CallieAndToby

12 hours ago, Ashc said:

Hey, all! Thanks for your responses. I'd say it is in our 30s where feel so much pressure as we are nearing 40s. We get to look back at the opportunities we missed and all the hardship. And now social media is brainwashing us, making us feel that we have a bad life. It's hard living nowadays. I think everybody should address mental health, maybe it should be mandatory for schools or offices? The stigma maybe stopping people from admitting they need help, right? Has any of you had experience with therapy. How did it go? Did you benefit from it?

I've been in therapy for the past 15 years. I really didn't find the right therapist until the past 5-6 years. I didn't make any progress with many others. I developed OCD out of nowhere years after getting first ill and I went to the University OCD clinic and made a little progress and have followed up with my current psychologist; he mainly helps with my health stuff, he's pretty incredible. He got me a connected with a nurse case worker with my insurance to help with everything. We don't really talk about OCD much any more just what I'm dealing with atm. There are people in my family that refuse to have any understanding of the situation with my health and he has tried talking to them but only so much you can do. I wish there were alternatives to the current social media.

With the help of saline iv and abdominal binder I was able to make it to the beach for a bit. I laid down mostly on a beach blanket but hey that is totally normal because everyone else is doing it! Post exertional malaise today but I needed some bit of sanity and calm. Some of the photos I'm attaching are unedited but I was able to bring my camera and take some photos. 

I have a lot of friends with very severe ME and dysautonomia and klonopin or Xanax seem to be the best at helping with PEM. I found out accidentally spending a year in bed and deciding one day just to take a little bit and it really helped. Whitney Dafoe is probably the sickest ME patient and once a month he takes a benzodiazepine and he's able to communicate b/c it clears up brain fog, they don't know why. 

I agree with @Pistol that supplements and even vitamins can have serious side effects! I think I've had worse reactions to supplements than actual medication. With that being said things that have been pretty safe for me are: Vitamin D3 and Omega 3 gummies that also have DHA, EPA, and a bit of turmeric. Both vitamin D3 and omega 3 fish oils increase cerebral blood flow but just make me feel better. I take a magnesium supplement at night as well and it helps with constipation. I have the MTHFR genetic mutation and I was prescribed L methyl folate, methyl B12, and niacin. I can't take normal B12 I have a weird reaction to it and makes me tired. Niacin can cause flushing but I bought a kind that doesn't do that but niacin is also supposed to increase cerebral blood flow. I wouldn't recommend that latter supplements like L methyl folate until you are tested for the deficiency and/or mutation. Vitamin C makes me really really sick. It's really unfortunately a trial and error thing and finding the right dosing and we all react differently. 

31 minutes ago, Jyoti said:

Just wanted to follow up with the occasional encouraging news: my second Pfizer was almost entirely without side effects.  I am ten days out from it now and really just had a sore arm and slight extra tiredness the day after.  Loads of water and salt.  Beyond even the prodigious amounts we must usually take.

That's good news. Congrats. 

On 4/21/2021 at 10:08 PM, tjf0220 said:

I am suffering a possible flare up from taking a round of prednisone and i’m trying to decide if i agree that this is an autonomic flare up or something else my doctors are missing. Has anyone ever had severe anxiety from digestion? eating any food or taking any medication? i can’t figure out what’s happening to my body? 

I've been on iv steroids and oral prednisone and both made me insanely ill. Luckily when I stopped prednisone my symptoms went away. 

17 hours ago, HOTLIKEFIRE said:

I’ve been suffering for months not officially diagnosed with an auto immune disease yet but my primary is convinced it is ... so as you can imagine my low grade fevers and all the other unpleasant daily symptoms are bad enough but my question is , are there other people who have got the shot ,even with these daily symtoms  ?????
just wondering if it’s safe , Because out of all the doctors I’ve spoken to nobody will give me a yes or no answer they say it’s your choice when I ask if I should get the vaccine ....

I feel like I really need this vaccine as I also have leukemia....

