Conrad_hemsley

I've had exactly this. It caused anxiety and random adrenaline rushes. It forced me to stop exercising altogether - since then I've been trying to build up my physical condition by slowly increasing steps.

Hi all,

Recently I've been trying out Mestinon.  I am very sensitive to meds, and experienced some side effects so it took me 5 weeks to go up to 50mg per day. From 40mg upwards the side effects became too much so I quit - cold turkey, as my doctor had advised. Later I learned many people wean it off which given my sensitivity and strong reaction would probably have been a better idea.

Anyways, shortly after quitting I experienced increased dizziness, which was bearable. However, after about 4 days since quitting I started getting sudden anxiety/adrenaline rushes during the night, waking up with extremely high HR, etc. I normally never have these without a specific reason.

I'm now at 8 days since quitting and every day the rushes have been becoming worse. I'm afraid that it will lead to multiple day adrenaline rushes with panic attacks and a completely messed up ANS, which I've experienced before and led to significant worsening of all symptoms.

Do other people have experience with stopping Mestinon? Did it cause symptoms? Did you wean off or quit cold turkey? How long did it take for the stopping symptoms to wear off? I'm getting a bit afraid that it has caused a permanent change...

I'm now considering taking a small dose of 10/20mg per day to potentially stop the adrenaline rushes in its way and soften the cold turkey effect. I would then wean it off slowly. At this small dose I didn't experience side effects previously.   Has anyone else done this?

Thanks a lot for your help!

Thanks for your replies! @Julyrose at what dose did you start noticing the benefits?

Hi all,

Started building up Mestinon about 4 weeks ago. Am taking 40mg per day right now and tomorrow upping to 50mg. I'm increasing the dosage very slowly since I'm experiencing a lot of (uncommon) side effects. I've been thinking about quitting because I don't feel any better on it, probably only worse. However I want to be 100% sure it's not for me given the amount of people who experience great benefits from it.

Hence, my question is: at what dosage have you all started to feel benefits (and what benefits), so that I can estimate at what point I can be positive it won't do anything for me?

Thanks!

@Delta, thanks for your reply, I would indeed watch out with raising your feet for the same reason as @bombsh3llsays. I’ve also done this for a short while when it was absolutely necessary but tried to limit it as much as possible.

@bombsh3ll, thanks for your reply, that’s unfortunate. Wow, what a story! I do indeed go to the toilet at home with the door open when I feel lightheaded for this reason, guess I’m not doing it for nothing!

Hi all,

It’s known that raising the head of our bed would help the kidneys to retain fluid, thereby potentially enhancing blood volume and improving symptoms.

My question is, would this also work if the bed is raised only from the middle upwards, I.e. when you have an electrically adjustable bed? Theoretically I’d assume he’s since the kidneys are then also raised but I’m not sure. Thanks!

@CarolS, have been reading this topic, thanks so much for all the info you provide.

i too have POTS and (suspected but pretty sure) intracranial hypertension. This theory about the brain lowering blood volume because of the hypertension sounds very interesting.

just one question: did the lymph drainage you describe help relieving the intracranial hypertension or did it just help other symptoms?

Thanks a lot @bombsh3ll! 

Thanks @Delta and @Pistol for the tip, will talk to my doc about it.

@bombsh3ll, I have indeed been gradually increasing it, but I suspect way too aggressively, I have done a lot of bodybuilding in my life and thus have much difficulty pacing myself, I want to do more than the time before every time, etc. I was literally gasping for air after exercising and perhaps that wasn’t that good of an approach!

I’m definitely not going to give it up, when I just started I was feeling really well. I will take it a LOT easier though.

No fever here, have upset GI indeed (bloating and excessive belching) but that was already before both the anxiety and Chinese food.

I am indeed very keen on trying out medicine that helps with non-psychogenic anxiety, since that is exactly what I’m feeling (as I’m not mentally anxious for something, it feels physical really).  Which would be examples so that I can mention them to my doc?

thank you!

