CallieAndToby

Every time I get blood drawn I get very very ill. I just come home and collapse and stay like that for days and it can only be 3 vials. If you have this issue I would suggest getting somebody to drive you after bloodwork. I started getting cabs because I was shaking and ill. Sounds like a horrible experience, sorry you went through that, I know it all too well. I even mentioned it in my UAB autonomic results post because they keep sending me back for more labs and I cancelled today's lab work because I've been so under the weather. For me it has nothing to do with seeing needles or blood, my mother is a nurse, I get saline infusions 2x's week with needles, I did a bone marrow biopsy completely wide awake with no sedation... etc. so the issue for me actually losing blood. I have heard some ME patients say "I feel better after getting blood drawn" and others say they feel absolutely horrific so I really don't have an answer for this issue. I know with polycythemia vera they will take large amounts of blood as treatment and it helps.... odd. 

On 9/9/2021 at 12:04 PM, Rexie said:

Tomato soup usually doesn’t work for me, either. But many soups without MSG and minus those things that trip off IC work for me (both store-bought and homemade). 

Bouillon (MSG-free chicken bouillon cubes) – I use to enjoy making a cup of hot, salty bouillon (hard to find in stores now but, I just discovered, still available online). 

IC-wise, I am really liking the addition of slippery elm herb (one cap at night, 400 mg) for its help with bladder soothing – less time up and down at night and quicker back-to-sleep with quieter bladder and tummy (only one time awake now vs 3-4 times a night with trouble falling back to sleep; last night I slept a record 7 hours and it feels good, but is not, unfortunately, the ultimate fix for underlying major total-body pain & stiffness). 
For serious IC flares I’ll use a little heat therapy pad; warmth in the bladder area really helps end a flare. 

As to ideas for what ails you, with regard to the catecholamine test results, that’s just a snap shot of what your body was doing at that moment. There are quite a few inherited and acquired syndromes of autonomic dysfunction/failure and autonomic neuropathies, plus a possible pheochromocytoma (tumor of adrenal gland, usually causing high blood pressure) that can affect catecholamine levels. But many things can affect their levels, too. I wouldn’t fret too much over your results. For me, I could never get off the things I take, plus coffee and nicotine, for the suggested week-long period prior to the testing the endocrinologist requested (long-shot test for pheochromocytoma). I made it part of a miserable day off my favorite things and found the odds of a catecholamine test shedding light on what ails me to not be worth the downturn in daily functionality required prior to testing. Even if I had a definitive name for what ails me, I’d still have to deal with my autonomic deficits. 

I once had a dietician back in my Lyme disease years; she was so enthusiastic about eating well that it was contagious. Unfortunately, I was so far gone she finally just said “Eat anything you can!” (I practically lived a whole year on tasty cream puffs & milk). Anyway, now with self-study nutrition I still remember this gal’s enthusiasm which encourages me today. Part of my recovery plan includes better self-nurturing. Since dysautonomia, I’ve had to work extra hard at tamping out angry feelings that my body has betrayed me – counter-productive. Giving myself better things to eat and drink is one part of rewarding self-nurturing and is interesting, too.  

It was 24 hour and they had me repeat it. I don't drink, smoke, or do any coffee as all stimulants make me very tired and coffee would affect my bladder and makes me tired. I do think I need scans of my adrenals but they keep telling me to go back for more blood work and I think I mentioned before, getting blood drawn for me lands me in bed very ill for days so I'm not keen on this continuation of being sent to the lab. However the testosterone total free is scarily high, a different endocrinologist said it was in the tumor/cancer range, and then the bioavailable, the DHEA, and these are results after a lot of blood work month after month. I have the awful accompanying symptoms of weight gain, acne, tons of hair loss on my head, hair growth elsewhere, and really extreme fatigue but I don't have ovary cysts and I have normal really heavy periods.

