CallieAndToby

9 hours ago, Elizaangelica said:

Does non-Hyper POTS still involve the release of excessive norepinephrine when standing? My understanding was that with regular POTS the nervous system is receiving the message that there’s not enough blood going to the brain, so more Adrenalin will be released to trigger the vessels to try to constrict further. Probably repeatedly. Is that right?

This makes total sense. I think this is what is happening to me. When I actually do get blood flow to my brain which happened on accident months ago in the ER, all the OCD, anxiety, fatigue, brain fog, went away and I felt better than I had in years and slept well that night. It was a combination of things they did and some things that were accidental but it showed up that that was the primary issue. 

Thanks @Pistol you're very knowledgeable and helpful. Good information to print out. 

On 6/10/2021 at 8:27 AM, cmep37 said:

@dancer65I will definitely try this - all I was advised to do was wee bent over with my elbows resting on my knees and whilst this does help I'm still not empty

 

@Pistolthis is exactly my experience! My brother has nicknamed me Piddles for this very reason!!   I get so irritated sometimes that my brain and body can't distinguish between happy excitement and stressed anxiety - and with hindsight it has bothered me since I was a teenager as during an exam I'd have to go to the loo several times which raised a few questions!  My GP believes that the urgency and frequency is coming from POTS and the incomplete emptying from hEDS - because my bladder is very stretchy it doesn't seem to contract properly and last year I was told I have the start of a pelvic prolapse (at 41!!) although not bad enough to treat yet...  I do pelvic floor exercises religiously as I don't want my nickname to turn into Puddles!!

 

@CallieAndToby22I wonder if I can persuade my GP to let me try this - does it make the bladder nerves less sensitive??  Oddly I have the opposite problem with my bowel - the nerves there are not sensitive enough and I often feel not urge to go even when I definitely do!!  My BP this morning was 85/72 (I'm in a flare) and a med that helped my bladder issues that also raised my BP sounds really helpful! 

Well I never feel empty and feel full with very little urine and it helped with that. But it is known to raise blood pressure if you can handle vasoconstriction. You should look up the official website and read about it. Edit: I know it's indicated for OAB but a lot of IC patients get help from it. 

On 5/28/2021 at 4:42 PM, Bobannon said:

Oh it’s about to get embarrassing, but I really like Words with Friends (Scrabble), Redecor (silly interior decorating game), Tetris, & Podcasts (Killer Role, The s*** Show, This American Life, 2 Dope Queens, Revisionist History, My Favourite Murder, Mad Dogs & Englishmen). I also use Planta to help with remembering to water my plants. 

Tetris is fun. The only show I'm watching is "pitbulls and parolees" I really love the work they do for well deserving dogs. 

I like to get on YouTube periodically and I mainly watch pet rescue videos and music. I had a photo assignment (just for fun with group online) to take a picture that represents a band and I ended up doing Heart and then watching them on YouTube has been a blast. I also just watch anything inspiring and encouraging, social media was too stressful. 

On 6/8/2021 at 9:13 AM, toomanyproblems said:

 

Yes, you're right. I forgot about adrenal hyperplasia and Cushings. PCOS seems not very well understood at all levels.

Thanks for the response. Yes I'm very dismayed right now the PCOS makes sense (random weight gain, acne, hair) but I just didn't expect one more diagnosis....... 

There was a young guy that was bedridden for 10 years and he figured out what was wrong himself but I think he had a degree that leant itself to that discovery, but he said he would be lying down and put a sheet of paper on his chest and it was flapping wildly from his HR so high and it turns out he had tumors inside of his adrenal glands. He got doctors on board then they said, "well we don't know how to do surgery" and he found one surgery done on rats using a spoon to remove it and they went ahead with him and he was cured. I forget his name but he worked with a doctor at UAB who is now retired and he also said his grandmother and mother were exhausted all the time and in bed all the time so I guess I'm mentioning this because tumors outside and inside of the adrenal glands are also known to cause problems but in his case it seems hereditary or maybe genetic? Very sad what he went through but glad he's better. 

Myrbetriq a bladder medication helps with nerve feelings in the bladder but also is a mild vasoconstrictor so I've heard from a lot of IC patients that is raises blood pressure and I personally would recommend this medication.  