Hi all,

Male, 28 here, POTS since 2 years ago, bed bound for the last year. Quite a severe case, only able to sit upright for eating and toilet. I’m dealing with a really tough situation right now and would love your help.

About 2 months ago I started exercising in bed. I hadn’t done any exercise before while having pots. It went quite well, I didn’t get tired at all, so gradually increased the intensity over 7 weeks, up to the point where I was able to do multiple exercises with resistance bands, planking, etc. I didn’t feel any relapses or increase in symptoms.

One morning, c. 2 weeks ago, I woke up and suddenly got really bad anxiety and an adrenaline rush. I thought it was because I had Chinese food the evening before (I know, bad idea), so I just kept on exercising. 

The anxiety became less, but didn’t go away, I was continuously tense and anxiety was just under the surface, just one irregular thought and it would get triggered. Also my heart rate has been much higher and intenser than normal and I tremble a lot. I also get sudden bouts of really bad depression, which I normally don’t have.

After about a week I realised that it might be due to the exercising, since I was exercising quite intensely, while my body wasn’t used to anything at all, and I didn’t feel the impact it had on my nervous system since I take propranolol. I also noticed my HR still remaining up for the entire day after exercise, so I quit last Tuesday.

It has now been a week since Tuesday and I still have this continuous feeling of anxiety, stress, tension, higher HR, palpitations, trembling, bad sleep, midnight wake-ups, very sensitive to stimuli, etc. It has maybe become a bit less but not much.

I’m starting to get really worried about it and it’s messing with my symptom level. Usually I’m really calm and therefore very able to deal with the whole POTS situation but this is driving me crazy, especially the depression episodes.

What do you guys think, could overexercising be the reason for this? Has anyone else ever had something similar, potentially from exercise? When did it go away? Should I just rest or do some very light exercise (because it is known to reduce anxiety)?

All,

Male, 28 here. Have had pots for 2 years, the last year of which bedbound. In the past couple of months things have been going downhill rapidly.

i keep on getting severe adrenaline storms, some of which last for multiple days, where I am extremely wired, high heart rate, can’t sit still, no sleep, etc. The thing is, about 5 days after these storms I am getting a huge relapse, where my OI is worsening very much. Lately, this has gotten bad to the point where I’m now not able to get out of bed, barely able to sit upright, not able to have a pillow under my head, legs raised under a pillow most of the time, peeing in a bottle, etc. The dizziness is so extreme that I wake up in the middle of the night to put something under my legs. My POTS is so bad that my body otherwise compensates for the lack of blood flow to the brain by sending more adrenaline in my system, leading to another storm, leading to worse pots, and on goes the vicious circle.

I am now at the point that I don’t know what to do anymore. It seems I can’t get out of this downturn. I’m on propranolol, 15mg pd, my body is not able to handle more. My doctor says I should just rest but rest isn’t doing it anymore.

What can I do? Should I let myself be taken into a hospital? Is there anything I can do to stop the adrenaline storms? Advice is much appreciated!

Thanks @JimL, have indeed been trusting that for the last couple of weeks:)

5 hours ago, Leann said:

Dear Conrad_hemsley,

If your symptoms are worsened by beta blockers/propranolol, you may have POTS related to mast cell activation syndrome, which is known to worsen with the use of beta blockers.  I'm not an expert, but have recently been diagnosed with POTS several months ago after having very worrisome symptoms for about a year and a half.  I'm a physician myself and have devoted a lot of time and energy researching POTS, its various forms and by the time I saw the POTS expert in my area, seemed to know as much or more about the various forms of POTS.  She said she didn't 'believe' in the MCAS for of POTS, but it's been in the literature about POTS for some time.  There are various ways to test for MCAS, but one of the ways to prove someone has that form is that symptoms improve significantly with medications that stabilize mast cells, such as Benadryl/diphenhydramine and H2 blockers such as Ranitidine/zantac.  In the U.S., both these medications are available over the counter and very safe, so you might talk to your doctor about this or simply try 1 or both of these medications during an attack and if you improve significantly would point toward MCAS form of POTS.    Also, have. you had your ferritin level measured?  There certainly is a subset of patients who have relative iron deficiency (not necessarily with anemia) that is reflected with a low ferritin (<50), that significantly improve with IV iron when getting ferritin levels in the 75-100 range.  I have had a very low ferritin level ever since pregnancy, but have not been able to get it up with oral iron repletion.  There was a clinical trial enrolling for adolescent patients with POTS and treating them with IV iron but it closed early due to low recruitment.  Unfortunately, as I think it is a promising treatment for POTS, maybe for the majority of patients. https://www.prohealth.com/library/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i-6672

