Clueingforlooks

33 minutes ago, JennKay said:

@Clueingforlooks - I was started on metoprolol when my symptoms first presented last summer. My experience sounds similar to yours. At first, the metoprolol made me very tired, but I didn't have any issues with adrenaline surges. After about 2-3 weeks on metoprolol I started getting adrenaline surges, even when I upped the dosing. I elected to stop taking it, which wasn't a fun experience either. The metoprolol helped with my PVCs and PACs, but I think it dropped my BP too low and as a consequence my sympathetic side went into overdrive. I was offered flecainide but after reading the black box warning, and b/c of my experience with metoprolol, was too afraid to try it.

Sorry to hear, it's very frustrating. Have you tried other beta blockers? 

It does seem the same for me the longer I take them the more the sympathetic side kicks in again to compensate for low BP.

Just don't know what to do to stop that happening as I can tolerate vasoconstrictor like midodrine. And I'm already on fludrocortisone.

When I was initially put on flecainide I was monitored in hospital for a couple of days but they didn't really tell me how bad it could be! But when I found out I still wanted to take because it helped my hyper side a fair bit. It's different for everyone so unfortunately I can say how you'll react to it. But I tolerated it really well and didn't seem to effect my heart rate or BP.

Are you taking or doing anything now to help with adrenaline?

On 2/8/2022 at 10:46 PM, yogini said:

I can’t speak to SVTs, which are usually considered separate from dysautonomia.  However if you are experiencing ups and downs as part of dysautonomia it doesn’t mean your medication is failing.  They are a normal part of our condition and no medication can prevent them.  You may want to keep track of your heart rate and blood pressure when your symptoms act up to see if you notice a pattern. 
 

Fludrocortisone has the side effect of anxiety/adrenaline so if you are taking and feeling anxious that is also one thing to explore.

But ultimately if you felt better on another medication combo and your doctor refuses to put you back on it and refuses to listen, thar is concerning.  I would spend a bit of time asking him why.  You could also get a second opinion from another doctor.

 

Thanks for replying, yes my vitals get way more variable when it's like this. Even taking the metoprolol.

5 hours ago, Sushi said:

Did your doctor explain why they took you off flecainide? It is an antiarrythmic medication—I take if to prevent Afib.

I've been taking it for SVTs and a lot of PVCs. When I first started on it I noticed it helped the hyperadrenergic part of my pots significantly. He took me off it just because he didn't like the risks of the med. I had been on it for over 3 years and never had a problem with it while I was on it. I explained to him it helped my adrenaline a lot but he didn't want to listen. 

Hi everyone, 

I used to take propranolol and flecainide. But my cardiologist wanted to take me off and try ivabradine which was a disaster. Was extremely sleepy and overstimulated. 
Now on metoprolol as I can’t tolerate propranolol anymore for some reason.

On Metoprolol sometimes I have a week of feeling really stable but then all of a sudden my adrenaline comes back and gets stuck for weeks. 
It’s frustrating as I like the metoprolol but it’s pretty inconsistent and I’m exhausted when it’s not working. I’ve tried upping dose but doesn’t make much difference. 
I’ve also tried most other betas but they aren’t as helpful. 
Don’t know what else I can take to stop this happening as the flecainide used to help with my adrenaline as well. 
 

current meds

Fludrocortisone

metoprolol

pantoprazole 

I’m with you @Abe @Jyotimy symptoms have been the most uncomfortable I think they’ve ever been the past few months and last few days have been the worst. Sorry to hear that you’re struggling. 

7 hours ago, CallieAndToby22 said:

It's a huge problem for me. The Vasoconstrictors are making it worse. I never feel like I've slept either b/c of it. I have no idea what to do either. I'm sorry. Just wanted you to know you're not alone. Have you had any hormonal imbalances? My testosterone came back really high and it can be a sign of adrenal hyperplasia but I don't have any diagnosis. 

Sorry to hear, thanks for commenting. I don’t seem to have any hormonal imbalances as I’ve a had full work up of bloods recently. I’ve ruled out adrenal related things too. 

