocrinology and I'm in dread of traveling again). Just thought I'd ask in case somebody knew of someone. 

So I've got a: PCP, Oncology, Endocrinology but still can't find dysautonomia. My PCP doesn't understand it and keeps saying she'll find an endocrinologist to help and she really downed the idea of saline iv's and talked about all these risks and my mom told her the alternative was having no quality of life. I do have appointment at UAB autonomic testing lab but they send the results to a doctor, that I don't have. I've seen all the lists but they aren't very extensive and some on the list have already denied seeing me... Just curious is somebody knew of some Jax cardio that happens to understand the medications really well and can interpret the potential results? 

Ginger is helpful so sometimes they have recommended ginger ale. It's just a slight help though. 

10 hours ago, Pistol said:

Have you ever looked into bone broth? It is rich in electrolytes, can be organic and also fat free, and you can add as much salt as you like. It is rich in calcium - of course - but I am not sure about potassium. 

I have not. Thank you. 

So with pretty horrific Interstitial Cystitis I can't drink anything with potassium or citric acid and that knocks out most electrolyte drinks. Even coconut water has a lot of potassium and flares me. I found a vanilla shake at one point that might've helped but it had tons of unnecessary vitamins and stuff in it that also bothered me. ATM I can only drink water, water + dissolvable salt tablet, and vanilla almond milk and pretty tired of that need something new would love electrolytes that do help. Also can't have: caffeinated, carbonated, or sparkling water. Last time I was taking electrolyte salt sticks I became so flared and in pain and didn't know why, I ended up at the urologist and after a cystoscopy they confirmed severe redness, inflammation, etc and we determined the salt sticks and after I discontinued my bladder calmed down a lot. Wondering if anybody has found anything IC friendly? I found I can drink horchata but that's not very helpful in terms of dysautonomia. I have asked on IC sites but they say they don't know what dysautonomia is. 

I couldn't read everything in thread b/c I'm pretty sick but I was denied 3 times by paper and eventually had to get a lawyer and go to court for hours trying to explain everything to a judge who knew nothing. I basically told her that there were days and weeks that I could not physically get out of bed and she believed me though she didn't understand the laundry list of diagnoses or symptoms. 

15 hours ago, Pistol said:

@Platypus - I am glad you found relief! Yes, taking in electrolytes or electrolyte rich fluids is very important, and proven to be effective in most cases. There are several threads on this forum regarding this topic. Some people swear by broth, others use coconut water and many find the best relief with sports drinks ( although the latter contain a lot of sugar as well ). And then there are the electrolyte powder packets you can dissolve in a fluid of your choice. 

I hope you continue to feel better!!!!!

The biggest issue I have with electrolyte drinks is the potassium which burns horrifically for IC and the citric acid which is another burner. I have never been able to handle them. I recently got scans done at Mayo Clinic and I had to have a full bladder so I drank 4 bottles of water and some liquid and it helped constipation but my bladder was flared for days just from water, it was making me nauseous as well and I felt like puking and I started early in the morning. My bladder just can't handle much of anything which is so counterintuitive to treating dysatuonomia and low blood volume. Once I was passing out in a Target store and I quickly grabbed a sports drink and it helped a lot, I only drank half, but my bladder was flared for the rest of the week and for me that means urinating every ten - twenty minutes all day and bad at night.  

I have horrific chronic fatigue and if I do any small activity whether mental or physical I crash and feel like I'm dying. I've had fatigue since I was a teenager and I'm confident that autonomic dysfunction in itself causes horrible fatigue. I saw a 96 year old woman dancing on tv and I looked at my mom and said, "she has more energy than me". So I understand what you're saying, it's very sad. 

20 hours ago, Pistol said:

@CallieAndToby22 - most common causes for low blood volume is loss of fluid ( diarrhea, vomiting etc, ), actual blood loss or dehydration by not taking enough fluid in. it means that the FLUID in the blood ( plasma ) is too low, therefore the blood is too concentrated. Like chili - if you cook it too long and too much water evaporates it gets thick like glue. In some cases the body then thinks it is bleeding out and constricts all the vessels. In other cases the BP drops because the heart can't easily pump all of that "thicker" blood and the heart pumps faster to compensate. The way to fix or counteract ( and even prevent ) low blood volume is by replenishing fluids - whether by mouth or by IV. When someone pees as much as you naturally they will be loosing a of of fluid. To keep fluid in the blood vessels we also have to take in salt. 