I have a very rare blood cancer and right now my oncologist is saying no where-as my PCP was saying yes. I say speak to your oncologist. They keep telling me it's my decision but everybody is reacting to it differently, one of my completely healthy friends got a shot and ended up bedridden for weeks so at that point I'm just going to wait till I see the new oncologist at Mayo Clinic but that's not till July. I'm assuming you have dysautonomia too? After 3 months of a cancer treatment my Dysautonomia got 10,000x's worse and nobody knows what happened. Just thought I'd ask if you had autonomic dysfunction before or after and if immunosuppression treatment made it worse? Thanks in advance. 

I got sick at 17 after mono and also developed severe bone paint age 16 which they attribute to having an MPN (myeloproliferative disorder). I really didn't have stress before that, my health problems and the way I was treated by my peers, some doubting family, my church, doctors calling me a psych patient, became my stress. My father forcing me to go to college (only finished 2 years in 4 years of attendance) even though I was extremely ill was stressful. 

Social media is also terribly depressing and stressful for me personally. 

On 5/11/2017 at 5:22 PM, Elisabeth417 said:

Hello All!

I'm wondering if this thread is still active and how everyone is doing.  I, too, cannot seem to recover from being bedridden (1 1/2 years now).   I can stand up for about 3 minutes max just to go to the bathroom (thankfully!) and then I crash.  I have seen so many doctors and have had many tests and no one knows what's wrong with me.  I feel it's a combination of Dysautonomia, Adrenal Fatigue,  Extreme Adrenaline, Hormonal Problems, Panic Disorder, Migraine Headaches and Chronic Fatigue Syndrome.  Yet, no doctors agree with me and will give me no help whatsoever and just tell me to exercise which leaves me totally exhausted.  I've even been referred to Stanford Dysautonomia twice and they have denied my case without even seeing me.  I've had MRIs, MRAs, CATS Scan, EEG, blood tests, urine tests, etc., etc.  The only thing that I have tested positive for is SIBO, but that doesn't explain all of my maladies.  I've actually been ill for 6 years and bedridden for 1 1/2 years now and I just keep getting worse and worse no matter what I try--graded exercise, salt loading, rest, different diets, caffeine, no caffeine, much more.  I seem to have tried it all with no results but downhill.  I'm so upset that no doctor even takes me seriously.  While bedridden, I have so many other symptoms, too, besides "just" not being able to get up--digestive disturbances, brain weirdness, tingling, ringing in ears, tight body, extreme heaches, body aches, low body temperature, too hot, too cold, can't sweat, too much sweat, deep depression now about my situation, just everything.  Is there anyone still out there that I can talk to and who is open to going through this "journey" together?  Thank you so much.  I find this website so hopeful and inspiring!  Thank you to anyone who answers.  Truly,  Elisabeth417

Hi Elisabeth, wondering if you ever got help or answers? I'm in a scary situation myself and my doctors don't care either and I keep getting rejected from different places as well or recently referred to the wrong physician! 

Dr. Coglan was a special physician that solved the unsolvable, I wish many more of these doctors existed. 

It happens to me every time I try to sleep or rest and when I wake up it kicks in. I'm supposed to see an endocrinologist so I'll update on that. 

It collects in my abdomen badly, I look pregnant! Ugh! So if someone knows of a good abdomen binder pls send me a pm, I bought one and it was terribly uncomfortable and didn't fit. Edit: For me it's also fluid, if I drink a lot or get saline iv my abdomen really swells. 

1 hour ago, p8d said:

Thanks to everyone posting about this. I had my first Moderna vaccine last month and the second is this coming Sunday. I had increased fatigue and a sore arm for a few days. I increased my supplements per Dr Klimas before the first shot. I spoke to my cardiology NP this week and asked about her dysautonomia patients responses to Covid and the vaccine. This is a clinic that treats 300+ dysautonomia patients and she said that none of the patients that had had Covid have returned to baseline and that she only had one person question a flare induced by the vaccine. 

Good to know. I'm already bed bound and getting worse so I'm really scared. My doctor's want me to get it though. 

1 hour ago, Jyoti said:

I had a pretty severe flare after dose #1.  I was actually ok for a day, then a couple days of 'normal' side effects, and then POTS went to town.  I couldn't get out of bed or even sit up in bed for about 8 days.  It was absolutely awful.  