Thanks for calming me down though, my cardiologist wanted me to get off of Bystolic but it ended up very badly and I haven't recovered. The scary part is my continuation of getting worse and worse and all this after being on extreme immunosuppression drug for chronic blood cancer which seems to have destroyed my autonomic nervous system as things were never this bad (I was taken off of it after my WBC count got to an extreme low). I think my cardiologist is correct in immediately referring me to a neurologist to check for a neurological infection but the wait is very difficult. Before taking the cancer medication I was living an okay life, at least I could sit up, walk some, do things I enjoy, but wiithin 3 months on the medication all was taken away. My friends don't even know that I'd already been bed bound for years prior and 10 years homebound and worked so hard to get better and then to be so fleeting. I have never really received proper autonomic treatment so hopefully that will help. I will definitely look into your suggestions for IC but there's more going on like bladder outlet obstruction. I can only drink purified water and vanilla almond milk, I don't eat much meat (mostly pescatarian), and if I eat something heavy in carbs it just sends me into a comatose but one of the things I really enjoy is chocolate (and light sweets), it actually helps me though I know others here have had varying experiences. Fruit was always my favorite growing up but when I was 16 years old I went on vacation with family and we all ordered this fruit plate with yogurt for breakfast and I ate a lot, afterwards I had to stop every 15 minutes to urinate and they ended up dropping me off back at the apartment and it just went on all day so it was then I realized I couldn't eat fruit (I can do mango every once in awhile and pear). 

I've been listening to Ben Howard's new album. He's from the UK and master guitarist. He has a song called "old pine" that came out 10 years ago and it's so beautiful about his love for nature and the woods and the guitar work is so recognizable. My brother tried to learn some of his stuff but everything is in some weird alternate tuning and it's difficult to re-tune old guitars over and over. 

21 hours ago, MikeO said:

 

It's a nice song with great lyrical content written about the passing of his mother. 

On 9/3/2021 at 11:22 AM, Rexie said:

Almost all vasomotor nerves (those causing or relating to the constriction or dilatation of blood vessels) are adrenergic. Two types of adrenergic receptors (adrenoceptors), alpha and beta, are found in the vasculature. The sympathetic nervous system provides extensive innervation throughout the heart, producing effects opposite those of the parasympathetic system. The beta-adrenoceptors are activated by the catecholamines/neurotransmitter norepinephrine and epinephrine. These beta-adrenoceptors stimulate the rate and force of cardiac contractions. The alpha-adrenoceptors predominate in the innervation of the vascular smooth muscle and also in the lower urinary tract. In both cases, the sympathetic nervous system's adrenergic neurotransmitter, norepinephrine, produces its physiologic effects by binding to these adrenoceptors.

Adrenoceptors actively participate in the regulation of the vascular tone, either directly or indirectly (through the release of nitric oxide). A number of sympathetic abnormalities, most notably an increased adrenergic nervous system activity, have been identified as potential causes of high blood pressure. Causes for low blood pressure and orthostatic hypotension have numerous causes. I am so glad you have a sharp cardiologist willing to help you get to the bottom of your issues in a safe and sane manner. 

This article might help you understand this very complicated area of health:  
Mechanisms of sympathetic regulation in orthostatic intolerance, Julian M. Stewart, J Appl Physiol (1985), Vol. 13(10), pp. 1659–1668; 2012
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3524660/ 

As to adding more salt to your diet, I find it’s easy. 
For autonomic dysfunction it is often suggested to increase sodium intake in your diet to 3-5 grams/day. If no improvement is noticed and blood pressure remains stable, it is often recommended that the patient increase sodium intake to 5-7 grams/day. This will help the body retain fluid in the blood vessels to compensate for low blood pressure or excessive pooling of blood in veins. Please note that 1 teaspoon of salt equals about 5 grams. 
I can quickly get 2.5 grams salt (non-iodized – less fizzy nerve feelings) in my morning smoothie (a mix of 2% milk, blueberry juice, and a hemp milk drink) by adding ½ teaspoon salt which adds to my taste pleasure. I use drinks and mixes I like that taste good with salt. I also salt the heck out of food. In the evenings I may have another smoothie. I also eat potato chips (my favorite classic thin chips have 170 g sodium/350 g potassium per 15 tasty chips), pretzels, other fun foods most heart-healthy people avoid like the plague (search “high sodium foods” such as http://know-facts.com/top-sodium-rich-foods.html) bearing in mind what effect they might have on my IC. Sometimes I crave salt and will just shake some into my mouth for a hit.  

Thank you so much for the response! What I find very odd is that I did the 24 hour urine catecholamine testing and my epinephrine was so low it couldn't even be reported on the range and the norepinephrine was at the lowest number possible to still be "normal". I am with endocrinology because my testosterone fluctuates and sometimes it's extremely high and other times my DHEA is high and my bioavailable testosterone is high as well. Endocrinology has no clue about the catecholamines and say it's not an issue but when I google and read other reports and articles from other major medical centers it is definitely something to be worried about and symptoms they list are often: lethargy, trouble sleeping, extreme exercise intolerance, drop in blood pressure. I am often too fatigued to even leave my bed but at the same time it feels like I'm in flight or fight most of the time. I'm having a lot of difficulty with my bladder because it always hurts and I use the bathroom and I don't feel empty. They have ruled out adrenal insufficiency because my cortisol is definitely in the normal range and the treatment for that would be: florinef and steroids but last time I tried those two treatments I had a very bad reaction especially florinef was quite an extreme neurological reaction. I just mention all this in the hopes that someone might have some input because I believe it is all connected. 