On 4/29/2020 at 9:57 AM, Abe said:

Thanks everyone.  Reading this, gave me a little bit of a relief from being so scared of these sensations when they start.  I never knew that was what I have been experiencing.  Few years back, I experienced it everyday and then it seemed to taper off.  Now it's back with a bang.  I am always confused why.  Being okay all day and suddenly my body start shrinking together (tightening up), stomach becomes a mess, struggling to breath,  and all sorts of sensations.  It's like my body is shutting down.  My stress and anxiety level go through the roof.  The last few days, I thought I was going to faint (which I am always scared of).  All I do is basically stay in bed.  I am on Lorazepam so that helps get me some relief.  Now that I understand what is causing it a little bit, maybe I'll stop being so scared and just wait it out.  Just found out I might have H. Pylori infection two weeks ago.  My stomach is burning like fire and that has made things worse. Not sure if that could be adding to or causing the adrenaline rush too.

Hi @Abe just wondering how your going with this symptom. It’s worsened a lot for me recently and nothing seems to be helping. Just so hard to move or exist! 

On 7/12/2020 at 7:29 PM, Pistol said:

Hi - have you tried an SSRI? They help with balancing serotonin - which in turn helps level other neurotransmitters, and is a known effective treatment in POTS. 

Leg raises and bringing your knees to your chest and straightening back helps me to avoid deconditioning when bedridden. Exercise while lying down is ESSENTIAL - or all of your symptoms will worsen. Even if you only do two exercises and they wear you out completely - if done every day they will help for your fatigue. It may seem like an impossible feat to you right now but trust me - they will help you feel better. 

@Pistol Thanks for replying, I haven’t tried an ssri so far, I’m sensitive to a lot of medications I’ve been wary that it might flare me up even worse and I’m already pretty weak. 
I do movement as much as I can but I’ve been going downhill a lot recently feels exhausting to even eat right now. My fight or flight getting worse has got me into this fatigue hole I think. 

On 7/12/2020 at 12:46 PM, PotsieCrocheter said:

I hope you can find more function and progression. Warmest thoughts go out to you from me. It’s obvious that you are resourceful and not afraid to reach out to others and that shows a lot of strength. 

Thanks so much xx @PotsieCrocheter

57 minutes ago, PotsieCrocheter said:

Only a person with POTS and/or ME/CFS wouldn’t question why putting on compression garments could take so much energy! 😩

I totally relate to severe fatigue, I live with it as a constant. I wait to do things when I’m a bit less fatigued, but the fatigue is always there. It gets even worse after doing everyday, very basic things and for days after doctor appointments. (I have POTS and ME/CFS, etc). I’m sorry that lately you’ve been so fatigued to even talk or move.

My autonomic specialist told me six months ago to sit upright as much as I can, instead of lying down as much. He said when he first met with me that he would prefer me reclining in a chair while resting/sleeping during the day than lying flat.  I understand it helps the body get used to gravity and react less badly to it. I’ve found this advice very challenging, yet it’s very slowly paying off. I’m now more comfortable sitting upright for longer periods of time. 

BTW: I initially learned to crochet horizontally. When I was even more severe (prior to treatment) I did 60’s style black velvet colouring with felt pens and kids sticker books in bed. It took the least energy of other creative things I attempted along the way. They were very tactile, something that tablets/iPads lack.

Sorry to hear you struggle with daily fatigue too, if I could just be a tiny bit more functional I’d be so happy but I’ve had no progress for over a year. 
Yes I try and sit up in bed all day/as much as I can, but recently I’m more exhausted/tired and well as fatigued so it is hard. Good to hear that it’s helping though. And I hope it can can helping you, it’s hard to tell sometimes if something is making a difference or not. 

That’s a great idea! Although even doing arm movements for me sometimes just feels like too much, but I do things here and there if I can. 

12 hours ago, Pistol said:

@Clueingforlooks - it sounds like you might be in a full-on flare. It looks the same for me: extreme fatigue and low energy, Reflux and constant nausea, diarrhea, weakness, orthostatic intolerance, shortness of breath, brain fog and other cognitive issues .... unfortunately rest and avoidance of overstimulation is necessary to get over it, and patience. In my case the only thing that brings me right back are IV fluids - foolproof instant fix. 