Leann

Thanks Leann, I have looked into MCAS previously l, but figured I didn’t have it because I don’t have diarrhea or constipation or other bowel issues. I do have continuous allergy issues leading to chronic sinusitis though, could that have anything to do with MCAS?

2 hours ago, StayAtHomeMom said:

The best thing you can do is try the medications your doctor is prescribing. I hate taking my medication (just on principle) but my Beta Blocker is the one I can not live without. If I didn't take it everyday I doubt I would be able to get out of bed. If a medication doesn't work well there are many things that are similar that may make you feel better. Or the dose may need to be adjusted. Being bed bound is only going to make things worse in the long run. I hope your body settles down soon. I know it is rough when it decides it wants to go haywire. Good luck. 

I agree, I’m leaning towards just going with what my doctor prescribes. He is currently thinking about either fludrocortisine, desmopressine or mestinon. Thanks for the kind words!

1 hour ago, Outaker said:

Ivabradkne and clonodine is the usual combo for hyper pots 

Thanks for your advice - I do not have the hyper type of POTS though. Will look into those a blockers in any case. Thanks!

Dear @Pistol, thanks so much for your quick reply. I am seeing a cardiologist who specialises in POTS and ME/CFS. He is one of the only people who deals with these conditions in my country (Netherlands). I did inform him this morning but he’s saying the reason I’m worsening is because I’m doing too much - but I’m not doing anything, it’s just that from the position where I’m in (being bedbound 24/7) even the small things are already giving me relapses: I am quite sure this relapse is because I had to do two 20-minute phone calls last week with my health insurer which is apparently already too taxing for me.

He did indeed prescribe me propranolol and ivabradine. I took the propranolol for a while last year but I got significantly worse from it, it made me very weak and worsened my orthostatic intolerance. Therefore me and my doctor agreed it would be better to stop taking it. He then prescribed me ivabradine, which I have been hesitant to take since I had such a bad experience with propranolol.

Another reason why I’ve been hesitant to take them is that there have been periods in which I really improved by consistently abstaining from stressors, eating healthy, resting excessively, etc. I talked to some people who recovered fully from POTS by doing these things and I have been confident that I could do it too. And it did go very well, up until about 2 months ago, when I had a crash that put me in this vicious circle that I’m still in. 

IV fluids (does that include IV saline?) is something I’d like to try but I have no idea how to arrange that. Did you get that at a hospital?

Hi all,

I have POTS for almost 2 years now, have been bed bound for about a year. In the last 2 months things have been going significantly worse, very little ability to even sit upright, constant lightheadedness, often unable to have a pillow under my head.

Now, last night I woke up having a major attack, becoming super hot, extremely dizzy, shaking, heart rate going up to the 170s. Ended up calling the emergency number but they only did some tests. I have had this only once before. Since I usually get very bad relapses after adrenaline rushes, I am afraid how this is going to turn out, since I’m already practically unable to do anything besides going to the toilet, and now 6 hours after the attack im still completely wired and full of adrenaline. 

My question being: first of all, any experience with similar symptoms, and secondly, I usually don’t take beta blockers but have propranolol and Ivabradine in my house, does anyone take beta blockers on an as-needed basis? Any experiences would be much appreciated. Thanks!