I do eat a lot of salt and I drink the salt tablets in water sometimes but it basically tastes like salty water. I'm trying to find an electrolyte alternative but I cannot tolerate any fruit, citric acid, or potassium, so it's a very frustrating situation. Thanks for the link with sodium rich foods, that is definitely something to check out!! And yes I have IC as well I saw on website they suggested tomato soup and juice and I though my goodness that would flare my bladder for an entire month. 

I remember a friend of mine used African black soap in the past so I bought some for very inexpensive on Amazon and it has done wonders. It feels so good on the face too. I would highly recommend. 

I use the dishwasher. I can load it very quickly on a good day and they come out spotless and a heated dry at the end. I can't do them by hand either unless it's just a few. I think some things have to be done by hand like pots and pans, etc. I haven't done the dishes in a long time though. I remember I used to clean the entire house, sigh, I wish I could do that again. 

Here are a couple orange and green photos taken in my yard. Both the mushroom and wildflower are very tiny so bug even tinier. I love finding insects on flowers, preferably wildflowers and I have many insect books that I enjoy looking at; they're just so cool! 

On 8/26/2021 at 7:44 AM, Ashc said:

https://www.youtube.com/watch?v=6NXnxTNIWkc

What's Up - 4 Non Blondes 

That's a great song! She's such an amazing influential songwriter. 

1 hour ago, Sushi said:

Midodrine is a tricky drug and I'm not sure anyone fully understands it. My experience was similar to yours except that I was able to take a second dose (I took one in the morning and one about 2 pm) and it only prolonged the hypertension. I did well on it for only 2 weeks, then I took my morning dose, felt a bit weird (didn't realize it was hypertension) so I took the next dose and spent the next 4 hours or so with the phone in my hand debating as to whether to call 911. Of course, many do very well on it without these side-effects. My cardiologist tried me on it again about a year ago but there was no dose low enough not to give me hypertension. 

On the other hand, testing showed that I had an overly eager parasympathetic system (not the usual over active sympathetic system) and I benefitted enormously from Strattera which increased norepinephrine in the synapses.

Do you have low blood pressure? Mine runs extremely low all the time. I guess that's why my new doctor wants to give midrodine a try. I can't tolerate stimulants at all and Northera made me quite ill. 

On 8/17/2021 at 12:35 PM, Rexie said:

I had the Moderna vaccines last Feb. - felt awful for a whole month. Don't qualify for early booster but not sure I can stand taking a booster when eligible.  Then again Covid would probably kill me. 

I felt bad for a month too after J&J but relief when I did it. Everyone in my new city wears masks unlike where I grew up. Best of luck. 

On 8/2/2021 at 9:52 PM, POTSie78 said:

I saw Dr Cheshire in Jax Mayo's Neuro department.   He deals with dysautonomia but couldn't help me.  He wants me to see their cardiologist because I had an abnormal exercise tolerance stress test. I haven't gone yet because I just lost my insurance since my employer let me go over all this.  Once I figure out getting insurance again I will let you know who they send me to.

Hello just wanted to mention that I saw a cardiologist today who has a great reputation named "Dr. Robert Luke" with Ascension hospital in 2 locations and it went really well. I found him by simply googling and someone left a review saying he is the best with POTS (in Jax) and the most compassionate. He knows the medications well. And when he heard my story about the cancer medication I took that lead to my extreme health decline, he also suspects an infection and has referred me to neurology right away as well as describing that my seizures don't sound like dystonic seizures at all. He has good bedside manner and he takes time with patients because we had to wait an hour to see him but I don't mind because he is taking time with each individual patient which is recounted in his reviews online. The office was run so efficiently as well, I got a wonderful man afterwards who scheduled me right away for my halter monitor but said he'd have to get insurance approval for echocardiogram. 