With me the same happens that happens to you: if I drink tons of fluids along with salt I still pee it out and become hypovolemic. The only way it works for me is by getting IV fluids. Even NACL ( salt water ) infusions go right through me - for long lasting benefits I need Lactated Ringer's solution. LR seems to have a longer lasting effect on my HR and BP. Quote:

Difference Between Lactated Ringers and Sodium Chloride | Compare the Difference Between Similar Terms

 

"The key difference between lactated ringers and sodium chloride is that lactated ringers is a solution containing sodium ions, chloride ions, lactate ions, potassium ions and calcium ions whereas sodium chloride is a salt containing sodium ions and chloride ions."

There is ample evidence in my medical history that LR helps me much better than NACL, and that oral salt and fluid replacement is ineffective. I am not sure if it is b/c of IC that I was diagnosed with long ago that causes me to urinate too much, or if it is because the high norepinephrine levels cause me to pee too much, or fo it is the combination. I know that whenever i get stressed or excited I urinate enormous amounts, constantly and too much to replace orally. IV LR stops all of that from happening, it controls HR, BP and urination. In a good week I can go up to 3 days between infusions and have minimal symptoms AS LONG AS I STAY WITHIN MY LIMITS. 

Great explanation, thank you! I think getting regular saline iv's would help me so much. I used to drink the salt tablets all the time and I still use the bathroom so much. I may need to re-visit desmopressin. As a kid I had to urinate so much and I would get in trouble in class and in high school especially so I trained myself not to drink much, not good, but in the end I had no other solution because they would write me up, etc. 

33 minutes ago, Pistol said:

@CallieAndToby22 - whenever I have to have a - even minor - surgical procedure requiring anesthesia they bring me in first thing in the morning so I can get one whole liter of fluids prior to the procedure, and they keep me longer afterwards to receive more fluids. Doing so has minimized problems during surgery and shortened fares after. 

That's good they do that, I'd never heard of any of this until reading the article last night. @Pistol What causes low blood volume? I think this is a major issue for me but years ago a doctor had me drink the recommended daily water and all I did was go to the bathroom all day long and all night for weeks. I got some saline yesterday than today the little tube dislodged from the vein and my caretaker couldn't hit another vein because they're so tiny and non existent. I'll be glad when I have a. port, if I can get one! 

I was reading articles on saline iv's and I came across one on health rising and it said the following, "Anesthesia can be dehydrating and most of us are, as Dr. Klimas says, a quart or so low in blood volume." 

It actually recommends saline iv's after a procedure, etc. It's weird because when I was 19 I was given Brevital and I went into a very bad seizure. What I've garnered from the article is I must have very very low blood volume because saline helps so so much and when I get 4 tubes of blood drawn at lab, I am stuck in bed for days trying to recover. If anyone else needs the article: https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/

5 hours ago, Heartbroken said:

MomtoGiuliana,

You are definitely right regarding how those Dr.s have a simple understanding about Dysautonomia. I have been to 19 cardiologists and EPs, none of them were interested in my condition except 2 of them, one in Vandy and one in California.

This EP did not bother to physically examine me, only his nurse listened to my heart quickly. I was diagnosed with a TTT decades a go.  For decades I had a very bad tachy, but in the last 5 years switched to brady because of Hypothyroidism and Hashimoto's, but still getting frequent SVT. Thanks for your reply.

I have seen many EP cardiologists myself and none did any testing on me (A CFS doctor did TTT), I'm unbelievably sick and still no diagnosis for autonomic dysfunction. I do have upcoming appointment at UAB autonomic lab but I got sick at like 17 so it's taken decades!!! My cardiologist did the same thing with Northera "let's see if it works" then got really mad when it didn't. I only mentioned risks because I was put on a cancer medication that is very serious and should only be used for myelofibrosis which is pre leukemia, it is not yet approved for Essential thrombocythemia, the doctor told me all the great things then I got on it and declined and declined and was forced to stay on it, finally it wiped out my WBC and destroyed not only my immune system but my autonomic nervous system which was already in not so good shape. I went from semi healthy to blacking out while supine, dystonic seizures, and still nobody has helped and I'm still young and bed bound. It's weird because after a month on the medication the company sent a book like a massive book detailing side effects and I was way too sick to read. The oncologist ended up dropping me. So that's why I mentioned with this medication, because it does seem so extreme, that the doctor should talk about benefits and risks. I also had years and years of tachycardia.

17 minutes ago, Heartbroken said:

Thank you guys for your replies.

My major problem is my BP which gets high whenever I stand, also my tachy would reach 155BPM. Like wise my Migraine med will interact with Northera as I mentioned in my previous post.

If my BP is already high, why would I take a med makes it higher?

CallieAndToby22,

No he never explained that.