For the GI issues: when I was at my worst my GI put me on GI cocktail. It's a mix of Mylanta, viscous lidocaine and Phenobarbital ( or Donnatal ) that calmed the GI tract down really well for me. Once the Flare was over my GI system went back to normal every time. 

Thanks, hopefully I can get my gi and fatigue to calm down soon! To be honest I practically feel like I’m in a never ending flare whatever I do  IV fluids used to help me but now they overstimulate my system (even running slow).

11 hours ago, PotsieCrocheter said:

@Clueingforlooks I too tried anti-nausea meds orally and through IV and I just got loopy and dizzy. The only thing that helps me (if you can believe it) is Mango flavoured Chimes Ginger Chews. For mild nausea sometimes I replace some of my table salt for a saltstick Zesty Lemon Lime Fast-chew. It really is that specific with the flavours, I’ve got it down to a science! 😀

I’m sorry you have so much nausea and that it affects your rehydration. I’ve found keeping super hydrated so important in POTS. I had nausea so badly before I got headache and POTS treatment, and when I had bouts of Meneire’s (rarely now). I just tend to get positional vertigo these days. 

On a bit more positive/different topic: I got my BOTOX treatment by my neurologist today for my headaches and I finally found the energy to put on my compression thigh-highs, and they helped. I could never come home and think straight like I am now. 

That’s good you’ve found some things to help your nausea! Hope I can eventually find something that helps enough, I have tried ginger candies and tea before. 
 

oh nice! It’s the worst not having the energy to put compression on even though they can help. 

I’m struggling so much with fatigue lately, too tired to even talk or move. But my vitals look fine at the time. I know I need to rest some of the time but I’m having to rest/do nothing everyday and being too fatigued to function is not getting me anywhere. 

2 minutes ago, Pistol said:

@Clueingforlooks - Zofran ( Ondansetron ) 4 times a day has helped me through my worst times with nausea.  

Tried numerous anti nausea meds and even IV Anti nausea when I’ve been in hospital but nothing makes a difference 😕 xx

On 7/1/2020 at 4:49 PM, PotsieCrocheter said:

I’m on the typical pots meds, a bit different than what you listed. Plus salt and water and some SaltSticks as prescribed. I’m not comfortable disclosing the exact ones. I did get the impression from a medical journal that one of them could help with reflux, but I’m no expert in interpreting medical research papers. 

I hope you and others can eventually find something that helps with reflux. I’m sorry that you deal with gastritis too. I read it can cause nausea? I can’t imagine it added to the nausea POTS can cause when upright, that’s like a double whammy. My IBS is still out of control, but I reduced the extreme bloating by restricting gluten and milk (yogurt, aged cheddar, quinoa, and oats are fine for me).

BTW: my blood pressure fluctuates a lot too. My specialist told me not to worry about it so much, after I showed him the range. That’s just my experience, but other patients might be under the advice to check theirs. I still do if I’m feeling extra odd. (feeling “odd” is my typical, but “extra odd” these days is more and more uncommon 😀) 

I’ve read that everybody’s blood pressure can fluctuate for a long list of reasons, every day. This brought me comfort knowing. I also found out that my particular home blood pressure machine is designed for reading blood pressure sitting still with your arm supported. I gave up using mine in other positions (WITH the help of my husband in case of dizziness, etc), due to error messages and strange results that weren’t duplicated in professional settings. Maybe best to check with the instructions, call the manufacturer or as for everything I’ve said above, check with your doctor. 

 

Thanks @PotsieCrocheter it definitely is frustrating! If my stomach wasn’t so sensitive between having gastritis and acid reflux AND nausea I think I would be able to hydrate better and hence feel a bit better with my pots e.g. a dash of cordial usually helps me but hurts my stomach now along with other electrolyte drinks. 
Yes I our bp can be all over the place! I guess my main problem is that my bp can get quite low at night 75/45 at the lowest and then even if my bp is acceptable I still end up feeling pretty faint during the day and can’t think straight. The docs I’ve been to have been useless about it 😒

17 hours ago, PotsieCrocheter said:

I would also be interested in how outofadream and others are doing with reflux. I just realized my reflux issues have completely resolved since I’ve been treated for POTS. 