I just saw a cardiologist who is also a dysautonomia specialist who also happens to have a wife with POTS. Since my next shot is scheduled for tomorrow, I asked him if he thought the first round could have provoked such a big reaction and before I could get the words out of my mouth, he was nodding and saying, "Absolutely.'  Now, I haven't seen much from anyone else who had such a huge flare after Pfizer, but I asked him if he had seen it and he responded in an emphatic affirmative and mentioned that his wife had actually had exactly the same reaction.  He encouraged me to go ahead and get #2 (I was not sure how wise it would be) and just to load up on salt and hydration beforehand and be vigilant about water drinking afterwards. 

My doctors were going to discuss whether or not I should get it done. Thank you for your response. 

On 4/14/2021 at 4:17 PM, Teodor said:

 

I was on 20mg propranolol (10mg morning, 10mg night) for two weeks. I wanted to try it because my old beta blocker doesn't do much. But instead of making things better the propranolol made my pots worse, so today I had to switch back again to my old beta blocker (Bisoprolol /Concor) 2.5 mg that I am on for two years. I'll call an endocrinologist tomorrow and make an appointment to check my blood hormonal levels, I hope they show something. I'll update my post with the results when they're done.

Thanks again for the info and support!

My mother asked for my hormones to be checked back in January and they are all out of whack, some of them so high and out of range but nothing was really done about it until today, I had a telemedicine appt. and asked to be referred to a specific endocrinologist. I am wary of the doctor's in my city but he has outstanding reviews. I will keep y'all updated too. 

Wow, we have very very similar stories. I got sick at 17 too and prior to that I was super athletic and musical and sociable and tons of water sports and hiking living in Florida. I understand much of what you describe. I've been in some long term relationships but my health is difficult or the person can't handle it. My high school sweetheart and I dated for 4 years and always talked marriage but one day he's like, "I thought you would get better and you're getting worse" and that was it. And I've gotten better and worked really hard at something else and then now I'm bed bound and like you said, none of my doctors care at all, which means I'll have to move in a very sick state just to get medical care. My family is non existent and I don't have many friends. I really understand what you're talking about and I understand feeling "robbed". I won't even get into how doctors treat young females but it's really concerning and scary and there are memories I'd like to shake that I can't. I decided at a young age I wanted to do something in music so started off singing at age 6, then piano lessons, then wrote my first song at 10, and just practice practice which was actually fun for me, extensive study in music theory, learning bass guitar and acoustic guitar; my goal was to become a music therapist and I fell in love with someone and it was like over night I ended up bedridden for a year then homebound for awhile and this was early 20's. 

What I do right now is focus on the things I can do. I listen to some music here and there and watch music shows just to get a taste of what I love. I can still edit photographs from bed sometimes so that is enjoyable for me, I did freelance photography for a period and even if I go outside for 5 minutes in increments during the day with my dogs I will take some photos or go through my old archives. I watch A LOT of animal rescuing stories online that are really only 5 minutes long which just makes the world seem like a better place and makes me smile. I did join a website that isn't running any more years ago when I was homebound and it was for under 40 chronically ill and most of my current friends I met on that website and though we are scattered all over the country, there is an understanding b/w all of us and encouraging even if it's just sending a text or card. I have not found social media to be helpful at all, everyone wants to argue over things and I ended up leaving all that behind b/c it caused so much stress. I do what I can for my dogs, luckily they are super old and low maintenance. I do have one local friend that I've known since sophomore year of high school and he's very understanding and we talk on the phone sometimes and text. Doctors confuse our depression as a primary issue but it's just secondary to feeling so bad all the time. I used to sit at the beach and feel overwhelming peace so I think it's whatever brings you some joy and peace. 

I don't know. Mine tend to get worse at night. 

Could it be hormonal? Or medications you take? 

When I got sick with dysautonomia I later developed OCD. Horrific but I went to a clinic and worked really hard to get better. But as I've declined drastically these past 6 months the OCD and anxiety are horrifying but they are physiological like you said. I was treated as a psych patient for years starting as a teen before being properly diagnosed and nothing ever helped. It's odd but the OCD I have is only focused on my bladder (I have IC) and my sleep problems but I mean IC is so so so bad who wouldn't be frightened? And these constant adrenaline surges. Saline iv's really help me more than anything to calm me down. I feel your pain, there has to be a connection and I hear a lot of people with POTS complain about anxiety. It kind of hit me all at once after contracting mono, I was "normal" before the mono. Music was always my therapy but I can't even play instruments, sing, write songs, or even listen to music now so I'm feeling sad about it all. My dogs definitely help me. I have a therapist but we can only talk for 15 minutes before I crash badly. I'd like to hear what others have to say. 