My bladder is awful and nobody ever told me it was connected to dysautonomia so I'm still waiting for autonomic help but I think that will help me be able to empty however I'm in pain all the time b/c of IC. I have to follow a very strict diet. 

19 hours ago, toomanyproblems said:

I would think a 24 hour urine for catecholamines would be easier for them to do and more available in labs than a sitting (or lying) and standing norepinephrine level. You may not catch the norepinephrine increase if it's too limited but if you do, it tells you something. So a negative may not rule out increased norepinephrine but if you get a positive you have an answer.

As to the OP's question: I have longstanding primary adrenal insufficiency (Addison's) for over 30 years. Since my adrenal glad is at least partially destroyed, I asked my endocrinologist why I was still producing adrenaline. She said that part of the adrenal glad was always preserved in her experience. So it appears unless you have pheochromocytoma, which untreated might advance fairly quickly (IOW you wouldn't have it for many years without knowing), I'm not aware of any other primary adrenal disorder that would cause increased adrenaline.  

Thank you for the informed response it does seem like a 24 hour urine would be the best way to test. 

Well when I had the labs drawn for testosterone it said that adrenal hyperplasia was a possibility, CHP, so that is a primary adrenal disease that causes the adrenaline. There is also "adrenal PCOS". I will keep posted when I get full testing back. 

20 hours ago, CJ65 said:

Ok got it. The catecholamine tests are very hard to get right at lab. The first time I had them drawn I talked a very nervous nurse through how to do it and thought we were golden…until I found out she put it in the wrong tube! Waiting to see an autonomic specialist feels like an eternity and IS with the backlog, hoping you get some answers and relief soon. I’m guessing by your low BP that an alpha agonist may not be what you need so I apologize for suggesting that. The good news is there are so many things still to try. 

Thanks. Yea the women had no idea at the lab how to do this testing and I really didn't either. But I can't sit or stand more than 7 minutes and I can't walk around so I don't know that this is an option. After I attempted to at least sit for 30 minutes they told me I was free to go and I said, "you have to draw blood again" then after awhile they had me lay back down to draw blood, it was a nightmare. But like I said the hospitals here really only cater to their employees getting to use their labs with the expensive insurance.   

16 minutes ago, CJ65 said:

@CallieAndToby22 gosh that sounds so awful! Forgive me if you already said this but have you had catecholamine levels tested? I can’t remember if you said you have hyperandrenergic POTS but those surges you mention are common with HPOTS. And have you ever been on one of the alpha 2 agonists like Clonidine or Guanfacine? They are so integral to controlling adrenaline/noradrenaline surges for me personally. Other adrenal work up might involve a urine VMA test, imaging your adrenals to rule out pheochromocytoma etc but maybe you’ve already done all that when you were first diagnosed? 

I wasn't able to do the testing properly because the lab did it incorrectly. I live in a small city and the hospital only accepts one insurance, not the one I have. I need a lot of testing, all I've ever had was a TTT. I tried guanfacine and it made me very lethargic, fatigued, caused terrible insomnia but it did help the issue. I have very low blood pressure so it made that a lot worse. I hear mestinon can be good for this but I still don't have an autonomic doctor, I'm on several waiting lists for a long time.

2 hours ago, Amy Kann said:

I had the adrenaline issue twenty years ago when my POTS was severe. It was the worst part of the illness. I went on gabapentin 400 mg 3 times a day. It has felt sort of like a central nervous system soother. It’s off label but it was a miracle cure for me.  I built up super slowly-100 mg at a time. Too fast isn’t good. It stopped the adrenaline issue for me. I’ve never gone off it even though my POTS got better- because the adrenaline issue was so hideously unbearably life altering, that I’ve been afraid to risk having it return. I feel for you. I hope you continue to try ways to treat the adrenaline. I think there is an answer out there for you. All my best wishes. 
Amy

Thank you for your response. I have severe POTS. Seems like the adrenaline does have in big part to do with dysautonomia. I have some gabapentin but didn't try it for long b/c I found it to be sedating. It seems worth a try b/c I'm in pain as well. Thank you for your response. 