In the past I tried everything, and the only thing that helped (a tiny bit) was avoiding things like dark chocolate, spicy foods, etc. I had so little food choices because of reflux and also from IBS, lactose/gluten sensitivities.

What have you been treated with for your POTS? I’ve been on fludro and propranolol for agesss (and at differing dosages) but my bp and adrenaline are all over the place now and haven’t been able to control the reflux/gastritis. I’ve also tried midodrine in past and can’t tolerate it anymore. 

@outofadream how are you going now with this? I’m struggling with the same thing  and my ppi doesn’t help me enough anymore xx

16 minutes ago, Pistol said:

@Clueingforlooks - I was told by my physicians that normally MCV etc is elevated due to either high alcohol use or B12 deficiency. But in most cases slightly elevated values do not concern doctors since in some people they just run high. 

Have they checked your Ferritin levels? This is an indicator of how much iron your body stores. Someone on this forum once mentioned that this often is low in POTS, so I had it checked and indeed - it was low, although I had normal iron. I took iron supplements for a while and my ferritin came up, so I stopped. I have read that macrocystosis ( high MCV, MCH and MCHC ) is caused because the RBC's are too big and therefore carry more hemoglobin per cell, and that this will not necessarily affect the HGB value in the lab. In my case the hgb reading was low-normal but my RBC's were low and the MCH etc too high - meaning exactly what was said above. So it was a type of anemia, with the ferritin being low. I had to supplement in both B12 ( found to be low ) and ferritin. So maybe you should ask to have B12 and Ferritin levels checked????? 

Yes my ferritin levels were checked in the same blood test and they’re definitely all good. I didn’t have my b12 checked this time but in the past it’s been good (and I’ve had this high MCH for quite a number of past blood tests too). Next time I have bloods I’ll get b12 checked again, otherwise I guess it’s just the way I am. 

7 hours ago, Pistol said:

This is the case in my family as well. We all have high MCV and MCHC, meaning the red blood cells are too big, which results in "thick" blood. We all were born with this. I believe it could lead the ANS to be triggered to vasoconstrict b/c it needs more pressure to pump thick blood ( my theory only ). That may also be the reason why IV fluids help us so much!!!!

My MCH is always just high out of range but my doctors have never mentioned it and I’m not anaemic. Would that be part of the thick blood problem too?

On 5/24/2020 at 10:09 PM, issie said:

When your blood pressure drops, your body is trying to bring it back up with a higher, faster heart beat.  That is your body trying to "right" itself.  It is a compensation.   

Many times people "wrongly" feel that symptoms are illness......when in effect it is your body trying to correct a worse problem.  Suppressing compensation will go very wrong.  As your body has a built in intelligence to try to repair itself.  Just figuring out where the  core" issue is, instead of masking "symptoms", is a better approach.

@issieTotally understand what you mean! But it seems that Florinef makes me both better and worse off at the same time. Like I’m bad either way if I bump up my blood pressure with salt or more florinef my adrenaline is actually worse not better even though it’s stopping my blood pressure dropping as much. So I’m unsure where to go from here. 

On 5/23/2020 at 11:35 AM, issie said:

One other thing we figured out by trial and error, for me.  Not all people need extra salt.  In fact it was most detrimental to me.  I have kidney issues and that too can go along with POTS.  Some have low renin and aldosterone.   Florinef was a diaster for me, as was adding more salt.  Normally with both those things being low, they use massive diuretics.   The Mayo docs said that could NOT be done as I already had low blood volume and did not need to dehydrate on top of it.  Later, we also figured out I have too thick blood.  So some of the issues with blood flow was its consistency.   So I vasodilate,  not vasoconstrict.   This is opposite of what "most" POTS people do.  But this is what I need to do for my issues.  I also thin my blood with enzymes.  

