Looking for reassurance and hope to keep going

[Den]

 

I was diagnosed with POTS relatively recently. I am currently on 5mg daily of Ivabradine (started beginning of June) and 7.5mg daily of Midodrine (started 24 June). I am due to start Mestinon in 2 weeks.

I am wearing compression garments, taking salt, drinking at least 2.5l of water a day, eating small meals, starting physio and implementing all the other lifestyle changes possible.

But I have seen absolutely no improvement. I think maybe my spikes aren't going quite so high (heart rate 130 showering, for example, rather than 150) or maybe occasionally coming down quicker but they would do this anyway sometimes, with so much variability from day to day.

Some things seem to be getting worse - more severe headaches, more severe and more often occurring chest pains, more irregualr heartbeats, BP all over the place etc. The waist-high compression tights seem to make me even more nauseous.

I have scoured forums and discussions and YouTube channels but all I seem to be able to find are accounts of how such and such was an instant game changer. I know everyone is very different but I can't help but be disappointed and disheartened. I know I am also probably being too impatient - it is early days and it can take a while to get the dosages/medications etc right.

I am so lucky in so many ways, not least of all for having a lovely consultant but I had got my hopes up and am struggling to keep them up. I guess I am just looking for some reassurance. Maybe others could share similar experiences that have a happy ending?

Sorry this is so long but thanks if you have read this far.

[Pistol]

@Den I totally get you because I have been in your shoes. Your fears and Feelings are normal. It is scary and lonely to go through finding relief of your symptoms. But let me reassure you - it is possible to regain stability with the right treatments, the trick is to find them! And that takes a LOT of hit-and-miss trials. I had to fire 5 cardiologists and one autonomic clinic before I found my prince. This specialist listened, diagnosed and patiently tried tons of meds until we finally found the right combo. I have a severe case of HPOTS, so in addition to the meds I get IV fluids several times a week, which is probably the most important treatment for me. 

I am glad that you trust your consultant - having a compassionate physician that is willing to stick with you during the frustrating ( and so often discouraging ) journey to finding the right treatment. I too had a PCP that was my Rock, and a shoulder to cry on. Today I have a whole team of wonderful specialists that all understand my illness and work together to help me. My ER visits, hospitalizations and doctor visits have become minimal, and I no longer have anxiety over my illness. 

What also is important in the early years of this is to identify what triggers you. I have many triggers that I have no control over ( barometric pressure changes for example, and hot weather ), but I can now prepare. For example: I stay inside during hot AND cold weather, I exercise regularly but only for 2 minutes at a time, I avoid long periods of standing, I stay home when I have even the slightest cold, I avoid insect bites ( they are big triggers for me ), and when I feel a flare coming I increase my IV fluids. ( BTW, IV fluids are a commonly used and known treatment for most dysautonomia patients, but mostly only used as a last resort ). 

I started identifying my triggers by keeping a diary - whenever I would have tachycardia or palpitations, syncope, nausea, dizziness or any other symptoms I would check my HR and BP and write it down, along with the symptoms I was feeling. Later I would also include weather and time since last meal etc. After a few months of doing this a clear pattern emerged and showed what triggers my symptoms. In order to keep a diary like that you will have to learn to carefully listen to your body - most of us are so used to our symptoms that we tend to ignore them until they become severe. In reality our body gives us clues much earlier and reacting to them right away can greatly reduce our discomfort. 

Please know that you are not alone. You can read my story ( if you want ) here 

Be well, and be patient, and be kind to yourself! 

[MikeO]

Hey @Den you are not alone but be assured you can make a difference it may not seem like it right now but with some work and persistence life will get better.

I too have had my battles with Dysautonomia it started getting bad in 2019 and last february it really stepped up a notch. Between the orthostatic hypotension, tachardia events, GI issues, allergy like symptoms list goes on has been a bit of a ride.

Sounds like your provider is starting a drug regimens (good thing it's a start) keep in mind it may take some time to reap benefits from them or find the drug cocktail that works. Normally for me it takes a good several weeks or so to find out it they work for me or not also may take a bit of time to shake any side effects. Good example is when i started Ranolazine initially i was having headaches but then two months later they cleared up and now i think the drug is awesome. 

I would keep a good daily diary with your vitals and notes as for me it has been very helpful in showing trends like having issues when my diastolic bp is low, how any drugs are working, and just recently my faint specialist is suspecting Postprandial Hypotension based on recorded symptoms and vitals.

I attached a sample of mine

Hang in there you are among like friends.

  

[Den]

I am always so grateful to anyone who takes the time to reply. Those simple words - you are not alone - are so very powerful. And knowing that you guys get the 'frustrating' and 'discouraging' parts of a journey that seems sooooo long and fruitless at times. Again, reading those words from others who have been before me really really help me get myself back up and fighting again. THANK YOU.

There is much in those replies too that I need to hear at the moment - that reassurance that it takes time and the trial and error element of the drug cocktails. I think I know this in my heart but reading it from other's experiences really helps.

I have been trying to keep a daily diary/symptom log but it is all over the place and the brain fog I suffer from really doesn't help me get organised. I will keep at it and maybe try some different ways to record things so it is less of a mess and I am more likely to see patterns.

I am really interested Mike O how you keep such accurate vitals. I have a smart watch but it is way off on the heart rate (my BP monitor and finger oximeter typically agree so I use those to record things) and it doesn't do a running recording - only every minute. By the time I have got my oximeter or BP cuff on (oximeter sometimes takes ages to read) and got the reading things might have changed. Especially as I might have to sit down in between before I fall down and then stand up again which sends readings all over the place. Do you have any advice? Or recommendations for what equipment to use.

Thanks again to you - especially as you have your own battles going on.

[MikeO]

28 minutes ago, Den said:

I am really interested Mike O how you keep such accurate vitals. I have a smart watch but it is way off on the heart rate (my BP monitor and finger oximeter typically agree so I use those to record things) and it doesn't do a running recording - only every minute. By the time I have got my oximeter or BP cuff on (oximeter sometimes takes ages to read) and got the reading things might have changed. Especially as I might have to sit down in between before I fall down and then stand up again which sends readings all over the place. Do you have any advice? Or recommendations for what equipment to use.

Not sure what the answer is I do use a home heart monitor as a sanity check but i don't rely on it for vitals (i don't have any arthimas). I do use a OMRON bp cuff which stays on the kitchen table. Yes as you have described i do get the sit down before you fall down (happens often) and then vitals are all over the place. I am not sure why i can handle some of the low bp recorded drops and get to the cuff from what i have read over the years our body's learns to adjust. but i can tell you when i am at 79/52 is a bit of a dash to get to the table to sit back down.

I have at one point kept the cuff by the recliner and recorded low bp's while seated and then took reading while standing and again saw the drop (30 second rule upon standing) but because i have well documented the drops in bp's i no longer do that, does not pay to obsess over vitals IMO just more stress they are what they are. (my care team knows i am orthostatic) what i do record is additional stats when i have a uptick in symptoms i.e after eating, med changes etc....

I do religiously take my morning (just out of bed) bp as i adjust one of my meds based on my diastolic blood pressure. Knowing your numbers is a good thing.

Hope this helps you some.