I am taking Atenolol and many other meds for other conditions including Eleteriptan for migraine. He did not take me off of any of them.

I am still not satisfied.

I've taken medication without being given risks and one had a devastating affect on my entire health (immunosuppressant). 

I would definitely want him to go over risks with you and the other things I mentioned until you feel satisfied. 

6 hours ago, Heartbroken said:

Here is what he has written to me today:

(The only way to see how you do with the medication is to try it, If you don't feel better on it, then we stop it.

If you don't wish to start it, that's ok too.

I am not concerned about any dangerous side effects if you do choose to start it).

My question is should I stay with him? 

 

 

Has this doctor explained what he's trying to achieve with this medication? I would wonder why it's being prescribed. It's a very strong vasoconstrictor that raises neurepinephrine and blood pressure. I don't know all of the medications you're taking but I'd think he should explain why he's prescribing this. My cardiologist didn't explain anything when putting me on this medication but my old local cardio knew close to nothing about dysautonomia. 

Also, the medication is very expensive and most insurance won't even approve it. If it were cheap and generic maybe it'd be easier to try but it's just super hard to get covered.  

14 hours ago, Heartbroken said:

CallieAndToby22 / targs66/ KiminOrlando/ Sarah Tee/ Jyoti/ Pistol

I can't thank each one of you enough for all your sincere replies. You guys gave me goosebumps for all your knowledge, I wish if those 18 cardiologists/ Electrophysiologists whom I have been to knew what you all know. Thankfully, I have this privilege which I can send messages to all my providers.

I wrote for him:           Dear Dr. (.......)  

I was diagnosed by Dr. Italo Biaggioni, M.D. Professor of Medicine in Vanderbilt with (Hyperadrenergic pots) and that is true, because both of my blood pressure and heart rate will elevate when I stand. And as you know that is due to high Adrenalin.

I was given the same diagnoses by Dr. Ahern in California and by many other EP s. I have provided you all their reports and tests.

My norepinephrine (in standing position) is high (Last test was very high that made my Dr. suspects Pheochromocytoma, which was ruled out later.

Now, my question is, Northera increases norepinephrine and I already have high levels of it, do you think it will be right to take this boosting norepinephrine medication?

I haven't taken it yet because I am concerned.

It is true that I have another condition under the autonomic dysfunction's umbrella, which is neurally mediated hypotension. But this condition in my case is not on regular bases. It happens once in a while.

Best regards.

I will update you all as soon as I hear from him.

Note for Moderators:

Delete my letter if not allowed. 

Good job! 

10 hours ago, targs66 said:

My experience was very much like that of @CallieAndToby22.  My BP runs very low, and my neurologist felt this would help raise it. When I took it, I felt "buzzy," shaky, and overstimulated, and not at all well, and then I felt exhausted after it wore off. I have neurally-mediated hypotension, not POTS, and I'm also ridiculously sensitive to medications, so I wasn't sure that Northera would help me, but I'm glad I had an opportunity to try it.

I find that the things I have tried to raise my BP (Ritalin, Adderall, Midodrine) all have had similar effects: my BP might go up temporarily while the medication is in effect, but I don't feel well at all, and I crash very badly afterwards. 

If you do decide to take it, good luck, and I hope you find something that helps!

 

Yea all the stimulants just lead to me crashing very very badly. My cardiologist told me nothing about this drug and just said she's prescribing something to "help raise blood pressure" and I took It without researching and I wish I had done what you're doing @Heartbroken which is asking questions and researching and investigating. I asked my local cardio the mechanism of action and she said, "raises blood pressure". Hopefully you can push for more answers. @targs66 I still don't have definite diagnoses regarding dysautonomia but my blood pressure it so low, I was wondering if you've found anything to help that? I have a lot of of syncope as well. 

I did not do well with Northera and I have low blood pressure but my old cardiologist blindly prescribed this to "raise my blood pressure". I don't do well with vasoconstrictors though, not at all, but this was a harsh medication and very expensive and it does raise blood pressure plus it made my adrenaline worse. After I took it I'd get more dizzy and tired and fall asleep then wake up worse than before I took it. I tried for a week and I was just in a crashed state the entire time and had to quit. I only took it 1x daily. I am very sensitive to meds, supplements, and vitamins, but after researching  I also concluded that this should've never been prescribed for me personally. This is only my personal experience and I cannot speak for others. But like all stimulants it had the opposite affect and made me crashed and incredibly tired b/c of the hormones and chemicals it raises in the brain.  

12 hours ago, CDNPortGrl said:

Amazing story @CallieAndToby22! Wow, it’s great news that he saw the bite and took action. He certainly averted a lifetime of many unfortunate health issues.