7 hours ago, cmep37 said:

Midodrine was a great drug for me for a few months, I was able to do a lot more and felt much better on it - it was easily the best med I've tried for POTS. Sadly after about 4 months I started having very bad hypertension after about 4 hours of taking a dose - my cardiologist thought it was a kind of rebound as the drug wore off as if I took another dose the hypertension didn't happen (you can't take it if you are going to be lying down so you can't take a dose after late afternoon).   My diastolic was consistently getting over 120 (oddly my systolic wasn't so bad, it rarely got much beyond 170) and would stay there for a couple of hours before going back to my usual 100/60!  I was very symptomatic with crippling headaches and chest pain when my BP was that high so I was told to stop it. 

I also have some bladder issues (urinary retention and overactive bladder) although nothing like as severe as yours but honestly I don't remember Midodrine having much effect on them - I certainly didn't notice any difference in terms of urinary retention.  The only side effect I really remember was a tingling scalp - it wasn't unpleasant, it just meant I knew when the drug was working! 

I noticed you said your cardiologist wasn't keen on Midodrine - what did your urologist think?  I know my cardiologist won't prescribe me neurological drugs because he says he doesn't understand how they work and he would rather be safe than sorry (personally I'd rather he let me decide if I wanted to take the risk or not).

Thank you for responding. My appointment with the new cardiologist was today and I didn't realize it till my mom told me! But it went quite well as I've just moved and the old one had no idea about anything dysautonomia. Well she just plain wouldn't let me try it and she pushed gatorade and compression stockings a lot and I had to keep reminding her I can't drink gatorade because it's so bad for IC...... However, the new cardiologist today is going to start by taking me off of Bystolic because he said it's a horrible medication for lowering my HR because it's lowering my blood pressure and he was confused why I was on it to begin with! But we're going to do a halter monitor once the Bystolic is out of my system and he says there are much better things for reducing heart rate. In the office just sitting up for 5 minutes today my blood pressure was 106/66..... Not good so that's how he'll start. He also wants to try midrodine next and didn't seemed concerned with the bladder stuff as he hadn't seen it as much of a problem as you mentioned so it's worth a try. He also referred me to neurology after hearing about the seizures because he doesn't think they're dystonic seizures. So overall very good appointment with a cardiologist who finally understands all the medications!!! He also said "we'll try one thing at a time because if I put you on 10 things right now you'll feel like crap." He's all for me getting my saline infusions at a local place but he wants me to increase salt intake somehow so I still need to find something online or a recipe that is IC friendly. 

57 minutes ago, Hippopotsamus said:

I had a flare with the flu shot last year, lasted about 3 weeks. I got Moderna in Jan & Feb and each time had flare that lasted less than 48 hours. I got Covid in March 2020 and am not back to baseline. Keep having relapses every couple months. 

Wow so sorry to hear you had to deal with this nasty infection! It took me several weeks to get over my vaccine and it made all the pain in my body much worse during that time, however, everyone is different. But as I mentioned the Johnson and Johnson is only one shot and no boosters so if it is a bad reaction you only deal with it once. 

38 minutes ago, Hippopotsamus said:

@CallieAndToby22 I also have interstitial cystitis and have had better luck with any of the electrolyte powders that come in the powder packets (that don’t have the effervescence) like SOS  or Liquid IV. I used to drink Nuun daily and it kills me now, the acid and the carbonation. I was hesitant to try something else but was pleasantly surprised that I only had the mildest urinary symptoms with the liquid IV in several flavors: guava, watermelon, açaí berry or the watermelon SOS.

Thank you. Yes I have horrible time with acidity and carbonation. Gatorade just leaves me in misery! I still wish there was something IC friendly with no citric acid and no potassium, etc. I think they could do vanilla or chocolate flavoring, or cinnamon, anything but the fruit. 

I went to UAB autonomic testing lab. So with the TTT, by 5 minutes my heart rate increased by 64 bmp and my blood pressure dropped substantially but blood pressure recovered after going supine. During the Valsava maneuver there was a drop in blood pressure for which the doctor suggests "adrenergic vasomotor impairment". I'm not sure what that means. "Orthostatic intolerance with marked excessive tachycardia during tilt." Findings consistent with POTS and "restricted adrenergic neuropathies in lower limbs." All of the non pharmaceutical recommendations I already do on a daily basis with little help and the medications recommended were: florinef and midrodine but florinef gave me a very bad neurological and physiological reaction probably because I have major endocrine issues being discovered presently and my old cardiologist wouldn't prescribe midrodine because it causes urinary retention and I have severe Interstitial cystitis and bladder outlet obstruction, though I'd be willing to give it a try. Hopefully the new doctor has more suggestions. 