18 hours ago, cmep37 said:

My cardiologist was very keen on Ivabradine and touted it as a game changer for a lot of people like me who couldn't take other BBs because they lowered BP too far.  My Bp runs low normally (100/60 ish) so when I took propranolol although it reduced my standing HR by about 20 BPM it also dropped my BP into the 80/40 range which was just as bad if not worse than the 140+HR.   Ivabradine did not do this but despite still being POTSy in the evenings my resting HR was high 40's low 50s - 3 weeks of the lowest dose of Ivabradine and by 4pm until 8-9am it was mid to high 30s which I just couldn't tolerate.  It's never quite gone back to how it was before Ivabradine but is now low to mid 40s in the evenings and at night which isn't pleasant but is tolerable.  If you don't have that low HR in the evening problem (and to be honest I've not heard of many POTSies who do!) then I'd definitely try it - here in the UK a GP can prescribe it, you don't need a consultant's prescription although the situation in the US is probably different.  

Thanks, good information. Yea the blood pressure thing is very tricky.

So back in 2007 I went through a period of remission and then in 2008 I started having adrenaline / flight or fight all the time, 24/7 and it lead to me being bed bound. I couldn't sleep at all during that time and I was just put on massive amounts of sleep meds trying to finish school. Well fast forward to last year, after taking the cancer medication which was just a massive immunosuppressant that I took last year for 3 months, the adrenaline has started back and it was on and off when getting off of it but now I'm bed bound and the adrenaline is 24/7 and I can't stop it and I'm too sick to do anything. I'm in perma crash and exhausted and can't sleep. The beta blocker doesn't help, klonopin doesn't help, increasing sleep meds doesn't help. I will be getting some endocrinology labs done soon. With my testosterone as high as it is I believe this is some disorder of the adrenal glands, PCOS just doesn't fit, but reading about overactive adrenals on the NIH health website and all the conditions just fits. I'm just wondering if there is something I can do in the mean time just to be able to make it to appointments etc. to calm down my adrenals? I do have a psychologist I talk to on the phone but he's just a moral support at this point. Saline iv's help which isn't an option right now. Recent labs did show my folate is very very low and I do have the MTHFR genetic mutation, so I'm thinking about starting on methyl folate + B12 again just get side effects (just mentioning it b/c don't know if it has something to do with all of this). Maybe I'm posting in the wrong forum, just let me know, I've deleted all social media at this point. 

On 6/1/2021 at 2:39 PM, cmep37 said:

I've not tried it so can't comment on how it affected BP but I wondered if you had considered Ivabradine (Corlanor) instead - it has no effect on BP and is supposed to help with fatigue. I couldn't take it as it reduced my already low HR but I know several people who had good results with it.  

Seems like something I'd like to try. Bystolic even lowers my blood pressure.

On 6/3/2021 at 8:37 AM, cmep37 said:

@Knellie I think a lot of us have been where you are - I have left many appointments with so called "experts" in tears because they just wouldn't listen to what I was telling them.  One particular highlight was the Cambridge-educated cardiologist who spoke to me for 5 minutes and told me I didn't want to work because I was too lazy (I had specifically said how much I missed my job) and therefore my mind was creating these physical symptoms!   Keep persevering - you will eventually find someone who will believe you.  I would get myself on a list to see a good POTS doctor in your state, what seems like ages on the waiting list will pass and at least they will have had some experience of treating patients like you.  

Ouch! That's a horrible thing to say to a patient. I once had a doctor tell me if I got a "boyfriend" I would be happier and okay, lol. This was years ago but I was too sick to do anything so.... 

Yea I hear you. My ears have been itching for about 10 years and I saw so many ENT's in the past and they would look in them and just say they didn't see anything. They put me on antibiotics and ear drops but that never helped but now I'm wondering, why not a biopsy or why not consider fungal or yeast? Now I've got MRSA and sores in my ears and the itching is unbearable....... Can't believe he said "runny nose" to you, I feel like they get out of med school and they are content knowing basic basic stuff but when it comes to complexity I have yet to find a doctor that wants to look outside of the box and actually do some research and I feel like patients like you and I that are beyond sick are left to do research.  Anyhow, I don't know if me venting was helpful at all but I understand and feel your frustration and I'm so very sorry. I have the headaches, ringing in ears, and my jaw keeps popping as well........ 