It turns out I will be also using antibiotics so fingers crossed, it goes well!

Be careful about cdiff. I've been on long term antibiotics and several times got cdiff even with flagyl on board. So whatever measures you can take like probiotics, etc. And just discuss it with your doctor. I just like to warn anyone doing this long term. Yes my grandfather is lucky but he said it was only because the bite was so unique to all the others and he couldn't hardly get the tick off. 

7 hours ago, Jyoti said:

Oh my....how incredibly upsetting and frustrating.  If you have to explain dysautonomic dysfunction, you are already in dangerous territory.  This one sounds like worse than a bust.  Walk, no run (you have loads of adrenaline, right) as fast as you can in the other direction!

You have probably considered this (follows in a bit), but I happened on this thread because I am trying to make sense of a lot of adrenaline in my life.  My illness started with exhaustion followed by an absolute inability to sleep.  Or stay asleep. I'd be awakened at all hours if I was lucky enough to fall asleep by what felt distinctly like a surge  of adrenaline.  

Over the years, some kinder doctors thought it was cortisol, and maybe sometime it was.  Much was done to modulate the cortisol,  but I have felt extremely wired but tired for years now.  It never ends.  I too take tons of stuff just to get the minimal amount of sleep I can.  

Recently I have seen a dysautonomia specialist who thinks I have  both  POTS and NMS, but most of my symptoms come from the latter.  This has been surprising to me since I have never  fainted.  But I guess I come really close about  12-15 times a day. Yesterday I got results of a catecholamine test (what a trip with the tech, like everyone else who has done this!) and  finally put together that I am on a grand see-saw multiple times each day:  blood pressure dropping precipitously, coming really close to fainting (and of course I have developed a long list of countermeasures, mostly unconsciously) and then my body releases masses of adrenaline in a last ditch attempt to keep me from keeling over.  My epinephrine is high supine (and I do have pre-syncope while lying down) and super high upright.  

So...I offer this as yet one more thread to consider if you have not already.  Which is the greater likelihood. 

Glad no PCOS for you @CallieAndToby22.  One small mercy.

Thanks for your response. I am just emotionally and physically drained. I have looked up dysautonomia and high testosterone and the dysautonomia international website says that they are not connected and if it's high it needs to be investigated; it's hard because I did reach a place in my life where I'd accepted where I was with my health and I was doing my best, then a new diagnosis appeared and cancer medication destroyed my health in a way that I never could have imagined. 

Telemed appointment with endocrinologist was a bust. She freaked out b/c the testosterone is so high and said it could be ovarian cancer or adrenal cancer then she said she needed to do more blood work in 2 months and didn't feel like she needed to do any scans right now. What?????? She told me I needed to sleep and lectured me and I told her that I take a ton of pills and do everything I'm supposed to and I can't and she starts talking about psychiatry and I told her it was physiological and had to explain autonomic dysfunction. She couldn't understand constant adrenaline and kept calling it anxiety and I kept correcting her and telling her it was adrenaline. She wanted to put me on a blood pressure medication for acne and facial hair and I asked her if it lowered blood pressure and she said YES then proceeded to ask me why that was a problem after I explained OI and POTS. 

8 hours ago, CDNPortGrl said:

Oh dear, I’m sorry to hear that regarding Dysautonomia. I was hoping that wouldn’t be the case. In my circumstance, the symptoms I had previously were replaced by MCAS and everything else that Bartonella graces one’s body with. I seriously hope the POTS type symptoms don’t return. I was under the assumption that when treating Lyme, you can effectively treat the dysautonomia as it’s the underlying cause for some perhaps. I remain hopeful that for many this may be the case 🙂. I haven’t started treatment yet because it has to be done naturally since antibiotics wreak havoc on MCAS. So who knows what will emerge along the way.

Best wishes to all of you in your quest for comfort and better health!! 🥰

My grandfather got a weird tick bite after a hurricane hit us and trees went down everywhere and he was outside using chainsaws and tractor to clean up, he'd been in the woods his entire life but said this tick bite was way different because it was extremely painful and the tick seemed nearly embedded. Anyhow I saw him a week later and he had a massive rash, not a bull's eye rash but a disgusting rash and we took him to urgent care and they tried to say it was shingles my grandfather said, "Do ticks cause shingles? No. Well it's not shingles. A tick caused this." With the testing it showed positive rocky mountain spotted fever and he had to go on antibiotics for about a month which worked thankfully because he was sick and I was scared of any long term chronic affects. I know chronic lyme is different but that's just a weird story with my grandfather. Good luck. And smart of you to see a cardiologist to check on the POTS.