19 hours ago, Pistol said:

@CallieAndToby22 - I had to stop my meds 3 days before my TTT. Granted - I was not on many meds back then but it still got me sick as a dog without them. I am not sure if I could do that today - I am on a lot of meds that should not be stopped abruptly. Not sure about yours. 

Oh it was horrible, I just got back on them and I feel terrible. It's very difficult. 

Alright so many people are wondering about this, so I'll give an answer. 

We never got a return phone call but I emailed the research team (accidentally) and they told me to at least skip the evening dose but preferably they want any medications/supplements affecting the autonomic nervous system (blood pressure and heart rate) out of your system. So going by the half lives of my meds I needed to get off of them for 3.5 days before any testing. One of them had a really really long half life so there wasn't anything I could do but I still discontinued it for testing purposes. 

8 hours ago, Pistol said:

@CallieAndToby22 - has your urologist ever considered an indwelling  urinary catheter to help with your symptoms?

I'm going to look it up. He kind of just went through all the different treatments like botox and interstim...etc. Edit: Ah I have seen different people at the urology place with that but it was never discussed as an option for me. Thanks, something to bring up. 

On 4/2/2021 at 2:23 PM, merkat30 said:

What Is sleep 😭😭 I have hyper pots mast cell activation syndrome seizures and not fully diagnosed erthymilagia nightvtimes are horridous I also have the palpitations heart jump on falling to sleep it scare me it horrible .pain on night is horrible .

I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? 

On 4/2/2021 at 9:27 PM, yogini said:

Perhaps a doctor could work with you to figure out why your heart rate is so high. 90-120 lying down seems quite high.  I have had this very rarely but can’t imagine every day..If you are diagnosed with dysautonomia I am not sure adrenaline is the cause of it.  For example if your blood pressure is low your heart might be beating faster to try and maintain it. I suspect you will sleep much better when that is sorted out.

Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. 

On 4/5/2021 at 8:16 AM, cmep37 said:

I take Trazodone for sleep issues (I take 150mg every evening) and it has helped me a lot.  Pre-Trazodone I wouldn't sleep until 3 or 4 am and then wake every 30-60 minutes with my heart racing and it would take me another 30-60 minutes to get back to sleep.  Now if I take Trazodone by 7pm, I get to sleep around 1am, wake up each hour for the first couple of hours but get back to sleep within 15 minutes and then actually sleep for 3-4 hours without interruption!  

Trazodone is a good medication for sleep, I take some at night. 

23 hours ago, Ashc said:

LOL She looks conscious. So adorable.

She's usually full of fluffy fur but it's summer time in Florida and it's better that she has her shave, hahaha, but she hates it aesthetically but like sit for the coolness. 

23 hours ago, Ashc said:

Wow. How small are the black and white eggs?

They're actually real eggs so just a normal sized egg. 

On 3/31/2021 at 10:44 PM, MomtoGiuliana said:

Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way.  But I believe that I am and this is the first I have heard this.  I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate.  It never occurred to me this was something documented in other people!

Essentially all vasoconstrictors can potentially decrease cerebral blood flow in *some* patients. Every stimulant I've ever tried makes me very ill. I even tried Northera and I got very dizzy, fell asleep, woke up super dizzy and faint. Vasoconstrictors also make it very hard for me to urinate and I already have bad IC. They help some people and other it hurts them and Northera never even helped my blood pressure...... It would be nice to discuss what patients do when we can't tolerate stimulants, vasoconstrictors, but need increased cerebral blood flow. But again, we're all different and the autonomic nervous system and its dysfunction and malfunction are very complex and complicated; I doubt we understand much about it, so whatever works for you is fine but if it doesn't work that's something to be avoided. I actually do fine with chocolate but it has to be low on cocoa (milk). A study on caffeine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2748160/ . 

I was blessed to sit outside the other day for a little bit and got a couple shots. My border Aussie is truly camera shy and furious about her summer shave. lol.