I didn't do well with guanfacine. It made me extremely exhausted and tired even though it stopped the adrenaline. It also gave me horrific insomnia. I have low blood pressure issues and it made my blood pressure much lower and I would feel faint just moving my head. I'm really sensitive to medication so even at 1/4 of 1mg I was having these symptoms so I had to discontinue.

I think @Pistol has the best advice. But they usually base it off of half life of the drug. 

11 hours ago, carissalovesbooks said:

Which bb are you on? Any contraindications with that and the klonopin?

Bystolic. And they are fine together. My pharmacist would flag me if otherwise. 

Klonopin definitely helps with my conditions as well. I'm not sure about the HR but I had to get on a beta blocker to lower my HR so it didn't help that enough in me either. 

2 hours ago, Pistol said:

Huh - pretty much instantly! I run the fist 200 ml of my infusion wide open, and it helps right away. I can give you an example: not too long ago I had overdone things and my port was not accessed ( I need to give it 2 days of rest without a dressing b/c I am allergic to the dressing ). I ended up in bed, barely able to stand, with chills, shivering, ice cold hands and feet, unable to find words or think straight, BP and HR high. the nurse came to access my port and ran the fluids wide open. Within just a few minutes she was amazed to see my color turn from ashen to pink, I could speak and laugh, my feet turned from white and frozen to pink and warm ( you could SEE them releasing the vein spasms ), my HR and BP turned to my usual slightly on the low side and I could get up without even feeling dizzy. 

I get 2-3 liters a week and use them preventatively, not only to treat the flares. So I rarely get bad anymore, unless I am sick or stressed etc. Prior to the port and home IV fluids I had to be admitted to hospital for overnight fluids more often than I can even remember, every 6-8 weeks for years. I was always on telemetry and the immediate response to the fluids was always caught on monitor, and my vital signs also reflected this in my chart. It baffled many docs who thought drinking fluids was all I needed. 

Thank you your response helps a lot. I too am always told to drink fluids all day long and I wonder how many times I have to tell them I'll be going to the bathroom all day long. 

The person I live with told me it wasn't possible for me to feel better soon after the drip starts, but I do. Just wondering about others' experiences. 

55 minutes ago, sitcedar said:

Also, are you getting enough sleep, water? Not eating too much sweets? All of these could contribute to acne breakouts as well.

My testosterone is extremely high and they think Have either PCOS or ADRENAL hyperplasia so with those two disease one of the main visible symptoms is acne. 

7 hours ago, Pistol said:

Hello @starshine - welcome to this forum! - Yes, insomnia is unfortunately a common problem in untreated POTS. It seems to happen due to adrenaline levels not dropping to accommodate REM sleep, as it normally should happen. That is why you wake up with racing heart etc. For me this was a problem for years, and I did not find relief until I had to become disabled and also had found proper medication regimen. What sets insomnia off for me is overdoing things and becoming too stimulated, whether this is by exercise or mental or emotional stimulation. I find that every time I push myself to do more than I know my body can take I pay with insomnia and bedrest. So finding a healthy balance of what you can do ( rest and activity carefully balanced to your personal abilities ) and trying to find a healthy routine were a necessity for me. Only once I had to stop working and was able learn what that looks like for me did I find relief. 

For me this involves a lot of rest but also exercise ( rowing machine and mild aerobic exercises as well as household chores ), having the same daily routine ( up at 5, to bed at 9 ) and - MOST IMPORTANT!!!! - stopping any activity as soon as I find it is getting too much. This may seem unrealistic to you but it is what needs to be done for me in order to be able to stay on top of my symptoms. 

When I am overstimulated and normally would not be able to sleep I take a low dose of Lorazepam, this helps me to go to sleep on those nights. But due to it's addictive properties this is only for really bad days, I use it maybe twice a week. 