If anyone can explain some of the lesser known ("adrenergic vasomotor impairment") findings that would be great and what medications have helped for you with similar findings? The only medication I really stopped within 48 hours was my beta blocker; I was instructed to stop anti depressants but that would be three medications and I tried to stop 2 and started going through withdrawal. I am pretty much bed bound and cannot sit or stand for very long without fainting and I have dystonic/autonomic seizures. I am also very sensitive to medications and have failed trials to: proponalol, Northera, florinef, desmopressin, stimulants, clonidine, guanfacine, etc. Saline iv's and ivig have been very helpful in the past but I only got ivig for 6 months and I rarely get saline infusions. 

I got the Johnson and Johnson. It's easier because it's just one shot. The woman administering it also told me it had less side effects than her patients who got moderna. 

On 8/27/2021 at 6:24 PM, MikeO said:

My Mum went with Ensure. Not sure if it helped but she did seem to like the benifits.

Well the ensure drinks are like a meal replacement so they have tons of stuff in it that bother me and not really proper for electrolyte. I know they have a lot of vitamins and minerals and things like the B vitamins and Vitamin C make me quite sick. I just need something plain and simple. 

23 hours ago, AMLS said:

Thank you!! That’s a good idea. I have a very sensitive stomach so I think I’ll try more basic electrolyte replacement tablets before attempting the dissolvable 1g of salt type. Fingers crossed this solves the issue! We have no idea why water makes me so sick in the first place, it’s really bizarre 😂 I’m lowkey scared it’ll keep happening and no one will be able to figure it out. I haven’t found anyone else who’s had a  similar reaction.

I'm not sure why you're having such a bad reaction to water either. I also have to drink filtered water bc of my bladder. 

There are dissolvable salt tablets you can get from health food store or specialty pharmacy, that you dissolve in glass of water and drink. This is the only way I can retain fluid. I can't drink loads of water either as it will flare my bladder. A dysautonomia doctor with HPOTS put me on these tablets. 

I need an electrolyte drink without any fruit, citric acid, or potassium as I have severe Interstitial Cystitis and those things lead to flare. All I can't drink is water and vanilla almond milk atm. Anything flavored vanilla would work for me and I do have stevia drink flavor drops. 

I apologize my response above was intended for the original poster. I've been extremely tired. 4 days of ivig is not enough to see a difference, it took about 6 months for me then insurance didn't want to cover it because of the expense. It is a powerful anti inflammatory and I didn't get any side effects but with any immunosuppression I get severe reactions. And it more repairs the immune system and is FDA approved here for certain types of severe immunodeficiency and the autoimmune disease ITP and one other autoimmune disease. 

4 hours ago, p8d said:

How long did you try the IVIG? It took me several months (9+) and a couple of dose changes to see benefits from SCIG (I never did IVIG). I have a positive ANA with markers for lupus and RA plus a positive alpha 1 from Celltrend. I started Plaquenil a couple of years before the Ig and both helped a bit. It’s taken me several years and many, many meds in addition to 4 years of physical therapy (pre Covid) and extreme pacing to not suffer the unrelenting fatigue and malaise. I still flare badly with all the symptoms you listed if I overdo anything even a little bit but the immunotherapy has helped me more than anything else.

I got IVIG for 6 months with saline infusions for autoimmune encephalitis and it inadvertantly helped the dysautonomia but it did not help the fatigue. My fatigue and post exertional malaise is insane! I understand the pacing, In the past if I wanted to go to a movie or a concert I had to rest in bed for a week and then I crashed afterwards. Or I'd swim for 30 minutes and be stuck in bed for 3 days. I just don't know. These diseases are horrible! Autoimmune diseases are horrible for fatigue. I have a friend with MS and it's just horrible for her, I think about her all the time and especially I've only heard from her once since she got covid about 8 months ago. I'm sorry you're dealing with POTS on top of all of this. I still don't have a dysautonomia doctor in my new city and I've been searching there for a year. I did do the plasmapheresis though and I heard so many good things and I didn't feel any different but there was a guy there with MS doing it and it helped him. Edit: I don't know if you know much about IVIG but it's doesn't suppress the immune system, it actually repairs it, it works more like an immunomodulator but since it comes from donors it's in high demand, in short supply, and extremely expensive for insurance companies. My aunt gets IVIG for hypogammaglobulinemia which is one of the few conditions for which it's FDA approved but they've found it helps so many other conditions. 

I'm going to send a pm because I've tried all these things, just for different diagnoses. 

I got the Johnson and Johnson one shot 6 months ago. It was really brutal so I can't do anything else. Really affected my immune system. But it doesn't require any booster.