I have had all this since a child and I'm now 60 and still alive and "kicking".  Had a pretty good life despite myself. A person can learn to compensate and make adjustments to "have a life".  But we are all different and we don't fit into the same mold.  There will be trial and error to find your own "purple bandaid".  

Hi @issieI can relate to this! The first few years of having pots I had not trouble with salt and was put on Florinef which did help symptoms. 
But the last 3 years has been a struggle, I’m still on florinef but now consuming salt makes my adrenaline way worse and I sometimes get pain in lower back. 
I’ve tried reducing it but my bp goes too hypotensive and my fatigue/brain fog gets way worse. Very frustrating and all the specialists I’ve been to have brushed me off. My resting bp is low but my adrenaline gets bad at the same time. 

On 2/13/2020 at 10:15 PM, Pistol said:

@Clueingforlooks - sorry for the delayed response.  In times that my adrenaline dumps and the hyperadrenergic symptoms exaggerate I avoid stimulation or exercise, I rest and drink plenty of fluids ( in my case I get extra IV fluids, since I have a port and can do it at home myself ). The more you force yourself to function the worse the resulting fatigue will be and the worse the adrenaline rushes will be. 

I take a lot of medications that help with the rushes as well and recently I started Wellbutrin, which is very effective in helping to keep me from having these adrenergic surges.  Be well!

Thanks for getting back to me. Still struggling unfortunately, feeling really faint like I could pass out but my bp is ok. Had some electrolytes the other day and it made me feel even more nauseous with adrenaline still can’t seem to win. I’m tired of this, nothing I do seems to help.

On 1/22/2020 at 9:07 PM, Pistol said:

@Clueingforlooks - yes, I am much better, thanks for asking. I wanted to also tell you that my sister - who also has POTS - gets infusions through her PCP's office and they used to run one bag over 2 hours. she would start shaking, freezing and feeling extremely cold. This was b/c the fluids are colder than her body and ran in too fast. Now they run them over 6 hours and all is well. It is annoying to have to sit somewhere for that long to receive the fluids, but it is worth it to her b/c she feels like a normal person afterwards and can actually DO some things. 

That’s good to hear. And also good to hear that slowing the fluids down helps your sister! 

On 1/19/2020 at 8:35 PM, Pistol said:

@Clueingforlooks - this used to happen to me when they gave me Saline over 2-3 hours. Then we started to run it slower, over 6-8 hours, and the headaches and jitters disappeared. Then we switched to Lactated Ringer solution ( more electrolytes, more volume than Saline ) and it worked better yet.  Today the IV fluids are a necessity for me in order to function at all. 

That’s good to hear that it got better doing it slowly, I’ll talk to my doc about it.

hope you’re doing a bit better now!

On 1/18/2020 at 4:35 AM, Robert J said:

In terms of fluids, I presently get 1 liter of standard sodium chloride IV 4 days a week run over 3 hours. My doctor added some potassium and many of my symptoms resolved however my problem is more with dehydration. Oral hydration just doesn’t work no matter how much I drink. Doc says it has something to do with vascular pressure and IV fluids help correct that. If I miss even a day I feel it.  I also take fludrocortisone to try to help me hang onto some sodium which helps with fluid retention. So fluid sensitivity seems part and parcel of this disorder but the key for me was stabilizing the vascular pressure.

Interesting, @Robert J so IV saline was the only way you stabilised vascular pressure? Does feel like that could be my problem yet saline still gives me head pressure and jittery feeling.

@Pistol Sorry to hear that you had to be in hospital recently. 
IV fluids definitely used to make a difference to all my pots symptoms but now when I’ve had them or oral electrolytes/sodium it just adds to the adrenaline/fight or flight feeling I’m already having. Whether my bp is low or high. Then sometimes I feel hyper with low bp then if I try to increase bp it just gets worse. Very confusing! 
 

15 hours ago, p8d said:

Can you try methyldopa or guanfacine for the adrenaline?  I found that methyldopa in particular did not lower my BP but did help with the other symptoms.

I haven’t tried them yet, but I’ll talk to my cardio about them next time I go! Just have avoided in past because bp gets low and increases fatigue.