Many members on this forum are suffering from insomnia and try different methods like no electronics in the evening, no heavy meals after 6pm, light and noise cancelling devices etc. Some people take melatonin or herbal teas before bed. You might search the forum for some posts about this subject, there have been many posts that might be helpful to you. I am so sorry you are having this very difficult to live with symptoms, but know that it can be overcome. And talk to your doctor about it. When we don;t sleep our symptoms get much worse, b/c we are in constant stress mode. 

This is great advice, thanks. And it does explain why I'm in a bad rut. There have been some major emotional challenges in my life and situations where I've been pushing myself to the brink which leads to more and more adrenaline and I think you're right that that in itself prevents sleep. I went to the dentist a week ago and they didn't even have reclining chairs and the feet didn't lift and it was like 2 hours of being upright and near syncope and I crashed bad after that. Sigh. 

3 hours ago, starshine said:

Hello, everyone! I'm new here. I just got diagnosed with POTS back in January, but I've probably been dealing with it since at least 2019. Things took a turn for the worst when I finally got my diagnosis, and I've been barely able to walk around my house and occasionally run errands. I'm already on a beta blocker (propranolol), and it's definitely helping. Without it, I would be bedridden. However, I can definitely tell when it wears off. I've tried my best to integrate other changes to manage my symptoms, but I was already dealing with other disabilities before my POTS got 1000x worse. So, it's been hard.

Now, it's been making it impossible for me to sleep. Seriously, I'm writing this on less than a full hour of sleep in the last 36 hours. I feel exhausted, but it doesn't matter. I either can't fall asleep, or I can't stay asleep. I get woken up by an elevated heartrate or some other POTS symptom. I've always had issues falling asleep (though not nearly to this extent). But ever since I was a kid, I was capable of sleeping through the apocalypse after I actually fell asleep...until now, obviously. So this is completely abnormal for me.

As you can imagine, the lack of rest is exacerbating my already pretty severe symptoms, so I would greatly appreciate any advice that y'all might have!

I'm having the same problem. Haven't slept much in 2 weeks and feel like I'm constantly running on adrenaline. I have to go to a mayo in Jax appt in 10 days guys and I'm not sleeping or resting and I crashed today after filling out one form. Any suggestions? They don't feel like they can reschedule. My biggest issue is I don't feel sleepy at night but I've taken melatonin and a slew of medications for years. 

2 hours ago, SnowBird312 said:

Hi, this is my first time posting in this forum so I hope I'm doing it correctly!

I developed POTS at the beginning of 2020 after a bout of an unknown viral illness. From then on my symptoms worsened until finally in April I had to quit my actice factory job and drop out of college. I'm currently 22. I was diagnosed with POTS & SVT (AVNRT) in July. I underwent a tilt table test and ablation in September. I was then put on Metoprolol.

I had a fairly rough recovery and was fairly close to bedridden until January. I had awful tremors, dizziness, brainfog, fatigue, and of course tachycardia. My heart rate would shoot up between 140-170bpm upon exertion. In February I did a trial of Ivabradine but it only made me dizzy/disoriented and fatigued. I felt weighted down.

Since then I haven't made much progress. I'm on the metoprolol, I drink the recommended amount of salt/water/electrolytes  (although the salt seems to gives me migraines sometimes). I no longer have brainfog, nor am I dizzy. I get a full 8 hours of sleep each night, 3 meals a day, my diet is high in protein low on carbs. But, I still cannot do anything because of my high heart rate and fatigue upon exertion. I've started walking on the treadmill for a few minutes at a time, slowly. My heart rate gets up to 150-170. 

I went through autonomic testing, my QSART and Valsalva came back normal. My TTT obviously did not, my heart rate hovered around 170bpm. My blood pressure was/is normal and stable. I've never passed out. I don't have comorbities, unless you count SVT as one. I can walk around the house okay, when I'm laying down or sleeping I don't have issues. Is anyone out there like me, or have ideas? I find my case kinda strange. My next appointment with my doctor isn't for three months.

I'm getting tested for sleep apnea in three weeks too, not sure if that could have an impact on my symptoms if I do indeed have it.

Just wanted to say I'm sorry. They gave me Bystolic to lower my HR and it was successful but I have very low blood pressure and it made it even lower, sounds like that wouldn't be an issue for you.